Sunday, 22 May 2011
Wednesday, 18 May 2011
Puns Needed
Hello my friends, sorry to have been absent so long, lost in a sea of endless appointments and stress with alot of being stuck in my bed, I hope a few have stuck around to keep reading!
I really wish I had possitive stuff to say, I’ll list a few useful things that have occured in the time I’ve been absent..
Finally found a pain clinic that IS NOT staffed by ignorant fools and who are actually helping me with various things to tackle the pain and also a rethinking and gradual changing of my medications etc (cannot express the joy I have about the non-evil pain clinic, after 10 years of nonsense and being sneered at, disbelieved, even post diagnosis, to have ‘real’ pain, the difference in help provided is astonishing...! ) Tomorrows pain management plan deals with sleep issues (good timing too insomnia obviously waited right up until I started thinking “you know what, getting up early, and doing all those millions of things that make my a tiny bit closer to comfort and getting to bed early and everything else is sorting my sleeping right out!”... WRONGGGGG. *Eats hat and weeps (and suspects the constant friggin’ bombardment of helicopter racket at 2am onwards here is a culprit? Selfish, war-mongering, fascist noise- poluters!!!).. I need sleep L*
Finally getting somewhere with my care/disability help/ total lack of a life thanks to being sucked dry by a huge leaching creature known as chronic illness, think I may have some hope of a vaguelly bearable life soon, yey one up for persistant, pleasant nagging.
And my two favourite people turned 5 :P
Also, best of all in my view anyways.. I finally have my beautiful, amazing, ingenious ring splints! Will upload photos and big explanation of the whats, whos, hows and whys of rings splints asap, suffice to say they are brilliant.
Still awaiting results of mri re possible chiari.. will update when I know.
Anyone who wants to cheer me up, message or email your favourite pun/s, I am addicted to puns, the worse the better, and I’m not ashamed to say it! so share the love people, I need cheering up.
Love x
Monday, 25 April 2011
Tuesday, 19 April 2011
Saturday, 16 April 2011
Sunday, 20 February 2011
One of the worst things about being on horridly strong meds is the first dose.. there's no way to tell how your body will react, and a bad reaction, like the time I projectile vomited, is NOT fun. Then there's the fact that if your body doesnt get on with it the side effects might last ages even if you cease taking it (like when I tried tramadol and discovered I'm very allergic to it and wanted to scratch my skin off for 2 days from taking one pill.) People think they know what being sick all the time would be like,.. they dont. They have no idea. It's a lonely thing to know if you're me.
I'm sitting here waiting by my sick bowl with apprehension, having put it off for a few days while I quit smoking (otherwise.. whats withdrawl, whats side effect?) in a few days I'll do this again with my OTHER new med, this will bring my current meds up to 10 regular (daily, 4 hourly..constantly) not to mention my emergency meds. Today it's the anti spasmodic to try to stop my right leg being determined to not straighten properly due to what we think (me and gp being way out of our depth) are vicious muscle spasms behind the knee. apparently they make me feel pretty limp limbed which is like.. er.. petrol on the flame of eds joints + hormones (yep girls, THAT is why youre clumsy THAT week, I on the other hand dislocate like 5 times as much as usual and feel like crap) + muscle degeneration (being basically laid up for nearly a year, on and off esp if you have connective tissue issues means muscle degen is pretty rapid) + antispasmodics = the floppiest me that ever there was.
I'm on many a waiting list as always, one of them I havnt mentioned is to see a neurologist for suspected chiari malformation and possibly also tethered cord.. googling these things (chiari institute, youtube-joannacare, chiari blog, ehlers danlos chiari research etc) will fill you in to what this means, and why we are worried as it makes a ton of sense (and this medical 'ball', if existent, was DROPPED .. alot.) the worry because taken into consideration with my scoliosis the only option is major spinal and brain surgery.. hence my quietness of late, I have no idea how to feel about it, I have ages to wait before I know anything, typically the ehlers danlos makes the testing complicated, then I have to try to find a surgical team I trust not to cripple me for life or kill me with anasthetic or one of the many risks when you factor in the eds... from what I understand the whole thing will involve a fair amount of spinal fusion too.. which will suck worse than I can even guess at.
I know there's a few people who know me who follow this blog annonymously, sorry to tell you guys this way I frankly cant handle talking about it much yet, and we dont know much yet, but it seems pretty clear with all my symptoms... and if they do decide that's what is going on then I should be going under the knife pretty rapidly (so long as the nhs dont screw it up... again, again, again...) and therefor wont be capable of letting everyone know. Not much should change I'll be laid in a bed dosed up in agony as always only it'll be a hundred times worse than usual but there will atleast be a point to it for once instead of me just decaying under the doctors noses like I am now. The new meds are more things to keep some of my symptoms under control, as the list piles up the meds pile up.. it's getting hard to tell what is a symptom and what is side effects. It's ironic to consider my 'official' medical assesment for my disability payments to make my life vaguelly livable that I've been battling for for nearly a year now, which I've been told is the 'official' record and cannot be contested. I'm freaking well contesting it anyways, seeing as the doc flagrantly skipped important info (she also lied, and misquoted me and I'm not letting up about that medical report until something is done about it.) This hack states that I have no side effects from medications which makes me want to make HER take these meds all day everyday and see how she likes the constipation, stomach ache, nausea, vomiting, etc that comes from swallowing poisons all day. How many healthy 29 year old women need weekly meetings with thier gp? (not appointments as we can cover 10 issues in 10 minutes which is another thing that 'offically' cant be done) His opinion though is not anywhere near as important... gah.
I've typed more than I can (three sittings to type this) so I'll carry on some other time.. some good news to end this, I quit smoking (day 6 going fine) it's been so easy I feel like I cant take any credit! (hypnotherapy, baby!)
Night all you lucky not-me folk x
Sunday, 16 January 2011
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