Wondering if I'll be like this forever,
 

I was thinking this morning. I wonder if there will ever be a time that I wake up in no pain. Or at least less pain.

I am only 55. I know some people on here are much younger and I feel terrible for those of you who are. It's unfair that you should have to be subjected to this at such a young age. At least I was lucky to not develop PN until the age of 48. I had my children at a young age so they were all grown. My last was in college.

My life has changed so drastically. As has all of ours on this site. But I wonder if I'll ever be normal again. I still live on the hope that I will wake up one day and I will no longer have pain, my energy will be back and I'll be able to go on with life. Most people tell me I live in denial and need to get past that and accept my disease. I think why. Why can't I hope for the best and deal with the worst as it comes.

I think I still have many years to be here. I think and pray everyday for some thought on what I can do with the rest of my life. I want to do something meaningful and helpful to others. Not sure what that can be.

When I get these thoughts I think, "You can't do much or you will lose your disability." I know I can't allow myself to sit around and do nothing. At times I feel completely useless.

Does anyone else have these feelings? Please know that as I write this I am not depressed just pondering!:grouphug:

You are definitely not alone. I am 52, with a husband and three children still home, sons 14,19, and 26. I try to keep house which means cooking and a little laundry and cleaning. Very little. Now that I have hurt my back I haven't even been up to that. My hands still allow me to knit and I have always found meaning, distraction, and productivity in needlework. The time is coming when I won't be able to do even that and I try not to think about it. I do not think I will be able to cope when all I can do is read and be taken care of, after spending my life taking care of everyone else. I do not really have any other purpose in life, and it is hard for me to let others take care of me.

As long as I can do needlework I am okay with all the other losses.

Hi hopeful
 

:hug:Hello! keep that hope alive. Start reading the forums on PN. There really are some treatments that make it better. Also B12 is really good to help with it.
Mrs.D is perhaps the best on NT, for information on PN. I use multiple therapies, and have reduced my pain greatly in the last year. For a time walking was so painful I was in a wheel chair. This year I am walking again and much better. So YES, keep the hope alive, and seek professionals who know something about PN. I go see a physiatrist, who is wonderful. This is a field of medicine that not too many know about. A physiatrist uses many different approaches to get the best results, and often think outside the box. I go for acue puncture for the first time next week. I hope that you can find some therapy that will reduce your pain to a tolerable level. PM me, and I can list some of the things I am doing. ginnie:grouphug:

Half full or half empty
 

The difference in our names says a lot. You are Hopeful and I am Hopeless. Sounds like you are the optimist with a half full glass and I am the pessimist with a half empty glass. I spent 9 years after leaving both of my jobs because I could no longer perform my job duties, thinking I would get better and be able to return to work. Each year I thought some doctor could "fix" me or at least make me better so that I could go back to work. The years continued to pass as I progressively got worse and worse. During this time period I also developed many other conditions to add on to my inabilities. I am pretty hard headed and refused to give up on returning to work until just last year. I finally had to face the fact that wishful thinking was not going to become a reality and I became "hopeless". Just last night I sent an email to a friend stating I was just so tired of always being in pain. Just a reprieve for a day or two would be welcome. I occasionally compare what my life was like before and how it is now but that is too depressing. I have finally accepted that like it or not, I guess I am retired. I would be happy if I could just keep one room of my home presentable. I bought myself a little tiny turkey to cook for myself for Thanksgiving. Cooked it 3 days after Thanksgiving when I finally had enough energy just to bathe the little bird and shove him in the oven. Christmas came and went and I even refused on a telephone call an offer of a visitor on Christmas Day as I was just not up to getting dressed or sitting up to visit.

I am thrilled when I have a day that I can stay "up", not laying down for more than 2 or 3 hours at a time.

The whole point is that I once had your hope and have lost it. Don't be like me. NEVER give up hope. I have some days when mine comes back and it is a much better place to reside. Hopelessness is worthless. It does nothing for anyone. I speak from experience. Thanks for your post as it makes me take stock and remember the benefits of a glass half FULL. (I am not always so negative,...... just in a BAD stretch of pain recently. As soon as it improves, and it will to a degree, I will be much more positive.) We do have to have some "acceptance" but that is totally different than negativity. My advice to myself is accept but keep "hope" alive.

Hopeless

Hi Hopeful:

I don't know what medications you use.

I cannot take RX pain meds, but Cymbalta helps a lot with my pain. And I take Aleve (Naproxen Sodium) too.

There are several anti-seizure medications that are very good for the pain of neuropathy, as well.

I have accepted that I will not get better as far as my PN is concerned. My Duke neurologist is trying his best to find the cause. However, each time I read about what ever the cause may be (currently I'm taking copper for a deficiency, for example, that he found), I read that eliminating the cause does NOT restore the damaged nerves. That is just in my case of course.

There ARE causes of PN where the nerve damage can be reversed. But my nerve damage cause is still unknown, although my Duke Rheumatologist believes it was prolonged usage of an antibiotic that is known to cause irreversible PN, in fact it often kills those who are unfortunate enough to have this rare but well documented reaction.

However, pain is a terrible companion, and I urge you to share and share what you are doing until you find some ways to alleviate your pain.

I have found that relaxation and meditation techniques are helpful.

I am active (!) in three book clubs, on the Executive Board of a organization, and treasurer of another organization.

My husband finds it hard to accept my level of disability but he no longer demands that I 'do things', and he understands that I cannot walk around looking at things for any length of time. We've been shopping for floor tile, and I have to sit down very quickly while he keeps looking.

I strongly suggest this book: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Bernhard, Toni

It isn't religious or preachy or full of Eastern philosophy, just very very useful and wise.

What can you change? The only thing we can ever truly change is how we see ourselves and the world around us.

Does this sound like Pollyanna? Perhaps, but we can choose to be happy and useful.

Hugs, Elaine

I have days when I feel hopeless. Overwhelmed by the thought of living the rest of my life out like this, I'm 47. I have moments of overwhelming self pity.

I have more days of being thankful.

Thankful I am not worse than I already am. Thankful I can deal with it. Thankful I don't have any other number of awful things wrong with me. Thankful for so much.

I think that is how depression sets in...dwelling on self pity instead of finding something to be thankful for. I strive to stay thankful but you know, everyone has their days when it seems impossible.

:hug:

Oh, I forgot to say that Cymbalta is also an antidepressant. Most antidepressants are excellent for pain.

I have both Immune Deficiency and Autoimmune conditions, as well as PN. Depression is a super symptom of autoimmune conditions and I can watch it come and go with an autoimmune flare, like clockwork.

Depression is insidious and the worst symptom we have, I think. Everything else we KNOW is NOT us, it is our bodies.

But when depression starts for me, it feels like it IS ME. I don't even know that something has changed, I just know that things are very bleak and won't get better.

It takes me forever to realize that it is DEPRESSION.

It is so important to move your body in some way, exercise in the pool is my choice, and also working with the equipment at the health club. the sort I sit in and move parts of my body.

Meeting with other people, helping other people, sharing here, playing games I like (Words with Friends) and reading also help me.

It is natural to grieve our losses. Do not expect yourself to move on without grief. And as I said, pain is a terrible companion, hogging all the energy, air and light, and never shutting up a minute.

I wish you all well.

Hugs, Elaine

So correct
 

Hi Stacy,

You are so spot on. The little pity parties we have do lead to depression or maybe the depression leads us to a pity party.

Whenever I start having my own little pity party, all I have to do is sign in on NT and it snaps me right out of it. There are so many people here in so much pain and suffering and so much worse that it makes you take stock and be very very grateful for own our situation and that is is better than many. You can always find people better off and those worse off. If you dwell on those better off than you, it moves you into depression. If you dwell on those worse off, you are so very thankful for what you don't have in the way of illness.

Reading post by others always snaps me out of feeling sorry for myself. It is those times when we yearn for our former lives back that we move toward the self pity.

Thanks so much for your post. You expressed it so very well. I am thankful each day that I wake up and find that I am still among the liviing.

This time of year I always start to sleep too much and feel really lethargic... depressed. I don't have this at all in the summer.

So many years ago I bought a light visor and use in first thing in the morning... for 1/2 hr. It really resets my mood and sleeping habits. It helps with chronic pain too, so I don't need antidepressants.

And I see it has come down in price since I bought mine, and the one for my son years ago:
http://www.amazon.com/Feel-Bright-Li.../dp/B0014ZPAFK

Website:
http://peponline.com/feel-bright-light/

This works really well for me. It restores your mind and replaces the light lost during winter time.

Mrs. D a light visor sounds marvelous. I have a stationary Nordic night, that I read by when the days are short and gloomy.

But a visor would be so easy! May I ask what brand you use?

Thanks, Elaine

I gave the links above.... I think this one is the best.

That does sound nifty. I find I am also sleeping too much these days, not sure if it is the fatigue, season, depression, or medication, but I miss waking up at dawn with energy. Those days are probably gone as it takes so long to do everything, it is a half hour or more before I am done in the bathroom and ready to come downstairs.
Mrs. D., does the light visor help with daytime sleepiness?

Yes, it depends on the person...the timing of the lights.

The light wavelength is a blue green...and very effective at resetting you. I am taking less naps this week. Hubby got fed up with me sleeping so much! LOL

I have a old post on Depression here when I first bought the visor:
http://neurotalk.psychcentral.com/sh...ighlight=visor
This link gives another link for further comments.

I didn't seem to need it last year. I originally was still working when I first purchased the visor. (my neck and shoulders were giving me much trouble then).

You can walk around with this visor, but you have to be careful as it changes what you can see, esp. the feet. So I only use it when sitting down, and mostly on computer.

The price has come down quite a bit since I bought mine, and also one for my son who was interested also.

It is easy, and after the first day---shock at the color/brightness-- there is nothing to it. I leave mine plugged into the charger all the time, so I am pleased that the battery is still good. It has an auto shut off feature and two intensities of light. I only use it on the less intense one. Most of the time for 1/2 hr. But sometimes I increase to 45 minutes.

This sounds like something I would benefit from.

I have always been more emotional, depressed, etc. in the winter. Hubby says I have that disease, winter blues. It always happens in winter.

Will check this out. thanks

Thanks to everyone for all of your replies. They all have made me think.

Hopeless, I'm happy to hear that you may begin to think of the glass half full more often. I know how hard it is to due that.

Susanne, I know how hard it is to become the person needing the care. That is one of the hardest things for me to accept. During my career I was a nurse.

Ginnie, I have been on the site for a while so I do take many of the supplements recommended here. You may not see much from me because I go on and off the site. I don't understand why I do this. I'm trying to me better about that because I feel better when I talk with people who actually know what I feel like.

Stacy, I'm the same as you I go through pity parties. I try very hard not to let them last long. I pray many times in a day thanking God for everything I do have. Doing this helps to remind me that I have a lot. Actually, the only things I don't have are health and much money without my job. My family and friends are awesome.

Elaine, I do take Cymbalta, Tramadol and Synthyroid. I also do not know what my PN is caused by. Idiopathic! I have some possible ideas but probably will never know.

Mrs. D. thanks for the idea of the visor. It sounds great but I will have to save for it. Christmas was a killer on the finances.

I actually don't believe I am depressed. I'm very good at knowing when I am. It comes off and on. However, I do think that the winter changes my mood. I too am so much happier in the summer. We have had so many dreary days lately.

I give thanks for all of you!!

Hi hopeful
 

:Tip-Hat:Thank you for your career as a nurse. I have learned something. It is nurses who save people lives. They are the ones who discover a problem first. You should have been paid what football stars are paid. My Night nurse caught an error. I even wrote a thank you note when I was discharge. You did a lot to help suffering. ginnie

Hi Ginnie,
Thank you for saying that. It was so nice of you to write a note for your nurse. I'm sure it made her feel really great.:)

Hi Hopeful
 

I really meant it, thank you. My night nurse caught a big error regarding narcotics for after my fusion. I didn't get enough to help for the first 24 hours. He caught it that second night when he came on duty. He was God sent as I was suffering quite a bit, trembling, the whole works. I will never forget that kindness. He questioned why I was in so much pain.....actually looked at my records. I hope that kindness is always extended to you too Hopeful. Ginnie
Nurse Nancy is on NT too and a few others, I extend my thanks to them too.....:grouphug:

Hopeful,

I empathize with you and all I can say is that my illness abated after about 4 years to the point that I was able to live relatively normally with little pain. So anything is possible I feel. I was never one for anything "new age", but the more I mediate and the more I practice positive thinking the more "hopeful" I am feeling and that is a very good thing.

When I worry about the future I have to remind myself that nobody knows what the future brings. I have a client who is in his early 80's and still quite spry. when I met him he told me in his community he is the equivalent of the "black widow". I asked him why? He said his wife died of breast cancer. He then married his 2nd wife (a much younger woman) who then also died of breast cancer. He married a 3rd time though he was cautioned by people not to remarry and his 3rd wife dies of cancer too! I mean what are the odds?

So when I get to worrying about the future I think of this proverb:

If you worry about things and they never eventuate you will have wasted energy,emotion, and time.
If you worry about things and they do eventuate you will have actually lived that experience twice. Once by worrying about it all the time, and then a 2nd time when it truly happens.

I am sure you will get better Hopeful, it just takes time. My 9 years on the board I have seen many many people say they have recovered and have moved on. Sometimes they pop back on just to say hello and and share some good news. I am sure you too will be one of those people.

Aussie:)

Thanks Aussie! I am keeping hope alive. I don't worry every day. It's just sometimes when I get to thinking to far into the future. I do meditate and most days stick to positive thinking. Just slip at times. Sometimes for a few days in a row. Then I go back to positive thinking.
I'm so happy for you that your pain abated to the point it has. That's great news to hear.
I also like the proverb.

Thank you very much Hopeful. One last thought I had, I don't know how old you are but I am 41 now. I think female hormones go crazy sometimes and that alone can cause worry,anxiety, and sadness. I have gotten teary before and didn't even know why! Hormones can play silly buggers on our perception of life as well.

Aussie:)

elaine
 

Elaine I can only assume your prolonged drugs was cipro, avelox or levaquin? As I am blown away from this drug, nuked.:confused: