More recently than before (or maybe I am just now noticing) alot of folks - friends, family and collegues - have been talking about this "old me" and how amazing this "old me" was and the things that the "old me" could do. The "new me" is different and how things will be so much more challenging.
Do you hear this stuff too?
How do you handle it?
It is royally crushing and has me all distraught + angry (never a good combination).
Sadly, I've heard it too. Yes, it makes me nuts. Handle it? The same way I handle the rest of the "joys" I'm discovering through ATN. Cry, get mad, read a book to distract myself, & hope that I grow a thicker skin. My close friends & family have been better about not being judgmental, so I know I'm super lucky in that respect, others I just chalk up to ignorance. Rather like the person who asks the infertile couple when they're planning to have a baby.
I hope you can get to a point where those comments don't hurt as much. I know they do.
YES! My husband and four children all talk about me like I'm just useless nowadays. Remember when mom did this... or mom did that....
I try and think, well at least they have some good memories of me. However, it makes wonderful fuel for me when I want to be depressed. Also, I know I am hesitate to do some things just because I fear getting too tired and causing a break out or migraine. So that makes me feel guilty because I could have tried doing or going but didn't because of the fear.
I get the same thing from my other half and quite honestly it makes me very depressed to hear. I am tired all the time and never feel good. I work a full-time job to support my home and mentally challenged daughter. I try my best but I have realized that I have changed. This pain has changed me, I cannot cry about the pain and what has happened as I must stay strong. This is God's plan, I may not understand it but someday I will when He thinks I am ready. This is how I look at it....there is a reason for everything.
I am new to this, just diagnosed this week, but this is what I think. We all change whether from chronic pain or aging, a car accident or a life-changing decision or maybe just maturing. We can look at people and say,"You have changed a lot too." So there.
I have had major depression for many years and it was life changing. But it's mostly me that is in mourning for the old me. Being diagnosed with TN was just a shift, not a major change, a least not yet. I miss the old me that could do things, be around people, have fun. So far I am adapting to TN but then I have had only two major attacks and the stoooopid pills are working. I'm just more stupider. (Yes that was on purpose). But you do go into mourning and so does your family and friends. If you're lucky they will adjust to the new you and you know who your friends are. It also makes you more compassionate for other people going through pain, or divorce, or illness etc. You will get through it but it takes time. My second husband couldn't handle my illness (depression) and we divorced. But I've been with my third husband for 13 years and he's a pro. Yes he misses the old me but only says so when I ask. But he also echos what was said before by coartchick. That things changing is just part of life. Yes, he gets frustrated because he ends up doing more of the housework etc. But he also has things he does just for him. Because you have changed because of this illness means all your relationships have to change also. It's the dynamic of the situation. You have to think if THEY had this disease what would you do? Your relationship would change with them.
Good topic...and timely. My wife and I were just talking about the "old me" and the "new me"today. After 4 months of this pain and the wonderful side effects of 3 different drugs to-date, there is a new me that smiles much less, that is quieter and less social and doesn't have the energy. I am determned to understand this condition better, push my neurologist for better drug combinations, probably go to the Mayo Clinic for an additional evaluation, etc. After all, just 4+ months ago I was a smiling, happy, energetic 57 year old who was traveling around the upper midwest and southwest on weekends playing in competitive softball tournaments. Mentally I could keep up with most anyone as a computer consultant. With the drug side effects I have memory issues, coordination issues, slow mental processes and softball has been put on temporary hold (I hope only temporary since it is a passion). The old me may never return...but not without a lot of fighting on my part. By the way, I've been playing phone-tag with my neurologist for two days since I've had a couple of unusually bad days. Even though much of the information on TN says that it usually isn't triggered while sleeping, I was startled awake at 4:15am this morning with a very painful shock to the forehead immediately followed by 2 more once I realized I was awake, followed by many more througout the day. I estimate about 700+ painful shocking stabs in the usual 2 spots in my left forehead. Not a fun day. That is currently part of the new me. Fortunately I am blessed with a wonderful wife of 34 years who was very understandable today when I found it hard to smile. She heard my usually "UHM" noises during the painful ones that buckle my knees...about 100 times. The other 600 were only noticable by me as I try to hide the pain from others. Good luck to all on successfully holding on to the old you. I'm determined but understand that this is a journey that can be long.
I actually recently started doing grief work in real life - so I bumped an older posting back up to the top of the threads on something important to remember for our family and ourselves - grieving for what we have lost........maybe reading that will help you
I am now 100% free of TN pain. BUT I wear a secret invisible tatooo in my minds eye - that this can come back to bite me in the but before my second 50 years is done here on earth LOL
I will never be the old me - even without TN pain -- I have a tad bit of PTSD after only suffering months of it before MVD. Crazy-azz meds, no job, lots of depression, low self esteem.......all that is a very fresh memory still and I hope it just makes me a better person
I have had hundreds of other types of losses in my life, and will continue as time marches on, you lose friends, pets, neighbors, kids grow up, other health problems now move up the scale of importance that have been neglected -- not earth shattering - but loss of self is where I was my lowest -- not old or new self -- JUST SELF
I had no purpose - teen didnt need me - was not much use to wonderful newlywed hubby, no use to my profession, so I spent my time here mis-spelling on my drugs and trying to connect with others and learn all I could and support all I could - that was my daily existence besides my 5 pets at home therapy!
Now back to work and travel and killing off normal health issues like high BP and minor thyroid, and Menopause and sleep disorder and........ all took backseat to TN of course!
My hubby would often verbalize wanting the old kimberly back that was part of who I was in our 8 years of dating - I wasn't even my self on our wedding -- it has been a longggggggg road--- I've only been back to a new normal of myself for a few weeks and am so lucky that my TN struggle to date only lasted 18 months off and on.
I think we are all reinventing ourselves
and also read the featured posting on
The Spoon way up top of first message
page
Keep Posting!
Remember Anger Is Just Mis-Placed Fear!!!
Brad,
Thank you for sharing your story with us. TN is definitely life altering and it's hard to be the "old us" when you're being racked with such pain. That's wonderful that you have a loving, supportive wife. I feel fortunate to have a very supportive husband, too.
Your fighting spirit is an inspiration. Hope this is a good day for you. :)
~ Vicki
Brad said:
Good topic...and timely. My wife and I were just talking about the "old me" and the "new me"today. After 4 months of this pain and the wonderful side effects of 3 different drugs to-date, there is a new me that smiles much less, that is quieter and less social and doesn't have the energy. I am determned to understand this condition better, push my neurologist for better drug combinations, probably go to the Mayo Clinic for an additional evaluation, etc. After all, just 4+ months ago I was a smiling, happy, energetic 57 year old who was traveling around the upper midwest and southwest on weekends playing in competitive softball tournaments. Mentally I could keep up with most anyone as a computer consultant. With the drug side effects I have memory issues, coordination issues, slow mental processes and softball has been put on temporary hold (I hope only temporary since it is a passion). The old me may never return...but not without a lot of fighting on my part. By the way, I've been playing phone-tag with my neurologist for two days since I've had a couple of unusually bad days. Even though much of the information on TN says that it usually isn't triggered while sleeping, I was startled awake at 4:15am this morning with a very painful shock to the forehead immediately followed by 2 more once I realized I was awake, followed by many more througout the day. I estimate about 700+ painful shocking stabs in the usual 2 spots in my left forehead. Not a fun day. That is currently part of the new me. Fortunately I am blessed with a wonderful wife of 34 years who was very understandable today when I found it hard to smile. She heard my usually "UHM" noises during the painful ones that buckle my knees...about 100 times. The other 600 were only noticable by me as I try to hide the pain from others. Good luck to all on successfully holding on to the old you. I'm determined but understand that this is a journey that can be long.
Hello. Thanks for sharing your story and information. I really miss the old me and that makes the current me seem like a complete sranger inhabiting my body and mind. I hope to land somewhere in the middle of the old me and the current me as I hopefully have success getting this under better control. I am glad I live in Minnesota and can make a round trip from my home to the Mayo Clinic in about 3 hours. I am hoping that will be in my plans shortly and will be glad to share what I learn from them. They are certainly known worldwide for their quality of diagnosis, care and teamwork. BTW, the new me had 7 forehead stabbing pains, 2 "knee benders" during the typing of this single reply. But I'm heading off to the Mall of America with my sweatheart and enjoying my day the best that I can! Take care.
Kc Dancer Kc said:
I actually recently started doing grief work in real life - so I bumped an older posting back up to the top of the threads on something important to remember for our family and ourselves - grieving for what we have lost........maybe reading that will help you
I am now 100% free of TN pain. BUT I wear a secret invisible tatooo in my minds eye - that this can come back to bite me in the but before my second 50 years is done here on earth LOL
I will never be the old me - even without TN pain -- I have a tad bit of PTSD after only suffering months of it before MVD. Crazy-azz meds, no job, lots of depression, low self esteem.......all that is a very fresh memory still and I hope it just makes me a better person
I have had hundreds of other types of losses in my life, and will continue as time marches on, you lose friends, pets, neighbors, kids grow up, other health problems now move up the scale of importance that have been neglected -- not earth shattering - but loss of self is where I was my lowest -- not old or new self -- JUST SELF
I had no purpose - teen didnt need me - was not much use to wonderful newlywed hubby, no use to my profession, so I spent my time here mis-spelling on my drugs and trying to connect with others and learn all I could and support all I could - that was my daily existence besides my 5 pets at home therapy!
Now back to work and travel and killing off normal health issues like high BP and minor thyroid, and Menopause and sleep disorder and........ all took backseat to TN of course!
My hubby would often verbalize wanting the old kimberly back that was part of who I was in our 8 years of dating - I wasn't even my self on our wedding -- it has been a longggggggg road--- I've only been back to a new normal of myself for a few weeks and am so lucky that my TN struggle to date only lasted 18 months off and on.
I think we are all reinventing ourselves
and also read the featured posting on
The Spoon way up top of first message
page
Keep Posting!
Remember Anger Is Just Mis-Placed Fear!!!
BTW, I love the number of people who point out that there spelling and grammar is now bad due to the side effects of these drugs. I think I just called my sweetheart my sweatheart in my last reply. Funny stuff!
Kc Dancer Kc said:
I actually recently started doing grief work in real life - so I bumped an older posting back up to the top of the threads on something important to remember for our family and ourselves - grieving for what we have lost........maybe reading that will help you
I am now 100% free of TN pain. BUT I wear a secret invisible tatooo in my minds eye - that this can come back to bite me in the but before my second 50 years is done here on earth LOL
I will never be the old me - even without TN pain -- I have a tad bit of PTSD after only suffering months of it before MVD. Crazy-azz meds, no job, lots of depression, low self esteem.......all that is a very fresh memory still and I hope it just makes me a better person
I have had hundreds of other types of losses in my life, and will continue as time marches on, you lose friends, pets, neighbors, kids grow up, other health problems now move up the scale of importance that have been neglected -- not earth shattering - but loss of self is where I was my lowest -- not old or new self -- JUST SELF
I had no purpose - teen didnt need me - was not much use to wonderful newlywed hubby, no use to my profession, so I spent my time here mis-spelling on my drugs and trying to connect with others and learn all I could and support all I could - that was my daily existence besides my 5 pets at home therapy!
Now back to work and travel and killing off normal health issues like high BP and minor thyroid, and Menopause and sleep disorder and........ all took backseat to TN of course!
My hubby would often verbalize wanting the old kimberly back that was part of who I was in our 8 years of dating - I wasn't even my self on our wedding -- it has been a longggggggg road--- I've only been back to a new normal of myself for a few weeks and am so lucky that my TN struggle to date only lasted 18 months off and on.
I think we are all reinventing ourselves
and also read the featured posting on
The Spoon way up top of first message
page
Keep Posting!
Remember Anger Is Just Mis-Placed Fear!!!
Yeah, I keep messing up and am not sure I can actually put a thought down so others can understand it. I keep spelling too two. I'm glad it's not just me. I think there should be a disclaimer on this site. DO NOT PAY ATTENTION TO GRAMMAR OR SPELLING AS MANY MEMBERS ARE TAKING MEDICATIONS THAT INHIBIT THE USE OF EITHER ONE.
I got the I miss the old you. You never laugh or smile anymore.
I actually had someone tell me that I just need to decide that I am going to be happy and I will be.
It is all in your head and if you decide to do it, you can do anything.
I want to be me again. I can't smile and laugh anymore because it causes so much pain. I am so tired of this controlling me rather than me controlling this. I am frustrated, tired, sad and try to hide everything from everyone else as much as possible because they just don't understand.
I am grieving for my old self and life. I am trying to find my way through this new world I deal with every day. <<Sigh>>
I don't really get the "I miss the old you" so much but I do deal with misunderstanding. My family doesn't know much about the condition and they think that now I'm on pills everything's sorted, right? When I tell them that I'm still in pain, it makes them sad, I don't want to make them sad, at the same time it's very hard to participate in activities I enjoyed in the past and pretend i'm ok. I find that some innocent statements make me want to cry, like my Mum saying that her colleague went to the Pearl Jam gig the other day and how great it was. I wanted to be there at the gig, it was something I was looking forward to for months but couldn't go because of pain. I can't share in the excitiment of my colleagues who are going on a holiday because I'm scared of making long journeys and generally being away from home in case a get a bad attack. People can see that. They tell me I look very sad...the strange thing is that the shape of my eyes has changed too...they have a constant sad look about them now.
I think you should punch that person in the face then tell them that they just need to decide that they are not in pain and they will be.
You WILL get through this mourning period. It may not be a comfort but if it wasn't this it would probably be something else (arthritis, decline with age) that would change the old you. But this pain is different as it is SO BAD.
It sounds like you are going through depression that is so common with those having TN. First, see if something, changing meds, lidocaine patches etc can get the pain to a tolerable level. If you go to the ER don't tell them it's depression or they'll just give you psych consult and won't help the pain. If it's an insurance issue then go to the ER if you have to. If you have a teaching hospital where you live, they would be a good first choice. You need to be at a tolerable level for pain.
I'm am so tired myself. I've had major depression for many years and am so tired fighting this beast. But I have to keep going for my husband. Now even if they don't understand there are people who care about you. Print this out and give it to them
http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for
it's very descriptive of what is happening to you.
Everybody's depression is similar but what helps you is different. If listening to soft music helps, then do that, if it's meditating do that, if it's sleeping etc. But first the pain has to be controlled because that is all you will be thinking of, understandably. Also some antidepressants can be taken in conjunction with TN meds. You are not alone in this. It may be time not to hide this anymore. I don't really know how you can. You might find the people you think would be the first to run are the most understanding.
Tina
Dana Nelson McCullah said:
I got the I miss the old you. You never laugh or smile anymore.
I actually had someone tell me that I just need to decide that I am going to be happy and I will be.
It is all in your head and if you decide to do it, you can do anything.
I want to be me again. I can't smile and laugh anymore because it causes so much pain. I am so tired of this controlling me rather than me controlling this. I am frustrated, tired, sad and try to hide everything from everyone else as much as possible because they just don't understand.
I am grieving for my old self and life. I am trying to find my way through this new world I deal with every day. Sigh>>
This topic and everyone’s responses started a flood of tears…emotion that I have buried or tried to over the last 6months. I am known as the"funny girl" always laughing and putting others at ease. I too have issues with concentration, memory, etc. I work in the health field and must really slow down to do my job. I have lost friends to this because they don’t understand day and night pain…on and on and on…no break…it can do nothing but change who you are…I’m having a particularly difficult weekend and have the guilt of my husband saying AGAIN “we never do anything”!!! I feel guilty but the pain is bad this weekend so dark room, meds, sleep for me.
One day I took my husbands hand and told him that everytime I had a shock I was going to squeeze his hand HARD. After about the third time he looked at me and said "that lasted a good 20 seconds". Although it wasn't anything compared to what I was feeling, it made him a part of it, at least for awhile.
I had to miss Easter this year as well as my grandnephew's birthday. But I told my husband he needed to go, even if I couldn't. Some things he is just going to do without me. Do I worry what this will do to our relationship? Of course. But I can't feel guilty for something I have no control over. At least that's what I tell myself. Sometimes it even works. I'm lucky because he's the kind of guy who would rather stay at home anyway. But I can see that this would destroy some relationships.
NPAIN perhaps it's time to consider MVD. It's not foolproof but if it works....
I have had people tell me the same things as everyone else, but I find it much more frustrating that I know I have changed and am not the same person I was before. I was never really a person who gave a crap about what people thought of me, heck if you dont like me, then one less person to deal with in my book. But I hate who I have become, I have no patience, am sick of the pain, hate the meds and just want to have my independence back.
I was a happy, fun loving person before this, independent as all get out..now ..well this sucks
I have not found a balance other than embracing my anger and making it work for the better, meaning it makes me take action to fight this bugger
Wendy
I have not gotten the old me and the new me thing yet. My guess is I will when I go back to work next week from co-works. It scares me a little bit to be honest. Out of curiosity I guess asked my hubby if there is a difference between the old and new me. His answer was yeah he could and there are some big changes between the two. When I asked if he missed the old me, he of course was a gentleman and side stepped the question with tack.
The things I miss about my old self is the easy going laid back joker I was. Laughter does not come easy anymore. I’m up tight about going outside just due to a slight breeze, or how bright it is outside, if it’s raining outside ( I live in Oregon it’s rarely not raining here), how hot or cold it is, and all because it will lead to pain. Lately I’ve also notice loud noise is another thing that sets pain off, so I’m getting up tight over this too. I loved to hear my music LOUD before, and now it just scares me if it will set off an attack. Also trying to figure out how much energy I have for the day to do things. If I do to much I’ll be worn down the next day. Before everything was just go with the flow, its not that way any more and i miss that. The other is my feelings are all over the place on having TN, and also being recently diganosed with fibromyalgia too; anger, fear, sadness, worry, longing, loneliness are mainly there. Before i was calm, cool, collected, fun to be around. Im not any more, and it makes me even not want to be around my self at times. So far family and friends have been understanding and encouraging. This is something that I’m an so thankful for. Yet other than my husband; I wonder if and when they will start the old and new me comments.
There’s more I could say but I’ll stop here. Reading everyone’s comments made wish we could all find a balance between the old and new me’s very soon.
Had a friend say to me the other day "you've been sick as long as I've know you." My husband said "you're always sick". What am I supposed to say? It's true! I had bad back problems, then intestional problems, then TN. I'm doing my best not to complain but sometimes I have to cancel things when my eyes are burning really bad. THIS ISN'T SICK LIKE HAVING A COLD OR A HEADACHE. It's chronic and rare and painful. If it nothing they can see, it must not exist. "?What do you mean you can't watch the fireworks? Can't you put on sunglasses or something?" I'm worn out with trying to explain. Can we all wear a button?