After reading some posts on this thread I don`t think I`ll ever moan again !!
As for some of you not being able to get DLA with your conditions I think it`s disgusting and hope that when they overhaul the system. you get all the benefits you need to make life a little more bearable. Hard enough to cope with the illnesses without having to suffer financially too
Just what to say how humbling it is to read about the OP & others dealing with their difficulties with such fortitude You all have my deepest admiration & good wishes that things can get better.
To the OP, I helped a friend out yesterday with a fundraiser and now I feel like I've been run over by a bus so not feeling so positive today lol!
From reading your posts it sounds like you have a great support network, I get emails from a lot of people who have chronic illnesses who get no support because they look ok. I put on my FB status today that I was aching all over and my glands were up and my sis commented that she had flu too, I had to make the comment that no, it wasn't flu just a worse day than usual. Also when I have said that having ME/Fibro is like having flu every day one of my brst friends said I should be able to cope with it better than other people who have flu because I'm used to it!! Most people when they have flu take to their beds and write 'I'm dying' statuses. Well to a lessor or larger extent that's how we always feel but we have to function because there isn't an end in sight.
On another note, the poster who said you were good at writing might be onto something there, why not try your hand at writing something? You could start by writing a blog maybe? I'm sure we'd all sign up for it. There are plenty of specialist magazines too who may not pay you for an article but will be more willing to accept it than a more mainstream one, my point being getting a few things accepted quickly will give you more confidence.
A couple of people have suggested I turn my blog into a book but I can't do that as well as GlamSticks, I'm not superhuman, but maybe you could write a book based on your experiences of illness?
Anyway, I'm off now to retreat into a painkiller induced stupor (I have a friend visiting later and determined not to cancel!)
((hugs))
Wow everyone is so inspiring I suffer from IBS not as severe as some people, Asthma,Psorisis, Psoritic Arthritis, Chronic Rhinitis not as serious as what people have mentioned on this thread.
Ruby Shoes you are such an inspiration the Glamsticks are fabulous everyone on here is very positive I get down sometimes about it all but reading this thread makes me realise my problems pale in comparision thank you for sharing.
Well, I'm the wrong person to ask as I'm just having enough trouble coming to terms with my diagnosis of MS as well as a previous diagnosis of Fibromyalgia and the odd bout of sciatica.
I've found the 'but you don't look sick' site to be very helpful for people with invisible disabilities and their spoon theory is a good way of explaining how Fibro affects you day to day.
It's going to be a while before I start feeling positive, but good luck and gentle hugs to everyone who's been diagnosed with multiple conditions.
Well, I'm the wrong person to ask as I'm just having enough trouble coming to terms with my diagnosis of MS as well as a previous diagnosis of Fibromyalgia and the odd bout of sciatica.
I've found the 'but you don't look sick' site to be very helpful for people with invisible disabilities and their spoon theory is a good way of explaining how Fibro affects you day to day.
It's going to be a while before I start feeling positive, but good luck and gentle hugs to everyone who's been diagnosed with multiple conditions.
I'd never heard of that site, thank you for mentioning it. I was wondering why people were talking about spoons in this thread
Hugs to you too Did you see my post about the expert patient programme?
I'd never heard of that site, thank you for mentioning it. I was wondering why people were talking about spoons in this thread
Hugs to you too Did you see my post about the expert patient programme?
Just having a read of it now. I've just rang my MS nurse and see if she advises anything and I'll go from there. I'd like to stop crying over stupid little things like Dr Who and the bloody Clangers, it's getting a bit silly now
Just having a read of it now. I've just rang my MS nurse and see if she advises anything and I'll go from there. I'd like to stop crying over stupid little things like Dr Who and the bloody Clangers, it's getting a bit silly now
Don't be daft, if you need a good cry have one, its free for a start
Well, I'm the wrong person to ask as I'm just having enough trouble coming to terms with my diagnosis of MS as well as a previous diagnosis of Fibromyalgia and the odd bout of sciatica.
Aww I'm so sorry to hear this kupo_nut. Things have just got worse and worse for you
Gentle hugs and lots of love and if you want to talk at any time, please give me a nod
I'd never heard of that site, thank you for mentioning it. I was wondering why people were talking about spoons in this thread
Hugs to you too Did you see my post about the expert patient programme?
we forget some people may not have heard of the spoon theory! lol we call ourselves spoonies! You may have seen some people on FB or twitter with a little spoon icon on their profile picture. If you see one of those you know they have a chronic illness. I use 'spoons' in my vocab all the time it works so well to describe what I am feeling.
For those who don't know what the hell I am talking about: spoon theory
Just having a read of it now. I've just rang my MS nurse and see if she advises anything and I'll go from there. I'd like to stop crying over stupid little things like Dr Who and the bloody Clangers, it's getting a bit silly now
Hey, I try my best to be positive but I still cry over stupid things, even adverts! lol
Deffo need some spoons at the moment, pity we can't store then up really and use them another day.
we forget some people may not have heard of the spoon theory! lol we call ourselves spoonies! You may have seen some people on FB or twitter with a little spoon icon on their profile picture. If you see one of those you know they have a chronic illness. I use 'spoons' in my vocab all the time it works so well to describe what I am feeling.
For those who don't know what the hell I am talking about: spoon theory
Oh.My.God I hadn't heard of this before! :eek:
It's totally brilliant. It describes my day (every day) to a T. It encapsulates every feeling and emotion perfectly. I can't wait to show this to my husband, my father and my son. Thank you so much Ruby Shoes {{{{{ HUGS }}}}}
It's totally brilliant. It describes my day (every day) to a T. It encapsulates every feeling and emotion perfectly. I can't wait to show this to my husband, my father and my son. Thank you so much Ruby Shoes {{{{{ HUGS }}}}}
Welcome to the spoonie club xxx
Oh, have a look at the notes section on my FB. I've written some small articles on living with chronic illness. Maybe this is something you could do? x
Comments
As for some of you not being able to get DLA with your conditions I think it`s disgusting and hope that when they overhaul the system. you get all the benefits you need to make life a little more bearable. Hard enough to cope with the illnesses without having to suffer financially too
From reading your posts it sounds like you have a great support network, I get emails from a lot of people who have chronic illnesses who get no support because they look ok. I put on my FB status today that I was aching all over and my glands were up and my sis commented that she had flu too, I had to make the comment that no, it wasn't flu just a worse day than usual. Also when I have said that having ME/Fibro is like having flu every day one of my brst friends said I should be able to cope with it better than other people who have flu because I'm used to it!! Most people when they have flu take to their beds and write 'I'm dying' statuses. Well to a lessor or larger extent that's how we always feel but we have to function because there isn't an end in sight.
On another note, the poster who said you were good at writing might be onto something there, why not try your hand at writing something? You could start by writing a blog maybe? I'm sure we'd all sign up for it. There are plenty of specialist magazines too who may not pay you for an article but will be more willing to accept it than a more mainstream one, my point being getting a few things accepted quickly will give you more confidence.
A couple of people have suggested I turn my blog into a book but I can't do that as well as GlamSticks, I'm not superhuman, but maybe you could write a book based on your experiences of illness?
Anyway, I'm off now to retreat into a painkiller induced stupor (I have a friend visiting later and determined not to cancel!)
((hugs))
Ruby Shoes you are such an inspiration the Glamsticks are fabulous everyone on here is very positive I get down sometimes about it all but reading this thread makes me realise my problems pale in comparision thank you for sharing.
Arww thank you Richevilla, that's really nice of you to say so and thanks for your good wishes
Thank you Ruby Shoes. Your link was very helpful and reassuring and I hope the neurologist corroborates what the article says
I've found the 'but you don't look sick' site to be very helpful for people with invisible disabilities and their spoon theory is a good way of explaining how Fibro affects you day to day.
It's going to be a while before I start feeling positive, but good luck and gentle hugs to everyone who's been diagnosed with multiple conditions.
Hugs to you too
Just having a read of it now. I've just rang my MS nurse and see if she advises anything and I'll go from there. I'd like to stop crying over stupid little things like Dr Who and the bloody Clangers, it's getting a bit silly now
Aww I'm so sorry to hear this kupo_nut. Things have just got worse and worse for you
Gentle hugs and lots of love and if you want to talk at any time, please give me a nod
we forget some people may not have heard of the spoon theory! lol we call ourselves spoonies! You may have seen some people on FB or twitter with a little spoon icon on their profile picture. If you see one of those you know they have a chronic illness. I use 'spoons' in my vocab all the time it works so well to describe what I am feeling.
For those who don't know what the hell I am talking about: spoon theory
http://www.youtube.com/watch?v=v4uG2kSdd-4
Hey, I try my best to be positive but I still cry over stupid things, even adverts! lol
Deffo need some spoons at the moment, pity we can't store then up really and use them another day.
Oh.My.God I hadn't heard of this before! :eek:
It's totally brilliant. It describes my day (every day) to a T. It encapsulates every feeling and emotion perfectly. I can't wait to show this to my husband, my father and my son. Thank you so much Ruby Shoes {{{{{ HUGS }}}}}
Welcome to the spoonie club
Oh, have a look at the notes section on my FB. I've written some small articles on living with chronic illness. Maybe this is something you could do? x