Tired All The Time by Deborah Mckno

01st August 2023

Deborah Mckno is forty-nine years old and she is not just tired – she has M.E.

I was 17 when my General Practitioner said, “You are just run down.” As well as having chronic tonsillitis, I felt as though I always had the flu. I would visit my doctor, who would prescribe antibiotics, informing me that I needed to be on them permanently. At 21 I had my tonsils out, and as I lay in the hospital sipping on ice-cold water, I envisaged a new life. Soon I’d be home and no longer stuck in bed poorly. Yippee! The tonsils are gone! No more antibiotics! I looked forward to a happy, healthy future.

The sore throats did stop; however, the fatigue and multiple vague symptoms remained, along with the fluey feeling and constant aching. I would still be in bed for a few days feeling very ill, only to recover and like clockwork, I would experience another flare a couple of weeks later.

Despite being a young mum, run down and having tummy issues, I had a good level of fitness and managed to cycle and walk each day. I kept on top of the housework and was a full-time mum to a very active toddler. Although I was always on the go, I knew deep down something was wrong.

I was in pain and felt weak. I had a raft of symptoms but didn’t understand why. I lived a healthy lifestyle but my body was failing me. I visited a herbalist who tested for parasites and took hair samples. I had food intolerance tests and did rotation and candida diets. I even lived on brown rice for a while. I was told I had nervous exhaustion and I just needed rest. I took the supplements he suggested and megavitamin therapy, but I still didn’t recover.

I tried most holistic therapies and even had spiritual healing. I should have been young and healthy but I was exhausted. I visited a private doctor who suggested I have my mercury fillings removed as I had a positive Kelmer test with 266% more mercury in my urine. That’s it!, I thought, I just need the mercury removed and I’ll be cured. I saw a specialist dentist and did chelation therapy, but nothing changed and my symptoms continued.

I was referred to an ear, nose and throat specialist. My tonsils had gone but now my sinuses were playing up! I left with carrier bags of antibiotics. Although I was reluctant to continue on constant antibiotics my doctor still stated I needed to be on them. So I listened; after all, he was a doctor, he knew best.

Eventually, I was told, “It’s just depression. You think you are in pain but you’re not. You’re just tired and run down.”

I was diagnosed with depression and irritable bowel syndrome, which confirmed that in my GP’s eyes, my symptoms were indeed psychological. I was refused life insurance at 23, as the GP told the insurers I was heading for a nervous breakdown. Back then, I thought my GP was helpful. I was young and naïve. He was almost retired and had no time for a neurotic young mother.

I had my second child, and I struggled through each day utterly exhausted. I would stand at the kitchen sink and fall asleep whilst washing the dishes. In the school playground, I was too tired to speak to other mums. I would walk up at the last minute to avoid chit-chat and conversations. My partner worked seven days a week on a farm. I was socially isolated as I lived in a village and didn’t drive. I was exhausted and just wanted to sleep, but no matter how much I slept, I never felt better.

Weeks started to turn into months and then suddenly I realise it’s been years. The flares have turned into daily battles, still with monthly bouts of flu-like illness, that each time take me longer to bounce back.

Life was a struggle but I managed to keep the kids fed and clothed. I never told anyone about my symptoms as I couldn’t explain them. Close friends and my partner knew, but for the most part, people just thought I chose not to work. I did take part-time jobs, and I even started my own little cleaning business in the village but had to give it up, as I repeatedly got shingles and would burn out time and time again.

So instead of talking to people, I suffered in silence, for many years too ashamed and crying behind closed doors. How could I explain what was wrong with me when doctors couldn’t? TATT – tired all the time – is what the doctor wrote on my medical records.

So that’s it, I was tired. Over the years, I was diagnosed with several other conditions, including anxiety, asthma and later, an underactive thyroid. I was put on thyroxine in 2009 and a nurse told me I would recover. That’s it! It’s my thyroid and these daily little thyroxine pills will cure me. They didn’t and my symptoms continued.

Each year passed by and I was prescribed more pills, and got more diagnoses and my medical file got bigger and bigger. In 2011 my mobility deteriorated; I struggled to rise from a chair, and walking became painful. I was diagnosed with Vitamin D deficiency. “You need injections,” said the GP; he injected me and said, “You will feel better now.” I continued having injections and they did help but my symptoms continued.

I took an exhaustive list of symptoms to my GP and he looked worried. He sent me to a neurologist and I had an MRI scan. Thankfully, there were no lesions on my brain and I didn’t have multiple sclerosis. My GP, puzzled, seemed determined to help me by this point.

Finally, I saw a rheumatologist, and after reading my notes he diagnosed me with fibromyalgia. I remember the date – January 5th, 2012. Yes, my symptoms were real. The pain was real, from the flashes of burning and the electric shocks that jolted through my body; so was losing my balance, severe nausea, muscle spasms, bladder problems and not being able to string a sentence together. It wasn’t just in my head. I wasn’t mad. It was real.

It had been an eighteen-year-long battle for a diagnosis of fibromyalgia. The GP apologised to me on behalf of the National Health Service. I was relieved I could finally tell people what was wrong with me. At last, someone believed me.

Six years later, in 2018, I saw a sympathetic endocrinologist regarding my hypothyroidism. He listened to me and stated it was not just my thyroid and he referred me to his colleague who specialised in M.E.

The M.E. specialist had read my file and was shocked, stating that she would have diagnosed me with M.E. within three to six months. I cried. It had taken twenty-four years to see her. It was 1994 when I first went to the doctor feeling exhausted. I knew that I was not just tired. I knew I did not just have fatigue. M.E. is a debilitating neurological condition with an exhaustive list of symptoms. Finally, the jigsaw was complete.

All those years, in fact, all my adult life, spent thinking I must be a hypochondriac or lazy or just depressed, or simply just tired and run down. All those years of doubting myself, sinking further into depression, thinking it was all in my head. Finally, I felt recognised, although the trauma of living with no diagnosis has taken a toll on my mental health, finances and my family.

All those years, I kept things hidden and was afraid of ridicule. I was ashamed. I felt that everyone had doubted me over the years.

Although the battle is far from over. Not being diagnosed for many years has had a significant impact on my life, especially my mental health and confidence. I still struggle to come to terms with the fact that I suffered needlessly for nearly twenty years due to not having a diagnosis.

My illnesses are invisible but the symptoms are not. Living every day with M.E. and chronic pain is not easy. How can I explain that brushing my teeth hurts or having a shower exhausts me? That sometimes my whole body feels like it’s vibrating and the ringing in my ears is unbearable? At times I choke as it hurts even to swallow as my muscles are too weak and in spasm. That a gentle friendly tap on my arm feels like I’ve been punched. Or that I stand in my kitchen crying because my hands won’t work and I cannot make a meal. Stress is the worst; anything that upsets me can set me back weeks.

The most worrying things though are the brain symptoms. I forget to turn things off. Sometimes I can’t remember how to spell. I get mixed up and I am often confused. I say the wrong words. I often get appointments mixed up, and I sometimes can’t even remember how to operate my washing machine.

These symptoms are invisible, as am I. Too exhausted to participate in life, stuck inside my home. I sometimes struggle to do even the simplest of tasks. I can no longer drive and have to rely on carers to help me. I rarely go out; I watch the world go by from my daybed.

If I do leave the house, I wear sunglasses. As I scoop up my bag of pills and potions I always remember to take my Rescue Remedy and medical alert card. I take my motion sickness pills for nausea. As I hobble to the car I joke that I am Miss Daisy and my friend is the chauffeuse. My friend is very helpful and a great carer. She has known me for nearly thirty years; she understands, and has seen the decline in my health. She too has sobbed; it’s not only me that misses me. M.E. impacts not only our family but friends, and many friendships are lost. There are so many losses and so much grief along the way.

I walk around the supermarket dazed and confused. My friend is my body as she lifts and reaches for me. It still exhausts me. My brain becomes overstimulated, overloaded and overwhelmed. Mostly I shop online but I am trying to get out more, whilst I can. However, the exhaustion of getting ready is a barrier. Even living with moderate M.E. is severely disabling.

Luckily, I have some good days and I try to be positive, but sometimes it’s just all too much. There is no cure for M.E. We warriors must pace ourselves and fight our symptoms every single day. We may look okay but sometimes we are not. I feel so sad that I lost almost twenty years of my life, not knowing what was wrong with me. I’m still struggling with my symptoms, but at least now I can make sense of everything, and I know I am not “just tired”.

Even today, with all the research, some GPs are still doubtful, and many still treat M.E. as if it is a psychological illness or think that it’s just fatigue.

I still get upset and cry and shut myself off from people. I still sometimes find it hard to ask for and accept help. On the positive side, I laugh and I make people smile with my daily “faux pas” as I like to call them. I never seem to be able to close the fridge door or remember to bring the milk in. I forget my passwords before I can write them down and I generally wonder how I manage to survive! But of course, I couldn’t manage everything by myself, and that is sometimes the hardest part. Feeling a burden and knowing that I will never recover. I will always need help and am reliant on others.

Although my life is not what I thought it would be, it’s okay. I have three cats that keep me company and they don’t mind if I live my life in a kaftan, or that my hair is forever in a bun and I have to spend my life in a daybed.

My name is Debbie. I am forty-nine years old, and I’m not just tired. I have Myalgic Encephalomyelitis.