I try my best to post the most positive stories I can – despite how I may feel sometimes. I refuse to let a chronic pain issue defeat me but I have to admit – it’s hard. I work at it every day. I’m doing much better, and am happy that I’m no longer suffering in the way I was before. But I’m going to be honest here – coming out of the fog of an illness has its challenges as well.
To break it down, here are a few things that came to light as I got better that I’m still working on. If any of this sounds familiar to you (whatever you’re going through), I hope you can find some comfort in knowing you’re not alone.
Man, leave up to an illness to find out who your real friends are. In my case, I’m fortunate to say that many of my friends have been there in their own way. I repeat – in their own way. One lesson I learned was that your friends will not be there in the way you expect them to be. They will give you what they can, in the ways they know how. Trust me, it took me a while to recognize the difference between my expectations and how much is in a person to give.
It wasn’t easy.
Truth is, when I “came back” everyone else got closer and shared things together that I wasn’t part of. In many ways, I was picking up where we left off and starting over at the same time. I had to remind my friends that I was well enough to be invited again, which isn’t a fun position to be in. While time stood still for me, the rest of world kept going. It was an unpleasant reality to get used to.
My mother has been so supportive and helpful. Really, there are no words. There are so many people out there with “invisible” disorders who do not have the support of their families, and I can understand how painful that is. I experienced that with my ex. Many loved ones get impatient and just want you to be better. But they don’t realize that their love can help expedite the healing process. Just like friendships, you certainly learn which family members are not worth the energy. It’s sad but after going through so much, you have to cut off what doesn’t suit you. And sometimes that includes blood relatives.
Related: My TMJD journey
Holy smokes. TMJ disorder has to be the biggest medical money pit ever. When I tell people the cost of my orthotic, they’re floored. That doesn’t include chiropractors, doctors, labs and a host of other medical treatments I went under prior to learning what was really going on. This disorder is called a master in disguise because it will seriously lead you to believe you have a brain tumor, heart issue or cancer. Why? Because so many doctors refuse to correlate spine and neck issues to our nervous system, brain function, digestive system – everything.
Right now, I’m in the process of fixing what I refer to as a giant bowl of spaghetti in medical costs.
The outside world
When you come out of the fog of illness, the world just seems different. When your symptoms become your companions, it’s not easy stepping out and interacting like you did before. You’re a changed person. You’re more aware of your body, your thoughts, your actions. It’s part of what happens when you feel your body has failed you. You’re hyper-aware. It takes time to just to just relax and trust that things will be OK.
And may I also add that being chronically ill or in pain is isolating. It’s lonely. Getting back out there takes work. It’s been baby steps for me. I start feeling out of my comfort zone a lot faster than I used to, and then it gets awkward. That’s when I know it’s time to go home. My social skills are definitely not what they used to be.
When I tell people I’ve gained weight they tell me to knock it off and that I look fine. No. I’m not fishing for compliments when I say I need to lose weight. For about a year I was not able to eat and lost about 30 lbs. When I was able to eat again, I ate. A lot. I learned all about comfort eating and carb highs that felt oh, so, good. It was the first time I went to food to feel better. Ever. I never understood that concept because I used to not eat when I was stressed or sad. Well, I certainly do get it now. When nothing feels right, food provides a sense of normalcy. I was also unable to do any kind of exercise because it would make my symptoms worse. A sedentary existence and pasta isn’t the way to go.
I eventually gained the 30lbs back and more. But since I gain weight evenly and have a small bone structure, I can look OK even though my labs say otherwise. According to my doctor, I’m a fake skinny person, which can actually be pretty dangerous. I’m on a wellness path right now but can’t say I don’t have my moments where I blame this disorder for setting me back physically. I’ve gone there many times.
I share the best parts of my life because I want women out there to know and feel like they got this. And you do. But there’s no triumph without getting your hands dirty and sitting with some things that may not feel so great. It’s all part of the healing process. It’s part of the work.
TMJ and its aftermath has been my biggest blessing and my biggest heartache. It’s also been my greatest teacher. A teacher I don’t always like and whose homework I don’t always want to do.
If you’re coming out of the fog of something life-changing with a new sense of clarity but a ton of work left to do, I hear you. It’s not an easy place to be, and I get it. I hope in some way this post touches you, and gives some comfort Even if it’s just a little bit. We’re in this together doing the best we can.