Most of the time, I make only brief references to my daily headaches and how that affects my life or my family life. Today, this whole post is about that. Just to get it out there and get it over with. We'll bite off the whole elephant in one post, and then get on with life as "normal."
I like to pretend that I feel fine all of the time. It's easier that way. It's easier for you, for sure, and most of the time it's easier for me. I know you don't want to think about me being in pain all of the time, and even when I am, I'd rather think about something else. The truth is, sometimes I think that if I never talk about it and never think about it, it will go away. But, that doesn't happen. It's always there, which is why sometimes it seeps out onto my blog even when I don't want it to. While most times, it's easier to ignore it, it sometimes is just too hard to ignore. Elephants are big, and chronic pain is a really big (unfortunately) part of my life. An every day, chronic, part of it.
Most of you reading this know the "other me". The me that pretends that I feel great, and can do things "normally" all the time. I'm a pretty good actor, because I don't like to let people down. I like to do things "normally", and a lot of the time, (really, most of the time) I pay for it later. This is especially true of family that lives far away. If I see you one time a year, I'll make the best of it, taking medication and using all of my energy to appear normal and without pain. The truth is, sometimes I'm feeling fine, but most of the time it's the me that's acting like I'm fine. I just never know. That's one of the hardest parts--predicting when I'll feel fine, and when I might not. It's very unpredictable. I never know, which is why it's mostly easier to medicate and pretend I'm fine than it is to cancel plans so I can sleep.
Some of you have seen the "real me". The one that is too tired to talk on the phone, or in too much pain to remember the name of the book I read last week. I've heard before, and I agree, that sometimes this acting I do, helps me feel in control. I can't control how I feel, but I can control who I let see how I really feel. That way, I am controlling some part of my chronic illness that I did not choose to have and controls my life more than I'd like to admit. I should let more people see the "real me", but it goes back to what I said before, it's just easier to hide it and ignore it. Easier for you and easier for me.
Gratefully, I have a saint for a husband. I'm sure he hates the pain as much as I do. Probably more. He's the one that picks up my day if I've used all my "good time" up. If I've used all of my good time with the girls' class in the morning ,or going visiting teaching, or just doing laundry and sweeping the floor, he's the one that makes dinner, helps with homework, all the things I want to do (okay, some days nobody wants to make dinner, but I want to be
well enough to do it, even if I don't want to do it!) King's incredibly patient and kind. He knows I do my best and he wants me to be able to do normal things, too, so he picks up the slack. My hope is that the girls will remember the fun field trips and mom who helps at school sometimes even though I know that they will also remember the mom who has to go to bed to rest or asks them to talk in hushed voices so it won't be too loud. This is what I hate the most about being sick.
Now, people, when they see the "real me" wonder what they can do to help. The thing is, not much. I've had a few fabulous friends that have brought frozen meals to help on the days when I just can't do food, and friends who have helped with cleaning, and running the girls here and there, but, the thing with this chronic headache thing is that it is so unpredictable that I couldn't tell you how I'll feel next month, next week, or even in the next hour. I don't know what I'll need, because I don't know what I'll be able to do. But I do know some things that would help if you
don't do them...
1. Don't assume if I sound great that I'm feeling great. I sound happy because I am happy. I probably still feel bad. Don't say things like "you sound like you are feeling better" and "you seemed great the other day" if I say I'm not feeling well now. Maybe I was feeling great the other day, but chances are, it was the acting thing. I know it's not fair of me, but I also
really don't like when people say, "I hope you feel better soon." You know what? I won't. This is a chronic thing. Maybe "I hope you have a better day tomorrow" would be better.
2. Don't try to "fix" me. Yes, I drink a lot of water. Yes, I've tried this natural thing and that other thing. Yes, I get enough sleep. If you've heard of a "fix", I probably have, too. I am going to doctors (admittedly, not as frequently as I could--expense, frustration, and lack of energy can all play into this, but I'm trying) and I'm doing what I can. I know you are trying to help, but it might help more if you just accepted that this is my life and something that will never go away. (Yes, of course I hope it will go away, but just accepting it for what it is helps me more.) If you must tell me about a cure, please don't be offended if I don't act excited. If it is something I think might help, I'll ask my doctors about it.
3. Don't get upset if I don't seem happy to talk to you or if I cancel plans at the last minute. It has nothing to do with you, and everything to do with me. I am going to try to do better this year about saying no when my body needs me to. Don't be offended and take it personally, please. I like to be a responsible and reliable person, so this one is hard for me. Don't make it harder on me by helping me feel guilty about things that I don't intend, or things that I just really can't physically do at the time.
4. Don't feel sorry for me. I do enough of that for the both of us. :) I really do have a great life and am blessed in so many ways. If I seem depressed about having a headache every day, I probably am. But, I am not having a headache because I am depressed. I am generally happy and try to make the best of my situation. God has blessed me in many ways because of my illness, and will likely bless me more. I try to look at the ways this can bless my girls and family rather than how it will hurt them. Sometimes that's hard. But, it would help me if you could do the same.
So, this was a long spewing of things that I hope I won't regret later. Thanks for listening (if you have, in fact, made it this far). I guess I just needed to put it out there so you know where I am coming from. I'll end with some of the scriptures that I love to read to give me perspective and give me hope and faith when I feel the worst. Maybe they can help you have a better day today, also!
20 My God hath been my
asupport; he hath led me through mine
bafflictions in the wilderness; and he hath preserved me upon the waters of the great deep.
26 O then, if I have seen so great things, if the Lord in his condescension unto the children of men hath
avisited men in so much
bmercy,
cwhy should my
dheart weep and my soul linger in the valley of sorrow, and my flesh waste away, and my strength slacken, because of mine
afflictions?
James 5: 1111 Behold, we count them
ahappy which
bendure. Ye have heard of the patience of
cJob, and have seen the end of the Lord; that the Lord is very
dpitiful, and of tender
emercy.
Alma 33: 111 And thou didst hear me because of mine
afflictions and my
asincerity; and it is because of thy Son that thou hast been thus merciful unto me, therefore I will cry unto thee in all mine
bafflictions, for in thee is my joy; for thou hast turned thy judgments away from me,
cbecause of thy Son.
2 Cor. 4: 14-18 14 Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you. 15 For all things are for your sakes, that the abundant grace might through the athanksgiving of many redound to the glory of God. 16 For which cause we faint not; but though our outward man perish, yet the ainward man is renewed day by day. 17 For our light aaffliction, which is but for a moment, worketh for us a far more exceeding and beternal cweight of glory; 18 While we look not at the things which are aseen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not bseen are ceternal. 3 And now, O my son Helaman, behold, thou art in thy youth, and therefore, I beseech of thee that thou wilt hear my words and learn of me; for I do know that whosoever shall put their atrust in God shall be supported in their btrials, and their troubles, and their afflictions, and shall be clifted up at the last day.I did some researching and found some articles I read a few months back that I really thought were helpful to me and to those who know someone with chronic illness. Some of my thoughts here seem to reflect those in the articles, so we're definitely on the same page and I should give them some credit. You can see a letter written to those who know someone in pain here, and a couple of essays here and here.