Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi
I like most of you have had to give up on so much because of this illness, I have been on my own for a long time now, I have made my world quite small so that I could cope better with this illness working part time and not doing anything socially and had got to a point where I was quite happy living this way, I had reached a level of acceptance after a long time with this illness.
I have now met someone its early days but even now am finding it too hard to maintain anything and feel awful for days after I see him as have pushed too much, its brought back all of the feelings of how unfair this illness is how envious I am of others living normal lives and how I want so bad to be well. Is having love in my life too much to ask.
I was honest from the beginning but I don't know that anyone can really get it and know the times I have seen him I have really pushed and ended up in pain or sick but i'm scared to tell him how bad it is in case t scares him off, We are both in out 30's, I know its hard when you get sick and are in a relationship but is it just too much to expect to be able to start a relationship when I am this ill.
I know there are people on here that cannot even leave their bed so I probably sound ungrateful for what I have, sorry for the moan, its just how much do we have to give up on. Its like when I was in my little world and not open to these things id did not hurt so much to not have it, but now I have opened up and seen the possibilities its more painfull.
sorry for the long post, prob makes no sense just had to get my feelings out .
Luna x
I like most of you have had to give up on so much because of this illness, I have been on my own for a long time now, I have made my world quite small so that I could cope better with this illness working part time and not doing anything socially and had got to a point where I was quite happy living this way, I had reached a level of acceptance after a long time with this illness.
I have now met someone its early days but even now am finding it too hard to maintain anything and feel awful for days after I see him as have pushed too much, its brought back all of the feelings of how unfair this illness is how envious I am of others living normal lives and how I want so bad to be well. Is having love in my life too much to ask.
I was honest from the beginning but I don't know that anyone can really get it and know the times I have seen him I have really pushed and ended up in pain or sick but i'm scared to tell him how bad it is in case t scares him off, We are both in out 30's, I know its hard when you get sick and are in a relationship but is it just too much to expect to be able to start a relationship when I am this ill.
I know there are people on here that cannot even leave their bed so I probably sound ungrateful for what I have, sorry for the moan, its just how much do we have to give up on. Its like when I was in my little world and not open to these things id did not hurt so much to not have it, but now I have opened up and seen the possibilities its more painfull.
sorry for the long post, prob makes no sense just had to get my feelings out .
Luna x
I can see how it would be hard for people that don't have CFS to understand it. I mean hell I have been diagnosed for about 4 years and I am still learning about it. But If someone cares enough it doesn't matter what they understand. As long as they believe that you are sick and want to learn what works and doesn't work for you. Why not give it a try and find out if life would be better or worse with someone to love.
I'm sorry if I have wasted your time. I'm also sorry about your struggles and will be sending prays your way.
Kenzie
Listen!! You deserve someone to share your life with. We all do. We weren't meant to be alone.
There is a plan for each of our lives! I truly believe that! I didn't meet my husband till I was 48 years old and got married at 50. I thought that I would surely be single forever. Got used to the idea! I was SO shocked and surprised to meet and fall in love this late in life.....but it happened for me, and it can happen to you.
I realize that I was healthy when I met my husband, and you are not healthy while dating. This changes the game around and makes it harder. But, I'll tell you. My husband watched me get sick with this illness, take a horrific physical plunge, have to quit my job, go on disability and lay in bed. Some kewl wife HE got after waiting all these years? You'd think he'd feel that way...but NO. The right man is out there for you. My hubby totally and completely believes in CFS. He watched it take over my life and suck it out from under me. He is my advocate, my best friend! I'd be lost without him.
Here's my point. (I'm a woman, it takes a while to make a point!).....trust your open and honest feelings to the person you see as someone you could care for/date/love. Be totally honest. You may be shocked at how many men/woman are just natural born caretakers and would just love to slow down their lives a bit, and fit into yours. I say give it a shot! Don't be afraid. Certainly don't physically push yourself and make yourself sicker. TELL HIM! If he's worth his salt, he'll understand, GOOGLE CFS, learn all he can and support you. If he finds you to be a hindrance to his fun, then he ain't the guy!
YOU are worth waiting for. YOU ARE somebody. And somebody out there is gonna just love the stuffin out of you!!! You'll see!
I totally understand how you are feeling. My daughter & I share a home, including my two grandchildren. She has Lupus, Schleraderma, DermatoMyositis, RA & Fibro, one of her goals is to marry. We have talked long & hard about it, looking at it from every angle we can & I can see no reason that it is not possible. It just takes the right person & they are out there. Love covers a multitude of problems.
I hope all works out for you, enjoy yourself, hugs, Denise
Think if there is anything you can do different that might help. Even a little help is good.
I found that in social situations I tend to stand, especially if everyone else is. I try to remember to sit down now. It just helps me last longer.
Walking extra slow helps me too. I can walk fast, but I'll pay for it. That can help too and from the car. If you just tell him that you will "last longer" if you walk slow, it ought to work out nice. Walking slow can be romantic. And if it means you feel better for longer, he will probably be happy to walk slow with you.
If it helps, ask him to come over instead.
Just think it through. You might think of other little things.
At some point it is good to talk to him about this. It can be a little at a time if it makes you feel better. You will know when the time is right to tell him a little more.
But honestly I'm 56, and I've never been married. But things would have to improve before I would ever consider having a relationship with a woman. And I'd like to think that would still mean doing the relationship right. Thank you, thank you very much.
I was already sick when I meet my partner, although I was at one of those points of feeling a little better. I was open and honest right from the start. About 5 months into our relationship I had another bad crash, and I can tell you that having the extra love and support, someone to stay home with you and spend time, sure does help. There are times when it can get a little rough because I may not have the energy to deal with whatever may be going on, but we talk about it and work through it. I say it's definitely worth it! Like other people have said, just be as open and honest as you can.