People ask me how I’m feeling, or doing. But how do I answer that? Like how do I REALLY answer that?
I can’t say, “Good,” because I’m not good. And I’m not going to be good until after I have another brain surgery at the end of November and then recover from that surgery.
But if I tell you I’m not good, I’m in pain. I’m really hurting today and I’m frustrated, sad, depressed, aggravated and scared. Scared about when my next excruciating electric jolt of shocking pain is going to shoot through my face and bring me to my knees. And praying it doesn’t happen here in front of people.
Then I either feel like I’m disappointing you, you don’t believe me, you think I’m exaggerating, and that you’re thinking to yourself that it really can’t be that bad.
For those of you that do know me, really know me, I also can see the sadness and helplessness that is in your eyes and heart because you love me and you feel lost too.
At my house, when my youngest asks me how today is for me, which she does daily – bless her heart, we have an understanding; and I give her one of these three answers: good, manageable, or bad. Now, she knows that I’m always in pain 24/7.
So that makes my ‘good‘ mean I can function pretty well for myself today and have had minimal shocks on top of the constant pain.
‘Manageable‘ means normal pain with boughs of stronger than normal burning, bone breaking, teeth hurting, migraine behind my eye pain with a fair amount of shocks, I can eat soft foods that require minimal chewing, there’s probably also times of tears on and off and I can do short spurts of talking.
Then there’s my ‘bad‘ which is everything I mentioned before but with some drop me to my knees shocks, want to pull my jaw off my face bone breaking feelings. If I walk I can feel the vibration of my walking up through my body into my teeth and facial bones and I can only walk on my tip toes that day. It also includes no swallowing of anything let alone my spit, because that hurts too bad, can’t shut my mouth, touch my tongue to my teeth, the inside of my cheeks or mouth to my teeth. If I do, I can actually feel them touching my teeth. My nerves are so over sensitive. That also means forget eating or talking.
My daughter also knows that this is a progressive disease, and I tend to progress quite rapidly. As time goes by between now until my surgery, I will end up with way more ‘bad’ days.
But, how do I answer you?
I want to bring awareness to my hidden illness, my invisible disease, because the more we get it out there, the more attention it gets, and that means more awareness which could mean more funds which could actually lead to a cure!
At the same time, I don’t want to feel like TN is all I am or all you see when you look at me. Or have you get sick of seeing my posts or blogs and just skip over it. Or think I’m saying, ‘look at me, oh poor me’.
But, I don’t want to lie to you.
And unfortunately that is true.
I also can’t let it kill my Spirit. I do not believe God gave this to me, but I do believe He is allowing me to go through it for a bigger reason.
I have to believe there is a reason for this. I do believe there is a reason, bigger than me. I have to believe that I am going through this, that my husband and my kids and my friends are going through this, for a bigger purpose.
For me I believe that it’s so I can help someone else, someone who also has Trigeminal Neuralgia, or another chronic pain condition, so they don’t have to go through everything I have had to. So they don’t feel isolated or alone. So that I can suggest Dr’s that are caring and listen and don’t treat you like you’re crazy. Like you’re making it up, like you’re a drug seeking addict. Because I’ve been treated like that, and I know how it makes you feel. I’ve also been treated wonderfully and been blessed with amazing doctors and surgeons along the way too. And I’d really like to hope and pray that I can in some small way, by sharing my story, encourage someone else.
I havent been able to pinpoint why my amazing husband has been put through this yet.
I believe for my kids and maybe my friends too, it may be so they are aware that there are many people who you run into daily that may look just fine on the outside but are hurting immensely on the inside. Either from a medical condition, a personality disorder, a mental disorder, secret fears, debilitating anxieties, learning disabilities, social conditions, what ever it is. You just never know what the person sitting next to you is going through or struggling with.
Be kind to everyone, say hi to people walking by, look into their eyes when you talk to them, don’t ask someone how they are and keep on walking. Mean it when you ask it, and then take the time to hear their answer.
Fight for what you believe in, stand up for a cause that means something to you.
Make a difference in someone’s life, in a groups cause, in the world. It doesn’t matter which one, we’re all called to different things at different times in our lives.
Don’t think or believe that what you do doesn’t matter.
You never know when you’ll say or do something that will encourage someone else, or even inspire them to do something.
It’s ok if your roll is not a big, out front, a famous thing.
You just do what you were meant to do!
If you want my truth when you ask me, ‘how are you doing?’, I will give it to you, just add, ‘really’ to the end of that sentence. I will tell you.
These thoughts and truths, I have to believe apply to most invisible illnesses, diseases, disorders, and/or disabilities that many people suffer with:
These next ones really hit home for me.
Something that I’ve really done in the past is isolate myself.
It has led me no where good.
It is one of the main things that I am working on this time, and I have to say that I am kinda proud of myself for actively working on not doing it.
I have people over on Tuesdays for a Bible study and fellowship.
I have also been getting out of my house as much as I can, even with the limitations I have.
Friends come see me, or come pick me up to go hang out for as long as I can.
I’ve been able to go to a Lions football game and a Tigers baseball game.
I’ve been out to eat with my husband, and gotten a message.
I’ve been able to make it to one high school football game so far this year.
I’ve been able to do a few projects – which make me feel super productive.
I’ve been to a few dr appointments and also regular counseling appointments.
I was able to go and bowl with my husband and friends on our once a month bowling league.
In the honesty of full disclosure, there are also many things we’ve had planned to do that I couldn’t make due to my pain level that particular day at a particular time too. My point is, there are going to be those times and days, there just are. It’s the nature of the disease. Just do what you can, and go when you can. And when you can’t, there’s always a next time. Take care of yourself, and stay back when you can’t go. It’s ok.
Previously, when I’ve suffered with TN, I have slipped into deep, deep depressive states.
I have also had struggles with social anxiety. It has been so bad at times that I would lay in my bed, through massive anxiety attacks and tears, having to talk myself into leaving my room, just to go out into my own living room.
That was so unfair to my poor children and to my husband. And to myself too.
It was only because my love for my children and the need for me to be there for them was stronger than my desperate feelings of needing to be hidden from the world, that I finally, after many self talks, called and made an appointment with a counselor and a psychiatrist for help.
Only after finding the right medication and many, many tough counseling sessions and a lot of hard work, could I gradually stop isolating myself and start joining the world again.
For those of you who don’t know me personally, I am a very social person, being around people is really what makes me happy. I was in the fashion industry, I was a cosmetologist, I was a missionary, I went on the field trips with my kids, I was at all of their concerts, sporting and school events. I had parties at my home; for us, for the kids, for youth groups, birthdays, holidays, you name it! So self isolating, was NOT in my wheelhouse.
Until it was.
Now my TN is back with a vengeance. I’m struggeling with fatigue, extreme pain and the fact that I can’t drive myself again. Then I’m also feeling embarrassed because of my bloated appearance due to pain meds and recent anesthesia from a failed procedure for pain control. Add the fact that I’m pretty sedentary again, due to my limitations of extreme fatigue and constant pain, and here comes the weight gain again.
With all of these limitations put on me now – again, it is very, very easy for me to retreat back into my room and not want to come back out.
However, (and here comes the good part), because of my past experience with this and the fact that I am still on my anti-depressant medication, and have still been going to my counselor about once a month, (for maintenance), I was already set up in a better position for success this time!
I just had to make a decision and then stick with it. And yes, sometimes I have to force myself to go. Go to counseling, go to the party if only for an hour, even go to the couch in the living room instead of stay in my room. It does help, in a strange way, that I can not drive myself right now. I have to arrange rides for my appointments now, so that can be used by me as an accountability tool. I can’t just call and cancel my counseling appointment because I can’t make myself go that day. If I did, I’d also have to call my friend, and cancel my ride too.
It’s just an extra layer of keeping me accountable.
And believe me, some days, I really need that!
Hey, whatever it takes! Right?
I will slip at times though, and when I do, please:
Because my Trigeminal Neuralgia is a progressive disease and because it becomes more and more painful the longer I have it,But, I WILL get through it! Day by day, hour by hour, minute by minute, and yes some days even second by second.
I leave you with this my friends:
4 thoughts on “How Do I Answer You Honestly; And Keep My Head Above Water?”
I love your outlook on life and your disease. You have no idea how much this means to me. I cried like a baby through the whole thing. I can relate to almost everything you have written! I love you Sara!! Know you can always count on me.
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I’m so very touched that you could share this with me. Thank you so much for being one of my chronic pain warrior friends! We’re not alone! Love you!
This is a great blog . You’ve brought up so many great points . Things people don’t see or understand with an invisible( to others ) illness . Your pain is very real. Love you girl. Keep up the good work. I’m always her when you need me.
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Sara – I can’t imagine what you are going through. After reading this I realized that asking you how you are is a really stupid question. I can already answer that question when I walk in the door and see your face. I know that you are frustrated and I pray that God will take that away. I pray that God will heal you and that you will be pain free. I am excited that you got your surgery moved up and I will be praying the entire day for you and Tim. You are not alone in this journey. There are people who care and love you, and they hurt and cry with you. You are loved and you can come and call on me anytime.
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