My Chronic Illness Story And How You Can Help
May is ME Awareness Month and once again I am participating in the virtual campaigns online to help raise awareness of this life-destroying illness called Myalgic Encephalomyelitis. Today I'm sharing my story. How did I become so terribly ill and housebound? How did it happen? When? And how long did I have to wait for a diagnosis? Here's my ME story:
I had a very busy and active life, teaching, going to church and Bible studies, tutoring and babysitting after hours and holidays abroad.
In 2014 I started getting pains all over and picking up every bug that went round. Doctors couldn't tell me why I was in so much pain, they couldn't find anything in the blood and urine tests they did. So they sent me home with over the counter painkillers.
My Lifestyle Changes
I thought that I was probably just unfit and I was certainly overweight. I knew I had food intolerances, but I'd ignored them for years because I loved food too much. So in the new year I decided to start taking my health seriously - to clean up my diet, eliminate my trigger foods and start exercising regularly.
I loved my new lifestyle, I had lost weight, felt more energetic, started dance classes and took up Taebo again, I even started cycling again and did my first 14 mile charity walk. I was so happy and my confidence grew. I took on more work too, running after-school clubs for the children.
Unfortunately it all started weighing on me. I was getting so tired and often had headaches or sore throat and those shooting pains were still making an appearance. I decided it was time to cut back on all the work and in the new term I was going to let go of some of the after school activities I had been doing.
Easter 2015 - Onset Of Post Viral Fatigue
But then, on my Easter holiday in Italy, I was out cycling with Dad when I lost my voice, and by evening I had a terrible earache and sore throat. So I went to bed that night, 1 April 2015, and I'm still in bed years later.
Of course I'd go out on days I felt better thinking the virus had finally run its course, but I'd start shaking or become weak and exhausted after just a couple of hours. I could no longer function at full capacity. The infection just wouldn't clear up and it was draining the life out of me.
Doctors, Sick Leave and Unemployment
I initially went to doctors in Italy and then again once I had returned to London. They both said it was just an infection, but after 2 courses of antibiotics it just got worse. The ear and throat infection lasted for over a month. I was weak and shaking constantly.
Every time I thought I was better, I'd go in to work and within a few hours I'd be exhausted, in so much pain, with really bad headaches and light sensitivity. I would go sleep in the dark sensory room at work (a primary school) until somebody could take me home.
I ended up staying home for the rest of the year and lost my job in December - I was simply unable to leave the house without detrimental effects to my condition.
I continued to deteriorate despite eating a clean and healthy paleo diet, and giving my body plenty of rest.
Initially the doctors mentioned Post Viral Fatigue syndrome and told me it should go away within a few weeks to a few months. As the months went by, I saw new doctors and still nobody knew what was wrong until one day a doctor mentioned Chronic Fatigue Syndrome and referred me to a specialist clinic.
This doctor then left the practice and I had to see yet another doctor for a new referral as nothing came of the previous one. Diagnosis wasn't quick or easy, it was about 5/6 months before I had confirmation from the clinic that what I had was Chronic Fatigue Syndrome. I wasn't happy with the name, I knew it was way worse than fatigue, so I Googled and came accross Myalgic Encephalomyelitis which is often also referred to as Chronic Fatigue Syndrome - ME was a perfect fit for what I was experiencing.
Unfortunately a diagnosis didn't mean answers. My doctors weren't able to help me and they even gave me advice that made me wose.
At Christmas my sister came over for the holidays as I was too ill to travel to the family as I had planned to, but when she saw how ill I was, she cancelled her return flight and remained to be my full time carer. She still is to this day.
By the start of 2017 I was almost completely debridden, struggling to walk 7 steps to the toilet, bathing once a week and unable to tolerate people around me without severe repercussions.
Getting up, even sitting upright, caused incredible weakness, heart racing, pain all over and walking just short distances caused physical shaking and trembling as well as burning pain. I was often unable to hold my phone or colour with a pencil. I just lay in bed waiting for relief.
The Effects Of Myalgic Encephalomyelitis
The effects of any mental, emotional or physical exertion (so even getting excited for a visitor, picking up my laptop, brushing my teeth or typing this message) can cause an increase in heart rate comparable to a healthy person doing a cardio workout, I pass my anaerobic threshold and lactic acid is released. You know the burn you feel when you've run a race? I get that from standing up for more than 3 minutes.
When that happens there is an increase in all my symptoms and the effects can last for hours. If the exertion is bigger, like a shower or a doctors appointment, I am confined to bed for days or weeks respectively. That's why I no longer leave the house unless it's absolutely necessary because no trip is worth the deterioration and I still only shower once a week so that I can have a couple of days feeling a bit better before my next shower and the payback that comes with it.
Noise sensitivity and light sensitivity mean that we live in a silent, darkened house for much of the time. My screens are dimmed and I wear tinted glasses and noise cancelling headphones or ear plugs daily. Noise and light cause throbbing and shooting pains through my whole body. And light seems to drain my energy too. It's as if somebody pulled the plug and I can feel all my energy just drain out through my feet.
Functioning With An Energy Deficit
There is a misconception that we are just tired or lazy, nothing can be further from the truth. Fatigue is the very least of our problems. As my illness has progressed, I am less fatigued and more wired and weak. Every been so weak you can't even move from a sitting position to a lying down postiion on the sofa without help?
In the beginning I'd sleep all day and night, then insomnia hit and I'd struggle to sleep at night, but now I sleep through most nights and no longer need naps in the day, but my mind is racing constantly, it's a wired feeling, like the rush you get from a rollercoaster ride. It's fun for a few minutes, but when it's constant, it's exhausting. I get weak, shaky and in pain, but not tired unless I didn't sleep enough.
This exhaustion is not tiredness, but a lack of energy at a cellular level. When each cell in your body is fighting to get the fuel is needs to function, it's no wonder the body starts shutting down. That's why even basic functions like digestion drain my energy completely and I often pass out after a meal as my body just cannot keep my awake while it's digesting.
People with ME/CFS are often high achievers, go getters who try everything they can to get better. They spend their limited energy researching and trying any possible solution that might provide relief or improvement. The nature of this illness means that these very driven people are trapped or imprisoned in their own bodies that can no longer do the most basic tasks.
We are missing from jobs we loved, social lives, hobbies, contributing to society, going to church, taking care of or even starting families.
Brain Fog - Cognitive Dysfunction
Cognitive dysfunction is a common symptom that fluctuates unpredictably. Right now I'm able to type this message, but sometimes, like earlier today, I can't understand English or string a sentence together and random words come out.
Thinking of words or answers to questions or trying to maintain a conversation requires a lot of brain power which healthy people don't realise, but you might have experienced something similar if you've every been deprived of sleep for 48 hours or more. Slurred speech, difficulty concentrating and following conversation. The brain usses a lot of energy. This means that even things like reading and chatting with family and friends can be impossible or detrimental to our health. Causing more isolation.
Why Do I Talk About ME So Much?
ME, being a neurological condition, affects every part of my body and my daily life. There is not a single thing I do that is not affected and will not affect me. It's impossible to not be aware of it and consider it regularly without risking to overstep my limits and cause a massive crash. I have tried. You cannot pretend you don't have it. It quickly reminds you that it's still there.
ME is not a rare disease either. It is twice as common as MS and comparably disabling, even more so in the more severe cases where patients are paralysed and tube fed. Yet funding is a fraction of what MS gets (just a few dollars per patient per year) and even research into hay-fever and balding get more funding than ME. This is a global problem. There are millions of us missing from our lives. Trapped in a living death.
We also tend to develop secondary conditions like orthostatic intolerance which is an inability of the heart to regulate blood pressure and flow when upright, causing dizziness and fainting and EDS which is a connective tissue disorder causing weak joints and dislocations among other things.
The Problem - Why We Need Your Help
We are too ill to fight and advocate, though we do use all our energy to try, and many risk serious deterioration in order to raise awareness and share their stories. Whether in person or online. So we become invisible and forgotten. The most severe living in constant torment, utterly neglected by the healthcare systems that should be taking care of them.
I am blessed with an understanding family, but many patients are shunned and left to manage alone when they can barely get out of bed. There are patients dying in isolation, in dark rooms, alone because of stigma, neglect, being abandoned by family and friends because the doctor couldn't find anything wrong... Some of them have been battling alone for decades. It is heart breaking. The harm must end.
Doctors can't help us, apart from suppressing a few symptoms like some of the pain or help us get some sleep (insomnia is common), many doctors don't know anything about the illness and hospitals are more damaging than helpful with bright lights, noise and chemicals for cleaning... Most staff have never heard of ME/CFS and are ill-equipped to help patients.
We need medical professionals to be trained, we need sufficient funding for biomedical research, we need governments worldwide to take notice and make this a priority. We want to get back to work and living life again.
This illness is classified by WHO as neurological. As such, it affects every body system. Scientists have found abnormalities in the brain, digestive system, muscle function and recovery, circulation, mitochondria and plasma. There is exciting research being done, but it's slow due to lack of funding. We need more research funds so proper tests can be developed and treatments will be more effective.
We could really use the help of able bodied allies to take up our cause, write to decision makers, raise awareness, fundraise and educate others. We need you to help amplify our voices and help us to be seen and heard.
How To Help
Details on how you can help patients worldwide here, I've put together an extensive list of advocacy ideas and resources to help you help us.
* A version of this post was originally published on Instagram on 24 May 2018