Moving, and Moving Forward

For a long time I was told to keep moving in order to improve my fibromyalgia symptoms, but it never helped me. More often than not it would send me spiraling into a flare up of symptoms that would make it impossible to move for days, sometimes even a week or more. Yet over and over I would do what “they” told me to do because all these people saying the same thing couldn’t be wrong, right?

I’ve always been a person who has not only met but surpassed any goal laid out before me. So to constantly fail at simply moving every day was a very big blow to my self esteem. I started to believe what a few truly awful people and a lot of really awful doctors were saying – that I was just lazy. And they must be right because there was no other reason for me to not be able to do this very simple thing.

Fast forward to today where I’ve spent the summer learning the ins and outs of my newest diagnosis, Rheumatoid Arthritis, and receiving the proper medical treatment for it. For the first time in my life swimming is actually refreshing, whereas before it would feel good for only the first few minutes then slowly begin to crush me for days afterward. For the first time in so long I can actually feel the benefits of moving every day, whereas before there were only consequences no matter what I did or didn’t do. I now know that weird sensation of my finger joints suddenly feeling bigger than I remembered was not a hallucination because now my doctors feel them and record the ups and downs themselves, and that getting trapped under my comforter in the morning wasn’t because I wasn’t working hard enough in physical therapy – it was because my immune system was attacking my shoulder joints making them inflamed, painful, and weak. For so long my doctors just assumed all these things that are so clearly RA were  “just fibromyalgia,” proving that they neither properly understood fibromyalgia nor were properly caring for me, and I’ve lived every day second-guessing my sanity because of it until now.

Fibromyalgia still has that “garbage can diagnosis” stigma and it’s not doing anyone any good. If you are a person diagnosed with it, plenty of crappy people will take it upon themselves to wield that stigma like a sword and cut you to your core because according to that stigma there isn’t really anything wrong with you, you just have a bunch of symptoms caused by a whole bunch of things that are your fault, and you need to just do better and you’ll feel better. If you are being treated by a doctor who believes that stigma, how can you ever feel human when the person treating you believes your symptoms belong in the trash? If you are a doctor who believes that stigma, you are failing you patients who have fibromyalgia…and even more so the ones who don’t.

Now I still do have fibromyalgia – as well as hypothyroidism, degenerative disc disease, depression, anxiety, and now rheumatoid arthritis – but being treated as if that were my only problem caused me so much unnecessary pain. I’ve lost years of my life. I can no longer work. I’m a completely different person than I used to be. And all it would have taken was one doctor way back then to rebel against the stigma, properly do their job, and save me. But instead I saved myself by never giving up until I found the treatment I deserved.

I’m very thankful for my current medical team; they are quite simply amazing. I’m on two new medications for RA and the difference is night and day. I’m nowhere near normal, but my quality of life has drastically improved. There’s still a lot for me to learn about pacing myself and RA in general, but now I finally feel better when I move every day. Now I can make health goals and meet them, and every now and again exceed them. But along with the new diagnosis and medications has also come a new mindset, and all together that is ultimately what is helping me.

When I started to feel a bit better I went crazy and overdid everything. Cleaning, social visits, trips with my child – I went nuts. And then because I was feeling so much better my doctor and I finally decided to get rid of one of the last fibro medications I was prescribed. I was so excited! I continued to go crazy as I was nearly a full week free of that medication when I found myself doubled over in pain in the middle of a clothing store with my son, unable to move. The pain didn’t go away. It lasted for a full week and that is when I learned a few very important things.

One, I still have fibromyalgia and clearly need that other medication. I had to learn that my goal was not to be on less medication but to be on the medications I needed to feel better – no matter how many that may be – and that it was bound to be a good amount of them considering I still have several conditions as RA did not magically replace everything else. So I called my doctor and went back on that medication, and within four days I was back to what my new normal had been since I started my treatment for RA. Lesson learned.

Two, most of the things I was overdoing was because I thought I had to do them. I’ve learned that I do not, in fact, need to do all of the cleaning to be a good person. I can actually ask for help even if I’m not in pain in order to prevent myself from burning out or ending up in pain. I don’t need to prove anyone wrong; I just need to be happy. And I’m not happy when I’m doing everything.

Three, I still need to rest even when I feel good. This is possibly the hardest lesson I’ve learned so far. Doing nothing while feeling good feels like a slap in the face to feeling good. But then I had to ask myself why did I think that? The answer is because I was worried about what people would think. How lame is that? New rule – screw what people think and do what is best for you at all times. What others think has never helped you before, why would it help now?

Four, I do actually need to move now in order to continue feeling good. When the pain set in after I stopped that medication, I ended up in bed for nearly a week. I started taking the meds again and it took another four days of being in bed before I felt back to my new old self…except that my back still really hurt. I had a feeling that it was stiffness from not moving, so I bit the bullet and did some physical therapy exercises and in a few short days my back pain levels were way down again. Now that I’m being treated for RA l actually know what it feels like to feel good, and because I have RA I will become very stiff in very bad places if I sit too long. Five minutes of physical therapy a day is enough to combat that. Yes, it really truly is. But that was never the case before I was diagnosed and treated, so it’s been hard to believe it! But the evidence so far speaks for itself.

Five, learning to balance Three and Four is going to be a lifelong journey. It’s not easy! It almost requires me to have a schedule of sorts, something that I haven’t been able to stick to in years because my symptoms and pain were so out of control. But I’ve found that a very small amount of practice every day is actually yielding results. I don’t need to overdo it and I can’t not do it at all, but somewhere in-between it all is my very best life. And that is something that is worth spending my energy on.

Six, everything I’ve learned that I need to do now in order to keep feeling good never helped me before I was diagnosed and treated for RA because my symptoms were far too out of control – it was like throwing ice cubes at a house fire. I may not be able to educate every person who thinks they know what is best for me or what I should be doing in order to help myself, but I can change the narrative within myself when approached by these people and know that my instincts have always been correct from day one. So when stupid things are said to me or bad advice is passed on to me, I can confidently say, “Thank you but my medical team and I have a very good plan right in place right now and none of those things are in it. But thank you, again, for your care and concern.” Or just stick up my crooked, swollen middle fingers, smile, and ethereally float away.

Moral of the story is that there will always be dumb people, rude people, people who mean well but are ill-informed, people who don’t mean well and are ill-informed, bad doctors, good doctors who are ill-informed about your specific condition, people who mean something to you and have no clue what they are talking about, and people who mean nothing to you and are just know-it-alls and/or nosey and just like the feeling of superiority they get when they solve other people’s problems…poorly. But how other people treat you is their path and how you react is your own. And I know it’s even more difficult to stick to your path when you are in excruciating pain, feel abandoned by the medical field, and are questioning your sanity. But I think that if you are travelling a similar path as I have, take it from someone who is a little further along and keep believing in what you know is right, never stop looking for the better medical care that you deserve, and do not put any of these weirdos’ words in your own narrative because living with a chronic illness is a very rare thing that not many truly have a grasp on. I wish I would have learned that sooner.

And also flipping people off, smiling, and ethereally floating away from them. I totally wish I would have started that sooner, too.