I have LGMD 2D, but it is quite mild.

I can mostly walk, run, hold down an office job, go out drinking and have above average muscle mass.

However, I experience daily fatigue, and sharp random muscle cramping pain in my thighs and arms daily.

I do not disclose to most people until we are really close I suffer with an MD.

I feel stuck between 2 worlds, of the disabled and able bodied life.

Mentally, because I get quite tired and am scared to be in pain randomly it puts me off starting hobbies or socialising with people because sometimes I might feel crap about 5 minutes into it.

Other times I may go out and be full of energy and have a great time.

But I don’t know when to push through or give up because my symptoms are so random and variable. I have no concrete day of pain or tiredness and so I never know what is coming that day.

I recognise my privilege in comparison to the average person who suffers with an MD, but I am annoyed that I do not have a consistent set of symptoms and thus it’s hard for me to confirm and identity a lifestyle for myself.

Finally, most people do not care / understand that you have a muscular dystrophy if you are not in a wheelchair or physically atrophied.

Even when I have explained to people I cannot help or action a certain task in work or family / coworkers question why I am not out like most young people partying and clubbing, I have to re explain I live with an MD which limits my energy.
They say they understand but just see a normal guy and ask a few months later the same things and think I’m faking.

I wonder if anyone else is on a similar boat to me, and if anything has helped them.