Thank you beelikej for the adorable sugar bunny v-gift! So sweet!
It's cheered me up no end as I was bummed out today after finally making the decision to step down as a mod on the Nick/Greg slash comm. I've had some great times there, and some not so great, but it's been an adventure. Sadly I've had to admit to myself that my energies are needed for other things these days. The remaining mods have already been letting me slack off for way too long, as sweet as they are. But the comm remains in their more-than-capable hands and I look forward to seeing it continue to flourish.
Posting again just to say: friends can make everything better. Wow you guys, what would I do without you?! And *snugs* to sillie82 for the v-gift! I love squirrels!
EDITED TO ADD:
Friends are truly amazing people. You know they're lovely and you know they're always there for you, but then they do something that just blows your mind and leaves you feeling like you just might be worth a damn after all. <3
Following on from the vertigo/dislocated shoulder/broken tooth saga, I was looking forward to a quieter week where I could just rest, take everything at my own pace and not stress about things. The week started out pretty good, I'm getting better movement back into my shoulder again, although I have to be careful with repetitive motion as that causes it to ache, but it's getting there. Still hasn't quite settled back into shape, but it's not looking horrifically out of place either. I can live with that. Actually the way it's sitting now makes me look like I have a sexy, defined collarbone, which is pretty much WIN. Just a shame the other one doesn't match, but I'll remain uneven rather than do the same on the other side, thanks all the same.
So, things improving? Ha, when have you ever known that to happen? Thursday morning I started out with a pain in the neck (no, not my husband) I could move my head side to side but it was extremely painful moving forward and backward. It felt in the beginning that it was right in the joint, but as time went on it got more painful and even harder to move. Richard was rubbing some deep heat cream into it when he noticed that the muscles at the back of my neck were swollen and hard, so we switched to ice-packs. It got so bad that for the rest of Thursday and all of Friday I could pretty much only lie flat in bed without moving, and if I had to get up to use the bathroom I had to keep my head completely still, otherwise it was sheer agony. At one point I moved my head back and it fell completely backwards, like 'back of head resting on shoulderblades' and I couldn't bring it forward again using the power of my neck muscles. There was just nothing there. I had to put my hand behind my head and push it back up - that was kind of scary!
The muscular pain is easing now, but I can still feel that original source of the pain in the joint at the back of the neck. It's getting to the stage now that when one thing starts to ease I start trying to guess what the next thing to give out will be. It's probably the most un-fun game ever.
But this is not the main reason for my post, nor is it the reason why I'm feeling kind of bummed tonight. I think I'm going to have to cut my hair.
WOW. What a stupid, superficial thing to get upset over! Except, it's not really. I started to grow my hair long again a few years ago. When I first became ill with ME/CFS, I lost a lot of my hair. As a 13 year old going through puberty that was pretty tough. I didn't have any bald patches, my hair just thinned all over. I couldn't really have it any longer than shoulder length because it simply wasn't strong enough to support the weight. Whenever I tried I'd just end up cutting it straight off again because it looked just awful, all thin and straggly. It was dyed pretty much every colour of the rainbow at one point or another, because it was the only thing that made it interesting.
But then a few years ago I found a fantastic shampoo which helped strengthen my hair and for the first time since I was 13 I grew my hair past shoulder-length, and actually had it looking healthy. Then I kept growing it. And growing it. Right down to my waist. Because I could. I didn't have to look in the mirror and be reminded of 'my illness' any more. It was like a victory over my health, if that makes sense. I mightn't be able to win the war any time soon, but my flag was flying at the end of that battle.
But now, because Richard is having to help me with washing and brushing it, and also because it gets so tangled with being in bed so much, I think the most sensible thing to do would be to get it cut a lot shorter. Back to shoulder-length, most likely.
And therein lies the reason why I'm upset. I feel like 'illness' has won, once again. This thing that I took back for myself is being taken away from me again. I can't even be sure how explain it, it's like....... my hair was something that for the past few years was just me, my thing and didn't have to be defined by or changed in any way because of a 'medical condition'. And now I do have to change it because of that very thing.
I don't even know if that makes sense to anyone. There's some weird shit that goes around my head sometimes. Also, in a strange way, it's like finally acknowledging that this is the way life is now, and there's not a God-damned thing I can do about it. I just have to learn to go with the flow, and sometimes sacrifices, no matter how trivial they may actually be, have to be made.
OK, I think my blahblahblahing is done for the night. Hope you guys are all good. =)
A few of my aids from the occupational therapist turned up this morning, I've been sent a stool for the bathroom, chair raisers (the armchair is so low and soft that even my in-shape other half has trouble getting out of it), foam cutlery handles to make it easier to hold my fork when my hands are rebelling against me, and a hook to do up buttons. Yeah, don't think that one will be used much. I only really have buttons on my jeans and it just doesn't work (nevermind the fact that my hands shake too much to get the button into the hook in the first place. It's like one of those games where you move the loop over the wire and try not to sound the buzzer.) All the other stuff should come in handy though.
The new wheelchair should be here in about 5 weeks or so. At the minute I'm using a loaner from the Red Cross, which I've already had for longer than the original agreed time (negotiating skills FTW) The woman from the Red Cross was due to contact me 'at the beginning of February' to sort out collection of it but I've heard nothing from her so far, and I aint rushing her along. This new chair will be sized for me though, and so will be slightly smaller and neater than the one I'm in at the minute, which will making getting through narrow shop aisles a little easier. It's unbelievable how much crap shops leave in the middle of their aisles. Yeah, your boxes of hair dye are half-price, wonderful, but do you have to plonk the crate of them right in the middle so I can't fit around either side?
I digress. Still no word from the physiotherapist, even though my OT was submitting a new referral as 'urgent'. Still waiting for my GP to reply to the questionnaire for my Blue Badge (disabled parking pass). Apparently it's somewhere towards the bottom of a very large 'to-do' pile. He's had it for a month, so he can't be going near his pile all that often. *sigh* I'm seeing him in 30 minutes for my sore throat... do I dare mention it to him again (for the third time)?
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.
Hey guys, just a drive by to wave at you all and blow kisses. Hopefully I'll have a longer post for you with some more health-related stuff in the next week or so, and that may explain a few more things or at least elaborate on my previous 'health' post.
To those of you who have recently friended me, welcome aboard! There's not much going on right now, but it's great to have you anyway. To those who have defriended me, I understand, I haven't been around so I'm pretty much top of the list for flist trims. Still love ya!