I nearly did it this morning, that alarm sounded and I didn’t move. I lay there after turning it off for a couple of minutes then pulled myself up to sit on the edge of the bed. Even there I wasn’t sure as it took me more than ten minutes to put my cloth on and as I pulled up my last sock, I was still thinking, you could just go back to sleep. There is clearly something deeply set inside me that says I have to get up, I have to be active at the time of day that day starts for the world as I am part of it. I can’t believe just how hard it is to say “Sorry world I’m going back to sleep, I need it”. I do know that a large slice of it has to do with making sure that during the week Adam is up and out for work, something I have done throughout our marriage as getting up is something he is really, really bad at, but today is Sunday, there is no work. Programmed by my family from birth that having a lie in was something we as a family didn’t do, that there was always a reason to be up and if you didn’t have one, they would create one. Mind you, I also don’t remember those arguments so well documented on TV between teenagers and parents. Both my sister or my even older brother, like me just dutifully followed the rules and got out of bed, arguing back, wasn’t allowed ever. Mind you, I don’t even remember talking back to my parents at all, or even talking unless being spoken to first. Victorian rules ruled and personally, I don’t think that was such a bad thing. I actually only remember being able to sleep funny hours when those hours were created by my work. Ah that great god of life, work, it really does have a lot to answer for. If we had the money for Adam to not work, well I honestly think my world would change overnight and lie ins would become part of normality, not a horrific argument between, mind, soul, body and heart. I doubt even then that I could do it every day, but at weekends, I might just enjoy it.
When I was taking the steroids last week, I had to have something in my stomach before I took them, Adam took on the role of making me a slice of toast each morning. I am not a great lover of what most would call normal toast. I totally hate it when someone puts marg or butter on it while it is still hot, as that just makes soggy warm bread. That first love/hate was easy for Adam to achieve, in my opinion he is world class at letting food go cold, but I didn’t push my other likes and just ate what was there. I have since then had an urge that I haven’t fulfilled until this morning, proper breakfast toast. Yes, there is a recipe for breakfast toast and I think my Mother created it. First burn your toast totally, there should be nothing other than black to see. Then let it go stone cold, and only then cover in salty butter and thick cut marmalade. Then cut the toast in two and place your knife between the two outer burnt sides and slice in to form a pocket, now spread butter in there as well. There is something about the combination of salt, carbon and marmalade that makes it not just nice but to me moreish. Mind you, it might just be that my Mother was such a bad cook that her toast just seemed wonderful in comparison to everything else she served up. Either way, it is one of my comfort foods, something that when I don’t feel great I treat myself to as I know without a doubt that it would be heart-attack country if eaten daily as we all did as children. With the pain in my chest, today felt like one of those mornings where I needed a cuddle and there is nothing like childhood food loves, to do that with style, even if it leaves my kitchen filled with smoke and the entire house smelling of it. I don’t remember it, but with 6 of us in the house all having at least two slices every morning, the kitchen must have been like going into a cave each morning, probably another reason that we had breakfast in the dining room.
Yesterday, there seemed to be a really good improvement in my chest. My coughing was more subdued and I didn’t feel as though I was having to fight through layers of fluid to just fill or totally empty my lungs. Lying down was still an issue, they didn’t like it much, but still they were better, all in all, I had a bright view of what I though the next few days might hold. Overnight I was up twice and on both occasions I took a dose of cough mixture that calmed things long enough for sleep to take over again. Waking this morning to find that just breathing was a painful process, did come as a bit of a shock. It was as though my ribcage had locked and each breath was a gradual stretching process, slowly allowing more and more air in. My throat once again has a tight achy feeling which reminds me just what is wrong when I take anything but a slow controlled breath. I can only guess that I was coughing more than I was aware of last night, as to feel like this, I would have expected hours of continual exertion. Everything is ticking over just below the level that I would think of calling the doctor again. Yes, I am still coughing stuff up, including the watery liquid, but I don’t have that crackle and rattle all the time any longer, just during and for a few seconds before I cough. The crossover of conditions is clear today as well, as I know without a doubt that the pain throughout my body is down to my PRMS and my Fibro, neither take well to having disturbed sleep. There is no mistaking the deep muscle ache and fatigue, nor that feeling that my body just wants to collapse in a heap.
Thanks to a letter that arrived yesterday morning from my doctor, I am now taking even more tablets every day. When I was at the hospital they did some blood works and one of the things that they showed up is that somehow, I am deficient in calcium. If someone had asked me to sit and make a list of things that I might not be getting from my diet, I wouldn’t have even put calcium on the list. It doesn’t matter how bitty or faddy my diet ever gets, there is one thing that is almost always high on my list of foods, dairy. I eat cheese and/or yoghurt every day and normally in what I would consider good quantities. I have been careful to alway make sure I eat foods outside of dairy that contain calcium whenever available, as I was warned 15 years ago when they diagnosed my Fibro that I had early signs of Osteoporosis in both hips, but worse in my left. To be honest, I always thought the damage was most likely due to the fact that I had never thought anything of going on a 10-mile walk as I never owned a car or when DJing, dancing none stop for four plus hours. I wasn’t ever the type of person to be found just sitting down, I was constantly on the go, so my hips had been taking a battering from birth onwards, far more than most peoples. What I don’t ever understand is why every vitamin tablet I have ever taken, prescribed or not, is the size of a horse tablet. These things are the same size as my 600mg Gabapentin tablets, which get stuck in my throat all the time. I really don’t understand why companies insist in making these things so big, surely it must be as clear to them as it is to me, that two or three small pills go down easier than one huge thing.
It feels as though every year they have added something to my list of things to swallow. The only years I have gotten away with it, were the years that I hid from then and they seemed to forget about me as well. I am always reluctant to even speak to a doctor until I am sure that there is something wrong that I am failing to correct. My reluctance has actually grown thanks to this mess with my chest. I can’t help but draw the conclusion that if I hadn’t been told to change my diet, I wouldn’t have been hit by an exacerbation. Thanks to that happening, I am once again waiting to head back to the hospital to see the consultant as my GP feels that I need to be reassessed, which sounds like code for more tablets to me. I will wait to see what they have to say, but the desire to just slip into the background is growing again.
Read my blog from 2 years ago today – 28/06/13 – Playing Doctors and Patient
I have been mulling over something in the last few days that so far I have no exact answer to, but I still feel the truth is clearly here somewhere. As you know I spent years fighting the system to be diagnosed with MS, all the time convinced the doctors were getting it wrong and I have just been through it again with my COPD, although this one only took 18 months not 13yrs, both these things and a few more minor ones in the past, have built two pools of thought. The first is simple in it is…….