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……

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