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

Introduction:
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!

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 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.

Ann Starkie

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.

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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]