As you guys that follow my blog know, I had a really rough MS day yesterday and the day prior. Today wasn’t so bad, except for some dizziness,losing my breath and the normal spasms blah, blah, blah This past weekend was jammies and slippers for the most part. I did get out one day and had a good time. But it did end with more of the same. Not being negative or looking for pity. I’m pretty good about willing myself out of a funk as you all now. Like I’ve said before, this is a conscious effort. Yesterday was rough, but I made the most out of it that I could.
I got up, showered, dressed and did my make up. I did a live FB video that was fun, even if I was awkward and nervous. It was my first one and I didn’t want to make an ass out of myself in my chronic illness support group. It’s fairly new and taking off really well. I didn’t want to ruin it’s early success by putting my foot in my mouth. I tend to talk without thinking at times. This can be an issue and a little embarrassing.
The spasms and malaise continued through my day yesterday. When I go through a rough couple of MS days it tends to make me cranky. I was still positive, just had a lingering feeling that something feels off the past couple of days.
My hubby came home, I tried to tell him things, ya know normal conversation. I was having a hard time thinking. Cognitive issue suck! I looked ok, but my brain told another story, as did my speech. I was struggling for words getting frustrated and just stressing MS. This is NOT a good thing. Stress leads to a flare up, it’s very much a snow ball effect. I do my level best to stay clear of stress.
I have pseudo flares sometimes. Pseudo flares are minor or even false flares. Can’t go running off to the dr. for steroids every time that happens (even if I do love them, because they give me a false sense of well being).
Steroids lead to bone density issues as well as dental issues. I love my pearly whites, so I’m very careful not to do too many steroids. I usually wait it out, to see if my feeling bad is a legit flare or a pseudo flare.
I felt pretty damn good today (with the exception of some dizziness and being winded on occasion). I did another live video, even dusted the house and vacuumed.
Four pups means I vacuum daily. If I do nothing else it’s vacuum. Even when I feel so bad that I don’t shower I or Lance vacuum the house.
So I felt pretty good. Still having a hell of a time with some cognitive issues etc. That settles it, I called my dr. for oral steroids. Hopefully that helps. Not really feeling I.V infusions, so I’m going for oral.
I call my dr. and had a hell of a time relaying that I needed steroids called in. That sneaky bitch MS was at it again, making me feel like an ass on the phone. I was able to finally spit out my request to have them call it in.
Back to yesterday, as the evening progressed I asked my husband his opinion. See… I used to have more good days than bad days. These days seems to be the opposite. I asked his opinion. He said “yeah, since this last flare it has changed. But you’re better than you was when the last flare first hit.” I love him, he tried to line that cloud with a silver lining. He’s a good man. So now it appears I was right. There have been more bad days than good. My memory has been failing miserably so I can’t depend on my own recall of past events. Kind of hard to gauge when you can’t remember things from one moment to the next. How bad does that suck? Pretty bad. I was teary eyed by the time we ended that particular conversation.
The thought of not getting better is unnerving. I’ve alway’s been really good about rehabbing. This last doozy took more than the others. I know I’ll still keep on with the keepin’ on. But I know it’s different than it was. The ever optimist I’ll keep hoping and working towards getting back, but in my heart of hearts I know this is just progression of the disease. I am a realist after all. Still positive, because I have it better than some.
My sweet hubby took off tomorrow so we can go see the blood red super moon. I’m excited. We have plans to go to breakfast and then play golf after viewing the moon. The last time the moon was the way it will be tomorrow was 1866. How freaken cool is that? I admit I’m not sure I can hang on the golf course because I’ve been under the weather but I’ll sure give it a shot. He wouldn’t hold me to it if I didn’t want to.
Hard conversations like the one me and the hubby had are important. If you do anything when having an issue, please reach out to your loved ones and friends so you can get things off of your chest. Even though I wasn’t real happy to have confirmation of my suspicions, I was glad I wasn’t making more of it in my head than it was. It was reassuring to have my hubby to talk to and unload my feelings.
This is a tough disease we need people in our corner. Don’t be embarrassed to tell family or friends of your concerns they can help get us through.
I’m sharing this info so I stay true to my blog. I am not one to sugar coat. I stay positive but I also keep it honest.
So I leave this with saying I’m going to do my level best to have a fun day tomorrow. Life is short, live it and enjoy it. Keep it positive, it will see you through. Tomorrow’s a new day and will be a good one. Today was better than yesterday so it’s feasible tomorrow will be better than today. With the steroids coming tomorrow, who knows, I may be kicking ass and taking numbers within a week 😜