ME sufferer
Judith Meagher

Age: 39

Diagnosed: 2003


Since suffering with this illness I have reached an all time low in my life.  

At 36, I was a happy-go-lucky Mum who was mad enough to try anything, go anywhere and the sky was the limit. That changed overnight, back in August, when I got a virus and haven't been the same since. I was in bed for two weeks constantly, waking only for food and the toilet. I was absolutely exhausted and have been left with extreme fatigue which affects me every day. 

I have to rely on my partner and my children (luckily they are 16 and 11 and are able to help). This is really hard for me. I was so independent (being a single parent for the last 8 years), working full-time and running a home, just like many other Mums. I was the 'rock' for my children and that rock just crumbled overnight. They have never seen me like this so it is very hard for them too. 

I have had lots of very low days, crying and despairing of the illness. It is so frustrating, only being able to do a fraction of what you are used to. The mind wants to carry on but the body can't.  

I can't plan anything as I cannot last more than a few hours without rest. We haven't been out for the day for ages and I haven't lasted a full day since September. Hard to imagine, but true. I have to pace myself, be patient and be grateful for being able to do what little I can each day. This is extremely hard. 

I am taking herbal supplements to help me cope with these low times and I have fantastic support but I know I am really lucky. I know there are many sufferers who do not have anyone and often feel suicidal as there seems to be no way out. 

I am normally a really positive person and this has helped me through, yet I still find it hard to accept that I may be like this for a long time. I have friends who have had the illness for more than 10 years and I can't bear to think of that.

The worst bit was accepting that there was something fundamentally wrong that I couldn't fix. I have never come across this in life before. I always managed to 'fix' even the worst situation. This one has beaten me....... 

As for my job, I have been off sick for 6 months now and am signed of until 22nd May. I am likely to be signed off again as nothing much has changed. My money has dropped to half-pay, which is an added problem. 

Until I can last a full day of reasonable activity, I cannot even contemplate returning to work. I have a really high profile, demanding job which I love and the thought of having to give it up due to my illness is very upsetting. I keep hoping that I will wake up one day and I will be better. 

I have worked really hard to get this job and having to give it up will affect my pension, my lifestyle and my children's lives dramatically. We will have to reconsider our financial situation and future plans.

My employers are unsure about what to do as there is little guidance so they have taken the view to 'think of the worst' i.e. that I won't be able to come back to my job and will have to find a lower paid job with less demands on me. This only makes things worse.

The future…..

There is no cure and therefore no treatment offered by the NHS. As a result I have joined thousands who have tried every avenue desperately trying to get better, spending over £1000 of my own money and having ongoing expenses for supplements which have been trialled and recommended. All I can see is an ongoing battle with the symptoms - the main one being fatigue - and spending more and more money in the hope of getting better. I know I am not as affected as some but I still find it hard.

Although my GP has been very helpful (he diagnosed the illness very quickly, has referred me to a specialist and asked for Cognitive Behaviour Therapy for me) he cannot give me a timescale or a prognosis. 

There is a desperate need to find the cause of this illness and give sufferers a chance of getting their life back. In the meantime, there needs to be a standard 'help package' as the only information I have is what I have found from the internet or from other sufferers.

There seems no end to this at the moment so I join all those who are demonstrating today as one of a large number of highly successful, intelligent and able people who have been struck down and had their lives turned upside down, often overnight. We are willing to work and want to get better, rather than rely on benefits but that is all we are offered.

I hope this demonstration will further highlight the plight of ME sufferers and their families and reiterate the need for more research into the cause and, ultimately, a cure in the near future.