“What makes the desert beautiful,” said the little prince, “is that somewhere it hides a well…”

Dear friends and other interesting creatures,

I have readers, loyal and long suffering readers that have been around 20 years next year (party?), and when I don’t blog, they text, email or whatsapp me messages to ask “Everything ok?” “You ok?”You gotta love it, right?

Thank you for knowing me well enough not to phone me. No idea however why I have not received flowers, cupcakes or chocolate…. although to be perfectly honest, if you can deliver low carb meals, snacks or general groceries to my house I will be forever grateful. #Smile

Everything is OK. I am permanently completely exhausted. Not tired, not need a break, not take the day off… It’s a much more intense level of EXHAUSTION. Although in all honesty, I do believe @SirNoid and I are in need of a serious holiday.

It is on an I can’t deal, I can’t think, I can’t remember,  I can’t reason, I’m too sore, it’s too much, please help me, without me asking, kinda tired.

Naturally having very close to no iron in my body, does contribute towards my levels of exhaustion.

It is VERY unpleasant and I’ve really fallen very much out of love with having no energy. None. Physically. Mentally. Emotionally. Medically. Every level I may have skipped, please include it, and tick that box.

December and some of January, I was in severe pain, not coming downstairs, just staying in bed, “wish me luck as you wave me goodbye” kinda pain. Christmas, New Year is all a blur really.

I felt very aware of how scary or helpless this must have been for @SirNoid, but also for our 15 year old son Douglas. I think it was one of the first times Doug saw me mid pain attack, crying, asking @SirNoid to help with small things. Pour water, help me down the stairs, covering my legs like I’m 104 years old because the heat and the little pressure helps the pain,  while other times having any fabric touch my skin0 is hell. It is very confusing for all of us!

@SirNoid like many, expresses his helplessness and wanting to make it better, in getting angry, … but I’ve come to realise I don’t know who to direct my anger at. This acceptance bit is a bitch. I’m nowhere near accepting any of this.

I feel excessively exposed and vulnerable… Chronic illness has stolen from me, my husband and children which leaves me with more pent up anger.  Yes, it has been suggested a bit of counselling may go a long way.

I saw a new Rheumatologist &  Specialist Physician this past week.  For someone with “ailments”, I actually do not enjoy going to the doctor.

She was very proper and I liked that she saw ME, and spoke to ME as a person and not a number. The consultation was all consuming and as she predicted by the time I was done,  I felt a small tractor may have driven over me.

She has requested previous documents from other doctors and off course, ran more tests. She wants to compile a time line and see which of the illnesses is doing what, and seriously attack the anemia and find out why my body doesn’t hold onto iron.

The Fibromyalgia and Ankolysing Spondylitis can put on quite a show I tell you!

Looking at my anemic self, she took me off certain meds and gave me more pain meds to take until we have a plan of action.

Grown-ups never understand anything by themselves, and it is tiresome for children to be always and forever explaining things to them. –  Le Petit Prince (1943)

I don’t know the answers, only to try every day . Sometimes successfully and others not.

I wonder if anyone truly knows how much goes into pretending I’m feeling well?
image
I wish you enough,
Wenchy

Advertisements

6 thoughts on ““What makes the desert beautiful,” said the little prince, “is that somewhere it hides a well…”

    • I’ve been told not to expect to feel better, but perhaps just better at managing? … It will be okay, I still have great days in between 🙂

      Like

I'd love to hear from you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s