"Opportunity often comes disguised in the form of misfortune,or temporary defeat."-Napoleon Hill
Though a typical "self-help"quote, I think of this much deeper. For years I have waited for "my time" to come. Having been sidelined by sickness at 19, I had to withdraw from college and struggled to keep my full time job. I often spent my lunch hours resting on the break room floor in the dark. I would come home and go straight to bed. I had a very limited social life, except for the many doctors I met and the clients at work. When I did go out and have fun, I paid for it the next day, and the cycle continued until I was about 23 and went to Ann Arbor for treatment. I was never really "well" after that, still struggling with debilitating migraines for years, actually until I found a doctor just a few years ago. I know what it is to miss out on everything you want to do and people you want to see. I know what it means to lose relationships because you can't keep up with them or fulfill them the way they expect. I know how it feels to watch your future goals go up in flames because you just can't focus or stay well enough to stay in school. I have known defeat for a really long time, and yet I haven't stayed down forever. I still made plans. Call it denial, call it strength,but I don't stay down for too long to this day.
As I look back on those goal-sucking days, I've also seen where they have given me opportunities I may have otherwise missed, and found people I may not have met had it not been for my hardships. In other words, this mess has been blessed, even if I couldn't see it at the time.
As I would overcome one health hurdle, another would come along,and I'm not going to give you this speech about how I embraced the challenge and thanked God for the test. Nope. I did not! I questioned Him, got mad, had a pity party or two, got strong, got weak again, lost a little faith, found it again, grew a little understanding, found a different purpose, grieved for the life I left behind,accepted it,and moved on. Do I sometimes slip back and look a little too long at what I lost? Yes. And then I am reminded of how far I've come. And as my friend Norm wrote in a blog post he sent to me, "Turn Your Faith Back On", "May our God remind us of the giants we have slain and the victories we have won in the Lord's name. Yes, we are more than conquerors, through Christ,who gives us the victory!" Those words have rung in my ears many times as I speak to myself and to others. Don't forget the giants you have already slain! Don't sit too long and think about how bad things look or feel. The world has me convinced that I'm in bad shape. According to medical reports and some of the negativity on my support groups, I'm doomed! How easily I'm persuaded in my weakness that there's no hope, when I know better. God IS my hope and my healer and because of Him, all of this has a purpose. He has me in the palm of His hand. He knows the outcome already. He knows our favorite question is Why? It's mine. Why why why? But I'm still learning it's about trust and patience and obedience, and all the things I stink at most of the time. (you may laugh out loud. It's ok)
Why do we always assume the worst? When we are assured that He wants our best?
I'll be the first to admit that when you're doing everything you can to promote yourself to good health and you STILL are not in good shape because quite frankly, interstitial cystitis has a mind of it's own...it can be so painfully frustrating. So hard to trust. So hard to not feel alone when no physical human being in your life understands, sometimes even your physician is short with you! It's a very lonely disease. And yet, God walks beside us. He knows every pain and every tear. Every frustration, every hurdle, every injustice in our care is known to Him.
I was given this particular life for a reason. I am compassionate with others who are chronically ill, in fact, I find them to be some of the kindest people I've ever met. While I used to be physically strong and not so strong mentally, I've found the tables are turning. I've had to become strong not only to endure the pain of others in my family, but to endure my own and not bury it, but face it. A completely new concept for me. Crying was a new concept for me until 2014! The Lord has changed me and continues to change me and use my weaknesses to show me that I can be strong, regardless of what slows me down. What will become of this? That remains to be seen. My job is to continue to see that it's not a punishment,look for the blessings, and continue to thank God every day. No matter what.
Staying positive is not easy. Asking God for help is also not easy sometimes. Having pain nearly every day is no picnic. I did not plan on my life going in this direction, nor would I wish it on my worst enemy. Sometimes I wake up and for just one moment I forget I have this awful condition, but then I remember, and honestly, I go through times where it is really hard to get out of bed. But I do. And I go on. I try very hard not to submit to this disease or its mental counterparts. I know that every time I make it through one of those hard times,I'm stronger for the next hurdle, whatever it may be. Praising God for the book of Job. It's gotten me through many times! Thankful for God's Word and the people He has placed in my life to remind me I'm not alone, I'm not doomed,healing is possible,and I don't have to be depressed. In fact, I have many things to be thankful for every day!
Blessings to you and may God be with you through all of your hurdles. If you are reading this, I am thankful for you too!
Wednesday, October 2, 2019
Thursday, September 19, 2019
50 and Unapologetically Me
Have a seat at my kitchen table. Here's your coffee and cinnamon roll. This one's personal...
Wow. Where have I been lately? I have missed writing here! Summer went by way too fast, and fall is creeping in like a sneaky sneakerkins, and I turned 50 last week! I aged while you were waiting for me to post again! As I enter this new colorful season and also a new season of my life, I find myself making some major changes, though not visible to anyone but me.
I decided I have spent way too much time worrying about what others think. I have spent too much time trying to please others, keep the peace, not upset someone, blur my boundaries in order to maintain a relationship, caring about who cares about me and who doesn't,and many other things that stole my own peace. I was accepting less than I expect and who does that? Someone who doesn't love themselves enough to set healthy boundaries. Someone who needs the approval of others. Someone who is afraid to let go and reach for the unknown. Someone who hasn't been trusting the voice inside of her enough for way too long. Someone who needs to spend more time with God and less time listening to the world. Well....SCREEeeeeeCH! Those are my brakes you just heard. Who do I want to be? Who am I from here on out? A fifty year old who knows herself or a fifty year old still searching and still being disappointed? I think I know which one I am going to be!
I have that darn ole chronic illness of mine, and I have enough pain and fatigue just fighting that almost every day. I decided that on my good days, I don't want to spend it with negativity, and I started to notice that negativity in areas of my life. With certain people, with certain activities, and my own thought patterns. I do have control over my own interactions, thoughts, relationships, activities, and actions. I may not have control over the way my body wakes up every day, but I can approach it without all that other stuff in the way!
People don't realize the energy it takes for a person who has any chronic condition to function physically, let alone socially, emotionally, and every other -ally. For anyone to criticize you for not showing up to their event, without first understanding your need to spend time with your family when you are well, or recharge your batteries tells me they don't respect your friendship or the boundaries you have in place. I love a friend who understands that I may feel great at 6pm, but start flaring at 7pm! I love a friend who understands that I may cancel plans because my kids decided to come home and surprise me. Any new empty-nester gets this. It's lonely! When my kids come home, I need them! I'm not going to apologize for wanting to be with my family. I'm just not. I love a friend who respects my priorities as I respect theirs. Please be understanding of people if they can't come to all of your functions or if they cancel last minute. Try not to take it personally. Grace is a wonderful gift to give someone, especially if you know they already miss so many things! I'm lucky to get out to the grocery store! And I only go there because I'm sure of where the bathroom is...sigh. I should add that I'm tired of explaining....
I'm also setting goals to find time for the things I enjoy that involve me. Just me. What helped me do this was writing the foreword for Norm's book this summer. It made me realize I hadn't done anything that didn't involve doing something to help my husband for his work, my kids for their school, my mom for her church, my home, the yard, or a friend for something else. I rarely get to the things that matter to just me. Don't get me wrong, I love to serve others! But- I need my own goals too. I have pushed myself aside for so long that I don't even know what I like to do anymore. I'm just ready eddie for whoever needs whatever! It's no wonder I can't sit down and find time to write! I don't prioritize myself as far as life goals. I know other women in this predicament as well. And before you think it's selfish to do so, I used to think that way too, hence the reason I don't have a life of my own! It's not selfish. It's necessary. I'm tired of not having things that pertain to "me" and "me" alone, and it's not as easy as I thought it would be, even with the kids away at college. Now I realize part of that is dealing with my illness. I don't have as many good days as I would like, having not entered into remission yet. When I do have a good day, I have a whole bunch of work to catch up on! This illness zaps my energy and abilities, and I don't like to go on and on about that. But it is worth noting that it's like having bricks tied to your feet and trying to win a race with world class sprinters. And there are a lot of people out there just like me. And they look normal on the outside too. I'm much more mindful of the overtired, overworked, overwhelmed, under-stimulated person out there.
Life is more than this! God made us with a purpose, and it's our job to go after that with a passion. This is my goal.
Fifty brought with it some challenges,but my strength has increased. As you may be able to discern, I've become a little more strong in verbalizing my thoughts. I don't think that's a bad thing, and as you get older, life gets shorter. I think more people should say how they are looking at a situation, or how something made them feel. The undertow and the undermining people carry around is so evident, why not speak it instead? Why not say your disappointment and say it in a way that it can be relieved or worked out together? Why not verbalize your anger respectfully instead of going silent? Why not state your position instead of folding your arms and unfriending everyone?? I don't get why people are so afraid to just be what God made them to be-thinking, feeling, emoting, speaking humans. Do we lose control sometimes? Of course, and then there's a thing called Grace. We need maturity to get us through life,and understanding, and compassion and forgiveness for others and ourselves. I know it's not always simple. I've made so many mistakes with people and most of them didn't let me rectify them. But you know what? That's on them, not me.
My mistakes were made because I was insecure,and I think a lot of people feel that way. They just want to know they belong, and so many people just aren't willing to give that away. I gave away so much love to a person that I hurt myself in the process! I did this time and time again with people,and I stopped kicking myself for it after awhile,because I realized something. I was made to love. But not everyone was ready for that love I was trying to give. I wanted to be that "Special whatever" to someone because it was such a void in my life, and I was willing to blur all my boundaries for those people, but in the end, I missed all the red flags because I didn't see that I wasn't loving myself enough to see it wasn't real. This is huge, friends. It was a huge revelation to me, and it helped me get over the loss of some (what I thought were)very dear friends to me. I would have moved the sun and earth for them,but when I really needed them, I could see I wasn't as important to them. I needed God to show me that I was the one going wrong so that I could fix me. I now keep my boundaries safe and it is harder for me to make friends because I don't reach out as much (hard to get out when you're chronically ill anyway),but that's okay too. I always say I'm my own best friend and I enjoy my company very much. I'm delightful and I'm hilarious. LOL.
At 50, I still have a very small circle of friends,but I feel loved finally for who I am, because I am able to be completely myself with them, and no matter how warty and imperfect I am with them, there is nothing I can do that would make them stop loving me. One of them has been with me since childhood. They have been with me through the deaths of my precious family members,my illnesses,and now I'm going to walk with one as she just lost her mother this past weekend. But this is how God has redeemed those lost relationships in my life. He helped me realize who I am, who I was trying to be, and brought me new people who appreciated the love I freely give. I know what it feels like to be given up on, and I know what it feels like to be appreciated.
I'm a bit regretful that it took me all these years to figure things out, but I guess I've always been a late bloomer and people tell me I look young all the time, so why not "50" to start over, right? For now, I am planning to enjoy the fun my 50's will bring. Maybe weddings? Grandchildren? Trips? A move? Weight gain from menopause? A cure for IC? Another dog? A published book?? OOH!! The possibilities have me very excited to start this next decade. What I won't be doing is giving up on me, selling myself short, spending time being negative,or wasting time being anything less than what I was made to be!
Blessings to you and yours!
Wow. Where have I been lately? I have missed writing here! Summer went by way too fast, and fall is creeping in like a sneaky sneakerkins, and I turned 50 last week! I aged while you were waiting for me to post again! As I enter this new colorful season and also a new season of my life, I find myself making some major changes, though not visible to anyone but me.
I decided I have spent way too much time worrying about what others think. I have spent too much time trying to please others, keep the peace, not upset someone, blur my boundaries in order to maintain a relationship, caring about who cares about me and who doesn't,and many other things that stole my own peace. I was accepting less than I expect and who does that? Someone who doesn't love themselves enough to set healthy boundaries. Someone who needs the approval of others. Someone who is afraid to let go and reach for the unknown. Someone who hasn't been trusting the voice inside of her enough for way too long. Someone who needs to spend more time with God and less time listening to the world. Well....SCREEeeeeeCH! Those are my brakes you just heard. Who do I want to be? Who am I from here on out? A fifty year old who knows herself or a fifty year old still searching and still being disappointed? I think I know which one I am going to be!
I have that darn ole chronic illness of mine, and I have enough pain and fatigue just fighting that almost every day. I decided that on my good days, I don't want to spend it with negativity, and I started to notice that negativity in areas of my life. With certain people, with certain activities, and my own thought patterns. I do have control over my own interactions, thoughts, relationships, activities, and actions. I may not have control over the way my body wakes up every day, but I can approach it without all that other stuff in the way!
People don't realize the energy it takes for a person who has any chronic condition to function physically, let alone socially, emotionally, and every other -ally. For anyone to criticize you for not showing up to their event, without first understanding your need to spend time with your family when you are well, or recharge your batteries tells me they don't respect your friendship or the boundaries you have in place. I love a friend who understands that I may feel great at 6pm, but start flaring at 7pm! I love a friend who understands that I may cancel plans because my kids decided to come home and surprise me. Any new empty-nester gets this. It's lonely! When my kids come home, I need them! I'm not going to apologize for wanting to be with my family. I'm just not. I love a friend who respects my priorities as I respect theirs. Please be understanding of people if they can't come to all of your functions or if they cancel last minute. Try not to take it personally. Grace is a wonderful gift to give someone, especially if you know they already miss so many things! I'm lucky to get out to the grocery store! And I only go there because I'm sure of where the bathroom is...sigh. I should add that I'm tired of explaining....
I'm also setting goals to find time for the things I enjoy that involve me. Just me. What helped me do this was writing the foreword for Norm's book this summer. It made me realize I hadn't done anything that didn't involve doing something to help my husband for his work, my kids for their school, my mom for her church, my home, the yard, or a friend for something else. I rarely get to the things that matter to just me. Don't get me wrong, I love to serve others! But- I need my own goals too. I have pushed myself aside for so long that I don't even know what I like to do anymore. I'm just ready eddie for whoever needs whatever! It's no wonder I can't sit down and find time to write! I don't prioritize myself as far as life goals. I know other women in this predicament as well. And before you think it's selfish to do so, I used to think that way too, hence the reason I don't have a life of my own! It's not selfish. It's necessary. I'm tired of not having things that pertain to "me" and "me" alone, and it's not as easy as I thought it would be, even with the kids away at college. Now I realize part of that is dealing with my illness. I don't have as many good days as I would like, having not entered into remission yet. When I do have a good day, I have a whole bunch of work to catch up on! This illness zaps my energy and abilities, and I don't like to go on and on about that. But it is worth noting that it's like having bricks tied to your feet and trying to win a race with world class sprinters. And there are a lot of people out there just like me. And they look normal on the outside too. I'm much more mindful of the overtired, overworked, overwhelmed, under-stimulated person out there.
Life is more than this! God made us with a purpose, and it's our job to go after that with a passion. This is my goal.
Fifty brought with it some challenges,but my strength has increased. As you may be able to discern, I've become a little more strong in verbalizing my thoughts. I don't think that's a bad thing, and as you get older, life gets shorter. I think more people should say how they are looking at a situation, or how something made them feel. The undertow and the undermining people carry around is so evident, why not speak it instead? Why not say your disappointment and say it in a way that it can be relieved or worked out together? Why not verbalize your anger respectfully instead of going silent? Why not state your position instead of folding your arms and unfriending everyone?? I don't get why people are so afraid to just be what God made them to be-thinking, feeling, emoting, speaking humans. Do we lose control sometimes? Of course, and then there's a thing called Grace. We need maturity to get us through life,and understanding, and compassion and forgiveness for others and ourselves. I know it's not always simple. I've made so many mistakes with people and most of them didn't let me rectify them. But you know what? That's on them, not me.
My mistakes were made because I was insecure,and I think a lot of people feel that way. They just want to know they belong, and so many people just aren't willing to give that away. I gave away so much love to a person that I hurt myself in the process! I did this time and time again with people,and I stopped kicking myself for it after awhile,because I realized something. I was made to love. But not everyone was ready for that love I was trying to give. I wanted to be that "Special whatever" to someone because it was such a void in my life, and I was willing to blur all my boundaries for those people, but in the end, I missed all the red flags because I didn't see that I wasn't loving myself enough to see it wasn't real. This is huge, friends. It was a huge revelation to me, and it helped me get over the loss of some (what I thought were)very dear friends to me. I would have moved the sun and earth for them,but when I really needed them, I could see I wasn't as important to them. I needed God to show me that I was the one going wrong so that I could fix me. I now keep my boundaries safe and it is harder for me to make friends because I don't reach out as much (hard to get out when you're chronically ill anyway),but that's okay too. I always say I'm my own best friend and I enjoy my company very much. I'm delightful and I'm hilarious. LOL.
At 50, I still have a very small circle of friends,but I feel loved finally for who I am, because I am able to be completely myself with them, and no matter how warty and imperfect I am with them, there is nothing I can do that would make them stop loving me. One of them has been with me since childhood. They have been with me through the deaths of my precious family members,my illnesses,and now I'm going to walk with one as she just lost her mother this past weekend. But this is how God has redeemed those lost relationships in my life. He helped me realize who I am, who I was trying to be, and brought me new people who appreciated the love I freely give. I know what it feels like to be given up on, and I know what it feels like to be appreciated.
I'm a bit regretful that it took me all these years to figure things out, but I guess I've always been a late bloomer and people tell me I look young all the time, so why not "50" to start over, right? For now, I am planning to enjoy the fun my 50's will bring. Maybe weddings? Grandchildren? Trips? A move? Weight gain from menopause? A cure for IC? Another dog? A published book?? OOH!! The possibilities have me very excited to start this next decade. What I won't be doing is giving up on me, selling myself short, spending time being negative,or wasting time being anything less than what I was made to be!
Blessings to you and yours!
Thursday, July 18, 2019
A Day in the Life with an Elephant
I've heard and used the phrase often, "the elephant in the room". When there is a heavy topic no one is talking about, but it is there, weighing heavily, as present as the hand in front of your own face! No one wants to bring it up, but its presence can't be escaped from, and dodging an elephant in a small room is not only impossible, but probably smelly as well.
That's how I feel about my chronic conditions! Not only an elephant in the room, but a monkey on my back! Sometimes a bird in my hair and a whole zoo up in my business! It's unavoidable. A fairly private person, I don't like to draw attention to what is necessarily going on over here in Jamitown, it is a difficult task to try to live a "quiet, normal life" when carrying around the elephant of chronic illness right there on your back. Today I just want to share what it's like to feel the burden of that elephant. At least a smidgen of that elephant. Maybe just a tusk.
It's not like wearing a cast on your arm or leg or a bandage on your head, which garners attention, but then quickly fades. It's a constant presence in my life which dictates from every aspect-what I can eat, what I can drink, where I can go, how long I can sit, is it a long drive, how far are the bathrooms from my seat, are the seats comfortable, will there be items I can eat or do I need to sneak in my own food, will I dehydrate because I'm trying not to drink so I'm not in the bathroom every few minutes-disrupting everyone around me, will I have pain and have to leave suddenly,will there be flashing lights that could cause a seizure episode,how much walking is involved, are there close places to park,will I be able to take all my medications on time,and on and on.
It's beyond difficult to be "incognito" with an illness that robs you of your privacy and freedom. This creates a life where I often opt to stay home, avoiding many social situations where my illness may cause attention, or will make me more uncomfortable, and neither is worth it, to be honest. And in all of that is the whole "letting others down" element. Being a wife and a mom is at the top of my list, and they have had to rotate around me several times because I am not able to go, stay, participate, or conform. Letting people down is beyond awful for me.
I am a person who dislikes telling people I can't eat or drink this or that. I've always been very polite about being flexible when going to someone's home, but now my condition warrants very strict dietary needs. I no longer have the freedom to go to someone's home for dinner or even coffee and snacks unless they understand just how bland and boring my dietary restrictions are and don't mind meeting them. But see, I don't like having to make people bend these ridiculous but necessary standards, so I just don't offer or put myself in situations where socializing can happen. I'm tired of my condition ruling my life, but I don't have a choice. Going to receptions or other parties can be a nightmare, just like public restrooms, and I'll spare you those details. Let's just say I'm always happy to be home, where yoga pants and my own restroom awaits.
How all of these thoughts came together was the fact that I can no longer be as selfless as I want to be in my giving. I no longer have the freedom to drop everything and go help someone unload a truckload of something. My body cannot handle the strain of carrying weight, or putting pressure on my core area any longer. Standing for too long, raking, working outside in general, even my own housekeeping is a huge challenge. I work in 5 minute increments and I do many things from my stool. On a "good" day, I work longer on my feet, but pay for it the next.
The problem is, on the outside, I look completely fine. I look capable. Some even think I look "fit". To this, I laugh inside, as I am no longer able to complete my fitness goals. No biking, no walking longer than my driveway, no cardio, nothing that jostles the bladder. Stretching and arm weights. That's about it. It's not easy to complete a fitness goal with those restrictions. I had fitness goals, people! Just like some of you! It's not easy to clean a house. it's not easy to do a lot of things, but not being able to help others, and constantly having to talk about my condition, giving it all the attention has been the worst. You think you're tired of hearing about it? Guess who's tired of talking about it?
I don't want this to be my constant companion, but when my well-being depends on every aspect of my life being as healthy as possible, I have no choice. I have to be constantly aware of everything I'm doing, eating, and drinking, and every choice I'm making. These past few years of adapting to this new life and grieving my old carefree life has taught me that I took those years for granted. Think about what you are taking for granted today. The things you don't do that you can, and the things you're doing that you should not. And I don't say that to be preachy and all finger-pointy (yes, it's a word now), but maybe you're doing things that are adverse to your health and it will catch up at some point. Or maybe not, I've seen that too! I should have heeded the warning of the wise old woman who told me in the 80's to stay out of the tanning beds. I went in the 80's, and I regret every minute!
I don't know why this condition happened to me. I wish I could blame something, but I did not bring this on myself through any bad life habits or choices. This just happened one day out of the blue, the same way my seizure disorder started. And now I'm being told I may also have a third condition, but I'm not speaking it into existence at this time. People with IC (Interstitial Cystitis) often have more than one other auto-immune disorder and no one knows how to link them together.
My life is lived for survival at the moment, though I've struggled to not feel selfish, as I can't help people, like my own mother, who has been struggling for the last two years. She has had to hire a lot of help. All of those thoughts have done nothing but add to the stress, which exacerbates this condition! I want to shut myself off and forget I have this. I want to eat what I want like regular people. I want to be able to use my body the way God intended. And I'm really tired of Pelvic floor therapy. It's brutal. It's a trip to hell and back! It's invasive, it's intrusive, it's an invasion, and it's painful. And who doesn't hate that pain scale? You want a number this week? Okay. 7,6,3,8...it hurts every day! I'm used to pain now. It doesn't get a number! Sure, I joke throughout the procedure and my therapist is wonderful, but it's not funny. Not one minute of it is funny.
And all of it is invisible. Even on my face. My smiling face. My happy, funny Facebook posts. It's lonely. Because no one gets it. It's scary. It's never-ending. It's consuming. It's life-changing. And yet, it's bigger than the elephant in the room. It's meticulously hidden, and yet constantly forced out for all to see. Just ask me out for coffee. Or for a walk. Or to a movie. Or to help you rake. Or join a Zumba class. Or come for dinner. Have a conversation about chocolate even. Or any "normal" thing you'd ask a friend. And the answer will be....I'm sorry, no. I hate those reminders. Some days I wake up in a good mood, and then I remember this challenge, and I think, Oh crap, I forgot I have IC.
And yes, I appreciate my life, and I have joy. But I also need this. A letting go of how this affects my giving and my soul. It can become a penetrating idol, a soul-sucking mind trap. I can't describe it any better. If you've ever been in pain every single day for a year, you would know it is very hard to forget it for a day. It is very difficult to be joyful in those circumstances as we are told to be. And yet, as I share my experience, I also share this verse, because I know who walks this with me daily:
Be kind and gentle in other people's lives always. Don't think you know what a person is going through. And if you're curious, ask them! People with chronic and long-term illness are not complaining. Our lives have been forever altered. It's not a temporary thing! You have no idea what kind of elephants that person is carrying, even if it looks like their life is all rainbows and sunshine on the outside. (and I've been told mine does. Don't be fooled by Facebook, friends) And always be thankful if you don't have elephants or if yours are lighter right now. Life can change in just one day.
Blessings.
That's how I feel about my chronic conditions! Not only an elephant in the room, but a monkey on my back! Sometimes a bird in my hair and a whole zoo up in my business! It's unavoidable. A fairly private person, I don't like to draw attention to what is necessarily going on over here in Jamitown, it is a difficult task to try to live a "quiet, normal life" when carrying around the elephant of chronic illness right there on your back. Today I just want to share what it's like to feel the burden of that elephant. At least a smidgen of that elephant. Maybe just a tusk.
It's not like wearing a cast on your arm or leg or a bandage on your head, which garners attention, but then quickly fades. It's a constant presence in my life which dictates from every aspect-what I can eat, what I can drink, where I can go, how long I can sit, is it a long drive, how far are the bathrooms from my seat, are the seats comfortable, will there be items I can eat or do I need to sneak in my own food, will I dehydrate because I'm trying not to drink so I'm not in the bathroom every few minutes-disrupting everyone around me, will I have pain and have to leave suddenly,will there be flashing lights that could cause a seizure episode,how much walking is involved, are there close places to park,will I be able to take all my medications on time,and on and on.
It's beyond difficult to be "incognito" with an illness that robs you of your privacy and freedom. This creates a life where I often opt to stay home, avoiding many social situations where my illness may cause attention, or will make me more uncomfortable, and neither is worth it, to be honest. And in all of that is the whole "letting others down" element. Being a wife and a mom is at the top of my list, and they have had to rotate around me several times because I am not able to go, stay, participate, or conform. Letting people down is beyond awful for me.
I am a person who dislikes telling people I can't eat or drink this or that. I've always been very polite about being flexible when going to someone's home, but now my condition warrants very strict dietary needs. I no longer have the freedom to go to someone's home for dinner or even coffee and snacks unless they understand just how bland and boring my dietary restrictions are and don't mind meeting them. But see, I don't like having to make people bend these ridiculous but necessary standards, so I just don't offer or put myself in situations where socializing can happen. I'm tired of my condition ruling my life, but I don't have a choice. Going to receptions or other parties can be a nightmare, just like public restrooms, and I'll spare you those details. Let's just say I'm always happy to be home, where yoga pants and my own restroom awaits.
How all of these thoughts came together was the fact that I can no longer be as selfless as I want to be in my giving. I no longer have the freedom to drop everything and go help someone unload a truckload of something. My body cannot handle the strain of carrying weight, or putting pressure on my core area any longer. Standing for too long, raking, working outside in general, even my own housekeeping is a huge challenge. I work in 5 minute increments and I do many things from my stool. On a "good" day, I work longer on my feet, but pay for it the next.
The problem is, on the outside, I look completely fine. I look capable. Some even think I look "fit". To this, I laugh inside, as I am no longer able to complete my fitness goals. No biking, no walking longer than my driveway, no cardio, nothing that jostles the bladder. Stretching and arm weights. That's about it. It's not easy to complete a fitness goal with those restrictions. I had fitness goals, people! Just like some of you! It's not easy to clean a house. it's not easy to do a lot of things, but not being able to help others, and constantly having to talk about my condition, giving it all the attention has been the worst. You think you're tired of hearing about it? Guess who's tired of talking about it?
I don't want this to be my constant companion, but when my well-being depends on every aspect of my life being as healthy as possible, I have no choice. I have to be constantly aware of everything I'm doing, eating, and drinking, and every choice I'm making. These past few years of adapting to this new life and grieving my old carefree life has taught me that I took those years for granted. Think about what you are taking for granted today. The things you don't do that you can, and the things you're doing that you should not. And I don't say that to be preachy and all finger-pointy (yes, it's a word now), but maybe you're doing things that are adverse to your health and it will catch up at some point. Or maybe not, I've seen that too! I should have heeded the warning of the wise old woman who told me in the 80's to stay out of the tanning beds. I went in the 80's, and I regret every minute!
I don't know why this condition happened to me. I wish I could blame something, but I did not bring this on myself through any bad life habits or choices. This just happened one day out of the blue, the same way my seizure disorder started. And now I'm being told I may also have a third condition, but I'm not speaking it into existence at this time. People with IC (Interstitial Cystitis) often have more than one other auto-immune disorder and no one knows how to link them together.
My life is lived for survival at the moment, though I've struggled to not feel selfish, as I can't help people, like my own mother, who has been struggling for the last two years. She has had to hire a lot of help. All of those thoughts have done nothing but add to the stress, which exacerbates this condition! I want to shut myself off and forget I have this. I want to eat what I want like regular people. I want to be able to use my body the way God intended. And I'm really tired of Pelvic floor therapy. It's brutal. It's a trip to hell and back! It's invasive, it's intrusive, it's an invasion, and it's painful. And who doesn't hate that pain scale? You want a number this week? Okay. 7,6,3,8...it hurts every day! I'm used to pain now. It doesn't get a number! Sure, I joke throughout the procedure and my therapist is wonderful, but it's not funny. Not one minute of it is funny.
And all of it is invisible. Even on my face. My smiling face. My happy, funny Facebook posts. It's lonely. Because no one gets it. It's scary. It's never-ending. It's consuming. It's life-changing. And yet, it's bigger than the elephant in the room. It's meticulously hidden, and yet constantly forced out for all to see. Just ask me out for coffee. Or for a walk. Or to a movie. Or to help you rake. Or join a Zumba class. Or come for dinner. Have a conversation about chocolate even. Or any "normal" thing you'd ask a friend. And the answer will be....I'm sorry, no. I hate those reminders. Some days I wake up in a good mood, and then I remember this challenge, and I think, Oh crap, I forgot I have IC.
And yes, I appreciate my life, and I have joy. But I also need this. A letting go of how this affects my giving and my soul. It can become a penetrating idol, a soul-sucking mind trap. I can't describe it any better. If you've ever been in pain every single day for a year, you would know it is very hard to forget it for a day. It is very difficult to be joyful in those circumstances as we are told to be. And yet, as I share my experience, I also share this verse, because I know who walks this with me daily:
"Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time"
1 Peter 5:6
Be kind and gentle in other people's lives always. Don't think you know what a person is going through. And if you're curious, ask them! People with chronic and long-term illness are not complaining. Our lives have been forever altered. It's not a temporary thing! You have no idea what kind of elephants that person is carrying, even if it looks like their life is all rainbows and sunshine on the outside. (and I've been told mine does. Don't be fooled by Facebook, friends) And always be thankful if you don't have elephants or if yours are lighter right now. Life can change in just one day.
Blessings.