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30 Things About My Invisible Illness You May Not Know

September 2013 004

The illness I live with is: anti NMDA-r encephalitis

I was diagnosed with it in the year: 2011. June 20th was the day I had my first seizure. I spent the next six months in hospital.

But I had symptoms since: a few years previously, although these were mainly seen as psychiatric at the time.

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The biggest adjustment I’ve had to make is: Everything, and the most difficult adjustment is that dreaded thing called pacing.

Most people assume: I am ‘better’ or that I am lazy. People are also prone to think that they can catch my illness, which is not possible as it is autoimmune.

The hardest part about mornings are: The hangover from the sleeping tablets and motivating myself to get out of bed for the day. Waking up every morning and having to come to terms with my ‘new’ life.

My favorite medical TV show is: House, before I had NMDA I thought that everything on it was so rare I would never know anyone with anything, then I realised my illness was on one of the episodes.

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A gadget I couldn’t live without is: My macbook. I bought it for myself as a treat after finally getting back to some paid work.

The hardest part about nights are: Insomnia, the steroids make me buzzy and I have so much to think about all the time. It is also the time when I feel the most alone.

Each day I take between 5 and 10 pills & vitamins, although I am also the guniea-pig for a new chemotherapy type drug.

drugsplasma exchange

Regarding alternative treatments I: will try anything. I love tigerbalm and often use homeopathy to help with my anxiety.

If I had to choose between an invisible illness or visible I would choose: visible, every time.

Regarding working and career: I worry that I will never reach my goal to work as a Neuropsychologist, but have found volunteering to be extremely rewarding.

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People would be surprised to know: that I find it difficult to always look on the bright side and can spend an entire week in bed.

The hardest thing to accept about my new reality has been: that I am no longer the person I once was and I can no longer do what I used to do with ease.

freshers weeeek

Something I never thought I could do with my illness that I did was: run a marathon, but I proved myself wrong in April 2015, that along with the half marathons and 10 mile runs have shown me just how strong I am.

Paris Marathon IMG_7557 great south run pic 10314488_10153277131527619_5368516323099603950_n

The commercials about my illness: Don’t appear to exist…

Something I really miss doing since I was diagnosed is: having my freedom.

It was really hard to have to give up: my intelligence.

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A new hobby I have taken up since my diagnosis is: running. I had never run more than a mile prior to my illness.

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If I could have one day of feeling normal again I would: get on a plane to Australia to see my cousin without having to worry about having a seizure.

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My illness has taught me: that I am stronger than I would have ever imagined.

Want to know a secret? One thing people say that gets under my skin is: mess. I cannot deal with anything being out of place. That, and people that don’t even make an attempt to understand.

But I love it when people: treat me the same as they did before.

liz and emma running

My favourite motto, scripture, quote that gets me through tough times is: everything happens for a reason.

When someone is diagnosed I’d like to tell them: to take each day, one day at a time. Recovery is a long and difficult process.

Something that has surprised me about living with an illness is: how it makes people more likely to open up to you, whatever their age. I think that people can see that I have empathy for what they are going through now that I have been through so much myself.

The nicest thing someone did for me when I wasn’t feeling well was: take me skiing after my plasma exchange for some fresh mountain air.

Skiing Ruth Dad and Liz

I’m involved with Invisible Illness Week because: it is important to me that people have a better understanding of what it is to live with an illness that cannot be seen.

The fact that you read this list makes me feel: hopeful for the future. The more people that are aware about the difficulties of living with an invisible illness the better.

  End of Summer 2013 322

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