My entire body feels like it has a migraine. I’m in so much pain today. My back is STILL shot. I thought after Pilates yesterday, my back would feel better, but I can’t seem to get ahead of this. My fibro pain is almost always first prominent in my hips, so I’m pretty sure that is why I’m just stuck in this cycle. The daily migraine also hit REALLY early today, and I was struck down by about 11am, when I woke up at 10am. Ugh. I have been lying on the couch, with the room dark and the TV on VERY quiet just because my ADHD makes me really bored if I’m not doing anything at all. I finally had to call Dan at work because the waves of pain were too much, and then came to the realization I absolutely had to take Tramadol and Excedrin (an hour apart for my poor stomach). I had buttered noodles and Ensure for lunch, and my stomach is still killing me despite Zofran. No idea if it’s the medication or the migraine or the pain or a combination of everything or something completely different. I can barely think and I feel horrendous. I’m so sick of lying on the couch. I’m so sick of headaches.
I spent today in one of the worst flares i think I’ve ever had. My pain put me into a daze; functioning was almost impossible. It was as if I was trying to listen to the radio inside a tunnel. Even my vision was screwed up. When I my first dose of Tramadol for the day, it didn’t seem to work at all. Well, it made me nauseous, but the pain was doing that too. I’ve had a horrid day. The second dose of Tramadol worked a bit, and the vision improved a little.
Hopefully, I can get a little sleep and my Pilates class tomorrow will help instead of hurt. I want to function again!
A little while ago, I read this post on HuffPost:
Grieving the Life I Once Had
by Naomi Sakin
(I actually got there from Dysautonomia International‘s Facebook page.)
Facebook is really the only way I get any of my news. The only news source I follow directly is National Geographic, and that’s primarily because I have admired their photography for as long as I can remember. Anyway, that’s off topic.
The article, is heartbreaking. It’s heartbreaking because it’s real. So devastatingly and painfully real. You don’t find out what she has until the end, but it doesn’t matter. I think anyone with a chronic condition can relate, especially one that you weren’t born with, or that you were born with that didn’t get diagnosed or show up until later in life, or one that changed as you grew, or one that is progressive that suddenly throws you curve balls that alter your day-to-day. Really, anyone. Anyone that no longer can do what they used to.
Take caution reading the article. If you are fragile, you will cry. I teared up, but luckily I’m not doing too badly, mentally, right this moment so I didn’t lose it. Yesterday, I would have flat out bawled for hours.
I am kind of proud as to what my unconscious and fingers decided to add to my Facebook share and wanted to share it with you:
The life we once lived gets torn from us in an instant. The life we once lived gets replaced by pain and pills. Still, we are somehow expected to carry on. We adjust, and we move forward.
– Elizabeth Bulfer
Sometimes, we don’t know how we move forward, but we always seem to move forward. That’s why I started this blog: to move forward, to remember to always move forward, to give me a reason to move forward (if only to make one more post), and to remind others to move forward.
Together, we can carry the enormous weight of these illnesses and our grief.
Together, let’s move forward.
Featured Image from the article
So I wrote this post just after 4am last night, on my phone, originally. My phone and WordPress are NOT friends and it deleted it apparently. This happens a lot. Ugh. So I will try to rewrite it now that I’ve noticed.
Overnight, it appeared that my back healed because I woke up on Friday morning feeling almost “normal” again. My back was sore, sure, but it definitely wasn’t anything near the severe back pain I was experiencing on Thursday; I wouldn’t even really call it “bad pain” let alone “severe pain.” I took some Aleve and was careful, but carried on with my day. By Friday evening, I felt pretty much 100% and barely noticed my back at all.
Sometime last night, I was woken up by pain in my right SI joint (sacroiliac joint). The pain was intense enough to wake me up, something that doesn’t happen often, but was something I’m familiar with. It was the pain that comes with the joint locking up. Sadly, locked SI joints are common, especially in the right. Once I identified pain, I stretched in an attempt to resolve it, and went back to sleep.
Yesterday was absolutely exhausting. I slept horribly because of nerves, so I was already exhausted when I woke up to get to my 9:50am appointment. Well, and some of that was due to my odd inability to adjust to daylight savings time (for those that don’t know, in spring we move our clocks forward one hour, and in fall we move them back one hour… not every state does it, and it’s an antiquated concept we just haven’t abandoned)… normally, I adjust just fine, which is why I say it’s an “odd inability.” At 9:50am, I had my neurology appointment, then at 3:30pm I had an appointment with my ENT. In between the appointments, Dan and I went to Sam’s Club for some prescriptions and garden stuff. The ENT was really behind, so I actually didn’t leave until 5pm. Needless to say, after that, I was so exhausted I didn’t do anything at all the rest of the day.
On to the neurology stuff, the real reason I know ya’ll are reading this post 😛
First, he listened to all my complaints and asked some basic questions. Then he pulled up the MRIs and showed them to Dan and I. MRIs are SO COOL!!! It was so interesting getting to see what was happening inside of me and what I looked like in so many different layers. He showed us the brain one (from top to bottom and then from side to side). My brain is 100% normal! This is fantastic news. My headaches are also not due to Chiari malformation, which is a condition where part of the brain is protruding from the skull into the spinal canal, thankfully. Then, he moved on to the scan of my neck. Click here for the results
Over the years, I have surprised myself by being able to continue on past what I thought was my limit. It really is amazing. I don’t really know what the alternative is… I guess crawling into bed and never coming out again? Trust me, there are definitely days where that is all I want to do, but I have two lovely little kitties that require feeding and loving.
This neck/shoulder/back stuff, however, seems to be pushing it. I think I finally found a limit. A hard and fast limit.
I’ve been debating posting this because… well, because. This is going to be a very frank discussion on hitting limits and depression. I don’t like to discuss my depression, at least not the part of it that’s active. Depression tends to gain a lot of pity, and I hate pity. Depression is a part of who I am, it’s something I live with daily, it’s something that is always going to be a part of me. However, depression does not define me, and usually I have a pretty good grip on it. Usually.
Yesterday, especially last night, I was in a lot of pain. I was in so much pain that I couldn’t get to sleep until after 4am. Obviously, that meant there was no way I was going to try to wake up at 6am to get to my classes.
I slept until after 11am, and I am not really feeling better. My neck really hurts, which kind of makes sense after the MRI results, and my entire back hurts. The nerve pain in my right arm refuses to go away, and it will no longer pop (which would give it temporary relief at times). There is now nerve pain in my left arm that won’t go away either. My head is killing me (for two days). And, on top of everything else, my hips hurt.
I don’t really know why this is happening… but I suspect it might actually have to do with my neck. My neck and back pain and stiffness have been getting steadily worse for weeks. I’d always written the neck pain off as being from weak muscles and bad posture, so I never thought anything of it. Apparently, I should have mentioned it at some point. I’m wondering if my recent uptick in pain could be due to something in my neck getting worse? I guess I’ll find out on Tuesday (I had the wrong day, but the right date, in my head). Hopefully, the results won’t be anything bad…