Last year, on a bright February day, I had the best day of my life. I married the man of my dreams in a wonderful ceremony with all my closest friends and family around me. It was perfection.
I had spent 11 months planning this day down to the last detail, my husband was heavily involved, but I loved the planning so much I didn’t mind taking on the lion’s share. I did this whilst finding a new job for me and a new house for us both in a nicer area of the city to start our married life. It was a hectic time for me, but I enjoyed it and started to worry what I would do after it was all over. What would I spend my time doing once the dust was settled? Little did I know that life had something in store for me.
We only had enough money for the wedding, so we decided we’d book a mini break straight after the big day and then save up again for a proper honeymoon later in the year. We booked 4 nights in an old hall in Yorkshire, just the two of us, holed up in the Yorkshire moors, no TV, no WIFI –- how utterly romantic!
Nope. Not in February. Not when it’s -10C out and there’s no heating. Buildings built in the 18th Century aren’t known for their energy conservation either. It said there was a fire place but provided no fuel for it and we couldn’t find any locally. By the time we headed home, we both had developed quite horrible Flu.
I haven’t felt well since.
After taking so much time off work with the wedding and knowing I would be asking for more time off for our big honeymoon later in the year, I forced my sorry self back to work and pressed on through the Flu. The cough and cold eventually went but I never felt quite right. Then I started getting dizzy and falling over or fainting, especially at the end of long weeks or tiring days.
After a long diagnosis period including some misdiagnosis and a change in doctors, it turned out I have M.E., Myalgic Encephalomyelitis, also known as CFS or Chronic Fatigue Syndrome. It’s not just dizziness, it’s all over chronic pain, especially in my legs, arms and hands. It’s a never ending tiredness that saps me dry, beyond anything you’ve felt before, so tired you can’t fight gravity or move your arms and legs and head and you feel you’re being squashed flat. When you expend any energy, physical, mental or emotional energy, you get what’s commonly called “payback:” you become more tired than you should from the activity, and for longer. For example, if I run upstairs, that guarantees me half a day on the sofa, trying to recover.
Sleep -– once my ever present friend, my sweet sanctuary, my favourite weekend activity -- it is now the enemy. It either never comes or leaves me feeling worse when I wake up. It’s called “unrefreshing sleep” and is a classic symptom. When you’re so tired you can’t think or function or look after yourself, you’d think sleep would be all you need, you try napping, but you feel so groggy and awful and achy and “unrefreshed” it’s just not worth it.
One of the things that isn’t talked about much in relation to ME is what it’s does to your looks. Some might think that it’s inconsequential to the rest of it, and it’s generally overlooked in all the guidance and advice that’s available out there, but it’s devastating to my self-esteem. When I have crashes and bad days, my hair noticeably thins out –- my thick, lustrous red hair falls out in scary amounts, mostly at the top and the front making me feel very Walder Frey.
I know, in my head, that I have a lot of hair, and this is hardly noticeable to the casual observer, and that it grows back if I avoid crashing, but tell that to my heart which is wounded every time I glimpse scalp. On top of this, I no longer get compliments that I look young for my age, I now look every single one of my 32 years, and probably a bit more –- my skin is greyer and more wrinkly, it sags when I’m tired -– which is all the time.
My waistline is ever expanding too. After being too tired to eat a few times and crashing hard, I have an instinctive fear of being hungry. This combined with the easy, instant energy hit you get from chocolate is a terrible combination. My brain knows it’s bad, but sometimes I’m too tired to fight it. I’m learning ways to eat better, aiming for a low GI diet and just something as simple as switching to porridge for breakfast has made a difference. However, it’s a long slow journey, and the damage has been done. I was always a curvy girl and I loved my curves, I was voluptuous and I worked it. Now, I’m headed toward doughy and heavy and there’s very little I can do about it in the short term.
The worst though is what it’s done to my poor, weary brain. I have a degree in Maths and Philosophy, I pride myself on my intelligence and logical thinking. Or at least I used to. That’s all gone out the window. I used to like to say I thought in straight lines -– zapping from thought to thought, everything crystalline and smooth running. Now my brain is a murky fog, I spend so long trying to recall things, I will be speaking and words will completely disappear. I’m used to it now and I talk around it until the words appear, but it’s bloody terrifying when you first start to notice it and it becomes a regular event. I’ve lost job opportunities because of it and I’m so aware I’m not the fun, confident person I used to be.
My mission has been to be well enough to go to work. My evenings and weekends are spent on the sofa recuperating and trying to save my energy for when I need it. All activity has been reduced to a bare minimum, no shopping, no day trips and any socialising is negotiated and bargained for –- Yes I’ll come out, but only for an hour, and only one place, no bar hopping for me. At least my nights are always early and my hangovers minimal.
My husband, bless him, has been a tower of strength for me. Helping me endlessly, taking on all the housework and the cooking. He has been incredibly understanding. He knows that when I’m depressed and unhappy, or anxious and lashing out, that it’s not him, it’s my frustration at the illness. He has never complained and has helped me negotiate all the doctor’s appointments and the demands from HR. I could not ask more of him and I will never be able to repay his kindnesses.
I feel a tremendous amount of guilt around how he married a lively, chatty, funny woman who was always on, always planning the next adventure and now he’s my carer. He didn’t sign on for this, but I guess that’s what marriage is about. We will hopefully come through this stronger than before, and loving and laughing like always.
Now, I don’t want you to think this is a Woe Is Me type of story, I am so very aware that a lot of people have it a lot worse than me. I’m not dying, and even though I’m technically covered by the Disabilities Act in the UK, I feel like a fraud pulling the “I’m disabled” card with work when so many people have it so much worse than me. I just hope to raise awareness, not just for the people with CFS/ME but for all the other people who help care for the sufferers. It changes their lives, too.
I’ve signed up with a CFS/ME clinic and through that I’m learning pacing and gentle exercise, how to manage the stress and how to eat well to give me the energy I need to recover. It’s a disease that affects mostly women, and doesn’t kill people, so there’s very little funding into research and no known cure, but there are ways of sneaking up on the disease and getting better bit by bit, over time.
According to the National Institute for Clinical Excellence guidelines the majority of people are never expected to recover or return to normal, however I am utterly determined to return to my old way of life, or as damn close as I can get. I will start a family. I will get promotions at work. I will go on exciting holidays. And most importantly, I will be there for my husband if he ever needs me.