Fibromyalgia/CFS

  • Thread starter Thread starter Feanaro_s_Wife
  • Start date Start date
Status
Not open for further replies.
I have fibromyalgia and some times the fatigue can let me sleep for more than a day - but my husband doesn’t understand.

He thinks that I am lazy - yea, sleep four days with just minimal times up for fluids and potty and I am faking.

Oh well, perhaps someday,…
 
Well, I’ve never been married, so I don’t know anything about explaining to spouses, but I do know that my dad had a hard time believing that I was sick.

I started showing symptoms at age 8 (if not earlier), and was diagnosed at age 13, but I don’t think my dad really believed me until I was 16 and we went to a CFS expert, who was able to explain the disease really well. (Plus, Dad watched the results of my special blood pressure testing…and even he could figure out that blood pressure of 96/92 isn’t normal. :rolleyes: )
 
It’s so hard to make those choices and prioritize, and to have to do it constantly. Sometimes it’s like “OK, who do I disappoint this time?” I’m fortunate in that most of my family and friends (who have stuck with me these last 8 years) are pretty supportive, and the ones who aren’t I guess just aren’t in a place that they can understand. Then I remember how judgmental I used to be (and sometimes still am :eek: ).

Here’s one of my latest struggles.

So, it’s Lent, and I feel like I should be giving something else up or doing something extra, but I’m already giving up so much (foods I can’t eat any more, activities I love to do, etc.) that I just can’t bring myself to give up anything else. I’m trying to pray more often during the day, and I really can’t fast much because of my health and blood sugar, but I still feel like I’m not doing enough. Anyone else struggle with that?
 
Yes, I’ve sometimes felt that way. I worry that I’m not doing enough. Or, if I’m too sick to make it to mass, I worry about if I’m *really *too sick, you know?

For Lent, I do try to fast as much as I can without it driving my blood sugar berserk. So, I might eat a protein bar or drink an Ensure during the day. I really, really **don’t **like those food items, but they’ll keep my blood sugar going. And even after choking them down, I sure don’t FEEL like I ate anything, so I think it counts. 😃

I think that CFS/fibro can make you doubt yourself sometimes. I mean, everyone else always seems to be saying “if you only tried harder, you could do things”. It’s hard not to say those things to yourself!!
 
TraderTif said:
if I’m too sick to make it to mass, I worry about if I’m *really *too sick, you know?
I think that CFS/fibro can make you doubt yourself sometimes. I mean, everyone else always seems to be saying “if you only tried harder, you could do things”. It’s hard not to say those things to yourself!!
Click to expand...
So true!

I do that with Mass as well, but then I remember that when I’m feeling half-way decent, I WANT to go to Mass, so even if I’m doubting whether or not I can make it, that means I’m not doing too well.

It’s often not until I start to feel a little better that I have the comparison factor as to how fatigued and out-of-it I was. I’m trying to remember this when I’m in the thick of it, which is hard!
 
TraderTif said:
I think that CFS/fibro can make you doubt yourself sometimes. I mean, everyone else always seems to be saying “if you only tried harder, you could do things”. It’s hard not to say those things to yourself!!
Click to expand...
Exactly! And when you try to tell yourself differently it feels like a lie. So then when someone accuses you of being lazy or not trying hard enough you get the guilt that you would get if you really were lazy or not trying! ARGGHHHHHH.

As for the Lent issue, I feel the same way. Some days I feel like I don’t have anything to give up. Hubby gave up video games. I hardly ever get a chance to do anything just for fun. This forum is pretty much it. But it is also my lifeline to the outside world and a huge source of support. I don’t think I could give it up. Well I could but I don’t see the benefit. So I just try to pray more, practice more virtues, acknowledge all of the good God does in my life every day…basically focus less on me and my problems and more on the good stuff.🤷
 
Thanks so much for the recent posts. It is so amazing how these are always just what I need to read. It really gives me hope in educating the world about these diseases. We don’t know each other in real life and yet the symptoms and struggles are so identical!

I deal with Lent in a similar way. I have tended to “give up” negative thinking about my condition for Lent. When I have pain or miss events, like Mass, I try to offer that up in glory of God. He allowed this in my life and it is my job to unite it with His suffering.

Right at this moment I type that with such ease, but when the pain returns so does the guilt. Thank you for all the support!
 
Status
Not open for further replies.
Back
Top