mamas-still-doing-it-all:

Fear: this is a big one. It is easy to be afraid when you are sick, and as spoonies we are always sick, but then the other stuff starts to add up quick, turning into a deep downward spiral of doom

Loneliness: Spoonies are often left out of invitations or can’t go even if they are invited. Friends ignore calls, until they have time to deal with their “sick” friend. Quite frankly, able bodied people don’t have time for spoonies so we are lonely. Spoonies get left out of a lot.

Sad: this one is easy. Feelings of sadness come for all kinds of reasons as a spoonie. It’s sad being a spoonie and watching the world go by as if it were a television show and we are just watching it.

Anger: this is a big one. It’s easy to be angry for being a spoonie. Wondering why. WHY ME???

Self-Doubt: doubting yourself due to your disability

Feeling Inferior: always trying to overcompensate, prove that you are just as normal as everyone else.

Self-Pity: it’s easy to feel sorry for yourself as a spoonie, because you feel like everyone else does.

Mad at the world: this one is easy

Feel free to add any others that come To mind or things that you have felt.

chronicallyugh:

Doc: “What are your thoughts on losing some weight?”
Me: “Meh. It’s not a priority right now.”
Doc: “Maintaining a healthy weight is important for your long-term health.”
Me: “I’m sure it is. But when your house is burning down, you don’t waste energy on rearranging the furniture.”

Not sure how long this particular doc is gonna last.

thunderlullabye:

• It’s so hard. Damn, girl, it must be so difficult trying to coordinate 5+ different doctors’ appointments with a full-time job. Do you have benefits? Do you get paid sick days or time off? That sucks that you have to leave work unpaid just to be able to take care of your health, and that it consumes entire days.
  
• You relocated to a new city and have to find an entire new team of doctors? That must be frustrating and difficult, especially since the relationships you built with your former doctors were important. I know you don’t just rely on doctors for prescriptions but also for emotional support. You’ve had the same rheumatologist since Day 1 of the conversation about rheumatoid arthritis, and she’s been awesome with you every step of the way. It must be hard to have to say goodbye to someone you trust and appreciate as your doctor and start over from scratch with unfamiliar faces. Not only do you have to worry about whether these new doctors will even take your insurance… but will they know what they’re talking about? Will you trust them? Will they listen to you? Will you like them or will you dread these time-consuming, frequent visits even more than you already do, which shouldn’t be necessary?
• Hey, nobody really understands what you’re going through. People want to be there for you. (Do they?) 
• You’re so strong for handling all this!!!!! It can’t be easy. And it’s okay if you’re upset or frustrated or impatient or stressed or angry. You’re going through a lot, and these are normal feelings. It’s normal to feel frustrated since nobody will really understand unless they also have a chronic health condition. It’s normal to feel isolated because you’re 23 and sometimes feel like you’re 70 with all the doctor appointments you need to make, and meanwhile your 23 year old friends are drinking and partying next door without a worry. It’s normal to feel angry when doctors’ visits consume entire days of your week, because you’re ambitious and busy and have things to be doing other than sitting in offices waiting for another new stranger to bark at you about insurance policies. It’s normal to worry about romantic relationships, because who will want to have to deal with this crap and your days of feeling low when shit hits the fan?
• You’re a lioness. You handle all of these hurdles with such grace (at least 70% of the time). You work hard, bring light into a room, tear up a dance floor, and get shit done. On top of this shit!!!!!!
• It’s okay to be sad about it sometimes. You try so hard to stay strong.
• You’re strong!! You’re awesome!! You got this girl and I’m here for you if you ever want to talk or vent or have supportive company!!!! (omg can you imagine if people could be empathetic enough to say that to me)

youhavelupus:

I can’t move without something cracking or popping. I sound like a haunted old house.

thechronicchillpill:

Make sure your pride events are wheelchair accessible!

youhavelupus:

Doctor: Don’t do this. Don’t do that. Actually, don’t do anything. Don’t even leave my office. Stay completely still. Remain in that chair like a statue…but don’t forget: diet and exercise is KEY.

imtweeds:

One of the worst things you can tell someone with a chronic illness or chronic pain is “you’re going to have to deal with this for the rest of your life get used to the pain ”