Nineteen Years and Counting – A ME/CFS Story of Perseverance From Tasha
My Shrinking Life – 19 years and Counting …. and Still Hopeful of a Reprieve! – Tasha’s Story
This is a long and involved story of my journey with M.E. The reason behind it is to show the problems I’ve encountered dealing both with the illness itself and the medical profession which I am sure has contributed to the disabling symptoms I experience and longevity of my illness. I hope this gives a picture of what it’s like to learning to live with M.E. and the repercussions this illness can have.
The Set Up?
I can remember the exact day my first symptom of M.E. appeared, where I was and what I experienced. I had been through some very difficult health problems for several years, including many major gynaecological operations and then at 35 years old, surgery and treatment for breast cancer. I had always bounced back and led a very full and busy life.
Eight months after a serious operation for a ruptured ovarian cyst and prolapsed bladder, I went , at the age of 37, on a cruise. It was a disaster as after contracting the Norwalk virus I had to be taken off the ship and put in hospital abroad. I was so violently sick that when I returned home I had to undergo a hernia operation. Six weeks later at a routine breast check another suspicious lump was found and I had to undergo surgery to have it removed. The pathology report came back that it was clear of cancer and had only been an enlarged breast cyst.
The Pain Begins
Three months after that operation that we went on an activity holiday. I was 38 years old. The first few days were fine. I felt I was getting back to my old self and enjoyed playing tennis, swimming and cycling.
The last day we were there, though, I woke up with a strange pain in one finger on my left hand, as if it was badly bruised. It felt like a hot steel rod was being pushed along the bone. I’d never felt a pain like it before. I thought it was odd and assumed I must have somehow, inadvertently, damaged it. The pain lasted for several hours and then just went and I thought nothing more about it until a couple of days later, when we were home, and I had the exact same pain in one of my toes. I thought it was very peculiar. Again the sensations only lasted a few hours and then went.
As the weeks passed I had several more of these odd pains in random places throughout my body: my upper arms, my shoulders, my hips, my knees. Sometimes they would last for several hours but at other times they would be fleeting and within minutes the pains would be elsewhere.
I had started to play squash and remember after one game having such excruciating pain in my upper left arm and left hand that when I drove home I could barely even hold the steering wheel of the car. At first I thought I had strained myself playing squash, but then realised the pain was in my left arm and hand and I played right handed.
The Exhaustion and Brain Fog Kicks In
The day after that I felt exhausted and struggled to get through the day at work. I felt as if I was coming down with the flu. I took a couple of days off work and rested and began to feel better so went back to work. The pains became much worse over the next few weeks and frighteningly my doctor considered that my breast cancer may have spread to the bones. I was sent to see an oncologist and she thought that my symptoms may well be attributed to secondary bone cancer and I was sent for a full body scan. Thankfully the results were clear, but no-one seemed to have any idea what could be causing the pains.
Over the course of a few months the feelings of a flu-like illness became more prevalent and continuous. I began to feel very weak with very little energy and the pains became established as a permanent feature. I remember trying to get dressed for work with sweat pouring off me, every muscle in my body feeling bruised and my bones feeling crushed and shattered. My brain couldn’t decide what I should be wearing and I often couldn’t work out how to accomplish the simplest of tasks, for example how to put toothpaste on my toothbrush or even how to use my hairbrush. I would try to speak and my words would be a jumble of nonsense.
I couldn’t recall even the most basic information. I would look at a window and try desperately to retrieve the correct descriptive word from my brain but I could only describe it as ‘the thing in the wall that lets in light and you can open to get fresh air’. It was terrifying.
Although my symptoms of fatigue, widespread pain and brain fog started in 1994 it wasn’t until 1996 that I was diagnosed with M.E. Over that first couple of years, one by one, I gave up my hobbies, my sports and social life to try to have the energy to carry on working.
I was a financial director, a position that held great responsibility and required excellent accounting, organisational and communication skills. The symptoms continued to develop and gradually I had to reduce my working hours. My arms were dreadfully painful and had I no strength in them at all. I even had arm supports attached to my desk to try to be able to continue to use my computer keyboard. As I started to struggle with simple spellings and basic arithmetic I started making mistakes and had to hand much of my work over to an external firm of accountants. I became increasingly unable to organise my own work let alone the staff I managed.
An End to Work
It wasn’t until I reached the point where I was feeling dreadfully ill, virtually unable to walk, could hardly string a coherent sentence together and was losing my memory, (i.e. I couldn’t work out how to put on my computer and very frighteningly couldn’t even remember how to spell my own name) that I realised I had no choice but to stop work. I spent about 18 months virtually bed bound, often with not even the energy to lift a mug or pull my covers up. I needed help with getting in and out of bed, getting washed and, on the rare occasions when I felt well enough to get up, I needed help with both choosing my clothes and getting dressed.
Finally after two years of my GP telling me that he felt my symptoms were caused by stress and/or depression, my twin sister did some research and found information about M.E., which I had never heard of before, and suddenly my symptoms made sense. My GP was not at all happy sending me to see a consultant but eventually I was sent to see Professor John Tooke.
I explained the dreadfully sharp and painful sensations of red hot steel rods being pushed through my bones especially in my arms and legs. The feelings of intense heat in many of my joints, the feeling of having walked for miles when in reality I had walked just a few steps, dizziness, the lack of strength, the lack of stamina, overwhelming weakness, awful night sweats, the increasingly disabling headaches and migraines and the confusion that feels like my brain has become a bowl of mush. Professor Tooke listened carefully, examined me and confirmed the diagnosis of M.E.
I thought that once I had a diagnosis there would be some kind of medication or treatment available to get me well and back to my old life. Sadly in 17 years since that time I have found virtually no assistance available within the National Health Service (NHS). On too many occasions, I have been advised to accept that I am going to be disabled for the rest of my life and to stop looking for any kind of treatment etc. Over the years, the ME diagnosis has become complicated by diagnoses of fibromyalgia, hypertension, hypothyroidism, varying migraines and undifferentiated connective tissue disease.
Boom and Bust
Having received no help or advice from my GP on either how to treat or manage my illness, I existed in a downward spiral of boom and bust. After being in bed for so long I gradually began to feel slightly better. Then feeling guilty for doing so little, I tried to ‘catch up’, which resulted in further exhaustion and pain and again I would have no option but to go back to bed for several weeks.
I even tried returning to work part time on many occasions, which was about the worse thing I could have done, but didn’t realise it at the time. Just a few days of trying to be ‘normal’ would leave me dreadfully ill again. Each time the downtime would be far worse and longer than the previous episode. When you haven’t experienced chronic illness before you just assume that when you begin feel better you are actually recovering and it was a real shock to find that was not the case.
Managing ME/CFS Better
Thankfully in 1999 I found a charity, Westcare, which specifically helped people with M.E. It ran week long residential courses to offer advice and support. Specially tailored for patients with M.E. the courses allowed limited time for lessons and many rest periods throughout the day. Physiotherapists and occupational therapists taught us how important it was to learn our base activity levels and to gradually increase from them. I had to pay for this myself and spent the week learning about activity pacing, avoiding stress, the importance of having a positive outlook and of setting accomplishable goals.
On testing by the OT, it was found my base activity level was extremely low. No wonder I had been struggling! I took their advice and put into practise everything they had taught us. I was told that pacing was not a cure but could certainly help me to manage my severely limited energy more efficiently.
It took several months to increase my base activity levels to a point where I could manage to get dressed most days without increasing my symptoms. After about a year, with careful planning, I could sometimes manage to go out and have some quality of life. I began driving again, only short trips, but it meant I could enjoy a small amount of independence. I still couldn’t walk more than about 50 feet without being overcome with pain and fatigue so I had a wheelchair, but and had to be pushed. Eventually I invested in an electric scooter so that when I was well enough I could join my family on outings on my better days as the wheelchair was so limiting.
Every time I felt I was making progress something would come along and put me back to square one. Following my breast cancer I underwent further operations to remove suspicious lumps from my breasts and further gynaecological surgery to remove cysts on my pelvic wall. Each time the progress I made was lost and I had to start from scratch all over again.
I also went through dreadfully traumatic times at the end of 2001 when both my parents and my brother all died within three months and the repercussions on my health were awful. My activity levels again hit rock bottom when my marriage fell apart in 2004 and I had to start my pacing from base line.
I gradually improved over 18 months and started to really think that I might become well enough to think about working again, even if just part-time. I was able to get up and dressed every day and with careful planning could go to the local shops and even started being able to go for the occasional walk in the forest.
I had a GP at the time who considered that as I was making progress, albeit slowly, that I should increase my activity levels quite considerably. She sent me to a local gym to undertake structured physical exercise. I was assured that the staff at the gym would know exactly how to increase my stamina without causing harm. After three visits I could barely function and found myself back in bed for months. I was unable to walk more than a few steps and my mental abilities had decreased considerably. The pains in my arms and shoulders were so intense that after a few months we even sold my car as it was obvious I would not be able to drive for a long time. In the seven years since that time I have never got anywhere near back to where I was before I went along to the gym.
I had asked again and again for many years if I could attend a pain clinic and at last in 2006, a full ten years after being diagnosed, I finally had a GP who said she would arrange it. I was so excited and hopeful for an end or even a reduction to the all en-compassing daily pain. After waiting several months, I finally attended the clinic. The staff were wonderful, very supportive and caring, but having spent hours with various healthcare professionals, they advised me that they were unable to help.
They explained that the World Health Organisation viewed M.E. as a neurological illness, and because of my history of so many surgical procedures, and suffering with varying and fluctuating pains for too many years, in their opinion, my brain had now laid down memory pain routes throughout my body and that no amount of painkillers would therefore remove the pain. I was devastated and was driven back home in tears.
Having no choice but to rest for most of the time, I gradually became able to look at increasing my activities slowly and was making progress when, to add to my problems with M.E., I started suffering with increasingly disabling migraines with auras. I used to have ‘just’ the headache type of migraine, I say ‘just’ because they are awful – and they tend to strike just as I am waking up. The pain in my head is intense and I feel very sick and weak.
I cannot bear any light or any noise and I am unable to cope with getting my own medication. At times I have been unable to move my left at all. Often I am unable to speak and have had to just thump my husband to get him to wake up and help me. It is very frightening when I can’t say anything at all. It is as if I know I want to say something but nothing happens. I saw a neurologist recently who said it is actually part of the migraine aura. These migraines last for several hours and I am left feeling weak and not at all with it for a few days afterwards.
In spring 2008 I started to suffer with ‘silent migraines’, or what I have been told are sometimes referred to as vestibular migraines, which can come on within moments. The only warning I have is a tingling sensation in my legs that spreads upwards. I start to lose my normal vision and everything around me looks wonky. I have a sensation of spinning or falling which makes me feel very unstable and sick. Often I am unable to speak properly, if at all, which is very worrying if I need help. I have to become totally still and try and focus on something a long way off.
I have found that I have had to sit for several hours until this passes. Fortunately most of the times I get these silent migraines I am at home resting anyway, but they have happened when I have been out and the fear of not knowing how I am are going to cope is dreadful. They can be triggered by light patterns, light changes, fatigue and exacerbated by stress.
Family Stress Leads to a Setback
Then, in April 2009, my identical twin sister Christina had a brain haemorrhage followed by a massive stroke. She was in intensive care on full life support for a long time and then was in a neurological rehabilitation hospital for two years. The effect on my health was devastating. Yet again, I lost all the progress I had made, was severely limited and in constant pain. I had to limit my activity to just a couple of minutes a few times a day to be able to function at all and to try to ensure that I didn’t suffer a full relapse.
Very gradually , again I slowly built up my activity levels. It took an enormous amount of time to get back to being able to be up and dressed most days, and I had to plan my activities carefully, usually for just for a few minutes at a time before ensuring that I could rest to re-charge my batteries. I managed to start driving again, going out locally once or twice a week , just to visit a friend, but the feeling of independence was wonderful.
A New Kind of Migraine Begins
Since spring 2012 I have also started to get ocular migraines, sometimes with pain, sometimes without. Without warning I see sparkled patterns and more worryingly huge holes appear in my vision – just holes of dark nothingness. This phase usually lasts about 20 minutes and can make me feel quite sick.
Sometimes this type of migraine just passes, but more often now a full blown migraine headache develops shortly afterwards and I have to lie down in darkness and with no noise. These can take several hours to pass and always leave me with a strange weak and fuzzy feeling for a few days. My migraines, whatever guise they are, tend to come along in batches, several one after the other and then I may have a week or two respite before they start again.
I have been advised not to take my specialist migraine tablets unless I have the pain type migraines and just let the other types run their course. I am on increasing doses of propranolol to see if that will help decrease both the severity and regularity of my migraines, but so far it has not helped.
Connective Tissue Disease Kicks In
To add to this I also have increasing problems with undifferentiated connective tissue disease. Originally, back in 2001, I was diagnosed with lupus and Sjogren’s Syndrome, but that diagnosis has been changed in the last year. I have been told by my rheumatologist that I have an array of autoimmune problems and that is why they have changed the diagnosis.
Additional problems include disabling pain and stiffness caused by inflamed tendons, especially my feet and hands, which are different from those I’ve experienced with M.E. In 2002 I was prescribed anti-malarial drugs which helped with the pain, but unfortunately increased my dizziness to unsustainable levels. I cannot tolerate steroids and am now waiting to see what else they may be able to consider. One of the difficulties in dealing with autoimmune problems is that the very nature of the problem causes your body to over-react to substances, including hyper-sensitivity to many drugs.
Since August last year, when I had shingles, I have experienced an increase in the joint pain, muscle pains and fatigue and worsening migraines and dizziness. I can now only go out if I have someone to accompany me because of the migraines and cannot walk at all without experiencing severe pain in my feet. Even just walking from the house to the car is extremely painful as the soles of my feet are so tender.
After 19 years of disabling pain and fatigue I have been disappointed with the lack of specialist care I have been offered. I have repeatedly asked if I could be referred to an M.E. clinic. To begin with I was told that I hadn’t been ill long enough, then that there wasn’t the funding to send me, and now it appears that they won’t see me because of my thyroid problems. Sadly I have read that without intervention in the early stages of M.E. the chances of a recovery remain very slim. I had no idea back in the early days the dreadful damage I was doing by trying to get back to normal too soon.
If only I had been advised to stop everything and rest I often wonder if my life would have been very different.
My day to day life now is home based as I am virtually housebound. Rarely able to risk going out on my own I have no option but to rely on others for any outings, which due to my lack of energy and non-existent stamina, are few and far between. My work life came to an abrupt and permanent end when I was only 40 and my social life is almost non-existent. My dreams and aspirations are still on hold …. I haven’t totally given up on them, but with each passing year I find it harder and harder to remain optimistic.
I feel forgotten by the health system within the UK and misunderstood by almost everyone else. The media coverage of M.E. (CFS) has not helped with the references to yuppie flu and Malingerers Excuse which were made several years ago.
The name itself, chronic fatigue syndrome, hasn’t helped either. People mainly assume that I just feel tired and that a good night’s sleep will make everything right again. If I had £1 for every person that told me over the years that they too feel tired, I would be a very rich woman. For me, fatigue is just part of the disease. The main problem is the post exertional malaise, which doesn’t follow any kind of pattern that I can see, and can strike without warning up to three or four days after I have unwittingly overdone it. I can then be bedbound for weeks on end before gaining enough energy to start all over again.
There is little awareness of the enormous disabling and isolating effects of the vast number of symptoms of M.E. (CFS) which fluctuate continuously and make any planning for a normal life extremely difficult. I often feel as if I must have committed some dreadful crime as I feel I am a prisoner in my own body with very little understanding and support from the medical community. To be ill, almost constantly for nearly two decades, is bad enough: to be disbelieved, misunderstood and ignored makes it all the harder to deal with.
An Ambassador For People with Chronic Pain
A friend of mine is an ambassador for people living with chronic pain. She speaks to medical students and pharmaceutical companies, discussing with them the reality of living with pain and the problems it creates. She talks about both the disabling effects of chronic pain and the ongoing difficulties of coping with the side-effects of the pharmaceutical products currently available.
It is my hope that one day there may be ambassadors for patients with M.E. (CFS) who can go out into the community and talk to healthcare workers to bring a greater understanding of the reality of living with this chronic and disabling disease. Maybe with increased media coverage patients with M.E. (CFS) will finally receive the compassion and care that they should rightfully receive.
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