I really have to push myself today as I need a shower. I needed it yesterday as well but I just couldn’t find the strength inside me to get off my backside and sit in a small cubical. So OK it isn’t as simple as that, the big problem is the overall effort it takes and that horrid sensation of pin sharp water digging into my skull. Add in the muscles that get too tired to properly wash my hair, or worse still finding that once you have that much-needed conditioner in, I can’t manage to wash it out properly. Finding yourself soaking wet and exhausted is the biggest issue or all, the only option to get dry is to wrap a towel around myself, and wait. I stood up several times and headed to sort out my clothes but I couldn’t even find the strength to complete that first step, the chance of managing the rest was slim. Showers, unfortunately, aren’t like most other things, you can’t leave it half done and return to finish it later. Adam has offered over and over again to help me, even if not in the shower but with getting dried and dressed, but I want to do it myself until the day I can’t do any of it alone.
All my life been pigheaded, I don’t need anyone else to tell me that, but when you have been independent from an early age, the idea of someone else helping seems somehow so wrong that even I can’t find the words to fully explain it. It takes a lot for me to ask for help, even to ask him just to fetch me a glass of coke somehow just doesn’t sit easy. A couple of weeks ago I told Adam that I really did need his help in one area, one that was needed not due to any physical problems but more a physiological ones. For months I knew all too well that I just haven’t been doing things that needed to be done, I always somehow found a way of ignoring it and when I couldn’t ignore it I would put it where I couldn’t see it. Even when it was something as simple as a letter that required a signature and putting into an envelope for Adam to post, I would put the letter under a pile of stuff, or in the kitchen folded so I couldn’t see the details waiting to be done. Just like having a shower, I keep putting things off, moving it into the next day or the next day after that, so I asked Adam to take on the task of pushing me into action, to not allow me to put things off and if that meant him bringing a letter to me with a pen and sticking on my lap, then he was to do it.
I used to be so organised and so precise about everything, that finding myself now in a position that simple things are running away with me, is so wrong. As I said to Adam my life has now got this huge block in it as I now “just don’t do”, anything that needs to be done isn’t and I can’t any longer trust myself not to put off everything for a crazy length of time. Having to admit that this area of my life now needs to be in his hands was a huge step for me to take, so far he is still only gently reminding in his own way, his first attempt still took me 48hrs to comply. He left a letter sitting open on the kitchen counter needing my signature, but said nothing, so I did nothing. Clearly some connection in my brain is playing up, but it’s so bad that without help I honestly believe I am heading into a position of doing nothing at all ever, other than sitting here, or sleeping. It is actually really hard to hand over that type of control to someone else, even if they are the person you love the most in the world, I have given him permission to take on what I suppose is the role that a parent would usually be in, pushing their kid into doing what they should each day. I know that this is only the first of what will be a growing list of personal things that I will eventually have to put into his hands.
I know that there is diagnosed damage to my brain, diagnosed about 9 years ago as progressing, I haven’t asked for more tests as I don’t need them, what it is doing to me is clear for all to see, knowing this is not me doing it, doesn’t make it any easier. I know that lesions don’t actually eat your brain, they more block of connections and as they spread they remove more and more, if you want to find the most scary thing about MS is, well it’s right there. If a limb stops working there are aids, braces and son on, a list as long as my arm of things you can do to cope with what has happened. When areas of your brain stop working, well all there is, is others people’s brains to fill in the gaps. Whatever the chronic condition is, there will in time be for all of us things that we just can’t manage any longer, some of us, like me, are lucky to have someone else who can keep an eye on us, push us, make sure we are safe and that we are as well as possible. Despite everything, I know just how lucky I am to have someone who cares so much that they are happy to be there for me.
Please read my blog from 2 years ago today – 25/02/12 – Changing Life
I woke up this morning tired, not how you are supposed to feel after 9 hrs sleep, I guess that means I will be tired all day. I actually can’t remember the last time I woke up feeling really great and bouncing with energy. I remember that great feeling of a new day with expectations of things to be achieved and…..