Here we go again

I know that I have been saying for quite a long time now that I am going to come back to writing, but it somehow just didn’t seem to happen. Days passed one by one and when you live in a world where every day is the same, they pass all too easily without even knowing that they have. I seem to have slowed down in everything that I do, it’s not intentional, but it doesn’t matter what it is, I’m slower at doing everything. The routine that I live too, just a few months ago always left me the afternoon to play with, which was often just what I did, I played games on my PC, now if I find an hour at the end of my day to play, I’m lucky. It is that more than anything else that has held me back from starting to write again, where was I going to find the time? I still don’t have the answer to that, but I have woken up to the fact that if I don’t write again, I probably never would and I couldn’t have that happen. I know already that each post is going to take me days to write, not just a couple hours, so please don’t expect to find them pouring out and appearing on every day, that is not going to happen, but I am back and I will write when I can.

Originally what caused me to stop was I honestly needed a break, but I had every intention of starting again after the New Year, I never thought it would be the New Year after that one. My plan was destroyed as I have been really not well for the first five months of this year. It actually all started on December 31st when I went into a flare. Unfortunately, it was a rather dramatic start to the year and even just as dramatic to witness. It was the worst flare I’ve had for a long time and it was one that I couldn’t hide from Adam. It left him very panicked and scared of what was happening to me. I was shaking and having extreme spasms that were making my breathing difficult at times. I’m normally really good at hiding all those things, other than when my body shakes, that’s impossible to hide. Adam has never been good at handling anything extreme, he is one of life’s worriers and incredibly good at assuming the worst. I’m not sure who took longer to feel normal again, him or me, but we both eventually got there, just for me to lose my voice. And so it went on, bouncing from one thing to another, struggling to find my health and somewhere along the line, my brain started to slow and I was struggling trying to just keep up with my daily routine. Trying to fill in all that has happened is almost impossible as I honestly can’t remember many of them, but they will become part of other posts as things happen to jog my memory.

One thing that has happened, is I have returned to seeing my MS consultant. Just after I became housebound, I stopped going to the hospital. I knew they would collect me by ambulance, but the effort it took and what it took out of me, just to have him listen, nod his head and say he would see me in a year, made it all seem pointless. Because of the unusual problems, I was having with sleeping, I feared that I had a large new lesion growing in my brain close to my sleep center, my district nurse said it was possible and that even if not, that I had to have it looked into. I know I have written about it in the past, but I had started finding myself sat on the edge of my bed in the middle of the night, unable to wake up fully and fighting with myself to stop myself falling to one side or the other. When I did wake properly, I always took myself to the loo and went into the kitchen to have a cigarette, but I was falling asleep in one or other places as well. Adam was having to come and find me and take me back to bed, with the whole thing to happen again a couple of hours later. They sent me for an MRI which showed that my hunch was wrong, I had thought there was a new lesion around my sleep center, but now that he had me back in front of him, my consultant started to actually help me with other things that he had before ignored. He changed some of my meds and has started me on a new one to help with the spasm which grow in number throughout the day until in the evening they are so tight and painful I don’t know what to do about them.

The first drug we tried I didn’t last long on, even though I only took half a tablet slowly built up to three times a day then increasing to whole tablets, by the time I reached two whole tablets and one half, I started falling, often. I’d found I had to be really careful and I had to think and concentrate every time I stood up. It was so bad one night, that I landed up falling backward into one of our units that is filled with part of my crystal collect. Only one glass was broken but I was hit on the head by a decanter. I refused to take any more. Luckily he had suggested another to try if I had problems and this second table is working well. I have to take it four times a day but I am happy now on two whole and two half tablets without issue and I’m holding there as their effect is good and I don’t feel I need anymore. So far my return to the consultant’s care is working well. We will see how things go, but the first smiling nod will see me pulling out again as there’s no point going if I don’t need to.

Through more tests, it was discovered that my night time adventures were being caused by a form of sleep apnea, one they can’t do anything to help with. Apparently my the fault lies with the signals being sent to my lungs from my brain, it seems to forget every now and then that I need to breath. Adam had said several times that he thought I was dead, in fact, he twice woke me up as he couldn’t wait any longer for me to actually take the next breath. The good news is, my brain does work it out, that’s why it keeps making me sit on the edge of the bed. Somewhere in my head, I know I have to breathe and I’m doing all that I can, to make it happen. So here I am with yet another condition to add to my ever-growing list.

The other biggy is more recent and at this moment still active. On the surface, it doesn’t sound like much when I say that I have a UTI, it’s just this infection has been live now for, well neither of us can really remember if it’s 10 weeks or 12. I have been on different antibiotics the whole time. Every time I finish a course of them, some of which have been for a week other totaling three weeks, with a gap of a couple of days between the first and second attempt. Every time I have finished a course of them, within 36hours the stinging starts all over again along with terrible pains in my lower stomach and I send in another sample for testing. Each test results, show a different bacteria than the first did and we start all over again with another attempt. It is driving me mad, but what can the doctors do, nothing really. Even if he sent me to see a specialist, they would do exactly the same thing, run urine tests and put me on antibiotics, so there is no point making the trip.

I promise I will be here within a month, probably a lot, lot sooner, For those of you who follow me on twitter, well all you have to do is look out for the blue lady from my home page, to appear in my tweets about #chronicillness, that will signal that I have made a new post that day, so keep your eyes open.