I found myself in the middle of the night just sitting on the edge of my bed, I had woken up for no reason I could find and for equally no reason I decided I needed to sit up, I was sat there still wearing my earplugs and sleep mask with my head down as though I was looking at the floor. I wasn’t in pain, well no worse than normal and I didn’t need to go to the loo and I was still tired, I just didn’t want to lie down, which made no sense. I think I sat there for a couple of minutes before deciding it was rather silly and I took my mask off and almost automatically headed for the bathroom, just in case it was just my bladder not giving me the correct or recognisable signals. Just in case seems to be one of the ways you learn to live with a body like mine, you can never be sure of anything or accept anything on the face value but this time I had made a wasted journey, annoying, yes, but better than wetting myself. I knew I was tired, but I equally knew that I wasn’t going to go back to sleep at that moment so I sat in the kitchen for a while and smoked a couple of cigarettes.

Earlier I had made the decision because I had put it in yesterday’s blog that I had better tell Adam about the lump on the back of my head, he instantly went into his doctor mode, asking me what were rather stupid questions, but I have learnt to answer them all, as it is the only way to stop him from turning nothing into a disaster. No I hadn’t fallen over, nor had I banged my head on the headboard of the bed, nor had I got up in the middle of the night without waking, fallen over and knocking myself unconscious before going back to bed still all the while asleep. Sitting in the kitchen running it all through my head, it all seemed rather funny and cute, just as the fact that I had a sore left arm which I had already told him that I was sure was an injury rather than an PRMS symptom, although I didn’t know what or how, suddenly in his head it had measured up as my having a heart attack. This is, unfortunately, one of the side effects of having a condition like mine, somehow we find ourselves with partners who are paranoid about every single little thing that happens with your health. No matter how much I love him, and I do, he is so scared about every little thing, from what has, to what might and what never will. Today is shopping day, late this week I know but hey we all slip up sometime, but he will be home at lunch time regardless of the fact the the weather is terrible, the heavy bags I can deal with are now lying on the hall floor so he will get soaked today just in case I might fall over them, my sight isn’t good but I am not blind. It’s the same with everything, the slightest sign that I am not as perfect as I can be, well it is turned into something that might kill me any second, if I didn’t love him, he would have driven me up the wall by now, I know all to well he cares and is just trying to look after me. At least last night I managed to leave the bedroom without waking him, as all to often my efforts to avoid the creaking floor boards that all old houses have isn’t at all easy, especially when you are inclined to the odd stagger, the tiniest squeak usually find him standing in the kitchen with me, just in case he is needed, what he needs is a full nights sleep without keeping one eat open and listening for me all the time.

I had sat there for far longer than my cigarette took to smoke and when I tiptoed back across the hall I stopped for a second to listen to see if I could hear him snoring in the living room, it wasn’t until I had undressed and I was getting back into bed that I realised that I was still wearing my earplugs, so OK the memory isn’t that sharp at that time of day. Adam had fixed the bed for me earlier, it had taken minutes and turned out to be exactly what both of us thought it was, the two sides of the mattress elevator had split apart, it was just a brief job of slotting them back together, as it turned out I should have asked him to do it the night before. I think it had been separating for a couple of weeks as lying on it correctly was at first odd, I had become used to sleeping on a sideways slope, it just shows you, you can adapt without even knowing you are. Even on an incredibly comfortable bed, I didn’t go back to sleep straight away, partly because my head was hurting again but mainly because I couldn’t stop thinking over and over all the time that Adam has spent just worrying about me in the last 14years, time he shouldn’t have been worrying about anything. He may not be officially my carer, but he truly is, even though it is mostly in his head, whenever I try to get him to stop and to reassure him that I am fine, he just says “it is his job as my husband to worry about me”, it is also his job as a human to live and as my husband to be happy.

Why is it that it is always in the small hours that our brains click onto things that could easily be thought through during the day, but they believe that 1 am is a much better time. Chronic illness is a multi-edged sword and it isn’t just me who is being slowly destroyed, it is also my beautiful husband. As much as I would love to have my health back, I would rather see him happy and free of constant worry than my being well again as it wouldn’t change anything, after all that has happened he would still be as he is now, just waiting for something to happen. I may have all the physical pain, but I honestly think that he like many caring partners is carrying enough mental pain to equal it. If he isn’t worrying about my health it is about our financial situation and what will happen in the future as my health gets worse and this house becomes more and more unsuitable, he mentally beats himself up about it constantly even though there is absolutely nothing that can be done about any of it. People forget all to often that when someone’s partner becomes seriously ill, they to become ill in so many ways, none of us were born mentally strong enough to deal with all that happens in this situation and no one teaches us. We support each other as much as we can, but it is all to often the blind leading the blind and undoubtable, because I know it is true for me, when I am struggling I don’t always listen as much as I should and I am sure when he is struggling it will be the same thing the other way round.

For some things like support groups help, or counselling, but he has tried both and found neither of any assistance to him at all, so we muddle on doing what we believe is right and what we think might just make it that bit better for the other, but are either of us right.

Please read my blog from 2 years ago today – 08/01/13 – The monster ‘Can’t’

It is now 6 years since I last left the house by myself, my final day in the office when it all went so wrong that they gave me permission to work from home, I don’t think at the time that I truly realised what an impact that day would have on my life………..