What do you think has helped or inspired you during your recovery?
Getting a massage or reflexology treatment was one of the few things guaranteed to make me feel better. This is what led me to decide that when I was well enough, I would train as a massage therapist.
I trained part time at Scottish Massage Schools in Inverness, which meant one weekend a month of intensive training and self practice in between for eight months. After the first weekend, I was wiped out for nearly the whole four weeks until my next course weekend. However by the end of the eight month course I was driving myself through to Inverness for my training and able to treat clients throughout the week at home.
The difference in eight months was quite unbelievable and I genuinely think that having a very positive goal was pivotal in my recovery. I am now a firm believer in the mind-body connection and the very positive effect that our mindset and thoughts can have on health and recovery from illness.
What kind of support did you experience?
First and foremost I could not have recovered without the unwavering support from my parents. Watching your child go through something like that and realising that sometimes, there is actually nothing you can do to help must be heartbreaking. I had to move back in with my parents and they were endlessly supportive in so many ways, be it practical day to day “survival” or just being an endlessly patient and sympathetic ear for my “WHY ME?” moments.
My friends had all largely gone off to University but those who made the time to come and see me were just fantastic. They all knew that it was a given that I might have to cancel or change plans, not have much to talk about, or simply fall asleep!
My GP went over and above. After my diagnosis, even when it became clear that there was very little she could offer me in terms of treatment, she still saw me on a weekly basis just to check in. This was invaluable. Just by having a medical professional who genuinely realised the value of making me feel like I was still being cared for and had not been discharged because they had done all they could for me really helped to somehow “validate” my symptoms. It was also helpful to have someone who was not a family member or friend with whom I could openly talk about how I was feeling. A lot of people living with a chronic illness feel that they are burdening their loved ones and to have an outlet was massively helpful to me.
As previously mentioned, a weekly massage or reflexology treatment was almost like my “holiday” from M.E.
Did you have a favourite song, book or podcast during your recovery time?
I remember hearing Fix you by Coldplay on the radio one day when I was feeling particularly unwell… both mum and I caught each others eye and promptly burst into tears!
Prior to my diagnosis I was very active and loved swimming and horse riding. I had a job as a lifeguard and swimming teacher, I played the fiddle and piano and occasionally gigged with my band. To relax I loved to listen to music and read. All of these things, with the exception of having the radio on as background noise became impossible to me when I was unwell. Even reading was too taxing for me, as I usually got to the end of a paragraph and had already forgotten how it started! Coffee table books with lots of nice pictures were a god send and for those moments when I found myself awake at 2am, unable to sleep I watched Open University programmes on the BBC. This was all pre- smart phones and social media and in many ways – I think that was for the best.
One day, my friend Alison gave me some jewellery making supplies and I found myself completely hooked! It was ideal – jewellery making kept me busy and I could pick it up and put it down as necessary. It was almost like a meditation to me and I created something beautiful at the end of it. When I was well enough I would sell my jewellery at the local market which was an additional confidence boost.
Book recommendations: The Chimp Paradox, by Professor Steve Peters and Cure, A Journey into the science of mind over body, by Jo Marchant
Is there any advice you would give to someone going through M.E.?
Everybody’s experience of M.E. and Chronic Fatigue is different and there is no “one size fits all” treatment or way of managing your symptoms. From that point of view, it is difficult to advise as what worked for me may not work for everyone. The mind-body connection is an important part of living with M.E. and this does not mean staying relentlessly positive, because, quite frankly living with Chronic Fatigue is well, shite.
Taking a step back and looking at your situation, you can ask yourself a couple of things:
- Can I change my situation?
- Can I change my attitude to my situation?
It may be that you can answer “Yes” to one of these questions and act on it, but if not, it is also valuable to realise that you are allowed to be angry, frustrated and sad about your situation. Suffering teaches us a lot and ultimately makes us more resilient and able to deal with the curve balls that life throws at us. But this can be very hard to see when you are so deep in your suffering.
I remember a bit of a turning point for me early on in my illness when my GP said “Quite frankly Sarah, if I was having to live with all that you were living with right now, I’d be pissed off too.”
She validated how I was feeling. It didn’t change how I felt physically, but it really did make me feel better as it somehow gave me ownership of how I was feeling. We are all human at the end of the day.
Have you learnt anything that you otherwise would not have had an awareness of?
Where do I start? Living with M.E. has made me the person who I am today. First and foremost you learn about patience and acceptance. It taught me to respect myself and my body and to honour my limits. It taught me that it is ok to admit that you are struggling and to ask for help. It taught me to accept help with good grace. It taught me that things don’t always go to plan and if they don’t it’s not necessarily the end of the world. It taught me that when things go wrong, you don’t have to give up, you just have to view it as an opportunity to explore other options. It has taught me to take each day at a time and to live in the moment and enjoy every moment.