No More Arthur - Train My Mind

elainebadknee

Hi

This may sound daft to post on here but here goes, sure someone will tell me if so...lol!...
Since age of 18 I had my osteochondritis dissecans and as lots know finally had my TKR last October. Now the thing I have difficulty getting my head round and its probably my mindset is I no longer suffer from OCD. I keep telling myself to talk about it in the past and not present tense, but I still think of me as still having it...Its crazy isn't it and I should be happy now I am rid of the monster...It means I no longer have any excuses any more, I'm cured ABRACADABRA!!!! I think its gonna take a while to get my few brain cells round this...

Not much hope is there?

Elainexx

maria09

Hi Elaine
You've had this since you were 18 it will take a long time to get your head round it!
Also you will be getting aches and pains from your new knee
Be kind to yourself and take it a day at a time
Best wishes
Maria

elainebadknee

Maria

But people who had cancer don't still think of themselves as having it once in remission do they? I think my mind is playing silly beggars....I do still get aches and pains which I now know is after I exercise, it don't like being pushed...

Elainexx

maria09 wrote:

Hi Elaine
You've had this since you were 18 it will take a long time to get your head round it!
Also you will be getting aches and pains from your new knee
Be kind to yourself and take it a day at a time
Best wishes
Maria

barbara12

Elaine it doesn't sound daft...you have lived with this thing for so long..your brain thinks its still there....suppose it will take a while to re tune it..I keep thinking when I have my hips done surely I will not stop limping just like that ... :? hopefully it wont be long before you can put it to the back of your mind xx

villier

Of course it's going to take a while for your mind to work out whats what after that length of time, I would imagine it would be similar to someone losing a limb getting used to it not being there and the phantom pains, you are cerainly not daft, but you have just shot yourself in the foot by saying you have no excuses anymore .............Marie xx

elainebadknee

Marie

of course I am according to Atos!!! How are you getting on with your appeal...Ive been without money now for over 3 weeks cant see CAB till saturday!

Elainexx

villier wrote:

Of course it's going to take a while for your mind to work out whats what after that length of time, I would imagine it would be similar to someone losing a limb getting used to it not being there and the phantom pains, you are cerainly not daft, but you have just shot yourself in the foot by saying you have no excuses anymore .............Marie xx

elainebadknee

Barbara

I have not got my limp now it does a bit when my leg still gets tired but most of time its not there...I do expect to be able to walk further but that's not happening yet...

Elainex

barbara12 wrote:

Elaine it doesn't sound daft...you have lived with this thing for so long..your brain thinks its still there....suppose it will take a while to re tune it..I keep thinking when I have my hips done surely I will not stop limping just like that ... :? hopefully it wont be long before you can put it to the back of your mind xx

Mat48

To me it sounds very like the way amputees feel when they can feel the missing limb as really still there and want to scratch it. I relate to this post strongly for some reason. I grew up with terrible eczema all over me and then it went away completely a few years ago. But here's the thing. I have to try and get over certain habitual horrors - of soap and chlorinated water and of wool of all types and of normal non medicated shampoo. I have to consciously think "I like these things now" to myself. And with the onset of RA I genuinely do love hot water and swimming and I need warm wooly jumpers because I'm often very cold now and I can use paint without fear as an artist. But these things are so habitually ingrained that I still have to force myself to use them even though they actually help me now. I still look at cats and start scratching and check my head for bald patches daily.

My brother in law has been profoundly deaf from birth and he now has a cochlea implant. He has to see a psychologist and learn the meaning of sounds in order to make any sense of them at all. It's fascinating and I think he's so brave but it's very hard work for him mentally and physically. It sounds as if you are in a similar boat to me.

And now I have RA instead of the eczema I find I sometimes actually miss the visibility of disease because I don't trust this pain or the drugs and feel they are all wrong or the work of my overactive imagination. All these things just mess with our head - we are complex beings. I've just decided to come off the RA meds for this reason - because I cannot accept that I have RA at all.

So go easy on yourself and let your mind slowly catch up with your body - it may take a while but it will get there in the end - as hopefully will I. Mat x

barry2013

I had no idea you had problems since 18 you are not daft, but you now have the rest of your life to look forward to, I wish you all the best and keep up with the exercise it will get better :P

villier

That's a shame about your money Elaine mine's was sorted out very quickly, at least they will have to back date it, I got a phone call from a woman from the appeals department the other day to see if I had any changes since the assessment, I told her I am now seeing a rheumatologist and going to see a neuropsychologist and told her the ins an outs, I mentioned the letters I sent from my GP and neurologist, surprise, surprise she hasn't seen them, she said she would go and look for them as she wasn't back in till Thusday and wanted to get my appeal sorted out, five minutes later she phoned me back to ask if I could send some more copies straight to her as what she was indicating, god knows where they would be under a mountain of correspondance, so, what does that tell us that we all know, if I hadn't mentioned the letters I would have been none the wiser, I got more copies and sent them recorded delivery, it will be interesting to see what happens now, my neurologist has told them straight that I am not fit to work at any level, looks as if I could be hearing soon will keep you up to date when I know, hope you get your money sorted soon..........Marie x

elainebadknee

Hi Mat

Do i sound like the amputees? To me that's doing them a dis-service if you get what I mean? My new knee gives less pain but today tried to walk to the garage for eggs and I start of reasonably well but by the end my dad was saying to me "your'e getting slower and slower" and I was, plus it was clunking, clicking and stiff as hell all the time...Its a really strange feeling which nobody else gets...

Elainexx

Mat48 wrote:

To me it sounds very like the way amputees feel when they can feel the missing limb as really still there and want to scratch it. I relate to this post strongly for some reason. I grew up with terrible eczema all over me and then it went away completely a few years ago. But here's the thing. I have to try and get over certain habitual horrors - of soap and chlorinated water and of wool of all types and of normal non medicated shampoo. I have to consciously think "I like these things now" to myself. And with the onset of RA I genuinely do love hot water and swimming and I need warm wooly jumpers because I'm often very cold now and I can use paint without fear as an artist. But these things are so habitually ingrained that I still have to force myself to use them even though they actually help me now. I still look at cats and start scratching and check my head for bald patches daily.

My brother in law has been profoundly deaf from birth and he now has a cochlea implant. He has to see a psychologist and learn the meaning of sounds in order to make any sense of them at all. It's fascinating and I think he's so brave but it's very hard work for him mentally and physically. It sounds as if you are in a similar boat to me.

And now I have RA instead of the eczema I find I sometimes actually miss the visibility of disease because I don't trust this pain or the drugs and feel they are all wrong or the work of my overactive imagination. All these things just mess with our head - we are complex beings. I've just decided to come off the RA meds for this reason - because I cannot accept that I have RA at all.

So go easy on yourself and let your mind slowly catch up with your body - it may take a while but it will get there in the end - as hopefully will I. Mat x

elainebadknee

Hi Unsure

Im not so sure if it should be elainestiffknee!

Elainexx

Unsure wrote:

I'm glad it's worked out for you.

Perhaps you should change your user nae to Elainegoodknee to help it along.

elainebadknee

Barry

Yes in my teens my knee clicked away lots and thought it was growing pains etc then went to consultant and he told me i had a piece of loose body in my knee about the size of a 50p! After that followed many more loose body removals in my twenties and thirties ceasing late thirties!
It always complains when I go swimming or gym!

Elainexx

barry2013 wrote:

I had no idea you had problems since 18 you are not daft, but you now have the rest of your life to look forward to, I wish you all the best and keep up with the exercise it will get better :P

elainebadknee

Marie

It has been a series of hold ups for me the main one being our local CAB c closed to have to make 12mile round trip to another one, sometimes they can't see you for a whole week all the time my money is stopped...Its been one thing after another getting pretty fed up...
Thats terrible about your appeal and them losing the paperwork, they ought to open mail, scan it save it and then they would have copies? Just another example of how inefficient the DWP/ATOS are im afraid...

Elainexx

quote="villier"]That's a shame about your money Elaine mine's was sorted out very quickly, at least they will have to back date it, I got a phone call from a woman from the appeals department the other day to see if I had any changes since the assessment, I told her I am now seeing a rheumatologist and going to see a neuropsychologist and told her the ins an outs, I mentioned the letters I sent from my GP and neurologist, surprise, surprise she hasn't seen them, she said she would go and look for them as she wasn't back in till Thusday and wanted to get my appeal sorted out, five minutes later she phoned me back to ask if I could send some more copies straight to her as what she was indicating, god knows where they would be under a mountain of correspondance, so, what does that tell us that we all know, if I hadn't mentioned the letters I would have been none the wiser, I got more copies and sent them recorded delivery, it will be interesting to see what happens now, my neurologist has told them straight that I am not fit to work at any level, looks as if I could be hearing soon will keep you up to date when I know, hope you get your money sorted soon..........Marie x[/quote]

Mat48

To me it sounds very like the way amputees feel when they can feel the missing limb as really still there and want to scratch it.

I meant that our brains are very complicated things really in the way we receive signals re pain and other stuff. Not comparing you to an amputee or to a man who has a cochlea implant come to that - but just saying that perhaps having a new knee joint is making it tricky for the brain having to accommodate this new experience. Hard to know what's what isn't it?

Hope things resolve for you soon. Mat x

elainebadknee

Mat

Yeah I know its a mindset but it is puzzling me, stupid thing!

Elainexx

Mat48 wrote:

To me it sounds very like the way amputees feel when they can feel the missing limb as really still there and want to scratch it.

I meant that our brains are very complicated things really in the way we receive signals re pain and other stuff. Not comparing you to an amputee or to a man who has a cochlea implant come to that - but just saying that perhaps having a new knee joint is making it tricky for the brain having to accommodate this new experience. Hard to know what's what isn't it?

Hope things resolve for you soon. Mat x

nearlybionic

Hi Elaine
I can understand where you are coming from. When I had my 1st THR I felt a bit of a fraud even posting on here as I thought "my arthritis is gone now" . But I then thought, I have experience and advice to pass on to someone going through similar situations. Anyway, I have OA in my back, neck and other hip now so it didn`t last!!
For me though, I kept wondering if I still have bilateral hip dysplasia if one of my hips is now false? It will take time for you to come to terms with your new knee and I am not talking about the physical there.
I think what you are feeling is normal so don`t be hard on yourself x
NB

Helenbothknees

nearlybionic,
I felt - and still feel sometimes - the same way. I have new knees and so don't have arthritis any more. I was going to leave this site; then I thought if anyone else came on here who was going to have both knees replaced together, they'd probably feel as alone as I did, since so few people have bilateral TKRs. So I came back, and I still post, and hopefully I have something to offer....even if only to mythical people who might some day have two knees done. Sorry to hear you have OA in other places now too; I live in dread of that, and keep hoping my odd aches and pains are just that, and merely the result of getting older.

maria09

Hi everyone
Just because you have new knee or new hip and your arthritis has gone doesn't mean you have to leave this site
It's like a family here and we with Arthur don't think you should leave well I don't we all have lots to offer each other and you have your experiences with surgery and your new joint
It's great your Arthur has gone but don't feel guilty about it
There is always someone on here who will need your advice
Also most of us have Atos issues so should stick together so keep posting
Maria

elainebadknee

Hi NB

Yes we can offer tips and words of comfort and encouragement to each other...Its silly for me its like I've been used to carrying round the OCD with me all my life and now I don't have it any more....Its all healing well but it still feels strange as in very stiff and mechanical some days..

Elainexx

nearlybionic wrote:

Hi Elaine
I can understand where you are coming from. When I had my 1st THR I felt a bit of a fraud even posting on here as I thought "my arthritis is gone now" . But I then thought, I have experience and advice to pass on to someone going through similar situations. Anyway, I have OA in my back, neck and other hip now so it didn`t last!!
For me though, I kept wondering if I still have bilateral hip dysplasia if one of my hips is now false? It will take time for you to come to terms with your new knee and I am not talking about the physical there.
I think what you are feeling is normal so don`t be hard on yourself x
NB

elainebadknee

Hi Helen

Yes I feel like a bit of a fraud but then I think hang on if I live till im 80 then for half of my life I will have had OCD with me so when think about it like that I can reason it but now when people see me parking in blue badge places they are thinking im sure "why is she parking there, has she borrowed a relative's car?"....

Elainexx

Helenbothknees wrote:

nearlybionic,
I felt - and still feel sometimes - the same way. I have new knees and so don't have arthritis any more. I was going to leave this site; then I thought if anyone else came on here who was going to have both knees replaced together, they'd probably feel as alone as I did, since so few people have bilateral TKRs. So I came back, and I still post, and hopefully I have something to offer....even if only to mythical people who might some day have two knees done. Sorry to hear you have OA in other places now too; I live in dread of that, and keep hoping my odd aches and pains are just that, and merely the result of getting older.

elainebadknee

Hi Maria

You are right the forum has lots of spectrums to it I mean sometimes we all get a bit crabbit and sometimes we have a laugh but overall this is a good place to be...ATOS well i think we ought to have a qualificiation in it to undertake the medical, but hang on the so called healthcare professionals don't do they? Just wondered could an auxiliary nurse be a HCP? I bet the answer is yes..

Elainexx

maria09 wrote:

Hi everyone
Just because you have new knee or new hip and your arthritis has gone doesn't mean you have to leave this site
It's like a family here and we with Arthur don't think you should leave well I don't we all have lots to offer each other and you have your experiences with surgery and your new joint
It's great your Arthur has gone but don't feel guilty about it
There is always someone on here who will need your advice
Also most of us have Atos issues so should stick together so keep posting
Maria

maria09

Hi Elaine
HCAs or auxiliary nurses are not used I think as they do not have the qualified nurse does
Guess what???????????
Lost my appeal surprise surprise!!! It's now in the hands of tribunal service
So watch this space!!!!
Maria

elainebadknee

Maria

You lost your appeal or have you asked them to look at the decision again? What in god's name is this idiotic system coming to when the same company medically retire you then refuse you in the within a short period of time?

Ludicrous and I know I stand no chance too...But Im having a go...!!

Keep yer chin up..

Elainexx

maria09 wrote:

Hi Elaine
HCAs or auxiliary nurses are not used I think as they do not have the qualified nurse does
Guess what???????????
Lost my appeal surprise surprise!!! It's now in the hands of tribunal service
So watch this space!!!!
Maria

villier

maria09 wrote:

Hi Elaine
HCAs or auxiliary nurses are not used I think as they do not have the qualified nurse does
Guess what???????????
Lost my appeal surprise surprise!!! It's now in the hands of tribunal service
So watch this space!!!!
Maria

Sorry to hear you have lost your appeal Maria you will have to get the boxing gloves on now, I think I will find out shortly about mine, good luck...........Marie xx