Hi, my name is Melanie and this is my 36 year journey with M.E.
For someone who’s frightened of heights and fast rides it’s been one hell of a rollercoaster. I haven’t just battled with extreme fatigue, weakness, nausea, light sensitivity, flu like symptoms, palpitations and crashes (if you know you know)
I also struggle with ongoing guilt, crippling anxiety and I mourn the life I was once passionately working towards.
I was 18 when I first began with subtle symptoms like picking up my new born son, my arms felt like they were being pulled down a sort of resistance, I didn’t think too much of it after all I was only a month or two post giving birth. I needed a blood transfusion after my son was born so I was a little ignorant to this feeling in my arms and put it down to becoming a new mum.
As the months passed this heaviness continued on and off, in fact it started happening in situations such as pushing the pram or trying to shampoo and dry my hair. Even putting my hair up, the ache was so painful I found myself bending over as far down as I could to relieve the pain in my arms. Then came the fatigue, this wasn’t like feeling tired and just needing a nap, there was no choice but to give in and sleep which was difficult because I was a mother.
I found myself trying to fit in extra sleep during the day around my sons routine.
I was still able to do everything I normally could but I’d always feel sluggish and never felt rejuvenated no matter how much sleep and rest I had.
I became pregnant with my second baby and during the pregnancy I actually felt great. I remember feeling tired but not overwhelming fatigued, it just felt backwards and I couldn’t make sense of it but I was happy and I thought it was all behind me, how wrong was I.
Within a month of giving birth to my daughter my arms began to feel like lead, it was painful to lift them and my energy plummeted again. It was difficult to carry out tasks that meant keeping my arms slightly raised like pushing the pram or the shopping trolley, holding carrier bags was very painful because my fingers would become stiff and lock around the handle, it would take a few minutes to gradually manage to open my fingers and for the pain to subside. These tasks wiped me out. I had no choice but to visit my GP, she put it down to hormonal changes which made sense but something in me knew it was more that. I carried on and continued to pace my way through the next couple of years having “crashes” at least two a year to begin with. During a crash my body would become heavy and it was hard to talk, almost like a heavy sedation, sometimes different limbs would become numb for short periods and strangely I always become really really thirsty. There’s been times I’ve literally crawled up the stairs.
My body ached from head to toe. I was weak and had to lie down for hours during the day and still sleep throughout the night.
Early on on “regular” days I’d push through and go to the gym or for a swim with a friend just so I had some normality. I’d go out just so I wasn’t stuck in the house but I’d always pay for it and end up in agony days later.
Eventually I visited the GP again and I was referred to a rheumatologist, then came my first diagnosis, Fibromyalgia. It was a relief to know there was a reason for how I was feeling. I was also dealing with flare ups of back pain which started in my early teens. I had an MRI scan of my spine in my mid 20’s which confirmed early onset degenerative disc disease. It’s normal for us to have these findings as we age but not this early in life. It’s extremely debilitating and agonising which in turn causes more fatigue. Over time I had a couple more reviews with my consultant and after five years I was diagnosed with M.E. The crashes became more frequent, the fatigue was gradually worsening and I was waking up with 50% battery and by 4pm I was down to 15% and pushing through meal times. I would skip showers because I had no energy and taking baths was not an option because I’d need help getting out and it felt degrading. During flare ups doing small everyday tasks would wipe me out completely, the washing was left in a huge pile on the bedroom floor and shopping for food was out of the question.
I went on to have five children in total and during all of my pregnancies I felt well from an M.E. perspective. My consultant said the influx of different hormones could quite possibly be the reason.
During periods when I felt well I decided to try and work part time but eventually I had to stop completely if I was to try and have some quality of life. I also became a full time carer for my third child whom has mild left side hemiplegia and ASD so I had a challenging time supporting and making sure her needs were being met.
My children unfortunately missed out on many things like days out or visiting family as often as I would have liked and it became progressively worse as the years passed. They did have yearly holidays and a few days out every now and again, my first husband drove us to our destination and the least I could do was give a 100 percent of myself even though I was running on 50 percent. In my head I had all of these things I wanted to do with them but I would make excuse after excuse because I felt constantly drained and I was lucky to be able to get dressed some days.
I would drive to school at least an hour early just so I could sleep before having to drive back home but I’d tell people it was because I wanted a parking space as to avoid explaining why I had to sleep.
I’m extremely fortunate and blessed to have a very supportive and understanding family. They’re always considering my needs and going out of their way to accommodate my needs. I very rarely go to visit my family, they come to me and it’s almost always a morning visit because I’m extremely fatigued by early afternoon. I only have one stable friend who is also very understanding and patient when it comes to catching up with her, I cancel often because I just don’t know from one hour to the next if I’ll be well enough for a visit. My husband is my full time carer now. On the outside it wouldn’t appear that I’d need full time care and it’s hard to accept myself but then I think to myself…
Let’s imagine I had a part time job again, what would be the basic requirements to keep that job?
Let’s start with waking up and going to have a shower. Think about what’s involved when taking a shower, then having to get out and dry yourself and your hair, then finding your clothes and putting them on piece by piece, by now my battery life is around 85 percent.
Then I make a packed lunch, a ham sandwich which I wrap in tin foil. Then I open the multi pack of crisps and grab my favourite cheese and onion and stuff that into my IKEA butty box I then choose my Granny Smith and cut that in half because it doesn’t fit into my butty box, not forgetting to fill my flask up (not from IKEA)
My battery life is now around 60 percent because I’m still losing charge from the shower I had and from drying and getting myself dressed.
Then I have to physically get to my job.
If I take advantage of public transport for example, I catch a bus (not literally, obviously, I can’t even push a trolley) going by bus would be taxing on my mental capacity which also contributes to my overall battery life. The constant stopping to allow people to get on and off, the noise of the doors opening and closing every 60 seconds, the talking, the bright lights from the windows, I find that extremely difficult. Then I’d have to get off the bus as close to the job as possible and walk the rest of the 3 minutes. It’s 9:30am and by now my battery life is at 50 percent and still draining from the previous tasks that I’ve managed to accomplish that day.
Most importantly I have to give the job my full attention even though I’ve specifically chosen a job that doesn’t require too much physical responsibility. I want to work but my body is rejecting my contribution. I still have to get home and make my tea, put a load in the washing machine, wash last nights pots and hoover the living room then do my night time routine, and I have to do it all again the next day. I can’t just go to a last minute family meal or pop to see my parents for an hour, I can’t just take my grandchildren out last minute and I certainly can no longer study for that SENco position I’m still passionate about.
This is where I become a statistic behind the movement “The Millions Missing”
My wonderful husband will push me in my wheelchair not because I can’t physically walk but to help me reserve energy and to prolong the pain that is inevitably awaiting me. He cooks all of my meals and takes care of the household so I can be present for my children and family and maintain some joy in the little hobbies that I switch between, often falling asleep .
I will drive my automatic car but only if I’ve paced myself leading up to it and I never go far.
I can’t physically keep up with day to day life. I’m lost. The footprints I once intentionally left in the sand can no longer beat the ripple of the tide ahead of them.
The more my family grows the less I can give.
I feel so much guilt because I miss my family and I wish my relationship with my nieces and nephews was stronger. I wish I could be the daughter, sister, mum, wife and Ninny my heart wants to be. I’d love to take my mum out for afternoon tea or go on a walk with my dad around a lovely park without needing to be pushed in a wheelchair. I’d love to take my nieces and nephews to the cinema or my grandchildren swimming and go on coffee dates with my siblings. I miss walking side by side holding hands with my husband.
I’d love to have been able to finish my course and qualifiy as a SENco and meet the needs of families and their children’s SEN. I’d love for my husband to work a 9 to 5 job and have work colleagues and more friends but he’s sacrificed his own lifestyle to make mine life a happier and more manageable one.
This is just a snippet of what life is like living with M.E.
I’m one of the “millions missing”