“Frankly, I’m surprised to see you even sat here in front of me, awake at all.” Those were the first words that my neurologist said to me, once he had read my referral letter and checked the list of drugs I am on. My GP had asked him to see me following the development of what I suppose appear as sleep issues. There had been no change in my drugs or anything else, but I was finding myself waking up or should I say not, sat on the edge of my bed during the night. I can never remember actually going through the process of moving to the edge of the bed or sitting up, but there I am, unable to wake up enough to either lie down again or get up. My head will drop forwards and I wake, but just long enough to raise my head and instantly fall asleep again. This can happen over and over until I do eventually wake. On its own, I wouldn’t have really been bothered, but then I started falling asleep in my wheelchair while trying to get to, or back from the toilet. Again, I am unaware of falling asleep, just waking up or being woken by Adam sometime later. There had been no change in my medication when this all started, nothing had changed at all, not drugs, routine, diet nothing at all, just this sudden odd behaviour. It was closely followed by my starting to wet the bed, and the dip in my memory and all the other things that I have written about over the last few months.
Both Adam and I smiled and half laughed following his comment, as it has been one of the things that we have both been astounded by over the years. It doesn’t matter what drug they throw at me, or what the side effects are supposed to be, I never have the slightest issue with any of them. Yes, I should be asleep 24/7, and I should be totally unable to even think, but here I am still managing to live my life. Yes, I have a list of growing issues, but as nothing else has changed, the drugs in themselves, seemed to be irrelevant to the issues I now have. When I stressed this to him, he smiled and said: “Well, you do have to take in the factor of your age, as you get older, nothing works as it once did. Even how we react to medication changes.” I didn’t at the time have an answer for that comment, nor did I have a way of questioning, but it didn’t sit right, after all, I’m 56, not 96.
We discussed how the drugs I take are working for me and what relief I find or don’t find in them. I went over the different sorts of pain I have, and when I take my booster doses of morphine. He did seem a bit surprised at the fact that I don’t take them ever day or even every week, I think he thought that that would be the answer he was looking for. I guess all doctors look for the simple answer, but if it had been that straightforward, I wouldn’t have be sitting there as my GP would have spotted it. He wasn’t giving in totally on my drug regime, he wasn’t too happy about my being on both Gabapentin and Pregabalin. The latter had been added just about six weeks ago to try and counter problems I was having with nerve pain. As it is a drug that has to build up in your system, I couldn’t be sure if my nerves had simply shut up, or the drug was doing it’s thing. So, I wasn’t at all bothered about taking it out of my drug list, especially as he wants to replace it with a new drug, that is proving to have a good affect on that sort of pain. Sorry, I can’t remember it’s name right now, when I know, I will let you know too.
I proved over and over that my brain isn’t working the way it once did. Adam spent about as much time talking as I did, as I was frequently totally lost and unable to answer his questions. He isn’t just leaving it at changing one drug though. I am to go for an MRI, in fact two. A normal one, followed by one done with a contrast dye. As it’s now nearly 16 years since I had my last one, I have to admit that I am really interested to hear what the changes have been over that time and where the latest lesions are, as I have a few theories of my own as to what is going on. On top of that, he is sending me back to rehab. I really wish they would call it something else as it makes me feel like a drug addict or drunk. What rehab will do is to assess me and see if there is anything that they can suggest that will make my life easier. Once again, he warned that they might want me to come into hospital for a couple of days, something that I am even less happy about now, than I was the last time he suggested it 8 years ago. I live in such set routine, one that the hospital will never be able to accommodate and I know without a second thought, that I would find the whole experience destressing, from entry to being sent home again. The biggest problem though is I won’t have Adam with me. As I showed even in the short time we were at the hospital this time, I don’t remember things, so if they ask me any questions, without Adam, they will probably be given the wrong answer, or no answer at all. But I’m not going to worry about that one right now.
I spoke to my GP this morning, as he called to say that he had the letter from the consultant about the change in my drugs. I told him that it had been implied that my age may well be playing a part with what has been happening to me recently. To my total joy, he laughed. Just as I thought, he reassured me, that I’m not that old. Although both I and my GP think this is probably not an issue that I am dealing with yet, it isn’t actually a totally stupid consideration. As we age, we do actually become more likely to suffer from side effects, even from drugs that we have been taking for years. These side effects usually slowly increase, not in sudden changes like the ones I’ve been going through over the last six months. Plus, to date, I can’t think of a single medication that I have actually suffered side effects from. I’m a great believer in the don’t read and it won’t happen school of thought. I’ve never read those horrid lists and I’ve never once had the slightest feeling that anything odd is happening to me. So hopefully, three months from now, scans and tests done, we will know what has been, and is happening to me.
Please read my blog from 2 years ago today – 17/02/2015 – Ignoring my disability
I started peeing for Britain yesterday evening, I had noticed over the last few days that I haven’t really been going to the loo that much, but I have been so wound up about the other end, that I didn’t put that much thought into it. Adam had taken an early shower and just after he stepped into it, I knew that I needed