Friday, July 2, 2010

Cars, medications and XMRV


I have made a small decision this week, but it’s one that feels like a huge deal. I have taken steps to de-register my car and cancel the insurance on it. I haven’t been able to drive in 6 months and clearly I wont be able to do so anytime in the foreseeable future. It’s just common sense really. Why pay for car registration and insurance on a car that will never leave my garage, in fact why not sell the car?? The thing is, even though I have come to a place of acceptance with this illness I guess there are still little bits of me lurking in the shadows that are saying ‘you’re not really ill, you’ll be up and about again in no time’. I know rationally this is not true but I guess it’s tied into that emotion of hope. De-registering and un-insuring my car is going to save me $1200 a year but it’s also snatches away another symbol that represents my old life and the hope attached to that. I have to do it because the money thing is a BIG thing ….My bank balance is currently going backwards at a rate of about $200 a week, so I need to find ways to trim that down! I’m not ready to sell the car, but maybe that will happen in due course.

On a brighter note (big happy smile goes here). I have settled on some medications/supplements that I believe are helping with many of the day to day symptoms. I am taking Endep at night to help with sleep (I know this is working because I forgot to take it the other night I had a terrible night of cold sweats, nightmares and endless tossing and turning). I am taking Vitamin D capsules which help with muscle dysfunction and pain, PreDop which helps with heart dysfunction (POTS etc), I am also wearing compression stockings to help with this (and they look very fetching). I am taking L-Carnitine which help with brain fog and nerve function and Creon which is a digestive enzyme because my pancreas is in a state of constant inflammation and isn’t working properly. Oh, and I am still getting a Vitamin B injection every 2 weeks which helps with fatigue and malaise (this definatly helps me). As I said, this combination does seem to be helping with each of the day to day symptoms. I’m miles away from being symptom free and I still cannot stand or sit upright for more than 20 minutes without the POTS getting me but it’s real progress and I am happy with that!!!

OK, next on the list ….. XMVR. I don’t know why I allowed myself to get sucked in by all of this. This kind of thing never goes smoothly, obviously there will be no resolution anytime soon …. I’m sure this will eventually be proven to have some significance but until then I reckon we should just go about our business as usual …. and when something is proven and is legitimately published then we can evaluate it.

Lastly, if you haven’t already signed the Justice for CFS/ME sufferers
Petition then please have a look - http://www.gopetition.co.uk/petitions/justice-for-cfs-me-sufferers.html even if you are not in the UK it is still worth signing!!!

9 comments:

  1. Hey, would you mind signing this petition?

    http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress

    By the way , love the site :)

    ReplyDelete
  2. Lee Lee -

    Wow! I am so sorry that you are having to let go of your car. I would think that is also a symbol of freedom.

    I am struggling to decided if I should buy a care and how much of a car as I know I wouldn't drive it very much even if I had one.

    I totally agree with you on the XMRV thing. After 20 years with CFIDS I have learned to take the wait and see approach to all 'good' news.

    Happy 4th of July! :-)

    ReplyDelete
  3. Holy Shit, no more car? That is intense, dude!

    ReplyDelete
  4. I'm so sorry about your car, but I think it's a big step in acceptance and moving forward with getting better. But I wouldn't get rid of your car altogether! We must still have hope! :) You're working hard to get well, and you WILL one day drive again. Little by little, you'll get there. And I'm so glad to hear you found things that help with that!

    Re: XMRV. I kind of gave up on CFS research a while back. It was always so disheartening to read all the varying, contradictory reports, so I personally have decided not to get too into these things until something is conclusively proven multiple times over heh. Just too many ups and downs otherwise for me!

    ReplyDelete
  5. Thanks for you comments again everyone :)

    Judson, I'd love to have signed your petition but it's only open to people in USA and I'm in Australia!! I do hope you get lots of signatures though!

    ReplyDelete
  6. It's one of those Acceptance Moments isn't it? In your position I'd be doing exactly what you are doing - put it on ice until you are ready to drive it again. After all, if you do have a better day, you can always hire one.

    Don't give up hope. It may get worse before it gets better, but there will be better times.

    Support stockings - phwoar!!

    ReplyDelete
  7. Some really big steps Lee Lee:
    Car --- I did that too for a year but then gradually felt better enough to drive for short distances (essential here cos we're 3 miles from any shops, schools etc) Is it possible to lend your car to someone -- friend/relly etc so it's there if you feel able to pick up driving again at some point ?

    Supps: seems like you're beginning to discover what works for you and I think that's really important because it's different for everyone

    Stockings: Wow what can I say ? Suuport hose ! Darling anyone who's anyone is wearing support hose..you've started a new trend: Madge, Gaga, Obama, Kath n Kim, Kylie are all baying like hounds for support hose and all on the waiting list and there's you with a pair already ! You lukcy devil. Why not start a new Ebay shop with designer support hose ? You could call it 'Grip': 'Grip' by LeeLee.... Has a ring doncha think ?

    XMRV...think you're right there too. There are always hot new discoveries and stuff to get excited/agitated about in this 'game'.Best to sit back, stay cool and look afetr No.1 and see what happens.

    You're doing great :O)

    ReplyDelete
  8. I'm sorry about the car - but maybe look at it like "for now" it doesn't make sense to pay the insurance and registration fees. I know acceptance is a big thing to have to deal with and I'm sorry that you are having to let go of another part of your former life.

    I'm glad to hear the supplements are helping. I've been trying to get my CFS doc to let me do Vitamin B injections for awhile now, but he indicated that most people didn't notice any dramatic change - I will definately be more forceful about trying now that I have heard it is helping you.

    I had to wear compression stockings at one point after an ankle surgery - aren't they lovely? LOL - my favorite part is peeling them on and off - yeah nothing says sexy like that (LOL).

    I don't even know what to think about the XMRV controversy - especially since I'm in the US and trying hard not to believe there is some conspiracy going on.........

    Hang in there my friend - we are in this together.

    ReplyDelete
  9. Freedom from having to drive and from paying for the insurance could be a good thing. You can always get the insurance again when you want it. Also car co-ops and rentals when you feel up to it, no obligations then.

    The XMRV stuff is baffling my mind with the usual academic rivalries and such of research. I rest my current hope on the OI research which is currently proven, since it is my major symptom. Seems like if a person has a blood pressure drop of 10 points when they've been upright for a while that should be enough proof of a physical illness, since all the OI problems go along with that disregulation.

    Support hose, yes, I think I will try those, too. Can always go for the full-on g-suit if the hose works! Each bit of progress is so satisfying, isn't it? :)

    Triple word points for use of the word 'fetching'! I've only ever heard my mum use it and it always sounds cute. :D

    D.

    ReplyDelete