“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
Two Rooms Plus Utilities 
You haven’t had an
MRI for how long! Yes, I read it. Maybe a little medical intervention is good. Every now and again to help you get back on a different path. It sucks I hear you. But to tell you it’s all to do with your age? (No appropriate words right now!) what about other people with the same conditions, treatments, situations? Just idiots! Thinking of you……..😔
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I was always surprised that I never had another one, especially when I was on the trial for the chemo treatment, I thought they would want to see the affect, not just listen to my thoughts on it, but no. This time, I’m going to ask if it’s possible for me to see the results, well its my brain 🙂
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Definitely deserve to know the results. You are not a guinea pig.
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This is going to sound weird but thank you for posting this, it felt comforting to realize someone else was experiencing the same thing. My sleep has gotten horrible, I have woken up wetting the bed, and my memory went to hell suddenly. Nothing changed, I couldn’t process why this was happening so quickly. I am sorry you are going through this, if you ever need someone to talk to that can understand, please message me.
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For me it all started by at the end of June I think. I tried to find the blogs that gave the details, but they are spread out over so many that supplying links simply wasn’t possible. I’m sorry you too have suddenly found yourself here, I hope that knowing your not alone, helps you just a little. Take care 🙂
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Reblogged this on Musings On My Life.
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Thank you 😘
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I tend not to read the side effects either – unless I have a bad reaction which, on the whole, I don’t! Happy Weekend! x
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I know I will be told the results, it’s just that I want to actually see the scan this time. I’ve never seen my brain, so I’m being nosy really 😉
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I’m convinced that if you’ve read it, it will be looking for it and some how willing it to happen. Too many won’t even take the drugs out of fear of the side effects. 😦
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I too believe if you read the side effects of drugs,in a way , you are sending signals to your brain to tell your body you are having those side effects in most cases. Of course there are always the exception. About time too regards MRI scan, I wonder what changes they can see in a person who has MS against say a person with MND I find this all very intriguing makes one feel they would like to know more. These days consultants go into so much more depth explaining to patients about their findings it makes you want to know more, so what do we do,we come home and go straight on the Internet to look up our illness! It’s human nature! Good Luck Pamela, hope your appointment comes up quickly, we are all thinking of you (HUGS) 🌷
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I think I am going to have to push my consultant, he never was a person who offered up information. May be he has changed over the years, but I didn’t get the feeling he had changed at all to be honest, but that could be my memory of him. 🙂
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“..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.” ~Well, proof of the miraculous! 🌋
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I never read the side affects until AFTER I experience them, just to confirm it is the medicine’s fault. I get side affects with every med I take. That’s why I am not taking anything. I rather deal with the pain than with the crap I CAN control.
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I wish that I could cope with the pain, but I am not so lucky. Life without my meds is unbearable, this way, I at least manage the small amount that I do daily. You are so lucky to be able to cope, I would do almost anything to be pain free, something I’m not, but it’s bearable. 🙂
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Yeah, you and me are two totally different stories, but I haven’t had a day without pain for almost 20 years either. It may be bearable most of the time, but it’s definitely tiring and frustrating to not find any relief! Pain is such a complex concept… I wish I could make it go away for all of us!
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Sorry it took me so much super long to be able has respond to this. Me am hopes them can finds something to helps. Me am also to has both MRIs. Mine new eyegaze device will be here soon and me has go see of getting a feeding tube and me am kinda scared. Sleep is a hard thing for me always. Me always has things like insomnia until pass out but is normal for autism and cp and ptsd. But even me am random fall asleep more. Hospitals can be super scary and most especially when your support person not there. Is you likes your new chair? Me am gets a new one soonish to with headrest and other support like tilt because this one us has strap me into because falling.
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I love my new chair, it has changed my life in my home as I no longer have painful arms, and exhausted muscles, I wish I had bought it long ago. Don’t worry about having your MRI, it is so simple, noisy but simple. Some hospitals allow you to bring a CD of music that you like, to listen too through the headphones which helps to mask it, it worth taking one alone just in case. I’m lucky that Adam comes to the hospital with me, he wasn’t allowed to sit with me while I was inside the MRI machine, but I wouldn’t have know he was there or not, you can’t see or hear anything other than the machine. I am sure you will be fine, it is totally something people wrongly worry about.
Take care 🙂
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Me am glad the new chair helps you so much. The MRIs me will be put under to sleep and has headphones and my stuff animal. Mine friend is take me. Me am much more scare of the feeding tube. Every surgery is scary but this will be something that stays there forever. This may be a silly thing but if like me sometimes you is lonely or bored the Amazon alexa is really cool. There is apps for her if you not has Echo device. She can tell jokes and stories and play games with just your voice, and even understand mine speech device. And of course can do more important things to.
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