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Newbie who is anxious to tell anyone what I am experiencing

Welliboots93Welliboots93 Member Posts: 25 Connected
in Disabled people
Hi, I'm Jade. I'm 26 and I am a full time uni student. 
I do not know how these online forums work, and I feel completely exposed and vulnerable by expressing how I feel. However, I can't hold it in anymore with the pain I am experiencing because I have mobility disabilities. I use a crutch for now, but I can no longer walk to the shop without pain, I cant sleep, I can't sit down without every inch of my legs being in pain. I keep grieving for the life I once had and the fact that I have to face a life of pain which will not go away, I love going on holidays and being outdoors, and I feel embarrassed to tell anyone just what I am going through for fear of judgement. I feel like Im being dramatic by posting this or even telling people that I am disabled. Ive only just accepted that I am entitled to pip after so many years putting it off. For the past 18 years I have not known what it is like to walk pain free, and as I've got older my muscles in my legs have slowly just been giving up and I do not know what to do anymore.
Sorry for posting this. Obviously there is alot more too me than my disabilities, but right now it is taking over my life and I just wanted to get it off my chest. Thank you to anyone who reads this and sorry if its too long x
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Replies

  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    Hello @Welliboots93 and welcome to the community.

    There is no need to apologise, and hopefully you won't find anyone here judging you because you are in a lot of pain. 

    May I ask if you have a diagnosis?

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

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  • CressidaCressida Member Posts: 785 Pioneering
    @Welliboots93 I just wanted to say welcome to the forum. There are some lovely people on here and I'm sure people will come along to chat soon. Don't feel bad about off-loading on here, many of us have been in the same place. Pain is a very difficult thing to deal with. 

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  • chiariedschiarieds Community Co-Production Group Posts: 8,107 Disability Gamechanger
    Hi @Welliboots93 - I'd like to add my welcome to the community too. Thank you for joining & sharing about yourself. This is a completely safe environment to talk about any disability/health issue. Most of us here have such problems, or have an affected family member. We all care & support each other as we have some understanding.
    Your GP may be able to help you in addressing the pain you're experiencing, tho at present this might be a telephone consultation. There are also some resources you might look into.
    There's also some info here on Scope, some of which might be applicable.
    I hope some of the above is helpful. Please know we are here to support you in whatever way we can; just let us know. Do chat here any time & let us know how you're getting on. :)


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  • Welliboots93Welliboots93 Member Posts: 25 Connected
    Geoark said:
    Hello @Welliboots93 and welcome to the community.

    There is no need to apologise, and hopefully you won't find anyone here judging you because you are in a lot of pain. 

    May I ask if you have a diagnosis?
    Thank you so much for your response! I was feeling really upset when I wrote it but I never tell anyone the true extend of what I am going through! I have a diagnosis of chronic pain in the legs, knees and feet and have done since 2002, I also have osteoarthritis in my knees, and tendonitis in my right ankle on both sides, Aswell as archilles tendonitis. Plus my legs swell like a balloon and it could be lympthodema (I think that's the one) I've just not been tested for that. My entire legs are always hurting, but I try not to use my crutch or take meds as I don't know how to confidently tell people about what I am going through without sounding dramatic! Other than my disabilities I have a fab life, but as I'm getting older the more my legs take from me, such as going on long walks etc!

    Thank you, I hope you are well 
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  • Welliboots93Welliboots93 Member Posts: 25 Connected
    Cressida said:
    @Welliboots93 I just wanted to say welcome to the forum. There are some lovely people on here and I'm sure people will come along to chat soon. Don't feel bad about off-loading on here, many of us have been in the same place. Pain is a very difficult thing to deal with. 

    Thank you for the very warm welcome and response! I wish I knew about this place a while ago! It's nice to know you're not alone. And although I'm not alone if my life, and those people are great, they just don't understand how draining it is to be in pain etc and constantly have to go doctors etc and how it affects your mental health (not their fault!) so thank you for understanding. 
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  • Welliboots93Welliboots93 Member Posts: 25 Connected
    chiarieds said:
    Hi @Welliboots93 - I'd like to add my welcome to the community too. Thank you for joining & sharing about yourself. This is a completely safe environment to talk about any disability/health issue. Most of us here have such problems, or have an affected family member. We all care & support each other as we have some understanding.
    Your GP may be able to help you in addressing the pain you're experiencing, tho at present this might be a telephone consultation. There are also some resources you might look into.
    There's also some info here on Scope, some of which might be applicable.
    I hope some of the above is helpful. Please know we are here to support you in whatever way we can; just let us know. Do chat here any time & let us know how you're getting on. :)


    Thank you for your lovely response and welcome! What you have wrote is very useful as I need to do some exercise but the only thing that helps me is swimming (which we can't do right now!) so thank you for your advice and guidance! I'm feeling alot better since my original post, I just get lost as to what to say to people when it comes to my disabilities and don't usually seek help, so thanks for making me feel accepted. 
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  • atlas47atlas47 Member Posts: 118 Pioneering
    Hi @Welliboots93

    A very warm welcome and sorry to learn about your problems.

    You should not suffer in silence and nobody should judge you.

    I have similar problems in my back, which causes unrelenting pain.

    The best thing I ever did, was to attend a Pain Management Programme, might be worth speaking to your GP.

    Hope you are able to keep with your studies as best you can.

    Best wishes
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  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @Welliboots93 and welcome to the Community.  It's nice to meet you and thank you for sharing with us.  You have been very brave in reaching out to us, but please don't apologise for explaining your circumstances and you are certainly not being dramatic!  I'm sorry to hear you are struggling so much with your pain.  Having some pain myself, as a lot of us do on here, it can take over your life somewhat and can really get you down at times so what you are experiencing is perfectly normal.  I'm sorry to hear you have felt judged at times as nobody should ever make you feel like that.  Your pain is not your fault and you have no control over it. 

    I hope you have found the above advice and suggestions to be helpful.  I would certainly reiterate what @atlas47 has said, that a Pain Clinic may be a very good option for you so maybe once we are out of lock-down, you could speak to your GP about a referral.  Anyway, please chat to us anytime as that is what we are here for and we do understand how you feel.  

    Glad to hear you have a very fulfilling life apart from this.  It is good to keep busy!  I hope you enjoy your time with us and feel a bit better soon.  Please keep in touch and let us know how you are getting on and if we can be of any help/support at all then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,955

    Scope community team
    edited April 2020
    Hi @Welliboots93 and welcome to the community.
    I can only imagine how tough it was for you to come here and express how you feel, but I'm really glad you did. While we can't wave a magic wand and make your pain go away, we're a friendly community and are always here if you need to lean on us for a bit of support.

    Hopefully some of the suggestions above might help, but in the meantime please stick around, maybe join us in the coffee lounge for some lighthearted chat and make sure to let us know if there's anything we can do. :smile:

    Can I ask what you're studying at uni?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey. 
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