Things I used to do

I’ve been ill since I was 26 and next year I’ll be 50.  I don’t ever dwell on the past or the person I used to be because it would drive me to despair, but for some reason I woke this morning thinking of some of the things I once did that I no longer do.  I used to:

  • Shower every day (not once a week).
  • Play the saxophone.
  • Push a trolley round an actual supermarket.
  • Read voraciously and remember what I’d read.
  • Do dance aerobics.
  • Shave my legs and my armpits.
  • Follow the news.
  • Diet (even though I only weighed 7½ stone, 105lbs).
  • Spring clean.
  • Lift weights (I had a bench press in my house, I needed it to keep my dodgy back strong).
  • Go to the cinema.
  • Have facials.
  • Drink a glass of wine with my dinner, sometimes two!
  • Paint my nails (I now can’t even reach my feet).
  • Work a 12 hour day.
  • Play board games (I had the mental capability then, and someone to play with).
  • Moisturize my skin religiously.
  • Wear make-up.  I could still do this if I wanted to, but can’t see the point.
  • Have holidays abroad – I’ve travelled to 42 countries.
  • Wash my car and lovingly polish it.
  • Play loud music and go round the house dancing like a looney tunes.
  • Go out for dinner and not worry about having anaphylaxis and passing out.
  • Play tennis.
  • Bake birthday cakes for my loved ones.
  • Wear high heels.
  • Take courses to learn new things, like shorthand or the Jitterbug.
  • Go for days out wherever the fancy took me.
  • Do sit ups – I had great abs even though I do say so myself.
  • Have massages.
  • Decorate the house at Christmas.
  • Took tablets without worrying about dying.
  • Go clothes shopping in the city……..for the whole day.
  • Do intricate needlepoint.
  • Eat whatever I wanted.
  • Be spontaneous.

It’s amazing what I used to pack into a day without a second’s thought.  I’d be up at 6.30am, take my dog on a 2 mile walk, come home, shower, have breakfast then drive 20 miles to the city through rush hour traffic for 9am.  I was doing 3 demanding jobs, yet still managed to meet my girlfriends for lunch.  I’d get home at 6.30pm, make my dinner, get changed and either go to aerobics or see my boyfriend.  Weekends we’d often go away for a couple of days, or out with friends to the cinema or for a meal.  In between I’d do housework, laundry, the grocery shopping, see my parents and was in the middle of renovating my 3 story Victorian house, staying up til midnight to strip woodwork, chip off plaster, hang wallpaper or paint dado rails.  It was all so easy, so effortless and without consequences.  It really was another lifetime.

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6 thoughts on “Things I used to do

  1. Livvy

    Jak,
    I know you didn’t write this because you were sad or wanted sympathy but I have to say that I read it and it made me cry… For all the zebra /spoonies out there and how ‘free’ we used to be.. You’ve really captured that. Something generally people on the outside looking in don’t see. I know we adapt and become super humans in our own rights and learn lots if new amazing skills & ways of viewing the world that we would prob never have encounted if we’d not got chronically sick.. It is a bit like having 2 different lives. It is the spontaneous, no cares kinda stuff we miss the most I guess. Ps your car wash episode made me laugh! (Sorry)! 🤗

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  2. chrystalheart

    I read your entry on the EDS website. I’ve been trying to get a diagnosis for almost 30 years. I started having problems at 19 and am 48 now. I printed yours out to show my doctor with all of the correlations underlined. What *really* struck me was that you are having the hypermobility issues *and* “anaphylaxis every time you eat”. In the last couple of years I started reacting to a ton of foods I have eaten all of my life. It looks like I don’t have official “mast cell” disease yet, as far as I can figure out from the doctor jargon, just some indications that it’s moving that way, but I suspect the values will continue to deteriorate over the next couple of years until it is. I feel like it’s kind of a waiting game.. over time you build up enough evidence that finally someone says.. oh yeah! It is an actual problems, we can document it to our satisfaction, here is the label for your mystery illness. Until then it’s hypochondria, fibromyalgia, being fat, whatever.. It doesn’t matter what you tell them. They see what they see.

    I am curious to see how sick I have to get until they figure it out. I now have plunging IGG, high IGE, huge abdominal distension, autonomic problems, muscle-skeletal problems, yadda yadda. Everyone seems clueless. I’m painting a picture for my new rheumatologist (who I see at the end of August) with the diagnostic criteria. I dislocate toes and my index finger and sublux in my vertebrae, s.i. joints, and ribs. I also have a very mobile kneecap. Until I was hit by a car I was very flexible. Now less so, but still more than most. And I have a bunch of autonomic dysfunction. I need better pain management and I’m hoping that diagnosis will lead to that. I had radio frequency ablation of my sacral nerves and shots into my bursas. It helped, but it’s still too painful to sleep.

    Your story, as bad as it is, gives me hope that I can find an answer too.

    Thank you for sharing. And best wishes for health and a good life.

    Jen

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    1. Jak Post author

      Hi Jen

      So sorry you’re having to deal with all this and not getting the help you need. I think that’s a very familiar story to most of us.

      I diagnosed myself with EDS at the age of 42 and hunted round for the best specialist to see for a diagnosis, having to travel 100 miles and pay for the priviledge. It was great though to finally see a doctor who just said “yep, a classic case of EDS why has this not been picked up on before?!”

      The mast cell stuff was MUCH harder as there’s really only 1 Doctor in the UK who treats MCAD and it cost a small fortune, but the relief at finally getting a diagnosis was huge. And I discovered my anaphylaxis every time I ate was actually down to Histamine Intolerance – going on a low histamine diet stopped most of my reactions, so that at least was something I could do for myself at home.

      We do get much less hypermobile as we age – I’m as stiff as a board now most days! Hopefully a Rheumy clued up on EDS will realize that.

      Good luck in getting a proper diagnosis. Let me know what happens.

      Jak x

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  3. d

    I have thought a lot about this post. As I read through your list it brought to mind all the things I no longer do. You get so used to how you have adapted your life to fit with this reality that you can forget what your old life was like at times. Like going shopping for clothes and buying something because it looked nice, not because it was made of 100% cotton. Going to a new restaurant on the spur of the moment (or going out to eat at all for that matter). Making plans that do not involve time for resting. Not checking out any new environment for possible triggers, like some kind of covert operative. Some days I can make note and move on, and some days I can’t. I get frustrated and think I really just want to feel normal… and so I wear the cotton, I eat my limited diet, I plan for rests, I am very aware of triggers in environments new and old, and I hope it all comes together so that I can have a day or days with minimal symptoms, and that is as close to normal as I will get.

    d

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