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

When is going to get better ?#Depression

I’m tired of crying
I’m tired of being sad
I’m tired of not getting any better
I feel like people just had enough
I’m not getting better
People around me just leave .
This depression is making me less and less
I can’t do much .., barely surviving
I’m so lonely
I crave social interaction…
I’m just the shadow of who I was
I’m tired of needing help
I’m tired of not seeing any improvement
I’m scared I’m gonna lose my job
This life is not what I wanted
I do everything I’m supposed to
I take my meds . I try to reach out
But I’m not getting better
I’m so tired

31 people are talking about this

If Your Chronic Illness Is Making You Want to Give Up

Having a chronic illness can mean life can be rough. It means going to the store with only one sock on because you didn’t want to go through the pain to find the other one; or maybe your shirt is inside out, or you have two different shoes, or clothes that aren’t even yours. It means being only 39 years old, but stopping twice walking up one flight of stairs because you have to sit down and rest. It sometimes means crawling the rest of the way because your body is just not having it. Chronic illness means really having to take into consideration if the route you need to take is rough road, or smooth, because it can actually keep you from being able to handle the drive. It usually means having to disappoint someone because you just can’t force your body to do even one more little thing. It means having a son with compassion and an understanding far beyond his physical years because he’s seen his mother go through so much. Yes, it can mean the loss of innocence. The pain stalks me incessantly. I used to be able to prepare for events like the holidays, but that seems to have changed. We’re already a week into January, and I’m still feeling the pain of Christmas because taking a couple of days to recover in between things isn’t working anymore. I’m not recovering as quickly as I was just last year. It scares me, and makes me want to get bitter and depressed. I refuse. No matter what part of me wants to. So I keep going, trying to navigate a ridiculously complicated existence for someone who really doesn’t have much of a life. I spend most of my time trying to figure out how to pay bills (oh the fun,) and trying to will my body to let me do the next thing on my endless list. It’s endless because I’m lucky to get two fairly easy things done a day. For someone who had always planned on having a career, and spent most of their life being so busy there was only time for four hours of sleep, that’s frustrating. I write while I wait for my body to work, but sometimes brain fog gets in the way of that, too. My family tries to understand, and I try to remind myself how hard it is for people without my conditions to see why something as simple as going to the store is so hard. It’s hard because just getting dressed to go is exhausting. I have to rest in between getting ready and going. Then, depending on how much shopping, I may have to rest during the trip. Getting it all rung up and out to the car is another adventure. Then, I still have to get it out of the car into wherever it’s going and put it away. Healthy people basically see that as a trip to the grocery store. One activity. I have to look at it as potentially five separate actions because each one will force me to take some time in between. Usually, just going out in public means I’ll also have to deal with some sort of ignorance. My chronic pain can make it a toss up whether I can handle that ignorance with grace, or lash out, so I try to avoid going out when I feel like this. Instead, I write, or try to get interested in social media. In the last few months, I’ve discovered that the TikTok app can be a good distraction. People make super short videos about whatever they want. Some lip sync to songs, or sound bites from movies or TV shows, others use it as a platform for whatever cause they are promoting. There are many people with disabilities that make videos, too, so you can even find people with similar conditions. Distracting myself works for at least a while, but pain and the feelings of guilt for not being able to function how I need to always end up breaking through those distractions. I’d love to be able to have a normal, busy life. When I have too much time to think, I can get too “into my head,” and start making things even worse for myself. When you live like this, it’s easy to feel abandoned, forgotten, bitter, and angry. It’s also pretty easy to overanalyze things people say, and their behavior. There are times when I’ll spend a whole day stressing over something that happened, just to realize later that it didn’t really matter. Chronic illness makes it easy to be emotional, but that doesn’t mean we don’t have reason to be emotional. We just have to be careful that we’re not overreacting to situations because of what we’re personally going through, and only reacting to the actual situation itself. I try to go out of my way to pause and really think before reacting to things most of the time, but it doesn’t always work — and that’s OK. I shouldn’t be expected to always react perfectly, just like I shouldn’t expect my loved ones to always be perfectly understanding and compassionate. Remember, everyone has their own problems to deal with, not just us. We’re all human and trying to make the best life we can. What matters is that you keep going, and keep trying every day to do the best you can. I read something on social media today that I thought was perfect for those of us with chronic illnesses. It said you don’t always have to stay alive for yourself. You can choose any reason that is good enough for you in that moment. I love it because sometimes the only thing that keeps me going is my children. On days when the will to live for myself just isn’t there, they are on my mind. You can use whatever it takes to get through that moment, day, or even month. If you’re feeling like no one gets it, or you just are too overwhelmed, remember that you aren’t alone. There is a whole community here you can come to for support. Keep doing whatever you need to handle the symptoms of your conditions. Don’t let anyone make you feel like you shouldn’t be taking care of yourself. We have to take care of ourselves, or wind up even worse. Don’t feel guilty for doing what you need to. Try to live, and not just survive. Keep going even on days you don’t want to.