I’ve previously used this site to ask questions (and have been incredibly grateful for the advice and support received), but I wanted the opportunity to share with you the positive experiences I’ve had with running. I wanted to share this as I’ve seen a number of questions banded about on the internet about running with lupus, and whilst of course everyone’s experience with an autoimmune disease is different I wanted to say that yes it is possible......
My story with lupus began last year; after a terrible 12 months of illness with the ‘usual’ symptoms, the ANA tests came back positive. The rheumy is still unable to confirm lupus or sjogren’s (although I have no problems with eyes or mouth so we’re quite certain it’s lupus, but I think there’s a reluctance to say for definite too soon!).
Prior to these problems, I’d been a keen runner, beginning at first puffing and panting after a mile, but eventually moving on to run several half marathons. As you can imagine, during the course of 2011 running felt incredibly difficult (at times impossible), and this time last year I thought I’d never be running properly again. But now, in less than four weeks time, I’m going to be running in the London Marathon!
There’s a part of me that finds it hard to believe that I’m even writing those words, let alone am actually set to run the marathon that I’ve avidly watched every year on the television since I was a young girl. But thanks to a good dosage of medication, patience and support, I’m doing it.
There have been numerous trials along the way in my training, not least with flares, joint pains, severe chest pains, swollen glands, fatigue, etc (and seemingly catching every illness going); my raynaud’s also caused me to sprain both my ankles in December (due to the numbness of my feet), and I had another experience of falling off a cross trainer due to the same problem. Another time after a long run my hands were so numb it took me 15 minutes to be able to flex my fingers enough to use my front door key and get into my own house!
You see, whilst running with lupus is not impossible, it certainly does make it more of a challenge.
We all know that we cannot predict what each day will hold for us; therefore whilst I can plan my training to a tee, there is never a guarantee of if and when I will be able to run. But listening to my body is essential; I’ve tried to run whilst on the start of a flare before, and believe me, it is not a pleasant experience. I ended up hobbling home in tears with the pain I was in.
I've found though that the key is to run whenever I am able to. If I feel good then I know I must get my running shoes on, as if I put it off until tomorrow I can’t guarantee that I’ll be well enough to do it. This can actually turn out to be a real positive; I’m sure that most ‘normal’ runners would agree that there are times when it can feel like a real effort to convince yourself to go for a run. For me, I really relish every time I am able to run, and so needless excuses are few and far between.
Of course there’s a nagging concern that my body may get me through the training but come race day if a flare starts then there’s nothing to be done. I’ve been panicking about this for a while in the build up to the marathon, but I’ve come to accept that this is unfortunately part and parcel of the disease, and whilst it is incredibly frustrating it just has to be accepted as a possibility.
During my training there are lots of things I’ve had to give up; training for an event as big as a marathon means that between that and work I’m pretty much beat; but my friends and family are incredibly understanding about why I’m such a stranger to them for the time being.
I firmly believe though that overall running has actually helped my health; after all, exercise is good for joints, makes you more positive (helping stave off any feelings of depression) and also runners tend to have a healthy balanced diet, which I also think is so important. Whilst running a marathon may not be for everyone, I’m a definite advocate of running for health!
I applied for the marathon before I had any diagnosis, and so applied to run it for the British Heart Foundation (although given my chest pains maybe it is quite suitable 
It would be really good to hear from others who are running with lupus too.
Lindsay
- when I go through a flare, I listen to my body and advise my participants that I'll be doing the lower options on those nights (of course, they have to work even harder!) Exercise and fitness are my passion and I do get angry and frustrated when Lupus gets in the way but I believe I would feel far worse without having this as my career. Good luck with the marathon and thanks for sharing! 
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