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Update on Alex3619: in hospital but doing well

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

  1. Sing

    Sing Senior Member

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    I have been away so long, I am just reading through today. I feel badly that I missed knowing of your accident, Alex, because I would have written too, to let you know I also care. It has also been wonderful to hear the voices of this community which I have been getting to know and becoming fond of over the past several years. Your accident brought us together as a community, which really feels great!

    I went through a long saga too, of surgery, hospital and long rehab, with a hip replacement job four years back. Like you, living alone with the daily struggles, OI, brain fog, weakness, accident prone. It is noteworthy how much assertiveness, monitoring, management and patience it took being in institutional care with a very marginal brain. I barely coped with these challenges and the next time I may not be able to. Then what? I need to get some T shirts printed up with Not Well Enough To Be Sick, for my hospital stay.

    The long bizarre struggle to get computer access was awfully familiar too.

    Then the wonderful comments about all the ironies and contradictions in how people see us and misconstrue what they see, plus our attempts at managing our presentations and the success/failure of these. I am up for more sharing on this subject!

    Well, Alex, I hope you hit the ball out of the park when you start writing to health administrative authorities in your country. I think you may have a new job for a time, as you have tracked some of the dysfunctions back into their sources. And if your voice really does sound like James Earl Jones, I suggest that you also consider making phone calls or being interviewed someplace public, because when James Earl Jones talks, everyone listens...
    Koivy, leela, ahimsa and 3 others like this.
  2. alex3619

    alex3619 Senior Member

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    Hi Sing, I think we all need those T-shirts: Not Well Enough To Be Sick.
    leela, WillowJ, ahimsa and 2 others like this.
  3. Sing

    Sing Senior Member

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    Hi Alex, I am glad you appreciate my sick humor! When I am being questioned by a doctor or nurse about my history and they ask about whether I have ever used alcohol or recreational drugs, I always reply that I have not been healthy enough to do those things. I can see their minds kink up with this answer as it possibly dawns on them what I am trying to convey. But my idea is out of their lexicon of ideas, so it doesn't go anywhere.
  4. Sing

    Sing Senior Member

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    Alex, I just watched the latest ME-CFS Alert video, an interview with Dr. Kenny De Meiler (can't recall the spelling). He observes that in the thousands of patients he has treated over the years, there seem to be considerably more people with ME-CFS from the Scandinavian and the northern parts of Great Britain than coming from elsewhere. He thinks there may be a genetic susceptibility to developing this illness in people of this ancestry. (The Vikings got around and invaded a lot of places--northern France, the Normans, and a lot of Great Britain, so not being Scandinavian in ancestry does not automatically exclude anyone from this.)

    When the conversation was about kilts, you mentioned your ancestry and this idea fits. It fits with me too as I am mostly Scottish, then English and a bit of German. I even look the most northern of my siblings and turned out to be the one of the litter who got this illness.

    Well, we need ideas which fit us as much as we need clothing and other things which fit--
    warriorseekspeace likes this.
  5. warriorseekspeace

    warriorseekspeace

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    I am largely Scottish on my mother's side, too, in remote history, I'm told. But on my father's side (don't know him well) supposedly Irish, although that could be also "Scots Irish." I recently (two months ago) found out my father also had glandular fever when he was in his early twenties in college. Hmm.
    Sing likes this.
  6. ahimsa

    ahimsa Senior Member

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    Ditto for me. I have just about the same ancestry so I guess I fit the Viking theory. ;)

    Honestly, I've never been than interested in my ancestors. But my parents, esp. my father, have done a fair amount of research over the years. I don't remember most of the stories but I do remember one about a Scottish name from my family tree, Colquhoun (anglicized to Cowan).

    This clan's motto is "Si je puis" which apparently translates to "If I can." Seriously? IF I CAN? I'm sure there's a good reason for that phrase but it sounds so silly and wishy-washy without any context.

    On the other hand, I must admit that IF I CAN is a great motto for someone who has ME/CFS! It underscores the uncertain nature of any commitment. Just add it to the end of any statement, e.g., "When's my next appointment? Thursday at 2 PM? Okay, I'll see you then." (... IF I CAN!) :rolleyes:

    I swear I am not making this up! I even have a pin with this motto on it that my parents brought back from their trip to Scotland about 35-36 years ago. Of course, it's possible that someone made it up back then to sell souvenirs to American tourists. :D
    Sing likes this.
  7. Sing

    Sing Senior Member

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    Well, those Scottish clans had such a warrior ethic that my guess is that your motto instead refers to the utmost in fortitude and perseverance. About it being French, I have only recently learned a bit of Scottish history. Sometimes they were allied with the French against the English. The northern French, the Normans of Brittany were of their blood and culture anyway. The megalithic stone circles, later the Viking invaders who made the rounds of all the women, sharing their genes.....
    ahimsa likes this.
  8. alex3619

    alex3619 Senior Member

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    Just to let people know I am progressing slowly but still progressing. Today I am actually getting some moderate work done toward my book, a good sign. I am also walking to the kitchen and back without thinking about it, though its with a severe limp. I am hoping to crank up my advocacy again very shortly.
  9. Marg

    Marg Senior Member

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    Good to hear Alex!
  10. physicsstudent13

    physicsstudent13 Senior Member

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    by the way I had tracheotomy surgery that was traumatic- what is the recovery time you should take to rest before going back to stressful activities? It's been a few months but I think I don't have my total energy back. I'm pretty concerned about my heart with mitral valve prolapse, chest pains, palpitations and EKG problems with right bundle block, enlarged right atrium
  11. alex3619

    alex3619 Senior Member

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    Hi physicsstudent13 , there is no easy answer for you. It depends on you, your health, and not a schedule. If it takes longer, it takes longer. If you can get back faster (usually not the case for someone with ME or CFS, fibro etc.) then that is good too. Its about the patient, not a timetable.

    I am still not recovered. I still haven't written my blogs I scheduled for March or later. I am doing comparatively little toward my book - some but not enough to finish in my lifetime. This is because I am below the threshold where I can concentrate sufficiently to do any serious reading or analysis for more than a minute here or there.

    The good news for me is that a part of this might be a worsening of one of my medical conditions ,which now allows it to be treated: haemochromotosis. I crossed the magical threshold from "subclinical" to "clinical", so now according to the numbers doctors are allowed to treat me.
    L'engle, peggy-sue, Ritto and 2 others like this.
  12. physicsstudent13

    physicsstudent13 Senior Member

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    sounds pretty bad- isn't that a blood disease, you should see a hematologist then
  13. peggy-sue

    peggy-sue

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    I wasn't here when this happened, or my bestest wishes would have been added a long time ago, Alex.
    I'm hoping you will get proper treatment for the haemochromotosis; if it's something recognised and treatable, you might be in for the lovely surprise of being treated as if you actually are sick, and get looked after.

    Most of all, I hope you get your brain functioning back. You must be going round the bend without it!:hug:
    MeSci and alex3619 like this.
  14. alex3619

    alex3619 Senior Member

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    Lol, I have my moments. ;)
  15. alex3619

    alex3619 Senior Member

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    Its a genetic disorder of too much iron. The body has almost no way of getting rid if iron aside from bleeding. My iron levels are still low enough that it would not be expected to produce symptoms, but given ME, sleep apnoea, possible methylation issues and probable ongoing enteroviral infection, nobody knows what the safe level of iron is.
  16. Gemini

    Gemini Senior Member

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  17. L'engle

    L'engle moderate ME

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    alex3619. I can't even imagine how that works with low blood volume and POTS. If the low blood voiume would make a lower safe threshhold or mean that the blood giving would make you woorse. I guess no one knows. I hope it doesn't make things harder for you. I have the opposite problem, I got anemic over the summer and am now recovering.

    physicsstudent13. Sorry to hear. Unfortunately trying to put yourself on some sort of schedule for how long it takes to get back to normal will set you up for potential disappointment and frustration. I am still working on this one myelf. I haf something I wanted to complete this summer but only got the first week of assignments done and was not able to get back to doing more. Timelines work great for healthy people who need to keep themselves motivated, but are just a tease if you have anything more than mild ME.
    warriorseekspeace likes this.
  18. alex3619

    alex3619 Senior Member

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    Very occasionally a person with haemochromatosis and low blood volume does get into trouble. Until I start treatment, maybe in a few days, i wont know.
    L'engle likes this.
  19. physicsstudent13

    physicsstudent13 Senior Member

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    so sorry to hear that Alex
  20. physicsstudent13

    physicsstudent13 Senior Member

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    anyway if you ever wake up from surgery and are incredibly foggy and exhausted it may mean you have liver damage

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