Charcot-Marie-Tooth Disease

Join the Conversation on
Charcot-Marie-Tooth Disease
2.1K people
0 stories
351 posts
  • About Charcot-Marie-Tooth Disease
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Charcot-Marie-Tooth Disease
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Jill Price

    Why I Have a Love/Hate Relationship With My Mobility Devices

    “Ooh! Your cane is so pretty and shiny!”  How I wish I could see the beauty in the golden cane I have been using. I wish I could see how the sunlight shines off of it. Instead, I see a plain old boring cane that someone older than me should be using. I have Charcot Marie Tooth 1A, wear ankle foot orthosis, and now use a cane. The cane use started when I transitioned to new hinges braces and was tripping more than I care to admit.  My knees had cuts and bruises on them, so I had to do something. I knew I could not keep hurting my knees that way.  That is when I decided to talk to my orthotist. Together we decided to keep trying and working with hinged braces and I should use my cane more.  I was already using it for walking long distances and/or on uneven terrain.  Yet, the idea of using it more was a bit… well, unsettling. I can not fully explain why using my cane more was unsettling.  It helps with balance and provides support while walking, so logically it is a good idea. Getting my emotions on board with logic took a bit of convincing.  I started to use the cane more and I tripped less, coincidence? Maybe using the cane was not the worst idea. Maybe I was worried about what others would think. Maybe they think I am too young or that I really do not need it. To be honest, no one says anything to me about the cane. They may ask why I wear AFOs but nothing negative is usually said about either. Now that I am getting comfortable using my cane, I am starting to use a mobility scooter when I know there is a lot of walking.  This is much harder for me to accept and use. Part of me hates that my condition is causing me to need to use mobility devices. I know it makes doing things easier, but won’t everyone look at me and stare?  Well, not really. I found that when I use the scooter, no one really says anything or even pays attention to the fact that I am using it.  Hmm… maybe it is just me.  Perhaps I need to get out of my head and just do what is best for me. I know that the cane and scooter help me. They make it easier to do the things I enjoy. The mobility aids prevent me from falling and becoming exhausted.  So, why do I have such a hard time accepting that I need them and they make life easier? I am always wondering what strangers may think of me.  I know that most of the time they are not thinking, “Look at that lady on the scooter, I wonder what is wrong with her?”  I realize it is just me thinking that way. I do not think that when I see someone using a mobility device.  Why do I worry about what others think? The other day, I went to the grocery store and used their scooter.  It was so much easier to do the shopping and keep up with my teenager.  I remember thinking, “why haven’t I done this before?”  I had no real clear answer other than that I am worried about what others will say. Yes, I realize that is not a good reason and I need to just do it. I know the benefits of using these aids. I need to now get past my own insecurities and just do it.  That is the tough part for me. It is definitely a work in progress. I need to love the devices for how they help me get out and live without hating that I need them.

    Community Voices
    Community Voices
    Community Voices
    Community Voices

    Food for thought

    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

    4 people are talking about this
    Community Voices

    Constant suffering with no answers #CharcotMarieToothDisease #ChronicPain

    This is my first post. My job is getting sick of me not being able to work. Without my job I lose healthcare to treat whatever this is causing my body to shut down. My fiance is sick of me being negative and has thoughts of leaving me. I understand why he would. I don't even want to be with me anymore. My body is attacking every bit of it piece by piece. Numbness in leg and foot is how it started 6 months ago. Then lower back pain that shot from my bottom pelvis to my keck. Found out its 2 herniated disc's abs spine degenerative plus blocked nerve pathways. Broke both my feet falling a month ago. What should've been a sprain turned out to be both ankles and the bone on the outside of my foot. Had 12 out of 100 vitamin D levels. Blood work is positive for autoimmune deficiency but no one can figure out what kind. I'm seeing a neurologist, cardiologist, orthopedic, and spinal doctor. My ortho suspects Charcot-Marie-Tooth but i can't find a neuromuscular doctor with availability. I just had a steroid injection on my lower spine to heal my herniated disc. But after the fetnyl wore off I'm back in the same pain. Unable to sleep, barely able to work and can't stay positive to keep my family happy I feel like my body is slowly dying and I should be in a nursing home. I'm 44 years old. Yes I spent 15 years working in restaurants trying to raise my kids on my own. Dealing with 12 hour shifts hard labor and now I'm paying the price. I can't seem to get my fiance to understand how hard this is to cope with. And just faking a smile feels impossible.

    4 people are talking about this
    Community Voices
    Community Voices

    I have so much trouble with boundaries and people pleasing. I offered to cover a shift tonight for a coworker, three weeks ago. My memory is terrible too and I did so without thinking I work first shift tomorrow. So I’m scheduled to work 16 hours from 11 pm tonight until 3 pm tomorrow afternoon. Now I’m struggling with my depression and I’m in terrible physical pain due to my CMT. All day I have considered calling in and I haven’t because I feel like I have no right to since I got myself into this mess, even if I had no idea I’d be doing poorly today. I tend to never tell people my limits because I don’t want them to think I’m weak or because I feel like I’ll upset them. I don’t believe my problems are any worse than anyone else’s, actually if anything I tend to minimize my own problems. I can’t stand the thought of anyone being angry or upset with me even if it means I suffer in the end. I know what my limits are and they are much lower than many peoples but I push myself until I break to please others. So here I am doing that again. My anxiety over making others angry with me has caused me to procrastinate and it’s now too late to call in and now my anxiety over breaking down at work is taking over. My thoughts are going down a dark path. I hate who I am! #CheckInWithMe #MajorDepression #Anxiety #ChronicPain #boundaries #SuicidalThoughts

    1 person is talking about this
    Community Voices

    I came here because I know people understand. I’m at work, working a double shift. I started out having a great day then the heaviness and anxiety set in, followed by intrusive thoughts. Now I’m in physical pain on top of that. I keep smiling and acting like I’m fine to my co-worker and clients and I’m not fine at all. I’m tired of feeling terrible so often, I’m tired of thinking I’m a downer, a burden. I’m tired of faking ok. #CheckInWithMe

    3 people are talking about this
    Community Voices

    What do you do when you feel like the only person to understand and support you is your therapist? I have parents who love me but are elderly and my mom has early signs of dementia. I have three siblings who tell me mental illness is uncomfortable to talk about and that is why they don’t reply when I reach out. I separated from my husband in May, he told me the day after coming home from a ten day psych hospital stay that I wasn’t “keeping my promises” about doing better. I have seven children, three of whom are adults, two of them stopped speaking to me saying I’m faking for attention. One I’m currently staying with and she understands some yet I don’t want to be her burden. I have three close friends, one whom I cannot easily contact. The other two tend to panic or try to “fix” things, I know their intentions are good and it also isn’t helpful. Then again who wants to hear about my latest breakdown? I feel like a burden because I’m in crisis or struggling so often. I’ve spent the past two days in bed. I didn’t eat until about an hour ago and have been crying non stop for almost the same amount of time. I feel so alone. I’ve emailed my therapist twice today, twice yesterday. He allows that and understands sometimes it’s just to vent as he knows my support circle is small. How do you talk to friends and family? How do you open up to them when you are struggling, especially when to them it’s probably like “Here we go again!”! I hate mental illness! Right now I hate myself too! I hate being so needy and sensitive, so emotional! Just how many times can one person cry on someone’s shoulder before it gets old? I text the crisis text line a lot, I feel like too much. Someone else may need the time I’m taking up. Yet in those moments I truly and overwhelmed and lonely and scared and in pain. I’m always in pain. I had been hoarding pills I don’t take anymore, a backup plan if you will a plan with no specific timing. I told my therapist yesterday as I felt guilty about it, I promised to get rid of at least one bottle of pills. They’re still sitting there on my table at the end of my bed. I couldn’t get out of my bed much less leave the apartment. Now they’re taunting me. Tomorrow’s my daughter’s 15th birthday, I can’t do that to her. I ruined it last year by being on the psych floor and coming home that day. I don’t really want to die, I just don’t want to keep going like this. I don’t want to keep either feeling like a burden or struggling alone. I’m tired of hurting. I’m tired of struggling and I’m tired of feeling so alone and desperate. #MajorDepressiveDisorder #Depression #Anxiety #CPTSD #Trauma #Lonliness #nooneunderstands #emotionalpain #SuicidalThoughts #Burden #struggle #tired #CharcotMarieToothDisease #IrritableBowelSyndromeIBS

    3 people are talking about this