Acceptance?

sam36

Hi everyone.
Interesting thread, I don't have this disease, but a dear relative does have it, and I can tell you that this person accepted it from the outset, simply because she has a very positive mind, and believes the pain can be managed, even on those freezing cold wet days, but most importantly she believes a cure will be available sometime in the future.

Sarahd1609

Hi everyone, Ive been fighting this for 3 years now and still can't accept it. Every rheumy appt meant a change to my diagnosis, the most recent being yesterday where they confirmed to me I have lupus on top of everything else. It just seems like just as I'm about to get used to it they throw another curve ball and I back to square 1. I've changed medications so many times and am on that much medication that without a reminder on my phone I struggle to remember what I'm meant to be ordering at the dr this week. I think it's hard to accept something you can't change and others can't see xx

stickywicket

I'm sorry you've had such an uphill struggle, Sarah. There is something about being able to put a specific name to a disease which makes it a little more acceptable because we feel a little more in control of it – whether or not we actually are. The thing to keep in mind, with an autoimmune form of arthritis, is that there are loads of different types but the medication remains more or less the same whatever name we are given for our disease.

Unfortunately, even for some of those whose type of arthritis can be pinpointed immediately, it can be a struggle to find the right medication. We still don't know why some meds work for some people and not others nor why some experience very bad side effects while others have none.

So, it's thought you have lupus. Is this on top of something else or just a change of diagnosis? And, if it's so difficult to remember what to order, is all this medication simply for the arthritis or do you have other medical problems? Your pharmacist might be able to rationalise it all so that you picked up everything together once a month.

Sorry for all the questions. Ignore them if you wish. I'm just trying to get a clear picture.

I think accepting something you can't change eventually becomes second nature. Otherwise our lives would be permanent misery as change is inevitable whether or not we have arthritis. However, having an invisible disease is, without a doubt, difficult and it takes much time and practice to learn how to deal with it and who to tell what to and when.

Might it help to ring up our Helpline people for a chat about it?

Sarahd1609

Hi Stickywicket. Thank you for your reply. I've been diagnosed with PsA, ankylosing spondylitis, osteoporosis, tenosynivitis, hyper mobility and now the lupus on top. I've been on all sorts af arthritis meds, the latest being Enbrel and methotrexate with hydroxychloroquine, but now they are changing me from the Enbrel to ustekinumab to try and tackle the lupus and PsA together. The only problem is that all my meds get prescribed at multi times and the gp won't sync them as they often change.
It just gets so depressing when every time I see rheumy they add another condition, and after 3 years I'm still not in control, which goes against my personality.
Thank you for being there for me tho as I don't like talking about it with my family as it worries them, and they gave enough going on right now with my brothers wedding. Xx

daffy2

Hi Sarah. I'm sorry to hear about your multiple diagnoses, I can see that it must make life difficult for you, especially with all the different medications. I don't know what arrangements you have where you are for getting prescriptions dealt with but I wonder if it would be worth discussing the problem with the pharmacist to see if s/he could help you sort out what to get each time, especially if there is a scheme in place to collect repeat prescriptions for patients who then just need to go and collect their bits from the pharmacy.
When I had to try and make things easier for my late mother(we lived hundreds of miles apart) the local pharmacy was so helpful in liaising with her GP, so all she had to do was go in on the same day each week and collect the blister packs they made up for her.

stickywicket

This is very tough by any standards, Sharon. I presume these are all separate conditions not just , in some cases, changes of diagnosis? I've never heard of anyone having PsA, AS and lupus. No wonder you're struggling.

I agree that we can't burden our families with all the minutiae of our pain and worries but we do have to strike a balance between that and not shutting them out. If only you know how difficult things are, that will be an additional, unnecessary burden for you.

Please remember we are here whenever needed. If you post on the Living With Arthritis forum more people will see your thread.

Sarahd1609

Hi everyone. Thank you for all your comments. I'm slowly getting there. Just waiting to get started on my new meds. I think it was hard to get over another diagnosis to add to the others, but i know I will get there. It's just a struggle balancing stress at the moment, a lot of things are piling up. Guess I need to find ways to lighten my load xx

stickywicket

The trouble is, the disease makes us stressed and stress make the disease, and how we perceive the pain, worse :roll: It's not easy. I think finding ways to lighten your load is a good plan. Some things we can tackle; others we can't. Knowing the difference is a big help.

TheLordFlasheart

stickywicket wrote:

The trouble is, the disease makes us stressed and stress make the disease, and how we perceive the pain, worse :roll: It's not easy. I think finding ways to lighten your load is a good plan. Some things we can tackle; others we can't. Knowing the difference is a big help.

This is what im experiencing quite alot, having a stressful job also is not helpful in trying to manage my OA.

WyleECoyote

Good luck! Threw out my last pair after doing that last year at a dinner at The Traveller's Club in Pall Mall. I managed to survive the evening doing what you suggested and then on the way out realised I was physically unable to walk back down the stairs. My husband had to carry me from the steps to a hastily-called Uber.

Mortifying.

All major acceptance moments I've had with this condition have been related to throwing shoes. I love this 'shoe moment' term!

Scampdog

Love this thread ! I too have had my shoe moments ....having had five operations on my right foot which is now held together by a new bone, nuts, plate, and assorted bolts my daughter announced she was getting married !, I have spent years in trainers as they are the only shoes I can get on (I also wear inserts for dodgy knees) ....I bought the most beautiful outfit it needed heels not too high but had to be done ! I lasted until the Wedding breakfast just !, when my poor feet became so swollen I thought they would explode, but to my delight the photographs look brilliant ! thank goodness it will never happen again

JamesFoote

I have said this before so I don't want to bore people to much, ok past that point already

I have an autoimmune decease
It gave me colitis, I can not describe that pain wow just wow
Then it gave me ARTHRITIS of the spine and neck, so incredibly disabilitating.

It is that time of year again when the cold hits home.
The morphine helps a lot and I have manage to keep to the same dosage for a year now but role on the 14th December when I get my cortisone injections

As for the acceptance well what else can one do. I have bad days only last week my wife had gone to work and I woke up and the pain stopped me moving I just could not get up out of bed and boy did I need a pee luckily I text my wife and she blue and twos it home.
My late wife had a long illness before she passed and I don't know if that has helped me deal with this problem in a funny kind of way. Deal with life the best you can because what will be will be.

Keep smiling every one. At least that is free.

Claudette

I'm struggling hard to accept...not least because my symptoms are so confusing, and despite lots of effort on my part, seeing physios, consultants, nerve block injection into back, I'm in a pain flare up now. My arthritis is only my foot and with rest the pain settles, but walking is painful every step at the moment. I also experience motor weakness in my forefoot and numb toes. After the nerve root injection into my back I was left with just the motor weakness and a poorly positioning foot which led me to believe that my back was the culprit and all I had to do, over time was strengthen the muscles.This was over about a month. 10 toe raises later and my agony began to develop. Now I think I have tendinitis on top of the foot. Using a crutch.
Shoes....?I hate my men's shoes. I still long to wear pretty clothes, to be the nippy, busy person I used to be. I am so excruciatingly lonely and sad with my problem. Feel the need to re-invent myself but don't know how. Before this pain flare I was managing, at best 3 x 10 min walks per day. Anymore and the motor weakness I was experiencing became more and felt detrimental. 2 years ago I was walking 10 miles. My foot became like this after sustaining an injury which happened in one second.
I really need some real positive people who have encountered similar problems and managed to re-adjust. There is no group in Liverpool. If I could find kind people to share with, maybe I could try to get over this. I have lost and excluded friends because people just can't see how this can be affecting my life so much. Maybe I go on about it too much. With the numbness and strange symptoms on top of my midfoot arthritis I have not got closure. I am not sure how "dead" my foot is or whether there is any hope. Trying to keep hoping is what drives you crazy...and I look at people walking about without thinking about it and I feel so, so jealous of what they have.
I've gone on a lot. It is the loneliness and sadness that I feel. I do attend some things in the week such as an anxiety and depression group..but even feel different to them as my anxiety is so situational, unlike theirs which is caused by chemical imbalance.It is not my ideal support group.
Maybe somewhere out there on the arthritis forum someone will have an idea of a support group with whom I could meet on a more regular basis.....or maybe ultimately I have to try to start one in Liverpool myself??

stickywicket

Claudette wrote:

Trying to keep hoping is what drives you crazy...

I think you've hit the nail on the head, Claudette. Of course that depends what we are hoping for. But hoping for something unattainable is exhausting, depressing and utterly pointless.

It sounds as if you are still hoping to somehow regain your lost self – your lost 'Eden' one might say. But you have arthritis. Your foot is damaged. It isn't going to right itself. You will, in all probability, never again walk 10 miles.

Does it really matter what is causing the 'motor weakness' (?) and numb toes? It's there. Docs seem unable to cure it. Anything that docs can't cure we must accept and live with. Not with that negative thing dominating our lives but accepting it as a factor for change in our lives.

Sometimes we change our own lives by the choices we make. Sometimes change is thrust upon us and our task is to adapt and find a way to enjoy being where we have to be. If we say “I shall be happy when........(When my arthritis is less painful? When I can, once again, walk a certain distance? When I can wear pretty shoes?).....then we shall never be happy. First we have to find the happiness of being where we are.

I first realised this when my kids were little. We'd gone to the zoo and, after a very short time, I had to give in, sit down and let my husband and kids enjoy the zoo without me. I was feeling sorry for myself (Having paid to get in I was now watching mere ducks on a pond!) when I began to realise how different people are. How they walked differently, acted differently, reacted differently, talked differently, the funny things they said. (Of course, I was ear-wiggling like mad.) I was so enjoying my 'people watching' that the time passed quickly and I suspect I had at least as good a day out as the rest of them. There is always something to enjoy if we can just make room for it by letting go of our bag of misery.

I'm sure Arthritis Care would be delighted if you were to offer to start a branch for them. I've never actually attended one but I would guess that it's more about doing things than talking about arthritis.

My advice would be to find something that interests you which doesn't require much walking and just enjoy yourself. For me, one thing is cricket. I watch it, listen to it, read about it and used to write about it for a local newspaper. I find cricket infinitely more interesting than arthritis and arthritis never has, and never will stop me enjoying it in different ways. Find your own 'cricket' (It could be a fun search) and just lose yourself in it so that the foot really isn't very important any more.

[Deleted User]

Hello Claudette

We haven't met before so I have read back over some of your previous posts and can see this whole business has hit you really hard.

I have had a quick look at Arthritis Care Support Groups in your area and come up with the following:

https://www.arthritiscare.org.uk/our-services-and-support/branches-and-groups/near:53.4083714;-2.9915726;liverpool

I hope one is near enough for you to visit.

If you haven't already done so a call to our Helpline might be an idea?

0808 800 4050

Keep posting and keep 'talking' on here. It helps.

Take care

Ellen

Claudette

stickywicket wrote:

Claudette wrote:

Trying to keep hoping is what drives you crazy...

I think you've hit the nail on the head, Claudette. Of course that depends what we are hoping for. But hoping for something unattainable is exhausting, depressing and utterly pointless.

It sounds as if you are still hoping to somehow regain your lost self – your lost 'Eden' one might say. But you have arthritis. Your foot is damaged. It isn't going to right itself. You will, in all probability, never again walk 10 miles.

Does it really matter what is causing the 'motor weakness' (?) and numb toes? It's there. Docs seem unable to cure it. Anything that docs can't cure we must accept and live with. Not with that negative thing dominating our lives but accepting it as a factor for change in our lives.

Sometimes we change our own lives by the choices we make. Sometimes change is thrust upon us and our task is to adapt and find a way to enjoy being where we have to be. If we say “I shall be happy when........(When my arthritis is less painful? When I can, once again, walk a certain distance? When I can wear pretty shoes?).....then we shall never be happy. First we have to find the happiness of being where we are.

I first realised this when my kids were little. We'd gone to the zoo and, after a very short time, I had to give in, sit down and let my husband and kids enjoy the zoo without me. I was feeling sorry for myself (Having paid to get in I was now watching mere ducks on a pond!) when I began to realise how different people are. How they walked differently, acted differently, reacted differently, talked differently, the funny things they said. (Of course, I was ear-wiggling like mad.) I was so enjoying my 'people watching' that the time passed quickly and I suspect I had at least as good a day out as the rest of them. There is always something to enjoy if we can just make room for it by letting go of our bag of misery.

I'm sure Arthritis Care would be delighted if you were to offer to start a branch for them. I've never actually attended one but I would guess that it's more about doing things than talking about arthritis.

My advice would be to find something that interests you which doesn't require much walking and just enjoy yourself. For me, one thing is cricket. I watch it, listen to it, read about it and used to write about it for a local newspaper. I find cricket infinitely more interesting than arthritis and arthritis never has, and never will stop me enjoying it in different ways. Find your own 'cricket' (It could be a fun search) and just lose yourself in it so that the foot really isn't very important any more.

Thank you Stickywicket,

This was a lovely reply. Yes I am still struggling to come to terms. I have this almost obsessive need, you see, to try to remain fit. 3 years ago I received a diagnosis for kidney cancer. I was 57. Anyway, after an agonising wait for my op. to have my kidney taken away,6 weeks after the op., the results came back negative...a tumour but not cancer. This hit me hard, especially as some benign tiny things which may or may never develop were found in my remaining kidney(both kidneys actually). When I eventually, after about a year, began to come to terms with my loss, I made the decision to fight back best I could. I decided to remain as fit and healthy as possible(I wasn't unfit)so I endeavoured to walk at least 30 mins every day or cycle or run or swim.The walking was my staple exercise. The reason I became so intent on this regime was because I learned that having one kidney means that once you get high blood pressure it will increase more quickly and begin to destroy that remaining kidney. You see, I thought I had my plan "in the bag" until I injured my foot. I've been back and forth to the GP trying to understand my foot. Due to my upset my BP has been somewhat raised but she said she said I could afford to wait for Blood Pressure meds to see if I get any closure. I'm still unsettled and still no BP meds. Today I only managed to discuss trying some pain meds.with her. I can still swim but I find it boring(still wanting what I can't have) and cycling, as long as it is not too far or streunous doesn't affect too badly...unless it is already bad, like at the moment. My husband is very keen on keeping fit. Doing outdoor stuff together was something we always shared. I can't get my head around that adjustment. I have talked about it with him but the future seems so uncertain. I keep fearing it will draw us apart...particularly as I am so much of a miseryguts at the moment.
Your cricket sounds like it has got your passion. Well done. When I went through my kidney scare I joined a cancer support group where I painted, met lovely people and painted, something I wouldn't normally have got into. The one positive thing this bad time has brought is my learning to play the ukulele and a splinter group of the anxiety and depression group do this together sometimes. It absorbs me and challenges me but sometimes my "downness" gets the better of me and I can't bring myself to play and sing.
Once again, thank you for your nice letter and encouragement. Which newspaper do you do that cricket writing for? My husband is impressed, being sports mad.
Best wishes
Claudette

Claudette

stickywicket wrote:

Claudette wrote:

Trying to keep hoping is what drives you crazy...

Dear Stickywicket,

I'm not sure I have got the hang of replying to private posts. I sent a reply to your encouraging email but wasn't entirely sure where to write my text and do not know if I have simply sent it back to myself, The first time I wrote it directly after your email to me, within the same box.As I can't think of another place I have simply written before your text this time. Tried to phone the helpline to see if I was doing this right but they are busy at the moment.
Thanks
Claudette

I think you've hit the nail on the head, Claudette. Of course that depends what we are hoping for. But hoping for something unattainable is exhausting, depressing and utterly pointless.

It sounds as if you are still hoping to somehow regain your lost self – your lost 'Eden' one might say. But you have arthritis. Your foot is damaged. It isn't going to right itself. You will, in all probability, never again walk 10 miles.

Does it really matter what is causing the 'motor weakness' (?) and numb toes? It's there. Docs seem unable to cure it. Anything that docs can't cure we must accept and live with. Not with that negative thing dominating our lives but accepting it as a factor for change in our lives.

Sometimes we change our own lives by the choices we make. Sometimes change is thrust upon us and our task is to adapt and find a way to enjoy being where we have to be. If we say “I shall be happy when........(When my arthritis is less painful? When I can, once again, walk a certain distance? When I can wear pretty shoes?).....then we shall never be happy. First we have to find the happiness of being where we are.

I first realised this when my kids were little. We'd gone to the zoo and, after a very short time, I had to give in, sit down and let my husband and kids enjoy the zoo without me. I was feeling sorry for myself (Having paid to get in I was now watching mere ducks on a pond!) when I began to realise how different people are. How they walked differently, acted differently, reacted differently, talked differently, the funny things they said. (Of course, I was ear-wiggling like mad.) I was so enjoying my 'people watching' that the time passed quickly and I suspect I had at least as good a day out as the rest of them. There is always something to enjoy if we can just make room for it by letting go of our bag of misery.

I'm sure Arthritis Care would be delighted if you were to offer to start a branch for them. I've never actually attended one but I would guess that it's more about doing things than talking about arthritis.

My advice would be to find something that interests you which doesn't require much walking and just enjoy yourself. For me, one thing is cricket. I watch it, listen to it, read about it and used to write about it for a local newspaper. I find cricket infinitely more interesting than arthritis and arthritis never has, and never will stop me enjoying it in different ways. Find your own 'cricket' (It could be a fun search) and just lose yourself in it so that the foot really isn't very important any more.

Claudette

I have midfoot arthritis caused by an injury 2years ago.I understand that an injury to this area is extremely problematic, not possible to fix. I've tried lots of things, been to lots of therapists. Acceptance is hard because the foot never stabilises. I find myself weighting differently every few days because of numbness or pain. I'm never sure how much to use it, not use it in view of my bio-mechanical problem. It feel detrimental walking on something wrongly because I feel I am setting up the next problem area. I've been attending a physio who will certainly always proceed with caution about any exercise she asks me to do. However, the most simple of things can set it off. I'm out of my mind, not knowing if I am damaging it by doing too much or too little. Orthotics are supposed to help me but sometimes they make me feel worse. I have wasted a ton of money on them too.I feel so hopeless and alone with this.At what point does one feel wiser than any of the physios trying to help you? Today I'm using one crutch. I decided that I'd avoid the pain of what would maybe be called a flare up over the past 10 days and use the crutch for support. If I am getting progressively worse by the weeks how much should I try to assist with walking like this. I currently can sleep pain free and usually my pain subsides with rest. I'm unsure about how to proceed. I don't want my worse situation to come sooner than it needs to.

stickywicket

I'm sorry about your kidney problems. It must have been very distressing to find you had had a kidney removed unnecessarily but perhaps it was one of those things where they can't tell for sure beforehand. Sorry, too, that you are now worried about your other one.

I can understand, to some extent, how you feel. I had breast cancer years ago and they were unable to give me radiotherapy afterwards because my shoulder wouldn't move far enough due to the arthritis. I did feel quite vulnerable for a couple of years.

But that was then. I don't see the point in dwelling on things. It's over. It's never come back. I keep as fit as possible given the arthritis. I eat healthily, don't smoke, take as few meds as possible and then forget about the rest.

Feet? I do understand about feet. My ankles developed RA soon after my hands did. Back then they didn't operate much, if at all, on feet so I now have ankles which have fused themselves and several toes which also have. I have lumps and bumps all over the place and a particularly impressive one under my left foot I have only been able to walk using surgical shoes for about 50 years. Orthotics do help but they have to be proper ones not just bought from a shop. Ask for a referral.

I'm afraid this is a bit short but I've had a very busy day and I'm very tired. I'll just say, before I go, that there's a quote I've given on here before because I think it's very true. It's called 'Cherokee Wisdom'.

An old Cherokee chief was teaching his grandson about life. “A fight is going on inside me,” he said to the boy. “It is a terrible fight and it is between two wolves.

One is EVIL. He is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt, and ego.

The other is GOOD. He is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.

The same fight is going on inside you – and inside every other person, too.”

The grandson thought about it for a minute and then asked his grandfather, “Which wolf will win?”

The old chief simply replied, “The one you feed.”

Airwave!

I wrote a lot in the early forum about acceptance, I'd only fall off the high heels! It has for me, been a on-going thing, my mind has played tricks on me, lulled me into a false sense of my abilities, rebuilt my ego into something I can't sustain and let me come crashing down into low times. But then low times are a normal part of life as are high times and neither are forever.

arther has been on my back for most of my life, I can't remember a time when things were 'normal', its good to see the spirit in the forum newcomers, it reminds us of better times.

Its a grin really!
😐

stickywicket

Hello, how's it going?

I think I might have missed one of your posts. I'd had a long day last Wednesday and my joints were crying out for rest.

I'm not sure what you meant by my 'private posts' and 'emails'. I haven' t sent either, only the ordinary posts on here.

You write “ It feel detrimental walking on something wrongly because I feel I am setting up the next problem area”. This could be true but, equally, not using it could cause just as many different problems. Arthritic life is never perfect. When my feet were at their most painful, my kids were young and it was just a matter of getting through each day and the essentials such as laundry, cooking etc. I didn't think of the future except in terms of getting them to be independent adults which they now are. Rathernice ones too, I think Sometimes we can overthink things.

As for when did I feel wiser than my physio? I've had lots of physios, mainly post-op. The only one I ever felt wiser than was the lazy **** who regularly failed to turn up. When he did turn up he told me I couldn't go home until I could get out of the armchair unaided. I pointed out that it'd be a long wait as I hadn't got out of one so low for over 20 years. All my other physios have been brilliant.

If you can sleep well, that's great.

dreamdaisy

I cannot remember having pain-free sleep but it makes sense, doesn't it? Your joint damage is not so severe that it hurts at night when you are at rest so enjoy it - long may it stay that way.

It cannot be easy when so much of you is pain-free, no wonder you are focussed on the one area that isn't because it must truly stand out. I think you have a long way to go physically, emotionally and psychologically before you are able to begin coming to terms with things, let alone accepting this new reality. OA happens to millions, it's always uninvited and unwanted but, like many things in life, it's something that is never considered as a possibility until it happens. DD

Claudette

stickywicket wrote:

Hello,
I'm not sure what has made me worse. The basic foot physio exercises I did a few times certainly started things off. Now I have non weight bearing ones to do. I've more or less stopped the 3x10 minute walking I was doing. Bought a TENS machine and liked what this did for the pain so tried to switch it on every time I was on my feet. It seemed to enable me to use the muscles better. However 3 or 4 days later now my pain seems worse.Did I walk more than I ought to have done whilst using the TENS? I have lots of sharp nervy pains when I walk. I never know what to do for the best. The GP in our practice with muscoskeletal expertise phoned this morn to ask me to go in and see him. I've never been to him before with my problem. He added that he wasn't sure he'd have any magic cures. I said that I didn't expect that and it would be only like magic if he did! So just going for a chat.

I have so much sharp nervy pain at the moment. The foot exercises seem to be trying to alter the wrong position of my foot, which is either like that purely because I have arthritis or additionally because I have some sort of nerve damage going on. Before the pain flare numb weakness in my forefoot was very disturbing. The nervy pain I feel now could be the arthritis or the foot re-adjustment. Either way, it makes my foot too painful to walk on for longer than 5mins at the moment. Sorry to go on with this description, as if you were a medic. It may help me to more concisely explain to the doc this afternoon. I just hope I don't come away from him feeling more desperate.
My normal GP suggested Gabapentin, the drug for nerve pain. I'm thinking about it, fretting over it, considering it.
Starting tomorrow I am supposed to be involved in 1:1 invigilation with university students with special requirements (such as health problems or dyslexia). This may involve scribing their answers for them or reading out the paper. In itself it is not a problem as it is a sit down role. However, I'm worrying about the picking up of the papers and walking to the venue and returning them. I should like to do it as it makes me feel "normal" and useful. I'll have to see. Not managing to achieve this will also make me feel sad.
Sorry to have gone on again. Just am not coping well at the moment and feeling very lonely with that.

Claudette


Hello, how's it going?

I think I might have missed one of your posts. I'd had a long day last Wednesday and my joints were crying out for rest.

I'm not sure what you meant by my 'private posts' and 'emails'. I haven' t sent either, only the ordinary posts on here.

You write “ It feel detrimental walking on something wrongly because I feel I am setting up the next problem area”. This could be true but, equally, not using it could cause just as many different problems. Arthritic life is never perfect. When my feet were at their most painful, my kids were young and it was just a matter of getting through each day and the essentials such as laundry, cooking etc. I didn't think of the future except in terms of getting them to be independent adults which they now are. Rathernice ones too, I think Sometimes we can overthink things.

As for when did I feel wiser than my physio? I've had lots of physios, mainly post-op. The only one I ever felt wiser than was the lazy **** who regularly failed to turn up. When he did turn up he told me I couldn't go home until I could get out of the armchair unaided. I pointed out that it'd be a long wait as I hadn't got out of one so low for over 20 years. All my other physios have been brilliant.

If you can sleep well, that's great.

Claudette

Claudette wrote:

[quote=stickywicket post_id=643816 time=1526654908 user_id=15071
Hello,
I'm not sure what has made me worse. The basic foot physio exercises I did a few times certainly started things off. Now I have non weight bearing ones to do. I've more or less stopped the 3x10 minute walking I was doing. Bought a TENS machine and liked what this did for the pain so tried to switch it on every time I was on my feet. It seemed to enable me to use the muscles better. However 3 or 4 days later now my pain seems worse.Did I walk more than I ought to have done whilst using the TENS? I have lots of sharp nervy pains when I walk. I never know what to do for the best. The GP in our practice with muscoskeletal expertise phoned this morn to ask me to go in and see him. I've never been to him before with my problem. He added that he wasn't sure he'd have any magic cures. I said that I didn't expect that and it would be only like magic if he did! So just going for a chat.

I have so much sharp nervy pain at the moment. The foot exercises seem to be trying to alter the wrong position of my foot, which is either like that purely because I have arthritis or additionally because I have some sort of nerve damage going on. Before the pain flare numb weakness in my forefoot was very disturbing. The nervy pain I feel now could be the arthritis or the foot re-adjustment. Either way, it makes my foot too painful to walk on for longer than 5mins at the moment. Sorry to go on with this description, as if you were a medic. It may help me to more concisely explain to the doc this afternoon. I just hope I don't come away from him feeling more desperate.
My normal GP suggested Gabapentin, the drug for nerve pain. I'm thinking about it, fretting over it, considering it.
Starting tomorrow I am supposed to be involved in 1:1 invigilation with university students with special requirements (such as health problems or dyslexia). This may involve scribing their answers for them or reading out the paper. In itself it is not a problem as it is a sit down role. However, I'm worrying about the picking up of the papers and walking to the venue and returning them. I should like to do it as it makes me feel "normal" and useful. I'll have to see. Not managing to achieve this will also make me feel sad.
Sorry to have gone on again. Just am not coping well at the moment and feeling very lonely with that.

Claudette

This is my update on that visit to the doctor:
A very nice man who spent time with me.
He told me that I have to come to an acceptance level...which is like the process of grieving - and I knew all that. He also said that my head is too focused upon this pain(and I know this too). He said that if I could lose the focus I could improve the pain(I think I know that too) I asked him how I can do that. I think his answer was that it is just a matter of time. I got the prescription for the nerve pain meds, low dose - Pregabalin instead of Gabapentin. He thought this was better tolerated. Will start on this on Friday.
It was nice that he listened. He also said that my foot pain/ injury is not the absolutely worst thing that could happen to me. Also he told me to buy a wobble board for the strengthening of the ankles...which I have since ordered from Amazon (will have to go slow with that). Also, he told me to buy one of Ruby Wax's books, the one with "Sane" in the title. He said I'd relate to it.
So, nothing has changed. I'm still in pain. I'm still not walking. Talking to people such as him helps to send you on your way. I needed to write down what he said.

Any tips on acceptance that you haven't already offered?
Thanks
Claudette


Hello, how's it going?

I think I might have missed one of your posts. I'd had a long day last Wednesday and my joints were crying out for rest.

I'm not sure what you meant by my 'private posts' and 'emails'. I haven' t sent either, only the ordinary posts on here.

You write “ It feel detrimental walking on something wrongly because I feel I am setting up the next problem area”. This could be true but, equally, not using it could cause just as many different problems. Arthritic life is never perfect. When my feet were at their most painful, my kids were young and it was just a matter of getting through each day and the essentials such as laundry, cooking etc. I didn't think of the future except in terms of getting them to be independent adults which they now are. Rathernice ones too, I think Sometimes we can overthink things.

As for when did I feel wiser than my physio? I've had lots of physios, mainly post-op. The only one I ever felt wiser than was the lazy **** who regularly failed to turn up. When he did turn up he told me I couldn't go home until I could get out of the armchair unaided. I pointed out that it'd be a long wait as I hadn't got out of one so low for over 20 years. All my other physios have been brilliant.

If you can sleep well, that's great.

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stickywicket

That's excellent advice from your doc

I don't actually think you need any more tips from us as we've all told you how we cope and adapt. You now have to find your own way.

You write “So, nothing has changed. I'm still in pain.” The doc can't change anything. Only you can. You have arthritis and, like all of us on here, you will always have pain. What you do about it is up to you. Referring back to my earlier post, you have a choice – a daily choice – of which wolf to feed.

Just one tip. Not about arthritis. When replying to posts there is no need to quote a previous post. Instead of clicking on the blue 'reply with quote' on the right, instead click on the red, slightly lower 'reply' on the left. It makes things much clearer and easier to respond to. Also, a new topic is best put on a new thread. Good luck with everything