Simple pleasures

I have always been easily pleased. My favourite Christmas presents are always Christmas socks! I wouldn’t say I have expensive taste or like fancy food. Diamonds just don’t do it for me.

I think being this way stood me in good stead for ‘The M.E. Years’. Since being ill it has become even more important to smile about the little, simpler things in life. Illness has given me the opportunity to look at things a completely different way and appreciate them much more. A different perspective. This year, for perhaps the first time ever, I was aware of the leaves turning orange and red as Summer ended and Autumn began. Before, I never really took much notice of the changing seasons. It took only two weeks for the cherry tree across the road to change colour completely.


As I see things, I am going through a life changing experience. Not many people get to have one of those…


Blossom and blue skies



Tightrope

One of the trickiest things is not overdoing it on the days when you feel a little bit more alive. I must avoid the ‘boom and bust’ cycle. It is so hard not to go ‘all out’ on the days when you seem to have a little bit more energy and do the things you have been unable to do for so long.

Today I desperately wanted to try to bake a cake. I have been craving cake all week and now that there is gluten-free flour in the house it seemed the ideal time to do it. But I knew I was ‘on the edge’. I have to be careful not to overdo it, even though I felt like I could do it at the time. This week has already been ‘busy’ for me with spending more time on my laptop than usual because I started this blog. I had to reign myself in. When you have M.E. you have to do this a lot. You have to be regimented. I have to do this when I see my friends. I would love to stay out and see them for hours on end and I desperately want to, but I can’t. I mustn’t. I mustn’t get ahead of myself. Doing too much is not good. Running on adrenaline is not good either. The aftermath is not pleasant! Adrenaline knocks me for six! I find it hard to know when I am running on adrenaline but today I think I spotted it and so stopped before I got ahead of myself. I have had to learn to be patient. My cake will have to wait. Perhaps somebody would like to make it for me? 😉 The flour is ready on the side in the kitchen waiting for you…


I always joked I was allergic to exercise…

Exercise. Hmmm. A tricky one. Today is perhaps not the best day to tackle it either as my brain is protesting because I have started this blog. I will come back and make sure it makes sense when I was had some ‘purple time’ and maybe a day off from my laptop.

The week before I first felt ill in 2010 I joined the gym. I had put on a few pounds while being at university and having nights out dancing as my only real exercise. I joked that I was allergic to exercise because I didn’t fancy the hard work of getting fit again 😉 Within the month of joining the gym and starting to get fit I had lost most of my mobility. Now, with M.E, it is as if I really am allergic to it. My symptoms flare up after the effort of merely having a shower. Making my own dinner is exhausting (on the rare occasions that I have to fend for myself.) It is as if I have run a marathon whilst suffering with both the flu and the worst hangover of my life. Lovely!


Exercise for me as an M.E. sufferer is not what you would imagine. It is not going for a walk, to the gym, for a swim. It is the things that I took for granted before. The everyday things that people should be able to do without giving it a second thought. It is having a shower and washing my hair. This is using muscles that my brain and body have decided are now too weak, sore and painful to do anything at all. Exercise now is making my own cup of coffee and walking to the kitchen from the sitting room to do so. It sounds silly I know, but that is how poorly we are.


I have been advised to only take advice regarding exercise from M.E. specialists. I was given stretches to try by a physiotherapist specialising in M.E. They are as ‘simple’ as turning my head from side to side and flexing my ankles. It is to prevent my muscles from wasting away from lack of use. Since October 2011 I have managed to increase my stretches from repeating each stretch just once, to repeating it 6 times a day. This is the rate at which we are able to, and have to, work. For some of us even that is too much. For others, they may be able to manage more. No two of us are affected by this illness in the same way. We cannot compare ourselves against another.


M.E. is still so misunderstood. Some of us are prescribed exercise by medical professionals as a way to recover. In desperation to recover some of us have pushed our bodies and trusted that what our doctor has suggested must be accurate, but inevitably we relapsed because our bodies now work differently from ‘normal’ or ‘healthy’ people.


I think it is partly our ignoring the advice to exercise that gives us a bad name. People think we are lazy and are ignoring the doctors because we don’t want to get better. People think we must have the wrong attitude. They can’t understand why we aren’t willing to try absolutely anything to get better. But we are poorly!!! Would you go to the gym if you had the flu or a stomach bug?! I imagine exercise is rarely prescribed as a treatment for many other illnesses…welcome to the world of an M.E. sufferer.



Slow and steady wins the race


Progress, recovery or improvement is painstakingly slow. For some of us there may be none at all. I have to accept that it is highly unlikely that I will ever return to my pre-ME energy and activity levels. Like I said to begin with though, I am one of the lucky ones. I have already seen improvement and made progress towards recover. I have been able to use the stairs and sleep in my bedroom for almost a year now. If I could go a little jig to celebrate I would! I remain hopeful that I will continue to improve, or at least not go back to the way I was this time last year. I may be naive in looking on the bright side, but it is just the way I am and I am thankful for that. 



This little guy was clearly moving faster than I was, hence my inability to get a non-blurry photo…

Unconquerable soul

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul. 

William Ernest Henley