Day In The Life...

I live in Florida and we just had a hurricane go through, Irma. Luckily I am in the panhandle so all we got was a tropical storm in our area. Some wind, some rain, and a dent in the van where a branch fell on it from the tree. Weather definitely effects chronic pain conditions and I am no exception to that. For the last couple days I have had lots of muscle spams, sciatica, tingling/numbness, shooting pain, and a higher pain level over all. A bad few days so far.

Since this is Chronic Pain Awareness Month (September) I thought this would be a good day to do one of those "Day in the life..." type posts. I think it will be a good idea to give people information on what it is truly like to have a bad day with a chronic pain condition. This is how it effects me, but I figure it will at least give people a rough idea of how it might be effecting someone in their lives and hopefully it will promote understanding.

So lets start with over night, sleeping. (Sleep? What's that?!? LOL) Due to the increased pain and severe muscle spasms I was not able to try to sleep until 2AM. I had a hard time getting comfortable enough to try and fall asleep because when I shifted position the muscles in my back (just under my shoulder blades all the way down to mid thigh on both legs) tightened up and started to spasm. This causes extremely sharp and intense bolts and waves of pain to shoot through the entire area. When it first starts it is extremely intense and takes my breath away. I then have to mentally remind myself to breathe, slowly and calmly. Somewhere around 3AM or so I dozed off. I woke up a few times due to pain and spasms but managed to go back to sleep until 4:30AM. I've been awake since then (it is now 9AM). I have been alternating between applying heat and ice to the affected areas (alternating; 20 minutes on/20 minutes off/switch to the other/repeat). Neither helps tremendously but when it is like this I'll take what I can get. I am having to shift position every 3 to 5 minutes (instead of my normal 8 to 10 minutes) to try and stave off another episode of spasming. This is not very effective since I still get the spasms and sciatica, it just isn't as intense. I am currently sitting at an 8 on the pain scale of 0 to 10. I took my morning medications at 7AM. Right now I am watching vlogs on youtube.

To get breakfast I had to think of something to eat that would require minimal movement and preparation as standing and walking are very painful for me. With the sciatica going on it is also dangerous as my legs can give out without warning and falling to the floor is not a good thing. I decided to make toast because it required the least amount of standing, bending, and reaching for things.

It is now 11AM and I am still in bed shifting position and alternating heat and ice every 20 minutes. I've also done some very gentle stretching to ease muscle stiffness. I am having to shift between sitting and laying down every 5 to 10 minutes. I can go 10 minutes laying on my right side, but only 5 minutes sitting up. Every 5 minutes sitting up I have to shift around and change which way I am leaning (left, right, forward, back against pillows). My left side is the worst and I can't lay on it at all. This is very annoying shifting around all the time. I'm still at a level 8 on the pain scale but am grateful that it is not getting stronger and am hoping it stays this way (I don't think it will as I have to pick my husband up from work this afternoon). I keep thinking of my mother telling me, as a child, when I was restless "Do you have ants in your pants?" and it makes me giggle.

It is now 6PM. I slept from 11:30AM or so until 2:15PM. Was a restless sleep and I woke up a few times with the muscle spasms. Back to alternating heat and ice. At 4:30 or so I went and picked my husband up from work, which hurt a lot, but it felt nice to get out of the house and into the sunshine. Came home and ate dinner which my daughter had cooked. Now, while alternating heat and ice I am going to do a stitching hangout to chat with friends and stitch for distraction. Sometimes it helps distract from the pain but even if that doesn't happen, it always lifts my mood to be chatting with friends.

It is now 9:47PM and just got off the stitching hangout. Made good progress on my project which can be seen on my stitching blog. I continued to alternate heat and ice during the hangout, shifting positions as needed as well as getting up to walk around and stretch my muscles out. My pain has been pretty steady at an 8 all day, but I am grateful that it didn't go higher or hit a pain crisis (level 10). I really didn't want to be curled up in bed and crying from the pain.

Now I will continue with the heat and ice while I watch some stuff on Youtube or Netflix/Hulu until I am sleepy, then I will try to sleep. I don't know how much sleep I will get but am hoping I get more than a couple hours. Lack of adequate sleep does not do good things for my pain, it also makes it harder to mentally deal with the pain.

That's pretty much my day today. My hope in sharing this is to help people understand what it is like during a bad day. As well as to show that being home a lot due to pain is not the fun, relaxing day off that people think it is.

Cranky

Constant pain makes every day a lot harder than it should be. It makes every task take more energy, time, and effort than it should. Yet those of us who live with constant pain do our best, every minute of every day, to do as much as we can and to be as patient, kind, and nice as we can. We fight constantly against the crankiness that pain makes a person feel. Yet, no one recognizes that for us this is a struggle we have every moment of every day. For other people it is an occasional struggle to not take out their bad moods, difficult days, or what have you on other people. For others, they are starting from a place a patience and a good mood. For those in constant pain, we don’t start from that even space, that good place..no. We get to start our days from a space full of pain, exhaustion, mental and emotional depression and rise above all of that, to just barely attain that more “normal” space. Once we reach that more normal space we then have to fight, constantly, to not slide backwards out of that space and instead to build upon that space and maybe (if we’re really lucky that day) reach a place of a good mood. We sadly start our days two rungs down on the ladder from healthy people.

Yet…if we do snap..even just once we get told “you’re always so cranky!”

If we don’t respond with the right amount of enthusiasm or excitement (or other emotion) that another person expects of us we hear “You’re always so negative!”

We just can’t win. 

Discovering What's Missing

While lost in that darkness you lose yourself and your life, which includes everything you normally enjoy. You stop caring about those things, doing them feels empty or like it takes too much effort. Along with losing my desire to stitch I also lost my desire to read.

Now reading has been a constant companion for me, a long with writing. I read books constantly since I first learned how to read. I remember as a child sitting in the back of my closet, yes behind the clothes, with a flashlight and reading. I did this in the middle of the night and hiding in the closet (sometimes) was to keep the light from showing so I wouldn't get caught because I just *HAD* to know how the story ended. Everywhere I went, I brought a book. They were my friends for many years when I didn't have friends.

Yesterday Ron and I went out for dinner, something we haven't done in over a year. After the meal (which was great btw!) we went to the book store. The last time we went I remember just rambling around not finding anything of interest, but last night I was interested. With a bit of help from an employee I found some books I wanted. Stephen King's son (one of them) is a published author as well. He goes by the name Joe Hill and he had 2 books out that I had not seen before, so I bought them. (I already had his other 2) When we got home I peeked at them and chose one to start reading, NOS4A2. It grabbed me within the first couple of pages and I LOVE when a book does that. It grabs you and takes you someplace magical and wonderful.

Feeling that again made me realize how long it had been since I actually read a book. I re-read books and enjoy them every time. At least, I used to. I thought back and it took a while, but I think it has been well over a year since I read a whole book, either a new one or an old and much loved one. This just blew my mind.

Me? Not reading?

Reading had always been my escape, my comfort, and my savior before. Stories helped me deal with so many stressors and depressive episodes before. Why was this time so different? I don't know but it certainly was different.

I read for HOURS last night! I devoured the words as the images filled my head and just enjoyed every bit of it. I finally dozed off over the book and when I woke up after just a few minutes I did what I promised I would ad put the book aside and tried to sleep.

I wasn't kidding when I said I spent most of my time over the past couple of years doing nothing except staring at stuff on the internet (sometimes good stuff, sometimes stupid stuff).

It feels good to be doing the things I enjoy, and enjoying it, again. But I am worried. Will this period of being awake just last a couple weeks, then go away quietly like the last couple I had in the past 3 years? I hope not, I really do.

(BTW there is good news about my chronic pain. Turns out hypothyroidism can cause pain. My thyroid is better balanced thanks to medication and in doing so lots of symptoms cleared up, and the intensity of my pain had dialed down a bit. I am back to being able to stand for 10 or so minutes. Eventually better things will be written about but right now I'm writing out what my brain is focusing on and it seems to be focusing on noticing how badly this depression affected me.)