Remaining politically neutral during General Election 2024


Under guidance from the Electoral Commission and Charity Commission, it's important that Scope remains politically neutral during General Elections.

While we understand that this period will see many passionate discussions and do not want to discourage open discussion, we cannot allow discussions which are purely intended to influence voting.

As ever, please make sure that your comments remain respectful of other people's opinions and keep to our online community house rules.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

No more good days.

Options
woodbine
woodbine Community member Posts: 12,098 Disability Gamechanger
For the last few years I have suffered from side effects caused by what one GP described as a side effect of the "industrial amounts of industrial strength medication" I take every day, in total 34 tablets of 19 different meds. To write this I have to have one eye closed. to read anything I have to close one eye, my balance doesn't exist and my speech so slurred it sounds like I'm drunk.

In the beginning it would be like this for a day or two then I would be ok for a few days, not it is almost everyday.

The answer might be reduce my medication but it keeps me alive, stops my epilepsy from putting me in hospital every week, keeps my diabetes at a manageable level, stops me having more strokes or a heart attack the list goes on.

I rarely suffer from self pity but it's getting to the point now where it's ruining my life.
Thanks for reading xx

2024 Election won

Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 55,585 Disability Gamechanger
    Options
    Hi @woodbine sorry things not going great at the moment, have you spoke to the Dr to see if alternatives might help better, might be worth exploring 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,561 Disability Gamechanger
    Options
    I'm sorry to hear how much of a tough time you're having lately @woodbine, I would encourage you to have a chat with your GP about everything, and see what options you could pursue. 

    It can be difficult to feel good when things feel unmanageable, but if there's anything we can do to help or support you, please do ask :)
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Options
    Sorry to read this I can certainly empathise its very hard to balance when your vision  is affected one of big reasons I don't feel safe using my prosthetic  leg 

    Sugar levels massively impact vision as well sl the better that is controlled might help 

    Try contacting local sensory team they are great for helping you adjust 

    I know it's not like you to get down like this it's hard when you seem to be seeing deteriation 

    Are there any alternative medications that could help I'm not knowledgeable on these bur could be worth exploring with gp 

    Take care you know we are here if you want any support 
  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Options
    I literally wish you well @woodbine, I hope things can improve for you I really do.

    “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

  • Biblioklept
    Biblioklept Community member Posts: 4,948 Disability Gamechanger
    Options
    I so very wish I had some useful advice but I don't, what an awful balancing act between your health and your quality of life. :( I'm sorry @woodbine <3 I understand why it's getting you down.
    Are you under any specialists that can look at different medicines or other ways to help you?? 


  • 66Mustang
    66Mustang Community member Posts: 14,960 Disability Gamechanger
    Options
    Sorry @woodbine I don’t have any further suggestions to the above but just to say I’m thinking of you and wish you all the best.
  • woodbine
    woodbine Community member Posts: 12,098 Disability Gamechanger
    Options
    Thank you all for your support and advice, sadly not much can be done as I need to take all the meds I do take, I've discussed this with at least three different GP's non of them offered any help or ideas, and my last consultant was less than useless.
    xx

    2024 Election won

  • emancherry33
    emancherry33 Community member Posts: 3,640 Pioneering
    Options
    @woodbine so sorry to hear about your troubles, on the epilepsy side of things I was misdiagnosed with epilepsy for years and given horrible anti epileptic drugs for years which never helped. Have you ever had any genetic tests to find out what type of epilepsy or genetic mutations you have ?  My genetic tests took over 6 months each before I found out I had a genetic mutation not epilepsy and are no longer on any anti epileptic drugs which has improved my health dramatically. Maybe one thing that may help your epilepsy?
  • woodbine
    woodbine Community member Posts: 12,098 Disability Gamechanger
    Options
    I had two strokes the second lead to the start of my seizures I also had a cyst on my brain, the operation to reduce it went wrong and they had to remove it so I have to scars on my brain, I get your point but there has never been any doubt about my epilepsy, at the start 24 years ago I was having a dozen seizures a day it was only when the meds kicked in that they reduced to 3 tonic seizures a week and 4 or 5 absence seizures a day, but thanks for your ideas.
    I should add that I have since had another half a dozen strokes that haven't helped the situation.

    2024 Election won

  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    Options
    Sorry to hear this @woodbine always here for you x
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Options
    Nothing i can say @woodbine to make things better, so wish i had a magic wand, you are a big part of this forum and have a lot of well wishers, stay strong xx
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Options
    Morning @woodbine

    How are you getting on?

    It's lovely to see all the supportive replies that have been posted on this thread, I hope they help :) 
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • woodbine
    woodbine Community member Posts: 12,098 Disability Gamechanger
    Options
    @Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time. :'(

    2024 Election won

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Options
    It's a shame that it's now bad all the time, that must get quite frustrating at times @woodbine. Of course always ensure to look after yourself as best as possible, and we're always here if you need a chat.
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • Biblioklept
    Biblioklept Community member Posts: 4,948 Disability Gamechanger
    edited July 2022
    Options
    woodbine said:
    @Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time. :'(
    Do they know why it's gotten worse could it be something else on top or is it definitely a deterioration and build of up meds or something? I hope you're finding a way to be happy despite everything you've got going on <3
  • woodbine
    woodbine Community member Posts: 12,098 Disability Gamechanger
    Options
    woodbine said:
    @Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time. :'(
    Do they know why it's gotten worse could it be something else on top or is it definitely a deterioration and build of up meds or something? I hope you're finding a way to be happy despite everything you've got going on <3
    A few years back my optician said he thought it was "optic migraine" my GP at the time literally said that was "rubbish" I think its one of those things where you can't win.

    2024 Election won

  • Karen7788
    Karen7788 Scope Member Posts: 598 Pioneering
    Options
    Sending my best wishes to you @woodbine, I sincerely hope that things improve for you. 
  • Biblioklept
    Biblioklept Community member Posts: 4,948 Disability Gamechanger
    Options
    woodbine said:
    woodbine said:
    @Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time. :'(
    Do they know why it's gotten worse could it be something else on top or is it definitely a deterioration and build of up meds or something? I hope you're finding a way to be happy despite everything you've got going on <3
    A few years back my optician said he thought it was "optic migraine" my GP at the time literally said that was "rubbish" I think its one of those things where you can't win.
    That's even worse when they don't agree and you're just left confused!!
    If there anything you've noticed yourself that makes things worse or better or gives you slightly better days? 
Complete our feedback form and tell us how we can make the community better.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.