Thriving not surviving

There was a question posed on the ME Association’s Facebook page this week from someone asking how you get through the days with chronic illness and remain sane.  Good question!  There is no one size fits all answer, however, because we’re all different and motivated and made joyful by different things.  Just like any situation in life you have to find a solution that’s right for you and it may not be the solution that someone else would choose.

Six years into having ME I realized I was going to be ill for the rest of my life (I had no idea at the time I also had Ehlers-Danlos and mast cell disease).  I had a lightbulb moment and it was this: I had to stop fighting my situation.  The disease and I were now one entity and we had to learn to live together.  I finally relaxed into the illness and adapted my life around it.  I started to live again, not just exist.  I bought a computer, got in touch with other sufferers and took on some voluntary work from my bed.

Now, fourteen years later, I am happier than I’ve ever been despite a very challenging physical situation and not a huge amount of support. Here are some of my personal strategies on how to not only survive, but thrive, with chronic illness:

  • I live in the moment.  Yesterday is done.  None of us know if we’ll see a tomorrow.  The only time that exists is now.
  • I do what works for me even if it flies in the face of what works for other people.  For example, I sodding well hate meditating.  It’s BORING.  Yet when I study a flower in order to photograph it, the light, the form, the colour……….I can get lost for hours.  This is where I find my peace, my joy and my spirit, not sitting painfully cross-legged, with my back killing me, breathing through a blocked-up nose trying to not think about thinking πŸ˜‰ .
  • If I’m feeling low, I ask myself the question “if a doctor today tells you you’re terminally ill and have 2 months to live, how would you feel?”.  It makes me look at the world in a totally different way.  I cherish the sunset.  I cuddle my dog more.  I truly appreciate my warm, comfy bed or a soak in a hot bath.  It’s always the little things, not the big, which give us the most pleasure and which we totally take for granted.
  • I have hobbies.  Things I feel passionate about and which bring me a sense of joy and achievement.  When I was bedridden this was designing a newsletter for an ME charity and crocheting.  As I’ve improved I’ve enjoyed gardening and photography.
  • I won’t tolerate bullshit.  I have dumped my boyfriend, close friends, family members and anyone else who either doesn’t support me or causes me grief.  It’s been totally liberating.  I won’t put up with drama or constant negativity, as it robs me of very precious energy.
  • I don’t care if someone likes me, or doesn’t like me, or is totally indifferent to me.  I really don’t give a toss whether anyone approves or disapproves. I live MY life.
  • I learned to say no.  It was life changing.  I haven’t attended a single community event in my small village since I moved here 10 years ago.  The neighbours mostly think I’m weird and anti-social but I couldn’t care less.  I hate group events like Sausage Sizzles or parties and I’m not using my extremely limited energy on things I can’t stand.  This is where having a chronic illness is a total bonus – I can just say I’m not well enough to go and people can’t argue with it πŸ˜‰
  • I have always had rescue animals during my illness.  Cats when I was very poorly and a dog now I’m well enough to cope with one.  They give me a reason to get out of bed in the mornings and their unconditional love and acceptance brings me joy every day. I have never smiled and laughed as much at anything as I have my dog.
  • I’ve physically adapted my life around my illnesses.  I struggle to read, so I bought an ipod and listen to audiobooks instead.  I can’t walk far, but love being outdoors, so I bought a 3rd hand mobility scooter.  I struggled to lift the kettle, so I bought a kettle that doesn’t need lifting.  I’m not a martyr and find the easiest way to do everything.
  • I am accepting.  I don’t fight life.  If a situation can’t be changed (like my health) or my life is affected by things beyond my control (like my best friend walking away) then I accept that and move on.  There is no other choice.  Let it all go.
  • I have a purpose for every day.  Even if the purpose is just resting so that I won’t get too sick.
  • I am happy in my skin.  My looks are fading, I’m losing my teeth and I’m going grey and I absolutely don’t care.  I am unique and I am special and so are you.

The biggest lesson I’ve learned is to live a life that works for me.  I love being amongst nature.  I love animals and watching wildlife.  I don’t care about my appearance and will probably end up like an old bag lady πŸ˜‰  Stuff isn’t important to me.  I do the housework when it’s critical (this from a person who used to be a complete control freak and perfectionist!!).  I quite like solitude and I’m really not a big people person.

It’s more difficult than you think to live your own unique life when we live in a society which constantly tells us what we should own, buy, be.  A society which celebrates youth, beauty and health and makes anyone less than physically perfect feel like they’re worthless.  I watch the Real Housewives who have everything we’re told makes us happy: botox enhanced youth, magnificent houses, pretty children, obscenely wealthy husbands and enviably flat abs.  But not a single one of them is happy.  They are not fulfilled.  They are not joyful.  They do not have inner peace.  And if it were a choice between their lives and mine I’d choose mine every time, illness or no illness.

“Strive to be happy”

 

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7 thoughts on “Thriving not surviving

  1. LivvySheep

    Dear Bertie and Me,

    I have been wanting to write back to you for a few months now, ever since I read your post about your Mom being your closest friend and how you worry about being without her in the future. It rang true to me and my situation and see many similarities in our lives. So i really felt the emotions you were expressing in that post about your Mother. I came across your blog, after searching in vain for info linking both Mast Cell Activation Disorder and Ehlers Danlos Syndrome. So I have read your journey of getting a diagnosis of MCAD with much interest and enthusiasm. I have only been diagnosed with EDS and PoTs since June, however ‘they’ thought I had ME and Eczema for years (despite me saying there was something going on with my joints moving out of place and me seeming to have allergic reactions to absolutely everything!). I have known instinctively in my very insides somehow that making my own food from scratch with quality ingredients would do so much healing, however as you know being bedbound prevents this. I have successfully been able to negotiate carers to make my food from scratch for me, in the recent few weeks and my skin has started to stop blistering and flushing. However like you all manor of ‘taping’ and orthotics cause swelling and rashes. I also have 2 epi-pens, as my throat has swelled before and one pen was not enough and like you I live in the rural North (although its East not West) and the ambulance takes over an hour along all those narrow country farm tracks! …I was concerned to read you did not have some pens too?????

    Anyway, I too have been let down by my best friend, who couldn’t tolerate chronic illness and just simply went there own way and I went mine. Now I share everything with my Mom, but she is getting on in years and it also worries and stresses her, when I tell her too much.

    I was sad to read you had to decide not to go to the conference. I was really hoping to meet you. I’m taking a Dictaphone and have got a hotel room for Mom and me – so she can record it for me if I’m having to go lie down. Maybe EDS UK will put the talk online anyway, for people like you who are not able to get there.

    So keep cooking up your lovely recipe’s with beautiful ingredients, hope you haven’t got blown away over there in the North West?! It’s windy enough here! Lots of Love, LivvySheep xxxxxx

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    1. bertieandme Post author

      Hi LivvySheep

      *Waves* to you over in the East! Nearly got blown away taking Bertie out this aft, but at least it didn’t rain!!

      Really sorry to hear you’ve struggled to get your symptoms recognized. It’s so hard living ‘up north’ when all the specialists are ‘down south’ :-/ I even take offence at EDS UK who organise all their events south of Birmingham – it’s like the North and Scotland don’t exist.

      I’m so disappointed not to be attending the conference, as I was hoping to meet all sorts of people I’ve chatted to online, but I think the effort would just tip my health over the edge and it’s not worth the risk. When I rang to cancel my tickets the office told me that they’re videoing all the talks and will put them on the member’s area of their website, so that’s fab news πŸ™‚ I particularly want to hear Dr S’s talk about MCAD and EDS!

      Yes, the whole friend situation is sad and you can’t lean on parents when they become elderly or ill themselves. I’ve still got my good friend K though, and when we met for lunch on Sunday I told her I was going to handcuff her in my cellar so’s she can’t naff off and leave me πŸ˜‰

      Enjoy the conference and let me know what it was like! Hugs
      Jak x

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  2. JoAnn

    I am newly diagnosed with EDS/POTS, and am starting down the MCAD diagnosis path. I have been reading a ton and am particularly grateful for your blog. It has such a good balance between data and heart. I truly appreciate your work.

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    1. bertieandme Post author

      Hi JoAnn

      Thanks for taking the time to write such a nice comment πŸ™‚ I’m so sorry you’re having to deal with similar issues to me, but glad if my blog has helped even in a small way. Wishing you well. Jak x

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    1. bertieandme Post author

      What a lovely comment to wake up to this morning, thank you! So sorry to hear about your daughter though. My illness has often been just as hard on my parents as on me, especially in the beginning when I was very ill. As a parent you just want to make it all better. Jak x

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      1. Di

        Where I can find your email? My story it’s so smiliar , but It’s really long story. Please let me know where I can find you:)

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