I woke up with another stupid headache again this morning, I have noticed that it is almost expected when I have had a bad night with pain, not that they happen a lot maybe a once a week at the most. Last night I woke only because I needed to go to the loo, but when I returned to bed just like when I went to bed last night, my diaphragm was playing up to it’s fullest, as where most of my intercostal muscles. All my life I have found that lying in bed and not actually sleeping results in headaches, mind you in the past I would have been tossing and turning, these days I lie totally still. I know that I spent a considerable amount of time trying to relax, there is nothing odder than pushing yourself to relax to the point where it feels as though you are almost melting into the bed, but to still feel without a doubt my lungs being crushed by your ribs. PRMS is filled with odd things like that, where you somehow manage to have two total opposites occurring often not just at the same time, but in the exact same muscle. I remember really believing that there was something truly wrong with my brain when I started not only having extreme pain but total numbness in my legs simultaneously. I believed it so wrong that I have to admit that I didn’t once tell a doctor it was happening until long after I was diagnosed, as I honestly thought I had to be imagining it. When you have already had one doctor tell you in couched terms that you are a hypochondriac, well you don’t give them the ammunition. Strangely if I had told them, they might just have had at last the clue they really needed.
Night time is getting harder to deal with when it comes to the spasms in my chest, just like most spasms there can be ways of breaking them, sometimes by doing something just as simple as massaging the area, not that that is easy on ribs, but it can work at times. Of course, any movement of any kind is the last thing you want when you are trying to go to sleep, yes it might break the spasm, but it means I have to start all over again with the going to sleep and 99% of the time, the spasm reappears before sleep does. It really has become a case of who wins first, the pain as it is too much, or sleep because it is so desperately needed, the occurrences of the pain keeping me awake are growing. Just six months ago it was unheard of for me to have problems sleeping ever, every day it was the same, regardless of the time of day, lie down and I slept, that is still completely true on good days and nights, but let my ribs decide they want to play and sleep becomes something that takes time. When you are used to going to sleep within in minutes, to find yourself still awake 10 or 15 minutes after going to bed, well is odd. At night I don’t even have to look at the clock to know how long I have been trying as Adam always goes for his shower once I am in bed, I never used to hear him leaving the bathroom, but I heard that and him going back and forward to the kitchen as well yesterday.
Lying awake does at least have on the good side to it, it allows me to think without the clutter of life chipping away at me. I used to find that a bus or taxi journey was a great way for me to work out all sorts of thing, from my life to a problem I was having at work, as all those situations have you trapped in a place you can’t leave and there is nothing you can do but think. These days I don’t even get close to buses and taxis, but bed actually works just as well, apart from for one detail, I usually forget all about what I had worked out by the time I get up and a notepad, well it’s as bad a trying to do a massage. Luckily this morning there was something on TV that jogged my memory, so here goes with another of my theories, well it’s not a new one it’s an extension of what I posted quite a while ago. In brief, I had noticed that I wasn’t alone in living through hugely traumatic events from my teens onwards, in fact, the first symptoms I had were about a year after my son died, but I couldn’t pin down what it was, if anything that caused it to change from Relapse Remitting MS to Progressive Remitting MS, last night I think I may have moved a step closer.
I can with ease put my finger on the last relapse I had before Adam and I met, it was in fact brought on by a series of events, which started with my ex-husband moving to New Zealand with my daughter without telling me. At that time I was with a man that now everyone says they didn’t like, but at the time I couldn’t see what was wrong, I had blindly walked right into a situation I should have recognised but didn’t. He was totally self-centred and manipulative, but the first year was great, the second was when his true self started to show, in the third and final year when I decided to changed from being a DJ and someone who could introduce him to people he thought might help his career as a heavy metal bassist, he finally showed his true colours. I went through a year of hell and whilst trying to establish myself in a new career, I had what I now know was a flare, I was off work for 6 weeks, never had I totally stopped like that with a flare, I was stopped totally, just sleeping and breathing. His reaction was mental and it would take too long to write down everything that happened during that time and the following two months, but even his parents landed up apologising to me for the actions of their son. A month after I had found the strength to tell him to move out, he was still there every weekend with the excuse he was picking up his stuff. I snapped one day when he left and that was on the day when my friend Jake took control, I told him I wanted him out, so Jake packed all his stuff into his van and we delivered it to his parents home, along with the message that he was never to return. Not surprisingly I had another flare once I was free, but it was the last and at the time just like the one earlier that year, the doctor said it was a virus.
Adam and I met just a few weeks later and our story is well documented throughout this blog, life was wonderful and I didn’t have the slightest moment of stress in my life, other than when the ex-started stalking me until we decided to buy a flat. I have never owned any of the houses I have lived in, so the thought that I was responsible for paying a mortgage, or that if I were to be ill, something I knew all to well happened from time to time, that there would be no help paying the mortgage were if we rented they would pay the rent. It was just over a year after we moved in that I was suddenly ill again and the rest is history. I have been totally open to Adam about the fact that despite I love our home, I really wish we had never bought it, because of the stress I have felt ever since we did, I have lived constantly scared of losing the place and what would happen then.
I now believe that it is possible that the mix of events in my childhood and teenage years, followed by the death of my son all before I was 21, were the base reason that trigger my MS. Just like the build up to it starting, there was a build up to it turning progressive and that started the day my daughter was stolen from me, along with the wrong partner, the final stress of becoming a home owner and all that went with it, like rebuilding the interior of said house, well it changed into PRMS. I could be wrong, but it all fits so well and as I said before, I have spoken to others and read the stories of even more that really makes me think there could be something in this.
Please read my blog from 2 years ago today – 23/10/12 – Normal abnormals
Shopping day again, it seems to come round so quickly although it is once a fortnight not weekly. I am just waiting to hear the van outside and the noise of sliding doors, followed by clanging sounds as the green plastic boxes hit the pavement. I always hear it long before the doorbell rings, and to an extent I……