Has anyone out there having/had problems with spouses understanding condition/med reaction/memory loss from med/mood swing from meds? This condition is playing havoc with my marriage.
Hi Baba - I think that we have all been there. Just hard for us to open up and admit it. I have been married to a police officer for 33 years. He like an awful lot of officers, sees the world in black and white I.E. he makes his decisions on fact, not feeling. It was very difficult for him to except the fact that I had a medical problem that could not be seen on an x-ray or CAT scan. In the beginning we had many arguments as he didn't understand my depression and mood swings. As for memory loss, wow!!! He is the smartest man I know, quick wit, fast to understand most any information but he could not understand why his wife had become a babbling idiot. I have had TN for 8 years my marriage has had some pretty tough times but TN almost finished us off.
I've gone from a very successful Department Manager to taking a job in the same field but entry level to try to adapt to the memory problems. I was terminated from that 3 weeks ago due to cognitive problems and time missed from work for medical. Luckily I am on LTD. I have had a 30K cut in pay in the last three years.
I have had an MVD, gamma knife and am back on the merry-go-round of meds again.
I am extremely blessed that my husband has been through this with me. He has morphed from a partially understanding man to a fully supportive partner in my journey. I think that the turning point for him was going to the neurosurgeon with me and hearing from him that he could see a loop in the nerve, the facts about TN. He had been to the neurologist with me prior to that, had read some articles that I printed for him, but I don't think that it ever sunk in like it did that day. The facts of the disease, the pain, the fact that I was going to have an open skull procedure with no guarantee of success because I was facing loosing my job due to cognitive problems. I had a supervisor who believed that I was using TN as an excuse, that the pain and cognitive issues were not real. My husband showed her a picture of the incision and staples.
I'm sorry for such a long story but I wanted to share with you that there is hope. 10 years ago I thought I was headed for divorce. Now I have a full partner in my journey. Many days I think that he cares more about me than I do. He makes sure that I well rested, fills in my words for me when I can't think of them, a most importantly has become a TN advocate. He educates all that we come in contact with about what TN is. I don't know what it is that makes our spouses either except or run from us but I'll keep you in my thoughts and prayers and hope that everything works out for you!
Thanks. I am happy you husband is so supportive. I am on the road to divorce. Actually he asked to live 'separate lives', but live under the same roof b/c either one of us finding other living accommodations is not financially feasible. To make things worse - we are business partners in a mid-size company. The straw that broke the camels back ---last weekend I had such a severe episode, I fell on the side walk hit my head and bit through my bottom lip. It's been some week to say the least --not such a good start to the holiday season.
Appreciate your support!
Oh Baba I'm so sorry! That just sucks - sorry no other words for it!!! We tried that too for a while, luckily we were able to work it out, first for the kids and then able to find our roots again. Hoping the best for you.
I am so very sorry that on top of this debilitating disease you also have a jerk for a husband! My husband can't tell you the name of what I'm going through..the medicine I'm taking..the doctors I've seen or am currently seeing or anything concerning me. We've been married 10 years with the last few being awful..we were actually separated when I first started & diagnosed with TN with only me coming back home a few weeks ago but not sure I'm staying! Had it not been for my family and my faith I don't know what I would have done...if it doesn't play into his facade of a happy family he wants no part. We deal with enough trying to survive through TN..being unhappy and with someone who can't learn enough about it to be supportive understanding and caring shouldn't be an option! I won't ever tell someone how to manage their relationship or marriage because mine is an absolute mess but what I will tell you is too do your best to be happy with you and then everything else falls into place..I know from experience! Don't settle for less and definitely don't take blame for something that's not your fault!! Praying for you and your healing in all areas of your life!
Hope..I am so very glad you and your husband found the way back to each other and that you now have the support you need!
Here are two great postings from here…
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
My brand new marriage, 2011, after 8 years of dating , 1 year of TN.
within my first year of marriage, i wanted to either throw away my meds or my husband…
He was black and white…about it being impossible that I lost my freakin IQ.
My memory , he couldn’t handle it… I was even on a low dose…
I finally told him that I would find another love someday, somebody who didn’t care if I had a worthless masters degree or not!!! Was READY FOR ANNULMENT!
I don’t know if it was that statement…
Or standing in front of my neurosurgeon the day before my surgery and realizing this reality.
I got remission,…
…then a very small stroke…in our third year of marriage!!
I am now talking 90% better. Memory, good, but stroke dulled it a teeny bit… And he’s accepting , but still gets impatient to himself I think.
I told him that MVD , NO guarantee , that no guarantee for anything, no black and white here.
If ever I get that bad in memory again… I will give him a choice, or maybe I won’t.
With the stroke it was more easy for him to understand, easier to be patient, BUT , even then… Not easy breezy for him…NOR ME,HELLLLOOOOO
MEN just have a harder time in this world when it’s not all fixed… They can handle things better when it’s fixed, fixable, being fixed…
That’s why women live longer, we get it
that life is 50 shades of…
Never mind. Things are not black and white LOLOL. HAVE to laugh or ya cry!
Sorry…meant to say, I don’t know which made him more accepting of my lack of IQ and memory at the time… My statement…about I would look for somebody to replace him
or getting my scary MVD…OR both.
My husband and I have good days and bad days. Just like my TN lol. I was a nurse and supposed to go to school to get my PA. I had to quit. I can't be a nurse while taking as many opiates as I do. I can't do much taking as many opiates as I have to... My husband is bitter about it. Now I can barely keep my dishes done. Before I was always on the go and cooked, cleaned, and worked 10 hr days. I think he will come to accept our new life, but it is a difficult road. I just have to have faith that he will come around and be patient with him. It is not easy for our family just like it is not easy for us. We are different people then we were... we are limited on where we can eat and when we can eat and what we have the energy for. Pain takes it out of me faster then running at top speed. Just keep your chin up and try to be patient. Keep praying. And keep loving.
Thank you for your help all. I have been out of touch for a while. Holidays were awful. Hubby actually left the house New Year’s Eve and told me ‘I am done with the marriage.’ And then price ended to say " I will be there through this ‘problem’ and surgery of yours’ but otherwise our marriage is over.’ Nice guy…right? I have cried for days. Episodes debilitating. See the surgeon on the 15th. Feel very alone.
The stress you are experiencing from your "marriage" could actually be adding to your pain! I found that if I got upset or stressed about something the pain would appear with a vengeance. I know it's easier said than done but sometimes you have to choose your battles and your marriage is not one you can fight at the same time as TN! I am/was fortunate enough to have a huge family so what i lacked in my marriage i made up for in their support! Still praying for you!!
Baba said:
Thank you for your help all. I have been out of touch for a while. Holidays were awful. Hubby actually left the house New Year's Eve and told me 'I am done with the marriage.' And then price ended to say " I will be there through this 'problem' and surgery of yours' but otherwise our marriage is over.' Nice guy...right? I have cried for days. Episodes debilitating. See the surgeon on the 15th. Feel very alone.
Do you have a friend …or family to hold your hand?
Who is your surgeon? Your odds of a more normal life IS in the hands of a TN surgeon who does at least MVD S per year…minimum…
I know your heart is breaking…please let us know what happens with your appointment!
You need to let him know all of the added stress makes this worse. You also deserve better. I’m so sorry you are dealing with this. People don’t understand because they can’t see it. If we looked like tn makes is feel then they would get it.
My heart breaks for you. May God bless you.
OMG Baba what a difficult time for you. No solutions only I need to say I am thinking of you and your situation. Seeing the surgeon on the 15th of Jan. Really trust you come out with hope. As has been said above, none of this is your fault or some divine punishment. It's just dumb bad luck. And sometimes the only thing we can do when we can't change the facts of our "new" life is to change our attitude to it. I takes time and much application, but at times I do see the Great Cosmic Joke that is being played out on us, and almost laugh.
Partners can & I guess will find it difficult.. as Stephanie says you look normal. They partnered with you as you were, and this is a significant and occasionally a disastrous change. "This is not the person I married". ( Forget the "in sickness and in health" bit). You've just got to deal with your TN, and do what you can for the relationship, but put YOU first. May be he'll return, maybe he won't. May be you'll find someone else, maybe not. But first of all regroup around YOURSELF and regain / rebuild that sense of independent self that we all had before at some other time in life. Remember when you were that self sufficient hot chick? May be you have to resurrect that person, or at least keep her in mind. She still loves you. I wish you all the best and know that you are not alone. Here endeth the lesson!! Hugs to you regardless of your state of pain!
I am so thankful for all of the support. It is unfortunate that my children now live in different states, quite far away. They are both extremely supportive over the phone but is difficult for me to burden them and disrupt their daily lives and their families. My parents --mid 80's---I haven't told them any of this and will not unless I decide on MVD. There health is not great any my mother, God bless her, will call me every hour on the hour to check on me now if I told her now she would have a nervous breakdown. (she also would say the rosary 20 out of 24 hours in the day). I have a two real friends that are trying desperately to understand - but again - they don't see anything.
And you are right Craig - I was (still am) at 'hot chick' :-) - and was very independent (was single 10 years between marriages) - just need to find her again.
Will update after surgeon
good luck Baba & Craig with your NS appointments…
( write down a list of questions to ask, for our forgetful minds, it helped me )
baba, those of us with TN are the Strongest of People, we have to be, to endure TN.
we ALL tend to forget that…
your strength of spirit will see you through, not just the TN but your personal struggles as well, trust that.
you are more than your TN, sending positive thoughts and ((( hugs ))) Mimi xx