'˜Sometimes it's even too painful to brush my hair'
On 13th October 1999 my life became unrecognisable.
I went from being fit and healthy, able to work full-time as a schools meals organiser, look after my family and enjoy an active social life, to being completely bed-bound from an illness I had never heard of.
I woke up with felt like a bad flu with food poisoning on top. I thought it was just a ‘tummy bug’ and I’d be better in a few days. As the days turned into weeks, my worried family then called our GP for a home visit.
I was nauseated, dizzy and weak, unable to stand upright, daylight somehow hurt my eyes and any noise made the symptoms much worse. It felt as if my brain was inflamed and there was lead travelling around my veins, making it almost impossible to move or hold a conversation.
One minute I was shivering cold then sweating profusely. I seemed to be living in some sort of hazy fog as my memory was affected and I couldn’t understand words in a book or newspaper or even follow a story in a television programme. I also suffered very frightening transient paralysis.
Seventeen years later, I remain severely debilitated by Myalgic Encephalomyelitis (ME).
My supportive GP suspected I was suffering Viral Labyrinthitis. Many blood tests later, still, nothing abnormal showed up after having almost every organ in my body tested, prodded and scanned and I honestly thought I was going insane. How was this possible when I felt like I was dying and it also looked that way from the massive weight loss I’d suffered from being too ill to even eat.
One day, after having suffered yet another period of paralysis my GP was called to my home, I remember him standing beside my bed and saying “I’m sorry, I had hoped we were not looking at severe ME but I now believe this is the case, there is no one I could send you to and there is no treatment.”
Although I didn’t believe the hopelessness of the situation at that time, I was soon to learn. Not only was there no ME specialist, effective treatment or cure, I was to also be faced with disbelief from many medical professionals I later turned to for help.
In sheer desperation, I then turned to alternative therapies, private clinics and handed over vast sums of money to many who promised a ‘cure.’ On hindsight, the world’s top scientists can’t cure ME, yet desperate patients will gladly be parted from their money to anybody who claims they can offer relief and many charlatans still do!
Eventually, a social worker was sent to access my helpless state of health, she told me ME was a mental health condition and I would get better with antidepressants but didn’t qualify for help as my family were able to care for me.
Another NHS consultant recommended antidepressants and although I knew I was not depressed, I was extremely frustrated to find help, I dutifully tried these mood modifying drugs but to no avail.
I still didn’t know the true facts about the disease so I agreed to cognitive behavioural therapy at home. The therapist told me I just needed to get out of bed more and learned me some relaxation techniques.
After many CBT sessions and unfortunately for the therapist, his questions on childhood traumas and past levels of stress did not account for my levels of physical disease, I was no better, in fact I was worse from the efforts of getting up for his visits!
Approximately eight months of complete bedrest, I gradually began to feel a bit better. Each day I could get up a little longer and as the months passed I eventually decided I was just about able to go back to my job.
I still had the nausea and dizziness but after much trial and error, my excellent GP had found medications to keep these symptoms just about bearable.
The exhaustion had improved too so my belief at the time, was I could get fitter if I went back to work after of a year not being able to do anything. It was amazing to get back my career and friends and be able to take part in life again, although it meant spending most of my time off resting to try to get the energy to keep going.
I soon discovered trying to ‘fight off’ ME or think positive thoughts does NOT work and after three attempts to return to work, I suffered a massive relapse which plunged me into another seven years of severe ME and the damage is now irreversible.
I also developed severe headaches and pain in my muscles, my joints often just ‘give way’, sometimes even my skin hurts and it’s just too painful to even brush my hair.
I then received a further diagnosis of fibromyalgia and postural orthostatic tachycardia syndrome (POTS)
I have spent many, many years of relentless suffering and contemplating the situation and I made a pledge to myself that if I ever improved enough to do anything, it would be to fight for the truth about this disease and use my experience to somehow help others.
In 2009 I was given a laptop for my birthday, I began to educate myself on ME and quickly discovered reliable resources of information.
I learned how to manage the disease, to pace all activities and to keep within my severely restricted energy levels. I learned lying flat using the laptop, saved physically energy which allowed my brain to function better and over the next two years working on my ideas, I was eventually able to set up a patient support group in Newry in April 2011.
With a massive amount of help and support from my family and after finding other like-minded and determined ME patients, we began a very successful awareness and education campaign.
I measure that success by the large numbers of both patients and medical professionals who are contacting the charity for help and reliable information.
We obtained charitable status in 2014 and with today’s technology, I have found it’s even possible to organise entire conferences from my bed, bringing international ME experts to Northern Ireland to educate the masses!
On the odd occasions when I’m able to go out, I often meet friends who congratulate me on my ‘recovery’ but little do they know I’ll be trapped in the bed again after the effort of actually getting out for a few hours.
Others will often say they too have ME as they’re feeling tired, I’ve learned to save energy on explaining that feeling tired has absolutely nothing in common with the devastating symptoms of neurological Myalgia Encephalomyelitis, I just nod and hand them an information leaflet.
I have learned many things since 2009, one being, not to blame healthcare professionals for the lack of understanding and sometimes their disbelief of the severity of ME.
A FOIA (Freedom of Information Act) reply I submitted to NI medical training agencies, states doctors are not given any specific education on neurological ME and are therefore as susceptible as the general public to the misinformation and scepticism surrounding this disease.
Although I remain mostly bed-bound, I am grateful to have improved enough to be upright for a couple of hours on really ‘good’ days. I have had to learn to use these small amounts of energy wisely as the cost of trying to push through the symptoms results in more suffering and a further decline.
I may function at a snail’s pace but to be able to play a small part in the world again gives me a sense of purpose and I’ve learned to focus on what I CAN do, no matter how small, rather than on what I can’t do.
2017 offers great hope, as scientists around the globe get closer to producing a diagnostic test and effective treatment for the 17 million ME patients worldwide.
In the meantime, HOPE 4 ME & Fibro NI will continue to lobby health commissioners and decision makers to provide a dedicated NHS ME Clinical Consultant. Our surveys of GPs also showed doctors were not confident in offering a diagnosis of ME and would prefer to send suspected cases to a clinical Consultant.
Early diagnosis and the correct self management advice of enforced bedrest and symptom management control, has been proven to give patients the best chance of improvement and would hopefully save others from having to go through decades of this nightmare illness without the support they deserve and is given to all other major chronic diseases.
*For more information about Hope 4 ME and Fibro, phone: 07712 892834 (2-4pm only), email: [email protected], website: hope4mefibro.org