I make sure everyone hears me

Perhaps that is a better idea!

I have been ill for a long time, about 18 years. I have had some problems that required surgery in-between all of this mess and thought that each time I had something fixed, it would banish this illness as well; that it was all somehow related.

I remember the sorrow I felt when the illness returned...

The doctors have found SFN, arthritis and dysautonomia, but no cause. They are working on it, but it is so frustrating and I am worried that they will not find my answer.

I am particularly low right now, but I guess I do have my highs some times.

What bothers me is the inability to work. I gracefully "retired" after over 20 years at a career that I loved, made me feel smart and kept me motivated. Unfortunately, it became impossible to do my job anymore. I feel like I am in a void right now - unproductive and ill.

I am just hoping for a turn of events. Every morning I wake up, I hope that this will be the day it happens - that I will feel healthy and energized... pipe dreams?

I suppose I am not yet coping, or have found any acceptance in this mess. It is not an easy thing and I wish there were more concrete answers.

Mere

To be utterly honest, Mere I feel just like you do.

Many days, especially lately, I want to sit in bed with the blanket over my head.

I guess that is not coping. It happens.

I am tired of having PN, and some one saying, 'Oh my feet fall asleep too'.

I am tired of saying I have Sjogren's and some one saying they have dry eyes too.

I am tired of telling people I have autonomic neuropathy and having them say, "What?"

None of it fits together in a neat little package....I just wish I could say I had a specific disease and have people understand what this feels like....truth be told, I don't know if any one cares. My husband as nice as he is, is burning out....

Yesterday, the nurse called with my ENA and said, 'Good news, your ENA is negative.' Well how dumb is that??? I kind of let her know that in an offhanded way. A negative ENA with highly positive ANA is not good news.

Yup, the blankie looks real good today. It looks even better on Mondays.

I empathize so much with Mere. I also was working in a job where I felt needed and useful and (most of the time) enjoyed myself. I was trying so hard to hold on - I had my hours cut to 4 per day in hopes I could continue. Unfortunately, I couldn't cut it.

What I also suggest is that you get psychological help if you can. I needed a lot of counseling to deal with the grief and loss. Even hospitalization at one point. There's a lot of anger and frustration which needs to come out in order to reach the acceptance stage, sometimes.

Mine also. We were married young - I was 19 and he was 21. He probably would not have married me had he known what was to come...

He is kind and gentle, but I know he is sick of dealing with it. I feel like major baggage.

Mere

No kidding Cyclelops, WTF. When people I know complain about minor ailments, I want to slap them. I especially dislike people comparing their afflictions to mine. They really have no freaking idea. I also dislike it that people feel obligated to talk to me about my health. Come on, there is more to me than "my health" and I am sure that they do not find the conversation especially stimulating.

I also dislike having to try and explain why I am not capable of holding a job any longer. I am sure it is a bit strange when people see a 47YO woman with a mortgage, husband and no children not working. Many times people probably think that I am lazy. Though I am far from that. I started working for money when I was old enough to babysit, cut grass and run errands. I then worked all through HS and college. My parents could not really afford to send me to college, so my husband and I paid for my night school tuition for many years.

Boy, this has really turned into a rant.

Sorry about venting, guess i needed to...

Mere

I realized I needed to "gracefully" retire from a 30-year career, after I screamed at someone to SHUT UP. I supervised subsidized housing properties, and when the residents were unhappy with site management, HUD policy, or life in general, they called me to complain. These were women who had never worked a day in their lives, and were required to comply with HUD policy or loose their subsidy. The sicker I got, the harder I found it to listen to their excuses and complaints.

I always made it a policy to let them "talk it all out" before I tried to respond. But, the whole time I was listening, all I kept thinking was they were more capable of holding down a job than I was. Yet, I kept putting in my 60 hours a week, just so their whiney little a@@es could live off my tax dollars.

I finally had it after an emergency hospitalization. I probably tried to return to work too quickly, or maybe I had finally just run out of patience, or maybe the meds made me cranky, or....

It really doesn't matter, because I found that I am finally relaxed and at peace. Friends used to ask me if the stress of the job contributed to the neuropathy. I always told them No. But, I have finally realized I was wrong.

So, who cares if "they" think you are lazy. You know better. Just tell them the pain feels like a sunburn rubbed with steel wool. They will never think you lazy again.

plgerrard, I am sorry to hear that you also had to "retire". It is tough. Stress probably has affected us all more than we know...

You are right about not caring what people think. I will have to think of the description you suggest, i.e., sunburn rubbed with steel wool. Now, that's a good one...

Mere

3 years for me now and gave up my business which netted me up to 25k for 3 days work running my own marketing seminar business for very large corporations but involved standing on my feet 14 hours per day for a very intense and stressful sales events. That stopped when shoes became my enemy. Just recently attended my mothers funeral on crutches and a bandaged leg with a flip flop on the other.Told them I fell down some stairs. That was a lie but better than turning up in shorts and sandals and trying to explain I have peripheral neuropathy to every single person there . you can see they are thinking "you look fine to me"
I love sailing so am about to purchase a yacht and sail around asia where I live. People say how can you do it when walking is tough?. well you dont walk much on a yacht. There is always a way to find something to do rather than lay in bed and let it wear you down mentally.

On a side note My neuropathy nearly went away about 12 months ago but came back with a vengeance, bugger!