“No matter how much sleep I get, I always wake up exhausted”

Read 52-year-old Rachel Batten’s honest account of how her MS fatigue affects every aspect of her life

I was diagnosed with multiple sclerosis (MS) last year after being misdiagnosed with fibromyalgia in 2012. I’d had lots of symptoms including optic neuritis, and demyelination on my MRI, since 2008! I also have hypermobility syndrome and am being referred for testing for Ehler Danlos Syndrome.

I have experienced fatigue gradually increasing since 2008 but didn’t think much of it as I am a resilient person and just carry on – I still have a full-time job. I started working at a housing charity last year, and there isn’t enough funding, meaning the casework is huge and there isn’t enough time to get the work done – I’ve really noticed my fatigue increase due to this.

No matter how much sleep I get I always wake up exhausted, like I have not had sleep in two weeks, and have to set my alarm for two hours before I get up. When I get up on a good day I can move around and be focused for a while without being affected by too much fatigue, foot drop and balance issues. On a bad day, it feels like I am walking through treacle and cannot focus, and my fatigue levels can change minute by minute and hour by hour.

Whether I have a good day or bad day, if I am working for home, which I do three times a week usually, I try to have a break for 10-30 mins in the morning and afternoon as well as at lunch. I started this after doing a fatigue management course in Cardiff.

I also try to make sure I am hydrated and eating healthily. I do batch cooking on a good day, perhaps at the weekend, so when I have a bad day, I still have something healthy to heat up in the microwave.

Staying active

I also try and go swimming once a week, even if I feel tired beforehand as often when I come out, I feel more energised. However, if I have planned to go swimming one day and feel fatigued as the day goes on, I swap the day I actually go swimming and don’t force myself.

I am lucky to have a gym that allows me to freeze/cancel my gym membership where I only need to give a week’s notice and pay a £5 cancellation fee. I also have access to a spa pool there so especially at the moment when I have repetitive strain injury, due to work, which I am more likely to get than the average person, I just do four lengths in the pool then sit in the spa pool, then four lengths again, until I have swum 12 lengths in total.

I also try to go to a choir once a week. I could easily stay in bed but once I am up and have some routine, I feel a lot better – although can allow myself on Sundays to just chill and not do much! I also like to travel by train – I don’t drive – and visit friends in other areas (I have an army background so have friends all over!). I live by myself but get a taxi to work (funded by Access to Work) and have the basic level of PIP (which I use for private physio and taxi fares mostly). Having said that, my costs for physio and taxis comes to £600 per month but I only get £400 from PIP so it’s not easy. With everything going on, I need to do a reapplication for PIP but just haven’t had the time!

If you or someone you know is living with MS fatigue, our booklet is bursting with information about this symptom. We’ve just launched our revised Fatigue Choices booklet – check out the latest information here.