How To Survive A Flare Up

Hello blogosphere, Adam here, coming to you live from the struggle bus. That’s right folks, I got on the struggle bus earlier this week, got off for a stop or two, then promptly got back on – and my ass has been firmly planted in my seat since Friday.

To make a long story short, earlier this week I started to notice some pain and tightness in my low back. As the week went on, it got worse and worse. Unfortunately when my pain in certain areas gets to a certain point, it starts to make me nauseous. Spasms come in waves that immediately make me lose my lunch from one end of my body or the other, which makes for a rip-roaring good time. Thankfully I started a food/activity journal recently to help me identify triggers and I was able to link this all back to an exercise I added into my routine this week. It’s one I’ve done plenty of times before, just not for a while. I thought I started with low enough weight, but my body begs to differ.

So it was a rough week, but Friday night is when the shit really hit the fan (no pun intended – also who shits on/near a fan?). It was then that I knew I was in for a doozy. If I am being honest with myself, and with y’all, this is probably the worst flare I’ve had in 3 years. I haven’t left my house since Friday (expect for 2-3 very short trips down the street), I haven’t been able to keep much food down (it comes out one way or another), and my muscle tension just won’t fucking quit. I even ponied up for a massage on Saturday hoping to release some of the tension, but to no avail.

All that being said, I knew by Friday night that unless things changed overnight, I was going to be out of commission all weekend and would probably not be able to leave the house much. Knowing that, I also knew my chances of having a panic attack/mental breakdown/existential crisis were high. So I attempted to make a plan or rather some guidelines, ones I could share for others to use or to read and better understand the impact that a pain flare has on someone both physically and mentally. Here are some of the Do’s and Do Not’s I try to follow when I’m experiencing a flare-up...

DO:

• Communicate your state to others – If you feel your body starting to flare up, it is important to reach out to people you know and trust – people who are nearby and/or are able to support you. Grinning and bearing it is the motto for many of my days, but when I can feel things getting bad, I have to let people know. That way they can be on standby to help me if I need them.

• Communicate your needs to others – This is one I am awful with. When you are having a flare up, the reality is you won’t be able to do everything you need to do for yourself. And if you’re like me, chances are your physical pain brings emotional pain too. I need support both physically and emotionally, whether it be I need someone to go to the store to get my medicine or I need someone to just come over and sit on the couch while I nap/writhe in pain. Whatever it is that you need, you can’t be afraid to ask for it. And when you discover how to be courageous in asking for what you need, please teach me your ways.

• Ask for/use things that bring you comfort – You know what makes you happy when you’re feeling down. Whether that comfort is a candle, a warm blanket, a special blend of tea, a specific musical album, or a friend coming over to spend some time. Know what you need and ask for it. And again, someone teach me how to follow my own advice.

• Plan activities that match your energy level and physical needs - I knew by Saturday morning that I wasn’t going to be leaving the house much that day. I knew if I just sat around in my pain, I’d go crazy. So I made a plan. I made a list of all the things I could do that day at home and made sure I had activities that could be done standing up, sitting down, or laying down depending on my needs. I ended up baking a ton of cookies and cupcakes on Saturday that I decorated and plan to hand out to a few different people. It was an activity that I could physically do that was mentally stimulating and enjoyable because I knew I was making something for someone else.

• Have food/beverages stocked that match your needs – Food = comfort, we all know this. Sometimes when you are in pain, all you want is some fucking ice cream and fried chicken. Other times, you may want those things, but your body is not gonna let you have them. For me this weekend it’s been plain GF bagels and water all day errday because my body hates me and doesn’t want me to enjoy chicken and ice cream. Whatever place your in, make sure you have or can get a friend to get you what you need to nourish your body.

• Employ mental/physical self-care strategies as needed – Pretty self-explanatory – your body is in pain and likely you are emotionally in pain as a result. Take the time to give your mind and body the attention they need. Maybe it’s some yoga or a massage or your favorite movie or your favorite comfort food. Whatever strategies you use to keep your mind and body in line are more needed now than ever before. Give yourself what you need.

• Break into your stockpile of narcotics if you need to – If you’re like me and your chronic condition has forced you to have multiple surgeries, procedures, and trips to the ER, chances are you have a stockpile of strong AF pain medication. I don’t take anything for pain regularly and I usually stop narcotic pain relievers a few days after a procedure because they give me headaches, but I highly recommend saving those bad boys for the bad days when you just may need to break into that cookie jar of prescription strength numbing and throw one back. Of course do so understanding the risks and signs of prescription drug abuse.

• Give yourself a break – This fucking sucks, I know. I get it. It really does. Your friends are at the club having a blast and you’re stuck at home alone on your heating pad for the 3rd weekend in a row because something triggered a flare up. It’s easy to blame ourselves and to let things spiral out of hand about how much this sucks and how much life sucks. Give yourself a break. Be gentle with yourself. This is happening, your pain is real, and you’re doing the best you can to live a productive, fin, enjoyable life.

• Focus on what you can do – Our pain calls our attention to the ways in which our bodies are not functioning properly. Our pain may prohibit us from doing things physically. When things get bad, we have to focus on what we can do. For the time being, we can’t change what we can’t do so instead focus on what you still can do and use that set of abilities to go about your day. It may feel forced and may feel like some bullshit, but the fact remains that if your body is telling you that you can’t do something today because of pain, then we need to move on to what we can do so we can make the best of things.

• Connect with others who understand – Whoever they may be: other people with chronic pain, friends who are understanding, a parent, etc. Reach out to people who you know will receive your story and your hurt with understanding and empathy.

• Remember that this will end eventually – This one is tough, especially on weekends like these when I’ve been in high levels of pain for several days. But the reality is, the flare will end. It will. I’ve had flares that last a few hours and some that last a few weeks. But ultimately, they always end. Of course once they end your chronic pain is still there, but your body drops out of defcon red and you can start to stabilize again. Pain sometimes feels like it will never end, especially when you’ve had it for 5 years, but it will get better in time.

DO NOT:

• Use social media – During a flare-up, social media is my worst enemy. Instagram and FaceBook are carefully curated galleries of all the things I am missing out on, of all the things I couldn’t do today. Social media puts all the smiles and craft beer and camping and hiking and enjoyment you’re not having right in your face. It’s a no-go. It’s tough to be couped up at home and not look at social media, but I can say from experience that every time I slip up and look, I end up feeling like shit.

• Isolate yourself – Herein lies the greatest paradox of all, at least for me. When I feel like shit, I am grumpy, I am tired, and I am maybe throwing up/shitting nonstop, I maybe am having muscles spasms, what have you. The last thing I feel like doing is having to entertain someone else. And so I usually shell up and isolate myself, but guess what? Being in pain AND being alone is TERRIBLE. I am learning to be better about asking people to spend time with me when I don’t feel well because I’m afraid to burden them with my sickness and I’m afraid they’ll say no. But ultimately, being alone while in pain is the fucking worst and it heightens both physical and emotional pain.

• Feel ashamed/blame yourself – If you’re like me, you might think about what triggered your flare up and think, “God, I’m so stupid, I know better than to do that, I knew it was going to make this happen!” Blame helps no one. We all make mistakes. We didn’t as for our pain, we didn’t ask to live a life of careful calculations and trial and error situations that lead to pain like we’ve never known. It’s easy to feel ashamed and blame yourself. Just remember, you are trying your best.

• Focus on what you can’t do/what you’re missing out on - This goes along with not using social media. If you focus solely on what you cannot do and the opportunities you are missing, then you are in for a world of hurt. Are you incapable of physically doing some things? Yes. Are you missing out on some things? Yes. Is that fair? No. You didn’t ask for this, neither did I. But it not being fair doesn’t change the fact that it’s happening. We have to focus on what we can do and how we can be and stay involved even if that takes some tweaking. Otherwise, we only set ourselves up to experience more pain.

• Play the “if only” game – Sometimes during flare ups like this, I start to think about my life before chronic pain. And I always look at it through a rosey lens that makes it seem like I never had any problems before this pain. I start thinking about “what ifs” and “if only”. I think about all the things I would do if I wasn’t in pain, I think about all the things my life would be. Suddenly, my pain is the sole source of all things bad in my life. Here’s the hard truth, your pain is there. Mine hasn’t gone away in five years and to be honest, I have no idea if it ever will. So to play the “what it” and “if only” games is to play to lose. This is the reality of your life and you have to learn to live and function within it. Striving for progress and setting goals is great, but preoccupying yourself with a life that does not and may never exist is cruel punishment.

• Ignore your mind/bodies needs – This one will be brief – don’t do it. Just don’t. If you feel a flare coming or if a flare has already arrived, do not ignore the impact it is having on your mind/body. It will only get worse, so much worse.

• Allow this to spiral you into a mental vortex of doom – Let me tell you something, I have an incredible talent for letting things spiral out of control. I mean like I am an Olympian in that realm. I can take a small flare up that prevents me from going out with a friend or partner and turn it into unyielding proof that I will never find love, that I will suffer physical pain the rest of my life, and die alone. Yea, I’m that good at it. Don’t get good at this. Don’t let things spiral and infect other parts of your life when they don’t have to. You got sick (sicker than usual anyway). You missed some stuff, opportunities have passed. It sucks, but it happened, nothing can change it. You can choose to either move forward or spiral it out of control. You didn’t mean for this to happen and you’re doing the best you can. Give yourself the slack you deserve.

Some day maybe I'll take my own advice because it sounds pretty damn good. I started off this weekend strong, but I failed to ask for the companionship I needed. I isolated. And so I finally had a breakdown while folding laundry about an hour ago. Crying while folding laundry is for 1950s housewives burdened by the oppression of a patriarchal society, not for me. And it could have been avoided had I reached out and told someone that I just needed them to spend some time with me. Alas, we live and we learn. Here's hoping the doc can put me back together tomorrow. Fingers crossed for me.

Peace and love,

Adam