You wouldn't like me when I'm angry
I debated whether to lock this post and make it friends only, but in the end I decided to leave it unlocked, as I know the EDS newsletter can only link to open and public blogs, and perhaps other newly diagnosed people are kinda going through the same things I am.
( The one where I whine self-indulgently for a while )
( The one where I whine self-indulgently for a while )
But I can (I hope) bring you glad tidings. The anger does diminish. I've been diagnosed now for almost eight years, and while I still have my occasional "Gollum days" where I basically (as inferred) hide under my covers hating on the world for all the shit it's thrown at me, they pass. Basically they have to, because between doing nothing but pretending to be a proto-Hobbit and actually getting out there and getting on with what I can do of what I want to do ... I'd rather be going to concerts (The Who still totally rock out if you're in a wheelchair or not ;) ) and having picnics and working in the theatre and knitting frivolous stuff and cooking and all manner of whatever occurs to me to try to do. There will be bad days. Days when the pain's overwhelming, or the exhaustion just gets the better of you, or everything seems to go wrong all at once. But the wonderful thing about time is that it passes, and eventually that spectacularly shit day will be over and done with. Wallow for a few days if you want to (I have a particularly fine DVD library for my "not going anywhere; not doing anything; fuck off" days), but know that things will improve and you'll have better days ahead.
Also, I see your photos and raise you:
I did mention the contortionist thing, yeah? ;)
*gentle hugs*
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Yep, I have quite the DVD collection as well! My set up is in my bedroom, so when I'm feeling really crappy I just go to bed and watch a boxset or a really good movie to distract myself.
Also *yikes* at your photo, lol. I can do the crab, but I definitely don't bend that way! WOW. Does that hurt? And.... how do you get up again?
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Get up one of two ways: let the stomach muscles contract and rebound and you practically snap back like elastic, or gently collapse onto your back after walking your hands back out a bit and standing up. Dignity optional. Doesn't hurt, but is definitely on my "don't do again" list (or "don't do again and let my physio find out" list" heh) since they discovered a small fracture in my L5 after I fell down the stairs a few years ago.
Which reminds me: are you pathologically clumsy as well? Or is that just my luck to have the hypermobile joints in my legs over teeny tiny feet (still wear kids shoes, size 3 Docs), meaning my proprioception and balance are compromised from the word go?
Oh, also, re: diet. Do not let any doctor try to bully you into losing weight at a rate you're not comfortable with or at all for that matter. This may sound stupid, but there is an amazing dearth of medicos out there who can't seem to grasp the connection between *chronic pain* and *inability or disinclination to exercise*, even when adding in *seriously unstable joints*. Don't push yourself if you sign up to an exercise program. Don't starve yourself. If you want to lose weight find someone sensible to help you work out a plan, don't let the disapproving bullshit we're all trained to buy into as females in the western world saying that we could all always stand to lose a few pounds, and especially with the added "it'll be better for your joints!" I've lost 30 kilos in the last two years (not intentionally; lupus sucks) and my joints still hurt. Just as much as they did before. So if you feel like you'd like or want to lose weight, do it for your own reasons, and not because you're being guilted into it by the Medical Industrial Complex. ;) Aqua aerobics and hydrotherapy worked really well for me, they're the best for us - non-weight bearing taking pressure off the joints, just be careful if you've got a dodgy hip - some swimming moves like breaststroke are probably a bad idea. On the other hand, weight-bearing exercise is the single greatest factor in preventing osteoporosis (don't listen to anyone trying to sell you calcium supplements), so a gentle walk, even ten minutes a day, is also a good idea.
The light isn't always an oncoming train. Take care. :)
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Luckily so far I haven't had any pressure from my doctors to lose weight, although I'd assumed they would (have heard plenty of other people's tales) but I would like to lose a little bit for my own health. I'm just trying to do it slowly - problem is with me is that I don't have a great appetite at the best of times so I don't tend to eat much, then I'll get all 'wurgh' and need something quickly and tend to go for junk as the quick fix.
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I just found your blog entry from february - where you tell about your anger. I hope, you have had other feelings since then - albeit anger in my experience comes back again and again. I can identify so much with what you are writing, and I just thought I'd write you a note, saying that it DOES get better. It takes time and it seems impossible some days. It does get to feel the same again, too, but it WILL get better.
I'll tell you my version of it - maybe it will be of use to you - or to someone else. Maybe I just want to tell it after having read yours.
I got diagnosed 15 years ago and spent a few years in total denial - I was trained as a dancer and insisted on dancing professionally, even though I had injury after injury. Injuries are part of the job, right, I was just unlucky to have so many of them, and I returned like clockwork after each accident, dislocation, illness. I knew, the condition existed, but it had nothing to do with me. I joined the EDS-community in my country, but I refused to meet anyone from that weird club, I just skimmed the newsletter and tried to forget it ASAP.
Then came bargaining. Years of serious bargaining.
If I go to see the other people with EDS - confront myself with it and try to learn from them ( They were all so GOOD at this, they were all so clear and calm about it... pain, shattered dreams, broken careers, wheel chairs and braces... I just didn't get it...each and everyone, even the very young ones, so much more capable of dealing with reality than I was. Am. Possibly ever will be. ) If I have that surgery in my wrist. If I go to that retreat and think about things for two weeks. If I take a long break from dance, say, a year - and train to become a Pilates Teacher.... so that I will never again have to despair on account that I do not know how to recover after an injury. If I do that - a huge compromise - if I do that, can I please have my life, my career, my dreams and plans back? Please? PLEASE? If I do not tour any more. If I just stay in one place. If I start eating better. If I lose weight. If I do more serious core exercises. If I ....
if I just try a little bit harder?
(Oh, I forgot - anger. Though that is what kicked all this off. Anger followed and follows along the road. When being crushed by another dislocation that none of the manual therapists can bring back into place. When a session with the psychiatrist reveals, that yes, pain can cause you to have a depression. When being bombed back into the place of despair, pain, loneliness and hopelessness by the feeling, no, the KNOWING, that it will never change, perhaps only get worse. When seeing other people accomplish their doings with ease. Anger is there. Right around the corner. And sometimes at the centre of everything.)
Depression came more than once over the years - once for realizing the enormous scape of this - and hating it - and twice simply from pain. Jobs were lost to the pain of stubborn dislocations continuing week after week after week, the fatigue, the nausea - and the following depression. Medication came and went. The same psychiatrist, though, which was very helpful. She followed the steps, the u-turns and the cauldersacks.
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And, I can hear the withheld breath of you all...
now; to what should be the perfect crescendo - acceptance! Well, that one is still in the process...
"If I just try a bit harder" is gone. "If I just do it anyway" is gone. I am now working my way through "This is almost as good as..." and "This does not hurt" and "At least I can do THIS!" and, most of all this one "I remember that. That hurt."
I am still waiting for "This is really OK with me" or "I would not want to be anyone else". Wonder, if those will ever come.
What I think I am trying to say with all this is - this takes time. And it keeps changing. It is not like something that will stop and suddenly feel green in stead of red or hot in stead of cold. It changes slowly - like something very well known, that gets worn around the edges and suddenly you realize it to be of a different shape. You are still you - though having a serious condition like this will affect your self-perception, -confidence and whole identity. And the steps will be trod several times - it comes in cycles, and with every new round, you change a bit more. Hopefully the next round will be more easy. Hopefully the next part of the process will be be less painful.
Honestly, I don't think the work ever stops... this is challenging like nothing else. The only positive thing is, there is so much to learn, and looking back - whauw, I've learnt. Looking around and ahead - whauw, there is so much more to it. And it does get better. At times it is even good.
There are great people out there. That is helpful. Those with EDS are the only ones who understand exactly how it feels, in the body and in the head, and (after the years in denial...) meeting them has helped a great deal. Sharing amongst other rubber-people is helpful - makes me feel 'normal', which I hardly ever do :-D . Accepting that I could not do it alone was a huge admittance - and I had a fab psychiatrist to get me through some of the bad times. Accepting that this will take a long, long time... that is as far as I'm willing to go for now... wonder, what I'll say in another 15 years.
Whauw, that was a LONG note!
I hope, you're having a better time. Let us hear, how you're holding up.
Dorte
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