I am not my disease(es)

I have occasionally been accused by some people who read my blog that I don’t know my stuff.  That I don’t research enough, or read enough, or belong to enough online groups or keep up to date with the latest goings on.  And to a point they’re right.

I have a life y’see.  Outside of my diseases.  I actually like to talk to people in the ‘real world’.  I love being outdoors, watching the local wildlife through my long camera lens.  I spend time in the bath reading Photography magazines.  I waste hours tinkering in my miniscule garden.  There is nothing nicer on a warm day than walking Bertie down by the river and trying to sneak up on the Heron to capture him on film (I haven’t managed it in 3 years but I’m always hopeful 😉 ).  My guilty pleasure is watching Teen Mom on the telly and I’m currently addicted to Broadchurch.  Sometimes I simply lie in my bed and do absolutely bugger all but listen to the birds singing outside and the sound of my dog snoring contentedly beside me………. and it’s heavenly.

I don’t belong to Twitter or Instagram, Snapchat or WhatsApp and I only have 80 Facebook friends (I consider a ‘friend’ to be someone I actually know, not some random stranger I met online last week).  I’m not on any groups or forums.  I don’t have time.  I’m too busy having fun and trying to remain a fully rounded human being despite my physical and mental limitations.  I’m too engrossed smelling the early spring flowers, watching the clouds drift by in the sky and cherishing the sound of the returning Swifts and Lapwings.  In other words, belonging to the real world.

I know I’m lucky to be well enough to enjoy life outside the house, but even during the 10 years I was bedridden I didn’t spend every waking second in cyber space.  I was too busy then trying to get better – resting, meditating, soaking in epsom salt baths and juicing home-sprouted pea shoots.  And it worked (thank you God), at least to a point.

Yes there are people online much more informed than me, who are surgically connected to their computers and available 24/7 (when do these people sleep?!).  They know everything about everything yet are, amazingly, still sick, just like me.  But less happy and content I’d wager.  It can be really stressful being online, and the reason I left all the forums and groups was that some people are just argumentative, negative, rude pillocks and they used to wind me up to bursting point which wasn’t good for my health.  Personally, I would find spending hours a day reading complex research papers boring as all hell and I have no intention of wasting the little mental energy and clarity I have doing that – if and when a cause for M.E., or the gene for hEDS, or the cure for MCAD is found it’ll be splashed all over the news so I won’t have to belong to 20 different Facebook groups to hear about it.

I am more, oh so much more, than my diseases.  I don’t need to know how my genes express themselves (I just know they seem to be angry at me 😉 ), or the fact there have been 5 different studies since Christmas which claim to have found the cause of M.E. (they can’t all be right and I’d bet my life none of them are!), or how physiotherapy is the be all and end all of EDS management (“bollocks” is all I have to say to that).  So I cherry-pick the information I feel is most relevant to me and the forums which are most useful to dip into with specific questions and ignore everything else.  The balance of knowing enough about my diseases to manage them (there is no magic cure or even effective treatments) and inform medical staff about them, yet not so much that they rule my every waking moment works for me, and means that my life is lived in tandem with my illnesses, not consumed by them.

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5 thoughts on “I am not my disease(es)

  1. Lindsay

    i feel the exact same way! there are plenty of blogs that provide more information about POTS than mine. that was never the point of my blog. i started it merely to share my experience. i think we need all kinds of health blogs – some to provide factual information, some to share experiences, some to remind us that there is a life outside of illness. yours does a lovely job of all three.

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  2. LaurenM

    This was so refreshing. It’s exactly how I’m beginning to feel about my situation and all of my endless research, and my dissatisfaction with being online too much. There’s so much more to life, and about being present for myself and for others. I want to focus my daily life on all that and on finding all the joy that I can. Life really is too short for me to be wasting all of my energy wondering and worrying about all of these Heds and MCAD health things. I’ve learned enough to carry me for a while and to do plenty of good things for myself. Thank you for sharing your thoughts. It’s an important reminder for me to keep my head in the game of life. ❤

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    1. Jak Post author

      The first couple of years when you get sick it’s natural to want to know everything about your illness and to talk to others who share your situation. But I think as time goes by and you realize you’re not going to get better it becomes important to balance your time in the ‘sick’ world with time in the world that everyone else belongs to. I think I came to that conclusion in year 6 of being sick and now 22 years into illness I probably spend 20% of my time in the sick world and 80% in the regular world and that balance works for me. Jak x

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      1. d

        I agree, it’s important to understand what’s going on with your health, and given that mast cell disorders are still not well known in the medical community, that involves a lot of personal research. There is a great book called “You Don’t Look Sick!” by Joy Selak and Steven Overman about living with invisible chronic illness. It goes through the phases of getting sick, being sick and living with your illness. It really helped me get from being sick to living and making a new life. I got it from my local library, and I believe the book now has a British publisher so may be available in the UK.

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