Everything is upside down again this morning. An internet that has gone nuts again and Adam at home, but awake, rather than snoring on the settee. This is not a normal weekend in any way that I can think of. Mind you, this weekend is also Adams 38th birthday and our 17th wedding anniversary. I’m not too sure how happy Adam will be about me telling you that, I do mean his age, not our anniversary. He is one of those odd people who doesn’t like his age being really known, especially as the years tick by. I have to admit, that one of the things I have loved about being with him, has been watching him mature, and getting him to admit that he now understands, that things I said years ago. I was 38 when we got married, we had been together for about a year when we tied the knot. Last week I pinned him down on one of those things I had said, and I knew the instant that I asked him, simply from the look on his face, that he now more than understood.

I quite honestly didn’t have the slightest idea of his age the night we met in a nightclub. Even in the dim lights, I knew he was younger than me, but by how much, I didn’t have a clue. For some reason that at the time I didn’t understand, I always seemed to attract people younger than me, I don’t think I had a single friend who wasn’t at least 10 years my junior. I know I didn’t look or act my age, but where the magnet was located, I wasn’t sure. Mind you, I was terrible at working out how old people were, but I had made a stab at it and had incorrectly put Adam about ten years younger than me. It wasn’t until we were out on the street and I could see him clearly, that I questioned him. To my horror, he was 17 years younger than me. At that second, I started what was a three-hour conversation as to why, we, were not going to happen. The age gap was so wrong to me, that I was refusing to have anything to do with him, but he argued and argued about it. I eventually gave in and agreed to meet him the next day, but just to talk. It was this that I pinned him down on the other day. I asked if he could now understand the problem that I had with his age when we met. As I said, the smile told me, everything. I asked him to imagine himself single and with a twenty-year-old female badgering him to go out with her, just how he would feel. He was both mentally and physically squirming and admitted fully that he would feel like a some sort of “child snatcher”. The whole situation was something he felt more than uncomfortable with, as to him, a 20-year-old girl would now be just a child. I told him he was only close, I had felt like a “cradle snatcher”, after all, I had a son, just a year younger than him.

Clearly, I did get past it, but it was incredibly difficult for the first few weeks, then slowly, the age thing just vanished totally, we were a couple. It is totally true that love is blind, in our case in a good way, as once I loved him, he was my partner, not anyone of any age, just the man I loved and who also loved me. 17 years on, I think we have more than proved our doubters, and trust me we had many, were wrong. If there is one thing that will test a relationship to its breaking point and beyond, it’s chronic illness. It doesn’t matter what your age is, it is going to pull your relationship into places that most never go. I don’t think there is a greater test that I can think of. It doesn’t matter if you have been together three years, as we were when I was first diagnosed, or twenty years, just that diagnosis, has broken many couples.

A diagnosis of any chronic condition means a total belief in your marriage vows. It’s easy to say in sickness and in health, it’s far harder to live it. For some reason, it is harder knowing your future, than it is to head into a life of mystery like most do. True, I don’t know for sure what will happen today, far less tomorrow, but a diagnosis means life for both of you, isn’t going to be the great fun adventure life is meant to be. That picture of having to care for someone, of having someone who’s entire life, you, will one day be responsible for 24/7, makes many run. Those who run, I believe, do so because, they can’t face the responsibility, not always as some think, because they didn’t really love them. Staying is a commitment far beyond just love. No, I’m not saying that love doesn’t come into it, of course, it does, but it’s a commitment way beyond years and feelings, it’s a commitment to give up their lives, for ours. That is a huge thing to do for anyone. Yes, I know that is what you could say, that people do every day when they choose to have children. The difference is, children grow up and leave home. Someone who has either a degenerative or terminal condition, do the exact opposite. Which is why I, along with millions of others, had that conversation that went somewhat along the lines of “I would understand if you want to leave”. I might have understood it, but I would have had my heart broken in a way it had only been broken once before.

The few of us who are lucky enough to have that person who will do such a thing, are way beyond lucky, we are totally blessed. Yes, I would have totally understood if Adam had chosen to leave, especially as he was so young at the time. He had an entire lifetime ahead of him, his life was really just starting, but he committed it to me, and at the time, he did it with the same apparent ease, as he has done to anything that I have needed from him. Just as age didn’t matter when it came down to it over us being a couple, age has never been an issue when it has come to him caring for me either. It doesn’t matter if it’s your partner, or your carer, if you have the right person with you, them they are the right person and that is all that matters.


Please read my blog from 2 years ago today – 24/04/2014 – Reverting

15 years ago today, Adam and I got married. I have to say that it doesn’t feel anything like that amount of time has passed, my first marriage only lasted 10 years, but it feels as thought it went on for what felt like ever. They say that when you are happy time fly’s, well I guess I have the proof of that saying, as despite all the things that have gone wrong for us, I still honestly don’t know where these last 15 years has gone. If you have read any of the posts I set links to at the bottom of each post which takes you to the same day two years ago, well you will have read a about how we came to be together and the problems that we faced with adapting to my illness only diagnosed a couple of years after we married, so I am not going to go over all of that again. What I will say though is that I honestly actually love……

It’s done

I didn’t know where I was, or who I was this morning. I sort of got myself through here, then sat at my computer staring blankly at the screen, waiting for it to boot up and wishing I hadn’t left my bed. Based on the past, I thought that today would be the day, that I would wake not feeling like I could dance around the house, but, at least, feeling as though I was alive. Three days, that is my normal recovery time for anything from going to the hospital, to have a visitor, three days at the most. Today is day four and I still feel like I did on day one. Don’t get me wrong, I wouldn’t have changed a single minute of the time I spent with Teressa and John, not one single second, but, my recovery, is clearly getting slower. One more thing to add to my list of things that aren’t quite how they were.

Granted, yesterday I made the dough so that Adam could cook the pancakes, but that took minutes, not the whole day, and it isn’t the sort of job that takes much out of me. The biggest thing that I did was to complete my letter to my Mother, in response to her card. I reread the one that I couldn’t send. The one that screamed and shouted my annoyance and pain in every word. Then wrote one, just as I thought she was expecting from me, one that groveled and kowtowed to her. Trust me, that hurt, as it was the attitude I was brought up to show. I followed that, by writing one, not even close to in between, as it was not that far from the first, but tempered by the second. I showed her the respect that I would for anyone who is in their late eighties, but, I also told her the truth, something she has twisted all her life.On the whole, my letter is very similar to my post about her card, but sticks to just the last two years.

At the grand old age of 55, I have at last stood up to my Mother and told her, that I refuse to play her games. Oddly, I feel nothing. I thought that telling her, would somehow change something, but it’s changed nothing. As I signed it, I realised why. The last two years, without her interfering in my life, always having something to put me down over, have been wonderfully peaceful. I haven’t missed her at all. Yes, I have often thought about her, wondered how she was doing, because she is my Mother, but I haven’t missed her. I was oddly content knowing that she had for some reason, that I didn’t know or understand, once again cut me off. But this time, I didn’t bend over backwards, to find out why. I called my brother and his words although friendly, didn’t match with his actions, they matched, as always, with hers. I chose to live 150 miles away from them for a reason. I don’t know if she will bother to pick up the phone or if this is the end of it. I don’t know if I will receive a letter in return and I don’t care, I kind of like peace.

Even though I wrote that letter. Even though Teressa was here for two days and even though, we had to deal with the phone call for PIP, and we’ve between us made the pancakes. None of it equates in my head for how tired I am. I long for sleep, but I also have a longing for one other thing, it’s what I asked for the other day, I’m still longing to do nothing. That’s something I don’t remember longing for, ever, in my life before, and I don’t even truly know what it is.

There isn’t a symptom, or an effect, that my body can do to me, that I am not aware of. This isn’t any, that I have come across ever in my life before. It’s almost like my brain wants to do nothing, rather than a physical event. It just wants to be allowed to not think, not ponder or even accept input or output of any sort. How you achieve that, I’m not sure. I would have said in the past that sleep would cover such a feeling, but I am sleeping fine. Eleven and a half hours every single night without fail, yet, here I am longing in a way I don’t understand, for nothing, and I want to understand, I want to make sense of it. Ask Adam, there is nothing in this world, that annoys me more, than not understanding something. It drives me mad. I even Googled it, and much to my surprise, I found a website called Nothing. It didn’t help, but it was a distraction for a while, but it’s not the nothing I long for.


Please read my blog from 2 years ago today – 20/02/2014 – Change the image

It finally looks as though there is a chance that those truly unfortunate people who have spent almost the entirety of this year with their homes flooded, might actually be at the beginning of the end to their misery. I count myself lucky that despite having lived all over the country and in all sorts of homes, it is something I have been lucky……







Desperate to keep the balance

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…..