In the past few years, I have never had the slightest problem sleeping. In fact, if anything, I have slowly started to sleep more and more. My record so far, is 15 hours in just one day, 13 of them without a break. But in the last few weeks, something odd has started to happen, that I really don’t understand. Firstly, I have started waking up, sat on the edge of my bed. How I got there, I have no memory of, all I know is that I wake up because my head has dropped forward suddenly, it’s that snap action that makes me wake. Often, though, just long enough to sit upright again, then it repeats itself. Eventually, I wake and go to the loo before I head back to bed and sleep again. On a bad night, I can go through all of that three or four times.
Then came the pièces de résistance. Having gone through that palaver a couple of days ago, after going to the loo, I went into the kitchen to have a cigarette. From the moment that I settled into my wheelchair, I felt quite awake, and very much in need of that cigarette. I think I had had about three or four puffs, before settling my wrist on the counter top, with the cigarette held over the ashtray. I find that at night, doing something like holding that small tube between my fingers is hard, many have flicked their way across the room, hence my resting place. Then, well then, half way through my cigarette, I fell asleep. I didn’t wake until 3 hours later. I was slumped forwards in my wheelchair, my eyes were in line with the second draw down in the kitchen unit, and my cigarette burnt out in the ashtray. I don’t remember even feeling tired, or that I was starting to drift, it must have been a split second from awake to asleep. When I did wake, I felt exhausted and incredibly sick. Despite that I headed back to bed at speed, only to wake another 3 hours on, sitting on the edge of my bed. I don’t have a clue what is going on, or why this is happening, I just want it to stop. Nothing like this has happened to me before and to be honest, the worst thing is, I’m not getting the kind of sleep that I really need. When I sleep, my muscles have a chance to rest, something they really need, so the fact that it leaves me with muscles racked in pain, is just the cherry on top. After falling asleep in the kitchen, I’m now worried where next I will wake up. Maybe half way across the hall, or sat on the loo.
I might not have the answer to that one, but I am hopeful that I might have found if not the answer, something that should improve my eyesight. It has been getting worse and worse over the past 11 years, my left eye is affected by my PRMS, but I have Macular Degeneration in my right. It is something that affects a lot of people in later life, for me, well like everything else in my life, it arrived early. By chance, I was watching a medical show on TV the other day and they tested out some research on a way of improving everyone’s eyesight in later years. I was sat there waiting for them to debunk it, as that has been the results of so many of their tests, but not this one. Apparently, our eyesight is reliant on three what the call, macular carotenoids: lutein, zeaxanthin, and meso-zeaxanthin. All of which can be found in brightly coloured fruit and veg, especially yellow and red ones. The problem is that you need to eat so many, that nearly no one does get enough, especially not enough to repair the damage done by time.
Normally this show doesn’t recommend that you take supplements of any sort, they believe in the natural angle, but not this time, this time, taking supplements is the only realistic way to get enough. They tested it on a mixture of people and not just for anecdotal results, they carried out medical tests that can measure the levels of carotenoids in your eyes. In just 90 days, the improvement was huge, something the scientist said would continue. They recorded not just being able to see colours more brightly, but they could also see finer details, that was the point I woke up to. My eyesight is atrocious, almost everything that I see has a blurred effect to it. It doesn’t matter how close I am, the edges are fuzzed. If I cover my left eye and look at something with just my right, I have total blind spots, with tiny gaps, like looking through a piece of heavy lace. If either of these things can be fixed, or even just improved mildly, it’s worth taking one more pill a day. The pills I’m taking are called “MacuShield”, I will give you reviews as time goes on, if they help me or don’t, but even if my eyesight was normal at the moment, I would still take it, as everyone’s eyes fail in time, according to their results, this could prevent it from happening and for less than £0.02 per day.
I have had to give up so much from my life that I loved, just because of my eyesight. I don’t expect to be sat here in a year from now, doing the finest of needlepoint embroidery or working with seed beads, but it was my eyesight that took these passions from me, long before my dexterity joined in. It is one of those things that we all take for granted, we open our eyes and the world is there, in all its glory. I really do fear the day that I find nothing, as I had a taste of that about 10 years ago. It lasted two days, I could still see shapes, but little else, it didn’t matter what I tried. I was pretty close to blind and at first totally terrified. I spent the whole of the first day, sat here bent over trying to make out something, anything of what was on my computer screen. All the time I was trying to work out if I could still manage to work. Clearly, it got better and I continued to work, but I really don’t want to go through any of that again.
Please read my blog from 2 years ago today – 18/09/2014 – A growing danger
Two Rooms Plus Utilities 
Your body has problems enough. T’s time to quit smoking. Sleep disturbance is common to aging and M.S.
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Sleep disturbance, yes, but not waking but shifting across the bed to be sat on the edge, doesn’t equal disturbance, just disturbing. 😕
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true. And that will need a wiser person than me to solve.
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Oh my that would be very disturbing! I guess, since only recently discovering your blog I was quite surprised to learn you smoke. Given the negative impact it has on MS and our body and brain overall, however, far be it for me to judge, honestly, but with your recent sleep apnea or whatever it is, it does seem to be getting a little dangerous. On another note I was recommended a multi vitamin made by a doctor with MS that I have found helpful, and it also contains 6mg of lutien. I won’t go into all it has but I order it on line and the website is MSSential.com. I particularly like it as it has my vit D plus all other MS suggested vitamins in one go.
Hugs
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I have about 6 years to live, if my doctors are right. I’ve been housebound now for 9 years, with all the limitations on my life that goes with it. I have two treats, I allow myself a gin and tonic each night, two on a Saturday, if I want it, and my cigs. Until 4 years ago, I smoked 60 a day, I now only smoke 10 – 15 now. Not even my doctor tells me to stop smoking any longer, as they now see clearly, I have little else in my life and in the end, it’s not going to make the slightest difference, other than the most important, its making me happy.
I know you are new to my blog, but I hope you have picked up on one thing, I put a huge store on happiness. I am convinced that as long as we can find our own happiness, we can live with almost anything, including that ticking clock. I personally don’t agree with people taking illegal drugs, but, if they were in my position, I would turn a blind eye, if it were adding to their happiness levels. There is no hope of changing the course of my MS, PRMS is very different from RRMS. We share many of the symptoms, but I never get remission, unlike PP or PSMS, I get relapses along with continual progression. Not one of the MS drugs work and all they can do is control the pain, but even that often fails. Yet I am happy, I fear that not enough of us, ill or healthy can say that.
Thank you for your suggestion on the vitamins, but I am already on concoction that my GP has prescribed for me, so hopefully, I have it covered 🙂
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I’m sure you have the vitamins covered lol, I don’t know what I was thinking other than my basis human desire to help. covered. I do totally get your store on happiness – I’ve always been a glass half full kinda gal – Thankyou for taking the time to explain. I really appreciate it.
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When I was diagnosed (by one of the best MS specialists in Canada) he told me that no one knew what caused it, there were no cures. and there was darn little to control it. He was right. He was one of the best and brightest and he had no idea how to make things better.
It was then I had an epiphany. Half of all doctors graduate in the bottom half of their class. And all of them are merely practicing medicine.
So as far as possibly having only 6 more years…. they might be right they might not. The trick for me (at 65 I don’t have that many years left either if the stats are to be believed) is to find ways to make whatever years, months, days hours minutes I have left as meaningful as I can.
We are different people with different needs. For me cigarettes don’t work. if they work for you… go for it!
The Old Man
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My MS is severely damaging the vagus nerve, it controls the mechanism that makes all of us breath, our heart to beat, out intestines to work and so on. All of them are failing, it is for this reason that I was given my friendly ticking clock. The damage can’t be cured and they have worked it out, by the speed of it’s progress. If I have a bad flare, they could all give up tomorrow. I am actually well past my original expectancy, thanks to being given chemo, before it, my progression was meteoric. Like you, I just make the best of whatever time I have, it’s all about living for the moment, not worrying about tomorrow. 😀
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Yikes! How spooky!!! It sounds almost as if your body is trying to sleepwalk? Though, since your mobility is compromised, you can’t, so it’s waking you up instead? Such a bizarre experience!
Are there any ties between MS and narcolepsy? The other parts (the sudden lapses) sound similar, and I’m curious. Since the MS already compromises muscle function, you wouldn’t notice any of the potential muscular symptoms of the narcolepsy.
Have you thought of using flameless cigarettes? I know they aren’t the same… But then you could get the same oral sensation and the nicotine, without the fire. I’m just worried that if another sleeping attack happens while smoking the chances of something catching on fire are pretty high. I completely understand your reasoning for wanting to smoke, I just don’t want you to get burned to death! Just a thought if these “sleep attacks” keep up I suppose.
I really hope these vitamins work for you 🙂 My mom had something similar going on (not anywhere near as bad) with her eyes, and started taking an eye vitamin. The next optometrist visit the doctor was stunned to report that all damage was actually gone! If this one you’re trying doesn’t seem to help, let me know, and I can get the details (what was wrong with my mom’s eyes, what vitamin, etc) from my mom! I just have bad vision, and it’s annoying enough on its own, so best of luck!!!! ::fingers crossed::
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I did wonder about the sleep walking, but why now? I’ve never done it before.
I googled your idea about narcolepsy and actually it does appear with MS, if the lesion are in the right place. If it happens again, I will call the doctor as it was really strange, one second awake, the next gone. I was kind of hoping someone would just comment oh this happened to me, don’t worry, I did x and y and it was over. Oh well.
I do already vape, I just don’t use the system that you will know. Mine are connected to my PC’s and runs off the USB, that way, no having to remember to charge the batteries. I have just always kept the cigarette box in the kitchen filled out of habit. I could set one up through there, but it would have to be the battery kind and I’d also have to remember to fill it, but better than having a fire. On the good side, it is the reason I smoke in kitchen and not the bedroom, there are no soft furnishing through there. If I did drop it while asleep, it would just smoulder it’s way out.
I’m not often hopeful about vitamins, in my experience, including all the ones my doctor put me on, nothing ever changes, but I do have hope in these. It’s good to hear your Mum had great results from the ones she was on, it actually builds my hope levels even more. From what I have read as a follow up, there are a limited number of vitamins the eyes need, the trace ones, are already in my others, so hopefully, I have it covered. As I said, I will update as time goes on, fingers crossed, I can do as well as your Mum, but I think that might be too optimistic. 😀
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Bloody hell Pamela, do you not have enough on your plate?! Seriously though, I understand the impact sleep deprivation can have on a person having gone through it myself with a condition called CRPS (Complex Regional Pain Syndrome) following a fractured elbow earlier this year. This condition pales into insignificance compared to what you are experiencing but I realise that constant pain + lack of sleep is not a great combination.
Love your attitude around happiness and long may it continue!
:-))
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I think pain may be playing a part in all of this, and I totally agree, if you don’t sleep properly, it makes everything worse. One of those vicious circles with no escape. I haven’t fallen asleep in the kitchen again, but once more last night, I woke up twice, sat on the edge of the bed. I’m just hoping it will settle down, if not, I guess I’ll have to have a word with my doctor, again.
I .hope your elbow is fully healed, as I wouldn’t wish pain on any one. (((Hugs)))
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Don’t worry about me. My accident happened at the begining of April and sometimes I impatiently feel progress is too slow but CRPS needs a lot more research and treatments vary in effectiveness from person to person. I realise your reluctance to involve too many medical professionals, however I think this time it may be wise to have a word with your GP.
Take care.
:-))
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