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Sending Gentle Hugs 🤗💜🦄

It’s been so long since I’ve written, but it feels like home right now. 😊

Anywho, a #fibroflare appeared out of nowhere yesterday and today it’s been #BrainFog city 🤭.
I decided to love myself more and after a whirlwind morning I’m
Sending myself and all #Spoonies this.
Live long and prosper. 🖖

2 reactions

Sick leave -guilt?

I’ve been dealing with chronic illness for a long while now that has largely been invisible. Today I got approved for sick leave and will be taking a break to focus on my physical and mental health for a couple of weeks. I feel weirdly guilty about all of this, but I’m trying to unlearn those feelings and look after myself. Being uncomfortable for so long really takes its toll and it’s ok to take a break. #MentalHealth #Spoonies #ChronicMigraineSyndrome #Eczema

20 reactions 6 comments

A quality question #PTSD #ChronicPain #ChronicIllnessEDS #MentalHealth #Spoonies

What is something that is missing in today's world that you had growing up?

I feel respect is largely missing and is not taught at home like it was for me growing up.

26 reactions 7 comments

Counting my blessings #PTSD #chronic pain #ChronicIllnessEDS #Spoonies

This might be long, if so I apologize. I asked my best friend to drop me over at my son's while he visits his family, which he did. I took my son and long time gf a new phone that I had activated it already. They were renting a house with another couple. That couple had his grown son and his fiance move in because they needed a place. That started this person moving in or that one moving out. Not sure why but rent wasn't getting paid so they ended up getting a summons to court (I believe there were 7 names listed as living there). My son and his gf are the only ones who appeared. I mad sure and took them. The judge gave them two weeks to vacate. My son was like, why did we go since we still got evicted. I told him "you went to hold yourself accountable. That's respectable!" When I was explaining to mom she asked how much their rent was because she was going to offer to pay it. It was to much. So today when I got to their house my son was just getting to leave to take another load to my storage that had lots of room using his bicycle and a bicycle cart. It was 36 degrees and dropping. I texted my friend and asked if I could borrow his car so my son isn't getting his stuff in storage this way. Since they have to be out by noon tomorrow he would have had to work throughout the night. My friend says, no problem. When my son got back and came in to warm up I told him I'm borrowing the car. He had the new phone in his hands looking at it and he looks at me and says, "I'm not sure who you talked to that helped buy this phone but thank you. Plus helping to make sure we get our things in storage I really appreciate all that you do to help us out.

He has never really ever taken anything for granted because we never had much more than bill money. He has always shown me respect. I sometimes doesn't think he understands that when I became a mom I took on: what I call being a mom and it doesn't stop when you grow up. Different kids might need mom for different reasons. I talked about counting my blessings because I am grateful for every day. I could have easily lost my life when I was with my abusive ex. I'm grateful that I'm able to help each of my 3 grown children. I'm grateful I have an extremely supportive, the best friend ever and lover all rolled into one amazing man. Since I had to move out of my apartment I no longer have to wait out in the cold for public transportation. I'm very grateful for that. I'm not sure why I shared all this. Maybe I just needed to put it down in words. I hope everyone that reads this takes the time to think of 1 thing they are grateful for.

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My Friend May Be Right!?

I've recently taken on a part time job at a department store. $13/hr. My friend asked me: why are you doing this to yourself?
(She may be right) but I need $ to live, and my $32/hr contract job (easy) has ended. So what's a Gal to do? 🤷
#Fibromyalgia #ChronicFatigue #hashimotos #ChronicDepression #ChronicPain #Spoonies

7 reactions 5 comments
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Wet and Windy It Is… Sleep We Must!

Quoth the Yoda Puppy, “The day is dark and cold and dreary; it rains, and the wind is never weary. Strong the force was with that poet, Henry Wadsworth Longfellow.”

Happy Monday all—Yoda Puppy and I wish you a good week with more light than dark 🤍🖤

#Dogs #MightyPets #bed #MightyTogether #MightyMoment #Fun #funny #Laugh #StarWars #Quotes #MightyQuotes #ChronicIllness #Spoonie #Spoonies

2 reactions 7 comments
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World, I Want To Get Better

It’s been raining most of the weekend in England. After a week spent in hospital, and 7 weeks from my first A&E trip for ‘concerning’ heart waves, my view is currently limited to my bedroom window. My “Room Without A View” as I’ve been calling it.

Rain actually makes me feel better mentally. I feel comforted when the world outside matches the bleakness of my insides. Where “muggles” dream of beach escapes, I hold in my heart a Walden worthy longing to escape to countryside cottages with wood burning stoves, mismatched mugs and cutlery, surrounded by woodlands and heaths. Give me the tumult of the Brontë sisters as opposed to suffocating heat any day.

All this preamble serves to bring me back to my original point; the rain. More specially I have had this song by the immensely talented Sia stuck in my head for days. The song is significant in it’s own right. But with a few tweaks, I think it is all the more meaningful to the chronically ill. I offer it up to you now in the hope that it helps to convey something of what our lived experience is like. And perhaps some of our shared fears about what life may not hold in stall for us all.

I hope you enjoy it. I send with it gentle hugs, comforting light, and quaint little spoons ✨

World, I want to be better

I want my life to matter

I am afraid I have no purpose here

I watch the news on TV

I am abandoned daily

I am afraid you don’t see the real me

And the rain it falls, rain it falls

Drowning the seeds of love and hope, love and hope

I don’t want to stay here, stuck in the weeds

I feel alone in all this

I’m not faking, I promise

Bed bound, I can’t do anything

I feel alone in all this

I’m really trying, I promise

I wish I had people standing together with me

Maybe then I could do anything

World, I want to be better

I want my life to matter

Without your help I have no purpose here

Have you the courage to change?

Change and see the real me

Please don’t leave me here, stuck in the weeds

Have the courage to change

Change the way you see me, today.

#ChronicIllness #Poetry #Sia #Doyouseemenow

#Rain #bedbound #thisismetrying #Spoonies

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What do you wish your newly diagnosed self knew about your disease?

I was diagnosed with RA 20 years ago. A few other autoimmune disorders followed shortly after. I went through so much struggle physically and mentally. It took me years to understand that I was not to blame.

If I knew then what I know now I would tell myself to not allow others to make me feel responsible for developing my disease and I did something wrong to become sick. I would remind myself that my illness does not mean I am a bad or lazy person who brought on my disease.

Before my diagnosis, I took good care of my body; I exercised, ate healthy foods, and lived a good life. I continued that after RA. But my body (and other people) often tried to imply that 'if only I did a, b, or c, I would be fine'.

If you knew then, what you know now, what would you tell yourself to help you continue to live as best as you could? #Spoonies #ChronicIllness #


Interest in a podcast specifically for people with chronic illness and/or disability?

Hi all,

I'm brand new here, trying this out for the first time. I'm working on putting together a podcast made by and for people living which chronic illness and/or disability. The goal is to share real stories of how people adapt to their new lives, challenges they've faced, what they've learned, how they cope, and also interviewing professionals who work with people with chronic pain. This is specifically for people who used to live "normal" lives, but had to completely change their lives due to medical issue or trauma. The focus is not on any specific condition, but about how we deal with them.

Does this sound like something appealing to you? What topics would you like to see covered in this podcast? What would be most helpful for you? Also anyone good with computers interested in helping to create the podcast, please send me a message! #neisvoid #disabilitysupport #Spoonies #reimaginelife2 #Chronicpainwarrior

1 reaction 1 comment