The green eyed monster

An article was written in the Telegraph this week about an M.E. sufferer who has recovered enough to go on short holidays, including visiting friends, after being housebound for 14 years.  Like me they became ill in the mid 1990s after vaccinations for travel abroad and, like me, they are still ill over two decades later.  Also like me, they were severely affected for ten years before making a degree of improvement (though, like me, they still have ME).

The post was shared on social media and immediately negative comments appeared from other ME sufferers.  They found the article upsetting.  They questioned this person’s diagnosis and how they had managed to maintain friendships if they were bedridden/housebound.  The snippy comment that “well, lucky them to have got to travel before they got sick”, even though this poor person became ill at the age of 21 and is now 45!

The comments stunk of the green eyed monster which I understand, I really do.  When I was severely affected and would read about ME sufferers who were less ill than me and still able to enjoy at least a semblance of a normal life it used bring me to tears.  Why the hell should they get to go on holiday or out for lunch or to the cinema when I couldn’t even sit upright without passing out?  Why had the people in their life stuck by them when the people in mine had left in droves?  They were even getting married despite being bedridden – where on earth were they meeting these men when the only person I ever saw were the post man and my cleaner and the men I came across online lived hundreds of miles away if not on another continent?  It was so UNFAIR goddammit!  But I never resented them.  Never questioned their diagnosis or their suffering.

Now the shoe is on the other foot and I am the one enjoying some semblance of a normal life.  But I worked really hard to get where I am today – I don’t think anyone appreciates quite how hard, or how stressful, soul destroying, exhausting, depressing and lonely the road has been.  I have no clue why I’ve managed to make some degree of improvement while other people who became ill at the same time as me, or who are as severe as I was, have not.  I know I’m lucky but I’m also aware that some sufferers resent my improvement.

My improvement was gradual – it took years, it didn’t happen overnight – but when I had finally recovered enough to start driving again (automatic car), or to own a dog (walked by other people who I have to pay), or to start cooking meals again (albeit not every day) questions started to be asked by other sufferers about whether I even had ME at all.  This got worse when I received my Ehlers-Danlos and MCAD diagnoses. “See!  I told you she never had ME in the first place, that’s why she’s got better and I haven’t”.  Deeply hurtful, especially as ME still dominates my life and means I spend 14 hours of every day in my bed, alone and feeling like I’ve been run over by a bus (I’ve woken this morning with my throat so sore I can barely swallow).

It’s bad enough that for the duration of my illness my experience has been questioned by all in sundry: my work, the benefits agency, joe public, the media, the neighbours, even some sections of my family………but to have to justify myself to other ME sufferers makes me furious.  That my suffering is questioned by them appalls and saddens me.

I refuse to apologise for seeing some improvement in my disease.  Y’know the disease from which I nearly died.  The disease which has robbed me of my entire adult life.  My career, my partner, holidays, finances, hobbies and friends.

Am I jealous when other people with ME find love, go on holiday, can eat whatever they like and take copious amounts of painkillers?  Yes, absolutely.  I’m only human.  But am I resentful?  No.  Not a jot.  I can wish it were me but still feel happy for the other person.  Still feel hopeful that one day, maybe, it could be me!  It’s hope which keeps me going, because if I can nearly die from this disease and recover enough to become a certified photographer (albeit one whose photos are taken within a 1 mile radius of her home, and usually in her spare bedroom while she wears her pyjamas) anything is possible.

 

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9 thoughts on “The green eyed monster

  1. Glo

    It’s the perseverance that helps. You’ve learned pacing and tons of other coping mechanisms. You keep picking yourself up again and getting on with things. I wonder if the people who are so bitter towards others are holding themselves back by not learning pacing etc? Disclaimer here, I do not have m. e. But I have watched my daughter who has fibromyalgia. When it first started she was flat out unable to do anything and depressed which who can blame her. Over the years she has learned to cope. She has do nothing days ( sometimes not by choice ) and has learned to do somethings differently. She develops severe elbow pain and has to get shots in her elbow joints which insurance will only pay for so many times a year. She keeps pushing along through all the pain and is always helping others. I have mcad and she is an inspiration to me. I think when we do for others instead of resenting it helps our whole outlook on things. Even tiny things can make you feel better. Yes I know these are all physical and real illnesses but they also have mental repercussions. Maybe taking our minds off of ourselves helps just a tiny bit? With all you do for others and as exhausted as this makes you doesn’t it make you feel better in a small way? Purpose in life no matter how small can make a big difference for anybody. Everyone is jealous or bitter sometimes but if you don’t let it go it can harm you. Big connection between the mind and body. Sorry if this is rambling. Very early morning and getting over a bad reaction from something. Grateful for my daughter and you for being such good examples for me. 😺

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    1. Jak Post author

      I totally agree Glo that having a goal and purpose in life when you’re ill is so important. It can be hard to find when you’re very poorly which is why I’ve always had pets – no matter how sick I’ve ever been I had to get out of bed each day to feed and care for my pet, giving me a reason to carry on despite everything x

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  2. Lindsay

    i find it especially upsetting when other chronic illness sufferers bash others, for any reason. like you said, it’s frustrating enough to have to justify our illness to friends, family, the public, etc., we shouldn’t have to explain/justify anything to anyone going through the same thing. i hate how sometimes chronic illness becomes a competition online. we’re all sick, we’ve all been through some shit, and even those of us that have seem improvement will go through more shit in the future.

    in the beginning when i was really sick, i knew a woman with POTS that could run marathons. i was jealous of her, not because i wanted to run marathons, but because i wanted to function on that higher level. but i was so happy for her, too. she gave me hope. how wonderful that her symptoms improved enough to let her go out and live her life – isn’t that the goal??!

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    1. Jak Post author

      I agree Linds, the whole competition thing is outrageous. To be bashed for improving, when as you say that’s the goal all of us strive for, is so out of order! x

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  3. Teri

    From my understanding there are like 6 levels of ME, ranging from being able to work part time to being bedridden. So isn’t the great degree of difference in functionality normal, & subject to change?
    My illness keeps getting worse, so my perspective is “I’m too busy with my own grass (trying to keep from becoming totally bedridden) to notice if yours is greener.” And if it is more power to ya! I do understand having those feelings, though. Especially if you have little to no support system.
    I owe you a ton of thanks, Jak. Finding your blog, and learning about histamine intolerance is probably what’s keeping me from being completely bedridden with a constant migraine. You have made a big impact in this girl’s life, and I’m sure many others as well ❤ 🙂

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  4. d

    I don’t have ME, but I started following your blog for your experiences with histamine intolerance and MCAD. What I took away from it, and continue to take away from it, is that there can be a life made when chronic illness is part of the picture. Your blog sustained me for a long time, and made me feel I was not alone when I felt very alone indeed. I have been able to make or re-make some semblance of a life (different than what I imagined but still fulfilling) and I credit the notion that it could happen for me to you and your writing. You gave me hope. The other take away for me was patience – my body will do what it wants and I need to listen, be patient and try my best to make this partnership work. Know when to push and know when to back off and rest. It’s a constant push-pull and readjustment of expectations.

    Thanks Jak,
    d

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  5. Pamallergy

    Excellent post. Each person’s experience of ME and how they respond to the challenges of this condition will be different. It is emotionally hard to deal with as well as physically hard to deal with. I was diagnosed with it at 28 but I was in the bracket that could work and collapse afterwards. Like the traveller – Juliette – in the Telegraph I react to a lot of chemicals and foods, and I’m currently waiting to see a MCAS specialist. I’ve always been pleased for anyone who finds a form of relief from whatever medical condition they have, so I was happy for Juliette and she shares some good tips.

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