Chosing joy

I’m a bit reluctant to write this post.  On my really bad days if anyone says to me it’s not the situation but the reaction to the situation that’s important I want to poke their eyes out with a blunt stick.  You cannot feel joy when you are sleep deprived, in relentless pain and sick to the very pit of your stomach, or when you can’t pay your electric bill.  You are miserable and rightly so.

Having said all that, I’m happier in my life now than I have ever been so I wanted to share with you why that might be, bearing in mind most people would say my life pretty much sucks.

After 6 years of being bedridden with ME I just stopped fighting it.  I stopped looking for the non-existent miracle cure, I stopped being frustrated, I stopped yearning for my old life.  It hadn’t helped and just made me depressed on top of already being sick as a dog.  Instead I accepted I would be horrendously ill for the rest of my life, however short or long that may be, and started trying to find some joy in each day. If I was going to die I didn’t want my last days/months on earth to be crap.

I started playing the “what if this were my last day on earth” game and now I play it every day.  If this were my last day to be alive  I would be ignoring my sickness and my pain and I would be relishing everything – a beautiful sunset, my best mate ringing for a chat, a cuddle from my dog, a soak in a hot bath.  If this were my Mum’s last day on earth I’d relish her voice, her smell, her friendship, her little mannerisms.  Try it.  It really makes you appreciative.

I also needed a purpose, some reason to open my eyes every morning.  So I volunteered for an ME charity from my bed and volunteered to help with an online ME support group.  I could only do ten minutes here and there but I felt I was contributing to the world and helping other people through my experience of chronic illness.  My suffering stopped being meaningless and started being meaningful.

As far as was humanly possible I stopped dwelling on the negative.  I stopped listing in my head all the things which were wrong and started listing all the things which were right.  Every time a negative thought came into my mind I replaced it with a positive: I’m in pain became I’m thankful for my hot water bottle.  I’m lonely became I’m thankful for my dog.  I’m skint became I’m thankful for my beautiful home.  I feel dreadful became I’m thankful for my peaceful country, my peaceful home, my security – can you imagine being sick in Syria or the Congo?  It works much of the time and the times it doesn’t I allow myself to wallow in self pity – it’s impossible to be thankful when you have your head down the toilet vomiting.

The other thing which has helped enormously is to live in the moment.  It’s a much over-used phrase but really stop and think about it.  My biggest fear is having a reaction to something I’ve eaten, and I have to eat at least 3 times a day.  That’s a lot of anxiety.  When I start to feel panicky about an upcoming meal I tell myself this “are you having a reaction now?  No.  Enjoy the moment.  Will worrying yourself stupid about having a reaction stop a reaction from happening?  No.  So quit worrying.  And if you have a reaction you’ll cope.  You have before.  It will eventually settle.”

When your life is literally down the toilet it’s easy to play the “when x, y or z happens I’ll be happy” game.  When I lose/gain 20lbs I’ll be happy.  When I find Mr Right I’ll be happy.  When my pain is under control I’ll be happy.  When I can eat chocolate again I’ll be happy.  When I’m over the menopause I’ll be happy.  When I’m well I’ll be happy”  And all the while your life ticks by and you’re miserable.

I have a friend who has a well paid job working in the one of the most beautiful places on earth.  She has no responsibilities: no children (she never wanted any) and her parents live 300 miles away so she doesn’t have to take care of them.  She works from home so no soul-destroying hour long commute on a packed underground train and, although she does travel a fair bit with her job, it’s in the Lake District with some of the most beautiful scenery in the country.  She is (apart from a few minor niggles) healthy.  She has 3 months of holidays a year, where she takes off to the wilderness for total peace and tranquility surrounded by nature and wildlife.  Most people would kill for her life yet she is depressed and constantly asks me “what’s the point to it all”?  I want to shake her.  If, tomorrow, she’s killed in a car accident or gets diagnosed with terminal cancer her last 5 years on earth would have been miserable.  Why would you waste your life like that?!

I’ve found that, because I’m ill, people want to share their ill-health with me because they’re fed up and think I’ll be sympathetic.  Er, nope.  Are you dead yet, cos if you’re not I can’t work out why you’re moaning.  I’m happier than 90% of the people I know and everyone comments on how passionate and excited about life I appear to be.  That’s because I am excited about life – it’s the only one I’ve got and it fucking beats being dead.

Today is all there is.  Fill it with joy.  Fill it with gratitude.  Fill it with purpose, passion and meaning.  Don’t sweat the small stuff.  Stop worrying about things over which you have no control.  Embrace life – it’s the only one you have.

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15 thoughts on “Chosing joy

    1. Catherine

      Fantastic post and I too share your attitudes. I’m amazed at how many well people are sick in there minds as life is never acceptable to them . They are miserable with nothing seemingly to be miserable about, where I choose mostly to be happy , no matter what! Thank you

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      1. Jak Post author

        It often seems to me that the more people have the more discontented they seem to be. Most of my very sick friends are happier than most of my well friends! x

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  1. Alan Lewis

    Great post Jak. It’s easy for us all to look inwardly and be depressed about things in life which aren’t perfect. And it’s easy to dismiss the little positive catchphrases that people try to use to cheer themselves up… But when you get under the skin of it, it’s all of the things that you’ve said in this post. It’s particularly hard to focus on the positive when there are so many negative things in the media.. I don’t really watch the news anymore because of it. But being happy and grateful for the good things in your life is a great habit to form. It takes a lot of conscious effort at first to develop the habit, but it’s definitely worth it. Thanks for the reminder Jak. I needed it. 😀

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  2. Sarah

    This time last year I was only hoping I could ever roller skate again. After a year off of most foods and learning to eat like a monk, I am roller skating, albeit slowly, twice a week. I watch the fast ones roar by me on the rink and I know I would rather be speedy myself, but to over do it would mean suffering. Pride falls and I am content at my snail’s pace, watching all of the show offs fall. It happens to prideful people like me all that huff and puff and voila: histamine! I am humbled by histamine and have learned that this mortal coil is to be cherished, not abused with shoddy eating and then expecting to conquer the world. I am learning contentment in fits and starts and your post really helped me this morning as I spin from anemia. I am still here. And I’m learning. That’s victory. So glad to find your blog!

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  3. d

    Great post Jak – you always know exactly how to put things. You are right, we spend too much time in our lives not living in the moment, worrying about whatever may come. This post was a great reminder to get back to today’s life and enjoy what we have.

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  4. kneillbc

    I was speaking the other day to a fellow ‘mastie’, and she said that people who have gone through great suffering, and managed to find joy/happines/purpose are the happiest people on earth. That it’s almost like there’ a ‘secret’, that you learn only through giving up control, deciding to integrate your illness (or other troubles), as well as things that you mentioned like gratitude, mindfulness, etc.
    Have you read John Kabat-Zinn’s book called “Full Catastrophe living’? Im sure Ive mentioned it to you before. For people who aren’t managing to find that joy, that book will tell you how. I found it very easy, and so incredibly helpful. As you know, I’ve gotten a lot sicker recently. At my worst, I no longer had the mental strength to meditate, or be grateful, etc. I can do it a bit again now- but my brain and body are so tired and weak. Thank- you for reminding me that I know this stuff, and I know MCAS fluctuates like crazy, I’ll get more of that joy back, I just have to get back into ‘habit’. Perfect timimg my friend, perfect timing.
    Karen

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    1. Jak Post author

      Karen, when I have relapses there is zero gratitude going on! You wouldnt’ be human if you could find joy in puking, insomnia, life-threatening reactions, pain and suffering so don’t be hard on yourself for struggling – you are having a horrendous time with your health at the moment.

      Yesterday was a bad day for me hormone-wise, so I just accpeted I was having a bad day and relaxed into it. I cried at stupid puppy adverts on the telly and collapsed on the dressing table while brushing my hair with sheer exhaustion, asking God why he had to put me through such constant fatigue. There was no joy in that.

      As you know, I’m not one of these “find joy in every situation” people – it’s poppycock. You do brilliantly to cope as well as you do with all you’ve been through this year. Big hugs to you my friend.

      Jak x

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      1. kneillbc

        Thanks. It’s literally turned into a 3 ring circus.

        I saw this today, and Im sure you know 99.9% of it, but its always good to know what the docs have been taught. Hey…it IS being taught in medical school… 😀.

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  5. Rebecca

    Hi this is a amazing hard life for you , is this the results of your mast condition, I’m hearing bout life and how we need to just get on with stuff, and the fear of eating foods that you may react to is something I deal with everyday and have just got over the fact that Ifvi will react or not. I haven’t been diagnosed as here in Australia the doctors have no idea or my doctor doesn’t lol. Hopefully they may find a better treatment for these types of conditions son. Keep your head
    Rebecca Australia nsw

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    1. Jak Post author

      Ehlers-Danlos is a genetic condition which you are born with. People with EDS have defective collagen. However, mast cells live in collagen so an estimated 1 in 10 people with EDS will also have Mast Cell Disease. So it’s the EDS causing the MCAD, not the other way round.

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