Stories from people with ME or CFS
Some of these stories end with full recovery, others battle on but share inspiring stories about how they make the most of what they have, sometimes in very creative ways. Some people talk about what helped them which can include faith and religious beliefs.
Part-time self-employed work with ME
A story by Ann Starkie of AS CAREERS
Ann is an award winning careers advisor and author. She also has ME and has been connected with Elevate for quite some time. She has written a little bit about her experience of being self-employed, on a part-time basis, and how she has setup up her own company despite many struggles and challenges which she describes with disarming honesty. It is truly inspiring and encouraging to see what she has been able to acheive despite it all. She shares some helpful insights into how she paces herself and manages her time and energy.
[spoiler title=’Read more…’ collapse_link=’true’]I guess my story started in November 2005 when I had flu quite badly and it just didn’t go away. Initially I thought I would be off a couple of weeks from my full-time job working as a careers adviser in Connexions Norfolk. However, weeks turned into months with no real diagnosis with what was wrong.
I went from working full-time to not being able to walk to the bathroom, suffering terrible fatigue and pain in all my body, strange feelings in my head that felt like it was stuffed with cotton wool. I wasn’t able to take my daughter to school who was 5 at the time and that was an all time low when I had to get my mother at the time to come over from Cromer and friends to help me take her to school and fetch her.
After countless trips to the doctor I was eventually diagnosed with ME after visiting a Neurologist privately and then being referred to an ME specialist. I picked up two vital things by March 2006 – I wasn’t going to be able to go back to work, and no-one knew how to make me better. In April 2006 I resigned from my job and although I had made a little progress and could now walk very short distances I was nothing like the person I had been. It was all very depressing. I never signed on as I couldn’t face it, but I had an earning husband so we could manage.
For some time whilst working at Connexions before I got ill I had liked the idea of going self-employed because of the work life balance. However, getting ME thrust me into this as the only way I was going to work and get money as I was very reluctant to go on benefits.
I believed very naively at the time I was going to get better soon, so I didn’t want too much of a career gap! I started working on my website initially from bed as someone had told me I had to be clear with myself about what I was going to sell, and my pricing. He said setting up a website would help me clarify my market and what I was selling. I did this with a programmer who came to my house and I have had more than one meeting by my bed side!
I followed a guide given to me from NWES and at the time Business Link on setting up a small business which was very helpful. I chose the name AS CAREERS because it meant I could be individual, it had careers in the title so that meant it was obvious what I did, and I could start trading.
My first trading day I never forgot was September 1st 2006 and I had a call! The whole cost of the business was £1000.00 from savings including computer, printer, website the lot. I had put an advert in the local church magazine and the website was launched but I didn’t expect anyone to really ring.
To begin with I was bad at pricing. I priced my time too low so ended up working for next to nothing. I didn’t calculate in the non-client contact time, time I would spend typing up reports or doing work like administration for clients. I also didn’t factor in other expenses very well like website costs, paper, ink, although there wasn’t much travel costs in the first year!
Despite the business literally seeing three people in the first month I felt proud I was getting out of bed albeit down the my office in a back bedroom and doing something. The pain was very bad and there were many days I couldn’t work at all, just recovering from seeing a client. Conversations were very exhausting to begin with. More than once I shut the door from seeing a client and collapsed on the sofa too exhausted to get upstairs.
About a year on in the March of 2007 I began to feel more confident and changed my website, cut costs, changed my pricing and felt more confident about what to offer, what sold and how to soft well down the telephone which suited me better. I was beginning to recover a bit as well as the brain fog started to go, but I still couldn’t walk far. I began to plan how many hours I could do a week and to try to book in clients with rest periods before and after. Literally, initially this meant one client maximum over two days.
I began to be able to do a little more but still had no way of doing much more because as soon as I did more I relapsed and spent ages in bed. My OT at the time got very angry as I seemed incapable of sticking to a pacing routine, so frequently was crying down the phone to her because I had overdone it.
I got into seeing clients at home and then started to take on work from another consultant who had won a National Careers Service contract at the time and offered me odd clients. Initially this was at home but later on I was well enough to go out to employer’s premises and to other venues. This work was a lot more demanding and I lived off pain killers.
I didn’t tell the consultants that I had ME initially and I had to be very strict how many days I could offer so only worked a few a week at this point with days off in between. At times I had to work three days in a row it was a nightmare. I have had to lie down in my car at lunch time!
In 2009 I was offered the chance to write a careers book for Trotman. The deadline was very tight – they wanted it in 3 months start to finish. I stopped client work at this time and did much of the work from bed or in the library where I would research and lie on the comfy chairs.
I scheduled out the book building in rest days which meant I had to be very smart about how I wrote it as I actually had less time than a normal author. More than once my commission editor rang me and I was in bed – I didn’t say I had ME but said I was feeling under the weather with a virus…..this was a time when I felt I couldn’t tell a publisher I had ME. This was bad and I wouldn’t advise this in my work, and don’t do this now but I wasn’t confident that they would let me do it otherwise. I completed the book on time.
This work increased and by 2010 I was managing a much larger contract with a different manager who knew about my ME seeing up to 5 clients a day for about three days a week. This I did from an office in town. I did this up until October 2014 and although the money was good, I wasn’t sorry to stop when it went to another contractor. It had really taken its toll.
I was in a lot of pain and taking Tramadol four times daily and I had very little energy to do things with my daughter who is also sick not from ME but from an immune system complications which means lots of hospital trips and extra problems like her not sleeping well. I had no social life as I didn’t have the energy – I had tried joining a choir and given it up. I also couldn’t fit in any exercise at all which I saw as important to making my stamina better.
I made a conscious decision not to take on external work again. Funnily it was not so much the work but the travelling to and from the office was a major exhaustion. Not only the driving but walking to my office up a short hill was really a big problem.
I have been offered the chance of working in schools recently but turned it down because I want to have a life alongside working, and I just can’t have both if I don’t pace and work from home. I now aim to see three private clients a week giving me enough to get by and spend more time and make more money from existing clients rather than looking for new ones.
I still don’t make a fortune, as I only work part-time but I am at a point now where I can earn enough to get by and although I often crash and curse I do have some times I can take my daughter out now. She has been very poorly this year and in hospital so this has also set me back physically.
Going self-employed was the best decision I have ever made in my career. It has enabled me to salvage a career that would otherwise have been destroyed. I have kept my professional memberships and made some achievements along the way to become a national award winner and an author – not that I being boastful!!
However, I am not cured and every day I have pain and struggle with pacing work commitments, with social and family needs. Despite this ME has given some amazing positives. I would never have been the mother to my daughter I am now without it. I am far more patient, kind and loving to her and she really needs that as she is also ill. We laugh together about how terrible we both feel sometimes, and how lucky we are to not even have to explain to each other. We just know.
I have friends who really are friends now, and I now don’t have anyone who isn’t in it for the true me as the other friends have long gone. I have all the friendship of my Facebook friends on Elevate who are wonderful and have met people that otherwise I would never have known. Without ME I would not have given up work and made the push for self-employment and written a book and been lucky enough to do a job I love, as I no longer have to answer to someone else. I have been able to spend time with my mother who is now much older and disabled and this would have been time lost. Most of all I feel that working self-employed has given me a sense of purpose – I know what I want to do and am living it. Without ME I am not sure I would have achieved that.
AS CAREERS [/spoiler]
A Recovery Story by Daniel.
Intro by Robin – Elevate team leader.
Yes full recoveries from ME do sometimes happen, or others see a great improvement . It can be hard to hear these stories if it’s not happened to you after a long time waiting. But it’s important to remember that it’s not totally impossible; it’s not completely hopeless. I personally know 3 people who have fully recovered from ME.
I first got in touch with Daniel in 1998 and soon saw how amazingly he’d recovered after years of ill-health with ME. I’ve followed his progress on Facebook and seen how he’s got married, worked as social worker and now has two children aged 7 and 4. I half expected a typical relapse but haven’t seen it.
Hi, I’m Daniel. I’m 34, live in Nottingham (originally from Northumberland in the North East) and am a social worker in fostering. My story began when I was 10 years old. My Dad’s a farmer and I grew up on his farm, a few miles north of the market town of Morpeth. I loved being on the farm and trying to keep up with my Dad’s long strides when looking the stock. I played tennis and enjoyed going to lessons in the local park…..[spoiler title=’Read more….’ collapse_link=’true’]
My classroom for the year from September was on the 4th floor of the ‘tower block’ part of the school, and following a virus that had been initially thought to be appendicitis but turned out to be stomach pains that subsided, it became increasingly difficult to get to the top of the stairs at school. It soon got to the point where I couldn’t get to school. I had a general feeling of exhaustion, head aches and muscle pain. With RAF bases within a few miles we used to have Jets flying low over the farm, with sudden roars over my bedroom, exacerbating sensitivity to noise. Unfortunately, living on a farm, and lads of that age not being overly committed to friendships, I found that I became quite isolated.
My faith became really important to me during this time. My Mum fought my corner with GPs, Education Psychologists, Psychiatrists and MPs. I had a lot of blood removed from my body to try and find some sort of diagnosis! It wasn’t until my mum read an article in the local newspaper about a footballer who had ME that she was convinced that this was what I had.
We were eventually referred to a fantastic and understanding paediatrician in County Durham who specialised in ME. Even though there was very little he could do, he advised light staggered exercise, and supported us to understand that what I had was a very real thing. Years went by and I would have periods where I was feeling much better, followed by long periods of relapse. I had one friend, who didn’t go to my school who was incredibly understanding of my illness.
My mum battled to get me 5 hours of tuition a week instead of 3. One thing that really helped was an active youth group at church and people who became my friends without judging me or questioning my illness, which even a psychiatrist put down to ‘school refusal’ (without asking my school whether I liked to go, which when well I did).
A huge turning point for me was when I was 15. I had been prayed for many times and believed that God would heal me, but seen little change. I had been well enough to attend a large Christian gathering called Grapevine (now One event) which takes place in Lincolnshire on August bank holiday. A band called Delirious were leading the youth worship and two of my friends asked a leader to pray for me. That night I had been sitting at the back of the tent feeling exhausted but the following evening was moshing at the front with my friends. In reality my healing steadily took place over a period of a year and God was faithful.
I went on to re-sit my GCSEs and gained an A-level in photography before working on my dad’s farm for a year and travelling to bible college in Canada. I’ve now been married for 14 years and have two amazing kids, Isobel who is 7 and Elijah who is 4. The verses that have remained with me over the years are from Isaiah 40: 28 Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. 29 He gives strength to the weary and increases the power of the weak. 30 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. I believe God taught me a great deal through my illness. Despite the agonising frustration, and at times even the fear of being healed, because it pushes you out of your comfort zone, I would not now wish to go back and swap my teenage years. I have to often remind myself not to take my health for granted. I feel the greatest thing I learned is that God often calls us to wait on Him, to be patient and gain a sense of dependence on his strength in us. In a world of isolation, self promotion and consumerism we’re called to a life of dependence on a great God. Our times are in His hands. Daniel.[/spoiler]
From 5 years bed-bound to leading a support group and designing websites.
Robin shares his “partial recovery” story.
Intro: I developed ME at the age of 13 and after three years of struggling in and out of school I gradually descended into a pit of severe ME. I was bedbound for 5 years with terrible symptoms almost zero physical and mental ability. Things went from bad to worse and I lost hope of recovery and almost all reason to live. But there was a turning point, and although my recovery has been painfully slow – and faith and hope have really been tested – the journey has contained some real gems of discovery and special friendships which I couldn’t have managed without. I’ve come a long way from feeling almost dead to having about 60% ability and being able to run a support group and work towards starting my own website design business. If you’d like to hear more about my journey read on….
After a cushy, happy and healthy childhood in the leafy English home-county called Surrey, at the age of 13 my life was suddenly turned on it’s head when I developed diabetes and glandular fever simultaneously……
[spoiler title=’Read more’ collapse_link=’true’] Despite a kaleidoscope of symptoms I was determined to try and keep going as normal but I always felt extremely frustrated that my body only seemed to be capable of half of what is normal at best; and at worse I had severe incapacitating headaches, muscle pain, exhaustion and inability to concentrate etc. I was soon diagnosed with ME (myalgic encephalomyelitis) but I was not given any significant medical help.
I battled in and out of part-time schooling for the next three years with little energy spare for a social life but at least I achieved 5 good GCSE grades. Unfortunately my health had deteriorated during the 2nd year of GCSEs – much of which was worked on at home – and this was followed by a bad relapse. No one had suggested, earlier on, that I should have been resting more to help my body to recover.
I was too unwell to do A-levels with my friends so reluctantly I planned to take a year out of formal education and then continue.
If only ME always could be respecter of plans! My health continued to deteriorate over next few years. At first I found a little therapy and enjoyment in hobbies. I was good at painting and enjoyed learning guitar and turning my poetry into songs. I found that expressing myself in creative ways was very therapeutic. At least it was while it lasted…
By the age of 18 I started to get even more severe pain in my head which was made worse very quickly by both physical and mental exertion. To make matters worse I was having increasing trouble with faintness and dizziness and many other symptoms.
The nightmare got worse and worse until in 2000 I was totally bed-bound and in a lot of pain. Worse than this was imprisonment of my mind inside a brain that barely functioned. If tried to read anything I could barely understand what I was reading and after a few minutes of trying, or sometimes instantly, I would get sharp pains in my head. Even talking to someone or looking through so pictures could cause horrible pains in my head. The neurological symptoms were becoming unbelievable and my whole body felt terrible. I became extremely isolated and there was pretty much nothing I was able to do for pleasure.
Not surprisingly I had a total emotional meltdown; I just couldn’t cope with living like that! It seemed that nearly everything had been stripped away and I was little more than existing. In desperation to escape my miserable existence there was moment in my teens when I took an overdose of insulin. But I soon realised that I didn’t really want to die and had to eat loads of sugar to prevent it being fatal. Moments later I remembered that during my childhood I’d been taken to a big and lively Christian church where miracles happened and I had become totally convinced that God was real. I suddenly the idea to ask God for help so I prayed something like “God, if you’re real please help me!” It’s hard to describe what happened next but it was like my room was flooded by a loving presence and it filled me with joy and excitement. I believed it was God and decided that I wanted to have a relationship with him.
I found that from that moment on I was really changing. I found there were more positive thoughts coming into my head and there was an extra strength to choose to go with those positive thoughts rather than the negative ones. I generally felt a lot more peaceful and confident, and found that I was more caring about other people rather than just thinking about myself all the time. This helped me to develop more meaningful relationships with people. Through the first 11 years of ill-health, when it just got worse and worse, I found increasingly that belief in an afterlife was a source of peace and strength. I needed that hope when everyone says, “Life is short” and I seemed to be losing a lot of what are some of the most important years of your life.
Around 2004 I started to gradually improve. There wasn’t any kind of medical intervention but I was having a healthy diet and was trying to pace myself carefully. I’m also very grateful for people’s support and prayers which I believe played a part.
Although my recovery has been painfully slow – and extremely challenging as I’ve missed out on many of the learning experiences that people take for granted – there’s also been a boy-like joy of getting back to things I’ve not done for years, and doing things I’ve never done before. After having everything stripped away even just the simple things like being able to walk in the sunshine and chat with friends now seem like really precious gifts.
In 2009 I started to design websites as a hobby and it now looks like I may manage to become self-employed in this area on a part-time basis which I never would have dreamed of when I was stuck in bed for 5 years. And In 2012 I was able to start this support group with a lot of help from friends, my church, and the charity Wellspring Family Centre. I would like to say big THANKYOU to everyone who has helped me along the way. Some people may not have realised that sometimes even a few words of encouragement have really helped me.
Hazel’s Story – healed overnight of severe ME/CFS ? The unbelievable story!
A transcript of public oral sharing of the story at Wellspring Family Centre in October 2014 (poor quality recording but available on request.)
Intro by Robin
Hazel has been a personal friend of mine for many years through the church in Dereham. I saw how she was a totally healthy adult before she contracted the liver virus cytomegalovirus. It was really sad so see her health get worse to the point of her being mostly bedridden for many months. She would get out the house from time to time to come to church events but I saw her using a wheelchair and knew that she had such bad joint pain that her GP thought she might be getting rheumatoid arthritis. I and other friends in the church were gobsmacked to see how literally overnight she was back to a normal lifestyle. She has been fine in about two years since (time of writing 2015) then She believes God healed her and here she explains in detail how ill she was and what happened.
Hi everyone my name is Hazel and I go to this church here in Dereham. I’m just going to share a little bit of my story with you. Most of life was pretty easy and comfortable. I went to university and got a good job which I really loved and I had a really wonderful boyfriend who is now my husband and life was really good for me.
Then in 2011 I got a weird virus with a cool name which is called cytomegalovirus which no one has ever heard of but it’s not very fun! [spoiler title=’Read more….’ collapse_link=’true’]So basically had like flu for about a week but I didn’t actually recover from that. I was so ill that I couldn’t go to work. I was really dizzy and exhausted all the time but I just thought that it was like a normal illness and everything would be fine and I would get better but I didn’t and I got diagnosed with “Chronic Fatigue Syndrome.” I had really bad pain in all my joints and muscles and was exhausted all of the time. Not just normal tiredness; deep down in your bones exhaustion where I couldn’t even get out of bed for a lot of the time. I had headaches; trouble concentrating; I couldn’t look at a screen or read very much because it would just wear me out.
As you can imagine, going from having a pretty good life – where you’re active all the time doing lots of things – to doing absolutely nothing because you can’t move, is a big shock. I felt quite useless. I was in my mid-twenties and that’s the time of your life when you’re supposed to be full of energy; you be achieving and moving up in your career; you should be making relationships that are going to last the rest of you life. I felt like my life had been put completely on pause. I’d been Christian since I was 18 and I had a strong faith so I believed that God knew what was going on but I didn’t really understand why this had happened to me and what was going on.
Nobody seemed to give me any answers. Everybody I spoke to gave me the impression that CFS was something you didn’t necessarily recover from and everyone I knew who had it had seemed to be ill for a very long time. So I wasn’t feeling very confident. But, I believed that God was in control and knew what he was doing.
My health kind of plummeted and I got to the stage where I was bedridden most of the time. The only time I left the house was to go to church on Sunday. But I believe in the power of prayer so any time anyone offered to pray for me I would take it. Although I was always getting prayed for and nothing would happen at all.
I tried not to get discouraged. And after being ill for about a year and a half, in March, I was at a youth event, and I was kind of crying out to God and saying, “I can’t take this anymore! My life isn’t going anywhere! I feel awful all of the time; I’m on so many drugs to control all the pain. And this isn’t what life should be like. I can’t cope and you have to do something!” And I got this amazing sense that God said to me, “I know. I know what you’re going through.” And if you’re a Christian you know in your head that God knows what is going on. And you know that he is in control; but actually I really felt it in my heart that time. God told me that he saw what was going on in my life and I wasn’t alone.
Again I didn’t improve; nothing really happened. So I just continued as I was. But in May, 2 months later, I went to bed as normal feeling awful; feeling in complete pain everywhere. And then the next morning I woke up completely fine. For the first time in 2 years I had no muscle pain; I had no headaches; I was able to get out of bed straight away without it taking me nearly an hour. I felt completely restored and full of energy. And it was the most amazing thing because that does not happen normally so although I hadn’t been prayed for at that moment I know that it was God because it was a miraculous thing. And since then I’ve been completely fine and I feel completely restored to normal health. It happened about two years ago and life is good. And I can’t explain it any other way than that God did it. And so to give you a bit of encouragement if you’re in that situation that he can heal you. I don’t know why he healed me, or why he waited so long, or why I got ill in the first place but I strongly believe that God can heal and does so I just wanted offer a bit of hope really.