A typical day in my life: Wake up, if I slept. There’s grogginess from night time meds and injections. There’s fogginess if I didn’t – what day is it, what time is it, where am I? If it’s bad enough, who am I? I figure all that out and think about what I have to do that day and if I have enough spoons to do it.
Move to test out my body, see what hurts the most and figure out how to get out of bed without falling. Figuring out how to do things without falling is currently my biggest struggle with my MS. I also have some other chronic illnesses that decided to buddy up with my MS. This whole process can take as long as fifteen minutes. It’s mostly psyching myself up to get up. You can do it! You’re stronger than you think!
Then I get out of bed, usually. Try not to scream in pain, sometimes I can get up quietly, but sometimes I just have to make a little noise.
Next up, shower! Sometimes it’s the worst part of my day. Oh my goodness, the pain! Showers can cause my vision to go blurry and my speech to get slurred. A bath isn’t much better. It’s torture trying to get out of a bath tub.
Then I have to lie down to recover from my shower before I can get dressed. Putting on pants is a struggle when you can’t bend a leg. I’ll get my legs all twisted up funny in my pants and fall. Shoes and socks are a struggle that have to wait til the last possible second.
Breakfast and meds are next. I try not to choke on either of them since I have swallowing issues. Then I make moves to get out the door for work, if I can. I’m blessed to have a job willing to deal with my medical situation. I know many people aren’t so lucky. I deal with my work day and all the struggles it brings. My job is physically demanding, and often too much for me to handle. It’s usually during my work day that I realize my pain management skills need a whole lot of work. Funny time for it to sink in, huh?
After work, I recover from my day, usually with a blinding headache, burning and tingling legs and spine, and if I’m lucky, I didn’t fall or choke too badly. Sometimes I try to spend time with family and friends, read, watch movies, and you know, just try to be a functioning member of society.
It’s all just a balancing act. I think my point is that I want people to know that chronic pain sufferers spend most of their time in horrible pain and exhaustion, and sometimes we don’t seem like much fun, but we’re still human. Just like you. Support us, please.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Ellie! What a daily struggle you face. My heart goes out to you…. I cannot say I know what you feel but I can empathize with you. Your story has such heart and gets to the root of chronic illness and pain. We all need to be reminded of this and brave individuals like yourself. I am so proud of the woman you have had to become. Find strength in this group of people who care. All the best to you Ellie. Hugs