Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens. It is sudden and complete, in seconds everything changes, I am exhausted, feel physically ill with it, as in a bit sick, dizzy and feeling a little like being drunk but I’m not. The only solution is to go to bed, which can happen anytime from 8pm to 9pm, just depending on how bad it feels. I lie for just a few minutes feeling worse and worse before suddenly going to sleep. It is incredibly hard to spend all my daytime alone and them not being able to stay awake when I do have company. What I don’t understand at all is the sudden change, I am honestly really awake and feel as though I could easily stay up until 10 or 11, then there is this crashing out, like I jumped of a cliff or something. It never happens during the day, although I sleep for a couple of hours every afternoon, then it is a more normal gentle slide into feeling tired and then tireder until bed is my selected solution, normal if you like.

Last night was the normal, to be honest I could have gone to bed earlier than I did but I was waiting for Adam to come out of the shower. By the time I did get there at 8:45 I felt as thought I was almost ready to be crawling rather than walking. As normal the 11hrs of sleep felt like seconds and when the alarm pulled me into being awake, I struggled to let the night go. In the last few days I have read loads on sleeping patterns and those connected to all and any of the conditions that I have, but I can find nothing that is the same as how I feel. Those who have been reading for a while will already have realized that there is one thing I hate more than any other and that is not having a reason for something. I suppose that is understandable having spent nearly 20yrs fighting to have a diagnosis of my MS, but it just niggles and niggles at me all the time. So if any of you have the same problem I would be interested to hear from you as I feel kind of alone at the minute with this problem. I don’t like alone, lol.

My stomach is really bad in the last couple of days, more and more pain, bloating and discomfort, although the letter that was read to me over the phone has arrived, I haven’t received an appointment yet. The letter doesn’t seem to hold out much hope though, the final line she says she isn’t sure if they can do anything to improve my symptoms due to my MS, I still want to talk to them again as I want it in black and white if you like, that all my symptoms are due to my MS and if there is anything, even something small, that can help I am willing to try.

I phoned to book the ambulance for the 8th when I am going to the pain clinic and nearly lost it on the phone when they told me they couldn’t supply a two man team with a stair climber to get me to hospital before 10am. Every time I call them the rules seem to have changed and I thought that this would mean that I would have to make yet another appointment and wait yet another 6 to 8 weeks. I booked the ambulance then called the clinic to find to my relief that they were fine about it. Although I am meant to be there for 9:15 they do now allow for this when you are being brought to clinic by hospital transport. What is now worrying me is that they said there are only 4 slots where you can book the stair walker each day, so I am now wondering how long I will have to wait to be brought home again. I really don’t think they understand the stress of these constant changes and uncertainty cause for people who are ill. After all they are there to supply a service and the simplest thing to do I would have thought is to inform the patients clearly of the rules at that time, as well as to tell the clinics, after all they should have known the situation when they gave me the 9:15 appointment. I foresee another day of things going wrong!

Pain right NOW!

I have been trying to write my other blog for the last hour and a bit and I am getting nowhere with it at all because I am in pain and discomfort that won’t let me think of anything else than it. So I have given up and I am letting it have it’s way I will write about it instead. I know my writing isn’t as fluid and descriptive as usual so please bare with me, but this is real time pain, not last nights and real time is hard to work with. It started about 2 hours ago I had eaten my breakfast as usual, but just like dinner last night I couldn’t finish it and I had been forcing myself to eat as much as I did, last night there was no price to pay, but this morning, there clearly is. I’m not sure exactly what it is as it has just spread and spread, I have never had to date spasms that spread and effect more and more areas. At first it was pain in the center below my breast bone and the pressure feeling that I often have. In a short time I had to go to the loo, the normal push it through that I have been living with for ages, then again, and then the pain rocketed. That is the opposite of normal, clearly making space normally ease things, but not today, the pain just got worse and worse.

It was moving and spreading, not reducing as it should, right up the right hand side of my chest into my armpit and nothing seemed to easy it. I tried lying down and walking around but it it just kept getting tighter and tighter in the middle and a spread pain grew with it. Sat back here at my PC I was breaking out in a sweat and I was beginning to feel sick. As I said I was trying to write but I just couldn’t keep my mind on what I was doing pain just over rid everything and my concentration was completely gone, not to surprisingly. Once again my breathing had to be controlled as a shallow level as deep breaths caused more pain, which by then was also working it’s way down through my gut, from breast bone to pelvic bone I had large areas in spasm and everything around them was blanketed by an increasing ache. It was like a cascade, bit by bit not just in the front of my body but through to the back, then suddenly it started to ease and pulled slowly back to just the upper area of my abdomen. It was almost as thought it had no further that it could go, so it gave up, I’m sure that had nothing to do with it.

It’s an hour since I started trying to write this, now it is just the center area, my stomach and below basically and as always it is through to my back, no heartburn, no reflux nothing, just incredible pain in my gut. Every time this happens it is worse than the time before, but still no appointment from the hospital and no idea what the cause is. I can really see no other reason other than my MS, as this feels so like spasms and they seem to spread, that is something I don’t understand. After three hours of pain that although I have my full amount of medication levels is still really bad. How can I be so drugged up to deal with pain and still feel this the way I do? At least now it is fading, but as always it is leaving behind a feeling of being bruised, almost as though I have just been in a fight or something. It isn’t just the pain though, that is just part of it, but that type and level of pain drains you, I am now once again feeling exhausted for what and why? This on top of everything else clearly takes it’s toll, my body is permanently battered, but there is a limit to what it can take at any one time. So all of this is written down and hopefully when I do get to see the doctor it will make more sense to them than it does to me, but I am really now thinking that they are at the end of what test they can do and they really will tick the box of MS, not much help to me unless they come up with a painkiller that will mean I don’t feel it.

Accepting Christmas and more

Monday morning and I woke to two legs in spasm! Since Friday they have been bad again, I had been lucky and they had settled over November just the odd spasm, rather than having the odd period of normality. All weekend they have been driving my nuts again, no position to sit or lie in where they will settle and just act like other peoples legs. Stress as we all know by now it behind this, and stress is what I had thrown at me on Friday, this is why yesterday I questioning is it worth it to keep going back when the result isn’t my getting better, but my getting worse. Everything seems to be out of kilter, I have had more problems with my dexterity and pains through out my body. When I went for a sleep yesterday afternoon, I at first just couldn’t settle, I had so many twitch and spasms that sleep seemed impossible, it actually proved just how tired I was, as eventually I drifted off, somewhere around the point I was asking myself if I should just get up for the twentieth time.

I was really in two minds about returning to the hospital yesterday, I know I have to go and that is the beginning and the end of it, but I can’t stop wondering how many people just never go back because of experiences like mine. Adam is going to speak to his boss this morning to see who it is exactly we should complain to, the treatment I was given, is simply not right for any patient. Transport for the immobile is essential and although I am not sure what I can do to change it but I am going to give it my best shot, I am not a person who moans and does nothing, regardless of my health and the fact I can’t get out there and meet any of them, what I can do is make a pest of myself, until someone gets so fed-up hearing from me that they take some action. I really do have to try not just for myself, but for all those who can’t complain themselves, which I fear there are all to many of. One of the things I was thinking or was to send the email not just to the NHS but also at the same time to the local papers and if I can find the right ones some of the investigative TV programs as well, it is always amazing how bringing in the media makes some people actually take real action.

My stomach and gut still hasn’t settled, I have had two days of trying to eat normally but it really doesn’t like it, last night I thought that I would have some yoghurt at about 8:15, I ate about a third of a large pot, and enjoying it very much, but by 8:45 I felt so ill I had to go to my bed. This morning I have had my breakfast and again I have pains all through the top half of my gut, I know it just has to settle as what has happened to it isn’t exactly something it was designed to put up with, but this is day three!

I have had that itchy feeling that I should be doing something and I know it has everything to do with it being December! I used to take a weeks holiday at the end of November, just so I could give the house a really good clean, including things like shampooing the carpets and washing walls. Something I am sure I got from my mother, but I was itching to do it and I still am!!! It is one of the silly things that get to you when you can’t do it. I was always so house proud and I actually loved doing housework, there was to me no feeling in the world like making everything clean and shiny then sitting back and just looking at it, that is all I can do now, look at it. Once cleaned I know my home was ready for Christmas and everything else would take care of itself. I know that I can be very old fashioned at times when it comes things like that, but you can’t change who you are inside. I may have had to accept, but accepting has nothing to do with liking, liking is a million miles apart and I doubt I will ever like it.

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?