Running with lupus

By Karen Stenhouse of the Galavanters

When I was 26 ( I am now 52) I was diagnosed with lupus (also known as SLE) after having my first son. Lupus is an auto immune disease, which means that my immune system works against me rather than for me.

Just after my son was born I started to get a lot of swelling in my feet and hands, to the point that it was hard to walk in the morning. There were days that I was unable to dress my son or myself as my hands were so bad. Over time the symptoms got worse and the pain was causing problems with most of my joints. Every time I got a cold it turned into a chest infection and over time this has caused scarring on my lungs (similar to COPD although I have never smoked). This has caused issues with walking at times, especially up hills, as I could not get my breath.

Then about 10 years ago I had chronic fatigue syndrome and I was very ill for about 10 months. This affected all my motor skills so was unable to do most things without help. I was in so much pain at night I could not even turn myself over. I think after that I had pretty much written myself off.

But about three years ago my husband, my sister and I decided to do a 26 mile walk for Macmillan Cancer Support. We went out walking most days for a short walk and then at weekends for longer walks. I would always say that I did not want a route with hills as I really hated the feeling of struggling to get my breath back. Well, we managed the walk on Hadrian’s Wall and I felt a real sense of achievement. Last year my husband, sister and niece and I did another walk for Macmillan along the Northumbrian Coast and again put in all the same training. I felt when we were doing this that my fitness was getting better and every now and then when my husband would stop to tie his laces I would run on so he would need to catch up. At this point I kept saying I could maybe think about taking up running.

In October 2018 my husband convinced me to join jogscotland group the Galavanters, thinking that I would only be able to do the first few weeks at most. I was so nervous of going, as I am also quite shy and did not know anyone. The first session was really hard and all we did was run for 1 minute and walk for 1.5 minutes, eight times.

When I got home it was amazing the feeling of achievement that I had actually done this. I kept going back week after week and it was hard, but the feeling afterwards and the support from the wonderful people that organise the group

was enough to keep me wanting to try. On week 8 I ran my first 5K in 40 minutes (it was not all running I had to walk a few times but I did it). I then was hit with a succession of colds, chest infection and a virus which kept me from running for about six weeks.

At the start of March I had to go to the doctors to get annual breathing tests to check how my lungs are. The results of this most recent test shows that my lungs are stronger than they were two years ago – and the nurse advised that this is definitely due to the running that I have been doing with The Galavanters. When I left the doctors you would have thought I had won the lottery! I felt that I have achieved something really big in my life and the feeling of pride is overwhelming.

I joined back to The Galavanters for the last three weeks of the couch to 5K and on one of the worst nights of the year completed another 5K in 38 minutes (again, short walks were needed but I ran for the longest time so far). Since I started running in October I have been so, so hard on myself because as the saying goes, “I wanted to run before I could walk”, but doing the 5K, I actually felt like a runner, so it does take time – it doesn’t happen overnight.