I was dragging myself around the house yesterday; there was no energy to be found; not anywhere, no matter how hard I looked for it. I have often tried to work out which is worse, fatigue or pain? It’s hard to decide, as separating them, at times, is almost impossible. If you are fatigued; your pain levels rise; if you have bad pain; slowly your fatigue will rise; a vicious circle, that there’s no way of breaking. Even if you take yourself off to bed, then just lie there, doing absolutely nothing, the circle will continue. It will only leave; when it feels the time is right; you; have no other choice; other than to just get on with it; hoping every second, that it will just go away. If, I am making it sound truly grim; well; that’s because; that is exactly, how it can feel. Despite the fact, that I have spent years perfecting my acting skills, I have never found the technique that stops me, from looking tired. There isn’t even any makeup, that will cover that hangdog expression, it just sneaks onto your face, without permission. The only guarantee about fatigue is, someone, will without fail, remark on the fact, that you look tired. Just in case, somehow we had missed that fact and actually didn’t know. These days, Adam rarely says anything. He has learnt that it is probably, the most irrelevant statement that he can ever make. I just wish, that his face had learnt the same lesson. That, though, would mean, he is a better actor than me, and that’s not allowed.
When our partners, also become our carer, even in the early stages of their new role, they worry even more about us. The fact that I have handed over all the everyday chores; followed by him replacing my brain; plus giving me orders to perform everyday tasks; seems to have turned into permission, to be my resident doctor as well. I know that his comments and questions are all based in genuine concern. That his knowledge of my conditions; is probably equal to mine; as not only; has he been by my side throughout; he too has trolled the internet, and reads every word that I write. So I do fully understand; how his responsibility for the physical care of me; the knowledge of my missing memory; and my erratic brain; has turned him into a constant worrier of what next; and concern as to has she even noticed, this or that. Most of the time; it is sweet; caring and loving but when my good side is in hiding; and I am so tired that my eyes want to hide too, then I struggle to see the love in his words and actions. When I am rational; it’s easy, but I fear as time goes on; and as his role expands to cover almost everything that life requires; that I may not always, take it with good humour.
If you were to ask anyone, including Adam himself, the fact that he suffers badly from being moody, is a well-known fact, and totally recognised as just how he is. Most of the time, it is something that I have totally learnt to ignore. His moods mean nothing most of the time. Yes, occasionally, they are triggered by events that anyone can see, but most of the time, only he knows what they are about, or he just hasn’t even noticed it, until someone says something. A few moments thought, and he will apologise, an apology that always contains, “Sorry, I didn’t realise….” Equally, I don’t need anyone to tell me, that as this illness progresses, that I am becoming more and more affected by the compound frustration it causes, plus the confusion it produces. I can fly off the handle over what others would see as nothing, and I don’t even notice, once more I’m not quite shouting, but not far off. Adam, well, he just lets me get on with it because he knows it’s not me. So far, we have muddled along quite content, making allowances for each other, and not bothering over any of it, but that is so far. I can’t help but worry about what the future will bring, as my brain fails me more and more, and I get increasingly frustrated, with everyday life. I fear that I won’t remain so forgiving of his moods, and he won’ t be able to endure my anger at nothing, being taken out on him, simply because, he is the only person around.
Relationships are all about balance, but our balance is being pushed constantly already. Just now; although I can’t control; or even recognise most of the time that I am once again; losing it; some of the time I do; and I can pull back, but for how much longer. As I push that balance more and more, I worry about him being able to cope with it and me. I am almost positive, that this is something, that must worry everyone in my position. It is one of the things that seems so wrong about partners, being expected to become carers. I would personally prefer to take my frustrations, anger and inability to cope at the time, out on a complete stranger. Then returned into his care at the end of the day; calm; clean and content; a little like a Victorian child; seen and not heard; just presented daily at their best, to their parents for an hour or so. If I can’t cope now, with him seeing me go through a bad spasm, how am I ever going to cope with him seeing my future, without me turning into a total wreck along the way. Add in his moods, and I can’t see how we are going to get through it, without destroying each other along the way. Silently, I have been worried about this clash for a long time. Yes, I know it won’t all fall on Adam, that there is and will be, help for both of us, yet there will still be enough hours, to make it hard for both of us.
Without a doubt, for both of us, the future is going to be the hardest part of this illness. I hear daily on Twitter from people who are so many years behind me, but just as I was at that time, not sure how to get through the next few days. Trust me, where you are right now, is a piece of cake. I’m not belittling in anyway their feelings, fears and concerns, I wouldn’t do that, as my memory is still clear of how it feels through every stage. Luckily, I believe our minds protect us, they make it impossible to see forwards much more than the next few months, maybe a year at most. Yes, we all think we can see how it will be one day, but our view of that is constantly changing. I have learnt that our fears are normally unfounded, to the stage we are at. I don’t have that many stages left, the reality is getting closer by the minute and with it, the clarity that I see it. The things I once thought that I would be fearing at this point, aren’t the things that I have found that I do, now that I am here. I thought; I would worry about becoming a dribbling wreck; that I would be terrified at the possibility of losing my mind; that my fear of pain would have me rushing to my doctor side; demanding that things were put in place now; just in case, tomorrow it arrived. The reality is very different. I fear, being locked inside; unable to speak or make myself understood. I fear, that my reactions to frustration may change from words to physical lashing out, that I will become someone I don’t want to be, someone that just isn’t me. Most of all, I fear, what will happen to the relationship between Adam and me.
Adam has never made a secret that he is no great lover of children. He has always said from the day I told him I couldn’t have children, that they hadn’t figured in his plans. He without a doubt, doesn’t have the patience to be a parent. If he was faced with having to take care of a toddler for a weekend, he would be pulling his hair out and in a mood to top all moods, by lunchtime on the first day. Don’t get me wrong, the child would be well cared for, it would be him that would be suffering. That knowledge never used to bother me at all, but now as I see myself becoming more and more reliant on him, it is starting too. I am slowly degenerating, I am becoming no better than a child. Without a doubt, the time will come when between my physical disabilities and my failing mental capacity, the comparison will be clear. I am going to be that child he never wanted and there will be nothing, I can do to change it.
I am holding on to my discoveries of the past; that what I imagined and reality never match up; but somehow, my fears now, seem far, far more real. I believe now that I can bear almost anything, other than what it might do to Adam and me. I don’t want to leave him, with nothing but memories of someone who I’m not. It’s something these next few years, could so easily do. I know that just like every other stage, all I can do is live it and see, but that doesn’t fix the mess in my head. Illness is, 60% reality and 40% imagination, occasionally, that balance changes and imagination is a complete and utter bugger to undo. Once it has planted an idea in our minds, I defy anyone to remove it completely. At best, we might fuzz it up a bit, but squint our eyes just a little, and the picture is still clear enough to see.
Please read my blog from 2 years ago today – 06/11/2013 – Getting it just right
I went to bed last night really looking forward to a comfortable bed that would at last give me the sleep I needed without the worry that should I need to get up during the night, I would be able to return to my flat bed…..
I can’t manage to say all that I wish I could right now but I at least wanted to say thank you so much for sharing this.
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Thank you for sharing Pamela.
This speaks to my biggest worries so truthfully. I have been diagnosed with MS for 12 years and over the last year I have seen my ability and cognition deteriorate. More and more I worry about how my husband and I will be able to manage. I’m too pigheaded and emotional to deal with having a parent again at this stage, and he is too logical to NOT tell me or do what he KNOWS I need. Thank you.
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MY DAUGHTER WAS AN UN -PLANNED AND NOT WANTED PREGNANCY. TODAY, I CHERISH HER MORE THAN LIFE ITSELF.