Broken

Tillytog

Hi

Im Tilly. I have PsA. Initially it started with plantar fasciitis for about 3 years which I merrily ignored thinking it was just one of those things. Then I started to get pain in my hip. My dad has PsA so I started to put 2+2 together. It took the GP 6 months to make the referral to rheumatology. Who put me on methotrexate and watched me deteriorate fast for the near year. I had to transfer my care 2.5 hours away to be taken seriously. I’ve now been on methotrexate for 18 months and just started Humira.

For me this disease is really aggressive in 18 months I have gone from hip pain and plantar fasciitis to all of my toes, ankles, hips, back, shoulders, neck, wrists and fingers. A lot of swelling and ridiculous fatigue.

Im living in the lounge, was walking with a stick but now I’ve had to buy a wheelchair. I’ve lost friends and family and my husband is the only support I have and he is struggling to manage. I’ve lost my job because I’ve been off sick so long.

I know there are plenty worse off and I am not looking for pity or even solutions I just hope to be heard. I haven’t had an easy life, but this is the first time I have broken.

thank you for letting me vent

Poppyjane

Hello @Tillytog welcome to the online community,

You have experienced a rapid and aggressive progression in your condition and have reached out to be heard. We are here to listen and support you as you adjust to your change of life style which has involved a number of losses, friends, family and career. We are also here for your husband who has become your carer.

We are here to listen to you any time you want to vent, we have all needed to do this at sometime and quite understand the need to share a safe place with others who know where you are coming from. There is also space to share your triumphs and creativity so I hope you have a browse round and look at the hobbies, exercise videos etc.

You mention you have PsA and experience ridiculous fatigue so I have attached some links for your information.

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

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

Many of us have followed the new stretching videos and found them very useful to keep muscles and joints more flexible some of these can be done from a chair so I hope you will find them helpful. Start gently and build up , I know I was reluctant to start any exercise because it was painful but I have stuck with a daily routine and have found it beneficial.

https://www.versusarthritis.org/news/2021/october/new-stretching-videos-to-help-keep-moving-and-manage-your-arthritis/

You say you don't want pity or solutions , you just want to be heard .We hope that this is the start of your friendship with members of the community who are here to listen to and support each other.

So welcome Tilly, we look forward to hearing from you again soon.

Best wishes

Poppyjane

stickywicket

Hi there,

You say you're " not looking for pity or even solutions". Well, the good news is we've no solutions😉 If we had we wouldn't be here. As for pity, I don't think anyone on here will pity you as we're all in the same creaky boat. You may well find compassion, though . (The word, if you're not aware, and forgive me if you are, comes from the Latin 'to suffer with'.) Yup, I guess we all do that.

May I offer some lessons learnt from decades of RA? If you don't want them read no further. No offence will be taken.

1. Check out the exercises (yes, exercises. I know how much you don't feel like doing them!) on here and do them regularly. Very gently, and only a few repetitions each time at first but build up.

2. Find your local council's Adult Social Care phone number. They will send an Occupational Therapist round to assess your needs. They usually provide small items free. More expensive ones (a stair lift?) are means tested. I got them in simply to offer advice on installing a walk-in shower. (I didn't want some commercial firm giving me what was best for them not me.) They did a fantastic job and paid for, I think, 80% of the cost. I now shower independently every day as opposed to having my husband helping me with a bath lift once a week.

3. Do you actually use the wheelchair indoors? I did, very briefly, once while awaiting either a hip or knee. (Can't remember which.) We had red paint marks all over the house! We're now fully laminated and, after 60+ years of this malarkey (initially before DMARDS were on offer) I use a rollator round the house. I'm much more stable that way. I get a little more exercise and am at a decent height for meal prepping.

4. I think it's sad if you've lost famil;y members due to the PsA but friends? No. Real friends step up to the mark. You've only lost the fair weather ones who are no use to anyone. 

5. OK just a small bit of advice - ignore completely if you wish. Don't let a day go by without at least some fun and laughter and some way of helping someone else. For years i combined the two with Riding for the Disabled. Started as a rider and soon found myself on two committees. Think of what works for you and, as one of my grandsons, then aged three, once memorably said "Just do it, do it, do it!"