Neurological conditions
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Should my medication have cured all my disabilities?

tcellmutationtcellmutation Member Posts: 125 Pioneering
edited January 2019 in Neurological conditions
Okay please go easy on me I already think this may be such a stupid question and please excuse title discussion can’t think of what to title it. Here goes.

I have a number of autoimmune neurological conditions and take a vast amount of medication throughout the day.

My question is, even tho I’m feeling better from taking the medication and side effects seem to have passed, am I now well? Am I still ill?

If I stay within what I call my “zone” of daily living which is my whole day ie can’t do anymore then I’m generally good. If I go out of my “zone” then I get sick. I get physically sick. My balance is all over the place, my seizures come back “focal seizures” and no getting around it with positive thinking etc because it’s literally all physical I have to lay down.
Anything physically or mentally demanding causes problems.

Inside of my zone I’m okay. Regardless of what my zone consists of which is personal to myself Can I get some thoughts from others to help me better understand from any outside point of view. When i’m inside my zone I look and feel fine to and nothing is noticeable to myself or anyone else but it can turn dramatically.

Thanks

Replies

  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @tcellmutation

    Welcome it’s great to meet you this evening.

    Yes following my Stroke + B/I + Opp’s.

    I have been on max doses of my meds for some years now.

    I have tried to come off some of these a number of times now.

    But as soon as I do this that’s when everything goes “haywire”

    So from my point of view I would have to say no (from personal experience)

    @steve51




  • tcellmutationtcellmutation Member Posts: 125 Pioneering
    steve51 said:
    Hi @tcellmutation

    Welcome it’s great to meet you this evening.

    Yes following my Stroke + B/I + Opp’s.

    I have been on max doses of my meds for some years now.

    I have tried to come off some of these a number of times now.

    But as soon as I do this that’s when everything goes “haywire”

    So from my point of view I would have to say no (from personal experience)

    @steve51




    Because we are on these meds that make things bareable to a limit, and ppl see us a normal (which obviously we want) they won’t see our disability’s until we either come off the meds or for me to come out of my zone which I really don’t want to do just to show people and believe me if they want to see proof then they’ll see it within no time at all. 

    I’st not like I want to prove it to ppl it’s...I don’t know...its ppl wont understand my limits until they see for themselves. I am unable to work, that’s a no no. I worked in I.T and absolutely loved it! All my problems came overnight. Fine one day and nothing the same the next. Now 4 years on and here I am.

    I think what’s bothering me is i am unable to make a living and I have an assessment coming up. It’s a PIP assessment.

    I guess I need advice on how to approach this assessment. From my previous post you can see that I’ll look fine going into the interview and during the interview.

    So what do I do? They’ll look at me and be like...ok you have tons of appointment letters and and tons of diagnosis letters stating your 6 neurological conditions but you look...fine!

    A: Should I go in and explain all of this
    B: Stop taking my meds for a few days
    C: Exercise, but that’ll put me in hospital for sure so probably not the best option. Plus I’d miss the appointment. I’ll scrap option C

    Any thoughts?
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Thanks for sharing this with us @tcellmutation.

    I don't think it's possible for anybody to give a 'yes' or 'no' answer to the 'am I still ill?' question but it's a really interesting discussion point. Personally I would say that the only judgement that really matters in this case is your own, and your own perception of your health, but it would be interesting to hear what our other members think too!

    Under no circumstances should you do anything that could jeopardise your health or put you in danger, such as stopping your meds or exercising. PIP is designed to see what day-to-day life is like for you.  If you have any questions about the assessment process, feel free to ask and we'll do our best to advise. 
  • danworgdanworg Member Posts: 3 Listener
    @tcellmutation   this is one of my major concerns.
    I am on medication that has been going back for nearly 10 years.Here is a list of my medications just to give an idea of what I take and to possibly judge the consequences of coming off them....
    adalat,atorvastatin,naproxen,water tablet ( forgot the name ),omeprazol,quitiepine,pregabalin,dulexitone,fentynly (patches),co-codamol (8 max every day),morphine liquid.
    I haven't put the dosages,but suffice to say that they have crept up over the years and are high dosages now.
    And like yourself ,I used to be able to come off my meds so that I was able to show symptoms to people.Oh how i wish I had never ever tried this without medical supervision,as I tried to kill myself by hanging (thank goodness my son found me ) and further more tried to self harm....and all this from a previously mentally stable 50 year old man.Oh how life can change.
    Your meds have been prescribed for a purpose.They may have changed from time to time in order for the gp to get control of your symptoms,but they are prescribed for the very reason of trying to HELP you cope with your conditions.
    Hopefully pip will see from your overall condition and medications,gp letters etc that you are unable to work etc due to your illnesses,but please don't end up in hospital as a designed way of proving your illness.

    @danworg







  • tcellmutationtcellmutation Member Posts: 125 Pioneering
    Thanks for sharing this with us @tcellmutation.

    I don't think it's possible for anybody to give a 'yes' or 'no' answer to the 'am I still ill?' question but it's a really interesting discussion point. Personally I would say that the only judgement that really matters in this case is your own, and your own perception of your health, but it would be interesting to hear what our other members think too!

    Under no circumstances should you do anything that could jeopardise your health or put you in danger, such as stopping your meds or exercising. PIP is designed to see what day-to-day life is like for you.  If you have any questions about the assessment process, feel free to ask and we'll do our best to advise. 
    Thanks for your comment. I’ll get more to the point as I’m dancing around the subject at the moment.

    If I score 0 points because on the day I look fine is this what I should do? Is this method doomed to be dragged out for a tribunal because the assessor may not be able to correctly see the problems behind my appearance?

    I am using 0 points as the actual outcome for what they’ll see on the day if it’s a good day and with the accessor ticking boxes and viewing me as just a number.

    Is it wrong to go in “acting” like it’s a bad day when it actually is a good day?

    Financially I won’t be doing myself any favours as let’s be honest, we all need money to live.

    I’m stuck from being totally honest on the day (if it is actually a good day on the assessment day) or not.

    40% of me says be honest but 60% of me says don’t be a fool and shoot yourself in the foot as you could be in hospital next week, have no money and now the long winded PIP process begins again.

    Matt
  • tcellmutationtcellmutation Member Posts: 125 Pioneering
    danworg said:
    @tcellmutation   this is one of my major concerns.
    I am on medication that has been going back for nearly 10 years.Here is a list of my medications just to give an idea of what I take and to possibly judge the consequences of coming off them....
    adalat,atorvastatin,naproxen,water tablet ( forgot the name ),omeprazol,quitiepine,pregabalin,dulexitone,fentynly (patches),co-codamol (8 max every day),morphine liquid.
    I haven't put the dosages,but suffice to say that they have crept up over the years and are high dosages now.
    And like yourself ,I used to be able to come off my meds so that I was able to show symptoms to people.Oh how i wish I had never ever tried this without medical supervision,as I tried to kill myself by hanging (thank goodness my son found me ) and further more tried to self harm....and all this from a previously mentally stable 50 year old man.Oh how life can change.
    Your meds have been prescribed for a purpose.They may have changed from time to time in order for the gp to get control of your symptoms,but they are prescribed for the very reason of trying to HELP you cope with your conditions.
    Hopefully pip will see from your overall condition and medications,gp letters etc that you are unable to work etc due to your illnesses,but please don't end up in hospital as a designed way of proving your illness.

    @danworg






    Hi @danworg

    “Your meds have been prescribed for a purpose.They may have changed from time to time in order for the gp to get control of your symptoms,but they are prescribed for the very reason of trying to HELP you cope with your conditions.”

    This is a very interesting point. It’s one that one of my consultants told me whilst in hospital last week. My meds always change doses or even change to different drugs altogether.

    I”m under a few consultants and have so much evidence (don’t like calling it that) through a vast amount of diagnosis letters etc. They can even call all of my consultants including my GP’s and speak to any doctor there. (It’s been a long road)

    I am now very interested in this genuine situation where there are clearly underlying problems but can’t be seen on the day but can be on others. I would like to contact PIP about this situation and see what answers I can get. From what I think I understand so far it’s how they see you in the day.

    Matt







  • telscopetelscope Member Posts: 37 Connected
    I have to take prescribed medication to control my Epileptic Seizures. If I didn't take them I will be facing the problem of having more frequent seizures. So If you're taking these medicines, under doctors orders, you are in the right. I even mentioned this type of thing when I spoke to my PIP assessors.
  • tcellmutationtcellmutation Member Posts: 125 Pioneering
    telscope said:
    I have to take prescribed medication to control my Epileptic Seizures. If I didn't take them I will be facing the problem of having more frequent seizures. So If you're taking these medicines, under doctors orders, you are in the right. I even mentioned this type of thing when I spoke to my PIP assessors.
    Sorry probably name being silly but what do you mean by “you are in the right”? 
  • tcellmutationtcellmutation Member Posts: 125 Pioneering
    If I have a headache and I take paracetamol my headache goes away i think? Unless it hasn’t but the pain has gone and by the time the paracetamol has ran it’s course the headache has actually gone.

    I feel I qualify (for lack of a better word) to be benefiting from the PIP system as my needs do vary and are at times unpredictable. I think I’m a little worried that I will only qualify for the very low end of PIP. I’ll literally be living on pennies. I know some people say it’s not how much you get it’s what you do with it but I feel this is very different. Hopefully I’ll be taken care of. Those in good health I admire!
  • wilkowilko Member Posts: 2,137 Disability Gamechanger
    That's the trouble, we look well feel good but because of our illnesses or disabilities we have become used to our life styles keep popping the Meds ect. So as for PIP acessments it's our abilities to meet the descriptors in a repeatedly, safely and timely manner. We look after our apearence dress smartly yet sometimes unless using aids treated as an able bodied person, should we wear a badge.????
  • tcellmutationtcellmutation Member Posts: 125 Pioneering
    wilko said:
    That's the trouble, we look well feel good but because of our illnesses or disabilities we have become used to our life styles keep popping the Meds ect. So as for PIP acessments it's our abilities to meet the descriptors in a repeatedly, safely and timely manner. We look after our apearence dress smartly yet sometimes unless using aids treated as an able bodied person, should we wear a badge.????
    I have a blue badge I could wear that.
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