March’s installment of the guest post series: Confession of a Zebra is here. Today, we will learn more about Ruth and her story.
Confessions of a Zebra: #2 Seizure Disorder and Me – Ruth
1.What is Seizure Disorder? Seizure disorder is a neurological condition which cause non-epileptic seizures. Although, different from Epilepsy, it is treated with Epilepsy medication and at a glance can resemble symptoms of it.
2. What are the main symptoms you suffer from?
- Chronic pain
3. How do you manage Seizure Disorder on a day-to-day basis?
I work from home and I don’t leave my house alone. I try to do a bit of exercise and take my recommended medication.I have to be so self aware of my energy levels and whether I am somewhere with seizure triggers.
4. In what way has the NHS supported you?
The NHS has provided multiple tests, medications and consultancies for me, along with counselling when needed. I cannot count the number of times I have been injured by seizures and been taken off in an ambulance- I owe my life to the NHS, without a doubt.
5. How was your journey to diagnosis for Seizure Disorder?
My seizures took three years to get diagnosed and that was horrible in itself. Heart monitors, ECGs, tilt table tests, I went through the works. Currently i’m in the middle of being diagnosed with suspected Fibromyalgia so I have been having nerve testing. I’m just hoping for some answers!
6. What have you learnt about your condition since being diagnosed?
That the word ‘seizure’ scares people and incorrectly saying ‘faints’ or ‘blackouts’ makes them more comfortable, even though that isn’t what I have. That having a seizure feels a lot like being electrocuted in the brain! I have learnt that pushing yourself to the limit is more harmful than good. Pacing is vital for me to have a healthy(ish) life and compparing myself to a healthy person doesn’t do anyone any good.
7. How has Seizure Disorder changed your life?
Seizures have taken away my chance to drive, some of my independence and made me feel guilty for being disabled as I feel like a problem for people. I’m trying to relearn that that isn’t the case, but it’s tough. I’ve learnt to fight my corner, when my University did not support me and again in the working world.
8. What perceptions changed since you was diagnosed with Seizure Disorder?
I have learnt a lot about invisible illnesses and the importance of not assuming someone is healthy or able bodied. A bit of consideration and kindness goes a long way.
9. What information do you wish you was given when you was diagnosed?
I wish someone had been upfront about how this might be for life. I wish I had been told about disability support for students, free bus passes and support groups. I was so told to get on with it that for years I felt very isolated by my condition.
10. Have you gained any new hobbies since being diagnosed with your illness?
I have taken up yoga as a form of gentle exercise and recently candle and soap making! I have a lot of hobbies and some of them I have had to do a lot less due to my health so it’s always nice to find new options.
11. What emotional support do you have for Seizure Disorder?
My partner is fantastic and I am blessed with very understanding friends. I have made use of therapy and counselling services throughout the years when needed and fully recommend them.
12. What are the most challenging parts about Seizure Disorder?
Not feeling physically safe to go out by myself. Having uncontrolled seizures is scary and really impacts your life.
13. What advice would you give someone newly diagnosed with Seizure Disorder?
Never accept ‘You will grow out of it’ or ‘it is just your hormones’ as a reason for being ill. Push for the help and answers you deserve.
14. What are your plans for next year?
Finding better ways to manage my health with my career and learning to be kinder to myself when I am unwell.
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