Thursday, 27 September 2012

Monthly Achievements September

Yes as the months pass by, the title of this gets longer!
So what have I achieved? Every week, at least once I am able to go for a walk. I love this, it is one of my dreams you may remember. Yesterday I put on my coat and went round the block, having a sit down with some ducks by the river half-way round and came home very pleased with myself. Possibly this was managed because I did no yoga and virtually now walking or standing around the house yesterday, but hey ho! It was certainly a very pleasant way to use my legs. I particularly loved the fact that it was really quiet. We had just had a torrential rain shower and everyone else appeared to be hiding! I usually go for a shorter walk and hadn't managed a full circuit for a couple of weeks, so this was extra special.

The idea of cooking with food from scratch has gone well. I'm using my imagination and cooking things really quickly. Tomorrow is pork escalopes, which might be under the grill, or with some apple in the oven. Every weekend I also get the mixer into action and make a cake to reawaken my love of baking. OH loves that too!

Creativity. I am amazed that ive actually spent probably four hours over about four days, sitting at the table, making Christmas cards. I've organised them with envelopes and plastic bags all ready for sale, possibly at the library and already on Folksy! Also started a bit of sewing again. I'm making the tiniest rabbit you can imagine sewing. The instructions say nothing about sizing up the pattern but suggest this is all manageable on a sewing machine. I am changing the way the ears fit on and really struggled with the legs. So am convinced this is not the case, so my husband is probably enlarging the pattern as I type (during his lunch break on the office photocopier(shhhh!))

Monday, 24 September 2012


I've been crafting. Everything I do is creative, I don't follow a recipe in the kitchen; I make it up or alter what is suggested in the book. I make up my own knitting patterns and make it up as I go along when I'm gardening.
So the crafting thing has come about because of tidying so much in the last few months. I have come across so much in the way of art materials. These have been hidden from view so as not to tempt me. I get carried away with the passion of creating and can spend hours on one design without realising my tiredness or need for a rest. Now I feel a recovery starting to happen I will allow myself to start enjoying the creation while honouring how much my body can achieve.
This weekend not only have I enjoyed making Christmas cards from all my bits and pieces, I have found an online course to help me live as an artist. It will last 8 months and I feel it will give me a focus over the winter as my body regains some strength and gets used to more daily ritual day-to-day activities. The idea is that I will have regular support on how to be an artist, how to live and be fulfilled as an artist. I do so many things, depending on the season and my health, all of which surround my being an artist. Budgeting better within my business, understanding the marketing side better too, realising the full worth of my artwork (I only ever see the flaws, as I know every brush stroke which didn't go quite as planned!)
All this has to be part of my recovery, part of relearning real life. Most people I know who have followed this same path from recovery have found a focus after the initial focus on health with their specialists. Painting the house inch by inch, or learning a new trade, or gaining the qualifications to teach what they have discovered in recovery to others.
I am sure this is a good path to travel as I have always been an artist and my happiest times in childhood and as a young adult were sitting at a table with peace and quiet, colour and inspiration spread around me, creating something for someone else to enjoy.

Thursday, 20 September 2012

"Infinite Time and No Ambition"

One of my yoga teachers says this a lot. Yes I get it, but have thought it a bit much... we do have deadlines in the world of socialisation and I was going along the path of thinking Lots of Time and a Few Deadlines.
But I think I get it a bit more now!
If I don't finish something this morning I might be able to do it this evening or tomorrow. Then again I might be able to say " I know I'll schedule a time to finish it next month and then maybe finish it a month later if that has to be rescheduled too!"
The concept of Slowing Down has been part of my life for a few months now and I am letting it spread more and more by getting this new idea too.
Tomorrow I have friends coming round. Someone pointed out to me the "Second Breakfast"... The Hobbit is having a birthday tomorrow; 75 years since the publication of the first edition and the Second Breakfast is being held worldwide at 11am. I offered her my living room and kitchen to host an event and raise money for charity, offering tea, coffee and cakes (suitable for Hobbits!) I knew that if I needed to take the morning off, she would be there to host, I could go and lie in bed if I wanted to, or do a meditation half-way through if I was getting too much information in too little time.
So it's happening and I'm having a cook-fest kind of day as I can!
Easy recipes are becoming my forte and I'm preparing a feast of breakfast inspired cakes, muffins and slices.
Infinite Time and No Ambition comes into this... I can cook this morning, this afternoon, this evening and tomorrow morning, so there is no problem about getting it done. I don't need to clean (my cleaner came Tuesday evening and blitzed the living room, kitchen and bathroom!) It can all easily be achieved with time for work, rest and play... or as I call it, fun, fun and fun!

I thought you'd like to see a recipe I have used, I totally ME'd a complicated recipe from a book and made it do-able with a mixer and little effort. Here's my take on Jam on Toast...
Raspberry and Sesame Slice
line a 9"square baking tin and preheat oven to 190C
8oz/200g plain flour
8oz/200g porridge oats
8oz/200g baking marg.
put these in a food mixer and mix for about 5 minutes until it resembles rough bread crumbs
6oz/150g light soft brown sugar
4tbsp sesame seeds
add these to the mixer and pulse a few times to form grape-sized lumps
Spoon two thirds of the mixture into tin and use the spoon or your hands to press into base of tin so it's flat and even.
Spread 300g jar of raspberry jam(homemade is best, with seeds) over oat mix and then sprinkle the rest of the mix on top to cover jam. Flatten.
Sprinkle 2tbsp extra sesame seeds over top and press in lightly.
Bake for 25-30 minutes, until golden and cut into 16 squares while hot (leave in tin)
Allow to cool completely before separating.

Tuesday, 18 September 2012

Help Everywhere

I am constantly amazed at how many therapists, doctors, teachers of all kinds are out there offering help to sufferers of ME. All over the internet and in advertisements for massage therapists, yoga teachers, life coaches the helps is there. It is a mind-blowing field of information which can cost a small fortune! Scepticism appears in my mind with so many as ME is a complex illness. Those who have done many supporting studies and have proof of recovery are the ones who catch my interest more.

So many of them are using different approaches towards the same end. The body is in fear, physical confusion and the practitioners help patients find ways of changing these physical patterns. Gentle, kind, loving practitioners offer so much. Some ask a lot of money, some work for donation or offer lower prices for those who can pay only so much, and can run on lower costs due to the charitable foundations attached to the business. 

I have just found a book which is titled "Coping with Chronic Fatigue" I must have bought it so many years ago, because it was at the back of a bookcase and I had totally forgotten that I had it! It talks very simply about these familiar methods and puts it all in about 150 pages. (not a bad thing for people who can't read very often and have bad concentration and memory!) The need for personal connection cannot be put into words. So much of my recovery has been in the need for emotional support. My friends, family, specialists, talk to me on a regular basis, suggest new options... but only when I get to those points, not when I have read 3 chapters of a book in 2 weeks. One-to-one help, or methods with videos and information which can be used only when the next stage is reached, is so necessary. I definitely recommend it.

So why is it working for me now and might take longer for someone using the same methods? 
Firstly I have been using many of these methods for a long time already, they just never had a name or title and doctor attached to them? I know I had to be in the right place, financially and along my life path to benefit to the extent that I have from working with the specialists I have chosen.
I had worked through so many of my symptoms over so many years and found solutions for these. It took much desperation, determination and a lot of tears! If I hadn't done this I might be taking so much longer to recover to the same point as I am now. I am also in a place with a terrific husband who offers me unconditional support with this journey. I do not work, we are fortunate enough to have family and friends nearby who support me physically and emotionally. Without children or pets I can rest when necessary; I can have a day in bed or a lazy day on the sofa, lie in the garden all afternoon if I choose and have a lift to the surgery whenever I need to go. So many things in my life are going right and it is the years of experience with this illness that has given me the confidence to know what is right and make choices in my life to support that experience.

Friday, 14 September 2012

Social Boundaries

This IS one thing I find difficult. As I mentioned in Walking Boundaries so many wonderful friends can get the wrong idea if for one event I manage to walk across the room or look happy and dress nicely! Most importantly I set hte boundaries and I decide how much I can and can't do.
It is the explanations I might have to go through with the people who don't understand that knock me out. Question after question can be exhausting especially if there is no one else there to change the subject. "how are you" can be thrown at me and I have had a few text-book answers over the years. Currently it is "my good days are a bit better and my bad days aren't quite so bad"!
Usually that is enough now and I can ask the question back or find out about their children or holiday and the subject is changed.
Socially I don't go out for more than an hour or so. I am a member of a knitting group, a book club and a couple of other groups around here. But me actually attending is now understood better. I usually get there when the club starts, so there are sometimes fewer people and therfore less noise and less excitement (and less booze!) I go for a short time, my husband has a time in mind to pick me up. So when he knocks on the door I can leave without question. The decision to actually leave the house and go to these groups can be left to the last few hours or even minutes. I know how I am feeling and if tiredness comes on quickly in the evening I am able to just not show up and I will have an email in the morning letting me know how it went and checking if I'm alright. I also never make firm arrangements with people I know won't take a cancelation very well.
So how did I find these wonderfully understanding friends? Word of mouth is one of the best things. Local community groups have been my foundation for this. (some suggestions of these came from my neighbour, so word of mouth is definitely priority) I was a member of a choir and an amateur dramatic group in my twenties and made attending these my priority in the week...even just sitting and reading out a couple of lines was enough to make me feel involved. Through these groups I met people of all ages and know many of them still. I have also met so many of my friends through other friends. My husband and I started going to church again, when I was well enough, a couple of years after we were married. An occasional Sunday and I would have a good sing, a silent meditation and some community spirit. So many churches have the simplest things as coffee mornings children's outings or sewing groups and even if you are a totally different age to those who attends, I bet their children or neighbour will have exactly the same hobby or illness as you and will became regular contacts!
One thing I have done constantly is tell the truth. I get better feedback from everyone I meet if I don't try to be someone else. I am who I am and socially the more people who know that the better.
 "I have ME"
"oh isn't that the one where you're just tired all the time?"
"yes that's part of it, but it's an immune system disorder and neurological illness"
Say immune system and neurological to anyone and they get the picture well enough.

Tuesday, 11 September 2012

Walking Boundaries

I cannot emphasise enough how important it is to choose the right boundaries.
I am learning as the months go by that my recovery has to be decided by me. My physical limitations have to be stretched and pushed... but only so far and within good boundaries.
Where and when I decide to stretch those boundaries is probably just as important too. Going for a walk started with meditations around the garden, then walking, with my husband, where no one knew us, on flat ground, with a wheelchair in the car if I needed it. I wasn't panicking or being overly cautious, I was just aware of my needs and stretched them accordingly.
So where this happened was important. Being in a place where I was unlikely to come across friends was important. Friends can be the most understanding but can also decide to imagine the best and be incredibly positive ("wow you're walking, how about we go shopping together next week, or I bring my children round to see you for the afternoon!"). Also they can start worrying and suggesting the worst ("Why are you walking, you should sit down, do you want to lean on my arm, you are silly for doing this, I could have got you anything you need!").
So positive and negative input could be found, but I had gone out knowing that it was the right time and place to do this. I needed this input from my own head, rather than anyone else's. Also meeting people who want to chat and ask how you are when you're taking steps outside for the first time in many months is not going to help!

When I stretch these boundaries has proved important too. I first walked outside  as described above in a town centre... but late on a Sunday afternoon. Shops were quiet, people traffic was very low and the pedestrianised high street meant that I had no standing and waiting while vehicles went past. I have done the same as I started walking alone from the front door. I was doing walking meditations from my doorstep and short walks around the block now when there is less chance of meeting people.
One mistake I made this morning was walking to the doctor's surgery because I had to. I should have asked for a lift. Doing things because they have to be done at a certain time on a certain day is just not realistic. I know I have to do what my body wants to do, when it wants to do it. And if that means missing out or doing less than I hoped I know it is for the best.
I'm happy to know that I am doing well with my boundaries as they give me the chance to recover at my pace and not anyone else's

Thursday, 6 September 2012

Little Miss Sceptical

That was me. And for so long. When I was ill, bed-bound, housebound, finding so little energy every day, crawling to the bathroom.
If you recover from ME, you can't have had ME in the first place.
I'm sorry. I admit it.
Where and why has all this changed?
I have seen unimaginable changes in myself.
The last month has been such a revelation. I have seen myself grow beyond measure. And most of that has happened inside. I still have very little energy compared to the general populous. However what energy I do have is being used for my benefit and my body is accepting what I do as totally normal. Before I came here, walking around the house, having a shower, cooking eggs was totally scary, totally unnormal! My body would react, be scared, physiologically the reactions were uncontrollable. I could do nothing.
I am walking outside a couple of times a week, I am cooking with aids, I am enjoying life for what it is... and all this is done without the physiological reactions that define ME.
My whole system has changed and I have been the instigator in that change.
I feel liked I've proved a miracle. So much of it has been about having faith, believing in whatever helps. And its also helped that I've always been a thinker, someone who analyses, so being able to understand the reasons for it.
ME is a common sense disease. It is the body saying "hang on a minute, let me rest, let me breathe, let me have a chance to start over" It is appearing and being identified so much more in our modern world as society and modern life expects so much of the human body and so many of us haven't quite reached the evolution point which helps us deal with society and modern life.
Everyone needs to say, "hang on a minute, let me rest, let me breathe, let me have a chance to start over" once in a while and probably so many other diseases would reduce too!
So what can I say about this week specifically...
I had my first organic veg and meat box. There is a chicken ready to go in the oven tomorrow (I'll make sure OH is around to do the lifting!), we've eaten cajun pork burgers, today I'm going to cook fish from the freezer and we have fresh runner beans with mixed salad leaves and romano peppers ready to fill our bellies.
The one non-local thing (other than the organic bananas!) that came in the box was a mango, which is sitting on the window sill and will hopefully ripen by the weekend for an exotic treat.
Life is beautiful.

Saturday, 1 September 2012

Legs Playing Catch-Up

My legs aren't quite with it today. I have to stretch what I know I can do occasionally, to see whether another level of exertion is possible. Yesterday without my realising it I was testing my legs. It hadn't really been planned.
In the morning I did my usual wake-up yoga, then did a 45minute class about setting intentions and clearing out- specifically titled Waxing to the Full Moon (Full Moon was 2.47pm yesterday). Traditionally nature grows more as the moon grows in it's cycle (obviously with  manmade chemicals and light pollution hanging around now, that doesn't quite work anymore!) The class included some balancing poses, standing and also a Moon Salutation cycle. Sun salutations should probably be avoided by ME patients- that's my experience anyway! But as this Moon salutation started slowly, I was willing to give it a go. With my now better breath control, I managed quite well and as always I just planned to leave the rest of the day without much walking, now that I had started with a standing yoga class.
I then made the pie after breakfast and had to return three times to the kitchen to keep checking the pastry and fruit at 25 minutes, 35 minutes and 45 minutes.  That shows me the one failing of using my own guesswork rather than a cookery book for the kitchen creativity. Sitting in the garden with the kitchen timer wasn't a good idea as going in and out so many times probably ended up with a total walk similar to my average walking meditation.
We then went around the supermarket! Oops!
And popped in to see a friend whose front path is on a particularly steep gradient.
So I've had a sleep this afternoon and an easy morning, just getting in the car with OH to pick up an internet order and I had no option but to use the wheelchair. I have a willing husband for cups of tea and Paralympics to keep me going.
It has been really nice to choose to use my legs, even if I don't have the choice for a couple of days now. I would not go back and undo yesterday.
This is why I get Disability benefits. If I can't do simple, necessary walking more than a couple of times a week, I definitely require help!