This sucks. This really really sucks.
This is making me insane. Insaner. More insane.
What is *this*? It’s my health. Specifically, my inability to sleep. And most specifically, my back. My back which feels like a migraine, or a tornado, or a cyclone, or some other horrible act of nature has taken up residence and refuses to leave. Not for nothing. Not for a $70 prescription pain cream, not for 1/2 a tube of $8 arnica, not for $45 prescription pain meds, or OTC pain pills, or heavy duty prescription painkillers. Not for epsom salt baths, or massages from hubs (tho they knock it back a bit), or visits to the chiropractor (ditto; but I can’t afford to go see him every day).
I’ve now had X-rays done, and an MRI (183 images!). And what do they show? My wacky scoliosis bends, which I already knew about, and could have been treated when I was 15, if only I’d been treated. But I wasn’t. They show arthritis, and minimal bulging of some of the discs, and mild degenerative disease. Nothing to explain the severe pain I’m having. (I’d show you an MRI image, but my Mac can’t read it, and the one computer we have that can, doesn’t have screenshot software.)
The back pain leads to insomnia, which also leads to insanity. Trust me, I know. And I’ve tried everything for that too. (The insomnia.) (Well, the insanity too, for that matter.) I’ll lay in bed for hours, literally hours, until I just can’t stand to lay there anymore, awake. So I’ll get up, and putter on FB, or try to read, or (more likely) cry. And then I’ll be up for 24 or 36 hours, and begin to suffer sleep deprivation.
Sleep deprivation is a strange, strange thing. For me, I start feeling woozy. My limbs feel disconnected. I feel nauseous. My eyeballs feel dry. Everything is either too loud and too close, or too quiet and too far away.
And the best part? Even beyond exhausted and sleep deprived…. I still can’t fall asleep! Until my body just can’t stay up anymore, and I crash for 24 hours. Totally against doctor’s orders, which are to try to get back on a normal sleep schedule, but I can’t seem to, no matter what I do.
Vicious cycle. And I’m tired. I’m sick and tired of being. Sick and tired of being sick and tired.
In “good” news, a few things have changed since I wrote my “damaged” post. My new doctor is great. They listen, they respond to questions, they aren’t dismissing me because the MRI doesn’t show anything acute. They will work with me until we figure it out.
Thanks to them, at least I now know what is wrong with the rest of me: in addition to everything else, I have chronic Epstein Barr (EBV) virus, adrenal fatigue, and some nutritional deficiencies, as well as genetic abnormalities. (Thankfully, not Lyme, not thyroid.)
The EBV is so bad, my numbers are way off the charts: on two tests, the normal range is 0-18, and my numbers are 127 and 480! No wonder I’m tired and hurt all the time! (EBV is a cousin to mono, which I’ve never had, as far as I know.) I’m now taking some new medications and supplements. Which are helping, some, but I still don’t know how I’ll physically feel from day to day.
The storm on my wedding day.
Mentally? I’m low. I’m down. Doing even the smallest activity – like a load of laundry – wears me out, which makes me feel worthless, which feeds the dark cloud of depression that’s following me around. I mean, I’ve been paying my own way since I was 14 years old, and I can’t even sweep or clean dishes? It’s really really difficult to separate me from my body, from my health. It’s really really easy to fall into the “I can’t sleep like a normal human being ohmygodwhatswrongwithme” mentality. And stay there. Even tho it’s just my physical self that is broken. (Okay, yeah, my mental too, but that’s a separate issue.)
Since I can’t seem to find something uplifting to write to end this post, I’ll leave you with what my friend Phyllis sent me (who has health issues and pain of her own):
Instead of “being sick and tired of being,” accept that this is your reality. Do not let the pain keep you from being you, keep you from enjoying all that you can enjoy, keep you from celebrating all that you can do despite the pain.
I may not be happy with this new reality, but I’ll try accept it. As for being me? Everyone else is taken. 🙂
Thanks to everyone who has donated thus far to my gofundme campaign, or shared it. It helps ease my depression/anxiety over money.
I feel so bad that you still feel so bad! At least you have friends who love you and feel sad when you feel so awful. I hope and pray that you will soon start feeling better. The Epstein Barr often runs its’ miserable course and then dissipates which I sure hope happens soon for you! Love and kisses❌⭕️❌⭕️
I hope EBV goes away soon, too…. but with my high numbers I’m guessing it will take a few rounds of meds to kick it.
Thanks for your ongoing love and support!
Love you!!!
I feel for you, I really do, after last year when I had discs in my neck (vertebrae behind the throat not the back of the neck) slip and trap a nerve causing screaming pain into my right side, and arm down to my hand. It happened twice too, once in April, again in July (first night of our holiday in Italy) – the second time it was two discs slipping. Both times took 7-8 weeks before the chronic pain would subside. Pain is so exhausting. But the lesson? let it all go, the world won’t end, you won’t be worthless, let others pick up the slack and see that you are supported. And also, the other lessons, even if you only achieve one thing a day, you will find that it is enough. That is what I found – even if that one thing was doing the washing-up. I actually found that everything still got done. I learned to let myself relax and ‘be in pain’ so to speak, do what my body was asking me to do.
On a side note, my husband had lower back pain caused by a narrowing of the canal, trapping the nerve in his spine. I assume you have looked at that? he had a very successful (painfree) op too.
And once you get on top of all the other conditions you might actually find that they had a lot more to do with it than you think.
My thoughts are with you.
Thank you Purple Queen. That is definitely a lesson I need to learn: that it’s okay to just do what I can. I *am* doing what my body asks, even if it frustrates me, and even if I feel like I should be doing more. But I can’t. So, I’m trying to be okay with what I can do.
The MRI doesn’t show any nerve trapping, but who knows. I’ll ask my doctor to verify that it not the case.
And yes, I know all of my conditions are related, but I can only tackle one at a time. Otherwise, overwhelmitis sets in……
Thanks again so much for your kind words. I hope your pain is better.
I don’t know what you’ve tried, so maybe I’m making a useless suggestion, but I’d rather say it, and find out you have tried, than NOT say it and later find out you didn’t….
I had hideous back pain when I was pregnant, basically from my pelvis falling apart too soon and much farther than it’s supposed to when pregnant – the pain of this particular condition (SPD) is quite excruciating and affects the legs, groin, hips and upper and lower back. I couldn’t sleep, so I hear you. I would wake every 1.5 hours and need to roll over because I was in so much pain (which was a half hour exercise) and eventually would get out of bed early because I couldn’t sleep anymore.Because I was pregnant, I couldn’t use any medications stronger than OTC painkillers, and NO anti-inflammatories at all. I say this so you understand the severity of what I suffered, so that I can give some context to how bad it was, and the fact that the solution actually helped – and it was a pregnancy pillow. BUT I tried many different pillows, and the kind I specifically recommend was a giant horseshoe pillow – so big that if I rested it around my shoulders, it hit the ground. It didn’t make things perfect, I won’t say it did, but it made it more TOLERABLE. Maybe you have tried, but if you haven’t, see if you can find something like this – it MIGHT go a little way to easing the misery. I still didn’t sleep well, but I slept well enough to hang onto my sanity.
Hanging on to sanity is a big goal of mine. I recently replaced my pillows, and it helped… until I smashed them into oblivion. A full body or pregnancy pillow might help. Certainly it’s worth trying.
Thank you so much for posting your thoughts. I greatly appreciate it.