What We Need is LOVE

As I sit here, contemplating after a restless night of sleep,my thoughts are drawn to what keeps me awake at night. It's hard not to think about pain in your body when it begs to be felt,and it becomes pain in your mind when it just won't cease,day after day. And in some cases, like mine, off and on for five years. I see it on social media nearly every day. Someone posting about a flu bug, a migraine , recovery from surgery,or some other mental pain or struggle. Why do we want our pain known? Why do we share pain with our 500 friends and strangers? Why in the midst of vomiting or the "worst migraine ever" would someone stop and  share that on social media?

Attention? Commiseration? Self-Centered and self-focused people? Sympathy? These are the reasons I often hear from others, but I happen to see it differently. Because I suffer from a painful and debilitating chronic illness, maybe my perspective isn't so jaded by that shallow kind of thinking.  Every sufferer of any painful thing, whether it is a simple cold or a tragic case of terminal cancer needs the same thing. Love. Every sufferer needs love. This is one of those late-night thoughts, accompanied by physical pain. Feeling pain physically weakens the body, but it also can cause the heart and mind to hurt as well. Sometimes we reach out to God in our pain, and sometimes we reach out to others.  When we reach out to others, particularly on social media, it may not look like a request for love, but that is the hope of what will be received, even if it's from a stranger. Someone who is hurting needs someone to care, and if they ask and no one answers, it adds to the emotional pain. And sometimes, as in my case, it exposes the fact that we were relying on people a little more than we realized for the relief of our pain.

Philip Yancey, author of Where is God When it Hurts, details this concept using 1 Corinthians, when he explains, "That is what a suffering person needs: love,and not knowledge and wisdom. As is often his pattern, God uses very ordinary people to bring about healing. We meet suffering people in every school, in every church, in every public building, as well as in every hospital. All of us will one day join them...every person will do battle in these frontiers-fear, helplessness, meaning, and hope. Our response to struggling depends largely on the outcome of our struggle in those frontiers." 

Those words- fear, helplessness, meaning, and hope really brought to mind the whole concept of any struggle, including my own with chronic illness.   I thought about what dispels fear for me-prayer, mostly, and what empowers my fear-negative thinking.  I thought about feeling helpless, which I often do, and what makes me feel empowered with strength-focusing on what I can do, versus making mental lists of what I cannot do. I thought not about the meaning behind this illness, because I will may never know that, but the many things it has taught me, and the people I will touch along the way. Some things it has shed light upon that I am glad to have learned, and others not as easy to learn-the fragilities of myself and the humanness of others. And then there is hope. That small word that carries the  big meaning of "expectation" that in itself carries its own power. Have I forgotten to have hope? Yes, we all have, and we all do, and this is why we must share and sometimes shoulder each other's burdens. Whether it's a cold from which you will recover or a chronic or terminal illness, the presence of love is hope to the mind, the body, and maybe even more importantly, the heart of any sufferer.

I have always struggled to share my health crises with anyone not close to me, but because of my writing, and prayer requests among friends, more and more people have come to learn about my condition. I chose to share my blog posts on social media in an effort to share my journey, and to hopefully gain insight from friends.  What I didn't realize was that I was also subconsciously seeking that same love/hope that I knew others were needing when doing the same.  I knew I would have some who would comment and offer to pray, and I could almost predict their names.  But in the back of my mind, I also knew there would be those who would read it and choose to ignore it. There are those who choose not to read it, and believe me, I know how many hours there are in a day and I understand.  People in pain, who choose to share their pain, don't just do it for sympathy and "likes", and even if they do, you can bet even that is a call for love. When I realized many people had read my post and only a few had chosen to acknowledge my pain, it hurt deeper than I was prepared to handle. Why would you ignore someone's pain on purpose? 

It all comes down to that word. LOVE. We share because we need someone to care. We are made by God to love and be loved.  We all want to feel like we matter!  People who are in pain can often feel alone- "No one knows how this feels." Loneliness can increase the feelings of fear-"Do people even care at all?"  Fear then feeds the feelings of hopelessness- "I am never going to get better", and down down down they go until they're all the way to the bottom. It's not just grasping at straws for help. Sometimes there's nothing anyone can do to help. It's grasping at people for love! It's a silent, but loud, "I'm feeling helpless! I'm feeling scared! I'm feeling alone and no one gets it. I need love! Someone please care!"

 Some people share because they want people to know they are in pain,and pain is something no one wants to face alone . On social media, you will often see people posting, "Share this so you'll know someone cares and is always listening" It's a suicide awareness posting. However, we need to be more than ears and words and social media postings.  I know I'm not the only one who feels these things as a chronically ill person. I want to do my best to actually reach out when someone is hurting, and I hope I recognize it when I see it. Chronically ill people, who often look very healthy, by the way, may not call you and tell you they are hanging by a thread. Suicidal people rarely reach out to others for help. Grieving people don't always call and tell you how lonely they feel.  We have to be better at recognizing when someone needs our love. It is our job to reach out and be the one who helps, prays, supports, and simply gives love.

There can be blessings in pain. Sharing those blessings is just as important as sharing the pain. People who give love to you want to know how it affected you or your situation. It is a return on the love that was given, and we need to remember the importance of that return. It's a way to glorify God and show how He is working through people.  I want people who prayed for me to know that my body or mind is better than it was two days ago,because I want them to see the power of God and love in action. I want them to know that they made a difference in me. Love often changes my perspective and my direction just from one thing a person says or does for me. We underestimate what we can do for others, thinking our small prayers or actions can't possibly help a person. Oh, but we can! Love.
 
This is not the life I always imagined, but it's what I've been given, and my job is to figure out how to live it the best way I can.  How to share my pain in a way to move others to love and how to reach out to God in the midst of my pain so that the lack of action in others doesn't become my loneliness.  How to trust God with the fears that threaten me so that I can fully trust Him for the healing in me, and while I wait, show love and compassion to those who are healing. This pain must have a purpose and my sharing of it must  continue to be my positive purpose as well. God has already placed people in my life who have helped me through this challenge. Because of that, I can keep trusting Him for those who will be here at the right time, and I can forgive and release those who are not meant for my personal journey.

 I know my love has a purpose, and I will continue to give that away freely. I believe God has a purpose for everything we go through.  Remembering that I must share all of my pain with Him, expecting His love in return, reminds me that I don't ever need to feel unloved, helpless, fearful, or hopeless as I face this and any challenge.

Pain:Unfiltered

So much for my writing plan...(insert big sigh here)With  the whirlwind of the holidays and having both daughters home from college for almost a whole month,my office hi-jacked by one of those daughters for a project,and various other distractions,my Tuesday writing plan got pushed aside. I was fortunate,though,to have been able to enjoy that month with my daughters,as my bladder condition seemed to ease up enough to allow me to go on a couple of outings,bake,do crafts with them,and enjoy some family time. I don't overlook that at all as I continue on with the rest of this post.

The first of the year began with physical therapy,as did the return of my symptoms exactly on January 1st. The girls were getting ready to go back to college,and my condition continued to worsen as that day arrived. I was in full "severe flare" mode by January 9th,and received an invasive therapy treatment again. No luck. By the following Monday,I was no longer sleeping,in severe pain,and had lost all ability to do anything but walk from the bed to the bathroom and back several times.

Today is Thursday,and I am still laid up on the couch with my heating pad and trusty dog,all my necessary items within reach,and no relief in sight. This is day 15 of another horrific flare. Did I mention there are no effective pain medications for this condition? That medical marijuana is often the drug of choice? That most people don't find relief in that or any other of the many medications or treatments for this God-forsaken condition? Yes, it sometimes feels that God has forsaken me. I'm sorry if that sounds selfish or unappreciative of the blessings I have. I'm sorry if you have it worse than I do and I don't sound grateful that I "just" have IC and seizures and not cancer or some other horrible thing. But this is my reality and I live it. I don't live any other life but mine. And I don't tell people with illnesses that they are lucky they "just" have anything, because I don't believe in dismissing anyone's situation or feelings. Today I need to feel. Just simply feel. And it helps when someone "gets" it, because it is quite lonely to go through something and not have anyone understand just how isolating and frightening and truly sad it is to have your life turned upside down by an illness that sucks your dreams away and takes your future with it.

Today I'm not going to pretend I am strong to make everyone feel better. Because the next time you meet someone who is battling a chronic,but invisible illness,you need to understand that the smile on that face is hiding a HUGE battle that they are fighting ALONE. Every day. And it's not going anywhere. No one is fighting for a cure. No one is bringing casseroles! Because it's every day. And it's up and down and it twists and turns, and you might get them on a good day and they look like they have the world on a string. But it's the days in between that you don't see. The days they are fighting just to convince themselves there is something or someone in this world worth staying for. Yes, it can get that bad and that low,and people of faith deal with this too. Don't ever assume believing in God protects you against entertaining these types of thoughts. There is an enemy who likes to keep this battle going and the sicker we are, the better.

Where is my mind today? It's certainly not on hope. It's not on purpose. It's not on my faith. And because of this overwhelming pain and despair,I have asked many prayer warriors to pray on my behalf. This is the side of chronic illness that people don't see,but maybe it needs to be seen. So many of us are told to "be positive","get out and do fun things",etc.. But if they lived one day in our shoes,maybe they would be a little more sensitive to the real encouragement we need, which is,"how can I help?" "what kind of day are you having?" "how can I pray for you today?" Because quite honestly,"getting out and having fun" are things we miss and shed tears over. Those are things we want to do but our bodies don't allow it.  We need understanding and not feel shamed over feeling how we feel about having our lives hi-jacked by illness. Some people need to walk a mile or so in another person's shoes and learn about empathy.

Today I am as raw as the inside of my bladder. Today I just need to feel what I feel. Unfiltered,unedited and unworried about what others may think.

So Glad it's Friday....

It is not Tuesday,my regular posting day,but I am back. I'm so glad it's Friday! Don't cheer just yet,I might complain just a little. This past week our area was hit with a nasty ice and snow storm,which made a mess of the roads and trees,knocking out power to over 11,000 people in my county alone. The storm came early Sunday morning, and the girls had plans to return to school later that afternoon. We awoke to no power,and with worries of our girls driving back in the mess. Needless to say,anxiety was for breakfast and worry was for lunch. I would love to say I was a cool,unharried mother,but when it comes to storms and kids,I revert back to my preschool days of fevers and all things scary.
I tried to no avail to convince them to stay until Monday,but with finals and work schedules,it was just not possible. With lots of prayers,we sent them on their way,and yes,they made it safely back,taking a safer but longer route to school. I breathed a sigh of relief,and then set to work on the inconvenience of a certain days-long power outage. Because of the low population of our area,we know we aren't a priority when it comes to being top of the list of having our power restored,so Steve drove into town on the unplowed (also last on the county list) road to fill up the gas tanks for the generator,and we settled in.

The power outage was inconvenient,yes. No one likes having to worry about the sump pump in the basement,the food in the refrigerator and freezers,but we weren't worried about much else as far as the house was concerned. What was more concerning was that I had just discovered on Friday that I had run out of one of my medications. This never happens,as all of my medications automatically renew,and if they start to run low,they call my physician. If a problem occurs,they call me,and I have plenty of time to fix the issue. None of that happened,and so I was stuck without one of my crucial medications for my IC condition. I have also been in a horrible flare for the last two weeks. This was not the time to lose power or my medication or to encounter stress! But all of those things happened at once.

When I finally was able to contact my physician,they said they didn't renew my medication because they hadn't seen me for a year. (I was in their office on 2-14-2019 for a 2 hour procedure,which she noted in the correspondence) However,no one notified me. I did not expect this from a top medical facility who supposedly understood how awful this condition is and medication maintenance is crucial. When I tried to make a follow up appointment with them they told me to wait back in July. So....anyway,lately I've just been feeling like no one is really helping and a whole lot of things are really hurting. Ever feel that way? Like a big ole lumpfest of yuck?

I equate this to how it feels when you finally lose hope. People love to tell others, "Stay positive!" or "chin up!" I really want to ask some of those people if they really understand who they are saying that to at all. There is a big difference between a positive attitude and hope. I kept a positive attitude about the power outage day one, day two,and then it started to turn into day three,and the only reason it started to really get under my skin is it was starting to cost a lot of money to keep the generator going. My husband was stressing about work issues,the power outage issues,my health,and it just seemed the list kept going. The generator kept quitting in the night and he was worried about my pain level and keeping me comfortable. By the second night, I missed an entire night of sleep and for some reason,Angel wanted outside at 3 and 4 in the morning. She was a restless dog the entire time the power was out,poor girl. Because of my loss of sleep and lack of hot water the next day,I had to cancel a very important physical therapy appointment that morning. Sigh. When it rains,sometimes it just pours. And freezes if you're in Michigan in December. And sometimes you just lose your "positive attitude" because you can only hold on to measly "positive" for so long!

This is when hope comes in. Hope isn't about getting your power restored,though it is about getting your lights turned back on,in a way.  Hope says, yeah,you're right. It's bad,but God will take you through this. His power will restore you. That's why I choose hope over any smarmy positive quote or cheesy affirmation I ever see anywhere. Hope says,this looks like a long,tough wait,but God is going to wait with you. You won't go through this alone. Hope is dependable. A positive attitude is not a bad thing,but it's what I need before I plug a string of Christmas lights in. Not the only thing I need when I'm going through something really tough! God is where my hope is found.

So,I had a pretty rough week,and I know it could have been worse,and I'm thankful it wasn't worse. In the grand scheme of things,it was just a loss of money,time,and probably some new gray hairs. We all have bad moments,days,weeks,and even years. Someone may have it worse than us,it's true. But I'm here to reassure you that I won't dismiss the way YOU feel about YOUR pain and how you are dealing with it by telling you that. What I will say is that yes, it's bad, and I'm sorry. Just don't lose HOPE. Because God is in this with you. He will never leave you or forsake you, no matter how bad it looks,feels,or seems. He is your hope. Hold on.

Humble yourselves,therefore,under God's mighty hand,that He may lift you up in due time. Cast all your anxiety on Him because He cares for you.  1 Peter 5:6,7

I am both positive and hopeful that my writing will return to normal next Tuesday. Prayers for healing would be most appreciated as I try to manage this latest flare. Blessings to you!