My legs from my thighs down to my toes spasm 24/7, I choose not to take medicine because who wants another addictive medication. Pain medication does not make the spasms go away. I have to wait until the sleeping medication kicks in and try to ignore during the day.
I think of who I once was and who I am now. Both have an upside, it’s a shame the two can’t meet. The empathy and patience I have now would have seerved me well when I was younger.
If I had friends would they understand? Time and distance already created a divide. How would we reminisces over the good times knowing the chances of me traveling to see them or travel again is unlikely.
Would I be strong enough to support my husband if the tables were turned? Could I be there as he has for over ten years, taking care of me every day, worrying about my health, wondering what diagnosis will come next.
My goals have been completely adjusted, a different mindset is required. I push myself each day to accomplish as much as possible but forgive myself if something has to wait until the next day. It will still be there, there aren’t many task so important that it can’t wait until tomorrow.
I have to make self-care a priority every day. Taking care of myself is great for my mental health, my self worth and my spirit. I do the smallest things to make my day brighter.
COVID has not changed my world, I didn’t leave the house except for doctor and lab visits and a daily Starbucks run. You should see the Clorox bath we go thru before leaving the drive thru lane. We take our dogs, it makes them happy and they always make me smile peering out the window at the Starbucks employees.
Guilt, frustration and anger are not my friends but are my daily reality.
In Health,
Melinda
Looking for the Light 
Hugs. Love to you! You inspire me your blog is awesome! xo
Oh…the leg spasms! I hear you on that one. When I’m doing a bit better and I head out (usually only to pick up medication or visit the doctor or grab some groceries) I know the minute I’ve gone overboard, because those spasms go either one of two ways: 1/ My calf muscle cramps up until my leg is completely rigid and that burns like a mofo until I can get home and take a muscle relaxant or 2/ My leg just decides that it’s going to turn to a super-spasming piece of jelly and gives out from under me…usually somewhere where I’m in front of a bunch of people and they look at me like I’m drunk at 2.00 in the afternoon.
But like you, I really don’t go out very much. Doesn’t matter though, because my body is always ready to hit me with something right out of nowhere, just for the heck of it. Last week I managed to slip on my kitchen floor and by putting out my hands to break my fall, sent enough of an impact into my fingers to make them swell up like sausages…as well as more that went up my arms and into my chest, triggering off a bout of costochondritis. It’s like every day is just another opportunity for a “symptom” to rear its ugly head.
I wrote about the recent meshugaas in my last blog post (my blog is actually about me trying to lose weight to help improve my overall health & alleviate some of the associated pains/stiffness that I get with Fibro & psoriatic arthritis) and when I read back over it, I imagined what it must sound like to an onlooker who has no idea what it’s like to live with this stuff on a daily basis. It sounded bonkers. But then, ever since these things crept up on me, crazy really is the only way to describe how much my life has changed and been affected by chronic illness. I really appreciate being able to read the accounts and experiences of other people with Fibro (not because I’m wishing it on another person, but because only another person who has it, gets it!) and I thank you for sharing your own life details on here.
Take care
Blue
It’s great when someone else understands what is going on with you. Fortunately, my spasms aren’t that bad just always going enough to let me now they’re pulling on each other. It can be a strange life we lead but there are so many who have chronic illnesses. I’ve learned so much since getting sick and there are so many people out there who don’t ever get their diagnosis which such a nightmare. Like you, I just learn about twice a year something else is wrong but when you have immune issues that happens. Have you ever check out Fibro Directory? It’s a group of bloggers who write about Fibro and related issues each week in a link-up. You can check them out of the front of my blog there is a widget for them on the right-hand side. Maybe you want to join the group or just check out other writers.
Take care of yourself, stop falling! It’s been two years since I fell down the stairs and I’m so thankful I haven’t fallen since. I broke my wrist.
So glad you took the time to write I appreciate you and will check out your site to see what you up to.
See you soon.
M
Melinda I feel your pain plus some. I started seeking an answer for then 3/4 of what i deal with now almost 24 years ago. It took them 9 years to diagnose me. Basically as they couldn’t give me any other answer. They still think I have other things going on they don’t know the answer for…every idea seems to be auto immune.. I feel liked I missed so much with my kids. Your righ no OTC items or prescription meds work much. I’m allergic to all opioids so I don’t have to worry about that angle…they didn’t help anyway. I do know as bad as I feel If i go off my meds I’m worse.I tried it about a decade ago and can still remember that time. Pretty sad considering how terrible I feel.
I thank everyday for my husband. I seriously have no idea what I would do if he just decided this kind of life sucked and he just left. I have no friends. I have my parts and kids i see occasionally, but he is what my world revolves around. COVID has not affected my life either. I hope you can find some relief.
It really sucks when doctors can’t put a finger on the problem. I have several other issues so Fibro is just one of several. I almost died from Lyme and now have Dementia because of it. I do have a serious immune disorder, I won’t spell correctly without looking but it’s Hypogammaglobinbulemia. Life can’t get gloomy if I let it. Most of the time I’m okay, but like you when your world revolves around someone taking care of you it can cause some concern. Thank GOD I don’t have real kids! Just four-legged ones. I feel for you have to be on the best you can for kids, that has to be very challenging at times. I wish you all the best and so glad you took the time to comment. Do you write about Fibro much? I’ll have to check out your site. I belong to a group called Fibro Bloggers and they have a weekly link-up. If I have something to contribute I share a link over there. It’s a great group. You can check them out from my front page, look for the Fibro Directory widget. Take care and look forward to hearing from you again.