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Holy **** I'm sick

Does it ever just hit you out of left field that feeling "oh **** I am actually way worse then I realized!" Like I know I have been sick and my abilities are limited. It just hits me at random times how bad it actually is.

So like today I had to do an assessment for my Physical therapist and for an upcoming appointment with a new Dr and say how well I was doing balance wise and ability wise. The answers were not great. Along with getting some positive test results back that my Dr got back and scheduled an appointment that night so somethings up...

Then I started thinking about if I could get a job cus my parents where joking about my dad working at the new hobby lobby that just opened and realized I physically couldn't handle working at all maybe 2 hours a week max. No job would hire me at that and I would require acomidations so no way am I qualified for anything. As a young adult you want to work and do things on your own and realizing you can't because your body limits you so much is frustrating.

None of this information is new to me on the contrary I have been dealing with the decline of my independence since I was 17 (3 years now). It just hits me at different times and I go "oh ****" when you go from working full time and graduating high-school to being in a wheelchair struggling to speak or do basic tasks and no one knows why. The grief of the life you lost just hits at random moments. Most days I am ok and try to stick to my homework of pt, ot, cognitive, and speech therapy and if I have the energy I work on my comics or art if I don't, I don't and I go rest. I forget how much I have lost and how bad my body is.

Even with the diagnosises I have done explain all my symptoms and what is going on. The continuation of decline is frustrating. The constant questioning of if today will actually be better then the last but telling myself that tomorrow might be.

But man are those "oh ****" moments hard.

#oh **** #tics #nurologicaldisorders #FunctionalNeurologicalDisorder #Tourettes #dyskinesia #Dystonia

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#oh no it’s back

TRIGGER SUICIDAL: Hi everyone, I am so sorry I’m writing this as I haven’t written in sometime, because I’ve been well, that being said I am now in so much pain and really need support from those who get the illness. I was diagnosed 21 years ago with bipolar and most of those years have been more hard than good. It’s been a couple of weeks I haven’t felt well and foresee myself crashing, I think I already am. So I have all the symptoms of depression spiraling out of control. My suicidal thoughts are consuming my thought process. I can’t tell my husband as I don’t want to burden him, I know if I die that would be the worse for him. But it’s now about me as with the illness I have a tremendous mount of guilt. I don’t/refuse to go to hospital, been hospitalized many times and it’s no fun. I am so sick of this illness, I think I don’t have any more fight in me.. I could go on but I think you get the gist.. Thanks for reading and understanding


Does anybody else who is hypermobile have chronic #OrthostaticHypotension ? (Not POTS, unless you have both.) #PosturalHypotension

I don't have a POTS diagnosis, just an OH one at the moment, and the closest thing I have to a well-established community is the POTS community. However, participating in a community that isn't technically what I'm diagnosed with always makes me feel like an outsider and I want to know if there is a "proper" community for those with OH or if there's even all that many people who are like me.

Being hypermobile, I feel like I'm *supposed* to have POTS because everything I see about #Hypermobility mentions POTS and never #oh and that just makes me feel more alone, so I'd love to know if I'm not.


Libre / Free

Even though French is not my first language, I like the French version better, but I also took the time to translate it (by meaning/intent, not literal) into English at the bottom.

J'aime la version française meilleur, mais j'ai le traduit en Anglais en bas de ce post.

Aussi, les gens qui parle Français, corrigez ma grammaire s'il vous plait. Français n'est pas mon langue maternelle; je sais qu'il y a les erreurs.

Si je pourrai, je serai libre.

Ma tête et mon cœur sont en guerre

Et n'est pas comme dans les livres;

Mon coeur n'a pas beaucoup d'espère. 

Mon coeur ne lui donne pas le sang

Donc ma tête ne lui donne pas les ordres.

Il danse de peur et n'est pas obéissant.

Elle s'évanouit parce que le désordre. 

Ce n'est pas ni la vie ni la mort.

Je suis dans le purgatoire.

J'attends pour le résultat en peur

Et déteste mon systèmes nerveux et circulatoire.

If I could be, I would be free.
My head and my heart are at war,
And not as it's been told before:
"Love versus Logicality".

My heart does not feed my head
So my head becomes absentee;
My heart beats in anxiety
And my head pretends that I'm dead.

I am neither living nor dead,
But waiting in Purgatory.
I detest their endless fury
And await the result in dread.

#OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #oh #POTS #Potsie #Dysautonomia #AutonomicDysfunction #cardiovascular #Syncope #RaynaudsPhenomenon #Fainting #Poetry #Poem #poems #poets

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#oh my!

I just list The Mighty! My screen is blank! I had no profile etc. ! I can only write! Help!

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#oh I need help

I don’t know what else I could possibly do I am burning from the inside out and my legs and feet are so swollen that I can’t fit into my shoes


#who remembers when Friday night's made you happy?

I've just heard an #Ian van dyk track that took me back to a time when Fridays were something you looked forward to (#oh my god am I really that old !!!!! "Took me back to a time!!!")

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#oh no they're almost here! the "happy time of the year?" Give me a break, I have never been one to enjoy the season, or the cold. wouldn't mind going somewhere, anyone else feel this way?


Getting some help at last..

Finally got a proper adjusted wheelchair after months of trying to get it covered, I filled in the request at the beginning of octobre 2018. And I got an approval for an electric system on this wheelchair!! !

I'm so thankful I've been locked up In my own home for months, I can't believe that just a year and a half ago I was still going to school (half days)

All this positivity came in a really bad pain week, I had such pain I thought I had another #ovarian #cyst , litteraly crawling over the floor deciding if I needed to call 911..

Thankfully It's a lot better now and my wheelchair is amazing!

Can't wait till they place the electrical system on my wheelchair and I can leave the house on my own!

I think that's a fair request as an 22 yr old..

#HEDS #POTS #oh #ACNES #Gastroparesis and #Epilepsy are all bitches!