0

OMG, I have an appt!!!

4 days ago we had the telephone appt with my GP.

It lasted less than 4 minutes & basically consisted of her being confused and asking my partner if “things had got worse” (she couldn’t understand why I’d been sent to A&E or why she’d been told I needed an expedited neurology appt. When she saw me in person a few months back she said I couldn’t be having seizures as I wasn’t ‘dropping to the floor’, and during a video of me having a seizure that we showed her she said “Well what am I supposed to be looking at here? It just looks like you’re watching television” 😑)

Anyway, because we’d provided evidence from the hospital that they wanted her to try speed up my appt, she said she’d phone the hospital and try.

Lo and behold, today I got a letter through the door and early next month I have an appt with a neurologist 😃

I actually can’t believe it!! I’m so nervous about it though haha.

Does anybody have any advice for phoning the hospital to ask if they can provide a room with dimmer lighting for me…? If I have to sit in a room with fluorescent lighting I’ll end up having back to back seizures, and be unable to talk, think, feel sick, confused etc…any advice appreciated!

My happy face 😉

Advertisements
0

But you don’t look sick / disabled

This was me earlier this evening after a fairly small seizure. 

I’d come around a few minutes before, covered in drool, and I was totally out of it. Epilepsy ISN’T ‘just seizures’…all my seizures have a recovery time, from a few minutes to a few hours, and they often leave me exhausted.

This is why I get pissed when old people tut at me or comment for sitting in the priority seating of a bus – I have an INVISIBLE disability, judge not!!

0

A really bad day for seizures…

Bleh.

My partner phoned our GP surgery today, because A&E informed us in the complaint that they would electronically send my GP a message telling her to expedite my neurology appt. We hadn’t heard anything, so he called to ask what was happening.

First the receptionist refused to talk to my partner about it, even though TWICE we’ve taken in a signed form stating he can speak on my behalf, and I was actively seizing at the time so couldn’t even speak!!!

Anyway, when we finally got around that she said that there was no message on the system from the ED, and so of course my GP hadn’t tried to speed up my wait for the neurologist…*sigh* ffs, come on 😡

She totally didn’t believe what we were telling her about the ED saying they’d sent a letter, despite my partner saying “I’ve literally got the letter right in front of me!” She kept asking for the date, what it was for, who it was from etc *rolls eyes*

Finally she said we could have a telephone appt with my bloody awful GP tomorrow, ugh…my partner can do all the talking for that, I want nothing to do with her 😥

Also I had my longest seizure ever recorded today, in the midst of a cluster.

0

Epilepsy Awareness Mouth

Epilepsy is hugely misunderstood, underfunded, and can easily go missed or untreated for many years.

When most people hear ‘epilepsy’ they think of convulsive (tonic clonic) seizures. This is actually just ONE TYPE of seizure, and there are around 40! Tonic clonic seizures are also not the most common type seizure in people with epilepsy, but they’re basically all you see/hear about in the media.

Here are some infographics on warning signs of seizures: 

There’s also a huge misconception that epilepsy is ‘just having seizures’, and other than that you’re fine…this is hugely false.

Most seizures involve a postictal phase (feeling different AFTER the seizure), and this can last minutes, hours, or days. Many people (including me) also experience auras BEFORE the seizure, which can include visual hallucinations, feeling spacey, numb, ‘dead’ or disconnected.

After long seizures (3+ minutes) or clusters of seizures (typically 8+ seizures in 25 minutes) I will be out of it for 1-2 hours, And even after that I may feel tired or have a migraine. By ‘out of it’ I mean my brain won’t be producing memories, I’ll be taking gibberish, confused, get lost even in places I know extremely well etc.

Finally there is the impact epilepsy has on your life. I have 10-30 seizures a day, and I can’t do many activities…I can’t cook without supervision, I can’t leave the house on my own, I can’t go to the toilet or shower alone, and when I have seizures in public people don’t understand as I’m not on the floor convulsing!! I’ve had people shout abuse at my partner before, as they thought I was drunk/on drugs due to the fact I couldn’t walk straight and was acting funny!!

Finally there is basically no funding for epilepsy research, no cure, and your average member of the public has no idea how to recognise seizures or respond appropriately (people with epilepsy have been arrested & beaten by the police because they were acting strange – ‘unco-operative’ – after seizures). Epilepsy kills more people than most types of cancer, yet there is no ‘war on epilepsy’…this needs to change.

2

We kinda-not-really won!

If anybody remembers my disastrous negligent A&E visit (that was NOT my fault, I DID NOT want to go!!) , we got the result of the complaint that my mum was handling through a few days ago.

Now bearing in mind PALS isn’t there to help the patient at all but is there to cover the NHS’ arse, we got a good result 🙂

I now have it on paper that medical professionals have confirmed I have seizures, that they witnessed them, AND that my seizures are nothing to do with my bipolar! Two of my biggest issues with their treatment was that a) they said I had no seizures since arriving at the hospital & no staff witnessed any seizures, and they said that was the reason they released me without treatment; and b) they told my mum that my ‘episodes’ (seizures) were most likely caused by my bipolar disorder.

So whilst they didn’t take any notice of our complaint, I at least have medical evidence of seizures now, and they changed what they were saying in my favour 😂

I also got this in regards to the awful Dr that discharged me (the bit above point 11):

Kinda missing the point there – my issue wasnt AT ALL that he asked about PIP. It was that he then said in a derogatory fashion that I was ‘too young’ to be on PIP and should be ‘getting out in the world’. I made that extremely clear and you just decided not listen!

Everything to do with the NHS is gross….

1

A tough day

Stress and seizure rage today 😩

Phoned PIP today to tell them about my seizures (we were waiting until a medical professional had acknowledged they were seizures, but that’s obviously going to take too long)…figured if they won’t acknowledge them as seizures because I’m not diagnosed, they’ll at least see how damaging they are to my quality of life. I was already only one point off the enhanced rate of PIP, so I guess with seizures they’ll have to qualify me.

My partner also called a company about a disabled bus pass. It seems I’ll qualify new, but the easiest way is to wait for PIP’s reassessment, and then use that as evidence. Bloody hell.

Anyway. I got some nice photos (of me and a burnt down house) once everything had stopped being so screwed by seizures.

Sad confused seizey me trying to take a video

Collected re-grouped me, that’s better!

I went off in a rage for an hour. Don’t remember much, cut my finger somehow, then phoned my partner and we talked, eventually meeting up. I hate how abusive I am around seizures with seizure rage, I fucking hate myself for it 😫

Took some nice photography when we were back together though.

1

Seizure clusters

Seizure clusters are where my seizures happen in quick succession, often without me fully returning to ‘normal’ between them, although sometimes I do.

I average one cluster every 1-2 days, although on days where I’m weaker (eg days where I do too much, am physically unwell etc) I often have several clusters throughout the day.

Seizures in clusters affect me more than just one off seizures, even if they’re small. However I usually have BIG seizures in clusters, especially the longer they go on – in terms of type and length of seizure. 

My last cluster was 24 minutes long with 8 seizures.

It involved seizures where I flopped over (like all my muscles turned to jelly, if I was standing I’d have crumpled to the floor), I fidget and grabbed things, I drooled during them, and after/between them I was very out of it and was talking nonsense. An example, I said that our pumpkin was the only one grown by the farmer and he didn’t mean to sell it – I cried over this!!! Can you imagine having to keep a straight face through this shit?! My poor boyfriend, I’m glad I don’t remember any of it 😂

After clusters my brain is mush. I feel extremely tired, often have a bad headache, and usually need a nap. My memory is affected after a seizure for anywhere between 30 & 90 minutes.