Invisible Illness Awareness Week

I have to let go of my live in assistant of over a year. He gave me independence I love and feel so good about. But he can not seem to grasp ADLs and IDLs disabilities. I do not want to let him go, but his attitude is taking it’s toll on me. Breaks my heart so bad. I know he will not want to be my friend after this. I hate trying to find people who do not understand what I am going through because “I look so good.”

I just got back from spending 8 days 7 nights in Oregon, with my sons Grandma. It was a wonderful trip, showing him where his dad had grown up, and spent most of his years (I lost him November 8, 2012, when our son was just 4 months old, but that’s a different story I might share later). It was so much fun, for the first few days. Then came the days of putting on my brave face, knowing that I would feel horrible very soon. For the last 3 days my heart rarely went below 115, and I was so exhausted, I tried my best to explain my problems, and fears, the best way I could, but I’m so used to just leaving out the worst of what I was feeling. Like this, instead of saying I feel like my skin is falling off, my heart wants to jump out of my chest, and my brain feels it might explode, on top of every joint in my body wanting to scream, I said, I have tingling uncomfortable skin, my head is hurting a bit, and my heart rate is having a little issue. I don’t know why I downplay what I’m feeling to everyone. I’m finally getting to the point where I can tell my doctors the truth, for the most part, but I still can’t fully say everything out loud. It’s like, if I ignore it long enough it might go away.

Haha.

It’s not going away. It’s not going to disappear. I finally got the new official diagnosis, and I thought it was going to be small fiber neuropathy, but it’s officially also autonomic neuropathy.

Could I have lived my life differently, and not gotten these extra Illness’? That is what I feel I have to figure out, and research, because every doctor I’ve seen, says all these extra syndromes are stemming from EDS. I have two kids, my oldest is 13, and I believe he does not have it, but my youngest who is 7, I believe does. Everything I’m reading so far is telling me there are ways to treat your body, to have better chances of not getting the diagnosis’ that I am getting, and I’m hoping my baby doesn’t. I refuse to give up hope, and refuse to stay silent about it anymore. He deserves to live his best life, and that includes his adult years.

Sorry this one went so random, but that’s me! My brain is random, and works in such mysterious ways! Here’s to hoping tomorrow is better than today, and love to all my warriors out there!

#EhlersDanlosSyndrome #LivingWithPOTS #ChronicIllness #InvisibleIllnessAwarenessWeek #SleepApnea #ChronicIllnessEDS #PosturalOrthostaticTachycardiaSyndrome #SmallFiberNeuropathy #AutonomicDysfunction #AutonomicNeuropathy #nervepain #mybodyhatesme #loveyourself #Randombrain

Multiple invisible illnesses but very real to ME !
May look fine but be struggling from within !
Please don't walk away, stay by my side in good and bad times !
#InvisibleIllnessAwarenessWeek

What do you see when you look at me?
The ever-present smile? The haircut? My adorable shoes?
What about the bruises?
I currently have 17 on my legs.
The scars?
The one that looks like a vampire bite is from a skin biopsy looking to see the extent of my nerve damage.
That rib poking out a bit too far?
Sometimes you can see them slip in and out of place when I move.
Can you hear that popping when I’m eating?
That’s my jaw dislocating.
Did you notice the clumps of hair?
I’ve been losing it for 7 years, but it’s gotten worse since I was on chemo.
What about all the yawning?
Sometimes yawning is the best way I can move air in and out of my lungs with my airways collapsing.
Or the needle marks?
My record number of vials of blood taken in one draw is 19.
Did you notice the dark circles under my eyes? The weight fluctuation? The grimace I sometimes can’t hide as I move? All the weird ways I sit to find comfort in my twisted body? My frequent absence?
What about the pain?
Can you see the pain behind my smile?

Invisible illnesses aren’t always so invisible. #InvisibleIllnessAwarenessWeek #InvisibleDisability #InvisibleIllnesses #MyNeedsMatter #MightyTogether