Saturday, 30 June 2012

Allergies !!!

A word that encourages spreading of said affliction, so won't mention it more than a couple of times. Allergies- there, that should do!
Many ME patients have various sensitivities arising throughout the course of the illness. I didn't have that many occur that hadn't been diagnosed before my initial virus. I am sensitive to orange food colouring- my Mum realised this when I was a child and it has not really bothered me so it's just a tale of inflated, itchy cheeks that I can boast about at a party.
I have had light sensitivity to the point of arguing about the curtain being open 2 or 3 inches rather than 4! Noise sensitivity-I used to read subtitles on television rather than listening to it. Also over the last 20-odd years my skin has become more and now less aware of which soaps, shampoos, laundry powder etc. I use. I am actually sitting now in a wool cardigan over a short sleeved t-shirt-unheard of for me, for at least 15years. I would have come out in a rash before you know it.
I do have hay-fever. This year more than most and uncannily at a different time of year. If you are a UK dweller you will know how interrupted the seasons can become and this year has been strange as ever. My affliction didn't start as usual with tree pollen and spring flowers such as wisteria and cherry blossom. There was so much rain it all seemed to wash away and I was laughing. Until the grass season came into effect a couple of weeks ago- which seemed to be early, for no apparent reason. Some days I can walk around the garden without a care in the world but then others I am sneezing as soon as I wake and wonder what on earth is happening; eyes feel as if they are out on stalks; sinuses ache and ache; ears feel bunged up too and the runny nose seems to be going as fast as the Jamaican sprint relay team. The best form of therapy for this is distraction, as with so many other symptoms. I keep a tissue or hankie at hand and deal with any ablutions when I need to!
I'm not sure I have had many others. The problems with digestion comes up again and again with ME patients and yes, when you go to restaurants or possibly even eat with family at a wedding etc. you need to make it clear that you can't eat certain foods. By saying you have an allergy it is sometimes easier to get the point across and the issue is taken more seriously. I don't consider just having an aversion to digesting dairy or wheat for a while a specific diagnosis, it is just a bit of a pain and I have been able to come back to them in small amounts as my health has improved. My advice would be don't give yourself labels unless you have solid proof that you are going to need paramedic attention, or weeks of self-medication, by eating a peanut, sesame seed or piece of cheese.

Friday, 29 June 2012

Monthly Achievements, Again

Another list, this time brought together over the month.

I dug up some weeds for about five minutes. They were tall but had really short roots and just required a large fork- so no bending!
Two weeks later I took out the hand held loppers and attacked a Dogwood tree by our front path and some Snowberry by the front gate. Again it took less than 10 minutes and my husband cleared up after me, when he came back from work (useful aren't they!!!)

Began to tidy up our spare room, which we call the music room as it contains the piano, my flutes and all my music. It will also contain my OH's vinyl collection (over 1000 12" singles and albums). This task has so far taken the last four weeks with the help of my Mum, our cleaner Helen (bless her thoroughness) and IKEA's delivery service!!! Boxes and piles of sorting were put on the living room floor and occasionally on the bed for me to sit and wade through. But it is great to have the energy to do that and to sit on my heels on the floor for an hour with the shredder whirring in front of me is particularly cleansing.

Reading more, when I choose to and without dire consequences; I have finished a few books this month. As I used to do when I was a child, I have a few books running in tandem and pick up which ever book meets my mood. However it now takes me weeks or months to get through some books, at the age of 8,9! 10, I was reading each book in about 3 days!

Yoga class in the garden, using the iPad and various mats, blankets and bolsters on the grass. I have downloaded a few free classes from iTunes, perfect for beginners and thanks to a couple of good teachers I know I can sit back or lie down, or even adapt a few minutes, if I know particular poses are going to be too much. I have loved doing this in the garden a few times, hopefully as the summer moves on I can do this more often. This is also a great place for lying and doing yoga meditations-see my sunbathing post! (link)

I am loving my own space. As much as I would like to be a social thirty-something again, I remember now how much I love walking by myself, in solitude, with no sounds but my feet crunching and birds singing (I will content myself with sitting or lying in the garden for now and dream of the walking!). Time to myself indoors with nothing happening is bliss too. And I'm not straight on my own case when a day goes by and I don't achieve anything mind-blowing.

So another month, more little things happening. I have been told that I might be surprised at how little change there is in the first 6months and then how much change there is in the second 6months; I will wait with baited, but calm and steady, breath.

Thursday, 28 June 2012

The Ladder of Health

Yes, a ladder.

I started using this analogy last year and it has grown into something quite profound. I want to share it with you.
I crashed two years ago. I went to bed. I had no choice. I could barely move some days. My body gave up, but I didn't!
I listened and said, "OK, you win" I'll give you a few weeks, check some blood tests and see what happens. It had been starting to flail in January, I had actually gone to my doctor and complained of feeling more tired! Not just tired, more tired! There is a difference, as I am sure many of you will know.
So at this point if I had the ladder I would have said to myself,
"do you need to sit on your current step for a while or go down a step?"
I didn't realise that I needed to go down a step, off-load some of my responsibilities and give myself a break.
By the summer I had been falling down the steps, without realising it. Not really listening... pushing, doing what I expected myself to do; keep going, strive and you will succeed. I wanted to have a slightly interesting life. I accepted I was ill, just wanted a little piece of the social cake- a slice of life outside the home. I was careful, made sacrifices left, right and centre, but did not purposefully take that step back by my own choosing.
So by doing all this, my body made the decision. It pushed me off the ladder and told me to sit on the floor for a while. I kept getting up and it kept pushing me back off, for about 18 months in cycles of 3-6 months, I was constantly doing and flailing, doing and flailing. Stepping up the ladder too soon, only to fall back onto the floor.
Last November something happened. OH and I decided that we had to come first. Our needs above everyone else's and for the time being most of my needs over his.
I stepped back onto the floor and happily sat down. What a relief that was. To make the decision myself!
Christmas was the best we had ever had. I was ill- yes I was ill. We were smiling to jaw-breaking standards. Family and friends who didn't understand were laughably annoying. But friends and family who did understand suddenly came out of the wood-work and switched on the light. We had support we didn't know was there.
Even Olympic athletes have to step back occasionally; a ham-string injury or twisted ankle might take them out of full capacity training for a couple of weeks and who is likely to ever reach the top of the ladder? The idea is not to aim for the top, but to reach your comfortable step, sit down happily and be yourself. I reckon I'm on the first step, I've tested the second step a few times in the last couple of months and know it's not quite strong enough for me yet. I will wait until it is, as the last thing I want is to be pushed back to the floor and have to do time there again.

Wednesday, 27 June 2012

Eleven questions AKA MeMe

This is slightly off-topic, but actually shows my willingness to involve myself in the day-to-day life of socialising and "getting out there" again. As the days go by, I feel more able to integrate into the big wide world again, it has to be slow and as the days go by I will be more able some days than others.
I have to answer eleven questions and then nominate some other bloggers to answer mine which I will set at the end of the post.
Here goes... questions from Recipe Junkie

Here are my ELEVEN meme answers...

Wham or Frankie Goes to Hollywood?
Frankie was way out there, but I can't let go of the Christmas blues - Last Christmas, I gave you my heart.... I have to see the video every year on 4Music now, it is as close to my heart and slightly cheesy as watching the Christmassy films Holiday and Love Actually.

Dog or Cat? Never had either, but love neighbour's dogs jumping up with glee to see me and obeying my order to calm down and SIT! Cats can be so soft and furry, but I will never get used to the stink of cat litter or the scratch of claws through the thickest pairs of jeans.

Nigella or Delia?
Delia, hands down. My culinary teacher and what a kitchen she had in the eighties! I love her Complete Illustrated Cookery Course and it has the privileged home in my kitchen with The Dairy Book of Home Cookery and Muffins; all my others are in the living room where we have more cupboard space.

Silent Witness or CSI?
Never watched Neither!!!

Thomas Cook or Internet?

TV or Radio?

London or Paris?
Can't find Covent Garden, the Hayward or Coulthard Galleries in Paris! All a walkable distance from Waterloo station and the Hayward is the perfect hideout if I have 15 minutes to spare before I definitely need to buy a coffee on the station!

If you could choose any 6 people to come for dinner with you (living or dead) who would you choose and why?
Sigmund Freud, he could analyse all the guests.
Stephen Fry, he has some amazing name-dropping skills, as seen on QI, and he could tell us a witty tale or two after dessert.
Eliza Dolittle, to sing in-between courses.
Renoir, to give us all portraits, or do an oil painting of the whole affair.
Leonardo de Vinci, to do the same, and possibly exclaim at some point during the evening "the iPhone; I invented that in the 18th Century, during my last dinner party!"
My sister, who is great at helping in the kitchen and would keep me sane through all the chaos of having dead people actually in my garden.

What would you cook?
I'm thinking it would be more relaxed(and easier for Freud to start his analysis) if we were in the garden at the height of summer...
Delia's Sausage rolls and home made Dough balls as entrées
Straight into BBQ, Sausage/pepper/onion kebabs, beef burgers, chicken drumsticks, potato wedges, salad- basically finger food
And finally...Triple Chocolate Chocolate (mocha) Chocolate muffins with creamy Yeo Valley vanilla ice cream- had to name-drop there, the most amazing creamy ice cream I have eaten, like, ever !!!

Favourite book when you were a child?
That's not fair- favourite!.. OK, What Katy Did.

Earliest memory?
Viewing what turned out to be our long-term family home at age of three, and being scared by a big, black labrador on the green flowery sofa- I remember the scary bit as I distinctly know I had a viewpoint from behind Daddy's legs!

My ELEVEN questions..

Which is your favourite fruit?
Any weird allergies... go on, you know you want to share?!
Train or Plane, if budget wasn't involved?
Which book did you finished most recently?
And when?- be truthful- last night, or three years ago!
Coffee or tea?
And which options do you go for in a coffee shop, earl grey? latte? hot milk? sugar?
Opera at Royal Albert Hall, or gig at Wembley?
And which one or who?
When writing your blog which words most often need to be repaired by spellchecker?
Have you ever broken anything? (ie. bones in your body, not a plate in the kitchen!)- tell us how.

Now I need to tag some fellow bloggers. As I am new at this lark and haven't actually started reading or following many and most of those that I am following are organisations and businesses, which probably wouldn't want to put this on their company websites,I'm going to start with she who tagged me and follow from there...

Recipe Junkie
Cakes, babies and other ramblings
Sezza Knits

Tuesday, 26 June 2012

Sunbathing- Trauma or Triviality?

When I was about 8 or 9 years of age, whether it was a couple of days, a couple of weeks or, as it seemed to me, the whole summer I'm really not sure, I spent 'the whole summer' walking proudly around with my jeans on, turned up at the hem about 6 or 7 times so they came over my knee. My Mum didn't like it and wanted me to just go and put some shorts on, I thought it was tremendously cool so I refused. This was probably the beginning of my passion for individual fashion. Even now I will wear what I choose and boy did I look individual in college!
Anyway, I digress. So during this summer I found a passion for being brown and freckly. My friend at school had freckles beyond belief and I wanted just as many. It was also around this time that I started to notice how being brown indicated that you were probably rich enough to go to exotic climes and this was a very good thing with school friends in September- lying in the garden would have to make up for this.
So lying in the garden one lazy August afternoon. Mum and Dad were drinking tea and reading the paper and everyone was eating ice cream, it was hot and humid and the idea of shooting around the garden with the bikes in an obstacle course race was definitely off the cards. Instead of lying on my front and reading I was lying on my back with my eyes closed. (unknown for me to be doing nothing, but I decided it was a good idea) This was a bad idea. Not only did we feel lazy- so did the bees!
I screamed
and screamed
and screamed.
I was not a screamer, Mum and Dad knew something was up, I was shaking my leg furiously. I was in pain. The bee didn't stand a chance. I shook my leg so much the sting actually came off the bee and stayed in my leg- so even more screaming when I saw what had happened. My brother searched for the now dead culprit in the brittle, brown, rain-starved grass and Mum searched for tweezers!

I had the sting in a little pot as a souvenir for years. Isn't it crazy what an 8 or 9 years young child will do?
Now after almost 20 years I have started lying in the garden again, I've sat, or lounged in the interim years, always with my eyes open. I'm enjoying the rest, the healing time away from the bed and duvet! I'm even lying directly on the grass and walking around with bare feet occasionally! Ahhh! Maybe when the wasps and bees start wilting in the warmer (maybe I should say later, not warmer!) summer months I will be wearing sandals!
I am fully clothed, that is the big difference- and my trousers aren't rolled up! If I convert to a skirt instead of full length linen trousers I might start being more cautious too...

Monday, 25 June 2012


Sleep is an odd thing in those of us with ME. So many have insomnia, some can't stop sleeping, some sleep during the day and lie tossing and turning at night. Finding what is right for you and changing as improvement comes and symptoms lessen is the challenge. When I was severely ill in my late teens I would sleep up to 16 hours a day, from 9pm to 9 am and then a long rest in the afternoon, it seemed ridiculous, but was most definitely necessary.
I have generally managed to avoid insomnia throughout these last 20+ years. Using tricks to adjust my routine and keep me from sleeping too much during the day if a couple of nights are restless. Currently I am managing any daytime sleep during the afternoons, three or four days a week.
I have recently read a book on taking naps- Take A Nap, Change Your Life, by Sara C. Mendick, Ph.D. She has studied sleep patterns like no doctor before her. The idea is to plan naps during the day- be they of 20 minutes or up to 3 hours. There are four stages of sleep and by going through no more than two cycles of these stages during a nap, the body won't go into deep sleep- not a pleasant experience if interrupted from that! During the day the body continues going through it's own circadian rhythm of sleep. We constantly have the power to sleep going through our body and the quality of that sleep can be determined by when during that rhythm you decide to sleep.
I have discovered that a morning nap is sometimes needed and now know the reason why that sometimes needs to be longer for me to wake feeling refreshed. At the beginning of the day more REM (Rapid Eye Movement; highly-active dreaming) sleep is experienced, it is why we are more alert and ready for high-powered meetings and cognitive reasoning in the morning.(it's different for teenagers so don't start telling them to wake up at 6.30 you'll still get grumpiness!) We experience more and more REM sleep as the night wears on and if you don't use an alarm you will wake up naturally after a REM sleep stage and therefore awake, alert and ready to go, rather than during a REM stage and therefore dozy and cross!
In the afternoon an interesting thing occurs- personally I relish this and should try and achieve more of it than I do. As the REM sleep stages diminish, the stages flip in size, and the afternoon nap is one of healing, The healing stage- where growth hormones are fed through the body and repair and rest are given in droves. I have taken on this message and now avoid morning naps even more, keeping myself busy in the morning with sitting in the kitchen- like I am now. I want to go back to bed, but the longer I leave it, the more beneficial it will be for my body. This healing sleep is also something which happens more if you go to sleep earlier and for this reason decided this weekend to start a new sleep regime. My husband and I have always turned the light out at the same time. Usually anytime between 10pm and 12 midnight. This is sometimes dictated by me, sometimes by him. The difficulty has been that he does not need as much sleep as I do (funny that, as I have ME!). So last night I decided to choose a new tack. (no we are not using separate bedrooms!) I would sleep when I decided to, I would follow my needs first and foremost; he would read to me first, then choose to do as much TV watching, reading and radio listening as he liked in different room and come to bed when he chose to Full Stop! This worked last night I didn't switch the TV on once yesterday and the light went off at 10.15pm: the bonus was that I was not tired and grumpy when he woke me by getting up at 6.30am this morning; I was calm and peaceful, bright as a lark and ready to start the day with him by 7am; wonderful. We could interact before he went to work, I could help him fill the dishwasher and he said goodbye before he left at 7.45am without disturbing my cross and grumpy REM sleep. Long may it continue(?)

Sunday, 24 June 2012


I do find fiction more difficult to read; it is easier to listen to, as the story can ramble off subject and I can feel resentful when I have read three pages, using my precious energy for no apparent reason!!!
A good way around this landed on my lap by a simple visit to the local charity shop. Reader's Digest publishes multiple books in one. Each one abridged by 100-200 pages, so the story is more concise and the flowery bits are missed out! Put "Of Love and Life, Reader's Digest" in Amazon search and you will find multiple books each of three abridged novels. I have been lucky enough to find them second hand in charity shops, and my Mum and husband look out for them but they are all used from £0.01 with P&P, so certainly worth a try. I don't always read the whole collection just one or two from the three, but it makes it so much easier for my memory. I hope to be able to come back to those once I have read through some of my non-fiction ones.
Another good read with short pieces and easier to follow, is The Time Traveller's Wife. It has become an award winner and you may know of the film, but as the chapters were sometimes short and the scenario of time-travel repeats itself over and over throughout the book, the concept is easy to grasp and therefore easy to read!
Books of letters is another great option. 84 Charing Cross Road tells of the friendship built up between a writer in New York and the manager of a secondhand bookshop in London. The letters are touching, humorous, tearjerking and follow their lives from the late 1930s, through to the 1960s. In the same vein is The Diary of Anne Frank (though maybe more of a tear-jerker) and The Guernsey Potato Peel Pie Society.(these aren't strictly fiction but are certainly not studious self-help books) Also remember Bridget Jones' Diary!
I have been able to listen to a more varied library. OH reads me autobiographies, most recently Stephen Fry's. We've tried reading more complicated tales and larger classics. But if I don't know the story already or it gets too fiddly with detail we have to give up as I just can't follow them. Oliver Twist was one that worked and Watership Down by Richard Adams.
The Sci-Fi category includes Hitch-Hikers Guide To The Galaxy and Stephen King's release from last year about the assassination of John F. Kennedy, 11-22-63. One of King's easier to follow plots, according to my husband who is a big fan.
Children's books are so important. I have recently read Alice's Adventures in Wonderland for the first time and listened to Winnie The Pooh. Reading series of them helps with choosing the next book! The Narnia collection has come back again and again as my husband and I both enjoy them and he has also read me Anne Of Green Gables, Avonlea, The Island, and beyond.
Every Christmas encourages a shared seasonal read in December; One Hundred and One Dalmatians and The Starlight Barking; Box Of Delights; A Christmas Carol; and the Harry Potter books always mention Christmas, so why not!?
Well that should be enough to keep you going!!!

Saturday, 23 June 2012

Which Books?

I know I have already talked about books. But today, after a couple of friends who also have ME asked me which books I would recommend for easy reading, I thought I would let you know which books I have read over the last few months.
One book which has been in my handbag and is a read for whenever we sit in a coffee shop and I feel like a page, a quick section or 30 minutes of light reverie is... The Chocolate Cake Sutra: Ingredients For a Sweet Life by Geri Larkin. This was a very well received recommendation from my Yoga teacher. It is written as a humorous autobiography through the author's life becoming and practising as a Buddhist priest. She is a single mother, a former company executive and very grounded, also having as many mistakes and failings as the rest of us- teaching us all the while to persevere, find your own space and come back to your roots; of breath, calmness and humour. I bought this secondhand from Amazon (somehow it feels even better in my hand, knowing someone else has enjoyed it too) 2 months ago and still have a way to go. Although only 182 pages, I am enjoying taking it in slowly and thinking over each story as it happens.
A couple of books specific to ME and chronic illness are How To be Sick, by Toni Bernhard and Why ME? By Alex Howard. How To Be Sick is a good grounding read which I have had for many years and keep returning to as a reminder of how to focus. Coming to terms with the illness is so important in ME- I always thought I had found peace, but inside I was still fighting. When you are ill, the instinct is to keep pushing, keep battling every niggle and prove to yourself and others that you're not giving up. By stepping back and accepting the position, you learn to listen to your body when it is telling you to sit down or ask someone else to help fill the dishwasher when you just have no energy. This book encourages the listening and helps you understand that you can step back without being a victim or a failure. Why ME? Is by Alex Howard, the founder of The Optimum Health Clinic. It charts his recovery from ME, from the darkest days at the age of 16 through to his early 20s when he found the spiritual strength to find some solutions. He and a fellow recovered ME patient began the clinic to help others and this book also charts the beginnings of their research and successes with their first patients.
I have also read magazines from here, there and everywhere in the last six months. Free supermarket magazines, hand-me-downs from friends, (my Mum even picked up complementary ones from the departure lounge when she recently went on a cruise!) magazines about my hobbies-even if I couldn't do much knitting, cooking or yoga I could learn from the page and keep up with current ideas and new trends. These are ideal to flick through in an afternoon when nothing else is really possible- also great for poor memory as the same article can be read over and over!
Currently I am reading The Art Of Effortless Living, by Ingrid Bach- on page 47 of 382, but liking what I have read so far. Also Yoga Nidra: a meditative practice for deep relaxation and healing, by Richard Miller and Mindfulness for Beginners: reclaiming the present moment and your life, by Jon Kabat-Zinn.
As these are non-fiction and more like study books I have been dipping in and out and reading a few pages at a time.
I'll write about some good fiction reads in tomorrow's post.

Friday, 22 June 2012

What's Up Doc?

Well Dentist actually! We're going this afternoon. It seems to be that for the last few years every day that we have had dentist appointments that I have been feeling awful and the whole experience wears me out so much I have been ready to burst into tears either in the chair or when I get back to my husband in the waiting room. We never have that much done. Our NHS dentist checks us and usually cleans. Another £35 from our monthly budget and hey-ho!
I must say I am not feeling much better this morning and anticipate a similar scenario at 3.15pm... I have only managed a little yoga in the form of poses this week and that was from the bed before getting up for breakfast. Any other work towards my recovery has been breathing and meditation exercises. Of course they are just as important and I do them every day anyway but it just feels so liberating to be able to move around the floor and give myself something to do.
One thing that my lack of energy hasn't helped this week is our lack of food. I have eaten most of the emergency stash- one lunch time I even had two small yoghurts, toast and jam, a banana and satsuma. I have a shop coming tomorrow, so hopefully our fridge won't be so depleted. I have felt so little like cooking this week my lunches and even breakfasts have been pretty much a mismatch of bits and pieces. I delved into the freezer this morning hoping to find inspiration. With no milk and only a crust of bread I was reluctant to make what would be a very flat tasting porridge or rubbery scrambled egg. I also knew actually cooking an egg was the last thing I wanted to do- I needed food and now! So the result was to not eat the portion of chicken, vegetable and tomato stew which cried at me from the corner of the freezer- I need that for lunch! but instead to finish an expensive and actually not too sugary vanilla ice cream, with a few blueberries, this weeks muffin (I even put it in the microwave for 20 seconds to calm down the shock of the cold ice cream!) and a sprinkling of brazil nuts and walnuts out of the cupboard. Boy, oh, boy will I be pleased to see that delivery van tomorrow!

Dentist wasn't so bad, I'm stronger by far than I was 7 months ago when we last went and thanks to the new electric toothbrush we saw as a necessity when I was so ill this winter my teeth are even cleaner than before. So no big ordeal and the Where's Wally poster pasted on the ceiling kept me occupied for the worst of it!
As for food, as the dentist appointment went so well I was able to consider a Walk, yes a Walk around Lidl and we stocked up with enough to feed us tonight and also for tomorrow's breakfast. Phew... and...relax...:0)

Thursday, 21 June 2012

Webinar News

Last night's webinar was, in part, about anxiety. It didn't all fit in with my ideas but was useful in some ways. I take notes through it when something might be helpful to remember, but I have my own take on this subject:
Anxiety in ME patients can be a big thing. Just the tiredness; never ending lethargy, malaise, jelly-like legs, all over physical weakness and cognitive exhaustion from the smallest stimulation, is scary enough. Who on Earth would ever imagine the body would be prepared to act like this? We're humans, prepared to fight, flight or freeze with intention at any threat. Could an ME patient do any of that? No. Being Scared, Frightened, Confused and Anxious is the obvious result. When I had so many symptoms, I needed toes and fingers to count them, it was mind-boggling. My seizures were especially stress-inducing as so many things could set them off, I was on the look out for triggers and how to avoid them constantly. The idea of coping with it calmly is practical: taking a methodical approach and dealing with each flare-up as and when it happens is fine, when two or three appear at once, it's difficult. When you have so many it's confusing and therefore causing headaches and anxiety, the idea goes 'out-the-window'! That's when a deep breath and a listening ear is necessary. And the big thing about this illness is realising when you need help. Be that from friends, family members or even a paid carer or counsellor. The faster you can offload symptoms and worries by talking about them or finding solutions the better your chances of less anxiety.
My anxiety is mainly about what I do when and where and also about a day when I wake up with a feeling of exhaustion before I have even lifted my head from the pillow. I have very little anxiety now, mostly just on bad days as my unconscious brain seems to think it is back in the old days- I have to keep reminding it that actually it is just an off day and it won't last.
When recovery begins it can be really scary to find yourself physically tired from activity. Tiredness has always been a bad thing. I have been getting used to physical tiredness; realising how lovely it is to put my head on the pillow at night and fall asleep because I am tired at the right time! Yesterday I was cautious as I was still lacking in energy, feeling listless, and spent the afternoon in the garden resting with music playing quietly next to me. When I fell into bed last night it took longer to fall asleep, I also woke up at about 5am and was tossing and turning for an hour.
Friends can be so useful in this scenario- distraction is a great way to reduce the stress. Items through the post can be distracting, not because it's a birthday or special occasion, but because you can't be there on the doorstep and want to make an effort. It can be as small as a joke on a postcard or as big as an audio book or DVD set from Amazon as a gift, or from your own collection on loan. Perfumed bath foam or soap is a nice idea but usually not practical as the skin can become so sensitive. Just a phone call, or message left on the answer phone, a text or an email with a funny YouTube link is a distraction and something that can distract over and over again.
One of the best books I ever found to help deal with the stress is How To Be Sick by Toni Bernhard. It helps the mind and body come to terms with the situation and the reality becomes more peaceful. A half-way-house has to be found at the beginning of ME (or for longterm sufferers like myself in the middle of nowhere when the right tools are in situ.). Sitting on the bottom rung of the ladder for a few months to find firm ground is a great stance to take. Once symptoms have abated, which might take a long time, the climbing can slowly begin more securely. But if the heart and head are starting from the right place and peace has been made with the situation, then sickness can become recovery.

Wednesday, 20 June 2012


I have been eating organic for years now. Always knowing that by reducing the toxins my body (and initially the Candida) had to cope with, the better chance I had of not dipping back into a really bad state again. I have not eaten everything organic. My staple carbohydrates have been so, for as long as I can remember. I buy organic, stoneground, without improvers, flour to make soda bread and any other household baking. I also buy organic wholemeal pasta and rice. Most of our potatoes are organic too. Butter and yoghurt, two other things I use every day are organic as are any biscuits I might eat. I try to find organic fruit, but buy British if not, as I know the regulations are stricter here. It is a difficult choice as far as vegetables have gone. When I was well to a certain extent 5 or 6 years ago we were getting a vegetable box delivered every other week and also buying from the local organic farm. However the cleaning of the vegetables and preparing took so long and I couldn't predict what would appear week after week- as you may remember I haven't eaten certain veg and no fruit for years because of the Candida. So a compromise has been made there over the last few years. If we can't find organic vegetables that have been cleaned or prepared we buy in-season British (I would probably do that if I wasn't ill anyway as it tastes so much better!). We have organic peas, and chopped veg in the freezer, also have some non-organic there too. It is convenience that has to rule now (as well as the budget!).
One last thing I would like to mention is the coffee that I am drinking in between sentences. It is organic decaf. The great thing about organic decaf coffee is that it retains much of the original flavour during the decaffeination process and the caffeine is removed much more effectively. So by using filtered water, instead of chemicals, to decaf the coffee, the taste remains and and I have no problems with sleepless nights. When I was starting to improve and stating to move in circles of people who actually drank coffee, (rather than cola or beer!) I really started loving the smell and also the flavour; this is is a great compromise and one I am most definitely willing to make.

Tuesday, 19 June 2012

Green Drinks

One thing I did not mention yesterday is that I had not just a muffin, yoghurt and decaf coffee for breakfast but that I also had a green drink. I don't remember this phenomenon appearing in my life before, I know I have had disgustingly sweet fibre drinks on prescription when I had real problem with my digestion, I've also drunk pure aloe vera juice which was quite putrid but did me a lot of good in healing my stomach lining, but these green drinks are something else.
It is recommended by some practitioners for those with immune system problems and real nutritional deficiencies. I don't have a bad nutritional intake, not sure what the experts would say to my 'near enough normal' blood tests, and as for immune system I really don't know and tests are expensive. As it is one of the less expensive nutrients and is taken by most who see ME specialist nutritionists I decided to have a go.
The powder that is mixed with water is actually green, mine is from barley grass. The idea is that the energy comes straight from the sun, into your glass, in the form of high amounts of chlorophyll. The young leaves are picked and freeze-dried and are therefore also full of fibre. I have been reassured that as I recover the taste will be more palatable and it will be an indication that I don't need it as much. Truthfully I can't say that I have seen a vast improvement in taking them. Maybe for someone in a lesser state of health than me it might have more noticeable effect. But the idea is to take it for 3months and as I am taking so many other steps to my benefit it will be difficult to say what worked and what didn't.
The drink is unpalatable as I can feel the grains in my mouth as I try to swallow it quickly. Mixing them in a smoothie just made the smoothie taste horrible. So I am not drinking them every day and have them before breakfast so that the taste can be nulled by the rest of the meal. I think I will try to finish the packet I have bought and leave it at that- probably 3 month's worth, which won't do me any harm and might do me some underlying good.

(I am feeling a little better than yesterday. My stretches in bed didn't feel so torturous and I am more dressed than I was yesterday. I still look a bit like death-warmed-up in the mirror and my throat is a bit sore, so will have another easy day and see how it goes)

Monday, 18 June 2012

Call It What You Will...

I am hibernating again. Probably due to last week's Now What? crisis.
Waking up is the most difficult thing. As my eyelids start to fight, (I know it's time to wake up, I'm feeling hungry- they may not quite agree!) my mind realises what is going on. "Oh crikey, one of Those days again. Be positive, stay optimistic, you'll get through, you have before. Why should the rest of the day feel the same as it does now" The problem is that the evidence is there. My limbs are limp. They don't want to move. Getting out of bed is usually an effort, but today is even more so. Without wanting to predict the future and be totally pessimistic a day started like this is unlikely to continue much better. I know if I don't get some kind of routine in before breakfast my day will feel even worse. Usually I have bathroom, dressed, yoga, meditation, breakfast.
This morning to help me out of bed and from the advice of my yoga teacher, I did yoga in bed first. Staying lying down to start with; watching my breathing; then just moving my legs a bit with my breath; sitting up and bending over so my head was lower than my heart and finally stretching out my arms and neck. All with the flow of my breath, so I felt more able to actually remove myself from the bed and get started.
My next thought was to eat breakfast and make it as painless as possible. Muffin, yoghurt and organic decaf coffee (it may not have the kick, but psychologically it tastes the same, so must have the same effect!).
Sitting here at the kitchen table with the iPad and keyboard I am now still feeling limp. My shoulders are slouching, although thanks to all that yoga practice, they are slouching backwards rather than forwards! My neck is having issues with keeping my head upright and my eyelids are still fighting! I have my legs up on another chair, I'm wearing thick socks, other than wearing them and a cardigan I haven't changed out of my pyjamas and have a cushion supporting my lower back. I'm feeling very sorry for myself.
Why am I sitting here rather than in bed? I realise that I must at least prove to myself that I am better than I was 6 months ago. I am typing, that is a big thing. I am sitting in a chair. I am enjoying the view from the kitchen window.
One day this week I will wake up and feel lighter, removing myself from the bed will not be such a hard task and my morning routine will get closer to my ideal. So I need to be kind to myself today, maybe tomorrow, maybe for the rest of the week. Thinking about how long it might last does not help, I have to stay in the moment and fill my time, as much as I can, with comfort- audio books, Pride and Prejudice, Sleepless In Seattle, also knitting and playing patience, if I can. I also intend to ring a couple of friends to fill the time and to hear another voice.- I'm welling up already!

Sunday, 17 June 2012

Now What?!

I am sitting in bed, Saturday evening, watching Pride and Prejudice-the BBC Andrew Davies adaptation- a favourite viewing for rest and recuperation.
Had an interesting day yesterday which will explain why this piece will be so short...

Quiet morning, lunch at a friend's house.
I knew I would have a restful afternoon so was not concerned at how I needed a rest. My husband was going to a funeral at 2.45pm so I was assured of peace and quiet. As he was leaving he had an altercation with next door's car and damaged both vehicles.
I will not explain why, but take it as read that my husband needs help dealing with this kind of issue and therefore I had to find more energy. Firstly managed by bursting into action, then tears and then calm-ish (more so as the afternoon went on!) organisation
To cut a long story short, we managed the problem going to a garage, a bodywork specialist, ringing the insurance brokers and talking to two different insurance departments, relaying the story twice (why?), ringing the neighbour's brother, whose car it had been and had since left and then agreeing to a takeaway for tea.
By dealing with it all yesterday afternoon we both had a reassured night's sleep and a worry-free weekend ahead. I am just coping with it today with 3 hours of sleep this afternoon and a need for hot water bottles and reassuring TV from about 1pm onwards!

Saturday, 16 June 2012

How Am I Doing?

I am constantly asked, "How are you doing?". It is so difficult to answer. Everyone who I have seen this week has said, "How Are You?" I'm pleased that people are asking, it means that they care, to let them in my house I know I can trust them to take what I say as the truth. They are asking because they want to know, they are maybe noticing a difference and want me to confirm it!
As someone who has been ill for so long I have never been able to say what I do now. Always I said, I'm coping, I'm surviving, I'm happy. But maybe not really believe it myself- it was more a defence mechanism to avoid the cold, hard truth. I knew I should be feeling those things and sometimes I was, but it was so hard to force myself into that frame of mind. After all, I was ill, never to recover unless some miracle came about in immune system research 10 or 15 years down the line. I had always imagined that recovery was a long way off; out of my reach and my doctors agreed.

So how am I?
I am believing in recovery. I am feeling good about myself. I am happy. My husband is very supportive and I can bounce ideas back and forth with him. The internet has given me so much, some websites are ideal for printing off the text to read later, in a larger font size. Also I now have a list of books to read. These biographies and self-help books (yes I admit it I am reading self-help books!- I never imagined I would go there!) are ideal reading with my concentration and memory. They give me a chance to dip in and out, I have different books for different occasions, suitable for different levels of tiredness. They might each take me a few months, but the intention and confidence is there.
Physically, moving around and daily living, I have improved slightly over the last three months. Looking back six months I am improved very much. I am getting dressed every day, even for just a few hours. 3-4 days a week into yoga pants and top with cardigan, other days into comfortable linen trousers or skirt to leave the house (this is obviously a lot easier now that the weather has improved and I need less thought about layers all over my body!).  I can help around the house a little, I'm finding ways around using the kitchen, gadgets and pre-prepared food from the shops. A  bag of chopped salmon out of the freezer thrown in the frying pan with cherry tomatoes, left for a few minutes before turning over, then served with a ready to eat bag of salad is plain, but tasty, slightly more expensive than organising it from scratch, but it means I can actually achieve the ambition of fending for myself. I am focusing on pastimes that I enjoy. Knitting a little, 3 or 4 times a week if my arms let me. Using the internet to bombard my knowledge with extra tips on recovery. Yoga and meditation. Sitting in the garden, with or without a magazine or book. I talk to friends on the phone somedays, I can talk to my Mum for an hour, also my sister. I am myself with them and have to make no compromises. A couple of my friends are like that too and I can find that really helpful for 20 minutes. I am usually in bed most afternoons if the garden isn't warm enough(or it's pouring with rain!). Every day I am usually able to find what my body wants and answer the suggestion, without frustration and I am noticing little things saying "you're doing the right thing".

Friday, 15 June 2012

Audio Books

I mentioned yesterday about listening to Harry Potter and The Chamber of Secrets. Audio books have kept me going for years. Sometimes they are live, sitting on my sofa- my Dad used to read to me every lunchtime. We would watch Working Lunch together- oh yes I had sorted my self out with a pension from the age of 25 thanks to the gurus on there- while eating our lunch and then he would sit and read to me. We went through Treasure Island, 39 Steps, Robinson Crusoe, lots of classics. Also the Harry Potter books when they first appeared (my husband continued with that tradition when the final few were published).
The difficulties, of reading to myself, were varied over the years. Focusing on the page was sometimes difficult. Dizziness would result in me trying to read with one eye open and one eye closed. Nausea would also set in quite quickly after 15-20 minutes. The biggest problems, which are also occurrent now are the lack of short and long term memory, and poor concentration. I can read 3 pages and realise that I have taken in only one paragraph, constantly turning back pages and getting nowhere fast isn't particularly helpful. The tiredness can cause such bad concentration that I might need to give up for a couple of weeks- by which time I have forgotten what I have read so far! My cognitive ability is improving but I still have to see what happens, some days are better than others and non-fiction is easier to read as are books of letters or short chapters and children's books
My husband reads to me now most nights before we turn out the light. It is a great way for me to keep in touch with literature and remember some of my favourites. With such a poor memory I can enjoy the same book a couple of years apart and it will seem completely new to me. We switch between drama and comedy, sci-fi and classic, also reading a lot of children's books for a gentle interlude occasionally, we have gone through the whole Narnia series and also Anne of Green Gables. Every Christmas we come back to a seasonal tale- last year it was 101 Dalmatians, the year before The Box of Delights and before that Harry Potter, preceded by Narnia. (I can remember that but very little of the contents of the books!)
Listening to reading also came in CD and cassette form. Mum would look out for free ones on the newspaper and I bought a few magazines when a series came out of Classic stories. My favourites became Tess Of The D'Urbervilles, Rebecca and Jane Eyre. The incidental music and the tone of the voices became a familiar comfort after a while and if I heard nothing else the background sound of it would lull me to sleep on difficult nights.
I'm listening to Radio 4 Extra a lot, which has book readings and dramatisations- usefully in 15 minute chunks and also available for 7 days on the internet radio via iPlayer. I have also found a couple of websites which have unabridged downloadable readings of books which are in the public domain. Most recently I have found The Secret Garden by Frances Hodgson Burnett. A childhood favourite, I was over the moon to have a new voice read it to me like Jackanory all over again! These times are more for comfort and familiarity than study or great significance. Books just give me something to look forward to, to see the time pass, another daily foothold which has nothing absolutely to do with me being ill.

Thursday, 14 June 2012

My Day Continued

5pm woke five minutes ago from a dozy, sleepy afternoon, drifting in and out of unconsciousness with The Chamber Of Secrets continuing beside me, keeping me sane.
8.30pm woke at 8pm after more drifting in and out of The Chamber Of Secrets. At 5.30pm I began feeling very strange, mixture of dizziness-without the vertigo, nausea and foggy head syndrome(yes, I just made that one up!) still not feeling great, so sitting in bed, continuing to listen to Stephen Fry and obviously typing! I try not to sleep after 6pm unless something is desperately wrong as I will usually wake by 10pm and then loose my sleep routine for the night. So bed it was and shall be for this evening. Unlike usual I am not watching TV while sitting/lying here or trying to do any reading or knitting.
Next Day
So had a good night's sleep, only punctuated by one of my hot water bottles bursting at about 9.30pm. I was saturated, as was the main sheet and mattress cover. Action stations worked quite well and the bed was half-changed, as was I, within about 10 minutes. I then quickly went online and ordered three new ones from Amazon. They are particularly budget friendly! at this time of year and we always need a stash of spare ones for incidents such as these. (failed last night!)
It is interesting to document a day such as this. In the week of an ME patient, even one who is recovering, there are days of calmness and days of confusion. Yesterday was unusual in that I slept in the evening, but not unheard of. I usually have an afternoon sleep 4-5 days a week, of an hour or up to three hours. Otherwise have an inactive resting morning or afternoon; I'm lucky in that sometimes I can choose if a friend or appointment requires the day to be flipped.
Asking why days like yesterday happen is usually not a good idea. Analysing and questioning such things can be overly exhausting. Maybe I ate something that didn't agree, maybe I slept in an odd position in the afternoon, maybe a yoga pose was too much, maybe I lifted something at the weekend that is just starting to show itself as an unwise move. It could even be something completely beyond my control- likely candidate hay fever, as my eyes are sensitive and my sinuses have been aching too- washing my hair might help and changing the bed clothes again. I am unlikely to know. If I keep listening to my body and follow my best options as well as learning a little bit every week if it feels right, then I will be doing my best. "do your best, leave the rest!"

Wednesday, 13 June 2012

What Do I Do With My Day?

8am Woke up
9am On living room floor practising yoga
9.30am Meditation followed by Breakfast. Blueberry/yoghurt/milk smoothie- thank you Kenwood blender. This concept of eating protein to stave off the blood sugar lows is great, such a simple thing for breakfast will keep me going for hours.
10am Checking emails and typing at Kitchen table, whilst listening to Simon Mayo's Confessions podcast.
11am Just finished talking to a friend, who popped in at 10.40 for a quick chat and "how are you". Also managed 5 minutes lying on the floor after a parcel came in the post- a new yoga bolster pillow. Ideal for putting under the knees to ease the back when lying on the floor. Wonderfully relaxing. Going to do that again now, with a Yoga Nidra meditation, am feeling sleepy...
12pm That was quick! 45minutes of meditation and a ten minute yoga stretch for my tight neck and shoulders. I should probably say that yes I rolled my shoulders and bent my spine over and back, but the fact that I was concentrating on my breath and coinciding the movement with the inhaling and exhaling makes it a yoga 'union' practise. Will check email-expecting something from a friend-, read a bit of pdf leaflet I downloaded about ME.
12.30pm Lunch! I deserve an omelette with bread or toast. My omelettes are very unsophisticated, like a lazy scrambled egg. Break the eggs into the pan after frying up whatever I might choose to add as an extra, then swish them around a bit and leave to cook for a couple of minutes! (Eyes starting to droop!)
1pm finished lunch, yum; put half a tin of wild salmon in the pan before the egg, also swirled a bit of spinach round the pan once the omelette was on the plate. Brilliant menu, most of it completed by sitting at the kitchen table waiting for everything to cook! As it is so cold today- 12th June, WHY!!!- I also had toast instead of bread. (eyes definitely drooping, will wait for OH to ring for our daily lunchtime chat at 1.25 then have a rest) going to find my pyjamas and fill hot water bottles.
2pm managed the chat, change into pyjamas and a bit of a rest, then an unexpected visitor-my brother showed up on my doorstep. It is very difficult to say "no" when you see someone so rarely, so we sat at the kitchen table and my eyes drooped more and more. I was able to hold the conversation together though and was pleased to see him.
2.30pm I have fiddled a little with the Hampshire County Library website and downloaded the second Harry Potter book. Stephen Fry's dulcet tones will keep me company for a while now... To be continued...

Tuesday, 12 June 2012

Yoga Marathon

I mentioned that it was my intention on Friday morning to attempt a yoga mini-retreat. Yes I intended and I succeeded.
Don't get me wrong. I am not talking about 3 hours of American-style aerobic non-stop yoga, without pause for breath and sweat dripping off me in bucket-loads. This was calm, focused, easy, beginners yoga, with poses and counter-poses, meditations and breathing exercises. As I wrote to my husband in an email at lunchtime Friday; "Completed a three hour yoga marathon! Without one breathless, ouch or creaking moment!"
What really helped me in this was something I learned during the week from a study I was reading, by Dr Nancy Klimas. Dr Klimas runs an ME/CFS treatment clinic in Miami and has completed a lot of research on the subject, at the University of Miami. Her studies have found that the crucial thing about doing activity, and doing too much activity in ME patients is the way that the breathing and heartbeat are working together. As soon as aerobic activity becomes anaerobic activity (which can be in as few as 2-3 minutes) the cells in an ME patient need to search for more energy and start using reserves which simply aren't there. Only by limiting aerobic activity, to that short amount of time and interspersing it with equal amounts of time spent resting, can the cells regenerate energy, without seeing the desperate daily or hourly crashes and exhaustion. Until I see a vast improvement in my energy levels, which will suggest I can last longer in aerobic activity before moving into anaerobic activity, will I let myself get breathless without checking in and slowing down or resting.
This is probably the main reason that so many patients have recovered from ME by practising Yoga and slowly increasing their stability. If you can breathe you can practise Yoga. On a bad day, I know I can lie in bed and practise breathing and also meditate.(that sounds daft-I do know how to breathe!) On better days I can hold poses and stretch my limbs out to encourage flexibility and slowly iron out all those creaks and aching joints that still haunt me. I enjoyed Friday's mini-retreat and until I can make it to a regular class with a hands on instructor to guide me through some of the more complicated poses, I intend to continue as I am with my new accessible technology-wise classes and a friendly Yoga website to answer any questions should I have them.

I have been using these two wonderful websites, with YouTube and iTunes podcast links, and both have answered any questions whenever I have asked
Yogaempowered (link)
And Namaste Yoga (link)

Monday, 11 June 2012

Time Shift

Three Months ago...

I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there? 


It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.

Sunday, 10 June 2012

The Daily Experiment

It has been a strange week. Good week. Feeling like walking on egg shells constantly. Every day has brought something new, I have been tentative and brave accordingly. A new rule with my husband is that he will never ask me if I want the wheelchair he will always presume that I do; I can make the decision without any pressure. I did a bit of walking last weekend, again no traffic and very few people so I did quite well and judged it well with rests.
I was still feeling, last weekend, the impact from the previous week's hot weather and took a lot of rest time to manage that. My nights were pretty bad, with vivid, running from a tiger, dreams. So waking up for most of the last week has been a relief, but not really akin to a good start to the day. In that respect I have struggled with routines too; barely in the mood to drag myself out of bed, let alone think about following any kind of plan for the day. The Bank Holidays (and whenever OH is at home on a week day) seemed to totally mess me up. It was a struggle everyday, but I managed to convince myself to just float along, enjoying my extra support over that longer weekend and then a chance to have my own space Wednesday and Thursday.
I achieved that 10 minutes in the garden on Wednesday, then made myself a sugar-free cake with carob chips. On Thursday I made biscuits for my husband to take to work, really sugary so will avoid them myself. Both days I slept in the afternoon and managed a short yoga routine and meditations.
On a weekly basis I have been attending live 'webinars' with the founder of the recovery programme I have been using. This week's was about meditation and it really encouraged what I had been finding in the previous days. When I had woken with so little focus and motivation all I could find in meditation was a crazy thought-filled head, going nowhere fast. All I had to do was lie on and let it be busy, prove to the head that the body wasn't going to get involved. We also touched on yoga as an exercise as well as a meditation option. I was very much encouraged to investigate this even more and did a bit of searching for some more DVDs or websites to help me. Finding and getting to a quiet, gentle, beginners class with laying down encouraged is not something I desperately want to attempt. I want something aimed at the fatigued, those in recuperation, who don't do much standing or walking and creak when lifting a tray of biscuits from the oven!
So I found something. A great company in Canada, which has sponsorship and takes donations to put free classes online. They are on iTunes and YouTube, under the umbrella of Namaste Yoga and Dr Melissa West. Three new videos have come out in the last week aimed at absolute beginners and in the back catalogue I have found various breathing and meditation based lessons too. Each session is about an hour, so having done lessons with a teacher and practised a lot more by myself, I was sure they would suit me and I could cope without a personal instructor. Realising how difficult I had found it on previous mornings, I set myself a challenge on Thursday evening; to wake up Friday morning and have a smoothie for breakfast, followed by a morning mini yoga retreat in my living room. I did it. With lying, breathing exercises, meditations and about two half-hours of gentle poses, I did almost three hours with the help of two of these new videos and felt much better as a result.
So each day is a challenge, I just have to keep finding new ways of creatively dealing with them as they try to bite me right back!

Saturday, 9 June 2012


I love the internet for this reason if nothing else!
I can and do shop for everything on-line. From shoelaces to spaghetti, from lightbulbs to lawnmowers. The funny thing is that when I search and search for something, which I think I should easily pounce on in the local shops, I end up going straight to Google after three weeks of desperation and find it after a few clicks. We dropped a melamine tray last summer, which was intrinsic to my way of life at that time. Eating in bed, on my lap, was the only option. I needed my head, neck and back supported completely and a few thick layers of duvet and blanket over my legs. This tray smashing on the kitchen floor gave us a reason to leave the house. 'Oh, great' I thought,'I can enjoy choosing one from a shelf in a department store, or kitchen shop'. "Oh, no I couldn't"- I could hear the audience chanting back at me, pantomime-style, as we couldn't find suitable alternatives anywhere. After all this excitement of going to a different shopping centre and collapsing in bed week after week, I went back to my favourite stalwart Amazon, and there they were teasing me from the page!
Researching shopping is also a must when finding clothes or shoes as the process can take such a long time and a lot of energy otherwise and I cannot take a long time, or a lot of energy! (neither can my husband's patience!) If I would prefer to try the items before buying, or the postage costs are extortionate, I find the shops, check their stocks and we appear, try and buy, if they are suitable.
I now know the local shopping centres which are accommodating to my needs; good parking facilities, flat pavements or walkways, without cobbles and only slight slopes for using the wheelchair. So always check which town we will visit to achieve the most.
The beauty of me being at home gives me the opportunity to have items sent through the post and returned if necessary. Larger items (most recently the food mixer and a new toaster) which we would otherwise have to balance on the back of the wheelchair, or on my lap, can be delivered without concerns of no one being home to sign for the items.
Food-wise I shop regularly using iPad apps, which give a quicker shop- as if I was in the store. I can usually read full lists of ingredients and also choose most of my shopping from the monthly offers. Some of the more exclusive foods can be found in health-food online shops with supplements and, as with searching out the trays, I might be going in dozens of different shops before finding what I prefer.
Thanks to Google, Amazon, Ebay and many others, my life can be a lot more focused on recovery and careful pacing than it might be otherwise!

Friday, 8 June 2012

Eating From A Menu

Yes, I do get out of the house sometimes and it is a great way of remembering a month, or a Bank Holiday- we couldn't consider really joining in much of the fete, picnic, music festival Jubilee celebrations this last weekend, it would have been too overwhelming. So many people, "how are you", "lovely to see you", is great but emotionally tiring. Also moving around crowded places with the wheelchair can become stressful and memorable for all the wrong reasons. We escaped on Monday afternoon to a nearby historic town, enjoyed seeing the Jubilee decorations along the high street and went in a few shops, then sat in a pub for an early tea. It will be remembered for all the right reasons.
Eating out can be difficult for so many people on dietary enforced regimes. For ME sufferers eating can be difficult in many ways. Choosing from a menu has to be carefully done, occasionally slipping from the diet works, but only sometimes. Anti-Candida diets are regular in ME patients(see my earlier post, Chocolate Wednesdays) also simply going back to basics as the digestive system has so little energy- digesting food might seem a priority, but think about making sure the heart is beating, the lungs are processing oxygen and sending it to the brain, blood sugar keeps the extremities in working order and prevents fainting. So many things take priority over the digestive system in ME that actually taking nutrients from food becomes an option rather than a necessity.
Simple food is the answer, without dressings, strong flavours, and refined sugars or grains. Avoiding dairy and wheat is sometimes necessary, but can usually be reversed as the body recovers. Lighter meats like poultry are eaten in preference to red and processed meats and fish is a preferred option too. Root vegetables such as carrots, parsnips, swede and turnip have hidden sugars which are especially concentrated if they are oven baked, as do squash and pumpkin. Raw salad is one of the rarest forms of foods, but actually takes a lot of energy to digest; eating it can take as much energy as can be gained (the stomach usually gives up and processes it rather quickly!). If salad is offered as the side order for particular dishes, I just ask for it to be replaced with plain vegetables (and am usually given peas, carrots, broccoli)
The actual process of eating needs to be considered. The carbohydrates I choose are mashed potato, or potato wedges. Mash is easy to eat with a fork or spoon and wedges are quite simply finger food (or stick-it-on-the-end-of-your-fork-and-bite-pieces-off-it food!) Short grain brown rice is one of the easiest to digest foods you will come across, so is great as a daily option. (brown rice flour is also available) Wholemeal pasta is another simple option, fork food. Last Christmas we went out with friends to a local hotel for a Christmas dinner some time in December. It was a lovely treat, but I found it exhausting. The turkey and stuffing were difficult to slice, and the vegetables were cooked in large pieces which, as they were cooked to perfection and were consequently still crunchy also needed to be cut up, and well chewed. My husband ended up cutting up some of the food for me (as if I was a five-year-old!) so I could lean my head in one hand, with elbows on the table, and use my fork in one hand. My jaw hurt on this and other occasions too, when the food is tough and needs processing in the mouth more than usual!
For these reasons I usually opt for fish, or chicken. Also a soup, if it is suitable. If the venue is offering it I have finger food, such as chicken or fish goujons, from the starters menu and a side of vegetables to go with it; generally the price then matches that of a main course, as does the amount of food. Mild curries are good too as they are one-handed feeding options and the meat or fish is already in small pieces, also the case from a plain Chinese dish. I ask for brown rice, which is sometimes available-if you don't ask, you don't get!
So eating from a menu is possible, just confusing at times. And the confidence to sit down in one restaurant, read through the menu, decide the options simply aren't suitable and walk out to find other place to eat, is recommended too!

Thursday, 7 June 2012

Life's Necessities

The dishwasher is humming and swirling as I sit here with the keyboard and iPad. This is the result of careful planning which we initiated in January. Yes, it had been a bother for my husband to stand and wash-up everyday for the last seven years of our marriage. The worktop in the kitchen was usually piled high by the time the evening came, from the day's cutlery, pans, plates, bowls, as I couldn't help with the clearing very often. As the months went by last year, I was needing more and more care and was able to contribute around the home less and less. Also because of this, my OH was spending more time in the caring role, so fitting in household chores was becoming impossible. I found it difficult to lift washing from the laundry bin and it was unthinkable for me to empty the washing machine of wet laundry, to move it to the ceiling airer. With a small kitchen, no airing cupboard and very little storage elsewhere there was only one solution- remove cupboards and cope! We now have a slimline dishwasher and 7kg tumble dryer and I am ever thankful. A couple more cupboards have been fitted on the wall, and we have managed with slightly less space by putting a couple of baskets on the top of these units.
It is great that we have lived without these for so long; electricity costs, replacement and maintenance prices are ever rising, but I now see this as a necessity and I have moved this into other areas of my life too. Just little things can give me time and space for the more important activities. Brushing my teeth used to be so difficult. I was sitting in bed with the brush and a beaker of water most days as I couldn't stand in front of the sink. I now use an electric toothbrush and find it much easier- the pressure on my arm muscles and joints was becoming excruciating at times, which meant that toothbrushing was no longer a daily activity.
The iPad that I use daily has become my passport to the outside world. I have a Bluetooth keyboard which I use regularly to save my wrists from the strain of using the touch screen. Before tablets entered my world I would sit in front of the computer with my head leaning in my hand, supported by my elbow on the desk. I would type one-handed and within about 20-30 minutes I would also be shivering and suffering from back-pain! I still do this if sitting at a table sometimes- I don't notice it as it is such a familiar pose, but when I do, it is a good indicator that I need to leave, rest and possibly sleep!
Other things that have changed in our lives include having a regular cleaner, again to take the burden from my husband. Little gadgets around the kitchen- the mixer, a better tin opener, for example. It is thanks to tax-payers money-my parents, sister and brother regard it as their taxes!- that I am able to support my life in such a way. Applying for benefits can be soul-destroying as it is an admission of your disabilities, but it has given me the opportunity to live an easier life in the home- and also pay for the private healthcare that will see me eventually recover and start paying my own taxes!

Wednesday, 6 June 2012

Should I Or Shouldn't I?

That is a phrase which I have to expel from my life. I am being taught from all sides (not least my body) that I shouldn't be living by shoulds!
Listening is important, but it is something I have to learn in a new way. Pushing, completing a task, doing well, earning accolade, is a lesson we learn from childhood, it is discipline, determination, drive, making a decision and sticking with it through to the end. I am learning to take a step back, admit when I might not complete a task and be happy with the result as it is.
This morning I went in the garden, the purpose of which was to either walk around or sit under the elder tree and enjoy the view. Did I complete these tasks? No. I noticed the parasol lying by the shed door (it had been there all weekend, getting a right soaking- thankfully it is waterproof!) I leant down, picked up one end, let the water roll from its folds and opened the shed door to put it in its proper place! As all shed owners will know, as soon as the lawnmower has been in and out a few times, a child has dragged a few items from the depths and returned them, a few tools have also been used (and punctured a bag of compost!) the shed it not in quite such a tidy state as it might have been!
What did I do? I stopped, stood still and thought. It was 10am, I had not done anything which might be described as energetic this morning other than organise breakfast and a few yoga poses. So I eyed the view- it wasn't too bad. Stand a few folding chairs upright, move a few tools to reduce the clutter, pile the compost (we have small bags of compost, which has to be mixed with water before using, so they're not heavy) and replace the toys in one corner of the shed so they can be easily found. Yes, achievable. I did it.
Next I walked, to sit under the tree. I saw three thistles in the herb bed just about to seed- Yuck! Could I dig them out, without getting too involved and using too much energy? Yes, the roots are thankfully very short as most of their energy comes from the sun, like sunflowers. Back to the shed, out came a fork. (one regret, which I will remember for next time, is that I didn't get the smaller fork, it would not have been so heavy) It didn't take too long to dig out the thistles and a couple of other weeds. I used the fork, so didn't have to touch the thistles or bother with finding gloves. Our purple sage, fennel and chives, and hebe at the back, looked much happier.
My body began to tell me that was enough.
I listened.
I stopped, put away the fork, walked inside and saw that I had been less than ten minutes. Well done. I would have patted myself on the back if I could!
So I had discipline, determination to a certain extent and I earned myself an accolade. I didn't push myself neither did I decide on my task before starting. I began, listened and finished when necessary. If this had been three years ago I would have been pushing, driving, forcing, clearing more of the herb bed, or at the very least falling into a heap with the feeling of failure when I couldn't! I didn't know there was another choice. No one could recover from ME, I had to live with it and lump it and wait for a miraculous cure 15 years down the line. My discipline then would have been to do this today, tomorrow and the next day then spend a week in bed afterwards, crashing- but the job would have been done.
I am learning to live without shoulds and musts and accept things as they are. Believing all the while that recovery will find me and I have to accept that as and when it comes too.

Tuesday, 5 June 2012

So Many Options

Because most health authorities have very little proven treatments for ME, it is usually up to the patient to go it alone. With a little guidance from the GP or friends and the internet we delve into our pockets and go private!
So where do we go? Over the years various complementary therapies have appeared throughout the world as treatments for ME. Some are more well known, Mickel Therapy, The Lightning Process, to name but two. Most are clouded in mystery to prevent word getting out and losing money on actually providing the service. Where Adrenal Malfunction is sited as the reason for ME, there are Neuro-Linguistic Programme based courses, as well as Emotional Freedom Techniques. Some of these have larger success rates than others but it is difficult to give numbers- about 30-40% recover from just using these options, some actually regress, during the course or afterwards and some stay pretty much the same. With 60-70% chance of me handing over £600-£1200 with no real comeback and a large debt on my mind, I decided against these options a long time ago.
My journey away from the NHS, on the advice of my GP, began in 1993. I visited a complementary medicine practice, which ran studies whilst treating patients (The Centre For The Study Of Complementary Medicine). This is where my Candida was diagnosed and unfortunately we discovered that until this had abated I was not going to absorb many digestible(!) supplements no matter how many pills I downed (oh, yes I was rattling at one point!). A possible leaky gut also explained the toxins which seemed to be swimming around my body. (This physical stress could also have explained the increase in my Epileptic seizures at this time.) I was offered supplement drips of Vitamin C as an alternative, but as it took so much effort to get to the clinic and my seizures began increasing even more, this was cast aside.
Over this time I saw an NHS psychiatrist, as I did feel very alone in my struggles, but handled it well and certainly offloading everything once a month was not a bad thing.
A few years later I saw a private nutritionist. We cut out even more of the candida feeding foods- namely all dairy and raw vegetables (I still don't eat cheese)- I used Aloe Vera drink to heal my stomach lining and more probiotics, this time in doses never imagined before. This seemed to work and I have been improving in that way ever since- as you will know I am now eating occasional muffins (and had a piece of Jubilee victoria sponge!).
I have had so many options to choose from and having done so much reading about the recent research at Newcastle and Miami Universities, in particular, I decided a full-rounded approach was what I needed. So those that just tackle adrenal fatigue or digestive problems, for example, were not for me. At the end of last year I had gone 12 months with only 3 seizures, all of which could be put down to obvious abnormalities in my life, so I was finally getting good control of my Epilepsy. Just going on holiday, or having a stressful week would bring on a few seizures before, which would totally upset my ME recovery progress and other than sorting out the Candida our focus had been the Epilepsy for a few years. This gave us hope that we could start to tackle the ME again as a separate issue and really get to grips with it.
In January this year, after a Christmas holiday of research, my husband and I decided on starting by myself and slowly using more tools as I improved. I began meditation every day and also regular gentle yoga. I started using The Gupta Programme (link) in late March, when I had found a stable ground and was ready to start climbing again. This programme uses ideas similar to The Lightning Process, but gives a much bigger picture and most importantly recognises the physical limitations of this illness, also encouraging careful pacing and meditation. ME is a physiological condition and although The Gupta Programme works with the theory of the brain controlling the body, the understanding is that these are unconscious physical patterns, started and repeated, just as a baby starts and continues to breathe as it enters the world, from the limitations and physical symptoms of the illness and original virus or physical trauma.
I am now also working with The Optimum Health Clinic's 'Secrets To Recovery'(link). This offers advice on specific supplements to take and where to find them, also advocating meditation, yoga, EFT, it has a fully researched guide to pacing, and it has a whole host of recovery stories- ideal for a bit of motivation on those not-so-good days.
So, currently I am spending less money than I might have done and feel I have a fully-rounded approach to my recovery journey. It has been difficult finding and choosing my options, but I have re-started that journey and intend to continue.

A good guide to various complementary options is here at the Action For ME charity website.

Monday, 4 June 2012

What Is ME?

This is a question that can have a very simple answer or a very long winded answer. The simple answer is that ME, Myalgic Encephalomyelitis, it is a chronic neurological illness. Before I boggle your mind with the long winded symptom answer I would like to boggle your mind with an explanation about the title of the illness. Myalgic Encephalomyelitis came about in 1956. It had been recognised as an illness for many years, possibly even centuries, but this was the first time it had a name. Two UK doctors performed examinations and post-mortems and found inflammation of the neck, brain and spinal column; Encephalomyelitis. This name was paired with Myalgic to describe the muscular pain. Some patients may also have different titles for the illness. CFS, or Chronic Fatigue Syndrome, is a title coined in the 1980s by insurance companies in the United States of America. ME was costing too much money and a solution was sought to solve the expense. By coming up with a new title, more people could be described as having the illness and the view could be introduced that psychological causes and treatments could be the only path to take. The expense was therefore handed to another authority and the burden of physiological tests and trials were no longer the first instinct of medical practitioners. Chronic Fatigue is a symptom of so many other illnesses, cancer or liver failure for example and this created a great deal of misunderstanding about the original ME. Many people with CFS have these underlying illnesses that need addressing which can be dismissed; so by being given this title it is thought to be 'all in your head'. Others with CFS should be given the diagnosis of ME and will then, by some doctors, have a fuller and more rounded treatment programme. Of course all of us with ME will still come across doctors, friends, family and complete strangers (even complete health authorities) who will decide that for us it is still 'all in your head'! Other titles for ME include CFIDS, Chronic Fatigue Immune Dysfunction Syndrome and less frequently PVFS, Post Viral Fatigue Syndrome.
So the long winded symptom answer... I will now attempt to explain in depth how varied and wide ranging the symptoms and consequences of this illness can be. It is very misunderstood. As when someone who is undergoing chemotherapy may wear a wig and take great time and effort on their appearance when leaving the house, a patient of ME will only ever leave the house at their best. This may be a few times a week, once a week, once a month, or only ever to visit their doctor for a 6-monthly appointment. To leave the house takes preparation for many days in advance. A wash with a sponge and towel while sitting in bed may happen on the morning of the event. Hair wash may have happened two days before. A very light routine will have been needed for many days, almost as if saving all the energy in advance to be used for this two hours when leaving the house. Many options of clothes will have been thought through for days and maybe weeks, as temperature, weather patterns, comfort and ease of dressing are all part of the process. For this reason the outside world does not see the true consequences of ME. So much of the illness is hidden. What is hidden is how when entering the house there maybe a collapse in a chair, 3hours sleep with hot water bottles, blinding migraines, pain killers taken 4times every day to lighten the joint and muscle pain, with skin sensitivity close to having an annual flu bug on a continuous cycle. Indigestion can be chronic and leaky gut is common. Muscle weakness, including the cardiac muscle, limits activity beyond that which would be restricted by any consequential pain. A lack of sunlight can send some patients into depression as can the lack of contact with the outside world. This only causes more confusion and misunderstanding from those who are around you, as surely depression causes tiredness too, in that case 'you just need to snap out of it!' ME is so different. Anti depressants may give you a better view on life, may help you see things from a glass-half-full perspective, but it will not take away the other symptoms to any great degree. Other symptoms can include seizures, paralysis, low blood pressure, poor blood sugar regulation, hair loss, the list is endless and different for every sufferer. Each one of the symptoms can cause separate secondary symptoms and illnesses causing even more confusion. After such a mind boggling explanation all I can add is that in some ways I see ME as my body screaming at the top of it's lungs in an "I can't cope anymore!" gesture. I just have to learn how to scream right back "I'm not afraid anymore!". Over the years I have found this easier at some times than others and with having had ME for so long I am starting to say it more often and my symptoms are becoming less. It has been a long hard struggle with one thing attacking me from one side while my mind has been occupied with another alien invasion on the other. I have decided to let these invasions float on by and the aliens are starting to find that they need to search for a host who would be more inclined to have a battle.

Sunday, 3 June 2012


This is a stage of the illness which can come and go, but is generally the first initial realisation of having something seriously wrong.
The Crash stage is defined as absolute exhaustion, total and utter desperation for relying on others and no real chance of achieving anything through the day.
The main problem for this stage is that action has to be taken to remove yourself from it. All obligations have to be cleared and bed rest is the answer. Crash leaves muscle aches, headaches, joint pain from slightest movements, possibly even constant nausea and very little energy to eat and digest food and drink- for this reason indigestion is another symptom that will rear it's ugly head.
Bed rest can be boring, tedious, never-ending; leaving a feeling of desperation and through this a glimpse of optimism has to be found somewhere. Acceptance of the situation is the first step- which might take a coupe of days as dips and crashes can be confusing, usually for me a sore throat is the first sign that something isn't quite right. After acceptance come action: sleep, rest, sleep rest!
It is at these times when I keep in touch with the world through TV and radio, newspaper reviews and weather forecasts. Looking forward to particular programmes everyday, but avoiding depressing soaps and films. Chat shows and magazine shows are great for the short attention span needed and I would also watch DVDs of TV series - again looking forward to the next episode as it helped the time pass. I also joined Facebook so that I could become part of daily life and find out what friends were up to just half a mile away. Emails everyday, or when I was able, became a good source of encouragement too.
It may seem like a giving-up option, but when bed rest is needed, for the body to heal this is a good option. By scheduling a sleep every afternoon I had a good indicator of when more activity can be added. As the weeks went by I noticed that less and less sleep was necessary, so I added little activities instead. I bought a few magazines to read, managed a bit of knitting, started searching and reading more about the illness online everyday and this was combined with a little yoga on a daily basis, with meditations and audio books.
If recovery is not monitored with careful pacing or little obstacles appear that are unavoidable like a virus or family situation, crash will happen during recovery. It will be less of a disastrous crash; more of a hiccup, but similar responses are required. Complete bed rest being one and just slipping back to a quieter routine, being another. I know one of the best things for me in these times is to avoid leaving the house, cut myself off from visitors and give myself some space. A couple of phone calls every week and an afternoon sleep every day, keeping my diet healthy and accessible, with a favourite DVD set or book to read is what usually helps me. After a couple of weeks of floating through I feel better able to pick myself up and keep going. Crash (or even just a little dip) requires acceptance and action.

Saturday, 2 June 2012

Why Write A Blog?

All doctors keep notes to document progress. Many patients keep diaries to aid visits with specialists: How often do I...? How much... did I? These questions and answers are important to note current situation and observe, from a wider perspective, how, if and where changes can be made.
I have been writing informally for years. Also making detailed notes about particular symptoms when necessary to give clearer vision. For a patient with any condition, making notes is an ideal way to chart progress. I think this is one of the reasons I am writing a blog. It gives me clarity, helps me view the situation almost from an outsider's position. I can think how I would give advice to someone else in this position and having the inside knowledge gives me an easier task when giving that advice.
As and when something occurs to me I sit and write, or make a quick note of the subject and come back to it later. It might be that I have had an amazing moment that I just have to record- like filling the washing machine, or talking to someone! without my mind wandering, for more than an hour. This is a fabulous thing to note; as time passes these things are forgotten- especially when insufficient memory is a big issue! To look back on notes and think- 'wow, why was that such a noteworthy event?' is very empowering. Writing it down will show that getting dressed without help is so amazing now, so that in 6-12 months time when I am walking for 20 minutes without becoming breathless the previous experience may appear insignificant, but I will be reminded how far I have come.
A noteworthy occurrence might also be not such a good thing; many is the time when I have sat down, frustrated and just needed to clear my head. It is the frustrations of ME that make the note taking just as worthwhile. Frustrations with friends or doctors who don't understand or just won't try to do anything to help. Also personal frustrations, finding it so difficult to eat with a knife and fork, or not leaving the house for months on end. At these points, just making lists of what I could do was important too.
There has been many a time when I have had to sit down and prove to myself that I am ill too; which might seem very depressing and negative, but for an ME patient going through a good few months, the dips and frustrations can be forgotten and the possibility of a crash from 'overdoing' it can be denied. This is so important, as a pragmatic and realistic patient is the one who finds the right path. By occasionally writing down what I can't do I have really helped myself to realise that I need help, that I need to find recovery- it is not going to find me.
So this blog is ideal therapy for myself!
But most importantly it is to show how this illness really affects the person and it is meant to give hope to those who have the illness and help them believe that recovery is a possibility.

Friday, 1 June 2012


I should be proud of myself that I am holding back, that I am deciding to choose discipline over the desire to tidy, clear, beautify the garden. Holding back is so difficult. I'm also deciding to sit down instead of standing, to sleep instead of visit a friend. But it is so difficult.
I'm taking a splint off my leg and bringing it back to life with physiotherapy and gentle exercise. I am regenerating my whole body- not like Doctor Who; in a few minutes- probably over a few years.
Discipline is happening in every part of my life and I have to be so careful. Also, thanks to the new pacing information I have been reading, I know I have to push the limits occasionally. The patients who heal faster and more securely are the patients who have a few set-backs along the way. Set-backs every 4-6 weeks rather than every week, so gently testing the ground as progress continues. Muscles grow stronger by being pushed, broken and then healing just as a young tree trunk will be stronger if it is unsupported, so allowed to sway in the wind. Important aswell is resting; not necessarily sleeping but sitting or lying and doing nothing, which will aidthe healing on a daily basis. Matching that with doing a little more activity regularly is confusing!
I do not like these healing times, so much more rest is needed as I test the water. Just a little more activity last week, with the hot weather, sent me to bed. It gave me the realisation that I need to be careful for another few weeks and let myself heal, before stretching that little bit more again.