Acceptance?

dreamdaisy

You have OA, as a result you will always be in pain. It may worsen when the weather is not so good and ease when it is better but it will not go away. I know it is difficult for you to be positive but nothing will change until you start changing your approach to this situation. As long as you remain focused purely on the pain it will feel far worse than it actually is - distracting your mind enables it to fade into the background but, as you are not willing to take this step, it will remain the dominant force in your life. I remember an exercise I did as part of a group concerning pain management. Firstly we were asked to focus on our painful areas for thirty seconds - we did and how that time lasted - and pain levels increased. We were then asked to focus (for the same length of time) on how we would spend ten thousand pounds - it flew past * and everyone's pain levels dropped because the focus was elsewhere. This was back in my halcyon days of two affected knees but the principle still works: I have around forty affected joints but I still fade the pain by not focusing on it. DD

PS * they set the timer for forty-five seconds

Claudette

Thanks to those who have written to me with words of wisdom. I do still need this forum. Sorry if I have been a pest. Just over two years ago i was a sprightly, fast walking, achieving 58 year old. Now I can't walk fast, it hurts, I use a stick and a TENS machine wired to my foot when I walk. Words from the forum and from my GP have helped me..but as my arthritis came on so suddenly really, I forgive myself for the intense emotions I have felt. I'm tired of feeling bad..and I probably will continue to lapse, particularly when pain feels out of control...but I feel determined to accept and let myself off the hook. This includes dealing with people's reactions who are not aware of the change which has taken place for me (this is one of the hardest ones to deal with as people's reactions to seeing my new disability shock me and make me sad).
Claudette

Airwave!

If you think you have reached thd stage of 'acceptance' then you most certainly haven't, it is a constantly changing format and will go up and down as your illness and emotions do.


What is it with women and shoes? 😂😂😂

stickywicket

I think we all need these forums. It's good to have somewhere to go where no long, boring explanations are necessary because people understand far better than they would wish.

Unfortunately, it really doesn't matter what you, or any of us, could do two years ago. That was then: this is now. The ones I feel really sorry for are the parents of the toddlers or young children. Not only do they face a future full of uncertainty but they have to feed their babies steroids and other nasties. I think the youngest child we had on here was 18 months old. How does one deal with that?

Believe me, we all 'lapse' when the pain is really bad and looking to stay that way. A quick dip in the pool of self-pity isn't a problem: a daily workout there is

No-one, without arthritis, understands. Just as we who have it don't understand the difficulties faced by someone who has Multiple Sclerosis, Muscular Dystrophy and a whole host of other diseases. In time, we learn to answer questions briefly but factually, giving people only as much information as they want. Most don't want much. No-one wants to be round an arthritis bore. But it's pointless to pretend we can do things that we patently can't. When I was in a 'Young Arthritics' group, one member wrote a book called 'Arthritis, at your Age? because we all got heartily sick of being asked precisely that question. The best people to be around are the ones who will laugh with you at the disease. A dear friend, seeing me coming downstairs backwards, once commented "I never know whether you're coming or going." It all helps. Taking it too seriously doesn't.

Claudette

Thanks Stickywicket,

Yes, I come down the stairs backwards too.

Been doing invigilation for 1:1 for university students with extra needs today and yesterday, needs which could be physical, mental or both(as if the two weren't entwined anyway!). This is my 3rd year doing this. The hardest part has been the 15 minute walk either way to the room. I really wanted to do it. Didn't want to let it beat me. Wearing TENS machine on foot when walk and taking my stick. The doctor said the pain when walking would be OK...but my midfoot looks thicker this eve...and then I start worrying that the damage is escalating fast.
Today the student had to stand to write because of various disc problems in her back. She told me she was also depressed and that her 9 year old son had her up in the night fretting. She thinks he's maybe on the autistic spectrum. Other people with other problems. I see I am not alone. The consultants had told her there was nothing which could be done with her back.
I keep trying to think about the link with negative emotion and pain, which the GP told me about. It is a vicious cycle...especially when you don't understand your own body's reactions and what best to do. More invigilations to follow this week and next. I'm hoping I can bear up. Same room at a distance.
You sound proud of your children, Stickywicket. Adversity for you probably makes them kinder and more thoughtful people. I also love my son and feel proud of him. He's 23 and away at university...and getting a wise head on as he grows up. When I worsened this year I was very scared when he came home for him to see me. He has been lovely and full of wise words...but I never want my problem to become his...but keeping things under wraps means it comes out a bit messily. Thank God he has his own life and his own passions.
Take care
Claudette

stickywicket

You've done very well so far The foot might, indeed, swell a bit and protest but arthritis can't have everything its own way. Keep up the good work.

Understanding one's body's reactions? My body is a complete mystery to me. Sometimes body and mind are in harmony: sometimes locked in battle. That's life.

We all want to (a)be proud of our children and (b)protect them from our disease(s). The latter doesn't mean pretending all is OK. Just not letting it impact on them more than it has to.

Claudette

You are wise Stickywicket,

Thanks for you encouragement. Today went on my bike to my invigilation work. It took a lot of planning..including electrodes for the TENS machine at the ready for when I got off the other end. Today my walk was only short. Still need the TENS and the Co-codamol. The cycle was long and I allowed an hour each way. My foot isn't affected in the same way on the bike. It is all flared up though. A change has happened, which I suppose could reverse.... Before this pain episode, of about 2 weeks, my foot had a tendency to feel like it was on a slant, complete with numb toes. ..that is a slant from inside to outside. It has been like this for ages and may be my body's way of keeping the weight off the advanced arthritis joint midfoot over my high arch. Now the slant seems not there, at the moment but there is lots of pulling and jarring going on, making each step painful. It feel really painful each step. I have this thing in my head going on...like have I made it worse...and this foot doesn't want to do this. The only thing that has made me continue with walking etc is that it tends to settle with rest. Bag of peas on it now. I never know what to do with my foot and no-one can tell me because no-one feels the things I'm feeling(or analysing!)
Yes, I have to do as much as I want to do as I can...like the cycling...which would have been fine had I not spent the return trip worrying about the foot.
The wobble board I ordered has arrived. Will have to go at it tentatively Still waiting for the book. Also ordered another book by someone called Cam Taylor who's blog I found online. I was googling things around acceptance. He was badly injured in a motorbike accident and has multiple surgeries over the last few years. It makes me feel less alone to read about others who have coped with a relatively sudden disability.
Our son will be home briefly this weekend. I look forward to that. The weather is set to be nice which makes people in a better mood, even if it doesn't always reach me.
I thought about the possibility of buying a fold up bike today. Decathlon has one for £139. Then I could drive my car nearer to places like town and use the cycle for getting about. Have to think about this...just searching, searching for possible solutions. I feel quite imprisoned by my feet.

Take care
Enjoy your bank hol weekend

Claudette

It's me again,

Today I think I'm about to cancel my afternoon 1:1 invigilation work. It pains me greatly to do this. I feel defeated, sad, with a negative eye to my future...but my foot, after 3 more intense days of activity feel to be increasingly worse. I didn't want to cancel(although they'll easily find a grateful substitute) but I'm inflaming this foot more and more. I think it settles to become less painful if I give it some rest (maybe not this time...who knows?).
Claudette

stickywicket

Again, you did well to get there and do it. And to ice any subsequent inflammation. I hope you'll manage again today but sometimes our joints need a rest.

Try not to worry about what might or might not be happening. It will happen anyway and, if you don't use the foot, muscles will atrophy and deterioration will happen more quickly as there will be no muscular support.

I know nothing about cycles or cycling except that it is largely regarded as good for arthritis. I'm wondering if some pedals might be more suitable than others for you. I'm guessing that something which supported the whole foot would be better but I do emphasise I'm a complete ignoramus on that front. A folding cycle that would fit in your car boot does sound like a good idea though. Do you have a specialist cycle shop which could advise? A non-arthritic-but-very-tall friend got one sort of part custom made.

Do you take anti-inflammatories? Sorry if I've forgotten.

I hope you'll have a lovely weekend with your son.

Claudette

Hi Stickywicket,

Anti inflammatoties?...sadly no, because of my one kidney and reduced kidney function. Also some other meds have to be lower doses for me(if I take them at all).
Today I woke to a near paralysed foot, stiff, painful, numb. It pained me psychologically to do it but I phoned in to say I couldn't do the invigilation this afternoon. I also cancelled Tuesday morn, which means I'll just have the afternoon that day. I know now that this was the right thing to do. I know I am within a bad flare up and I just cant't push it at the moment. Also, I know that part of my pain, possibly a large part is nerve pain(and numbness) caused probably by the arthritis. I met a fellow arthritis sufferer this afternoon and she also suffers from both. My pain is sharp and makes me wince and avoid bending the foot (around my ankle at the moment)The more I walk the worse it gets. I'm doing myself no favours. It needs to calm down(Me too!!) Strangely enough I put on a pair of shoes I have with a slight wedge this eve to go out and things felt calmer. It is strange how flare up times actually can teach you something.
Went to an anxiety and depression group followed by my ukulele group, which was a nice distraction and walking was limited. Nice people also with lots of health issues making them depressed, like me. It was soothing.
I was supposed to embark upon as low dose of Pregabalin tonight for nerve pain and anxiety, given me by the doctor. I didn't do a lot of googling about it. However 2 of the people at the group told me about it's bad reputation and it's problematic, addictive qualities..told me to be wary. Since then I looked at some press reports. One was the Independent. Not so good. It is making me "hold fire". The report says the addiction thing makes it very difficult to get off.Also, one of the early side affects is sleep disruption and sleep is my one precious thing.
Hope you have a lovely weekend, with your nice children perhaps?
Our son just texted. We are only getting him for an evening!! Oh well, anything is better than nothing!

Love from Claudette

stickywicket

Ah yes. Many of us can't take anti-inflamms for various reasons. As for pregabalin, all pain meds are subject to abuse. For most people being prescribed them for pain, the problem is not of addiction but toleration ie more and more are needed to get the same effect. Careful monitoring is the answer. People on here seem to take pregabalin about 4 hours before bedtime as that way they are alert in the morning. I got the distinct impression that they didn't so much prevent sleep as prevent waking up alertness I guess it depends on how many, and when, you take them. All pain meds are a choice.

Have you heard of the Ukelele Orchestra of Great Britain? They produce some fun stuff.

Enjoy your weekend and your son's company. I'll be having another manic one with one of mine and family.

Claudette

Dear Stickywicket,

Hope you had a nice weekend in the sunshine with some quality friends/family time. It was really lovely to see our son, just an overnight stay - one evening and one morning. Anticipating his arrival I managed to spend some time out on my feet in a shopping area. When he left I felt bad again -pain was bad and mood to match. Just to prove the psychological connection.

I haven't yet taken the Pregabalin. I contacted a "Pain group" which I have discovered locally and I hope to try to go along. I mentioned the Pregabalin to her in my email. She said most of the group are on it...either that or Gabapentin. She said she really thought I ought to take it, said she was on the highest dose but has now had to make the descision to add in another - Amytriptiline, the other nerve pain med....I immediately wondered/ worried if this was about the tolerance thing. If you keep needing more in order to feel ok, is it a good idea to start in the first place?...It leaves me in a quandry. If I couldn't sleep because of pain I suppose I would have no option.

I was fully prepared to cancel my remaining work(2 more afternoons) but have worked out a way, this morning, to do a one way cycle to the campus, use the bike whilst there and then make a short downhill journey to the train station and then take a train ride home, followed by a short level journey back to the house. It's extremely complicated but I think the psychological gains may be worth it along with what it does for my heart! The alternative is phoning to cancel, feeling bad in myself about that and trying to think of something else to occupy my lonely time.

Thanks for reading my messages. It helps me to feel less isolated. Helps a little getting things off my chest.

Best wishes
Claudette
Claudette

stickywicket

I'm glad you enjoyed time with your son. For us it's never long enough: for them probably too long until they have kids of their own. Suddenly they realise we are actually quite interesting people and our ideas aren't so ridiculous after all

Extra use of arthritic joints usually results in payback. The question is - is it worth it? I think it sounds as if this was. Of course pain makes us miserable hence the usefulness of distraction. Post-op I've found I can delay pain relief by up to two hours just by distracting myself with a book, crossword or sudoku puzzles, a TV programme, computer games etc etc.

I think I'd prefer the advice of a medical professional (which I presume your 'pain group lady' is) rather than that of people who are anxious to start with. However, I think you have a very valid point. If you can manage without, why start? I've never refused post-op morphine but my key to pain meds is to reduce as soon as possible. That way, when things get bad, I'm starting from the same low dose as before not from one I've gone up to and never reduced from.

I love your plan for getting to work The plan itself is an achievement and you will deservedly feel very good about yourself after doing it. OK, there may be more payback but it will, hopefully, have been worth it. You will justifiably feel pleased with yourself and, as you say, the exercise itself is good both physically and emotionally.

dreamdaisy

I rarely pay any attention to what people tell me about meds and their (or even better a friend of a friend's) experience of them. Their troubles are not the same as mine, their psychological make up is not the same as mine, their experience is of no relevance to mine just as mine is of no relevance to them.

I am aware that there is a potential for addiction with cocodamol but that's true of anything upon which one becomes reliant for whatever reasons - alcohol, tobacco, chocolate, cheese, shopping, the list goes on. In my early days I flirted with morphine and, surprise surprise, the pain did not go away so to me it was common sense to get used to it, develop my tolerance and get on with things in a clear-headed fashion rather than with marshmallowed thought processes courtesy of morphine. I routinely allow six to eight hours to pass before taking another dose of the cocos but I guess I am lucky in that I am years ahead of you in dealing with this malarkey.

For what it's worth I think you are doing well at the moment in trying to divert your attention away from your pain but try not to get too involved with other depressed people because they will only pull you down and may not be able to show enough interest in you and your problem. Try the meds because they are there to help but be disciplined in how you use them. Doing lovely things usually results in extra pain but if you know you have something on the horizon prepare for it by resting to build your reserves, maybe up the pain relief by an extra dose for a couple of days, then rest after thinking only of the happy memories, not the payback. I'm in a spot of bother at the moment after a wonderful lunch out but the food was superb and the bother will both ease and pass because it always does. DD

Claudette

Thanks DD,
I've not started the Pregabalin. I'm hanging fire while things evolve. Not any worse today after my cycle ride yesterday. Sleep is always(or nearly always) preciously nice until I have to get up in the morning and face a day on my feet. I do get up at a reasonable time...even though I detest that starting of the day. I feel safe when I'm in book in bed at the other end of it. Am just going to see how things go re the meds at the moment but I am popping the codene and paracetemol on average, about once a day, none today though. Will have to see.
Claudette

Claudette

Thank you Stickywicket,
Hanging fire with the Pregabalin. The Pain meds lady is actually just part of a pain group which has been set up independently I think. I'm not sure if any of them have expertise or just experience. I probably won't get to meet with them tomorrow for their twice monthly meeting because, weather permitting, I'll do my cycle thing to my last invigilation...as psychologically this is the most useful for me. If it rains though I can't take my bike so I will probably cancel. Decided *less is more" with the walking at the moment. I want to just do enough not to get into such a terrible pain flare again....but actually not sure what did the flsre, that or the additional foot physiotherapy I was doing....or maybe it was partially my head which stressed with the necessity of walking with those exam papers to administer someone's exam, an exam which is very important to them. The pressure of getting that right I mean(no pressure for someone else but pressure to me who thinks walking is my big hurdle). Anyway, yes, I'm sure everybody's head and what's in it has a lot to do with the perception of pain..and in the case of walking the anticipation of pain surely doesn't help.

Hope you are alright and having some happy times. Yes, you can't hold your children back.They have to do what they want to do. Only that way do they actually want to return.

Best wishes
Claudette

stickywicket

I hope the weather was kind to you and you managed to do your cycling. Here it's dull but, with luck, will get my washing dry.

I'd be trying to find out more about the pain group. One that's directed by a medical professional could be a very good thing but one in which people get together informally to talk about pain sounds like my worst nightmare

Claudette

Hi Stickywicket,

Yes, I don't know what to expect with the pain group. I won't get to go for a couple of weeks now...but I will give it a try. I loved the Pain Management course (4 weeks long!) 20 years ago, held at the hospital. I was suffering what appeared to be an undiagnosable pain which went on for a few years. I now think that it was, in part, stemming from my lower back. It continually, except during my sleeping hours, irritated my bladder. I largely "moved on" from that by going back to work as a part time supply teacher. There's nothing like teaching to give you absolutely no time to think. The pain management course featured medication, gentle exercise but mainly talked about the power of the mind and "closing the pain gate". Although it didn't work for me right away it sowed the seeds of thought in my brain.I do overthink everything and I am convinced that my fear of my pain and the overthinking of the future makes everything worse. However, within this course, the most useful thing was being with others also in pain, many undiagnosed like myself. This did have professionals facilitating every session though. At no time was the group left to run itself.

Today I managed my work and cycle but off the bike and even walking with the bike I had plenty of pain even with some codene pain meds. This made me feel down again and hopeless. my pain flare seems to continue at the moment...but I have to keep on going and doing. It can't "have me"....and neither can the fear about what's going on.

Tomorrow I've got a lunch time group, then Ukulele group, then my appointment with the psychotherapist I've been seeing privately. Then my husband and I will go out for our "tea". Less stress, less pressure.

We had no rain today even though it was threatened. Thank God...or I would have arrived like a drowned rat. Think we are getting it tomorrow.

Thank you for keeping in touch. I acknowledge I am lonely. This doesn't help when you are feeling frightened.

Best wishes
Claudette x

stickywicket

Well done, once more, on getting to work The pain is largely irrelevant. You have arthritis therefore you have pain. It will always be so. Best not think about it, just distract yourself, take painkillers when necessary and enjoy life

And it sounds as if you will today. Lunch with friends, ukelele group then a meal out with your husband. What's not to like m0150

Marcia

I don't like the idea that I have to accept that I won't be able to wear heels again. I got rid of all my heels and found that I.was wearing slacks and jeans a lot even to church because I could not find a pair of heels to fit me or was comfortable enough to wear. The shoes were either too long, too wide, too big too small, uncomfortable, frumpy looking all sorts and I would go home sulking:)
One day I went into Matalan and I came across a pair of shoes I really liked. I was hoping they would have my size and that the heel would not be too high and that I will bring able to walk into.them
Then hey pressto they fit, heel was a good height and they were comfortable.
Hotters do alright shoes but they are too expensive, but they do sell supportive shoes which has arches in them. I think as long as I can get wide fitting and my biggest foot is comfortable in the shoe I'm ok.
I have decided I am dmakung myself depressed by kerping the shoes at home that csuse me pain.
So I gave my shoes to SCOPE Charity and I felt good when I left the shop. So now I treated myself to a dress and skirt that will go nicely with the shoes I purchased. It did hurt but I was determine to start a fresh with new clothing anfor mix and match.

stickywicket

That sounds like two good results, Marcia. One for you and one for SCOPE

daffy2

You have hit on an important point Marcia in recognising that keeping the 'wrong' shoes was a negative thing. Better to move on. It's easier to smile and enjoy your day if your feet aren't giving you grief!

Airwave!

You will find that the new Pain Management Therapy course are ++ compared with years ago, medical knowledge is leaping ahead and they are well worthwhile attending with many benefits.

Remember that acceptance of our condition does not include acceptance that we have to put up with discomfort. That, we can do something about.

Marcia

Hi all
After my operation and the Dr's assistant said that I vould wear my shoes I.was so happy, only to notice that I could not get my feet into my shoes.
I was not happy at all about that. Every shoeI I tried on could not fit me. I was so sad about this. This went on for a while, I then tried my shoes on again because I notice the swelling was going down. Eventually I gave my shoes to charity alongside with clothes and sent some home to the Caribbean.
I decided to embrace the new style shoes I will be wearing although I was not really one for very high heels. Now the shoes I.have got look great on.my feet, roomy, comfortable and the right height for me. I thought it would be wearing trainers and very very low heel for a very very long time. But nope I found two sandals in time for summer under the price of £20 whic I.am very please with and I love them both as I mix and match with my clothes.
Some what I'm saying is that once that courage of departing with.the shoes arises it's not all as bad as it seems.

stickywicket

A good outcome, Marcia, and helpful for others to know that these things aren't always as bad as they seem at first and can, indeed, work out well.