1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Update on Alex3619: in hospital but doing well

Discussion in 'General ME/CFS News' started by WillowJ, Feb 27, 2013.

  1. Jarod

    Jarod Senior Member

    Messages:
    712
    Likes:
    379
    planet earth
    Ha! I had a feeling that would happen! :)
  2. maryb

    maryb Senior Member

    Messages:
    2,325
    Likes:
    1,234
    UK
    Alex - embroiled in disability politics? - nah never:D
    Sing likes this.
  3. searcher

    searcher

    Messages:
    410
    Likes:
    1,035
    SF Bay Area
    Welcome back Alex! I hadn't posted on this thread but have been watching it; I am so glad that you are getting better. I think you should take a picture with the hospital staff at the end of your stay :)
    Sing likes this.
  4. MeSci

    MeSci Activity level: 6

    Messages:
    2,270
    Likes:
    2,382
    Cornwall, UK
    Welcome back, Alex. Glad you seem to be in good spirits and not half-crazed with frustration at lack of internet access. Hope the leg is doing well.

    Well done on the disability politics - go for it! (But take it easy for your own sake.)
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    5,324
    Likes:
    3,665
    Albuquerque
    Whee! Alex is back--with hospital adventure stories.

    Hope that the break "from us" has given you good thinking time.

    Keep those short posts coming!

    Best wishes,
    Sushi
    Sing, Little Bluestem and WillowJ like this.
  6. snowathlete

    snowathlete

    Messages:
    1,961
    Likes:
    1,840
    UK
    Hi Alex, its great to have you back, even if it is only Alex-lite until you get more internet access. Hope you are feeling ok and make a speedy and full recovery (yes, full, even better than before, I hope).
  7. Shoesies

    Shoesies Senior Member

    Hi Alex! Hoping you are giving those nurses hello and having a better day. Hurry up and get out of there, those places are dangerous!!
  8. WillowJ

    WillowJ Senior Member

    Messages:
    2,595
    Likes:
    1,712
    WA, USA
    Alex! so happy you are online (at least partly). I imagine you are thrilled about this, too. :)
    It's good to have an end in sight to you hospital stay also.

    aww, thanks. :)

    It wasn't me that rang your apartment, though. I enlisted help since I don't have your home phone number (they were happy to help). Did take some sleuthing to find your hospital number, though.
    snowathlete and Sam Carter like this.
  9. warriorseekspeace

    warriorseekspeace

    Messages:
    72
    Likes:
    46
    Florida
    Hi, Alex! Just saw this thread (only on here rarely now). Haven't read it all, but so glad you're back in touch.
    Good recovery! I wish I could be your PT!
    WaSP
  10. alex3619

    alex3619 Senior Member

    Messages:
    5,950
    Likes:
    7,803
    Logan, Queensland, Australia
    Hi WaSP, I wish you could be my PT too! You I could trust and not be guarded around. Best wishes, Alex.
    warriorseekspeace likes this.
  11. alex3619

    alex3619 Senior Member

    Messages:
    5,950
    Likes:
    7,803
    Logan, Queensland, Australia
    Oops, thirty five new alerts on checking PR this morning.

    Most of my involvement in disability politics in hospital will have to wait till I get home and full internet access. I am making notes though, and intend to send off like a hundred emails. What I discovered, surprise surprise, is that disabled hospital inmates can be relegated to second class citizens. Its not the nurses, docs or other hospital staff, its institutional failure in how things are designed, a subject which will be a big part of my book.

    Politics features heavily here now. The illustrious Premier of our state, Campbell Newman, is using good engineering principles to slash and cut state expenditure. The problem is a state is not a machine. Oh well. In any case I was moved out of Logan hospital in part due to them being told that half the operating theatres were closing, many of the nurses were having their contracts ended, and twenty beds were lost from the hospital. The day I moved out was two days after the "deadline" for closing the twenty beds, and they were scrambling to find places to put patients. Since I was doing OK I got sent to a small country hospital - its a nice place but lacks modern infrastructure ... why can't I use hospital wifi? The answer is simple - they only have enough capacity for the doctors.

    I finally found where notepad was hidden on my computer so now I can write longer messages then cut and paste.

    My local physiotherapist is muttering about graded exercise, though she seems unaware I have ME and I do not stress the point. Four days before I broke my leg, 21 feb, I was crashing so took a second resveratrol. Next day I was fine. Then the day after. Then the next one. Then I slipped on a wet tile floor while helping my shopper bring in my groceries, and so fast I did not know what was happening I found myself on the floor with my foot at a funny angle. The first thing I said to my shopper was "I think I broke my leg" in a calm voice. There was minimal pain, but I started passing out (shock/OI) and had to breath heavily to stay conscious.

    I can confirm that for the most part having ME is far more painful than a broken leg. Setting my bones under painkillers was worse than most of my pain with ME though. However I got lucky with surgery - they thought I would have to wait a whole week before they could operate due to swelling, but I had little so got right into surgery. They tried a spinal injection for pain but kept getting it wrong and it was exhausting me so I asked to be knocked out. They put a plate and several steel pins in to hold my bones together - they were a bit shattered. On morphine I had almost no issues with my foot, and only a couple of times asked for increased pain meds - mostly I was about reducing the meds as fast as possible.

    Something funny happened in recovery when I woke up. I was disoriented. I looked around at the sterile looking hospital room and was thinking "I don't recognize this computer game." I couldn't even find the mouse! Then I figured it out. The recovery nurse had a good laugh when I told her.

    I have been assessed every which way. Occupational therapists, social workers, physiotherapists, orthopedic surgeons etc. In one medical history I mentioned ME, but this got translated to CFS in my notes. They don't recognize ME. However I have been downplaying diagnoses and focussing on issues. They assessed my capacity to cope in a full cast from lots of perspectives and decided to keep me till I could put weight on my foot. That takes six to ten weeks. I am hoping for six.

    My point is writing this last bit is this: when I get home I will get an additional review (social/OT) to make sure I can cope, have groceries, etc. I will get options for home delivery of meals. When will this be available to ME patients? When do they get ANY practical review? When is it going to be recognized, in practice and not theory, as a highly disabling condition?
    Things need to change. Things can change. We just have to figure out how to make it happen.
    aimossy, Sing, ahimsa and 13 others like this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    1,893
    Likes:
    1,235
    Midwest, USA
    Maybe you will have a part in making it happen. If they continue to monitor you after you return home, they may see that even after your leg heals you are disabled and continue to provide you with appropriate services. At least we can hope.
    ahimsa likes this.
  13. Bob

    Bob

    Messages:
    6,267
    Likes:
    6,532
    England, UK
    Yay! Great to have you posting again Alex! :)
    Your hospital stories are very entertaining. Keep them coming!
    It is ridiculous how much support you get offered for a broken leg, compared to what we get offered for ME.
    I had no idea that they offered so much support for someone with a broken leg. It sounds like they are looking after you well.
    Sing, justy, ukxmrv and 1 other person like this.
  14. leela

    leela Slow But Hopeful

    Messages:
    2,283
    Likes:
    2,355
    Couchland, USA
    So glad to have you "back", Alex!

    May Raven Hair take you under her wing ;)
    aimossy likes this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    5,950
    Likes:
    7,803
    Logan, Queensland, Australia
    Bob in post 113. There are extra issues here. My OI and syncope mean I am at an extra fall risk. Added to which it is clear from my physical functioning (which is at its best since about 2002) creates a fall or injury risk when using stairs. Added to that it is clear I am unfit, and my leg is not a simple break - I am now a walking metal detector activator. However, these checks are standard in the hospital system for many things I think. At home checks should (but are not) be standard for all released patients, including ME patients. I already receive some home help with cleaning and shopping - if I were worse I could get more. Australia is also implementing a National Disability Insurance Scheme which means all disabled should be covered for basic services including home help. This is a benefit because it keeps disabled people out of nursing homes and hospitals. I am well aware though that such a scheme is impossible during economic crisis - the USA and Europe would probably not be in a position to consider it for some years, and they might have the Australian example to learn from - so lets hope it works.
  16. snowathlete

    snowathlete

    Messages:
    1,961
    Likes:
    1,840
    UK
    Oh Alex, it sounds awful what you went through, though it sounds like you coped with it all very admirably. I am also hooping it will only be 6 weeks for you not longer.
    You raise some very good points about the way things are and how messed up it is.

    I think the UK could easily implement such a scheme for disabled people though, as early as this year - the rate they are going no one will qualify for disability soon anyway, so schees for disabled people will be cheap; it will only cost them the £50 million for the failed IT system to set the scheme up. ;)
    Valentijn likes this.
  17. alex3619

    alex3619 Senior Member

    Messages:
    5,950
    Likes:
    7,803
    Logan, Queensland, Australia
    What disabled in the UK snowathlete! One eye, one arm, one leg, some fingers and toes - ATOS assures us this is all that is needed to be fully abled (only joking). ;) As long as you can say hello and not drool too much any employer would be glad to have you. I mean DWAP and ATOS wouldn't lie, they are with the government.
    Valentijn, ukxmrv and snowathlete like this.
  18. JT1024

    JT1024 Senior Member

    Messages:
    521
    Likes:
    260
    Massachusetts
    Glad to see you posting Alex! So sorry for all you've been through.
    Get well soon!
    Sing likes this.
  19. Traskin

    Traskin

    Messages:
    5
    Likes:
    18
    Sacramento,CA,USA
    outstanding! glad to see your back on again alex. i was starting to worry if they wouldnt deliver the laptop either. i bet your going thru a huge sigh of relief bieng back on net again. a month away is hard for any junkie :p:p

    hmm ashley scott..... does your cell have a camera? :) you can tell her its for a lonely soul from the states, im sure she will go for it. hehehe

    youll have to send out what email you can access right now since i doubt you can remember your regular email settings off top of your head. hmm, which also gets me thinking, wonder what pbem,play by email, games are out there. hrmm

    glad ur back alex! will prob give you a quick call in next few days. and this time i will check the time first. aaargh what a maroon. *slaps myself*
    allyb likes this.
  20. allyb

    allyb Senior Member


    Hi Alex,

    It's so good to see you back. I note you have been kept busy with hospital politics and it sounds like you are being looked after by a rather handsome/attractive bunch.

    Ruby reading.jpg

    You didn't mention a 'red head' so this is Ruby (real name)
    She is an advocate for ME (myself)

    she said the only GET she would advocate is GET well soon (please)
    And she is sooo looking forwards to proof reading your book.

    She doesn't do CBT she says she CBA. :rolleyes:



    Apologies for not posting sooner, I myself have been away from the forum with low level functioning which is very isolating. I hate not being well enough to reside on PR even though I'm not the most prolific poster, I miss the presence of others, I miss the ‘SHARED HOPE’ and communal search for a way out of this holocaust of an illness. I miss the humour (and the American humor) I'm looking forward to your hospital memoirs. ;)

    Kindest Regards
    allyb :hug:
    aimossy, Sing, ahimsa and 1 other person like this.

See more popular forum discussions.

Share This Page