Thursday, 31 May 2012


One particular piece of knowledge has really helped me understand the illness and start recovery: How to identify different types of tiredness. It goes beyond ME and I will be pleased to be able to identify these as I recover too, but as a patient of ME it has been incredibly helpful.
The theory is, I have been working with this for the last 6 months so I will state that it is actually true, that there are four types of tiredness.
Firstly absolutely drained- Physical Tiredness. For this the legs are like jelly, the neck is struggling to hold up the head and basically the best solution is bed rest. Possibly a sleep, but most definitely removing the burden of supporting the body in any physical activity.
Secondly comes mental, or - Cognitive Tiredness. Also called 'tired and wired' This can come about as simply reading for a long time or concentrating on a confusing conversation, but can also come about as a lot of stress building up, through work, school, family etc. etc. It is a good thing to be able to recognise this. Again a sleep might help but by staying awake, if possible some gardening, yoga or a quiet walk away from any study, books, people or the internet(!), this tiredness can be combatted with a cognitive rest through physical activity. This gives the opportunity for sleepy physical tiredness to hit at the right time; in the evening nearer bedtime. Obviously dealing with the stress which caused it in the first place is a good option too!
Thirdly comes Emotional Tiredness. Suddenly wanting to cry from sheer exhaustion for no apparent reason. This has happened to me over the years when I have had to sit down and burst into tears after a busy day or when we have been out and I have seen too many people in too short a time. It is exhausting, the body can't cope. It doesn't go into stress mode it just collapses and says "I have had enough!"
Environmental Tiredness is the last one. I knew I had been reacting to feeling tired in different ways during the years and sometimes it worked, sometimes it didn't.(I know my parents had always said to our complaints of "I'm tired" or "I'm bored" quite simply "try and find something different to do") and it is this principle that works here. By being environmentally tired the solution is to try a different activity. You may have been slouching on the sofa for a couple of hours watching a film, suddenly the credits finish rolling, you stretch, yawn and go into the kitchen to empty the dishwasher. It works and within 5 minutes you're not that tired any more and want to go to the local gastro pub for dinner!
Now I think about why I am tired before I react to it. Yes, sometimes I just need a sleep, but other times I will try a different activity before putting my head on the pillow. With the heat still pouring down on us yesterday I was lethargic in the morning. This knowledge really helped me really think about the day. By getting out of bed yesterday lunchtime, after a morning sleep and chat on the 'phone, I came into the kitchen, decided on a muffin recipe (link) so moving around in one of my favourite places in the house, calm and comfortable, without a great deal of cognitive effort. I used a bit of energy and gave myself a couple of ticks towards sleepiness for last night.
The different stages of the illness dictate how much you can influence this sometimes- after a crash stage, pretty much all that is possible is sleep and non- activity rest, but as the progress starts and moves on, more and more control can be taken back. It is a great tool to have and I thank the researchers and study groups for giving it to me. (link)

Wednesday, 30 May 2012

Banana Wednesdays

They are in the oven. Banana and chocolate chip, oat-flake muffins. Well I needed an easy recipe as I was determined to achieve my Wednesday goal of Muffin Making. The difficulties today are
a. I am still tired thanks partly to the weather,
b. I am hobbling thanks to my hips stiffening this morning for no particular reason that I can remember,
c. Ingredients in the house are not very compatible.- half a packet of chocolate chips, only 2 small over-ripe bananas which I knew had to factor in somewhere but couldn't be held to blame if they didn't give a great deal of flavour, not a lot of flour and I can't cook with nuts as OH can't take them to work (he works in a food manufacturing lab; testing and tasting flavours: NO Nuts or Sesame allowed)

Thanks to getting the ground work done, ingredients on table, scales at the ready, mixer clean and on standby and oven heated with muffin tray organised, I completed in quick time. Less than 15 minutes for the whole job. Banana not particularly well mashed as my arm is also aching and I mightn't get full marks for the mixing of liquids; but a lumpy result in muffins is recommended by some I am sure(?!)
I'm pleased I have done this, an achievement for the day. Some days drag with so little activity- especially with this hotter weather. Sitting with a nice view or audio book has to be done without the mind wandering or frustration and worries taking over, and that can be difficult. 20 minutes of something which will last for the rest of the week is great. Obviously 6 months of recovery will last for the rest of my life, but it is a tough job to remember that sometimes!

Tuesday, 29 May 2012

When Will I Be Walking Again?

A friend asked me this question recently and I was kind of flummoxed as I don't see it as a priority. The one thing that might push that part of my recovery is that it is my husband who pushes the wheelchair when we go shopping, or even for a short 'walk'(!). I would like to stop using the wheelchair and have more control when I leave the house, but as I say it is not a priority.
I am using my legs around the house, but if I use a pedometer to count my steps during the day, I am still only doing 800-1400 over 24 hours. This needs to increase and I need to lengthen my standing times between rests, before I can walk for anything more than a couple of minutes outside.
My physical energy is used in so many ways. If I was to still ask someone else to continue the cooking, someone to carry me into the garden if I wanted to sit in the shade on a sunny day, maybe also fetch and carry items around the house at my beck and call, then I might be walking 500 yards every day. I use energy in so many ways; when eating, getting dressed, making scrambled egg or a frozen, pre-chopped vegetable based curry! Also when filling my day with time passing activities; knitting, playing patience, doing jigsaws, reading, writing. The one thing I must mention is that energy is needed in this time to heal the body too. De-conditioned muscle needs time and energy to heal, more than a daily night's sleep will give.
Also my legs need practice walking. I am stretching my hamstrings in yoga, in putting a couple of plates in the dishwasher. My hip joints stiffen at the slightest weight bearing and more than a couple of minutes standing still. My yoga exercises are important, by sitting cross-legged, bearing my own body weight and stretching the spine.
Moving around the house will increase as the days, weeks and months go by. When this is nearer normal, or acceptable levels I will start to move about outside. I have had too many experiences over the years of walking around outside only to come home and collapse in an exhausted heap. During these times I have relied so much on others for day-to-day living needs. I am searching for a life where I can function inside and out of the house. Showing others that I can use my legs is not a priority; my priority is feeding myself, washing myself, dressing myself, enjoying hobbies and daily life. Once I have achieved that, I will encourage the outside world to enter into my life again and I will start to explore the one hobby I do still crave; going for quiet, peaceful, adventure-filled walks. (Oxymoron intended!)

Monday, 28 May 2012

Hot Weather

No thanks!
I find it so difficult to get through a hot or cold day. This last week with blue skies, humid weather and temperatures reaching 27 Celsius has been difficult. It has been part of the reason for me having regular naps over the weekend and feeling particularly drained of all energy. My OH and I have not left the house, other than to visit neighbours. I have also spent more time in bed as the rest of the house heats up quite quickly during the day and I don't have the energy to sit upright in the kitchen or living room.
"It is not that hot", some of you may be saying! For so many years the sun has caught me unawares, I have thought I'll be alright and then I have had a hibernation in order to cope with it. Trying to compensate activity with weather extremes is difficult- how much energy does a warm day take from me; enough so I shouldn't fill the washing machine, or so that I shouldn't have any friends round and mustn't do any reading?! With this weekend hibernation has come a dreadful lethargy so The Chelsea Flower Show has been my friend on television- I have been enjoying everyone else's gardens!
Last week before the heat really set in I did manage to spend some time in the garden though. By sitting on my lounger with a large garden parasol for shade and a cool breeze actually making me more comfortable than I would have been in the house, I enjoyed the warmer weather. But indoors was uncomfortable as was any part of the garden without shade or breeze! Sitting in the car to leave the house was excruciating, so it was not attempted! We were hoping to go to a garden centre yesterday and pick out a new lawn mower- looks like that might be another internet job!
Why does the heat make me so lethargic? I wish I knew! I sit with the window open, but only when it's shaded. I also use an electric fan at home, but there is not much I can do other than take a bottle of water when I leave the house in the warmer weather. I wear layers, have a fan in my bag, avoid the direct sunlight and look forward to an 18-21 Celsius weather forecast.
I suppose I might appear to have that habit of being British; moaning about the weather, but I love it too. The garden flourishes, birds sing all day long outside my window, we're not constantly dodging the showers if we leave the house and there is less washing to do with t-shirts and linen trousers rather than jumpers, shirts, jeans and long johns!

Sunday, 27 May 2012

One Pace At A Time

Oh how so many ME patients will be saying "pacing, I love it, I hate it"!
To an ME patient, pacing is varied and confusing. It can be taken back to the simplest terms of walking at different speeds. I have had ME for 24 years and still struggle with it as the pace at which I walk changes from day to day and only during a time of restrained stability is it nearer constant. Pacing is described and proven by ME charities as the one way that patients can improve their health and, as the name suggests, it is all about taking one step at a time; winning the race as the tortoise rather than the hare.
The finer principles are very personal and requires listening to the body as much as following a scientific model. As I mentioned before, finding stability is the first step; by realising your limits the progress options show themselves more clearly. I found stability by writing out tick charts, of the simplest things I do everyday: watching an hour's TV, doing 30 minutes knitting, 15 minutes yoga, 10 minutes on my feet, 20 minutes reading emails. I discovered how little I was actually doing and therefore did not push myself. If I wanted to leave the house it meant at least three ticks: dressing, leaving house and either car or wheelchair journey (and as I was only achieving eleven or twelve ticks every day this would be a big thing) This would usually suggest also being in the company of another person, (which can be very draining) and sitting on a chair without a head support- two more ticks! It might seem very severe but for those days it was important. By pacing myself I did not enter the realms of twenty ticks in one day leading to a week of eight ticks every day. This is known as crashing or dipping, symptoms increase, exhaustion sets in and is not a nice experience!
I have been using my Tick Charts for years. I came across another form of this last year and it is a very good example of how to explain an illness such as ME to a friend. It uses spoons instead of ticks (The Spoon Theory- hunt this down on a search engine or on, as it is a copyrighted piece, links are not allowed)
As progress continues and I use more and more ticks and spoons I am searching out more theories and information about pacing. (I'm currently using about 25-30 ticks each day!) This is where my knowledge has not been complete in the past and now that I have more clarity in other parts of my recovery I know how important pacing will be- the muscle damage and cellular deterioration will rely on my giving rest time and healing pacing, significant thought. The general principles are obviously very similar, but as many tips as I can find will be helpful. I have been searching out websites and documents this week and have amassed a large body of pacing information to research. Even though it might seem extreme I feel that the more input I have, the more I can weed out the unnecessary repeats and find a few new ideas which can do nothing other than help me as I go. Wish me luck!

Saturday, 26 May 2012


My Dad taught me to play patience. His parents taught me too. It is a great pass-time for those days when I need a time-passer. It has also taught me a great thing. And I am sure you can guess what that might be!
I was playing yesterday evening. Sitting in bed with my tray and patience cards. I remembered a game I had not played for a while and decided to give it a go. It was an easier one to complete than one I had been playing the last few weeks- or so I thought. Over about 45 minutes I laid the cards out, dealt and moved them around. Each of 5 or 6 times, the game would not complete. What was going wrong? This is not unusual, a few weeks ago I laid out a similar game over and over again for an hour, without success. It wasn't until I attempted the same game a few days later that it completed three times in a row!
As I packed the cards away yesterday I noticed three cards sat next to me on the bed! They had obviously escaped the set I had been dealing with and may have been the reason this game was refusing to complete. After an instant sinking feeling, I laughed out loud and knew it had to be something I told my Dad next time I saw him- he would be laughing out loud too-LOL.
The reason I mention this phenomenon is that the card games I have been playing over the years have taught me a very good lesson. When I play alone or with others I smile all the way through. Nothing is determined in life. You are dealt your cards and you smile whether the game works out your way or not. By enjoying the process I have a much better desire to accept my situation. Knowing that it may take a few attempts to reach certain goals, gives me a strength and an acceptance if there is a necessity to deal out those cards again a few times along the way. This has happened numerous times in my illness and we have discovered sometimes that some of those cards are missing. In those times I have picked up these patience cards and started again. I smile when I am winning- who wouldn't?- and after an initial sinking feeling, I smile when I am not. Be that a smile through a full hibernation or just sitting on a choppy wave.

Friday, 25 May 2012

The Simplest Things...

...Can lead to a few bad days. Or as I prefer to call them hibernation, or not-so-good days.
Hibernation can come about for just a few hours, a couple of days or a few weeks or months. It can be a result of many things. Firstly by overdoing it. Overdoing it, I have mentioned before. It can be seen as a failure, a desire for more when more is just not possible. By fulfilling that desire, hibernation is the result. It can be agreeing to lunch with a friend when you know that bed should really be a more sensible option for the rest of the day, or not cancelling an arrangement because it has been a guiding light for weeks in advance. Sometimes it is actually worth fulfilling that desire or arrangement and as an ME patient that is the personal decision that has to be made. It can bring happy memories- glimpses- for weeks to come, or it can bring about guilt, shame, disappointment and regret. It is learning to accept the result which can shorten the required rest time. This type of hibernation can also be brought about by impulsiveness. I can be impulsive. I expect many people can be. To please a friend or make life easier for myself I will choose impulsiveness over sensibility. It works most times; other times I have to pick myself up, dust myself down (hibernate for a short while!) and start all over again!
Another simple thing can be an unexpected burden. Cognitive activity should not be underestimated in this illness. An unforeseen financial or family situation can use up a lot of energy and bring about hibernation. The main reason for this is the increased insomnia that is brought about (for many sufferers insomnia is a daily symptom). We all have nights when tossing and turning is brought on by thoughts and burdens. For an ME patient this coming on top of non-restorative daytime rest just creates further symptoms such as headaches, migraines, increased pain elsewhere in the body and cognitive confusion beyond belief.
One more simple thing to mention is infections and viruses. The immune system is working overtime in an ME sufferer so an infection of the slightest degree will be fought as soon as looked at and all the energy the body has will go towards this fight. In some cases it is in dysfunction to the other extreme so that colds and flus bring on worse regular symptoms- runny nose, temperature, coughs and indigestion. In both extremes another hibernation is induced. This is unpredictable, totally devastating and most definitely a reason for longer-term hibernation.
We have to accept these interruptions in our road to recovery and even in our darkest stability months and years. The simplest things can lengthen our illness, but they are very difficult to avoid.

Thursday, 24 May 2012

Monthly Achievements

So I have been jogging along, sitting on my wave of gentle ups and downs, good days, not so good days. Times of improvement, times of wishing something would happen. Along this wave I am seeing myself achieving little things. Things which appear trivial but are actually major leaps. Here is a list of what I am doing now, which I would not have attempted just two months ago:
Filling up a kettle and walking with it from the sink to the power point.
Making Muffins!
Tidying away bits and pieces without becoming breathless.
Get dressed standing up. (That is amazing- I used to sit on the bed and ask my husband to bring my clothes to me and he would actually put my shoes on for me)
Knitting for 45 minutes occasionally, without aching or feeling breathless.
Walking from our front door to the car, confidently and with purpose.
Sitting at the kitchen table, typing (yes, I started doing that this week!)
On the subject of sitting at a table, I can actually sit without a support for my head for a couple of hours some days.
I picked up a watering can, 5 litres of water, without thinking twice, and watered a pot plant.
Eating a meal with a knife and fork, somedays I regress to finger food, but I am progressing past that toddler stage more and more often, again without thinking.
Standing poses in my yoga. This is a great achievement and gives me hope that I will be doing more walking soon.
I am actually sitting sometimes thinking 'what shall I do now?'. because of this I wrote out a list of activities for myself to use in these situations. Sitting without an activity usually gives me the same old 'phew' response, but actually thinking 'I want to do something' is great.
I can fill up the washing machine- I did it yesterday and did a celebration dance with my husband. He thought I was totally mad, but it was amazing- especially as I had also just removed the duvet cover and sheet from the bed. (so what that I needed a sleep afterwards!!)

Little things are happening; glimpses are appearing. I mustn't reach too far and forget my long-term goal. If I am cautious and take a couple more months to reach my recovery I will not complain. As ever I am smiling all over my face!

Wednesday, 23 May 2012

Rooftop Knitting

Knitting is a big thing for me. My friends will know I am not a closet knitter, but a scream out loud from the rooftops knitter. It is one of the activities that gives me a gauge to measure my wellness. There might be months through the year when I don't pick up needles and yarn, there might be months through the year when I hold them every day. This is the gauge that tells me my health. Cognitive processes are involved. If I am well- so that my arms are quite fit- I might zoom across three or four rows without thinking twice. This is all very well but I might therefore have forgotten a patterned row, or a change of colour have to sit with great concentration and unpick my efforts-this is when my cognitive and physical wellness don't quite match! An easier project will mean I can knit without thinking- so much of my knitting is ingrained; I am an auto-pilot knitter. I have even been known to totally astonish myself with knitting a lace or cable pattern on auto-pilot. The months when I don't knit are usually enforced. If I knit for a couple of short sessions each day, sometimes I can do nothing else helpful or useful. My husband becomes the carer and the bearer! If I am counting stitches and he interrupts me, he takes the brunt of it. This is when I put it down, zip up the bag and hide it.
December last year was the last time I really attempted anything for myself. I was in love with my pattern, a fairIsle cardigan. But my OH was bearing too much! It was hidden. About a month later a friend asked me to knit a cardigan. It was an easier knit, being in a single colour, but it took a long time; four months for one project is unusual for me. There were weeks when I couldn't pick up the needles, just through lack of strength in my arms, weeks when I would try and abandon the attempt after 10 minutes as my brain couldn't fathom what I was doing and weeks when I might manage 3 or 4 sessions of 20-30 minutes. Having achieved that and also finished a baby blanket for another friend, I know I have a bit more time and energy to give to such a project.
So I have reached out to my dearest wool shop, found a pattern that requires time and patience and that I will enjoy. It is for me, it will give me an achievable goal. Twenty or thirty minutes of knitting here and there is a challenge, a smile, a glimpse; to sit in bed or under a blanket on the sofa and knit is something that reminds me of home, something that reminds me of all the years when I have struggled, persevered and achieved. Knitting and sewing have kept me going over the years. Small projects with little goals are perfect to motivate me through the good days and the not-so-good days. I am looking forward to wearing my french navy, wool tweed, shawl collared, short, double breasted, nipped in at the waist, front cabled with moss stitch cardigan by next Autumn. I will achieve it, I will give it my time and patience.

Tuesday, 22 May 2012


Why a blog post about breathing?
I'm wondering too and am not sure where to start.
Breathing is something we do. An unconscious reaction. If it becomes a conscious reaction it can be of great benefit.
I did a lot of conscious breathing before I became ill. I played the flute and could hold very long single notes, create long phrases of perfection without taking a sneaky breath in the middle. Swimming was also a big thing for me. I used to love diving underwater and doing two strokes of butterfly, or three strokes of front crawl without breaths in between. I would feel my chest constricted by the volume of the water and watch the bubbles as I gently let the air out as slowly as possible.
Conscious breathing has reappeared in my life recently and is very important. Filling the whole of the diaphragm loosens the stomach, lengthens the breath and leaves a calmer, meditative state. It is a great way to almost control the stress response system. I am sure whenever I was in a bed-bound state these techniques were more important than I realised. I never called them meditation or Yogic breathing I would just lie, listening to calming music or an audio book, breathe slowly and clear my mind of thoughts. Even concentrating on a game of snooker or a cricket match would give me that time of stillness. For years I have followed the idea of breathing in 1,2,3 breathing out 1,2,3,4. Emptying the lungs that little bit more lets the whole body relax.
Now my routine involves yogic breathing (Alternate Nostril Breathing/ Alternate Nostril Exhaling), daily meditations too. Daily meditation began for me, just a couple of weeks before I began the yoga lessons. It was also mentioned in a lot of books and recovery stories as an essential for releasing the automatic stress responses. A lot of free meditation podcasts and guided audios are available online. I found them and choose a few. One of the best was a simple 10 minute guided 7-11 breathing meditation. Very simply, inhaling for a count of 7, pausing and exhaling for a count of 11, pausing and so on. The idea is to slow the count down as the breath relaxes the body and after ten minutes the breath is ready to guide you through a calm and peaceful day. I do this and other breathing techniques when I am just sitting reading a book or eating my dinner, sitting in the car passenger seat listening to the radio. It gives a focus other than the illness and leaves me better able to deal with any frustrations that may come along.

Monday, 21 May 2012


Yoga has been a very important part of my recovery. For the last 5 months I have been practising Yoga consistently. I thought it was beyond me, firstly because I can't and never have been able to do head stands, and secondly because I knew I could never get to a class or last the full hour most of these classes offer.
Yoga was mentioned in a few recovery stories I read six months ago and that made me sure that it had to be part of my life. I found a few nearby teachers and asked if they would come to me for weekly, short, lessons. One agreed and it worked. The first lesson was exhausting; we did about 20 minutes of sitting, kneeling and lying poses and finished in the lying relaxation pose. I was in tears before we finished as it was so overwhelming and shattering. I'm not sure I would have continued if I hadn't given her enough money for two weeks, so was committed to the next lesson. By needing a three day long recovery from just twenty minutes I was limited to practising twice a week, once with the teacher. I began to research the poses we had been doing, mostly online. A couple of magazines helped with that too and also told me that I wasn't just a beginner, I was and unfit, un-supple, almost totally incapable beginner! So I continued like this for about 5 weeks, 15 minute sessions once or twice a week with dramatic exhaustion but a much better understanding of the focus and discipline that yoga required. To entrench that discipline I changed my plan. One book I read about a recovered ME patient had described a very simple yoga structure. 5 minutes daily with a slow build up as the months went by. This was my new plan. Every morning I entered the day with yoga. To begin with I was following my breath and moving my neck, getting on all fours and stretching my spine, then lying on my back, twisting my legs back and forth, before lying in the relaxation 'corpse' pose for 5 minutes. So each morning pretty much 5 minutes of poses followed by 5 minutes of relaxation was all I could manage, but it was bearable and didn't have such dramatic consequences. As the weeks went by I increased the time to 6, 7 and then 9 minutes. Then 12 minutes and now I do about 15-20 minutes depending on how I feel and some days I just do the original 5 minute routine, or just stretch my neck.
The amazing thing is that this life-style has reached into my day. I think about my breath as I am sitting here typing, I bend over to the fridge and feel my lower back gently elongating as my exhale matches my movement. When I began yoga in January I knew I wasn't going to do it half-heartedly and although I was kind of disappointed at how inflexible I was, I am pleased I have done the right thing; stuck with it and found something to increase my activity levels at my pace and as I choose.
A quick note should be added- I completed my first standing poses last week -forward bend and warrior. When attempted before they have given me a lot of hip and lower back pain-not to mention dizziness! I've done it now and will continue to practise them. I know they will help with my determination to regularly walk again outside. One step at a time!

Sunday, 20 May 2012


I am smiling all over my face. Yesterday I found a new place. (hey-they rhyme!)
That new place is belief. Trust that I AM doing the right thing. This specialist is helping me down the right path. His ideas aren't just looney tunes.
For weeks I have been doubting, wondering if it all is a waste of money, a scam to take me only so far- just like I've taken myself in the past. 'why do I need his help, he is no different to any other ME Specialist' I have been thinking.
The difference yesterday was that I found more and more websites, more and more patient recovery stories that have used this path and very similar ones too. I also see my symptoms and reactions to these symptoms, being different.
The basic principle is that this first massive trauma, which for me was the serious virus, has an affect on the body almost like a physical PTSD. I don't have visions of when I was initially ill with that virus, neither do I particularly worry about being ill now. The unconscious brain is battling inside of me. It has PTSD. My flight and fight systems have been on red alert, DefCon 1, for the last 24 years and I had no idea. I knew that when I was quiet, when I had no responsibilities I felt better able to cope with everyday life. Surely everyone feels that? But inside me by immune system, adrenal glands, central nervous system, everything connected to automatic stress responses was over-reacting to everything. It sounds totally looney. How can anyone be in this state and not know it? Because we don't know it. It is inside. It is totally physiological. Telling any sufferer that "it is all in your head" is the worst thing you can do for an ME patient-it just makes us feel even more hopeless-do you really think we've not tried that path? So the issue now is that this is in my automatic nervous system and the unconscious brain's decisions to set it off; my brain has been telling me to keep fighting, keep fleeing, but having no idea about it doing this is the illness, is the problem. This has caused physiological damage to so many parts of my body, all the way down to the core. All the symptoms can be attributed to other issues.
Light headedness, poor body temperature regulation= low blood pressure: Diagnosed, live with it.
Aching muscles, delayed muscle exhaustion= mitochondrial dysfunction:
Diagnosed, live with it.
The list goes on and on. If the local GP, even NHS ME specialists and complementary therapists say, "Oh well, yes, you've got all these symptoms: diagnosed, live with it" you're not going to get very far on the ladder of ME Recovery.
So I am seeing improvement, by following this principle and the tools which can help retrain the nervous system, for the last two months I am becoming a different person. As ever it is slow, I need patience and as I have been ill for so many years it might take a few years still to see a significant recovery, but I know I can get better, I know I am climbing the ladder. I would smile all over my face before I started this programme and I have another new reason to do this now!

When making a start is just not possible

I have been there and I know what it is like. Rest is the best friend at times like these. If I needed a week in bed, with the shutters drawn and the hot water bottles on stand by, that is what I did; I spent the week in bed, with the shutters drawn and the hot water bottles on standby. My husband would prepare everything for me in the morning; even have the eggs ready-mixed to go in the microwave for my breakfast; the bread ready sliced for the toaster; a flask full of water for tea or coffee; my lunch on a covered plate, again ready for the microwave; hot water bottles done in the last minutes before he left the house in the morning and on call for a chat if I needed a friendly word of encouragement. I would be sleeping some of the day, watching TV to stop me sleeping the rest of the day and nothing much would be achieved other than making it through to him coming home, re-filling my bottles and preparing my evening meal. He would help me laugh, give me a shoulder if I needed to cry, get it all out of my system for me to tackle another day and another week in a better state or very much the same.
Giving yourself the rest is the best way to prepare for recovery. It can't happen just like that- don't let anyone tell you it can! Finding a calm state and forgetting what is going on in your body is the best way to float on through. Over the years I have had audio books, favourite films- again to make me laugh and cry. Laughter is so important, it lifts the spirits, as does a smile. Relaxing CDs are really helpful too, especially if there is pain. Calming music and sounds can relax the body and help you forget. As I mentioned in Beginning Recovery the resting environment can be so important too. My Mum used to pick fresh flowers every week, I also had artificial flowers in my room. Clean linen on the bed and a regular change of pyjamas. I buy myself fresh bedwear (well for us they are not always nightwear are they!) at least once every six months,or choose them as a Christmas or birthday present. It helps me realise that I am allowed to rest in bed, I am allowed to be comfortable and I am allowed to pamper myself even though only a few distinguished guests will see the result.
Time seemed to be my enemy, but it was not. It gave me rest, stability and it helped me find the right place to search for a solution. By calming my symptoms, time gave me hope and reason to believe and trust in recovery.

Saturday, 19 May 2012

Amazing Results

Everyday brings an OMG moment. That is one wonderful thing about recovering from any illness. Going downhill is full of "oh, no, I can't believe I can't..." but recovery brings smiles to the face and an amazing achievement at least once every day.
My achievement today was doing a yoga standing pose -the warrior- without almost falling over, or regretting it later. Yesterday I opened a new bottle of water, without help from a rubber bottle opener or a stronger male hand!
Last week I walked from the car to a coffee shop. On a Sunday, late in the afternoon, so no people traffic or vehicle traffic, it was also flat ground and the weather was clement. I did it and had no desperate results. That is all that is needed every day to help me smile and remember a good thing. I can focus on that when I need inspiration. I also try to remember to write them down. I made a fish pie a couple of weeks ago. Using all the tools I mentioned in Finding Food, I did it by myself in the middle of the week (my husband just made the mashed potato before he went to work). So many menus can be created in stages and discovering that I can be the creator is very definitely amazing.
I remember from a few weeks ago, when the sun was warming up the garden, I sat on the gravel and picked up all the bits that had been dug up from our bark area, by the blackbirds. Why do I remember it? Because it was an achievement. To sit uncomfortably, in gravel and sort out pieces of gravel and bark for 10 minutes was an achievement. Gardening is one of my loves, it has been for many years and to see a glimpse of what will be in my future is inspiring and encouraging. By remembering this kind of glimpse I am giving myself encouragement every day and becoming my own life coach. Before I used to see what I couldn't do, or just beat myself up when I'd tried and yet again overdone it and there are days like these still, when my symptoms become overwhelming. Every ME patient is the same. With so many symptoms, confusion, pain and exhaustion, battling from all sides, it is difficult to see anything else. Frustration and acceptance become the two options. Frustration can be combatted by understanding the illness. Acceptance comes when the stability is found, glimpses are seen, belief in recovery is suggested and when symptoms start to lessen. From there recovery is possible.

Friday, 18 May 2012

We all have bad days!

Here is a piece I wrote a couple of weeks ago, before I started the blog. As it is quite similar to the earlier post from today I thought I would just show how often frustration appears in the life of an ME patient. But we are not alone, we all feel the same and we can get through...

Oh, where am I? I'm really not sure. Maybe I'm procrastinating thanks to the weather. Maybe I am constantly getting used to having a bit more energy, then a bit more energy, then a bit more energy. So each day is confusing and I am readjusting my barometer of health.
Yes I'm not sure where I am. I am ill. I have ME. I have a neurological illness. I have seizures, I have sleepless nights, I have 'wakeless' days. The daft thing is that almost everyone who champions for those with ME, seems to believe that if you recover from ME that you can't have had ME in the first place. Where does that come from? Is it not a good thing to have recovery? Is it so bad to find a light on the horizon and search for it, believing it can be reached? Those who recover from cancer are seen to be heroes who battled through and fought the good fight, not some fraud who imagined their tumour or weakened immune system. Somedays I am so motivated, I find a calm quiet place to have an active peaceful day. Other days I find a sleepless night leads me into a hyper, crazy day where nothing is achieved and another day seems wasted on the road to recovery.
We are all desperate to find a relief, we almost beg to be better. Those of us who are ill with ME describe our lives as a constant search for the answer, like the mice who created the earth, only to have it destroyed two minutes before the answer was uttered from a small girl's lips.(Douglas Adam's Hitch Hiker's Guide) When I find an answer it is torn from my fingertips. "you can never recover, if you do, you can't have been ill in the first place-it was all in your head!"
I must give this new way of life 6 months. I must follow the plan and choose a different way of living. I have been following this new path, this new hypothesis and recovery programme for 7 weeks, I am just the good old sceptical me who says, "oh, you've recovered before, but you'll only get so far." I must fight her, remove her from my friends on FaceBook and follow the friend who says "give it a try, what's another 6 months in 24 years?" I know she is right. Even if it only gives me a path to follow, how far I manage along that path has yet to be determined and giving up now means that I will never reach that light on the horizon; I must give myself the chance to reach that light and keep walking with my head held high.

Chocolate Wednesdays

I have talked about my restricted diet. Because of my Candidiasis my everyday food has been restricted for almost twenty years. No sugar, including most fruits, no refined carbohydrates, no cheese or any other form of yeast. Thanks to these restrictions my digestion is finally showing signs of returning to pre-candida acceptance. So much so that I have... eaten a chocolate muffin!
One each day for the last three days. Wow. I remember those days so well. The recipe for my Wednesday bake had to be easy to create-as mentioned in Making Muffins! I also needed a recipe without milk and baking fat as we were seriously diminished in the fridge department. Thankfully my wonderful Muffins book, a present from my sister last year, proved very helpful. Replacing milk with an instant coffee/150ml water mix was the answer and I also searched for an option with oil instead of baking fat. So in went the flour, baking powder and bicarbonate of soda. The mixer was ready. I then had a sit down, while the coffee cooled down and prepared the muffin cases. Next was yoghurt, sugar, egg, oil, cocoa powder and the coffee. It looked wonderful all stirred together in the Pyrex jug. Like a rich, thick, gooey sauce ready to pour over ice cream or a sticky sponge pudding.
So I slowly poured it into the mixer and let it mix.
I half filled each muffin case and then added an extra touch-a piece of plain chocolate in the centre of each, before dividing out the rest of the indulgent concoction!
Into the oven and 20 minutes to relax. Wednesday was a good day; sunny, although not really warm enough to sit outside for longer than ten minutes. I managed to rinse and tidy up most of the bowls and spoons I had used for the baking as well as putting all the ingredients away. I had an afternoon in bed with the BBC adaptation of Cranford for company, and also achieved a bit of knitting.
I am getting used to being physically tired. Wednesday was one of those days. It felt great to get to bedtime being exhausted on the outside. My tiredness is sometimes all on the inside, I feel the whole of my body being dragged to the floor. My mind becomes clouded, with very little retention of anything much that is taken in. Today is one of those days. On a tired day I try to lift myself above it- instead of struggling with words, I'm searching through a thesaurus as I'm writing! My head needs support from an arm on a table, my eyes are battling the lids. I'm caught in a loop, every minute thinking 'I'll be better in a minute'! Of course this rarely works, as I am actually exhausted! So I decide to float. I observe the anarchy of my body, the pleasures I can still enjoy in this situation. I eat a fruit yoghurt, watch a favourite film, choose a different chair and bob about in middle of the ocean knowing that shore will find me again.

Thursday, 17 May 2012


This has been one of my best tools to aid any sort of recovery. For years the rule on the street has been: If you have ME, you have an untreatable, incurable illness. This goes for the many other similar conditions such as Fibromyalgia, MCS and of course the other diagnosis given for ME sufferers CFS. If you find the right sources and read the right pages you will discover that over the last few years this rule has been changed. ME is totally treatable, totally curable and need not be a lifelong ailment that just has to be accepted and coped with.
I have just floated along with my condition for years, accepting what I was and dealing with niggles as they came along. When I hit the wall again 2 years ago I decided to rediscover the situation on the streets. From previous reading through the 1990's mostly and especially by contacting ME charities and online self-help websites I had discovered that any hope of recovery would see you spending a lot of money for very little chance of a worthwhile result.
The new search began. When I was well enough I spent an hour or so going through search engines and book reviews.The words that you use in search engines can be so important in finding the catalyst. Epilepsy Research had helped me a lot to rediscover my options and find me some kind of hope for controlling my seizures, This was my catalyst. I typed in ME Research. And discovered a lot. I found papers, University research projects, different trials and testing techniques. This was a good start. I watched lectures on YouTube, I read papers and charity magazines and learnt so much about why my body reacts like it does in different situations. Just knowing that each cell in the body has energy-making atoms and that in ME patients these atoms don't have the relevant parts to recreate the energy as quickly as in a healthy person, made me realise how important combating the overexertion and endless days of recuperation would be in finding my own recovery. Also how important my diet would be to recreate those atoms faster. Mitochondrial Dysfunction is my friend, but I am telling it to find a new playmate! I also began to understand why sitting up and standing created a falling sensation, what the autonomic nervous system was for and why it also was in a state of dysfunction.
I began searching on book websites for ME recovery stories and positive books about how to cope with the condition. Some were still very down beat and just wanted to tell me to live with it and get used to it. Others were saying "you can get better, here's how to best recreate that" Reading the reviews of these books have been my best ally in finding freedom. Dropping hints and website titles into the reviews has been and will continue to be the best way of finding recommendations for everything ME related as far as my recovery has gone. Research the ideas and "cures" before you decide to go ahead with them, but being free of this illness and finding freedom is totally possible. Don't believe in websites and books that wallow in self-pity, that say every cure is someone making money for old rope. Believing in recovery is the first step, some days are easier than other to trust that belief, but the knowledge, medical research and proof is there to show that recovery is possible. Read as much as you can, aid you own recovery, be your own doctor and create your own destiny.

Wednesday, 16 May 2012

Finding Food

How often do you go into the freezer and find a box or bag, without a label and no identifying features? I did that yesterday evening. I was rooting out a frozen yoghurt for my supper and there it was. A box with a pink lid, no label and a reddy, brown tinged bulk inside. It could be a chicken curry, casserole, meatball spaghetti, tomato sauce, large helping of soup. I had no idea. So it was repositioned and pushed to the back of my mind; I was more interested in my frozen yoghurt!
We seem to eat out of the freezer. As an ME sufferer it becomes the best option. Being unable to cook main meals everyday the freezer and fridge have become my best buddies. When I became housebound again 2 years ago my energy resources disappeared so drastically that the option we first came up with for my lunchtime meal, was ready meals. Not the real thing though. We bought large and individual pies and quiches from the supermarket. These were cooked, divided up and split into meals with potatoes and vegetables and then frozen. All I had to do every day for my lunch was retrieve a pre-prepared meal and trust the microwave to do its thing. If I was more patient I would put it all in the oven and have a fuller flavour at the end of it.
This worked for a while. The quality of the food was reasonable. Buying sausage rolls and pasties, also breaded fish and fishcakes, for the same purpose, gave it variety, but still didn't give me fresh food with a full nutrient base to aid my recovery. Next link up the chain became finding supermarket food which provided the similar ease of cooking, but a better list of ingredients. I have always read the packets of whatever I buy in the shops, but this was getting ridiculous! We found ready meals without preservatives and flavourings. Perfect, but very expensive. Though finding this all in a different supermarket meant that they had a different list of ingredients for their pies and quiches too and this shop offered ready to cook meat and fish, in oven friendly foil trays, with healthy sauces and marinades. A few choice selections became our monthly shop. As expected these ready meals too became tedious. Who really wants to eat Spag.Bol. three times a week interspersed with a couple of meals of breaded fish and pieces of pie?
By this time we had discovered what most supermarkets were beginning to offer in respect of budget vegetable shopping. Buying fresh organic vegetables is usually the most expensive option. Going down the budget scale, regular vegetables, cheap large quantities of vegetables and then further down the line is tinned and frozen vegetables. I have never eaten any tinned vegetables other than tins of chopped tomatoes- simply for the convenience. The frozen vegetables, it was discovered, have gone through a whole new phase. We began buying frozen everything; chopped onions, chopped mixed peppers, mixed veg, chunky mixed veg, even chopped frozen herbs and garlic. I am now amazed at how we ever survived without it all. From someone who would take pride in throwing together a casserole or fish pie with fresh ingredients and nothing more pre-prepared than a tin of tomatoes or frozen peas I am now someone who eats from the freezer and eats healthily from the freezer. Every weekend my husband and I combine our skills (and energy levels!) and cook two or three meals, each with four or five portions. Baked pasta is usually one of the results, also the ready to cook meats and at least once a month we have a fish pie, a supermarket pie and a curry. When there are weeks when I just don't have the energy to assist he usually digs into the freezer and finds a couple of two portion meals that we have stashed in the back and there is enough also stashed to feed us for the next week too. We make a good team. Giving the carer time and space is a necessity when so much of the day is taken up with fetching, doing, and aiding the patient. By cooking like this and making each meal as easy and skill free as possible we are floating through this difficult time and I look forward to the day when I can be a chef de cuisine again.

Tuesday, 15 May 2012

Making Muffins

I have always loved cooking. When I was a child it would be my weekend must, after school, during the holidays. My sister, brother and I had our own cook books and we would see the marvellous pictures of chocolate cakes and fairy-iced cupcakes. Biscuits, bread, brownies, pastry cheese sticks. Recently it has been a dream rather than a reality. I tried it a few times. The simple cake recipe my Mum used would be so easy. 4,4,2,4. What are you thinking?...'What?' or 'Yes!' 4oz sugar, 4oz baking marg, 2 eggs, 4oz flour. Sounds easy enough. What a shock I had when I tried to put the ingredients in a bowl and mix them together. My arms (and heart) had not had such a work out for months, years even; and I felt it for days afterwards. This was when I made the decision to use a food processor. It worked a few times, my husband didn't complain. They were kind of flat as the mixture had been battered to death and the self-raising part of the flour just decided to extinguish itself in the processor rather than the oven.
So what then? Muffins. Easier, two lots of ingredients-Wet and Dry. The Dry and Wet could even be prepared separately and combined another time. Three sessions in the kitchen instead of one. Getting better. But a lot of ingredients (in and out of cupboards, as I described in 'eggs and dishwashers', isn't quite my forte) and still a tough mix. So I have actually given it a rest for about 6 months. An occasional attempt, as I just couldn't resist, though I still wanted to achieve it without the pain and with a decent result. The solution has been a food mixer rather than a processor. It is my new best friend. To have a dough hook and a mixing hook and a whisk, with different speed settings is brilliant. Again, I can prepare the ingredients at different times with the muffins and mix them together, or rather instruct the mixer to mix them together! I hope to make them once a week- they are perfect for the lunch box my husband takes to work, and an ideal add-on for an evening meal as he always eats more than I do (well, he is 6'2"!).
This week's were quite exotic. We had a few single snack boxes, delivered as an offer through the post- you may have had them, Graze is the company. This week one of the boxes contained orange soaked sultanas, dried cranberries and dried apples. I snipped up the pieces of apple with a pair of scissors into the mixer and threw the sultanas and cranberries in too. As a hindsight option I would probably recommend adding ground cinnamon and nutmeg or a five spice mix, but not bad for a recovering ME cook!

Monday, 14 May 2012

Beginning Recovery

Making a start towards recovery is difficult. As I said before, deciding to sit on the bottom rung of the ladder, or even the floor and waiting for recovery to find you is possibly the best way to do it. I had to cut off a lot of ties, emailing and FaceBook became my social life. Knowing what is going on around you is very helpful and doesn't make you feel so cut off from the world. Deciding to not "Over do it" is also the first rung of the ladder. To find this place you have to learn to say "no"! and find quiet things to do when you can say "yes". My quiet "yes" time is having a friend over for a cup of tea for an hour or so. My husband also takes me out at the weekend to sit in a coffee shop for an afternoon. Six months ago he would leave me there and go and do some shopping. Now I am able to join him in the wheelchair and make some of the decisions. Soon I will be walking around some of the shops. It is all about taking small steps.
When I was spending a lot of time in bed, taking a step back meant removing cognitive pressure rather than physical pressure. Last year we cleared out the bedroom. I chose some patterned boxes and filled them with the items from the surfaces; DVDs, make-up, hand-held mirrors, necklaces, scarves- just little things that I used occasionally but, by my being in the bedroom more, were becoming clutter. By reducing the eye candy, I had a calmer viewpoint; less to distract my mind. I also decided carefully on things to put by my bed. Firstly to just ease the need to call for help so often I now have a bottle of water and a small glass there constantly so I can refill when I need to, rather than waiting for assistance. I have always had a box of tissues there, a pack of patience cards, hand cream, throat pastilles, a few books to flick through and the phone and my handbag are usually there too. One other thing that I started using last year is packets of wet tissues. For a while I was asking for a flannel or piece of damp kitchen towel, just to wipe my face or hands after eating. This can now be sorted without the hassle and on days when I am finding everything difficult I use them instead of washing in the bathroom. A lot of these things are no longer necessary every day for me, but a welcoming bedroom is still something that says to me "don't be ashamed if you need to come and have a quiet rest for a while, give yourself a break"

Sunday, 13 May 2012

Blogs, eggs and dishwashers

This week has been ME Awareness week and although 1200 words for International ME Awareness day, yesterday, did seem justified, I will try to leave you with more readable chunks! (especially as I realise some of you may be reading this from a very small hand-held device!)
You may be thinking "what is someone with ME doing, writing a blog anyway? Surely she is occupied being ill!" I know where you are coming from and until I had a tablet computer and was able to sit, propped up in bed, surfing the net for an hour or so occasionally I thought the same. Snuggled in bed with hot water bottles and a thick winter duvet it is totally possible and my arms get a work out from a bit of typing. As much as I would love to, I do not write each piece in one go. I am thinking about it first during the day, later I type for about twenty minutes, it is fiddled and redrafted another time and uploaded another.
By finding a focus like this, something to occupy my mind other than the symptoms or frustrations of having this illness, I feel better able to float on through the difficulties and find triumphs and achievements.
So to the eggs and dishwashers: I have been writing like this since January and here is one of those pieces...

I cooked my own scrambled egg today- standing in front of the hob and stirring as I went, good achievement. To stand for 8 minutes without feeling dizzy or nauseous is quite a revelation. 3 minutes used to be too much, so did 30 seconds, just standing 4 months ago would have me falling over. Moving around the kitchen is getting easier too, with things in different cupboards (obviously!) opening one, turning round, walking across the kitchen, opening another, turning round, walking across the kitchen, stirring an egg, switching on a toaster, becomes like a merry-go-round; a pirouette without a focus point. I had abandoned all hope of ever doing anything helpful in the kitchen ever again and sat down on the chair for 2 minutes in between toaster, cupboard, sink etc. This is no longer necessary so often. It's still not great as I actually get out of breath when moving around the kitchen and still become dizzy sometimes, but just not as often. I look forward to regularly emptying the dishwasher. This used to be my Dad's job. When I was a child I would wake up most days and hear him downstairs emptying the dishwasher as his early morning chore. But to him it wasn't a chore, more a pleasure; a routine of regular movement; a symphony of clattering plates and cutlery. I want to be conducting that symphony every morning and start my day with a clatter!

Saturday, 12 May 2012

Where have I been?

My illness began in 1987. I was twelve years old and the school term had started in the September. On a scary Monday morning I woke up, I wasn't the same person. Mum came in to my room as I wasn't preparing myself for school; so unusual, I was keen and lively on a Monday morning. By eight o'clock I would have been playing the piano for 20 minutes before breakfast.
Two weeks later our doctor had seen me twice and had taken various blood samples. A virus was diagnosed, similar to meningitis. I was prepared again for school, but not quite the same person. I became lethargic, but battled on through and it was thought I would 'get over it'
In January, on the first day of the school term I was again exhausted. I woke up in a state of dizziness, blinding pain in my left ear. Another infection, more antibiotics. Another two weeks away from school turned into three months and a fungal infection deep in the inner ear. By this time something else had happened. I was in bed, curtains closed, shocked by quiet, loud noises. My enthusiastic nature had become an exhausted, lethargic, helpless nature; I was irritable, I couldn't concentrate. I knew I was ill, I just couldn't do anything about it.
A paediatric consultant decided I was afraid of school, was being bullied and should go back immediately. Our GP supported us, having already diagnosed my ME, and suggested a gentle approach to help integrate me back into a more normal life. Through the Easter holidays I was getting dressed every day and started back in the summer term. Two mornings a week at school became three, became every other day and before I knew it I was back for full weeks. A day at school needed lifts in cars there and back. The bed would be waiting for me when I returned at four o'clock and I did start integrating back into normal, what was by then, teenage life. Or did I?
I remember weekends in bed, not doing PE because I was 'tired', watching my brother and sister go on a bike ride and me having a quiet afternoon with my Mum. It wasn't the same, I wasn't well. My parents were great, just let me integrate into family life, didn't make a big deal about it. If I needed a quiet day, I had a quiet day, I had numerous afternoons on the sofa watching films, with the volume, brightness and contrast turned down to almost nil! I would fall asleep and no one would bat an eyelid. I wasn't made to feel odd or different, I was me.

Two years later, 1990, it was October half-term, the Sunday before school began towards the run-up to Christmas. I was playing a board game with my Dad and brother. I had my first seizure. Everything went downhill from there. It was the last year of school, mock exams were looming in the following spring and final exams were in the summer. I was a wreck. Everything scared me. I had another reason to miss PE, or have a day off school. My peers didn't understand, they weren't supportive and that just made it all the more difficult and confusing to cope with. There was just one friend who I saw every Monday afternoon, when we were put in the office of the Home Ec. Rooms to 'do our homework' (we would sit and chat for 2 hours!). She was ill too and we had a connection. While everyone else was doing PE we were sharing our woes and found an empathy for each other's situations.
Three years down the line I had attempted college and A-Levels three times. The regime was too much and I realised it early on, I just seemed to think that the only way in life was to do as they all do. Within a couple of months of each start of year I was in bed 24/7, having regular seizures and recovering from...overdoing it. How I hate that term now. "Overdoing it" might seem like a trivial pairing of words. But to me it is a disappointment, a failure, an absolute, epitome of deficiency and inadequacy. Overdoing it gave me bad things. Days in bed, confusions, seizures, humiliation, embarrassment. In those times I relied on others; by believing I could cope for myself, I just showed myself three days later that I couldn't.
In those years I spent months in bed, years without walking more than a few paces indoors or round the garden, I lost three stone in about 6 months at one point. Recovery was always my goal and with my family's support I reached it over time, but only ever so far.
The wheelchair has come in and out of my life twice and I now have it for a third time. I thought it was in my past but yet again two years ago I was guilty of 'overdoing it'. I thought I was becoming a healthy person, a 'normal' just like everyone else, person. Hindsight gives many things. I am sure anyone with ME or CFS will recognise these ideas. Putting those years behind me has been a regular thing through my life. Everyday has been the next step on the path to recovery. I think I may have finally found it. The one catalyst for this has been finally getting a foothold in the door of my seizures. For the first time I can see that by working together with my various doctors a combination of medication has been found which gives me control. I don't have the unenviable task of waking up in the morning and discovering a blinding headache, aching limbs, aching muscles which I'd totally forgotten existed and a memory wiped of the previous evening. This was frequent in the past, totally unpredictably a few times every month, two, three or four times a night I would exercise all my muscles without my knowledge! According to my husband I would also turn blue and decide to hold my breath for 2 or 3 minutes! Now that my seizures are much less frequent flyers I have the starting point. I found that point about 6 months ago. I was trying to keep up to date with friends, I was trying to be a dutiful family member and realised that my idea of putting it all behind me and continually climbing the ladder of health again was not an option. I had to find that bottom rung and sit down for a while, to give myself the stability to start climbing. I had done it in the past, the difference now was that it was my choice and I wasn't being pushed by my carers, my doctors or my seizures; I wasn't doing it with heartache and a feeling of failure. I decided to step back, sit on the floor and wait for calm to find me; I wasn't going to let the illness push me over to the floor. So I did it and I think I'm climbing again... I know I'm climbing again.

Thursday, 10 May 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.

Wednesday, 9 May 2012

Where do I start?

I believe in the chance, the possibility of recovery from ME. I always have. Procrastination is not something I do. The confusing mixture of symptoms, different for every suffer, will always baffle doctors I am sure. We have to realise that tonsillitis may be easily recognised as may the hacking discomfort of whooping cough, but everyone feels, sees and experiences the same symptoms differently. Any Doctor may say that one ear infection is much like the other, but I had ear infections that would find me toppling over with uncontrollable dizziness and sensitised by any noise above a whisper and my friend would have the same infection and go to school, run around the play ground at lunchtime and skip gladly home ready for another dose of antibiotics. ME affects each sufferer in a different way, is caused by many different infections and physical traumas and therefore presents with a mind boggling array of different major irritations and disabling effects. For this reason some sufferers will read this blog and think " I so know where you are coming from!" others will respond with " you what? That's not my ME!" I would like to give an insight to those who may know an ME patient, but don't fully see the consequences of the resulting symptoms. Also give hope to those who are in a similar situation to mine. I believe I am a positive and pragmatic sufferer, someone who has this illness and lives a happy and accepting life. We can battle together to find the table of peace and understanding, so that we may become friends with this illness; and eventually tell it to find a different place to stay.