Epilepsywarrior (she/her)
@nicepilepsywarrior.bsky.social
#Epilepsy #Autistic
Sadly retired from #NHS due to health, enjoy walking, gardening or just watching the wildlife
**No DMs from new followers please**
Sadly retired from #NHS due to health, enjoy walking, gardening or just watching the wildlife
**No DMs from new followers please**
Darn it. It’s now less than 7 weeks til sEEG #epilepsy surgery and the only thing I could try and control was my weight. My #autistic brain decided ages ago I needed to be definitely below 12stone and I’m stuck at 12st6lb. (I was 14st so I know I’ve done great but below 11st is healthy for me).
January 17, 2025 at 8:03 AM
If you can support this, it will mean more than you can imagine. Doing this for myself and my daughter with epilepsy.
www.justgiving.com/fundraising/...
www.justgiving.com/fundraising/...
I'm Walking 50 Miles in February to fundraise for Epilepsy Action.
Help nicola Adamson raise money to support Epilepsy Action
www.justgiving.com
December 26, 2024 at 10:29 PM
If you can support this, it will mean more than you can imagine. Doing this for myself and my daughter with epilepsy.
www.justgiving.com/fundraising/...
www.justgiving.com/fundraising/...
Had a bit of a break from here and the ‘other place’ and it did me good. By way of update I’ve seen neurologist and sticking with cenobamate (no meds working) until sEEG 6th March. Will be having updated MRI scan with contrast and CT scan, before Mar, as part of surgical planning.
December 15, 2024 at 12:33 PM
Had a bit of a break from here and the ‘other place’ and it did me good. By way of update I’ve seen neurologist and sticking with cenobamate (no meds working) until sEEG 6th March. Will be having updated MRI scan with contrast and CT scan, before Mar, as part of surgical planning.
Stepping away from social media for a bit - just finding everything too political and negative, at least that’s my perception at the moment
December 5, 2024 at 10:24 PM
Stepping away from social media for a bit - just finding everything too political and negative, at least that’s my perception at the moment
As it’s the start of advent tomorrow, what family traditions do you have at Christmas? Ours is a papier mache homemade snowman, that gets filled with sweets by 🎅 . She’s looking a bit worn and batterred but wouldn’t be the same without her!
November 30, 2024 at 12:28 PM
As it’s the start of advent tomorrow, what family traditions do you have at Christmas? Ours is a papier mache homemade snowman, that gets filled with sweets by 🎅 . She’s looking a bit worn and batterred but wouldn’t be the same without her!
Just feeling sorry for myself today. Tired, focal #seizures, still feel pre-ictal and latest meds not worked for me (had to stop and go back to cenobamate for now). Took a clonazepam in hope of seizure free sleep tonight #EpilepsyAwareness
November 29, 2024 at 7:21 PM
Just feeling sorry for myself today. Tired, focal #seizures, still feel pre-ictal and latest meds not worked for me (had to stop and go back to cenobamate for now). Took a clonazepam in hope of seizure free sleep tonight #EpilepsyAwareness
Add in #autism (not uncommon alongside #epilepsy) and it’s pretty stressful, no matter how much you want to spend time with those you love 💜
For those with memory loss, I see you this #Thanksgiving; the anxiety you have going into tomorrow. Will you: remember faces/names, struggle to reminisce with family while pretending to know the stories, be so overwhelmed you need to leave? It’s ok to feel this anxiety. 💜 #epilepsy #memoryloss
November 29, 2024 at 6:35 PM
Not feeling right today- preictal weird feeling. Ignored this on Tuesday and had a horrible focal whilst walking dogs. So today they are going to hate me but going to listen to myself and stay home. Sorry dogs 🥹 #EpilepsyAwareness
November 28, 2024 at 8:31 AM
Not feeling right today- preictal weird feeling. Ignored this on Tuesday and had a horrible focal whilst walking dogs. So today they are going to hate me but going to listen to myself and stay home. Sorry dogs 🥹 #EpilepsyAwareness
Reposted by Epilepsywarrior (she/her)
#Epilepsy is protected under the American Disability Act (ADA), meaning epileptics cannot be discriminated against. This happened only 34 years ago! Learn about the ADA & what it offers to anyone with a disability:
www.ada.gov
#invisibledisability #epilepsyawareness #medsky #neuroskyence
www.ada.gov
#invisibledisability #epilepsyawareness #medsky #neuroskyence
The Americans with Disabilities Act
Disability rights are civil rights. From voting to parking, the ADA is a law that protects people with disabilities in many areas of public life.
www.ada.gov
November 23, 2024 at 3:13 AM
#Epilepsy is protected under the American Disability Act (ADA), meaning epileptics cannot be discriminated against. This happened only 34 years ago! Learn about the ADA & what it offers to anyone with a disability:
www.ada.gov
#invisibledisability #epilepsyawareness #medsky #neuroskyence
www.ada.gov
#invisibledisability #epilepsyawareness #medsky #neuroskyence
So after being refused a beauty treatment on grounds of having #epilepsy and suggesting that is direct disability discrimination in a FaceBook community chat, I’ve just had a barrage of people arguing with me. So sad that our condition remains so misunderstood 😢. I didn’t need that stress today 😢
November 26, 2024 at 4:39 PM
So after being refused a beauty treatment on grounds of having #epilepsy and suggesting that is direct disability discrimination in a FaceBook community chat, I’ve just had a barrage of people arguing with me. So sad that our condition remains so misunderstood 😢. I didn’t need that stress today 😢
Reposted by Epilepsywarrior (she/her)
We have heard people say they don't know anyone else who has Epilepsy. You're invited to meet more at our virtual support group this afternoon. Anyone with #Epilepsy (or their carers) is invited. #EpilepsyAwarenessMonth
brainablaze.com/epilepsy-sup...
brainablaze.com/epilepsy-sup...
PST Epilepsy Support Group Session - Brain Ablaze
If you are looking for support, we have it. Our PST Support Group Session meets every month on the 26th at 6 PM PST | 9 PM EST. We hope to see you there!
brainablaze.com
November 26, 2024 at 2:29 PM
We have heard people say they don't know anyone else who has Epilepsy. You're invited to meet more at our virtual support group this afternoon. Anyone with #Epilepsy (or their carers) is invited. #EpilepsyAwarenessMonth
brainablaze.com/epilepsy-sup...
brainablaze.com/epilepsy-sup...
Darn it - was just thinking how I’ve had a lovely #epilepsy seizure free stretch, only to start with a cluster of focal impaired #seizures today. The ones where I look fine but inside my brain gets scared and confused; hate these ones. Very tired but scared to sleep as on my own 💜
November 26, 2024 at 12:03 PM
#EpilepsyAwareness what’s the worst part for you? I hate the scary confusion of focal #seizures and after a focal to bilateral tonic-clonic (#FTBTC), for me, there’s a minimum 24hrs of severe headache, vomiting and sleeping to follow.
November 26, 2024 at 6:42 AM
#EpilepsyAwareness what’s the worst part for you? I hate the scary confusion of focal #seizures and after a focal to bilateral tonic-clonic (#FTBTC), for me, there’s a minimum 24hrs of severe headache, vomiting and sleeping to follow.
Reposted by Epilepsywarrior (she/her)
November 26, 2024 at 5:35 AM
Got a new date for my stereo EEG (invasive telemetry). The surgery will be on 6th March and then 1-3 weeks monitoring seizures. Feel relieved that I’ll finally get some answers 💜💜
November 25, 2024 at 7:18 PM
Got a new date for my stereo EEG (invasive telemetry). The surgery will be on 6th March and then 1-3 weeks monitoring seizures. Feel relieved that I’ll finally get some answers 💜💜
Reposted by Epilepsywarrior (she/her)
November 22, 2024 at 2:07 PM
Did our first family cruise this year. Everyone loved it (incl 2dd #AuDhD) and I really wanted to, but few quiet places to escape too and the stress of waking up somewhere different each day (sometimes unexpected due to weather) was stressful & overwhelming #autistic. Anyone #autistic got advise?
November 22, 2024 at 1:52 PM
Pretty sky, especially as this is looking South (so a reflection of the rising sunlight). Simply taken on phone through my kitchen window
November 22, 2024 at 7:52 AM
Pretty sky, especially as this is looking South (so a reflection of the rising sunlight). Simply taken on phone through my kitchen window