Acceptance?

claire1234

hi all
i am new to this site and i have found this thread very helpful as now i know after many years i still live in hope of again wearing my heels again and still buy them but after reading on here i may have to find a way of accepting the fact that even though i am having a knee replacement in the next month (at the age of 32) i may never wear them again today is a bad day for my OA and feeling down but have found some thing on here that will help as they have made me smile witch i have not done for a while thank you to all that post it does help

Nicchick

Welcome Claire!

I too found this forum to be so useful and after the frustrations of getting very little information from the healthcare professionals I've been dealing with it's refreshing to actually get some straight answers from 'those in the know'

At 41 (just) I feel far too young to be facing issues like walking sticks and sensible shoes but looking back I can't remember wearing high heels much after the age of 25....

Nic x

claire1234

i not been able to wear heels since i was 18 been living in trainers and stuck using crutches i keep being told what i cant do no ones tells you the stuff you can do but now i think i need to except that it only going to get worse and the list of things i cant do is going to get longer i also have to except that till my family have mobility issues they are not going to understand my restrictions and nor are my friends

Dollfriend

Hi, This is my first time here and I have just spent some time reading through various message strands/strings. I am 62 and was diagnosed with Fibromyalgia 1996. It has taken a long time but I have come to terms with this "illness" and other people's disbelief/contempt and total lack of compassion for anyone with a disability. I was severely depressed for the first two years as my life as I knew it had gone; I could no longer work and I suppose I felt useless. However, over the years I have learnt to enjoy life again, everyday brings something good even on the most painful days... the sun may be shining on the sea, my dogs will make me laugh and my family make me happy and proud to be with them. I spend a lot of time working with my hands creating all kinds of crafts and I find this almost the best medicine as it takes my mind off the pain and discomfort BUT I have to remember to stop or else I will be unable to enjoy my crafts for a couple of days. Recently, I have been diagnosed with Carpel Tunnel Syndrome in both wrists... self inflicted no doubt and arthtitis in my ankles, knees, hips and elbows ........ I had a Baker's cyst behind one knee about 10 years ago but so I suppose it has just caught up with me. :roll:

stickywicket

Hello Dollfriend. It's good to 'meet' you though I'm sorry you had to find us. I'm so pleased you have learned to enjoy life again. There is certainly life - and a great deal of fun to be had - after diagnosis.

It sounds as if you've already learnt some valuable lessons - distracting yourself from the pain and resting up sometimes, preferably stopping just before you really have to, in order to give your joints a break.

How is your carpal tunnel being dealt with? Have you been given splints? Has surgery been suggested?

Please just join in anywhere you like. We are a friendly lot on here and no-one will object. Or, start a new thread if there is something you'd like to ask. I'll look forward to seeing your name around.

Dollfriend

Hi Stickywicket,
Sorry for the delay in replying to your welcoming message; my PC is currently on a blanket box about 18 inches high and I have to sit on the floor during the last few days this has been too painful. :x Fortunately, this is only a temporary measure as my sons are decorating my studio and fingers crossed, I will be back on a chair with my PC on a desk over the weekend.
Carpel tunnel: I have been wearing a splint, as advised by my GP and the numbness and burning pain have gone. I wear the splints on both hands at night now and when I do anything strenuous to prevent any new strain. My left hand/wrist started ther same symptoms when it had to do all the work LOL.
Arthritis: This week my hips, knees and fingers have been especially painfull but hey ho life goes on. Best wishes,
Jane

stickywicket

Good to have you back, Dollfriend, but that sounds like a very uncomfortable position in which to type. I hope things will be much better for you after the weekend and you will be able to join in with many other threads.

Airwave!

If we have all accepted our lot in life as regards arther, we have one question left to answer.


How many times a day do you think of arther? Quite a few I bet! we may be able to forget momentarily but not for long. or is it just ignoring rather than forgetting?

Yours tongue in cheek!

Its a grin, honest!

Dollfriend

Hi Airwave, I totally agree about "forgetting" the Arthritis and Fibro Pain. I know I can force it out of my mind when happily creating something BUT it comes back with vengeance afterwards. Sometimes a low level of pain reminds me not to over do. Yesterday I helped out with the cleaning part of getting my studio back in working order and boy did I have a painful night but I am happily sitting on an office chair at my PC and that pleasure gets all the seratonin whizzing around

Airwave!

Yep, need to get the old grey matter working for you, nice to have that rush of adrenaline when you exercise the body though?

Its not a question of what I can't do, just a matter of what I can get up to next!

Its a grin, honest!

lazicat

Im finding OA so hard to come to terms with, it came on so suddenly & I had THR in July. Ive gone from being active , sociable & capable to my whole life being about arthritis !
It just changes everything , clothes , shoes , lifestyle , even some "friends" have drifted off.
I want to be positive & enjoy life again , but its just so difficult to come to terms with. I dont think my life will ever be the same again.
I often wonder how my husband really feels, he's supportive but I hate being a burden.

lindalegs

Hi Lazicat,

It is so very hard to come to terms with but I think you're getting there without realising it because you're thinking of your husband and the impact on him. You must talk to him and ask him how he does feel, as it's always so very hard on our spouses/partners too.

We all know what you're going through and I promise it will get easier as time goes on .......not without some difficult times too but you will get through those as you learn to adapt.

Hope this helps.

Luv,

lazicat

Thanks , hadnt thought of it like that. I do try to talk to my husband , but he's always got a smilie face & wont let on about how he feels about anything. I just wonder if he looks at me differently now as I look at me differently , still it is early days yet I suppose. Im 50 & he's 47 & hopefully we've got alot of living to do yet - we've been together like forever already !
I gave myself a good talking to this morning & feeling better in myself , pain aside. I know there are people much worse off than me !

lindalegs

From what my husband says they don't see us as we do. He says I'm the same person, same humor and personality. He admits the outside packaging has changed a bit since we married but after 34 years his has too

Another way to look at it is how would you feel if it were he who was stricken down by illness, would you love him any less? The answer, I know already is no you'd just want to help him.

You're already starting to do this because you're not just looking at yourself now, as I said earlier, you're wondering about your husband and that's a good thing. It is hard for them because they see us struggling and sometimes can't help ...........although they are by just being there. Keep thinking of him and it'll help both of you, as a couple, to get through this together.

Luv,

lazicat

Thanks Lindalegs - you have been a great help & so kind x

emic

Hi my name is Emily and I am finding acceptance very difficult.
I was diagnosed with PsA only a few months ago and have no idea what to expect.
I have had symptoms for several years now and before my problems started I was care free,fun loving outdoors kinda girl.
Theres nothing I love more than beefy bass lines and dancing my little bum off all night.
Sadly I can only dance,kind of,for about 5 mins before I have to sit down.
I find it really difficult when friends say 'why are you sitting down?get up here!'. They really dont understand my needs.
I hate telling people why I have not been around for so many months,they give you that look when you explain and say 'your young for that'(30) or 'you dont look sick'.
Also people that know my situation trying to 'help' by taking away my independence. When I have a good day,I dont want people to constantly ask me if Im ok doing certain things and basically reminding me that Im now different.I have experienced a horrible bout of depression and every time I start to feel better something comes along and knocks me back. One of which is my recently rejected DLA claim. I wish I had the positive attitude some people have towards this illness and am hoping with time I can get to that place.
Emily x

Airwave!

Can you tell me what 'acceptance' is, I know that its not fighting it/ignoring/being complacent/complicit. I get weird and wonderful looks when I say 'I can't' then it turns into something else when I say 'I won't' (put myself in the position where I hurt so much doing things for others). I don't live easily with myself and I don't suppose many try to understand me, hey ho, I suppose thats life!

So, a clear meaning...........?

Sorry, I'm ranting!

lindalegs

Acceptance for me Airwave is knowing the person I was is someone of the past and realising I was starting again with a different life but still being myself.

Luv,

stickywicket

lindalegs wrote:

Acceptance for me Airwave is knowing the person I was is someone of the past and realising I was starting again with a different life but still being myself.

Luv,

Maybe it was easier for me as I never had a 'different' adult life. Arthritis has been part of me since I was 15. I don't 'fight' it but I still push the limits. I can't ignore it: it's there. I take it into consideration when doing stuff and I'm realistic about what I can/can't do. I try to look for ways of doing the important things but I never look back and regret not being able to bungee jump or paraglide. There's always enough to look forward to and enjoy.

Airwave!

I suppose this reveals how confused I am by the world, I was first diagnosed at 25, 32 years ago, since when I have managed to do lots of things, but slowly arther has crept up on me to the point when I can't do as much.

Different days mean different problems on top of the underlying pain, I know not what to think or feel anymore.

As lack of income takes me further away from my age/social groups, I wonder at the future. Lack of understanding by those around me is frustrating as anything else and seeking answers leads to more confusion so I live my life as I see fit on the day!

stickywicket

Airwave! wrote:

I live my life as I see fit on the day!

I think that's as good a way as any to live it. I keep banging on about the less flexible the joints are, the more flexible the mind and plans have to be.

The lack of income is a real problem. Disability costs. We can't take advantage of lots of cheap offers because we lack the correct body parts eg our friends often travel to Heathrow via ... can't remember the name but some bus that's as cheap as chips. We can't because Mr SW couldn't manage the luggage plus me plus wheelchair plus tube through London. Consequently, the friends are swanning off regularly to foreign parts while we manage an annual trip to visit our son by not having stuff other people take for granted. C'est la vie. No point in always wanting stuff to be different as it won't be.

What are the 'different days/different problems, Airwave? You can only feel what you feel, acknowledge your feelings and then decide what to do with them. It's a challenge. Who needs the bungee jumping :roll:

Nicchick

Hi Emily!

Tardy response as I've been without a laptop for a while, dodgy hands+wine+laptop=disaster!

Like you I loved to dance and have found accepting the fact that I have arthritis difficult - it came on suddenly and I also had my first claim for DLA rejected. I'm no worse than when I first applied yet when I did a second application I pre-warned my GP that I was applying and just wrote and put everything in with the application. My meds were changing so often that I just put all of my repeat prescriptions in and told them to choose one! I was then awarded high mobility and middle care which amazed me!

I do hope you 'check in' again as the folks on here are brilliant and a great support! I'm now at the stage when people ask me why I'm not doing something they think a 'young person' should be doing I give them all the gory details.......I'm a horrible girl!

Nic x

annmariemc

i was diagnosed in august 2011. it has literaly taken over my life as each medication they give me causes problems on other organs in my body. i have recently had steriod injections in my hips and they now want do both knees as well. this is a nightmare everytime one joint heals somewhere else starts and to be honest i am so fed up of monthly hospital appointmenst and not getting any answers. all i know is that i have an aggressive form of this disease. at the minute im on sulflsalazine and tbh its not doing much. i currently have 2 prolapsed discs in my back and am awaiting an operation, i have been off work for a year and my company have very kindly given me a career break until all this is sorted. all i want is to be able to wear heels again and go for a good nite out without ending in agony the next day. when i was diagnosed i was told my life would be back to normal in 3 months and so far nothing. i would have been at the gym maybe twice a week and doing dance classes now im lucky if i can walk round the shopping centre. ah well rant over lol i dont think people take this thing seriously as in "having a touch of arthritis" this term does not exisit to people who actually have it.

Airwave!

The answer is not to be defined by arther, you are still your own character and you need to remain as such, arthritis is just something that affects parts of your body, not something that takes over your mind.

Having absorbing pastimes is the answer, whatever you do, keep doing them or suffer the consequences of arther. Enjoy doing things, have a lifetime of memories and you have a lifetime of smiles.

We all get off days, it is easy to feel down and accept it as normal, just make sure they don't become a habit. So, I still don't know what 'acceptance' is, but I do know what I do to deal with arther.

It's a grin, honest! 8)

stickywicket

That sounds to me very much like acceptance, Airwave In fact, I think it's a very good definition of it.