Acceptance?

stickywicket

Psychkez, I'm so sorry you're feeling really down right now but don't be too hard on yourself. You call it self pity: I call it shock. It must seem as if your future has been snatched away from you and that the downward trend will continue unremittingly. Of course you feel sad and frightened. You stand to lose so much.

But....

I've had RA for 50 years. In that time I've got a degree, got married, raised two strapping sons & now have an adorable grandson. I've also accumulated 2 new hips and 3 new knees (Just call me Jake the Peg) and there's been a fair bit of pain, both physical and emotional, a lot of heart searching, a lot of doors slamming shut and then lovely windows opening.

You're right to call it a journey. It's a tough one, no doubt about that but with help - and you'll find plenty of that here - and a willingness to adapt to change you'll find it not all bad. Your OH wants you to be cured. Of course. So does mine. He still wants to drag me to the hospital for every little thing that goes wrong. (Although he's never that keen to go when it's him) He'll have his own journey. You'll need to help each other.

And don't assume that because you can't kick a ball around with the kids now, you'll never do it again. I have my ball-kicking periods and my non-ball-kicking periods. I'm pretty rubbish at the best of times but, if your kids are like mine, they'll get as much pleasure out of that as they would if you were Ronaldo Mk2.

Stick around here & talk to us. We want to help.

dreamdaisy

There is nothing wrong with self-pity (though I agree with sticky, it's shock hon, pure and simple). Arthritis lacks the drama and glamour of the more dramatic diseases, but hell, I reckon it causes more destruction to more people in one go than all the others put together. They try, but arthritis is remorseless in a way that they are not. I must stress that that is a personal view.

It takes time. A deal of time. I suspect you will find yourself on a roller-coaster of emotion that you had no idea existed. It is a huge shift of perspective on life, on love, on being a wife and a mum, on being you (whoever the hell she was, the 'you' you knew has gone, yes? Who the hell is this new version?) Fifteen years in and I still wonder what happened, and why. But nowhere near as much as I used to. DD

psychkez

Thanks again for your support. Well i finally got my first specialist appointment and am now officially suffering with psoriatic arthritis. He decided to give me a steroid injection in my knee as well as taking lots of bloods and xrays. He says that he feels they have caught it quite early and that in time he thinks it can be controlled but this could take months maybe years. So i am now back on the steroids and am seeing the nurse tomorrow to start on the methotrexate. Anyone else using this? Whats it like?
All in all im still crying a lot and still scared of my future. I just hope the doc is right and that there is some hope ahead for me even if it doesnt feel like it right now. The meds scare me too. So my future consists of meds, bloods, xrays, and plenty of ups and downs im sure. I just hope i am as strong as you all appear to be. xxx

dreamdaisy

Quite a few of us are on meth, with varying degrees of success/side effects. I have had both the tablet form and the injected (I do my own jabs every week) and can truthfully say two things: I am rarely troubled by side effects and it's done sweet FA for my PA - mind you I had five years of a crappy GP telling me that my fat left knee would sort itself out - some doc, she did not spot a case of inflammatory arthritis and some patient, I flaming well believed her, so I am firmly of the opinion that whatever meds I have had have been given far too late to do anything: the earlier you start this stuff the greater chance you have of it slowing the progression of the disease and thus limiting the future damage to your joints.

My hospital now has a policy of not letting anyone go much longer than six months on meth before then considering them for the next stage of treatment, an anti TNF or a biologic. I waited for over four years before I had a shot at those, again far too little and far too late. If they have caught you early enough then you stand a very good chance of reacting well to the meth: be conscientious about getting your blood tests done, these are important as monitoring you is all part and parcel of the treatment. You should be given a purple booklet in wich your blood results will be recorded, you keep that on you at all times. Don't scare yourself witless by reading about it on tinterweb, ask us questions and we will do our best to help. I have to go to work now, feel free to PM me with any questions you might have. DD

dreamdaisy

I didn't bump it up, psychkez did, this is the thread to which she returned. I felt I should answer, having been there, done that with the meth and the rest! DD

psyart

I have just read this ~ bin away with cornish faries so no hope for me

but I have PA & recently diagnosed with fiybromyalgia ~ have had PA for 5 :?: years now ~ but still find it hard to accept at times. Mainly cause our lives do change and for me 'arthur' has got worst each year and now with fiybro things are taking its toll on me. I am not a person who wants to feel self pity or down ~ my life has had many down turns but I have always managed to find a way to climb upwards. But this is different ~ no matter what meds I have been taking ~ the pain or the side effects to certain meds are eating away at my sole. My OH doesnt understand ~ but wont listen when I try to explain. There have been major changes in my life recently that have happened because of 'arthur' and I am in trouble coping with them. I am not one for coming on here very often ~ i feel i should be able to sort things as i have before ~ this is a failing in my part as everyone of here are so suportive but everyone is the person they are :!:

is there a right or wrong way in our decisions ~:?: we can only do what we think is right for ourselves :!: right now my view is that i need to leave my OH of 22years as i cant cope with his lack of support or williness to 'learn' how to support me

sorry ~ i seem to have gone on here :!:

anyway ~ take care everyone ~ new to here or anyone i know :!: cotton wool hugs to everyone :!:

louise xxxx

lindalegs

psyart wrote:

I have just read this ~ bin away with cornish faries so no hope for me .....................is there a right or wrong way in our decisions ~:?: we can only do what we think is right for ourselves :!: right now my view is that i need to leave my OH of 22years as i cant cope with his lack of support or williness to 'learn' how to support me

sorry ~ i seem to have gone on here :!:

anyway ~ take care everyone ~ new to here or anyone i know :!: cotton wool hugs to everyone :!:

louise xxxx

Hi Louise,

I'm so sorry you're having trouble coping at the moment. Have you tried ringing the Helpline at the top of the page? You could then talk about how you feel and this might help you more than you could ever imagine.

Sending you gentle hugs and empathy ((((( )))))

Love

stickywicket

psyart wrote:

I am not one for coming on here very often ~ i feel i should be able to sort things as i have before ~ this is a failing in my part

Oh no, Psyart. I couldn't disagree more. No man (or woman) is an island etc and there is absoluitely no shame in consultation.

I'm so sorry you're having problems with your OH. Arthritis does that. It messes up far more than the joints and it certainly affects the whole household in one way or another. Men are strange creatures and very often see emotional issues as women's problems. I'm sure he's suffering too in his own way. Getting him to open up is another matter.

Linda's quite right. The Helpline people may well be able to do something for you. They are all too aware that arthritis is not just a physical thing. Why not try them?

Ankyspond

Hi all,

What a great way of looking at acceptance of this, I unfortunately am not there yet :oops:. I do find it encouraging that a lot of you have accepted "Arthur", I have not and have a daily fight with him in every thing I do. I know I should know better, I know it's very negative and I know the energy I am wasting is pointless but can't help it.

I only wish I knew how and when I was going to accept this, you all seem so strong and have it together where I am in pieces most days and emotional. I feel embarrassed reading your posts when I have been diagnosed for four years and tried many meds and have one part partially under control (although not sure how long for) but pain in other areas horrendous. Think one thing is how people thing there is nothing wrong with me as I push myself to do everything.

Oh well very interesting and encouraging reading your posts, I just wait for the day, thing, person, tip, object that help me to reach the stage of acceptance!
:P :P :P

lindalegs

Ankyspond wrote:

Hi all,

What a great way of looking at acceptance of this, I unfortunately am not there yet :oops:. I do find it encouraging that a lot of you have accepted "Arthur", I have not and have a daily fight with him in every thing I do. I know I should know better, I know it's very negative and I know the energy I am wasting is pointless but can't help it.

Oh well very interesting and encouraging reading your posts, I just wait for the day, thing, person, tip, object that help me to reach the stage of acceptance!
:P :P :P

Hi Anky,

May I say that on reading your post I think that part of you has accepted arthur, if you hadn't then you wouldn't be fighting him. It is an emotional journey you're on as pain is so very wearing and you're having to adjust your life because of it.

In my experience I will say that it does get better than this and as you're a fighter you're half way there already.

Every battle you win with arthur, no matter how small, means that one day you'll win the war.

Hope this helps.

stickywicket

Ankyspond wrote:

you all seem so strong and have it together where I am in pieces most days and emotional.

There you have it in a nutshell, Ankyspond. We seem ‘strong’ and ‘together’ but we, too, have our ‘in bits’ days. I had one yesterday. Lots of little bits which had to be gently reassembled by others. Hence the value of this forum.

Life with arthritis is a constant series of acceptances. I think to fight against it is by far a healthier option rather than just meekly giving in. But sometimes we have to concede that, to do (A) is just plain silly because it will inevitably mean not doing (B) or (C). I still find these choices incredibly difficult at times but it’s a question of focusing on what we really want.

It’s all much harder when you actually look OK. I don’t. I look as if I’ve had arthritis for most of my life which is true. When I looked OK I felt more of a compulsion to act OK, partly because I felt I’d be judged as just plain lazy if I didn’t, partly because it was so much easier to fool myself – until payback day.

If you’ve only been diagnosed 4 years, Ankyspond, you’re just an apprentice still. Stick with us and keep talking to us. You’re doing fine.

Ankyspond

:roll:

Hi both i am am overwhelmed with your kind words and support.

Lindalegs, you have made me stop and think that maybe I have accepted it partially as you say I do fight it everyday, although sometimes fighting can make it worse.   I have adjusted my life as much as I can, you know the drill oxo grip stuff, handrails, matress, automatic car and you are right the emotions are so hard to deal with but I suppose thats something we all face on bad days.  I  know I am not the only one feeling like this and knowing that there are people like you taking the time to reply to me makes me very grateful.  x x

Sticky wicket, thank you for your honesty I just seem to be having more bad days than good at the minute and know it's not right wallowing in self pity. I do understand what you are saying giving in is not acceptable we have to fight it but it's a very thin line as the consequences are often pain and more pain which puts us back to square one. For me it's the things what seem so insignificant to other people like wearing heels (yes I am female, he he) struggling with wash basket, shopping you know what I mean I am sure lots of others know what I mean.  I try hard to be normal I have three kids (teenagers) and teach in secondary school three days a week as well as normal housework, as you say cos I mask it well people think there is nothing wrong with me and then I push myself harder. 

I do feel lucky that I m not as bad as some people and my heart goes out to each and every person with this awful disease.  Thank you so much for your positive comments and support it really means a lot to me. I am sorry to moan I don't want to come across as a martyr.

I will always fight 'arthur' he may win the odd battle but will never win the war.  :P

dreamdaisy

I think that life with arthritis becomes a series of compromises. I cannot see the point in fighting against the diagnosis and taking the meds (as so many do) because it won't go away no matter how much of an ostrich one becomes, get your head down and get on with it is my approach BUT it isn't easy. Not once have I asked 'Why me?' because there is only one answer, 'Why not?' but I do rail from time to time against the changes that this dross has forced upon me, who in their right mind wouldn't?

There is nothing wrong with an occasional dip into the POSP - pool of self-pity. It helps every now and again, it's balm for the afflicted one. What that must NOT become is a habit, that gets the afflicted one (and those around them) nowhere. The depredations that this disease (in all its form) can wreak upon one are frightening in some respects, but humans are adaptable, there is stuff out there to help, life can still be lived albeit differently to how we might want. OK, the shoes might not be so glamorous anymore, but the make-up can be, the nails can be, the jewellery can be, the flash of cleavage can be, the clothes can be, I do occasionally thank whoever I am a female arthritic - the boys don't have those things to fall back on (well, perhaps at the week-end! )

Sticky put it beautifully (but then she always does) in that line about being in lots of tiny pieces that had to be gently re-assembled. Over the years I have found that the people around you are more willing to help with the re-assembly if one is not a permanent puddle of self-pitying tears and bleats, but on here it is absolutely fine to bleat 'cos we all know what it is like. And we will help with the re-assembly. DD

suzygirl

Just popped in today and to read the last few posts has really encouraged me. It is so helpful to hear people spell out how it is for them, as you can identify with it.

Sticky I had payback today for pushing myself in the heat, cos I look ok. Yet I should know better by now.

Thank you all x

psyart

stickywicket & lindalegs ~ thank you for your kind words. Ringing the help line has been sugested before but I dont know why I dont ring them. Everyone on here who has rung them has had positive remarks. I must think about this very strongly.

My OH is not willing to talk ~ this is the biggest problem. He says he dosnt understand but wont sit down and listen to what I need to tell him. I have pleaded with him to come to the hospital next month so he can hear what the consultant has to say. the consultant is brill ~ same one as Cris goes to ~ he listens and asks sensible questions. But OH refused to go ~ so what do I do :?: I feel like I am hitting a brick wall.

He makes me feel that he is embarressd to walk with me and my walking stick ~ he always walks in front ~ sometimes leaving me behind. Or he says "do you really need your stick?" Yes I do ~ I woudnt use it if i didnt.

Yes I think he is worried but I am at my wits end on how to get out of this hole.

Anyway ~ thank you again. Loads cotton wool hugs coming your way ~ and over to anyone who wants them.

louise xxxx

stickywicket

Ankyspond - you do NOT come across as a martyr, a moaner or one who wallows in self-pity. You come across as someone's who is trying hard to deal with this cr8ppy disease but, like the rest of us, finding it tough at times.

50 years on, I still don't find it easy to tell my nearest & dearest when I'm in a bad spot although I know, without a shadow of doubt, I should do for all our sakes.

If your children are teenagers it might be best to be as honest as possible with them. (This doesn't have to come under the heading of 'moaning'.) Just tell them the facts and enlist their help. I know my two are more caring individuals as a result of what they had to do for me.

Psyart - this is a real tough one. It does sound as if he doesn't want to know. Maybe he's really scared and trying to pretend it's not happening. Hell's bells, we arthritics do that, let alone our OHs! Have you a mutual (maybe male) friend who could have a word with him over a pint?

lindalegs

psyart wrote:

stickywicket & lindalegs ~ thank you for your kind words. Ringing the help line has been sugested before but I dont know why I dont ring them. Everyone on here who has rung them has had positive remarks. I must think about this very strongly.

My OH is not willing to talk ~ this is the biggest problem. He says he dosnt understand but wont sit down and listen to what I need to tell him. I have pleaded with him to come to the hospital next month so he can hear what the consultant has to say. the consultant is brill ~ same one as Cris goes to ~ he listens and asks sensible questions. But OH refused to go ~ so what do I do :?: I feel like I am hitting a brick wall.

He makes me feel that he is embarressd to walk with me and my walking stick ~ he always walks in front ~ sometimes leaving me behind. Or he says "do you really need your stick?" Yes I do ~ I woudnt use it if i didnt.

Yes I think he is worried but I am at my wits end on how to get out of this hole.

Anyway ~ thank you again. Loads cotton wool hugs coming your way ~ and over to anyone who wants them.

louise xxxx

Hi Louise,

Stop thinking about ringing the Helpline DO IT! I know you'll be really glad you did.

As for OH you need to either trip him up with your stick next time he's walking in front or beat him about the head with it :shock:

Seriously your OH needs to talk to someone else (not you) where he can be brutally honest about how he feels because he has a lot of issues going on that he has to air. He sounds quite angry to me and probably doesn't want to hurt you. At the moment he's causing more damage to you and your relationship by not sorting how he feels. Is there anyone he'd be willing to talk to?

stickywicket

Better do as Legs says, Psyart. She's a formidable lady. You wouldn't want to know her when she's roused. And she's getting there.

Ankyspond

Again I am overwhelmed by the support and honest, lovely comments being written on here. It is so nice to share my thoughts and feeling with others who don’t judge and to know that you all feel the same and are facing the same things. Thank you to each and every one of you for your comments I hope I can be of some help to someone as well one day.

DD: The things you said made so much sense it is a compromise, although I do take the meds because without them I could not work or lead the life I lead now and that would finish me off. I understand there is no cure but if anything can help me with my quality of life then bring it on! I was once told things like this are sent to the strong people, that comment might be true but unfair. I loved the way you talked about the shoes but can still use the make up, nails, jewellery, cleavage and clothes again a fantastic way to look at it and what I needed to see it from a different perspective. I hope that I am on the way to re-assembling myself and will try with all the kind words and support you have shown me. x

Psyart: I have no right to comment really as I have never spoken to you before but I would suggest you phone the help line any help you can get is worth it. Your OH needs to speak to someone, they are obviously having trouble dealing with it as much as you are and need to talk to someone maybe frustrated cos can’t help or feel guilty. I do know the most important thing is to surround yourself with a good support network, I wish you well and hope you get your problems sorted. X

Stickywicket: Thank you so much for your kind words I worry sometimes being negative is not fair on anyone reading this. You are right I am trying to deal with it but having such a crap time at the minute its hard work to be the happy outgoing person I really want to be and like people to see. Wow 50 years you have been suffering that is incredible (and very sad), thank you for your honesty about telling your nearest and dearest I am the same, although my husband is fantastic and wants to help I still feel he doesn’t quite understand it really. My children are great and will help and support me a lot but have to be bit careful because last year our daughter (14 at the time) broke down about what the future holds for me and her, took her to speak to my consultant and the OT and they were great. I know you know as I do there is a fine line between kids helping out and becoming ‘young carers’, I teach in a secondary school and see this a lot and it breaks my heart. But again thanks for your honesty and kind words.

stickywicket

Ankyspond, we are all negative at times and, if being negative on here enables us to be more positive with our nearest and dearest, I’m all for that.

I had to smile at the bit about your husband. I don’t think they ever really do understand – it is, after all, a very complicated disease to comprehend. He’ll get better at it(!) but I guess they have their problems too, trying to fathom us out. I try to be as honest as possible these days, without being ‘moany’, though I don’t always practice what I preach. I currently have a 30 yr old TKR which I think is giving up the ghost. I’m trying not to let Mr SW know the full extent of the pain before our weekend with our son & his family as I don’t want it to get in the way of anyone’s enjoyment. However, he’s guessed much of it!

As for the kids – oh no, not little carers. I was rather pleased to have two sons as I thought they’d be less inclined to stay and look after Mum than daughters. (I was right. Neither of them live in England! Great holidays though.) I just meant little things like “My knee/shoulder/wrists’s playing up a bit. Would you put the washing out/pop to the supermarket/lay the table.” I think that, as adults, my arthritis has resulted in them being quite instinctively aware when someone needs a helping hand. (But they’re absolute maniacs when pushing a wheelchair!)

stickywicket

Ankyspond, we are all negative at times and, if being negative on here enables us to be more positive with our nearest and dearest, I’m all for that.

I had to smile at the bit about your husband. I don’t think they ever really do understand – it is, after all, a very complicated disease to comprehend. He’ll get better at it(!) but I guess they have their problems too, trying to fathom us out. I try to be as honest as possible these days, without being ‘moany’, though I don’t always practice what I preach. I currently have a 30 yr old TKR which I think is giving up the ghost. I’m trying not to let Mr SW know the full extent of the pain before our weekend with our son & his family as I don’t want it to get in the way of anyone’s enjoyment. However, he’s guessed much of it!

As for the kids – oh no, not little carers. I was rather pleased to have two sons as I thought they’d be less inclined to stay and look after Mum than daughters. (I was right. Neither of them live in England! Great holidays though.) I just meant little things like “My knee/shoulder/wrists’s playing up a bit. Would you put the washing out/pop to the supermarket/lay the table.” I think that, as adults, my arthritis has resulted in them being quite instinctively aware when someone needs a helping hand. (But they’re absolute maniacs when pushing a wheelchair!)

Ankyspond

Hi,

Thanks for the support, I know we are all negative at times but having bad time at minute and know I am being too negative and need to break the cycle which you know is hard.

Although my husband tries hard to understand I sometimes feel he thinks if we don't talk about it then it may go away or not be as bad, I know this 'Ostrich' approach is common and I suppose his way of dealing with it. What people forget is the effect it has on all the family not just the person with Athritis as you know. Having said that my husband dose his best and without having it I don't think anyone really knows what your going through. Our kids are fantastic and will always help, my daughter is very thoughtful even down to yesterday we were talking about going on holiday and she said "mum can't go anywhere hot because of her medication", not supposed to be in sun with Anti TNF!

It always seems to be the comments from people that knock me back, I have been quite proud of myself lately as I think I hide my disease well and carry on as normal as I can. I was talking to our nieghbour last night and he said (not nasty) that he can see how bad I am getting when he sees me getting in and out of the car, knocked me sideways a bit to be honest.

I am so sorry to hear that your TKR is not working as it should, I hope that can be sorted again for you. I am sure Mr SW is quite aware of what is going on, I know you will get the support you need from him maybe he feels the same about getting the weekend out of the way first. Will you be able to get it done again?

Have a fantastic weekend with the family, love family time, such a special precious time to be cherished. Our eldest is at Uni in Aberdeen and he just gone back missing him already but he happy and healthy so thats all that counts.

Speak soon. xx

stickywicket

Bumping this up for cornishman.

dreamdaisy

Bumped up for SBaldrick. DD

sulkycat

Thank you for bumping this - am reading it bit by bit and digesting it.

I think I am still at 'battling the b*gger' stage (I didn't bother with the why me bit, not a lot of point). Grrr to it.

I found it hard to alter how I dress etc - can't do buttons or buckles so a lot of my gothy clothes don't get worn. I was delighted when I managed to get a pair of black tights on and could wear skirts again! Rings and bracelets don't get worn anymore, but I have many necklaces and earrings.
I had my very long hair cut off so it's easier to style and wash now, that was tough - but it's still bright pink, I refuse to compromise on that!

Sounds trivial, but so long as I can still do my face and eyeliner with bad hands if I need to leave the house then there's still plenty of 'me' left.