Why? — Scope | Disability forum
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Why?

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Kraylow
Kraylow Community member Posts: 3 Listener
in Coffee lounge
Every moment of my existence I ask the same question, why? Why am I here? Why do I carry on just to please others? Why bother? And the only reason is to not upset those who love me.  
I started a new blog in the hopes it might help but so far it's just a stupid experiment that is failing like my mind and body.
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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
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    Hi @Kraylow, sorry to hear how you are feeling at the moment.
    I can only say how I'm coping because I don't feel that I'm in a position to give anyone advice. 
    Since the beginning of the year my health has gone steadily downhill, to the point of now being confined to bed. I can no longer sit up, stand up straight or walk. Every movement causes me severe pain, even turning round in bed. I am in severe, uncontrolled pain 24/7. I've often thought that I cannot continue with such a useless existence.
    I carry on because I maintain hopes of somehow getting the treatment and pain relief I need. As we all know, the wheels of the NHS run very slowly... 
    I listen to all sorts of music, prayers, meditations, etc and that has to be enough for now. The limitations of my health conditions don't define the real me. I have to tread water for now but I still have my hopes that one day I can return to my artwork, my story-writing and other activities I enjoy.
    I hope to God it happens 

    Likewise, your good self can still shine through your limitations. Live for the things that bring you pleasure. Talk about them in your blog. You can't help but be positive and hopeful when you mention things that you love.
    Best wishes and good luck. 
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Hello to the both of you Kraylow and Oxonlady.

    The level of your disabilities/health issues is severe. More severe than most, sadly.

    I also have a serious condition. I have Spinal Primary Progressive Multiple Sclerosis. My situation is tough. I need help with all my personal care...there's no dignity! I am a full time wheelchair user.
    I have had MS for 23 years...but diagnosis only came in 2019.
    I had seen many neurologists and had umpteen tests.
    I was wrongly diagnosed with a very serious genetic disease..HSP....hereditary spastic paraplegia. I was terrified incase I passed it to my children and grandchildren.

    I was quite relieved when I was told it is definitely MS...a rare type.

    So back to you Kralow.....Have you had a diagnosis? I know life can be the pits at times....and we all know how low we can feel.
    You say you have people who love you...I do too, but they are not living my life and we cant blame them nor anyone else for not understanding fully.

    I have a good team of carers, who help me a lot. They take me out too, which is priceless, plus it gives my hard worked hubby a break!

    I am hoping you can find your way through this mire and become more at peace with yourself.

    Oxonlady....you sound  to have made a pact with your condition. Have you had a diagnosis? Your kind words to Kraylow are positive and helpful. I hope he/she finds them that way.

    This forum is a place where we can have a rant....chuff knows we all need one now and then!
    Peace to you both
    love Pollyanna xxx 
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  • Kraylow
    Kraylow Community member Posts: 3 Listener
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    pollyanna1052 thank you for your insightful words.  I have some doctors telling me I have fibromyalgia, some saying I need more tests and have in the past been wrongly diagnosed too. Sadly and frustratingly for everyone else I am an old fashioned Manic who has Aspergic traits and a brain like mush from years of drug abuse.  My afflictions are less physical, although I hurt all the time and my joints are becoming less able than they should be.  It is more mental and I am in no way able to process the idea of feeling happy.  I can sometimes for fleeting moments have challenges that stimulate me and occupy my mind to the point of not feeling terrible, which is a welcome break.  I really do appreciate what you and others try to do with words and know deep down that it should help and I thank you for it.  
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    Hi @Kraylow I don't think we've spoke before so it's lovely to meet you and I'm really sorry to hear about how you've been feeling.  

    These sound like really challenging, draining thoughts you are having and I wondered if your GP was aware of how it's going?  Do you have any other support i.e. from a community mental health team?  I hope you have a good support network to lean on, and you mention your loved ones which is important, but I'd encourage you to relay how you're feeling to those involved with your care. 

    If you ever want to talk to someone 'neutral' from a mental health organisation, then there a few who you can contact anytime of the day - 24/7.  These are:
    While if you ever feel like you may harm yourself, or that your welfare is in danger, please call 999 and ask for an ambulance to stay safe.

    Starting a new blog can be tricky at the best of times but good for you on having a go, what's making you feel like it's failing?  Also, what kind of challenges do you find stimulating?  Do you have any particular interests that help occupy your mind?  I wonder if we can find any local groups close to where you live.  

    I'm going to email you now to offer a little more support, but in the mean-time keep talking to us and know you have virtual friends who care :)  Take care and speak soon.  
    Online Community Co-ordinator

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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
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    Hi @pollyanna1052, thank you for your kind words.
    I very much believe in taking charge of my own mental wellbeing because no one else knows me as much as I know myself. 
    My physical conditions are very challenging. I have Addisons, Fibromyalgia but worst of all, my spine is damaged. My discs keep herniating and pressing on nerves, which is excruciating. I've had five spinal operations so far, which does relieve the pain each time but the condition is degenerative. This time I not only have nerve pain but problems with my hip and shoulder, where parts of the bones have died. Hence multiple sites of pain and severe restrictions of movement. As part of my pain relief I was given Fentanyl tablets but I reacted to them and they nearly killed me. The remaining medication does not control the pain...
    There have been times when I've screamed and cried in pain for hours on end. 
    I want a return to some normality and the pain levels to be bearable. Meanwhile, I realised that I had to live from hour to hour, never mind day to day. I love music, the psalms, prayers etc so I try to focus on the words and tunes to just go through each day and night. A few times I've felt like giving up but then I don't see why I should. I love parts of my life and I try to think that one day things will be better... Each person has to find their own way of coping, we are all different. I can't rely on family for various reasons so I have to be self-sufficient. I have a lovely Carer. 
    My best wishes to everyone on this Forum. 

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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Thankyou Kraylow and Oxonlady for both your replies.

    I feel we understand each other, even though we have different conditions etc. Our limitations and pain levels unite us.
    Keep the faith and we'll battle on together, with the help of this amazing forum.
    Love to you both.
    Pollyanna xxx
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
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    If your problems are more to do with the mind I’d recommend reading some introductory books on Buddhism, they deal with the mind like no other. Could try YouTube as well or instead but I’d suggest listening to only monks, male or female, or of course the Dalai Lama himself is on YouTube. 

    I myself am i interested mostly in the philosophy rather than the religion and get a lot out of it mentally. 

    I wish you well.

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Dragonslayer
    Dragonslayer Community member Posts: 2,165 Pioneering
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    My rant of the day.

    In the last few years, I have lurched from one illness to another. Spinal Stenosis, Two ops. (Neither really worked.)
    A cancer scare, (Thankfully false.) MRI found an aneurism that was 10centimeters across, which was news to me. (Another op). I am waiting for a hip replacement operation, but Kidney failure put a stop to that. I am now on Kemo (For 6 months) I may have this for the rest of my life. I have to have weekly blood tests. I have some hair loss as a result, swollen legs, and bad blood marks on both my arms.
    I find it very hard to walk and at times think it all too much. But The body can put up with quite a lot and so I get used to it all. It's the mind that suffers most.
    Keep the mind active, hobbies and the like. Everyone can find something good about themselves, if only they search in a positive way.
    Everyone has something to give and contribute to others. 
    The question was (Why?)
    That's life, I guess!
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