As this is my first blog for 2022 I want to wish you all a HAPPY NEW YEAR.
It will soon be 20 years since I first started to become ill with M.E. (Myalgic Encephalomyelitis).
Many people with M.E. can recall the time when they first became ill, sometimes even the exact day. For me it was in the Spring of 2002. Like others I'm calling it my M.E. anniversary.
In this blog I want to look back and share with you my journey, some of my suffering and loss that I've undergone in 20 years. I will be referring to my previous blogs and illustrating with some of the many poems that I've written.
First of all you can look back to HOW IT ALL BEGAN in my blog 'My story for M.E. Awareness week'
20 years ago I was facing much DISBELIEF. When I first started to become unwell I had no idea what was wrong with me. During 2002 and 2003 I desperately fought to stay in unemployment which caused me much stress and worry. During that time I faced much disbelief from my doctor, my family and some friends. I suppose I even faced doubt myself and wondered if I was imagining things or going crazy. Throughout 20 years of being ill I've faced a lot of disbelief, ignorance and lack of understanding. It still continues to this day.
Over 20 years I've undergone so many MEDICAL TESTS AND EXAMINATIONS. Right from the very beginning I faced a barrage of questions, interrogation, never ending examinations and tests. I've lost count of how many blood tests that I've done which usually came back as showing nothing serious, apart from once a low vitamin D level. I've made countless visits to the doctors and hospitals, both in the UK and in France where I've been prodded, poked and harassed. I've suffered the ordeal of a colonoscopy, an endoscopy and a full hysterectomy. I've been psycho-analysed to see if I'm of sane mind. I've even spent a week in a pain clinic where I was totally disbelieved and forced to undergo physical exercise which put me into a relapse. You can read about one of my medicals in this blog 'The Medical' written in October 2016
Over 20 years I've tried DIFFERENT MEDICATIONS. Twice I was prescribed anti depressants, despite declaring that I was definitely not depressed. I couldn't tolerate the medications and stopped them very rapidly. Different doctors have proposed medications but after two bad experiences I've refused any more. Like many others with M.E. I'm sensitive to most medications.
Over 20 years I've tried many different SUPPLEMENTS,VITAMINS AND MINERALS to see if they would make a difference. Perhaps the best is vitamin C and vitamin D but the rest seem to have made little or no difference apart from causing a hole in my pocket!!
Over 20 years I think that I've read about or tried many different ALTERNATIVE TREATMENTS & DIFFERENT THERAPIES. This includes Graded Exercise Therapy, Cognitive Behavioural Therapy, Yoga, meditation, Tai Chi, massage, visited a 'toucher' or 'healer', Emotional Freedom Technique, Lightning Therapy, treatment with electrodes, heat therapy with pads and cushions - the list goes on! Some have helped a little and others downright dangerous.
Throughout 20 years I've suffered SO MANY SYMPTOMS. There are too many to list here but you can read about them in my previous blog 'So many symptoms' .
Over 20 years the one symptom that is here with me every single day is PAIN. I don't think there is one part of my body where I haven't suffered pain at one time or another.
Over 20 years I've become increasingly SENSITIVE AND INTOLERANT to so many things. You can read more about it in my blog 'So sensitive'
In 20 years I've suffered many RELAPSES and P.E.M. (post exertional malaise) is a defining part of my illness and my life. I've written a couple of blogs about this 'Rest and relapses' in August 2015 and again in January 2020 'Relapse'
In 20 years I've seen so much LOSS because of my illness. I've lost my job and career, my house and my home, my security, my social life, my many pleasures and hobbies. I've lost hope. I've lost my life as it used to be. Here is my previous blog about 'Loss'
During 20 years I've had some moments of HOPE during periods of a slightly improved level of health. I've wondered if at last I was on the road to recovery. However, I'm just fooled and the illness comes back with a vengeance. You can read about this in my blog of September 2016 'Don't be fooled' It's a false sense of hope. This illness is relentless and full recovery is extremely rare.
In 20 years I've had to face A NEVER ENDING CONSTANT BATTLE FOR BENEFITS to prove that I'm really ill and not faking it. I've had to prove myself and my illness over and over again. I've filled in countless pages and forms in English and French in an attempt to explain and prove that I'm genuinely ill and unable to work. It has caused me enormous stress and anguish.
Over 20 years I've wanted to GIVE UP THE FIGHT. It's been a constant battle and struggle mostly on my own with little help or support. It's pushed me to the edge and to the point of taking my life. So many do give up and suicide is seen as the only way out. This has happened to some of my dear friends. You can read the story of Lotta in my blog 'Losing a loved one to illness'.
In 20 years I've had to reach some ACCEPTANCE of my illness and that my life can not go back to the way it was. I've had to find a new way of living, a new life and new interests. Life goes on even if you feel like you are dying at times. Perhaps I've been luckier than some as I had a chance to start over in a new country with a new husband. At first it helped me but soon became with fraught with problems and difficulties. I found that in France there was even less understanding and knowledge of my illness than the UK. I did eventually find a doctor who had some understanding and he helped me to review all my health issues. You can read my blog 'Turning the negative into the positive'
Over 20 years I've had to LEARN AND UNDERSTAND about this illness myself. At first it was difficult as I didn't have access to a computer and social media. I searched through the local library and bookshops. My doctors knew next to nothing. Their advice, help and treatment was very limited. It has become easier over the years with so much more information available on the internet. I suppose I've become my own self expert. When I registered with my last doctor it was me who gave her information about M.E.
In more recent years I've been writing MY BLOG AND POEMS about M.E. This has helped me and given me sense of purpose whilst at the same time hopefully helping others who suffer the same as myself. You can read about why I write poetry in the following blogs 'Why write poetry about M.E.' 'Why I write about poetry (part two)' 'Meet the author'
Over the 20 years I've found NEW FRIENDS in the M.E. community. There is wonderful support, help and friendship.
Next month I will be reaching retirement age. I never imagined that my life would be like this. I never imagined that I would be ill for one third of my life. I thought that I would recover but I have never done so. This illness is here with me every single day. The only small compensation on arriving at retirement age is that I will no longer have to fight for recognition as disabled and the right to disability benefits. I will no longer be under that constant pressure to prove that I'm really sick and unable to work. The down side is that health deteriorates naturally with age so I'm never going to go back to the way I was over 20 years ago.
I'm a survivor and a M.E. WARRIOR. We are all M.E. warriors.
The French Femme