I didn’t see it

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

Sundays are always here always start the same, quiet TV programs and snoring, strangely, I wouldn’t have them any other way. There are so many things that start out annoying us and land up being those strange little comfort zones, the places that if for some reason they vanished, would leave us feeling that bit poorer, that bit less at ease with life. Life somehow needs those constants, those things that happen without any effort or intention, but if they changed or ended, there would be an emptiness that nothing else could replace. I might complain at time when…….

Changing our health thinking

My pulse rate and oxygen monitor arrived yesterday and so far it has been an eye-opener. The maker says that it can be accurate within a 2% plus or minus range but even allowing for that, I have been rather surprised. A normal oxygen level is seen as anything between 95% and 100%, for one brief measurement I did hit 98% for a few seconds, but it didn’t last. I have been putting it on and off my finger at different points throughout yesterday and this morning and it appears my normal is between 90% and 94%. This morning I have been checking every 15 mins since I sat down here at my PC, it is solidly at 90%. The highest it has been and stayed there for a few minutes was 95%, but again that didn’t last for more than about 10 minutes then it dropped again. The best results have always been just after I have been up and about. The muscles in my chest often seem to be less tense during and after what is the closest I ever get to exercise, walking back and forwards through the flat. Every result that I have achieved over 95% were all straight after I had been on my feet. The longer I have been sat, the worse the muscles seem to get and down goes my oxygen levels in line with it.

Lying down is a great trigger for my chest muscles going into spasm and just before I go to sleep, I often feel really odd. I also have odd sensation in my face, hands, and feet. Basically, it is an intense tingling. What’s odd is that I get what feels like a twitch at the end of my nose and the triangle formed by my nose and mouth is the most intense area and often feels somewhat cold as well. There is often a buzz in my head and I sometimes even feel sick. I took the monitor to bed with me when I went for my afternoon nap and luckily, my body co-operated. My diaphragm and intercostal muscles started to tighten, the sensations quickly followed. Although it is on the edge of sleep I pulled myself back and looked at the monitor I had placed on my finger when I first lay down. The reading was 82%. I know that a one-off means nothing, so I settled down to repeat it last night. Nothing happened. I had to give up after 20 mins as I needed to go to sleep, but it was the first thing I checked when I woke to find it was at 89%. Those are not good results in anyone’s book. Although the opportunity hasn’t appeared yet, I often feel sick during the day. I know that it is one of the symptoms that goes hand in hand with my MS, but I think it might be worthwhile testing during the next spell that occurs.

I have less than 24 hours of checks, but even if it isn’t as accurate as hospital monitors are, it still shows that what I believed is true, my oxygen levels are low and all over the place depending on the tightness coming from my spasms. It does though cause me one of those quandaries, do I tell the consultant what I have been doing, or do I just tell him how I have been feeling, as that is what prompted me to buy it? I know from experience some doctors really don’t like us doing things like this. They seem to see it as their job and not something we should even be thinking about trying to do at home. Mind you, I am sure that they are more than aware of the fact that these monitors are now available and at a price most people can afford. That though doesn’t make the answer any easier.

The monitor of course also shows my heart rate, not that I think there is anything wrong with my heart, but it has been just as interesting seeing what it’s results have been. So OK the results could have been better, everyone’s could be better, but taking into account that I have spent the majority of my life sitting down for the last 10 years, a resting heart rate of 84 – 88 doesn’t seem too bad. What I was impressed by though was how much I could make it fall by just using my relaxation techniques for a couple of minutes. I have brought it as low as 78, but it jumps back up almost as soon as I stop, it’s not as though I really needed any proof that it’s works, as I knew that anyway, but there is the evidence if it was needed by any doubters. I think it could be quite interesting to test that one on a longer time scale as I really wasn’t looking at it when I was lying down. As you might have guessed, I am rather taken by my new toy. I really do love anything that measures, quantifies and proves anything. It could be why I so loved my last job, working with stats and building computer programs that made getting those results fast and efficiently, was right up my street. My analytical nature has been limited to my body for the last few years, so having a tool that helps, just makes things more interesting. I wonder what I could find out there if I looked?

I am sure if you asked a doctor that they would say that none of these monitors that you can now buy online, nor any of those health kits, are a good buy for anyone. I understand their concerns, as without the knowledge and research behind what the results can really mean, could cause a lot of distress for some people. I see things like the monitor as actually totally the opposite. When you know, I mean really know, once you have a diagnosis and you have spent time reading and absorbing medical sites as well as those intended for patients and their blogs. I believe gadgets actually put your mind at rest. That was what drove me into buying it in the first place. I have been feeling so ill and so wrong at times and my worry levels, which, of course, lead to stress, were high. I needed to know. Strangely, like most people, I don’t have a pet doctor in my cupboard. Not so strangely, doctors don’t like you calling ever thirty minutes to talk about your symptoms, especially in at three in the morning. If there are gadgets that can actually show you how whatever part of your body is worrying you, is working fine, how can that be bad. And if it shows you that you have something wrong that needs more investigation, well again that has to be good, as you are not blindly putting up with something that needs treating. I do understand their fears that we start self-diagnosing and then self-prescribing incorrectly. but that is a long way from what I am talking about.

I know that there are a lot of things that the conditions I have can cause problems with other areas and organs in my body. For example, COPD can actually cause huge problems with your kidneys. If there was a simple test that I could do, that would show if there was a problem forming and that I needed help, rather than my blindly going on until the damage is done, I could call the doctor. To me that is perfect sense, I think it would be to most people in this world who have COPD. By the way, my oedema isn’t even bad enough just now for me to bother taking my Furosemide. I am not a doctor or a nurse, but I am also not stupid, show me and I learn. With the medical system under such strain these days, I would have thought that any testing or even just monitoring, that those of us with chronic illness could carry out at home, that would mean we didn’t keep returning to our doctors, would sound like a good idea to everyone. I am sure that most of us are capable of taking our own pulse and blood pressure supplied with the correct and what are now cheap tools. I don’t know what the cost of a visit to our GP or even practice nurse is to the NHS, but I bet the amount of visits that many seem to have, would pay for them quickly. Rather than visiting the practice weekly, their visits could be reduced to monthly, or even reduced to just a phone call. On top of that, being in control of your own health, is empowering and that always makes you feel more positive about the whole thing.

I think the time is coming where we all have to start thinking about what we can actually do for ourselves, rather than what our doctors have to do for us. Yes, there will always be things we can’t do, but we are more capable than many of us think. It is not just us that has to accept the changes that technology has brought to our fingertips, doctors do as well. It is a matter of just getting used to it and accepting it as part of normal life. We and Doctors have done this in the past and we can all do it again. Think about it, when did you ever hear a doctor complaining that we aren’t capable of using and understand a thermometer, most other health monitors are no more complicated.

P.S. I have just been reminded that not everyone who reads is from the UK. I should have added this, an answer I left to a comment….

“In the UK we have the problem just now that our doctors are over whelmed. In some place you can’t get an appointment for up to a month. It has meant people presenting a the emergency department and overwhelming hospitals. Frequently some have had to close their doors for several hours to all emergencies. It is a huge issue in the UK.

The NHS can’t even find enough GP’s to cover some areas in the country at all. Reducing their work load is needed quickly as too many are leaving the profession as they simply can’t cope working 70 plus hours a week. Not to mention that the government now want’s surgery to be open 7 days a week instead of just 5. Something is needed and needed now.”

Please read my blog from 2 years ago – 06/09/2013 – Accept the mess

I really hope that I am not speaking in advance of something else going madly wrong, but my PC is now working, updated and back even better than it has been for months. I suppose all of us have that one item in their home that if it wasn’t there, they simply wouldn’t know what to do with themselves, well as you may have guessed this baby is mine. It really is total madness that as sentient……