CIDP and Me - A Look on the Bright Side

In the spirit of tempering rants with more positive thoughts and updates I am going to share some of the positive things that have happened as a result of CIDP. Really - it hasn't all been a physical, emotional and existential struggle. I'll use a good ole top ten list to illustrate what I mean (maybe if I get good enough I can write for Buzfeed  when I grow up;)).

Here it is...

Ten Things That Don't Suck About Having CIDP:

1. Quality Time with Scott and Barney. It is nice to be out of the rat race (at least for now) and able to really get to spend time together. We can't do all the things we used to (hiking, beaches, etc) but we do still have a good time and a lot of laughs. I sure did pick the right person and dog for me (mushy, I know) and this experience has just brought us even closer together.

2. Weight Loss. I've mentioned this before and wont dwell on it too much but, for me at least, this has been an unexpected and welcome side effect. I was warned about weight gain and moonfaced puffiness when I started taking Prednisone but (fingers crossed) have not experienced any of it. Like so many of us I struggle with my weight and have a closet full of an array of sizes. I was working hard to lose weight when all this started and am thrilled that it continued. I hope it isn't all muscle atrophy and not just a result of poor health. I assure you that I continue to eat well and substantially. I did get the increased appetite to go with Prednisone after all (or maybe it is simply the joy of eating non-hospital food again).

3. Time for Reading. To paraphrase an old Twilight Zone episode: 'There is Time Now." And, unlike the poor guy in the episode, my glasses are in one piece and I am able to make the most of it. I have read a little of everything over the past year. There were times that my brain was unable to handle anything heavier than an article in Canadian Living or a fluffy bit of chic lit. But there have also been times where I have delved into non fiction verging on academic. I have read mysteries, thrillers, epic fantasy series, articles about physiology and neurology, textbooks on coding Java, biographies, analyses of current events, and literary classics that have been on my 'I'll read one day' list for years. It's great. I typically have several on the go at a time so I have something to turn to whatever my mood may be. My current favourite is Moby Dick - seriously, I'm reading it for the first time and it's a lot of fun.


4. 'Spring Cleaning' can happen at anytime with no big rush to it. I am really enjoying taking a room (or part of a room) a day (or week) to sort through and really clean. Little by little I am decluttering and reorganizing the main floor of the house. I've filled bags and boxes for Value Village - next mission will be to transport said bags and boxes - purging our shelves and drawers of ancient t-shirts and books that we would never read. I have, after years of procrastination, gone through my spice cupboard and replaced unidentifiable and dusty herbs and spices with fresh in new and labelled (what a concept!) jars. All of this is deeply and magically satisfying.

5. Daily Cleaning. Yes, daily. I have become one of those housewives who dusts before you can actually see any dust. I am also deeply entangled in the epic, age-old struggle of Man Vs Beast (or, in this case, Woman Vs Dog Hair). Every morning I wake to see tufts of grey hair (I know, he is black and tan but somehow the hair that falls is always grey) happily dancing around in the wake of the fan. It tries to elude me by hiding in nooks and crannies and under furniture but it is no match for my trusty broom and dustpan. Actually, that is a lie. The broom and dustpan are rarely entirely victorious. I am often tempted by the lure of the miraculous modern convenience and environmental travesty that is the Swiffer and it's cousin the Swiffer Wet Jet, but so far have resisted. Instead I wage my battle old school with a feather duster, cloth and broom. On rare occasions I will bring out the heavy artillery (vacuum) but I have not yet mastered the art of wielding such a double-handed weapon whilst maneuvering a wheelchair. The same can be said for mopping - a tricky and messy business, indeed. The result is a relatively tidy house with precious hair-free moments to enjoy each day. This makes me happy.

6. Time for Listening to Music. I quickly realized that CBC Radio just isn't what it used to be and that my brain cannot handle much of the drivel that is broadcast each day. With a few age old exceptions (As it Happens, Sunday Edition, The Current, This is That) I find the programming trite and annoying, so most days, I turn off the radio and turn to playlists, online radio or my own collections. A little Bossa Nova to go with cleaning - nothing makes me smile quite like Bossa Nova - you can't be grumpy with that on. A little choral music for reading or my own little karaoke. I had to sit out from choir this year and I really missed it. I will go back in September, but until then I sing along with the best in the world:). A little throwback 90s music does the trick if I am feeling angsty or nostalgic. And one can never go wrong with an afternoon of classic jazz. You get the idea. The likes of Neil Young and Bob Dylan find their way in there too, as does Paul Simon (Graceland is a good accompaniment to my exercise routine). I'm not really branching out into new territory and am definitely out of touch with current trends, but that's OK.

7. Netflix. Ah Netflix, what did we do without you? Even though you are cruel and took away my coveted vpn US, UK, and German access, I remain your faithful servant. We got rid of cable years ago and tend to rely on Netflix for our shows and movies. It took months of binges but I am pretty much caught up on all the shows that interest me (and a few nostalgic re-watched series). I do wish there was a 'random' play option though. Imagine you could add shows you like to a list and then just ask for a random episode to come on - not all shows need to be binged or watched sequentially. I try not to spend too much time watching these days, but I would have been lost without Netflix in the winter and spring when it was dark and I had no energy.

8. Lunch. I've kind of become a 'lady who lunches.' I have a weekly lunch date with one friend and can generally find another to accompany me on other days. I enjoy this as it gets me out of the house for something other than appointments and gives me much needed social interaction. Not to mention that I like food, especially when I don't have to make it or clean up. I'm getting to know what restaurants are accessible (or accessible enough) and try to vary it as much as possible. My energy level is best midday so a lunch date is often better than dinner (or supper for my maritimer readers). I often follow these with a long afternoon nap, which is another nice thing I get to do guilt-free.

9. Writing. It may be a bit narcissistic but I am really enjoying writing this blog. It is fun to try and express what I am going through and I have reconnected with so many people as a result. Thank you for humouring me and reading! I'm also writing personal journals and thoughts on a fairly regular basis. It is therapeutic and fun. I always enjoyed writing but haven't allowed myself much time for it in my adult life. I'm not working on my great novel or memoir or anything like that, but it sure is a great outlet.

10. Me. I have learned a lot about myself through this experience. I have had time for deep reflection and thought and also time to step back and observe. I have a better understanding of what matters to me and what I can throw away. It turns out that I like myself, which is a bonus:) I don't consider myself especially strong or tenacious but I know I can handle whatever comes my way and remain fairly positive and optimistic about it. I know that I am stubborn and that is a good thing that has helped me get through a lot of crap. I also know when I need to let go a little and look to those around me for support and a shoulder to cry on. We don't take enough time these days to understand ourselves and I am grateful to have the opportunity to do so, even if the circumstances are less than desirable. OK, I'll stop with the new age, self-help gobbelty goop now.

There you have it - a positive outlook for a Sunday where the sun keeps beating out the storms (trying to be literary there but really, it was stormy when I started writing this and is now the sky is blue).

Cheers and have a great week!