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?
Taking Stock
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:
Sam xx
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My Medical Musings 
Hi sweet friend, I can relate to your post, even though my state of exhaustion is due to other things than yours. A little sign I got for my office years ago says “stop me before I volunteer again.” I have a way of over committing.When I got RA, though, especially when I had shoulder surgery, I had to slow down, though. I was in bad shape six years ago when I was blogging about my illness, but when I got a coach and she told me what I needed to do to better care for myself, I got better. What can stress be out us the feeling of being “over-needed.” When too many people are pulling at me, I feel I overwhelmed and get super cranky. Recently, I decided to get my social life back. For me, just talking to an old friend on the phone gives me a boost! And as I have taken the time to care for myself, others who previously seemed helpless (like my teenager) suddenly found a way to do things I was ‘needed” for before.
So a couple of thoughts for you: 1) I have always wondered if you weren’t putting too much on your plate. Perhaps take one thing off your plate that just isn’t bringing you as much joy or satisfaction as you thought it would, or the one thing that’s adding the most stress. 2) Be happy in knowing what you have already done has helped many. You don’t have to keep doing it to know you’ve made a long lasting difference. I dropped off a non-profit boar recently when a new president was elected and she made changes that would have doubled my workload. I had to decide that all I accomplished in the year I served was enough, and I do not regret my decisions to join or to leave! 3) Perhaps God is telling you to make room for not only your own self care, but for your family as well. Because my husband us my partner, I often forget to see my him as someone I should be ministering to. That extra time you want for you and Peter isn’t just for you. It isn’t a purely selfish desire. Even if he doesn’t say it, I bet Peter would love to have more time with you to do fun things, even if that’s just going for a drive, playing s board game, or having tea with you on your patio.
Bottom line: it is okay to prioritize self care and if you need to let something go, it doesn’t mean you have failed. God will fill in the gap with something new and beautiful.
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Thanks Linda. Last week I reprioritised and cancelled a few things for this year in terms of volunteering and writing commitments.
Unfortunately everything I needed to cancel are things that bring joy. I love all the activities I’m involved in.
My tiredness is not directly from my activities, it’s from the relentless pain of my bone disease and the speed at which it’s progressing. Something I don’t have any control over and which threatens everything I love to do.
Thankfully Peter and I are not short of quality time together as we spend 24/7 with each other, but I am hoping cancelling a few of my activities will give us time to try and get me out of the house a bit more. Even that is dependent on my body allowing it though.
We’ll work it all out. We always do with God’s help.❤
Love you loads xx
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i have read that our mind can process 70,000 thoughts per day. Others disagree and say it is more like 25,000. Whatever the number it is a bunch. My mind is a little lazy, so i ma guessing mine might be 2,500 .
regardless I do know about the endless running tapes in my head. Both positive and negative words turning over the over that define me far more than what anyone ever says. You should know you are making a terrific difference to many in your community. I know it must be a terrible struggle, because I struggle with doing things without the most positive feedback.
I say keep going as long a it makes you happy and stop it when it does not. Its like my blogging, I do it for me these days not for others. If i like to blog I do, if not I do not worry to much about it.
rick
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Thanks Rick. I definitely feel blogging and my forum are ky main passions and will always be top of my list.
I cancelled a teleconference with a US company today who were offering me a writing contract. Felt so good to say thank you but no thank you!
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call them back and tell them rick is available. LOL
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Empathize greatly with you, Sam, and this post. I’ve been on a blogging break, simply because I haven’t felt the words to share. Illness has been ruling my every moment for months, leaving zero energy to share with others. Wishing for you peace with decisions you have made and will make regarding commitments outside of what brings you true joy. Thank you for all you do to help others and the chronic illness community. May strength and blessings surround you, always.
—Terry xx
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I always say that we should focus on what we can do, but, Sam, it’s ok to shed some tears now and again about the things you can’t do. And it’s ok to be honest about it in your blog. We can try to be positive, but we also have to be realistic and sometimes, it’s good to share those tears.
I can understand how you’re feeling just now. Last year things became a bit too much due to losing my Dad and father-in-law, stress of the pandeminic and my own pain. I had been focusing on my blog, tn support group and awareness page, and I hit that point where I realised that I needed to step back. I had to. I was going to say I had nothing to give, but that’s not true. I simply knew that I needed to give what energy I had to myself. I slowed down. There are other admin who help with my group, so I could step back a bit and breathe. I relaxed a bit with my blog. I wrote, but much of it went into my draft files for later when I can read and edit carefully (that takes more energy than writing sometimes!) Stepping back and slowing down let me recharge. I’m still at the ‘getting there but not quite arrived’ stage.
We are helping people in our groups and with our blogs. But what help can we be when we push ourselves so far that we burn ourselves out. Prioritise and put yourself at the top of the list. You deserve that. You owe yourself that.
Take care x
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Thanks Elizabeth. You definitely had so much to deal with last year and I am so sorry for your losses.
Yes, I definitely need to remember to take time to focus on my needs. Never been my strong point. It’s probably the greatest lesson chronic illness teaches us and that’s not a bad thing.
Thank you for sharing your thoughts and your story with me. I really appreciate it xx
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Oh Sam. This so speaks to where I am right now (and have been for awhile). I just can’t get “life” together. I’ve had so many losses (but not your pain) and it seems like I’m losing even more now. I don’t seem to be able to do even what I did 6 months ago. But I’ve cut out everything but what’s really important. So, what now? I’m still thinking about what else I can let go. 😦
Thanks for sharing your heart. You do so much for us it becomes easy to think of you as superwoman (all you suffer yet all you do for others). Continuing to pray for you and Peter. Will add sense of direction for you.
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Thinking of you Carole. Thank you for sharing. I completely understand how overwhelming it is to have more and more cut from your life and wondering what else can go. I’ve found adding something in I can do, something new, just gives me a little new lease on life. You might need to really think deeply about what that new thing could possibly be but there is always something. I hope you can find it xx
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This is something I needed to read today! About 4 days ago I commented on on one of the check in segments of how happy I was for how well my Microvascular Decompression went….I went around an entire 2 weeks with no trigeminal pain and then 3 days ago it all came flooding back in. I talked to my sister today and just said I need to talk to someone who will just let me feel my feelings….I haven’t been this broken and discouraged in a really long time. I’m even embarrassed to have to tell people that it’s worse again. I know the truths of how God is in control, I know He has a plan…and maybe it’s just a set back temporarily but right now I feel that I’m just not ready to accept that plan if it ends up being what I have to carry. I don’t want to. I can’t cry because it hurts worse to cry so I hold in the pain and I just want to release it. I feel afraid of continuing to be trapped and worthless. Thank you so much for just being human and sharing this vulnerability because it helped me feel less alone in my feelings. Sam you truly are a warrior in my eyes!
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Oh April, I am just so sorry. I can imagine how devastated you must be feeling. Sometimes surgeries do fail. I’ve had failed bowel surgeries and failed spinal surgeries. Our bodies can have a mind of their own.
Sometimes post surgery pain can be an infection. Don’t hesitate to let your Surgeon know as I’m sure they’ll want to run some tests.
Remember too….you are not a failure. This is just something outside of your control. You didn’t do it and it’s no reflection on your faith and love of God.
I’ll be praying the pain will settle and this is just a post surgery glitch.
Sending lots of love, Sam xx
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