Love in the time of CFIDS?

[doushenka]

I met my boyfriend last May, during the end-of-the-semester slowdown. I'd had to cut back on a lot of stuff that year, but I made it -- graduated with a 3.9, yay! I spent four months resting and felt perfectly normal. We had an absolutely blessed summer.

 

September, and my dad gets laid off. I get a nine-to-five at a call centre. Almost immediately, I get sick. That's normal, but then I keep getting sick. Between illnesses, I'm worn to the bone, falling asleep where I sit. I've experienced this sort of thing before, but it hasn't been so bad! Finally, in January, I go on a two-month leave of absence, in which I admit to myself and my loved ones that yeah, there's something more than a crappy immune system going on.

 

I point BF to a site about spoons and needing to balance activity and rest, because my energy really was/is finite. (Spent the first month sleeping. It's the end of the second month and I'm finally getting back to functional.) Unfortunately for me, he's skeptical. Says he doesn't want me getting into a victim mentality, and it's nothing exercise and eating right won't cure. I tried to tell him it's a tad bit more complicated, and I thought he was hearing me.

 

Until Wednesday. At this point, I'm waiting for my employer to pony up w.r.t. reasonable accommodations -- I cannot work in that hellhole, but I can be productive from home and maintain decent health. BF is mostly concerned that I am employable. We want to move closer together, yes, but what am I supposed to do, jump right back into a routine I know is harmful to me just so I can get an apartment in fall?

 

I have tried to tell him that he and I fell in love while I had a brief remission period. I just feel like I'm not being heard and it breaks my heart. I don't want to lose his love over something as stupid as a health issue. I'm the same woman I was -- I always needed to rest, even when I was healthier. I always slept more than most people. The dratted brain fog had already kicked in, though it is worse now than it was.

 

I wish I'd known earlier what a whammy a full-time job would end up being, and how he'd react, because right now, I'm pretty much unemployed and struggling to put together a future for myself and for us. If he's going to resent me for my crappy pieces-parts, I wish he'd just say so.

 

Right now, I'm scared and adrift. I need him not to abandon me.

 

Thanks for listening. If anyone has any advice on the relationship end of things (that IS NOT "leave him" -- I won't throw away love, either!) I would appreciate it. Heck, if anyone else here lives with CFIDS, I'd love to hear how you cope.

[BlueEyedGirl]

Sorry to hear that you are going through this. It's a soul destroying illness. Firstly you feel like death physically and secondly, people do not understand you, beleive you and think that you are either lazy and depressed or faking it. At least with other chronic illnesses you get some sympathy and help. It's a lonely place to be in and I don't really have any answers for you.

 

I doubt that people on here know much about this illness - you are probably better off posting on CFS or other chronic illnesses boards.

[BlueEyedGirl]

BTW just wanted to add that do not under any circumstances go back to full time work or even part time work that you feel is too much for you. You may be risking permanent disability if you push yourself. You need to prioritize your health over your BF. Ultimately someone who loves you WILL understand you and support you. It is not love if someone only likes you when you are well and fun. You are seriously ill, all your BF's "victim mentality" talk is complete and utter BS. You need to realize that arguing with him and trying to make him understand only exhausts you further.

[doushenka]

Thank you so much, BlueEyedGirl. Feeling lonely in the middle of the night is awful, and I'm glad you responded. Sometimes it takes another pair of eyes to help clarify the right path.

 

We don't full-on argue. We talk, and we'll make a little progress. It's slow going, and it leads to a lot of uncertainty on my part. Unfortunately, the insecurity hits right when he's least able to reassure me, like late at night, when he's down with a cold (oh, irony!)

 

I think eventually he will understand; he loves me, and even as early as ten months, is pretty darn committed to what we have. I also think I might not have gone about it the right way. Really, I'm ready to show him the accepted literature on the subject -- by this I mean CDC, not just support groups -- and keep referring him back there. I think he's struggling the same way other people struggle to understand this, and that's fair enough. It isn't as if I was able to put the pieces together in May.

 

I'd also like to involve him in light exercise that will at least help strengthen me, like walking, swimming, and a bit of backyard archery. Full-on gym sessions, no. That's begging for pain. But quiet things in the fresh air that balance out all the time I spend dozing indoors, that might be a way to show him that I really am committed to getting better, and that I'm not just giving up on myself or on us. I started the multivitamins on his suggestion; seeing that I've stuck with them does go a long way towards his understanding of what's going on.

 

A lot is up in the air right now, and that unsettles me. It had all better come back down soon!

[BlueEyedGirl]

I think the right thing to do is to show him materials about facts of your illness (like CDC or other reliable sources) rather than getting him to read about support groups and "spoons". Men are generally logical rather than emotional so he needs to see the facts that your illness is real. BTW I think that spoons site is great and makes perfect sense to people going through chronic illness but is much less clear to the outsiders (especially male outsiders).

 

You do need to give him some time to adjust and understand if he is willing. It is a complicated illness that is diffuclt for people to understand and you need to be tolerant of that BUT if after say 6 months and showing him all the related materials he still thinks that you are "playing the victim" you will need to reconsider the realtionship.

 

Only you know how much stress this situation with your BF is causing you.

I hope that you are getting some support from your family or friends.

Can I ask how old are you?

 

P.S. Just remember that if he truly loves you, it will work out fine. This experience will only bring you closer together. If he doesn't truly love you the realtionship will end but in that case you haven't really lost anything anyway.

[doushenka]

Since I can't do this via PM, I thought I'd come back and update.

 

It's been about seven months since I left the job from hell and nine since I stopped being able to work. My moods have all come back up; it's only my stamina that's playing silly buggers! Beloved has seen this for himself and come to understand my reality. So I'm not moving out this year, or next year; he wants me healthy more than he wants me nearby, and since I'm thisclose to getting my driver's license, I'll be able to come see him more often.

 

I'm twenty-three, by the way. I was just really slow about that license.

 

Beloved and I are doing better than ever. This will be our second holiday season together, and I'm already looking forward to taking him to Canada in the spring. He truly does love me. The feeling is very mutual.

 

Thank you so much, BlueEyedGirl, for listening when I needed an ear.

[SadandConfusedWA]

I am glad to hear you are doing better