Muscular Dystrophy

Another morning waking up in debilitating pain forced to take pain meds if I want to walk today. I've been at this for so long I can't remember what a normal life looks like a day when I didn't have to take meds or be able to walk with out full leg braces. I'm 58 had seven spine fusions and at the beginning of the year diagnosed with a rare muscular dystrophy which is taking out all my muscle slowly. I write these posts because I have no one to talk to and unfortunately there is nobody on the muscular dystrophy forum and I am frustrated because there is no cure or even treatment to slow it down. I don't think it's all dismal I find happiness when I can and let my brain be distracted from the pain by healthy conversation or doing what I can do gardening with my mom.#Anxiety ##Chro nicpain#RareDisease #MuscularDystrophy #DegenerativeDiscDisease #BorderlinePersonalityDisorder #Disability #OCD #PeripheralNeuropathy #alldynia #hyperalsesia #MDD

Today I witnessed some kindnes9s I felt was worth sharing because if our leaders can't get along in this world it's up to us as human beings to take care of our neighbor who may be having a tough life. There is a couple in my small town that have to get recycling from public areas and the lady is in a wheelchair so he pushes her and they go to to the store or the gas station. So I have seen them around town and always wanted to stop and give them some cash but didn't know how the man would take it or it was too dangerous to stop when I see them on the highway. Today when I got gas they were there and he was rooting through to get recyclables so I walked over and gave him some cash, mind you they were not asking, and then I started to pump gas and I noticed two people go up to the same couple and also give them some cash. I felt that it was so great to see people caring and doing for each other.

After all we are all human I don't know there story but I obviously could see his struggle and hers I'm not in a wheelchair but I wear bilateral orthotic leg braces so she kinda smiled at me when I approached. I didn't give them much but that obviously wasn't the point it was just nice to see humanity taking care of humans, our society can be so brutal to leave people to need necessities they were both over 60 and there struggle is one of many in the rising cost of just to survive.#Anxiety #OCD #ChronicPain #MuscularDystrophy #DDD #MDD #RareDisease #Disabled #PeripheralNeuropathy #

I just can't seem to find people on this forum who have muscular dystrophy. There is a group with two members but no one has posted in a long time. I have a rare form but still does anyone have muscular dystrophy here? I just feel isolated and I am able to discuss mental health here and it's beneficial.#ObsessiveCompulsiveDisorder #MDD #MuscularDystrophy #lonely #DegenerativeDiscDisease #PeripheralNeuropathy #RareDisease #ChronicPain

#I'm not sure if this group has any people in it but my name is Tazman and I was diagnosed with late onset muscular dystrophy earlier this year. I've had over seven spinal surgeries and the symptoms are similar with muscle wasting and extreme pain so diagnosis took three years to separate the conditions.#MuscularDystrophy #ObsessiveCompulsiveDisorder #MajorDepressiveDisorder #ObsessiveCompulsiveDisorder

Every day is just another continuation of the pain from the day before. It comes like clockwork about twenty steps into my day the excruciating muscle and nerve pain from a genetic muscle disease. It wasn't enough all those surgeries on my spine the painful recovery and eventually wearing two full leg braces and a cane thought that after a decade I had paid my dues. I'm posting this because mental defeat is one of the main charestics of suicide in chronic pain patients cause let me be clear there are days you want to end it knowing that getting through this nightmare means death anyways because you'll be in pain for the rest of your life.

If anyone ever feels this way get help as soon as you can nothing unmanly about needing help with a game that has no rules. I use many healthy distractions like spending time with mom in the garden or listen to music or look at educational shows on Space Nova love it

Color is our best defense against fate and color comes in many forms Art, Music, and crafts. #OCD #MDD #DDD #ChronicPain #RareDisease #BPD #Anxiety #MuscularDystrophy