My doctor told me I will not be able to drive or return to work at the school when it starts in August. I guess I knew this somewhere inside because I am off balance, vision is always blurry, and I have pain all day with occasional severe pain. It's just hard to hear from a doctor. He tried to be uplifting by saying it might only be temporary but I know it only gets worse. I'm so down. I feel like my sense of independence has been ripped away! Hard to cope but I'm still praying for help and guidance.
I'm sorry you are having a rough time, virginia girl. It is difficult adjusting to new limitations. I hope things get better for you as your doctor suggested they might. Keep posting if it helps -- we're listening..
Truly sorry to hear the news you were given. I hope the doctor was a good neurologist or neurosurgeon who gave you this advice. I still would be asking your school if you were having some good days if you would be allowed to even be a substitute or an assistant which would boost your feeling of self worth. There is always something we can do and I strongly believe that we can control our bodies and stare TN in the face ( I have been trying as I have a high pain tolerance) and when it is severe I just give in. There is always someone in worse condition than you. You will find your special spot It may take time but always be thankful at the end of the day for something - I am happy the sky is blue or I saw a bird I am loved by others so I am thankful I have other friends to talk to on this site. It has been a Godsend. And I wish you will find your new place in the world
Best Wishes and Hugs to you
Chippy
Thanks Chippy and Dancemom for the advice and encouragement. You are all so sweet and supportive that it helps. Unfortunately I can't drive right now either because of the blurred vision and other issues so working even part time is not possible. Some days I can't focus well enough to read this site or respond. On those days I just sit and bird watch (what I can see of them) or love on my dog. It's hard but I know I will adjust in time.
Hello Virginia Girl,
I have had two bad episodes since yesterday both brought on by chewing. I have the constant pain, but it is a whole lot better in the early am. I am so sorry you are feeling so poorly and want to thank you for writing to me, you have made me feel better, and not so isolated. You have much empathy and compassion, and that brings peace to me.
You and the TN folks here remind me of Lilica the dog. Have you seen this? I thank you and everyone here, thank you Virginia girl.
Oh, the video, on LIlica is there in middle. :),
My best,
Kate
Thank you so much for your encouragement and for the video Stuart. I agree the people here are so loving and uplifting-it helps so much! I have to tell you I cried when I read what you wrote. I have worked in the schools as a mental health counselor for several years and it is hard not to be there. I feel the need to help someone and without my job I feel hopeless and lack a purpose. It was so kind of you to say I helped you. I too feel so isolated and alone some days. I watch as others live and enjoy life and all I can do is watch. It is really hard to just live for those moments when you are physically and mentally able to do something. I pray the pain is better for you today and you can enjoy those moments.
Hey Virginia Girl. TN certainly can take us out of what we know and expect our lives to be. I have had it for 8 years, but I had been in a period of remission, and a year ago I was in the final year of my Master's for Middle School Science Education. I had just started my student teaching when my most recent "flare up" which has lasted this past year started up. Just like you, I couldn't drive because of medications, and was so fuzzy headed. Realizing I couldn't be a teacher was really devastating. However, because I first experienced this 8 years ago, and have had long periods of pain before, I have learned that you still need to live to the best of your ability each day. You will eventually be able to find the joy through the pain, much like loving up on your dog and watching the (blurry) birds. It is perfectly natural to mourn for the loss of your career and the life you know. Though that doesn't mean you will never be able to return to a life you love!!! We are here for you. Keep expressing yourself and working out your emotions on this site. That is definitely what this is for.
Virginia Girl, You are so welcome! It is true you know, and LBHiker your words are very comforting too. Your many years of TN are sad, and yet your positive attitude is very encouraging. This is a very difficult illness because it affects our thought process too.
I have found that gardening in the morning is pleasurable, pruning, watering my plants and garden because I don't have to think steps ahead, or hurry; all in my own time. If I lose where I am, it's okay because plants do not judge, or are concerned with precision. The garden also causes me joy because it is so pretty, and I take care of something beautiful, and the birds and bees are attracted and fed. I fill bird baths, I have a low bath that bring rabbits. The plants are not going to exist as well without my taking care of them, this makes me feel useful. I watch the various birds, their habits. I am very fortunate to have a pool to take a break in, because the pool helps me with pain sometimes. The garden has caused me to take photographs, to buy a new camera, and in the fall I would like to sign up for a photo class that is only a couple hours in the morning on one day. I will enclose a few pictures!
On another subject I am in need of help to try to explain to friends that it is not a good time to visit. I said that I couldn't talk or chew many foods because they both bring on the worst pain, they replied that the need for talking etc isn't important, just seeing one another. My friends have the best intentions, but I don't think they understand. I left it with my first note that it was not a good time to visit. Is there a way to put it so that friends understand without hurting them? Thank you for being here, I cannot express the comfort you all bring to me.
Gorgeous picture!! Thanks for sharing that!
Thanks for your encouraging words LKHiker. It does help so much to "unload" and talk to people who understand here!
Stuart you pose a good question and it's one I am struggling with a lot also. Does anyone have any suggestions on how to explain to friends and family that we are unable to have them visit because it just hurts? It hurts to talk, it hurts to chew, it hurts to shower because of the movements, it hurts to brush your teeth and wipe your face, it hurts to smile (maybe that's why we look sad so often?) it hurts to feel pressured to talk because it causes stress. What doesn't hurt at this point?