• lindalegs
    lindalegs Member Posts: 5,412
    edited 30. Nov -1, 00:00
    Brilliant spirit Sulkycat :grin::grin: ......the best thing we can do is fight arthur as we can't let him win! Well done!

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Bumped up for Lozza. DD
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    sulkycat wrote:
    Thank you for bumping this - am reading it bit by bit and digesting it.

    I think I am still at 'battling the b*gger' stage (I didn't bother with the why me bit, not a lot of point). Grrr to it.

    I found it hard to alter how I dress etc - can't do buttons or buckles so a lot of my gothy clothes don't get worn. I was delighted when I managed to get a pair of black tights on and could wear skirts again! Rings and bracelets don't get worn anymore, but I have many necklaces and earrings.
    I had my very long hair cut off so it's easier to style and wash now, that was tough - but it's still bright pink, I refuse to compromise on that!

    Sounds trivial, but so long as I can still do my face and eyeliner with bad hands if I need to leave the house then there's still plenty of 'me' left.

    Hi Sulkycat,
    I bet you still look lovely with shorter hair. Just want to say my daughter is a Goth and she has very short hair and wears wigs. I never know if she will turn up with black, blue or pink hair! They aren't the very expensive and still look great.

  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    That's the thing isn't it guys & girls Arther trys his best to stop us doing things like having long hair, buttons and zips and trys to make us stopping being us. But we find away to work round it so Arther can't win and we can still be us, wether it's goths,punks, mods, new romantics or any style you like! No one not even Arther can change us!
    So Sulkycat you be who you want to be! Me I'm just a fruit and nut case! Ask my OH ! :lol:
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Bumped up for lynnhbuckingham.
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Bumped up for Tilly87
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Bumped up for nightswimmer. DD
  • earthspirit
    earthspirit Bots Posts: 278
    edited 30. Nov -1, 00:00
    well what an amazing thread full of wonderful stories!

    a thread about shoes, well how i love it.

    "they" have been told that when i die and get put in a box, i MUST be wearing my high red patent leather stilettos! so that pair aint going anywhere lol

    i last wore them on remembrance day in london last year and i had them on for hours and walked around 8-10 miles that day. i dont know how i did it cos i really cant walk that far at all and how i managed to put them on for a hour or so the next day as i carried on dong something that was for the greater good and nothing about me me me at all.

    since then its beeing totally flats, ballerina pumps in soft leather and my saviour in the guise of UGG boots.

    ive converted to some really yuck clothes since the start of my 18 month flare as i need a huge amout of help with dressing.

    ive had to cut my waist length hair to just about bra level as other people turned out quite useless in helping me there. that wasnt a big deal cos i aint got any ego regards hair - its gets washed conditioned and combed and then chucked into shape. it wouldnt matter how short it was i still cant get round the back of my head to wash and give my scalp a good rub. i had to give up washing 2 - 3 times a week and now satisfy with once.

    i had spent decades without a dx and my flares only lasted at the most about 6 weeks and only affected half a dozen or less joints. i feel very furtunate that i have spent so long without feeling very severe affects or arthur.

    we do have a terrible disease but my acceptance came quite quicklyafter reading everything i could find on the internet about the condition. my very darkest moments came quite recently when i got some dmards to try and they kicked off the mmost awful depression and feelings of patheticness. thats when i started posting on here although i had been a lurker from the day after DX last year. i quickly got that "pick me up" that i needed.

    there are people on here far more physically damaged by the disease than i am and they have not had the years of "practice" with the pain and disability that i feel i have had.

    i dont worry about the prospects of possibly being in a wheelchair as at the very least i will be moving faster than i can when i try to walk. im hoping that is some time away and once again have to sing the praises of the physio people who have helped me keep what mobility i have and who are working on helping me fix the scrawny wasted muscles.

    ive had my heart lung pancreas and liver all "touched" by the disease - but those bits are under control for now - my blood is still playing up a bit but that has been down also to the lack of eating i have done and the total immobility at times. statins are helping more than the dmards for now.

    i long to scrub down some walls in my home but accept i just cant do this anymore but i am hopeful that in the future i may regain some strength.

    i worked with Help for Heroes for a number of years and the limbless young men who will never walk again or wont have an arm, or an eye or who have missing bits of face and tongue have totally humbled me helping others deal with mental health issues and emotional trauma all serve to make me feel so lucky i am not one of them. i have some distant cousin who spent years in the nuthouse because of this disease, way back in the 1960s and feel fortunate that the treatment is so much better today.

    i feel that i will fight this disease and i accept the limitations it may place on my life and the limitations i have at the moment. i can still drive though only for hour or two and had to accept that travelling between london and aberdeen is something i will possibly never do again but i accept that.

    i dont think i could accept if arthur took my mind and made me weak mentally all the time but for now i accept the way i am.

    people have to feel lucky for the life they have had and not the life they might be losing. we still, after all, have life. i treasure what i have and accept what i cant do - rather this life than lying in a bed unable to move cos we broke our back in a car accident. there are much much states of life we could be in and its all about putting arthur into perspective.
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    This post made me laugh to myself and then feel a bit sad

    Im not there yet!!

    When my kids were little they had new shoes every 6-8 weeks so mummy had none but a pair of heels, a pair of trainers and a pair of boots. I loooooovvvvvee shoes. So when my kids got older and my income got bigger I started buying the odd pair of pretty heels, always sale items absolute bargains, I love irregular choice shoes as they are so different but expensive so when they went in the sale I was there. I have 15 pairs of beautiful heels, pretty patterns, colours, and when I put them on I feel gorgeous. For all of 10 seconds then I realise I cant walk in them :x All that time wasted never having them and when I finally have the money to indulge I cant wear them anymore. None have had more than 2 outings despite there being many occasions for each, my 3rd child is the same size as me and has been eyeing them up for years now but Im still waiting for the cure!! :? :roll:
    I have managed to take out my black and white ones when taxiing to a restaurant and back a few times but Ive paid for it even though the heel isnt so big.

    I have kinda accepted my life has changed though and Im just strting to put less pressure on myself and less guilt for the things I cant do. BUt the shooes noooooooooooo

  • creakyowl
    creakyowl Member Posts: 63
    edited 30. Nov -1, 00:00
    I don't post very often but this thread has been an inspiration and has moved me to. Thanks for starting it.

    I have just read it all in one go and yes, I have had a cry too.

    I came back from holiday Tuesday night. I was somewhere warm and arthur was slayed into submission for a few days with sunshine and very dry heat. I've had RA for 12 years and at the moment can see myself deteriorating month on month. I went 6 years without treatment from a rheummy who kept saying "this will burn itself out". :roll: You can guess how that turned out! It was only after my first major tendon tear and a trip to another city for treatment did I get the truth.

    I've struggled with acceptance for the whole time. I have wanted to be like Keith and others but it doesn't happen. I have come to terms with the practical stuff, flat, EEE shoes or worse, no buttons, God's greatest gift to man - elastic :lol: but the one thing that hurts more than the disease itself is what I would call "man's inhumanity to man".

    My OH has NEVER come to terms with it. The night I was told how serious things were he rolled over in bed away from me and said "I can't deal with this" and never has. My 4 kids have been largely impatient and indifferent to it. They tell me I have it, it isn't going to go away so to get on with it. I've been home in the evening from surgery and had to drag myself downstairs to make myself some food or a cup of tea. A stranger once shouted at me in the foyer of a supermarket about my car being in a disabled spot, (I have a blue badge) and told me "your sort are disgusting". What sort exactly is that?

    I still work part time and feel fighting the disease is the only way I can survive, but fighting takes energy and as most of you know, arthur does tend to keep the rations of that a bit short!

    I think that each of you has given me different food for thought and as things are particularly bad at the moment, it has all been very welcome. Arthur's latest gift has been to give me a cardiac arrhythmia and so I've been off work and stuck at home with my lovely family :? for 2 months but at least am going into hospital on the 16th for them to try and burn out the rogue pacemaker cells to get me back on some sort of track again. At the moment my heart goes wild without warning and I nearly pass out, but then it stops again just as suddenly.

    I don't think I have any pretty shoes left to give to the charity shop, but maybe I'll find some tee shirts instead :lol: What I will definitely do today though, inspired by all of your stories, is try to have one moment when I find some peaceful, accepting thought about my situation. Well, it has to be better than how I feel right now.

    Thanks everyone.

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Oh creaky, how very very sad that your family have kinda 'deserted' you. Arthritis just doesn't hit the person who has it, it sends its nasty ripples out far and wide and yes, some cannot deal with it - or even refuse to try.

    I think we all struggle from time to time with accepting this illness and getting on with things. I have arthritis and it isn't going to go away (now that's an odd concept to so many, you go to a doc, you're taking meds and you're still ill? How come?) but for the most part I have accepted that this is my lot and it's up to me to make the best of things. No-one can change the situation, it is what it is and it will do what it will do but in the meantime the esesential me is still there. I have a life which happens to be affected by arthritis, I'm not an arthritic who happens to be affected by life. DD
  • georgie66
    georgie66 Member Posts: 403
    edited 30. Nov -1, 00:00
    dd wrote

    I have a life which happens to be affected by arthritis, I'm not an arthritic who happens to be affected by life. DD

    how right you are DD
    i wish i was the same with food
    i live to eat...and i wish it was i eat to live..

    i struggle with accepting all the things i cannot do any more.
    but this forum at least give me a smile everyday and sometimes a right old giggle..
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    That's very sad and very moving, creaky. I'm in the privileged position of having a family who have all accepted it. I think that, when I had my mastectomy (nothing to do with arthritis) it was a struggle for my husband more than for me but he just made a big effort to accept it for my sake and, pretty soon, he got there. Is there any way way Mr CO can be encouraged to climb on board?

    I think we all have BB stories. These people are ignorant and we shouldn't let their ignorance get to us. Having said that, I still remember my own BB story some 30 odd years on and how extremely upset I was.

    You are clearly not in a good place at the moment and I, for one, would be quite scared in your situation. Please remember that were are here for you, whatever others may do or not do.
  • creakyowl
    creakyowl Member Posts: 63
    edited 30. Nov -1, 00:00
    Thank you DD and SW for your replies.

    Sadly I think if Mr CO hasn't come on board by now, it is very unlikely! I do wonder whether the children see his attitude and assume it gives them permission to be the same. My youngest is the most supportive but will be going off to Uni in Sept and I will miss him dreadfully but I know he will have a wonderful time and I'm so happy for him.

    I'm not in a great place at the moment but I have had a wander in the garden and "chatted" to one of our cats as he followed me around purring at my heels. I'm sure it will be much better once the arryhthmia is treated and I'm back at work.

    Maybe I should post a bit more often? It has been so good today to share it with people who do understand.

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    You post as much or as little as you wish my lovely, we're always here. I've sent you a message - I hope you spot it. DD
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    I'll second that, creaky. Post whenever you wish - you'll be most welcome.
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Bumped up for Northstar.
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    This helpful Thread has been made a 'sticky' by popular request... :D ModeratorIA
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Thanks, Mods.
  • Logbrock
    Logbrock Member Posts: 1
    edited 30. Nov -1, 00:00
    I can't even think straight at the moment, I feel dizzy & no appetite.
    I'm scared of what will happen to me & haven't spoke to anyone about it yet.
    I'm not in any pain just bit of stiffness & sore. I can't seem to even function I'm so anxious & scared.
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Hello Logbrock. Welcome to the forum. Do you have a diagnosis of arthritis? Things rarely turn out as bad as we fear. Could you explain a bit more how things are for you and how you feel? If you start a new thread more people will see your post. Please try to tell us a bit more about yorself.
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    I have OA and I'm 57, I still love fashion though, even it some of the younger members have already written me off!!!

    Most of my shoes are flat and comfortable,but I'm going through a period of wanting to wear the high shoes that are 'in' at the moment. I think its acceptance sometimes but, followed by longing for the old days on others. In other words although I accept I need comfort some days, on others the fight comes through. The most important thing is that the fight is still there but a measure of acceptance carries me through, if that makes sense :shock:
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
    Not sure if I have accepted or not. I only wear Shape-Ups shoes now as nothing else is comfortable enough to walk in but, as I used to run half-marathons, I still feel I will run again one day, even though sometimes I can hardly walk. I still keep a couple of pairs of nice shoes just in case I get to wear them again one day.

    I live on my own so can just sit and rest whenever I need to. I'm not used to sitting about as much as I do and sometimes think maybe most of it is in my head and I should push myself to do things more.

    Work is more difficult (I am a housekeeper) but I tell my boss's wife sometimes when I am in pain or very tired, just to make sure they know I'm not always up to doing as much as they expect. It makes me feel a bit as if I'm making it up, as if I should just get on with it.

    My family know I have RA but never ask how I am and, if I feel tired, they ask if I had a late night or, if I find it difficult lifting the kettle to make tea, they ask what I've done to my hand.

    Most of the time, I am quite happy pottering about doing a bit of this and a bit of that but there are other times when I get upset as there are things I still want to do but I know I can't do the moment. :lol:

    For those of you who are still upset with your diagnosis, please keep talking to us. Everyone is very friendly and helpful. I feel less alone knowing they are here to listen.
  • canyoufelix
    canyoufelix Member Posts: 7
    edited 30. Nov -1, 00:00
    Thought I'd chime in with my 2 pence worth on the subject/properly introduce myself to the forum.

    I'm 24, was diagnosed with Psoriatic Arthritis just before my 24th birthday in December last year (happy birthday!) and have what I think is a relatively severe case of Psa.

    (I appreciate severe is subjective, but I believe it's severe because

    a) My rheumatologist told me that they "knew I'd need anti TNF treatment the moment they saw me" and

    b) I spent most of the year so far unable to walk properly/open doors etc etc)

    Having said that I'm doing a lot better since starting Enbrel, still have a long way to go but I'm in a MUCH better place than my pre-Enbrel days.

    I always wanted to be a musician/singer guitarist but a big problem for me is that whilst I'm a lot more mobile than I used to be my hands still can't cope properly with the pain of playing guitar and the very real prospect of having to abandon my life long dream/passion is staring me right in the face...

    Obviously I can't wear my favourite shoes anymore without being in agony but I honestly think I can handle that (I'm not really bothered about shoes haha,) it's more accepting the idea that the years of practice, the thousands of pounds spent on good musical equipment/guitars is now literally all for nothing - pointless.

    Whilst I know in my heart that only completely foolish optimism would make me think I can 'power on through' and still do what I set out to do, I still struggle with actually accepting the idea that at 24, your dreams are dead. I guess the whole arthritis thing in general is still pretty new to me and I struggle to accept that in general - nevermind what that means for me and my ambitions.

    If anyone has any advice on coping with the transition from "ARGH OMG THIS IS SO UNFAIR WHY IS THIS HAPPENING TO ME" to "I'm ok with this now" feel free to chime in :)

    I'd be particularly interested in hearing from any other aspiring musicians/guitarists and how they've coped with things. I did a google search, but there was only one even remotely 'professional' guitarist with my condition, he died young as a result of the illness (cheerful thought I know.)

    On the bright side I still have my sanity and some pretty supportive friends, sorry if some of that sounded a bit doom and gloom, but like many others here I don't really have anyone to talk to about this kind of stuff, as supportive as friends can be they don't REALLY understand...
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Hello canyoufelix. It’s lovely to meet you but I’m sorry you had to find us. It sounds as if you’ve had a pretty traumatic time – diagnosed at 24 and straight onto anti-tnfs. Admittedly it’s far better than allowing the disease free rein but it must have come as quite a shock to the system.

    You have lost a lot so please don’t push yourself towards acceptance when you must still be feeling bewildered, angry, sad, frustrated….shall I go on? All this will take a lot of getting used to.

    I wonder if the guitarist bit is an inevitable part of your singer/musician ambition? I see no reason why you can’t sing. I can see that the guitar would be a difficult instrument for arthritic hands. I once, many years ago, had a crack at it but couldn’t manage half the basic chords let alone swift fingerwork. Other instruments might be less problematic though. What kind of music do you play/sing? Could you aim to be a singer in a group of musicians? Playing guitar could still be very therapeutic for your hands when they’re up to it but I write that as one who gave up the piano (which I only ever played badly) because I hated the sounds I was making just because my fingers wouldn’t stretch.

    Hey, if you’ve still got your sanity, you’re one up on many of us here. :wink:

    As for friends not understanding…..I don’t think any of us ever really understands another person’s illness. However, you could try googling The Spoon Theory. It’s helped a lot of people to explain it to family and friends.

    Can I suggest that you copy this to a new thread? It’s possible that most people on here won’t notice it, tacked onto the end of this one and I'm sure they'd like to get to know you..

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