Not sure where to start... Help with adaptations and costs

missdusk91

I may well be spirally after a trying few weeks but Im not sure what to do or if I can get any help at all.

I was diagnosed just over a year ago with Psoriatic Arthritis, I had just turned 30 at the time. I was put on 15mg Methotrexate injections (initially tablets but they made mevery unwell). I seemed to be ok on the injections for a while and had improved from before starting treatment, however my joint had started to become stiff, swollen and painful again so they increased my methotrexate to 17.5mg. I then spent 3 weeks feeling like i was going to be sick constantly and then started actually being sick. A blood test showed one of the levels measured to check on my liver had shot way way up so they told me to take a break from methotreacte for 2 weeks, test again to see if i could restart methotreaxate and put my dosage back down to 15mg. I go back later in the month to discuss adding in sulfasalizine as well.

Anyway that brings up to date and im struggling, im not sure if its the cold, the break a flare up or a combination of all of the above but I ache and hurt. My knee is so swollen im struggling to bend it and its so stiff and heavy when im "walking" (its more of an awkward shuffle) it feels like there is a weight attached to it. Its not happy straight and elevated, its not happy straight and down, its not happy with a slight bend. its just not happy. Im taking paracetamol and ibuprofen which doesnt seem to be doing a lot. Im struggling with the stairs, i work from home but have been unable to sit at my desk and have had to take my laptop to the sofa where I can sit with it up/ down and essentially flex it between positions as needed more easily. Because of struggling with the stairs im beginning to wonder if i need to set myself up at my sons desk upstairs so I dont have to go up and down to use the toilet. Yesterday i wasnt able to get in the car due to a combination of not being able to bend my knee/open the car door far enough at a local carpark so had to kill time for an hour while waiting for the person parked next to me to come back. Some days I cant do the washing up or prepare food because my hands hurt gripping anything for too long. i used to crochet but i cant do that anymore as i cant maintain yarn tension or grip the hook.

Todays lows have included needing to get my partner to help me get in and out of the bath to shower (over the bath shower) and I'm unable to do the school run so hes needing to do that as well.

We've made some changes to try and help, i have a walking stick I keep in my bag all the time and use as needed, where we were sharing a car because im now relying on it weve had to purchase a second automatic vehicle (clutch foot has on occasion been painful enough to stop me driving) for me.

Im just beginning to feel at a loss with it all. Im 31, mother to a young son and my partner should be my partner not feel like my carer! We have been relatively lucky and comfortable both working full time and not needing financial help and having a landlord who hasnt increased our rent for a while and below market rent. Now cost of living and feeling like its gone downhill is making me panic. Everything costs more and now im mounting up extra costs trying to maintain the life weve been used to with this Arthritis. Im panicking we now need things like downstairs toilet, walk in shower etc and living in private rental its not something we can get without moving. Im not sure we can afford to move, we currently pay below market rental value and landlord has never really increased rent as shes a rare breed of landlord where shes not looking to make profit on the property as such, just have her expenses covered and pay the mortgage on it so she can sell when she retires. To get even a similar sized small 2 bed in the area we would be looking at an increase of £400 - £500 a month in rent and we dont have it.

How do people cope with paying for the extra bits you need to keep going? What changes have people been able to make to make things easier, particularly if your in rented accomodation where making changes is restricted?

I know things may get better but im torturing myself in not knowing what i can do if they dont.

chrisb

Hi @missdusk91,

You were diagnosed with Psoriatic Arthritis just over a year ago, the medication you’ve been taking has caused some side effects so you’ve been advised to take a break for a couple of weeks. You’re struggling with mobility which is making some everyday tasks very difficult. You’re understandably concerned about the increasing cost of living at a time when ideally you’d be moving somewhere where you could invest in modifications to your accommodation to make life easier. You’d like to hear from anyone who has found themselves in a similar position including changes they have made to ease their situation.

I hope that there are forum members who can provide you with some useful advice.

In addition, you may find the links below useful.

This one contains multiple articles on Psoriatic Arthritis:

https://www.versusarthritis.org/search?query=Psoriatic+Arthritis

Here’s a current discussion that you may wish to join in with:

https://community.versusarthritis.org/discussion/58895/psoriatic-arthritis

I hope you receive some valuable feedback.

In addition, on Living with arthritis we have posts from many members who live with arthritis, I'm sure you will be able to find some other discussions you may wish to join in on or alternatively start a new one. 

Best Wishes

ChrisB (Moderator)

jamieA

Hi @missdusk91

I was diagnosed with PsA in 2020. I assume you are under the care of a rheumatologist and if I were you I'd contact them and detail in writing your situation as you have in your post. If your existing drugs aren't working the rheumatologist needs to do something about it. In my case when sulfasalazine and then MTX didn't work I wrote to my rheumatologist and told him if he wasn't prepared to help me then to refer me to another consultant. I was put on the biologic adalimumab a month later. The biologic has helped me significantly - I'm functional now where I wasn't before.

I hope you get some progress.

stickywicket

Your header suggests that you're interested in adaptations. Occupational therapists are the great advisors here and we can self-refer by finding the Adult Social Care dept. at our local council. I find them great. Little things such as pick up sticks and grab rails they usually, in my experience, provide free. Larger items (we had our bathroom adapted to a walk-in shower and higher loo) they provided some money and some terrific guidance, towards it.

For smaller gadgets eg electric can and jar openers, and loads of helpful stuff for everywhere in the house, try any disability store.

I'm sure that, once you get on the right combination of meds for you, things will improve.