ME Awareness: “When my youngest was 11, he asked me if I was going to die. I was horrified,” by Theresa Baynham | 13 May 2020


The Lost Years by Theresa Baynham.

My M.E. journey started in January 2006 after having glandular fever – although I didn’t know I had either. I just thought it was a very bad virus that wouldn’t go away.

Theresa Baynham.

My doctor sent me for a lot of blood tests. They all came back normal. I should’ve been pleased, but I couldn’t understand it. Was I imagining this illness? The test I’d had for Epstein Barr virus had come back positive.

I carried on working, looking after my home and four children. By the end of the summer, I was so ill I could hardly move.

I was sleeping 18 hours a day, crawling up the stairs and being lifted in and out of the bath by my (then) partner, after he had washed me and my hair.

At the end of that year, my GP said I had M.E. (myalgic encephalomyelitis/encephalopathy) and started me on amitriptyline. He also prescribed citalopram because I was, by now, feeling very low. It took six months before I began to feel I could function normally again.

My GP had told me that I would recover within months, not years. I went back to work in May 2007, thinking everything was fine and loving my new healthy self. I weaned myself off the amitriptyline.

However, within a few months, I started to feel really drained and I wondered if I was getting glandular fever again. I spoke to my GP and he said that I wasn’t. So, I started taking the amitriptyline again.

The fatigue lingered but it was manageable. I kept getting sore throats and painful glands, but I thought nothing more of it.

Over the next couple of years my relationship ended, I moved house and other family issues caused a lot of stress.

I was self-employed though, so I was able to work around any issues. I began to struggle to work enough hours to cover the mortgage, but I was getting tax credits, so that helped.

Unfortunately, the feeling of having a virus became more frequent and, with it, I had a lot pain in my muscles, nerves and even in my bones. I would sit in a hot bath, take paracetamol and get lots of rest, but nothing helped.

Gradually these ‘viruses’ became so bad that It felt like I was dying. It sounds dramatic, doesn’t it, but I now know that others with ME have that same feeling. There’s no other illness that has made me feel so bad and lasted so long without anything giving relief.

The next few years are a blur…

“When my youngest was 11, he asked me if I was going to die. I was horrified.”

I carried on trying to work and looking after the home. My youngest was now my only child at home.

I spoke to my GP. He gave me some literature about M.E. and prescribed naproxen as well as an increased doses of amitriptyline.

When my youngest was 11, he asked me if I was going to die. I was horrified. I felt so guilty, I hadn’t talked to him about this thing that was leaving me frequently debilitated.

I had to give up my social life, so I was able to work enough hours to qualify for tax credits. In 2014, I asked my doctor if there was anything else that could help.

He said that I was managing my symptoms well and there was nothing more he could do. I pushed the issue and he said he would refer me to a clinic.

Specialist Referral

The process began with him completing a questionnaire, then sending me for more blood tests, then me filling a questionnaire and then a 45-minute telephone consultation from someone at the clinic.

At the end of this consultation, I was told I fitted the criteria for the clinic. The appointment came by post.

Cutting a long story short, I went, met lots of others with the same symptoms, felt some relief that I wasn’t imagining it, asked lots of questions, and drove home in tears realising that I probably would never recover.

Over the next few weeks, I tried to process it all, chatted to friends and family and explained everything to my son. This was the beginning of a grieving process, which I’m still experiencing in a kind of roller-coaster way.


That was six years ago. Since then I’ve got steadily worse, less and less able to work, missing out on all social outings, not able to take holidays due mainly to lack of finances.

Life with M.E.

But I’d been away for two nights to a cousin three hours drive away, and when I came back, I crashed badly for over a week – another big dent in the finances.

I cut my working hours to 2.5 hours a day in 2016, but was still crashing pretty much every other week, I handed my notice in, then watched my finances drop from £900 a month to £73 a week in ESA.

Now, I’m deemed unfit for work by DWP, so I get a disability income guarantee as well, which allows me to claim a warmer home discount. Essentially I’m trying to live on £500 a month, plus a little rent from my son.

I don’t care so much about the money, honestly, but my life is unrecognisable. The debilitating fatigue has left me almost, but not quite, housebound.

I’m fed up, lonely, frustrated, sick of feeling like a I have a permanent virus and hangover, joint and muscle pain, headaches, and sensitivities to so many things, including foods and medications.

I had to swap citalopram for duloxetine as I was reacting badly to it. Light, sound and smells affect me. I can no longer read a book and watching too much TV leaves me needing to go to bed for a few hours. I often cannot prepare healthy meals and have gained a lot of weight as a result.

Loss

I wanted to travel once my children were all grown up, visit my brother in Australia, some family in Canada and Gibraltar. Maybe I would’ve met a nice man to enjoy special times with.

And then there’s my first grandchild. I’ve missed out on all the things I wanted to do with her. Now I can only sit and watch TV with her or do some colouring. She asks me why I’m always ill. I’m 56 years old and I feel my life is over.

I’m rational, but the thought of spending the rest of my life like this has resulted in thoughts about euthanasia. I keep going for my children and my granddaughter as I would not do anything that would hurt them.

I keep that thought in my head, and the virtual chats I’ve had with some lovely people who are also suffering with this cruel and inexplicable illness.

ME Awareness Week Monday 11th – Sunday 17th May 2020

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