I have been lucky. I was able to wipe the slate clean and start over, from scratch, building a new life for myself as a sufferer of a chronic illness. I have no other commitments other than getting better. That is my one and only focus really. For so many, this is just not possible. Some people are still able to work, and can’t afford not to. Many are raising families at the same time as feeling incredibly poorly. Many more do not have the help and support of their family and friends like I do.
In the same way that it is impossible to eat a 9 inch pizza in one bite, it is impossible for me to perform tasks in one go. It is now necessary for me to break down my day into more manageable chunks, in the same way that you cut a pizza into slices.
Take ‘getting ready’ as an example. The ‘Old Anna’ would have taken this as one, simple task and carried it out without a second thought. Now things are different. The task of ‘getting ready’ takes much longer, and not because I am the type of girl to spend hours in the bathroom making myself look my best for a night out. This once straightforward task has now had to be broken down into many, more realistic, tasks.
I must first tackle the shower. I have a stool to save my legs and as you know I have had my hair cut very short to save my arms from struggling to wash it. I avoid baths because it is hard for me to get in and out of them. My core muscles struggle with keeping myself from slipping under the water completely and I was never really a bath person anyway. Shaving my legs is absolutely exhausting! It was never something I did everyday anyway but now I leave it longer as have to schedule it in on the weeks when I don’t need to use my energy on other things. This is all so I am not overdoing it. If I happen to cut myself while shaving, I bleed for a lot longer than I used to for some unknown reason so I have taken to using hair removal cream instead. This, too, is very tiring but I have my stool to sit on and a few minutes of rest while the cream works it magic before needing to be removed. I have to rest while showering. It is a case of shampooing my hair, then having a little break. Then shower gelling. Break. Face washing. Break…
This once easy task is now exhausting. I always need, and have, a rest after a shower before getting changed. I just tend to sit on my bed for a few minutes, with no TV or music. Purple time if you like. I am now ‘well’ enough to tackle getting dressed all in one go. Before it was underwear on, and rest. Top on, and rest. Trousers on, and rest. (Their were times in the beginning and during my last relapse when I needed help to get dressed. I don’t like to think about it.) After dressing I, you guessed it, need another rest. This rest is usually a little longer than the others. On some days having a shower and getting dressed is so exhausting that it writes off the rest of my day. Some days it is not possible to even attempt getting out of my pjs. Not because I am lazy and want to slob around all day, but because I am poorly.
Next I have to brush my hair. My arms are now exhausted from the shower and getting changed but with my short hair it is now much easier than it once was. I no longer bother with make up or moisturiser or hair products everyday. I save my energy for watching TV, chatting with my family, reading, using my laptop, making myself a cup of coffee…
On the days when I see my friends I tend to apply make up and so after my rest from changing I might sit in front of the mirror and, at a painstakingly slow pace, paint a mask on to my face, giving my arms a break every now and then. I find it hard to let people see me as I really am and prefer to hide behind the make up. Also it makes me feel good to see traces of the Old Anna again. I rarely wore make up before but now it seems I need it to make me look like my old self. My face is incredibly pale and a different colour from the rest of my body. I look poorly. Before, I was usually quite tanned. When I see my friends I might also try to do something to make my hair look less like Wolverine and dig the straighteners out. My sister helps me with this sometimes (although I have lost count of the times she’s accidently clunked me on the head with the hairdryer!) I like to look as near to my old self as possible; to have a few hours of fitting in and pretending that I am no different from everyone else.
In recent months, I have got better at not hiding the true me though. I bought some fake tan to make my skin look less see-through and to look a bit healthier. I rarely use it anymore. I have photos taken where the only thing the same as the Old Anna is my smile, and my ridiculous eyebrows! I have accepted the fact that this is how it has to be for now. I am too tired and poorly to bother hiding behind a mask of beauty products. I am learning to love myself just as I am.
So anyway, what I’m saying is that we have to break everyday tasks down into tiny pieces in order to make them more manageable and achievable. Cooking a meal would be the same. Chop the carrots. Rest. Get the eggs out of the fridge. Rest. Boil the water and rest while it’s boiling. Open a can of tuna while sitting down. Rest after you’ve done it, if you were strong enough to manage it by yourself…What on earth am I thinking of cooking here?! Haha!