ME Awareness: The Lost Years by Rachel Hill | 10 May 2020

May 10, 2020

The Lost Years by Rachel Hill.

Over 3 years ago, for several months I had increasing insomnia, debilitating fatigue, dizziness, headaches, body aches, swollen glands, and heart problems until I could no longer function properly and ended up in hospital.

Rachel Hill before M.E.

It took several months of extreme illness before I was diagnosed with M.E. (myalgic encephalomyelitis/encephalopathy). 

I could drink fluids and eat simple foods, propped up in bed. I could make it to the toilet a couple of times a day, occasionally only by crawling.

Simply breathing took all the energy I had, my body could do no more. I was permanently dizzy, sometimes sick…

I spent several months like this, after which I started to improve (albeit with many setbacks) very very gradually.

It has taken me 3 years to get to the stage I am at today and I still have a very long way to go.

I am now able to lift the toothpaste tube without it feeling like a 10kg weight and can mostly brush my teeth without it exhausting me.

What is it like?

I continue to be confined to the house. Sitting or standing up for more than 2 minutes makes me very lightheaded, so I spend 23 hours each day lying down. I have near constant brain fog, and sensory overload, especially with noise and motion. I have 24/7 high pitched, screeching tinnitus, which increases in volume if my health worsens.

I can concentrate on a conversation for 5-15 minutes (depending on the day) if my eyes are closed and there is no background noise. I have brain fog much of the time – if someone is talking I try and keep up but I get further and further behind. I try and cover up for myself, but often find myself saying something out of place. I slur words and get words muddled…

On good days I am able (in small chunks) to use a computer for 30 mins, watch easy-going programmes on TV, colour or write, all lying down but all without payback. Doing these things without payback is major, and if I overdo things even just slightly I get an instant headache which doesn’t disappear as soon as I stop. I have to manage my time very carefully.

Rachel today.

My hair and eyebrows have fallen out. I don’t like it, but I am not well enough to see anyone about it. When I still had hair I never had enough energy to wash it, so it was always greasy and felt gross, but still I would prefer to have my hair than not.

My family prepare my meals, do my phone calls, emails, laundry, shopping, housework. They run my bath and washed my hair (when I had some), even so I only have enough energy to have one bath a week, at the most, and following this I need to lie down in silence to recover for an hour. Showering is a complete no go, due to dizziness. 

What I have missed out on and what I miss most

I miss living. I miss my children. I miss being me, I miss my home. I miss my life. 

Prior to being ill I was independent, outdoorsy, and active, and my favourite thing ever was to swim in the sea. I used to love driving, DIY and seeing friends.

I was a busy single mum to 2 young children and was always out and about with them, exploring the beach, the woods, walking and picnics, meeting with friends, going to church, baking, crafting, being ‘mum’. I miss all of these things

I HATE that I cannot be the mum to them I was, and that I want to be. Due to my illness I spend very little time with them (now ages 5 and 6), and when I do I am horizontal on the sofa or in bed.

I have missed out on the last 3 years of their lives. They cannot remember me when I was well. I wish I could take them to school, go for walks, to the park, bake cakes, the everyday things. I would give anything to be able to see them in the school nativity or play, sing in the school choir, or be able to take them out.

I sold my property to pay for all thing’s illness related. I had to relocate, to live near family. I will unlikely ever get a mortgage again unless something miraculous happens in my health.

I bought an electric wheelchair to enable me to get out in the fresh air, but I am too ill to use it. I have tried, but the repercussions of 20 minutes out leaves me lying down, dizzy, for a whole afternoon. 

Helping you cope with severe M.E.
Help with M.E. symptom management.

Adjusting to life with ME

Life as I knew it has been taken away from me, and I still struggle to accept how my life is now. Surely there is more purpose to my life than living like this?

There must be a reason my body and brain aren’t working properly, but I am without a GP who will try and get to the cause of why I am ill. I am isolated and lonely, but ironically I am not well enough to see people or chat on the phone.

I have no social life. Family and friends understand a little, but not really. My mum is the only person who fully understands how my life is now. 

I have had to learn to live within my extremely limited constraints. If I don’t, I very rapidly decline, and I don’t ever want to go back to being anywhere near so severely ill as I was ever again.

I try to take each day as it comes. I can’t bear to think about what I and my children have missed out on. I hate the effect my illness is having on my children, and my parents. I am still ‘me’, but I don’t know if I’ll ever be able to be me again. I am very wistful for a life I cannot live.

Hopes, dreams, and fears

  • I hope to recover, to be 100% well again. 
  • I want to be well so I can bring my children up and have a dog again. 
  • I would love one day to be able to return to Devon and the home I had to leave.
  • I want to live life, not be forced to watch it pass me by.

Not knowing there is an ending in sight, I can’t bear the thought ‘what if I never get well?’ 

Not knowing if I will improve, and if I do, to what extent, is very difficult to live with.

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