Thursday, 4 February 2016

Return to Work after M.E

many thanks to Jackie from for writing this post:

Better known as Jackie, I'm 45 and live in Cornwall with my two grown-up daughters and our
menagerie of animals. My older daughter has cerebral palsy and epilepsy, and volunteers for a local
charity bookshop. My younger daughter is a Legal Secretary, she owns horses and I love helping her
with them and riding with her. Family and animals are my life. My other hobbies include reading and
films. I'm currently setting myself up as a Virtual Assistant, but more about that later.
Life has changed a lot over the last few years. In fact I would say my life now is almost
unrecognisable compared to what it was.

** You may not have all of these symptoms!**

In November 2007 when I was 39, I was working part time as a kennel/cattery assistant, and came
home one day feeling like I had the flu coming. That night the headache started. I say headache,
but it was more like a knife was being repeatedly stabbed into my skull and twisted. Aside from the
caesareans when I had my daughters, it was the most excruciating pain I have ever felt.
The doctor I saw the next day sent me home after telling me I had a migraine. By this time I was
constantly vomiting and had a very high temperature. My mum arranged to take me into hospital,
where they suspected meningitis, and I was given a lumbar puncture at 3am to confirm. I was in
hospital for 5 days.
After several months of recuperating I went back to work part time, but never felt quite right. I
carried on with life, looking after home, children and pets, and got married to my partner in July
2009, and the same month I started a new full time job. I had a social life and friends. I still felt tired
a lot of the time, and my memory was becoming a family joke – my younger daughter took full
advantage! I just put it down to being busy with life though, and never imagined it had anything to
do with the meningitis.
I loved my new job but it was quite demanding. I had a lot to learn. I started to feel even more tired
all the time, with lack of energy, terrible headaches, nausea, lessening appetite, weight loss and
insomnia. Again, at first I put this down to being busy. The memory loss became more noticeable
too, so I started visiting my doctor. I felt that at just 41 I should have been able to cope with life’s
I had a full battery of tests which all came back negative, so I was referred to a Consultant
I was diagnosed with Myalgic Encephalomyelitis (ME/CFS) in December 2009, just over 2 years after
I had meningitis. The consultant believed that it was as a result of the meningitis, gave me some
advice and a prescription. For the first month I had several different changes of medication to take
day and night, which made me feel even more terrible, so I stopped taking them altogether – not to
be advised!

My bosses at work were great to start with, and allowed me to reduce my hours to a more flexible,
manageable level. Every couple of months though I would become completely physically and
mentally exhausted and would have to be signed off sick for a week or two to recover. I didn’t realise
it at the time, but I was in the terrible boom and bust cycle, which is so damaging to the recovery or
management of ME. Having rested, I would go back to work and my normal routine, and the cycle
would start again.
My marriage ended towards the end of 2010, and I became even more unable to manage my life.
All my energy was spent at work, I would come home and sleep, have no energy for my family,
my animals, or a social life. The following September my younger daughter was a passenger in a
car accident, broke her arm severely and had to have an operation to fit metal plates. In the same
month, my mum went in hospital for a routine operation, and from then on was in & out of hospital
and I watched her decline from a very strong woman who took care of me into a mere shadow of
herself. She wasn’t the same person, I’d lost my best friend, the person I would talk to about how I
felt about Helen’s accident and her own illness.
It was at this point that I decided to take voluntary redundancy. There was no way on earth I could
cope with working any more. My own health was getting worse, and there seemed to be nothing I
could do about it. I was a mess.
My doctor referred me for Cognitive Behavioural Therapy to help me manage my ME, and then I
was also referred to an NHS-run ME Management Plan (MEMP for short) in December 2012 by my
Occupational Therapist. This was to be my turning point!
The MEMP course consisted of 7 weekly group sessions of 3 hours a time, led by an ME-specialist
occupational therapist and a psychological therapist. It focussed on an all-round approach to
accepting and managing ME. The thought of going to these sessions absolutely terrified me – me
with my social phobiaagoraphobia and all my anxieties as well as the ME!
Somehow though I managed to attend all of the sessions, and it was the best thing I could have
done! I was able to set goals, which I have since attained, and have set new goals.
One of my goals was to start some voluntary work, as part of my phased return to work. I
volunteered for a couple of months at a local animal rescue centre, but at the time found this too
physically demanding, so instead I took on the role of voluntary Advocacy Assistant (office-based) for
a local mental health charity. I’ve been there for 8 months but unfortunately they have now closed
due to lack of funding.
I’ve been looking for other voluntary or part time work, with not much success so far. I want to
work but I also need to be realistic, and the need for flexibility has become my highest priority. So I
decided to put my administrative skills to use working from home, and am in the process of setting
myself up as a Virtual Assistant – this will cut the need for tiring travelling to and from work as well
as give me the flexibility I need. I’ve been gradually working towards this goal, and plan to launch my
new business in July. Take a look at my website and let me know
what you think!
I still have to ‘pace’ myself and everything I do, if I don’t I pay the price. I find it harder to regulate
what I do now since I’ve been feeling generally better and have had two relapses; one last year after
3 or 4 months of feeling ‘great’ (relatively) and thinking I was ‘better’… Now I’ve had to admit I’m
going through one again, after a couple of months of overdoing it. I’d had the days where I could
look back and say ‘OK that’s because I did such-and-such’ and obviously I’m used to running on half
power but for the whole of this month I’ve been feeling worse and worse, permanently exhausted,
constant sore throat, headache and that feeling of flu coming, I’m forgetting things and making
mistakes, and I really hurt all over. I was diagnosed with arthritis several years ago so I don’t know
whether any of this is to do with that taking a turn for the worse, I don’t like to blame everything on
ME.. So I have a doctor’s appointment later in the week to see what’s what.
In my opinion, I don’t think you ever ‘get better’ from ME, you just learn to accept and manage it.
In the meantime, I take each day as it comes, I’m thankful for what I have and try to enjoy my life. It
can be really difficult at times to stay positive - but that’s the key! Tomorrow is another day :)