Hi all!

Joeycheeks
Joeycheeks Member Posts: 2
edited 19. Feb 2019, 10:19 in Say Hello
My name is Joey and I have had RA and OA for 41 of my 47 years and Fibromyalgia for the last 5. I have had total hip replacements, shoulder replacements and am waiting on elbow surgery. I also have recurrent carpal tunnel in both hands and following sepsis in 2017 I now have Atrial Fibrillation.

Despite that I try very hard to lead as normal a life as possible but it’s getting harder.

I’m a mum of 2 children aged 7 and 5 and have a complete fear of asking for help and to allowing people to help me, as then I feel like I’m giving up and letting the disease win! Even when I desperately need help I will say I don’t and then regret it later

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello Joey

    Welcome to the forums on behalf of the moderating team. If you have any problem using the forums do send us a message and we’ll do our best to help.

    You certainly have not had an easy time of it, but despite your health issues are living a very full life with two young children.

    Independence is probably what has kept you going, but can also be our downfall as you quite rightly say; refusing help you need and regretting it later on! I am a little bit like you, but have learned to accept help from one or two people over time. This hasn’t made me weak or dependent as I thought it might. Instead it has helped the people who I allow to do little things for me to feel useful. One has told me that watching me struggle made them feel useless.

    So actually accepting help can be helping someone else!

    Please do join in wherever you like the members on here will be very welcoming.

    Best wishes

    Ellen
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi Joey and welcome from me too.

    Wow! That's a tough call! I can understand the RA rocking up when you were aged 6 as, unfortunately, we see all too many children on here (Well, their parents) but, for OA to start simultaneously, is rough indeed. My OA only came later as a result of there being no modern DMARDS when I was first diagnosed with RA in 1961. Luckily, I don't have fibro. I've had hips and knees replaced but am hanging on to my other joints :lol: Many are self-fused anyway so not very painful now.

    My arthritis was at its worst when my sons were young. I'd had no replacements then but the OA had already joined the party. It's not easy, is it? Luckily, I have a very good husband and my Mum was great though she lived a couple of bus rides away so only came once a week.

    I think it's good that you're acknowledging your fear of help as being the problem that it clearly is. We all need help at times whether or not we have arthritis and, equally, we can all give it, in one form or another whether or not we have arthritis so it doesn't have to be something to fear. There is no shame in having arthritis or in being unable to do some things that most other people can do. In once sense I'm lucky now in that I do look very much as if I have arthritis so I find I get lots of offers of help some of which I accept gracefully and others of which I decline equally gracefully explaining that (like you) I value my independence, such as it is, and want to do all that I'm capable of doing.

    I can't help but wonder what help you do get and how you can function without it. Do you have DLA / PIP? Help with housework? Family and friends around and willing?

    Maybe try starting small eg next time someone offers just accept saying how helpful it is. Or even ask for something small. You would not be the first on here to enlist the help of the postman / woman in opening a jar or, worse, the dreaded bleach bottles :mrgreen: Perhaps it's just a matter of training yourself to ask and accept help. Believe me, it doesn't stop us from being independent: it actually helps us to maintain our independence. And, as Mod Ellen says, it makes others feel more comfortable around us as people can feel very shut out if we don't 'allow them in'.

    What meds are you on? My life changed considerably for the better once I got on methotrexate and hydroxychloroquine.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I have psoriatic arthritis which began in 1997 when I was 37, this led in turn to osteoarthritis diagnosed in 2011 and then fibromyalgia. No joint replacements as yet because I was too young (aged 52) and now won't bother as everything else is so much worse the thought of being 'better' in a couple of places is scary. :lol: For the PsA I inject weekly methotrexate and fortnightly humira, for the OA I manage on 30/500 cocodamol twice per day and exercise to keep my muscles as strong and flexible as possible.

    I was born with auto-immune issues so am deliberately childless which has been ideal. I managed to work for 17 years and was self-employed, another boon. I truly don't understand the reluctance to ask for help, I realised years ago that if I get others to do the drudge grot that leaves me free to use my limited energies on the enjoyable stuff. I use my DLA to pay for a cleaner and the other expenses involved with being disabled. DD

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