I like to read mostly and take pictures with my camera. I also am addicted to the website reddit.com lol. what do you guys do when your not flaring but you cannot walk far?? it is so hard to find things to do, and when i do hang out with friends, i cannot be with them for long because of the flaring .how do you guys cope?
I only have it in my toes, so I concentrate on art and craft projects, along with reading and crosswords or cryptograms. I paint and make jewelry. Netflix is good too, if you like watching serials but often find "nothing to watch" on TV.
I used to be a social worker and love art so I began a Page on Facebook. I am hoping it will help me regain some independence and alternative treatments not covered by insurance :)
I am in bed most of the time, but I watch history shows and documentaries, I work on my family tree on Ancestry.com, I talk to friends on FB and in the Ben's Friends groups. This is what I do if I have spare time and energy for fun stuff.
If I'm having a bad day I sleep a lot. Also, good or bad days, much of the time I'm on the phone making and rescheduling doctor appointments for myself, my mom, my hubby or my kids. Or filling out paperwork for doctors or insurance companies, etc. There is never an end to paperwork, LOL!
I work 40 hrs Mon-Fri. When I get home, I run my FSM (frequency specific microcurrent) machine for about four hours until I go to bed. In the mornings, I wake up about 20 minutes early to do foot/calf exercises before I get out of bed. This seems to help with the circulation a bit so I don’t immediately flare when my feet hit the floor. There are times when they still do, but it seems to have gotten somewhat better recently. I will usually only plan one thing on the weekend (ie. lunch with a friend) so I can get much needed rest the remainder of the weekend.
I garden after dark. I discovered that besides getting cooler when the sun goes down, the grass gets covered with dew or condensation. It feels nice and soothing to walk barefoot on the cool wet grass. If I should start to flare, I can spray cold water from the hose on my feet. And the neighbors can’t see me being weird, lol. Your eyes get used to the dark after a while or I can use my head lamp.
Interesting that you use microcurrent.. I've been using a TENS/EMS unit for pain managment and improved circulation for years - and just purchased and Intensity Select Combo TENS/EMS/IF/Microcurrent unit. Am planning on experimenting with the different modes to see what works the best. Can you tell us what settings (i.e. frequency pulse width) you use?
An article on the "Nonpharmacologic Treatment of Neuropathic Pain Using Frequency Specific Microcurrent" by Carolyn McMakin suggests frequencies of 40 Hz on one channel and 396 Hz on the other channel have reduced neuropathic pain.468-MicrocurrentforNeuropathicPain.pdf (184 KB)
I went to an advanced FSM practitioner in my city for several months before I had a home unit. She uploads specific programs onto the unit. Some examples are peripheral neuropathy, small fiber neuropathy and many programs written specifically for me (ie. Foot trauma, brain stem and sympathetic nervous system, etc.) I couldn’t even begin to tell you what frequencies to use or confirm that your unit is the same as my FSM unit. Here is the website that might help: http://www.frequencyspecific.com/faq.php#hist. You could call or locate a practioner near you who could give you more information. Hope this helps some!
I am new to this forum and am trying to jump in. I am coming up to 11 months since this all happened to me and spent from June till October last year on sick leave. Then I started unemployment and was supposed to be looking for work. But my problem is I can no longer work at my old job. I was a teacher and cannot lecture for 5 hours a day. I can barley walk and my unemployment runs out in 2 weeks. I have applied for disability now. I do not know how some of you have managed this for years and years. I feel like I am going insane and it has only been a year.
So, as for the question. I sleep till late morning because of side effects. I usually flare every day from noon till around 7pm. Evenings are my very best around 9pm. So I am generally up late. I make jewelry and read. I like to meditate. I find it helps me with the pain. I seldom go out anymore- find even visiting with friends too big of a chore and the pain it seems it is not worth it. I have a vintage and handmade store online and spend a lot of time doing that as I can sit. I like to talk on the phone to my sister who is also recovering from a serious brain injury.
Thanks for all the wonderful posts and information available to help us each day. It is so hard and yet we have so much to be thankful for. I try to be sunny side up but some days it is all consuming and I find my friends and family are tired of hearing me say " I need new feet". lol.