Spouses of Sufferers

deoknight

Hi All,

After sharing my ‘hello’ I suggested that it might be good for these forums to have a discussion thread for partners, lovers and spouses of arthritis sufferers. Thankfully some of the more experienced bloggers here thought this was a good idea. Therefore here it is “Spouses of Sufferers”

I’ll go first with my story. Remember you’re not alone folks.

—————————

My wife was diagnosed with seronegative inflammatory arthritis in 2011. This initially manifested itself as swelling and pain in just her left knee. Eventually this subsided but then flared up in her left hip. By 2018 shortly after the birth of our son she had to have the hip replaced. She was in her early thirties and on maternity leave when she got her new metal hip.

Most of the years between 2011 and 2018 were fine, with only minor flare ups now and then. However the degradation of her left hip really took hold after she came off contraception when we were trying to conceive. Late 2016 to mid 2018 we some of the hardest years of our lives. Obviously having our son has massively enriched our lives but battling the uphill slope of arthritis was extremely hard for her. This was compounded with having to deal with extreme morning sickness and then obstetric cholestasis which risked the life of our unborn son.

Whist she was suffering physically, I was suffering mentally. Between summer 2017 and summer 2018 I had moderate depression. I found it very hard to the see the positives in life.

The hip operation, although initially a scary prospect, was a new lease of life for my wife and by extension me and our son.

The social restrictions we have all faced with the coronavirus pandemic has reawakened some of my depressive thoughts. This has only be exacerbated by my wife recently experiencing her first flare up in her right hip.

I reach out to you all as a form of catharsis but also to say to other spouses of sufferers you are not alone. Arthritis can cast a pretty long shadow and it even reaches a sufferers significant others. Try to see the light that is your love.

Airwave!

My OH says she hasn’t got enough sympathy for 24/7 , I can understand this but do get fed up with being asked why I’m not doing more in the house, garden or whatever else needs do8ng. I suggested moving to a bungalow with small garden on a flat level that was greeted with a definitive rebuttal, oh well.

I don’t blame her I’m not sure I would feel any better about dealing with me for getting on for fifty years, I’m not even sure I wouldn’t have reacted poorly to having constant empathy poured over me, I prefer life as it is, at least it’s a constant?

its a grin, honest!

frogmorton

My husband has been brilliant absolutely wonderful.....he copes with it all just sucks it up including me and my arthritis and then from 2014 on our youngest getting leukaemia. 2 and a half years chemo for her. 10 months almost solid in-patient - he visited daily. Even on days when he was also travelling to scotland for work.

Then another year and a half when she had to have surgery on her hip and shoulder to sort out chemo and steroid damage.

Partners (those who stick around and love us) are truly WONDERFUL🙂

Thank you @deoknight for starting this thread.

Mike1

My cat is lovely!

deoknight

https://community.versusarthritis.org/discussion/comment/672002#Comment_672002

Thanks for sharing @Airwave! Being that other half I can understand the moments when you wonder why they aren’t doing more. It can be so hard to understand the difficulty and importantly how these days suddenly appear. When you good days you can almost forget. The bad days become all the more stark.

Instead of the house move have you considered modifications to your current house? This website has lots on that.

Keep talking to each other. It does help.

deoknight

https://community.versusarthritis.org/discussion/comment/672010#Comment_672010

@frogmorton your husband sounds like a hero. I’m sure he’d be very pleased to hear you say so publicly.

I hope you and your child are doing well.

Lilymary

My husband is mostly pretty stoic about how my arthritis has limited our shared interests, particularly fell walking, which he now does with a mate. Sometimes I think he prefers it that way anyway, even when fit I did slow him down.

But it is frustrating for me when he doesn't realise the reason I haven't made his 9pm cup of tea, or some other minor transgression like asking him to pass something over to me from the other side of the room, is due to the fact that at that particular moment in time I'm nailed to the sofa either by pain or exhaustion. I realise he can't always tell when I'm having a bad day and I don't like to bore him with moment to moment bulletins (as the symptoms can change unpredictably during the day), but I wish he would realise that on the very rare occasions that I ask him to do something, it's not out of laziness, it's because it is such a huge effort for me. Sometimes I just drag myself up and do it anyway to avoid him sulking and making me feel guilty and inadequate, as well as ill. 😕 So not that "stoic" all the time, sadly. I think it's particularly hard for people who are fantastically fit (at 64 he still runs half marathons) to empathise with pain and exhaustion to the point of disability.

frogmorton

We are both doing well thank you @deoknight.

My daughter is at college up in Scotland and l keep on going as usual!

I shall remind my husband just how much he is appreciated again thanks for reminding me 🙂

deoknight

https://community.versusarthritis.org/discussion/comment/672054#Comment_672054

Thanks for posting your experience @Lilymary. As a partner it’s sometimes hard to see the bad moments - that’s one of the cruellest aspects of arthritis. You can’t really see the exhaustion and pain that builds up in your partner. It’s not like a wound - which would be blindingly obvious.

I find it’s always a difficult balance. You want to be sympathetic and help but you don’t want over mollycoddle your partner as your worried it could be seen as condescending.

From the partner POV I would like to know when the pain/exhaustion is too much. I often ask my wife to provide me a score out of ten. 1 is feeling fine 10 being abject agony. Anything over a 5 and I try to support as much as possible.

Remember to talk to each other about how you ‘feel’ emotionally rather than just your symptoms. He’s your partner not your rheumatologist! You’re each other’s emotional support.

Lilymary

Thank you deoknight, we all need to see this from both sides x

stickywicket

I find this interesting so thank you for starting it, deoknight.

 I’m in broad agreement with Airwave and LilyMary. It is hard for our fit and healthy other halves to understand what we feel like though mine did get a fair dose of it just before his THR op.

 But I’m totally with Airwave when he writes “I’m not even sure I wouldn’t have reacted poorly to having constant empathy poured over me, I prefer life as it is.” I began my arthritic life early so it was essential for me to fight off parental anxieties about what I should and shouldn’t do. Having won my independence there’s no way I was ever going to let it go, so too much care and cossetting would have gone down like a lead balloon and destroyed our marriage. Luckily, Mr SW knew what he was getting in to though he still has that tendency of fit and healthy people to want to march me off to the doc to be fixed when something takes a turn for the worse. We do discuss all the major things but I see no point in raising his anxieties over a minor thing that will sort itself out One thing I love is that if, on occasions, I mention I’m thinking about seeing the local physio (private because the NHS ones, though lovely, take 6 months) he’s very supportive.

He still is puzzled that I usually decline any offer to hang the clothes out. He doesn’t quite get that, for me, that’s exercise. He does it in one trip and three or four minutes. I do it in six trips, about twenty minutes and a spot of Anglo Saxon. He goes for walks to get exerciose. I vac, mop, dust, clean and cook. Nowhere near as much fun but it allows me to retain my independence and usefulness. I get my Vit D in the garden with a glass of wine.

There is compromise on both sides. I don’t drive these days so, if we’re going out somewhere local for a meal and he, naturally, wants a glass or two of wine or beer, I will grit my teeth and sit in the wheelchair unless it’s freezing cold. He has been known to be drunk in charge of a wheelchair. It's scary but fun😄

deoknight

Hi everyone,

I have an update for you all. After moving house we are under the care of a new rheumatologist. Looking at my wife afresh he is working to a new diagnosis of ankylosing spondylitis.

To finally have a more ‘mainstream’ diagnosis has been a huge relief to us both. We feel that finally after a long 9 years we will be finally treating the disease properly. Here’s to the future.

stickywicket

I hope you'll both be very happy in your new home and with the new consultant.

As I recall, your wife's previous diagnosis was seronegative inflammatory arthritis. AS (Ankylosing Spondylitis) is a form of sero-neg. Presumably, she was on DMARDS before and will still be - probably on the same ones - if the consultant runs with an AS diagnosis. However, if she's flaring, another med might be added or a change of DMARD prescribed. Good luck.

frogmorton

Hi @deoknight

I very much hope this new diagnosis is helpful in the getting the right treatment for you wife ((()))

A new pair of eyes is always useful👍️

Airwave!

Had to agree with Sticky’s comments, it made me smile. Relationships are a curious thing, I used to think that loving each other was enough but as I grew older I realised how much more convoluted relationships are and what makes it work for one couple is absolute anathema for another. We are staring at nearly 50 years together and madam still comes up with notions I never imagined, hey ho. We do plenty of talking but never insist that we bend to each other’s views.