Oops! I Forgot I Had a Blog.

imageThat is my favorite fake excuse for abandoning you that I’ve been able to come up with since I last posted here two years ago. The truth, of course, is that much more prosaic and usual reason why you stop hearing from an ME/CFS blogger – I just got too sick to write.

I had a terrible crash in summer 2014. I got a UTI, which would not respond to d-mannose, and by the time I got antibiotics – that process having been held up by my doctors office insisting on doing a culture (which turned up nothing useful) – it was worse than it might have been it it had been intercepted earlier. Then the serious trouble began: the antibiotics destroyed something in my intestinal flora that was allowing me to sleep. Suddenly, the sleep cocktail I’d been taking for years was completely ineffective, and I fell to zero to three hours of sleep per night. This started in late July and continued until Halloween, when I discovered purely by accident that shifting the dosing of my vasoactive intestinal peptide from orally to nasally set my sleep back on track.

But by that point I had gone three months with almost no sleep, losing an enormous amount of ground. I could no longer walk from room to room or to the bathroom, could no longer get to the kitchen to get a meal, could no longer stand for even as much is the very short amount of time I’d been able to, and could barely sit up.

Chimp begin to have to transfer me from room to room in my wheelchair, and my bathing had to be converted from a rather expedient affair to a very hurried and brief scrubdown, so that I could get back to lying down. I was again on the cusp of losing being able to bathe in the tub. Because of the extended stress, I was so weak and things were were looking so bleak by the end of October that I had asked Chimp to speak to the friends I wanted to have read and sing at my memorial service.

So I was once again marooned on my bed, or on the couch in the dayroom, able to do little more than lie there. The lost ground worsened everything, as crashes do – light and sound sensitivity, ability to converse, pressure sensitivity – and along with it came a new symptom: electronics sensitivity.

I will confess, with some definite shame, that I thought electronic sensitivity sounded sort of made up before it happened to me. I know; someone with an invisible, misunderstood, and mistakenly-denigrated illness should be more open-minded. I had experienced electronics sensitivity previously myself, even – when I bought my first cell phone, I quickly discovered I experienced a localized burning sensation if I tried to keep it on my person, and during an MRI when I was newly ill, I was able to feel what is called “tissue heating” and thus able to track the progress of the beam around my head.

Before the 2014 crash, I had begun to become intolerant of my external hard drive and anything plugged into my computer’s USB ports – I would feel a numbing, tingling buzzing sensation in the parts of my body nearest the offending device. As the crash progressed, the intolerance expanded to my laptop itself; using it produce the same numb, buzzy feeling, and when that feeling is applied to my head by a device being too near it, it makes my brain feel like scrambled eggs. Hoping a smaller device might be better, we accepted a used iPhone we were offered. That proved little better, and my ability to access the Internet dwindled to a few moments a day. (We have tried EMF-blocking cases, which as far as I can tell do nothing.) I’ve also developed problems with lots of other powered items – lights, the dehumidifier, the washer and dryer, etc.

On October 31st, 2014, my sleep started coming back together because of the VIP, and since then, I have been trying to regain the ground I’ve lost. In the midst of this, in February 2015, we had to have our house remediated for mold. We don’t believe that there was a mold problem when we moved in – that belief is partially founded on how much I improved from when I came here in 2009 up to the 2014 crash. The basement had been recently finished when we moved in, with insufficient care taken to isolate the wallboard from the foundation (which of course we had no way of knowing from looking at it), and over time the drywall suffered. We had to clear out for a week for the demolition and remediation to be done. In the process we had all the carpet torn out as well.

By the time the remediation was happening, I had improved enough that I was able to read a book a few minutes a day. For many years, my primary entertainment was reading electronically all day long – the web or books on the web. Being unable to use electronics, I had to return to lower-tech means of filling my time. I set myself the goal of reading the entire Bible; I’d never done so and I wasn’t convinced at the time that I was going to be around long enough to have a lot more chances to do so. So very slowly – in the few minutes a day I could concentrate and support part of the book – I read the entire Bible – twice – including the extensive study notes in the version I acquired. By the time I finished it, I had started to be able to concentrate longer and support a lightweight book. I went on to other books, setting myself a goal of reading the 80 books I had not read on the Goodreads list of the top 100 books of the 19th century; I read a total of 100 books in 2015.

But reading – input – was one thing; output was quite another, outside of my ability. All of what came along with the crash meant I was just not well enough to write for the blog. I had to save all of my energy to support my day-to-day function, and lacked the energy to sustain my ability to concentrate and organize my thoughts enough to compose. Plus, I couldn’t type, lacking the electronics tolerance and the energy to do so. (I’m still not typing; this has been composed partially on paper and partially by dictating it into my phone.)

Two years later, I have mostly but not entirely regained the lost ground. I can sit upright for 20 minutes if I push it, and I can get something from the kitchen from the dayroom if I need to, but I’m not up to preparing my own meals or walking out into the yard as I used to be a few years ago. I hope those things will come in time.

As for what has helped me recover from this disaster, I’ve been taking vasoactive intestinal peptide and BodyBio phosphatidylcholine for two years, more or less, and I believe that those items have been crucial to my recovery. I also gave up my vegetarianism after decades and now eat some chicken and use fish oil. Both seem to have helped.

These last two years have been strange, time-wise. The recovery has taken so long, but it seems like the crash just happened a minute ago. When things were falling apart due to the UTI, I thought they might come back together in a couple weeks, but I really underestimated how much damage could be done as fast as it happened.

Let’s end where we begin: Am I going to come back to the blog? I suppose in order to do so I need to feel like I have something to say, and part of me feels like I have already said everything useful I have to say about being sick. It’s different than the recipe blog or the personal blog I used to keep in that way. I do have some thoughts about not writing, and perhaps, ironically, I need to write those down as well.

I deeply appreciate all of you who have sent me messages and stuck with me on the blog’s Facebook page. Thanks for not writing me off then; likewise, don’t write my blog off now – not just yet.

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18 Responses to Oops! I Forgot I Had a Blog.

  1. Sharon says:

    Everything you write breaks my heart, fills my heart and increases my love and admiration for you.

  2. Stephanie says:

    Considering we’ve never met, it’s a bit surprising how profoundly happy it made me to see your notice in my in-box this morning. I’ve thought of you and wondered how you were over the last couple of years. It’s astonishing that one can lose two years to something so simple, but I know nothing is simple with this disease.

    Whether or not you continue writing, please know how much it has meant that you’ve shared your experience. When I was at the worst of my relapse I felt so much less alone.

  3. Liz Hart says:

    It is good to see you back online. What a horrid time you’ve had. As long as you write, we’ll be here reading. 🙂 Feel free to tell us about the books you read. Gentle hugs (((Jocelyn)))

  4. S F Moore says:

    So good to hear from you again! What a trying time you’ve been through. It is good to see you getting some of your health back. From one fellow Cheney patient to another…. I’m sending hugs and good wishes from Texas!

  5. Whenever you have the energy, please say where you bought the nasal vasoactive intestinal peptide.

    If that’s not available, I’ed be happy to try the oral vasoactive intestinal peptide too. I can’t find either on the net.

    Is the BodyBio phosphatidylcholine you tried this?:
    http://www.bodybio.com/storecategory128.aspx

    I find red meat gives me more energy than fish or chicken, but that is just me. You have probably already tried that.

    I feel uncomfortable bombarding you with questions while you are feeling like this so please take as long as you need to answer. It’s OK if you can’t answer at all .
    I just got excited about the nasal vasoactive intestinal peptide helping your sleep.

    • Jocelyn says:

      Yes, that is the phosphatidylcholine that he recommends. The VIP comes from Hopkinton pharmacy in Massachusetts. It is by prescription, but any doctor in an approved state can write it. There is a VIP test your doctor can order to check your level – Cheney has found his patients to have basically none. http://ltd.aruplab.com/Tests/Pub/0099435

  6. Inge Heinrich says:

    Welcome back Jocelyn, it took a long time and I admire you how you dealt with such a long relapse. You helped me enormously when you detailed the way you coped with extreme insomnia and I will be grateful for this as long as I live. I wish I could get hold of VIP but could find no source in Europe, but all your other remedies gave me ideas to cobble a regime together which sort of helps my also severe insomnia.
    I hope for us both that we never encounter such long periods without sleep again.
    Wishing you to progress and find at least some small joy in being passive for a while longer until your concentration improves.
    With respect to electronics sensitivity I don’t know the answer – may be some better shielding will be available sooner or later because you are not alone with this either.
    Wishing you the very best possible,
    Inge

    • Jocelyn says:

      Inge, I’m so glad that helped you somewhat. You don’t need me to tell you that insomnia is the worst. Thanks for the kind words. I hope the VIP will become available where you are as well.

  7. Nancy Hulen says:

    I know you probably have had many people suggesting what protocols may help you to feel better. I have never written to anyone like this, but just felt I must try to help people with CFS if I can. I’m an attorney & haven’t been able to work for 30 years. Now I’m too old. I tried everything including antivirals, you name it, was diagnosed with lupus, possible lyme, Addisons disease, Hashimotos, c. Pneumonia, CFS, fibro, arthritis, elichiosis, babesia, epstein barr and other viruses. As you probably know healthrising.org has a “people who have improved” section. This is where I went for ideas. I feel the best I have been in 25 years and this is what helped. (There may be times when you feel this is not working and you may actually feel worse, but continue with it. It won’t hurt you.) Go on a paleo diet and start taking 4 different extremely potent probiotics and keep changing them every few months. Take the most potent ones with billions of organisms even VSL#3. I’ve been on the paleo diet for 4 years and started the probiotics several months ago & have gradually and consistently improved. The paleo diet even improved my cholesterol levels, which had been extremely high. If you choose to do this, please let me know how you are doing. If it helps and it will, pass it on to others. Thanks.

    • Jocelyn says:

      Nancy, I’m glad you found something that worked for you. Unfortunately, there’s nothing I’ve found in the supplement world that makes me as terribly sick as probiotics do. It’s happened multiple times the same way, so I’m sure it isn’t coincidental.

  8. Peggy Stahl says:

    So glad I just checked to see if you had posted once again. I’ve been thinking of you and hoping that you weren’t writing because you were too busy living life. Did not want to think that you were in a crash, but glad now to know that maybe you’ll be writing once again. Once you have been better, I know it is so hard to be at the bottom again.
    Our daughter is now 37 and hasn’t improved a great deal over the past years, but last year she got married !! We all had given up completely that she would even be able to leave her house enough to develop a relationship. But she reconnected with a high school friend through the computer and over the course of 3 years developed a relationship. Didn’t go out really for one year–he would bring food and stay as short or long a while as she could tolerate. Second year she met his two children. Third year she was able to go out a bit as a family and all decided they wanted to live together. The lowest key wedding ever was held and then a couple days later a very small reception at home with family and best friends. No honeymoon. The kids (8 and 13) are there only part-time so that’s about all she can tolerate–and they are most cooperative when they know she is resting. It’s a “we’ll figure it out as we go” situation.
    So glad you have Chimp and a mom who obviously loves you dearly. Hold them close when you are able and let yourself be held through the toughest times. So glad you have been able to read. The worst is not being able to sleep and the second worst is not being able to read, I think. Third worst is not being able to laugh. Our daughter’s step kids delight in making her laugh and that’s healing for sure. Thanks for the tips on VIP and the phosphatidylcholine. The best to you!

  9. Bunny says:

    Aw, sorry for the latest downfall. It’s a bitch, isn’t it? Mold was the catalyst for me becoming severely ill although I had mild CFS/ME and fibro a good decade before just had no idea. Sooooo glad you got that taken care of and are doing better now. I was a vegetarian before I got sick and a healthy, organic eating one at that but like you, when I got very sick, found that meat, flesh protein was absolutely necessary. High amount of fat helped me too or was needed back then too. Honestly, I could barely eat much when I was at my worst, so many things made me worse but luckily after years, I can eat more now and don’t need as much fleshy protein but still need it every day. Of course everyone is different as to what foods are really good for them.

    I find it interesting that most everything we are taught about “health” tends to turn opposite with this illness for example: things like, food, exercise, thinking “positive”, pushing yourself and most everything that we did in the past makes us worse. I often call it the “opposite disease” because everything that is good for someone healthy can cause just horrific problems for us. Sometimes, you just have to laugh at the bleakness of it all. I wish I was a writer, cus some pretty great dark comedy is inside me at all times. lol Glad you are doing better, may you slowly get stronger and stronger again.

    Thanks for sharing. 🙂

    • Jocelyn says:

      Oh, Bunny – “opposite disease” – I love that! I am having a little more luck with food now, a couple years out from the remediation. Still pretty cautious on that front, but am finding I can eat some things I have been missing, at least in small amounts. Thanks for the well-wishes – much appreciated.

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