Mobility: An Ssc Patient Perspective

In September 1997, I was diagnosed with diffuse Systemic Sclerosis (scleroderma) and told by my medical consultant at that time that I would have to use a wheelchair by Christmas. Nine months later, I changed my medical consultant to the super-human beings who are Prof. Dame Black and Prof. Denton.

Fast forward to April 2016, and I have reluctantly bought an electric scooter to help me walk my dogs. Although, as you can see from photo, my white dog, Mitzy, prefers to be in the driving seat!

The decision to buy the scooter was preceded by years of me pushing myself through the day, to perform what I needed to, for that day, to then come home and collapse on my settee / bed, counting the hours until I had to be mobile again.  The pain would force me to be unable to do anything else for the rest of the day, other than be horizontal in my bed with tears rolling down my face.

Although I have minimal internal organ involvement, thankfully — and my heart goes out to my fellow patients who have internal organ involvement — my musculoskeletal system has taken a huge hit from Ssc.

I cannot remember the last day that I did not have any pain all over my body, with only the hardcore opiates being effective for some momentary relief, and of course the dense “mind fog” that accompanies taking them, makes them only an emergency option for me.

This has led to making my day to day reality that I live through the pain by staying at home and avoiding physical exertion unless wholly necessary e.g. medical appointments, weekly BIG shop….

A walk in the park for me, as for most other patients, I am sure, is a huge effort — similar to a mountaineering expedition! I give a whole new description to the phrase ‘a walk in the park’ since Ssc appeared in my body — the preparation for which does not take a casual ten minutes to get ready and out of the door, as seen in pre-diagnosis days, but hours of preparation by attending to my other symptoms (bathing routine, diet, steadying internal temperature etc), before the mammoth task of getting dressed! This brings along added extra challenges — to make sure that the correct clothing and layers are worn, which can be easily removed in the event of a no pre-warning “burn up.”

And of course, items of clothing are another challenge! The material is very important to avoid any skin irritations, as well as clothing must be loose — underwear is most uncomfortable!

My preferred daily outfits, (measured by ease of symptoms), are my fleece pyjamas, dressing gown and Ugg boots with Heatsaver socks to keep my feet warm. I wear gloves for most tasks and use a microwaveable heat warmer to keep my hands warm.

There is certainly no danger of me being caught for speeding with my new wheels. I am only able to manage the slowest pace, which is represented by a tortoise on the speed dial. As, the bouncing around vibration against my back makes the slow pace the least painful option — much to Mitzy’s delight as she struggles to keep up on the fast speed, which is represented by a hare on the speed dial!

Although I feel disappointed that I am not currently able to tear around the park with my dogs like a hare, I am so happy that I have finally stopped dragging myself around, and can return home without collapsing in total agony!

Also, it is a great feeling for me seeing my little “dream team” companions out and about in nature, loving life! It reminds me that maybe I need to be more like a dog in that respect.