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!

Rebuilding the Cocoon?

Friday seems to have taken a lot out of me, it is always the knock on that is more the issue than how I feel at the time. MS seems to let you cope, then kick you repeatably for even having tried to. I suppose it will all take a few days to settle, my routine didn’t exist last week and there were quite simply too many changes to deal with, I know I will get there but these are those hidden moments, the bits that others don’t see. I don’t think my gut liked the treatment at all, I am finding it now rather painful in strange places and clearly not happy with the food I have been putting into it. I can point to the exact positions where my breakfast, dinner and tea are, and I can tell you the pain and nausea is clear, I suppose part of it will be the ruff process of pushing the scope, some bruising and so on I expect, but most is empty space syndrome, gaps of air and crashing food.

I spent all of yesterday feeling half here and half longing to be anywhere else, especially asleep. I did at least get my afternoon nap and one again landed up in bed before 9pm, so yes I have just caught up with “Casualty”, I don’t understand either my love for hospital dramas either, I suspect it is because a lot of the time I actually know what they are talking about and sometimes even manage to diagnose the patient before the Doctors do, that I have to admit is fun, a bit like a who-dun-it. I have always enjoyed working things out and I am sure it is also the reason I can’t stand slapstick humor, what is funny about something you knew before it happened, actually happens, sorry I don’t get that at all.

I can see it is going to take me a while to recover from all of the last week, there are just so many parts to it that my body is still catching up. I know everyone seems to think that I should have a great desire to get out of here, but when my venturing outside causes so much stress, why would I want to go anywhere. I really do wish now that I hadn’t asked for help at all, I would be in a much better position if I hadn’t actually. If I had just got on with it and said OK this is the way my body works now and I have to work it all out myself, maybe just maybe I might have it all under-control with out any stress and without people in my home annoying me, and without yet others forcing me out of it. I managed fine for five and a half years then I asked the NHS to help me and it has been nothing but upsetting from that point on. Isolation was a much happier place believe me, everything just ticked along, day after day and I ticked along with it, I would love to have that back, life has been distressing since I lost it. It is strange how help can land up being anything but.

I suspect that when I do go back to the Gastro. department it will be once they have the results of the biopsies, 4 to 6 weeks time and I expect that guess what they will blame it on my MS, as I did right back at the start in March or April. My gut has simply stopped pushing food through, what I wanted then and would like now is a solution, I just hope they are now out of tests and are happy to just do what I asked and help me make it work well enough to be healthy and to not mess myself daily, I don’t think that I was asking that much really. Before that though I have another appointment this month to go to the Pain Clinic after the mess on Friday I am looking forward to this less and less as my appointment is for 5:45, I know the shifts change at 5 so this might not be a smooth system either. There is a real feeling at this minute of my not wanting to go, I suppose that is understandable and a risk I once again have to take, as I am sure if my pain was under control I would feel better in myself, but I can’t put into words strongly enough that I really don’t want to leave the house again if I can just find a way to pull myself back into my cocoon and lock them all outside it for good. Possibly a silly thing to do I know, but in my heart that is really what I want.

To far alone

Yesterday ran a way with me and I found myself with tears in my eyes frequently. It started to go wrong when I actually managed to first remember to make a phone call and second when they actually answered my call. I received an appointment to go for Breast Screening, I knew where the unit was and strangely it is right in the middle of Glasgow just a short distance from Central Station. I decided to ask a few questions about getting there and what would happen when I got there because of my needing help. Just as going to the hospital I was going to have to arrange an ambulance and the stair climber but when I asked about what the would happen on arrival, I felt myself going in to a sort of panic. The clinic is in a very public area and there a about 8 steps from the road to the doors which of course would mean a slow climb in the public eye just to get in there. Now that may sound like nothing to you but lets step through what this day would really mean to me.

First as always would be the getting ready and the stress that alone seems to cause along with the added fatigue. Next getting out of the house and into the ambulance, not a nice trip down the stairs but neither is what I spotted on the last trip out, that people in the blocks near ours, leaning out trying to see who and why the ambulance is sat in their street. I can only imagine how much that would happen at the other end. This building is not a hospital and it is on a very public road where hundreds of people go by and like it or not that will mean loads of them starring, to get up those steps would take a couple of minutes and of course I haven’t added in yet that Adam couldn’t be with me, as they won’t let him come with me in the ambulance. After climbing those stairs in full view of all those on their lunch break, and once actually in there well the person had to think about this bit but said eventually that she thought there was a wheelchair. Next would be the lift and then waiting for the scan where, she said it would take a few minutes but getting the scan done, she thought was possible from the wheelchair, it just meant adjusting the machine. Then all the problems with getting clothes off and on before having to go through everything in revers eventually getting home. Just sat here on the phone discussing it I was getting into a panic about it all, my head was spinning about how I could and would manage it and I was terrified, I couldn’t do all that by myself, there are just too many possibilities of things going wrong. It was completely stressing me out and I got into such a spin that I was a stuttering word less mess, but I managed to cancel the appointment. There is just no way I would be able to manage all of that, even now when calm I know I can’t manage it, it is just too much.

I have gone form the wildly nutty over confident person to one who can’t even think about a simple journey. If I was going to an actual hospital I would be fine, I have done this three times in the past few months it is where this place is and the fact I can’t have Adam with me to take over when I got lost. 5 mins on the phone and I was a wreck, tears and shaking and fear.

The evening found me back in tears and this time well it was understandable, I was watching children in need. Seeing those families and what kid have to go through, well you would have to be very hard person in deed to not have a lump in your throat and tears in your eyes. Having lost a child my heart went out to those parent who had lost theirs and the tears where all over the place, understandably.

Management

Good morning world and here we go again, another day to work my way through. Sorry I have been reading all the responses to yesterdays post on here but mainly on Twitter and I am getting back very much what I had heard in the past, pain clinics don’t really help. I know until I go and speak to them I won’t know what they can or can’t do for me, but I just wish there were more people saying it help, rather than a clear majority saying it doesn’t. I find it so frustrating that here we are in a medical world that can transplant major organs, but the simplest thing that most humans suffer from to some extent in their lives, still defeat us.

When I had my first signs of MS it was for me the pain that I noticed first, apparently not everyone with MS does have pain, I only found that out recently and it amazed me as I hadn’t heard it before. It also came with the nice after note that there is little that can be done as the pain increases through out our lives. It is wonderful when medical people cheer you up with those statements. Not having people believing that there is really the level of pain you are suffering, is hard to handle. I at one point convinced myself that I had to be the worlds biggest wimp, as everyone must be the same of me and the dismissive attitude I experienced from the Doctor had to be because everyone lived like that. Pain grinds you down and with the ‘none belief’ of others it also pushed me into depression, something that since I have had my Diagnosis has never reappeared, but I can fully understand how someone that was in that position could actually commit suicide. What ever is wrong with you, if you have pain continually, even a mild pain is highly destructive when there is no escape.

With the aid of all my drugs and a couple of good gins on top I am lucky now as I get the sleep I need so much, but if I didn’t I would have gone mad long ago. For me the only other mild escape I have from it is when I keep myself busy here at my PC, distraction does help and that is a fact! Sit in a chair starring at the TV or lie in your bed trying to sleep and then you know how bad it really is. Even sat here I have to keep moving, shifting the pressure areas that my weight is on. As I now know though that shifting is actually causing more pain, the pelvic one. There is no escape, everything is a pay off, relieve one, aggravate another. There is no universal thing that I can compare it to and setting it out so it can be understood is really difficult. I can’t say clearly that it is like, or if you imagine, it isn’t describable in that way, as I could never have imagined it before it began. None of the illnesses I have had in the past get anywhere near it as at this second there little of me that isn’t at the very least aching.

So many of us live this way and yet as I said at the beginning we are still no closer of bringing relief to any of us. Until that happens we all just live with it and unfortunately there are always going to be too many of us. Managing pain actually is the wrong thing to call it, pain can’t be managed, what is managed it our ability to live with it. I manage my life around it, to ensure I can cope with it, the pain doesn’t actually change, it is my coping mechanisms that are managed, pain is defiant, self-centered and relentless and we have to be just the same in return.

I am

There is a strong desire today to not write, to simply post “I feel crap and I am going to bed”, but that isn’t what this is about, is it. To stay true I have to post daily, but there is no rule about length.

Just as I published yesterday’s post the MS Nurse arrived, she was here for about 45mins and she confirmed my thinking, I am either in a flare or everything has moved up a gear and I am once again on a faster slope, only time will tell and I am sticking on the positive side, this is a flare. We went thorough everything that has happened since Christmas and then the point a several weeks ago when I started going down. I have tried to pinpoint when it started snowballing and the first signs are right back at the point I had the nurses in and out of the house and them the Dr here, all things that upset my routine. As you all know I have been grumbling on here about the pain in my pelvic and legs, since then. Add in the mad pain in my back that didn’t fit to pulling a muscle, which like everyone else I had done before, the pains never matched and took too long to die down. I also spoke to her about the tightening of the tendons in the backs of my legs and how my left foot has dropped and the continual spasms that lock them up at times. She is going to talk to my GP and sort out a new spasm drug as clearly I need it, but that isn’t the major outcome, I have agreed to go to the new pain clinic at the Victoria hospital.

My GP had suggested it months ago but I wasn’t keen to go for several reasons, first being the getting there and back, but as unpleasant as it was in the stair climber, I know I can do it, so first one gone. The second problem is my image of what happens at a pain clinic and what I learned about them years ago. My knowledge came from a friend of mine who went there for several months for treatments and training in relaxation, I know how to do that and it helps a little at times and I don’t want to have to keep going back and forward wasting time for nothing, well it was for her nothing as the pain was worse not better when she stopped going. I have no faith or belief in acupuncture, psychologist, hypnosis or any of that stuff. I have tried things like tens and so on and none of those type things worked for me either. Sorry but I really am the type of person who has faith in one thing and one thing only drugs, there is a drug out there I am sure that will control my pain and bring it down again to a livable level. I will see when I get there I suppose but I am still not really convinced there is anything they can do. I was totally open with the nurse and she said that the image I have of pain clinics isn’t totally accurate. Yes they do do most of what I knew, but they also have access and better knowledge of drugs that could help me that my GP wouldn’t prescribe without a Consultant behind it, so on that basis I have agreed to go, the first person to mention anything else will be shot. I just don’t have that energy required for all that faffing about, and disrupting my routine making life harder not better. So the clock has started on that waiting point.

All that out of the way, today, as I said at the top I feel totally wiped and lacking in effort or effect, this has just taken over an hour to write and it is far from my best, I know that, but when you are fighting through brain fog, body concrete and pain through every movement, what do I expect. My desire to hibernate is growing daily, I would love to just escape right now as purpose is hard to find when you feel like this, I am sometimes reluctant to say on here things like the above as to some it may sound like I am ready to give up, I am far from that, but right now my body wants to coast and doesn’t seem to mind what that actually means. I find myself numbed to emotions, not meaning to sound down nor feeling it, time and everything else is just passing by me and over me and I go on. I could be anywhere as I am not effected by what is around me, I am, is all I can say about me. I am in pain, I am lost, I am drifting, I am silent inside, I am tired, I am sitting, I am numb, I am still ALIVE and strangely with all that I am STILL HAPPY. And now I am going to have a sleep.