My friends have been asking about me lately and I wish I knew a better way to thank them for their love and support, but because the battle is so hard right now it is difficult to know what to say…
I wonder if other chronic fighters feel the same?
I want to say that I am ok, truly I do! … but do I owe them a lie or the truth? Is it kinder to say “… I am ok, thank you…” or “it hurts so much I am barely hanging on?”
What do you tell the people you love? It’s like a double edged sword. Both sides painful and neither are easy.
I am mostly saddened that after all these long years that I had hoped that I would be stronger at coping through such desperately difficult times. Such painful times. Such debilitating times; but I am not.
I saw a picture of an old building which was slowly giving way to the forces of nature and time. No matter how strong or beautiful the building was or had been, time and forces have had its way… and always will.
Am I strong? Have I been strong enough? Or have the forces of time, pain, disease and many other factors been slowly eroding away the person that I was and the person I wanted to be?
Yes. It has.
Yes it has.
How do I explain that to others who may react unpredictably to this and not know how to interpret this information? I don’t want to worry them. I don’t want to hurt them. I don’t want to intrude on them.
Today I was barely able to be awake for longer than a few hours before pain and weakness forced me back to try and rest. Exhausted.
Sleep has been fitful but it has also been a refuge from the pain of being awake. I treasure whatever sleep I can get these days.
I am taking more pain meds than I ever have. I have had to increase my prednisone (steroid loading) because of the pain on my joints and stomach/ bowel. I am too weak to walk without Derek or my chair, in fact it’s hard to move my limbs at all. I can’t eat without horrific pains and throwing up on myself; so I don’t eat.
However, I worry more for my husband and my darling furries. I worry about how they are and I feel bad that I can’t give them more than a soft kiss and a teary thank you.
Guilt and pain are a toxic combination. More poisonous than arsenic.
I am laying here with heat packs, an electrolyte drink in a child’s sippy cup, a sleeping puppy, a vomit bag, a book which my husband has been slowly reading to me, pain killers and my blog.
I keep asking myself ‘ … are other chronic fighters doing the same?…’ is this something we all share and experience? Is this what connects us all?
And this is why I write what I write. To reach out. To share the things I ask myself all the time. In the hope that others may understand. In the hope that it makes a difference. Somehow.
Like an old building that may be eroding and embattled, there are stories and memories everywhere. Even things to share and learn.
And now I must rest again…
7 thoughts on “The Buidling”
Dear Trish, I am sorry to read about how much you suffer. To answer your question, yes with a chronic illness life becomes limited. I too have friends that wanted to visit and it’s impossible to know how I’ll feel, the embarrassment of a dirty home and the reality of who I am now and the lack of energy have made this impossible. But, after 2 years of disability I accept it and am slowly finding a new identity I can accept as mine and am finding some happiness. I tell past coworkers, friends and family, “I’m hanging in there”. I can’t say I’m fine cause well I’m not and it’s not true. I read blogs, joined some Facebook chronic illness private groups and have found a few folks who have it worse and found peace. New mentors for me on how to navigate.That has helped me. I too have my husband helping me. I have reread my books on consciousness and am understanding what I missed before. Your thoughtful writing is a wonderful outlet. I hope you can find some relief and peace, Sincerely, Marla
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So true Marla. It is truly a painful bond uniting so many of us. But I am glad that we can find others with similar paths and coping. Xxx thank you for sharing 💐
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Reblogged this on Ramblings of a 50+ Female and commented:
I’m sure all chronic pain suffers will relate to this – and the guilt.
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Trish, I don’t know if it will be of any practical use, but read up on the Clint Paddison Program and see what you think. All I know is that I’ve been on it 4 weeks now and my pain is at least halved !! Might help, you never know !
I love your postings. Yes, we truly know what “One Day at a Time” means because we live it. The uncertainty could drive you crazy unless you constantly remind yourself to deal with your disease just one day at a time 😊
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Thank you for sharing your understanding. It means more than you know.