A wake-up call

I found myself hanging off the back of the bedroom door. Something inside me was screaming, it was one of those moments where everything just suddenly felt too much and I needed to silently scream. I was just stood there with both hands grasped tightly to my dressing gown, with it taking as much of my weight as I dared to set free. All I wanted was to stay where I was my face buried in the soft velvet of my dressing gown, letting that tension escape. I suddenly realised that where I was, was just a little stupid. What if Adam wanted something from the bedroom, half hanging off the door wasn’t exactly a safe place to be, or one that I would be able to explain with ease, or without feeling rather stupid.

The day had started out without issue. I had written my blog, sent out all my tweets and spoken to Jake. Nothing unusual and nothing there to wind me up or steal my energy, a day like any other. I decided to spend my free time trying to find some new sites. Ones that actually had something to say to me, rather than the millions of sites which talk solely to those with Relapse Remitting MS. Read most sites and their truth is that we are all the same, going through a variation of the same thing. That is the first and biggest lie that they all tell. Have any of the three forms that start with the word Progressive, and you are on a totally different journey. To my total surprise, I found one. One with a twist which after my writing how I hate all that Adam has to go through because of my health, was actually fitting as it was written by a carer. It was so well written that I was blown away by it, as it painted perfectly the worst side of what a caregiver reality really is. I had been only able to imagine it before and what I read surprised me as my imagination hadn’t done that bad a job. Donna Steigleder husband is at a later stage of the disease than I am so it was also a picture of my future as well as Adams. Her post was so well written that I forgave her for missing out PRMS, there are so few off us that we are frequently forgotten, especially by the researchers, which explains why there are no treatments for us either.

In so many ways, I both needed and didn’t need to read her words. It hard for me to find the words as to how it feels to read your own future, well parts of it. Clearly there will be differences, but there will be a huge amount that we will share. I’m not stupid, I knew that much of what I read was ahead of us, including Adam feeling as desperate as Donna clearly does at times. Out of our two lives, it is still his that I fear for the most. I am sure that Donna didn’t hand that post to him to read when she felt like that. Or sat down and talked it all through with him, her clearly caring nature tells me that. I don’t want Adam to ever feel that he has to hide all that anger, remorse, pain, guilt, fear and most of all that feeling that somehow he might be failing both of us. Right now I am at the tail end of the scale of MS, somewhere in the later stages of stage 8. Stage 9 is still a way off, I don’t expect to be mainly bedbound anytime soon, but a bad flare could change that tomorrow. Having said that is spending 13 hours a day, partially bed bound? It’s a definition I find hard to work out, as to me you are either bed bound or not, how can you be mainly bedbound? To me, the stages are somewhat unbalanced, stage 8 is met once your life is substantially changed and you are using a wheelchair either full or part time. Seven stages to that point and only two to take you to death, to me, it doesn’t quite add up. I am at the point where yes Adam has to pick up and do the things I can no longer, but his actual caring for my needs is still very limited. As long as my health stays at this level, there is a normality to life that still remains. But I don’t think that either of us are quite prepared for just how much our lives will change as time goes on. It doesn’t matter how well you research your condition, how much you both read and talk, no one knows exactly how you will manage until the point that it actually happens.

I think reading Donna’s post yesterday was a little of a wake-up call. I have spent a lot of my time in the last few years kidding myself that life is going to stay just as it is for many years to come. I admitted a while ago that I had realised that my health had changed more than I thought, or maybe noticed is a better word. I suspect that we all sweep along through life believing nothing has changed. Life has its stage post wake-up points, otherwise know as birthdays. There are no wake-up points when it comes to our health. Yes when I started using my wheelchair, but that was 10 years ago, as I said, how can I still be stuck in stage 8? I know that the mitoxantrone treatment turned back the clock dramatically, but I was never able to step out of my chair. The milestones are spaced so far apart that it is easy to kid yourself that you are doing well. I have been kidding myself that I was fine, that I wasn’t going to fail anytime soon, I think I need to reassess that thought. I’m not saying that life will change tomorrow, but I have to start preparing myself for the fact that it will, something I haven’t been doing. Adam may have been, but if he has he has been doing it alone.

I read yesterday several posts by different people, but the one I have mentioned was the only one that hit me between the eyes and left me reeling. Sometimes things appear for a reason a that time, a reason that we don’t see but feel. Emotionally, it was a kick in the teeth, as I had to say by the end of it, that it was a flag post waving in front of me. A warning that time is passing, my body is failing and the future is getting closer. None of that can I change, but I have to for both of us start to prepare myself for it, just as I prepared for the stages that have brought us this far. If you are mentally prepared for what can’t be changed, when it happens, well you keep going, rather than being stopped dead in the water. I knew and had worked on the possibility of losing the use of one of my hands. When it actually happened, I got dressed and went to work, rather than sitting about feeling like the world had ended. I knew the day might come that I might be housebound, I had worked towards that possibility and changed the way I worked, so I could work from home. Every step worked because I was prepared. Now I have reached the point where I have to face the next stage. I have to work on getting my mind around not being able to do even what I do today. I have to prepare for both stage 9 and stage 10. I have to start seeing it as real, not some distant possibility.

Last night when I headed to bed and stopped at the door, was because inside I was hurting. I was fighting so hard with myself over the fact that reality has been knocking on my door loudly in the last few months and I was waking up to the fact that I can’t ignore it. Donna’s post was the final kick I needed. My body and my life had been dropping clues for months, but I was too stubborn to listen to any of them. Being pigheaded is a wonderful tool to have when you are living with a body that is destroying itself. It can really work for you. Sometimes though it works against you unless you are lucky enough to be woken up to that fact, well it is equally destructive. Thank you, Donna.

Please read my blog from 2 years ago – 28/07/2013 – What next? The web? 

For the past 3 or four days I have been plagued once again by edema, I had been expecting to flare in throughout the really hot weather, but there was no sign of it, so what made is appear now, well 

Finding our balance

It was clear yesterday that Adam had been playing catch up with my blog. I have for a long time worked on a safe theory of not telling Adam about things when they happen. If I do, he goes into a panic mode and spends the next hours jumping at every tiny flinch or twitch. If I don’t, then he reads about it least 24 hours later or at least a point far enough from the event for him to see that I am not about to roll over and die and that no real damage has been done. From nowhere last night, he started questioning me about the blank that appeared in my brain when talking to Jake last Tuesday. Out of all the things I had written about in the past week, this was the event he had pickup on and was clearly still playing on his mind, no matter how far past that point in time that we had travelled. I guess we all have things that worry us and to be honest, I had totally forgotten about it until he mentioned it. I had like all the other odd things in my life, just chalked it up as the first. That doesn’t mean I am expecting it to happen again, just like my leg going on Saturday, it started as a first long ago, now it’s a concern.

When you live with a list of serious conditions, the odds on your body doing something to you that a healthy person would find odd in just a single day, is high. I am so used to finding myself wondering either what was that, why did it do that, or trying to remember if I have felt that before. My body is a mass of odd. If it wasn’t I think I would be stunned, I actually can’t remember what it is like to live in a normal body, rather dull I would think. Joking aside, my body really is a mass of odd. I don’t think I could find an area that hasn’t produced a strange feeling, a peculiar sensation or an actual pain from an ache upwards. A muscle that hasn’t felt a spasm, a twitch or weakness beyond a kitten. Or a nerve that hasn’t learnt to fire off messages that are nothing but complete lies. Maybe, yes, I am complacent and dismissive about it, but who wouldn’t be. Then there are occasions where something is so marked, so outstanding, that I can’t help but not just chalk it up as something new, but I do find myself afterwards just a little concerned. I admit that is the case with last Tuesday. Adams mentioning it was expected, I knew that just like I was at the time, once read he would know it was beyond anything that normally happens and would worry. We had one of those odd conversations, which are probably universal with couples when one has a chronic condition. Adam clearly wanted me to know he had read it, his tone of voice and the way it began with a long “So”, said he wasn’t really happy I hadn’t told him that day. I spoke in a bright, but matter of fact way, putting in the side note of ‘don’t be silly, it was something and nothing, not worth talking about.’ But I also echoed his concern, just to show that I understood how he felt. Our words didn’t matter at all, it was all in our body language and all in your voices. Both of us making our point and both of us equally saying this is something to be noted and not ignored.

It can be hard sometimes being chronically ill, not because of what it does to us, but because we know that in many ways it is our partner that takes the brunt of it. I don’t deliberately hide things from him, writing this should be evidence enough. I would have to be totally nuts if I ever thought that he wouldn’t read it. I don’t tell him everything at the time, partly as I want him to see that I am fine as I said, but also because if we talked about it all the time, it would become oppressive and take over both our lives in a way that I couldn’t stand. Being ill all the time is draining. We have so little time together, that the last thing I want to do is sit there talking about nothing other than the very thing that keeps us apart. I can’t hide everything from him, any more than I would want to, that would be totally disrespectful, but I do want to hide enough that we can have some semblance of normality. The time we have together can never be what either of us would truly call normal for us. My health stole 90% of our normality, but what is left is precious and means the world to me.

Just as much as Adam keeps telling me, that it is his job to look after me, I equally have a role to play, to protect him from unrequired worry. I think ever single person with chronic illness wants to do that. We can’t stop our partners, carers or families from worrying, even if we never let them see a single thing that happened for a whole month, they would still worry through every single day of it. Humans are like that. We also go out of our way to protect those we love and I can’t help being human. I hate what my health has done to me, I hate even more what it has done to Adam. It’s my health, my body and my problem, it just doesn’t feel fair that it can reach out and tear him apart as well. The worse my health is getting and more it feels as though I am hurtling towards a cliff, the more I hate it. I hate the facts and I hate the possibilities even more. I might be a good actress these days, but no matter how much I act, I can’t act well enough to hide it from myself. When you have been with someone for 17 years, trust me if you can’t hide it from yourself, you probably can’t hide it from them.

My health is a scary thing. It’s scary to me and it’s scary to Adam. If I could find a way of changing that, I would give up anything I can think of. It’s not fair, it’s just so unfair that anyone other than I should feel anything about my health other than me. My prognosis isn’t good, our prognosis still seems bright and if we both hold onto that, well after everything is said and done, it is something worth holding on to.

Please read my post from two years ago – 26/07/2013 – A simple thing called happiness 

I have been told over and over throughout my life that I set myself up for people to turn on me, it always comes out of the blue and for what I see no reason at all. I have also been told just how I do it, but does that stop me from a belief in the blanket truth and…

Right or wrong

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………..