At least not when cleaning one room alone makes you feel like you are going to pass out. Don’t get me wrong, I hate having a dirty house, I truly do. But these days I literally cannot clean more than 1 room, maybe 2 if I am lucky, in a day. We live in a 6 room house so doing the math & considering I actually have other responsibilities along with a 6 year old boy to take care of (& also adding that some days I don’t feel good enough to even clean at all) means that my entire house is never clean all at the same time anymore. Which I hate. But I hate feeling sick & dizzy & like I am going to pass out even more, if you can imagine that. Summertime, which brings the wonderful heat along with it, makes cleaning even more fun. Especially my arch-nemesis: vacuuming. *sarcasm*
So the wonderful MonSter has taught me that having a clean house is not all that important as long as things are sanitary & not gross. Dust & the like (& bunny dander/fur) can coexist with us these days & that’s just gonna have to be ok. The clutter just makes our house look lived in, right?
So when I have the time & am feeling somewhat up to it, I crank up my music (which is absolutely essential for cleaning) & tackle what I can do before I think I might pass out & then I take a break. I am also lucky enough to have a husband that helps me out when he can.
I used to be able to clean the whole house in one day & in just a few hours but goodbye yellow brick road because those days are long gone; & I am learning to be ok with that.
It’s the worst feeling & having MS makes me feel like a burden to basically everyone close to me, especially my husband. He didn’t ask to be married to someone with this disease (I wasn’t diagnosed till long after we were married & had a child). There are so many things he has to do because I cannot do them & so many things he has to deal with. I can’t work but don’t qualify for any assistance like disability because of the amount of time I took off to raise our child, like that is even fair. My neurologist herself has told me I am in no shape to work right now but money issues, especially due to the huge neverending medical bills (yes, mine of course) make it really hard for us financially at times. I feel awful because all of that responsibilty to make ends meet ends up on hubby’s shoulders. I feel useless most of the time. My son is very understanding about mama’s “MX”, as he refers to it, but I hate that there are so many things I can’t do with him & miss out on due to this beast that I have seen referred to perfectly as the MonSter. I know how lucky I am to have such an amazing husband & son but I just wish I could give back to them more considering how much they give me & do for me.
I know I have discussed this topic before & probably sound like a broken record but it’s something that plagues me every second of everyday.
Sometimes I feel like because I have been dealt with this disease & it will be with me forever I don’t have a right to complain about my many symptoms & problems I have due to the MS. Some things are literally an everyday occurence for me (headaches, neckaches, trouble walking, weakness, extreme exhaustion…etc) so I don’t wanna be whiny & bring it up all the time but there are days where I truly feel overwhelmed by my own body seemingly working against me & I just want to vent out my frustrations. The issue there is that I don’t want to drive the people around me crazy by always complaining nor do I want them to feel sorry for me or worry about me or for anyone to think of me as the person who just bitches all the time. No one wants to be around that person.
I wish those of us with MS or any other chronic health problems had like a designated listener who let us whine, bitch, cry to them & then we could get it all out before we are around the people we love. I feel at a loss a lot because I know my husband or any of the other people close to me don’t understand & didn’t ask to be so close with someone like me who has so many problems just doing the simplest tasks. I constantly feel like a burden & so I try to keep the complaining to a minimum at least. It is so hard to do sometimes though. Especially when just taking a short walk makes me feel like I’ve run miles & miles.
The med I am on for my MS is Copaxone. I am lucky enough to only have to do it 3x a week unlike the many who have to & have been doing it everyday. I feel for you all so much. As it is I pretty much always have a welt in one of the 7 areas from my shot as they take a few days to heal normally. I have been skipping the arms for almost a year now because I couldn’t handle the giant hot red spots that would last 5 or 6 days at least each time. And those ones hurt sooo much. My favorite spot is my tummy & now that I forgo my arms my least favorite spot is my thighs. Yikes. Especially when we hit a vein! Painful! I am very lucky though because my husband helps inject me most nights which I am very grateful for.
If anyone has any experiences to share about their injections I would love to talk to someone else who has to go through this.
It is soooooooo unbearably hot today & most of us with MS can tell you that heat is pretty much our worst enemy. For years now I have always wondered why I was so heat sensitive & why I couldn’t stand anything about 78 degrees or above. My husband would make fun of me for being such a wuss & complaining when it was a nice 80 degrees (what he considers nice anyways). Well I found out why that is & why anytime I’ve even remotely exerted myself in the hot weather I have felt like I was dying. It is a truly horrendous feeling & one that unfortunately takes some of the fun away from my favorite time of year-summer-when my son is out of school & we go to the beach & up to the mountains. Instead of just being able to be filled with excitement like my husband & son I am filled with a foreboding fear of how my body will handle it all. Fun stuff.
Thank you MS! I appreciate it so much!
I have always found animals to be such a therapeutic presence & our bossy, bratty bunny Harley Quinn has been a rock for me throughout many things, good & bad, in my life. She never fails to bring a smile to our faces. Cuteness overload to help make you smile today.
every word of this is so true
After his most recent swim lesson we were on our way home discussing how wonderfully he did & h0w much he has improved so quickly when out of the blue he says, “What if I get MS?” It is a worry that unfortunately we cannot escape due to the mysterious ways of multiple sclerosis-they have yet to figure out what causes it but there is a belief it could be partly hereditary. Mind you I know of no one in my family who has ever had it so I contracted this disease in some other way, but the fact is that it may be hereditary & therefore my son could be at more risk simply because his mother has it. A fact which haunts me everyday if I am being honest.
I explained to him that it is very unlikely he will ever contract MS due to the fact that it is not common whatsoever even though the statistics themselves sound scary. Not to mention that it is more common in woman than men (lucky us-we give birth, have menstrual cycles & are more likely to contract MS). What I cannot tell my son is what I wish I could say to him so badly-that he will not get this awful debilitating disease in his lifetime because, as he points out to me, we simply cannot know that.
So here I am. I have decided to start a blog to vent out some of my frustrations, emotions, annoyances, heartbreaks & just overall experience with being diagnosed with multiple sclerosis at 31 years old all while trying to keep up with my active husband & very vivacious son who is now 6 years old. I figure it will help me deal with some of the realities of MS while also possibly finding people who are experiencing some of the same things I am on a daily basis. All while realizing that while I may have MS it certainly does not have me.