Does anyone have some hints for dealing with feeling miserable?
I am certainly feeling very sad tonight. Taking Tegretol, has reduced but not stopped the pain. Since I first experienced symptoms in my forehead, they have got worse and have crept down my face. My eye is a real issue, but now my lips are numb/tingling and distinctly twinging with short burning pain.
today I had my first MRI - that was a bit hard. I will see my nerologist on Friday. I wonder what he will tell me.
Tonight I am just sitting here alone again, in pain and so totally miserable. I know that it is wrong to feel sorry for myself, but between the continual pain and the side effects of the meds I am sinking a bit. I have tried a diet of chocolate...
I feel your pain, I've been miserable for the past few days too with the meds not working and me just not knowing what to do. Like you, I've been craving sweets, I noticed I've put on weight since I started Neurontin, I don't know if it's the pills that make me want junk food or if it's me just not being bothered about what I eat any more (I used to have healthier life style then most people before this pain hit me). What helped me was talking to my colleague, who's also a friend, today. She can't feel my pain but she's understanding. I also draw a plan of things I can do/docs I can see about my problem - it took a bit of research and I had to work with different scenarios because I don't know what exactly is wrong with my jaw as yet, but I think it was well worth the time. Like you, I have times when I feel sorry for myself and sometimes also angry that I let this thing happen to me. I know these negative feelings take away energy but can't help them, I just can't see the light at the end of the tunnel when I've been hurting for days, but my colleague says, and she's right, that one day I may wake up and the pain may be gone or that one of the pharma companies will come up with a drug that works....until then I should just try to live as well as I can. I'm also waiting for my MRI results (also first timer), I'm seeing my neuro Monday next week...I'm getting mentally prepared for that appointment and having a plan/questions I'd like to ask in my head is helping, I think. I wish you the very best of luck and hope you'll get over this painful period soon.
I too resort to a diet of chocolate...and im lactose intolerant! Hang in there, those low moments will pass and good days are just around the corner. Afterall, isnt chocolate suppose to make everything better! :) All the best with your Nuerologist appointment on Friday.
I have been trying to crawl out of the miserable hole for a few weeks. It is a huge fight for me. I’ve tried antidepressants and well they just tend to make me more depressed. I have been trying to retrain my self to think of the brighter side of things. Another member mentioned this can help. Also I have started gardening again. It’s relaxing. Then of course I have a nice stock über treats. Today I picker up some hand made truffles the white chocolate blackberry cheese cake. I’m sure but it will get better some how for all of us. I hope your day gets better. Good luck with your neurologist appointment and please keep us updated.
Hi Margi. I started out this morning with such sadness myself. Sometimes I want to just scream from the rooftop but feel no one will hear me. Thank you for sharing. This is tough. Not only do I deal with the pain in my face, the issue with my eye, my lips numb/tingling, I am constantly trying to cover up my disfigured face, looking for a better hair do to take the focus off of my face and deal with the fact that I will always have to wear wigs due to surgery and an ensuing infection that occurred that caused my hair to not grow across the top of my head. It feels like I lost a loved one who’s never coming back. I am trying to cope with this. Some days are better than others. It did help to read your post. I cant believe I’ve said all this but I needed to say it to somebody. Feel better Margi.
I went through this in a bad way late winter and through the spring of this year. I came here a lot, and read a lot, and didn't post much at all. Sometimes it helped, and sometimes it made it seem more hopeless. Sometimes I'd work hard to distract myself with anything, movies or tv shows; sometimes it helped and sometimes it made it worse because it became clear that there were times I couldn't even handle a movie for an hour or so.
I tried walking, sometimes it helped, sometimes made it worse.
I tried a million things, and all of them worked sometimes and made it worse sometimes.
My point is, keep trying different things, never give in or give up. The thing you tried yesterday might have made the pain worse, but today maybe it will help you take your mind off of it even just a tiny bit for a tiny moment; and maybe that tiny moment is just enough to make it through until the next tiny moment, and so on.
Thankyou everyone for such encouraging posts and wise words - they have helped me more than you know!
I am determined to find a way to drag myself up and out of the blues. I am going to give a big focus to very healthy eating and (keep the chocolate for the really bad days). Today I had a day off work and went clothes shopping for bargains at the sales. and tomorrow I will start walking and doing some yoga to help with my inner strength.
I now realise just how important sites and groups like this one are - not only does it help us all to be able to put our thoughts, fears and feelings into words, but it is both humbling and wonderful to communicate with someone else who is suffering too.
I do think that the medicines are certainly contributing to putting on weight - and the symptoms that we are suffering seem to drive a lot of us to retreat away from doing 'normal' healthy things.
Your colleague is a very wise, wonderful friend. I do like her outloook!
Good luck with your MRI results and your nexdt visit to your Neurologist - Please let me know how you get on?
Take good care
Margi
Oldriska said:
Hi Margi,
I feel your pain, I've been miserable for the past few days too with the meds not working and me just not knowing what to do. Like you, I've been craving sweets, I noticed I've put on weight since I started Neurontin, I don't know if it's the pills that make me want junk food or if it's me just not being bothered about what I eat any more (I used to have healthier life style then most people before this pain hit me). What helped me was talking to my colleague, who's also a friend, today. She can't feel my pain but she's understanding. I also draw a plan of things I can do/docs I can see about my problem - it took a bit of research and I had to work with different scenarios because I don't know what exactly is wrong with my jaw as yet, but I think it was well worth the time. Like you, I have times when I feel sorry for myself and sometimes also angry that I let this thing happen to me. I know these negative feelings take away energy but can't help them, I just can't see the light at the end of the tunnel when I've been hurting for days, but my colleague says, and she's right, that one day I may wake up and the pain may be gone or that one of the pharma companies will come up with a drug that works....until then I should just try to live as well as I can. I'm also waiting for my MRI results (also first timer), I'm seeing my neuro Monday next week...I'm getting mentally prepared for that appointment and having a plan/questions I'd like to ask in my head is helping, I think. I wish you the very best of luck and hope you'll get over this painful period soon.
Hi Betty - I can't believe that you resort to the Choccy Diet too...LOL the demon choclolate has been my friend far to often lately! So today I went for retail therapy.
Best wishes to you
Margi
Betty said:
I too resort to a diet of chocolate...and im lactose intolerant! Hang in there, those low moments will pass and good days are just around the corner. Afterall, isnt chocolate suppose to make everything better! :) All the best with your Nuerologist appointment on Friday.
Hello Kari and thank you so much for sharing with me. I think you have a very important solution - we need to really work at teaching ourselves to be positive about things. I am so pleased that you have taken the first step by recommencing gardening - and of course there is always chocolate as a fall back option!
My fingers are crossed for my neorologist appointment - I don't really know what to expect, but I am going there with a positive attitude!
Margi
Kari said:
I have been trying to crawl out of the miserable hole for a few weeks. It is a huge fight for me. I've tried antidepressants and well they just tend to make me more depressed. I have been trying to retrain my self to think of the brighter side of things. Another member mentioned this can help. Also I have started gardening again. It's relaxing. Then of course I have a nice stock über treats. Today I picker up some hand made truffles the white chocolate blackberry cheese cake. I'm sure but it will get better some how for all of us. I hope your day gets better. Good luck with your neurologist appointment and please keep us updated.
The sadness that dealing with this type of condition is quite overwhelming - I wonder if it is so much worse because the pain, issues with our eyes etc cannot be seen by others? Mary, I guess that most people around you never really guess what you are going through, let alone do they have any idea about what you are feeling in your heart. I cannot begin to imagaine how much pain you are feeling by what has happened to you and the loss you are dealing with.
Your response to me has really helped me too. I have a mental picture of you as someone who can put on a brave face nearly every day - except for some days when it is almost too hard. Please remember the good days - they are proof that you can do this, and that there is some joy for you to focus on. and do write back?
With many kind thoughts
Margi
Mary said:
Hi Margi. I started out this morning with such sadness myself. Sometimes I want to just scream from the rooftop but feel no one will hear me. Thank you for sharing. This is tough. Not only do I deal with the pain in my face, the issue with my eye, my lips numb/tingling, I am constantly trying to cover up my disfigured face, looking for a better hair do to take the focus off of my face and deal with the fact that I will always have to wear wigs due to surgery and an ensuing infection that occurred that caused my hair to not grow across the top of my head. It feels like I lost a loved one who's never coming back. I am trying to cope with this. Some days are better than others. It did help to read your post. I cant believe I've said all this but I needed to say it to somebody. Feel better Margi.
Thank you for your very wise advice. I agree that right now no single day is the same as the last - but the most important thing is to never give up trying! It is certainly very frustrating that something that seems to help one day does not the next... a bit like the way that the areas/intensity of pain can sometimes change - with no warning.
take care, and thankyou again
Margi
wrigley said:
I went through this in a bad way late winter and through the spring of this year. I came here a lot, and read a lot, and didn't post much at all. Sometimes it helped, and sometimes it made it seem more hopeless. Sometimes I'd work hard to distract myself with anything, movies or tv shows; sometimes it helped and sometimes it made it worse because it became clear that there were times I couldn't even handle a movie for an hour or so.
I tried walking, sometimes it helped, sometimes made it worse.
I tried a million things, and all of them worked sometimes and made it worse sometimes.
My point is, keep trying different things, never give in or give up. The thing you tried yesterday might have made the pain worse, but today maybe it will help you take your mind off of it even just a tiny bit for a tiny moment; and maybe that tiny moment is just enough to make it through until the next tiny moment, and so on.
one thing I did once that helped a little. i had a few tolerable days & wrote down “when I feel things will never be different, I need to read this note & remember that things can get better.” sometimes I read it & it helps a bit.
however, I agree with wrigley who said sometimes the same thing will help or won’t help, just depending on the day.