Acceptance - it's not just about us, is it?

Ladybrown

Hi all
I've been away for a while (rough summer because my father-in-law had a stroke which was hard to deal with. He seems to be making a good recovery but he is not a good patient so we are still supporting my mother-in-law a lot).

As some of you will remember, I am fortunate enough not to have an inflammatory arthritis, just OA in the knees (although being 41 and 'end stage' in both is less than ideal). Having been through the mill with the GP last year, I got sent to the persistent pain team, who sent me to a physio, who sent me back to the surgeon and so onto a second arthroscopy (on the other 'good' knee this time - turns out it's not good any more). The consultant has told me that there is nothing else to be done, other than bilateral TKR, and that it is now a matter of me deciding when I can no longer cope - he was very clear that he had gathered as much evidence for me as possible as he is concerned about the NHS situation in the future. Happily, he also decided to contact the awful GP who basically told me to 'man up' and give up my job last year, saying he would 'put him straight'.

Anyway, onto the question I have been musing - when is the right time? I don't want to wait until I'm forced out of work because there's a good chance I will be able to get a good 15 years out of new knees and pay off the mortgage. I considered a few parameters and spoke to my OH about it, to be surprised by his answer that 'It's not just you that needs to be considered'. I feel terrible that I haven't even thought too much about his needs in this situation - he gets so angry and upset at my situation and says he is frustrated about being my chauffeur and carer and watching me work, eat, sleep, repeat when there is something which can be done. I guess and exhausted, pained, drugged wife isn't much fun.

I hadn't really considered how much we need other people to accept our situation too - friends and colleagues look crestfallen when they ask if the surgery has 'fixed' the problem and I have to tell them that there isn't really a fix as such.

Any advice would be much appreciated
Fay
x

PS sorry for the long message - my OH has a broken laptop and I have been struggling to get onto mine as a result!

stickywicket

Hello again! It's lovely to see you again.

I'm probably not the best person to reply to this but, for what it's worth, I'd no problem deciding when was the right time for my TKRs. Yesterday would have been good I was struggling to walk at all and had been unable to do paid work for about 10 years. However, I have RA and the other joints complicated matters.

I do think, though, from reading on this forum, that, for most people, the decision as to when to have them can be complicated and personal and so only the individual can decide.

You are quite right, though, that arthritis affects every member of the household and your OH's thoughts and feelings must form part of your decision-making as what you do or don't do will also affect him very much albeit in different ways. I've been very fortunate, with all my ops, to have either my Mum, or latterly my husband, able to be around to help afterwards. I'm sure the lack of pressure to 'get well soon' aided my recovery enormously and helped the new joints to 'bed in' and continue to work so well for so many years.

Before ops, Mr SW has had to do all sorts of things for me including getting me to the loo and helping to dress / undress me. He didn't complain but, given the chance of freedom from all his caring duties, I'm sure he'd have jumped at it.

If you have a choice as to when it happens...indeed, if you have an offer of an op, decide between you, given all the relevant factors, whether or not to accept. I hope you'll both subsequently fell it was the right decision.

barbara12

I remember asking this question when having hip pain, but was told you will know when the time is right..strange thing is I didnt ..but had an appointment with my consultant, and he said shall we go ahead, and I just nodded..was I glad , or I think I would still be struggling on..my back stops me for making a full recovery,but I haven't regretted having these hips replaced..and you are right we depend on people and have to think of them..wishing you well with everything ..

frogmorton

Oh Fay poor you

I think your husband's response might be as much to do with his worry about his parents as about your arthritis.

It sounds to me at though your consultant would like you to go ahead with the operation???

He worries about the NHS in the future - a hint it might not be so easy to get such ops in future??

YOU want to be able to work for sometime to come and

don't want to loose your job through ill-health.

You are in BIG pain

and husband sounds exhausted and maybe frustrated??

I think you maybe know what you want to do....? but this can only really be your decision.

We will be here for you whatever you decide ((())).

Love

Toni xxx

dreamdaisy

I can't help on the knee replacement front because I'm still enjoying the activities and benefits of my rotted originals but I hope our experience of Living with Arthritis may be of some help.

My first arthritis began just before we married in 1997 so he has been beside me for every creaky step of the way. Come 2000 I was already opting out of various activities because I couldn't do them but still encouraged him to take part because he could - and I still do. I was / am fortunate in some ways because good health has always eluded me so I am used to coping, and he respected the fact that I attended rheumatology and orthopaedics because his father had both RA and OA and never did a thing about it (which made both his parents' lives harder than it needed to be, also, possibly, a generation thing).

I still struggle with the concept that my health is our problem, I regard it solely as mine which upsets him and is selfish of me because it also affects him. I know he has felt great levels of frustration in the past because he cannot do anything to make my life better but he is a clot: he's been making it better for years and I keep telling him so. He cooks every weekend and Bank Holiday, over the years we have established a code phrase so he knows to 'up' his input which he does without complaint. He launders, irons, cleans and shops for groceries without one word of censure. Most importantly he still makes me laugh on a daily basis and I still feel stupidly proud when I make him laugh.

In the early days we confused we thought 'cured' was the only option but have come to realise, over the years, that getting on better with life stuff is what matters. I have what I have, it isn't going to go away and will get worse but I am still me; I have always been more than my health and always will be. I recently bought a scooter and we went for a walk in the park: for the first time since 2002 we held hands, a wonderful moment. DD

Ladybrown

Thanks all. It's a relief to be back with you all again (and I'm going to hoard my laptop until OH caves in and replaces his!)

From speaking to my consultant, I think I can probably manage for another 2 or 3 years, provided the degradation doesn't speed up - using sticks and braces, lots of rest, oodles of dullers and taking things slowly. Luckily I was able to get a promotion as an advanced practitioner so my teaching commitment is only 70% of full-time and my manager is hoping to reduce it a bit more - I know I can't be in the classroom full-time any more and luckily have no days this year where I have to teach all the sessions. I know that working is speeding up the damage but we need my wages to pay the mortgage. At least I don't have to do the cleaning!

Unfortunately I think my OH wants me to look at TKR sooner than that. I will make sure I do it before I am unable to work (and at least as a teacher I can hopefully request surgery in May, after the exams, so that the impact at work is reduced). I've realised that my mood and energy levels aren't good (at risk of TMI that's not exactly good for our marriage in some pretty specific ways) so I have booked an appointment with the GP and maybe that will help matters. If I am a happier wife, he might be able to accept a few more years as well.

Thanks for being there and helping me think out loud
xx

frogmorton

That sounds like a plan Fay.

Your husband's Dad can get a bit better and his Mum won't need him so much by then hopefully. This should mean you can take time off of family commitments as well as work

With a little extra shuffling about by the boss at work, maybe a little help from the GP you can hopefully go on a little longer there to help pay the mortgage.

Education is the perfect job for operations too as you won't be needed until September will you.

You must keep in touch with us all now you have reconnected

Love

Toni xx

daffy2

Thanks for being there and helping me think out loud

That's the good thing about the Forum isn't it? Having our thoughts stuck on a hamster wheel inside our head is not only tiring, it also does nothing to lift the spirits, and ultimately doesn't achieve anything anyway much of the time. Getting them out of the head and into the light of day - or others' perspectives - can be a way of moving forwards rather than round and round.
Has your other half been able to address any emotional difficulties re his father's stroke? Intimations of mortality are frightening and chaps are not always very good at dealing with such situations...