In my last post here I went through a few of my best tips on how to manage getting out and being active while you’re stuck in pain or discomfort. The post didn’t go in to great or specific detail, it was just an overview of very general things to do to make being mobile, leaving home and perhaps enjoying a more busy time. There are a lot of little things that are more illness or body part specific that I didn’t cover and that was on purpose (maybe something to keep myself occupied with in the future…).
There was also one HUGE thing I left out. Really the hardest one, the one we probably skip the most. The one that ends up having the worst backlash. The one that in the past has downright sent me for a hospital trip multiple times *fingers crossed* never again.
IF YOU TRULY DON’T FEEL UP FOR IT, DON’T GO!
I apologize, honestly. It’s not like anyone has brought it up or assumed I meant no matter what the circumstances get your ass out of the door. I noticed it myself last night. As a pre-migraine was starting to hit in and I had Mr. Mango help me prep for today knowing how bad it might get. I planned to write a small edit at the bottom of the page, to make sure it was understood that it wasn’t the impression I was trying to give.
This morning however made me change my mind, to really iterate this really important part of how to be active while in pain. SOMETIMES YOU DON’T.
I woke up in tears today. Something was making it feel like razor blades were being run through the center of my brain and it felt like molten lava pouring out of my ears. There was some siren going off next to my head and it was too much for me to handle. After about 20 minutes of being able to slightly handle life again I managed to cognitively understand that it was my stupid phone ringing. It wasn’t my ever so pleasant quiet beautiful alarm going off (the Forrest Gump theme) it was La Bamba. Now normally it makes me laugh that my Dad’s ringtone is the song that was #1 on the North American charts back on the day I was born but this had me wishing I never had been born.
He (my dad) has been having so much fun coming out and spending time with us the last few months a lot more often before and has been increasing his visits to a lot more than helping take me to doctors, celebratory get-togethers or helping us with the deck. After I managed to get my shit together enough to try and look at caller display and piece it all together, I hit call and speaker (much gentler than his voice piercing into one ear) just in case. My grandparents are getting up there in age and well he himself is going through a horrid divorce and who knows what might be going on. If there’s bad news I need to hear it. It wasn’t bad news, he just wanted to ask if on such a nice day we all wanted to head to the beach.
I love the beach. The kids love the beach and goodness knows someone there to keep them entertained would have been nice. I even like hanging out with my dad (which anyone who knew my teenage hears would be amazed to hear) but I’m in no condition to go out today. I love my dad, but he has a knack for being good with guilt-ing. This really got me thinking, it’s imortat to stress that when we are not feeling well enough to go out, we have to stand firm.
Whether it’s guilt from a friend or relative for not sucking it up or finding a way to make it work, our own personal guilt that we’re letting people down, a feeling of obligation if it’s been planned for a long time, a sense of cabin fever like we just need to get out already, it doesn’t matter. It’s hard to say no when you actually want to do something and can’t/shouldn’t, but we have to.
Saying no to others has it’s challenges, do they understand what’s stopping you? Do they actually understand your disease and the symptoms that may effect your mobility or ability to go outdoors? Do they think a migraine is just a headache, that arthritis is just a some stiffness, that IBS is just a stomach cramp, that an anxiety disorder is just being a little worried, that depression is just being a little down? Even when people don’t intend to, they can really step in ‘it’ when trying to convince a yes. Unless someone truly has been through that kind of pain they have a hard time grasping how much discomfort your body has to handle, that if you could you would and if the pain was minimal enough, you’d fight through it. They may go so far as act hurt that you’re saying no (either on purpose or by accident) and oh how crappy that guilt can feel.
Two things I feel can help there. First is to say “well my doctor says….” I shouldn’t be walking more than needed when my joints are this inflamed, that I should avoid light and loud noises when I have a migraine, that I should stay indoors and rest when my lupus flares up, that I should stay close to a toilet when my IBS is triggered etc. Its amazing how a lot of people would rather take your doctors word for it than yours.
If that doesn’t work or if you know you’re dealing with a hard cookie to crack, there’s one little white lie that usually makes em want to keep their distance. Now for some, it may not be a lie at all, it truly is part of why you can’t go out, kudos, you’ve ‘lucked’ into the one thing that people seem to actually acknowledge as a reason to not go out. That is stomach woes. If someone knows that it’s shooting out of both ends, busted plumbing style, they’ll be happy to let you stay at home, alone, away from them. People aren’t comfortable talking bathroom trouble and they definitely don’t want to risk the chance of a visual. Even if that isn’t a deterrent they certainly can recall a run in with food poisoning or the flu and relate to what you might be going through. That sympathy can help them take it seriously.
Self guilt or feeling of obligation may sound like something that’s easier to handle than someone begging and pleading for company, but honestly it can be the harder one to battle. When you’re chronically ill and in pain, your body prevents you from doing so much, too often. It can really be mentally frustrating and even cause bouts of depression. I feel a lot of the time that I’m missing out on so much, that I hate my body, that people are going to dislike me, that my kids are going to blame me for a lackluster childhood and I worry that when I look back on my life, it’ll look like not much at all.
Be gentle to yourself. Think about the possible future outings that might be possible because you chose to rest the one day you were hurting the worst. Make plans with yourself or others for a future time to do something similar, or a compromise of something you know you’ll handle better. Remind yourself that treating your body with love and respect is more important for your well being than one day pushing way past your limits.
Maybe if I had been a little more cautious by the end of this past weekend and taken a little better care to not over do it, I wouldn’t be having such a rough day. Who knows. Either way, I made the smart decision now. I would have been miserable, I would have made my symptoms worse and would have definitely been in for a day 2 and/or 3 of it (meaning I would have had to cancel a camping trip planned and skipped my scheduled doctors apt.) and honestly my pain and discomfort would have effected how much fun everyone else could have had.
I knew today was one of those days where I COULDN’T be active while in pain, and that is OK.