It Doesn’t Get Better, It Gets Different

I feel as though I’ve written about this before, yet I can’t find a single shred of evidence that I have. Maybe the feeling and the idea has just been with me for so long now.

I was very recently diagnosed with Rheumatoid Arthritis. After suffering for nearly 12 years with no name for what was wrong with me, I finally earned myself a Fibromyalgia diagnosis and proceeded to fight for proper care and treatment for another 15 years. That’s when I met the team who cared enough to listen. And because they did that, I am now being treated for RA.

I began my treatment in the beginning of summer and I could feel the difference with the very first injection of methotrexate. I know it takes around 8 weeks to feel the full effects, but I most certainly felt something change for the better immediately. The week after I found myself lazily coloring with my 3 year old nephew out of the blue and it took until we were nearly done for me to remember that I hadn’t been able to color, draw, paint, or write by hand for about 10 years. I caught myself doing origami with my son. I even French braided my hair. I wasn’t forcing myself to try any of these things; I was simply doing what felt natural at the moment. And then the medication began helping me so much that I eventually went overboard – but boy did I enjoy it.

What I didn’t enjoy, though, was the after effects of overdoing it. At one point I ended up writhing and rolling on the floor, crying in pain, after cleaning way too much of the house. I scared my son. I scared myself. It was time to calm the hell down and realize that even though I sometimes felt like my old self, I wasn’t my old self.

And that is the paradox of “getting better” when you have a chronic illness.

I soon started Enbrel in addition to the methotrexate, and it has been an entire world of difference. I’ve driven to see my sister more times since starting it than I have the whole year prior. I took my son to Great America twice, but the second time I ended up in laying down in pain my sister’s van for the second half of the outing. I’ve been able to play my guitar, something I had to give up 6 years ago. And my daily level of pain is down significantly – I can just “be” and not be in agonizing pain much of my day, unless of course I’m in a flare.

And that all sounds amazing, right? And it is amazing! Except that the actual change in my daily life isn’t much of anything.

I still cannot work because my symptoms are still wildly unpredictable. Fatigue has been crushing me since I started these meds and I often lose an entire day to sleep. These meds make me highly emotional, so I cry about nearly everything right now. I still can only use my arms so much – even if it feels ok I have to set strict limits so that I don’t overdo it and hurt myself. Things are so much better for me right now yet in so many ways they are exactly the same that I almost want to stop saying that I feel better and instead simply say that I feel different.

And I do feel different. I can have a day where I do nothing and not be in pain and it feels so damn amazing, but the guilt always sets in. I should be doing something. The house needs cleaning. I should take my son somewhere. I’m feeling fine so I should take the opportunity…and so on. Well I’ve taken the opportunities and abused them so many times now that I don’t really trust myself anymore, so I save it for really special things that are totally worth the pain. But that leaves a lot of days where there is just nothing… and it is driving me insane.

Now here is something I do recall writing about before – not knowing what to do with myself. Wanting to be productive so badly but being physically incapable of doing so. And now that I’ve gotten a taste of the old me I feel like I had an addiction to accomplishing things in my old life and now I’m relapsing.

I had a really, really good run once both of the new meds  were working in my system and ended up feeling great for a few weeks in a row. So I ignored the new calm the hell down rule and tore up my rug and painted my table and organized drawers and then fell into a flare right in the middle of it all and woke up one day in a werid foggy pain, barely able to walk through my dining room because of all the projects I started at once, and immediately felt overwhelmed in a very, very awful way. Having to stop hit me hard. I thought I knew my new limits but they were as unpredictable as before, and I fell into a bit of depression because of it. I’m once again climbing out, just as I was the last time I wrote about wanting to be productive. But having to live with the mess I made while trying to be productive was possibly even worse than the flare itself.

So I’ve had to make some very hard choices about what it means to be feeling better, er different, and what I want to feasibly do about and with it. I think the only good that has come of it all is that I have finally decided I am done using my better for cleaning and projects that are simply too big for me and will be finally getting help.  I even decided to let go of grocery shopping and used an order online and pick up at the store service today just so I didn’t have to lose an entire day to groceries. And it felt amazing!! I was able to put all my groceries away as soon as I got home, something I can never do because I’m either crying or in a pain coma. But I put them away, made myself a great cup of coffee, sat down feeling very accomplished and pleased with myself… and proceeded to have *nothing* to do for the rest of the day.

It’s not easy finding the balance here. I know I’m done torturing myself and that I’d like to use my feeling better for good, like for myself or for my child, but when my son isn’t home there is quite literally nothing for me to do. Because I don’t really have a life anymore. So I don’t know what to do!

Yes, this girl needs a hobby. I love music and have been able to get together with my father and a few other good musicians and play about once a month since my new meds, so there’s that. But it’s not enough. I love writing, but I am limited to about 30 minutes on the computer before I cause myself serious pain. That is the same problem I run into with working on my podcast – limited computer time. I can only work on it for so long. I read somewhere that I should get on a schedule and I thought “Yes! This is the answer!” and then I laughed myself silly. The problem with being on a schedule is that it works great until you are in flare and lose two whole weeks to it and reemerge from the pain cave just to start all over again. Hence half the reason why I don’t work – schedules. If you can’t stick to it, what’s the point? I’d need like three different schedules. One for good days, one for ok days, and one for flare days. Who does that? Me? Maybe? No. No. I’m not doing that.

I suppose if I could sit around and not do anything and just be happy doing that my life would be pretty good right now. I hate to come off as not being happy for having less pain, and please know that couldn’t be further from the truth. It’s simply that less pain and more fatigue and unpredictable limits brings more problems that need to be solved – problems that I do not have the answers for because I’ve never been here before and I’m simply doing the best I can. I find it as freeing as I find it frustrating. I’m as happy as I am irritated and lost. I’m as clear as I am confused.

This is a very strange place to be.

It’s certainly different.