When people have chronic illnesses, it is very hard for family and friends to understand or know what to do. When a Trigeminal pain episode hits, it is very hard for those around us to see us in pain or understand what we need. Many times the people we need the most turn away because our pain hurts them too and they want it gone as much as we do.
Today is our chance to tell our readers what we want and need during a pain episode. And how much it hurts that we cannot be the spouse, parent, employee, family member, or friend we want to be or were in the past.
Post your response as a comment.
Sometimes all I need is 'permission' to do or be whatever the pain or medication does to me. If I need the meds to knock me out, I need to know that's ok. If I need to rest my head and not get involved in daily life, then I want to know I'm allowed to do that. As there is no control over when we get flare ups, I often feel so guilty at the impact it has on everyone in my life. But if I sense understanding and compassion from that person or those people then I know it's ok to just be me - whoever or whatever that is!
ReplyDeleteI hope this makes sense, my meds are affecting the brain today and I seem to have a new side effect from this new med. Dry itchy eyes! At least it goes with the dry mouth, why not the eyes as well?!
Sorry...my answer was just ONE response to the topic...there are many more!!
I need your love and compassion while you may not be able to feel what I feel, I can also not help you understand it. You need to do the work, read about it, learn about it and accept it.
ReplyDeleteI need the space to mourn who I used to be and what life was like (whenever that hits me)...I need to know that what upsets me is not you or anything to do with you.
Learn to love me from afar when I am not in reach. I really am still here inside but taken over by unbelievable pain even though it's invisible to your eyes. Know that I am always fighting in here to be back with you.
I need you to know that I can never, ever plan anything again. It is nice to be invited places but everyone needs to know, I may not come - not by choice but by necessity. I need you to know how much it hurts me to miss all the fun and celebrations.
Lastly, I need you to know that the inside of my heart and soul I battle everyday to function. I am not the person who you all knew or who you feel in love with but I'm fighting to be.
I will always love you all as I always have. Please be strong enough and brave enough to do the same. <3
In the beginning, the support was great. I suffered for 6 months before I was diagnosed...a brutal 6 months. When my family truly understood the condition, they were wonderful...loving, helpful, and kind. It seems to have slowly slipped away. I know longer have someone rubbing my back in the middle of the night when I want to cry and sometimes do. I want that back. I shouldn't have to be the one who gets up in the middle of the night to let the dogs out when I'm in the middle of a hellish relapse. I shouldn't have to listen to an adult child tell me what I should do to "fix" it when I'm needing some compassion. I don't want to be left along and ignored or yelled at and told what to do. I don't want to hear that it must be like your migraine or maybe I should see my dentist or this or that. Please understand that no one knows and understands this beast better than I. Stop trying to "fix" me and just love me for what and who I am.
ReplyDeleteI know I'm rambling and probably not making much sense. The meds mess with my thought process, which frustrates the hell out of me. I'm sure people think I'm stupid or wonder what's happened to me, but it's just the meds...the damn meds.
When the good days come, I live them to the fullest and I'm so happy. But, when I relapse, the depression hits hard. I just want to be loved and taken care of. Don't get me wrong...I know I'm loved very very much, but sometimes it just doesn't feel like it. I know it's hard on my family to see me this way and my husband has even admitted to feeling sorry for himself because he has to do everything when I'm suffering so bad.
I am trying to speak up more and tell them what I need, so they can understand and try harder. I guess I just expect them to know.
A little compassion, patience and understanding would really be nice from my family members and close friends, what I have left of them. Please take the time to read up on Trigeminal Neuralgia...It is NOT gonna kill you or take too much time away from your busy schedules. The internet is such a wonderful tool! I learned so much about TN online. Maybe, you will see the words I first saw about TN....Worst Pain known to the Medical Society...The Monster...Suicide Disease...Really wonderful to have to gulp that one down...huh??? Maybe, you will begin to understand what a bastard TN really is...and why I hate this disease that robbed me of the life I once knew...
ReplyDeleteHave you noticed the big change in me? Oh, it is not a change you may see with your eyes because this disease you cannot see...I am NOT the same person I use to be. I really miss that person, but she is gone...I do try to resurrect her, but it is really hard when you are in pain all the time and have no energy to do the things that you always enjoyed doing......but I do try...I really do!
Please have some patience and a little compassion...I cannot do a lot of things and lately, i am starting to see it more and more...This is something that I, myself, has to come to terms with...I am NOT throwing in the towel '...
Have you noticed how long it takes me to do simple tasks? Yeah, takes me a long time to do most things that I use to do in half the time that I do it now...but I am still trying... The medication I am on makes me fatigued and I need to stop what I am doing and rest frequently...There are times I cannot think straight and I cannot get my words out...This is very embarrassing for me..
There is a reason why I do not make plans to do anything or attend functions...I cannot predict when an attack will come or even if I will be able to get out of bed that day...
Again, please understand that I have no control over this disease...the medication only does so much...
I have always tried to be strong. I have tried not to make a big deal out of this. But I need you to know that I am just as scared as you are. I don't know who I am anymore. When you choose to overlook my condition as if it doesn't exist or ignore the fact that I am struggling and need to talk about it, it really hurts when you won't. I understand it has to be very difficult. But, ignoring what is so obvious will not make it go away.
ReplyDeleteIt really upsets me when you say "You're not the same person I married". Well no, I'm not, and I hate it. But, I am still the person who loves you so very much!!! I hate that I am not as fun as I used to be, I hate that I have gained so much weight, I hate that I can't remember part of the conversation we had this morning, I hate that I fall asleep on you- sometimes in the middle of a conversation. But what you have to know without a shadow of a doubt is that I love you so much!!! I need you to still love me...please don't give up on me, I'm still here, I can hear you, I need you, more than ever now. Now is not the time to back out as if we never existed.
The medication I have to take is supposed to take the edge off the pain or take it away completely.. it works some days. But with that come the side effects. The main ones for me are memory loss, fogginess and sleepiness. I can't help that I fall asleep sitting up. I promise you I tried to get to that stack of laundry today, and the dishes, and the bedrooms. I didn't mean to wait until the day after the electric bill was due to pay it, or the water, and I can't find the cable bill because I forgot where I put it. I'm sorry I'm not as organized as I used to be. Please don't be mad at me.
I can't find my shoes when it's time to leave, I forgot where I put them, I could have sworn I put them by the door but they aren't there anymore. Did you move them? Please don't do that, it makes it harder for me. And where is my purse? Have you seen it? I need to take more medicine because my head is really hurting, it's a migraine coming on with a vengeance. I took my morning medicine already, or did I? Sometimes I need your help to remind me about my medicine. I have my big granny pill box, but if you could just help me remember when I have a migraine it would help me.
I have always tried to look nice for you. I hate that most of the time I barely put on makeup unless I plan on going out somewhere because I don't want to aggravate or start an attack.
I know you liked me having long hair and I have cut it shorter because I can't stand pulling it back into ponytails anymore because it hurts too much. Sometimes it hurts to simply touch my head. Saying my "hair" hurts would not be telling a lie.
I'm sorry that sometimes I don't go out with you as a family. I never make pinky-swears with the kids anymore because I don't want to break them. When you leave, sometimes I cry because it hurts so much to see you go and to know that I can't go too. I don't want it that way, but I can't go knowing that I would just ruin the fun for everyone else. I don't want everyone to worry about me. The sun hurts my eyes and causes an attack when I have a migraine, and the migraine causes the Trigeminal Neuralgia to go into full swing..it's one pitted against the other.
Please know that I am doing all that I can do to get help for this disease. I refuse to give up, stand down, or shut up. That's why I have attempted all the treatment options that have been made available including 2 MVDs. As long as I have breath in me, I will fight!! I will not accept this, I will not allow it to define who I am.
Sometimes I just need you to hold me and tell me it will all right,
and more than that, that WE will be all right!