07/10/2023
For my friends who suffer:
Hot tip, if you get into a committed relationship with someone that has chronic health issues please please please understand that, that person may not be able to do anything for themselves for weeks to months at a time and a large burden is going to fall on you. Take the time to make sure you're able to handle it before you commit.
My favorite quote from my doctor was, “it can’t really be that bad if you are still working and doing everything you do."
I told him, I didn’t know I had a choice. 🤷🏻♀️
Years in pain, tired and the many changes in me for no reason or apparent reason ... Hiding everything from someone else, pretending to be doing better than you are; until it no longer works. No matter how strong you want to be.
Then the moment comes when they tell you what you have ... You have mixed feelings: you might finally know what you have, but how do you deal with it?
Lack of encouragement, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand.
Then, the daily responses, "How did you get so fat/skinny?" “I have this great diet you can try, if you just go out and exercise."
That once beautiful hair of yours now thinning and falling out...
What happened to you??....
This is all true and that's why I'm sharing it!
Silent and invisible diseases do exist ...
When you have an invisible disease it is difficult to argue from your perspective.
Life takes a lot of turns !!!
Tired of being told:
* Did you go to the doctor?
* Have you tried this?
* Have you tried that?
* I don’t know what else we can do for you...
Yes! I tried and still try everything !!!
Doctors say this disease is forever. That I will not heal. However, I am not giving up, but I want to make others realize:
* A nap will not cure me
* I am not lazy, I take medication and it sometimes makes me sleepy.
* I am not angry, but sometimes cranky in pain.
* I struggle daily with discomfort, mobility problems, fatigue, and the criticism of my environment.
Most frustratingly, people look at me and say, "It can't be that bad; you look good!"
Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good, it is an "invisible" disease.
This disease affects me physically, mentally and emotionally. Because rare autoimmune diseases cannot be seen, but we feel them.
And they are there ... Silent attack but extra painful.
I AM LOOKING AT THOSE WHO TAKE TIME TO READ THIS POST TO THE END.
Please, for me and in honor of someone who fights against:
- Chiari Malformation
- Idiopathic intracranial hypertension
-Lupus
-MS
-Crohn’s Disease
-Ménière’s Disease
-Addisons Disease
-Hashimotos Disease
-Graves Disease
-Antiphospholipid syndrome
-FND
-Depression
-Anxiety
-Sarcoid
-Autoimmune disease
-Polymyalgia rheumatica
-Sjogrens syndrome
-Polycystic o***y syndrome.
-Rheumatoid arthritis.
-Chronic pain
-Endometriosis.
-Multiple sclerosis.
-Myasthenia gravis.
-Pulmonary hypertension.
-Chronic fatigue syndrome.
-Diabetes
-Fibromyalgia.
-Degenerative Disk Disease
-Raynaud and Scleroderma.
-Neuralgia of the Trigeminal
-Epilepsy
-Cancer
-Hypothyroidism
-Arachnoiditis
-NEAD
-Vasculitis
-Alpha 1 Antitrypsin Deficiency
-CRPS/RSD
And some other diseases you can't see.
I would like 5 of my friends to post (not share) this message to show that you are always there when that someone needs to talk.
In support of a friend, a family member who is fighting for this disease. Just say “done” 💖💖💖
