I read a blog entry here, and it resonated with me immediately. I felt like I could put my two cents worth here, since a lot of things in my life has changed, RA included.
RA is like that- unless you start doing something about it, nothing is going to change. The pain is just there haunting you and creeping insidiously into your joints. And it takes a lot of courage to give in and admit that we need help.
But the thing is, even when you actually give in and seek help, it doesn’t mean that things WILL get better. In fact that is not a promise that treatment can give you. Because nothing is ever certain. You’ll have good days and bad- sometimes you progress, sometimes you regress. Medications which will work, and some that don’t. Tests that will work in your advantage, and tests that won’t. And it is in us, if we are going to cope with it eventually, or not. Nevertheless, we are already winners in our own rights, and we deserve a pat on the back, or a hug maybe, for even trying. 🙂
It takes time, it takes patience. It takes tenacity, it takes resilience. It takes strength and courage, and it takes some acceptance on our part to trudge on. We all need encouragement sometimes, and we just have to cling onto the fragile hope that things will get better one day. Because it will, as long as we do not give up.
Looking back, this is my 5th year since I was first diagnosed, and probably the 20th year since I started to experience pain from undiagnosed juvenile RA. Sometimes I wonder how I got through all those days- those days when I was writhing in pain, those days when I could barely afford the medications, those days when I was non-compliant, those days when the side effects had a larger impact on me than RA itself, those days when my liver threatened to fail on me, those days when the stigma of being chronically ill stood in my way, and those days when I was totally defeated, physically, mentally and emotionally.
It hasn’t been easy of course, being so alone coping with my RA. I don’t know if I was coping though, because retrospectively, I guess it was just a case with a “DEAL WITH IT!” mindset. I didn’t know what I should do, other than being a good patient, going for my follow-ups, getting blood tests done as requested, and being compliant to my medications. Anything other than that, I was completely clueless, did not have the foggiest idea, and I couldn’t talk about it to anyone. It was just a ‘grit-and-bear’ stance that I had to take just to keep going, albeit very reluctantly.
After falling into depression, it started to become apparent how RA contributed to its onset. And although it wasn’t a direct precursor to my depression, it was all built up along those 4 years of pretending to cope. What a joke it is, really. Seemingly coping, yet not quite there, completely unbeknown to me till things fell apart.
I’ve never been in a remission. I’ve tried most DMARDs, NSAIDs and analgesics without much success. I’ve had multiple episodes of elevated liver enzymes. I’ve gone for periods without any RA medications. I kept on dancing ballet even through my flares. I taught children’s ballet to pay my medical bills. I’ve had days when I was dying of RA pain, yet having to go to school/work. I’ve tried going on long-term prednisolone which made me gain weight, indirectly bringing about my disordered eating, and an irrational fear of certain drugs.
I’ve had my parents tell me I’m a waste of money when I tried biologics, calling me lazy because I can’t get out of bed, and berating me for taking so many medications because it is ‘bad’. I’ve had teachers telling me that I’m finding excuses, and lamenting about my lateness (not knowing that I had to limp the whole way to school early in the morning). I’ve experienced stigmatisation just because I had a chronic illness, and having to proof myself so that I could rise above it.
I’m not even done yet. I’m still in pain today, despite the triple-DMARD therapy, and strictly taking Arcoxia and Anarex. Secretly hoping to go on biologics so that I can go into a remission, yet crossing my fingers that I will never need it because it is so darn expensive.
It’s all of these in the past 5 years that I’ve had to grit and bear, take in my stride, and accept. That I am not what I thought I would be, even though I am still very young with decades left to go. That although I am a young adult, very independent, and feeling like I can take on just about everything, I have my days when I have to just take a step back and know what I cannot do.
Chronic pain messes and affects the state of our minds. It creates chaos and stirs up a storm when there is none. It dims the glimmer of hope that once shone so bright. It steals and robs you of the joy and happiness you once had. And with all of these, it all seems hopeless, unrelenting and endless. Giving up and wanting out would seem appropriate then, and it is understandable. I’ve had those days when I just want to give up too.
But it is the knowing that giving up wouldn’t serve me well (been there, done that, regretted it many a time), that I trudge on and keep trying, along with the hope which I stubbornly cling on to.
I’ve learnt along the way, not necessarily from RA, that managing expectations helps a lot. Especially when a remission is far from sight, or when the going gets very tough. I don’t expect a remission, and I guess I’ll be fine without it. My good days are now days when I can get out of bed, even though there is pain and stiffness in several joints. I figured that it would be more realistic and achievable, and I should be kinder to myself. My bad days are now those days when I moan and groan (or wince) after opening my eyes after a night’s rest, and wishing that somehow the medications will ease them. I won’t even begin to talk about incredulous/impossible days, which I think we all know and hate with a vengeance.
Sometimes, we and our rheumys forget that there is more to RA than the physical symptoms. There is so much more we can do, emotionally and mentally, to help us along the way to better cope with RA and the changes in our lives it entails. It really is about perspective most of the time, and it would be empowering if we have both the perspective and insight to handle it.
In the end, all we want is to be ok. We may never be what we used to be, but we will be ok as long as we try and keep trying. It is a journey of self-discovery that only we can experience. And we all come out of this stronger. Don’t we?
We are all a better, stronger and wiser person today, than what we were yesterday.
(Oh golly gosh. What a long and incoherent post this is. I hope I made some sense.)