Care-Fully sharing

I am beginning to wonder if the day will ever come when someone can go to their doctor and tell them there is something wrong and will actually receive a full diagnosis within a few days. Just this morning I heard from yet another person who husband has been having tests done for over two years and still doesn’t know what is wrong with him, I feel so sorry for them as there is little good that I can say, especially when it took me nearly 20 years to get my diagnosis. I do often wonder if there really are such a huge list of different conditions, as when you look just at symptoms lists, apart from one or two symptoms peculiar to one condition, we share everything else. I can’t help wondering it more and more when I speak with other people who have a totally different condition to me, but we personally share exactly the same issues in life, could it be that we are just variations on a theme rather than totally separate conditions? I changed what I was doing on Twitter within weeks of starting when I realised how much we all had in common, I might have PRMS but I totally understood what was happening to another person who had Parkinson’s or Dysautonomia, I started to write about chronic illness instead of MS. Three years on and the similarities just seem to keep growing, from diagnosis right through to the far more personal issues. Whether we are one family or branches of the same tree or not, I honestly think there are organisations out there who could change many more lives if they stopped focusing just on one niche sector and that is the charities and support groups. There are thousands of small charities who are struggling these days due to lack of funding and lack of facilities, if they were to merge or at least start sharing what they lack, I think they too would find the benefits of supporting each other. I don’t know where it comes from, but I have always had this feeling that people are being let down simply because of a few who see the world through a narrow lens, joining the ranks of the chronically ill has actually reinforced my views.

Last night when I stood up and started to head to bed, I was suddenly aware that once again I was in pain right around the back of me as well as the front. My diaphragm had been in spasm for most of the day, but somehow when I was sat on the settee, I was only aware of the pain around the front of me. Sitting there as always had made my breathing difficult and I guess I had been so conscious of that, that I simply hadn’t noticed the fact that my muscles were so cramped and so tight that I once again there was pressure over my kidneys. What I have been noticing though is that my output of fluid is highly changeable lately, I am careful about what I drink because of the problems that I have with my bowels so I always drink about the same every day, around two and a half liters of liquid, plus whatever else is in my food. In the last few weeks, I had noticed that I seem to often go days just passing dribbles, followed by a couple of days when the rest suddenly appears. I had been putting it down to the pressure being put on my bladder, but I am now starting to wonder as yesterday was another dribble day followed by kidney pain, if there is now a knock on effect on my kidneys too. Right now it is a chicken and egg situation, I don’t know if the pain causes the lack of output, or the lack of output, causes the pain, but something is going on. Just now was the first time I have passed more than a tablespoonful for 18hours, almost all that was missing is now accounted for, but it doesn’t add up to being OK.

I had to think carefully before adding what I am about to write, as I don’t want to make a false accusation but the more I have thought about it, the more I feel it has to be said as it is an odd thing that all of us who are ill might need to be slightly more guarded about in this world of social media. A couple of months ago I came across someone through twitter who at first I thought was genuinely in need of a little support to help them through what appeared to be a difficult time. At first I was happy to help, but as the days went on the questions slowly changed and became what I can only describe as strange. They were asking details, details that had a familiar ring to them, but I couldn’t put my finger on, then suddenly it clicked, they were some of the questions that appeared on the forms you need to fill in to get sickness benefits in this country. I didn’t want to believe it, but I had a growing certainty that they were trying to milk me for the right things to answer to ensure they would receive the money they were looking for, so I set a trap, I gave a few false answers, things that were totally wrong and they took them in, in exactly the same way as my previous comments and answers, totally agreeing and saying how difficult it made their lives. So OK I can’t be 100% sure that was what was happening but it didn’t only disgust me, it really did worry me, as I had this sudden horrid image of scammers reading my blog with no other reason than fraud. The more I thought about it, the more I also realised that here is also the perfect material for the hypochondriac & those who want to appear ill to friends and families. The more I thought about it, the more I realised that there were probably millions of people worldwide reading blogs just like mine, not to learn or to understand what was happening to them or those they loved, but for the sole purpose of fraud and it made me feel sick. I know that medical sites do go into a lot more detail than they used to, but if you are looking for that one extra twist, those small details that might make you look that touch more convincing, well it is here and in millions of other blogs written about illness, a new form of plagiarism, the plagiarism of health.

I know it’s not my problem and that spending even another minute thinking about it won’t change a thing. But when you have lived your life as honestly and openly as you can, to realise that that honesty could be used for the total opposite, well it hurts, not that that would matter to people like that.

Read my blog from 2 years ago today – 10/05/13 – Responding to disability

Yesterday afternoon I was thinking about making another phone call to the company that are supposed to be fitting the mattress elevator, it was 3 days since I last called, the promised phone call hadn’t emerged. I was doing my usual, the I’ll just do this first, from an appearing list of things I didn’t know I needed to do at all. Then someone leaned on my doorbell as though trying…….