who do you suggest I contact when apart from pain and disability (OA) is my fear for the future

HelenP
HelenP Member Posts: 22

not sure what 'body' means - presumably more information. Here goes then: I've had OA initially of the hip for at least 5 years which I managed with the help of an excellent osteopath in Devon. Since moving 3 years ago and finding driving in this area (suburb of Bournemouth) terrifying, I couldn't find the help I needed other than local GP surgery - which promptly combined and moved further away. Anyway after months I got referred and the 'stand in' Consultant I saw was nothing short of rude, negative and frightening. Consequently my blood pressure raised and the hospital, by return of post, told me I was off the waiting list. That was exactly a year ago and apart from various gps wanting me to take anti-anxiety pills which make me feel dreadful, I've just carried on. Last Sept I asked if I could have cortisone injections in my knees which are sometimes worse than my hip and was told I would need more x-rays - this would involve a driver and carer and cost me about £50 a trip. I am now becoming inward, scared, demoralised and haven't socialised more than once in the past year. I have contacted various centres but all involve travelling which I can't really afford - there are no accessible buses without walking, no shops I could get to alone and no community centres. Only the local Baptist Chapel has me on their radar and of course I email people. I would so love to talk to someone who feels isolated and in pain and who can't get a sympathetic ear in their local surgery. I'm not a moaner, I'm not depressed but I am alone and it simply isn't healthy.

Comments

  • Bluebell7
    Bluebell7 Member Posts: 41

    Hi Helen P,

    welcome to the forum,

    I'm so sorry your feeling isolated, I worry about the future to.

    what are you taking for the pain? Some GP's just don't get it.

    They think it's anxiety when it's not.

    Talk to us, we can help keep you company.

    hugs

  • YvonneH
    YvonneH Administrator Posts: 759

    Hi HelenP,

    welcome to the forum, it’s really great to meet you, what a shame you had to move from your familiar patch, when we have a long term chronic condition it is more hard than usual to settle in. You would have thought that when your notes were transferred over that your treatment would have flowed on too.

    Did you get referred to an orthopaedic consultant regarding your hip? Then a setback in getting x-rays for your knees. If we have to go to the hospital and have mobility issues we can ring for hospital transport. You do have to be ready early before your appt and you might have to wait for a pick up, does your hospital offer that? Sometimes there are volunteer drivers who will take those with no transport, is their a 'friends of ... hospital' , they might be able to give advice.

    I’m attaching a link to our booklet on Living with Arthritis which has sections on social services and on benefits which might prove helpful to you

    You could also consider signing in here regularly to chat to others, offering support and friendship - I have a feeling you would enjoy visiting our cafe, just introduce yourself, they are a great bunch of people who enjoy gathering for a chat, a cuppa and some cake - the last two virtual

    Take care

    Yvonne x

  • frogmorton
    frogmorton Member Posts: 26,666

    Yes do come long and join in with us honestly it helps. Once people start talking to you you feel so much less isolated Yvonne is right.

    I tend to agree with her about the transport too use the hospital transport if it's available.  Yes it makes it a longer day, but it's cheaper and you might meet some nice people.

    As for your knees hurting - I am sure that very often it's the joint nearby/below the one which is affected by the OA which hurts the most😕 not sure if that's because we try to avoid hurting the sore joint (your hip) and the knees of course are taking the pressure.

    Keep posting - keep talking ((()))

    Toni xx

    Love

    Toni xxx
  • HelenP
    HelenP Member Posts: 22

    this is just to say thank you so much for the comments - very touching and helpful. In the present health crisis nationally I think it's just best to stay away from surgeries and hospitals. I'm managing (on 3 ibuprofen spread over the day) which are not recommended according to my blood pressure pill warnings .....it's the loneliness that has caused so much of my problem - hopefully with Spring coming I'll venture out with the rollatorr I've bought .......I will keep in touch - it's wonderful to know there are people out there who care!

  • dreamdaisy
    dreamdaisy Member Posts: 31,558

    My future nearly ended when I was eight so that taught me not to worry about it. My first arthritis began when I was 37, the second diagnosed when I was 52. I am now 60 and although not living an active life it is still full: I read, do puzzles, sew, make cards and keep in touch with friends via the phone. I am fortunate, however, in that although my decline involved moving to a more user-friendly house I stayed within the same town.

    I have never actively sought the friendship of other ill people, all too glomy methinks! Sharing a disease is not necessarily the foundations of a rewarding friendship and many people love to bang on about how grim things are etc., preferring to look in and down rather than out and up. Having said that, I have made two close arthritic friends through here, and the one thing we rarely talk about is the disease, thus not giving it the priority it thinks it deserves. I am very lucky that my health has been compromised since childhood so my coping strategies are long-established and well-practised. This must be so much harder for you but talk to us, we get it because we've got it. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • HelenP
    HelenP Member Posts: 22

    dream daisy - I too am embarrassed when old friends from Devon ask me how things are - I'm sure they would never wish to know that their friend is lonely, scared and so on, so I make little of it. dream daisy I will get through this but as you have done perhaps a more user friendly area would be my answer but the thought of moving just now is a bit scary! Hopefully something will turn up. I'm appreciating the kindness of this community that I'm new to and it's taken a bit of courage to open up this far! Thank you dream daisy. Helen.

  • dreamdaisy
    dreamdaisy Member Posts: 31,558

    Hello, I am away so having a break from the forum but I have been thinking of you. When people ask me how I am my standard reply is 'I could be better, pleased I'm not worse,' then I move the conversation on.

    We do understand because we are all in our unique boats rowing hard: we all have our better days and those when it's all too much; today is one of the latter for me, birthday plans had to be adjusted and then abandoned. Hey-ho. I'll look in again on Wednesday. DD

    PS. Arthritis is a case of mind over matter, I do mind but that doesn't matter. 😉

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • HelenP
    HelenP Member Posts: 22

    dear daisy - yes bad days for me are just needing company. the present virus crisis is frightening me greatly. mind over matter? i get that thrown at me too ....... at least i read the other day that hope is stronger than fear which i try to think - they will get to the bottom of it sometime dreamdaisy.

    sorry the birthday plans went wrong - birthdays are so special. in a few days the sun will shine for us dream daisy - nothing can stop nature rebuilding itself and that includes us! we will conquer it!

    love to you helen

  • dreamdaisy
    dreamdaisy Member Posts: 31,558

    I'm finally back home and feeling better just for that. Just as well really because my GPs surgery has been no help whatsoever (as detailed on my thread on LWA).

    I am not bothered by Corona virus because suddenly the world is doing as a matter of urgency what I do as a matter of routine. The drugs I take for my PsA reduce my immune system to virtually nil, thus leaving me more open to infections. I rarely get bugs because I frequently wash my hands, use anti-bac wipes etc. It's the healthy who jeopardise what they take for granted, that and disgusting Chinese food markets. In the ten days before we went away I came into contact with four people who were all recovering from colds but, because they felt better, 'knew' they weren't infectious. They have no concept of being immuno-suppressed despite my telling them what it means.

    My birthday was good, my husband's the following day also went well. We were fortunate with the weather, cold and sunny, but it is much nicer being ill at home. 😀

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mike1
    Mike1 Member Posts: 1,714

    When people ask me how I am my standard response is "triffic", people that know me smile but if I get a response such as "that's good" I merely say that I am being sarcastic which usually ends the conversation which is fine by me!

  • HelenP
    HelenP Member Posts: 22

    I understand that one Mike - I avoid making an answer if my daughter asks me (phone call only) - I've learnt that if I say I'm lonely, depressed, afraid, in pain or any of the other truths all I get is a big sigh and 'I don't need this' from her - she doesn't mean to be hard as she's up to her neck working with a young family - but - just sometimes if only she'd say 'poor old you I'll try and pop in to see you soon'. I wish. But then Mike - I compare myself with others - and I'm lucky really. Yes I am I am !