I have read many different explanations of ME/CFS and a lot of the reading material will state that CFS has been found to last up to 8 – 10 years in some people and then they recover. However, I have never heard of anyone recovering from the illness unless they are trying to sell a product or something and I don’t believe those claims. Everyone that I talk to seems to progressively get worse the longer they have it, not better. I know in my situation I have progressively gotten worse over the past 20 years and it doesn’t look like a recovery is anytime soon.
If you know of anyone who has had ME/CFS for 8 – 10 years or less and then recovered, please post about them. I would be curious to see how many legitimate recoveries may actually be out there.
I’m 30 and I’ve had postviral CFIDS for the past 10 years, I am a LONG way from a full recovery (still stuck at home), but instead of getting worse I *AM* (very very slowly) improving. I do not have fibromyalgia. I can bike/walk for about 8-10 minutes a day now without crashing after, the rest of the day is TV/reading/music/audiobook/email, some light computer work for max 2 hours/ doing the dishes/ vacuum (not all in one day obviously), and about 3 hours of resting (laying down on bed) total during the day (2x 1 hour, 2x half an hour). I take B12 pills, selenium pills and thyroid meds (Hashimoto, which is a result of the CFIDS if you ask me) There’s 1 book from someone who made a full recovery, I don’t think she was sick for very ‘long’ (under 5 years) but it’s the classing post viral CFIDS story, with the classing post exertional misery crap.Other than the book she doesn’t seem to be selling anything (only recommending, but not making a profit from it I think? And the book is 10 dollars or something, so I doubt it was written with ‘profit’ in mind)CFIDS you don’t have to live with it (and something else as a subtitle, but I forgot what that was, something with steps..?) Her strategy was REST (and some supplements), in the form of a daily schedule (set routine, and enough resting after ‘activities’) and at least 10 hours of sleep every night. And common sense, and the guts to say a lot of ‘no’. That daily schedule/resting bit seems to work quite well for me too – my energy levels are much more stable, the brain fog is less, and for the first time in 10 years this week I could sit outside in the sun again without instantly feeling like crap. I actually enjoyed it again, reading outside, and it used to make me feel very cfids sick after a few minutes. (I also got weird rashes – nothing so far). Biking/walking goes better too – although there still is a 10 minute limit. So I take it all as a sign of ‘recovering’. The problem is the discipline of resisting the “I feel a little better so I want to do stuff that’s been laying around for ages waiting to be done”. Overdoing things still makes me crash at times, but flares/crashes with unknown causes are very rare. I can ‘plan’ for them when I know I”m going to overdo things, but overdoing things comes at quite a cost and it takes a while to recover from it (although it’s shorter than a few years back come to think of it! Used to be at least 1 month, now is 1 or 2 weeks or so!) So, overall it still sucks, but I’m pretty optimistic I’ll eventually recover enough to be able to live again 😉
I’ve had ME for about 8 years now, and although I’m not recovered, I’m very functional the majority of the time. The first three years were awful, I was in a wheelchair, housebound – now I live on my own and work from home. So, not recovered, but my ME got much better after 3 years and has stayed that way.
Lili.
Did you have me or cfs? Did you have alot of nuerological symptoms. I am going on 14 months and its getting worse. Legs almost paralyzed. Any insight would be great. Thank you
I know of no one recovered from this illness. That’s not much of a contribution to your post, but as you said, the only claims I’ve heard of have been from people selling something, such as Dr. Tietelbaum who cured himself in one year (according to the Doctor).
A year ago or so I met someone, at a support group meeting, who could be said to have recovered. If I recall, however, there was never actually a formal diagnosis, and this person relocated within a year or two after onset to a location that I believe CFS/ME patients would generally find to be favorable–a high altitude location in the Southwestern USA.
So I would have to answer the question with a small asterisk, but it’s a big NO.
Yes. I can list at least 10 people who feel they have recovered from CFIDS/ME.
They have used different ways of recovery from this physical illness and at different speed. Two men used disciplined behaviour to recover completely. Two used Mickel Therapy, four used the Lightning Process, and two used disciplined behaviour plus vitamin B12 and fish oils.
Of these 10 there are two descriptions of how people recovered on line to my knowledge. . One is Bruce Campbell who runs the above self-help site, and the second is Dean Anderson whose story can be accessed through the above site in the Success stories section of the on-line library
The site that the above reference is on is well worth exploring. It has helped me to move from 30% to 60% plus, attending college 5 days a week.
There is a great deal of free information on the site as well as a very inexpensive set of courses (with remittance of the fee if your are needing help). The best bit about the above courses is the ongoing discussion and target lists for your class which help to keep you following and improving your healthy behaviours. This on-going support is not available in such an organized fashion anyplace else I believe. I have been using it for nearly three years after being nearly bed and house bound. I am very grateful to be getting my life back, albeit slowly.
I was diagnosed with fibromyalgia four years ago, and I have been struggling daily just to get out of bed and go about my day. The treatments in the book “Beat Sugar Addiction Now!” by Dr. Jacob Teitelbaum (http://endfatigue.com/) have made a huge difference in my life. I am not cured, but my symptoms are much less and I have a lot less aching and less pain……….I feel that the SHINE protocol which is described in detail here has made such a huge improvement in my quality of life. I was surprised to see thatt he author had suffered with this same condition and had used the treatments he describes here to treat himself and to get himself well enough to complete medical school and live a good life. Knowing that he has been where I have been makes all the difference as far as I am concerned. Dr. T is one of the foremost experts on Fibromyalgia and CFS in the country – be sure to follow him on Twitter: http://twitter.com/DrJTeitelbaum
Having learned to live with ME/CFS for about 35 years i think recovery is possible to a degree.I remember reading once that 10% of people recover completely,90% fall into a pattern of improvement but are affected by relapse,and 10% continue to experience debiltating illness. So most of us are in the 90%.
Over the years i have experienced three major relapses where i have become really ill for a period of 18 months to 3 years. These relapses have been the outcome of periods of excessive stress in my life eg working fulltime.
What i have learned finally after alot of frustration and heartache is…. to utilise the mind -body link ( diet, rest, meditation, exercise, etc) and try to keep a balance, listening to the signals from my body which say”slow down”
Its become easier with age but i empathise with those of you who have so many hopes and plans for your lives. Know what its like when i’ve had to let go two careers that i loved … but then often another door opens… and the outcome may be different and can become equally fulfilling and allow one to maintain an achievable level of health.
Watch out for depression… i think it is part of the illness and with the other losses we face as well, it can beome serious.And good medical help is vital.
Be encouraged. It is possible to find your way to “live well” with this devastating illness.
Hello,
I have a very good friend who did the lightning process and recovered completely from ME. I would definitely check it out because I think it really works, Good luck.
I got ill when I was 23. After a year (just before my final exams) I was diagnosed with EBV, although the doctor said that the most likely explanation for my illness was post viral syndrome. I got progressively worse for about 18 months with a number of symptoms. I weighed 8 stone, periostalsis (I think that’s what it’s called) stopped working so every mouthful of food had to be swallowed with a mouthful of drink, dysentery, cognitive problems and shingles to name just a few. My friends thought I was joking but I really was on my way out, it’s unimaginable just how ill this virus can make you. After those 18 months (hardest part of the illness) I very gradually, over a period of 5.5 years slowly started to recover. The recovery process was marked by different phases and due to the cyclical nature of the virus I certainly had my ups and downs. I did manage to become a master of my body. I lead a clean life, and became my own doctor as the NHS refuse medical treatment to people with the condition. I woke up one morning with very painful lungs went to the doctor many many times over the 8 months it took for them to diagnose bronchiectasis. Desperate to put any reason behind my new condition but ME they blamed it on smoking. I knew something had to be done as this virus was killing me. By chance I read in the Evening Standard about a new treatment, Atlas bone re-allignment. Ever-sceptical I saw the consultant who I didn’t trust one bit, heard the spiel, puked at the cost – I decided to make the adjustment myself. I was successful after a week of manipulation. This released spinal fluids etc etc (I’m not a doctor) and for the last 6 months of my illness my spinal cord, neck, head have clicked, snapped and positioned itself back into place. I would class myself now as having fully recovered from ME after 7 years. I will always have bronchiectasis which was a result of my 7 year condition, that I will have to live with for the rest of life but it is a small price to pay believe me. I don’t believe in doctors, I don’t believe in alternative medicines, I tried all that with no luck whatsoever. I don’t even believe that the names ME or CFS should be used as these are confusing. I wanted to get involved and joined many help groups but found that other illnesses were nothing like mine. The only cure is your own body and becoming a master of it is the only way out. Even with all the manipulation my body just started to work normally one day. Unfortunately until the NHS decide to treat people with ME CFS (and the number of illnesses and diseases classified under these names) we will all be left drifting through life with this most terrible disease.
Hi James
I was interested to read your experience of NHS and M.E
My experience of both has been pretty much the same as your own, five years later and NHS has not changed a jot, they do nothing!
I have had this illness for 16 years, never been referred to a specialist, and basically had to learn everything for myself.
Whatever I suggest to my GP the response is always, well it hasn’t been scientifically proven! It’s like banging my head against a brick wall!
I hope all these years later that you are as well as you can be, given that ME is never completely cured, it goes into remission, and rears its ugly head just when you don’t want it to.
I hope you don’t suffer frequent flare-ups and that you are in a healthy state, long may it remain that way!
Best wishes
Allie
Starting when i was 20 I had CFS for about 7-8.5 years and have been free of it for about a year or so. It’s difficult to judge the exact duration because i got depressed towards the end and it’s difficult to know where the cfs ended and the depression began. However i am now completely well – i can fence competitively again which was always going to be my benchmark for a full recovery.
I am very lucky to say I no longer suffer from ANY CFS/ME symptoms any longer. I feel I have had a total recovery and I enjoy the best health, physically, emotionally, psychologically and spiritually I have ever had. However, I have changed my life to accommodate this healing.
I believe this debilitating disability that affects EVERY system of the body, leading to a plethora of multi system shutdowns or symptoms is indeed a living Hell as nothing seemed to work for it. I tried acupuncture, counselling, flower essences, EPA capsules, aromatherapy, yoga (even if I just laid on the mat!), CBT, herbal remedies, meditation, relaxation….
I was a district nurse before I got unwell. Very driven and worked very very hard and long hours. I struggled to understand why my body didn’t work, it did not go along the path of a ‘normal illness’ that I dealt with day in and day out. So when I had my small windows of energy I trawled the internet for something to help. It was all very depressing news really. The general gist was I was to have this for years!!! I saw a specialist professor in Cornwall who more or less said recovery if any would be long and slow…GREAT!!!!not.
Then a chance meeting with a stranger lead me to EFT (emotional freedom technique). I can honestly say this changed my life. Not only the symptoms of the CFS/ME but the Post Traumatic Stress Disorder I had had for many years.
I went on a course in EFT armed with my pillow and blanket as I was so poorly at the time and my 72 year mum took me to the venue.
During the first few hours I kept waiting for the huge power lapse in my system, the fatique and the decending brain fog to kick in…..it didn’t. AND what’s more is it never has. After the weekend coming home with my husband in the car it was like someone had taken out my eyes, given them a really good polish and put them back. I could see colours and details not seen for years. I walked around thinking ‘surely that’s not it’ and did keep waiting for the relapse.
My logical nurses brain kept looking for the ‘evidence, research based practice’ on how this could work so well for me!!! I did lots of my own research and found EFT worked on so many things. There is a lot of free information out there and a free manual to download.
I now enjoy a full, active life with no limitations or constraints and do the occasional nursing shift as i wish to. BUT my main passion is the complementry healing modalities I have since trained in. When i am invited I give talks to groups that have an interest in anything I do. This has lead to bespoke workshops catering for people with energy problems. I have walked the walk and talked their talk so to speak.
I don’t normally write on these type of things but I do remember clearly the sorrow, pain and despair I felt. There is hope…..
Any contact details
Greetings,
I recovered fully, then relapsed, and am fighting my way through it again now. I am actually collecting stories of recovery for a podcast and eventual book and would love to speak with those on the comment thread here who are mainly/fully recovered. There was a book called 50 Stories of Recovery from CFS published in the UK – a great resource – but nothing has been done of its kind in the US. IT IS POSSIBLE TO RECOVER FULLY – that’s the bottom line. Even some of the sickest of sick have found there way out of this. What’s of course frustrating is that there seem to be a million paths out (and a billion dead ends) so everyone has to find their own way!
Cheers,
April
I know of a young woman who was ill with M.E. for 8 years in total. I think the first 3 she was very severely effected, then quite a bit of relapse remit, with gradual recovery. Last I heared she’d been fully fit for sometime, working f/t & moving about pretty normally. She was a teenager when she first got ill so may be her youth helped.
Incidentally, I’ve had M.E. for 2 decades, I was very ill in the late 80’s with CFS, housebound for 18months, followed by 2 yr recovery. Fit for years, working f/t , able to walk miles, I’d recently begun to exercise at a gym then got 2 virases in quick succession & on antibiotics for several months. I went down like a bag of spanners. This was about 13 years ago – somewhat better than I was at the start but walking very limited, about a mile on a good day. A bit like ground hog day, I gradually build up to about a mile, then get some virus & crash back to square one, so ill I’m housebound for months It then takes me months to build back up again. Sorry I can’t give you good news.
Hi!
I was diagnosed with CFS in 1989 (my junior year in college) and was sick for five years before I turned a corner and started to recover. It was another couple of years before I truly felt ‘recovered;’. By 1997 I was back in college with a full class load and working part time. I have not had any relapses or setbacks since then that I would attribute to CFIDS. I don’t know what I would have done without the support of my family at the time that I was sick. Other than trying our best to manage my symptoms, there really wasn’t anything my doctors were able to do as a course of treatment. For me, the symptoms that were the most troubling (aside from the fatigue) seemed to change as often as every 6 weeks or so and ranged from sensitivity to smells (we just made sure I wasn’t around a room where cleaners had been used for at least 24 hours when that happened), to trouble walking (I had a temporary disability sticker for a while), to lighter colored hair (that one wasn’t troubling as much as just odd), to trouble finding words (we mostly just tried to find the humor in that one – a lot of me saying “you know – that thing the horse sits on – when I meant ‘saddle’). About 5 years in – I suddenly dropped a lot of weight and felt less tired – I think that’s when I turned the corner. The next couple of years I just kept testing to see what I could do – tried to go back to college and couldn’t the first two times – but found I could do a part time job. The third time I tried to get back to college – I found I could. In my experience, it is possible to recover. My prayers go out to everyone fighting their way through CFS.
Are you still ok? My daughter is 26 and has been so sick 11 months now. She needs hope. Would love to hear from you. She is blogging
staysoft.wordpress.com
Started with ME in 2002 and was housebound for about three years with all the usual symptoms, fatigue, pain, sensitivity to chemicals and foods then I gradually improved to the point that provided I paced myself I was functioning at about 80% of what had been my normal, with the odd set back that put me into bed for a few days.
In Dec 2011 after the office I worked in was painted with us in it I had a massive relapse which ended up with me in hospital with suspected heart attack – actually the cartlidge attatching ribs to chest bone was inflamed. So here I am again back at the start and hoping that eventually some recovery will come again.
Do I think we can recover? I actually think that we all do to an extent and even those who believe they are recovered will be self-monitoring and looking after themselves in a way they did not do before they had this horrible illness. And after all what is recovery? One person’s 50% is another person’s 95%!! But I do agree that different things work for different people and this illness is certainly not a ‘one size fits all’
And just to add a comment from 2012… I’m sorry to hear that you have not experienced any level of recovery yet Sandy (or at least had not in 2010 – hopefully you have now..). It saddened me so much to come across this question because through those dark years, lord did I need the hope that knowing that people get better gave me.
Well – I am now completely better. I had CFS for 7 years and was just about completely bedridden for the first couple of years.
Now I am not limited in any way. Just this weekend (I’m writing this on Sunday afternoon) I went to a concert til after 1 am and danced, I went for a bike ride which included a very steep hill, I cooked an elaborate feast for my partner, I did tai chi, I went to the farmer’s market to buy my vegetables… And I am still brimming with energy! The only difference is that I have learnt to respect my body. I know how to listen to what it is telling me and how to treat it with kindness.
I have heard of, or vaguely know, lots of people who have recovered fully. They now have normal and active lives, some of them doing very exciting things.
I hope this gives you hope!
I have had ME/CFS for the past 20 months and I know of two people personally who have fully recovered. 1 is my partner, but she was ill for 16 years before I met her, but has been completely recovered since 2005. Unlucky for her she is now saddled with me, but thank the lord I have someone who fully understands! She got better from just time, she tried lots of things, but time was the key.
The 2nd person is more exciting as she got better after only being ill two years! She is my aunt in SA, she was so ill she needed to be carried upstairs and my uncle once said ‘if she were a dog we’d be kind and put it out of its misery’ she was that ill!
She got help from a physio in SA using very gradual increases in walking etc and the biggest thing that helped her was walking in a swimming pool and building this up from 5 mins by 2 mins a week. Going every other day. She is now completely better, back at work as an oncologist, and has been been better since just before I got ill. Don’t let anyone tell you you can’t recover because that’s all part of it, the brain is key in what is going wrong in the body, so you have to have faith to have a chance at recovery!
I got CFIDS in 2007. I eas most debilitated in the beginning and the first 5 years. I am almost completely recovered although get ocassional crashes (I am having one now) these are maybe 2-3 days down,
Every 4-5 months or so. 100% symptom free in between.
Many factors in my own story contribute to this recovery. At the risk of going out on a limb, one of the biggest factors was truley assessing what needed to change spiritually, because I learnt you never heal physically without first healing spiritually. This process though is so uniquely individual that it matters not what my path was. Second main factor was to redefine myself from being a human- doing to a human- being. This has involved completely modifying how I do things and deeply listening to my body and heeding its warnings. Third main factor was knowing for the rest if my life I must pace everything and include alot of pre emptive rest. -Especially under times of physical, emotional or intellectual stress. Thr forth, was to
Make strides in overcoming the fear and grief involved. To live in the moment! To be at peace in the moment. Last, and I put this way down the list but still very important.:Make your environment as free of synthetic chemicals as possible, incorporate a strictly alkaline diet into your life at least for a year or more. Return to this way of eating periodically to recharge batteries. Highly acidic foods are huge! Alcohol, caffeine, sugars…. This will always facillitate a crash out of moderation. Lemon water, excellent, as is vit d3, fish oils, bicarbonate of soda and a great morning pick me up: neat apple cidar vinegar. Visits away from pollution… Last, I cannot stress the importance of a pain med like Tramadol, used sparingly and good doses of ambien or other strong sleep aid every now and again for a few days. Another way some people go is with an antidepresaant- the joy you feel from being pain free and conquering some symptoms allows you the spirit to heal. Talk to doctor as these cannot be taken all together!!! Warmest prayers for your
Healing journey!
Hi, are there any partially recovered people out there? I did the Lightning process 6 years ago and I’m a lot better than i was, but not well enough to go back a work. I feel like I have one foot in the ‘ill world’ and one foot in the ‘well world’. I’m so glad to be weller but do find my situation difficult sometimes. I would love to chat with others in a similar situation. I was operating at about 5% before the LP and at about 30% since.
I’m so sick of the internet and the attitude/information about CFS/ME. I have been ill with it since Feb 2012 (housebound since October). If you actually ask doctors who treat CFS then they’ll tell you that the MAJORITY of people recover either fully or partially. If you ask neurologist Dr Leslie Findley, he’ll say that fr his vast experience 60% recover fully and 20% recover enough to function pretty well. He has seen the most severe CFS patients and believes that eventually the condition rectifies itself.
I know at least 6 people personally who have recovered from CFS and two who continue to live with it. One of those two doesn’t seem to be trying to get better. I don’t mean to sound judgmental but if you don’t attempt to rehabilitate yourself from any illness then how can your body gain strength?
I have complete empathy to anyone who has CFS, my life has been put on hold because of it but I emplore fellow sufferers not to spread negativity. It is NOT accurate that only 10% of people recover completely, so stop circulating that information. Depending on which study you read the recovery rate varies hugely. Believe you can get better and who knows what will happen….?
I was ill for 8 years. I never thought I would be better. I tried Lightning Therapy, no such luck. Then I tried acupuncture. Again, no use. I had so many things wrong with my body. I was miserable. I had a gut yeast infection, vulvodynia, IBS, back & neck pain and all the CFS symptoms. I battled to get through each day and worked full time as a teacher. The turning point was when I started fighting the conditions I had using treaments – in a more multi-holistic way. There is a great diagram that is in a free handout you can have sent to you from The Optimum Health clinic. It labels all the possible causes of CFS. Then the trick is to identify what specifically caused you to have CFS. For example – I got CFS because of anxiety, immune system + digestive and infection problems, physical & mental trauma. The trigger was a viral infection and emotional/mental stress. The CFS unravelled website is also a wonderful resource in looking at the causes and solutions of CFS in this way. Other people will have different causes of their CFS. So with this in mind I quit my job, asked my partner to support me while I recovered, and made a plan. I chose treatments which specifically targeted my problems: I see a nutritionist who discovered my food intolerances, my gut infection, my hormonal imbalances and she gave me healing diet guidelines and prescribes me supplements. I started seeing a genuinely good acupuncturist (it’s always better to see therapists of any discipline who come highly recommended). I started seeing a psychotherapist but decided to change and then see an EFT therapist. I started doing to a meditation class. I am about to go and see a practitioner who works with homeopathy for infections. I was amazed that as soon as I started EFT my CFS symptoms went. I still get some sinus pain which I am addressing. I do not believe I am yet balanced enough to leave this healing journey just because I no longer have CFS though. I still have half of my IBS symptoms, food intolerances, mild vulvodynia, some headaches and a little way to go with anxiety. I went to see my nutritionist recently and she did a test using her vega machine which showed my health to be half way recovered to good health from where I was. This means I need to continue restoring balance in all the above mentioned areas. So I will continue with these treatments, adding in yoga too to improve my physical fitness now I am able to exercise. Considering how ill I was, I have come a long way. But now I have a healthy respect for the meridians and energy therapy, spiritual growth and physical and emotional balance I will continue until my infections are cleared up, my immune system is strong, my hormone levels are more balanced and so are my emotions. So, in short: I would recommend, as a start to your recovery:
http://cfsunravelled.com/
http://freedomfromme.co.uk/ (obtain the free booklet ‘M.E., C.F.S. and fibromyalgia in the 21st century’)
http://www.youtube.com/watch?v=Vuat7lit56A
It took me a short amount to time to recover to this point, compared to the 7 or 8 years prior to this of struggling through life with my day job. Now I have enrolled in a college course and intend to continue healing myself and returning to work and all that shebang.
Good luck guys – you are inspiration to have got so far with this horrendous, debilitating, infuriating illness and the fact that you are reading this shows you are still searching and therefore have as much chance as any other person to recover. x
I just wanted to post the full set of videos of the interview with Alex Howard. The principles in this interview are fundamental to understanding ME I believe – absolutely essential viewing
Video in parts:
http://www.youtube.com/watch?v=Vuat7lit56A
http://www.youtube.com/watch?v=beQH0mYqC7E
http://www.youtube.com/watch?v=9ZpxZM_-2SU
http://www.youtube.com/watch?v=G107SXkTLHc
http://www.youtube.com/watch?v=yoF5iQjwCgs
I had CFS for 7 yrs then it abruptly started going away. That was 18 yrs ago. I still have some residual effects: (13day) flareups after great emotional stress, or excessive physical demands on a certain part of my body (hands) will cause them to be excessively weak or sore, food and chemical sensitivity. I never took a lot of medications/drugs, because I didn’t have the money. I avoided vitamins because anything that boosted the immune system made me feel worse. I just exercised moderately, avoided stress and avoided certain foods and chemicals, poor memory. It is very important to find the foods you may be sensitive too. Milk caused depression, irritability and fatigue. I was sensitive to all sulfur products (dried fruits, raw sugar, etc. ) But I was able to go back to work and be about 80.% of what I originally was. I overall improved over several years. It may be harder to learn things but it can be done, it just takes a little longer. I remember hardly being able to read (not understanding and being slow) but that has all come back and I read all the time now. Good luck and just treat your symptoms.
I wanted to thank you all for your inspirational stories. After months of cfs negativity on the internet, reading this page has given me hope again. Sincerely. Thank you.
I’m 58 and had ME for 25 years. Since the initial onset I’ve had 2 severe relapses. I’m currently 10 months into my 2nd severe relapse. My first relapse was worse than the initial onset, and my 2nd relapse is worse than the first relapse. Prior to the initial onset I was a fitness freak (cycling) and full of energy for my job and family. The initial onset was due to contracting gastroenteritis. I’ll cut a long story short:
– At the initial onset, my employer was fantastic it took about a year to get back to work at a reduced capacity.
– It took about 7 years to be able to do some of the things that I used to do.
– I have never been able to exercise since.
– A further 5 years later thinking I was doing pretty good I picked up a nasty bug.
– Severe relapse number 1, I never saw this coming.
– Again employer was fantastic was only able to work a part time desk job which was a constant struggle requiring disciplined management but was still recovering albeit very slowly.
– 12 years later severe relapse number 2.
Although after the initial onset and after each of the relapses I improved (NOTE in relative terms) , the trend over 25 years has been such that things are getting worse, I am not looking forward to my 3rd relapse. The symptoms I have experienced have become more severe as well as having new symptoms introduced, made all the more fun by the cyclic nature of the degree of severity of well being, (often hourly as well as daily, weekly, monthly) given the cruelty of how it lulls you into a false sense of hope. This living nightmare is an illness of hope, I find made all the worse by the fact that I’ve always been a positive individual with a fantastic family and have just wanted to get on with life. Sadly this illness has robbed me of the career I would have otherwise hoped to have, but i haven’t allowed it to affect the things that are most important to me. Don’t get me wrong I recognise the signs and of course there are days, weeks, months where it is much more work than others to remain positive. You may think that after 25 years I should be used to it by now, but I’m not. Things don’t get better, they get different. This illness Has been a prison sentence, with a significant amount of time spent in solitary confinement.
I am currently confined to bed most days and rely totally on my wife for everything. I am not employed any more and have accepted that my employment life is over. I have been reading recovery stories over the last few months. I cannot accept that anyone claiming to be fully recovered, had what I have. I also stop reading any recovery stories that are trying to sell something, services or products. 7 years ago I visited a practitioner claiming to be able to help ME sufferers using homeopathic methods and left with a very negative opinion of these individuals. In my opinion those claiming homeopathic ‘cures’ are not helping me or others like me deal with those who do not understand ME and may get the wrong impression of what ME is all about and how genuinely devastating and debilitating it is. I have dealt with many doctors over the years and none have ever spoke positively regarding homeopathic ‘cures’ Most of my symptoms I have seen described by others, there are details of a few of my symptoms I have not seen described.
I am always glad to hear from anyone who may associate with my experience and who may see things from a perspective I cannot, if you have any words please let me hear them
not being negative just realistic! accepting the C.F.S. is been my only small relief. Its painful exhaustive and some days unbearable! but nearly 27 years of always having the flu symptoms and all that goes with this illness i have just to be thankful for a day here and there its not as severe. I only pray someday, no one else will have to go through this misunderstood REAL!!! physical illness