Sharing Spoons

So many symptoms, so many diagnoses... Sharing information that helped me in my search for answers. #chronically awesome #fibromyalgia #hashimoto's #chronic pain #chronic fatigue #chronic myofascial pain #brain fog #anxiety #adhd #adhd/add #autism #invisible illness #chronic illness #spoonie #disability

[fleurserenity]

I didn't know I was autistic, but I reached a point where I could no longer do the masking I really didn't realize I was doing. I was as always a highly sensitive person but now it's crazy.

Still not diagnosed as autistic. Going out is torture.

Anyone else?

‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

Autistic women often struggle with the onset of menstruation, a key transition point in the female reproductive lifespan. Presently, there i

[fleurserenity]

Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.

I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.

I'm so sneaky--I don't always show up in your blood work.

Others around you can't see me or hear me, but YOUR body feels me.

I can attack you anywhere and any way I please.

I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?

I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too.

I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.

Some of my other autoimmune disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:

That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.

I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.

Can't get pregnant, or have had a miscarriage?

That's probably me too.

Shortness of breath or "air hunger?" Yep, probably me.

Liver enzymes elevated? Yep, probably me.

Teeth and gum problems? TMJ?

Hives? Yep, probably me.

I told you the list was endless.

You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.

They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.....Not what works for someone else.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

I am Hashimoto's Disease.

[fleurserenity]

Watch "Fibromyalgia and Hashimoto's - Dr. Martin Rutherford" on YouTube

Fibromyalgia and Hashimoto's - Dr. Martin Rutherford

http://powerhealthtalk.comSchedule a consultation with Dr. Rutherford http://powerhealthconsult.comIn the many years we have been working wi

[bookgeekconfessions]

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Keep reading

[-from-zero-to-hero-]

[fleurserenity]

My hope has been wavering quite a bit lately. The home I struggled for 5 years to keep and make ergonomically friendly, will be gone on August 6th. It shouldn’t be this hard to find companies to do business with and housemates to live with that don’t take every damn spoon you have for a day This poem revived a little of the hope...

Thanks, Lydia!

http://www.pedalandplow.com/2015/07/11/the-gates-of-hope/

[fleurserenity]

[fleurserenity]

Thank you, Princess in the Tower! 

http://princessinthetower.org/the-spoon-theory/

[fleurserenity]

Nuf said :-)

[fleurserenity]

This explains scarecrowism perfectly!

[fleurserenity]

My favorite Spoon Theory storyteller

[fleurserenity]

Finding my voice

[fleurserenity]

This is pretty much the way I feel every day. Like the Princess and the Pea character, things you would never dream of hurting, do. Can you imagine talking on the phone for 20 minutes with one of your very best friends causing your brain to say to you?

Hey, you used up your allotment of my resources for a while. I am extremely busy processing pain. You are going to have to figure out, how you are going to make this up to me.  I may do some problem solving for you later, but don't count on it. 

Ha, hence the Scarecrow, darn it. :-) As far as the Diva part… I have learned to set stricter boundaries, because even after coaching, some just don't get it. It still amazes me that some of my friends, family and housemates, who I know love me continue to:

demand interaction, I am unable to give

intrude without asking 

can’t seem to take polite hints that I need them to go home, please 

impose chaos in my little world of Tranquility House

Wouldn't you, be upset if someone just walked up to you and beat you up, after you had warned them of the serious consequences for you, that they would inflict, if they acted in such a manner? That is what it feels like.  

I want to help others with invisible illnesses to retain their quality of life for as long as possible. It shouldn't be this hard. 

Awareness just isn't happening fast enough. So many are hanging by a thread, so many have lost all they had, even their lives.

[fleurserenity]

Recovering Spoonie, still use the theory for education and for discussing energy but I felt the Spoonie lifestyle made life harder, for me.

Wow, all I could handle last year was a link. ;-)