I realised a couple of months ago that I was no longer able to react logically to anything when it happened, for some reason, I have developed more than delayed reactions, it’s as though my reactions to anything and everything that really matters, is almost at a standstill. Two weeks ago, I wrote a post that was far more a case of writing about something that happened, than something that had feeling behind it. There was really no true feeling there towards something that most people would be scared of, but all I felt was nothing more than curiosity. Looking back, from the very first time I found things happening to me at night that I couldn’t explain, I should have been scared by what was happening to me, but I wasn’t. At the worst, I was a little unnerved, but now, at last, my true feelings have shown themselves, and they did so thanks to another bizarre episode, and my favorite district nurse arrived to give me my enema this morning.
For those who don’t have a clue what I am talking about, I will fill you in briefly. About four weeks ago, I found myself for the first time waking at night sitting on the edge of my bed, without knowing how I got there, and unable to wake up. My head drops forwards and the snap will wake me, just long enough to lift my head up and then I’m gone again. I can go through that up to five or six times until I can actually stay awake. Due to the fact, I started wetting the bed a couple of months ago, any time that I wake at night, I get up and go to the loo. This whole palaver can happen up to four times on any one night and at its worst, 4 or 5 times a week. Then two weeks ago, the oddity that made me write my post happened. I had gone for a cigarette after I had been to the loo, one second I was sitting between puffs, the next, it was three hours later. I was doubled up in my wheelchair and the pain in my back was unbearable, I also felt incredibly sick. It was odd, very odd but I put it down as just one of those nutty things that happen.
As I said, delayed reactions, as anyone with normal reactions would have started worrying just because they kept waking up sitting on the edge of their bed, unable to wake up. I didn’t react at all, in fact, it wasn’t until the third night of it happening that I even mentioned it to Adam, and I did so just in passing. When I feel asleep in the kitchen, well I told him the next day, but again, I wasn’t concerned, as I said, it was an oddity, all I wanted was an answer and there didn’t appear to be one. Several people left comments with suggestions on my post, but the person who was or had gone through the same wasn’t there.
In the early hours of Sunday, once again I was sat on the edge of my bed, and once again, I went to the loo, but I didn’t leave the bathroom under my own power. No, I didn’t fall asleep sat on the loo, that wouldn’t have made me worried, that would have been explainable, well sort of, what happened was far stranger. I can remember going to the loo, even taking care to ensure my incontinence pad was correctly placed and that my dressing gown was tightly around me before I sat back in my wheelchair. I had negotiated the awkward twist in the bathroom, and there was just one push to take before I would be able to open the door. That was where I went to sleep. In mid-action, I went to sleep. Adam had heard me going into the bathroom as he was still up watching TV, he came through to see if I was OK after 15 minutes. The first thing I remember was when him talking to me, and the warmth of his hand on my shoulder, the bathroom was freezing. I had to fight to bring myself to a level of being able to talk to him and even then, I know I was totally confused and not with it at all. Adam was the person to bring me out of the bathroom.
On Sunday, well, of course, Adam and I talked about it, but what could we say, and I still wasn’t reacting, I was still just confused about the whole thing. No fear, something that would have been completely logical, there was nothing. Somewhere though in the back of my mind, I think it was beginning, because there was this notion that maybe, just maybe, I should speak to my doctor. When the nurse arrived this morning, I was so pleased to see that it was the nurse who had been the first one to come out to see me. I blurted out the whole thing, and as I did, the fear appeared and the feeling of tears that I was determined not to let out, as if I did, well, I don’t think I could have stopped them. The reaction, the feelings that should have been there all along, suddenly appeared. I told her things that I didn’t think I had thought about. The fact that I am scared of what might happen if I fell asleep when standing, or transferring to and from my wheelchair. The possibility that I might lean too far forward when asleep and that I could fall out of my chair or off the edge of my bed. The chance that I might actually start falling asleep during the day, and the dangers that could put me in, as I’m alone. The probability that I could find myself actually needing the panic alarm we had fitted. I even blurted out a theory that I haven’t the slightest idea where it came from, that I might have a lesion growing near my sleep center. Between us, I decided to phone the doctor.
Talking to the doctor, had exactly the same effect. He didn’t have a clue what was happening, but he did talk me into going to see my neuro, someone I gave up seeing seven years ago. I’d had enough of being smiled at and told to come back in a year. I’m scared. Not just by what is happening, but by what might happen, and the implications it could have on my life. My mind has been racing since I broke through to my feelings and my overactive brain that has been searching for answers and possibilities. I’m even wondering if this could be the answer to why my memory has suddenly become so bad, could I be blanking out, and therefore not remembering what has been said, or what I have or haven’t been doing. Is that possible? Or am I thinking too much and just suddenly desperate for answers. Well, I could have weeks to wait until I get to see the neuro’s. I guess I have a lot of time to theorise, think and now actually feel.
Please read my blog from 2 years ago today – 04/10/2014 – Posture failure
Two Rooms Plus Utilities 
Awe Full! Make a list of questions for the Neuro. Make sure Adam is there. If you get the smile and the non-answer don’t be afraid to ask why, or for more information. Get an updated MRI to see if there is anything new. Don’t settle for the polite response and you have been doing it long enough you don’t need things sugar-coated.
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I wouldn’t go to see them without Adam, in fact, I have been nowhere without him for years now. I need him, because my brain just doesn’t work well enough to ask or remember the answers I do get. I actually am really looking forwards to having a new MRI, it will be interesting to see just how far the damage has spread and where it is. I do realise now that what is happening is far from just curious, I do need answers. 😌
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Wow, that is a lot to take in, I hope the visit to neuro doesn’t take to long to come, along with the MRI if you have one. Hugs.
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I haven’t been for so long, that I don’t have a clue how fast they move in that department. If my memory is correct, it’s slow. I know that all departments can have up to 4 months to make an appointment so I wait and hope it’s fast. I read a report the other day that said everyone in the UK with MS, should have an MRI every year. So they owe me about 14 of them, as I only ever had one at diagnosis point, and it wasn’t good. I just hope I have some brain left. ☺
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This all sounds very frightening. I hope that the neurologist will give you some idea and that he will order the appropriate procedures.
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Yes, it is rather, now that my brain has woken up to the implications. I have my fingers cross that they don’t take too long to see me. 😊
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wow, that’s a lot to deal with. I hope that the neuro can get you some answers.
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Thank you. 😊
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The challenges just keep coming…so sorry to hear about this. I won’t tell you to be strong – you already are.
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💞
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Hi Pam,you know I read your blog every day but don’t always comment.In another life I was a ward sister so read because I’m housebound and also interested medically.Ive just realised I didn’t make anything of it,or search for reason either.After much thought I came to the conclusion it was because I spend much time alone and now I mostly accept what happens to me.Please see your man have the MRI and just refuse to leave until you satisfied.I hope it’s an early appt.I did wonder if you had considered cot sides?Thinking of you and sending love.Nx
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Thanks Nancy, I hope it’s an early appointment too, but this is the modern NHS. I have considered cot sides as I do need to be able to get up to go to the loo. I know I wear a nappy these days but if I can avoid being wet, I prefer too. If I start falling out when sat on the edge of the bed, then I will, but for now, I seem to be safe. 😊
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I hope you find the answers that you are looking for very soon.
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Thanks ☺
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A lot of what you’re describing sounds like me my junior year of college. Arriving somewhere and knowing well, obviously I had to take this turn and go through this door or pass this place, but ignoring the fact that you don’t actually remember *this* trip or set of motions.
Sitting in class (or standing, or talking to people, or eating, whatever) and turning into a literal bobble-head that you know looks ridiculous but damn if you could just bobble enough maybe you’d be able to stay awake. I knew I was asleep, but I also knew I was trying to wake up, and I couldn’t. Sometimes I couldn’t move.
And the numbness. Rationalizing that it’s just another thing to deal with, and you’ll make up for whatever you’re missing later. It’s not that alarming, but it is curious. Why is it happening? What is causing it? Could I trick it and win?
I hope you have a competent neuro who will hear you and Adam out. In my experience, it’s typically two – four months to get an appt with my neurologist… however, he takes the time to look at documents, statements, and agenda’s I prepare, and has an actual conversation with me about my treatment plan and what I want from it.
On the other hand, I was with another neuro for a brief period of time, and could get in to see him almost whenever I wanted. Convenient, yes; considerate and open, big no.
Based on the research I’ve been reading as of late, I’ll throw another possibility out – I’m sure you’re already considering multiple viewpoints, so here’s another. I wouldn’t be surprised if the memory, nodding-off, and losing-track-of-time problems are resulting from how frequently you started waking at night. If you’re up 5 – 6 times a night, at up to 4 – 5 times a week, your restorative sleep is shot. If that’s the case, I wouldn’t focus on all of the “side” symptoms, because they’re just more alarms for the main problem. Instead, you’d focus on figuring out why you’re waking so frequently (lesion or otherwise) and if there’s any way to mitigate and reduce that – possibly ask about a MSLT?
Carry on 🙂
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I have been in that situation you describe as a bobble head, but this is different as it’s at night not during the day. Why am I sitting up, unable to wake from what should be sleep?
Your totally right about my sleep patterns being shot. I’m a lot tireder as I’m not getting my normal 12 hours every night. If I get two in a row of sleep I feel great in comparison.
I suspect he will suggest as MSLT as narcolepsy is a possibility, especially if it starts happening during the day. All I can do just now is wait and hope it doesn’t get worse. 😕
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I wouldn’t jump to narcolepsy – although they are now realizing that acute onset is possible with brain trauma i.e. stroke, hemorrhage, and your brain is definitely under stress right? All narcolepsy is is being stuck in long-term sleep deprivation, not from sleep itself, but from the restorative kind; put anyone in that situation and they’ll all start showing the same symptoms. Hopefully this very ugly link works, but it basically lays out all of the cognitive effects of sleep deprivation –> https://books.google.com/books?id=OamEBnnNnfgC&lpg=PA105&ots=GLyjzl3nOX&dq=%20sleep%20deprivation%20symptoms&lr&pg=PA105#v=onepage&q=sleep%20deprivation%20symptoms&f=false
Also, one way to explain it happening at night would be a combination of automatic behavior, microsleeps, and sleep paralysis. Microsleeps would be you performing an action without you being aware of doing so; meaning you’re physically awake, but you don’t know you’re awake and can do any number of things that are typically “routine.” The microsleeps/sleep paralysis would come when your cognitive awareness of being awake kicks in, and suddenly your body decides it should be sleeping.
And if you already know all these terms, forgive my lecturing.
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Don’t worry about lecturing, I do know all those terms, but I’m not ruling anything in or out until I see my Neuro. Of course I read the internet and all the options, but that includes the good and bad options 🙂
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Pam, I’m another who often reads but doesn’t always post. How upsetting for you all of this is. I hope the MRI yields some answers & that your neuro is responsive to your needs.
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Thank you, I hope so too, for now all I can do is hope it doesn’t get worse. I need my sleep and I’m just not getting it right now.😌
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Hopefully the NHS will scoot you to the top of the list for your MRI, since they owe you!
I’ve been following you for about 6 months now–I was interested because I once worked for someone with MS. Lo and behold if I didn’t hear from her again, almost 30 years since having seen her! I forwarded her a link to your blog. She has no Adam, sadly. But what I’ve learned from your blog may help me be a better friend. Thank you.
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Thank you, and I’m happy to have helped even if it is in a small way. I hope your friend is doing well and that you get a chance to meet up with her again. 😊
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Thanks for the follow on my blog “Retired, Not Dead.” I’ve started reading some of your back posts and appreciate the efforts you are making to tell your story. My sister passed from MS and I live with some symptoms that haven’t yet added up to a diagnosis–just enough weird stuff to create anxiety. My very best thoughts are with you.
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Thank you, and thank you for reading. MS is wildly varied, so much that I am going through may not match you, or your sister. So many illnesses mimic each other, and it comes down to fine details to separate them. I had to wait a truly ridicules length of time for a diagnosis. Stay strong and keep badgering your doctor, if your not happy with what they say. It may not be MS, but if you feel something is wrong, there has to be something behind it. (((Hugs)))
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