November 21, 2020 at 6:09 pm #191116Reply To: Heart
Hi cat thank you for replying so quickly, I don’t have any gadgets at the moment but definitely need to get some I think this is the way forward, I’m waiting to see a genetic councilor but won’t be happening any time soon due to the pandemic I just need too know about how it’s going to progress and to be able to find out from them possible links to other health issues I have lots of questions I want to ask. Md is very challenging for of us both physically and mentally already never mind whats going, the only thing we can do is to stay positive anyway we can, hope you’re all OK. JeanetteNovember 21, 2020 at 8:39 pm #191117Reply To: Heart
Hi Jeanette. I too struggle with the mental side also. Going from playing sport for my country to wandering if I’ll be able to continue with my job. Do you have an email for your consultant? I have found I’ve emailed them on average twice a year to ask about things that have progressed and it seems to help me with things mentally. I don’t find phoning the gp any use as they don’t know what it is. Nobody likes the unknowing but I suppose at the end of the day nobody knows what’s going to happenNovember 22, 2020 at 5:34 pm #191121Reply To: Heart
I was a golfer. I got to play all over the world with it so very lucky to have had the opportunity fortunately I am still able to play however not able to manage what I used to. Certainly feel it after! Hopefully still got some time left to play, I think my legs and knee are just going through a bad patch! I used to teach disabled and under privileged kids, one boy who was blind and he was brilliant love all sports and yes when/if it gets to the stage it’s no longer possible I would love to participate in a disability sport. If not I’d be happy to sit in a golf cart and cheer on my friends!November 22, 2020 at 6:01 pm #191123Reply To: Heart
I never got that far. I represented Scotland for two or three years and unfortunately when I was training at the institute of sport I dislocated my shoulder and after recovery developed something called the yips which all golfers out there will know about! I tried for a year to overcome this but never got back to the level I was at. That has probably been my biggest mental challenge I have overcome. Working so hard for your dream and it disappearing in a split second But everything happens for a reason in my mind! I love golf more than ever before now and I love my job do you participate in any sport?November 22, 2020 at 6:13 pm #191124Reply To: Heart
Very positive attitude.
I hope to represent Scotland in the sport of Boccia. Which is a game with similar objective to curling (without ice lol) I also dabble in powerchair football.
"""""""What doesn't kill you makes you stronger""""""November 22, 2020 at 6:27 pm #191125Reply To: Heart
That is absolutely brilliant! I have seen that before but never knew it was called that. My old foursomes partner in the county golf is one of our top Scottish curlers! When will you find out if you will be representing Scotland? I have everything crossed for youNovember 22, 2020 at 6:42 pm #191126Reply To: Heart
We have very strong able and disability curling teams.
Training has gone to pot this year with all the covid hassles closing all the courts. Working on maintaining conditioning and hopefully get back on the pathway for development squad next year.
"""""""What doesn't kill you makes you stronger""""""November 24, 2020 at 11:11 pm #191187Reply To: Heart
Hi everyone, my gp is very good but they are not specialist, so I cannot get the information from them that I could get from a genetic councilor, but hopefully that might happen in the new year. It’s good to hear you have those goals in life even with challenges that you can adapt, I wish I was a sporty person.stil coming to terms with the condition, but just have to take each day as it comes. I also have days where I feel guilty for feeling sorry for myself, knowing there so many people out there with much worse problems, I don’t know if any of you get that. JeanetteNovember 25, 2020 at 12:39 pm #191193Reply To: Heart
Crazy cat, of course we get that because we have all been there. You also forget that whilst there are people who are worse off than ourselves there are many, many more who are better off with no MD or other condition to live with. If you were one of that group then you will also mourn the loss of the things that you used to do. I have lost two careers as a consequence of my MD, along with many other abilities. Yes, it saddens me to some extent, but it has also opened up new opportunities as well. Along this MD path we tread I have met so many amazing, and I do mean amazing, people whom I would not have have come across otherwise.I constantly meet the best of humanity who are happy to help oen doors or other simple jobs to make my life easier. I have, and I know it sound strange, leaned to enjoy my scooter, and have races with my grandchildren. I have been able to commit to other things which I would never have done had I been ‘normal’ (still trying to work out what that is.
In essence, do not feel guilty for mourning a loss, you are not alone.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015November 25, 2020 at 1:29 pm #191198Reply To: Heart
I never seen myself as a sporty person either. I first sought out disability sports after a year long period of bed rest and isolation following an injury. I needed something to help engage with other people on a social level and to get out the house. Hopefully next year will see more open days to come and try sports that you could maybe access to have a go.
Some of my family and friends are part of craft clubs. camera clubs. Getting out there and being part of something can really help an outlook on life. Make the old MD less of a main factor in our lives. I know personally that the online engagement of my sporting clubs and that of my family’s craft clubs has been invaluable this year.
"""""""What doesn't kill you makes you stronger""""""
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