How do you describe your pain? What do you do to manage it? Is it better or worse than when you were first diagnosed?
Pain can be relative. Bone pain versus a headache can be the same for most. I think how we manage and unfortunately get used to the minimal versus major discomfort.
Depending on where the pain is usually depends on what words I use to describe it. For example my back feels like it's in my muscles or nerves with the pain and it's all over spread out. It's not sharp but a strong ache. My gallbladder however is sharp and makes me want to slip into a deep coma when it acts up. I've personally started using CBD with Delta8 (it's legal here in Texas) and it's been a godsend. My cat also sticks with me and that helps my body and mind relax more. I think the pain is still the same without the medicine but I've found ways to help cope with it at least.
Thanks for the article and comments. Comforting to know that others have the same questions and reactions. I know that others care, but do not really want to hear your woes. The comment is often that it would be better if you just took a Tylenol or used an ice pack. How do I reply to that remark or when someone says "do you know how many times you have groaned in the last hour?"
If only taking a pill or ice pack would do it! However, my Doctor also warns me about kidney and liver damage from taking pain pills. Then there was the pill that my Doctor prescribed that a side effect was listed as "suicidal tendencies ." Now, I know that would clear the pain problem, but not what I want to do.
I find it hard to talk to friends and family when they ask "How are you doing?" I know that they mean well, but do not really want to know if it is bad. Should I lie and say things are wonderful? Sometimes, when I tell the truth, I get a blank stare and we both feel uncomfortable.
I thought it funny in the supermarket recently. The checker was adding up my groceries and asked "How are you?" I replied that I was miserable, horrible and in great pain. In a robotic voice, she replied "That's nice." and continued to check my items out. People do not want to really hear. I do not wish to complain or want sympathy, but I hurt.
How can we handle this? Do we tell the truth, do we minced the words and underplay or just lie and say I am good?
Since treatments have started and are working I really do not have much pain prior I had lots of pain from the enlarged spleen and liver but not so much not. I still of course have my arthritic joint pain but what are you gonna do that is something I will just need to live with. CT or PET scan within the next few months to assess things and see if Maybe, Maybe we can space the treatments further apart ??? wish me luck
So glad to hear things are improving.
We'll be keeping you in our thoughts and sending tons of positive vibes for your upcoming CT/PET.
Please keep us updated. All my best, Doreen (Team Member)