My new cordless keyboard is marvellous. I am really restricted in movement ability so being able to type up my thoughts is a luxury I have been missing. The cordless keyboard makes it possible if not pain free. Hands are slightly spasming. I have typed a little more than usual. In fact that has made me realise why I have had such little body pain apart from the occasional spasms and cramps. Oh and the times I have had to sit on the edge of the bed unable to sit back properly and the muscles pulled coughing. With this last 6 weeks being virtually continual low end of doing well enough to not have to wait hours needing the toilet, to have enough breath to do so, to I may need to prepare mentally for the ambulance trip and a hospital stay. It has been a challenge to eat a meal every day which has not been possible and I've been hungry quite a lot of the time. But I have had to meditate, prop myself up relax, wrists straight, fingers and wrists supported. It's funny how so many of these things you wouldn't notice unless being asked in this bullying way of the WCA to justify why you 'think' you may not be fit for work. Where you fool yourself into having illness behaviour that going out to work can cure.
I have thought I am getting better several times and had to work hard to relax, which may sound counter productive but the way my body has reacted to lying propped up is bad enough, never mind lying down. I have been working through a cycle of fear, tense muscles preparing to fight or flight and a body screaming out to release the tension but also biochemically conspiring against it. The more stress the worse the triggers set off the constant chain reaction of muscles involuntarily tensing. I have been training myself to keep releasing it, but it is often a tall order.
My own personal way of being able to relax on top of conventional medicine has been meditation. Because I haven't been able to use my old way into meditation I have been using guided meditations which allow me to sleep. Sometimes I sleep as the couple of hours play out on a loop and wake up when it finishes, only to have to use it again to go back to sleep, how worked up I have got and how breathless on waking I am depends if I have to sit up and use a neb as well. It has been boring and exhausting and I have had quite a challenge to have a laugh once or twice in between the more uncomfortable and serious feeling bits. I feel glad I am alone because there are only 3 people I could do this and not annoy them for a short time, only one of those is likely to be able to put up with it more full time.
Luckily I am not this bad for this long that often, or I haven't been since 2004, I have had a lot of other symptoms, overwhelming fatigue, painful muscles, bones, skin, joints, cramps, spasms, ear infections, chest infections, booby cysts, oh the foggy head....not as much a problem since the new heating system went in but does come and go a little when tiredness gets extreme. Sensitivity to light isn't quite as frequent a visitor either.
This is besides my point. I was enjoying the distractions with less restriction that helps me get through the long slow hours of being able to do so little without feeling like I may need to go to hospital and often the first word I think for the place is prison. I try to bypass the resentful thoughts of how can being able to do this imply I am fit to work. It is something that helps me recuperate without being so frustrated. I am trying to recuperate without feeling frustrated while every effort I make proves me fit for work and I am seriously unable to self care at this moment.
I managed to change my pyjamas a few days ago. I didn't have energy left to flannel wash. I had done the day before and did the day after. I haven't washed my hair in over a month and my body, it;s about 3 weeks now. I quite liked the idea of going into hospital for a couple of days so I can be clean. It just hasn't been safe at home. The fact I survive this proves to the DWP I am fit for work. I have to constantly stop thinking that way because I know it has the power to make me worse. I think the ones who put us through this know this as well and I believe they are cruel.
The thing that prompted this bit of writing was my letters in a Scrabble game on facebook reminded me of an ex-lover. \my relationship pattern was a disaster and it often took me a few years to get over the more love of my life ones, like ooh gosh in my teens there were several, in my 20's too, sadly my husband only felt like that the first couple of years then we had another few years that ensured I really didn't like him for a long time, till I forgave him for being as wounded a person as I was, in a different way also dealing with it in a different way to me. After all he did change my life in good ways as well as give me an opportunity to fail in love. I pined about him for years, then another man to pine for. I was great and unrequited love. Many men who I unrequited my love for then went on to an apparently successful relationship, which I admit at times made me feel a bit ferking put out, not quite enough to make me eternally pout but it made me wail more than once, why me?
I had a phase of the pre-fertility goddess ex good friend called me that, as 3 blokes who were well into me had already impregnated a girl before we met, some did it after, that way was sort of kinder but neither planned to hurt me. The one of the men I had the best relationship I ever really had, which lasted 3 months. It made me wonder if I can do relationships at all. I have had many short time best at the moment friends. I have some long time will be friends no matter how much we fall out at times and I have people I grew up with who may never be close to me again. I have worked through a lot of fear of rejection and I still am working through issues around that.
After the last disaster and I don't include the last two almost started but never really began but could have been proper relationships that would have seriously driven me crazy, even more crazy than the years of hibernation and coming to love isolation after first really not liking it. Yeah after that, I have properly made peace with being alone, so no doubt some dozy bloke will wander into my web soon enough and I will like him enough to have a go at relating again and maybe he will like me enough to have a bash at it too. That will take care of itself in its right time. It would be quite good if I had some more energy by then so I can take up a new keep fit regime, one with some tongue in cheek.
I have been able to relax a lot more successfully this evening and although moving about is strenuous at the moment still I feel freer and that makes a difference. Like I have said in latest blogs my emotional and mental health affects my physical health in a profound way, it can be enough to put me in hospital or not quite bad enough which ensures a lot of invisible but the the few who see, suffering for me. It is not seen so it seems it doesn't count. It counts to me but I am working on not constantly justifying that in my head and needing to share that, or resent the people directly affecting the conditions that go towards that. It has become a habit because the atmosphere of fear is such an epidemic.
I don't know what the truth of reality is, we are lied to and manipulated by our system, some heavy shit is going down in our lifetime. Lots of people are awakening to many different dreams with often similar themes opposing views clashing, old foundations crashing, I tend to think compassion is becoming more fashionable, desirable and accessible if hard work at times cos we have to suffer fools, including ourselves and forgive to set free. I keep forgiving you and me, any you who has shown me where my energy is stuck as they mirror my shadows to me reflected with a different story.
I may be at a point where I can get into a bit of well being a bit more often, it is practise makes me human...
Oh I didn't want to admit but we often talk the talk a long time before we learn how to really walk the walk of love not fear. We get called up on it or called a hypocrite sometimes because our words are telling us where we want to be, or too much of where we are. We are constantly in change even when we look the same. I am breathing much better. We'll see how I progress.
I said more for those who don't know me, yet many who think they do, really don't. Yet it is likely the ones who read this know more than some who maybe think they do. That is something I've been thinking about too. How opinions can be held dogmatically refusing to be swayed by another point of view, no matter how true either opinions have got...I think I have run out of brain steam now and my hands will enjoy a rest...ouch my feet are cramping...time to meditate again...smiles
Wednesday morning at 03.58 12th September....
tried to put this on ano0ther blog about health but after failing capacha twice gave up...You seem to apologise for talking of your health. I do too often, I just have again in today's blog but I don't like talking about it and it becomes the only thing I can focus on at times. I wish you joy in finding your well being...smiles
I suppose the non well being is an important thing in finding our yes well being and the journey of our life is much about the non bit as well...can;t ignore it but need to let it go...I don't know just thinking in type...
it's good to see you blogging again Lainy, though I've probably missed out on a lot of your blogs since Jake was born, so maybe you haven't been as quiet as I thought. Love your thoughts on "some dozy bloke" wandering into your web! I liked what you said about we have to maybe talk the talk for a while before we have the ability to walk the walk. Funnily enough I was thinking the same phrase about a friend I made quite recently, she's pretty good at walking the walk I think, more than a lot of people are, including myself. Sad you're not feeling so great, I hope you get a burst of inspiration and energy to lift you out of it for a bit at least. xxxx
ReplyDeleteI've not long woken up after a more normal sleep and not gasping, which is a good sign x I think this time I am more on the mend. We tend to see being ill as failure, It is one of those concepts I have frequent inner battles with x it oes give a catalyst for deeper thinking of the difference between what I think I am thinking to what I am really thinking or something like that...I have hardly blogged, the blog list on here is easier to see the lack of them on...still ramble hugely when I do sometimes, grins.
DeleteAnd...just thinking...I think I was doing better at walking the walk but then the talk went a bit deeper and got a bit more complicated and I reverted a little and kept going...if that makes sense?
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