Depression

MSpear

Hi,

I was diagnosed with psoriatic arthritis almost a year ago now. Thankfully I don’t have any joint damage, but i have got enthesitis and bursitis in my hips knees and feet. Ive always loved shoes, but i have to wear orthopaedic shoes now.

ive always been really active, im a big hiker and cyclist and my husband and i used to either hike 10 miles every Sunday or cycle 20. I can no longer do either, and i feel ive ruined my husbands life because he wont go out without me. I have slowly built up my walking a couple of times, but every time i have a flare i go back to square one.

ive just started DMARDS - sulfasalazine - 2 weeks ago, so hoping they will help, but to be honest, i dont feel i have a life anymore. If i stay at home and just potter and go out once a day - either to walk the dog or pop to the shops - i cant do both - I’m reasonably ok, but going into town etc is out of the question.

I work from home and have a fantastic job, which is my respite. But apart from that the only highlight to my day is eating and a glass of wine in the evening. Ive never been over weight before, but i am now, and i get very depressed. I’m in a huge hole and dont know how to climb out.

any tips and advice would be greatly appreciated.

melissa

Tom

Welcome to the Forum, @Mspear. I see that you received a diagnosis of PSA some 12 months ago and have started on Sulfasalazine a fortnight ago. You regret the loss of your active lifestyle and the effect you feel this is having on your husband.

The first thing to say, is that it can be a matter of three months before the Sulfasalazine has an effect. The second is that the emotional impact of your condition is very real. Here are some links that may help:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

https://www.versusarthritis.org/news/2020/october/i-found-the-online-community-a-month-after-diagnosis-and-am-so-glad-i-did/

We wish you all the best, and please let the Community how you get on.

Tom, Moderator.

Lilymary

Hi MSpear, I do sympathise, I used to be very active too, along iwth my husband, and fell walking was one of our main shared pleasures. Once my osteo arthritis kicked in, this was no longer possible, and like you, it left a huge hole in my life. It rapidly got to the stage that I could barely get round a supermarket, and walks of more than a mile or so were impossible, and extremely painful.

I do understand your sense of guilt. Luckily my husband is fairly self-contained, and I've been happy for him to continue his walking without me. He now walks once or twice a week with friends, so I don't have to feel guilty that my immobility has curtailed his pleasures too. Perhaps you could encourage your husband to sound out friends as walking partners, or find a local rambling group that he could join. (If he doesn't like group walking, he may meet someone in the group who feels the same.) This does at least take that pressure off you.

But it doesn't help your own loss of being so active. I realise this can be a big part of "who you are", and I struggled with that too. I found other ways to enjoy being outside, by visiting beauty spots for a picnic with friends (even if it's just a flask of coffee and cake!), take up bird watching, sit by a river or lake and enjoy the peace, it all helps. Gardening also helped - it's a great way of getting in touch with nature. You can do it in small bursts if necessary, but it gives you an "outdoor fix". The key thing is not to mourn too much what you've lost, but value the things you can still do. And for all the things you've had to give up, find something new that you enjoy to replace them. For the things you really want to continue to some degree, find new ways to do them, either by adapting or doing them on a smaller scale. Many of these you can share with your husband, so it's a way for you to keep doing outdoor things together.

I found my husband was happy to join me in my lower level activities, as it's a way for him to maintain shared interests, and simply be together. It becomes more about the sharing than the destination. Your husband may be feeling the loss of his walking companion, and it's easy for us to shut them out of what we're going through, which helps neither of us. There are other ways you can share time, and he will learn to value that instead, rather than your shared life simply ending. Your condition isn't your fault, and if you both recognise that, you can work together to find a new way to be a couple again.

You'll also find that keeping active will push the pain into the background, and will help your mental health. Getting your head around a new diagnosis and dealing with the pain and limitations it brings can be a struggle, we can all relate to that, but if you can battle through the acceptance phase, it's not the end of the good times. They will just be different than before.

Mike1

At least you have a supportive partner.

LizS

Hi Melissa, sorry you are feeling like this, I too was an avid hill walker and scuba diver. I have just had my hip replacement so can’t do either at the moment and I know how glum that is making me...for a good few years I had to limit the style of walks I did, and yes, my husband did sometimes feel frustrated that I was acting like an old lady...he was 16 years older than me and was like a mountain goat whilst I was hobbling along like an old lady. However, I may have an idea to share that may help you....I really needed to be outdoors and active to look after my mental well-being, so I tried stand up paddle boarding. It’s easy on the joints and there’s some beautiful lakes with easy launches. But gets you outdoors and exercises the muscles. I found my hip was better after a couple of hours gentle paddling....I’m sadly out of and off the water until next spring accourdong to my physio....but looking forward to getting back out. There are plenty of SUP Facebook groups..,maybe see if there’s one local to you. I’m interested in your diagnosis...I too have pain like you describe but my doctor seems to dismiss it, focusing instead on my osteoarthritis in myhip...did yours show up on any tests?

take care

liz

Figgy

I have osteoarthritis in both hips and scoliosis and can't take a step without a stick. I was really depressed and referred myself to Health in Mind. They saved my life. My advice would be to take one day at a time and focus on what you can do and not what you can't. I so wish you well.

ZiziB

Hi Melissa,

I hope you are feeling a little better today. I saw your message yesterday after coming on here to write what felt like almost exactly the same sentiment ( i too have PsA ,3 months diagnosed but suspect i have had it a long time) I hope getting it out helped. Holding onto all those worries can be part of the problem.Your message prompted me to have a very honest chat with my husband about how he feels so thank you for that!

I too have found that pushing myself too hard and consequently flaring the hardest bit. How much is too much? My physio always says i’m overdoing it but the ‘other’ me pre-diagnosis could tackle it no problem. As @Lilymary pointed out we have a sense of self identity that can take a hammering. I would look at old photos and think to myself ‘ah those were the days i could do x,y and z’ and feel sad but i guess trying to discover a new path can be interesting in itself… i may not be able to scale a slate rock face or clean my windows anymore(horrible job anyway!) but i can watch the birds playing in my garden or take up a new course online…Starting to think in a been there, done that, what’s next sort of mindset.

I hope the meds start to help, that in itself can make you feel so much better. You are not alone out there.

Wishing you well.

Sal🦉