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We're not weak, we are warriors

Nov 03, 2016 8:55 PM

Those that think we're weak are just clueless, we fight so hard every day. Here's my typical day...

6:45 am - wake up, my arm is asleep from my shoulder down. It feels like I've been hit by a bus. I can't bear weight on my ankles. I waddle to wake Bub up for school. I creak when I move. I take a hot shower to stretch and get moving. My shoulder pops when I wash my hair and try to fix it. I'm warmed up and stretched and it's time to go. We head out the door.

7:45 - drop my kiddo off at school and then head to my first client's house to work on taking morning meds & injections. He does well and makes my heart happy

8:15 - commute to work. Christian radio is on, coffee in my cup, devices charged, reinforcers refilled, and I'm good to go!

9 - 11am - I work with a little client. 3 years old. Loves gross motor play and vestibular input. Being well paired is essential with this friend. We're running, tickling, and I'm picking her up and swinging her around. She shrieks with excitement and makes great eye contact and seeks me out for more interaction! I love it! My body doesn't, it's already groaning loudly at me. We're up and down, on the floor, on our feet, bending to potty train, up and down, up and down. It's 11, time for her to go. We had a great session. We're both smiling. My body is NOT happy.

11-2 pm - I work with another friend, a 6 year old. We're paired and work well together. I have a chance to "rest" in that I'm not on the go AS much. My neck (c-spine and upper T-spine) feels tight, achy, burning. I look down and streeeetch my neck. Over and over I stretch, hoping to get some relief. I take some aleve.

2-5 pm - I work with another little client. Another 3 year old. He likes to move and play too. We jump on the trampoline, we're up and down, up and down, from the floor to our feet, potty training, doing all the moving and shaking I did in the morning only I'm slower and I'm EXHAUSTED by now but I can't slow down or he'll leave me behind. Gotta keep up. He does really well, I'm able to get some good work out of him. It's 4:30 and time to head home. It's 80 something outside but I've got my heated seats on high because its like having a heating pad on. I drive him home to his mom only to find out he's fallen asleep in the car seat on the way home. I carry this sweet, sleepy boy up 3 flights of stairs to his apartment and deliver him with a smile. My hips are burning. My legs are shaking. I can't wait to get home.

5:30 - I get home. Thank God my husband's cooking dinner! I called and told him I'm wiped out and I can't do it tonight so he stepped up. Oh how I appreciate that man! My lower back is throbbing, aching, burning. I'm getting sharp stabbing pains from my low back down through my hips in addition to the tightness and pressure and pain on my spine. I sit on the couch with 2 pillows behind me for support and muddle through dinner. Not really hungry, more nauseous but I eat anyway because my meds will upset my stomach if I don't. I'm done...with dinner and my day. I have to sit down to change into my night clothes.

6:30 pm - The hubby brings me my ice pack and I lie in bed with it under my lower back. I can't move. I'm wincing in pain and every other word is, "I'm hurting." I'd have to say this is an 8 day. Maybe 9. I take my tramadol and flexeril. Dear God let these meds kick in quickly. My upper spine hurts and causes my chest to hurt. It's hard to breathe. The pain literally takes my breath away. I get up to go to the bathroom and my back almost goes out. Hmm...I wish I didn't leave my cane in the car. Now would be the time to use it. Crap. I make it back to bed.

9 pm - ice pack is warm. Time for the hearing pad. Meds have kicked in and taken the edge off. I'll try to sleep but I KNOW I'll end up waking up in a couple hours panting and screaming, unable to move because my back will be frozen solid. I'm SO looking forward to sleep! Sense the sarcasm? Oh well it is what it is. It's worth a shot.

And tomorrow I'll put on my best face and do it again, to the best of my ability. What scares me is what if I can't someday? What if I can't put on a brave face and push through the pain anymore? What then? It terrifies me. This is my passion and I've put in so much time and effort, literally blood, sweat, and tears into this profession. I've got all this schooling and training but it all leads to this career. What if I get to the point that I can't do it anymore??? What the hell will I do with myself??? It's so scary to think about that but I do on days like today.

10:30 pm - everybody is sleeping, the husband is snoring, and I'm pondering life's difficulties. Forget it, it's too much to worry about. Time for prayers, gotta give it to God and trust that everything will be okay. I'll try to sleep. Goodnight.

Nov 04, 2016 5:42 AM

Oh wow, how your able to do all that and work thro all that pain....I'm in awe of you, I wish I had half the energy and will power you do to push thro it all. Just rest when you can during the day and rest on days you don't work to try and give yourself the best chance at doing what you love for years to come.


I can only say to carry on doing what you do and continue to love doing it, I know it's hard but if you can yes think about your worries but after a few minutes acknowledge that it may happen in the future but for the time being you can still do what you love and put the worries in a box for now. My cbt counsellor said you will worry about things, that's only natural.

She also said to give yourself say 5 minutes a day to think and worry about things, then if you can change what you worry about then start processing the change but if it's something that you can't change once the 5 minutes are done put it in a box out of the way and try not to let it out again until the next day when you next have you're 5 minutes to think about your worries.

I'm sorry there's not much more I can offer πŸ˜•

Sending you { { { BIG GENTLE HEALING LOVING HUGS } } } XX

Nov 04, 2016 1:04 PM

You are my hero cassi33! I can only wish I could do as much as you do daily. A life with chronic pain and fatigue is never easy and is challenging no matter what we do. And despite it all we carry on. I'm proud of you and you should be too!!!
((Blessings and πŸ€— hugs)) keep up the good work.

Nov 04, 2016 1:11 PM

Cassi33, the only thing I can say is when (if) that time comes (and yes, it's scary), is you will deal with it. Will it be easy? No. Will it be what you want to happen? No. However, having 20 years on you, I can only say that you need to focus on the here and now. I am STILL trying to come to terms with the here and now and my mind still wants to fast forward to what if.. however, every moment you take worrying about the what if's in life, you're missing precious moments. Sending you positive vibes, well wishes and gentle {{{Hugs}}}.. know that no matter what, somehow it will be ok. πŸ’•πŸ˜Š

Nov 04, 2016 4:57 PM

Cassi33, oh my lord! I wish I could do all that. I'm rather the same waking in the morning. But it takes at least anhr and a half for my meds to really kick in.
You are an inspiration. But please take care.πŸŒΌπŸ’œπŸ€—

Nov 04, 2016 8:44 PM

I am so impressed by your strength. I am new to chronic pain and disease and I also have the fear that I won't be able to continue next term, next year, or maybe 10 years from now. You are so inspiring being able to do everything you do for yourself and your family πŸ’— don't stress too much on the possible futures, just enjoy the moment you have right now. (so much easier said then done though!)

Nov 07, 2016 10:35 PM

Thank you guys! Sorry for just getting back to the board. Been busy studying and doing the usual. Sezzy I LIKE the worry box! As a matter of fact I may use that for a client of mine who perseverates on things and gets bogged down with worries. Thank yall for being so supportive. I'm glad I found a community of people who "get it." Love and hugs to you all!

Nov 08, 2016 3:15 AM

I've found the worry box helpful and try to use it all the time altho in flair ups I lose focus and forget to use it but I'm learning little by little to remember to use it when I'm in a flair.....it'll take patience and perseverance but I'll get there.
My daughter has found the worry tree helpful but I like using the imagery of the worry box!
If it will help your clients then feel free to use anything that will help them.
I hope you're having a good day today xx

Nov 08, 2016 10:42 AM

Cassi33, that sounds familiar to my work days of old, until I had to quit for major surgery in 2010. Only I worked in medical records lifting, sitting, filing, scanning, boxing, etc; all day long standing squatting lifting bending sitting motions that wore me out the last 3 years I worked. Due to continuously added complications or new dx problems I can't work anymore. For 4 years I tried to convince myself it would all go away and I'd return to the work I loved someday. Finally the reality and realization set in. Ive learned to accept it all, my inabilities, my diagnoses, and my reduced abilities. But most importantly I have learned to take every day one at a time; one situation, one hour, one moment or decision, one step. Enjoy what you can do while you can, and pamper yourself in rest and relaxation. Should the day come you must give it up, deal with it then, but for now don't dwell on it. To dwell on the what ifs in the unknown future only causes unnecessary stress. Use positive thinking of what you do have, instead of what you don't, and use relaxation, deep breathing, gentle stretches, massages, music, comedies, books, crafts, or anything else to help you get through the bad times. Hugs, love, & prayers you can work many more years to come! πŸ™‚πŸ’•πŸ™πŸŒΈ

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