Blogging against disablism day

[redtoffee]

Today is blogging against disablism day and given that I have Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) I know all about being disabled. Only my disability is invisible. Or at least it is most of the time. Those of use with ME know how to hide our disability as best we can until it reaches the point where we run out of energy

Comments

[morbid_sparks]

Thank you. That is a really, really good explanation of what ME is, how it affects different people in different ways, and why people should wake up and pay more attention to our condition.

Thank you for writing this.

[redtoffee]

It makes me unbelievably happy that you found that helpful! I hope some non ME people read it and maybe understand more too. I am going to try and edit it for the paper and see if they will print it in ME awareness week. I one person without ME sees it and changes their perspective, even a little bit, I will be happy!

Laura
~X~

the spoon theory

[anonymous]

Visit but u don't look sick if u haven't already. "the spoon theory" is an excellent way to explain to healthy people what challenges a chronically Ill person faces on a day to day basis. I've been diagnosed with RA for 10 yrs & have been majorly symptomatic for years - rarely in remission. Pain, discomfort ranges from what I can deal with to pain that leaves me screaming, locked in bed. some days I do want to die, some days are ok...I dispise my body, I hate the pills I take that make me sick. I love the man who sticks with me, but constantly worry that this disease will cause me to drive him away. Today I am fighting a migraine along with all the other bullshit, yeah. .... If I didn't wake up tomorrow that would be ok

Re: the spoon theory

[redtoffee]

I have actually read the spoon theory before and I feel it is excellent! I used the term sharing spoons with another friend of mine in the past, although she had mental health issues it was an easy way for one of us to say that we needing some extra help of we had run out of spoons and thus wasnt coping very well right then. She found the spoon theory a good way of understanding me actually!

Thanks for letting me know about it anyway, i shoudl really go visit the site again as i havent been on there in ages!

I really hope you start to feel at least a little better soon. I know steroids and methotrexate are nasty medications to take.

Laura
~X~

Thanks Laura

[anonymous]

It flopsy_bunny from AYME here.

How, hun! O_O It's a really good explanation! :) :D

xx

Re: Thanks Laura

[redtoffee]

Thank you so much, i am glad you found it useful!

Laura
~X~

WOW- Very Powerful & Moving

[cindigoesindigo]

You Expressed what it`s like to have an "Invisable" illness Beautifully. I don`t have ME and I have`nt been diagnosed with CFS yet although one of my many Dr`s thinks I have CFS too,Along with MS,Fibromyalgia & degenerative disc disease. MS & Fibromyalgia are both "Invisable Diseases" too. Friends,Family & Dr`s often make Rude Unhelpful,unkind comments about "us"(MS & or Fibro pats.)being "Lazy,drug seeking,Drunk,Liers,Ect" or say things like "You don`t look sick"??? Like we`re making it up, or "Well look at you,walking with a cane,not a walker or go cart in site"huh? I just wanted to email & Tell You Some od us do Understand & suffer as you do in some ways. And I wanted to Tell you How Wonderful Your Writings were & are! Your very brave,Very talented,caring & Kind! Please don`t lose your spark,It`s Fabulous!!!! Would you mind if I printed your "Writings"? If you say no,I`ll understand & respect your wishes.I would really like to talk more to you & possably become friends? If interested in either let me know on LJ in my private

Re: WOW- Very Powerful & Moving

[redtoffee]

I am so glad you found what I wrote helpful and I am sorry to hear that you have invisible illnesses and too have fought the stigma and pain that come with them.

I will never give in. I will always tell people the truth and do my best to educate them if they are willing, I have never seen any point in trying to hide what is wrong or lying.

Feel free to add me as an LJ friend! I look forward to getting to know you!

Laura
~X~

[annaham]

Amazing post; I have fibromyalgia myself, and can relate to much of what you've written (particularly the pain-related stuff), even though I don't fully know what CFS is like.

*claps*

[redtoffee]

Thank you very much I am glad you found it helpful, hope you are as well as possible!

Take care,

Laura
~X~