Feeling down — Scope | Disability forum
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Feeling down

Transverse
Transverse Community member Posts: 34 Connected
in Disability rights and campaigning
Is it normal to have more down days than up days, im feeling tired more often too. There does not seem to be any l8ght at the end of the tunnel with this TM.
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  • woodbine
    woodbine Community member Posts: 11,607 Disability Gamechanger
    Hi @Transverse sorry to hear you are feeling down, if you are feeling tired a lot as well it might be an idea to speak to your GP ?
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    I was severely depressed in the early days of my diagnosis. Like yourself, I couldn't see the light ar the end of the tunnel. For me, it was a very long and rocky tunnel, with many obstacles. There will be a light eventually, it really helps to take things one day at a time.
    Disability Gamechanger - 2019
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  • Transverse
    Transverse Community member Posts: 34 Connected
    Thank you, i just cant take this change of life, i want to be back to normal life, back working and driving...
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    It took away my ability to work too, so I can relate to that. It is a very hard adjustment to take on. Are you receiving any emotional support? I had a little during my hospital stay and it did help. Not a great deal but enough to get me through the early days.
    Disability Gamechanger - 2019
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  • Transverse
    Transverse Community member Posts: 34 Connected
    No support, im dealing with it all on my own, trying to think positive and saying to myself i will get better and lead a normal life, but it is starting fade from my clasps..
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi @Transverse Welcome sorry to hear you are feeling down, it is very hard to deal with not working and not driving when that is the life you are used to.

    I too had this taken away form me 3 years ago and will not be able to get back to these activities.

    Take each day at a time it does take time but it does get better and you start to find new things to enjoy
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    The one thing I so badly wanted was someone who knew exactly how I was feeling, why I was feeling the way I was. But nobody I knew had heard of Transverse Myelitis before I was diagnosed. I felt very alone and like the world was against me. 

    The pandemic certainly hasn't helped matters. I can't recommend intensive physiotherapy and occupational therapy high enough - if it weren't for these then I would still be bed bound, unable to do anything at all. Unfortunately, I know these services aren't immediately accessible. It is worth speaking to your GP/consultant to see if there are any rehabilitation centres in your area to see what they can offer.

    Intensive physio at rehab was better for me rather than the physio I received in hospital. More equipment was available and I was able to progress a lot further then anybody thought I would.

    I think most rehab centres offer 12 week programmes, (I ended up staying 6 months in rehab). I know the thought of 12 weeks is daunting, but they enable you to do so much and when you look at it, 12 weeks is nothing when compared to getting your life back.
    Disability Gamechanger - 2019
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Transverse, sorry you aren't feeling great at the moment. Just wanted to check in to see how things are today. :)
    Scope

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  • Transverse
    Transverse Community member Posts: 34 Connected
    Thank you, im really down today, been crying  so frustrated, just want to be back to normal. 
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Transverse,

    It can be really frustrating and upsetting when your health changes, you are allowed to feel in way. Allow yourself the time and space to process how you feel and the changes. You might find writing it down helps.

    Support is out there and the community is here for you. Am I right in think you have no physical or emotional support?

    GP should still be doing telephone appointments and can get referrals started.

    Take care and reach out if we can do anything to help.
    Scope

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  • Transverse
    Transverse Community member Posts: 34 Connected
    Feeling better today, i had feeling come back in 2 of my fingers, and knee seems a bit stronger, this has given me a bit of hope that i can get over this, just how long it will take i really dont know. Just these sensations in my legs driving me mad tonight. Hope tomorrow will be brighter..
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  • Transverse
    Transverse Community member Posts: 34 Connected
    Feeling rotten today, aching all over, joints painful, is this normal with transverse
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