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just want todo nice family things without being in pain

Posted , 5 users are following.

sarapainfree
sarapainfree

so after being stuck in the house all week with the kids as it's half term decided Togo for a short walk around the shops big mistake within 10mins bang the sharp stabbing pains was back in my legs having to stop and hold on to the shelves in the Isle looking silly people looking at me like a freak why carnt I just do something nice without feeling this horrible horrific pain this condition is ruling my life and the time I get with my family

1 like, 18 replies

18 Replies

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  • minnie4
    minnie4 sarapainfree

    Posted

    I've been on crutches for months and when I'm not using them I'm in a wheelchair.  Everything everyone says I totally agree with.  It's pain pain and more pain.  Mentally I am strong, bloody minded and determined but that doesn't hold any weight when the illnesses determined grip is stronger.

    i could list all my aches pains and problems but they mirror everyone else's and dwelling on them or thinking about them brings them to the forefront and I forget the positives.  Are there positives?  I think so.  I don't believe, unless they invent the magic cure, life will ever be the same but it doesn't mean it has to be a bad thing, just different.

    my crutches to start with were embarrassing, humiliating and frustrating.  I now see them as queue jumpers, seat providers and conversation starters.  I guess what I'm saying is I turn a negative into a positive - sometimes I have to dig very deep to find it, but for my mental wellbeing I will find it.

    Today it's been social workers, hospitals and pain management.  The outcome was a special bath, more pain killers and hopefully an unbroken nights sleep - we will see.   I will try anything.

    • sarapainfree
      sarapainfree minnie4

      Posted

      thanks Minnie for reply what

      u say actually does make sense u carnt just focus on the negatives as many as there are other wise u will just drive your self mad altho when I'm in pain and have to cut a journey/trip of some sort short I do get angry with my self and just wish I was the person I was 2years ago I'm also starting my pain clinic first week of match how do u find them?I'm also waiting for occupational therapists to come see me next week along side with a thysieo person hopefully I will get some aids especially needed in the kitchen and for the bathroom take care x

  • minnie4
    minnie4 sarapainfree

    Posted

    Pain relief clinic is a bit like going to AA.  You have to accept you have this illness and there is no cure only pain relief that will not take away all the pain.  Once you've done that I believe is when your ready to start climbing up the hill again and most importantly start listening.  For instance, I freak every time another dent arrived where the muscle had wasted believing if they didn't get me moving I would be a bag of jelly in a wheelchair anyway.  Once I stopped panicking and pushing myself to do 'normal' things I actually heard them say 30 minutes of moderate exercise is all that is needed to maintain my body .......the dents were because of trapped nerves etc.  That 30 minutes starts as soon as your eyes open,myou do very light exercise while laying down, then tea and toast, getting washed and dressed.  That believe it or not takes 30 minutes.  Everything else is a bonus!

    somethingbelse I have been occupying myself with is this gaping great hole in the support system for all people with issues like us and worse.  I had assumed that disabled be befit gave enough money to lead an ordinary life, that help would arrive in the form of shoppers, cleaners, cooks etc until I was back on my feet.  What I discovered was the polar opposite.

    i use care cars for my hospital visits.  What would cost £30 round trip now costs £10.  My chemist will deliver my prescriptions.  My dr will do telephone appointments.  Supermarkets do home deliveries and a note on the bottom of the list ensures the delivery is put in my kitchen and the driver even puts the frozen stuff away for me.  Internet for clothing and if I get it wrong eBay to sell it on.  I am gradually building a new normal but there are still big holes such as getting cash from my account, getting to the dentist, hairdressers, etc.  I want to choose my own food and supermarkets supply scooters but no way to get there and taxis are too expensive.

    i think this is a fabulous opportunity for individuals to support one another.  I can't drive or lift anything - an empty dinner plate is a challenge but I can complete forms, make telephone calls and help with administrative things.  Starting support groups for the mechanics of life rather than swapping medical notes and emotional support could be the way to go as I find isolation is a killer and helping distracts you from your own woes.

    dont get me wrong,I have days where I want to beat my chest and scream at the injustice I have been given but as each week passes the time spent beating gets less as I balance my life books in favour of Bing optimistic 😊

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