Over the last week, I have had a few really bad days and unfortunately, I can sense a flare coming on. Today has been extremely difficult to push past the pain and sleep right now seems well out of my reach. So, I decided it was time for a post from the spoonie side of me.
With my Fibromyalgia (or at least that is the current diagnosis, though MS is also in the mix), the pain and problems tend to be worst towards the end of the day. On most days, I can function and push through the pain, but once I relax, the pain in my legs settles in. A burning pain, almost like there is a fire burning underneath my skin. A pain that makes my legs feel as though the skin has shrunk and there is not enough room for things to move. My legs become super sensitive to touch, where even a bed sheet touching my legs makes it feel like a million needles are digging deep into my skin and muscles. And this is just my legs.
Another symptom that I often deal with (and have hit more often this week, making me think I have a flare coming on) include ocular migraines. They tend to deliver a lovely pain to the back of my eye, something like an ice pick. Then there is the muscle spasticity that I have in my arms and shoulders. They feel like a rubberband that has been tightly twisted and then released, causing arm jerks. My kids refer to this as my “special” dance moves. In addition, this week I have also been experiencing a loss of grip and fine motor skills. Oh what fun!
Now, this is my evening tonight, but what will it be like tomorrow? Some days, I might wake up feeling relatively well (now while I say well, I live every day with pain and problems from my back issues, so there is never a chance of pain-free) or other days, I can wake up feeling even worse…and that’s assuming I get sleep (but who needs sleep, right?). For me, that unknown is the hardest.
As someone who was always active and played sports, I have had my fair share of injuries. You go to the doctor, follow their directions, heal and get better. Unfortunately, no amount of rest helps (and even if it did, the pain often makes rest difficult). I never know what I will wake up to. And even if I do wake up well, things could change by lunchtime. The only thing I can expect for sure is that by dinner time, the pain in my legs will start creeping in.
While I do push through and try to live a “normal” life as much as I can, that is not always possible. For example, today I woke up in pain, but pushed through because we had plans to go to the lake. So, we packed up the car and headed out. When we got to the lake, the kids eagerly jumped in and began playing and swimming. I gingerly walked into the water, but, after a few cooler days, the water temperature has dropped and I could feel the muscles in my legs getting angry the deeper I went in. Even though I wanted to swim with the kids, I knew I just couldn’t. I made the mistake of doing it once and spent the time having my daughter help me pull on my feet as my toes locked and my muscles locked.
Even though I avoided the water today, the pain has continued to grow and I am seeing an all-nighter in my future. I can sleep when I am dead right?
So, aside from sharing a bad day, why is it that I am sharing all of this? Because, while I am sure that many of you spoonies can relate to my day, most people can’t. It is nice to have someone or somewhere to share what I go through. It is nice to have people that understand. It is nice to know that I am not alone. It is nice to be able to let my hair down, so to speak, and not have to hid the pain.
As spoonies, we all have good and bad days. We all have friends and family that don’t understand. I was just talking with a spoonie friend of mine the other night and this is what we talked about. She said the hardest part of all of this was feeling alone…losing friends…having family that doesn’t understand. And she is right. We learn to live with the pain and deal with it, but it can be isolating and losing friends because we can’t always do things gets tough.
One of the reasons I started Spoonie Foodie (aside from getting to cook fun stuff and share it) was to let other spoonies know they are not alone. I want to create a support system for other spoonies out there. As my friend said, the only friends she has that understand are her online spoonie friends. My hope is that the Online Community Forum here at Spoonie Foodie will become a place for all spoonies to find support and make new friends that understand. Visit us there today and introduce yourself.
Now, going back to my leg pain, has anyone out there found a topical pain reliever that helps with the burning leg pain? I would love to hear if you have.