My Not So Normal Life and A Few Other Things.

  Let's talk showers  No, not the kind that falls from the sky when it rains. No, not meteors, but regular showers people take to keep clean. A regular person is in the shower up to 5-10 mins maybe 15 at the most. Well for someone with Lupus, MS and Fibromyalgia it's so much longer. For instance, it took me almost an hour to shower the other day. Why is this you ask? Well, I can barely stand on my own, and do things like lift my hands to shampoo my hair without being so exhausted I have to sit down.  So it begins, the clock ticking away. *10 mins gone * sitting down. Once I finally can I stand back up and commence the ritual of the shower  but wait, after *10 more mins* I need to take a breath before I pass out (literally) it takes sitting down and breathing slowly to make it not feel like my heart is going to leap out of my chest.  I look at my handy dandy Fossil smartwatch and it says my BPM is 140 which I believe.  I try to slow down my breathing, and BAM another *15 mins go

So the other day someone asked me why I sleep so much? This got my wheels in my brain turning and I thought to myself that is a very good question? Here's what I came up with! I think I sleep so much because I don't want to face my new reality. TBH this is probably the main reason along with depression. But here are a few more thoughts. -Pain-in all aspects. I am non- tolerant even with pain meds and, it's all a bit annoying not knowing when or where it will show it's ugly head. Or sometimes why it never ends. -I'm overweight now because of my medications/ immobility it hurts to move and walk if anything eats up my spoons it's definitely this. I know I need to get up and move, but when I try I struggle so hard, Then of course there's this ugly monster I fight.   Pride- Vanity  I hate what I see when I look in the mirror. I'm just ugly.  I don't have the money needed to buy the clothes I need, get my hair done, or the frickin energy to start with. I j

  I don’t understand why this life is so hard for me? Why when I get sick my body completely shuts down and my insides make me feel like I’m dying. I have always struggled like this, a common cold knocks me out for days, sometimes weeks.  I am still havocked by pain every second of the day and the only way my body can handle this is by sleeping. if I am so lucky. Did I do something so horrible that God is punishing me? Do I still believe in God?  I am failing at being a warrior, a fighter, a mother, and a wife  I feel like my family deserves so much better.  Why is the pain for me so unbelievably hard? why can’t I force my body to do what it needs to feel better? I have tried so hard to get out of bed and move, to be more present in life, to just try. I have willed myself that I can do it, only to be bedridden hours later. My body is a mess inside and out and it’s breaking me down even further.  My heart breaking and I so want to be able to handle it all but it’s not working out that w

Hey there.  I hope you are staying safe and sane in this crazy world.  It's a lot to stomach for anyone. I can't go crazy.  I already am!        Serious question? When do you tell your family that their joking around has become hurtful?  It's to the point where I feel like I am in high school again, trying to compete for their love and attention. I am 45 yrs old and feel like I am treated like a child at times. I am told that I am too sensitive and that I take things out of context, that I should just take it, and know they are playing.  Every night it's a roast the hell outta mom till she cries or locks herself in the bathroom so no one would see.  it's not like anyone would care to be honest.  I could cry for hours and no one would even flinch.  When did I become invisible, and so small that it doesn't matter if I am even around?  I am ignored when I am trying to be a mother, I am ignored when I try to let people know how I feel. I am beyond frustrated.  I hav