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!