Every day I tell myself this is it, I have done it, at last I have found the way to get through the things I have to do each morning faster, every day I find myself here just at about the same time as I do every other day. Just like every other day, I am beating myself up about it. Why is it that no matter what happens in life we are always the ones hardest on ourselves, we are the ones who actually make our own lives tougher than they should be, just because we have stupid expectations of our own ability. Even now although I haven’t worked for years, there are nights when I dream that I am still in the office and that I am trying as I always did to keep all the plates spinning, despite no one expected me to do half of that which I did daily. I have even woken in a cold sweat and suddenly awake as I have been dreaming that the phone system was down and once again I was stood there staring at the banks of rigged components that made up the switch, not knowing exactly what to do, but biting the bullet and doing the only things I could think of, in the fear that I might kill it for ever, bringing the entire company to a stand still for days. I was never trained to do my job, I learnt as I went along something that I suppose sums up my life, I was never trained to do anything, I just did it. It is so often our own expectations that drive us on to do better, but you would think that there would be a point when you would actually start to be nice to yourself and to say well does it really matter, without snapping back, of course it does.
I am still waiting for the day when I will just accept the fact that I am ill and what I can, or can’t do is limited by that simple fact. Don’t get me wrong I do accept the fact I am ill, I fully understand what my condition can and has done so far, but for some reason I still just can’t fully grasp how limited I am. Despite all the years of adjustment, all the years of having to unlearn how to keep a home, do a job, be a wife and on and on, there is still this bit inside of me that wants to scream, I am not ill, I can do anything, just watch me. Totally nuts when the same person finds it hard just to get to and back from the toilet some days. It is almost as though intellectually I have accepted and moved on, but my sole just can’t. I don’t know how else to explain it or if everyone in my position feels exactly the same, that’s why I am writing it down, just in case there is someone reading who feels just the same way, well hello, your not alone.
In some ways those are the two hardest thing about illness, all the adjusting you have to do and that constant feeling that you are the only person who is going through what you are, because you haven’t met anyone you feel comfortable enough to ask about it and all that literature that fills the web, just doesn’t have the answers you are looking for. I remember regardless how many people there were around me, giving me advise and trying to help, there are always going to be bits of being ill that you are totally alone with. I could write a million words about adjusting and I bet that every person who reads them, looking for answers would find their main one missing, we all have that one thing that bothers us more than any other at that precise minute. Trust me, they really do change all the time and today’s trauma, will be totally forgotten in a weeks time as you will have found a new one.
Adjusting to any progressive chronic illness never ends, you have just got to grips with the fact that you can’t do one thing, when something happens and you have to learn again and again, the pattern just keeps going on. Just like pain, you think you are living with pain you will never get used to, but you do, as you get used to it you for a while will find you can do more before it reaches a point where you have to stop, but then it gets worse again. The progressions never end, pain rises, disability grows and you adjust with it all, always hoping that this is the point where it will stop getting worse, but it just keeps going. Sometimes it gets all to much and you don’t want to adjust any more, you don’t want to have to find yet another way of doing something, sometimes you just want it all to stop, not because you want to stop, but just because you want a break from it all. That voice inside is shouting I can do it and I am going to, it’s well meaning, but it isn’t practical to listen to it, as all you will do is exhaust yourself and make things worse.
I have adjusted from a truly active person both mentally and physically to someone who would just like to do the housework, or cook a meal, but I can’t. I am not stupid enough to think that my illness will stop here at this point, any more than it did when I hoped that giving into the wheelchair would mean my body could rest enough for me to continue at that level for ever. My adjustments have along way still to go and I kind of get the impression that they will never end, any more than any of us actually truly ever stop learning. Some adjustment will always be easier than others and some I guess will eventually be impossible for me to do alone, but as long as I can see the good in the changes I have to make, there then has to be a point on working on them.
Please read my blog from 2 years ago today – 28/04/12 – Brain fog or custard
Two Rooms Plus Utilities 
Oh Pamela, this really speaks to me today and it’s so hard to explain to anyone else who doesn’t have these conditions/limitations. I have thought for some time now that I had full accepted the physical limitations that have happened to me, but have I? Because I still go out and am “active” up to a point, maybe that’s why I can fool myself, but I don’t think I have fully realised how limited I am now, compared to being “normal/fully able-bodied”. It’s not just the physical things I can’t do, it’s also the crippling fatigue, pain levels and brain fog, not keeping up with conversations etc.
On Saturday I had my visit to London from Norwich to meet my younger brother (11 years younger than me)we had booked to see a theatre music show in the afternoon and usually have a meal beforehand elsewhere. Well, as usual, I was exhausted by the time I got to Liverpool Street, just from the effort of getting up earlier, getting ready, getting to train station and the 2 hour journey. My brother has never been a very empathetic person, much caused, I’m sure, by losing our Mum when he was 2 (he sadly has no memory of her)our Dad was useless, he married again to a hideous woman who hated kids and he and my 3 sisters has an awful life with them, I had long flown the nest by worst of it. He had to leave home at 18, didn’t cope well, got in with a bad crowd, ended up in prison and finally came to live in England with the help of my 2 sisters, who also live here, in 2001. He’s never lived with a partner, doesn’t like or want kids, so has only had himself to worry about. Apart from working full time and very hard, all he wants to do when off, is go to pubs, clubs etc., and drink a lot of alcohol. Sadly, like our Father, this has got worse and he has had a couple of major accidents, due to this, last one was 4 years ago, when he got off the last train from “town”(meaning London)to his home in north Kent, about 40 mins by train. From the little detail we know, he fell off the that train getting off, hit his head and was lying in that blood for a about 6 hours, before the first trains and staff came on duty. He was in hospital for a while, my sisters, who don’t speak to me (no relationship since 1986)had to find my phone no and call me to tell me late one night. I went down to visit him in hospital and apart from a big gash on his head, bit of memory loss, I pretended that it couldn’t be that bad. They put him on anti fitting medication for 6 mths afterwards as he had seizures in hospital, but then he was let go.
Since then, I have found him much worse, despite him saying he’s sorry to hear about my “difficulties”, when speaking to him on the phone or being with him in person, he says the most inappropriate things, makes disparaging comments about my slowness and other things, dressed up with a sort of laugh I thought, but is really a snigger. It has also got worse each time, so it borders into rudeness, hostility and I physically am rushing, struggling to keep up with him, the noise of London, the tube&everything making it worse. He will have at least 2 large strong, alcoholic drinks with lunch, we get to the theatre and where I’m trying to sort the seats out, he’s ordering drinks for interval, then rushing to get one before going in(I don’t drink at all, not since 1989, went to AA, can’t stand smell of it!). The seats were really cramped, it was full and I couldn’t find anywhere to put my stick, drink etc.,was trying to take painkillers, got really flustered and mumbled about wishing the theatre had warned me when I rung to book the seats.(I usually book the end seats on aisle, so I don’t have to try to climb/scramble past people) He then said, quite crudely, what did I expect them to do, none of seats would be ok for me, I replied if they wouldn’t let me have the wheelchair user ones, maybe I should be ask for the seats in the middle of the row. He then asked what would happen if I needed the loo but also what if he needed to get out for a drink etc?!!! I try not to drink at theatre so I don’t have to go to loo much and always arrive early to sort seat out. The going up and down some stairs at underground-exhausting, grappling through crowds trying to keep up with him, him talking to me and I can’t hear as he speaks very low&deep, getting over heated. I purposely left only about an hour and a half after show ended for my train back(you have to book seats on timed train)so that there wouldn’t really be time for much else after it. We got back to Liverpool St station and he says , “lets go for a drink”, proceeds up an escalator out of station to massive Wetherspoons, me trailing behind, it’s packed, no seats, he turns to me and says, “we could go upstairs” the stairs weren’t even close to where we were! I snapped but tried to keep cool, I said there was no point as it would take me too long and likely no seats, plus I need 10 mins to start getting on platform, find my carriage and seat etc. He then said “lets go back down and go to cafe”. This all probably sounds petty and maybe not much to other “able bodied persons”, but there were other comments too and really quite hostile. (He was also going out drinking after I went back) I have said in the past, why don’t you come to Norwich, there’s plenty to see and do, he just said, “maybe I should sometime” and it was never mentioned again.
Anyway, I got on the train without any water/drink to take my 8.30-9pm tablets/painkillers, was so glad/relieved just to get on train and it was quiet thankfully. When I got back to Norwich station, had to but water and sit taking tablets, by time I arrived back home, was almost crawling and felt so miserable, took any supposed enjoyment from it and I will suffer for days now. The sad thing is, he has no idea he’s doing anything wrong and it’s always him asking to phone me or to meet up, I never suggest it, would be happier sending cards, odd text here& there. I adore my Grandchildren and they’re a big part of my life, but he shares no interest in this and gets funny when I say not convenient to phone as I have one or other child, then I think I’ve got out of it, but I’ll get a text with another week day evening he’s off, he works over 7 days, 2-10pm shift and he never wants to phone if he’s off on weekend as that interferes with his going out!!!
For, I don’t know how many times in my life, I’m put in a unresolvable situation, not of my making and which does my head in as the saying goes!!!
It’s odd how I like to pour all this out to you Pamela, bit like going to a consellor or confessional?!!
Take care, look forward to your next post.
Marion xx
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“It is almost as though intellectually I have accepted and moved on, but my sole just can’t.”
I have the feeling that it’s because our real selves, minus the space suit, could do anything, anywhere, in the blink of an eye. Somehow it never loses the “memory”.
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