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?
TIsha recovered from serious health issues in the past, but the domino’s fell after she had a severe reaction to a virus.
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.
Pain was the first symptom in what became a cascade of effects.
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.
Severe brain-fog had a devastating effect on Tisha’s ability to work at her cognitively challenging job
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.
Feeling like red hot iron was pressing against her bones was just one of Tisha’s symptoms
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.
A Diagnosis
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.
A course in disease management puts a stop to Tiisha’s boom and bust saga and she slowly improves.
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.
‘Life’ Intrudes
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.
But then life intrudes….
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.
Bad Advice
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.
Migraines
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.
Migraines add an extra burden …
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
More unforeseen stress shows up
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.
Specialist Help?
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.
A medical system in breakdown leave patients with few choices
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
Tisha
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.
When a medical system is entirely profit based, this is the natural outcome.
That only leaves a federal agency to run with the ball.
But the Right is cutting medical research funding instead.
We got what we voted for.
Unfortunately Rich this is the UK, where our medical system is the National Health Service. Without access to private doctors, which only quite wealthy people can afford,, the majority are reliant on NHS practitioners who are constantly watching their budgets. A patient with M.E. (CFS) appears to come pretty low on the list for any kind of intervention.
Frighteningly this is in the UK. Likely England I would guess.
Yes Suella, you are right, I live in southern England.
My heart goes out to you. I had chronic fatigue and fibro for five years and felt like I had the drop-dead flu. I told my doctor I either wanted to get better or I wanted to die. I wasn’t suicidal but felt so awful there was not much quality of life. Because I was a school counselor, I somehow managed to work because I could sit down and work, but then I would go home and fall in bed. I would start to get better, over-do and then be back to the incredible exhaustion.I recovered using a very alkaline diet, diflucan, supplements, green drinks, testing my pH in my urine every day. I later when back to school and got a degree in Holistic Nutrition.
I have also found Emotion/Body Code helpful in healing…also qigong…
Kindest regards,
Patty
Thanks for your comment Patty. I have been looking into, and tried, various diets over the years. Some appear to have made a small difference, but none have (yet) made a massive and continuous marked improvement, and I don’t give up easily – I do try them for at least six months. You would be amazed at the very odd concoctions I have tried – my poor stomach!
I am so pleased though that you have recovered enough to go back to school and impressively achieve a degree in Holistic Nutrition. It’s always wonderful to read success stories. The feeling of hope always lifts my spirits.
🙂 Tisha
One more comment. There are some excellent hypnosis tapes for reducing pain. Take a deep breath in and out several times, fill your heart with love for someone who melts your heart and hold that love there as long as you can. Imagine that your pain is like a radio dial and take some deep breaths, blow it out gently and then reach over to the imaginary pain dial and turn down your pain….Just keep breathing in and out and turn down the dial on your pain…
Kindest regards,
Patty
I do try to meditate everyday Patty. I was taught how to on the Westcare course I went on back in 1999. Since then it has become part of my routine – and I feel cheated if I don’t manage to fit it in. My meditation is quite simple in that I ‘go’ somewhere very beautiful whilst listening to gentle music. I think it does help me to relax and am sure that it shores up my emotional well being too.
I will try including the radio dial in my future meditations – I’m always keen to include anything that might help.
Thank you so much for taking the time to offer your advise. I really do appreciate how we, as a community, take time to help others.
Tisha
What a compelling testimony Tisha…
“Everytime I felt I was making progress something would come along and put me back to square one”
“Yet again, I lost all the progress I had made”
“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” …
That spells out the drama pretty well…
Strange to see my words used like this – but yes, your are so right Christian – those few sentences pretty much convey the story of both mine, and I am sure, so many others, experiences of trying to live with the ups and downs of this illness.
Tisha
Tisha, all I can say is bless you – you have been through so much loss. What a courageous woman you are to persevere through all of it. Keep the hope and continue on. As a friend of mine says, “you never know when something wonderful is going to happen.” I try to remember that. I hope your sister is doing ok.
Thank you so much for your kind words Betsy.
I must say I don’t feel courageous at all, after all, I’ve had no choice in most of my experiences. I do however, definitely have an optimistic outlook (thank goodness) so hope is always my fellow traveller! Your friends saying is great – and so very true – I too will try and remember that.
My twin sister is back home with her family, but sadly has never made a full recovery, but it is a miracle she is still here, so we do both try to count our blessings.
Tisha
Sorry, I’ve got to say it. Your onset is classic for Lyme disease. The migrating pains, followed by exhaustion and brain fog. Your later symptoms of tendonitis are also classic, as are neurological symptoms such as migraine. I know that things are probably even worse in the UK as far as getting someone to take Lyme disease seriously, but it may be worth your while. What finally got me into thinking this was my problem was Pamela Weintraub’s book, “Cure Unknown.” Before reading this book (Weintraub is a reputable science writer), my response to anyone suggesting ME or CFS was Lyme, was “not that again”! Now I know that the standard tests are highly unreliable, and believe I may have wasted 20 years of my life not getting the treatment I should have. And I’m an MD myself.
Regardless, thank you for having the courage to share your story. Perhaps I will tell mine someday.
Thank you for your thought provoking response to my story Lynne.
I will certainly take a look at the book you mentioned. I must admit I have never considered any link of my illness to lyme disease, but I will investigate this line of enquiry! I am never one to dismiss any possibilities until I have carried out exhaustive research. The one thing this illness has taught me is that I cannot be reliant on the medical profession, and most of what I have learnt has been through reading much of the research carried out over the years, including much of the information that Cort kindly provides here on his site.
If there does appear to be a possibility that lyme should be considered I will have to see if my GP is willing to allow me to be tested. That in itself may be my biggest hurdle!
I do hope that you have made a good recovery, and who knows, one day we may all be reading your story, which sounds like it should be told!
Tisha
I, too, am now considering lyme. When we moved to Arkansas, I have been bitten by at least 3 ticks that I know of. They are very prevalent here, even in my backyard. You have to make sure you get the Western Blot test. Most doctors only use the Elisa. I’ve only been tested by the Elisa and it came back negative. I’m going to a lyme specialist in May. There are very few of them, so it takes awhile to get into…
Hi Tisha
Thank you for sharing your story. I agree with Lynne that your symptoms could be Lyme disease. Try to find a doctor who specialises in treating Lyme. I’m not sure what its like in the UK, but over here in the USA, a lot of GPs still use unreliable testing and are not always knowledgeable about Lyme.
If you go to ILADS (International Lyme and Associated Diseases Society) website, you will probably find more help and information there.
Best wishes
Ana
Thank you so much for the information Ana – I shall certainly have a look at ILADS website.
Tisha
Hi Tisha X
I am 52 and at the age of 45…went on a round the world trip for a year. Whilst away i got bitten by a tick in Kruger and after becoming unwell on my return was diagnosed with suspected Lymes Disease. The test after a year was inconclusive and had to be taken twice…this is due to their being certain time limits for testing to be done BUT all agreed that the likelihood was Lyme Disease.
The symptoms of M.E/CFS have been ongoing since 2008 and six years on, i go from feeling ok but unable to continue with normality to feeling utterly depressed and thinking of suicide and an escape from this sentence.
To make matters worse, i have BiPolar and my new consultant is of the opinion that i am suffering from a psychosomatic illness and in his opinion it is all in the mind. My present G.P said that they would refer me to the M.E Unit at the local hospital and i have just received an appointment for the Endocrinology Dept!
I drive occasionally, but am so afraid of my chronic fatigue coming on without notice, that i limit it to very short journeys. As for work…i did permitted work for 2 days a week for 3 hours and was so exhausted i was unable to continue.
Trying to explain to people that i can go from napping a few times a day to utterly exhausted and dead to the world is impossible. Most thinking after getting 4 hours sleep sometimes, i must be ecstatic and able to resume a normal days activities.
This is further complicated by the fact that my prescriptions, regardless of my partners debts etc have to be paid for due to his income being taken into account. I have at least 4 items per month including painkilling gel and painkillers and the NHS have refused my HC1 claim!
Not sure when this nightmare ends……
Wow Tisha, my heart goes out to you. You certainly have fought the good fight. I wish there was something to say that would help. I know how well meaning people sometimes say things that just make it all feel worse.
Bless your heart and your bravery
Hugs
Dawn (with Fibromyalgia, on disability)
The very fact that you made such a lovely comment is enough Dawn!
I too see people struggling with various chronic illnesses and feel powerless to offer any real assistance, but just knowing that someone is sending you good wishes makes life a little brighter 🙂
I do hope that you aren’t struggling too much with your fibromyalgia – that too can be so disabling. Hugs to you too!
Thank you
Tisha
This is a truly inspiring story. I can relate to every word of it and wish Dawn all the love she deserves.
Sorry….mixed up name….brain fog!!!
Thanks Vickie – and I totally understand the brain fog too! lol
Tisha
Tisha;
I too was diagnosed in 1996, endured devastating losses (death of parents/they were both under 60), and had two babies at the time (1baby lost), and your story is so mirrored of my own, with a few modifications, it could be my story. After desperately trying to continue my job of which I loved, I physically had to stop work last July; this was after years of reducing hours, part-time hours, time off to rest and recover from almost bed-bound state, etc. I have been denied SS and am currently awaiting a hearing.
I understand your journey and the daily struggles. I live daily by focusing on my blessings, i.e, husband, kids, siblings,
I’m so sorry you have been through such tough times Ellen. It’s the more difficult when you have to struggle to gain the benefits you should rightly receive – I know first hand the problems here in the UK – and the many people using every ounce of their limited energy to fight their corner. I sincerely wish you every success with that, and maybe once it is sorted you will be able to concentrate on you and trying to make the very best out of whatever energy you have.
Focussing on blessings is in itself a blessing – and something which this illness really teaches us – that which is important – I hope you understand my meaning – my brain is getting rather tired today.
Tisha
Thanks Tisha for sharing your journey. Oftentimes, my biggest “wish” is that people/family would try to understand what our daily life is like; no sympathy, just understanding
God Bless
Ellen
Maybe it’s time to read Steven Bruhner’s books on herbal antibiotics and herbal antivirals and herbal treatments for Lyme.
Maybe it’s time to try medical marijuana — low in THC, the stuff that gets one high, and high in CBD, the stuff that has helped folks with MS, epilepsy, migraines, pain, cancer and cancer treatments.
There are a lot of videos on youtube explaining these topics. Research in Israel and Spain, and just beginning in the US shows a lot of medical promise.
Thank you for the information Iquitos,
I haven’t yet seen my doctor to discuss the possibility of any testing for Lyme disease. If it transpires that Lyme may be the culprit I am sure I will start researching any possible cures.
Someone else mentioned medical marijuana several years ago, but I must admit it’s not something I would generally consider, but if, after stringent research, the ‘experts’ think it may be helpful in eliminating some of the pain, maybe I will think about it in the future!
I’ll check out the videos on youtube.
Tisha
Hi Tisha, A very sad story. I was wondering did you also experience autonomic problems like tachycardy and breathing problems? Kind Regards, Gijs
Hi Gijs,
Thankfully autonomic symptoms appear to have passed me by! I have rad that others suffer in various degrees with this, but, to date, it’s one thing I haven’t had to worry about 🙂
Tisha
What a nightmare roller coaster ride! I’m always moved to discover that so many of us share onset scenarios, where we keep trying to get back into activity and life, usually at our doctors’ suggestions, with the result an even worse relapse. And your health is exacerbated by those severe migraines and a series of autoimmune diseases. Layer upon layer of illness.
I’m also disheartened by your descriptions of the limitations put upon you by the National Health Service, and I hope you’re able to pursue the Lyme direction.
I’m glad you find relief from meditation. Thank you for sharing your compelling story.
Yes Carol, looking back I can see it has been one hell of a roller-coaster ride!
The good thing I suppose, is that when you are in the midst of it you just make the most of it! It was only when I actually sat down and wrote my story that I could really see when the highs and lows happened, and generally, but not always, life stressors seem to be the pointers to a downward trend.
As I said, I truly feel that my illness was exacerbated by the fact that in the early stages I always tried to get back to ‘normal’, and I do feel that our society tends to put pressure on us to do that. The media coverage and the ensuing attitude of our doctors makes us believe that somehow we are ‘responsible’ for our weaknesses, whether they be physical or mental, and that it shows our ‘strength’ to get back to ‘normal’ as soon as possible. One big lesson for me over the course of my illness, is to believe in myself and accept my physical limitations without feeling guilty!!
I would recommend meditation to everyone, even if it just gives them time to relax and take time out just for them. It is, for me at least, pure luxury 🙂
Tisha
I have learned many things from dealing with first Lyme disease and now ME/CFS. One, that no two people experience the same symptoms with either condition. Second, that while a treatment is successful for one person it does not guarantee success for the next. As humans we are quick to formulate conclusions that may not be necessarily true. It is with good intentions that we want to pass on what we think has worked for us. Examples: I believe a certain diet relieved my body of pain over a year ago. I used to tell everyone about it, but have since heard that diet doesn’t effect everyone the same way. I’ve decided that I will continue eating this way and only offer it as suggestion that may help. But, was it the diet? I can only really appreciate that I have no pain. At one time I believed if I pushed myself physically I would strengthen my body. I now know that doesn’t hold true for a person with ME/CFS. I have a LLMD and followed a very intense treatment for Lyme, believing all the way through it and afterward that it would be effective and I would be back as a better, improved, appreciative me. Yup, ineffective.
I never give up hope for an effective treatment and am always searching, but at the same time I am learning to treat myself and the world with great care, love, patience and presence.
Thank you Tisha for sharing your story.You inspire me to carry on.
I agree with you Susan. I have heard of so many nutritional ‘cures’ over the years – hence the very odd diets I have tried and tested, but what appears to work for one doesn’t always work for others.
I have read that years ago people who had MS and Parkinsons were often misunderstood and maligned. However, thanks to the advancement of medical technology eventually it was confirmed that they were actually very ill with a real disease. I do hope that ME/CFS will follow the same course in that technology will be able to pinpoint exactly what is going on in our bodies and also why no-one seems to have exactly the same symptoms as someone else.
I am convinced that once the ‘key’ to our disease is found and recognised, researchers will be able to develop some kind of treatment, even if it just reduces our symptoms.
It would be such a relief to have a diagnostic tool that would totally confirm our illness – both for our own peace of mind, and for the many problems so many patients have to contend with whilst trying to gain benefits/insurance payouts etc. Maybe then it will be taken seriously by healthcare workers and we would be treated with respect and compassion.
I too never give up hope. I think if the day finally arrived when I would lose my ability to focus on the bright future that I still envisage for me, my life might feel meaningless. Whilst there is even just a glimmer of hope I am not prepared to give up!!
Thank you so much for your comments. You too inspire me 🙂
Tisha
A very sad story & My heart breaks just reading it, you have been through so Much, I haven’t got ME but have had Fibromyalgia since 2011, you are so right as no medical help for us All, We All so need our life’s back as this life is Horrific Daily as non stop Constant symptoms, it just never leaves us, Yes I have heard that to regarding people saying just have a good nights sleep & get out for walks, Gosh wish it was that simple for us, They have not got a Clue or our Medical Folk, We are so Strong to handle all these unknown things inside our body’s 24/7, I so Wish in the near future there will be a Cure for us All as this kind of life is the pits as we All no, Love & Hugs to you Tisha <3 xx
I was really touched by your comments Issy. As I said in a previous reply, it wasn’t until I actually sat down and wrote my story that I could see the journey I have been on!
My life has not been what I call ‘smooth’ – it has certainly been a bumpy ride – lol – but through that I feel I have learnt a lot, and often try to appreciate the good in my life.
I think having been diagnosed with breast cancer in my mid 30’s, in an odd way, has really helped me to put things into perspective. Very strangely, and sadly, three of us, all the same age, living next door to each other, all had cancer at the same time. One had leukemia and two of us had breast cancer. It was a dreadful time. Very sadly my neighbour who also had breast cancer died within the year. She was only 36 and left two beautiful young daughters. On my bad days I often remember her and think what she would give to be living my life. So, as I said, in an odd way, experiencing that over 20 years ago, has helped me to cope with this.
It is still rotten, and so very frustrating, and I must admit I do get very down at times – but then I wouldn’t be human if I didn’t! Sometimes a jolly good cry seems to help me blow the cobwebs away 🙂
Hugs Tisha
Hi Tisha, funny I should happen to read your story at this moment since I just finished writing to the Human Ressources of my workplace to tell them how their supposed specialists have damaged me even more… My doc and I had made a treatment based on what was recommended by the UK ME association and it was quite helpful but. The expert from work, however, knew nothing about the disease and wrote that my medication was inappropriate…
In order to keep getting paid, my doctor changed everything and I had to stay in bed for several weeks as a result… I too find that this illness is worsened by all those experts and specialists who pick up advices out of a hat… LIving the way I live is bas enough without having to deal with everything that seems to come with it.
The worst thing of all, to me, is hope. Every new medication, every new study, every new magical solution that comes out make my hope go through the roof and the fall, every time, is more painful than all the physical pains I ever had.
I wish you serenity and peace. May you be strong through adversity.
Take care
Nathalie
Oh Nathalie, I so feel for you! Yes, sometimes ‘specialists’ can be damaging to health! How dreadful that you had no option but to change your treatment plan to adhere too your workplace ‘experts’.
Please, please, Nathalie don’t ever give up on hope. I do fully appreciate the downside of being an optimist – I have been so pleased at times to read of a possible ‘cure’ – only to try it and finding it didn’t work for me – and the awful empty feeling afterwards – as you say it does feel like a real painful experience – but it would never stop me still looking. 🙂
One day …. one day … I am absolutely positive that there will be effective treatment. I can assure you that patience is not a virtue that has ever come easily to me, and I am still trying to learn how to be patient.
I tend to have times when I actively scour the internet for something new to try, but then I also take a lot of time out just to ‘be’ and focus on other activities in my life – even if it’s just listening to new music if I’m physically incapable of not much else. Then somehow I muster the strength to start hunting all over again.
I do hope that your Human Resources department take notice of your letter and that you can get back to the treatment that you felt was doing you more good than harm.
Tisha
Hello Tish
Your story has hit a chord with me. I am at my wits end now after nearly 30 years with CFS,Crohn’s Disease,Fibromyalgia and Hypothyroidism. I live on the south coast of England and feel very ignored and have never had any medical treatment for my CFS. I tried the group meetings at the clinic, hoping for great things but found it too difficult to deal with. I tried one to one counselling but couldn’t remember anything they’d told me from week to week because of severe short term memory loss.. I have never been offered any other assistance and my doctors don’t know how else to help me. Apparently CBT is the only treatment offered.
CFS is not taken seriously in England in my opinion and there really needs to be a huge change in the way that patients are dealt with. In our current political climate I don’t ever see that happening, especially as the government are clamping down on ”malingerers’ because that’s how I feel I’m viewed at times..
Things are very different here in England. I’m a natural optomist, however I don’t see anything at the present time which gives me any hope for the future.
I feel quite humble when I read what you’ve been through and I hope that you get some respite in the not too distant future 🙂
Goodness Lyn, 30 years! My heart goes out to you.
I too live by the south coast, and have found from reading information on the internet that the amount spent per person with ME/CFS in my area is £0 per annum!! No wonder there are so few facilities.
In a way I am fortunate that I have what appears to be an array of autoimmune problems, which means I do get to see a rheumatologist once a year. Unfortunately, so far, I have been unable to tolerate any of the drugs they have given me to try and calm down my pains, which I gather is quite a common occurrence for those of us with autoimmune issues.
I am forever grateful for the internet as it does at least give us an opportunity to ‘meet’ other people, especially when we are physically incapable of meeting people in a social setting. Without it I cannot imagine how lonely my life would be. Do you belong to any local support groups that you can contact via the internet? I do find conversing with those we are going through similar problems does make me feel I am not battling this alone.
I do hope that in time ME/CFS will be taken seriously. Thank goodness for websites such as this one which I am sure help to raise awareness within the wider community.
Tisha
Tisha,
God bless your courage! I see a lot of overlap, and though I wouldn’t wish this curse on anyone, it’s somewhat comforting when you see others with nearly identical symptoms! Then you know you are not alone, and not crazy, and my biggest pet peeve “not malingering”! This is usually not a problem with ME/CFS doc’s, but the stigma always seems to be lurking elsewhere. But you don’t look sick! It’s like someone rubbing salt in your wounds! Thanks Cort for the knowledge and the hope you provide to us with your efforts!
I totally understand what you mean, Doctari, when you find it comforting that others have similar problems. I too feel that way.
Unfortunately the media coverage has not been kind to ME/CFS patients and one of the problems, as you mention too, is that we don’t always look particularly unwell.
My husband has said he is going to make me a T shirt with a slogan on the front – “I may look well, but my energy can give out at any time”- and on the back – “Yes, today I can stand …. but only for a few minutes at a time”. He thinks I should wear it when we park in a disabled parking bay!
My identical twin is paralysed on her right side since having her brain haemorrhage. Whilst she can only walk very slowly, and with a frame, and sadly her brain isn’t working as well as it did, she is in fact capable of far more than I can manage even on my better days. She is always out and about with her carers and thinks nothing of going shopping or to her stroke club. Yes, she is physically disabled, but she doesn’t feel ill, which I think is the major difference. However, to look at the two of us you would assume that she is very ill and I am fit and well. How deceptive looks can be!
There is a real stigma attached to this illness and as I said in my blog I am sure the terminology – Chronic Fatigue Syndrome – really hasn’t helped at all.
Thank you so much for taking the time to post your comment.
Tisha
Hi Tisha,
I read your ME/CFS journey with many nods of recognition. I became ill in 1981 so this next month it will be 33 years for me.
It makes me shudder to see what the citizens here in the US have done in voting in people whose main desire is to shove us all into the same type of healthcare hell the people of the UK have endured for so long. Believing the lie that healthcare will be ‘free’ the abyss lies before us all.
As to migraines I have had the similar progression of severe migraines of the same type you’ve experienced over the years but have had some real reduction in them by taking verapamil, a calcium channel blocker. I began at a low level dosage morning and night and over the course of a few years slowly increased the dosage as the migraines would begin to break through again and at 240 mgs twice a day it has really helped to reduce them from several a week to a few a month. This is an inexpensive medication that has the added benefit of keeping blood pressure lower. It is possible it might help you as well.
Hang in there!
Kathy
I can’t imagine what is has been like for you Kathy, being ill for 33 years. It must have been so difficult, especially in the early years before the advent of the Internet. I realise how fortunate we are now having access to so much information.
Whilst the theory of a free health service sounds wonderful, here in the UK we have what is termed in the media as the ‘postcode lottery’. In effect that means that the medical treatment you receive is very much dependent on your local health authority. One person living in one area may find their medical intervention absolutely first class, whilst someone with an identical disease living elsewhere may find there is no treatment available for them. What I think has made our NHS worse are the wonderful advancements in medical technology i.e. MRI scanners, successful heart surgery etc. More and more equipment is so expensive and someone somewhere has to decide which diseases have priority as they calculate their annual budgets. Unfortunately ME/CFS doesn’t appear to be top of any lists!
I do take propanalol, a beta blocker, twice daily as a precautionary treatment for my migraines and I have definitely noticed a marked improvement in both the severity and occurrence of my ‘pain’ type migraines. I’ll have a look on the Internet to see if it is a similar prescription to that which you take.
On top of everything else I do often feel that whilst I may be going through a better phase ME wise, a nasty bout of migraines can render me totally disabled, so any reprieve is certainly welcomed.
I do hope that your illness has still allowed you to find some enjoyment in your life Kathy. ME is such a life changing disease and I sincerely hope that some form of effective treatment becomes available in the not too distant future.
Very best wishes,
Tisha
Thanks for your reply, Tisha.
First let me say that even with 33 years of ME/CFS I am a most blessed gal 🙂 I can look at all my life with all its challenges and see the Grace that has led me to where I am and am more than thankful that the good Lord has given me the life He has.
Be sure to note, Tisha, that the meds I’m talking about for migraine are ‘calcium blockers’ NOT ‘beta blockers’. I know of the meds you take and that they can help but have their limitations. My feeling is that the reason the Verapamil works is due to the types of problems we have with CFS and that for whatever reason the blocking of the calcium channels works best for us with easing migraines.
It takes a few months to build to the level where they really begin to help but I truly wouldn’t want to be without it. One of the most debilitating symptoms I’ve had since getting sick with ME/CFS has been the migraines in all their forms and couldn’t even get diagnosed as a migraineur for five years. One of the things I’m most grateful for is finding my doctor 25 years ago who knew nothing about the CFS, but who listened and believed me and then educated himself about the illness.
You are right about the pre internet times, it was VERY difficult to get any information about the illness then. I remember the very first editions of the CFIDS Chronicle as it was called back then came out in mimeograph! We’ve come a long way, haven’t we? 🙂
Hang in there, we’re all in this together.
Kathy
What a wonderfully positive reply Kathy. I’ll make certain to ask my doctor about the calcium blockers. They sound very good.
Like you, I too find the migraines so disabling, and I have yet to find any kind of trigger for them although I have eliminated so many suspect products/foodstuffs from my life over the years. I’m always hopeful that I will magically hit upon something that will make a massive difference.
Also, like you, I am eternally grateful for the life I have. I try to appreciate that whilst it is a very limiting illness, I am so fortunate in that I do have the occasional good periods, and I make certain I make every good moment count. 🙂
Always hanging on in there!
Tisha
Tisha, I am sorry for all that you have been through and the intense pain you suffer. I live in the UK and have had ME for 14 years, currently bedridden. I admire your optimism and refusal or not give up hope and enjoy what you can within your very restricted limits.
Kathy, I was interested to hear you describe our NHS as a health hell hole. I personally support a national healthcare system and feel frightened at the thought of the American system. Perhaps some of my fear is due to ignorance as to how it works but I am so grateful that I live in a country that healthcare is available to all citizens. The NHS is not perfect but in many areas it is excellent.
I got ill just after I completed my education and I wonder how American citizens fare when this happens? How do they get insurance if they have never worked?
Yes, when it comes to ME the NHS offers little to nothing and in fact harmful recommendations such as GET. However, I feel this is by and large because there are no accepted treatments for ME worldwide and the big problem is science/medical profession worldwide hasn’t taken ME seriously internationally.
I see there are some good private American doctors who have treatments that they try with some success to varying degrees with some patients but I get the impression that these are only a handful of doctors in a very large country and like here in the UK many doctors know little to nothing about ME. Also it seems that US patients can only access these doctors if they are lucky enough to have very good insurance or can afford to pay out of pocket. So overall it seems to me that American patients with this horrid illness are not getting great healthcare either for their ME. We are all being let down badly. May this change for the next generation.
Annie,
I think the treatment that the majority of patients with M.E. receive, no matter which country they live in, is way below a standard which any of us would consider as reasonable.
As with most things in life there are always pros and cons. I too think that here in the UK we are fortunate to have a ‘free’ NHS, but as I mentioned in an earlier reply, there isn’t a cohesive treatment/diagnostic plan for M.E. throughout the country. It is very much a case of luck as to where you live, as I’m sure it might well be throughout the world.
As you rightly say, until ME is perceived as a serious medical condition throughout the world, changes will be slow in coming. I too hope that the next generation will see a change in the way they are dealt with, and I am hopeful that one day, through collaborative research and sharing of results, a cure or treatment will be found.
Thank goodness that we have the ability to share our thoughts and aspirations through sites such as this.
I am so sorry to read that you are currently bedridden and send you my sincerest and warmest wishes and hope that you begin to improve soon. Thank you so very much for taking the time to respond to the comments 🙂
Tisha
Tisha, you’re amazing! Thanks for telling your story. Although I’m bed bound most of the time, I’m not in pain most of the time, and after reading your story, I feel so lucky. Cort got the headline right with “A Story of Perseverance.”
I’m sorry you live in England. It seems to me that people in the UK have it worse than nearly anywhere else I’ve heard of when it comes to ME. Yes, I wish we had ambassadors too! I wish I could be one, but I’m afraid it would kill me outright.
Best wishes for lifting of your symptoms and deep rest in the meantime.
Oh Sarah, thank you, but I really don’t feel very amazing at all! Lol If you could see me most days, struggling with the most mundane tasks I am sure you would realise that amazing wouldn’t be an adjective you’d use to describe me!
I have been bed bound at times, and fully understand living within the confines of just one room, and how incredibly limiting that can be. So, whilst I may have pain, I can often make it downstairs and most days manage to sit out in the garden. My husband Simon built a canopy over a small seating area right outside my back door so that I can go out in all weathers, even when it’s pouring with rain.
I have often read that here in the UK we are less fortunate with the treatments available for ME, but I am always hopeful that changes will happen. I just wish it would be sooner rather than later.
Since writing my story I gather that an ME charity is now actually putting the ‘ambassador’ idea into practise – so there is hope!!
Thank you for your best wishes, they are of course reciprocated, and I sincerely hope that your symptoms subside and you improve so that you are no longer bed bound.
Tisha
I’m sorry you live in England. It seems to me that people in the UK have it worse than nearly anywhere else I’ve heard of when it comes to ME. Yes, I wish we had ambassadors too! I wish I could be one, but I’m afraid it would kill me outright.South Park Seasons1-16 DVD Box Set | It’s Always Sunny in Philadelphia Seasons 1-7 DVD Box Set | The Simpsons Seasons 1-24 DVD Box Set | White Collar Seasons 1-4 DVD Box Set | Human Target Seasons 1-2 DVD Box Set
This is just a thought. The prolapsed bladder, hernia, joint pain, muscle weakness, pain made worse with exercise, fatigue, suspicion of connective tissue disease… makes me think of Ehlers-Danlos syndrome. I’ve been sick for 17 years and have dysautonomia and CFS diagnoses, but a new Doctor believes I have EDS – I am following up with a geneticist. It is more and more becoming recognized as a potentially disabling, multi-system illness and not just a skin and joint problem. Have you been evaluated?
Thank you POTSNJ for your comment.
I have spent some time reading about EDS over the last couple of days and whilst I can see that some of my symptoms seem to ‘fit’, the major symptoms that are mentioned have thankfully passed me by.
I will though mention this to my rheumatologist at my next appointment. I am no doctor and it always a good idea to discuss any possibilities.
I do hope that you receive a firm diagnosis, no matter which condition they find you have. I, for one, find that once I know what I have, I somehow find it easier to deal with.
Tisha
Thank you so much for sharing your story with us, Tisha!
Hi Tisha
As another one who lives in the uk I understand the problems you have with getting anything investigated. I’ve also had gps try to tell me its all in the mind. Personally I’ve found the best way is to do your research (sites like this are very helpful) and then be your own guinea pig. Diet changes have helped me a lot and the methylation protocol has given me some help. However as my brand of ME doesn’t sound much like yours my experiences may be of limited help to you.
Thanks to the Love your liver roadshow (sadly finished for this year) I have discovered I may have liver problems that need further investigation. There is a great similarity between the symptoms of liver disease and some ME symptoms but as my blood tests were normal I’m not sure my gp will refer me even now. So I’m “treating” this with things I’ve found by trial and error.
Although the cause of your problems sound different you could consider if supporting your liver might help. I currently take 50mg vit D as my levels are low ( I did manage to get an NHS test but private blood test here from http://www.chemistdirect.co.uk/myrios-blood-testing-kit-3-gold/prd-45f) Most brits are deficient at this time of year and a 25mg supplement is unlikely to do you any harm even without the test. I also take NAC, phosphylatyl serine, magnesium and APT. I’m well enough to exercise – cautiously. I’m also gluten free as that cured my problems for 5 years before excessive exercise (on gp advice) caused a very severe relapse. I’m working on changing my gut flora by eating live yoghurt.
I believe several conditions are being grouped under the ME/chronic fatigue heading but that what starts it off may be less important than why the body doesnt heal itself. I recommend looking at ways to support your body while it recovers. Magnesium is excellent for pain but can cause diarrhea. It’s absorbed by the skin so epsom salts baths (war, 500gm salts, stay in 15 mins, pat dry) can help. I am trialling Floradix and as long as you dont have IBS that’s good. If you do then dont try a 20ml dose.
Thanks so much for taking the time to offer so much information tatt. I do believe that through sharing what works for us, we may well be able to help others.
This is the second time in the last week that I’ve read about the benefits of Epsom Salt baths, so I think that will definitely be on the shopping list!
I have been making notes of the many suggestions people have kindly offered and will be asking my doctor if I can have a longer appointment to be able to discuss them with him. If even just one makes a slight improvement that would be great!
I have also found that it is extremely rare for two people to have exactly the same symptoms, and as you said, maybe it’s not what caused the illness in the first place that should be tackled, but maybe the emphasis should be put on finding out why our bodies don’t heal correctly.
I have had my ‘illnesses’ described in several different ways over the years, but the one that made the most sense to me was a description given to me by Dr Hughes, who ran the Lupus clinic at St Thomas Hospital. He said that I had many autoimmune illnesses and that they all come under one umbrella with M.E. being one of them, and with numerous overlapping symptoms.
I do believe that in dealing with auto-immune diseases we are still in the very early stages of research, if indeed M.E. is an auto-immune disease?? The more I read the less I think I understand!!
Tisha
The NHS doesn’t believe that Lymes is present in the UK, BUT it is now endemic in the New Forest and in the highlands of Scotland. The New Forest even has notices at the train stations warning visitors. Did you holiday there? If so try hyperbaric treatment for the Lymes. It can interfere with the cycle of parasite replication.