No respite

I wet myself this morning. What a lovely way to start off today’s post! Sorry. It’s okay to laugh. I did. It was either that or bawl my eyes out in despair at yet another example of one step forward, ten steps back.

I am 24 years old and I wet myself.

This hasn’t happened for quite some time actually. I know why. I have been less regimented recently with my stretches because I’ve been substituting them for baking or painting or even sewing. I can tick the ‘arm stretches’ box by mixing the baking ingredients in a bowl. My poor little arm gets enough of a ‘work out’ doing that and so certainly doesn’t need me to attempt ‘shoulder shrug x8’ throughout the course of the day. So I haven’t been as regimented with my arms stretches, or my ankles stretches because I can tick that box just by using the stairs. Because of this, though, I have forgotten to remain vigilant with my other stretches. Pelvic floor exercises and core muscle strengthening to be precise. These are the muscles that have become so loose that I am unable to get to the toilet on time.

 Because of the nature of this illness all of my muscles are shot. I am exhausted right down to the tendons in my knees and the muscles in my eyes. My pelvic floor muscles have, therefore, also been effected and are no longer strong enough to do their job properly.

The CFS/ME clinic have an M.E-friendly physiotherapist who gave me ‘simple’ stretches to attempt everyday. The debate about this condition and exercise is ongoing. As I’ve mentioned before, exercise isn’t as straightforward as going for walk or jog around the block for an M.E patient. Exercise is now building myself up to be strong enough to make my own cup of coffee. These stretches have done that. I am not an idiot. I know not to push my body and, in the very beginning when I did, I suffered for my exertion like you would not believe.

At first it was just not possible to even attempt these ‘simple’ stretches. Now though I can manage them most days but they are all still not yet second nature. On my worst days I obviously have to adapt them. When you are confined to bed with a condition like ours being able to flex and relax your fingers is something we can only dream of. On these days my ankle stretches change to trying to wriggle my toes every now and then. It is harder than it seems. Imagine that. Being so ill and weak that you can’t wriggle your own fingers or toes. These are the days when I need to be spoon fed. These are the days when I am living in hell.

You see, there is no respite. You think you’re doing okay because you’ve been well enough to get out of bed and get washed and dressed for a few days in a row. You’ve even managed a trip out to a coffee shop to catch up with friends. As if that wasn’t good enough you’ve managed a couple of 10 minute drives this past week too. But I forgot the basics, or I was too worn out from doing these extras that I didn’t have enough energy left to carry the basics out. My balance has also been off again recently and I am struggling to walk in a straight line. This may be because I have also been more lax with my neck stretches. There’s a link apparently and I have noticed improvement in my balance since I began turning my head from side to side a few times a day.

Recovery from this condition is a full time job. It is my occupation. In the same way that teachers have to take the register every day, I have to use all the tools handed to me to attempt to make some kind of recovery and get some control back from the dreaded M.E. There is no time off though like there is in most jobs. This is constant. This is life with a chronic illness.

While on the surface I am so much better than I was in late 2010, my body is still incredibly broken. I have to treat it kindly everyday and nurture it to become strong again. Strong enough so that I don’t wet myself!