Frustrations an feeling like things are not going to get any better

Debzeb

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 ?

Gwendoline1

Dear Debzeb, Thank you so much for sharing your life’s challenges. There is also a wonderful inspiring lady on this website who’s shared her challenges too called bevt2017 I’m sure you’d be able to swap may experiences you’ve had through your journey with medical teams. 
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 ! ???

Ami2301

Hi @Debzeb welcome to the ommunity!

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!

Debzeb

My darling you will get there I’ts hard work keep at it you may not get back to the norm but you may I can walk I live alone no carers no help I’ve fallen over a good few times you’ll get there you will xx

Ami2301

I have Ataxia too which is a battle itself. I can walk better than before I became wheelchair bound last year. Thank you my lovely! It really is hard work but definitely worth the sweat and tears! If you ever need a chat, I'm always about

Debzeb

I’m 41 this Christmas and never thought I’d be in this situation even after the tumour . But I’m friends with some older people because I have played league dominoes in my team afor quite a few years - some of the oldies from that made go to a club on a weds at the British legion I’m quite independent so it is frustrating I’ve depended on taxis a lot which means I can leave my biddy walker at hom and just use my walking stick it’s been hard work but what else can you do ! I won’t give up! Any questions any I will answer I’m a open book x

Debzeb

Gwendoline one of my good friends grandsons was one of the pc’s mowed down on the bridge in London two small children 30 odd years old his an inspiration his wheelchair bound but they have had him up his fighting to walk with a amazing team around him , his just done a parachute jump for the hospital that is helping him , an innocent man at work just collecting a commendation!!! DIY sos helped him adapt his house for his needs my friend Peggy was devastated but she’s so proud of him ! 
Some people are amazing x

Gwendoline1

Oh my,he truly is an inspiration. What fantastic young man he is. At times I believe we all stop and think how lucky we really are, life’s tough at times particularly when your in pain. When you read about young people,like your friends grandson, going about their daily life and that happens to him, you take a fast gasp of air.
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.???

Debzeb

Kris is amazing, that happened after I was ill but his strength to get to walk again continues and he has a supportive family and the metropolitan police which my dad was in for 30 odd years are supporting him too , which they did when my tumour was found support from my dads friends has be key to also getting over my dads death four years ago life can be blinking rotten but you just gotta keep jumbling along! My mums just got out of intensive care before she went in for her triple heart bypass surgery I said mum you’ve beat breast cancer we’ve gone through so much together your as tough as old boots we both are ... much love gwendoline xxx

Gordonmrln

Hi Debzeb, Well my friend you have really been through it my lovely, and like the others have said you are an inspiration to those who sometimes feel hard done by, I've not yet met anyone that has suffered from as many Knockbacks that you have had to suffer from and come out the other side, still feeling very positive, you really are quite something, and I mean that in an admiring way, I suffer from Chronic pain, but I've not suffered a fraction that you have gone down and even though I'm in a wheelchair, you have still suffered far more. Like Ami2301 I to would like to give you a big hug, can I ask you and I hope this won't offend you but have you thought of writing a book about your life experiences because the story you have told so far has been uplifting and fascinating to see how you have battled on in life. If you wrote a book I'm pretty sure your story would inspire others to fight their conditions and try to better their lives, you really should think about writing your life story as you've said yourself you are very much an open book and a book we could all learn from, you have made me feel inspired and I will take this forward with me, and whenever I'm feeling down or disheartened I will pause for thought and think of you my friend, and I know that it will instantly bring me to my senses. Debzeb welcome and I am very pleased that you have chosen to become a part of our community, good luck and God bless. from Gordy and wee Tilly ( She's my Wee Jack Rusell).   

Gordonmrln

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) 

 

Ami2301

Wow @Gordonmrln thank you from the bottom of my heart, bought tears to my eyes! I am so sorry to hear that you lost your wife, it sounds like you both had an amazing marriage, which is truly lovely to hear The foundation of our relationship is laughter and love, always go to sleep with a smile on our faces and say to each other ‘I love you’ and drift off to sleep in each other’s arms. There is no need to apologise, glad to finally meet you and on such a moving post! Looking forward to chatting with you more!

Gwendoline1

Hi, Debzeb, Well you have truly been through the mill. My mam ( who sadly as vascular dementia now ) used say that you don’t know what goes on behind closed doors. It’s true nobody knows what is happening in other people’s lives. I’m sure your mam well be as right as rain in time. Rest is a good healer, again another of my dear mams sayings.
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. ???

Debzeb

Ah Gordon lovely to meet you there is more to my story To much emotional stuff to write about , my life at the moment I may have to buy a power chair for going longer distances i said to my step dad today I think I’m going to have a pot to save for it lol but I’m not giving in I’m still getting out n about  off to bingo at my local conservative club tonight been going there years I am lucky my friend who goes when I got out of rehabilitation I was visited by so many people from my town friends I felt honoured, my friend Jean rang me one day I hadn’t been able to go back to my routine an was too scared of my leg giving way , my friend Jean rang me and said right Deb it’s time you come back we’ve missed you I’m picking you up ... so I’m slowly after two years getting my routine back! Gordon I’ve been told this before about writing a book ! I said I would one day !! I am a bit of a messed up lady really lol emotionally bad choices of men early childhood trauma too an a abusive first love ! My last partner was fine but after my dad died even though I’d been in remission he said he couldn’t cope with the cancer fret - mum had breast cancer an dad died of it  so I said to him I think we’d better call it quits then mutual separation he supported me through dads funeral then we parted but life goes on hey ! I think also we was engaged an his mum pressured so much I’d had enough !! Lol  nearly all my life’s saga nearly!! Ha ha!! Flipping heck !

Debzeb

And I hope you have which you have got from here support losing your wife must have been so heartbreaking and your carrying on which is what she would of wanted lots of love x

Gwendoline1

Hiya Gordon, How lovely to read what you’ve written. A man after my own heart! You had a very special marriage, wonderful memories that no one can take from you, you can sit and swim in beautiful thoughts.
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.????

Gordonmrln

Hi Everyone, and thank you so much for your kind words and thoughts you are all truly warm genuine people, don't you think and find that people like us that have or disabilities seem to be more understanding of others and show more passion and care in how we treat and respect people, I've always said that people like those at Scope are truly genuine people who don't judge others and we all seem to know exactly how others are feeling when they tell us their very heartfelt story. The reason I said you should write a book Debzeb is it is something I've longed to do and I have started. Just before my wife passed away I was doing an Open University degree in Art and Humanities and part of the course included a year on creative writing it was such an eye-opener in more than one sense. If it wasn't for taking the course I would not have found out that I was suffering from Dyslexia, the OU got me tested as I was struggling to put my thoughts and ideas into words but when I was told why and given the software to help me life became more understandable and I started to see things more clearly. This also made me understand why I was in what they called the remedial class at school when I was in my final school years, although I left school with some CSE If I had known about my condition back then I might have been able to learn more but in a different way. However, I gave it my best even though the teachers didn't really care I wasn't going to leave school without at least one exam result, I ended up with 5 it was like me sticking two fingers up to the education system and saying I'm as good as anyone else and with that I step out into the world of employment. But I have for some time now longed to write some kind of book, I've made a start on two the first is a semi-autobiography about my life and how I fell in love and the fights and challenges I've had to face, the second is a crime thriller about a serial killer and a drinking loose cannon detective, whose techniques leave something to be desired but his results are outstanding, and he has had experience with serial killers by putting 3 behind bars for life, somehow he knows how to get in their minds, but this latest serial killer has got him stumped, and just to give you a little insight into my mixed up mind, the serial killer is wheelchair bound and out for vengeance, and with each killing he leaves a calling card which is blank except under UV light and then the light uncovers a wheel, which when the team discover the symbol it is 5 murders in before they understand what the symbol is, but as I've said these are works in progress and I keep starting and stopping with them but eventually I hope to get them finished, I have the endings for both so I have something to aim for, and along with the other interest I have which my Target shooting has taken over everything at the moment and I've just started to enter my first competitions I was in one at Elgin 2 weeks back and I finished 2nd in my group and had the best-improved score of the whole competition I was pretty chuffed if I say so myself, my coach is very pleased as some of the shooters I was up against shoot for Scotland at National level so I did myself well. I am now getting more and more eager to get better results and my shooting averages have shot up. I also didn't finish the last year of my degree with the events that took place but the OU has been very understanding and have said I up to 7 years to complete my degree and as I've now taken 4 years I've got 3 left in which to retake my final exam, I did take the final year exam but my score was not high enough for a passing grade. But I know where I need to improve so I will start again next year, I'll keep you all posted as things develop, but I've gassed on far to much now so I'm going to call it a night, plus Tilly will be wanting her night time walk, so I'll catch you all later all the best to you friendly folk.

Debzeb

Gordon wow ! My bestie is dyslexic but she wasn’t diagnosed she’s 50 something went to evening classes. One of her sons is similar to my age she fort to get her son help in school his nearly 40 has done well for himself puts kitchens in done a apprenticeship his very clever great lad but my friend i met at my floristry college , she has done so well - she shut our shop when she knew I couldn’t return she said it wasn’t the same without me !! But obviously she had to find another career for herself she got a job in boots the chemist worked her way up to do a drug dispensing training course she thoroughly enjoys it. My mum enjoys crime books , an I reminisce watching frost or midsomer or marple lol turning into my nanny ! You sound like you’ve achieved so much your wife is watching over you an very proud I bet ? good news too my mums back at home after her op I still can’t visit still got a funny throat!! !! Off to my drs Thursday I’ve had it for three months!  Well done again hope you have had a good week so far it’s been so chilly ! Bit of a shock after the nice summer!! Catch you soon ? 

Gordonmrln

Thanks, Debs for your kind words I do hope you get your sore throat sorted out there seems to be a lot of this going around, I'm just booking in for my Flu jag at the Docs I get it every year at this time and you are so right about the cold. I live in a very rural location and we are high up so when its cold its really cold, I've notched up my central heating and got my logs burning on my open fire, on an evening I light my candles get my Fire up and glowing and I snuggle up with my wee Tilly and we get set for the night, its nearly so perfect, I've just had my loft insulation topped up on this Government Scheme that's going around so I hope to be even warmer this winter. Just a quicky before I go If your friend or anyone you know is suffering from Dyslexia or just struggles with there writing and Grammar I have a piece of software called "Dragon 12" which is a voice-activated software, it's a dream all you have to do is talk, it does the rest it writes for you, it uses the correct grammar, and correct spelling, and it learns the more you use it, it also learns dialect, like the way we speak, for example, Scottish, Gordie, Scouse, Yorkshire, whichever way you speak the software learns and then as the more you use it the more it understands what you are saying, it does take a while to get used to it but I found it a really useful piece of PC software. Anyway, I've gabbed on long enough now you take care of yourself, Debs and well done to your friend its good to know that we keep on fighting the fight, I'll catch you later and we'll have another natter. Take care from Gordy & Tilly. 
 

Debzeb

Are you up north scottish? Gordy the way you text makes me think your Scottish lol ?you keep you n Tilly warm I’m more tight only put one Heater on low take the edge off in the bedroom I have a blanket on my lap at the mo watching Corrie barrel of laughs ! Hope you have a good night ?