Down the rabbit hole

I’m sure there are people who read my blog that think I’m a bit naive.  That I don’t really know what I’m talking about or that my knowledge of my illnesses is a bit simplistic.  They’re probably right.

For the first 6 years after I was diagnosed with M.E. back in 1994 I was like a woman possessed.  I spent every waking moment researching the disease.  I followed the ridiculously heated debate over the name.  I tried every wacky treatment from every obscure internet site I could find.   I followed arguments on forums between patients that, to be frank, became stressful and deeply upsetting.   It was exhausting both physically, mentally and emotionally.

After 6 years I had a Eureka moment: there is no cure for M.E.  If there were none of us would be sick.  And I also realized something else – if there is no cure then I have to start living with my disease, not wasting all my energy pointlessly being in cyberspace.  I had a good think about what I needed and decided that it was company, being as though I was bedridden and lived alone.  I also needed purpose.  So I stayed on just one support group online and also volunteered my time to 2 ME organisations.  I then subscribed to just one charity and received their magazine so that they could filter all the information for me and I could read the highlights.  I quit everything else, letting people less sick than me battle for recognition and research.

In the past 5 years I’ve had to delve into both the Ehlers-Danlos world and the Mast Cell Disease world and could easily have found myself once again spending my entire life immersed in sickness – I refuse to go there.  When it boils down to it, there are less than a dozen really useful papers on EDS and MCAD and once you’ve read them you kind’ve know all you need to.  I will let the charities live and breathe EDS and filter their knowledge to me because I’m too poorly to do more, and I will have to let people with MCAD who are less ill than me fight for its recognition and treatment.

Several good things have come out of this step back from my sick world.  The first is that I actually get to have a life outside my diseases, which has been vital for my mental and emotional health.  It also means I have the energy to follow other topics and have something other than illness to discuss with my nearest and dearest.  I also feel I can be slightly more objective when discussing my diseases – when you’re investing all your time and emotional resources into any one thing it can be difficult to see the wood for the trees.  I also hope I write my blog posts in as plain English as I can – “inheritable disease of the connective tissue” means absolutely nothing to most people; “I was born with faulty collagen” is slightly easier to get your head round.  I do get people who comment on my blog that I haven’t quite used the correct terminology and I feel like saying “yes, that’s the whole bloody point!” because we don’t all have a degree in biology and find all the medical jargon confusing.

It’s so easy to fall down the rabbit hole and find yourself in a sick world where nothing is normal.  To become obsessed with finding a cure, even though you know in your heart that none currently exists.  To expend every precious morsel of energy defending your disease to some ignorant internet troll then your evening sick with exhaustion.  To become self-absorbed and, frankly, a bit boring to those around you.  I’m aware I do all of these things sometimes and need to rein myself in.

It’s a good thing there are people who are obsessed with my diseases because otherwise recognition and research would never be achieved, but I’m too sick to be one of them.  And that’s OK.

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13 thoughts on “Down the rabbit hole

  1. Teri

    Very good post, Jak! I ‘m crashing now so I’ll keep it short. I went through the same processes. My problem, is that I’m at peace with there not being a cure, but my mom can’t deal with doing nothing. She currently thinks I need testing for a thyroid problem \-:

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    1. Jak Post author

      Hope you feel a little beter today Teri. The whole family dynamic is tough when you’re ill. I have the opposite problem – my parents just put their fingers in their ears and pretend I’m fine. Wish there were an easy solution x

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  2. Hypermobility Syndrome India/Viv

    I understand what you have written so well! I feel I am on the outside of the normal society of healthy people, especially presently living in country where health consciousness is very high and sports of all sorts are people’s favorite leisure activity. But browsing online and feeling overwhelmed by all the on goings I also felt I am also on the fringes in the society of the chronically ill. The main thing that brought me to blogging was my daughter, and the hope that she will have a diagnosis in time and a better future if the doctors agree that this disease exists. I do not know if anything counts at all. I keep a very tight limit on how much time I give to this, and I do not feel guilty or the need to be sorry for lack of my presence online. I do what suits me and my health the best, and the rest can go to hell. Be it online commitments or social plans. I am past the stage of caring.

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    1. Jak Post author

      Great attitude to have Viv. You’re the only one living your life and have to do what’s right for you. It’s hard sometimes not to say “yes” when you should be saying “no” and it’s easy to get sucked into life online but all these things come at a price and if you can recognize that you do well.

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  3. H

    Thank you, Jak. I am sorry you have these conditions as part of your life – But, I do so appreciate you sharing today’s post with us. I needed to read this as I am in the jungle of ‘we don’t know what’ going on with your health’ … and it’s too easy to keep trying to find that magic bullet and in the process become too focused, weary and out of touch with those around us.
    Thanks so much.

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    1. Jak Post author

      When you’re still at the stage of not having a proper diagnosis it’s incredibly hard not to become obsessed. In fact, I think you do need to be obsessed to some degree until you find out what your actual disease is and start treatment. It’s only then you can begin your new normal and to live a life which includes, but isn’t dominated, by your health. Good luck x

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  4. Michelle Dellene @ The Empty Nest Housewife

    Hi there Jak. I just found your blog and I’m glad I did, because I’m in the process of being diagnosed with MCAD and it’s only been a week for me but it’s exactly like falling down a rabbit hole. I agree that there is only so much to learn with the limited amount of information out there and I feel like I’ve read it all twice already! Now I just hope I can find doctors nearby that have read as much as I have…

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    1. Jak Post author

      Hi Michelle

      Pleased you’re finding my blog helpful, though sorry you’ve found yourself in the MCAD world. Good luck with finding a knowledgeable doctor – we simply don’t have them here in the UK so are just left to manage it all ourselves.

      Jak x

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  5. Elizabeth Milo

    YYYEEEESSSSS!!! I’m at the 4-year mark of obsessive researching and I’m trying so hard to rein it in for exactly this reason. I have at least 3 doctor/healthcare practitioner appointments each and every week and recently told my husband if I could replace them with different, healthier alternatives, I would. “You mean you go to them just to get out of the house?” he asked. Yes! Duh! I mean, of course I’m always hoping they’ll help (physical therapy etc.), but they became my escape because they allow me to get out of the house and talk to people. You give such sage advice. 😘

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    1. Jak Post author

      A comment on the ME Association’s facebook page sparked this blog post. Someone asked “has anyone tried l-glutamine, was it useful?” and I remember thinking “yes, I tried that about 18 years ago and no it doesn’t help” but they don’t want to hear that. They want to hear someone say “I tried it and it helped my muscle pain a little”. Eventually when they’re skint and disillusioned and still ill they’ll realize nothing helps ME, but until then it’s a path we all have to tread. I’m just happy I’m past that stage and can use my energy on taking Bertie out and my photography, ie something I enjoy – I barely look at anything medical anymore! I even stopped subscribing to the Ehlers-Danlos charity cos there’s no cure for EDS or particularly helpful treatment and I know enough to manage my symptoms xx

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      1. Elizabeth Milo

        Interestingly, I got out of the ME groups pretty quickly. They sucked me down fast. I don’t really look at MCAD groups anymore and I haven’t even acknowledged I have EDS yet, but I have to consciously extricate myself from online health discussions (for example, I recently got sucked into milk research and magnesium research… constantly falling down rabbit holes).

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        1. Jak Post author

          There’s obviously no hope for you, you are a lost cause LOL 😉 I find myself doing that with Politics. I read something one of my friends has shared on FB, get all het up and ranty and have to consciously tell myself to step awayyyy from the keyboard otherwise I’m still there 2 hours later, my contribution has done nothing to change the situation and I’m dead with exhaustion 😉 Rabbit holes everywhere!

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