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….