I received one of those automated phone calls a couple of days ago. You know, the ones, with this semi-automated voices, that spurts out instructions, for you type into the keypad. I knew I had a hospital appointment this month, but I thought, that it was at the end of the month. It turns out, that I was wrong. My appointment is on Monday morning at 10:45, not the perfect time, but hopefully, it won’t work out too badly. When the phone rang and I heard that voice, I have to admit, my heart sank. I fully understand why organisations and companies use them. As an ex-operations manager, I could have seen me selling it to the company as a great way to save money. That doesn’t mean, I have to like them. I have to admit, that the first time I received one from the hospital, that I was more than just a little surprised. When you think of the range of patients; from children through to elderly; including a wide range of disabilities; and mental issues, it surprised me. Instead of saving work for the admin staff, I can see how it could very easily, actually cause more work, especially, from those who didn’t even know that the hospital might call to give them a reminder, in the first place. I can imagine, quite easily, a large number of confused and even distressed people calling back, thinking that their appointments were being either changed or worse still, canceled. When people are either confused or distressed, they take time to handle, to calm down and then to explain to, the purpose of the call. I know this very personally, and so does Adam, as I am no exception to that rule.

I decided last night, that as my appointment is now a lot closer than I expected, that I had best do a few more tests with my oxygen saturation meter. I mentioned a few days ago that my levels appeared to have dropped overall, but I was actually feeling better. Well, I am still feeling fine; most of the time, hence; my not racing to keep checking it; there was one test that I wanted to do; in the middle of the night, when I wake to go to the loo. I have often felt really odd at that point in time, but I just kept forgetting to the clip my meter on to my finger and see what was going on. Like most people, at three in the morning, all I want to do, is get back to bed and back to sleep. Last night, I actually remembered. At first, it all seemed fine, it started at 94, and dropped to 91, where it settled, just as it has done for the last couple of weeks. I often sit for a few minutes, past getting a clean reading, waiting just to see if it is steady or fluctuating. For me fluctuating seems to be the norm. It sits steady, then goes up or down a couple, then back to its settled point. I started watching because I have had some really odd results. I have watched it plummet, right down to the low 80’s, stayed there for two breaths small and tight breaths, then just as quickly, it went back up to 93, the then settled point. Last night, it did it again, this time touching 80 before it went back up. I don’t know what made me sit there for a little longer, but I did, and it did it again.

I found it kind of freaky, so I headed off to the loo and then went for a cigarette. I just wanted to sit there for a few minutes and think. I am a strong believer in not either jumping to conclusions or panicking, when there might be a logical explanation. It started me thinking about the problems I had the last time I was at the hospital when they couldn’t get a clean reading to their tests, for capacity and pressure. There was no consistency, something the nurse was expecting, it was just a shame the doctor hadn’t told her, she might not get any, rather than my getting exhausted by constant repeats. My COPD is mainly due to my PRMS, I do have emphysema, but it’s not that bad, on it’s own, I would probably be OK. When I had woken, I had been very aware that the intercostal muscles that had been in spasm, when I went to bed, were still tight when I woke. On top of that, I was also as normal, feeling tightness in my diaphragm. I know that the doctor had said, that inconsistency that the nurse had seen, would be expected with my condition, so could the figures I had just witnessed in my oxygen saturation, be just another form of the same thing? I have to admit, that I don’t know like a doctor does about exactly how lungs work, but I do have a reasonable level of understanding. I fully understand, that spasms, mean less air, on the surface a sudden dip, when I don’t feel any increase in the spasm doesn’t add up. I know, though, that there are small muscles inside our bronchi. If they went into spasm, I wouldn’t feel it, as there are no sensory nerves in there and it would cut my oxygen off dramatically. It would also explain the sensation of not being able to take a full breath, despite there being not a strong enough external crush to explain it.

So, OK, it’s just another of my theories, but without them, I would truly go mad. When you live in a world that is so full of things that are happening to you, and you don’t have a full compliment of medics, sat there waiting to answer your ever question, theories become important. None of us like not knowing what is happening to us. As I have said before, our symptom list is just the start. If I were to sit and just keep a list, of all the odd things that happened to me in a month, I would expect it to contain more words than my blog posts do, for the exact same period of time. Most of them, I just brush away. They aren’t just unimportant, they are totally irrelevant to anything, unless, they keep happening. I defy anyone to have something that keeps happening, not to wonder why, and to want to know, what it actually is. I would also give odds of a thousand to one, on them, being able to find the exact same thing, written up somewhere, book or online. It is one of those things that after years of living with chronic illness, that you eventually accept, theory, is often the only answer you will ever have. I gave up just asking my doctor, they rarely had an answer. I have tried telling them, some of my theories, just to have them tell me “it’s possible”. What kind of an answer is that? “It’s possible”. Tell me I am right, or tell me I am a million miles off but don’t tell me, “It’s possible”.

Theories, even if they are wrong, have a comfort value to them. They become my answer, if no one is going to give me a better one, then my answer will have to do. I personally, prefer them to constantly wondering “why?”, “what?”, or “what now?”. I guess that it is yet another form of self-preservation, as time goes on, I have and am still developing a lot of them. Over the years of reading what others have written, some have recognised the value of theory, others have dismissed it as a waste of time, claiming that facts are the only things that matter. Being a lover of statistics, I would say there is a value in both, as sometimes when you bring them together, what you find is a fuller, more rounded, and more understandable version of the truth. Ultimately, if they help us to make sense of our health, and we keep going back to see our doctors, then they can’t do any harm.

I don’t think there is anything worse than spending your life asking questions about yourself, that never get answered. On that one, I know that I am talking the total truth, as 20 years of trying to get a diagnosis, I have lived with too many unanswered questions. I wrongly thought that my diagnosis would put an end to asking questions, as surely, I had the answer, if only that had been the truth. Every day since that date, my questions have just grown and grown. Once more, it is the system that is working against us. When you can only see your neurologist once a year for about ten minutes, well you can’t go in there with every question you’ve thought of since the last visit. You can only go there with the most important to you, you might well have put aside something important, but that’s a danger we all have to live with. Clearly we can see our GP far more often if we need to, but they aren’t consultants who are trained in MS, their GP’s, family doctors, with a smattering of everything, not specialist doctors. The system pushes us into working things out for ourselves. Yes, right now, I am heading back to see my lung consultant, who I saw two months ago, but I doubt after this, that I will see him for another six months. Two months, six months or a year, it doesn’t matter, the questions keep coming. We have to find the answers for ourselves, there is no one else to do it for us.

Please read my blog from 2 years ago today – 07/11/2013 – Stretching too far

Well guess what happened this morning? Yep the mattress elevator got stuck again! Adam I actually were talking about the way they had attached it to the bed and both of us thought there were a couple of points that……