Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Wednesday, December 21, 2011

WHAM!!!!!

I took a risk and attended a reunion of friends three hours south of here in Minnesota over the weekend. It was so nice to see these folks again. The tough part was dealing with the M.E. fatigue/weakness/fluiness, but we had a house rented where I had a bed I could retreat to which helped.

Before I got M.E./CFS 9 years ago, me and some women friends planned a fund-raising expedition that would take us across much of sub-arctic Canada by ski and dog team. We planned the whole thing including raising many of the sled dogs from pups. Unfortunately part way through the planning years I came down with a severe mono infection and as you know, failed to recover....

However, I am still good friends with most the woman and it was so nice to see them again (as well as two children that have come along in the years since). The third and last day of the visit was a let down as 4 people came down with stomach flu. I thought I had escaped until yesterday morning. I won't go into the details.

36 hours later I'm still quite ill, although I am keeping down a little fluid now. On top of it, I believe I have my post visit crash setting in (it's really hard to tell stomach virus weakness and fatigue from the M.E. sort, however, as of this morning my breathing is painful and achy which is a classic M.E. crash).

My NP called this morning to let me know about my blood work from last week. My ANA and rheumatoid factor were normal, however, interestingly I do have a low B12 level, low Ferritin (down to 7 now but haemoglobin's OK), as well as a low WBC (I think she said 3.4) with mild neutropenia (maybe 1.2?). I have a choice of supplementing the B12 with pills or getting shots and I'm going to get the shots, despite the fact that it might mean an extra outing once a month. I've heard such good things about them.

So that's what's happening here. Despite the stomach virus and the crash, I'm still glad I saw my friends. I'm hoping that I pick up a little before Christmas, though. I'm also hoping that fighting the stomach virus doesn't send me back to pre-Dec. levels of M.E.


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6 comments:

  1. jenjiDecember 21, 2011 at 1:32 PM

    I'm happy to hear that you made it out and about to spend some time with good friends. Did you all get food poisoning? Or was it just some bug?

    Yes, yes. Get the B12 injections. Supplements are useless for CFIDS/ME and as I've explained before if your B12 serum is low, then it's even lower in your CSF, which is where it really counts. These injections may make a serious difference in your tremors and also somewhat so with fatigue. I'm so glad to hear that you're making the injection leap. Also, for the love of God will you please get yourself some CoQ10 and make that investment as well?

    My ferritin was low as well and my sleep doc told me that having low ferritin can really cause havoc with sleep cycles. Will you be taking a ferritin supplement as well?

    Oh, by the way, I can understand the effort it takes to venture out just for an injection. I did so for about 6 months until I had finally had enough and asked the doctor to show me how to self inject so that I wouldn't have to drag myself up for an appointment every time. Both me and my Mother have done injections for B12 and when we're not able to meet up, I can give them to myself if I have to. Otherwise, it's a needle to the arm from Mom. She's really good at it too. She used her iPhone to record the nurses instructions and she's been doing them pretty much ever since. It's been about 2 years now altogether.

    I'm happy to hear that you're making some progress, both physically and socially.

    Happy Holidays if I don't speak with you.

    best,
    jenji

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  2. Lee LeeDecember 21, 2011 at 2:39 PM

    I used to get the B12 shots before I was housebound. Now I take a B12 Sublingual daily and for me it is every bit as effective as the shots were ...

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  3. upnorthDecember 21, 2011 at 2:56 PM

    Jenji, I haven't had success with upping my low ferritin as I can't tolerate any of the pills without major stomach distress. I am on a liquid natural replacer now which I can tolerate OK. I think part of the issue with these low levels might be connected to gut in the first place. I'll be around the next week or so...maybe we can chat?

    Lee Lee, thanks for the info. It's good to know that the sublingual worked just as well for you. Did you have low levels? If my M.E. is flared, I have trouble with any outings. Maybe I'll do a combination?

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  4. Sue JacksonDecember 21, 2011 at 3:02 PM

    So happy to hear you were able to get out for the weekend and enjoy your friends!!! It's a shame the weekend had to end with a stomach virus!

    My son recently started B-12 sublingual pills, but now his doctor wants him to try the shots - she said they'll help more. We haven't ordered them yet because his situation with Lyme has been so bad - I wanted to get him stable before we try changing anything.

    Hope you are feeling better - remember all those laughs and conversations with your friends!!

    Sue

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  5. ReneeDecember 21, 2011 at 7:33 PM

    Hi Upnorth
    So glad you were able to be with friends...so awful you got the flu! And the ME crash..ugh~ Joel takes B-12 shots and if he stops them his energy levels go down to a noticable level. Joel gives himself the shots...3-4 times a week now...it is not hard to learn to do...I used to give our daughter shots too when she was young.
    I hope they help you the way they have helped Joel.

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  6. upnorthDecember 22, 2011 at 7:44 AM

    Sue, I hope your son feels better soon. Thanks for the info on the shots, I think I'm sold....And Jenji and Renee, perhaps she'll give me some to do at home. I'm not squeamish so could probably so them myself.

    ReplyDelete

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