Normally I'm a pretty upbeat positive person but I'm in a flare up of TN and MS symptoms right now and find that I've been really worrying about the future. I've read that TN tends to get worse over time and I just can't even imagine. Is there any real hope for this disease or are we doomed to a very painful future? Working on my attitude, but not feeling very hopeful right now.
~ Vicki
Vicki, Fear is also my biggest problem at the moment. Fear of the unknown. I am afraid to make plans in case I am in pain at that time. I am so lucky I am not in pain, only now mild discomfort, but how long will this last? My family say be positive not negative, but in worrying are we just being realistic and preparing ourselves for the future? My husband says that the future (constant pain) may never happen, I say from what I have read it says i will. I am a Christian and I do pray, this helps and does give me hope.
Hi El, thanks so much for your comment. Good to know I'm not alone but I'm sorry you have to deal with the fear, too. Our husbands sound so much alike! We've had the same discussion and I've had the same response when he says it may never happen. Do your friends and family read up on what TN is all about? A few of my friends have but not my husband or kids. I think it's too scary for them. I really think it would help all of us if our loved ones were better informed about TN, don't you?
Hang in there and write anytime. Saying a prayer for you. :)
~ Vicki
Hi Vicki, my husband will not read anything, although he is coming along to my appointments with me. I show him items i read, he tells me to take no notice, as all our bodies are different and we all react differently. He gives me hope so I like him to tell me these things. I dont think any of my family have bothered to read up on it either, because its not an "illness" as such i dont think they understand. I am also saying a prayer for you x
If I start thinking about the future, I get scared and upset, which leads to grieving, then depression. I try to take things day by day, but I've always made sure to plan my future, and right now I can't do that. It's hard. You're not alone.
I agree with you all, it is immensely difficult to NOT think of the future in a dismal way and worry about the future. I have a friend on here who has had TN for 50 + years and he is still positive in his attitude about Our condition so take heart from that.
My husbands mother was a nurse and had best friend who had TN and explained my condition to him, that was a godsend. My brothers have dismissed my health as Jackie's HEADACHES!!!! It drives me crazy it really does but I have given up trying to explain and just don't discuss it at all with them.
By the nature of this group we almost always hear about members in crisis or struggling in some way. In truth there are lots of positive stories out there, we just don't hear about them as often which is a shame. My positive and healing thoughts go out to all of you.
Hi Vicki,
I to worry about the future, I'm unable to work at the moment due to the side effects of the meds so I'm really worried about my return to work and whether I'll ever be able to return to my line of work. I think that by reading other peoples posts on here, everyone has their individual worries about some aspect of their lives so I really don't think we are alone on this issue. I am trying to remain positive but it is hard, especially when you are in pain and the kids just say, Oh, is it hurting mum, they really don't have a clue as to just how bad it is. they to haven't read up anything about TN, again like others have said , I think it's hard for them and if they don't read up on it then it's not quite real. My husband and friends have read up about it so they are a bit more understanding. When I was fist diagnosed I joined a national TN association who sent me a lot of information and leaflets about the condition and also a card which I carry in my purse in case I get a bad attack when I'm out which lets people know why I am in pain and what to do; I tend to carry this information pack with me when I go to various appointments, as like others, I am finding that various professionals do not know much about this condition.
Like yourself, I feel quite angry towards this condition and how it is affecting my life but I am trying to gain a sense of perspective from the examples given of people on this forum of finding a way to cope relatively well with the illness. One friend in particular has proved that you can live with TN and hold a responsible job down; this is something that I would like to aim for.
All that any of us can do is to take one day at a time, but rest assured that we all have the support of other sufferers on this forum who understand what we are going through.
Take care
Mandy xx
You read my mind Vicky..I actually came on here today to post something similar. After months of being in intense pain and not being able to function, I finally decided I would take my best friend up on her offer to spend the day in San Francisco. After being on tegretol despite the horrible side affects, Im still able to manage. I took her up on her offer, because I needed some fresh air and a girls day like the good ol days. Well all of a sudden my pain started...and it went from mild to worse, and even more worse.
So there I was ruining our day out. I was trying to fight it for a while and she kept making conversation with me. I wondered why she wouldnt stop talking, didnt she see I was in so much pain? I toughened it out and we eventually left home. I came home and took my tegretol.
I sat up in my bed and reflected on my life. Im 24 years old, a student, career woman. I had a very active social life, everyone wanted to be around me, I was that person that walked into a room and people would say "now the party has started."
Now...my friends have just stopped inviting me to things because they already know what the answer is going to be. When they attempt to come over and see me, I wonder whats the point? Im in so much pain I cant even talk. My job..I love my job, I have all these projects waiting for me, but I can't seem to start or finish any of them.
Im not married...I cant even imagine getting into a relationship because of my health.
I too wonder about my future and my life. I dont want TN to take over my life....I dont want to be on medications for the rest of my life that dont make me feel like myself. Whats the answer?
Recently I got a brain MRI done that took over an hour...still waiting on the results.
I just seen my friend post on her facebook about how shes headed to a meeting, a conference, and then dinner with the girls. That used to be me....the busy body. Now Im just this person whose in pain all the time. I still get the "how are you, are you better?" Im tired of always saying "no, still in in pain." Im a fighter, but what can I do, the pain is out of my control.
What the future holds I dont know? It scares me....this has changed my life in so many ways. I too believe in God and hope that He will see us all through this.
Best,
Saeeda
Hi everyone, so nice to hear from all of you. Thanks for sharing your experiences with TN. It's good to know I'm not alone but it makes me sad to know that you're all suffering, too.
Jackie, that must be really aggravating and discouraging that your family doesn't seem to understand or get what you're going through. That would make me feel so alone. Good things you've got us. ;) I have MS, too, as you probably know by now and would love to be able to message back and forth some time.
I'd like to respond to every comment but I'm really feeling exhausted today. The IV nurse came and put in an IV of Solumedrol this morning so I'm hoping to get some relief from this. I'll be back in a few days to respond to each of your comments because I really appreciate you taking the time to write.
Oh, I did want to let you know that I can soooo relate to you, Saeeda. I've always been an outgoing person that makes friends really easy. I like to joke, have fun, offer encouragement, etc. Now I barely make it out of the house due to my MS symptoms and TN. I'm sure your friends still think you're the greatest and love being around you. Wish I had more encouraging words...just know you're being thought about and your definitely not alone. Feel free to message me any time.
Thanks again,
Vicki
Hello Again,
I used to work so hard towards the future. Then one day slam TN and Ms I try to think of it as learning the hard way to slow down. Live for the moment. We know what it is like to suffer and loose so much time. So when I have good days I really appreciate them. Everyday day I try to find one moment That makes the day worth being alive. It sure isn’t easy. After my wonderful husband died of Cancer, I try to remember that no matter how bad the day is, It’s a day he didn’t get.
Love and Laugh as often as you can.Don’t worry about the future,no matter how much you worry or plan the future arrives in ways you never thought of.
It definately has taken turns for me in ways that were a surprise.
I now live on a lovely boat in Alaska.( I started with a sunk boat, I didn’t know what it looked like,it was still under the water)Sure didn’t expect this life style.It sure can be interesting. Harbor rent is just 200 a month.Well lets see what today brings.
Happy Holidays to All and days with out pain to enjoy
Thank you Joylee, your name is very apt for your positive attitude
Thank you Vicki...I hope you find relief soon!
Joylee- thank you for your positivity.
I had a conversation with my older and wiser sister today. I would like to share with yall what she said to me..
"Saeeda...take it day by day. Why are you worrying about your future, when you don't know what the future holds. Trust that it will be better and work towards brighter days. Work on making yourself feel okay today...and remember when you wake up tomorrow it'll be a new day."
So glad to know all of you and have all of you to talk to.
Sorry for taking this off thread. I was reminded of something a very wise person told me 8 years ago when I was diagnosed with a life threatening condition. I think Saeeda’s sister talks very similarly.
I was told not to even think about tomorrow, next week, month or year etc. Just think about TODAY. When we realize we will cope today, we can get through the pain and we will live today it somehow relaxes the body and can make life a little easier to cope with. We none of us can know the future, even healthy people without TN/ATN . I am very heartened by Joylee’s wonderful disposition, I am going to aim to find that happiness in my life with that in mind. I still consider ompared to most that I have a blessed life.
Just thought I'd share a photo I took with all of you. Thanks for your positive message, Joylee and Jackie. And, I am so jealous that you live on a boat, Joylee! Hope this is a good day for everyone. :)
Hi Jackie, you will definitely not tire me. I've had one friend with MS that I've kept in contact with for 8 years. It's been so nice to have a friend who truly understands.
Hope we can message back and forth. Keep me posted about MS and praying this is a good day for you. :)
Big hugs!
~ Vicki
This has been such an uplifting thread, thanks to everyone who contributed
I think so, too, El. Is there an inspiration or encouragement group? I was thinking we should start one up or at least join it.
xo
Vicki
fantastic idea, i will join! It would be good to tap into when your feeling down, to read the previous posts xx
Awesome, El! I think first I'll check to see if there's already a group going. Be right back.
O.k., El...I started a new group. It's called "ENCOURAGEMENT". Hope everyone who has been a part of this encouraging thread will join. xx