We all know what it is like when you get a silly idea into your head, and you just can’t shift it. I had one of those about a year ago. and it landed up with my purchasing an oxygen level monitor. I had it in my head, that my levels were dangerously low, and even worse, that every night, I was receiving increasing levels of brain damage. It always felt as though the change from vertical to horizontal, was making my breathing so much more difficult. At the time, I was waiting for an appointment at the chest clinic and the appointment, wasn’t come around quickly enough. As it turned out, firstly, the monitor didn’t actually arrive until a couple of days before the appointment, and secondly, the consultant told me that readings of 91% didn’t mean I was about to die, it could fall right into the 70’s and I would still live. I wouldn’t be energetic, but I’d live. Once I had had my mind put at rest, by the doctor, not the monitor, I put it to one side, grabbing it occasionally, but in the main, I forgot about it.

It actually feels like a long time since I last just sat here doing nothing, but with my oxygen monitor on. I used to do it occasionally, more because my eye was caught by it sitting beside my keyboard, than any other reason. In some ways, I probably should have used it more often and built a clear chart, that would make finding the abnormal easier, but I didn’t. So when over the last few days, when my abdomen has been creating pressure levels off my normal scale, I thought that I knew my oxygen levels would be low, but I didn’t have that much-needed chart, to be sure. I was getting reading from their highest at spikes of 93% right down to 86%, and one dip falling at 84%. All figures that I have seen before, just as I have seen all my differing heart rates, but I don’t remember a single one, with any certainty. It has made me realise, that although I have this tool, plus a few others, I have totally missed the opportunity, to build a picture of just what my lungs and heart are doing, or not doing.

When last summer I had a bout of pneumonia, I know that Adam was worried sick. I am quite sure that he was more worried about me, than I was, as he even took a week off work, as he wouldn’t or couldn’t leave me alone. The other day, Adam was looking for something in the coffee table draw, as he was scrabbling around in it’s overloaded contents, I spotted the instruction leaflets for my oxygen monitor. I thought he had thrown it away, after reading it. Clearly, he was still holding onto it, just in case, he has to put it on my hand and read the results, and clearly, it’s something that still worries him. I did think once before of keeping a chart just out of interest, but now I am wondering if the time has come, that not just for my curiosity, but for Adams future sanity, that such a chart, might just be a really simple and effective answer. I know from experience, especially from that dose of pneumonia, that I can tell him a million times, I’m fine, if his eyes can’t see that, he won’t settle. This might just be a way of giving him, some peace, and if adding on ten seconds to my morning meds routine, would do that alone, well it’s has to be worth it.

I think we, the chronically ill, often forget about what our partners see and what is going on in their heads. As I said, saying “I’m fine”, when “fine” is the one thing we never are, doesn’t mean anything to them. I have sought frequently for a way of convincing Adam, that I’m not going to keel over dead, in those five minutes it takes for him to go to the loo. It is one of my almost daily frustrations, especially at lunchtime, when he phones because the weather is too bad, for him to walk down the hill, to the house. Quite often our entire two-minute phone call is spent with me telling him, that I’m fine and trying to find a nice way of saying, I don’t need him to come home. There have also been numerous occasions when stopping him calling the doctor, has been just as hard. I have never really thought about it in depth, but that chart, might just in the future, be my answer. It also, might be the way of showing me, the pigheaded, “I’m never ill”, obstinate, single-minded, me, that, I actually do need to see a doctor, and now.

There is one fact that I can’t ignore and that is, that my health is getting worse, I’ve tried, trust me, I’ve tried. But it’s that very attitude, that has got me this far, but it is now the attitude, that makes Adams life harder. He knows all too well, that my left leg could be hanging off, with no more than a thread keeping it connected, and I would be asking him to fetch me a plaster. It works for me, but not for him. I have seen the worry on his face when I’m not doing too well, but it’s just my way to brush it off, as it’s my health and my problem. I guess that I had missed one important change, it’s no longer just my health, like everything else in my life, it’s now Adams as well. What I mean by that is. that I am now able to do less and less for myself, I have openly told Adam that I need help and why. He now monitors so much that I do and has taken over the rest of it, but I haven’t opened up a way for him to monitor just how well I am, other than to look at me. This would give him that opening, a way to be sure and to put his mind at rest, that nothing more serious is going on, that I’m keeping from him. After all, he doesn’t have x-ray vision.

Please read my blog from 2 years ago today – 25/02/2014 – I just don’t do

I really have to push myself today as I need a shower. I needed it yesterday as well but I just couldn’t find the strength inside me to get off my backside and sit in a small cubical. So OK it isn’t as simple as that, the big problem is the overall effort it takes and that horrid sensation of pin sharp water digging…..