CIDP and Me - Goodbye/Hello

Time for ye olde update around here... Things continue along as usual with a few changes thrown in to keep me on my (figurative) toes. I'm still really struggling with fatigue and trying to find a balance between rest and activity. No one is overly concerned about it - they just tell me to take it easy when I need to and to stop trying to do everything at once (you'd think they would know me better by now;). So I am trying to be more aware of my limits and am trying to pack a little less into each day.

That said, I have made some good progress over the past few weeks that I am happy to share here. I am cleared to go for short walks at home. I still have not braved the mountains that span my doorways but am getting good at walking the length of the living room and bedroom. I'm pretty sure I could manage the thresholds, just need to try it once...

I have also started doing some exercises while standing at the counter. I hold the counter for balance and march in place or kick my leg out to the side. I am also trying to improve my balance by holding on with only 1 hand then, for the tiniest millisecond, no hands. No hands really doesn't work yet. But it will.

Finally, last week I managed to climb 2 'stairs' in the parallel bars at physio! This is pretty awesome as I was really not sure it would work out. So, as long as every staircase I encounter has solid rails on both sides (3 feet or so apart), I should be OK. Oh yes, there can also only be 2 steps... OK, I'm not ready for the real world of stairs, but it's a start.

There you have it - Stamina, Balance, Stairs - the three pillars of my  recovery program at the moment.

I do have some sad news. I had to say goodbye to my most fantastic physiotherapist last week. She was covering a maternity leave and the regular person returned this week. I made so much progress with her and enjoyed working with her so much that this is proving to be a difficult transition for me. I met my new physiotherapist today and she seems very nice and competent. We are getting to know each other and will do a full assessment on Thursday before coming up with a plan. I'm sure it will be fine and that I will continue to improve. Who knows, a new perspective may lead to new improvements:)

Here is a pic of me at the counter. I know, I never post pics and really haven't taken too many over the past year. This is not me at my most flattering, but hey, why not, it's still me (and I love my nerdy Dracula t-shirt). I call this "Look Ma, One Hand."

Ciao ciao.

CIDP and Me - Kaboom

There is a silent, ticking time bomb living inside me that I forget about from time to time. If I behave myself and am careful, I can avoid setting it off. However, if I forget and am careless - KABOOM! What is this silent, stealthy rogue? Fatigue. Chronic BS fatigue. The kind of fatigue that smacks you like a bus out of the blue (or perhaps when you should  know better). The kind of fatigue that no nap or good sleep can touch. The kind of fatigue that takes its sweet  time leaving and settles in like an unwanted house guest - draining you of resources and never leaving you alone. It will eventually move on, but it will do so on its own terms.

I stumbled on this IED this week because I did 'too much'. Apparently. 18 months ago I would have considered my week gloriously relaxing and quiet. Half days at 'the office' (um, hospital), a couple lunches, some shopping, a retirement party and choir. Pretty good. Pretty laid back. HA! Nay nay says the silent assassin inside.

The trouble began on Tuesday. I had IVIG and physio in the morning then went out for lunch. We took our time with it as I had several hours to kill before attending a retirement party. At 2:30 I was dropped off at Scott's office and we went and hung out with a friend until the party started at 3:30. At this point I had already been up and out of the house for longer than I had been in a very long time. I was feeling pretty good though, so off we went. It was great to see everyone and get caught up a bit. I had a good time and we stayed an hour or so. By the end I was wiped - stick a fork in me, I'm done - wiped. We drove home and I was a useless human being for the rest of the evening. By 8:30 Barney and I were passed out on the couch. At 9 Scott sent me to bed.

I woke up feeling reasonably perky on Wed and went off to IVIG bright and early. I had my usual  Wednesday lunch date set up along with plans to hit the mall and find me some new pants. This seemed like a reasonable and non-taxing thing to do. It turns out that trying on pants in a change room while in a wheelchair is exhausting. Who knew? Apparently it is also tiring to wheel oneself around the full length of the mall (my friend was more than willing to push me, but I am a stubborn person). By the end I decided to buy first, try on later and return if necessary. I got home at 4:30, marking the second longest day in recorded memory. I was not quite as tired on Wednesday night. I was even able to make dinner! But I did crash early and hard.

Thursday was not quite as insane. I had the afternoon off between IVIG/physio and choir and I was a good girl and had a nap. Even so, my little bomb went off about an hour into rehearsal. I was mouthing my words and going through the motions for the second half and have a vague memory of the ride home. Of course, when I got home I could not fall asleep. Yay.

Friday marked the end. I had no plans after my appointments. We came home and pretty much  moved into the recliners. I wasn't able to nap for some reason but just sitting still was very helpful. I went to bed at 9:30 and slept for 13 hours. I feel much more 'normal' today.

The lesson - I am not up to full days of events. Even if those events are social and laid back. My normal practice of no more than one extra-curricular activity a day is clearly the way to go. It's frustrating because when I am rested, I feel like I should be able to do more. But it just isn't worth it.

OK, enough about the fatigue, I have a few other things to share this week.

Firstly, I made some good progress at physio this week. I am now able to do two laps of the room using the walker without assistance and without the safety blanket of my chair following me. I was previously doing two laps with a break in between each and a physiotherapist holding my belt. This is good. Our current focus is to build up stamina, so I think I will get to know that loop very well. I have also been cleared to use the walker for short distances at home.

Secondly, I would like to share a quick observation/lesson from cooking in a wheelchair.  Watch out for spattering oil. I was cooking chicken thighs on Wednesday night and discovered that my head was level with the sputtering oil from the pan. Luckily I was far enough away to notice and prepare myself and escaped unscathed, but it was close. For once I was thankful to be wearing glasses. So while I am thrilled to be able to use the burners, I think I will stick to grilled cheese and leave any bacon cooking to Scott.

Thirdly, a funny tale about trucks. Everyone loves having a friend with a truck. They are so handy to have. However, when you are in a wheelchair and your good friend decides to buy an F150, it is not so good. Of course, I am thrilled for my friend and glad that she finally got her truck (she has wanted one forever). But for me, it is a challenge. Then again, I like challenges. Let me explain...

I get in and out of cars using what is known as a transfer board. This is a 2 foot long board that I place from the seat of my chair over to the car seat and then slide my butt across. Now, when I pulled up to the F150 it was quickly apparent that this system would not work. The distance between my chair and the passenger seat was more than 2 feet! It would also be impossible to use my walker to stand and transfer as the seat is way higher from the ground than my butt and I am certainly not up to stairs. So what to do?

Conveniently my friend is very strong and works out a lot. I popped on my handy transfer belt (a safety belt with all kinds of loops in it to help people help me stay up) and we came up with a plan. I put my left leg up inside the truck and my right on the runner. On the count of three my friend hoisted me up so that I could grab the 'oh shit' handle. We then combined power to 'monkey' me into the seat. Phew. It was actually not that bad. It is even easier if I start off on a curb, which gives 3 or 4 inches of extra height.

The next challenge is getting out of the truck. For this my friend places my chair perpendicular to the truck with the 'feet' removed. I scoot up to grab the handle and pivot myself around. I then 'plop' myself into the chair with my friend guiding me by holding my belt. Easy peasy, lemon squeezy!

I think I'll have to write a guide to temporary life in a wheelchair when this is over:)

Thanks for reading and have a great week!