April 9, 2013 at 8:12 am #74782Boyfriend with fsh
Hi, this is my first time on any MD forum. I have been in a long term relationship with my boyfriend who has been diagnosed with fsh, most of his family members are also affected. We first met five years ago when he was an avid biker/swimmer/runner but has since lost much of his ability to partake in many strenuous physical activities. He still has his ability to walk but I have noticed his muscular deterioration over the years (he has also started falling a lot more recently). I really love him, want to get married, have children, everything with him and I know that we will have to be strong in facing what he will be going through in the coming years. My question is what can I start to do as a caregiver? Or also, where could I look for more information on what he will be going through as he gets older?
I am especially worried because he is very self-conscious of how others perceive him and would like to know what I could do to help him bring up his self esteem.
Thank you!April 9, 2013 at 1:01 pm #88290Re: Boyfriend with fsh
I feel such sympathy and gratitude towards care givers, you have a thankless job yet we are so thankful for it. Forever treading that fine line between assisting to do and taking over … I have had experience where I felt uninvolved in my own decisions and that so angered me. Also you have the minefield of knowing when to help and how to help when your partner is ready to accept the help.
So much of the conditions management will be dependant upon how your partner feels about his condition. Adjusting and accepting are such hard hard tasks. I can tell you now, from myown experience, you two will have fights, you eill argue, you will cry and you will feel dispair, comes with the territory. How you both handle it, cooe with it, address it and move on from it, is doen to the both of you.
Make good memories, take calculated risks at adventure, document them and relish in them – as someone said to me, you live with your memories one heck of a long time. The holidays, sailing adventures, music gigs I have been to I can revisit within a blink of an eye and beth in the fun of them again and again. [Is your fella into sailing or ships in anyway, know an awesome adventure charity that sails the globe with wheelchair and other disabled crew].
As for information, you may find yourself uickly swamped with it and wonder which is relevant and which is accurate. I assume your boy friend has regular medical appointments? Physio, Neuro, etc?
The following is the link to the area of the main site that details FSH – FSH Fact Sheet
You may also find things of interest at the following
There also many helpful guides in the free publications section Free Publications Lists
Come back, ask questions, we will try our best to help.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015April 9, 2013 at 5:37 pm #88291Re: Boyfriend with fsh
We have many great memories and thank you so much for the readings!
And I learned that I needed to be patient with him opening up to me on what he is going through a long time ago. Its been a very slow process but I understand that it is hard to open up. He does have regular appointments but doesn’t really like to talk about them. So far I have gone to one of his Neuro appointments with him, which was a very big deal, but even so he had me wait in the lobby.
I guess what I have been doing is just waiting and listening for him to open up. When he complains about how tired he is or how much his body hurts I try to be supportive by at least kissing him, holding his hand or trying to show that I’m there with him, I also try to give him massages, or letting him relax while I tend to chores or cooking.
I know that right now he feels like his condition is just something that has hindered what he can do in life. He at times tells me how afraid he is of not being able to do what he would want to in life. It has also affected him in a way that makes him feel like he is less of a man since he knows that in the future it will affect his ability to work for long periods of time, playing with our kids, or generally providing what society decrees men should provide their families. It is with these issues that I am often stumbling with what I can say to make him feel better…
Sorry if this was kind of difficult to read I’m sort of having a hard time expressing myself.April 10, 2013 at 4:02 pm #88292Re: Boyfriend with fsh
Don’t apologise, there is nothing there that is not totally natural considering the circumstances. You seem to know him well, the trickiest thing is learning when he is speaking about the difficuties is when it is a rant, or a venting of frustration and when it s a cry for help.
As for the future, he is not the first nor the last to have those thoughts about his future role, many men have successfully coped with the enforced changes. There are ways and means and support to deal with the financials, medicals, adaptions etc, but by far the hardest is mentally adjusting the mind set, and there is very little that can help, other than reassurance that there are answers, and there is help, and he does have worth etc.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015April 10, 2013 at 4:38 pm #88293Re: Boyfriend with fsh
I should think, from personal experience, your patience may be tested because his will get hammered. If he’s anything like me it’s the frustration of being able to do something one day & not the next that p****s me off the most & I wasn’t as previously as active as he sounds. So, bear with him & the very best of luck .
There is nothing noble in being superior to your fellow man; true nobility is being superior to your former selfI, Disabled BlokeParticipantPosts: 540Joined: 29/10/2010April 12, 2013 at 5:40 am #88294Re: Boyfriend with fsh
I totally get what you are saying woogy. The reason why he was so active was, as he described it, basically his rebellion against MD and him taking advantage of the last moments he would be able to participate in so many activities. But I do see that he is frustrated with loosing those abilities.
As for me, I don’t think I have come to the point where I’ve lost my patience yet. I do sometimes get sad when I want to go out for a walk or around the city and he isn’t up for it. But I believe that the area that I am most frustrated in is in the fact that I don’t fully understand what he is going through so therefore I don’t feel like I help all that much.April 14, 2013 at 2:54 am #88295Re: Boyfriend with fsh
Sorry I am typing on mobile phone not PC at the moment so it’s a bit difficult :o) hopefully this will make sense!
I’ve pretty much been in your situation for the past 11 years.. I dated my partner who had limb girdle muscular dystrophy for 10 1/2 years. We met when he was 25 and I was 17, and started dating a year later when my ex (a friend of his) dumped me under very distressing circumstances. Probably a lot like you, I never saw him as having a disability.. it never even occurred to me when we started dating. I set about finding about as much out about his condition as I could which was difficult because I think it took him a couple of years to give me a name for his condition. He always used to say he had a muscle wasting condition. Nothing more than that.
He was already using a power chair when we started dating but I too noticed the decline in his ability over 11 years. But no one ever made a big deal of it.. We just dealt with new challenges as they met us.
I was just finished school so was looking for work and ended up working as a personal care attendant for people with disabilities. This helped me learn how to look after him and I got to deal with many people who had entirely different attitudes to their disability.
There was a time when he wouldn’t allow me to go to physio with him, and I wouldn’t be allowed to go to doctors or neurologists.. But that eventually changed when he could see how serious I was about our relationship and started asking me to take him and come in with him. He used to break up with me on a regular basis and say he didn’t ever want to get married nor have children, but I would eventually talk him down and tell him that he meant the world to me and come what may I always wanted to be with him and that wouldn’t ever change.
I guess luckily for me he at least had the appearance of being reasonably comfortable with who he was, and so didn’t really have any self esteem problems. But I would always tell him how much I loved him and how gorgeous he was, and I think all men like to hear that no matter of disability or not. Sometimes he would get a little bit down but I would just hold his hands and look into his eyes and tell him how amazing he was and then he would usually be okay. In fact he was usually the one giving me advice or trying to cheer me up.
It eventually got to the point where I was taking him to all of his appointments, neuro, cardio, respiratory, physio, hydro, gp dietician.. and I knew more about what was going on with his health than his parents did. It was a huge responsibility as much of the time he couldn’t remember why a doctor had put him on a medication and I would have to explain it to him. He still lived with his parents though.
Then last year at the end of June, he caught pneumonia and ended up in hospital. He was on normal ward for 2 days then ended up in intensive care for a week. I was there from opening of visiting hours till past the end of visiting hours. His parents realised very quickly that it was of huge benefit to him if I was there the whole time so his parents and his brothers would rotate as the 2nd visitor. This was because I was the only one who could understand what he was saying with his breathing mask on, and sometimes I would even be able to tell what he wanted when he didn’t tell me. Also all the doctors needed to ask him questions but would communicate with me as I knew the answers anyway. And it saved him a lot of energy.
A week after he was admitted we were faced with the news no one wants to hear. His condition wasn’t improving despite him looking better..
He was trying to save money for an engagement ring but was having trouble finding work, and wouldn’t propose if it wasn’t done ‘properly’ so I went into his hospital room late that night with his middle brother, the social worker and the doctor and proposed to him. He accepted very excitedly and I promised him that I would organise a marriage as soon as possible. He was really excited about it, as was I, but sadly his lungs had different ideas because he passed away the day I was going to lodge the papers with the courts.
I am so grateful to have had such a passionate and loving man as my fiancé and I can only hope for you that you guys find that happiness too. It’s never easy.. I know in my job that attitude had a lot to do with the relationships that we have with other people.. I have many clients with spinal cord injury, some married after their injury, some married before. One married his care worker and divorced 3 years later.
By all means, be there to support him, but you also need to be able to ask for support yourself. These forums are great for that. Carlos, my fiancé, had people to shower him, feed him and get him out of bed. That was the outside support he sought to help me and his parents. All of his other daily living activities were tended to by his parents and I. But if we’d had to do everything it would have become too much. I would shower him twice a week to save on hours with his carers that he could use for when his dad or I weren’t there.
My other suggestion is always to make sure you do things that you both enjoy. I would get upset because sometimes it seemed like we would only ever be going out to doctors appointments and we never actually went out on dates as such.. so he would always take me for afternoon tea or something after appointments or we would specifically choose an afternoon and go out and do something like drive around near the water or get gelato. I always enjoyed that.
One of the hardest things to get when you have a disability is time to yourselves. I loved just being alone with him. The simple things are always the best.
If you’d like to ask any questions, fire away. I hope my experience has given you a little insight anyway :-)
Take care!!AngelicPrincessParticipantPosts: 85Joined: 21/12/2010April 24, 2013 at 6:21 am #88296Re: Boyfriend with fsh
Wow angelic. Thank you for sharing your story and I truly wish that things would have ended better. Although your time was short together I am sure that he knew just how much you loved him and that is something that requires no marriage license to prove. I am sorry for taking so long to reply, after reading your story I needed some time to think about all that you have gone through before I could allow myself to reply.
Our stories are very similar. I met my boyfriend when I was 17 and he was 21. My relationship has also been through a whirlwind of roller coasters, with him also breaking up with me and my needing to prove to him that I am serious when I tell him that I love him. Unfortunately, I am studying to be an architect and have not had much training in care taking but I am trying to prepare myself for when he may need more of my help. I think it is wonderful that you work as a care attendant, would you recommend me volunteering at a hospice or retirement home for first hand experience?
I am really happy to have found this forum and been given the chance to learn more from everyone here.April 24, 2013 at 5:40 pm #88297Re: Boyfriend with fsh
I am really happy to have found this forum and been given the chance to learn more from everyone here.
We are glad you found us! We all learn from each other
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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