My M.E. Story 2

When I posted my first M.E. story video recently, I didn’t realize I was was going through another viral reactivation. I initially thought I was just dealing with a prolonged, severe crash. It turned out to be another viral reactivation episode for me, which meant substantial exacerbation of all M.E. symptoms. I didn’t realize this until I started getting new pain from shingles. In retrospect, I should not have done any kind of “strenuous activities” such as making videos and rest in bed as much as I could. I should have known better to do nothing while feeling so sick to need IV fluids. Oh, well, hind sight is 20/20. I was just enthusiastic about participating in M.E. awareness movement (especially Chilli M.E. Challenge), and wanted to act on it, especially because I was feeling lousy that week.

After noticing the nerve pain that I associate with shingles (I can distinguish it from postherpetic neuralgia), I panicked. It was my 5th time since last October, and with each viral reactivation (shingles is caused by the reactivation of chickenpox virus, or varicella zoster virus), my M.E. has been worsening dramatically. At that point, I was already mostly bed-bound  and experiencing shortness of breath just from sitting against pillows. I knew I still had not hit the bottom yet based on past experience, so I went to the hospital, hoping they might be willing to do some aggressive therapies to minimize the damage to my body.

Now I am back home, still bed-bound, after spending 8 days at the hospital. I wonder if I never went to the hospital and tried to just rest at home, I’d at least be able to stand up for 30 seconds to get to the restroom. But I can’t play what ifs and the reality now is, I am a severe M.E. patient. While at the hospital, I also tasted what it would be like to have very severe M.E. During those moments, I was practically paralyzed and could not eat, drink, or speak. I think it really solidified my resolve to be an active part of M.E. community. I am not going to wait passively hoping for a cure, knowing in the future, my mind could be trapped in the shall of my body.

I recorded this video on my last day at the hospital. It’s been a few days, and I’m just getting around posting it. I am so thankful about tech gadgets that let me still be a part of the world even if my body is confined on my bed. Please watch my video posted below, and make a donation for M.E. research.

For donations:

GoFundMe for Chilli M.E. Challenge
End ME/CFS Project @ Open Medicine Foundation
CFS Research Center @ Stanford

For UK: Invest in ME

After thought:
You will see me pause frequently while talking and it is due to cognitive impairment caused by M.E. My language errors (that cannot be blamed on English being my second language!) have become more and more noticeable past couple of weeks as my M.E. worsened. If you see glaring errors from anything I write, you know why, so please don’t judge me! It is difficult enough to write while stuck in bed and getting drained just for being awake, so I apologize for being unable to proof read my writings.

Please check out #chilliMEchallenge for other stories and funny videos!

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8 thoughts on “My M.E. Story 2

  1. Simon says:

    Hi Marina. I hope you feel a bit better soon and I think it’s really important that you’re getting the message about severe CFS/ME out there. Can’t write any more as my cognitive symptoms are too bad.

    best wishes

    Simon

    Melbourne, Australia

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    • Hi, Simon. Thank you for taking time and effort to leave a comment despite your symptoms! I’m doing much better than when I wrote this piece in the spring. I hope things get better for you soon as well!

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  2. Stephanie (Stevie) Stultz says:

    I am SO sorry you are going through this. I’ve had severe ME/CFS for 13 years and know, all too well, how awful the symptoms are. I too, have regretted going to the hospital for treatment for anything as I always seemed to end up worse than before I was admitted. Part of dealing with this illness is also being able to distinguish if all the symptoms are coming solely from ME or other things which can be caused by POTS (postural orthostatic intolerance), like not being able to sit up at all. A large majority of ME patients have POTS. I do, and after I was put on Fludrocortisone and additional sea salt every day, I experienced a marked increase in how long I was able to sit up, then stand for a few minutes. Also, over time my cortisol production declined and I had to be put on oral Hydrocortisone (HC) and essentially now, I have Addison’s Disease. But, being on the HC has also improved my quality of life to a small extent. It’s enough now, that at least I can stand long enough to heat a meal, or feed my dog or walk outside in my back yard for a few minutes. There are millions of people worldwide now with ME, so you are not alone, although I’m sure it feels that way sometimes. Hang in there!

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    • I do have POTS associated with ME and definitely it is the big part why I can’t sit up. But it’s just putting a name to many symptoms that worsened, in my case. I have been on fludrocortisone and salt tabs like you, and they really helped increase my sitting tolerance greatly, until I started coming down with a viral reactivation episode. I went to the hospital hoping they would try something aggressive, but I guess it doesn’t matter how much I am willing to take a risk. Learned it the hard way that they wouldn’t try anything that they were not personally familiar with. I am going to do a post or two about the hospital stay, but for now, I would like to say it was not all negative.
      I think the best thing happened to me past few weeks is getting to know amazing individuals who share and understand my struggles. I can put myself out here precisely because I know there are people like you, and I can still be a part of this world even if I’m bedridden. Thanks!

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      • Kelly says:

        Hi Marina,

        You are a true hero. I’m so glad to hear that you aren’t beating yourself up for pushing yourself, and that you had the guts to talk about your experience at the hospital where they were so unwilling to treat you like the beautiful human being that you are.

        I am nearly bedridden myself, so I worry about getting worse, but fight it as much as I possibly can. I encourage you as much as I can to try not to expect to get worse, but tell yourself (even if you don’t believe it) that you will get better. I’m not saying that being positive will cure you or anyone, but I do feel that sometimes the opposite thinking can add stress to our situation that can make us worse.

        And this will sound really stupid, but for the shingles attacks, have you tried just simple l-lysine? If your shingles was caused by the herpes simplex virus, lysine has actually been shown in studies to reduce symptoms and the re-occurance of attacks:

        http://www.ncbi.nlm.nih.gov/pubmed/3115841

        I hope this might be helpful. Thank you again for telling your story. I wish you the BEST!

        Like

      • I’ve adopted “no expectations” philosophy and it’s been serving me well! Maybe I’ll write about it sometime – by remaining truly neutral and realistic, I do not have to be disappointed or get trapped in self-pity. When the fact for me is that I’ve been getting continuously worse, this attitude is keeping me sane. I did struggle a lot in the past, and I do agree negativity will serve me no good =)
        And shingles (herpes zoster) by definition is actually caused by varicella zoster (HHV-3), not herpes simplex (HHV-1, or 2). Recurrence part probably confused you – it’s true most people would get shingles only once. But since they are in the same family, it could be worth looking into once I’m more settled in! Thanks!

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