I sit here at 1:22am with no hope of sleep on the horizon. Every night I pray that I get tired, I love everything about night time except thinking about getting up in the morning. I love having time to myself, I love the quiet, my own shows (no Paw Patrol!) and doing crafts without being interrupted. I also get a lot of drive at night; I want to clean, do crafts, and think of blogging ideas. I also recently started reading my Kindle every night. It helps wind me down. I then fall asleep and it’s all over…
I wake up and immediately asses the damage, is it going to be a good day or a bad day. I try to stretch but I get a twinge in my back which takes my breath away. I stand up and hobble to the bathroom because my feet are completely numb. While I get dressed I can’t bend over to put my pants on so I do the best I can which takes me twice as long.
Little man J then needs his diaper changed and of course I want a hug so I pick him up silently screaming in my head because I’m in so much pain. We head to the living room and I take my first set of pills for the day – 6 of them.
I contemplate doing the dishes in the sink, but my feet are burning so I decide that I will wait a bit until my pills kick in. Little man wants a juice so I walk into the kitchen and forget why I’m in there. I ask J what he wanted and he reminds me it was a juice. I grab it from the fridge but since the nerves from my arms and fingers are all firing at once I drop it. I think about just leaving it and getting another one because I dread bending over to get anything. My guy knows this already (at 3 😦 ) so he comes running into the kitchen to grab it for me.
I look over and see the dishes in the sink and get overwhelmed which brings on a panic attack so I take another pill. I sit to calm myself down which usually takes 30-45 minutes. I can’t think too far ahead or it will send me into another attack. I catch myself clenching my jaw (a side effect from my stress) and realize how sore it now is because I must have been doing it for a while.
I pick my phone up because I have to… wait…. what was I doing? Was I texting someone? Or setting a reminder??
If you look at my phone you will see 10 alarms (So I never forget to get up, get lana, take J to school, pick J up from school etc…), a ton of reminders – even reminders to color with L the next day because I promised I would and I will surely forget.
I grab my head in pain since I have yet another Migraine (4 out of 7 days I usually have one, I also get what’s called Cluster Migraines so I can have them for weeks at a time continuously. The doctors still haven’t gotten it under control)
Oh time to take another 4 pills and if I think about it too much my depression kicks in. My depression has gotten very bad at times… I have never thought of taking my own life…. NEVER but I have done stupid things that normally only teenagers do.
I get a glance of myself in the mirror and look at myself disgusted with what I see (I have recently been working on this and I am making progress so no worries)
I grab my to do list and decide to tackle some of the things on it. I do 6 loads of laundry, fold 4 and change the sheets on my bed. I can’t move my arms because I did too much – 4 more pills. I am so exhausted at this point too that I don’t do as much with J as I wish I could and I feel guilty about it… depression kicks in again.
I call my hubby to ask him what days he has off next week… he tells me for the 5th time that its Thurs and Fri. He is used to this as I have no memory at all. I can’t remember anything. It has gotten so bad that I have only a few memories left from when I was little. I can’t remember them and it kills me. The doctor said that my fibro is really bad which is why my memory is so bad and why I am on so many pills.
My hubby comes home and grabs my shoulders and starts to massage me and I scream. With Fibro there are certain spots that are really painful. The shoulders are one of the main spots…mine are awful and usually feel like there are 50 pound weights sitting on them.
Everyone is getting ready for bed, I get everyone into bed take 6 more pills… the hubby goes to bed and my night starts… and it happens all over again.
That is basically how it goes for me everyday. So when people ask me “how do you feel?” I never know what to say, no one really wants to know how you feel, but I also don’t really want to lie and say “oh I’m fine.” I never mind that people ask, I know that they care when they do its just a difficult question. When you have a chronic illness everyday is like groundhog’s day. Most days are bad… most. You get a few good days scattered throughout the year in which you feel amazing….those are the days that the house gets cleaned from top to bottom or the kids and I spend all day outside playing and having a great time.
Its all part of the Spoonie Life ! Not sure what that is? Just click on the link and find out. I hope it will explain a bit more what it feels like to have a disease that’s “invisible.”
Despite all of the above I am a lucky woman. I have two amazing kids, a wonderful husband that I am in love with, a nice house, two insane dogs, and an extended family (including my mama) that supports me in everything I do. Sometimes I get a little off course, but I always thank God above for all he has given me. He only gives us what we can handle right… well I hope I am doing him proud.
Thanks for all that love and support me, I hope you know how much I love and support you right back!