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.
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.
4 comments:
Love you Jami. Know that you are cared about and being prayed for.
Just what I needed today. Thank you for telling our truth. IC sucks!
It's so difficult having an invisible painful disease. Thank you for being honest about where you are today. I pray that God will bring you comfort emotionally and spiritually and a measure of healing physically.
You don't have to apologize to anyone miss Jami for how you feel and what you are suffering. Even faith healers die. If we were honest we would all say "Sometimes we win, and many times we don't." You are a mighty fighter and I bless you. I pray for healing and a time of relief from your pain in Jesus name! Love you sister.
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