Life with MS fatigue

Tue 18 February 2020

Brian Williams

I was diagnosed with MS when I was 29 but had been searching for a diagnosis since I first presented obvious signs at the age of 19.

Living with secondary progressive MS

I'm now 67 years old and live with my wife Pauline who has been my rock, especially since I retired on medical grounds at the age of 49.

I'm now classified as ‘secondary progressive’ and have been since 2002. My walking is impaired and I have to use a walking stick and a mobility scooter for longer distances. I'm also deaf as a result of the condition.

Life is good, though, and I've been blessed. Had they told me upon diagnosis in 1982 that this is how I would be, I would've accepted it.

Taking responsibility for our own health

Following my diagnosis, I tended to over compensate workwise and became successful in my career in personal finance. I eventually had to give up working in 2002 when I transitioned to secondary progressive MS.

My concerns about MS have now moved from concerns about myself to any future generations who may have to encounter what we went through. I've come to realise there’s only so much the health professionals can do for us. The rest is down to us and we must take responsibility for our own health.

I attended a six-week health and wellbeing course (Education Programme for Patients) and it helped make a huge difference in my life. It led me to train to be a course tutor which I thoroughly enjoy to this day.

I recently received an award for ten years of voluntary service. This experience lead me to volunteer my services to the Fatigue Management course trial which we recently completed.

There’s only so much the health professionals can do for us
Brian Williams

Reviewing the MS fatigue self management course

I've always battled against the debilitating effects of fatigue, so I know I would have gladly sought access to such a program when I was diagnosed.

While it may not offer transformative information for everyone, it's still reassuring to find you are not imagining the symptoms you feel. I think it's vital that this easily accessible advice and guidance be available for all.

The sessions were easy to follow and there’s much comfort to be gained by knowing you are not alone. The session on ‘Sleep’ I found particularly useful and also ‘Do, Delegate, Delete’ stayed firmly in my mind.

Giving yourself ‘Permission’ not to do things at certain times enables ‘Pacing’ to come to the fore. The idea that stress feeds fatigue particularly resonated with me, it was a reflection of my earlier experiences. My life now revolves around avoiding as much stress as possible.

Work and MS

I never informed my employers about my MS. As I wasn't office bound and worked a lot from home I could adapt my working schedule and have catnaps in the afternoons. It was only relevant in my final year of working anyway.

I would advise any newly diagnosed now not to do what I did. Any reasonable employer will make adaptations to accommodate any problems that may arise.

I believe that being able to continue working is vital for the general wellbeing of everyone. I was lucky to be able to continue working for 20 years following diagnosis with only my wife and I knowing. But if and when you have to give up work, I recommend that people embrace it.

Keep active and do voluntary work where you concentrate on what you can still do, not what you can’t. As I mentioned previously, we have been blessed and life is still good.

Try our online fatigue management course