A neck brace at 26 years old.
Updated: Aug 16
On the new form or medicine my doctor recently prescribed while refusing to up the dosage and I have never felt so bone tired and exhausted with my life and all my worsening pain.
It is SO much work just to convince myself to keep eating when I have to swallow so many times in a 4 hours span until the food at last rests in my stomach. Waking up vomiting is a weekly thing and NOT something I have come to be okay with though I am so use to it now with my many top blankets I keep at the ready for endless spills and messes my near useless hands create while eating the few meals I wake up late for.
Only but the very barest feeling in my thumbs and that is it. You don't realize how much you count on touch to help you hold things or manipulate utensils or pens until you have none left. It is like working with weird stubs and it is a LOT of guess work and practice that goes into the seemingly simplest thing of holding a utensil.
Because of my constant joint dislocations-worse now that I am not on the pain medicine that really helped me- I am now even extending my brace collection to include a neck brace. My neck dislocates so much while I sleep that it is become more of a literal pain than I can easily handle.
YES. At 26 I am having to use a neck brace and hand braces and other seemingly elderly invalid things just to do the simplest thing of living.
It hurts my heart that I am going to be turning 27 and this is the life I lead.
What keeps me going is the many who I can reach and help along the path of losing limb use or feeling and all the other issues I have. My pain and struggle and suffering can become for their good.
Blisters covering my scalp are getting an itty bitty bitty bit better with many different techniques I have devised.
But the most worsening and terrifying thing is my memory. It is getting so much worse. It takes me 10 tried and 3 hours for me to finally remember to take my medicine before bed because I forget and it becomes so very hard to grab hold of that thought that I struggle for 20min. trying to search my foggy and getting worse brain. Forgetting my own name is the least of my problems.
I have TONS of notes and sticky notes and reminders but still my family has to remind me of something 30 times at least before the time has past and reminders are too late.
Trying to remember if I have eaten or what I ate or what I did or what I didn't do is so ridiculous especially if you knew me when my brain fog hadn't gotten to me yet.
"Oh bother" I whisper with tears dripping down my face.
#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #MightyTogether #PosturalOrthostaticTachycardiaSyndrome #RareDisease #SuicidalThoughts #MentalHealth #CheerMeOn