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…….

Surely doctors should show some humanity

I know that many of you were expecting yesterday that I would give an update as to what happened at the hospital, sorry if I disappointed you. Yesterday’s post sort of took over, even though it was started before I went to the hospital, and completed on my return, the break didn’t interrupt the words. It’s hard to fight against something that is so determined to leave my brain. Anyway, to be honest, there isn’t really anything to report. I was back there basically to report back on the success or failure of the nebulizer and steroid inhaler. I am so bad with names, as I am sure the doctor did introduce himself, but I failed as I so often do, to take it in. I have seen him before, it’s a couple of years ago now, but our paths have crossed. My memory of our first meeting had him fixed in my head as one of those doctors who treats you as an idiot, and gets angry when you fight back. Our second meeting, yesterday, was totally different. He was pleasant, rather smiley and even friendly. We discussed the improvements that I had found and my concerns about my oxygen saturation levels. He was more than happy to go over them all and has put my mind at rest over the dramatic and sudden drops that I had come across. He said it is quite normal for such things to happen. Apparently they aren’t totally sure what causes them, it could be something just as simple as a blockage, which when you cough clears, or as my theory put together, a spasm inside my lung. Basically, as long as they come up again, there is nothing to worry about, but should it stick at a low level, then action should be taken.

When I was last there, I had seen on screen that my oxygen levels were settled at 93%, which had matched with the levels I had found on my monitor at home. I hadn’t realised that throughout the time that I was trying to blow into their machine, failing all the time to give them the consistency required, that that machine was also measuring them. That one had actually read the 91% that I discovered at home last week. So the dip I was seeing wasn’t a dip at all. When he told me that, he started going on about machines I might have seen online that would force oxygen into me when I was asleep. I told him I hadn’t, but I had seen them on TV. It was one of those moments that I love when I don’t give doctors the answer they assumed I would. I got the impression, that he thought that I was pushing to have oxygen at home, I wasn’t. Almost everything that he said from that point on was followed with the words, “but as a smoker, you can’t have oxygen at home.” He was watching me closely for some other response than the one he got. I told him quite blankly, “I know that”. He kept on saying it until I told him “stopping smoking isn’t going to help me, I could give up today and my PRMS could stop me breathing tomorrow.” He had to agree with me, as that is the blank truth, but he did try a couple more times. Considering that Dr. Anderson, my consultant, didn’t mention it even once, his persistence, was rather annoying. I believe that Dr Anderson, along with every other Dr I have seen in the past 10 years, understands my position and respects my views on it, for some reason this guy doesn’t. Just as he did last time, he suggested that I saw my Neuro, so once more I went through the futility of doing so, once more he had to agree, but seemed pleased that even though I wasn’t seeing him, I am seeing the MS nurse.

I hadn’t received the answer to my question about the safe levels of oxygen saturation, but it was Adam who asked it again before I had the chance. Apparently, the level to start being concerned about is 88%, but only if it is consistently at that level. He said that confusion is probably the best measure, if I am totally lost and not making sense, then going to the hospital for a short stay where oxygen can be given, is a good idea. He then, of course, had to add in, that during my stay the would keep me away from the cigs, and that I wouldn’t be able to continue on the oxygen at home if I wasn’t off them. I had to keep my cool at that point, as clearly he had a script he worked off daily, it was just my turn to hear it. The one thing he went on to explain partly for me, but I think more for Adam, was that many people can actually continue to live even when their oxygen levels are as low as 70%-75%. As our bodies weaken, we actually become more efficient at picking up on every scrap of oxygen in the places it is most needed. Healthy people; are actually really bad at it; and in effect, actually waste most of the oxygen their lungs take in, but as our lungs weaken and time passes, we learn to be far more smart about not wasting it. The result is that low levels may distress those around us, but our bodies a perfectly happy.

I don’t know why, but I thought that once they were happy that things had settled a little, that that would be it. I sort of had it in my head, that yesterday would be the last time I saw them until I felt that things were changing again, I was wrong. He actually asked me, how long I was happy going it alone, before returning. I wasn’t sure at all as to what I should say, so I simply said, six months maybe a year. He gave a sort of rye smile and said, “let’s make it four months”. I hate it when doctors do things like that, give you the impression that things are going well, then throw you a curve ball, and shattering it. For him to want me back in four months, sort of says he is expecting things to get worse and for me to need their input that quickly. In some ways, I don’t know if there isn’t much of a point, in returning to see them at all. From what he said, that unless I start having, infection, after infection, when they would start me on a long term antibiotic, there isn’t anything they can do for me. The only medical intervention available is oxygen. Something, that I will never get at home as long as I continue to smoke, and as I have no intention of stopping, I won’t get it. He has also put me off going into the hospital for help, even, if I am having really bad problems. Why would I want to go there and be badgered all the time about my smoking? He even gave me the impression that they would be forceful about stopping me while I was there. All he has done is to make me now feel that I am on my own with this one. Despite the fact that they confirm every time that my lungs aren’t in that bad a condition and that it is my PRMS, that is causing my problems, that they are still going to treat me as though my cigarettes are the biggest issue, when they’re not, my PRMS is.

I understand that cigarettes are bad for me. I am not a total idiot. What I don’t understand is, if it is a clear fact, that the damage they have done to me is limited, and it is more than likely, that my PRMS is going to be what kills me, why should I stop smoking? I understand why a doctor would spend their time trying to convince someone, who has a possibility of a good normal life, to stop, that makes sense. How is it a good use of their time, to try and get someone who is chronically ill, dying in front of their eyes, with a highly limited life expectancy, a life that they will spend in pain, to stop? To me, that is not a good use of resources and probably even cruel. Smoking is one of the small enjoyments, that I have spread throughout my day. There are times when I believe that you have to look at the bigger picture. When someone is housebound, living all the time in pain, has limited contact with normal life, and has no possibility what so ever of recovering, to try and take something that they enjoy and doesn’t have the time left to do any greater damage, just doesn’t make any sense. To me, it is as mad as telling someone who has advanced incurable lung cancer, that they can’t enjoy a single glass of wine each day, as it might damage their liver. Clearly, every doctor has to do their job. Doctors who specialise in the care of lungs know that cigarettes, right now, are the biggest danger that lungs face for most people. Being blinkered and persistent in their goal, might be part of being a good doctor, but it also makes you a poor human. There is a point when you have to put your chosen career to one side and let your humanity in.

Right to the end of our consultation, he was still trying, and even started talking as though for some nutty reason, that I was going to come home and actually try to stop. He actually turned around to Adam and said that every cigarette in the house would have to be removed, that anyone, who might bring me any, should be told, that they weren’t allowed to, under any circumstances. I shut him down by saying, “I would just call a taxi and ask them to bring them to me”. He looked dumbfounded, shook his head and said, “I never thought of that one”, then turned to Adam and said “This one will need watching, she’s a sneaky one”. No, she’s not, she’s just a truthful one, she’s not going to give up smoking, no matter what anyone thinks.

Please read my blog from 2 years ago today – 10/11/2013 – The pain fantasy

It happened again last night, I was sat there enjoying the TV and my nightly gin and tonic, then suddenly the pain grabbed my side just as it did the night before and just like then it lasted only a few minutes….