Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
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For May 12 — Life With ME/CFS for 23 Years: Casting Light on Invisible Illness

Discussion in 'General ME/CFS News' started by Jody, May 8, 2015.

  1. Jody

    Jody Senior Member

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  2. AndyPandy

    AndyPandy Making the most of it

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    Thank you @Jody for speaking up for all of us :bouquet:

    Best wishes, Andy
     
  3. Jody

    Jody Senior Member

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    Andy,

    I'm happy to do it any time I have the chance.:)
     
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  4. Hutan

    Hutan Senior Member

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    Good on you, Jody and best wishes to you and your son.

    My two children and I also get worse in the winter (we all have ME/CFS) - I was very interested to see you had noted that pattern too.
     
    MEMum likes this.
  5. Misfit Toy

    Misfit Toy Senior Member

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    To May 12th and to the summer making this illness bearable. Always feel best in the summer. The sun, the possibility of swimming for my fibro, the easy dressing. Flip flops, t-shirts and shorts. Easy!

    Thanks, Jody.
     
  6. Jody

    Jody Senior Member

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    Hutan,

    I've discovered that taking vit. D3 year round seems to make a difference, preventing the worst of the autumn and winter drop. I take 10,000 IUs a day. 8,000 IUs help, but 10,000 makes a greater difference. I take chocolate chewables:) which means I don't have to swallow tons of pills a day.
     
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  7. Jody

    Jody Senior Member

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    Misfit Toy,

    Summer is the best.:) Have you tried vit. D3?

    Love your avatar by the way.:)
     
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  8. Misfit Toy

    Misfit Toy Senior Member

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    Jody, thank you! I love the book the avatar is from.

    I am on vitamin D 5,000 IU a day, yet it does zip for me. I have SAD bad and the sun makes all things better. I wasn't like this until I hit my 40's. Winter was always my favorite time of year.
     
  9. Jody

    Jody Senior Member

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    Misfit Toy,

    Purely speculation here on my part ... When I was taking 5,000 IUs a day, I didn't notice any improvement. It takes 10,000 to make a real difference. It's enough to keep me from crashing through the rest of the year.

    There is nothing like the sun though, gotta agree with that.:)
     
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  10. JaimeS

    JaimeS Senior Member

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    Thank you Jody! I tried to post a comment there, btw, but the site swears the captcha isn't right. :( Three times.

    -J
     
  11. *GG*

    *GG* Senior Member

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    Wow, @Jody didn't realize your son has ME also. I can PM you if you don't want to discuss it here? How long has he been ill? Must be good to have a mother with some life experience with the illness. Didn't realize you had 5 kids also! Cool, I am one of 5 also :)

    GG
     
  12. Jody

    Jody Senior Member

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    JaimeS,

    Where did you try to post? On EmpowHER? That's too bad that it glitched on you. I appreciate the attempts.:)
     
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  13. Jody

    Jody Senior Member

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    GG.

    I am also one of 5 kids:) Jesse has been sick since he was 16, almost 9 yrs. He will be 25 yrs old this month. He is in better health this year than he's been in for many years. Better stamina, cognitive, appetitie and digestion, and sleep. I will tell him you were asking about him. He will appreciate it.:)
     
  14. *GG*

    *GG* Senior Member

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    Sure, please do. Take it he is not on the forum? So has he been able to get on with his life? School/career etc..?

    Has what helped you, herbs and supplements. A naturopath, right? Been helpful for him also?

    GG
     
  15. SOC

    SOC

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    Ditto, vit D3 at relatively high dose year around seems to reduce, even prevent, the winter collapse. I have a hard time keeping my D3 up in the normal range, but I'm not up to 10,000 IUs, just 7500 IU of liquid sublingual. Easy peasy to take, no huge pile of pills. :)
     
  16. Hutan

    Hutan Senior Member

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    Thanks Jody,
    We were found to be mildly deficient in Vitamin D even though we get plenty of sun and eat oily fish. So we have been taking a Vit D supplement along with all sorts of other things. But you are taking much more than us, so I'll look in to bumping up the dose and see if that helps. It's probably time for some more blood tests to see where we are at and I should read up on vitamin D supplementation.

    We are heading in to winter here in Australia. My son started back at school this year after two years off and his attendance has slipped from 4 days a week in the term before Easter to only 2 days these last few weeks.

    Happy summer to you.
     
  17. Jody

    Jody Senior Member

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    SOC,

    It's amazing stuff isn't it.:)
     
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  18. Jody

    Jody Senior Member

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    Hutan

    I know not everybody goes through the summer/winter thing like I do, but I suspect that for those of us who do, vit. D3 could be a major player. Based entirely on my own personal experience, mind you.:)

    If makes so much difference in how I feel. If I can't get any for a couple of weeks, a slow, steady devolution begins to occur, affecting my breathing, my cognition, my physical stability and stamina, and my general mood.

    I sympathize with you and your son, who is having such a struggle with school.
     
  19. Jody

    Jody Senior Member

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    Jesse isn't on the forum, no. He had a part time job a couple of years ago that was terrible for him. Physical work cleaning a mechanic's shop for 5 hrs every Saturday. Could not have been worse for him. By the end, his POTS and OI would flare something awful as he got ready for work. He'd have to lay flat on his face on the couch for half an hour trying to breathe right, and the last two times he went, he actually fell down on his way to the front door.

    Body was yelling pretty loud about it wouldn't you say?:)

    He always found that the symptoms would settle down once he got to work but he also was recuperating for the first half of the week after he worked. I finally said, I think you should quit. He did, and started to heal up better. He wanted to make some money, and this was the only job open to him, and he stuck with it (despite our misgivings) for about 2 yrs.

    But the money wasn't worth it in the long run.

    He isn't working or going to school. In the last year, he has become able to take the dog for a 20 min. walk. He and I often go together as well. He no longer spends his whole day in his bed -- he has computers in there so is not laying staring at a wall thank God. He has decided he is responsible for doing the dishes, and does what he can to help out me and his dad through the day. Very conscientious guy.:)

    His sleep used to be -- awake 36 hrs, sleep for 12. Finally getting near normal -- awake till 4 am or so, sleeps till noonish, but doesn't look so living dead when he gets up. Short term memory is crap but he can have long conversations now and not have to go to bed. Joins family gatherings and doesn't have to retreat to his room after 10 mins any more. He was able to walk me down the aisle at his sister's wedding a year or so ago and was so happy and relieved to do that and be able to get through the reception with everyone.

    He would be capable of doing a few hours work a day on his computer -- tech type of stuff, or editing, that sort of thing. But mostly he is just convalescing.

    In my case, my naturopath has made the most difference, and a low carb diet. A low carb diet absolutely doesn't work for him.:) Trying to avoid grains which he thinks he reacts badly to, but loves carbs like potatoes.:) I try to load him up with good carbs and good fats, and a little of the meats he likes. He can't handle eggs, unless there is a little ham in it or bacon beside it.:)

    He takes omega-3 oil and vitamin D daily. I think that helps too.

    None of the other supplements I have thrown at him over the years seemed to make a difference. And he just couldn't keep up with them. In his first year, I found a pile of pills and capsules stashed in his closet. He couldn't face swallowing all those things -- didn't have the energy to do that or even to tell me he couldn't take them. Man, he was so sick.

    He gets boils on his neck, lower jaw, behind his ears, that we have found respond to castor oil, tea tree oil, acupuncture, and Lymphagen ointment. This is a symptom you never hear about, but apparently it is fairly common for chronically ill people who don't move around a lot to get this. As their immune system heals this symptom also starts to go away.

    He says he thinks it is mostly having gotten all this (unwanted:) rest over these past 8 or 9 yrs that is why he is getting better. and now that his sleep is approaching a normal range, that seems to be speeding things up a bit, maybe.

    The fact that I can make a living, and life is less terrifying has to be a factor as well, I think. All of us are doing better knowing we have money coming in every month.
     
  20. Misfit Toy

    Misfit Toy Senior Member

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    Jody,

    Excuse me for not knowing this but do you make a living by writing? Is that your sole way of bringing in income? That's wonderful.

    I am glad your son is getting better. And his sleep is, too. That's really important in getting better.
     

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