Your chronic pain and other people. — Scope | Disability forum
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Your chronic pain and other people.

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onedayatatime
onedayatatime Community member Posts: 17 Connected
Chronic pain restricts what I can do and how long I can spend doing the things I enjoy. DDD, bulging discs, nerve root impingement / compression and facet joint arthritis. But I have learned what my limits are, when I need to stop, to pace myself so I can still enjoy simple hobbies. Non the less, I am more or less housebound. I've got my head around that and adapted.
But, the difficulty I have is with other people accepting that I'm not going out and about. I'm not prepared to have my bones rattling around on a long car journey or to plod about a shopping mall in agony. 
I don't think I'm particularly antisocial, I just know my limits.
So I wanted to ask how you deal with other people, who with the best intentions, constantly want you to do more but at the same time don't quite get your limitations? 

Comments

  • Albus_Scope
    Albus_Scope Posts: 4,081 Scope online community team
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    Heya @onedayatatime I'm sorry to hear people aren't taking no for an answer, I know how frustrating it can be!
    For me, I just explained to my friends that sometimes as much as I'd love to be out with them, I just can't.  It takes time, but people eventually adjust, just as we've had to adjust. :)
    Albus (he/him)

    Online Community Coordinator @ Scope

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    Neurodivergent.
  • onedayatatime
    onedayatatime Community member Posts: 17 Connected
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    Thank you for that and yes, it is an adjustment for other people as well and they must get equally frustrated with me!
    It can be a bit hurtful to be regarded as 'boreing' by some, but I suppose people are seeing a different side of my character that perhaps they didn't see before. 
    I've always had hobbies so have fallen back on my interests to help cope mentally. My hobbies just aren't very interesting to some of my friends!😂

  • Sandy_123
    Sandy_123 Scope Member Posts: 50,404 Disability Gamechanger
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    Hi @onedayatatime welcome to the forum. It's a nightmare isn't it, I'm the same, I try avoid big shopping centers, once I've walked around a shop or two, that's enough for me. These shops can be massive to walk round on their own. I get comments like your too slow  :|  well I'm not going to be skipping any time soon. I think I'd probably end up running everyone over if I tried the scooters they provide. 
    Anywho join in and make some virtual friends who are in the same boat
  • Rosie_Scope
    Rosie_Scope Posts: 2,233 Scope online community team
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    I feel you on this one @onedayatatime, it can be really hard for people to understand that you can't constantly go out to meet them when you're trying to live within your means. I think other members have given some great advice so far. It's frustrating to keep hammering the message into everyone, but eventually it does get through, especially with people who care a lot about you.

    Perhaps if people suggest something that wont work for you you could see if you can find an alternative that suits you better?

    Things like: "I'd love to go to the shops, but do you fancy coming round for a coffee instead?" 
    "The travelling is a bit difficult for me right now, do you want to catch up on the phone/video call instead?"

    Just letting people know that it's not that you don't want to see them or are being anti-social, you just need to do it in a way that doesn't cause you extra pain :)
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • birdwatcher
    birdwatcher Community member Posts: 25 Connected
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    I understand exactly what you mean. I have chronic pain and unless someone actually lives with it I don't think they understand it. It's over two and a half years since I've been out on my own . Cannot physically do it now. I've still got my dog. I will not part with her. She's an old lady now and has a garden to potter round in. So we're fine mooching round the house together. Perfectly happy we are
    I've got one particular friend who looks after me really well. I'm very fortunate. Other friends and neighbours call in now and then. But I remember one particular neighbour ask me if one of my tablets is an opioid. It is,codeine. She then went on to tell me about the dangers of addiction and how I should stop taking it. 
    I saw that edition of panorama( or similar programme )a few years ago . And decided I'd try and stop that particular tablet. Within two days I couldn't walk! She hasn't got a clue!
    Funny enough apart from the intense pain I didn't have any kind of withdrawal symptoms. But did when I accidentally ran out of gabapentin. That was awful! 
    You're not antisocial. You know your limitations . Don't let other people pressurised you

  • JessieJ
    JessieJ Community member Posts: 500 Pioneering
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    As has been said, unless someone suffers chronic, constant pain, they really don't know how limiting it can be. As sufferers, we need to be patient & adapt to less painful ways of going about things & pace ourselves. It's very hard to get that message across to people. They want to involve you, but don't understand the limitations. It does get wearing having to refuse often, but, that's all we can do, politely say no thanks & hope they get the message.
  • onedayatatime
    onedayatatime Community member Posts: 17 Connected
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    Some of these shops really are large and as I am far from being a fashionista with no desire to be the best dressed potterer, there just isn't any appeal for me. I am content to mooch about the garden and also have an old dog who does seem to enjoy my nattering. The sun is out today so I'll potter out there at my table, attempt to grow some stuff and later in the year my son will put them in the ground. I find nature very therapeutic so this time of year is especially good.
    And yes, I also have experienced the opioid codeine lecture! That was given by someone who also had experienced 'back pain' and apparently they the way to do things is to ' fight through the pain'. Apparently I am 'wasting my life' . I have offered that person a gold star for their speedy recovery and top marks for their understanding and thoughtfulness.
    Now I'm off for a mooch in the garden, with doggo, to feed the birds whilst wearing a perfectly acceptable pair of jogging bottoms and top. 
    Wishing everyone a great day and hope you too all have a bit of sunshine.





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