Viewing 8 posts - 1 through 8 (of 8 total)
  • #144210
    Just to talk

    :new: Hi my name is Catherine. I have FSH MD somthing ive been aware of for a long long time as my dad has the condition. I’ve been aware I had the condition from the age of 16 however I only finally got tested after having my first son at 24. I’ve seen my consultant twice and to be honest both times where absolutely pointless there was no support no advice just a casual everything ok right see you in a year. I’ve recently started seeing a physio which I wish I’d seen sooner. My dad attitude to his condition is disheartening it’s like he has given up and I don’t want to get that way I want to do everything possible to help myself but I just don’t know who to talk to I’ve tried talking to my partner and even though he is fantastic he just doesn’t understand. most days I feel I’m coping I can manage and I will manage but then some days I just feel so trapped and then I start to over think about a future that I no nothing about but I start to think one day I won’t be able to…… then I feel more alone as I have no idea who to talk to about my worries or even where to begin trying to explain. Sorry I guess I just feel lost.

    CHM
    Participant
    Posts: 0
    Joined: 09/11/2016
    #144211
    Reply To: Just to talk

    Hi Catherine

    I’m glad you have found the forum. We are a friendly bunch and although everyone’s situation is different, we will be able to understand a lot of what you are feeling.

    Physio is a great start. I found a private physio about 4 years ago and it was the best thing I could have done. I have Ullrich CMD and I had a period of ill health that meant I lost quite a bit of mobility and strength. I struggle in the winter months and since I’ve had physio, I feel I have been able to maintain joints and function much better.

    Please feel free to ask us anything. Usually one of us will know, have experience or know where to go for support.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #144253
    Reply To: Just to talk

    Hello and welcome Catherine. I too have FSH, discovered after my number 2 son was diagnosed with it. I was supposed to be a carrier only but when I was 48, fourteen years ago, it decided it would show its head and my arms and legs starting getting weaker. I also have complications inasmuch as my intercostal muscles, amongst others, are also affected.
    But I am also with you on not letting it control your life. I have had to adapt to it. I lost my first career when they discovered I was ill I was ‘retired’. So I took up another and happily went on with that for another 13 years until I could no longer hold a camera (yes I was a wedding photographer). Even now there are so many things to keep me going and I have taken up landscapes, and more recentlyu drone photography which allows me to get images from places I could never get to.
    But I too have been to the palces that you have been, and will go again. A future which you may know nothing about, is the same for us all with or without MD. What you do with youor future depends on your own determination. As I have tried to illustrate you may need to develop other skills and pathways, but they are there. Do not let it beat you though, becasue if you do give up, as you think your Dad may have done, then you will follow a slippery slope to the same place as he. I also make it a bit easier by saying to myself and others that with FHS there are only a small perecentage of MD folk with that which makes us rather special.
    May I also suggest that you contact teh Neuromuscular Centre at Winsford in Cheshire. they more than any other set of porfessionals have helped me deal with my problems. Not just with the specialised physio but with their deep udnerstanding of my condition and how it affects me in all the different ways. Please do call them.
    I would also ask if you have had your son tested for the condition. He may be very young but the sooner you know one way or another the sooner you can plan.
    I am more than happy to help with any questions you may have, but as we do not have a PM facility it will need to be through the forum. FHS is not teh end of the world, although some days it will seem like that. If you do do not apologise for them, accept them as part of a normal llife, everyone has down days. You have a long and useful life in front of you, not to mention the joys and rewards of raising children.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #144258
    Reply To: Just to talk

    Hi Catherine,

    Its very common to feel somewhat lost and fearful of the future. I personally do pretty well with a ‘can do’ attitude. and always have a ‘plan B’ its not full-proof and I still get the blues or hit brick walls. Social Services being my biggest brick wall lol but being open minded for the fatigue events and using aids to lighten the task has helped me greatly. I put off having any aids items to help me at all apart from a home stairlift.

    try not to dwell on the one day you cant be able to ..X..Y..Z and look for gadgets to make stuff easier. one of my first gadgets was a washing basket on wheels for hanging clothes outside.

    feel free to vent and rant.

    Cat
    ps. many of my life made easier techniques advice and aids/gadgets came from advice and brainstorming on this forum. If a task is getting that little bit tiresome. post and we shall put heads together.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #144269
    Reply To: Just to talk

    Hi Catherine,

    I have an unspecified type of Limb Girdle MD. Your post resonated so much with me as I have days when all’s okay and then days when it seems hard to cope with simple everyday tasks, which a few years ago were not troublesome. I think that you have to focus on the positives and what you are able to do. Also you have to stay in the present and not think about the past when life was more manageable nor think about the future as that’s unknown. Mind you that’s easier said than done! I can also empathise about the loneliness of having MD as none of my able bodied friends and work colleagues have any idea of what it is like to live with a progressive condition. You are not on your own in having good and bad days. Recently I have to admit that am finding it hard to cope mentally with things and have even lost confidence in going out socially. The forum is a good way to be in touch with others who understand what life is like. I have recently started to check it out fairly regularly. I can definitely identify with your post. Please do post again. In the meantime take care and focus on everything you can do. :)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #144571
    Reply To: Just to talk

    Hi my name is Yaseen

    I was diagnosed with mucale wasting condition at age 7. My hands and legs are effected. But lot of times I get symtoms other symtoms that I really get scared.

    A new symtom is I feel really cold this winter my back feels cold I think it’s my skin that feel cold. Befoure I could handle cold I could still but it’s my back that has cold sensatio. Now I’m very very worried anxious and I’m 26. Very new symtom my feel even with fat socks on they get very cold but always have done

    But this back feeling cold us a new one.
    IL be great full if you can give me some advice or if you suffer from this I’m sometimes want to cry. Git wife and a son and don’t want to tell them they get stressed.but please if you see this tx z reply.

    Yazzer
    Participant
    Posts: 3
    Joined: 28/11/2014
    #144576
    Reply To: Just to talk

    Hi Yaseen

    Symptoms do very between different types of MD and there is variation within the various conditions. I have however come across a lot of discussion about the cold. I get extremely cold hands and feet from Autaukn through til Spring and like you say, even with thicker socks they remain cold. With regard to may back, I find it hard to function if my back, my core is cold. This affects my already compromised breathing muscles and I tense up all over. In the World noted months I have an almost permanent hot water bottle. In addition, layers of clothing are better than a bulky jumper which can make moving difficult.

    There are a range of products available including packs that heat up in the microwave, heated pads that wrap round. Thermal vests can be a godsend if I get out.

    I hope you find a whole to stop the cold. Maybe other members will make some other suggestions.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #144577
    Reply To: Just to talk

    Hi Yaseen

    Symptoms do very between different types of MD and there is variation within the various conditions. I have however come across a lot of discussion about the cold. I get extremely cold hands and feet from Autumn through til Spring and like you say, even with thicker socks they remain cold. With regard to may back, I find it hard to function if my back, my core is cold. This affects my already compromised breathing muscles and I tense up all over. In the World noted months I have an almost permanent hot water bottle. In addition, layers of clothing are better than a bulky jumper which can make moving difficult.

    There are a range of products available including packs that heat up in the microwave, heated pads that wrap round. Thermal vests can be a godsend if I get out.

    I hope you find a way to stop the cold. Maybe other members will make some other suggestions.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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