A Window into my Condition

I wanted to give an insight into the daily struggles that aren’t always seen by others — or are sometimes masked by myself — as part of the invisible illness community. Everyone’s experience is different, but I hope someone reading this may relate.

The Night-Time Struggle

Through the night, if I need to turn, I must use a bar at the side of my bed, supplied by an occupational therapist, to help me. My hip is so tender and hurts every time I move. My pain is all over, but my right side is the worst.

The pain wakes me, and sometimes it’s so bad it makes me shiver and jump. My husband helps me with medication during the night and supports me when I’m upset. This has a knock-on effect the next day and adds to my fatigue.

Mornings and Personal Care

When I wake in the morning, my body is riddled with pain and incredibly stiff. It can take me hours just to move. I need help getting out of bed and to the bathroom.

We’ve had to build a shower room with handrails. I need help showering and washing my hair because holding my arms up is too painful. I use a shower stool because I can’t stand for long, and I need help drying and dressing for the same reasons.

This is very hard for me because I love my clothes, but my husband is amazing — he helps me while still giving me all my choices. I know I’m lucky there. He’s also becoming a dab hand at my hair, and my oldest daughter helps me with my hair and makeup, too.

Daily Support and Routine

My husband, who is also my carer, prepares all my medication as well as all the food and drink for me and the rest of the family. I struggle to cut up some foods because of the lack of strength in my hands and fingers, so he helps with that too.

On days he’s not home, he prepares my meals in advance and fills up my one-cup kettle. I’m also lucky to have friends and family who help.

Creams and sprays for my skin. Eye and ear drops. Injections. Rearranging plans because of everything that comes with this condition.

Mobility and Home Adaptations

I have grab rails around my house and a stair lift, which I got at the age of 37. That was a hard moment for me, but I couldn’t manage without it — otherwise I wouldn’t be able to live in my family home.

I use a walking stick, a walker, a wheelchair, and a mobility scooter.

Health Challenges and Treatments

I also get a lot of infections due to being on immunosuppressants. I even had sepsis a few years ago, which was terrifying. I learned a lot from that — any sign of infection now, I get medical attention straight away.

Of course, when I need antibiotics, I must delay my immunosuppressants, which then makes my condition worse and triggers a flare. (Always seek medical advice as everyone is so different.)

I’ve also had bad reactions to medications, like chronic sinusitis, so changing treatments comes with its own challenges. There are lots of hospital, doctor, therapist, and physiotherapist appointments, along with regular blood tests.

There are also other chronic illnesses it can link to, as I have now, including hidradenitis suppurativa. I also experience chondritis chest pains, which I always find very scary.

The Emotional Impact

Parent guilt is the hardest part for me — not being able to run around the park with my daughter still breaks me. Or needing to rest when she wants me to play.

But I know I’m a good mum. My children are loved, cared for, and she sees a mum who doesn’t give up.

There are funny looks because I use a blue badge. Friendships lost because I can’t do what I used to. Body changes from weight gain and medication — these are just a few examples.

I want you to know you’re not alone. We are warriors — the nicest thing anyone has ever said to me. We go through so much and still care about others. I do, because I know how it feels.

Living With Pain — and Strength

I am always in pain, even when I look okay or smile — I am always in pain.

There is still joy in my life. Do I still have bad days? Very much so. Do I cry and feel anxious? Yes, I do.

But knowing I’m not alone in this condition, and wanting to show my children that I won’t let it beat me, keeps me going the most.

My pet peeve is when anyone says, “What happens when you get old?” This isn’t just an older person’s condition. I was diagnosed at 37, and I know others who were diagnosed much younger.

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About the Author

Vicky, a Psoriatic Disease UK volunteer, has lived with psoriatic disease for eight years and has two children. She enjoys music and musicals as well as building her family tree.