5 February 2011

thinking today

i awoke this morning with a headache. not unusal, yet when you havent suffered with them for a while the pain takes a little time to get used to again. along with joint pain which doesnt leave me, just travels around the body on a daily basis wondering where to sit for the day. my neck always houses pain.

as i lay here this afternoon, i thought when will i get better?. im exhausted at present, i know, my own fault, you cant expect to do lovely things and not have no pay back. well the simple answer is it wont go away. im stuck with this permanent fog, this pain that travels. im stuck. i dont know how to come to some arrangement with these little buggers. how can i make peace with myself?

just a soppy saturday afternoon. with not enough diversion, because the symptoms have taken over. no distraction. to tired. if i was a horse...

6 comments:

Nechtan said...

Hi Em,

Glad to read in the last post you made the show and also you enjoyed it. You must have done well if you were wanting the show to go on longer. That is a massive achievement. Well done.

Interesting that your pain seems to pool in your neck. That is where all my tension is centered and make my neck feel like it is supporting a head the weight of the world. I read during some progressive muscle relaxation stuff that the back of the neck is quite a fragile area and prone to tension- and probably pain.

I can understand your frustation with the way you are feeling. Its never something for nothing. There is a cost each time and considering the things you have put yourself through with the medics and I would have hoped you'd have had some relief on that front long before now.

All the best

Nechtan

Achelois said...

Saturday 4th February must have been Ehlers Danlos rears its ugly head and kicks you hard day. I woke with indescribable pain. OH said, you need to rest completely today. I had no choice but to stay in bed, locked into a private nightmare of EDS torture. On days such as this, I know that the pain management course I went on would have advised distraction, relaxation, pacing..... I wondered perhaps if someone in such pain not knowing the cause would actually dial 999. Pain relief of the strongest kind only provided distraction of the mind, the body, non compliant, locked into the torture that only another with EDS understands. Pay back time, punishment for trying to be normal. Laughing, people, stimulation, all of this I had the benefit of last week. Saturday 4th of February, will remain for ever, pay back day.

I understand so well that which you don't say. How does one really explain EDS. I have tried believe me. Some may think I am exagerrating. No not so.

I want you to know em that you are not alone on days such as these. There are others with EDS who know exactly how you are feeling. It does not change the facts, this incurable shitty condition is frankly pants. But we pick ourselves up. We carry on. Still we have our dreams, our imagination. It can't take that away. Visualising yourself on a horse on soppy saturday afternoons could well be just the distraction required. Visualisation can free the mind enabling the brain to focus on something other than the pain and exhaustion. It may be for a moment of an hour. But a stolen moment of freedom from the shackles of EDS is a gift to remember. I lost myself on Saturday 4th February and am left like you pondering on the getting better thing. But to dwell on that thought too long does me no good so my visualisation for distraction is to be a bird soaring through the sky.

I hope this week you look back on last and remember the best bits. For they were so worth it I think.

A gentle virtual blogoshpere hug em. You so deserve one.

Em said...

hi nechtan

my head certainly feels like that. almost to heavy for my neck to support. its part of the connective tissue probs im afraid for me. nothing much i can do, other than support it, or take painkillers which at the moment i dont want to do.

all the drs can do is to treat the symptoms, i think due to my reluctance to take strong painkillers, (i dont want to start them yet, bad stomach and all) theres not much than can be done. although hopefully physio may help in a few months when i start.

thanksx

Em said...

hi bendy friend

sorry your feeling crap too. such a situation that we have to face.

the horse thing, i meant if i was a horse they would shoot me!!! bit depressing i know!

i get mighty clumsy with this too which doesnt help with banging into things and dropping things. arghhhh. i always get this way when symptoms get worse. i plod along with putting up with things then bang along comes more. this morning i woke up with earache to top it off!

the visualization, i have a cd which i will practise. i cant complain really because i was in so much more pain when i was active, due to the inactivity and use of wheelchair my pain has dropped some, so i have had it worse. not that should matter but you know what i mean.

booked physio, on the nhs, theres a waiting list for four months i think. if that doesnt work than i may go private, which just doesnt fit into my budget at all, i do need it though.

thanks for commenting achelois, always appreciated.xxx

Achelois said...

Hi em,

The horse reference is so not irrelevant. I think I may have somewhere on my blog ... a post titled They Shoot Horses Don't They.... so it is so not just you.

My day is destined to be bad if proprioception is pants first thing. Although its always there waiting to cause me unnecessary injuries - you know the ones. The already plenty agony joint which smashes into a table that has always been there, no one has moved, yet my brain not knowing where my body parts are in space continue to bash, barge, fall over static stuff. Let alone the crap things in unfamiliar places - I mean for gods sake who ever invented parking meters. I knocked myself out once in Brighton years ago on a parking meter. Stone cold sober - I saw it, my vision was good back then, I mean I knew it was there. In broad daylight I walked into it seemingly to amazed onlookers deliberately and knocked myself clean out. I am just under five foot so walking into a parking meter is my kind of style.

Actually I spent many a happy afternoon for about 8 weeks with a wonderful OT at our local hospital, who was actually a hand specialist but she felt it would be appropriate to help me with damage limitation. She taught me never ever to turn left or right sharply to avoid dislocation/subluxation and propriceptive accidents, instead particularly in the kitchen where I often come apart on many levels, to turn in small circles, surveying the area before I make the decision to move bla bla. Its hard to remember but sometimes works lol

I'm so sorry about your ear. Mine thankfully is a whole lot better since they pierced my eardrum and hoovered about. Once I got over the multiple hospital infections they gave me. How jolly thoughtful of them. Sometimes my ears play up when my neck is out.

I feel another post coming up about me and my battle with the wheelchair scenario. I am pleased that your use of one has helped pain wise.

I haven't had physio for a long time - I agree on the private issue £££££'s and NHS like me but have to discharge me too often uncured. I don't help their statistics! Is that physio at the HMS clinic waiting time? or a local one. ignore me if I pry to much.

I know you have posted further regarding your poor poorly ear and pooches coats as I skimmed before I came here, so am off to read that post properly em.

Take care
fellow bendy xoxoxo

Em said...

oh achelois, walking into a parking metre, ouch,ouch,ouch. i kind of do those things, i know that its going to happen, yet have no control. like nearly dropping a large cup of starbucks tea. i was clutching it when i felt it drop, sliding slowly through, before luckily i held on tight. i really thought that i was going to have a burnt lap!!!

the physio is with a local hospital if i ever get in, i think its four months wait. i will inform them of my problems if they wont touch me i maybe, a big maybe able to access the masonic fund. i dont like doing it, yet they may help out again, thank goodness.

my head is such a mess on the best of days, so sorry if i do reply, sometimes i doddle back over posts and realise i have others posts! appreciate your comments.

oh and i find if i dont things slowly, which im trying to practise, i dont bump into things more often, or so hard, yet i find conciously pracitising slowness when all you want to do is sit down is rather hard.

take care.x