Simple things others take for granted – How accessible is your town?

I have had a few run ins with people who pay you lip service when they are talking to you about living with pain, some people just do not get it. Now this is not for one minute woe is me, my live is so bad, because truth be told I am happy, we’ve been married 9 years this year, we own 50% of our home having not go on to the housing ladder until our more senior years. We have two lovely children who we are very proud of, we have an amazing group of famiends and yes of course if I had a magic wand I would change one thing about my life (not the thing you are all thinking though I can guarantee you that. I do however get frustrated with two sayings the first one being surely it can’t be that bad, yes constant chronic pain really is, and secondly oh I remember when I tweaked this/that I know exactly how you feel; no you really don’t. There is a quantifying statement I want to say with this last sentence and the one statement and that is from fellow chronic pain sufferer’s when they compare their pain to mine and say it’s nothing like how bad you have it – now I love all my fellow spoonies and I firmly believe we should not be comparing chronic pain amongst ourselves. I have learnt that being disabled is the one minority group that doesn’t discriminate we accept anyone we also know how frustrating every day tasks can become and for many of us regarding of our disabilities these frustrations are different degrees of the same issue. I have friends who tell me they are lucky as their pain is not as bad as mine or not on the same scale yet they’ve had it 10-20 years longer than me. Chronic Pain is Chronic Pain and if you have it do not compare it we all feel it differently, at different times and in different ways.

This said I thought I would share a few everyday tasks I used to take for granted (I WAS JUST AS GUILTY AS EVERYONE ELSE BELIEVING I KNEW WHAT IT WAS LIKE TO BE DISABLED BUT I HAD NO IDEA) that now make me think bloody hell and use up spoons;

  1. Going to the toilet (no such thing as a quick trip or stand anywhere anymore)
  2. Wiping…………lets leave it there…………..
  3. Showering
  4. Shaving head/face
  5. Drying myself
  6. Brushing my teeth
  7. Dressing
  8. Wearing clothes (on real bad days even the touch of clothing is unbearable)
  9. Standing up
  10. Getting out of a chair
  11. Getting in a chair
  12. Walking/popping to the shops
  13. Shopping itself (negotiating spaces, having to remember dropped kerbs,
  14. Day trips out (now need meticulous planning down to the weather changing what we do or where we go)
  15. Cooking
  16. Filling a washing machine
  17. Emptying a washing machine
  18. Filling a dishwasher
  19. Emptying a dishwasher
  20. Peeling veg
  21. Cooking
  22. Carrying food/drink (try doing that on two crutches or in a wheelchair)
  23. Holding cups/pouring a kettle/milk carton/fruit juice etc
  24. Coughing
  25. Sneezing
  26. Blowing my nose
  27. Open doors
  28. Close doors
  29. Typing
  30. Writing
  31. Laying/Sleeping
  32. Undressing
  33. Putting footwear on
  34. Dropping something
  35. Missing a bus (there is no such thing as running if you are late)
  36. Trying to surprise my wife/be romantic
  37. Watch live sport
  38. Visit sports stadiums
  39. Watch Bands
  40. In my hometown take my LG to the park
  41. Entertaining guests (yes even holding a conversation is tiring)
  42. Laughing

Now this list is exhausting but it is by no means exhaustive this was what I came up with in about 15 minutes with next to no thought. It has been this way for many years now and it is why I can be tetchy, unresponsive or dismissive when someone says I know exactly how you feel, just like I have no idea what it is like to be deaf or blind, you can try to imagine but you cannot really feel. Everything I do in a day takes up spoons and some days it means others sacrifice themselves for me, it is what is, there are others worse off than me, there are others better off than me but I am unique as all 7 billion odd of us are do not forget it and do not pretend to know how someone else feels.

For example at a recent meeting I had someone say proudly but we live in a dementia friendly town (the first in my county and we are proud of that), so we must be geared up for you. Now it is true that many people with dementia cannot do a number of the things above having seen my own family members suffer from Alzheimer’s I know how true this statement is, but it is for very different reasons. The person (read Councillor) said there can only be a handful of shops you cannot get in. Next time anyone is local to me, actually you don’t even have to be local to me, next time you go out imagine everywhere you go, you cannot get up and form of step more than about a centimetre high without help, then let me know how many shops/estate agents/eateries/services in your hometown you have, and how many you could not use with the help of a stranger or a shopkeeper even in the 21st century you’d be surprised.

In spite of all that I have said though remember this above all else

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2 thoughts on “Simple things others take for granted – How accessible is your town?

    1. That is so true, my blue badge is seen by others as some sort of awesome golden ticket to willy wonkas chocolate factory and struggle to see how it enables me to buy stamps or milk, or post a letter etc consideration is a great word we all need more of it!

      Liked by 1 person

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