Chronic Illness · Questions to Readers

A Little Scared and A Lot Worried

I just got back from my Monday appointment with Joleen. I finally decided, after the scary emotional swings this weekend, to fully disclose the full pain in my arm (I hadn’t really been hiding it consciously, I think I was mostly lying to myself). There were several episodes this weekend where the pain in my arm got so bad it pushed me to tears.

After talking with Joleen, and explaining everything, she seemed worried. I don’t like when my doctors get nervous. But, she is right. Normally, when my body randomly acts up, it just takes a few weeks to get it back into sync again. My arm pain came out of no where. I didn’t do anything, and it suddenly was killing me. We’ve been stretching my nerves, trying to release the tension, and rubbing out the knots for several weeks… and we haven’t made any progress.

If anything, I seem to be slowly getting worse.

My arm pain won’t go away. It’s starting to become a very deep ache that just never subsides, pierced by sharp electric pain that makes me want to vomit and pushes me right to the edge of involuntary tears.

I seem to have developed a knot in the nerves under my right shoulder blade, or else my nerves are just so fried that the pain is far more intense for a muscular knot than it should be.

I’ve developed instability through my thoracic vertebra (and thus my rib cage) due to my inability to weight bear through my arm.

My headaches aren’t necessarily any better… I may have gotten used to the pain (very possible). I still get a LOT of headaches that definitely mess with me at times. But I’ve also gotten very good at functioning with headaches.

I have to keep taking Tramadol to keep my arm pain at bay, but it can be addictive, so I’m very worried about that. Joleen recommended icing my spine instead, because it might help.

I have lot the ability to grip things and move my arm. I can hold onto large objects that don’t require much hand closure, but anything small-ish (like pens) or heavy (like my water bottle) is very painful to hold onto. I’m extremely right handed, so this is problematic. I think I’m going to have to start practicing my left handed writing more, just in case.

Usually, I try really hard to keep everyone from worrying, including myself. I don’t like to lie to people, but I hate pity and I don’t like people worrying about me. I like to be the one that is there for everyone. I like to help people be the best they can be. How can I do that when they’re worried about me? I try my hardest to reduce stress and add happiness to my life and the life of the people around me. I try my hardest to keep from focusing on my illness. It’s so hard to stay focused on living my own life and finding the happiness in every occasion when all I get is “you poor dear” at every ache and pain I mention. I only mention them because that is what is happening in my life. It’s 100% NOT a “poor me” type of thing. Every single time I hear “you poor baby” my skin crawls. NO! I am NOT a victim to my pain. Does it suck sometimes? Yes. If I let it get to me and believed the “poor me” thing, then I would NEVER get out of my bed again. I cannot stand pity. It’s just a “this is what is happening in my life, how is your stuff going?” thing. I AM NOT A VICTIM! I’m lucky, in a way. I have a feeling that someday, unfortunately, I’m going to need this higher pain tolerance and the ability to push through near-blinding pain. I don’t want to need it, but if I ever do, I know what I can do. I’m so good at the mind over manner thing now, and I know it will come in handy some day in some way. But please, stop the pity, it actually makes things worse and makes me want to hide even more.

Anyway, back to where I was going.

These new things, they hurt. They hurt a lot. And I’m scared. I’m very scared. I don’t want your pity. But understanding and assistance are things that I need. I have a very hard time asking for things… but if any of you happen to know what kinds of things I could research, I’d appreciate it. That’s how I cope with everything that is happening with my body, research. I look up things until I feel I know them as well as I can without a medical degree. I’m struggling very badly right now, because I don’t know how to look this up without making it worse (by looking up specific illnesses I know about that are quite serious). Does anyone have any ideas? I’m lost and scared. No pity though, please, just research help would be appreciated.

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6 thoughts on “A Little Scared and A Lot Worried

  1. Hi. Me again! You remind me so much of a friend of mine who has MS and loads of other related symptoms that turn into their own illness. Last year I did a 12 week program called WRAP. it is free or you can go on the official website by the founder of it. Here is the link to my WRAP page. t stands for Wellness Recovery Action Plan. It gave me the steering wheel again. I feel in charge of my illness – have a look at the promo demo on it. It’s a shot in the dark or it could be the one thing that helps you more than you know now. When I did the programme, on of the members suffers from chronic pain and we still meet up every wed. Feel free to research it or not. https://daisywillows.wordpress.com/category/wrap/ Take care.

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    1. Thank you, I’ll look into it 🙂 MS is one of the things that scares me… I know I have a lot of the symptoms. It was initially ruled out when I was diagnosed with fibro (blood testing didn’t show any autoimmune), but I’m wondering if that has changed.

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