"But I can speak?"

...I remember being in hospital (the stroke ward) where you get the whole; 'once over'..
*yep okay we have a patient here, nil by mouth.. speech and language, occupational therapy, physiotherapist*.. and then
You get my most favourite person; healthcare assistant
'Here to suit your dietary needs and give you a healthy eating plan!' ..
Hmm okay, I've definitely never stuck to a 'healthy eating plan'

This blog post seems off topic(for now)
BUT..
And I will bore you, today (September 7th 2017) I started Speech and Language Therapy again..

My speech and language therapist, did tell me I could 'contact her whenever I need' and I guess you NEED to take advantage of the NHS :)

She's lovely! I actually think I get on 'too well' with all these 'healthcare professionals', one even told me their hairdresser was blatantly talking about me...
"You literally can't even tell she's had a stroke!"
...To the point where she had to tell the lady to stop talking, because I'm her patient..

 I waited in the waiting room (For a ridiculous amount of time) and then wandered through these double doors labelled 'SPEECH AND LANGUAGE THERAPY' the bold white typography over the top of a tight blue (standard NHS) plaque, JUST so everyone can watch where you're walking too (as if the elders don't stare enough) ..

The Room:

You sit in a small room surrounded by leaflets and flyers all promoting their services, which might I add are really good!

Then comes a huge A4 folder, BANG slammed on the small IKEA wood affect table, this contains sheets and books of 'quizzes' to test your brain and 'thinking time' ..
it's a normal procedure after a stroke just like the eye tests where they ask you numerous questions about "now, what number is this.."
"And can you point out all of the trees"

In fact; let's compare it to when you want to buy something online and you have to Answer the famous;
"Are you a robot?" Question..

It's exactly like that, but obviously with a brain injury you have to think a bit harder and in depth, because yes I do get confused still..

Brain injury;
I rush every scenario in my head "should I go and tell them I'm early?!" "Do I look stupid waiting here?" "Is the baby crawling towards my bag seriously gonna rummage through and possibly touch something it shouldn't, that'd be my fault.."
I don't think smiling at it's helping the situation....

The catch up phase;

It's been a while since I saw my 'therapist' so we had to have a 'catch up' I used to always drink her jug of water, every time I went.. (it helps your brain work) but also annoys my therapist because she's constantly up and down refilling the jug...

Learning;
So far I'm coping with the 'faults from my stroke' so I've started actually calling things by name instead of randomly adding in words.
I talk slower (still too much) but slower..
I'm more confident, in myself and the way I present myself, according to her "I don't seem as self-conscious as when she first met me"
I also am going into my final year of university!! (If I hadn't already said) therefor my writing skills are improving and I'm actually passing things.

Brain injury;
After a stroke you're always going to have one (don't beat yourself up about it, embrace it) no matter how stupid you look wandering in a circle talking to yourself, it's just a task of 'rewiring' and re connecting' my little disconnected strands inside my skull, 'elasticity' ..
My therapist explained that the 'people I meet on these Facebook forums mainly; epilepsy and stroke will ALL have a brain injury,

Example:
I recently got called a 'victim' because I shared this blog on a 'stroke survivors page'
don't ever call me a victim again.

*I shared my 'story' in your group because you asked me too...*


I have now left EVERY 'stroke forum' and refuse to join any more, because I have only been criticised; by the name of this blog, my 'story' and I don't ever want to be called a victim again.

My speech and Language Therapist explained "You need to stop assuming you're the one in the wrong because you're not,  just leave the groups.. some people are still really angry about the fact they've suffered a stroke"

Medication life..

Who gets excited to take their tablets?!
MEEEEE

I lay the silver packets out every night to prepare for as soon as I wake up in the mornings, this helps me sleep and relax as when I get up really quickly it can cause sezuires, I mean when you're epileptic you get the anxiety of "will I have a sezuire? Do I feel alright to get up?" And so on.. probably making your brain even more confused, with all that electrical stimulation rushing around..
Who invented tablets? Some of mine are pink AND green, this is my chemotherapy, the strongest and worst medication happens to be the brightest and most prominent..
(I'd take a picture but I genuinely cannot be bothered)..

You know the dirty taste water starts to taste like when it's left over night? All misty and discoloured almost making you debate if you should put it anywhere near your lips, I can't think like this even though it's a regular occurrence in our flat :(

Like I've pointed out before the "I bet you rattle" comment that I get literally all the time..

I don't rattle..

I take;

Lamatical - 300mg
Tizanidine - 4mg
Atorvastatin - 40mg
Fluconazole - 5mg
Hydroxycarbamide - 300mg
Lansoprazole - 30mg
Eliquis - 5mg
Alendronic acid - 70mg
Ferrous sulphate - 200mg
Prednisolone - 40mg
Calcichew - two tablets a day *I looooove these so much!!*

(These tablets are all taken daily..)

Oh and if I'm having a really bad; week or day I get to spray this mouth cleaner called (difflam) into my mouth.. this stops any infections from happening when I bite through my tongue/mouth after a sezuire..
Luckily it tastes nice :) .... *the spray not the biting*

These tablets keep me alive and probably mentally stable, sometimes I get really concerned when I'm so alert I look like that really shocked emoji with its eyes wide open, (usually after a two hour nap).

In our flat me & Liam have about 3 cupboards full of tablets,
This takes up more room than food..

Tablets are a huge juggle I mean,
How do you know you're taking the RIGHT ones?

Recently my sezuires have been ridiculously bad (we're talking about 3 a week) and this is because my kidneys have started releasing protein; nephrotic syndrome - another illness I live with
And my doctors only ever known to put me on steroids (prednisolone) unknown to the fact these actually interfere with 'AEDS - anti epileptic drugs'..


"My nan just takes them all at once!"
*Yeah well I don't..*

This is something that REALLY gets on my nerves.. swallowing tablets is so difficult, I mean Liam does this weird thing where he genuinely forces his fingers down his threat before swallowing tablets  (even the sugar coated ibuprofen)..


I wanted to add a blog post into my medication and what I actually take as I don't think I've written about my medication since 2014, when it was the typical stomach injections to thin my blood (which you get in hospital)..

Pilgrims Hospice...

For those who aren't aware I'm currently helping out at Pilgrims Hospice;
reception, water duties, tea & coffee duties and believe it or not (I've emptied an ash tray for an older lady)...

This blog is separated into different sections, all of which explain (hopefully in detail) my days at the Hospice and what it's like to work with a disability, because
YES you can work with a disability!!
Brain injury, epilepsy, blood conditions or just like a lady I'm shadowing at the moment (false legs)

''Oh did I hurt you?''
I work alongside some lovely ladies (all older of course) whom mainly moan about the fact they've retired and are turning 67, (can't compete)
You have to explain the fact that there are some things you aren't able to do, I mean it would be hard with one arm/hand (lets be honest)
My seizures are so random, I mean my left arm swings out and hits people.. without warning, I just kind of grab it & apologise as it's embarrassing. This lady I was shadowing was almost a 'victim' of the arm swing, I mean after explaining I can't physically move it, it's quite a shock when it swings out and hit you (I've had people move away from me because of it)..
 I'm happy cause it's moving!!..
 When the arm swung out she thought she'd hurt me, just like Liam said
''I was scared to touch you the first time I met you as I didn't want to hurt you'' (it's fine, I can't feel it)

Connections
I have friends at university but to get out of the house and socialise is so nice! I feel 'normal' You get that BUZZ to just get up and go in.. which I used to get at work but, that soon changed..


Hugs & sympathy 
''ooo I'll see you next week i'll come say hi!!''
They are all so lovely but this one woman actually hugged me (no one ever does) therefor I kind of stood there and froze as I'm not used to it (brain overload - brain injury kicking in)..
When it's my mum or Liam I'll swing my left arm round them and grip them really tight, this was a complete stranger...
Feels good to be loved by someone else.


The Till 
Okay so I failed maths - U.. because I bunked all the time and literally never grasped it, I sit right by the till at the Hospice (people buy t-shirts, wrist bands and so on..) I was asked to count the money..
*yep, great.. kinda need to explain I'm really bad at maths*...
they just giggled, which was nice because in Fenwicks, Monsoon & Next you had to have like 'extra training' JUST to work the till's..
*in other words, you were given a handbook that I basically threw away & never read* :)


''You refill their water & give them a fresh beaker''
I never knew I'd be doing this sort of thing and it's so fun, I'm on my feet 24/7 and it's gaining my confidence with my disability, just like meeting new people and being able to start conversations..
We go round with a really dodgy trolley (thats broken) and refill the patients (water jugs, beakers and replace cups and glasses)..The things people expect nurses to do in hospitals.
Were NOT allowed to go into rooms that are 'engaged' or anywhere with curtains closed, as it's obviously private & they are busy.


''Hello, what sticker would you like?'' 
I've always been a bit strange and OCD, they have; red, blue, yellow and green stickers on the desk, visitors have to wear one when they sign in.. I've been asked what colour people want,  as I thought it was polite (apparently it's annoying)..
We have the duty of making sure people have signed in and the lady I shadow actually shows them where to go (she's well cute) I call her the hugging lady..
They had new stickers today :( not coloured ones BUT you have to write the date on them..

ROSE COTTAGE  
For those who watched CBB this year will know that the bedroom was called 'rose cottage' I mean, obviously its very different to CBB...
A place I'll probably never visit but a place I know people go to mourn and grieve over a 'lost one'.. were NOT allowed to say 'dead body, passed away' or anything like that..

Today (Tuesday 5th September 2017) I witnessed the first rose cottage 'visit'
Us at reception get a list of patients and it lists 'deaths' impatiens' and so on, at the bottom of the sheet but you never realise how much you genuinely have to do,
The doors shut, everyone goes silent and you just see people look down as the beds wheeled round (nurses) I mean, when doing the morning water, tea and coffee round you kind of know who's very ill and some people aren't aware of the surroundings.



''Thank you so much and goodbye''
A man who was visiting a relative (must of only been in there 5 minutes) came straight back out again, as the person they visited had been wheeled to rose cottage. Us at reception aren't allowed to say 'sorry for your loss' or anything like that, as it's seen as rude..
You just kind of react to the slight smile the visitors giving, hiding away their tears and grief..
ready to release it all as they leave. ( I presume).


''You learn to adapt!''
When I meet friends with babies they always kind of avoid handing me their child because of my arm, Today I met a lady who has false legs and no fingers and two children, we compared how we do certain things,
''Oh my god, do you do your bra up before you put it on?!''
''I usually go one step at a time downstairs''..


My final point this this post is that, no matter what, you can always achieve anything and you should never give up. Just try and try again.

Keep smiling & keep your head held high.
I've learnt that people who judge you wouldn't cope (thats too you, my neuropsychologist whom I will always sl*g off)

:)

"is she drunk?!"

Can I just say ONE thing to anyone who's witnessing a person having a seizure..
Staring at them and asking if their drunk is really rude and insulting..

Yesterday ( September 2nd) at 7pm I had a 'mini seizure' that was controlled and I was 'helped' out of by Liam & his friends (thank you)...

It was at a racing track on some chairs, this was at a place I'd never been before, therefore after a stressful week of seizures anyway I was stressed and anxious about going.. (when you have epilepsy anxiety is a huge thing)...

I guess you could say I 'awoke' to a really ignorant and no offence very  overweight lady and her husband, staring at me as if I was some kind of alien...
"IS SHE DRUNK?" 
"WHATS WRONG WITH HER?"
Yes I am recovering from my brain over reacting and possibly failing slowly, therefore I do NOT need some random assuming I'm possessed or treating me like a 'disease'..

I mean, I refuse to watch 'the exorcism of Emily Rose' as I do get reminded of my seizures & how I assume they look..

They aren't nice, but there is nothing I can physically do to; stop or treat them other than take my medication regularly (which I do)..

Not a nice image but something I feel needed to be included..

( The Exorcism of Emily Rose -2005)

Something I also have experienced is at university a learning support assistant actually telling me they'd ''poke someone having a seizure because they wouldn't know what to do''

I think I've explained in my blog posts before and recently that when you're around people in general regardless of if you know them, and you suffer with epilepsy (any type) you get severe anxiety about if they would 'look after you' or check you were 'safe'..

So far since my 'relapse of Nephrotic Syndrome' I have had One glass of Malibu and coke as I don't want my seizures to carry on.. 

I am Still smiling and still 'keeping calm'

Yesterday before the visit to the 'racing track' 

Another quote I find positive & is very true..

I aim to raise awareness in living with  epilepsy as well as my other health conditions as I feel it's a serious 'illness' that clearly people clearly need more knowledge about :) 

And to the lady at the tracks yesterday I was not drunk, I am not possessed and your 'comments' will haunt me forever as you are a rude and ignorant stranger..

fatigue IS a disability..

I go on about fatigue a lot but it's mainly because it's something I 'suffer' with every minute of everyday;

You get tired (I mean I assume) when you're in the sun, walking and doing anything strenuous..

Fatigue is - extreme tiredness resulting from mental or physical illness

My brain just like any other stroke survivor is processing everything! I mean, I still have to tell myself when to move my leg..

"Right, you're lifting this wrong.."
*stupid brain*

Fatigue makes everything seem harder, I think it's worst when you have to actually plan your day trips out..

I've already assumed I can't go out for a day this week because I'll be exhausted, and that's just from having a flu jab the day before..

Tiredness causes my sezuires and we all know that's horrendous..

Fatigue affects so many people and YES it is a disability.

"You're always tired"
*yeah yeah.. my brain is currently re-wiring itself to be saine for you*

"Make sure you're not tired and you have a nap"
Napping doesn't really help.. you get even more tired, I mean you have to process; when to wake up, how to act after you've woken up and also if you dream..

I'm not entirely sure if this has explained fatigue but it's the best way to kind of describe it..

It's a mental and physical disability, if not 'illness'

And I will continue to live with it for the rest of my life..

So don't comment on if 'I'm tired'
After all..

*im recovering*

Am I not allowed a disability?..

Swearing is in this blog.. just to warn you



some people can be so quick to judge..

"But you're so pretty!"
"Oh my god, you were so young how did it happen?!"
"You can't even tell, you look absolutely fine!"

Literally the worst comments even if they're nice..

I still use a lift when I'm in shops because otherwise I get extra tired and can't shop *worst thing!!*..

Let's just give you all an example;

"You shouldn't be sitting here, it's for the elderly or people with a disability.."
A comment made by some old lady who seemed to think judging me was acceptable..

*just piss off will you, wait till I explain what's happened, that'll shut you up*

So I did.. because she wouldn't stop staring and trying to make me look stupid..
I've been threatened to be beaten up before because I tripped up while getting on a bus and accidentally hit someone with my bag

"i'm really sorry I have a disability my balance isn't great"

I own a disabled persons bus pass because I am classed as disabled, the bus drivers look at the way I walk on the bus and almost double check?

"Urgh some people are just lazy!"
A comment made by a lady pushing her son in a wheelchair whilst in a lift..

*lets just let my arm hang out a bit she'll understand, you can tell when I 'let it go' and people do stare at the way I walk/the outline of my splint which I try to hide..

"Please can I sit down I'm really tired.."
'Of course, are you okay?'
*hmmmmm...*

When I was in a wheelchair people just knew? They just 'accept and class' you as disabled.. because well, you're in a chair?

It's a hard life, I mean juggling the disabilities I 'own' and the criticisms by mainly older people, can I just say ONE thing..

It's made me stop and think before I judge someone and you too should do the same..

I mean,
How would you like it?

I'd always move for a wheelchair user or elderly person on the bus, I'm not a rude person..

Living with Essential Thrombocythemia

I have this little yellow book that states I'm an anticoagulant patient, it states my name, age address and illnesses including a 'range' that my blood should be..

I'm so grateful for being diagnosed with this 'illness' as it's saved my life;
I take 500mg of chemotherapy everyday along with Iron tablets that stop me 'feeling dizzy' something I'd experience ALL the time growing up..

What is it?

Essential Thrombocytosis is a rare blood cancer characterised by the overproduction of platelets by megakaryocytic in the bone marrow.

Here is a cool diagram that my tutors would 100% expect me to of 'created myself'..

The majority if not ALL my 'illnesses' are mainly for older people.. 

I produce too many platelets in my blood.. something ridiculous like 1000 and it's meant to be between 200-400?..

(basically my blood clots quicker than it should) 

I've had about 13 tubes of blood taken this week out of my poor right arm that must HATE me...

I bruise worse than anyone else, my cuts take longer to heal meaning I currently look like a heroin addict.. 

Monday - Blood 11.5 

Tuesday Blood 2.5

My new home - Canterbury Hospital Thrombosis centre (I am currently a regular & one of the youngest patients) 

bruised from more blood 

and again, blood - 1.5!! (thats good)

My blood is ridiculously thick, like I said; the blood clot travelled from my right calf through my neck to my brain and then.. BAM 

Living with essential Thrombocythemia is a struggle day in day out, just like any other illness it's the risks you have to take.. 

I have to be extremely careful when bumping into things as I'll be bruised for weeks if not months

I probably shouldn't drink any alcohol but YOLO :)

My immune system has to be monitored, meaning if you have any signs of a cold/infection bla bla.. DON'T come near me!

I get soooo tired! like obviously 'stroke fatigue' is horrendous but where my blood is struggling I'm literally always wanting my bed (this is why I get so offended by people who complain if I'm tired) 

My legs ache so much, I get really restless from standing around and just need to fidget! 

I get 'blotchy' my skin goes some weird redish colour (especially in winter)

shaving is difficult incase I get infections so let the leg hair off..

My left leg is probably lacking blood flow but this is a picture of my illness side affect..

I live with this everyday & I am always at high risk of more strokes but it's something that I am so happy to of been 'discovered' as without the diagnosis I wouldn't be sitting here today writing this :)...

So heres to the new blood thinner I've been put on and thank you to every pathologist who has struggled to find my veins..