Share a story by Laura, August 2023
Laura shares her experience of what it’s been like living her 20’s with Severe M.E ahead of her 30th Birthday next month.
One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13. I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much.
I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.
We all have these big ideas about what our 20’s are supposed to look like, how they’re supposed to feel and who we’re supposed to be. I’ve watched through a screen while the majority of people I grew up with have spent their 20s living; been to university, travelled, started careers, fallen in love, had families, bought their own homes, experienced so much.
Meanwhile, in my 20s I have had to have my most basic needs seen to by my Mum, my family, my friends, complete strangers. My Mum and I have spent hours upon hours on the phone to Receptionists, Doctors, Nurses, Social Workers and Carers, often begging for help. I have tried countless medications and experienced countless side effects and struggled to manage countless symptoms by myself. I have been unable to speak and unable to feed myself, unable to sit up and unable to stand, unable to cope with the presence of other people and unable to be safely left alone. I have spent the vast majority of my 20s in bed and alone in the darkness and silence, unable to access the outside world and all it has to offer.
And yet I have experience too, it just looks a little different. I have learned that I still do so much to help the people I love, that my value is not in what job I am not in, that I am a great daughter and sister and auntie. I have learned how to ask for help and how to advocate for myself, that I am brave in times when others have had to look away, that strength is not just physical. I have learned how to let myself feel all my emotions, that positivity is not always needed, and that I am able to eventually laugh through anything. I have learned that friendships with people who just “get it” make a huge difference, that everything is made easier with the right health care and community support, but I have also learned that it isn’t always accessible or freely given.
And that brings me to now, 1 month before my 30th birthday. I still spend most of my life in bed and in the dark and silence. There are still many days when it all feels a little hopeless. But I still desperately want to live.
I don’t know what my 30’s will bring, life with M.E is always uncertain, and I have learned to be mostly okay with that. What I do know is that surviving over a decade with Severe M.E has helped prepare me for whatever comes next, the good and the bad. I know what I’ll be wishing for over my birthday cake.
Share a story by Laura, August 2020
Laura shares her experience of Severe ME and the realities of how each and every day is a matter of survival and how much the little things can make a difference.
In July 2009 I was struck down with an unknown virus which left me hospitalised. I never made a full recovery and within four months I was told I had M.E. When I got my official diagnosis of Myalgic Encephalomyelitis a year after that virus changed my life forever, my paediatrician told me he was 90% sure I would be better within a year. After a steady decline in my health, two and a half years after that appointment I became bed bound and reliant on others for my every need. This was Severe M.E and never did I imagine the suffering an illness often labelled as “just tired” could cause.
Many people with M.E will tell you that there are good and bad days but, in my experience, when you have Severe M.E the good days are rare to non-existent. Each and every day is a matter of survival.
At my worst I was unable to feed myself, lift a cup of water or speak above a whisper. I had to be hoisted onto a commode, washed by others in my bed and was unable to even sit up unaided. Light and noise caused spikes in my symptoms that could last for days or weeks at a time. A loud bang can make me feel physically sick and sometimes just breathing feels like climbing a mountain. I have had to have a catheter since October 2015 because my bladder wouldn’t empty and in March 2018, I had a suprapubic fitted because there was nothing my Doctors could do to fix it. There have been days when I could see the fear in my Mum’s eyes as she watched on whilst I laid in unimaginable pain, unable to do or say anything to help me, days when Paramedics have rushed to my house only to say I’d be better off at home.
For seven years I was unable to walk. To take even a step someone would have to hold all my body weight. I have recently learnt to walk again; it has taken two years of extremely hard work and a lot of setbacks. But even now, as amazing as it feels, walking causes a lot of pain and I am very unsteady. I am doing better than I have in over 7 years and I am so grateful, but I am also aware that nothing is certain with M.E. I still spend over 95% of my time in bed and I still need help with most tasks. The wrong choice or not listening to the signals my body gives me could result in a crash that could easily cause a downward spiral back into total darkness. Nothing is easy and everything comes at a price.
Since having Severe M.E I have become very aware of how much the little things can make a difference. When your days are full of pain and isolation you learn to appreciate what you can. Hearing my Mum fall in the door from work and knowing I’m not alone has become one of life’s greatest joys. A text message from a friend or a letter in the post can turn a horrendous day into a day worth living through.
But my experience is just a drop in the ocean. There are thousands of people in this country also suffering with Severe M.E and Very Severe M.E and many of them are going through hell as I write this. I have friends who are tube fed, who cannot talk at all, who have seizures or have episodes of paralysis. And then there are those who have lost their lives to M.E. They are the reason those of us who have the ability use the little energy we do have to fight for awareness. They are the ones who should never be forgotten.