trying to feel normal for a bit!
 

Since the onset of the heart attack followed by the Small Fiber Neouropathy disease I have not set foot in the local diner until this morning. It was nice yet also very different. I look fine, walk fine but feel so disconnected to everyone that can walk & use their hands without any pain. The acceptance of whom I am now is going to take a long time. Of course everyone is different but I'm having a terrible time getting used to this and honestly don't want to. Any sage advise on how to adjust and feel happy being alive?

I had dreams and plans for myself just like anyone and now they are all gone. Not sure what to do..........

Thanks....

Cliffman :)

Change is always hard
 

If you don't want to get used to the new conditions, it could be that you are not ready yet. Physical as well as mental changes have their own timeline. Neuropathy is a great teacher of patience. If you survived a heart attack and you are still walking around you have at least two things to feel fortunate about. Acceptance in itself is an admission that you are going to be different. Try to believe that your symptoms are going to change over time and what you are experiencing right now may not be way you are going to end up. Trials and tribulations are good proving grounds to see if you are mostly pessimist or optimist. You are still early in this struggle, so don't beat yourself up. Patience will come slowly and slowly you will cope. Good Luck, Ken in Texas.

Ken I always feel better after reading your posts. Thank you!

Cliffman :)

Sound advice. I understand the need to do the things you know are wrong. We all need to break the cycle of "trying to be perfect" every now and then. I think it's healthy. You have to make sure it's a 'holiday' and not an 'everyday' though. SFN will alert you fast to the realization that you are betraying your body's needs. In a way it can be a good alert system for your body. i know when I get intense flare ups that it means i have allowed myself to fall back into a habit that is a pain trigger. In my case it's wheat, sugar, starches, etc. SFN is a brutal thing to suffer thru because it is always there, there is no respite from it. I think it also forces you to give up some bad habits. I know my SFN doesn't hate me for eating an apple or having a nice bowl of grilled chicken and sliced carrots over spinach and romaine with a dash of grapeseed oil...wonder why????<sarc>

I actually find some of my most optimistic moments in doing intensive research on the options for treatment on the condition. Then i can try different supplemental therapies (some are certainly helpful). I also look to the words of scripture (not gonna preach at anyone on that though). I am self employed as a hobbyist, i can escape much of the pain by painting and doing artwork. I have a wife, kids and pet that also bring me much cathartic comfort. Watching them enjoy life makes me happy even if it frustrates me that i can't always enjoy it with them as much as i'd like to. The key thing in many ways is DISTRACTION. DO NOT focus on the pain. it WILL exasperate it. Its why meditation works for many. I don't believe in meditation - I go into intense prayer instead. Either way those techniques work.

Life is always about adjustments. It's never smooth sailing for anyone. Embrace what you are and rebel against self pity.

These two lines hit exactly on the way I often feel.

When I walk through the grocery store, etc. I look at others and wonder if they are in pain the way I am. I wonder if I could see it in their eyes if they were. I wonder if they can see the pain in my eyes.

Like many, I saved for and dreamed about what I would do in retirement. Now I've had to accept that it will probably be earlier than I planned, and not nearly as much fun.

Yet, life goes on. I like to ride my bike - I can still balance fine and biking hurts much less than walking. I read books. I enjoy good wine (I know its not good for me, but I figure enjoying a little bit of the really good stuff is better than swilling down bottles of the cheap stuff). I drive my old Camaro as often as I can, even though its tough to work on it any more. I enjoy spending time with my kids. I listen to music, although I don't hear it as well through the tinnitus. Like many here, I watch TV and movies (I love the new leather recliners they recently installed at the local movie theater - so much more comfy, I can kick off my shoes and put my feet up.)

So, I still enjoy life - just a lot less vigorously than I used to. I'm fortunate that I did quite a few of the things I wanted to do earlier in life. My father had a lot of plans for retirement, but he became ill and was able to do very little by the time he retired. One of the last things he told me was "do the things you want to do early in life, because you may not be able to once you retire." Truly words to live by.

Sorry for the ramble, probably didn't help at all. Just know that everyone finds their own ways to cope, and their own ways to enjoy life. You just need to be willing to take a different path than you thought you would before PN became part of your life. :)

I'd like to think my dad told me the same, but he did so from the grave. He died when he only 42, and when I was getting ready to turn his age, I quit my job. I spent several years kicking back, traveling, golfing (he was a fanatic) and just enjoying life. I almost felt like I could hear him egging me on. :)

And then right when the funds were running low, and I needed to get serious about getting back to work, the SFN hit. What timing. I was scared to death for all kinds of reasons, which of course just made my symptoms all the worse.

Having come to grips with it and accepting that this will likely be with me for the rest of my life, I take a lot of comfort in having lived the life I have and am very grateful. I'm back to work full-time now, and will work as long as I can knowing that my mid-career sabbatical was effectively my "healthy retirement."

Interestingly, I find myself enjoying the simpler things in life now, and don't lament not feeling like traveling or being on the go all the time. I guess I've become comfortable in my discomfort.

Hi Cliffman

Adjusting to your new life is an ongoing process - you'll go through stages of denial, anger, despair, grief, hope and eventually find some sort of acceptance. It's a tough journey but each step is preparation for the life now in front of you.

At the beginning it's difficult to accept that your dreams are gone and you wonder where happiness went. It's taken me a while - I was so preoccupied with finding answers/treatments for my conditions that I neglected to do things that were good for my soul. I now consciously include treats such as short breaks to scenic places or an indulgent personal purchase that brings me joy.

Another important thing is to try and be kind to yourself - it's easy with the despair and pain to blame yourself, to feel useless - take the good days and run with them - do what you can, and get through the bad days by allowing yourself the rest you need without feeling guilty.

I don't know if it's the Gabapentin or me but I feel angry this morning and in denial. I have only been on the Gaba a few days at 100mg 3x daily. My thoughts are that If I can not live the way I did before the SFN than I don't want to be here at all. I feel groggy and out of sorts. Sorry, I don't want to bring anyone down but I have to be honest about my emotions with those that can understand.

Cliffman

Oh boy do I understand!
 

My thoughts are similar to another poster who suggested you go slower building up Gabapentin to 3 times a day. I take 300mg Gabapentin at night only (with dinner.) When I first started the drug about 4 months ago, just going from 100mg to 200mg affected me badly. Besides the bloating the next day I felt I was 2 steps behind everyone else. I have always loved my sharp-witted brain and I became very depressed and angry. In 2 weeks I went to 300mg and I woke up the next day very groggy and depressed. I went back to 200mg, but after a week of poor sleep I tried again. It took about 2 more weeks, but my body adjusted and the fog has lifted.

I retired a little over a year ago and I had it all planned out. I waited until I was 66 so I could get full social security and be on Medicare. I was having the most wonderful time doing things I loved for about 6 months. Then out of nowhere this hit. If people looked at me now and saw my blood test results they would not suspect a thing. Angry, depressed, feeling sorry for myself, not wanting to live this way were all thing I have felt.

Through due diligence on my part by finding the right people to help me, continuously researching, being on this forum, taking the supplements that work for me, eating foods that help with inflammation and cutting down on the ones that contribute to it (sugar, etc.) I have improved. I now have a better understanding of most of my triggers and it is up to me to avoid them or pay the consequences which helps take me out of the victim role. This phase of my life isn't the way I had planned it to be, but it's better than it was 8 months ago and definitely better than other options.:hug:

The feeling happens, but it WILL pass. Wait it out!