So I've finally gotten a good gp, they listen and they believe CMT could be a real possibility. I also have EDS and my mobility is really effected. I use a wheelchair outside and a stick inside, now going to a crutch. I just want to know if it's CMT. I have so many symptoms and they are getting worse while many scratch their heads. I've been told by a neurologist is not MS but your reflexes are bad, drop foot, weakness, feeling like water is trickling down my legs and hands, pain and cramps and tremors. I love art but my hands are getting worse. I just needed to vent really. I hope they work it out but I know at 26 my life mobility wise isn't getting better and won't, whether it's CMT & EDS or just EDS... #EDS #CharcotMarieToothDisease #CMT #MOBILITYISSUE #Wheelchair #WheelchairUser #tired
I’m just struggling today. Been feeling low all day, it’s been so hard to even move. I’m so mentally and physically exhausted. I’ve slept on and off all day again for the third day in a row. It’s just too much to do anything. I feel like I’m always being negative when I post here, but I don’t have a lot of support. I’m counting down the days until my next therapy appointment in ten days! #Depression #Anxiety #PTSD #CPTSD #BPD #CMT #CharcotMarieToothDisease #CheckInWithMe
It’s been a rough couple days to put it mildly. I could not sleep Christmas Eve night and then at 4 am Christmas morning I was at the ER with my 12 year old daughter. It ended up she had appendicitis and had to be transferred to the children’s hospital an hour away. I was with her alone due to COVID restrictions at the first hospital. I of course didn’t sleep all day at the hospital either and we were released to go home at around 8 and got home around nine. My older kids dropped by to drop off gifts and see their sister. I finally got a shower and got to bed. Today I have been both physically and emotionally exhausted. I’m fear of breaking down in public I was stuffing and avoiding emotions all day yesterday. Plus it wasn’t about me it was about my sick girl! With having been struggling mentally for months and my physical disability I couldn’t do anything today but sleep on and off. I’m still exhausted even after sleeping so much. My husband got sarcastic and said “Thanks for all your help today!” My kids kept saying “Get up all you do is sleep!” I’ve gotten up to help my daughter to the bathroom and get a few things for her is all I’ve really done. Those words hurt! I know what I go through is hard for them too but I hear this stuff all the time. I’m still emotion stuffing and avoiding because I’m afraid if I acknowledge my pain I’ll spiral. My therapist is on vacation until the 6th and I don’t have a lot of understanding support elsewhere. I wish people knew I really wish I wasn’t the way I am and I’m trying my best. #Depression #Anxiety #PTSD #CMT
April 17 @7pmEST
How it works:
Introduce us to your furry, feathered & four-footed family members! Join us on video for a fun meet & greet ZOOOM-a-thon. We’ll be sharing tips, tricks and favorite pet products.
Once you’ve registered, be on the look-out for a confirmation email with your Zoom link.
Register today: www.hnf-cure.org/zooom-a-thon
*Special prize for the best dressed pet!
#CMT #CharcotMarieToothDisease #RareDiseases #hnf4cmt #cmtwegotthis
Friends and CMT advocates, Lainie Ishbia from Trend-Able.com, and Estela Lugo from the Hereditary Neuropathy Foundation, are real, raw and perfectly imperfect in their informal discussions about the trials and tribulations of living with disabilities.
Both women wear leg braces due to chronic neuromuscular conditions and are passionate about helping others feel confident in their own skin.
Listen https : //www.hnf-cure.org/podcasts/ #Charcotmarietooth #CMT #disabilty #ChronicIllness
I am struggling today. Physically, i am doing pretty well. My psoriasis is doing fantastic on my new biologic. Mentally though...I just want to scream. I no longer work and I have not filed for disability. I am caught somewhere in between. I am no longer a dependable employee, I have several chronic conditions each one causing fatigue and some level of physical pain and I can still get up and do things 50-75% of the time. Shouldn’t I be able to work? My family encouraged me to file for disability and then when I stopped trying to work they were irritated (at least) when I was not at their beckon call to do physical work 8-10 hours a day. I need emotional support. I feel like i am never enough! For me, for my husband, for my extended family. #CharcotMarieToothDisease #HugsNeeded #Depression
Today's been rough... I didn't sleep well last night because of pain so not only am I having a hard time getting around I also can't stay focused and study for an exam I have this week. All of my friends went to Hershey Park today and I didn't know about it until I saw them posting pics and videos on SnapChat. I feel bummed and left out... #ChronicIllness #ChronicPain #Sleep #tired #Lonliness #leftout #CMT #CharcotMarieToothDisease
I'm frustrated about the inaccessibility at my university. This school has a building with no ramp to get inside or elevator once inside. In a different building, my electric wheelchair does not fit in the elevator so I am forced to leave it downstairs and make my way upstairs to my class. My electric wheelchair is not big at all and should have no problems fitting inside normally sized elevators, but this one is small an narrow. It gets annoying on days that I need my wheelchair for the entire day rather than just distances.
Does anyone else have similar experiences?