CMT

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

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

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

https : //www.hnf-cure.org/newsletter-cmt-update/ #CharcotMarieToothDisease #CMT #cronichillness #hnf4cmt #MovementisMedicine

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?

#CMT #CharcotMarieToothDisease #ChronicPain #ChronicIllness #tired #Fatigue #frustrated #Wheelchair

I am a college student and about a month ago I was told I need a series of surgeries. While I knew this was going to be in my future I never truly processed it. My last surgeries in 2016 did not turn out as planned. The doctor said I wouldn't need more than a fine-tuning surgery. But with nothing was improved with those surgeries in some ways I was worse off. I also feel like those surgeries in 2016 changed me as a person as well. I used to be so much happier and positive, and now it seems like so much effort.
There is no set date yet and I do not know the extent of the surgeries. But I am a freshman in college and I know that this will make me take at least a year off.
I have realized that this is why I do not make a lot of close friends. I haven't had people stick by my side through the surgeries. I have had 5 and all my friends continue on with their lives and forget about me. I am hoping that this time will be different. I have a boyfriend who said that he will be there for me throughout the whole thing. That gives me some hope. But since the last surgery, I try not to get my hopes up about the outcome because last time all that I was was disappointed, and I never want to feel that way again. I am still not mentally over what happened in 2016 and I don't know if I ever will be. Surgery scares me, but continuing school this way scares me more.
I am no longer enjoying school. I have missed so many classes because of the pain that I feel like I might not do well in some of my classes. I have had to start using a wheelchair someday because of the pain. But that was a struggle in itself. My campus as I found out, is not very accessible there are some buildings or elevators that I cannot get into. The entire campus is composed of many small and large hills and while I have arm strength I still was struggling. So I got an electric wheelchair which has helped; however, I am tired of being questioned about why I am not using it sometimes. All I want to do is be able to use it without being questioned or looked at because I have been afraid to use it for a few weeks because I get so stressed and have so much anxiety about being questioned. I have tried talking to people about why I don't use it somedays but do others and no one gets it.
I just needed to rant because it's been hard recently and I don't know what to do anymore. I feel like there is no reason to plan for my next semester because I probably won't be there but my parents are requiring me to.
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