I awoke this morning with the oddest feeling. It’s not the first time I have felt it, and it never stops being unsettling whenever it appears. I woke at just after 6 am, thinking that I must need to go to the loo, as I often wake around then for that reason. Before I even sat up, I knew something was wrong and I decided to lie there for a moment while I tried to work out how I was going to move. The best description I can put to it is to say, that I felt as though I was going to pass out. I was sort of giddy and light headed with a really strong feeling that unconsciousness was a second away. It isn’t just a sensation that I would say was just in my head, it affects my entire body. If your limbs can feel dizzy, well that is how I would describe them. Light, tingly and unsettled in any position that I place them. They are heavy and move in jolts, and once motionless, the feeling of movement continues. I have been hit by that feeling frequently, but I have never felt it start when I was lying in bed.
As I said, I thought that I had to head for the loo, so I had to get up. That movement, to sitting on the edge of the bed, caused my head to swirl in a way that left me nauseous, and with a desire to collapse, instantly. It was actually a very desirable feeling, I know that sounds nuts, but I truly thought that if I just did, I would feel better. Once I was on the move, I became aware of this racket going on in my head. I would describe it as a mechanical whirring, it wasn’t tinnitus, I’ve lived with that for years, that is in your ears, this was in my head. I made it to the loo in my wheelchair and quite honestly, I don’t think I have ever been so grateful for having it. When I got there, my bladder refused to empty. That too happens quite often, but as I was feeling so bad, there was no way I could manage a catheter. All I could do was return to bed and hope for the best. Another sign of how bad I felt, I didn’t even consider have a quite smoke in the kitchen.
Before I knew it, the alarm was telling me it was 8:30, and time to get up. I don’t remember going to sleep, getting into bed yes, but going to sleep no. Two and a half hours further sleep had changed little. It wasn’t quite so intense, but it wasn’t better. I sat here for about half an hour, answering my overnight tweets, then went for breakfast and to go through my morning meds. By the time that was all done, I actually felt a lot better, but it didn’t last. By 11 am, I was once again not feeling myself. I have lost count now how many times I have gone through something like this. I would have called today exceptional if last week hadn’t supplied me with a far worse example, I just didn’t write about. I often find my body being taken over and my mind filled with intense noise, confusion and a desire to pass out. It doesn’t just happen only at night, but sometimes, it just appears out of the blue during the day, without any prior episodes that day. I know that I have mentioned it a few times in the past, and I also know that if Adam had seen me this morning, he would have been worried, just as he has been in the past, so clearly I equally look wrong.
This is where I award myself, the prize of “idiot of the year award”. I can’t believe just how stupid I have been, especially as I now know that I have at my fingertips, the instant cure, and I could have saved myself numerous hours of hell. I honestly never once put two and two together, and worked out that the root of my problem is my COPD. Whether it is my PRMS causing spasms I’m not overly aware of or just my Emphysema, I don’t know, and quite honestly it doesn’t matter. What matters is my oxygen levels, yes it is that simple, lack of oxygen. The cure, well take your pick, I have a nebulizer and I have inhalers, all of which would have helped me. Not once have I ever thought of checking my levels or to use those meds as a way of curing faintness, hence the “idiot of the year award”. I do have one other excuse, other than stupidity, my PRMS does cause both dizziness and nausea, the very symptoms I have been putting the blame on.
I guess that it is because I have had Asthma all my life, that I didn’t think of it. To me, you only use your inhalers, when you can’t get your breath when you are literally gasping for air. I haven’t been gasping for air, that only happens when my chest closes down on me and getting air is painful and it hasn’t been. In fact, I now always breath on the shallow side because of my diaphragm being tight all the time. I have been keeping my oxygen monitor in the living room, so it hasn’t been at hand at night, nor have I thought about using it when I feel like this during the day. It wasn’t until it came back at me this morning that I first thought of checking it and there it was oxygen down at 88% dipping between that and 84%. I don’t know what made me think of it, but I went and used my nebulizer, my normal of 91% returned. I have been sticking to using it twice a day as a stabilising medication. I had been told that I could use it as often as I needed it on top, but again, I’ve only been doing so when gasping.
In fact, if there is a stronger award I could think of, I would award it to myself. I just can’t believe that I have been living like this, when if I had a brain that engaged with facts, I didn’t need to. Somewhere in my muddled head, I quite simply haven’t been thinking straight about any of it. From here on in, I don’t care what time of day or night it is, I will be using my nebulizer, rather than wishing I could just pass out.
Please read my blog from 2 years ago today – 13/04/2014 – There is no place like home
Two Rooms Plus Utilities 
I think that, particulary with chronic illnesses, one does not always think straight even if one’s brain is *supposed* to be 100% functional!
You remind me of when I woke up to find my husband not far from coma. Thinking that it was yet another bout of severe hepatic encephalopathy, I called for an ambulance to get him to hospital.
When the paramedics arrived, they did a blood sugar test, found severe hypoglycemia, and after a glass of sugar water he was instantly much better.
It had not occurred to me to measure his blood sugar – yet I knew that he had diabetes!!!
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The similarity is strong, I guess at times we ignore the simple, out of the fear of the worse, or in my case, our of fear of the simple. I guess I just get used to things as they built, and forget there was an answer at all. On the good side, I at least woke up to it and I have the answer going forwards. And your husband who is clearly scared of losing a much loved husband. (((Hugs)))
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(((Hugs))) right back 🙂
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Being as sick as I have been, I knew I was having oxygen issues. I don’t have a nebulizer but rescue inhalers. I’ve made sure it was always in my pocket, ( I don’t wear anything without pockets). I know that feeling all to well. You’re not stupid! With all your body is putting you through, how were you to put it together? I’m just glad you did..😀
((Hugs))
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Actually, I think that holds a lot of truth in it. I listen to my body, but when it shouts loudly like that, I do sometimes get lost in the noise. As you said, at last I have the answer and hopefully, I won’t need to just put up with any longer as I have been.
I hope things are better with you this week (((Hugs)))
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You are so sweet. I do feel better this week. Thank you for asking. Not as sick. And I lost 13lbs which makes it easier to move around. Down side is I’m even colder to the bone if that’s possible. Lol..good thing I’ve always been about layers! I hope you feel better today and can breathe!
(((Hugs)))
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Another great and introspective post! Everyone here is just awesome. I also agree that particulary with chronic illnesses, we do not always think straight.
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Thank you, I’m glad you enjoy my posts and those who comment. We don’t always think the way others might, but when your body and brain are battered continually, it isn’t surprise, we land up kick ourselves. Over and over and over…….
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Too true.
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I’ve also had asthma my whole life (well, almost, I was diagnosed at age 5), so I only use my inhaler when I’m gasping or having having asthma symptoms. I wouldn’t have thought of using it for those symptoms either… so don’t feel that bad about it!
At least now you know that those symptoms mean a quick puff of an inhaler should help instead of having to just suffer through them for hours.
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Thank you, it’s good to know that my thinking wasn’t as confused as I was at the time 😀
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You aren’t an idiot.
What you described sounds much like vertigo. Not rotational vertigo where you see things spinning, the motion vertigo, where you feel odd in your body and it feels like you are moving…especially the part where you said you stopped but felt like you kept moving. I get that all the time.
My tinnitus is not always in my ears, it feels like my head is buzzing…vibrating.
You aren’t an idiot, something new happened. You didn’t put it together. I wouldn’t have. I would have thought vertigo. You really described what I go through often. I also have full rotational vertigo, but that doesn’t make the motion vertigo any less real.
Sometimes I feel like I’m dropping down an elevator shaft. It is so strange to feel like you are falling and you aren’t.
I’m so glad you figured it out and can take care of you.
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Sorry to hear you to have something similar, it’s highly unpleasant and not something I would wish on anyone. I do wish that I had worked it out sooner as I said the tools have been sitting there and I have gone through weeks of this without even considering it. I’m lucky, I have the answer, something that makes it go away, I hope that you either do, or already have.
Take care 🙂
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I don’t, but it’s ok, I’ve been dealing with it for years. I have bilateral hypovestibular function. Suspected bilateral autoimmune inner ear dysfunction. The tests aren’t conclusive about the autoimmune, but my doctor’s think so. It’s ok really. I have good spells. I’m so glad you found out what was causing yours.
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Just shoot me now for being so stupid, of course you do, I read that in your blog. Sorry as you know from what you have read my memory isn’t what it once was. That’s why I am always so hesitant about leaving comments or mentioning anyone else’s conditions when they leave a comment. I am almost guaranteed to get it all wrong. Sorry for being so thick 😦
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YOU ARE NOT AN IDIOT!!! EVERYBODY HAS DONE THAT,EVEN THE HEALTHY. YOU TYPED” I’VE BEEN WITH ADAM MY WHOLE LIFE”. THAT SPEAKS VOLUMES FOR YOUR LOVE FOR HIM.
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