Acceptance?

dollymixture

I can't wear shoes because of my swollen feet and I am so envious of other people who can not only walk without effort but look glamorous in classy, stylish shoes. I have to make do with slip on's that provide a good support to my ankles.
I know I am not going to improve at all as far as my osteo arthritis is concerned and I have accepted that but I just wish I could wear half decent shoes just for a while. I hate the thought of anyone looking at my feet, I feel so embarrassed, they are horrible.
I always try to concentrate on the good things I can do so I won't get down, I like to keep my hair looking nice and always make an effort and put a bit of lipstick on every day even though I may not go out.
I am so pleased I found this site to discuss how things are, not everybody is so understanding.

Suestpeters

Hi DD

Know what you mean about the shoes - I'm 5ft and my lovely hubby is 6 ft - what a pair we must look with me in flatties most of the time. However, last winter I splashed out on a pair of Fitflop trainers (in the sale mind you) - I was at a low moment and fed up of wet feet and sore toes - they are ace and support my ankles too, but most importantly I now have street cred with my grandchildren

So perhaps I have given up the high heels but have managed to find some ace trainers along the way - I suppose that's a little more progress on the road to acceptance, for me anyway. I can't run anymore but my footwear makes me look as though I just might be able to !

Love Sue

pepperflo

Some days I feel I have accepted that I have RA among other ailments, then other days esp when I'm feeling down and sorry for myself I know I haven't accepted it after all these years, maybe it could be that I don't seem to get any relief at the moment even from all the meds I'm on.
My Shoe situation, I have never been able to wear high heel shoes, never been stable on my feet, could even fall and cruckle off the smallest pebble, but do like nice srappy shoes, and have a wardrobe full of them, but like most of us, they have sat in the bottom of my wardrobe unworn, and slowly getting replaced by soft, wide leather velcro fastening shoes, that not so many moons ago I would have classed as very old fashioned, something my Nan would wear.
I go to clear my shoes out line them all up, then somehow end up putting them back, to me that is a sign of denial, so maybe I'm just not ready yet to hang my shoes out to dry :P

RoseEllen

Hi, well, I was diagnosed with RA in July 2009, and I most definitely havent accepted it!!
I hate not being able to wear the shoes I like, I hate that I cant walk at a reasonable pace, I hate that people look at me struggling and obviously think "she looks ok to me"
Will I ever accept it? Who knows, but not for a long time thats for sure.
I work with kids four days a week, its exhausting, but I need to work, for self esteem reasons, and for financial
My physio has told me to cut back on hours, but at the moment thats not an option
We all have our own ways of coping with these illnesses, and we need to be strong, theres so much of life to live

Suestpeters

The final para of your post is sooo positive - good on you!!!

Love your profile picture - how do you do that, I would love to upload one of my own?

Sue

Greenlily

hi everyone
Shoes are a problem in our family generally except for no.3 daughter who wears whatever she wants :shock: . I stay mainly in trainers and lace ups but also in gold leather flip flops which are this years best buy. I can't walk out in them because there's no support or impact protection but gold looks great and I 'm chuffed with them. Land's ends kids for those who can wear size 5. My anguish is mainly my hands at the moment and as a gardener and knitter and sewer its all a bit frustrating. I have a short list of rude words which I use more frequently like now when it hurts to type, dress etc etc but I enjoy the chat as I live on my own and need to get a bit of a smile... :P My helper is due in a minute and we will go and attack the jungle I call a garden. Hey ho.
BTW it can be worth saving the really precious things. I've just started wearing a saddle bag [vintage] over my chest as they are all the rage now

Helenbothknees

Earlier this year I decided to give away all my shoes with heels, as I couldn't see myself ever being able to wear them. To make up for it, I was going to treat myself to a pair of really outrageous flowery Doc Martens, since I had plain black ones (the shoes, not boots) and found them great for walking.

Then I got on the waiting list for knee replacements. Now, 5 weeks post TKRs, I'm wishing I'd bought the platform heeled, peep-toed, slingback red shoes I was coveting a few months ago. It may be daft, but I think I might be able to wear them now, some day in the future.

Not sure what this says about acceptance...maybe more about my love of shoes.

stickywicket

Whoa, you guys!

This thread was originally about ‘Acceptance’ and shoes were just one aspect of it. Now it seems to be all about shoes. (Helenbothknees, please don’t feel I’m blaming you. It just seems a general trend and I’ve only just noticed it.)

I know shoes are important to a lot of women but, hell’s bells, there’s more to arthritis than being unable to wear the latest fashion items. If that’s the only problem you have, you’re doing great. And, if anyone thinks I’m only writing that because I’m an old biddy, I promise you I felt the same when in my 20s and 30s.

For my money, acceptance is about knowing your limitations and learning to enjoy life within them, making the occasional break for freedom in full knowledge that you’ll pay for it later but it’ll all be worthwhile, determining to be neither a whinging invalid nor a nauseating martyr and using the pain in a constructive way to empathise with others. It certainly isn’t about shoes and I don’t think for one moment that Collywobble, who started this thread, thought it was either.

canyoufelix

Fair play Sticky, it was hard not to blow my top reading up on how difficult life is when you can't wear high heels...



Acceptance for me was spending all Christmas /my 24th birthday barely able to move and having to accept that things wouldn't get better for a while, if ever.

It was having friends look at you and say "wow mate, you look like ****, where's all your hair gone? Why are you limping? Why can't you do anything with us anymore?"

It was knowing that your life dream is pretty much dead before you're even 25 (musician.)

It was genuinely not knowing whether or not you'll be disabled by 30 and praying that the next combination of drugs that WILL make you feel like absolute hell/make even more of your hair fall out is the right combo that means you'll be able to move without wanting to cry.



I appreciate that anything that changes your life/routine is probably a big deal to you, but if the worst of it all is turning 50 and realising you can't wear pretty shoes then you have idea how lucky you are.


(From someone who's 24 and has only just recently started to be able to walk without being dosed up to the eye balls on codeine. Rant over...)

Lupin25

I'm having acceptance issues at the moment. I've had RA for 22 years and have had to come off Humira, which suited me so well, had surgery on my foot which left me with buggered knees and as a result am unable to walk any distances. After much putting off my husband and I had "the talk".... we have admitted I need a wheelchair.
Not a big thing some of you may say, but to me it is. I have always been so fiercly independant.
My husband scanned all our photos onto the computer recently & I found myself mourning who I used to be... I know I'm still me, I think I was mourning what I used to be capable of.
I also know in time I'll look back at this & (hopefully) laugh, because I will have adapted to my situation - as we do, because we have to.

suzygirl

For my money, acceptance is about knowing your limitations and learning to enjoy life within them, making the occasional break for freedom in full knowledge that you’ll pay for it later but it’ll all be worthwhile, determining to be neither a whinging invalid nor a nauseating martyr and using the pain in a constructive way to empathise with others

Sticky, I love that sentence, it is a good way of quickly summing up. Arthritis causes many losses which we mourn, but accepting means we grab every moment life throws at us and make the most of it. I certainly try to do that, despite everything. It is hard at times, but I think it is important to try. Some days it is easier than others

canyoufelix

No offence was meant...

I originally was reading every single comment on this thread - I came to the forum because I was obviously interesting in reading what others had to say on the matter of acceptance, the process they went through, how they got from denial to 'I'm ok with this' etc etc.

I then started to skim as every comment I saw was about shoes, but even then practically every comment was about shoes so naturally you start to think

"Bloody hell, people don't half like shoes on here don't they."


I'm not assuming anything, judging anyone, it would be completely absurd to do so. I can be pretty blunt but I wouldn't dream of assuming that I know everything about someone after reading a few posts on an internet forum. Having said that, the comment stands true, i.e.

If I got to the point where the only worry arthritis caused me was my choice of footwear then I'd think myself very lucky - surely people can't disagree with that?

As someone who MORE than understands the difficulties facing people with severe arthritis I wouldn't for a second try to trivialise what people might go through with this disease. Some people might be lucky and literally only have to worry about small things - I'm not having a go at them, in fact I envy them!


Having said that, it does still aggravate me when people say "I know how you feel, after spending 40 years as a carpenter I now have OA in my wrists." With the greatest of respect the situations aren't even remotely comparable. if I didn't have PsA and was able to spend 40+ years doing what I love before suffering a complication as a direct result of doing said action then I have to say I wouldn't mind one bit. (Compared to being hit at 24 and shot down in what are supposed to be your 'prime' years.)

dreamdaisy

We mind that our lives are affected, altered, changed. Everyone on here minds, especially the mums of toddlers who are having to give them these damned-awful meds so that the child can hopefully enjoy their childhood without too much pain etc.

Shoes are a symbol of what has been lost, I was never one for stilettos but now I stand transfixed by shoe displays, wishing and wishing . . . . 'You don't know what you've got 'til it's gone.' is so true and it doesn't matter at what age 'it' goes. It's an affront and an outrage whether you're 5 or 75. What matters is finding another way to live. That's the challenge we face and the first part of rising to that challenge is to accept the new situation and find a way to move on. DD

pepperflo

I had thought that most days I was now coming around to accepting I have RA, but on Monday I had an interview for ESA, and when I started to talk to the lady about my ailments, and how they affect me everyday, the waterworks started again, she actually told me maybe I need to talk to my gp about how low I'm feeling, and maybe seeking help on my accepting that I'm not the private independant person I once was, but this now needing help, everyone knowing my business right down to knicker size kind of person, and I agree with her, when I feel I'm accepting it something else crops up, and I'm back to square one.

stickywicket

I think you’ve probably accepted the basics of your RA, pepperflo, but unfortunately acceptance is an ongoing thing for us as there is always new rubbish to accept. More bits pack in so more stuff has to be given up. We think we’ve got the hang of it but then it bites us somewhere that really hurts. It hurt me to give up playing the piano but my ears couldn’t take the cacophony of wrong notes as my fingers refused to stretch to the right ones.

I think most of the time most of us cope extremely well but, as with any kind of grief (and it is grief) there are moments that take us unawares and unprepared and that’s when it all slams us in the face. I deal with the big stuff by always trying to take on something new and interesting to replace what I’ve had to give up.

This is just a blip. You’ll be fine.

Petitesse

Hi all. I am new to the forum

I have to say I love this thread!
I was diagnosed with ReA 6 years ago. About a year ago my sister asked me how I was feeling emotionally about my illness. If I was mourning? I told her that the first time I have actually had tears in my eyes was when I was thinking about shoes!? :roll:

There are lots of things I worry about. I can't work. I have had to give up my education and now in debt because of students loans I will not be able to pay back. I have to give up my apartment and move back in with my parents until I find a cheap place to rent and get social welfare.
These past 6 years were the time I thought I would meet the man in my life and plan for children. Now I am 41 and have to accept that I will probably never have a child of my own.

The thought of never having children and worries about job and future is just too big to take in.
My sister may have been surprised at my answer as SHE is the shoe-aholic, not me.

I think we all have a 'best version' of ourselves. Everybody have days of looking good, days of looking average, lazy sundays of looking like something the cat dragged in. And then we have the 'best version' we show when there is a party or special occasion.

For me the past years of illness has lead to a life in almost complete isolation. In all this time I have dreamt of getting better, getting a social life again, losing the pounds I have put on and getting fit again and most of all: walking into that room of a party wearing a beautiful dress and high heels. It is the dream of the best version of me.
Looking at my shoes it suddenly sank in that this will always just be a dream.

So the tears over shoes are not because I don't have bigger problems - it is because the other problems are too big and too complex. The shoes are right there in front of me. Very much as a symbol of a more perfect life I will have to give up. A clash between dreams/denial and reality.

I am sure this is why a lot of peoples (womens) 'shoe moment' will be about excactly that - the shoes.

stickywicket

Hello Petitesse and welcome to the forum although, as we say here, I’m sorry you had to join us.

You seem to have lost a great deal in a short time as a result of your RA so I’m guessing it must be very aggressive and you will have had to make lots of changes. What meds are you on and how are they controlling it?

‘Almost complete isolation’ sounds very unusual and not helpful for your wellbeing. I think, if you start a separate thread, lots of people will chip in to suggest ways of making your life more bearable and, indeed, more sociable. Isolation only makes everything worse.

Some of the people on here do manage to hold down jobs and we also have several students. I’m sure they’d all be willing to share their experiences with you. RA doesn’t have to preclude marriage and children – it didn’t with me – but some do choose to remain childless because of the genetic factor.

I hope you will join us permanently as we are a friendly crowd and we do understand arthritis and all the trials and tribulations it brings.

Petitesse

Hi Stickywicket

Thank you for welcoming me. I am sure I will like it here*hugs*

The isolation part is a mix of the illness, financial troubles and being in a foreign country - I think that will solve itself once I get my apartment sold:-) I mentioned it though because it is my situation now and explains perhaps why this 'entry in heels' became such a silly dream for me. This 'entry' would mean being cured and social again.
The social part will, as I said, solve itself soon. The part apart being cured is a little more questionable.

I have reactive arthritis. I have been on tons of different meds, none of them working for me.
I went to physical rehab at a hospital for a month in mid april. Timing couldn't have been better. The first week there I got Remicade for the first time and I felt like I was almost completely cured! I was excersising like crazy and feeling great. But it only worked for 1 1/2 months. It also gave me high liver counts, so now I am off meds until it returns to normal and I can start on Cimzia instead.
I got Arcoxia though, but have allergic reactions, so not taking those now. I only take tramadol until my next visit to the doctor.

I find this to be a very frustrating and strange condition as it doesn't seem to know if it wants to stick with me or not.

By the way: what happened to the first posts?

stickywicket

I’m sorry, petitesse. I misunderstood your first post and assumed it was RA that you had. My very limited understanding of Reactive Arthritis is that it is similar to the auto-immune types but limited timewise. Yours has gone on a long time, hasn’t it? I hope your liver count soon returns to normal and you can start on cimzia. There are one or two people on here who take it. Kathe has just started on it. She has a thread ‘Anyone taking cimzia?’ which is now on page 2. You might find it interesting.

I think I’d find it very hard to have the possibility of total remission ever present but seeming unlikely after so long. I prefer ‘the devil I know’. I have RA and I have it for life so I know where I stand – or, more usually, sit :roll:

The first posts? I was wondering myself. I can only assume that Collywobble, who first put the thread up, has left the forums. I’m basing that on the fact that, when this has happened previously, with other members, their posts are sometimes all deleted. I wish it wasn’t so as it can make a nonsense of some threads.

Petitesse

Thank you for poiting my attention to the Cimzia thread, stickywicket:-) My doctor hasn't given me ANY info about the new meds, so I will be looking here.

Yes, I have the auto-immune variation and in my case it is now considered permanent.

I don't know what to think about that though. I already have bone damage in my ancle and spine because of the inflammation. But a day like today I have felt no pain at all, even though I am off meds and didn't take any painkillers. A week ago I could barely get out of bed.

At my front door I have 2 pairs of 'sticks'. I have my exercise walking sticks - the new bungy version with weight resistance. And I have my crutches. I never really know which pair I will be using.
It looks like there are 2 different people living here. A health/fitness freak and a disabled person. But they are both me...

I am happy that I have great days. But I do understand what you mean by 'the devil you know'. I just have to get used to a rollercoaster life and accepting each day as it is:-)

stickywicket

You'll get great support on here. Just join in on any other threads or start your own. I'm away now until Mon evening. Good luck.

Nicchick

Hi!
I had a quick look through this thread before but have just had a closer look and over the last few days people's reactions to me and my creaky bits have surprised me. After having a flare in my left hip I finally got myself a stick, I had been considering it for a few months as my knees often 'give way' and when my feet are bad I'm pretty slow.

A few months ago a man barged past me on the steps of the bank causing me to descend quicker than I could and oh boy, oh boy...the pain! My father was walking towards me and saw the pain in my face and I burst into tears. He then said that up to that point he would have swapped his ailments (of which has quite a few serious ones) for mine but that he had decided he'd keep his!

Using the stick has made people recoil in horror, ask me 'what have you been up to?' and generally upset them. This is ridiculous as although at the moment my hip is really causing searing pain I'm actually always in pain somewhere or other, as most of us on here are.

I feel that I have accepted my condition but that other people are only now 'seeing it' and blimey....aren't some people selfish?! I was a curtain maker for top interior designers and people were always asking me to 'run up some stuff' for them, not really what I did and I would politely decline. Now I have a shop and teach all that kind of stuff they are always approaching me (I live in a very small town!) and when I still politely decline their offer of work, explaining that I have crippling arthritis and that leaves me unable to do the work I used to do they usually respond with 'where else do I go then?' and give me the 'you don't look disabled' look! I cheerfully stick two misshapen fingers up at anyone who gets huffy because I don't want to use any of my precious energy or hurt myself making their window dressings!

I'm so unprofessional!

I will now go and struggle to straddle my old bike, ride down to my allotment and go and clean out my chickens - I am now the funny girl with the stick, bike and chickens rather than the funny girl on the bike!

Hope that everyone gets through today without too many frustrations, this afternoon I am running a lovely workshop as part of a pamper day for carers. I love my job!

Nic x

stickywicket

It seems to me you've accepted your arthritis pretty well but, of course, the rest of the world is always some way behind us :roll: To be fair, none of us actually understand what it is to live with a chronic disease or illness - any chronic disease or illness - until it hits us personally. And, when you're relatively young, people do expect you to be able to handle steps etc. (I gave up buses in my late 20s after being shoved down the steps, before my joints were ready, once too many times.)

Of course people see a stick and assume you've had an accident. It's a natural reaction. Good for you that you have the bottle to not let that sort of reaction deter you.

I guess, in a shop situation, I can understand the average customer being more concerned about their curtains than your arthritis. I hope there are one or two who manage a few kind words though before heading for the next shop.

I love your 'unprofessional' attitude and I hope you're enjoying the workshop as I type.

Nicchick

Thanks Stickywicket!

Was a superb workshop for some amazing carers who all looked absolutely knackered! They were offered a 30 min massage, magazines, tea, coffee, cake and a little crafty session with me! They all seemed to enjoy it and my ma had a great day too. It's the first time she has seen me have a big flare - the hips seem to be so much worse somehow.
A really nice day and my hip is feeling so much better today, halved the tramadol and have an appointment with my fantastic GP tomorrow.

A much happier Nic x

stickywicket

I'm glad both you and your Mum had a good day. I hope you have an equally good appointment tomorrow with the doc.