Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Saturday, January 26, 2013

Gallery of Dead Possessions

Being newly diagnosed (within the last two years) I find that reminders of my past life are everywhere. It's difficult to open a door, or a cabinet, or a closet in my house without seeing something that reminds me of my former healthy lifestyle.  These objectsthese remidersare everywhere.  I'd imagine that other newly diagnosed patients deal with the same issues.  What are we supposed to do with this stuff?  Will we ever use any of it again?

I decided to start liquidating some of itselling it on Craig's List.  Not all of it.  Just some. I figure, not only will this help me move on in my life, but it should emancipate a nice chunk of cash that's currently locked up in useless possessions.  

So this post is a sort of tribute to some of my favorite old possessions. (Man, that sounds corny).  I'll miss you, but I have to move on.  

*Incidentally, these pictures served two purposes.  If they look like they're arranged to be appealing to a Craig's List buyer, you're right!

This is the world's greatest beer pong table. We had some good times together. 
In surfing, your board collection is called a "quiver."  This is a small-ish quiver -- serious surfers have 6-10 boards.  You want to have a board for every mood and every sea condition.  I'll probably keep the longboard in case I improve well enough to do some lazy surfing in the future.  If not, my daughter can use it as a starter board some day.  The others must go.

Ahh, the hot tub.  Sadly, they say that PWMEs should avoid chlorinated water because the chlorine absorbs through our skin and our defective detoxification mechanisms can't deal with it effectively.  We'll see.  I might still use it occasionally.
Here's a little wetsuit drying rack I built out of PVC pipe.  It will still get some use from my wife's wetsuits, but  not nearly as much.


Mrs. Calvin doesn't drink much hard alcohol, so this stuff just gathers dust. 

Dry foods.  It's mostly carbs (except the nuts).

My work bench, my baby.  I shouldn't say these tools are completely useless to me now -- I still use them sometimes, just not nearly as often.

Three wetsuits: one for Winter, one for Spring & Fall, and one for Summer.  I can't tell you how much I miss suiting up.  It's like wearing a full-body compression sock: you're heart doesn't have to work nearly as hard to circulate blood. It's pretty relaxing

Sports equipment.  I'll probably keep the golf clubs - golf sounds like a reasonable possibility in the future.  

Snowboard gear.  It kills me that I might not be able to teach my daughter how to ski or snowboard.  I had always looked forward to that. 

This is a roof rack that allows you to strap surfboards to your car. 

Nintendo Wii.  Believe it or not, most of these games will cause me to crash if I play them.  

Backpacking gear.  Drive-in camping is still doable, but backpacking and hiking is out of the question right now.

Power tools.  I feel good just looking at these things.

Never used 'em much anyway.  I won't shed any tears over this stuff.

Actually, I might use these weights again some day, but I'm sticking to Tai Chi for now

Yerba Mate' accouterments.  Yerba mate' is a type of loose leaf, high caffeine tea from the lower half of South America.   You're supposed to drink it out of these gourds, as the natural flavor of the gourds leeches into the tea.  The metal straws (called bombillas) filter the tea leaves.  Unfortunately, the high caffeine content doesn't agree with me now.  It also supposedly robs one of B vitamins, which is the last thing I need.

Yoga mat.  I can still do some light yoga, but not enough to attend classes (which is where I used this mat).

Running shoes. Look at them--they're begging me to take them out for a run.  Sorry guys.

Breathalyzer.  People love these things at parties, I'm not kidding.  Apparently, folks like to see who is the drunkest at the party.  After it left my hands at a party, it was often hard to get back. 
Oh Bev Mo.  You're like the Toy'R'Us for adults.  I miss you.

TideMaster watch. This sucker tells you what the tide is at any given moment at thousands of beaches across the world.  It's based on the beaches' latitude and the position of the moon.

And finally, here's a small sampling of the clothes that don't fit any longer due to weight loss.  Some I've had altered, others are going into storage in case I gain the weight back.  

OK, that felt good to unburden myself.  Thank you.  In the future, I hope to do a more positive post about all of the items that have become more useful to me with ME/CFS.  I seem to have shifted my focus to more creative pursuits, which comes with a whole different array of fun supplies.

29 comments:

  1. i couldn't get my comments to post via iphone or ipad, so i sent you an email.

    thanks, cris

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  2. Good post! I've never heard that about chlorine, but it does dry out my skin a lot if nothing else. I wonder if a salt water pool would still be a problem?

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    1. To be fair, I only read it once, and I can't remember where. I know of one PWME who swims for light exercise and doesn't have a problem with it.

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  3. I cried when I opened my figure skating bag. I had hidden it in the closet and hadn't opened it in two years since becoming sick.

    I think at the 1.5 year mark I started giving stuff away. Now, 3 years in, I'm starting to feel better and am wondering about the wisdom of my earlier actions. I had some very nice flower pots I gave away. I did keep most of my clothes and have put them in storage. In my case I have gained weight instead of loosing it. I'm looking forward to being more active and loosing it again.

    BTW, I just upped my equalibriant dose to 3xday. I've got way more energy but I seem to have more joint and muscle pain. Ick but very happy with the increased energy!

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    1. Baffled, I'm so glad to hear that you're improving, although I wish it didn't come with the joint pain.

      Your comments give me pause about selling some of my stuff. I don't want to regret it later. You gave me something to think about...

      Patrick

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  4. Patrick-It is amazing the emotional ties we have with "stuff" as it pertains to our hobbies. I could feel this in your commentary, and the photos. I'll admit, I got a bit choked up when I saw the surf boards/wetsuits because I know this is a passion of yours. Really an extension of you basically. Part of letting go I suppose. And, if you regain full health, you wll gladly go purchase new items I bet! I almost sold my road bike that I had just purchased about 3 months before I went down, wondering if I would ever really ride it again. My latest treatment has given me hope that I will. Maybe not competitively, but for a longer ride nonetheless. I am on day 17 of feeling a lot better. Maybe not 100%, but around 90% or so.....which of course is a very noticeable change. Curios what your doc would say about this type of treatment.....

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    1. Hi Bret,

      That's great that you're still doing well on corticosteroids. I'll have to ask my doctor about it next time I see him. Was there some kind of test your doctor did before he decided you were a candidate? Back in 2005, I had a 3 or 4 week bout with something very much like CFS - at the time my doctor called it Mono or a mono-like illness. My doctor at the time prescribed a steroid (I don't remember which one) and it helped me feel a lot better. I'm not sure if it contributed to my recovery, but it certainly made life more manageable while I recovered.

      So when I got sick again in 2011, I asked my doctors about trying steroids again. This time, the two doctors I asked (not my current doctors) said I should not take steroids. One was very adamant about it. I don't know why he was adamant that I not take steroids, and I wish I would have asked him. But now I think it's worth asking my new doctors about it -- can't argue with the results last time -- and now your results.

      I know that steroids reduce inflammation and suppress the immune system. I wonder if the answer to my question has to do with the Th1/Th2 imbalance. If the Th2 side of a typical PWME's immune system is stuck in the "on" position, filling him/her with pro-inflammatory cytokines, then the steroids probably turn off that mechanism and reduce that energy-sapping inflammation. I wonder then what it's affect would be on the Th1 side of the immune system, which is already suppressed. I'll ask Dr. Chia about that one - it will be interesting to get his take on this.

      I'm glad you kept your road bike, it sounds like you might be able to use it again in the future. Keeping my fingers crossed for you. Best of luck, Bret

      Patrick

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  5. I appreciate the thoughts Patrick. When something works, it is so hard not to get excited. I have been down that road too many times, so I am just enjoying each day. The test I had that suggested this treatment was for anti bodies, ones that attack the thyroid to be specific. Again, my thyroid tests all checked out, but these antibodies (2 of them) were both high, one being very high in my doc's words. After seeing this, my doc said that something unusual was going on with my immune system, and he would bet $ that if these levels were brought down to normal, I would feel better. There are 3 treatments for this. First, Imuran which is a pill taken to suppress the immune system. I tried this, and after 2 months discontinued because of no effect. Next was the cortocosteroid infusion, 3 times spaced a month apart. Meant to shock the immune system, much like rebooting a computer, into getting back on a normal track. A plasma exchange would be next if this does not work, but so far this infusion has made a difference. The high anti body reading I had is consistent with hashimotos encephalitus, a 1 out of 150k chance of contracting. But, those results are the tell tale sign of this dx. Since it involves the brain, corrective action is needed to avoid some permanent deficits. Yikes. Sorry to go on, but this is a concise way of how I was lead to my treatments. I am more tired today, as I jammed a lot of activity in yesterday (mostly shoveling snow here in MN). But, it is a different kind of tired! I would give you half of my improvement if I could Patrick, you seem like a great person who does not deserve all this. Then again, no one does.

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    1. Very interesting, Bret. In a way, I envy you that you've managed to hone in on a possible specific cause of your ME/CFS, which gives you something to focus your treatment on. That's great. On the other hand, I know how frustrating this all must be.

      Just by chance, a thread popped up on Phoenix Rising this week about the use of steroids for ME/CFS. There's not much useful information there yet, but it might be worth following as the thread grows. My main takeaway is that it's probably fine for short term use, but people caution against long term use. I hope it resets your immune system and you can go off of it eventually.

      http://forums.phoenixrising.me/index.php?threads/should-steroids-be-avoided.21594/

      Thanks for your kinds words, Bret.

      Patrick

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  6. I suggest keeping your most prized possessions until year 5 or 6 since that is the typical recovery time. Year 2 is the worst year for symptoms and things should start improving. At least that is what Dr. Bell claims. I haven't given anything else away and still have my skates. I've just tucked away all my old stuff so I don't see it much. My skates are back in the deep recesses of my closet so I don't see them at all. I'm very glad I never sold my sewing gear. It will probably be one of my first activities as I increase my activity levels.

    I had a similar reaction to steroids. I had to have a cortisone shot in my shoulder for an unrelated injury. My CFS symptoms reduced dramatically for the one month the steroid was in my system. Once it wore off the CFS symptoms returned which led me to believe that many of our symptoms are directly related to inflammation of the brain and/or CNS. My doc won't prescribe steroids long term although they are used long term for other inflammatory conditions (my Mum is currently on them for blood vessel inflammation). There are hazards to long term use, immune suppression, water retention/bloating, and weight gain. The body also gets used to them and suppresses its own production of steroids leading to increased dosing to maintain blood levels. I did get my CFS doc to put me on a low dose of hydrocortisone which helped at first but caused weight gain and swelling. After about a year it didn't do much anymore and I weaned off it.

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  7. Good lord I get distracted easily. I came over to your site to give you this link you might be interested in:
    http://www.genengnews.com/gen-news-highlights/gaba-therapy-prevents-type-1-diabetes-and-reverses-established-disease-in-mouse-models/81245363/

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    1. Thanks Baffled. You always come through with the good information!

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  8. This post actually kind of broke my heart. We used to back-pack, hike, and camp, all the time and couldn't wait for our boys to get old enough to take with us, now we are trying to accept that it just won't happen. (Although, we really don't accept this, we always believe that he will get better).
    My husband plays guitar and since this all started he has gotten a band together and they meet up once a week for practice and play at a bowling alley about once a month. Having his mind work on that project is such a help to him, I really belive you have to try to do some of the things you love or find something you can do that really makes you feel excited. Of course, we work from home, so he can rest up on the days he plays, I guess it would be different if he had to go to work all day!
    Last March, after already dealing with CFS, we found out that Greg had prostate cancer. He had a prostatectomy and is now clear (psa results yesterday!), but I think it actually helped us to accept limitations and just be happy that he has some good days to spend with the kids.
    I have read that Th1/th2 imbalance can allow cancer to grow, I wonder if that is why he ended up with cancer at a young age with no family history.

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    1. Hi Linda,

      Thanks for your three recent comments...I'm going to respond to the three of them in this post. First of all, I'm so sorry to hear about Greg's battle with prostate cancer. That must have been incredibly stressful to deal with WHILE having ME/CFS! Sheesh. But that's great about the recent PSA results. I too worry about the the Th1/Th2 imbalance and the decreased natural killer cell function that supposedly allows cancer to proliferate. But I try to put that out of my head because we already have enough to worry about, right? And worrying isn't going to do any good.

      I'm excited that you got a portable sauna. I mean, I'm no doctor, but I really feel like it has helped me a lot. I always feel better when I come out. But I've talked to others who haven't had any luck with it, so I guess it's individual. Let me know how it goes.

      I don't know what to tell you about the inosine. The only reason I can think of NOT to start it at the same time as Equillibrant is so that if it works, or it causes a crash, you'll be able to isolate the cause. I guess if I were you I'd ramp up to the full dosage of Equil first and then try the inosine. I think that's the way Dr. Chia usually administers them.

      I'm glad you guys found my blog. It's good to hear your perspectives.

      Patrick

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    2. You're right, I'll hold off on the inosine for now. He's up to 4 Equillibrant starting yesterday and also started the Thymic Protein -- he felt pretty bad all day yesterday, but seems to be doing pretty good today.

      The sauna should arrive today, I'll let you know how it goes.
      I am impressed by you and all of the people commenting on this blog who are dealing with this sickness and yet do all this research. It's exhausting and I am perfectly healthy! Greg gets dizzy and overstimulated if he is on the computer too much.

      I noticed a comment where a guy is asking about testosterone, and I have a thought on that. Is there any correlation between prostate cancer and cfs -- I have never seen anything saying there is (since the XMRV thing was ruled out), but I wonder about it since Greg had it. I think since mostly women have cfs (or admit to it), the correlation may be harder to pin down. If a person has prostate cancer cells, the testosterone will help them grow. So make sure you get checked before starting. When I was researching prostate cancer, the #1 mistake men made was unknowingly starting on testosterone and then realizing they had cancer.

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    3. Linda, that's an interesting question about ME?CFS and testosterone. The way my doctor described it, he made it sound like after you get ME/CFS, your hormones get out of wack. It's one of the symptoms. So he made it sound like my low T is a symptom of, not a cause of the ME/CFS. But that would be interesting to see more research on that.

      And thanks for the advice about cancer!

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  9. Oh, Patrick. My sympathies. I know this all so well - I have the possessions of that lost person still too. I've been sick since 2004, almost entirely bedridden since 2007, and I just, just got rid of my treadmill less than a month ago. It was a really nice one, only a couple years old when I got sick, and though I was instantly unable to exercise, it stayed for many years past the point where I realized I was never going to be well again. When I heard the truck come to take it last month, I admit that I teared up.

    My bike is still in the garage. My guitars are still in their cases. My scads of beautiful clothes I have no job to wear for and I can't wear because of pressure issues are still in the closets getting progressively more out of fashion. It all sucks.

    One note: Don't get rid of that hot tub yet. I'm a Cheney patient, and one of the things he suggests is that patients use a whirlpool tub to help lymphatic circulation. Though if you can do Tai Chi and yoga to some degree, you're probably pretty able to move it by regular means.

    - Jocelyn

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    1. Hey Jocelyn, nice to hear from you. I was just thinking the other day that I hadn't stopped by your blog in a while and that I need to see how you are doing.

      Your story about the treadmill got to me. I don't know what's harder, the loss of the possession, or the fact that getting rid of it is a sort of resignation or acceptance of our state.

      I won't get rid of the hot tub just yet. ;) My toddler daughter likes to play in it -- to her tiny frame it might as well be a swimming pool!

      Take care. I hope you are hanging in there.

      Patrick

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  10. Patrick, I almost got rid of my music and stereo equipment because of my horrible hyperacuity three years into the illness. I have been on Valcyte for four months and I have begun to be able to enjoy music again; my cognitive stuff has improved x a million on Valcyte (unfortunately not my physical resiliency, but I'll take getting some cognitive function back!). I am so glad I hung onto my high end stereo. Rediscovering music after living in painful silence has been such a pleasure with beloved stereo. You don't know whether or how you'll improve or how at this early stage. I hope this gives you some hope that it is one step forward (before the two steps back, of course) some of the time.

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    1. sorry for all the typos and garbled syntax. I'm not the poster child for Valcyte and cognitive function this morning!

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    2. Thanks Heather, A lot of the comments here, including yours, have made me rethink my list of what I'm selling and what I'm not. Honestly, some of this stuff had to go anyway. No respectable 36 y/o man (which a child) should own a beer pong table. lol.

      Glad to hear the Valcyte is working for you. That's fantastic!

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  11. Thank you for this moving post. I think this resonates with a lot of us. I've got piles of professional journals that I never even crack open - but I can't seem to throw them away OR stop renewing the subscriptions. It's just too heartbreaking to even think about the fact that I trained for a new career in midlife and then became completely unable to practice it - let alone do any job. Ditto the drawers full of drafting, drawing and model-making supplies, the drafting table itself, the sketchbooks, my digital SLR, etc. etc.

    They say that educating yourself is the best investment you can make because it will never lose its value. I think I've found the loophole in that argument.

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    1. Quoted for truth: "They say that educating yourself is the best investment you can make because it will never lose its value. I think I've found the loophole in that argument."

      That made me crack up.

      Enjoyed reading your comment, and speculating on what your intended career is. Sounds like architect, but could be a many other possiblities, like engineer, artist, interior design, etc. Did I get it right?

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    2. Ugh. Stupid Blogger program lost my original reply. Anyway, the gist of it was, your last line is hilarious. I cracked up.

      And I enjoyed speculating on what your career is/was based on your comments. I guessed architect, but also considered engineer, artiest, interior design, and some others. Did I guess right?

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  12. Hey Patrick! I was just thinking that I hadn't visited your blog in far too long, and then Jocelyn shared it to facebook, and reminded me. This is such a good post, if heartbreaking, but something we all remember.
    My 2 cents - keep the tools. Being creative is essential to maintaining your sanity - just being able to look at something, however small, or however long it took you to make it, and know that you CAN still contribute physically to the world is a huge emotional boost. I make beads with a dremel, very slowly, a few minutes a day, but when I'm done, it feels so good!

    Also, chlorine is toxic to everyone, and especially to us. BUT, you can get either whole house filters or faucet filters to remove it. Showering with chlorinated water is one of the worst things you can do - the chlorine becomes airborne and you breathe it in as well as absorb thru the skin. There are many shower filters out there.

    And, you might want to keep the snorkling gear. It's a very low energy way to be in the ocean you love. Think about a taking a cruise in warm Carribean waters and snorkling off an island in turquoise seas... I was able to do that until the last 7 years or so. Which is to say, for 10 years I still could do it.

    Best wishes,
    Ash

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    1. You know what Ash, I was thinking that same thing! It's been too long, and I have been meaning to contact you lately because I've been reading more about earthing and I must say, it is quite an intriguing concept. I seem to recall that you know something about it. I wanted to ask you if you feel it really helps or not.

      Thanks for the info about Chlorine. There are so many puzzle pieces to fit into place with this disease, aren't there?

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  13. Lots of hotel pools use salt now instead of chlorine. Would that work in your hot tub?

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