Decaying slowly

I have tried for the past few days not to write about or dwell on the pain that I feel in my legs, it hasn’t gone away but I was trying hard to distract myself in the hope that it’s impact on me would be lessened, it has made no difference at all. I suspect it was a stupid idea but well even the stupidest ideas can have some merit in them and the only way to find out is to try it. Distraction is something that works to a degree but I was trying what might be called a focused distraction, all of it centered on my left leg. I was putting up with all other pain and reacting instantly to anything in my left leg. I have half joked and half seriously requested the removal of my left leg immediately, if you could feel what it puts me through in a day you would see where that idea comes from, it isn’t in anyway a serious statement just a way to, well explain how much I wish I could find relief from it. If the left side of my body, which is always the worst, could be brought down to the level of pain in my right, life would be more than bearable. Another experiment that hasn’t worked. I am great at coming up with ideas that have nothing more than the smallest degree of fact behind them with the hope that I can push it into being a break through. I have to keep trying things, well you never know I might find some answers one day.

On my 50th birthday I received a letter that had incredibly bad timing behind it, I have said before that I am not a birthday person but that didn’t stop that dull feeling of life moving past me on reaching 50. When the mail arrived that day amongst it was a test kit from the NHS for me to be screened for bowel cancer, I put it in the bin, I wouldn’t have done that if it had arrived on any other day but as I said it was bad timing. A couple of days ago I received another letter from the NHS wanting me to attend a breast screening clinic, Adam was here and I reacted verbally to it arrival by saying as I chucked it into my to do pile, “It appears I am not allowed to sit here and slowly decay”. I thought about those words later, not at the time as well you never do, do you. I realised that in someways I wish that was possible, to just go back to the start of this year and not make that phone call that brought the NHS back into my life. For the first 5yrs of being housebound I had kept them all out of my life, I saw no doctors, attended no clinics and simply got on with existing the way I found best. Suddenly there are people prodding and poking, scanning and testing, talking and suggesting, and I feel I have lost that contented corner where I was slowly decaying happily.

I know all these things are meant to be making my life better and keeping my health on the up side, but it all feels invasive and controlling. Even worse than that it is all so slow and disruptive, I still have another 3 weeks to wait for the appointment to return to the hospital for them to tell me what they are going to do about my gallstones and what they think is behind the rest of it. There are times when I wish I could shut them all back out and get them to actually work together, getting everything ordered and arranged and I would then have one more day out of the house and it would be done and over, but no it is all in bit, all disturbing and feels so oppressive. There is a strangely comforting thought of decaying slowly in peace, sat here in my corner unaware of the reasons and length of time. Although I invited them all in, the medical profession do seem to have a way of taking over, of rearranging your life to suit them and without consideration of what they are doing to their patient. I am living with a what next feeling, a feeling that any minute now they are going to throw some huge weight onto me and then as in the past run me over, before vanishing again. I know I am looking for the impossible but I often do, I almost wish they would take me in for 48hrs and do everything they want and get it all over and done with, then give me my life back to be truly mine.

Safety Net

It is over 30yrs since I started having symptoms of MS and I was dismissed by the doctors and family alike as making it up for some strange reason that I never worked out why I would have been. What stuns me more than anything I hear from others is that this type of treatment is still happening, and there are still people out there who know they are ill, but no one else does. I remember quite clearly the pain that I felt every time I went to see a doctor and I was sent away with that look that I saw again and again, the look of ‘she is wasting my time, there is nothing wrong here’. I know there are some people who do fain illness to get attention, but when someone is clearly in pain and returns every few months with the exact same symptoms and the the exact same plea for help, surly that tells a doctor there is really something wrong. The Doctors did see me for months and I would suddenly appear again and again I had the same problems, it wasn’t like I was there every few days or that I kept changing what was wrong with me, so why I got treated in that manner, I have never understood, other than I can’t help wondering if one doctor wrote it on my file and it triggered all the others.

I was lucky I moved around the country a lot and my real stroke of luck was when I moved to Glasgow as my notes for the 3rd time in my life were lost. This time I because I didn’t have a small child I never saw my doctor, unless I was ill and my face wasn’t frequently sat in their waiting room for jabs and weighings of baby and so on. When I did go for the third time in a couple of years and I insisted on that visit that something was done my GP listened. Once I had my diagnosis my GP said something to me that I have never forgotten and I think could be at the root of many people not being diagnosed. He was totally up front with me and said that ‘he had never had a patient with MS so we were learning together’. GP’s are great, but if they don’t deal with an illness regularly how are they meant to recognise them? I left there wondering how much of a problem this was as the specialist who also found my MS, said he had only come across one other patient in his entire career who also had MS, he was and ENT specialist in his 60’s, he sent me for an MRI as he didn’t know what was wrong either, and found the lesions.

Within one year I had two Doctors tell me they knew almost nothing about MS, so it really isn’t that surprising that there are people out there ill and undiagnosed with an array of conditions. Out of all the NHS people that I had been seen by in the past and saw in the next year only one said sorry. I had had bladder problems for years and I had to learn how to use a catheter, it was the Sister in charge of the urology ward. She asked my history with MS and I told her briefly what had happened over the years. She turned to me and asked if anyone had ever apologised to me, they hadn’t, she then did and her words were that she was apologising on behalf of the entire NHS as they had let me down.

I can’t help but wonder how many people there out there at this very second with conditions that are destroying them, without diagnosis or support, who are being daily made to feel they are mad or a nuisances, simply because those treating them don’t know anything about the condition that is making them ill. I know that not everyone can know everything, but surely there should be some kind of safety net, a battery of test that could be done when everything else has failed to find the cause. If I had just been given an MRI years before I was, I wouldn’t have been forced to go through all of what I did without anything stronger than an aspirin to deal with spasms and constant pain. I am in no doubt there are a million plus me’s out there right now, and I am sorry you aren’t getting the help you deserve and need.