I’ve always thought of myself as a happy and bubbly person but I could never have imagined how the pain of psoriatic arthritis could affect my life and change the kind of person I was.
My condition started in my mid-teens with the skin condition psoriasis as a bright red, scaly rash in patches in my elbows and on my scalp which peeled hair and all leaving raw patches. It then moved to under my arm as a bright red rash the size of a large grapefruit. I was first diagnosed with severe psoriatic arthritis about five years ago when I was 58 after several episodes of excruciating pain.
The first symptoms I felt were fatigue, swelling, burning and stiffness in the joints. The pain then moved to almost all my joints starting in my knees and moving into my ankles, shoulders hips, feet and hands. The pain was the worst in my hands and feet. My fingers looked like mini-sausages – so swollen and incredibly painful. Not only were they sore but they looked horrible.
ICYMI: The simple phrase to turn anxiety on it’s head.
Many mornings I woke up and wasn’t able to move. I couldn’t get out of bed and was crying in pain, my toes were swollen and curled up, my whole body ached, even bed rest has not reduced the swelling and I was so so tired. The doctors told me I had severe psoriatic arthritis. Apparently, I was one of the ‘lucky ones’ – one of the 30 per cent of people that have psoriasis and go on to develop psoriatic arthritis.
I struggled with the kinds of things most people take for granted like being able to shower, dress myself and get ready for the day. Things like chopping vegetables, opening jars and lifting my arms to reach above my head to get something down from a high shelf and hanging out washing, were near impossible. I struggled getting upstairs as the pain in my joints was so severe and the fatigue was incredible. Everyday living was just such a challenge, but I learnt to push through the pain.
Life goes on .
The most difficult part was being able to take care of myself, embarrassment relying on help with dressing and even doing up my bra. Embarrassingly some days I couldn’t even flush the toilet because the pain in my fingers and hands was so bad. I was heartbroken at my loss of independence, relying on help so often, even on a social day out we would take it easy slowly walking with breaks so I could rest which made me despondent and all my emotions would roll in again in confusion and insecurity.
Some days it was only because of my family that I felt it was possible to keep going. My twin girls, now 29-years-old, have been wonderful and helped me through some of my darkest days dealing with the pain and not being able to do the things most people take for granted. My husband consoled me and helped with lifting, carrying shopping, cooking, removing lids and even turning taps on. My 93-year-old mum was compassionate as she suffers from osteo-arthritis. My niece did my house cleaning. So I had a good support group.
I battled with ongoing pain in my knees and ankles for about eight years before I was diagnosed with general arthritis in my early fifties. I always thought arthritis was something that older people got later in life and honestly didn’t think it was something I needed to worry about.
I work in accounting for a freight company four days a week and my colleagues have been reasonably understanding even though many sick days impacted on work for the team and hindered their performance (for which I felt guilty) because I couldn’t get to work, type on the computer or climb the stairs. I often relied on my daughter to drive me as she worked close by.
It’s amazing how something like this can affect your whole life.
TGM: The mum who let her teenager get lip fillers.
Along with the intense physical pain, swelling and stiffness, I have battled against feelings of anxiety and depression and have had some very dark days where I’ve struggled to look on the positive side and find a silver lining. I became confused and very angry with everyone, everything and especially myself. This was an unusual emotion for me and a constant roller coaster ride my family were wary of and couldn’t understand. This was addressed with counselling.
I also gained quite a bit of weight, nearly 20kg. I felt very self-conscious about my weight and this added to my feelings of depression and made me feel vulnerable and insecure going out with my friends and joining in social events. I just couldn’t be bothered at times it seemed all too hard.
The treatment that worked for me was biologics which I started about nine months ago and to be honest I now have to remind myself how bad it was when I was living with psoriatic arthritis as these days I am feeling so much better.
I really want others living with psoriatic arthritis to know that you don’t have to live with this pain and symptoms. I persevered to find out about everything I could about the condition and what treatments are available. I feel so much better I have just been on a two-week holiday with hubby to Las Vegas and Hawaii for our 30 year anniversary. I would never have contemplated this last year.
At 63 I’ve had my share of pain. Mine is a journey of self-discovery that I’ve only been able to take with the unending support of my husband, beautiful daughters and team of doctors who helped me enormously. I have been incredibly lucky to have such wonderful support that has changed my life.