There are times I yearn to write but words fail me.
Is it because I am overthinking?
Is it because I’m too tired and in too much pain?
Or is it because if I wrote what I needed to write, it may be too raw, too much for my readers and even too much for me?
While tiredness and pain definitely impact my writing ability, I think what is stopping me today is my need to write straight from my heart, however it might unfold.
My Innermost Thoughts
I’m feeling pretty worthless and useless at the moment.
When I say this to friends and family they will quickly list all I do to try and help others, to care for and nuture the Chronic Illness community.
They will tell me I’m far from useless.
Please listen though. I’m not saying this to incite compliments or encouragement or even worse, sympathy!
I’m writing this to simply be honest about how I feel. I don’t always feel like this but I do today.
My husband will list all I’ve done around our house everyday, pushing through extreme pain to keep our home beautiful for both of us.
I appreciate everyone’s love and their words of encouragement but my feeling useless isn’t about the things I’m able to do.
It’s about the things I can’t do. The things I miss and want to do.
I was watching Qld Weekender yesterday and they were profiling a beautiful restaurant called “Room For Roses”, situated in a gorgeous arcade in the city. They specialise in high tea and I used to frequent it often when I was working.
I found myself crying as I watched. Oh how I miss being able to go there. I miss the city, I miss my work and I miss the camaraderie of working with an amazing team of people.
My body renders me useless physically and it’s getting worse not better.
I’m tired of talking about it and if I’m honest, at the moment, I’m tired of writing about it.
I’m sure people are tired of reading about it too. I wonder at times if I should stop blogging, perhaps stop running my forum. I often think starting a Podcast last year was a waste of time. I put so much energy into setting it up but it has only attracted around 30 followers.
The effort to do all of these things is enormous for me and I’m really not connecting or gathering followers like other bloggers/Podcasters do.
I understand my audience is primarily the chronic illness community and the reality is, they are too tired to really read, listen and engage with blogs and podcasts.
Even my forum members generally are only capable of reading posts rather than engaging in conversations. I completely understand why. I have the same issue but I push myself constantly to try and inject energy, encourage conversations and ensure members feel cared for. They are cared for as I care deeply about each and every one of them.
I’m so tired. I’m trying to reduce my Prednisone dose as per my medical teams advice and it’s increasing my pain and fatigue. It’s decreasing my ability to function in the way I need to for others.
I don’t know if this year I can sustain the things I have been doing. I don’t like that thought at all. I like trying to convince myself I can and I don’t like giving up easily but maybe it’s time to be realistic.
Aside from my pain and disability, part of the reason I don’t get out of the home more or do a few special things, like get to a nice Cafe or go for more country drives, or perhaps have a few nights away with my husband, is because I’ve created a full time job for myself. A job I work as hard at as if I was being paid full-time in my previous Executive Manager role.
I’m only 55 and I wonder what kind of life lays ahead. Can I sustain, living the limited life I live, with this level of pain and disability?
Do I need to completely reconsider everything I’m doing in terms of it’s worth, it’s impact on my own wellbeing and ultimately if it’s really what I should be doing? Am I relevant? Am I connecting enough?
I know there have been some beautiful connections made with people and lifelong friendships made. All as a result of my forum and writing.
I’ve lost so much, I don’t want to lose this gift.
I’ll always love writing, even if it’s in my private journal.
I think I just need something fresh and new in my life but I have no idea what.
Something to ignite a sense of renewed purpose and vision.
Maybe something special is just around the corner.
We always need hope. It’s hope which will turn our feelings of uselessness and worthlessness into promise and meaningfulness.
People think of me as positive and unstoppable. On most days I am but I have days like today where I’ve just had enough of everything.
Days where I want to scream.
I’m normal just like everyone else and there are days when I have nothing more to give to anyone.
My strong sense of responsibility stops me from running away from all I’m juggling.
I might need to hide for a little while though but I won’t ever hibernate for long. It’s just not in my DNA to do so.
I just need a little time to tune out, to be alone with my innermost thoughts and to take stock.
Ultimately I know I’m just tired and I need to go and lie down and rest.
I perhaps should have titled this blog post “Ramblings of The Fatigued”.
Forgive my ramblings.
As the sun sets and evening comes, I’m reminded of a beautiful hymn, “Abide With Me”.
I know my innermost thoughts are heard. God knows what is “Straight From My Heart”. He hears my cry. He hears your cry.
It will be ok. I’ll be ok.
It’s been cathartic to let the words just roll onto the page. It’s nice to have the opportunity to just write, rather than be mindful of my reading audience.
"Abide with me, fast falls the eventide
The darkness deepens Lord, with me abide
When other helpers fail and comforts flee
Help of the helpless, oh, abide with me:
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link to My Story