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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9 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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  3. Karen, The Walking Allergy

    I’m very glad that there are those who are good with details- I’m linking to the boring stuff, so I don’t have to do it. Then I can talk about the day to day things I do that help me stay functional p, and it’s way more fun! When I was at mysickest, I lived in bed, curled up with my iPad. If I don’t see someone for a long time in agroup, I worry that they are too sick to be around, but but most of the time, it’s because they are doing more real life stuff. It usually a good sign!

    And, undoubtedly, BY FAR the best advice I get of what to do comes from my body. It’s remarkably reliable. Every time I over-ride my instincts, I get sicker. My GP and I were struggling to get my menstrual bleeding under control, so we tried a birth control pill, then progesterone. Had a nice confab with my bod, the message was simple, but clear. “I don’t like this stuff.” Stopped taking them all. Much better!! As u know, in addition to being a walking allergy, I’m a walking prescription pharmacy. But just because I can take something without going into ana doesn’t mean my body LIKES it, or that it works. And that changes constantly- so I am re-evaluating them all the time. My body does some spectacularly weird things, but unless it’s going to change what I DO, it’s only brain candy.

    Besides-reasearch has a fundamental flaw… it measures what is ‘normal’. But, um, we ain’t normal. I’m an outlier by definition! I worked in a field where anything other than anecdotal evidence was useless, research on typical kids just didn’t apply.

    The whole point of a blog is to share your individual story. It’s your sandbox- if someone doesn’t like what you have to say, then they can go home and play in their own yard. I’ve finally started The Walking Allergy- but it’s only a couple of posts in, so it’s a bit thin to start putting it ‘out there’.

    Be yourself, my dear, that’s what we like to hear about!

    Karen

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    1. Jak Post author

      Really pleased you’ve finally started your blog Karen – we all have to start somewhere. I never thought anyone would read mine and now look LOL! Jak x

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      1. Karen, The Walking Allergy

        I bet you’re having fun realizing that people all over the place think you are very funny, and very informative. Somebody will be reading my blog, and it could make things easier or harder for me, depending on their impression. The situation in BC has gone from bad to worse. The only people in BC who have a ‘confirmed’ diagnosis are those who were sick enough that $10K had to be spent. I’m the only one who has recovered sufficiently to be able to even contemplate taking on broader advocacy roles. Part of my fear with the blog is that I know it will be read. It will be scrutinized, and it could help or hinder my legal case significantly. On the other hand, my #1 goal is to change how people with complex disorders are treated in this Province, and maybe pay me back for a few of the things like going to see Dr Afrin (ahem!). I have a lot of people standing around me. We are all doing what we can to help each other. And I’m furious that patients are still being dismissed because MCAS is an ‘internet diagnosis'(?), mostly due to stress and mixed up pain signals (?), and that adults can’t have multiple food allergies. (WTF????). I can’t stand it, and the mantle falls to me at the moment.
        Damn my mother for giving me a conscience- it really is most inconvenient.

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        1. Jak Post author

          That’s a heavy burden to carry Karen 😦 I share the same fears re my blog in a way, in that I talk about all the activities I do and worry that the Department for Work & Pensions will somehow find and read it and take my welfare benefits away because they’ll think I am ‘well’, but at the same time I also blog about how doing these activities affects me (today I am *floored* simply because I went out for 3 hours last night to my camera club). We can only be honest about our illnesses – we are allowed to have lives and hobbies even though we are very poorly and often quite disabled.

          I do wish the Consultants who see MCAD patients would agree a diagnosis already and get it approved by the World Health Organisation – it would make such a huge difference to us in that doctors would be forced to belive us and treat us appropriately. I have no idea what the bloody hold up is but it’s unacceptable!

          Jak x

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