If life were simple I guess that I wouldn’t be writing any of this, there is one thing for sure and that is there are surprises around every corner just waiting to make you sit up and think. I woke up last night around 4 am, I had that really painful spasm around my chest again, breathing had become more a process of gasping and I could feel almost my entire body was filled with pins and needles, with my pulse thumping in my ear and my right side. As I lay there bringing my breathing under control and waiting for my body to level off in it’s pain, I suddenly remembered that the exact same thing had also happened the night before. When I woke up yesterday morning I had totally forgotten about it, but waking last night and feeling it all again brought it back with total clarity. I couldn’t breath because of the pain and tightness of my lower ribs, they were so tight and painful especially on the left side, that the only way I could find breath, was to consciously breath with the upper half of my chest. It may sound stupid, but once I could breath I could think of just one thing and that was having a cigarette, I got up and headed to the kitchen where I made an effort to put both events into my head in a way I couldn’t just loose them again, by staying awake and by going over them several times. Once fixed, I slipped back to sleep just as I had the night before.
It made me wonder just how often I do wake during the night due to pain and spasms, all that I have simply forgotten as they broke my sleep for a short spell and then sleep took over again, pushing the event into the darkness. I do know that I wake from time to time for a few seconds, but I can only guess that may well have been many many more periods of pain that sleep has erased as unimportant. There is nothing anyone can do about spasms, I am just unfortunate that my MS discovered my intercostal muscles and seems to find it so much fun to play with. It has been months now since I last didn’t have at least just a tightness across the front of me and often around my entire body, the pain levels have been held by my medication and these short spells of intense pain have only one conclusion, to wait and let it pass, luckily it is years since any pain made me panic. The only thing I can’t make sense out of is why all of the pain and tightening in my chest increases when I lie down, even putting the mattress at different angles every night, hasn’t made as much difference as I had hoped, but it has helped. It seems that any position other than upright is enough to set things off, different nights seem to cause different things, there is never total relief.
I used to wonder why I couldn’t remember ever living inside a body that wasn’t filled with pain, but the answer came eventually, one that is obvious once you work it out. None of us go about our daily lives checking how our body feels all the time, we just accept it is there and it is doing what we expect of it, we only pay attention when there is something wrong. So maybe it isn’t so surprising that I don’t remember, as I never actually made the memories, I ignored it totally as I never thought that I would have a need for them. We just don’t appreciate ourselves when everything is working as it should, it’s only when it all goes wrong that we start to make mental notes for the future, just in case they become important. I have lived with this madness for so long that I now even ignore major events, just dismissing them as normal or a blip, then shoving all thoughts of it into the past.
I watch a program last night about ageing, it was another of those happy programs that made me realise just how doomed people like me are. They were once again making the point that to live healthily into old age we all have to take exercise, not just sitting doing simple stretches, but out there jogging and breaking a sweat, especially women if we wish to maintain our bone density. As someone who falls, on a regular basis, being reminded that I am now not only at the age where my bones are thinning but unless I exercise I am in great danger of breaking bones when I hit the floor. With the sort of exercise, they recommended now totally impossible, I guess it is just a matter of time before the first break appears, something I could really do without happening. Once they had made me realise how useless my bones are becoming they also showed the effect of being sedentary for a number of years has on your muscles, all of them not just your legs. Having hardly moved for 7 years I would expect that if they analysed my muscles, they would be well aged past their years and that is without allowing for the damage that MS has done to them. Some times I really get the feeling that I shouldn’t watch TV, especially programs that are clearly designed for those still healthy and young enough to make the difference that most need to. By the end of the show, I was feeling really useless, far more than I did before I started watching and without a possibility of a happy future, I would put money on it that they didn’t put the slightest thought for those of us who don’t have the choice or opportunity to make our future fitter.
I am 53 now, I used to always be told that I looked about 10 year younger than I really was, I know just by looking at myself in the mirror that is no longer true. My health is ageing me rapidly, something else no one warns you about, know one ever sits you down and spells out the side effects of something like MS. No one warned me that I was facing a future where every year was taking the toll of at least two and that isn’t just your body, it’s to your face as well. I see every new line, every new grey hair and every sagging muscle, thanks to my health I can’t do anything about it at all. For many women that is a major thing, my answer is try and not look, to pretend that I am still as young as I feel inside, somewhere I refuse to age ever.
Please read my blog from 2 years ago today – 01/04/12 – Death by misdiagnosis?
Two Rooms Plus Utilities 
:yes: Not always a pleasure…but certainly ‘a fact’…;)
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God, it’s all so depressing isn’t it? I try not to watch programmes like that anymore as they have that effect!! I watched an interesting one last night on Autism and people on the Autistic Spectrum, like Aspergers Syndrome (my son has this as well as Cerebral Palsy & other personality things). It also confirmed to me that most of the men in my life are likely on the Autistic Spectrum/Aspergers etc., among other things, how fortunate am I?!
Not had a good few days at all, as well as overdoing it with my son dumping the children&complicated arrangements on me, taking Francis to Cathedral for rehearsals etc., had massive row with him yesterday about it, with me losing it. John came back from Kent Monday afternoon, not very happy to be back, when I told him about son& the complications, he got agitated with me. Tuesday morning dawned, off to an ok start, but while I was out, son rang on mobile wanting to drop by as he’d finished a meeting, had hour and half to kill before school run, would expect lunch and I said ok, very distractedly, unable to really hear on the mobile, while on bus! Got back to find John had ignored home phone for above reason and flipped at me for agreeing to it, was my fault, son arrived, John stormed off and left me having row with son, who told me I was getting it all wrong of course!!!!
I then just went very eerily quiet (unlike me)and took myself off to bed very early, while John had sulked in the other bedroom. Today is somewhat better, but still an atmosphere as I can’t bring myself to chat as if nothing has happened, if I bring it up, likely to get annoyed and then will likely get blame for that!! John is trying to get me to break contact with son as he causes such chaos/conflict but I’m not prepared to then lose contact with Grandson, Francis, so it’s an impasse (correct word?)
On top of that my brother in Kent is driving me nuts with endless texts asking me questions about everything&everything, not having empathy/understanding about my health, no matter what I tell him. He tries to suggest meeting up in London, so I have to go there and find it exhausting, then though he has suggested it, tells me lots of dates he can’t do, due to going to pub/club/party/whatever, he works shifts so won’t give up his weekends. So, he’s blatantly saying, “you’re not that important2 but see if I can squeeze you in”, we have 2 other sisters in England, I don’t see but he’s close to, so they come first, as my Grandson does with me. Difference is, I try not to make it very obvious! The reason he fell off a train 4 years ago&had a very nasty knock to his head&lay on ground bleeding for some hours, before found, was he’s been out in “town”(London)&got last train home, very drunk. Though he was strange and not that empathetic before this(traumatic childhood, only 2 when Mum died)this became much worse after head injury. He is also in the habit of texting to arrange to phone me in the evening every 2-3 weeks, though he doesn’t seem to know why and when you answer, there is a deathly silence, you have to try&fill, I then get irritated, thinking, you wanted to phone me, I never suggest it! I find these phone calls very hard work now and dread them, it’s usually a Monday or Tuesday&have given up trying to explain that by the evening, phone calls are hard work for me, mentally. I actually told a white lie on last one a couple of weeks ago,(resorting to this now)I had planned to go out to cinema on the Monday night, my granddaughter was going to be here the Tuesday, so I said no, didn’t go to cinema in the end, but didn’t tell him! Was hoping he’s take hint&leave it, but no, he texted to say he would be off Sunday 30th and could call then. I felt I couldn’t get out of it, but to say I was done in was an understatement, as also ended up going to London last Saturday night with daughter-in-law, as son couldn’t go to concert and they had tickets. Strangely enough he texted sat evening to ask was I still available Sunday evening for the call, no end to it, so replied and said likely not up to it and turned mobile off. Then another text came to say he’d be off this coming Friday,(he works 2pm-10pm so cuts in to nights out)but would more than likely be going out (see what I mean about subtle)but would then be off next Monday and Tuesday, so I’ve ignored it. In the meantime, under duress, Ive booked tickets for us to go to an Irish show at a theatre for 26th April, he had suggested it but then gave loads of dates he couldn’t do, one was a drinking buddy’s party(he’s 41!)I suggested he come to Norwich, there’s quite a lot to do here and just got the grunt of “maybe sometime”, but it’s ok for me to make huge effort, then be laid up for days after as I’ve overdone it? I feel bad about this, but at the same time, I’m being taken for a mug in many ways? I will mention that the other 2 sisters must be noticing something as in 2012 they put on a weekend away in Edinburgh for his 40th and their 2 partners went too, found out the older sister, who’s very strong, hard&works as a social worker in mental health, had big row with her partner and ended leaving early on a different train. I don’t know of course, but think it must be something to do with him? He mentioned a few months ago that he hadn’t spoken on the phone to the younger sister for about a year, as she seemed to be “busy” or “not available”, don’t think this is a coincidence, though they see each other in person. I will be dreading Christmas now too as he’s made a real saga of exchanging presents, when I tried on an opening into it, when chatting, to say I don’t buy for anyone other than the kids&like it that way as don’t really celebrate Christmas. He was really funny about it, said he had more money than me, missing the point completely!!He goes to the younger sister for that few days and from Xmas Eve, endless texts about what time we&they were eating main meal, so we could arrange phone call. it drove me nuts, it was due about 4.30pm in the end, so put the day on edge, then after short while, said he had to go, as they were due to watch a TV programme that I don’t like!!!I despair. I think that once this London theatre/day trip on 26th is over, will have to make concentrated effort to put him off with the calls/meeting up, just unsure how when he’s so persistent??
Sorry for going on, won’t even start on sister in Dublin(learning&other difficulties)I don’t really have anyone else to discuss this with and you are a good listener online&have time(if not the energy)maybe it will help to get it out on here??
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