Lydia’s Story – 1 Year On…

“I wanted to update you as survivor stories are the only thing that has got me through the last year , reading them and being inspired to keep going helps me out. So as I approach a my 1st year stroke birthday next month I wanted to share again .

As I approach November the 27th I feel sadness and happiness in the same second …. it’s the day our lives changed forever , I woke that day like any other enjoyed Sunday lunch at the pub and walked our dogs in the countryside around 8.30pm everything changed in a second .

I was unaware what was happening to me but will be eternally grateful my partner Phil realised pretty quick , my face drooped , my speech was slurred & incoherent and I couldn’t move my left side , I was totally paralysed . He rang an ambulance and the speed at which Hereford county hospital reacted is the reason I am not more disabled or dead . I had a large hyperdense blood clot in my middle cerebral artery , the clot was dispersed in hospital and I was admitted to the stroke ward .

Monday morning I opened my eyes and my whole world had changed , noises were loud terrifying and strange , colours were different brighter more intense and painful on the eyes . My left arm was numb and my hand refused to move no matter how hard I tried to move it . Facial expressions meant nothing to me and simple conversation was confusing and tiring. A fire alarm went off whilst in hospital and I screamed and cried like a baby, a lovely nurse cradled me in her arms- reassuring me all was ok this was a noise I’d remember eventually .

My blood clot formed in my heart not a DVT or for any reason they can find other than the cardio team found a hole in my heart . Funding for this heart surgery has been cut so I have to live knowing this could happen again but that’s a whole other story .

Medical teams put me on blood thinners , statins all which made me feel so ill but reduce the risk of a recurrent stroke something you just have to deal with , side affects can be brutal from these meds .

My life changed in a day , I didn’t recognise my children couldn’t remember which one was which , remember their births or their childhood . Things have come back over time but it’s still hazy.

Lights now hurt my head and the last 12 months have seen me go onto to have seizures , hemiplecic migraines are terrifying they cause facial paralysis and I have no warning when they are coming.

I had the Hereford community stroke team come in for 8 months but I’m deemed as plateaued in recovery aka I may stay as I am .

No one tells you about the how insanity of fatigue is life changing , being to tired to lift your arms or crying all day for no reason . Being physically unable to process thoughts or conversations . I’ve never been a crying kind of person but since the stroke my emotions are all over the place . Some days manic repetitive thoughts , fast speech and inability to sit still , other days crying on the couch all day not wanting to be here .

My stroke has taught me I’m stronger than I ever imagined because of my partners support he’s my lifeline my soulmate and the one who’s bore the brunt of this tragedy , my children are my life and they’ve also had to witness the brutality of brain injury , stuttering getting words wrong , learning how to walk again and use my left side , confusing things, the noise 2 lads bring to our home at times has been unbearable and my sons spend more time with their dad now, something I’ve just had to accept as I recover- it won’t be forever, but it’s helping me get better quickly .

Seizures were terrifying but my brains way of trying to heal itself – something to just accept as my new life now . I have changed and I’m finally beginning to be ok with that .

I’m scared of the outside world and now only feel safe with my partner around. I’m scared of noises , lights and people , I struggle to recognise facial expressions and the way I communicate has changed , I’ve gone from a chatty outgoing lady to a quiet thinker who survives via social media and quiet dog walks . I like quiet now , no noise, just peace .

Our lives have changed forever but I am alive , I am getting better every day. I need more surgery very soon and the fear of stroke will plague our lives. One day I may sadly pass away due to it and we deal with that it’s the unspoken conversation we both know is there , an mca stroke doesn’t have great prognosis long term.

Time is the biggest healer there is , for anyone who has suffered the cruel twist of fate and suffered a brain injury they will know that time is such a precious commodity , this last year has been an insane learning curve . I’ve learnt to walk again at 35 , I’ve learnt to plan my time and gather my thoughts , it’s hard going but it’s possible .

Stay strong stay positive , ride the rollercoaster of emotions you will feel on a daily basis it will get easier .
Fatigue needs management and it’s an ongoing process for us to learn how different activities affect me .

The Different Strokes group has been my lifeline , they are a charity and their Facebook page is full of stroke survivors supporting and encouraging each other on a daily basis , I’ve made friends , use these sites and groups and use social media . It stops me being lonely and it helps pass the time as I get better !!

Here’s to the next 5 years … ”