Celebrating Life Despite Acute Disseminated Encephalomyelitis (ADEM)

Today I am honoured to share Sarah’s chronic illness story. She has been battling Acute Disseminated Encephalomyelitis, also referred to as ADEM, for decades. This interview is part of an ongoing series where we meet warriors from around the world who share their struggles and victories as they navigate life with various chronic illnesses and invisible disabilities.

I hope this series will encourage you and help you to find answers and community. I know that many of the things which I now rely on to manage my condition came from other patients with more experience. I hope that, by sharing these stories, newly diagnosed warriors will feel supported and less alone.

Please Note: these posts are meant as a testimony of personal experience and are not to be considered as medical advice. Please do your own research and consult with your doctor before making any changes to your care plan.

Acute Disseminated Encephalomyelitis, Interview With Sarah

Tell us a bit about you

Hi, I’m 49 and have been married to my lovely husband for 25 years, but we have been together for 33 years and have a beautiful 25 year old daughter. I live in Northamptonshire, England UK.

I love to crochet, you will find me with hook and yarn in hand every day, I want to get back into my books, I love to escape in a good book. I love animals, all of them haha.

We have a little dog called Tilly, two snakes called Boris and Mr Fogly we also have 6 tarantulas, used to be scared stiff of spiders. I’m a big horror film fan, love spending the evening in front of the fire with my hubby, Tilly, crochet and a good scary film. Plenty of tea and biscuits are always nice to.

What’s your proudest achievement?

My beautiful, kind hearted daughter.

If you were awarded a 5 minute international TV broadcast, what would you tell the world?

To grow up! Learn to get along and sort this beautiful planet out.

When you were a child, what did you want to be when you grew up?

A vet.

In what ways have you changed as a person in the last year?

I have lost a lot of self confidence.

If you could choose one, what would your superpower be? Why?

Teleportation, I could get just where I wanted in the blink of a eye!

What It’s Like Living With ADEM

1. What are your main symptoms?

My main symptoms of ADEM are chronic nerve pain, numbness from the chest down, brain fog and tiredness that is overwhelming. The physical side is very much like MS as I will continue to get worse as I get older.

2. Briefly describe the process you went through to get your diagnosis.

Started with a cold when I was 15, three weeks later I woke up paralysed from the waist down. I was taken into hospital where no one knew what was wrong. I was transferred to Oxford that night, the next day I was paralysed from head to toe and was put on life support.

After three weeks and many doctors later they came up with ADEM, my immune system had attacked my brain and spinal cord. I was put on high dose steroids, and a week later I woke up, not knowing where I was or what was going on.

Because ADEM was unheard of back then a lot of damage had been done, recovery was slow and painful, learning to feed myself and then walking, everything we take for granted. I can walk, but have to use a walker and have lots of other problems.

3. What did a typical day look like before you fell ill?

School, weekends out with friends or my boyfriend at the time. Karate twice a week.

4. What does a typical day look like now?

Slowly get up, sit and wait for medication to kick in, shower and get dressed with help from my hubby. Get settled in a chair and crochet, watch tv or both most of the time. I have a sleep in the afternoon, then more of the same.

5. What are some of the helpful adjustments you have made at home or at work?

We have a stair lift, downstairs toilet, wet room and the garden has been adjusted so I can get out with my walker when the weather is nice.

6. How do you celebrate life despite your illness/disability?

I celebrate the fact that I survived, many don’t. I have learned to do things I probably wouldnt have because I have had the time to. I have the most wonderful husband and daughter who is my world.

7. What do you wish the general public knew about your condition?

That I does happen! There is so little publicity for Encephalitis.

8. What advice would you give somebody who is newly diagnosed?

Rest!! Don’t rush things, as much as you want to, listen to your brain.

9. Where can people go to find out more about your condition?

Online: https://www.encephalitis.info/
Book: Brain On Fire, by Susannah Cahalan (view on Amazon)

Connect with Sarah

You can find Sarah on Instagram where she shares all her lovely crocheted items.

Sarah standing in front of a brick wall. She has pink hair and a black top. Title reads: Celebrating life despite Acute Dissemminated Encephalomyelitis. Interview with Sarah.

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If you would like to share your chronic illness story here, please visit this page and complete the interview form of your choice. I look forward to sharing your story – Char