Category Archives: Health Etc

Ehlers-Danlos Syndrome; Coeliac Disease; Fibromyalgia; interesting research; general health and science topics; rants

Ungoodhealth 01

Taking such a long break from blogging was not something I wanted to do. Circumstances forced it upon me, as I’ve said before, because of health issues blah-di-blah. It’s also why I’m posting so often now – and drafting, making notes and planning other posts – because I can.

This is actually very difficult for me to write about. My personal bête noir, my health. I don’t like talking about it for so many reasons, the main ones being:

  • it is pretty fecking boring;
  • it’s difficult trying to explain it without sounding like I’m feeling all sorry for myself, whingeing and whining, no matter how factual I try to be;
  • I’m a very private and introverted person, and it’s kind of been drilled into me [via my rather oppressive upbringing, and various unpleasant life experiences] not to divulge or share such information – let alone talk about my feelings; and
  • the medical issues are kind of complicated.

See, I have several different disorders / diseases, and each one by itself can have a major detrimental impact on a person’s physical health and quality of life. In my case they have a cumulative effect, intertwining and snowballing all the “original” symptoms and issues.

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Commence Operation “Reduce Elephant”

Way back when I was diagnosed with The Collection, an intense, varied exercise regime became an important part of my life.  Hydrotherapy, weight training, cardio, boxing, Pilates and yoga, core work and resistance exercises;  I was at the gym four times a week.  And I loved it.  Suddenly I turned from a tiny weak weed to a tiny buff and muscle-y dynamo – I even earned the nickname ”Pocket Rocket” at my workplace.   

[When I met Tuxedo I looked like a Mini-Me version of Linda Hamilton in Terminator 2,  right down to the black combat pants and tank-top, but sans uzi.]

Over the years of course, my health and thus my routine had their ups and downs, but I always managed to keep some kind of exercise going.  Even when the situation got really bad – like last year where thankfully I had Tux around to look after me so I didn’t have to be hospitalised for months –  I managed to do daily stretches, leg lifts, sit ups, push ups, basic Pilates core work and resistance stuff.

At the start of this year, after The Year Of The Shite, I knew I had to get some serious informed physical therapy and rehabilitation to get me back on my feet.    But that wasn’t the only obstacle I faced . . .

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As referred to over in Otterkat, things have been kind of tough around here lately (“here” being Chez Crazy, abode of Tuxedo and myself) due to major health crises;  redundancy and fruitless job search – due to the total lack of  an IT job market it should be said and nothing to do with the brilliance of my man;  battling the dragon of government welfare agencies and trying to get the support and the pension to which I’m entitled;  adjusting to the new World Order and our new circumstances;  and mostly, realising how absolutely mind-blowingly lucky, fortunate and happy we really are.

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So – the aforementioned health crises.

Basically my pain levels went into overdrive mode back in April, and kept on going up and up and up.  The pain was excruciating, especially in my neck and head – goddamn occipital nerves and wobbly joints! – so I was doing a lot of writhing around screaming.  And not in a good way. 

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Square one

Yes, yes I know.  I’m not even going to apologise for disappearing for so long.  It happens, that’s all there is to it.  The last couple of months have simply been really, really rough, even in comparison to the normal roughing and toughing it out that’s my life.

The biggest thing – that is, I guess, having a cumulative effect on everything else – is that Tux was made redundant at the beginning of April.  This came as a huge shock;  he went into work on a Monday morning as usual and half an hour into typing up his daily report received a tap on his shoulder from his boss.  Half an hour after that he was being escorted from the building, along with about fifteen others.  (Tux did notice when he came into the office that there were a lot of empty chairs … ) 

So major health emergencies;  financial woes,;  work search;  non-existent IT Job markets, blahness.  Tux took it all pretty hard at first, with me doing the Tower Of Strength thing, taking my turn in being the one being leant on and giving pep talks, keeping spirits up. 

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Crazy Diamond 101


Otterkat is now officially my old blog:   Crazy Diamond is where I post everything now.  You can still check out old Otterkat posts though (if you are bored enugh …) ;  it’s there linked in my blogroll.

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So here’s the thing;  Otterkat wasn’t working that well for me.  I wasn’t posting much at all because I was self-censoring.  Entries just didn’t gel or meld in with the rest of the “style” in fact there was no “style” or over-arching thematic structure or somesuch shite.  Yes I’m eclectic but there was happy horsie stuff and recipes and girly entries, mixed in with manic rants and depressing and introspective posts.  The health issue ie The Collection was the major problem;  if I blogged daily it would be “Tuesday:  screaming pain.  Wednesday:  screaming pain, puking.  Thursday:  screaming pain, puking, vertigo, fuck I’m fed up.”  That would get somewhat monotonous, I believe.

To that end I’ve split Otterkat into two, one part remaining as Otterkat, which will comprise the lighter side, viz a viz entries on horses, kittens, make up and skin care and other female stuff, cooking, books, rainbows and butterflies and unicorns / pegasi et al.

 The other part is this, Crazy Diamond, named after the Pink Floyd song and the lyric of which (“Shine on you crazy diamond”) Tux had laser engraved on my iPod, from which one surmises that the “crazy diamond” is me, and “shining on” is me trying to get through the days as a physically disabled, emotionally / mentally complex, slightly bitter mess.

Sooooo here is where you will find the existential manic rants, the whinge-ing and the majority of swear words.  There will of course be hiatuses (hiati?) and I will not apologise for those.  That gets really, really boring; anyway Tux is trying very hard to train me out of apologising all the damn time so this here may be a good place to practice.

I’m hoping the actual writing and externalising of all the crap will help keep my head together.  I’m also hoping that it will act as a starting point from which to connect and network with and create a support structure with other people sort-of-kinda-ish like me;  disabled / restricted / just a bit messed up who want to be identified as far, far more than the sum of their circumstances, who are wrestling with the usual human daily problems and minutiae as well as the big-picture stuff. 

What that all really means I don’t know yet.  I don’t know if it will work but I know that I need an outlet for some of the issues I’m struggling with whilst feeling isolated and remote.  So we’ll see . . .

Update March ’09

Hmmm, yes, well, haven’t written anything here since January (o mea culpa) and while I’ve sat down to post many times the words just haven’t made the transition from brain to keypad.  Let’s face it, it’s been a tough few months and I am not a good conversationalist in these sorts of circumstances.

So … Lashings of pain / health crap / associated unpleasantness, nothing new there but it was really doing my head in, turning it to mush and sparking off other kinds of ickiness.  Item 1:  Early in February (I think) my specialist decided to try me on anti-seizure meds, which are supposed to help with extreme neuropathic pain.  Did they work?  Don’t make me laugh.  After three weeks there’d been no reduction in pain, they induced a really weird and horrible emotional  / mental state, and the worst bit, totally killed off my libido.  This last was the worst;  I wasn’t “only” uninterested in sex / love-making, I couldn’t bear any physical contact at all.  Very, very strange for what is usually a most tactile creature.

Needless to say I chucked the medication but the damage was done;  I was in a fine ol’ state of absolute existential despair and death of joy.   I can’t talk about it because it’s still going on (and on), although slightly reduced in the last couple of weeks, it’s just always there and it’s horrible.  I want to cry like, all the time, and occasionally I succumb but not around Tux because he hates it (because he’s a guy and guys want to fix things and he can’t fix this thing or me) and anyway it’s pointless and I don’t feel any better afterward.  You know how sometimes a good cry can be kind of cleansing?  This aint.

And on top of, or mixed in with all that, is my body, or hormones or biological clock or whatever, is SCREAMING babybabybaby, which is and has always been totally out of the question.  Yes, it’s very sad, and while I’ve always recognised that it wasn’t going to be a possibility for me, knowing I / we can’t have the option of even trying or thinking about options when we’d really like to (because [a] the whole pregnancy thing might kill me or leave me even more disabled; [b] how can I look after an infant when 90% of the time I’m so ill I can barely look after myself?; and [c] what if we had a baby and it had EDS et al which is highly likely, how would I feel?) is really, really hurting just now.  Horribly.  Gah, can’t explain it.

. . . . . . . . . .

And THEN, on top of all THAT, are my issues with weight.  I’ve gained so much weight in the last couple of years, due to all the stupid medical procedures (that didn’t work anyway) and medication (ditto) and I can’t fit into the jeans that three years ago I could wriggle out of without undoing the button.  It’s odd, I was always so full of the body-hatred thing, and avoided mirrors and all that, so I have no real idea what I actually looked like, but looking at and measuring my clothes from the 90s and early 00s I was obviously teeny and slender and buff and had a really cute bod.  Now?  Not so much. 

And knowing I look (and FEEL) like a baby hippo is feeding into the despair like so many tributaries into the Amazon . . . And you know, it’s really tricky to get ultra fit and buff and cute again when you spend 90% of your time in bed screaming and crying in pain and being zombied out on Class A drugs (that aren’t even FUN, for feck’s sake like).  So woe is me and all that.  Bleaugghhhhhh.

. . . . . . . . . .

So I’m sorry for the doom and gloom;  I’ll try and get up a few harmless fun posts about horses and cats and fitness routines soon to bury this one.  Hang in there.

Apologia on whinging

Regardless of the impression you may get reading my bloggy-thing, I really, truly, honestly, don’t whinge much about health stuff In Real Life!  Mostly it’s just to Tuxedo and he’s aware of what’s going on before I properly vocalise it, due to whimpering and crying during sleep, and the involuntary moans and grunts when I wake up / get out of bed in the morning.  I might catalogue the various aches and pains if asked but he knows me well enough to know what’s going on, without the details.

Then again I sometimes do feel the need to report “well my head is killing me, my neck muscles are in major spasm so I can’t see let alone think properly, I want to scream, my back is totally screwed, even my fecking toenails hurt and I wish I were DEAD”, but it’s more to explain my general demeanour than a whinge about how terrible my life is.

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Back in the saddle

After a two week break for school holidays and a nice rest for the gee-gees, RDA commenced Term 4 this week.  Wheeeeeeee.  The two week horsey-less hiatus was hellish, health-wise [but gee can I ever alliterate] so I was incredibly happy and bouncy to get out there for my first lesson on Tuesday afternoon.

Yay;  horsies!  I was so pleased to see my cranky pony again.  I gave him an extra-long grooming and he positively gleamed!  He’s lost the last of his winter fuzz and is sporting a sleek summer outfit.  Well, except for the thick 50 cm long mane and ground-brushing tailio … He went beautifully for me, so responsive and very full of zip.  Heaven.  Sue [coach] kept the lesson very slow and steady, so I wouldn’t over-do things after the break, but I was champing at the bit as much as L. 

Lucky me, though;  Marie – the other coach – let me stay on for another 15 minutes or so after the lesson, while getting the other riders off and the next class on, so I sneaked in some extended trot and serpentines, whee!  L. was just waiting for me to ask for a canter but I didn’t want to push my luck . . . After that Marie got me to help hose down L. and a couple of the other horses, it being a very hot day and everyone sweating. 

Hosing the horses down was fun; one of them really loved it and was bending his head into the spray and slurping out of the nozzle; L. being a big girl’s blouse danced around on his toes going “nooooo! Am a delicate princess!  Don’t let that scary water-snakey-thing near me aaiiieeeee” before giving up and standing with his head down like a fat old cart-horse.  And of course Marie and I did not get into a water fight, with hoses and buckets of water and sponges flying, I deny the mere suggestion!

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Ahhh crap cont’d

Oh joy, the crap doth continue.  Briefly, the last couple of weeks have been spent in recuperation from the recent gastrointestinal party and other fun stuff.  The results of all the tests were mostly totally normal – which is wonderful, how often do I hear that something about my body or brain is “normal”?  Also a massive relief of course – but on the flip side, no idea as to the cause of the commotion.  Possibly something liver-ish, which wouldn’t surprise me.  So we battle on.

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Ahhh, crap

Hell yeah, just what I needed   another major health crisis. 

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