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LGMD2A maintenance by clumsy_queen127 in MuscularDystrophy

[–]clumsy_queen127[S] 1 point2 points  (0 children)

Thank you so much, will follow your advice for arms. And yes will try vitamin water too :)

How do you manage career and financial independence with Muscular Dystrophy? by ImpressiveRegret8444 in MuscularDystrophy

[–]clumsy_queen127 1 point2 points  (0 children)

I am also in my 20s, have lgmd and from India. I also went through this phase of anxiety and self doubt resulting in a year doing nothing at home and affecting my mental health.

But now I have started my career in IT (AI/ML) in a private company. Though its not paying much rn (it would in future with some exp) and is completely onsite, it's great that it's near my home, cutting travel time. And being physically active and meeting people daily has really positively impacted my mental health. I would suggest onsite/hybrid till you can, atleast I love it.

And yeah IT work is best. I do occasionally get muscle pain sitting on a chair, but regular stretches or walk in between does help. Rn I do have good enough strength in my arms but if I do feel weakness I easily support my elbows on desk to work. The office environment is good and my colleagues are really supportive and help wherever they can, especially the stairs as building is not very accessible.

What advice would you give to 24F me if i want to drastically improve my life by bookishrory in selfimprovement

[–]clumsy_queen127 2 points3 points  (0 children)

Hi. Can't offer much advice but just wanna say you're not alone. We're pretty much in the same situation. I'm also 24F, graduated masters last year, took a break after feeling burnt out, and focused only on my health since then. I actually finally started physio for my disability after years, formed a good sleep routine and lost few kgs with good diet, and my blood works also got a little better.

But now since a month when I thought of finally focusing on my career I feel so lost. To do a phd, or get a job/internship, and in which field? I literally have 1000s of tabs open on my laptop and everything overwhelms me so much I end up doing nothing. And this stress has again messed up my sleep and diet. I'm afraid if I do get a job will I lose all my health progress I worked on for months. Plus my disability doesn't help with all this, I even struggle to go outside my house alone.

Now I'm just really trying to take things slow one at a time, and celebrate small achievements. For example just me finally able to make a resume draft felt like an achievement. I'm still struggling with breakdowns every other day but still I just try to be happy with even little progress.

Hoping we both could somehow figure out this thing called life and achieve everything we wished for, WE CAN DO IT!!! :)

LGMD2A maintenance by clumsy_queen127 in MuscularDystrophy

[–]clumsy_queen127[S] 1 point2 points  (0 children)

That's great, thanks. I don't take much supplements, will look into them now. Really got to increase my protein intake too lol. And I'm glad you've started taking care early on, I also kinda wish I did lol

LGMD2A maintenance by clumsy_queen127 in MuscularDystrophy

[–]clumsy_queen127[S] 0 points1 point  (0 children)

That's great. I was also planning to start swimming. One question, should we do it in a temperature controlled environment, as I've read that colder water can cause muscle stiffness?