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Shipit82

New member
Joined
Mar 29, 2015
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Friend
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Country
US
State
PA
Hey everyone, and thanks in advance!

I've been with my girlfriend now about 2 years, and I can honestly say she's the person I've clicked most with. Our relationship doesn't have any of the typical issues (mistrust, fighting,etc) so I'm thankful for that. I truly love her and think that she's the "right one" for me. She was upfront about having FMS, and she has pretty bad fatigue associated with it. I've known about it the whole time and generally I try to be as understanding as possible about it.

The past few months have been pretty tough. We don't live together, but don't live too far either. Our work schedules haven't been lining up at all (but I am starting on daylight this week)...I work 12 hours overnight (and typically have a ton of OT), and she works basically 3rd shift. Probably for the past 5-6 months though I'm only seeing her once every 2-3 weeks. We do end up having to scrap plans because she's not feeling well, or exhausted. I've seen her asleep for 15-16 hours here on her day off, and I've been in that spot before myself so I understand.

We do talk everyday. Mostly through texts (which my family thing is weird) but it works out to be a little easier since neither of us can really talk on the phone at work. I definitely don't want to make her feel pressured, but at the same time I've been feeling pretty lonely. I know she can't help it.

It's still a pretty new situation for me, and I'm having a pretty tough time with it right now. I imagine some of you have been in the same/similar position. I'd love any advice on how to work through this!
 
Joined
Mar 28, 2015
Messages
12
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Relative
Diagnosis
00/0000
Country
US
State
CA
I'm in an almost identical situation with my GF. We've been together for a shorter period of time, but otherwise your story sounds like I could have typed it myself. My GF takes pain medication (Vicodin, Percocet) pretty regularly just to be able to function. It's not ideal but it's the only way she can deal with the pain. She recently started using a CBD pen which is basically a cannabis oil vaporizer with the psychoactive component removed so it's only the CBD's and other medicinal aspects of the cannabis without the part that get you "stoned" and she's been having good results with that and able to reduce her use of pain medication, but it costs about $30 a day for the CBD oil, and this may not be available in your state. We're also going to start using a "juicing" regimen of putting fresh picked cannabis leaves into a commercial type juicer with carrot, kale and other vegetables. Many other auto immune diseases and cancer patients have been treated this way with good results. As you realize, diet, exercise and a regular sleep schedule help a lot too. Just being supportive for her and reducing stress as much as possible also has incredible results. I've found a regular and consistent sex life seems to lessen her suffering a bit also. Best luck.
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
I applaud both of you! What wonderful men you both sound like. I know there are some on this site who are single and worried about whether a guy will be interested in them because of the disease. I sure hope they see this!

I am a fibro/chronic fatigue sufferer. I've been married for 18 years (together 23). It sounds to me like you are wisely looking past the disease and recognizing the wonderful woman each of you have. It really is admirable and difficult, I'm sure. My husband has been my rock and biggest supporter with my illness. I love him so deeply because of that. Unfortunately, you are likely in for a lifetime of the illness, unless they come up with a miracle cure. It doesn't have to be a curse though. My husband and I still do things, but I usually have to take a nap before. We just add that time into our prep to go out timeframe. I have had to cancel fun things sometimes, but I try hard to push myself so we don't miss out. We both just know that sometimes I pay the price the day or two after. It's part of the way it is for us. Example, he wanted to go to a food and wine fest that happens every year. We went yesterday. We sat more than than others as we would just stop the wandering, rest, then keep wandering. I took a long nap when I got home (woke up at 11:00 p.m.). We are talking about going to the dunes next month. It's possible I won't be able to ride my quad. I'm prepared for it. If I'm having a good day though, I'll be out for a ride. I keep my pain meds close. If I can't ride, I have my books/kindle. Hubby still does whatever he wants and I'm happy with that. I usually get up late because I don't sleep very well. That's okay too! Take life in stride and let your significant other guide the pace.

As for the sex life, as I still try to convince my husband, quickies are great! I love sex and wish I had the energy to do it more. That said, I've never said no. Have an open conversation about it. We laugh sometimes when my body starts wearing out. He can tell. Again, quickies are great! I would love my hubby just grabbing me and taking me here and there.

Good luck to you and your girls. Invite them to this forum. It's been really beneficial to me, helping me to mourn who I used to be and embracing who I am now. I was forced to quit working last July....that was so hard to accept.

Hugs gents.....
 
Joined
Mar 28, 2015
Messages
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Reason
Relative
Diagnosis
00/0000
Country
US
State
CA
Thank you for the kind words. As she mentioned, being ready to cancel any plans at a moments notice is an important thing to get comfortable with. We don't really go out much but it doesn't really bother us. Life becomes much more spontaneous dating someone with Fibro as you never really know when it's going to be a good or bad day. When it's a good day we try to take advantage of it and have some fun but when it's not a good day we just reschedule or cancel our plans. It's actually not such a big deal as it sounds. She had problems with previous boyfriends who always wanted to go out to concerts and things but I'm pretty comfortable just watching a movie and relaxing most of the time. We are also in our 30's so we have already gotten past our wild 20's. Thankfully she was pretty healthy for most of her 20's so she was able to get all the parties and late nights out of her system before she became ill. I've only known her with Fibro, so I don't really know anything different. I imagine it would be more difficult if you knew the person before the illness when they were healthy and full of energy. I fell in love with her knowing she was sick and would probably never be able to have an active lifestyle, but if you really love someone those things don't matter.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
hello guys. i really enjoyed reading your posts. you both noticed that going out and partying is not what love is.
i know your schedules dont match as i too worked 12-20 hours shifts. i even worked Fri,Sat and sun. off the rest of the week.
i tried to come home and get rest. i would get up early before my work day to talk to my wife. on my days off i would go up to her work and have lunch
or dinner.sometimes she did the same. sex was hard to fit in on those schedules. love and sex are two different things. yes sex does help reduce the pain because all you muscles contract and release after. you both are wonderful guys with big hearts and your girls appreciate your company and understanding.

as a man with fibro. i applaud both of you! like tbaer said bring them here to meet us. we would love to hear their story's.
 
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