We’re our own experts

Yesterday was our wedding anniversary and therefore also Adams birthday, I don’t think that I have ever started two posts with the same opening line before, but as it was true two years ago, it is true today. Since our finances changed dramatically once I was no longer working, it hasn’t been a day of great celebration or presents any more than we respect the tradition on my birthday or Christmas, it has become more a day of good memories for me at least. I find it hard to believe that we have now been married 16 years, mind you not as hard as my family who refused to come as firstly it clashed with my nieces 21sts and secondly because they thought I was totally mad for marrying someone so much younger than me. I loved their double standards then and I still love it, as my sisters husband is 17 years older than her and that wasn’t a problem, so where is the difference in my marrying someone 17 years younger than me? Yet here we are married for 16 years to a wonderful man and in the city I have lived in longer than anywhere else in my entire life and more than happy to say I love both.

My expectations for yesterday were proved wrong in my fear for the intensity of the pain like I had the day before repeating itself. Luckily it didn’t really get any worse as the day went on, other than a slight peak in the late evening, but that happens every day. I still spent my entire day not too sure how to sit or which way to lean as they were all uncomfortable and often painful, but my boosters pills were enough to hold it at a level that I found bearable. Tiredness definitely plays a huge role in my ability to actually deal with anything, something I think anyone with a chronic condition will agree with, but it’s logical really as even if you have the flu, you feel worse at night. By the evening, I was tired, so as always my pain levels rose but nowhere close to where they had been the day before. It wasn’t until I went to bed that I had any problems breathing, something that is now becoming a normal part of my life, but as it isn’t severe and I normally slip into sleep quite easily, I now just see it as my normal, but I have no doubt that I was lucky to get away without triggering a ground hog day.

Looking back at yesterday it should have been the total opposite as there were so many interruptions with people coming. On Thursday afternoon when Adam sat down on the settee, the spring that was supposed to have been replaced when they were recovered suddenly went again. Adam called them straight away and they were here just after 8am to collect it and repair it for us. Both of us thought it would be gone for a couple of days, as they weren’t exactly quick in returning it last time, but at 11 the doorbell rang and there was the settee back repaired and returned to its place in our living room. Even though they did all the heavy work, I still had to do a lot of wondering around moving ornaments and so on, I know our home is small, but it is amazing how far you can walk but actually go nowhere. We had moved everything that was in their way into the kitchen so they could the settee out without breaking anything, Adam had wanted to move the small settee over into the space left by the main one, but I had a hope that we might be lucky and get it back on the same day, so I was at least saved from having to move even more stuff, just to move it back as well. Their visit was followed closely by the gas man who wanted to read the meter and then the postman, I seemed to spend the entire morning just getting up and down of my chair and waddling around the hallway and living room.

It was for that reason if not any other, I was really expecting the pain to start rising and to just keep rising, but it just didn’t happen that way. Yes, I was uncomfortable the whole morning, but I had taken a booster early on as I didn’t want to find myself suddenly unable to move when there were complete strangers around. There were odd sharp pains when I tried to twist myself to reach something, clearly when my diaphragm is locked like this my flexibility is limited, but the gradual rise into pain that makes even breathing too painful, didn’t arrive as soon as I had feared. It wasn’t until this morning that I really started to think about all of this in depth, I can’t help wondering if my activity of yesterday morning, which did have the obvious side effect of both my leg and arm muscles becoming fatigued and making me somewhat tireder than normal, might actually have helped to stop more muscles joining into the lock up. To me, that actually makes some sense, but like everything in my life, it is a constant catch 22.

I have always held firmly to the belief that if you don’t use something, you will lose it, so I have always done whatever I can, not allowing pain and fatigue to stop me until it reached a point where I had no choice. Yesterday I was forced into doing the opposite of what I have been doing in the last few years. I have always taken pain as a sign that I have to stop, well that is usually what pain means and even though I know I wouldn’t have managed what I did yesterday without taking a booster before I really had to wonder around the most, or I would have crumpled much sooner, did working past that point actually have a positive effect or was it just coincidence. It is a really hard one to know which is correct or what how even to test it. On one hand, I don’t want to start taking more Morphine as a way of preventing what isn’t there, but on the other, I know without a doubt, I wouldn’t have been able to get through yesterday morning if I hadn’t. Pushing myself without it has only one result and it doesn’t take any more testing as I have done that one enough times to know what happens, but if pushing it could reduce the speed that total lock down takes to occur, wouldn’t it be worth it? As I said a catch 22. Sometimes I hate my life, not for the things that everyone can see, but because of situations just like this, possibilities and options, which may or may not work and never an easy answer.

If we had the perfect medical service, something that I doubt actually exists anywhere, we would have a dedicated condition expert, who we could talk to at any time of day or night when we have a problem. Someone who would know the answers to all these stupid questions, that charge around in our heads destroying our lives with the constant possibility of us doing exactly the wrong thing, because we think it is the right one. They would know the answers because they would be talking to people like us every minute of every day, gathering all the little bits of information and the results of all the testing we do and right now tell no one. They would be able to build a true database of answers to every question that I and millions must ask daily, from the small and irritating to the desperately important and “you should be in hospital” ones. I am sure if truth is known, that almost every single one of us has actually made our health worse at least once and more importantly, that some have actually died out of trying to work out what to do, just because there is no one to ask and they simply got it wrong.

Right now you really can’t win, we don’t want to talk to our doctors as all we hear is how they are snowed under with patients and anyway, all too often it isn’t really a question for a GP and there isn’t a blue moon chance of talking to your Neuro. Yes, I have an “MS Nurse”, I don’t know if you have tried to speak to yours, but to date, every time I have called they are not there and those who answer the phone won’t talk to you, as your not on their list. So you land up trawling the web and trust me that is no better than trying to work it out for yourself. When it comes down to it, we are forced into being our own experts and all the problems that come with that. So I guess it is back to trying to work it out for myself.

Read my blog from 2 years ago today – 25/04/13 – The years are adding up

Yesterday was our wedding anniversary and therefore also Adams birthday, I can admit this now as well it’s a fact of history. On Saturday afternoon when Adam was working I was woken by the phone, not something that usually leaves me in the best mood or is renowned to get a positive reaction to the caller. For once though I was relieved to find that it was……

Being bad

I am desperately waiting for my meds to take hold as I have two distinct areas of pain, for once one of them is totally my own fault. For the last few weeks I have been asking Adam to fix two of our curtain, one in the kitchen and the other in the bathroom, both were hanging wrong and just weren’t doing their winter job, keeping the cold out. I had high hopes all last week, with him being off, that they would be fixed and it would be over and done with, but they weren’t, despite my almost daily gentle reminders, so yesterday I fixed them. No I didn’t go climbing up ladders, it might have been easier if I had in the bathroom, but I managed both without too much danger. In the kitchen it was just a case of climbing on my stool and up onto the counter, a totally solid flat surface, in the kitchen I had to stand on the toilet seat lid, where I admit I didn’t feel that safe until I managed to put one knee on the wide window ledge, both curtains were fixed in about 10 minutes, less time than it took me to shift all the stuff now piled in the hall cupboard, so I could find and put away again the tools I needed, or the time I spent wondering around to just get it done. I was fine afterwards, I actually felt really pleased with myself as it has been years since I have done anything like it, sometimes we have to do something stupid, just to give ourselves that little boost and stop ourselves feeling totally useless. When I was finished, I felt just as I hoped I might, fine, which actually really shoked me and I was fine until I got up from my nap, it was then that my legs started to tell me exactly what they thought of my act of stubbornness, as that is what it was, stubbornness that I was going to get the job done, even if Adam won’t do it.

Anyone could see that I was walking worse than normal, just that bit more hesitant and that I was taking just that bit more care about every move, no matter how determiner I was to not show any sign of what I had been up to. Adam did mention it later in the evening and was quite happy to answer his own question, by attributing it to our day out on Thursday, I said nothing other than my legs were sore. Despite the fact that he has been in and out of both rooms several time, not once has he mentioned that the curtains have been fixed. I was tempted not to even mention it in here, but I know already that he doesn’t read it every day, just does catch ups ever so often, unless he thinks something is wrong that I am not talking about, so the wait is on, how long before he sees it has been done? I know that he has to be the most unobservant of all the men I have known, as I have bought and added to our home so many things that haven’t been noticed for weeks, even months in the case of some things, that holding my breath would be a dangerous thing to do. I remember him saying that if it wasn’t in front of him, he didn’t notice things, something I find hard to understand as I daily spend time looking round ever room and at almost everything in it, but I had a feeling that it worse than that and I tested it once, to be proved right. I bought a silver coloured elephant made of titanium and standing about two and half inches tall and placed it just below the TV screen on the stand and waited. Two days later I couldn’t take it any longer and pointed it out to him, he hadn’t noticed at all, proving that he truly doesn’t see things, despite still claiming to being an observant person who would do perfectly if asked to pick someone from a line up.

When I woke this morning I was so pleased to have the elevator there under my mattress to give me a boost out of bed. I had pain all around my pelvic and thighs and buttocks, the area that had rediscovered what it was made for, climbing. Honestly, I have had less pain from spending a day hiking in the Scottish countryside, than I have had so far from standing on a work surface and a toilet seat, not exactly mountains. But I did it, me, no one else so I just have to get on with it. The other pain I mentioned, well that isn’t my fault as I have had this one before and it made as little sense as it does to day, as we all know where our muscles are and how they work in groups, this just doesn’t fit. As always it started with my diaphragm and then down on step level to my stomach, those I am used to, the odd bit has to date only ever happened when I was lying down and made no sense then either. It is as though someone has drawn a line from my left ear, straight down as you would using a plumb weight. The pain starts just below my collar bone and travels straight down to the inner end of the rib that the line goes through. The band of pain is about an inch to two inches wide and there is nothing that I can think of that could either cause it, or even more confusingly account for pain that isn’t in line with anything other than an invisible line I can draw through it. I have felt it before on both sides whilst in bed in the past, but this is the first time I have ever had it while up and about. I have noticed that slowly over the last few months those things that were confined to when I was lying down are now appearing during the day. I can’t help feeling that the truth is that they were always there during the day, but due to the distractions of life and different position, I just wasn’t noticing them, lying down left me free to be aware, to listen to their complaints. That of course means that they are as I thought from the night pains, getting worse, now bad enough for me to be more than aware of their presence beyond the discomfort that I have lived with for years, it still doesn’t tell me what this strange horizontal line is though.

There is an unmissable pattern in my life that I find somewhat disheartening and that is almost ever pain and many of the symptoms I have ever had, started as something confined to evenings and night time. Others have also told me that it was at evening they too first noticed things like their dexterity going, or their balance was off, as though we needed to be tired before their systems broke down. Pain in our arms and legs were and are still worse at night and the more tired our bodies get, the more things we find are wrong. It was at night I first became aware of breathing problems, a story that unfolds through out this blog, as do many others, but it is still hard to accept that those miserable minutes of lying in bed, in pain in places that are still only night time, are my future. How long then is there before I wake feeling as rotten as I do at night just now and what then will my night time be?


Please read my blog from 2 years ago today – 11/11/12 – Finding belief inside yourself

I am starting to really feel the house being colder but I am still holding off the idea of putting the heating on. I have always been aware of the amount of electric and gas we use but it is worrying me now more than any other cost that we have to cover now that I am not working, I normally love winter and…..