Hudson Taylor – #AtoZChallenge

I haven’t yet worked out exactly how Hudson Taylor (the band, of course, not the missionary or the wrestler) relate to my having MS, but I’m sure I’ll think of something. I need to shake this month up a little bit.

Hmmmm… Do Hudson Taylor sing about MS? (No.) Do either of them have MS? (Not that they’ve ever mentioned to me.) Support MS awareness of any kind? (Probably not, although they are so nice that I bet they would.)

Meanwhile, I’ve let days go by without posting since I can’t come up with anything to tie in the band, so I guess I’ll just leave you with a gorgeous recording of their new song, “Old Soul.”

P.S. Harry and Alfie, on the incredibly remote chance that you are reading this, please remember that you said you’d come back to Portland in May. And that you’d be headlining. And that you’d bring your whole band. And that I could have two free tickets. Okaythanksbye.

Gabapentin – #AtoZChallenge

Gabapentin was originally developed as an anti-seizure medication for epilepsy, but was also found to help with neuropathy (nerve pain) and dysesthesia (altered sensations, pins-and-needles feeling, tingling). Thank goodness for that! There’s no way I’d be able to get through the day without it.

See, normally our bodies can screen out unimportant sensations of things like clothes or blankets or the brush of a purse against your side as you walk. I mean, it would be pretty weird if you put your clothes on and then felt them against your skin all day, like having to wear a shirt over a badly-sunburned back, wouldn’t it?

Yes; yes, it would.

I really have a problem with dysesthesia on my left side. I don’t feel pointy, sharp pain well enough, and I feel soft, glancing touch way too well. Without gabapentin, I wouldn’t be able to leave the house, because I wouldn’t be able to wear clothes without feeling like I was being slowly irritated to death. I wouldn’t be able to sleep in the same bed as my husband for fear of him accidentally brushing up against me. Walking would be particularly difficult, as my foot would freak out every time it hit the ground. Gabapentin had helped tremendously; it’s not perfect, but it turns the neuropathic pain from a 10 down to about a 4.

I just have to remember to take it on time; missing doses really does a number on me. I have a sectioned pill box and I’ve set alarm reminders on my phone, but still I mess up the timing, and I usually don’t know I’ve done it until I feel the nerve pain start to creep back in.

Fatigue – #AtoZChallenge

This is the perfect day to talk about fatigue! You see, Walk MS was two days ago, and it was awesome. Family, friends, love, support — it’s my favorite day of the year, and I float through it on a wave of adrenaline. But every year, I go home from the Walk and pretty much collapse for days.

Fatigue has been the weirdest and most frustrating symptom of all. Some days, I will be feeling absolutely fabulous– energetic, motivated, happy — and then, after doing maybe one task, I crash. Other days, I wake up and think about getting some food or using the bathroom, but I’d have to lift my head and move the dog over, and I don’t have the energy to do it.

I have days that I basically live in my bed, days that I crash as soon as I get home from work, days that I need to rest after every little thing I do. Then, out of nowhere, I’ll have some great days.

One thing to note is that sleep doesn’t help the fatigue much (I can have a short nap, a long nap, or a good night’s sleep, and still feel lethargic) but lack of sleep definitely makes it worse. Colds, flu, infections, stress and sleep deprivation all seem to kick my immune system into gear, completely exhaust me, and do a number on my left side.

It’s totally manageable, in its own way.  I mean, it’s just hanging around in bed! What’s not to like?! But there’s a stigma to it. You’re lazy. You aren’t making an effort. All these naps are just making you more tired. You are wasting your life. Does anyone really say those things? I doubt it; they are probably all internal. But apparently those are long-held attitudes in my mind, because those voices guilt-trip me about all the time I spend resting.


Fry – This post could also mention the young, whom I love, who are more than willing to just pop over to the house and visit with me in bed, and who have seen me in my pajamas too many times to count. (Love you guys!)