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strider1984

Where you warned of the mental impact post diagnosis?

From March this year i suffered two minor seizures which later I was diagnosed with a form of epilepsy. Neurologists are still trying to diagnose what form it is still and i'm now at the end of May. I have not had any seizures since and I am now taking daily medication to control it so that it doesn't happen again. On tuesday 27th May I was given an MRI scan which lasted 30 minutes and felt like being on acid at an amsterdam techno party. Jesus wearing ear plugs inside a machine like that at first is a bit intimidating but by the last ten minutes you start getting into and toes tap, heads nods then a voice from the nurse shouts " stay still" and then followed up 5 minutes later "please stay still" this delaying the process!! however the good news from this type of scan is that i don't have any brain tumours, cancer, signs of a stroke and any other nasty conditions, so for now it looks like a small dose of epilepsy. The bad news is im still restricted to what i can do, banned from driving until i see a specialist at the end of August. So im restricted to working hours, must sleep minimum 8 hours a day, take pills every day, don't drink alcohol but if i do have a limit, eat healthy, exercise within reason(no skydiving or adrenaline pumping), i cant bath must shower and must not get stressed and avoid situations where i can get angry or get emotional. HELLLOOO doctor but im scottish!!!! for fuck sake avoiding allot these things is an every day struggle BUT im trying my best. Im doing not bad with the disciplines set but i was not prepared for the mental impact which by the way the NHS don't warn you about and GPs don't give a toss about. Im writing this for myself and hopefully if anyone ever reads this who is recently diagnosed with epilepsy then maybe i can help you. I warn you ill be honest and truthful and descriptive as i don't want anyone to experience what i have went through and im someone with a LOW dose of epilepsy so i can only imagine how much worse it can be  and the drugs will probably be stronger. 

Firstly ill tell you my experience and how i have coped with things.

So from going to the hospital alone to get diagnosed i realised this was a major error and should have taken someone i trusted or a strong family member. i did neither! BIG MISTAKE. when someone tells you news that your freedom and life is going to change dramatically do not deal with this on your own. I should have asked for help but being scottish and a man i decided to deal with this myself which incurred walking out of hospital in dismay and walking around glasgow city centre in my own world listening to radiohead!!!! for half an hour at least it may have been longer but i didn't snap out the trance and shock i was in until a stranger in a subway sandwich shop asked if i was ok! Thats when i snapped out of it. snapping out of it had its plus points as in front of me was a 12 inch subway BLT sandwich, a cookie and large diet coke which i shovelled down my throat as i hadn't ate in 24 hours as was living in fear worrying about this hospital visit. I then decided to phone my mother and tell her the news and made a decision to deal with it as best as i could. i told her i don't want her sympathy, worrying and i told her ill deal with this and it wont stop me. I then received a call from a lovely girl i had been dating and spoke to her in depth about how i felt and how i would deal with this. the next 3 days i had her keep me busy and i was totally distracted and focused on her and was busy dealing with my work and explaining to allot of people how i would deal it.

The weekend passed and monday came and i was fine, my work were great and said until i was back driving i could work from home and provide a driver when required. So i started working and had a few things planned as im in the process of selling my house so had mortgage meetings planned and meeting with a private buyer who wants my house so was busy plus a doctor appointment for my medication. So i started the medication monday afternoon and instantly felt different. Now different is the only word i have for this before feeling tired and fell asleep. I then got a sore head and went for a walk to clear my head as felt warm. I cam home ate and slept and then tuesday came. I decided to maybe take the pill in the morning as advised so i did, this time i went through my normal day no affects up to lunch time, had a meeting in the afternoon with a mortgage advisor when i started feeling different, a little forgetful and was tired. I went home has something to eat and for the life of me i felt stoned!!! a little light headed and decided for some reason that a 2 hour trek would help. WRONG!!!! i came home shattered and went to sleep where i has a few hallucinations and never slept well at all. Wednesday was blurry but i got up took pills, and then slept through the day but all of a sudden i felt the following majorly: Anxiety, depression, hunger, sadness, sick, sickly and that a black hole was sucking me in. all i could think about was how am i gonna do this alone, how do i survive, im going to lose my job, im going to be single all my life and felt like everything was falling apart. It was falling apart in my mind but what happened next was crazy. I drank half a bottle of gin and sat on the kitchen floor crying, i felt like shit!!! i made phone calls to people and asked for help, i told them my world was falling apart and the last thing i remember was falling in the floor spilling a full bottle of bear before downing a pint of water and going to bed. I don't really remember this but these are flashbacks. i now know that this was the day that it all sunk in! for the next 6 days things went from no problems to major anxiety and depression i have never felt so alone. then other days i felt on top of the world and that i would fight my way back. i call this phase the up and down  phase. I wont lie i went on a drinking bender 2 of those days and spoke allot to close friends, got emotional but i feel i needed it as when im sober im strong and hide my feelings and pain but when i drink i feel free to tell my problems which i did not bad secured myself around people who look after me and let rip. By sunday night i felt better. the following 5 days after this phase i was great then on the friday night i was in the house alone and things i was doing weren't going my way as i was painting. i had been great all day did a good shift at work, went a 8 mile bike ride then painting to keep me off the booze!!! a bit of frustration and the fact all my mates were at a festival in glasgow i think i cracked. to cut a long story short but a bottle of red wine which watching the festival on tv, followed by half a bottle of gin some bad news was given to me about my family and i exploded and wanted tog et wrecked!! again another huge mistake. next thing i knew i was in a pub sinking shots and pints and then again i find myself on the he kitchen floor staring at a broken glass on the phone to someone i barely know telling all my problems to!!! MENTAL i know but allot of the drinking i don't remember however i do remember this person telling me to get a grip stop being an arse and beating myself up and go to bed. I woke up the next day feeling ok and got up early and went about my day, i spent that night and the next day contemplating things about my life, why im so bad at relationships, why cant i meet a nice girl who likes me, is there something wrong with me and why do i use alcohol to solve and escape problems. I beat myself up too much, worry to much, too intense, high maintenance, scared to be alone all my life, hate my job, hate this country for the weather and alcoholism and then i had breaking moment. I realised i think too much, worry to much but plan and think too far ahead in life thats why the questions i ask myself and cant answer is cause i want a quick solution and answer. This goes deeper than being diagnosed with epilepsy and think for the past 6 years i have had these problems but the epilepsy diagnosis brought everything to a head. I have now been on the straight and narrow and have only one goal and that is "to deal with one day at a time and don't plan far ahead, deal with now not tomorrow. THis motto, phase or whatever you want to call it something i need to stand by and ive even decided to live my life like this until things are back on track. im actually getting it tattooed on my arm this weekend just so that i look at my arm it will remind me to do this and not go back to my old ways. 

I spoke to a cousin about things that i have mentioned and everything that has gone on and she reassured me that i have to do this, not plan ahead, calm down, be less selfish, try not rush things and don't use alcohol to deal with problems. I then saw a nurse on tuesday about all this and spilled my guts to her. She was great and this was a nurse from a private hospital who for the first time spoke to me offered me advice and told me to man up and do what i say im gonna do. She didn't have to this in fact she actually didn't even have to speak or tell me anything but the look of worry and fear must have brought her to help me. she was actually disgusted when i told her that i was offered no mental help, support or anything apart from pills by the NHS. So i began researching for help and found nothing really.

I then found epilepsy connection glasgow which run exhibitions offer support and they sound like they can help. So im going to get them to help me and get more information as deep down i feel i know nothing about this illness all i have done is worry that im gonna have something serious wrong with me and i didn't even get a leaflet or something to help just told what pills ill get, what scans ill maybe get and shipped out the door like an old dog. Now looking back after weeks of beating myself up that there was no support offered as i think people don't realise that this illness makes you lose your freedom, plays with your mind and involves drugs that work the mind and hard to get control over. I dealt with things bad and don't wish it on anyone. I do feel lucky for having such a low form of epilepsy but i do worry for people who are not as lucky as me. In fact it scares me a little as they may lose more than there freedom and need care, are they being offered help and support? I don't know these answers but im gonna do my best to help as the more i research in the UK this illness isn't"serious" i feel but it actually is! I had a seizure on my own and woke up with a black eye and a sore jaw as i collapsed on a set of drawers, if i fell one inch more i could have taken my eye out or could have been allot worse!!!! I have never felt that low in all my life the last few weeks and wouldn't wish what went on, how i felt, what i did on anyone so im gonna do something about it.

So anyone who is reading this please get help, talk to someone don't make the mad mistakes i made and look after yourself. From this experience i think mental health and coping issues after diagnosis are very crucial to how people go forward and i aim to raise awareness and ask questions to the process and post diagnosis these specialists give people as i think more is needed.