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Frustrations an feeling like things are not going to get any better
Debzeb
Member Posts: 9 Connected
hi, my first post on here , I hate the word disabled is that bad? My basic story is this, I had epilepsy from about 4/5 years old I got on with life I had good friends and still do ! I hit my 20th birthday I’d moved home after training to become a florist after school opened up a flower shop very successfully , then one night had several fits that just wouldn’t stop, I was rushed to hospital a hospital that I was never under they found my brain tumour and put my family into turmoil , I had to move back to my dads to have radical radiotherapy it was a ghastly journey as the say ! My left side was affected by the biopsy I had done , had a brain haemarrage it affected my left side I have a trem in my left arm and leg , I can control if I’m not stressed .i was told it was a grade 4 glioma and I wasn’t going to last a month , back then I can still remember at the top of my notes it was written in red terminal, Well I had radio first split the tumour the size of a orange! Then a couple weeks later next Mri it joined altogether again ,so onto chemo it was. I put on so much weight because the steroids affect you , I was told your going to have a 12week course chemo , I’d always been fat not mincing my words but I ballooned to 24 stone they call the affect on you moon face ,I was more like a chubby hamster .but I started chemo only could take 8 weeks of it I’d gone to being massive to 9 stone full blood transfusions an platelets my Family wasn’t offered any support no McMillan nurse nothing we jumbled along , I took all they gave me , then one day I was called into my oncologist , there was a lot of drs in the department ones I’d seen over the months to be told my tumour had disappeared , I will never forget that day and the struggles but twenty years in I’m still in remission, but I haven’t been lucky in 2007 i was struck down with meningitis I was paralysed down one side for weeks in hospital for a long time I worked hard worked hard with physio and learnt to walk again not perfect but back to my clumsy clod self , family was key for me and friends . But 7 years on I got meningitis again it was like ground hog day but worse I’d been clear of fits for more than five years ( controlled) these fits were some of my worse ones I was awake while it happened my sister had to email the head of the hospital no one was doing any thing ! I told the drs to put me in a induced coma the fits were so harsh face contortion I’d never had finally they started antibiotics through the night they found a water infection combind wa ear infection ( which I’d been to the drs about two weeks before!!) let down is how I felt , I had just took my first steps working with the occupational therapy and physio team an I was struck down with pneumonia, set me back so much , I managed to fight that an got to my feet sort of the hospital got me a place in a rehabilitation centre near where my flat is and not far from family too ,three weeks in there I got to my feet with a Zimmer frame I couldn’t believe I was going through it again but I am still working hard to improve things I have had to give in and buy a mobility walker thing , never thought I’d be like this I used to whizz about on the bus where one bus trip completely I get worn out over the past two years I’ve had several falls my left leg jus has a malfuntion, but as my mum always drummed itminto me there is always someone worse off! I know there is but I don’t find that too comforting but I know I’ve nearly died three times and am grateful to be alive I’ve been lucky so my mum tells me but my depression and angst doesn’t help and migraines fro my tumour I have been in a bad place considered suicide, but ....could never do that to my family everything just seems a big mess my mum is in hospital she’s just had triple bypass , so yet another up heavel just feel so down . But I know I’m luck I do !. I tried to cross the road earlier an no one stopped to let me cross ! I will carry on with my recumbent bike an fingers crossed it helps 😊
Replies
You really are a wonderful strong person. I totally understand your feeling of limitless, I too struggle with this and on odd times think why me. I then think of a very very dear friend of mine who departed this earth 25 years ago in her late 20s leaving two young sons and her husband. I then think come on you’re still here, so fight for your place on this earth.
Thank you so much again for sharing, chin up ! 😀😀😀
I wish I could give you a big hug! Thank you on behalf of the community for sharing this with us. I admire your determination.
Early this hear I was struck down with bilateral pneumonia which nearly killed me and Transverse Myelitis which meant my spinal cord became inflamed. Very long story short, I’m currently in a specialist neurological rehabilitation centre learning to walk again. I am now able to wlk with a Zimmer frame as long as I have 2 people beside me. My motivation has been my wedding next year. I will be walking down the aisle!
Glad and to have met you!
Disability Gamechanger - 2019
Disability Gamechanger - 2019
Some people are amazing x
Ive watched DIY SOS, it’s brilliant, none deserves help in their daily life mor than the young man you’ve mentioned. Your friend Peggy most certainly should be proud.
Im sure this young man will do more wonderful, he as many strong people surrounding him. Also people like yourself helping his gran to help him,you just being there for his gran to pour out her devastation to you will help him.
Life gives us many twist and turns, I like you,I never thought I’d be as I am, but I am,so I’ve got to get on with it. I fight everyday, as I’m very sure so do you. But it’s hard, but I’m lucky I’ve go a brilliant family around. Please tell the young mans gran that she a lucky woman, I’m certain she knows that already. Thanks for sharing with me.😀😀😀
Hi Ami2301, I've not yet had a chat with you and I'm sorry it's taken so long, from what I have seen you are not only a very warm and welcoming person but you also like to have a Gas, very much like myself. I am so sorry to hear of your conditions and I do not only hope they improve, I know they will and that you will walk down that Isle. I also hope that you and your future husband to be have as many wonderful years together as I had with my late wife. We had what I can only say was the perfect marriage we were together for 25 years, 25 years of wedded bliss. I know that you are not going to believe what I'm going to say next but I can assure you from my heart it is the truth. In the 25 years we were married we never had a falling out or argument, yes we had heated discussions which were usually over money or the lack of it, but we never had a proper door slamming plate smashing barney, never. We made the agreement that we would never go to bed on an argument or not speaking to one another and we never did, you would not like to think, may this never happen that the last words you spoke were in anger, so if there is one single piece of married advice I can give it is that you never go to bed on an argument and make sure you always kiss and say goodnight to each other. if you follow this piece of advice I feel you will have a good life and at least 25 years of love like I had, and even though I have lost my wife I still have the love for her and that will never go. So from a good old-fashioned lover boy as Queen would say I wish you both a happy future together long life and love to you both. all the best from Gordy & Tilly (my wee Jack Rusell)
Disability Gamechanger - 2019
My brother used to be in the metropolitan police too, many years ago and yes they are very supportive. He’s still in contact with a number of them now.
I do wonder why my life’s changed, I mean through illness and my disabilities. I do believe it makes you stronger, probably because you have to. I like you lost my dad, 2 years ago, he too had vascular dementia like my mam. It’s a cruel illness and very hard to see them both suffer. My dad was 82 and my mams 84 now, but deteriorating. With vascular dementia we don’t know how long we’ve got our mam for. It’s a blessing my mam doesn’t know, she was a very proud woman and would have hated the thought she would have had dementia. My parents used to have residential homes and a number of the residents had dementia, my mam was wonderful with them. She would always say that she’d rather lose the use of her legs ( which she had many problems with over the years) than lose her mind ( again another one of her sayings) and sadly she’s got dementia. There is a bright side, she’s so funny at times I can’t stop laughing. The reason for this is that what she says is funny and also mostly because my mam wasn’t a very humorous person and she’ll look at me as if I’ve grown another head hahaha.
Its really lovely having this chat with you. 😀😀😀
We’ve been married for 35 fabulous years, yes we’ve had disagreements like you,when our children were little money or like you lack of money too created a few problems but we managed. I worked nights and he worked days. Mmmm maybe that’s why there weren’t many rows hahaha never had enough time or to tired!
Thank so much for giving us a peak into your life. Great to meet you.😀😀😀😀