Many, many years ago, I was given a solid piece of advice: “There’s no such thing as good decisions, or bad decisions; there’s just decisions, and you have to be willing to live with the outcome.” It resonated with me, because I’ve carried it with me all these years.
In 2011, my husband and I made a big decision to move back to the east coast. Little did I know that decision would forever change my life. Within months of starting my new job, I began getting awful migraines. Every sound was like a cannon exploding in my head. Light may have well been lasers peeling away my corneas. I wanted to vomit; I wanted to die. Every day, I’d come home from work crying and immediately crawl into bed. I started keeping a migraine journal and soon found out I was suffering over 23 of these a month.
I’m still on this chronic migraine journey, but I have learned a few things that I would like to share with other chronic pain sufferers.
Here are the lessons that I learned and pass on to those in pain.
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When you feel shitty, say you feel shitty. When you are having a good day, because they will happen (even if they’re infrequent), take full advantage of it (scream it from the rooftops!). Most people will believe you when you say you are okay. Then they will wonder why you are standoffish, lazy, inefficient, etc.
Be honest and it takes the guesswork off the table and realistic expectations can be applied to the situation. Only those who really know you may be able to read your subtle body language to see you feel like rubbish. Also, your lying isn’t doing anyone any favors. Sparing people from the truth because you think they are tired of hearing about it hurts you more than them.
Speak up! Don’t minimize or trivialize your condition; society does that enough. Be an advocate for yourself and your illness, disease, condition, etc. Not to mention, you may surprised to learn you are misjudging some of these people who are going through the same thing as you.
Stop Hiding the Pain
How many of us smile when all we want to do is crawl in bed or a hole? Stop it! Instead of turning that frown upside down, into a grin, I’m asking you to do the opposite; stop grinning. I’m sure some of your smiles look like grimaces anyway. I’m asking you to be honest and vulnerable; it isn’t easy. You’re essentially telling the world “I’m happy” and “I’m okay” when you really aren’t. Not only are you sending someone an impression that isn’t true, but psychologically, you are sending yourself mixed signals.
Drop the Guilt
Those of us in pain have so much guilt about suffering. Why? We cannot control our disease/illness. If we could, we’d drop that “ish” in a heartbeat! We already feel bad enough physically/emotionally, why pile on the psychological guilt? We aren’t building an ice cream sundae here; there’s no need top it off.
Feeling like you aren’t contributing? Help around the house on good days. Practice self-care to the best of your abilities, keep track of your medications and appointments, vocalize your needs, etc. These are all things that really do help yourself, and help others help you. Feeling like an imposition? You aren’t. The people who surround us do so willingly because they care. The people who deemed us a burden left our lives long ago, and we are better off for it.
Ask For Help
I thought I had to do everything myself and I soon fell short. I have since learned that it’s okay to lean on my husband. Find someone that you can have in your support group. My husband has gone to every single appointment of mine that I have had at Jefferson Hospital! He has gone out to get my medicine for me and other odds and ends when I have been unable to do so. He also does a lot around the house.
The point is, find a friend, family member, who is willing to assist you when needed in order to help you get what you need. Sometimes, what we really need is someone to talk to and we often minimize this necessity, so make sure you have a good confidant.
Stay On Top of the Pain
I cannot speak for everyone else, but sometimes I’m a glutton for punishment. I get sick of all the pills I take and sometimes I just… don’t take them. Or sometimes, I “wait and see” how bad the pain will get and by then, it’s too late.
With my condition, sometimes a headache is just a headache and sometimes a headache turns into a migraine. Migraine pills don’t work on headaches and headache medicine doesn’t work on migraines, so it is partially about identifying what I have and what I need to take and partially me being stubborn. If I stayed on top of my meds or took them at the first sign of pain, some of my pain could be minimized or even eliminated.
Sometimes, good days are worse than “okay” days because I feel so great that I overdo it and then have a horrible day after. Anyone else do that?