Sadly people with chronic illness do this all the time. We do it because we know others don’t REALLY want to know how we REALLY feel. We know when you ask us, “How are you?“ That you don’t want us to get down to the nitty-gritty. The answer you want is the one we give, “I’m fine.”
Let’s face it that’s the easiest answer to give. I’ve literally watched peoples eyes glaze over when I do tell them how I REALLY feel. When that happens I usually just stop talking and ask them how they are. Trust me, they love to talk about how they are. And that’s OK. It’s human nature.
I know, great title for my blog. Haven’t blogged in a bit and here it is, in your face…fuuuuuuuuuck!!
You may ask yourself, ‘Why?’ I’ll tell you why. It’s now after 11pm and I wanted to go to sleep. You know, lie down, get comfy, sleep. NOT! After 4 minutes of trying to lie down I gave up. I cannot seem to get my legs up on the bed. I get one up the other slides off. I pull on my jammie pants leg and my hand cannot hold on or lift my leg. Now I could scream for someone to help me, but they are all asleep and have to get up early for work and school. Hubby is on the pullout sofa as he snores so bad he wakes me up all night. So, I’m sitting here with tears rolling gently down my face as sleep is not coming yet. Even if I get my legs into the bed it take me forever to get into a position comfortable for sleep. Once I lie down I have to pull each leg up in a bent position or my lower back hurts. As it is, if I do not sit in the right spot before I try all of this, I may end up too high or too low on the bed. I am not able to ‘scooch’ into a comfy position. I get one shot. I guess I’m lucky, as once I do finally get comfortable I’m ready for sleep, as doing this easy task takes all of my spoons. Just getting into bed is a fucking chore and it pisses me off. It’s not fucking fair!!!!!! And don’t tell me it could be worse!! It’s going to get worse so shut your mouth. And don’t tell me it could be worse, it could be cancer… this IS my Cancer!!! It has and will continue to take my life from me. Just in a slower mode.
February 8th, marks the 2007 death of my MS partner in crime, Tina Richardson. Her progressive MS killed her. She got caught between a heavy power chair and bathtub and slowly suffocated to death, alone and I’m sure frightened. She could not move and could not scream. So, do not tell me no one dies from MS. They do every fucking day. If she had not had MS she would not have been in that position. I know others that have passed away due to pneumonia from being immobile and the MS basically killed their lungs. Tina was only 40 years old and my friend and I miss her every day. So fuck you and your,’it could be worse!’
As of this moment, it’s only going to get worse for me and I’m petrified. I am in a wheelchair 24/7. I am tired, fatigued 24/7. I run on fumes every day and try to be funny and crack jokes. I hide behind a smile and most days I wish it would all just end. I have pain 24/7, incontinent at 46 years young. Migraines, weight gain, unable to do the simplest tasks. The next time you feel the need to bitch about running errands, doing the dishes… be glad you can run errands and have the strength to do the dishes. I would trade you in a hot second to be able to do all those annoying tiresome chores. The next time you take a shower, thank your God you can. Even taking a shower is a chore for me and after I usually need to sleep as there goes some more spoons.
I try to keep the pain to myself, me feelings, my MS. This is my blog, and you can read or not. Tonight, all the lil things going on in my life, and then the tip of the iceberg, not being able to just get into bed, hit me all at once and hard. Seven months, still no bathroom finished, haven’t even seen them in over 2 months. Promises to here then no show, no call. Losing more leg movement and the list goes on… depression has hit and it has hit me hard. Will I make it through this one… Hell yes! I always do. I’ll find my inner strength and pull my boot straps back up and move on. But, now and then I need to let go, and let the idiots know to watch what they say. God help them if they ever had to deal with a real illness… my comment to them will be, “Hey asshole, it could be worse, you could have MS!!!”