Not sure if I'm "ill enough" for a wheelchair

Nevaehisill

I turn 18 in Feb. I'm being referred to a specialist by a gp due to him believing I have fibromyalga (not sure if that's the correct spelling) after I've had awful pains for years with no answers. My friends all walk up the stairs to college classes together and I have to take the lift on bad days due to the pain it can cause to get upstairs. They also go on long walks during their lunch break and I cannot join them as the one time I did it was awfulllyyy painful. I cannot even walk to my local shop without fatigue and my body absolutely killing. I feel like I'm missing out on so much of my life and youth overall. I cannot do anything fun without being in pain and when I do try I end up wanting to go home and just give into the pain. I feel very alone honestly. I know there are mobility aids available however I have a huge fear that I'm not "ill enough" or in "enoughhh pain" to have them but I just want my freedom back. Does anyone have any tips on getting over this imposter syndrome of sorts and how to feel guilt free and deserving of such aids? Thank you for reading(:

Binky1234

I have crohns, arthritis, Vitamin B12 aka folate deficiency anaemia plus fibromyalgia and l can confirm fibromyalgia is extremely painful and causes me severe fatigue along with the pain. Everyone is different but I find living with my illnesses I use any aid that makes my life easier whether that be a wheelchair, electric scooter, spiked chopping board etc if it works and helps me then I'm all for it. I have a bath lift that I thought I would not use too often and I admit I use and need it evwrytime I have a bath as a bath seems to help my fibromyalgia pain.

My advice is if it works for you then why not.

I know your very young to think about aids and what others think but honestly my advice is do what makes your life easier as fibromyalgia is extremely painful and causes me great fatigue tbh.

I wish you all the best.

Nevaehisill

Binky1234 said:

I have crohns, arthritis, Vitamin B12 aka folate deficiency anaemia plus fibromyalgia and l can confirm fibromyalgia is extremely painful and causes me severe fatigue along with the pain. Everyone is different but I find living with my illnesses I use any aid that makes my life easier whether that be a wheelchair, electric scooter, spiked chopping board etc if it works and helps me then I'm all for it. I have a bath lift that I thought I would not use too often and I admit I use and need it evwrytime I have a bath as a bath seems to help my fibromyalgia pain.

My advice is if it works for you then why not.

I know your very young to think about aids and what others think but honestly my advice is do what makes your life easier as fibromyalgia is extremely painful and causes me great fatigue tbh.

I wish you all the best.

Thank you so much. I wish I didn't have to consider aids at my age but I want to be able to do what others can. Thank you though and I'm so glad you've found things that ease your pain

L_Volunteer

I hear you @Nevaehisill - that feeling of wanting to be able to do what others can even if that means considering aids which you wish you did not have to because of your age 

Alex_Alumni

Hello @Nevaehisill and thanks for reaching out As someone with cerebral palsy (CP), I first started using a wheelchair from my mid teens, as it helped me to manage getting about more easily without the pain and fatigue I would otherwise have. 

As an adult I see my chair as something which grants me a great deal of independence, and empowers me to live as independently as I can. It's a tool for travel, just like a car, bus, or train. But I can't pretend that I felt that way in school.

Growing up I had a bit of a mixed reaction to the idea of identifying as disabled, especially when the majority of my friends at the time were non-disabled, and didn't really 'get it' when I tried to explain how my condition varied. I felt like I wasn't one or the other, but somewhere in between. 

When others don't understand variable conditions, or view you as 'lesser' for needing mobility aids, it can be easy to feel othered and isolated. It can be hard to battle against these negative attitudes and assumptions, even within ourselves. Something that's really helped me is learning about the social model of disability. 

Getting over the guilt of not feeling 'disabled enough' can also be a challenge, because the systems society has in place for support can reinforce the idea that you need to justify the support you need, and 'prove' your disability.

Something which might help is thinking about how everyone is interdependent, no matter what age or what conditions they might be living with. Disabled people are just as capable as non disabled people, but we all go about things in different ways, because the world today is largely designed around non disabled ways of living.

I hope that's making sense, and is helpful for you, but please ask if you'd like to chat more about this  

Have you discussed any mobility aids with your GP so far?

Nevaehisill

Alex_Scope said:

Hello @Nevaehisill and thanks for reaching out As someone with cerebral palsy (CP), I first started using a wheelchair from my mid teens, as it helped me to manage getting about more easily without the pain and fatigue I would otherwise have. 

As an adult I see my chair as something which grants me a great deal of independence, and empowers me to live as independently as I can. It's a tool for travel, just like a car, bus, or train. But I can't pretend that I felt that way in school.

Growing up I had a bit of a mixed reaction to the idea of identifying as disabled, especially when the majority of my friends at the time were non-disabled, and didn't really 'get it' when I tried to explain how my condition varied. I felt like I wasn't one or the other, but somewhere in between. 

When others don't understand variable conditions, or view you as 'lesser' for needing mobility aids, it can be easy to feel othered and isolated. It can be hard to battle against these negative attitudes and assumptions, even within ourselves. Something that's really helped me is learning about the social model of disability. 

Getting over the guilt of not feeling 'disabled enough' can also be a challenge, because the systems society has in place for support can reinforce the idea that you need to justify the support you need, and 'prove' your disability.

Something which might help is thinking about how everyone is interdependent, no matter what age or what conditions they might be living with. Disabled people are just as capable as non disabled people, but we all go about things in different ways, because the world today is largely designed around non disabled ways of living.

I hope that's making sense, and is helpful for you, but please ask if you'd like to chat more about this  

Have you discussed any mobility aids with your GP so far?

I have put in a request to talk to my GP about mobility aids as I have my rhumotology(probably spelt that wrong) appointment soon to see if fibromyalgia is the reason for my pain however my GP has a really bad rep and for good reason so may have to find elsewhere or another doctor to mention aids to as I doubt I will get to talk to them

Nevaehisill

Alex_Scope said:

Hello @Nevaehisill and thanks for reaching out As someone with cerebral palsy (CP), I first started using a wheelchair from my mid teens, as it helped me to manage getting about more easily without the pain and fatigue I would otherwise have. 

As an adult I see my chair as something which grants me a great deal of independence, and empowers me to live as independently as I can. It's a tool for travel, just like a car, bus, or train. But I can't pretend that I felt that way in school.

Growing up I had a bit of a mixed reaction to the idea of identifying as disabled, especially when the majority of my friends at the time were non-disabled, and didn't really 'get it' when I tried to explain how my condition varied. I felt like I wasn't one or the other, but somewhere in between. 

When others don't understand variable conditions, or view you as 'lesser' for needing mobility aids, it can be easy to feel othered and isolated. It can be hard to battle against these negative attitudes and assumptions, even within ourselves. Something that's really helped me is learning about the social model of disability. 

Getting over the guilt of not feeling 'disabled enough' can also be a challenge, because the systems society has in place for support can reinforce the idea that you need to justify the support you need, and 'prove' your disability.

Something which might help is thinking about how everyone is interdependent, no matter what age or what conditions they might be living with. Disabled people are just as capable as non disabled people, but we all go about things in different ways, because the world today is largely designed around non disabled ways of living.

I hope that's making sense, and is helpful for you, but please ask if you'd like to chat more about this  

Have you discussed any mobility aids with your GP so far?

I am still waiting on my rheumatoid doctor appointment to see if it is, arthritis aswell. The doctor said if after that we could discuss options but everything is so tiring it's making me miserable. I try to go out with my friends and have fun to distract myself but by the time I've walked there im in too much pain and I'm annoyed and just want to go home or pass out. I always feel like I'm not ill enough though. In college I force myself up the stairs and cause myself agony because I'm scared someone in a wheelchair will see me using the lifts and think I'm faking it because they have it worse than me. Everytime i go out with my friends they always say to "this is why you need to get mobility aids" but I feel like I'll never be sick enough 

Kimmy87

I always say if you are at the point of considering an aid, you are definitely in a position to need to use one 

Hannah_Alumni

Hello @Nevaehisill

I'm sorry you feel so tired with it all. But I hope, that discussing everything and getting through all of that with your GP will be the final time and they can give you a clearer diagnosis and a plan to help. 

Please don't feel like you have to be "sick enough" to need mobility aids. If you need them to help make your walking more comfortable then please use them. I know it can be difficult to mentally overcome that. But, I think everyone here would agree, we'd rather you be as well in yourself as possible than struggle. 

Can I ask, have you ever heard of spoon theory? It was termed by Blogger Christine Miserandino and her blog But You Don't Look Sick. I found it very helpful when I felt I wasn't "sick enough".

WelshBlue

@Nevaehisill ... I agree totally with the other posters.  I gave in recently and started using a stick for the days that walking was really difficult/ painful

Some of the reason it took so long was stubborness/ pride on my part.  Plus the fact the longer I put pressure and strain on my body - the longer the fatigue and pain were lasting.  Boom and Bust. 
The more I was taking out of my body ... the longer it took to pay back/recover.

Chronic pain is debilitating mentally and physically, any aid that can ease that, if only slightly is worth considering.  But we're all different, only yourself can decide what is right for you.  When it is right for you

As someone who has lived with chronic pain for years, please don't put yourself through any more than you have to - your mental health, your body and your quality of life will thank you

Good luck with your appointments, and hopefully getting the answers to the why's and the way forward

Nevaehisill

Hannah_Scope said:

Hello @Nevaehisill

I'm sorry you feel so tired with it all. But I hope, that discussing everything and getting through all of that with your GP will be the final time and they can give you a clearer diagnosis and a plan to help. 

Please don't feel like you have to be "sick enough" to need mobility aids. If you need them to help make your walking more comfortable then please use them. I know it can be difficult to mentally overcome that. But, I think everyone here would agree, we'd rather you be as well in yourself as possible than struggle. 

Can I ask, have you ever heard of spoon theory? It was termed by Blogger Christine Miserandino and her blog But You Don't Look Sick. I found it very helpful when I felt I wasn't "sick enough".

Hannah_Scope said:

Hello @Nevaehisill

I'm sorry you feel so tired with it all. But I hope, that discussing everything and getting through all of that with your GP will be the final time and they can give you a clearer diagnosis and a plan to help. 

Please don't feel like you have to be "sick enough" to need mobility aids. If you need them to help make your walking more comfortable then please use them. I know it can be difficult to mentally overcome that. But, I think everyone here would agree, we'd rather you be as well in yourself as possible than struggle. 

Can I ask, have you ever heard of spoon theory? It was termed by Blogger Christine Miserandino and her blog But You Don't Look Sick. I found it very helpful when I felt I wasn't "sick enough".

I haven't actually heard of that. Would you care to explain if possible? (:

Hannah_Alumni

Spoon Theory is where the blogger and her friend basically discussed what day to day life was like for those with chronic illnesses / disabilities.

The consensus is that most people have endless possibilities and so have an infinite amount of spoons. But those with chronic illnesses and disabilities have limited numbers. So someone may wake up with only 12 spoons and realise the energy and time it took to wake up, wash their face, brush their teeth, take medication and get dressed could cost them 5 spoons. They then have 7 spoons to plan the rest of their day and once there are no spoons the person cannot do anything else that day. You could use tomorrows spoons but then you are left with fewer that next day. 

I had a situation recently where I had a limited number of spoons. I had woken after a rubbish nights sleep. I had work during the day, had to get a quick dinner and then doll myself up for an evening out at the pub planned. I knew I was not going to be able to do it all.

Let's say I woke up with 12 spoons. I felt exhausted from the rubbish nights sleep so there was 2 spoons gone. Work came first and that took up 7 of my spoons. I had 3 left and I knew cooking and cleaning up after dinner would take 2. Getting ready to go out would take 4 spoons and being at the pub was going to take up about 3-4 spoons (depending how long I stayed). So I didn't go out. I used 2 spoons to sort dinner and clean afterwards and saved the 1 spoon I had left over.