Sign Up Today!

2807 · 10-17-2011, 11:24 PM

I am finding things harder and harder and as I write this it is through tears,
I feel guilty posting this as it is not very positive and makes me feel selfish that I cannot share a good story with you all

I am 42 and have to walk with a cane, and nowdays I am frightened to go anywhere alone, as the fear of falling i suppose is tremendos. I am embarrassed and sometimes feel so helpless that I just don't want to do anything but stay at home.
I wonder if the less that one does, does this speed up the onset of the LGMD, but I even find walking is getting harder that I would rather not do it if given the choice, but should I make myself keep doing these things to keep the MD at bay??......
My husband has just gone to work so now I can have a good cry feel sorry for myself and then hopefully I will realise that that doesn't help atall so just stay positive and get on with it.
Heidi.........

mandy37 · 10-18-2011, 01:24 AM

Hi there

Firstly a hug for you

I think we've all been there and to vent is good, to feel anger, self-pity, and sadness is all part of some kind of healing process for ourselves.

About 10 years ago at the age of 29 I started walking with a cane that changed into a crutch
At that time I became angry that my independence was being taken away but after a while it became the "normal" part of my life.
Today at the age of 39 (I also have LGMD and FHSMD combined) I can only walk unassisted at home because of flat surfaces and the fact that I cannot walk with shoes on that I can do at home.
When I go out I have to use a scooter or wheelchair that I still sometimes despise
If I can give you advice (sometimes this advice seems hopeless to you) make the most of your ability to still be able to walk even if the fear of falling is overwhelming (your husband will always pick you up as my boys do without judgement)
I know it sounds like stupid advice as I was given the same some years ago but I would give anything to go back to that time I could still walk outside "alone"
I didn't want to go anywhere but 2 weeks ago after playing a bit of table tennis at home (my boy and his friends brought it over) trying it out after a lot of encouragement (although I had to hold onto the table to stand) I realized that I can still do these things.
I’m starting to focus my attention to the things I can still do although I still fall – get angry and cry because of self-pity
You are allowed to get angry, cry, throw things (make sure no-one is in the way) to help you out.
Your words “I wonder if the less that one does, does this speed up the onset of the LGMD, but I even find walking is getting harder that I would rather not do it if given the choice, but should I make myself keep doing these things to keep the MD at bay??......”
Keep going – do not give up because then you do you will never again want to “get up” from this MD
I hope my response will be of some help to you and if not don’t worry I was the same but I eventually got there although I still tell my kids to “duck” now and then

Dreaman · 10-20-2011, 01:00 PM

Today a good cry maybe tomorrow a good laugh we have all been there and continue to go there. Even thou we try to stay positive we all have the pity party days and sometimes it is just what we need - feel sorry for ourselves and then get over it. Until next time. Sometimes I think that even makes me stronger.

My Dr. told me not to give into it because whatever muscle is still there needs to be used. We can't build muscle but perhaps we can slow the wasting? It would be so much easier to get up and do something if you knew it was going to do some good. I just look at it as a blessing every morning I get out of bed and I can still make it to the bathroom.

Everyday we just need to look for the things we can still do and not dwell on what we can't. I know easier said than done right?

I just got back from a Scrapbooking retreat (3 days). I had to take my own chair(a tall one) and this year I had to take a lift for the toilet. I almost didn't go because of this but I am glad I did it is so much fun.And when it came down to it nobody cared.

I too have switched from a cane(about 5 yrs. ago) to arm crutches(much more stable for me.They have saved me from many falls) I mostly use 1 but if I have to walk on something uneven like a little grass I use 2( now this is almost impossible for me to do but in a pinch if its not far I can do it).

I am not spreading religion here but I read this a long time ago and it has stuck with me.

Jesus said "I never said life would be easy I only said it would be worth it"

I try to remember that there are people out there so much worse than me so when I have a bad day and think why me? The real question is why not me????

Anyway the venting does help and then we move on til next time.

Dreaman

2807 · 10-20-2011, 01:31 PM

thank you SO much Mandy37and dreaman, for your replies it is so comforting that there are people who understand EXACTLY how you feel cos they themselves have been there.
totally agree with everything both of you have said and am thank full for this board to help each other in our not so good moments and also to hear and be inspired about our good moments Mandy with the table tennis and dreaman with the scrapbooking.
Thanks again both of you

Heidi.

Sign Up Today!

Join Our Newsletter

Whoops,

Thank You