It’s been a rough week physically. I had a CFS/ME flare-up, which feels a lot like mono if you’ve ever had that, or the worse flu you can imagine. During these flare-ups, I run a fever, my body aches horribly, I feel too exhausted to move, too exhausted to breathe, and if I sit up or stand up long, I feel faint. Trying to do the simplest tasks is overwhelming and can make me feel like passing out, even just putting up my dishes or trying to take care of my personal hygiene.
Yesterday I was finally feeling well enough to get out and since the weather was warm, my husband and I went for a picnic at a local park. We got subs and then after eating, walked the short distance to the lake edge. As you can see, it was pretty darn muddy:
I’m glad we went, because I needed the mental distraction, but now I am really sore and exhausted from even that short bit of activity. Trudging through the mud really wore me out because the mud sticking to my shoes made my feet feel like they gained 10 pounds, and I almost slipped and fell a couple times. It probably wasn’t the brightest idea to go, but mentally I needed to feel alive again, even if just for a little while.
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.
Well, my one-day migraine from Wednesday turned into a four-day migraine that I finally had to go to the emergency room to get rid of this morning. They pumped me full of a bunch of drugs that did take the worst of it away, although I must admit I’m scared it will come back once those wear off. They did give me a steroid shot to help stop rebound migraines, so hopefully that will work.
I’m exhausted and somewhat depressed about the whole situation. I went at least a couple years with barely any migraines and then this just pops up out of nowhere. I can’t help but think part of it might be all the stress about my upcoming SSDI hearing. I try not to consciously think about it, but that doesn’t work so well for obsessive minds like mine.
I’m sure you guys understand that this will be a short post since I’m not feeling too great, but here is a picture of an extremely ugly, grumpy stuffed lion for you to enjoy:
I didn’t post the last couple days because I’ve been sick. At first I thought I was having an adverse reaction to hemp seed oil, which I decided to try for the first time Friday. I was hoping it would help my chronic pain issues, but within a few hours of taking it, I developed a horrible headache (almost migraine level) and then became really nauseated and felt like throwing up all night.
However, yesterday I made sure not to take the oil again and I still had a rough day with nausea and other stomach issues, so I’m not sure if an adverse reaction could last that long or if maybe I just had a stomach bug or something. I hope it wasn’t the hemp seed oil, because if that makes me sick, I would worry that medical marijuana might do the same, which I am still hoping to try if I can get my Ohio prescription card.
The really sucky thing about Ohio’s medical marijuana program is that they only approve certain doctors to prescribe it and it sounds like you have to go through certain organizations to get approved….organizations that do NOT take any kind of insurance and charge a couple hundred bucks just for your first visit. Almost seems like a scam in some ways. I’m doubting you can use insurance on the prescriptions themselves with a system like that, but I’m not sure. So honestly, I don’t know if I can afford medical marijuana 😦
As for my possible adverse reaction, I think it worries me even more because my mom always told me that she could never smoke weed because it gave her migraines and made her physically ill. I was hoping I didn’t inherit whatever it is that caused that reaction in her, but now I’m worried maybe I did. It would suck to spend all that money on a medical marijuana card and then find out it made me feel worse.
I spent yesterday in the ER. Always lots of fun. I was rather freaked out because I literally couldn’t swallow at times and felt like I was going to choke to death or something. I also was having chest pains, trouble breathing, and feeling like I was going to pass out. Now I get to go back to the GI doctor because they think there are probably issues with damage to my esophagus.
Still not feeling much better today. They put me on some meds that are supposed to protect and hopefully help repair damage done to the esophagus, but no relief yet. I still struggle to swallow, keep coughing, and feel like there is something permanently stuck in my throat. Eating and drinking is no fun, even the smoothie I tried to drink earlier struggled to go down. My chest, especially around my breastbone feels like there is an elephant sitting on it. Man, this sucks.
Today has been a rough day 😦 I had to get up early to go to an appointment with my lawyer to talk about my upcoming SSDI hearing in February. I woke up feeling exhausted, achy, and sick to begin with, my stomach and digestive system freaking out from the anxiety of the change in routine as they always do.
The meeting went ok, I suppose. The lawyer seems really nice and genuine, but the whole thing depressed me. For one thing, it isn’t easy to have everything that is wrong with you physically and mentally just laid out on the table for everyone to see. It isn’t fun facing the reality of my own limitations and self-perceived flaws. I know I can’t help having mental and physical issues, but it SUCKS to have to dwell on them and think about them more than I already do normally.
The lawyer wants me to try to get my doctors to fill out some forms to take to the hearing and that gives me high anxiety. I hate having to ask anyone to do anything, it is just the way I am. I have a deep fear of rejection. What if they say “no” when I ask them to fill out the forms? Then I will feel even lower than I already do. I know my doctors are caring people who try to help me and they will probably be more than willing to help, but my brain just can’t shut off the “what ifs”.
I came home from the lawyer visit, cried for a little bit, then crashed for a few hours in bed. I still feel like absolute crud, but am trying to get back into my normal routine. I am desperately in need of some self-love and comfort right now, but that isn’t easy for me to do.
I’ve come down with another nasty case of bronchitis, so I’m taking it easy, hoping the antibiotics kick in soon, and putting together bits of loosely created blackout poetry (using some magazines and comics I’ve read lately). Here are a few of these creative little bits:
Not a single one
became a hugely successful
save the seals, coins,
and animal bones.
of a terrible illegality
a large new stairway
to the mounds of holy dirt.
To the ramparts!
To let me nap in peace.
than the sword –
into thine eye.
These bits of poetry are short, random, and sometimes a bit nonsensical, but I enjoy playing with language, and even the most ambiguous ones have a sort of language musicality to me.
By: Maranda Russell
and clenched fists
accompany defiant eyes.
I have high expectations
but I avoid them all.
Sick in the stomach,
sick in the head,
sick of this life.
I would cry,
but I never
penciled it in today.
I think I caught my husband’s cold 😦 My throat feels like it is on fire, I’m running a low grade fever, and now I’ve started coughing too. So, I think I’m going to take it easy today and just lay around the house and do nothing. Maybe watch another animated movie on Netflix (this week I already watched “The Secret Life of Pets” and “Moana” for the first time, “Moana” is definitely a new favorite of mine now). I’m thinking maybe “The Emoji Movie” next.
My husband is running over to McDonald’s to get me a happy meal since they have new My Little Pony toys, and then he is going to pick me up some Ben & Jerry’s ice cream, Milk Duds, and some Halloween Oreos…so I’ll be set to sulk in my bedroom for a few days if needed. Sorry if this isn’t the most exciting post in the world lol, but this is my life…