Help Linzie Live Again

If bad luck comes in threes, and cats have nine lives, I don’t know which animal I am in the times tables. I believe my luck comes from the love and the strength of my family and friends. However sometimes you can be surrounded by the greatest people in the world, but their love is just not enough to save you. I can’t even remember when my health started to really deteriorate. There was always something wrong, and I tended to ignore it because that’s the way that I often deal with things. But one day I found myself in hospital being diagnosed with epilepsy, being told all of the things that I would no longer be able to do and that I was at risk of dying, but on the plus side I now got a free bus pass! Fantastic, what a great consolation prize... Regardless, I refused to let this diagnosis define me and so around a week later I had started medication and was boarding a plane to go travelling with a friend around Africa for the summer. After all, feeling unwell in the middle of the Serenghetti sounded far more appealing than sitting on the sofa back at home feeling sorry for myself. I have tried to not let it stand in my way, but it has. Progressively over the years my health has deteriorated until I was spending more time in hospital than at home, literally fighting for my life as my neurological symptoms got worse and I developed other problems too. Eventually I was diagnosed with a rare connective tissue disorder called Ehlers-danlos syndrome, which affects every part of your body inside and out to varying degrees. Whilst it was a relief to have a diagnosis, sadly this condition is progressive and currently there is no known cure. They are still searching for the cause of my complex neurological problems. I am now in a wheelchair, which I have been permanently in for over 18 months. There were times before this where my mobility would decline and I would need some form of aid so I initially assumed I would soon be back walking again, but I have been told my joints are very damaged and I need to concentrate on maintaining them now and preventing further damage. Whilst I love my chair because it means I can get around, it doesn’t really meet my needs. Propelling myself is exhausting, and causes further pain and dislocations to my already weakened shoulders and wrists. I cannot have a powerchair because of my epilepsy, but the wheelchair services have recommended I get power wheels that do a lot of the work for me. Not only will they help with my pain and fatigue, but I feel like the E-wheels would give me my freedom, and also my life back. They would let me to do the things that I used to enjoy doing and enable me to be more independent again, without worrying that I would get too tired or get stranded somewhere because I didn’t even have the strength to get on to the bus. They’d help me be able to see my friends more and be less socially isolated, and I could see my nephew who lives outside of London. The help of E-wheels would mean I wouldn’t have to rely on someone else being able to take me as I would be able to get to my sisters from the station alone. I feel I am missing such an important part of him growing up and am desperate to see him more. Unfortunately my epilepsy is still so uncontrolled, and I feel extremely vulnerable and scared. I have recently been told that I am at a high risk of SUDEP (Sudden Unexpected Death In Epilepsy) and last year had a cardiorespiratory arrest after a seizure. So far 2019 has brought me several Emergency trips to hospital because I was having such bad seizures I stopped breathing and the doctors had to take over for me, yet despite this my oxygen saturation levels fell dangerously low to 60% when they should be as close to 100% as possible. My epilepsy nurse has recommended a specialist epilepsy alarm that can recognise when I am having seizures and can get help to me quickly which could very well save my life, but it is expensive and the NHS won’t commission it. I am terrified that I will not win my fight with epilepsy, and every day I am scared that it might be my last. I have genuinely written letters to my loved ones just in case tomorrow never comes. So I know I am asking for a lot of money, but unfortunately someone can put a price on my life. I am applying for funding support from a charity to hopefully help with part of the mobility side, but I truly would appreciate anything at all that you could possibly donate as truly anything will help. Even just sharing my page would be wonderful. Please help put the biggest smile not just on my face, but on all those who support me through this too. Lots of love, Linzie x