I just don’t do

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…..

5 thoughts on “I just don’t do

  1. “I used to be so organised and so precise about everything”, oh Pamela, this post has struck such a chord with me today as this is what really gets me about Fibro and whatever else is causing me to be like this. I may not have got to the level you’re at currently and I know that I go out regularly and do more physically, but it’s more and more of an effort. I am now so removed from who I used to be in regard to paperwork, phone call, organising, etc. I did clear out my file case over Christmas and that had been a long time coming, used to do it much more often, but while getting in a state the other day looking for paperwork, as there have been changes in recent months with me foolishly taking that temp job, Sept 13- Nov 13, I noticed I have at least 3 folders that have volumes of paper in them. This is partly why it was so stressful trying to find yet more stuff for new ESA claim and all the other corresponding bureaucracy that has followed on.

    So, I really need to deal with that sometime quite soon! I find myself wondering how the time just goes and what have I done with my time, but I think that’s because I find it hard to accept how much slower I am at everything and it takes me so long to do more and more stuff. Then, you add in the fatigue and brain fog that follows even the most simple of things.

    Don’t have to see the Doctor until 2 months from last time (18th February)as he’s at last given me a med cert for longer than 1 month (hurray) so anything that I’m concerned about or I’m not still convinced he’s taking seriously enough, will have to wait until then. Apart from the choking becoming worse, I seem to have developed another newish thing in that I’m getting some strange sickness thing for no apparent reason, the first time was a couple of weeks ago, when I accidentally put too much rock salt(got the top wrong)on to my scrambled egg. It’s just happened again now as had main meal at lunchtime as I’m out this evening, had something don’t usually have, chicken with an Italian “Chicken Tonight” sauce on it&some pasta. I don’t understand it as I like chicken and love Italian, often have spaghetti bolognese, would have thought that was richer? Only thing I can think of is my stomach is getting more sensitive, don’t like spicy and the sauce has garlic and black pepper in it? I’m the sort of person who rarely gets physically sick and have a strong constitution when it comes to food!

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  2. You really moved me with this post. What a brave woman you are and have been. It’s good to need someone else when it all gets too difficult to cope with and I’m really happy you’re not alone.

    Your husband sounds amazing.

    Much love and strength your way.

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  3. Hello Dear Heart,
    I appreciate that you write from your reality, holding no truth behind. I blog from my truth. I offer up opportunities for my peers with chronic pain to listen and to choose their own ways. I have always been that strong minded, organized person, even in pain. These last two years, I lost this ability. Letting go has been and still is, an exercise in realizing my new truth. So much of what I did for myself, and my loved ones, is now not possible. Unlike you, I am far away from accepting any of this gracefully. My loved ones are still struggiling to understand that this is the new me. I hope we all find our strength to allow peace in the door with acceptance of limitations, less organization and abilities to cope.
    I was the glue. I am now the thread. From what I know about threads, they are much stronger than others realize. Blessings, Lucinda

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