Yes, I'm in bed most of the time these days. 2 years ago it was my constant migraine that put me in bed a lot (which I still have, but has lessened a lot and I've learned to live with it better), this year it has been my fatigue keeping me there. This month it has been especially bad with both fatigue and worse back pain (plus all the regular aches and pains of course). I find ice and heat really help with my back and yes, the bed is SO much more comfortable than anywhere else in my house (we got a new bed 2 years ago and it was the best money I've ever spent!) It is so isolating being stuck in bed all the time, I miss leaving the house to go do something for ME (a date with my husband, shopping somewhere, a coffee with a friend etc.) I go to a few appointments every week -when I can make it (acupuncture, chiro, massage etc.), and an occasional family thing, but besides that I don't really get to leave the house. I'd love to go out and have a good time, but I'm just too tired. I'm too tired to psych myself up for an outing, but I also reach my fatigue limit too fast to hang out anywhere long enough to have fun. A lot of days lately, just standing makes me huff and puff. We have a 2 story house and going downstairs to get something feels like an epic journey some days......so my bedroom is my home base. But I find something fun to do most days. My husband is such a good sport, he usually stays home with me each night and we are always binge watching some show or another in bed together. Funny TV helps us laugh together and have lighthearted moments in an otherwise heavy time. My husband is very funny and is a real feeler, he just oozes compassion....and I feel so thankful because it helps brighten everything......although it is FAR from the life either of us wanted together. How much time do you spend in bed?
What is your fatigue like? I have several different stages of fatigue. I'm learning my 'alarm bells' that tell me when I need to stop. I don't know how closely they correspond with other people's, but these are the levels of my fatigue.
1. The first one is just feeling like a need to sit down. (although, that is my constant these days)
2. Then when I hit my limit, my head starts feeling like it's caving in, my face goes a little slack, body gets weak, and my breathing changes.
3. If I push past level 2, my adrenaline kicks in and I reach a stage where I feel 'buzzy' and 'wired' but otherwise pretty good for a while. But then when I stop to rest, it's too late. I'm 'tired and wired' and can't get my body to relax for like 4+hours. It's like I've drank 15 cups of coffee and I'm so exhausted my eyes are burning and I can't keep them open, but I can't slow down my body to rest either. It is miserable and I would never go there on purpose. Actually I try to not ever get to level 2 either, I don't ever push myself on purpose. But I can go from just fine, to level 3 so fast that my head spins (and the more people or 'chatting' involved in an outing, the faster I fade). I can't go someplace and get back fast enough to ever really be okay these days. So I stay home. I really do think that my huge dip this year isn't going to be forever and that I will gain more ground again. That it is a 'down' in a constant up & down cycle. I just wish I knew how long this stage would last..... wouldn't we all love to know, right?