Expressions of Support

There was an ambulance parked next door yesterday, one of my neighbors also suffering from a chronic illness taken to hospital. My friend came home, saw it leave and immediately checked on me. I was having a sound sleep and didn't even hear the knock.

We just talked, and it makes me feel good to know people are checking in on me.

My daughter also called, and confirmed plans for next Sunday, the day of the MS Walk in town.

I don't think the kids realize what it means to me that they do this every year. I love the family photo taken at the end of the walk, love to see the kids and their families join together to support a good cause.

It's as if, on this one day, they give recognition, more than ever, to the issues I live with, and confirm their love and support.

Last year we all wore neon green T-shirts, this year we're adding hats. Every year something new, something to look forward to.

Thanks guys, it means the world to me.

Monday, Monday

I'm so glad to see the end of this last week. Today began better, I could put the cane back by the door and was walking about unassisted. Even got the shower done with minimal difficulty, and the hot water felt so good.

Today is garbage day. I gathered my bags of recycling and waste and carried everything out to the curb. It was raining and the sky was overcast, not a welcome spring feeling at all.

The problem with shopping and being busy is that I don't have the energy to prepare meals, and a lot of the fruit and vegetables spoil before I can get them eaten. So this garbage day, I have some cleaning out of the fridge to do. I may switch to frozen veggies, just so I'm not wasting the fresh.

I need to feel productive, in a creative way, and have a new project in mind. I have a beginning, but need to sit down for some of the finer details. This is where my set up becomes frustrating, the lack of space and the inability to leave everything out and within reach.

I do mixed media collage, and have a hoard of paper to use in my work. It would be nice if I could just sort through one storage bin for inspiration, but I have bits and pieces in too many places. The fine work I'll do with a temporary table set up by my chair, not the greatest as my back will be sore after.

What I do for my art.

A Wretched Week

If nothing else, this wek has taught me that I can no longer manage three days of activity, not in a row at least.

Monday was shopping and out to get my car. Tuesday was more shopping (taking advantage of being in another town) and the Pain Workshop. Wednesday was another, longer trip out of town to have my x-ray and ultrasound. We hit a blinding snowstorm half way there, and turned around.

I was out Tuesday evening, and let me tell you the meeting chairs and the seats at the arena were harsh. I was in a great deal of pain, all night, and managed about 3 hours of sleep. It was easy to make the decision to reschedule my tests. We had lunch out instead and I came home.

The next couple of days were "crash" days. I accomplished nothing, not with the fatigue and brain fog. It was so bad I couldn't keep track of the days, and felt quite out of it.

When I got up this morning, I wanted a shower, and maybe to get out of the house, pretend I was normal and alive.

I got up to the bathroom, and barely made it back to bed. The pain in my back was horrible, the shoulder as bad, and then there's the knee. I had to use the cane, and I never use the cane in the house.  After a pain pill and a rest on the heating pad, I tried again, and could barely move, so it was back to bed.

The frustration proved too much, and I found myself crying with the pain. As I have lived with pain all my adult life, in various degrees, I found this demoralizing, and hoped it was not a sign of things to come.

It was after noon by the time I was able to get up, and I needed to get something to eat, to take more pills.

For all its  rough beginning, the pain eased and I was able to do a few things,as long as I could sit to do them, and am now heading back to bed.

Could I have avoided this day if I had not pushed myself for those three days? We'll see what happens this week, workshop on Tuesday, dentist appointment on Thursday. I'll watch, and see if scheduling my activities with more rest in between avoids a day like today.

Start and Restart

When I pulled the covers back early this morning, I got a sharp pain in my right shoulder, this new pain that is the reason for the x-rays and ultrasound booked for last week but cancelled because of the freak snow storm.

I stood and had to wait a second, to see what level of back pain I would have, but managed to make it to the bathroom, and as it was not a good start, made my way back to bed to lie on the heating pad.

I tried to read, but kept dozing off, so gave up and put the book aside. Why then, when I close my eyes do I not sleep?

Up for the second time, pain all over. I apply the 'Motion Medicine" to my back, right shoulder, left knee and left lower leg. I have more pills to take, with food, so prepare my yogurt with some fresh strawberries and make a coffee to go with the breakfast bar. Times like this I love my Kuerig coffee maker, it is so easy and there's no real cleanup.

Now I've been sitting in my recliner, checking E-mail, Facebook and, of course, my blogs and the pain has eased, all but the shoulder. Everything I do is with the elbow tucked close to my body, to limit the movement, but it doesn't seem to matter.

I hate this feeling, wanting to go places and do things, but hampered by the pain. It's barely noon and I can feel a nap in my future, maybe this time when I lie down I'll be able to read, and keep my mind occupied. There's still a lot of the day ahead.

Wondering

For years I have followed the blog about MS that I found on Ask About. The information was excellent, and often presented links to timely articles, like dealing with hot weather, that I shared in my blog.

I noticed that the e-mails from this site were no longer coming, and at first I thought the writer was just taking a break. But quite a bit of time has gone by, and today I received an e-mail, but from a different writer, this time from a doctor.

Te previous blog was written by a woman with a doctorate, so obviously she was very intelligent, very well educated, but more to the point, she had MS and all her articles came from first hand experience.

She is married, with a young family, and had been writing her personal experiences with some of the new drug treatments.

I don't know what happened that she is no longer writing the blog, but can only assume her condition has changed and she could no longer manage it.

I hope it's a case of prioritizing, that some things needed to be eliminated from her life to allow her to give her attention to the things that matter most, like family.

I miss her honesty and insight into this disease, and wish her the best.

Too Busy, Too tired

The workshop on living with chronic pain is getting more interesting. We're all more comfortable within the group, so maybe listen more, sympathize? empathize?

I had a nice talk with two of the women, old nurses like me, and found a kindred spirit in a couple of artists and writers. And to think, two weeks ago we were just a group of strangers, in pain.

Out on Monday, and out again yesterday, I was over tired last night and could not sleep. I had to get up and going, to pick my friend up at 11 am to go out of town for my appointment (x-ray and ultrasound).

We were about 15 K north of the lake and hit a terrible snow storm. I couldn't see the road ahead and the sky looked dark and threatening. If it was that bad, and we had a ways more to travel north, what would it be like coming home?

I made an executive decision to turn around. April and the snow this bad, I shake my head. I knew it wouldn't last, melting as it hit the pavement, but I don't like when it comes down so heavy I can't see the road ahead.

Turns out the receptionist at the doctor's office wrote the 6th on my appointment card, when my tests were booked for tomorrow, the 7th. I don't know what the weatherman called for tomorrow, but I know I don't have the energy to have another busy day. I rescheduled and can't believe weather could possibly be an issue.

We had lunch out, and by the time I got home, I was in a great deal of back pain. Laid down on the heating pad and slept for hours, through the dinner hour. When I woke I couldn't seem to get myself moving, brain fog something terrible. Made do with a sandwich for dinner, and now, after a few hours up, am ready for bed.

Just can't do these busy days, one after another, but circumstances don't always allow for that days of rest. I don't care, I'm taking one tomorrow.

Pushing on, Week #2

Last week, day 2 of the workshop living better with chronic pain, was cancelled, but we are back on track today.

I put off doing the reading for the workshop, my homework. Somehow I feel I should listen to the advice I gave my granddaughter about leaving things to the last minute.

My problem is my inability to concentrate, so as much as I want to read the material, I can't seem to retain any of what I read.

I did manage the recommended chapters, though I get a bad grade for completing the action plan. But, I did make a final effort, combined my objective to walk, with a trip to the laundry. I have to say, that is the one downfall to living here, that walk across to the main building to do laundry.

When I go, I stay for the duration. I can't manage to walk over, put the load in and go back and forth to change it to the dryer and the final visit to fluff and fold.

It was late by the time I went to the laundry, and I watched the hockey game in the common room until I was done. But it had been a busy day and I was in such pain by the time I got home, I left the laundry on the basket on the walker and went to bed.

Still tired from yesterday, though I did get the laundry put away, finally.

I'll need a few days to rest after Wednesday. Tomorrow is my shoulder x-ray and ultrasound. I have to travel out of town, downfall to going where my doctor is, but am combining the day with lunch out with a friend.

I feel like I've done nothing so far for the day, and can hardly keep my eyes open. I want a nap, but need to push on, get dressed and out the door. My new friends at the workshop should be sympathetic, we're all in the same boat on this.