Letter of errors

You know those times when everything seems to be just ticking over and nothing is really happening and then without reason something appears to destroy that feeling of equilibrium. Well yesterday it happened again. Adam brought the main in when he arrived home from work and I had received a letter from the hospital confirming that I have gallstones, which I already knew from when the scan was done, but there is one line in my letter that is bugging me. For some reason that I can’t think of, or where it came from, and neither can Adam as he was there with me when I saw the specialist, that says that the pain appeared to be more on the left side rather than on the right where my gallbladder is. I remember being asked if there was pain on my left side but both of us remember that I did say yes but I also added that I thought it was being caused by the pressure sensation on my right. I know it sounds like a small thing, but this actually goes well with what I was talking about yesterday morning. Yet again this is the type of thing I have continually come across, somehow the doctor I saw had taken one line and turned it into something that it wasn’t. I know this is something that we can put right when I see her next month but if she hadn’t put it in writing this would remain on my file and I would have no idea why nothing was being done about the source.

It takes such tiny mistakes to land up with everything going in the wrong directions, I had in the past thought it would be a good idea to take a Dictaphone in to any meeting with a doctor, at least this time I had Adam. I used to always go to see a doctor by myself as I prized my independence, but in someways I am glad that Adam has to come with me, I now have a second voice and set of ears. I have never done it but I have often thought about asking to read my hospital notes as I suspect there are loads of examples of this sort of thing. I used to often think about asking to see them as I know that I have the right to but well I have lost the interest in fighting with the NHS if I had been going to do so I should have done it years ago when I had the reasons to, when they wouldn’t listen to what I said. What is in the letter is something I will be able to correct soon enough.

I suppose it is a fact that when ever there is anything wrong with you suddenly you have no power over anything that is said, thought or done to you. Doctors take over and we let them, which I don’t quite understand when I really think about it. Why do we let them? I know we have to trust them as they know about medical issues, but when they jump to a conclusion about us there is nothing that we can do to correct it, mainly as we don’t normally even know they have done it. We for some reason think that a Dr can tell everything about us in just a 15 minute consultation and we are then surprised when they get it wrong. May be we shouldn’t be. I know if I sat and someone talked to me for 15 minutes about something I wouldn’t be able to really draw any conclusions about anything major. It might well explain why so many of us don’t get the right diagnosis as I said yesterday the doctor draws a conclusion that is wrong, and the real condition is totally missed.

I have the feeling that when I go back in November we will have to start all over again as no tests or explanation has happened that explain the really bad pain labour like pains, or the incontinence or the malabsorption of my medication. I really think we are back to the start with a little knowledge as we now know what is causing the problems at the top of my stomach, but what is causing the rest?

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.

New Problem?

I ended my post yesterday in a rather hurried and odd fashion which I apologies for, I have to say though I spent the rest of yesterday in that odd place. All evening I was still trying to work out why suddenly I was feeling and using the word normal in connection with something that is clearly not normal in any ones life. I know that it may sound like a really odd thing to get hung up on but it says a lot about how I am physiologically adjusting to everything, even something as horrid as constant bowel leakage. I don’t know where the acceptance point is but this one made it’s self known, there is so much in my life that due to my health is wrong I guess that if I didn’t adjust and accept I would be driven made. Think about it, if I accepted none of it and reacted to every pain, spasms or twinge I would be a gibbering wreck, all that happened yesterday was I caught the actual point. I didn’t find it upsetting that I wrote that or anything like that, I was just stunned and became fixed on it, meaning I could write no more.

The nurses have been and gone this morning but something happened last night that has thrown a whole new light on what is happening with my bowels, it has also added doubt to it having anything to do with my MS and the possibility that is something totally separate. I had been to the loo just before I lite my last cigarette of the day, I stood up lifted my glass and headed for the kitchen before going to bed, as I reached the kitchen door I knew that I had just messed myself again, I put the glass on the counter and headed to the loo. I discovered that what I had passed contained a whole tablet, clearly there on the toilet paper, I could even tell from it’s size and colour that it was my 15 mg Oxycontin tablet. They are slow release tablets so they are meant to continue releasing their medicine as it travels through me, but not that slowly, or possibly quickly, I take two each day one in the morning at 8am and the other at 8pm, which ever it was it shouldn’t have been there. The nurse immediately said Malabsorption, the cause and the effects depend on what the cause is which it appears are extremely wide and varied. Yes I have done a quick lets look it up and scare the hell out of myself session and it didn’t scare the hell out of me, it just confused me more. I have to say I am glad the doctor will be here in the next couple of hours, leaving me no time to really think to much about it. It would explain the problems that I have had for the last few months when it comes to controlling my pain levels. If all my medication is going through to fast or not absorbed, well the result is pain for me regardless of the quantity that is going into me. despite that there is one big thing that doesn’t fit, I have been gaining weight totally uncontrollably for months now, all I read said the opposite should happen. I am not at all surprised by this, my body has always had a habit of inventing new things to put me through, finding another one, well that is my life.

What ever the Doctor thinks this is, I am clearly going to have to see another specialist and there lies another problem of getting me anywhere. I know there is no point spending to much time reading or worrying, the whole process of diagnosis of my MS taught me that, I just have to wait and go through the system in the way it works, there is no way of speeding things up or changing the process just for me, as they won’t. If my GP wants me to see a specialist it will be weeks to wait, then the organisation of getting there and back is a nightmare. In someways it might just be an idea for me to stay in hospital for a few days and let them pull me to bit, fix my teeth and give me the list of what to expect next. Just like yesterday I am totally numb about the thought of something else to deal with, something else to be fixed or not, it kind of feels expected and that word again ‘normal’.