When you know

All day yesterday I waited for the pain to either return or to go to the loo as I am sure that is what the pain was about. It is only a guess, but last week for a two or three days in a row, when ever I took my meds I found myself looking at the collection on the counter and was sure something was missing. I kept checking them against the pill strips and nothing was missing, then it hit me, what was missing was the dulcoease, which keeps my stools soft and had to date meant I was no longer in the muddle that lead to the blue glove incident. I can’t be sure but I think I went two days at least without taking one three times a day, when I noticed my mistake I then started taking two three time a day to help sort things out, but I didn’t take my dulcolax until last night as it is now over 7 days since I last went. I used to use a set of trays into which I put my meds for the week and I just had to take those in the section at the right time, but I managed to get into a worse mess with it, than without, mainly due to dexterity. It all became so confusing and such an uncertain system that I stopped it all together and the system I set up to take over, has never failed me until now. Usually what I do is when I finish a strip of meds, before I throw out the empty one, I put a full one in it’s place, I clearly didn’t do that at the end of the strip, I just through it away, then landed up lost.

It is one of the feelings that we all have to get used to as our memory starts playing hide and seek, staring at something and knowing it is wrong, but with totally no notion of what it is that isn’t there, in fact I would say that it is probably the first true way I knew my memory was really going. All of us, even those with perfect minds forget names, or words, or even why they went into a room, I felt all those things were worse than normal, but I couldn’t prove anything. If there is one thing that I have always excelled at it is know what is where and it’s exact position, I can still on my good days navigate the house in the dark and put my hand on exactly what I want, or spot that an ornament has been moves by a millimetre, so knowing something isn’t right without knowing what, is totally alien. Getting a diagnosis or the proof of things of this nature is incredibly hard, even with the diagnosis I had of PRMS, they still didn’t seem keen to test my memory, it actually took 3 visits to my Neurologist, with the standard one year wait between each, to even convince him it needed looking at. A couple of months later I saw this odd woman, who hardly talked and looked at me over the top of her glasses and she showed not the slightest thing on her face, no reactions, no sign of her mood, just the totally still face that ate into you. Her tests lasted about an hour, I think, I do remember they felt they were going on for ever, as she dully read out a list and stories, sometimes asking questions straight away, on others doing another test, then going back for her questions. She showed me picture and I had to tell her what they were and even asked me to draw some of them, while she watched and took notes, ticked boxes and said little. I got no feed back at all, no letter even as they wanted me back in a year to do the same tests all over again, the same test with the same person, then a wait of a month before I got the letter telling me exactly the extent of the damage that had been done to that point. It is odd how getting a letter telling you that you mental abilities are not great and getting worse, actually makes you feel better, but when you know yourself that something is wrong, well having it confirmed reassures you, that you aren’t reading more into it than is needed and that it is all real, not just you building it up from a few none important instances into something that never was.

How I reacted to the news like that my brain really was been eaten alive, was I suppose a little strange to some, I guess that most people actually want to be told there is nothing wrong and to stop worrying about it, but because I have been told that all my adult life until they actually opened their eyes and spotted my PRMS eventually, well I kind of prefer now to be told that it isn’t my imagination, that what I feel or believe is happening, really is. I have spent to many years of my life doubting myself and believing that I was actually quick clearly a wimp, well there was no other explanation as everyone had to be living with it and without problems, so it had to be me. I have come across a scarily large number of people who have been brushed over and sent packing for years, without any explanation at all and I do mean nothing. I have also come across a large number who just don’t want to accept their diagnosis, especially amongst those who are suffering from depression or anxiety, as they can’t see how their mental state can cause them to have physical symptoms, it can and it does. I am quite sure that years ago that anxiety did play it’s part in how I was back then, but the anxiety was being caused because I knew I was ill and no one believed me, my diagnosis changed my life and not all of it badly, as knowing the truth got rid of all my anxiety and stress about myself. Yes I still had life stress, everyone does as we all live in a world designed to drive anyone mad, but I have never looked back since that day and that I suppose it is why I would hate to have any doctor now say to me there is nothing wrong, ever again.

In the last few months my PRMS has heightened, there is no doubt about that, it has been attacking me with more strength and more frequency, than it has for a long time. From the point that it started to attack my lungs, everything else has increased with it, there is no doubt any longer that my progression rate has increased. I didn’t even know that MS could effect my lungs, so when the doctor explained it to me and what was happening, I was a little shocked. In fact until I had my first MS hug, about 3 years ago, I didn’t even know it could effect the intercostal muscles, go to the mainstream sites and in some there is nothing about it, at least no that I ever found, but in others if you dig around there it is. Even once found I didn’t realise just how bad it can be or that it could shut down your lungs completely. I did know that it could affect bowels but again I didn’t realise the amount of pain or the intensity of what it could do, both in the last two years have been just getting worse and worse, despite all their hours of testing, the results are that there is nothing that anyone can do about it, strangely I have come to terms with it. 13 years ago was the first time I was ever told that I had a condition that they could do nothing about, almost everything that has happened since has brought those same words, they can do nothing, after a while you get used to it and I would probably be more shocked if someone said to me, we can fix that!

It doesn’t matter what it is, our reaction to any given situation is shaped totally by our experiences to date. Mine has told me that staying calm and getting on with it, is the only way to deal with anything, it doesn’t matter how bad the pain, or how much you think you might be dying at that second, the truth usually is, your not. I can’t actually remember the last time I did stress in any way about anything that my body has done, yes for the odd second, but never any longer, even yesterday it wasn’t until I saw how white I had gone that I started to think this doesn’t look like my PRMS, that I searched in my head for another reason and with it came a brief minute of stress. Then reality kicked in as I know better than most there is no point in stressing, so relax and if it is your worst case scenario, well life has been good, if it’s not then let it pass and get on with living, I have so much happiness still to live for.


Please read my blog from 2 years ago today – 20/11/12 – Let me sleep

I know already that today is going to be one of those days where the pain levels are going to over ride my every action and thought…