"Affect of illness"

Dear all concerned in my care

I guess first and foremost this is not to elicit sympathy. It's not a complaint about my care. It's not directed at any one person.

It's just me, hoping to try and explain how psoriatic arthritis has and is affecting every part of my life and hoping that you will understand. It's an attempt at advocating for myself.

After a bad reaction to sulphasalazine I was afraid of the medications used to treat the arthritis. Eventually I settled on leflunomide which helped a lot for the first few years but the effect tailed off gradually. I went from working full time to part time to a mere 16 hours. I then changed career and went full time again. But gradually over the next 3 ish years I cut my hours repeatedly as I struggled to cope with pain and fatigue. What I struggled with mostly however was losing my ability to move freely. The stiffness has always been the worst thing for me.

I had point blank refused methotrexate for years and years out of fear. However my health got to a point where I was struggling so much I had a complete breakdown with anxiety and panic attacks. I bombarded my poor GP with calls as I struggled to what felt like even survive. This really was the worst time of my life. At this point I could no longer wash myself or barely dress myself. It took at least 10 minutes just to wiggle off the bed in agony. I had a special toilet installed as twisting became impossible because of my lower back. My lower back is almost like it's made of wood now. It no longer twists or bends and I am so restricted in movements. However there is a silver lining in that my actual lower back no longer hurts the way it used too. It simply doesn't move anymore. The pain is now concentrated down the back of both of my legs with numb patches of skin. Anyway, back to that time of awfulness. All I could see was me ending up stuck in a bed in a care home being hoisted and dressed. The anxiety and panic was quite literally the worst thing to ever happen to me health wise. I would rather be told I have cancer than to ever have to try and live with panic like that again. My GP started citalopram which quite literally saved my life.

And so I started taking methotrexate along with leflunomide. The improvement was massive. Life changing. The anxiety and panic attacks stopped as I could move around again and an OT made a massive difference by getting me a bed bar.

Sadly I started losing my hair. I had to scrape the bed and pillows every morning and the shower blocked every time I washed my hair. At first I decided I didn't care. I would rather have no hair than to go back to how I had been. I was absolutely prepared to be bald. However my daughter and particularly my grandchildren became upset. I had to ask for help after my then 8 yr old grandson said I didn't look like granny anymore.

And so the leflunomide was stopped and I continued with the methotrexate.

The methotrexate does help. However and it's a big However, it's no where near as good as both methotrexate and leflunomide were together.

 I've tasted how things could be. And I desperately want that level of help back. It was by no means a cure, but it was so much better than this. I don't want hair loss, but I'm willing to accept it.

My life is bad knees one week, fingers the next. A few toes another week and an elbow the week after. All swollen and hot and stiff and hurting. It's my back no longer moving properly, terrible pain down my legs. It's no sleep. Waking every 30 minutes to swap sides as the pain from my back is boring into my hips and legs. It's exhaustion.

It's having to have help with simple tasks like hair washing, pulling plugs from sockets, preparing food, cleaning, popping out pills, driving. Its being unable to grip a hairbrush, a toothbrush or squeeze out toothpaste. Its the dread every morning of the pain trying to grip the cord to open the blinds. Its spending a fortune on new cups and glasses as i drop at least one a week. It's a mobility scooter, working out how many stops to make driving to Exeter to cope with the pain. It's clock watching to take the next lot of pain killers, missing out on days out with my grandchildren, its dreading having to stand up from a chair, dreading having to sit for too long, dreading laying in bed, not going to a restaurant in case I can't hold the cutlery that day. It's paying a gardener for a job I loved so much but can no longer do, it's frustration and it's anger and its claustrophobic...

I see my friends my age taking fabulous holidays, riding bikes, gardening, sitting on the beach.

And i want it. I want that life so much. I want a job, to go out, to sleep, to be happy, to have a physical relationship, to ride a bike, to play the piano again. I want to look forward to laying in bed, a day out, sitting in the cinema.

I want a life. I don't want to be sat here thinking I'm 50 now, if I live to 70 that's 20 more years or 7300 more days of pain and stiffness. 7300 more nights of pain and exhaustion. I want to think that's 10 holidays, a new job, days out, hobbies, fun.

Anyway, if you have got this far I want to say thank you to you all for helping me. Thank you for your time and care.

All of the team at North Devon are wonderful. They are caring and refer on to other members of the team to get the tailored help when needed.

Clearly they are overworked and short of staff at times and yet still offer the best of themselves to their patients.

However and this is not a criticism, they clearly have a budget which is minimal. This dictates who gets what meds based on blood results and joints at appointments. In an ideal world where the NHS was not so underfunded, patients would have access to other medications as they do in other countries like the USA.

People can suffer greatly with swollen joints between appointments and have pictures etc. Lives are only half lives, but because during a 15 minute appointment once a year someone's CRP is normal and they may only have a few tender joints then the rest of what they have suffered is not taken into account.

I get that other meds bring more risks and cost more. But because of how you present on the day the rest of how you live and suffer are not taken into account. Lives could be improved so much.