I've got M.E/C.F.S and I'm soon going on a trip which will involve a lot of walking so I have to use a wheel chair, which will be my first time... I'm really anxious to use one because I have severe anxiety and my friends will ask why I've got it and I haven't fully told them about my illness... Any tips on coping with anxiety about using a wheelchair or telling your friends how ill you are?
Anonymous

chronic-frustration-syndrome:

thefaultinourspoons:

The first time I used my wheelchair out in public with my friends it was when the Olympic torch came through our town. It was very last minute, so I didn’t really have any time to think about how it would affect me anxiety wise, mainly because my mum works 8-4, 5 days a week, and I had spent the last three months home alone, with my friends visiting me maybe once a month, so I was pretty excited because it was the first time I’d left the house for something that wasn’t medical. 

Because you know that you’re going on this trip you have a little time to prepare, you want to make sure that you take things with you that will calm you down if you start to have an attack while you’re on the trip. Unfortunately, because your friends don’t know about your illness, it’s inevitable that they’re going to ask about the chair. If you start to feel extremely anxious you need to remind yourself that there’s a reason that you have the wheelchair, that you need it to get around, because it stops you from having to walk long distances. You just need to keep reminding yourself. 

Friend wise I’m not going to be much help, my friends knew when I first fell sick, so it’s been over two and a half years since I told them. The good thing about being in the chair, or taking the chair with you when you’re telling them is that it will emphasise how ill you actually are, especially since M.E. is an invisible illness, the wheelchair is there to make it more visible. Maybe print a little bit of information off the web, including the spoon theory, about M.E., so you don’t have to fully explain how M.E. affects you, you just have to tell them that you’re sick. Just remember that you’ll only have to tell them this once, so as soon as you’ve done it, it’s over and done with, and you’re friends will most likely be extremely understanding. 

I wish I could give you better advice for anxiety, but considering it’s taken me just short if a year to bring it up at a doctor’s appointment I’m probably not the best person to ask! 

I hope everything goes okay, and have fun on your trip, if anyone tries to be rude or mean to you just run over them with the chair ok?!

Also, if you have a little time before the trip try taking a few short trips out in the chair, perhaps where you know your friends aren’t going to be, just to get used to it. It took me a while to get used to using the chair and not be nervous.

Also, this may depend on your friends, but having the chair might actually make it easier to explain more fully about me/cfs and how it affects you because it gives you all a common starting point for that conversation.

I hope you enjoy your trip :)

(One more thing: it doesn’t always help to tell myself this but I’ve found that 99.99% of the time, the ‘what ifs’ I create in my head are MUCH worse than what actually happens.)

"oh my, you’re so right. i’ll just stop taking all of my medications, throw out all my gluten, and buy a yoga mat."
— said no sick person ever. (via ifihavethespoons)
I've got M.E/C.F.S and I'm soon going on a trip which will involve a lot of walking so I have to use a wheel chair, which will be my first time... I'm really anxious to use one because I have severe anxiety and my friends will ask why I've got it and I haven't fully told them about my illness... Any tips on coping with anxiety about using a wheelchair or telling your friends how ill you are?
Anonymous

The first time I used my wheelchair out in public with my friends it was when the Olympic torch came through our town. It was very last minute, so I didn’t really have any time to think about how it would affect me anxiety wise, mainly because my mum works 8-4, 5 days a week, and I had spent the last three months home alone, with my friends visiting me maybe once a month, so I was pretty excited because it was the first time I’d left the house for something that wasn’t medical. 

Because you know that you’re going on this trip you have a little time to prepare, you want to make sure that you take things with you that will calm you down if you start to have an attack while you’re on the trip. Unfortunately, because your friends don’t know about your illness, it’s inevitable that they’re going to ask about the chair. If you start to feel extremely anxious you need to remind yourself that there’s a reason that you have the wheelchair, that you need it to get around, because it stops you from having to walk long distances. You just need to keep reminding yourself. 

Friend wise I’m not going to be much help, my friends knew when I first fell sick, so it’s been over two and a half years since I told them. The good thing about being in the chair, or taking the chair with you when you’re telling them is that it will emphasise how ill you actually are, especially since M.E. is an invisible illness, the wheelchair is there to make it more visible. Maybe print a little bit of information off the web, including the spoon theory, about M.E., so you don’t have to fully explain how M.E. affects you, you just have to tell them that you’re sick. Just remember that you’ll only have to tell them this once, so as soon as you’ve done it, it’s over and done with, and you’re friends will most likely be extremely understanding. 

I wish I could give you better advice for anxiety, but considering it’s taken me just short if a year to bring it up at a doctor’s appointment I’m probably not the best person to ask! 

I hope everything goes okay, and have fun on your trip, if anyone tries to be rude or mean to you just run over them with the chair ok?!

Day 33

abnorm-ali-ty:

Going to use all of my spoons on cleaning today. :D And I slept for 12 hours last night - it was lovely.

3 days until my next doc appointment. Maybe a diagnosis? Please, Lord.

100 Happy Days: day fifty eight

After acupuncture my mum took me to KFC to get a Krushem’s, they didn’t sell them at the one we went to, but it was a nice thought!

tomorrowsabetteryesterday:

checkthyselffoo:

Spoonie problems: finding a bag to fit all of your medicine.

Target has wonderful sturdy, roomy leather cross body purses (perfect for the spoonies which brain fog that have left their purses in stores before)

DAY 32

abnorm-ali-ty:

I fixed my Mac’s ticking noise. Apparently there was cat hair stuck inside. Now to wait and see if I fixed the fan problem too. :D

quietdharma:

From the “spoon shortage” facebook page

quietdharma:

From the “spoon shortage” facebook page

writersinkorporated:

A friend of mine shared this on Facebook so I thought I’d share with you.

writersinkorporated:

A friend of mine shared this on Facebook so I thought I’d share with you.

Day 31

abnorm-ali-ty:

I went to orientation for my new university today. It was ok, I guess.
But idk… I just haven’t been that happy today, to be honest.

The put me in a Freshman dorm; I’m not a Freshman! I was supposed to get a pod-style dorm, but that didn’t happen… Anyway, I kinda expressed my disappointment that I didn’t get into the upperclassman dorm for those with good GPAs, considering I have a 3.6 or higher, and they found me a new dorm that wasn’t with Freshman only, but still…

On the plus side, my new room is ADA regulated, so nice and spacious, with it’s own bathroom. The shower has a small lip, so not too bad for getting in, and it has a built in shower chair.

Is anyone else sick of hearing the following statements?

thatpainlife:

"It’s your pillow."
"You don’t eat breakfast."
"You don’t drink enough water."
"You’re stressed."
"It’s because you eat cheese."
"There’s nothing wrong with you."
"You don’t get enough sleep."
"Maybe if you exercised."
"You need to get out more."
"It’s because you’re in bed all day."
"You seem fine."
"Stop drinking coffee."
"If you put makeup on and dressed nicer, you’d feel better."
"My friend gets migraines; Topamax helps her."
"You don’t need all this medication."

I need a break. I use all my energy fighting this condition, but for what, it doesn’t ease, there is no end in ‘chronic’.
So I want to make a ‘Spoonie Friendly Jobs’ Masterpost

allthebothersigive:

keepcalmandpsychoanalyze:

thefaultinourspoons:

a lot of people get messages asking about jobs, so I want to make a master post about how spoonie friendly jobs are:

green for super spoonie friendly

amber for kind of spoonie friendly

red for not at all spoonie friendly 

Please spread this post and message me with jobs that you do, or just reply/answer this post. I appreciate the help

This is awesome :)

HOLY CRAP SIGNAL BOOSTING THIS.

I’m scared to move to a new state because what if I never find bosses as nice and understanding as the ones I have now.

The non-profit organizations are probably green, but it can depend what position you have and what your responsibilities are.
Anonymous

thank you : )

summer=naps in the garden