Figuring Out The New Me

I realized I had a brief hiatus there with blogging.  When I tried to figure out why, all I came up with was that I just didn’t feel like writing.  Things tend to come in brief bursts of interest for me – writing, making jewelry, cooking, reading.  I’ll do it for a few days, a few weeks, then take a rest and come back to it later, refreshed.

It’s been a little over 8 months since diagnosis.  Reflecting over the last several months, I feel pretty positive.  I think I’m learning to adjust to the different lifestyle that MS requires.  I make appointments for as early in the morning as I can – I don’t have any issues getting out of bed, and I seem to have most of my energy between 7:30am and 10:30am.  I’ve learned that I need at least a day between chores and appointments.  I can do laundry one day, but the next day I should do nothing.  Then the third day, I can go to the grocery store.  I try to take a nap some time between 1:00pm and 5:00pm; sometimes they’re an hour of rest, not actual sleep, sometimes I crash for four hours straight.

Mango and Watermelon-Cucumber Vodka

I’ve learned to try to stay cool.  I’m enjoying summer the way I always have – indoors.  I definitely notice a lot more numbness when I’m hot… there are days my right pinky toe is entirely numb.  Most days this summer, my right foot is “asleep”.  Now I have a medical excuse to not enjoy the outside heat!  I’ll just self-medicate inside with my tropical summer drinks.  🙂

I’m still testing and learning my energy limits.  I had a friend who was out of town and asked if I could feed her dogs twice a day for 9 days.  I’d done it for 2-3 days for her before without much issue.  I thought it through, as far as my MS energy goes, and thought I’d be fine.  I get up in the morning, drop the husband off at work, head to the friend’s house five miles outside of town, feed the dogs and let them run around the property while I read for a little bit, go home and nap, pick husband up in evening and head over with him, feed the dogs, let them run for 10-15 minutes, and go home.

Bear dragged garbage all over.

Huge mistake.  By day three, I was exhausted… just wiped out.  I’d come home and feel like I was neglecting my house, so I’d do some dishes.  Eat some lunch.  Pay bills, balance the budget, argue with mail-order pharmacies on the phone, argue with the insurance company on the phone… never get a nap in.  The second-to-last day, a bear got into the garbage and spread it all over the lawn.  Picking up that nasty, two-week old garbage was the grossest thing I’ve ever done (I had latex gloves!)  But just picking it all up out of the yard, I thought I was gonna pass out.  Light-headed, knees were all quivery.  And the bitch of it all is that they have a bear-proof box the garbage is supposed to be in!  The boyfriend just didn’t put it in there before they left and we were none the wiser.

Needless to say, doing even minimal activity 9 days straight without a break is not something I can do… three days was enough to wipe me out.  Definitely need to keep one day breaks in between pretty much any days with activity.  So that’s taking some getting used to.

My second round of MRIs were good.  The neurologist said the lesions looked slightly smaller… less “active”.  Hopefully a sign that the Rebif is working.  Possibly some small, new ones, but she couldn’t tell 100%.

I’ll be starting physical therapy next month… kind of/sort of MS related.  Since I’m home and not very active most days, I was trying to keep somewhat in shape (or as much as being in shape is for me) by doing exercises at home – crunches, squats, yoga stretching, hand weights.  When I saw the neurologist last month though, and told her I was suffering lower back issues, she asked me to show her how I do my exercises, claiming that most people do not do crunches right and end up hurting their back more than helping.  And… of course, I was doing mine wrong.  She tried getting me to use certain core muscles and I just could not make them work the way she wanted them to, hahah.  So she recommended PT to give me some training on how to do my exercising correctly.  I haven’t done anything for a month now, and my body has definitely noticed it.  Picking up that bear’s garbage mess strained my hamstrings so much that the whole next day, both of them ached and kept threatening to charlie-horse on me!

I’ve acquired a new tablet and found that colouring apps are extremely meditative and calming for me.  It’s also been nice for keeping notes on symptoms I’ve been experiencing.  The neurologist and physician appointments are only every 3 months and my memory is so non-existent, I need to be able to write things down as they’re happening because by the next day, I’ll have forgotten.  I’ve always carried my Kindle with  me wherever I go for reading, and the tablet serves that purpose now, so it’s always with me, ready for reading, meditative colouring, calendar scheduling, and note keeping.  I love it.

So much pretty hair!!!

Speaking of colouring… I have thoroughly been enjoying the freedom I have to play with my hair.  It seriously brings me pure happiness to walk by a mirror and think, My Pretty Pony ain’t got nuthin’ on me!  The colour just tickles me to no end.  It’s always felt right to have funky hair colours… I missed it so much when I couldn’t do it.  (I’m also seriously fortunate that my husband was willing to learn how to do it for me, because there’s no way I can hold my arms up long enough to colour my hair anymore… they wimp out too fast.)

Talking with some people about having MS or the changes it’s brought in life (like not being able to work), folks tend to give pity and sympathy.  And it’s genuine, you can totally tell, and I appreciate it.  But I really don’t feel I deserve it.  It is unfortunate that I have MS, sure.  And yes, it’s changed our lives a great deal, no doubt.  But I am constantly reminding myself that it’s not all that bad.  There are so many folks out there whose health and lives have changed much more severely than mine, not just with MS but any number of illnesses!  I’m really very lucky and grateful for all I still have and that I can still do.  I do think it’s taught both me and my husband to appreciate the all the little things.