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 .

Hi corbu..

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!!

@corbu512 wrote:

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