This is freakishly long…go get something to snack on. It will still be here when you get back.
I haven’t spoken a great deal about my spondyloarthropathy, but someone new and very special to me in my life was asking “Bruce” what was “wrong” with me, and I thought this was a great time to talk a bit more about it. Don’t take offense with the wording; I’m so blessed to have this person in my life now, but they are new to being Facebook friends with me, and as such, is a bit behind on some of the conversations I’ve had over there about this over the years. I knew exactly what they meant though. Trust me, those with this disorder often ask the same of ourselves…”What IS wrong with me??” Seriously, it can be baffling and confusing to live in a body that can just bop along all happy if somewhat sluggish, then suddenly revolt and decide that excruciating pain and Tin Man impersonations are the order of the day.
The timing of the question was excellent, because thanks to the incoming storms/heavy rain, a friend and I were having a conversation yesterday about how some of us seem to do such a lovely job of predicting the weather more accurately than the local weather guys…when the bones, joints, or muscles start to tighten up when bad weather is coming. Some feel it is the damp, others believe (and science is just starting to back this one), that it is the drop in barometric pressure that triggers the discomfort. The pressure drop seems to get to me the most, and the heat was tough for me to handle before starting the Enbrel. Heat increases inflammation, and inflammation, unchecked, not only increases pain but puts you at greater risk for joint damage. Cold on the other hand, might make my muscles and tendons slower to warm up in the mornings and bit stiff at times during the day, but it is FAR easier on my body. Typically, a slow morning yoga sequence gets me on my way during the cooler months, but honestly, waking up exhausted is so…well…exhausting during the heat and humidity of our Virginia summers.
The sort of spondyloarthropathy the boys and I have (Undifferentiated spondyloarthropathy or USpA for short) affects the connective tissue and not the joints themselves (enthesitis are the points where the tendons and ligaments attach to the bones..this is where we’re affected). It explains why as a child, I would get horrific leg pains…it was the tendons pulling on the growth plates of the bones. Not every pain is “growing pains”, which even the docs said they didn’t think it was when I was a kid. Had them totally stumped. Even into my early 30’s, the rheumatologist said he could only call it a sero-negative arthritis (which means having arthritis without it showing up in the bloodwork), however, the doc I had at the time said flat out it couldn’t be spondyloarthropathy, as it only affected old men. Shame when the medical community doesn’t keep up with their own research; it would have saved me nearly 8 years of suffering and damage needlessly. We’ll skip the entire “how I was finally diagnosed story”, but suffice it to say, I love living in a city with one of the top teaching hospitals in the country!
Unfortunately almost all variations of spondyloarthropathy affect the spine. My lower back is toast, as is my neck, but here’s the thing. I can whinge and moan about it, or I can continue to be proactive and do everything I can to stay healthy and active. My rheumy credits my activity, especially yoga (which I am sorry to say I’ve neglected recently…) with keeping me so mobile, active and flexible. Yes, there is a chance that at any point in time the Enbrel will quit working its magic, and I’ll be left scrambling to find another medication that slows the progression, but in the meanwhile, I am going to do everything I can to take control over this, rather than it taking control over me. I truly feel for those who are unable to get a handle on this disease medically due to circumstances beyond their immediate control (insurance issues or medical incompetency).
But perhaps I am most concerned for those who have the services and means at their disposal, but who are unable to mentally take charge of the situation. I’ve always been a “strong person” mentally, and at times that has admittedly been my downfall. But whenever I’ve been faced with a crisis, I tend to have a quick cry about it, time and urgency for action permitting, then, I dust myself off, and ask myself what I can do to take control back. Sometimes, having a slight issue with control pays off! I recently got a bit of news about the progression that occurred while I was off the Enbrel for a bit, that sent me briefly over the edge. It was a true relationship test that “Bruce” had to witness me having a pity party for about an hour, but as I’ve come to expect from him now, he was rock-steady, calming, and just asked me the same questions I knew I would have asked myself if he hadn’t beaten me to it:
- What exactly did the doctor say?
- What should you do now?
- What can you control?
- What is out of your control?
- Then do it.
Honestly, how does he know me so well? It’s like we’re soul mates or something (although I know he’s really been placed here right now by God to take care of me and for me to take care of). So when I encounter others who are desperate for this disease to just go away, I have to wonder where their support system is and why they feel so alone and helpless. I try to do what I can to offer my support through our closed Facebook group (closed to protect their identity and our very frank conversations). I decided some time ago that I would not hide this journey with USpA in spite of the risk of discrimination or judgment. Instead, I knew I wanted to lend my ear, heart, and encouragement to others who may be struggling with challenges. You are never truly alone if someone is willing to listen.
But a word of caution is in order. If you are a care-giver/spouse/partner/friend of someone with a chronic illness, you have to set some boundaries with the person you care about. Take time out for yourself and your friends/interests too. Having sat both sides of the caregiver/receiver fence, I understand all too well that you can give until you crash and risk becoming resentful, or even falling ill yourself. Do not feel guilty about taking a break; think of it simply as recharging your batteries so you can be as effective as you possibly can be. “Bruce” has the most wonderful way of asking “What can I do to help your day end so you can relax?” We’ve both been at work, we’re both tired, but he knows that being a woman, I’m going to keep going after every little thing I see that wants doing until it’s done, or I keel over, whichever comes first. What might take me two hours at the end of the day, takes the pair of us about 30 minutes, tops. How cool is that?! So caregivers, ask, in novel ways as Bruce has, how you can help without making your partner feel dependent. That’s critical, as few people enjoy feeling helpless.
For the person on the receiving end of the help, I’ve got some advice for you as well. Don’t be a wet rag all the damn time. Yes, you are faced with challenges that perhaps your caregiver/partner will never quite understand, and perhaps you are living with obscene amounts of pain, but guess what? Everyone has a cross to bear. Practice being thankful and thanking your partner. You don’t have to literally say “Thank you” at every little thing they do, but a smile, a hand on the arm, a back scratch, giving up control of the remote, being okay with a less than Martha Stewart perfect house, appreciating efforts at cooking or cleaning up…these all let your partner know you appreciate what they do. Laugh. Once in a while, force yourself to do something you don’t feel like doing. Sure, you might be exhausted at the end, but you know what? Take an extra dose of meds before you go, take a nap before or after, but especially have a frank discussion about the possibility of needing to take breaks or even leave early. I honestly can’t tell you the number of times I’ve gone ahead and pushed myself, and then ended up having a blast. I have gotten more intuitive though about knowing when I really do need to back out of something, and I’ve also learned another very important lesson. Forgive myself for having to say no. I think though that since that doesn’t happen very often, my friends and family have gotten the message that if I do say no, it’s a rough day/week whatever, and that they just need to let me recoup a bit so I can be there for when I am needed as well. And here is another important tip in my opinion…think before you open your mouth. What is coming out? Is it constant complaints or do you temper the Grumpy Cat days with moments of positivity? If you’re more grouch than grinning, then force yourself to do/say something positive. It supposedly takes 21 days to form a new habit, but trust me, it doesn’t take long before you start to feel the benefits of a more positive outlook, and you will be less likely to drive your support system away. It is very stressful, confusing and scary to be a caregiver/partner to someone with a chronic illness; it is very easy to walk away. It is extremely difficult to stay, so don’t for one moment take for granted those who do, and forgive those who try but have to leave in the end. Not everyone is cut out for the task no more than everyone is capable of hiking the Himalayas….it takes a certain mindset, heart, and fortitude to do it. Yes, I completely understand that there may always be someone(s) in your life who just won’t get it. Decide if they are worth your energy to worry about. Think about it.
So I hope this has been a bit helpful, hopefully quite informative, and I wish you well with whatever you may be facing in your own life. Please don’t hesitate to share your thoughts here. No flame wars though…I don’t tolerate personal assaults on anyone, myself included. Ain’t nobody got time fo dat!