I'm fine!
I made a bit of a pact with my friend Sue who writes Diary of a benefit scrounger that we would make sure to write regular 'how I am' updates. Typically for two spoonie scrounger types we've either not had time or not felt well enough when we have had time to do a very good job of it. So this is me making up for it. Sorta. I'd go and get a cuppa if I were you and come back once I've finished rambling, it's awful dull.I went for a deathwalk today. Having had to be rescued by half the neighbourhood recently my friends have expressed concern about my deathwalking alone. So, typically I ignored the advice, went out on my own anyway and got stuck. Having friends in all sorts of places meant that Roland was able to call up another friend who's a paramedic to come and collect me, which all sounded really easy. Except some poor child had the audacity to need an actual paramedic at the same time I needed a lift home so Roland had to come and get me himself. But that was last week - I think. Today I opted for the RNLI option when I got stuck half way through my deathwalk and sat in the lifeboat station with a drink of water until I could make it back home. Although...now I'm writing all this I can see my friend's points. Sort of.
But I am still fine. Or so I keep saying. There's not alot else to be said really. It's just the way it goes for those of us who live with chronic illness or disability and what might seem extreme to you is routine to us. At the moment being so wobbly I look like I'm having a seizure is common place and because my muscle tone is so poor I slump over even more than usual when I sit. Lovely Carer hasn't mentioned anything about weight loss, which is understandable as she still has PTSD from the last time I ended up weighing all of 30 kilos, but I can tell she's concerned as every time she's here she insists on putting food infront of me.
I'm really dislocatey too. Most of my dislocations reduce themselves almost immediately, but come out of the socket too far to be classed as true subluxes. They all hurt, but only the ones where I can feel vertebrae sliding about in my upper neck really scare me. After one neighbour rescue I had to reduce both shoulders, both hips, both knees and assorted other ribs and spiney bits, something I do more times a day than I consciously register so I forget how it impacts on others and was surprised by how my neighbour's eyes filled with tears at the noise.
I'm also more forgetful than usual, so if there was supposed to be a point to this post I'm really sorry but I've forgotten what it might be...
19 comments:
Get a job you lazy scrounging slacker!!
Come on - hundreds of employers are screaming out for someone who can fit themselves into boxes to test volume, stretch themselves to reach high shelves and dislocate their way out of elf and safety crises.
You're my hero!!
Oooh, captcha code beannie, which is name of my stunningly gorgeously lovely sister in law!!
IT'S A SIGN
very gentle hugs...in fact as it is in words form rather than real life there....big unconditional love blanket hugs...
relating so much to things we forget to register on the scale of what would have many calling for medical attention...
you may be forgetful, but the most important thing to remember is ~
you are loved and valued. hug xx
What happened to your miracle physio worker?
30 kgs? Is this true?
This is why I have become a hermit. Going out alone - how very dare I. Indoors shoulder subluxed, elbow joined in. Its my fault got bought laptop. Used it for longer than a nanno second. Neck spasms joining in.
I imagine that if 'they' get their way, us lot that can't get out alone won't get mobility component of DLA (PIP) anymore on the grounds that someone should volunteer to carry us around, for nothing, whilst they hold down a full time job, be a parent, carer to sick elderly parent and volunteer to clean the streets, otherwise be accused of not joining in the fun. Its all part of embracing change.... Now I would embrace change fully wholly completely, if someone found a cure for EDS, osteoporosis, osteoarthritis, PHN, recurring thygeson's keratitis... there's more but you know what its like my medication necessary & prescribed
and brain working well aren't happy companions.
I just looked at the hashtag deathwalk thingy on twitter. All the bendies are attempting to deathwalk... when will we learn to stay inside all of the time eh....
BG, it seems that in actuality, we save the NHS a lot of money for we put up with a great deal of pain, dislocations/subluxes which would make others dial 999.
I am rambling now, pain makes me do that,pain affects my cognitive thought processes. It seems not only does it make my limbs shake as you describe it affects my brain too.
I am pleased for me that you have enabled moderation because it means rambly comments don't go through. Not pleased for you though if the reason you have had to do it are what I think.
While I get the point of stubborness (says the woman who tried to strap 20 kilo weights to her hands to keep being able to lift *cough*) there is a point where, no, you're really REALLY not doing yourself any good by forcing the exercise. Might be time to take something else up. And get a chaperone. And yes, when I figure out how to do that myself, I'll let you know.
Sue: Haha! A job as a goldfish bowl girl *may* have been suggested before now ;)
Lainey: Thank you both for the hug & the wise words. Hope you're doing 'fine' too Xx
Anon: Aww, that's lovely, thank you x
Veronica: I'm still seeing physio who is frantically trying to work out how we can turn this around, but as usual for us there are no easy answers. Hope you're ok my love Xx
Anon: Oh Anon, always so cyncial and so anonymous. http://benefitscroungingscum.blogspot.com/2007/09/ch-ch-ch-changes.html
Achelois: Hugs. Sorry you're having such a jelly time of it too :( I very definitely get the impaired brain function too - my friends usually describe it as my 'being there but not there' when I'm like that.
And yeah, comment moderation's for the reasons you'd think ;) Xx
Oya's Daughter: LOL! It's almost like the stubborness is as much part of our genetic makeup as the bendyness! I'll rely on you for the chaperone/safety tips then ;) Xx
1) Tip one - get chaperone. Preferably a big Swedish guy named Sven. Who can breathe through his ears.
2) Make sure he has a brother.
3) Call me if he does.
4) Conversely if I hear from Aussie Eyecandy again, I'll ship him here. And clone him. Then we can all have one.
Tsk! Excuses, excuses... *wink, wink*
It's okay. I had a flare up of one of my chronic conditions a few weeks ago, and it really waylaid me. You'll be back and storming the world again in no time.
Ouch. By the way, had my bendy gastro appointment at Barts today (fantastic), and asked if they did phone consults with you in mind. Not without an initial face to face consultation, sadly. But he did say that bendies should take an effective probiotic long term - as gut flora tends to change so dramatically with EDS and this causes lots of problems.
In his view, the only two that work are VSL 3 (prescription, better he thinks for bendies) and as second choice Pre Bio 7, which can be got over the counter at Boots. He also recommended 'wiping the slate clean' before starting probiotics, by taking a course of antibiotics like Ciprofloxacin (if one can cope with the potential upset tummy side effects).
As ever, this advice may not be useful/apply to others, consult your physician etc etc, but thought it might be useful to share.
Hope things get easier soon.
Interesting blog and comments, I hope you're doing better. I was interested to find VSL 3 is on prescription. I paid for mine and a courier and then it made me ill! I am very allergic to milk though. You weigh less than me I went to 50 Kg - but I'm 185cm. I've gained weight and I'm much better now. Watch those death walks, I've done that; I am more careful now and suicide drive instead. I am glad i can drive although it's nerve racking these days.
Good luck with your future and never give up. I was in constant pain and I made it through and I'm a lot better now. It's a bugger waiting for the to find the right treatment when it takes decades though.
Mike Maynard (Mike10613)
I admire your attitude!
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