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Let's talk showers


 Let's talk showers 

No, not the kind that falls from the sky when it rains. No, not meteors, but regular showers people take to keep clean.

A regular person is in the shower up to 5-10 mins maybe 15 at the most.

Well for someone with Lupus, MS and Fibromyalgia it's so much longer.



For instance, it took me almost an hour to shower the other day.

Why is this you ask?

Well, I can barely stand on my own, and do things like lift my hands to shampoo my hair without being so exhausted I have to sit down.


 So it begins, the clock ticking away.

*10 mins gone * sitting down.

Once I finally can I stand back up and commence the ritual of the shower 

but wait, after *10 more mins* I need to take a breath before I pass out (literally) it takes sitting down and breathing slowly to make it not feel like my heart is going to leap out of my chest. 

I look at my handy dandy Fossil smartwatch and it says my BPM is 140 which I believe.

 I try to slow down my breathing, and BAM another *15 mins gone.*  

After I can breathe again I commence. 

My legs start to shake so bad from standing, and I have to sit down, I am again, drained of any energy I just built up just by shampoo and conditioner. Are you Serious! 

Another *20 mins are gone* 

 then it's the same song and dance, but by this time I am crying 

(because it's all too much to handle.) 

I can't help it .  as I am showering the tears are streaming down my face. 

No one can hear me because I have music playing loud. 

This is my shower ritual, no one needs to know. I'm just trying to be tough...

I am almost ready to pass out again so I finish what I can and call it a day. Mind you, this shower was taken at almost midnight because that is the time I have just enough uggg to push through a shower.

After my shower I'm being drained again 

I went and sat on my bed, bathrobe on, turbie twist in my hair, by this time I can feel my heartbeat so hard in my chest it's BPM is now 145. Just from a dang shower! 



I lay back on my pillow and breathe and find myself waking up 2 hrs later. 

Why am I telling you about my shower? I am doing everything to spread awareness including the ugly things. I don't want anyone's pity. I don't post for that at all. 

I just want people to know how much this disease takes away from us it's so much more than a flare or a butterfly rash it's the time taken from us from our families and loved ones. 

It's a loss of job security. I had to quit my job because I couldn't sit, stand, and when I stood up I just fell and had to be carried out by one of my coworkers. It was so embarrassing. That made us lose our second income so now my husband has to carry all that weight. It's just a nightmare in relationships, financial stability, your family suffers and your guilt beats you down to the point of depression.

I can't explain it, the pain involved for me and I am sure a lot of my spoonies understand.

I would love to know what your tips and tricks are when you shower. Besides a shower chair. I love to take baths but sometimes you just don't want to Amiright?

Well friends and spoonies thank you for taking the time to read and please share any thoughts or if you need to talk I am here for you. It's hard to stay strong know you are never alone.

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