SUPER LATE POST!
I apologies I am extremely late with my Outside Looking In and Confessions of a Spoonie but I will be publishing them both today and they are both from Katie Smedley and her fiance. So sit back and enjoy both sides of Katie’s story, through her eyes and her partners.
Connect with me at: katiejunesmedley.wordpress.com
What condition/s do you suffer from and when were you diagnosed?
I have chronic nosebleeds, which I have had all my life, a heart murmur, which was picked up and diagnosed in the early 2000’s, a rare brain illness called Anti NMDA Receptor Encephalitis, which I was diagnosed with in late 2011 when I was fourteen and then I was diagnosed with a leaking heart valve at one of my routine heart check-ups not long after being diagnosed with Anti NMDA.
What are the main symptoms you suffer from?
The main symptoms I suffer from are seizures, memory loss and general illness. (The Anti NMDA leaves you with no immune system so you catch everything so easily and even a common cold leaves you in bed for weeks).
What 3 things have you learned about your condition since being diagnosed?
Stressing makes things worse. Especially seizures. In some cases, people don’t have the same symptoms as you, some have it worse and some have it better. Some have died, some have been misdiagnosed and others have been put into mental hospitals. Anti NMDA can cause tumours.
In what way has the NHS supported or not supported you?
I think the NHS have supported me by allowing me to have treatments, some medication and regular check-ups, whether those treatments and meds worked or not. I can’t really remember a lot of it.
What is the hardest part about your illness, in your opinion?
One of the hardest parts about my illness is that I can’t remember things like I used to. If I have a seizure, whatever I did up to two weeks beforehand is forgotten. I find it hard to learn things like how to cook something for example as my memory is like a goldfish’s. I even struggle to remember people’s names sometimes which make me feel so bad, especially if they’re close family or friends.
List 3 phrases you hate hearing off other people about your condition.
- “You can get out of bed, come on! Stop being lazy!”
- “You’re not sick, you’re making it up.”
- “You just can’t be bothered”
List 3 things you wish people would say/do instead.
- Ask if I need help.
- Offer to get meds from the pharmacy or somewhere to help me kind of manage the pain/complete everyday tasks.
- Accept that there are some days where I can’t do anything.
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
Not really, I just try to get as much done as I can taking breaks in between when I become breathless, feel like I’m going to faint and/or am tired. I tend to rush through things to try to get the majority done though.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
I have picked up writing again. I used to enjoy it in school, a long time ago, I loved story writing. Then when I went to college I stopped. I now have a blog, write to pen pals, etc. I also love photography.
What do you do? Work, study?
When I first got ill, I was in education but have since had to stop going due to illness. As of right now, I am out of education and unemployed.
What are you plans for the future?
Well, I am engaged right now. The wedding is this summer, then off to explore Italy with my new husband!
Is there anything you would do differently since being diagnosed, and why?
I’d try to check in with myself every time I felt myself feeling worse and let people know. I don’t like worrying people, so even if I was feeling like utter poop I wouldn’t let anyone know. I’d act normal and get on with things and kind of hope that it’d be like a fake it til you make it situation, but it always made me feel worse.
Has your illness taught you anything about life?
To try to take every opportunity I can before I get too sick not to.
What advice/information do you wish you were told when you were first diagnosed?
Everything that you have forgotten how to do (sit up, talk, feed yourself, walk, etc..) will come back to you over time. Do not worry about it. Do not stress and cry that you can’t do something.
What would be your main piece of advice for people who has just been diagnosed with your condition?
Do not stress about missing school, college or work. That will make it worse. Take your time, rest as much as you can. Your head/limb movements will pass or slow down over time, you will learn to do everything you used to do and more all over again and it will all be okay.
- Since I was awfully late with my blog post, click here to see my Late Outside Looking In post from Katie Smedley’s fiance!
- TOMORROW make sure you head over to Amy’s blog to read her next Outside Looking In post and to catch up on what she has been publishing.
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