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Nikki shares her experiences of palmoplantar pustulosis, a form of psoriasis that affects the hands and feet and causes painful pustules to appear on the skin. Nikki's psoriasis and psoriatic arthritis have affected her mobility and confidence over the years. Here she talks about her journey to acceptance.
It took the doctors a year to diagnosis me with Palmoplantar Psoriasis. I recall endless visits to the hospital. On one such occasion, I was seen by 6 or 7 different consultants and was overwhelmed with emotion. I knew that they were there to help me diagnose the condition and put a treatment plan in place, but at the time I remember feeling uncomfortable in my own skin for the first time ever. Everyone was talking about my skin but I was unable to understand a word as they were speaking in jargon; it made me feel so small.
I was half expecting the treatment to be as simple as an over-the-counter cream, but this was far from the case. Being told that I had this condition, alongside the fact that there was no cure, was heart breaking. They explained that they would try different treatments in an attempt to help control the symptoms. I realised, then, that I had underestimated the whole situation.
For over 12 years the condition had covered the palms of my hands and the soles of my feet. It looked like my feet had burnt overnight; they were often raw and very sore, covered in blisters. I was unable to stand for long periods of time. Life became so difficult.
My confidence had gone; I was only in my early 20’s at the time, and realised that I wasn’t even comfortable in my own skin any more. I avoided shaking hands or presenting anything with my hands, fearful of what others may say or think. Even though I had never come across anything negative, it was my own fear and insecurity that led me to behave this way. I stopped wearing heels or getting pedicures done at the salon. I went from being happy and outgoing to a timid person, almost overnight. I also stopped going to any events or places where I might need to remove my shoes.
My eyes became dry and would always appear blood red. It didn’t stop there; a few years later, my nails started to change colour and started to lift from the nail beds. If wearing shoes was uncomfortable before, then this was certainly on a whole other level of pain. I started to get pains in my joints soon after and I felt that I couldn’t go a day without taking painkillers. I was told that this was Psoriatic Arthritis.
Being in pain all the time is the worst feeling in the world. Although I was putting on a brave face, all I wanted to do was curl up and stay in bed. I started pitying myself a lot and sleep became my only escape.
I tried so many steroid-based creams and different ointments, but to no avail. I was then given light therapy treatment sessions, which I hated going to. I went twice a week and taking the corresponding medication just made me feel sick. As a precaution, I also had to wear sunglasses for the whole day. I wouldn’t have minded so much if I was working outside on hot summer days, but my job was based in an office in London, and the weather was anything but hot in late November.
The treatment was not effective. This frustrated me but I was determined to finish the course in the hope that it might help in some way. During my second round of treatment, I broke down and remember crying to the nurses. They were so wonderful and supportive; I recall telling them that the treatment wasn’t working and that I just couldn’t do it anymore.
Undergoing a course of treatment like this affects one’s Mental Health, especially when you don’t feel like yourself anymore. It just makes it so hard to cope. Once all the treatment had stopped, I found myself at my lowest point.
Years later, with no improvement in my condition, I knew Methotrexate was the last option. I was advised of the risks to my body, but I still decided to give it a go in the hope of some remedy. This was originally offered to me years before but I had declined at the time, as I wanted to try some less severe options first. With no alternative left, I decided to give it a go. After only 5 weeks in, my body rejected it and I was taken into hospital. They immediately stopped my treatment.
Being desperate and with no other options left, my Husband and I even considered moving to the USA for a period of 6 months, to start some alternative therapies with some contacts we had made in Las Vegas. But I decided that enough was enough. I wanted no more medication in my body. After years of failed treatment, I just wanted to be free, but I knew that this would only be possible with the guidance of my doctors.
I remember sitting on my bed and crying about why this was happening to me and questioning why I wasn’t able to get better. I looked at myself in the mirror and all I saw was a sad person who just wanted to be pain free again. I decided that this was it. I needed to understand and accept this as it was a part of me that was here to stay. I needed to make my peace with it and carry on with my life as best as I could.
I made a plan; my diet and lifestyle needed to change. I introduced exercise, increased my daily intake of water and removed alcohol and caffeine from my diet. I knew that being around positive people was key and that stress had to go. I made these changes to start afresh. I have realised that medicine is not always the answer.
For just over 3 years now, I have been doing well without any medication. I have had no flare ups and although I do still suffer from joint issues, it is not as painful as it used to be.
I can honestly say that it is because of the 3 most important people in my life; my Mummy, Papa and my Hubby. Being happy from the inside can help heal so much and understanding the problem and cause of pain goes a long way too, as does eliminating stress from your life.
We often suppress our feelings, and this can cause us much more damage in the long run. Overthinking can also lead to stress which exacerbates the condition. I believe that finding the right balance is instrumental in helping ourselves move forward, both physically and mentally.
My Mummy & Papa have taught me so much in my life and the most important of these teachings was how to be brave and how to love yourself to be happy. My Husband taught me how to stay happy. We have worked together to make our home comfortable and loving. He supports me by being my workout buddy and my chef, and has made me see that anything is possible.
I am still healing, and this is how life will be. But I’m happy and that is all that matters. I’m free.
In July, Nikki and her husband will be walking the distance of two half marathons on consecutive days to raise money for the Psoriasis Association. If you would like to support Nikki and her husband in their fundraising efforts head to their JustGiving page.