Reblogged from a flesh prison

chronicallyinvisible:

When you’re chronically ill what you want to do and what you should do very rarely coincide, and no chronically ill person should ever be made to feel guilty for choosing what they feel is best for their health, both mental and physical, at any given time.

Anonymous said: I feel so impossibly sad. Any advice?

rubyetc:

Keep going keep going keep going.

keep 

going. 

It will pass, it always does. Allow a nice thing in, or hang on until you think you might be able to. Until then let others hold you.  

Reblogged from

dontwaitfortheworldtogetbetter said: For some reason I'm awful with blood draws/ivs. I've found that listening to music while it happens helps me a lot, so I can concentrate on the music. I've only ever had one nurse say "no, it's quick. That won't help. That's stupid." Some people have no clue what makes others uncomfortable when most people can handle it. Anyway, that's my tip that helps.

Hrmmm to that nurse.  This is a great idea.

clatterbane:

charliexxx:

So. I had no idea about this app until I went into my doctor and he told me about it. 

LISTEN UP. THIS APP. THIS SHIT RIGHT HERE IS SERIOUSLY A BLESSING. ESPECIALLY TO ANYONE WITH FINANCIAL PROBLEMS (which is kind of everyone now). THIS IS NOT INSURANCE THOUGH. BUT IT WILL HELP YOU OUT. DOWNLOAD THIS APP RIGHT NOW. NO. STOP READING. DOWNLOAD IT

This app allows you to input the prescription you have, select your dose, and then find a place near you (or your own pharmacy) with the cheapest price. Then you click “get code/coupon/discount card,” show that to the pharmacist, and THERE YOU GO. SAVING YOU SOME CASH TO GET YOURSELF A WELL DESERVED DRINK, CANDY BAR, DATE MONEY, SEX TOY CASH, OR GO BUY YOURSELF A HAMSTER AND NAME HIM STARLORD WITH THE EXTRA MONEY

No, but in all seriousness. This app is saving my ass right now. 

I’m Trans* and have Fibromyalgia, and this is really making a difference already. I hope this helps out other people. We all know it fucking sucks to have to pay this much for the medication we need to function in life. 

This would also save lots and lots of voice calls, for people who have trouble with that. My mom was having to call around to try to compare, and also got brushed off with a lot of bad info about like you might expect. :/

Anonymous said: Also if you tell them you don't like needles they will help distract you by asking you random questions and stuff.

Yes, more help.  You guys are so fantastic!

Tags: Anonymous

Anonymous said: for the anon with trypanophobia: I have a minor fear of needles and whenever I have to get a blood test or IV what I do is look the other way and try and distract myself. While they don't like when you squeeze your fist on the arm that they are taking the blood out of it is helpful if you squeeze your other fist or maybe pinch your leg and try and distract yourself. I guess it depends on the severity of your fear but if you do need to get a blood test these tips make it a little bit easier. <3<3

Thank you! I was really hoping some people would respond with tips.

Tags: Anonymous

Anonymous said: Hi(anon with jointpains who needs to go to the doctor again), I have this weird problem. I've always tried to do as much as I can, even though I'm hurting all over Now that I explained my partner how it feels(with spoons), she seems to understand it more clearly - and wants to help. She carries heavy things, almost not letting me do so. I know she means good but somehow it makes me irritated. "I can do it!" even though I clearly can't without hurting myself. Is this a normal reaction?

Hells Yes this is a normal reaction.  It took me years to get over this.  I am still not over it.  I worked my butt off to become an independent person who didn’t have to rely on anyone. Then I got sick.  Now I am almost completely dependent on my parents for everything.  Even on the days when I can leave the house and go shopping with my mom.  I STILL walk around to the trunk to help carry stuff in.  EVERY TIME my mom says, “What do you think you are doing? Go in and sit down!”

And then I hover over her while she puts everything away because I feel guilty that I am not helping.

It is my personal opinion that it is because of how we are socially conditioned to believe that the only value we have as people is based on how productive we are.  This. Is. A. Lie.  You are valuable BECAUSE you are a person.  How much you can or cannot do has no relation to how important you are just for existing.  But I digress.

I really wanted answer with only a big YES.  But clearly I have issues speaking to anything briefly.  Hang in there.  When you feel that way remind yourself that it is frustrating that you need help.  Your partner knowing this about you is also upsetting.  We don’t like to appear vulnerable to others.  It sucks. You have a right to be irritated.

When you are ready to be OK with it you will be.  I do think you are spot on because you recognize that your partner is doing this because they care for you.  Your feelings are rooted in a much deeper grief process going on inside you.  You are experiencing loss.  It is a loss of independence and it hurts.  It is going to come out in different ways. Just be sure to point those emotions where they belong. At your illness.

In the meantime, thank your partner for being supportive so that she knows you are not irritated with her.  And tell her you are irritated with your illness.  Talk about what is going on, it will help keep that irritation from harming your relationship.

Tags: Anonymous

Anonymous said: Hi! I've been experiencing a lot of symptoms of fibromyalgia for a while (not to self-diagnose) and was wondering if you had any advice on the diagnosis process, especially tests. I have trypanophobia and I know I'll panic if a blood test is needed.

I have been diagnosed with Fibromyalgia myself.  I hesitate to answer this because I don’t know what your relationship with your doctor is.  Fibromyalgia is usually a diagnosis of exclusion.  This means they test for a lot of different things to rule them out before giving you the diagnosis.  HOWEVER, there is a very standard diagnostic test that is accepted by the medical community at large.  You can be tested for “tender points.”  You would normally need a referral to Rheumatology.  And you will probably need your doctor to fight for them to take you without the testing.

Given that it is a diagnosis of exclusion, it is going to be difficult to be diagnosed without blood tests.  Please remember though I am not a medical professional, I am just a spoonie who happened to go through this process. 

It is going to depend on what you need the diagnosis for.  If it is for personal assessment only, as long as your insurance is fine with any treatments they have to cover without your doctor running tests, you should be fine.  If it is in any way for the government you are going to probably need the tests to exclude other diagnosis.

I really wish I had a different answer for you.  Maybe some of our followers can add to this their experiences or opinions.

Tags: Anonymous

Anonymous said: I've been 'diagnosed'(They not sure yet, only all the sympthones are right)with IBS,and I read everywhere that it's a chronical illness and IBS-people who live with spoons. I feel horrible a lot of times, but I often have the feeling that saying I have IBS feels like lieing to myself, eventhough I'm almost 100% sure I have it. Whenever I read stuff from others I'm like: They have it so much more difficult than me.. While on bad days, I rather die than anything else. I'm in a fight with myself ..

I think this is a fairly universal response to being diagnosed with anything that does not have an actual test to be run.  I have two illness that are diagnosed by patient reported symptoms.  Back when I had really good days, I thought they must have been wrong.  I felt guilty for telling everyone about this because sometimes I felt absolutely horrible but other days I felt fine.  I was mostly worried that they wouldn’t believe me, which led me not to believe myself.

If you were not happy with your diagnosis and thought that it was something else, I would urge you to seek a second opinion to satisfy your own needs.  But it sounds to me like you identify with this diagnosis.  Unfortunately, a lot of the time that is all there is.  There are so many illnesses that don’t really have a test to confirm.  You are not alone in going through this.  You don’t ever have to be 100% sure.  So finding a way to be comfortable with not being sure might be a good start. And it is OK to tell people you aren’t sure or the doctors aren’t sure.  Whatever makes YOU feel better.

The absolute worst thing that can happen is you later find out you have something else.  Because the fact remains, you are sick.  There is something wrong or you wouldn’t have gone to the doctor in the first place.  So really, who cares what you call it, you are living with an illness and some days you will have to count your spoons while other days you won’t.

And never compare your illness to others in regards to who has it better or worse.  Someone else’s struggles do not negate your own illness.  And if anyone tries to tell you it does, give them our Tumblr address and I will personally explain to them why they are being a jackass.  My Chronic Fatigue Syndrome is so extreme that I spend 23 hours a day on bedrest.  But one of my best friends, who has the same diagnosis, experiences much less fatigue. Me being more sick, doesn’t actually make her less sick.

I guess what I am trying to say is it is you are welcome on Spoonie Island.  I don’t give a horses pattoot if you have IBS or an unknown illness.  You are sick and it is OK to be sick and not know why.  It is OK to say you have IBS and still look for different answers.  It is OK to identify as a Spoonie even if you aren’t sure what to call your illness.

Please be gentle with yourself as you work through this.  There is a lot of emotion attached to a diagnosis.  Even if you had a definitive answer, there would still be a lot to process.  Come back here if you need to talk some more. You are welcome and you do belong.

Tags: Anonymous