It seems as though the popular phrase these days is "You are so strong." I
feel like I hear that all the time. I have to be honest, that phrase is making
me sick, people. Quit saying it! Ya know what? I'm actually not that strong!
I'm rather weak in the literal sense of the word. My physical therapist says
that I have weak muscles, weak joints, weak bones, weak tendons and
ligaments that attach the bones and muscles and joints, etc.
My hands and fingers are weak. I have a brace for my wrist, and a splint for
each finger. My knees are weak. I have a knee brace for both knees, and my
Avascular Necrosis is worse in both so I am just waiting for their collapse. My
ankles and feet are weak. I have to have ankle and arch supports, or achilles
tendinitis and plantar fasciitis ensue. Currently I have a hairline stress
fracture on top of my left foot from walking or standing. My spine is weak.
My hips were so weak that they have already collapsed and have already
been replaced. My shoulders and elbows are weak, leading to one shoulder
replacement thus far. I have had shingles 24 times! I'm on a 24 day course
of steroids right now for inflammation of a facial nerve from one of my
shingles outbreaks. On the steroids, my immune system was compromised
more, so now I am having yet another outbreak!
Why am I telling you this? I'm telling you this because I have several autoimmune and auto-inflammatory diseases. I wake up every morning just like everyone else does. The difference is that it takes me 30 minutes to get out of bed because I am so stiff and sore and achy and fatigued and just plain worn out to get my butt out of bed. I move very slowly for about 2 hours after finally maneuvering my crunchy self out of bed.
I take myself directly from my bed to the couch because it is too hard to do
much else. Once I take my 10-15 morning pills, I am capable of being a mom
to my 6 year old son Mick. I get his breakfast ready, his morning meds, help
with his clothes, and then we walk together to his school. I walk there and
back which is less than a mile. When I return home, I generally also return to the couch. I love the couch. I
set everything up around me that I will need for the day. I have my phone,
water, the TV remote, a snack, a book to read, something to work on, my
laptop, my pillow and a blanket.
I might have some errands to run or appointments to go to while he is at school. I might have some laundry to do. I might have to take Mick to dance class, soccer, baseball or choir after school. For the most part, I am on that couch all day except the walk to and from school and going to bed at night. I might decide to throw in a shower now and then when I get dirty too.
Now to my point...
I'm writing this because I am just so so so tired these days. Sure I do what I need to do for Mick and for my husband, but I am barely getting through the day here. My energy is at a zero. My tank is on empty. I have no extra stores. I have no idea what to do. I have tried resting all day, but it doesn't revive me. I have tried exercise, but it doesn't renew me.
If you are familiar with the Spoon Theory, I am out of spoons. I have no spoon reserves! I have not begged for, borrowed or stolen any spoons. I am just totally SOL! (I will accept donated spoons at any time however. Thanks in advance.)
I have had 10 surgeries, and never once was anyone here from my family
while I was in the hospital. Also, I have never had a visitor in the hospital
besides my own husband. I have had 3 joints replaced, 2 additional surgeries
on my shoulders, 2 additional surgeries on my hips, and my gallbladder
removed. I had 2 laparoscopic surgeries. I also have had 4 minor eye
procedures done. They are minor yes, but they still have to stick needles in
your eyeball. Your eyes are open so you see a needle coming straight at you!
It's horrifying! I had to drive myself with an infant after having tear duct
plugs placed, removed and tear ducts cauterized. The cauterization is painful
even with local anesthesia. They literally burn your tear ducts closed! It
smokes and BURNS, actually BURNS! I have had 2 epidural pain injections
and nerve blocks in my SI joints. I have had 2 endometrial biopsies in the
last two years. Do you know that they don't give you anesthesia for that?
They just cut pieces of your endometrial wall without any numbing or ice or
anything. I go every 4 weeks for an I.V. (Remicade) for my psoriatic arthritis. I always go alone and return by taxi home.
day, I remind myself to ask for help. Every single day, I remind myself that I can't do it alone. Every single day, I remind myself that I have gotten this far, and I can keep going. Every single day, I remind myself that, I may be weak right now, but if I play my cards right, I think I might come out with a good, strong hand.What's the secret? There really is no secret to being strong except figuring out that you had the answer all along. All of us who are weakened physically by chronic illnesses, somehow God has blessed us with a strong will, a strong heart and a strong soul. We have to figure that out on our own though. We have to get there on our own. For me, the realization comes every single day when I look at my son, and I understand that I am his STRONG Chronically Mommy! So...I may not be as strong as everyone thinks I am right now, but it is in my journey that I will become strong!
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