July 1, 2017 at 10:01 am #150437Struggling to accept I have LGMD
Hi, I was diagnosed with LGMD back in 2009, but I am still struggling. Physically I can manage the changes and just adapt to the way that things need to be done. But, emotionally I am really struggling, one day I will be absolutely fine and then the next day, it could be the worst thing that has ever happened to me, I keep everything bottled up until it bursts as I don’t want to burden my husband or children with how I am feeling. I don’t have any family on my side, I lost both my parents and don’t see any other distant family members and all the ‘friends’ or so called friends I had, no longer bother, as I am not able to just drop everything and go out, life is pretty isolating and lonely right now. How do people cope??allycatz1979ParticipantPosts: 0Joined: 01/07/2017July 1, 2017 at 12:18 pm #150438Reply To: Struggling to accept I have LGMD
Hello and welcome Allycatz. For certain you will find many people offering support and help on this forum, so you have certainly come to the right place.
The ups and down of life with MD are something we all face, as with any challenge in your life. MD is for life though and so as you are already adapting to it that is good. If you do not adapt and keep thinking if only I didnt have this then you can never move on. I lost two careers through mine, but at the same time it enabled me to do many other things which I would not have ordinarily done, because my life had changed. It could have changed for many other reasons of course. I do believe taht you should involve your husband in this though, he may feel pushed away if you dont. My wife has been amazing for me and so supportive, I know for a fact that she would resent being kept out of the loop. With your children it is a different matter, depending very much on age. They may understand that mum is not her usual self, and again depending very much on their age, yu will need to find ways to explain to them what is happening. My seven children and numerous grandchildren now have all been very supportive and understanding, as well as keen to help make my life more easy. Even though the chidlren are all adults now I do not burden them with the dailyt change which inevtiably come.
As for friends they are often fair weather friends anyway. I would count yourself lucky to have one or two firend that will be there for you no matter what. I know when my condition first hit me I noticed a good clearing our of the friends that I had. all of a sudden I could not longer count on most of them for support.
I am sure many on here can happily relate similar tales, but now you have found us pease do not keep things bottled up. WE talk on here, we exchange ideas, we have a rant, and we help support each other. Come back as often as you like. Together with you family youh will find that life can be better than you imagine at the moment. There are some amazing people on here who will come back with very helpful links for you to follow up, so do keep checking in. If you have a down day, come back rant and rave, blow off steam no one will mind.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015July 2, 2017 at 4:31 pm #150440Reply To: Struggling to accept I have LGMD
Warm welcome to forum. have no solution to the vanishing friends act.
What I have found in recent years a very positive influence on my own health is taking up Disability sport. You will find a sense of community there not only with the competitors but possibly even with the families etc. your kids could even play a roll. I have tried Wheelchair Curling and currently Play a Wheelchair or seated sport called Boccia which is a bit like carpet bowls.
Doing something like the disability sports or even a hobby group creates a sense of being outside the house with dates and events to look forward to within a group that is understanding of them off days.
Some people using blogging as an outlet. Facebook groups can also be a good place to connect.
Always around to chat and your never alone
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010July 19, 2017 at 7:13 pm #150655Reply To: Struggling to accept I have LGMD
Sorry to hear of your struggles. I’m not sure that I have any specific way of coping that I can share but here are some thoughts. Developing an interest or hobby that works for you physically can be a good way to get to know new friends. Since retiring I have been trying to read more and have joined a facebook book club which I enjoy. Social media can work both ways but some well chosen blogs/forums/virtual clubs or groups can be helpful. I think it can be helpful to create easy ways for friends to connect, it can be easy for friends to drift away without intending to and I suspect that when I was more able bodied and life was busy with work and other commitments I may have let friendships fall away where I shouldn’t have done. I have found that sometimes just connecting with someone you haven’t seen for a while with a concrete suggestion of something to do together can reignite a friendship. That mightn’t be helpful for you but I thought I’d put it out there. I have found keeping a prayer journal helpful at times which has basically involved splurging all my deepest hurts, feers and angst to God in writing.
ElizabethAilsaParticipantPosts: 17Joined: 09/12/2011July 20, 2017 at 8:13 am #150658Reply To: Struggling to accept I have LGMD
I have been following a similar thread on a condition specific group I belong to. It seems like many of us experience friendships drifting at some point and many were saying that they just stopped talking about things because other people didn’t “get it”.
I find writing is a great way to express myself, sometimesI write seriously but other times I write poems and funny rants – it just depends on my mood and what I need to get out of it.
Another thing that gets me through the low points is my connection to people online. I have made many friends, all over the world. I have met a few of them in person but the majority are a huge source of support in cyberspace.
I don’t talk about my feeling easily, I guess I try not to worry others. I would rather deal with it than have to deal with others worrying about me but I am working on this!! I have broached the odd matter with my family and it has been a relief but I can only do it if I’m a n the rest gut frame of mind. I think you find support in many places and you do what works for you. A neutral third party can be helpful too.
The need for emotional support in living with MD is just beginning to be put higher on the agenda. It has been neglected in the past, in my opinion. As Mike said, we talk on here and support each other. We’re here if you need us!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015
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