My M.E. Journey:
Feeling Hopeless to Feeling Positive
Life before M.E. seems like a distant memory now, but in reality, it wasn’t that long ago, M.E. really does change your life. In the summer of 2014 I was in and out of hospital, I was a bit of a mystery, I seemed to be having a series of strokes, with no idea why this was happening to me. I was scared, worried and could feel my anxiety gradually worsening. The only thing that truly kept me smiling was my beautiful 4-year-old son.
November 2014, I was admitted to hospital once again, but this time it was different. Until this point I had been suffering with weakness in my right-hand side, my right arm was weak, my right leg felt a little weaker, my right eye closed up when I smiled, but my general mobility was fine. However, in November that changed. I was only kept in hospital overnight, I was then discharged and told that I would receive an appointment for a check-up with the stroke team in 2–3 months. My mobility had drastically changed at this point, it seemed that overnight all my strength had been taken away and walking was the hardest task in the world. I was assigned a physiotherapist and told myself that everything was going to be alright, I would see the physio team, they would do some work with me and I would soon be walking around again.
December 2014, and after a few weeks of the physiotherapy team visiting me at home my mobility hadn’t improved. I was also feeling exhausted, not just sometimes but all the time. A small task like brushing my teeth made me feel like I had run a marathon! I was so lucky that I had an amazing person to help me out, my mum. We have always been close and we have a great friendship, which is just as well as suddenly mum became my full-time carer, helping me to the bathroom, bathing me, helping me dress, being a constant shoulder to cry on, and oh my word has there been a lot of tears! I had been to my GP and he referred me to a blood clinic to get a full set of tests run on me. During a conversation with him he mentioned M.E. I went home and read up on the condition and immediately I felt a sense of relief: this was it, this is what was wrong with me, it all made sense. At an appointment with a doctor at the blood clinic it was confirmed that, taking into account the results from some of my tests, my general health and the daily struggles I faced, I had M.E. M.E. is cruel, it takes over your body, it’s unpredictable, things change quickly, it’s pretty invisible and so people don’t consider you to be a ‘sick’ person and there is no cure. Yes, that’s right, no cure, and so I am just going to have to live the rest of my life with M.E., the rest of my life being exhausted constantly, having aching and inflamed joints and muscles, trying to explain what M.E. is to those who think it just means I am ‘a little bit tired’!
I have also been diagnosed with Fibromyalgia, scoliosis, depression and anxiety. I use a mobility aid to help me get around, I have a mobility scooter and a walking frame, and although at first I would feel embarrassed about using them, I have come to realise that they are my key to independence.
My son is now 6 years old and he’s handled everything so well. He now knows that sometimes mummy hurts (we bought a special story book to explain that!), and sometimes she needs to rest and can’t play like she used to. I plan days out for us and ensure I fully rest before and after, so we can still make lots of happy memories.
In 2016 I found myself crippled with anxiety: I was worried about everything all the time, I would be crying and shaking if I was faced with something unexpected. My anxiety all stemmed from my life suddenly changing way back in 2014, and I was petrified in case something happened to me again. I knew that I had to do something about it, I couldn’t let my life be controlled by my anxiety. My local social services department put me in touch with a wellbeing service that is run by my local council, I was assigned a wellbeing worker for 3 months and we met fortnightly to talk about how I was feeling and what kind of help I felt I needed. My wellbeing worker was fantastic, she put me in touch with various local services and groups that I could make use of and I soon found a local charity-funded group that was running a 4-week wellbeing course. I was initially sceptical but I can now actually say it changed my life. I learnt about caring for myself and coping with my emotions, etc. I met other people with similar conditions to me and realised that I’m not alone. I savoured every snippet of information I learnt on the course and my perspective on my life and my wellbeing changed. Although I cannot rid my body of my health conditions, I can look after myself and live the best life that I can and set new goals for myself. I am now taking another course that is run by the same group: this one is a 12-week health challenge, it is the NHS weight loss programme but we also focus on our wellbeing too, and I am more determined than ever to enjoy this next part of my journey. Most NHS Trusts offer a wellbeing service so it is worth checking out what is available in your area. The mental health charity Mind also runs regular wellbeing courses.
A journey … that’s what all this is … full of ups and downs and good days and bad days. We find ourselves with these health issues and we go through so many emotions, then we ‘mourn’ our old life and face new challenges, a life with some limitations, a life of never being full of energy, it sucks … it really does … but we cannot let M.E. define us, it cannot be all that our life is about. It takes time, but with research and the right help from the right places, we can make our days brighter.
I stumbled across M E. Support by chance as I browsed Facebook for some kind of help, advice, support upon my M.E. diagnosis. What I found was a community of people 'just like me', a place I could talk openly and honestly about how I was feeling and where I could gain knowledge and advice about the condition. As it was founded by and run by someone with M.E., I knew I was in the right place and that I was understood. In 2015, my mum and I held our first fundraiser for M.E. Support, and were thrilled to be able to make a donation towards the running costs of this important cause. I took on the role of Public Relations Officer as I am passionate about raising awareness and would love to continue to see M E. Support grow. After taking some time off to focus on my wellbeing and my health, I am now raring to go and spread the word, M.E. Support is here for you.