Joanne's Story

I am a 34 year old mother of two young children, living with ME. In May 2014 I was finally diagnosed with ME CFS after being severely ill for 9 months. I’d had countless blood tests, x-rays, antibiotics plus the stress of not knowing what was wrong with me – what a rollercoaster ride that was! I had gone from being a very active, working mum, to being so weak and in pain, with sinusitis, laryngitis and chest infections. My immune system had given up. I couldn’t even manage minor tasks. I began to feel like I was stuck in a frail 89 year old body, trying to still live my normal life and carry on working.
After my diagnosis I was still in denial. I have always classed myself as a driven person, very positive and determined not to give in or ask for help. In my head if I did this then the ME would have won. My health continued to decline. The hospital explained ‘Pacing’ to me and how it was important to know my bodies limitations and reassured me that I was not being ‘lazy’. Wow! I so hated that word.
To me life was for living. My previous lifestyle, rushing around, fitting everything in, surely meant I was achieving? So the battle for self acceptance and understanding had to begin. I decided to take a break from work. I do hope to return part-time in the future. It’s good to dream and have ambitions.

I have now accepted that I am not Lazy. I am waking up every morning, alive and breathing with two beautiful children, and that is a blessing. Anything else is a bonus. I use crutches for short walks. These take pressure off my leg and help reduce my pain and balance me, especially when my legs are having major spasms. I am unable to drive my car very far as the Pedals feel like ton weights under my feet. The slightest exertion brings on severe fatigue followed by brain fog! This in itself proves challenging when I am trying to express myself within a conversation! Cleaning my home is a thing of the past! I am hypersensitive to man-made chemicals. I also have to avoid some processed foods and drinks. When I do go out, if I stand in a room or a shop with a person who is wearing perfume, or an excessive amount of deodorant, this causes a crash, bringing on severe muscle spasms and burning joints. Washing my hair has had to become the main activity of that day, with lots of rest needed afterward. Pre-ME I washed my hair at least 4 times a week, now it gets washed only once a week!
Over the last year I was becoming more and more housebound, and therefore so were my children, as all my energy was used getting my youngest son to and from school. I was then blessed by a friend’s chance meeting with a stranger, who was a member of the Ely ME Support Group on Facebook. Through this chance meeting I became a member and through chatting I found out how to get a second hand wheel chair. Now my weekends have changed for the better! The following weekend I enjoyed a relaxing trip out in the forest with my son and my new wheels, without worrying ‘Will this outing bring on a crash?’ I was laughing to myself when I had to get out of my chair to use the toilet, I felt like I was on the little Britain comedy show! How my life has changed! I now dream of owning an electric wheel chair!
ME really makes you stop and focus on your own being. I have so many symptoms: recurrent flu like symptoms; sore throat; burning painful toes, knees and joints; tinnitus; vertigo; blurred vision; migraines; sleep issues; muscle weakness; confusion; speech difficulties; hypersensitivity to chemicals and noisy busy places; and painful swollen glands. I never know from one day to the next how I will wake up feeling. Some days it is so debilitating that the frustration really kicks in. ME for me feels like my body is imprisoned. Gone are the days at the gym or even going out clothes shopping!
No-one really knows what the person next to them is going though. Experiencing, love understanding and support is a big help to me. I thank my children and partner for all their support, as I move along my journey still smiling. They are my rock keeping me strong and positive.
Thank you for reading my story.
Joanne