Paresthesia, abnormal sensations

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!!!!

Jump to this post

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.

Jump to this post

@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. 😊

Jump to this post

Thank you for this I guess I am just a weak person compared to what you say. Agreed I should try and do the things you suggest. My fears are justified in that my partner has emphysema and that in itself is a great concern. My fears of being alone are terrifying and not only that I love him deeply. My life is complicated and messy. I will try some of those things you mention. The pain is extraordinary and it stops me from operating in the normal way.

Jump to this post

I know you are struggling and I'm so sorry for that. Fear of loss is a terrible feeling to have.

I'm wondering if you have looked at conversations in our Caregivers thread? There are many different topics within that may help connect you with members having the same feelings and concerns you have.
Caregivers -
https://connect.mayoclinic.org/group/caregivers/
Give it a try.
Wishing you a happy day! 😊

Jump to this post

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.

Jump to this post

Es el día a día lo que cuenta lo que vale. Pensar en tiempo más lejanos creo que no nos favorece. Tal vez de esa manera veamos todo demasiado negro. Pero si
vamos a paso a paso nos damos cuenta qué el día de hoy no fue peor que el de ayer. Sí miro muy para atrás tal vez piense qué hace 10 años estaba mejor, pero en realidad no lo sé con seguridad. Tal vez me movía de manera más segura y con más rapidez , pero no tanto cómo para entristecer. Creo que me importa el hoy. Me voy adaptando.Un abrazo.

Jump to this post

Thank you so very much for that

Jump to this post

I agree with you Lori Renee...not normal. I can't use it during the day because I hate the way it makes me feel. Bedtime only. Tried and tried again, when I'm desperate for help but all in all, just not for me. Currently I'm trying to manage my body as best I can and sticking with hydro, heat and rest. Sucky way to live. I am trapped in my body and my mind wants to live as normal.

Jump to this post

Racheal….. same here! Hot baths when I reach my cut off point ! I’ve tried everything. I’m up all hours of the night. The fatigue sucks the worse. It’s so over whelming. I just have to lay down. Rest and peace of mind sometimes is the best.

Jump to this post