Paresthesia, abnormal sensations

@fisbo I did receive your first reply. It seems some of your posts are coming through a bit odd. Can you see how they look? What device are you using? A smart phone, a lap top?

Sorry that I'm not too familiar with what
" =C2=A0" means or why "=2E" is appearing before each new sentence.

@fisbo Oh, my dear, my dear... I do understand your comment about not caring to be glamorous any more because of pain. Ugh, pain drains us, but....only if we allow it to. Surely there are better minutes, hours or days than others and it's those small wins that have to be our motivation. Can you think of a small win that you may have had recently?

I began becoming disabled around age 43 and by 46 I was on temporary disability from my 26 year banking career. I've always taken pride in my appearance (just like you), since I was a teenager and studied cosmetology. It was a hobby and brought me joy. Once I was no longer able to work, I thought, why, why would I continue to put on make-up, jewelry and style my hair daily when I sat home by myself in pain? WRONG answer.

I knew better, and even though I succumbed to that mentality once in a while whether it be physically or mentally, I reminded myself that looking in the mirror every day and seeing what I liked helped my self esteem, and we all know that self-esteem takes a hit when dealing with chronic symptoms. That was my start, my goal each day...get out of bed, get dressed, maybe not be AS glamorous, but dang it all, keep fighting to care about myself!

I admire that you have hope. Keeping hope alive for a cure is awesome, but in the mean time waiting for a cure may mean what beautiful life you have in front of you may be wasting away. Fisbo, what do you think might be one small step in the right direction for you to feel better physically, emotionally or behaviorally? Might it be setting a small goal like putting on a piece of jewelry each day? Might it be wearing a little lipstick? What do you think might help you feel a little better about yourself?

I have no idea but I did notice it myself I think it must be to do with the site not my smart phone. Not to worry ignore those numbers. More importantly did you understand the messages. I hope I don't come across as being too self absorbed. I certainly am not but wish I didn't get so panicky as I am at the moment.

Just being normal would be helpful. My nerves are bad unfortunately I do suffer with chronic anxiety so it has a lot to do with not being able to cope and I worry about my partner who suffers with emphysema - an obvious concern.

I understand completely. My husband is 18 years older and at 76 needs be more, and my PN wasn’t in the plan. I was instantly disabled from working at age 52. I used Covid isolation and cancer treatment & recovery as grooming & vanity excuses. Then I started noticing myself more in the mirror, and cringed when I saw pictures of me posted by friends on social media. It made me circle back to my concern for my husband and helping care for him. If not for myself (which is most important), can’t I try to make him feel better by looking better myself? I started by swapping t-shirts with better fitting non t-shirts. In the past few months I started back with eye makeup - just shadow and mascara. It’s a challenge not to poke my eyes out since neuropathy rules my hands too, but I had forgotten how it accentuates my beautiful blue eyes! Now, I failed at putting on earrings, but that’s ok, I don’t need them. I just can’t tell you how much better I feel about myself just after changing shirts and livening up my eyes. I hope to hear you can get an ego boost too. Hugs!!!!

Thank you for your responses. Looking at you is like looking at me my partner is 17 years my senior. I am 65 with PN in my feet and lower legs. It is difficult to be vain in this state. I fully understand where you come from in what you say. I was very taken up with my appearance but no longer feel the need. I care for my partner deeply and worry for his health as well as my own. It's a tall order to have this mess I feel we are in. Despite that we have to move as much as we can even if it's little steps. I did a like if ironing yesterday and felt goid. This morning I was very anxious and shaky because when I start to think I shudder to think about what the future actually holds......

There are great mentors here that I’ve learned a lot from to help with positive thinking. Not to exclude anyone, but @artscaping and Rachel have some non-pill therapies and exercises to help cope. Bottom line is we can’t help our partners if we don’t do our best to help ourselves as much as we can. Send me a message any time you want to chat. I’m not always fast responding, but I try.

I just have to jump into this discussion. Right now I am making preparations for a black-tie wedding in NYC. It has been delayed for two years because of the pandemic. Guess what? My condition has changed a lot in two years too! I’m actually feeling dread and anxiety about two events that require formalwear, with Spanx and elegant footwear! I’m returning my 3rd pair of shoes, and I just cut the elastic gripper legs off the shape wear! Trying to look fun and elegant, while minimizing my suffering, is a real effort! I’m making light of the situation, but I really don’t want to be the grandma in orthopedic shoes at my age. Balancing the reality of living with SFN against the desire to appear lighthearted is tough. Wish me luck in my $160 dress shoes!

You GO girl! This is inspiring, Debbie.
Small goals = small wins

@fisbo For many years I did myself a disservice by comparing to others and wishing to be "normal". Worrying so much about what I could no longer do and how it affected my job, husband, and family, that I totally overlooked what I could do and what I did have left. Recalibrating takes time, patience and work. It takes the mourning process of saying goodbye to yesterday and hello to today. Focusing on what is left in life sure does allow for us to make the most of what we have, while we have it. It's the old glass half full concept. Yes, easier said than done, but with effort, reminders and time, you will get there. Small steps one hour, one moment, one day at a time. And most importantly, allow yourself grace along the way.

Here are some tools that continue to help me with anxiety and coping:

1. Journal - write down anxious feelings in order to get them out of your mind and on to paper.

2. List biggest fears and the worse that could happen - this helps you confront your worries and release what you may have no control over.

3. Positive self-talk - remind yourself that you've got this. You are a strong, beautiful human being that's doing the best you can.

4. Deep breathing - practice dropping your shoulders and relaxing your body, then slowly breath in through your nose for 4 seconds while inflating your belly like a balloon. Then slowly breath out through your nose for 4 seconds while your belly deflates. Repeat often throughout the day and not just as needed.

5. Turning negatives into positives - replace negative thoughts with a positive thought.

6. So what, your what ifs - don't get caught up in saying what if.

7. Keep a gratitude journal - write down daily what you are grateful and thankful for. It may help if you recognize the good that you have and see it in print as a reminder.

8. Happy distraction - comedy, music, old photos, puzzles, a hobby.

9. Self care is not selfish - take a shower, get dressed, put on lipstick, wear cologne or perfume, wear your favorite piece of jewelry.

These are just some suggestions to help. Have you tried implementing any of these tools before? Perhaps you and your husband can try some of them together. 😊