Pay it Forward

Just when I was feeling low and, well, pretty useless, I had a wonderful Pay It Forward moment.

I was talking to a service representative and mentioned that I was trying to cut my costs as I was facing a drop in my income. She said she knew how I felt as her husband was unable to work and they were down to one salary.

I find people talk to me about personal stuff, must be the old nurse in me is not totally gone. Anyway, her husband has debilitating pain, but has been denied disability. She has a lot to deal with, more than just being total support for the family.

Chronic pain is difficult to live with and changes a person. There are the everyday things that you can’t cope with due to pain, so you tend to withdraw, from family, from friends. At the same time this man had to deal with loss of work/career, and I know how devastating that can be, to your sense of self esteem.

I recommended that she and her husband each start writing a journal, as both are dealing with issues related, but separate. Sometimes you just need to get the anger and the fear out of your head, and writing it out has always helped me clear my mind and see things more clearly.

The one problem with this is what you write can be hurtful if read by someone else. So rather than writing in a notebook, I suggested writing on loose paper, and shredding the results. It’s not something the writer would want to reread, or want anyone else to read, so shredding is for the best. Lord knows, when I moved I found notes that needed shredding badly and if read by others would have caused a great deal of hurt. How you feel in any given moment is not necessarily how you really feel, but could be a reaction to some event. Hence the shredding.

I felt that I was able to give her some understanding of what it’s like living with pain and shared my own experience in applying for disability. I think I gave her some support, at that moment at least, I was a sympathetic ear. Often people can talk to strangers easier than to those closer to the situation.

It was a feel good moment for me, as I felt more like the ‘me’ I used to be, strong, smart and able to offer just the right words of comfort and support. It was a win-win, for sure.

Resisting Change

I know when I posted about the mistake I made, taking a new prescription drug before reading the product summary, I made light of it. Actually, I had a very bad day as a result.

It began with the dizziness which of course, affected my balance. I didn’t feel well and finally called the pharmacist, as I had begun to really worry.

The day went from bad to worst. I was worried about something else that day, unrelated, and was tired as I’d had a busy week, well, a busy week for me. By dinner time I was restless, anxious and had that vague chest pain again.

This was so much like the way I’d felt when I went to the hospital in November, and as that had ended up OK I didn’t want to go back, for nothing. But, I felt so shaky and had this heavy feeling in my chest, I knew I needed help.

It is my good fortune that a friend of mine is a nurse with Telemedicine. I called her, and believe me, whatever that call cost me in long distance charges was well worth it. She talked to me, asked questions about how I was feeling, what I was experiencing physically and advised me to take one of the Ativan tabs that I’d been prescribed from that hospital trip and never taken.

It worked, I calmed down, reassured as she stayed on the line with me, and later I had a good night’s sleep. Crisis, or whatever, passed.

The next day I did some research and found an article about anxiety and MS. As this disease is unpredictable, there is an anxiety that is natural, an expected worry about what course the disease will take. But I know that’s a worry that is in the back of your mind, not something you think about every day until you feel your condition changing.

But there is also an anxiety that comes from lesions in the brain. I suppose these lesions affect the brain the same way that they affect memory and concentration. But anxiety is more of an emotional thing, like depression, and here we get into a whole other area.

Here we get into factors that might be listed under mental health issues, taboo areas so to speak. Now we’re looking at emotions and personality.

I have always been an in-charge person, able to react quickly to situations and remain in control. OK, except for those moments raising teenagers as a single Mom where I lost my cool, but that’s still normal. When talking with my friend, who I’ve known for more than twenty years, she commented that she had never heard me sound so anxious, and she knew me in those teenager years.

The funny thing is, since I’ve been on my disability, and no longer have the stress of the job, I’ve become increasingly anxious. Over the years I’ve been aware of my tendency to worry and fret. I first noticed it with the grandchildren. Worry when the babies cried, when toddlers ran and played and children were in the yard unsupervised.

It was like I forever had that old cliché running in my head about dangers everywhere. “You could’ve poked your eye out!” My kids just told me to calm down, and I set it aside. But I recognized I was not dealing with things as well as I used to. The advantage, or disadvantage, to living alone was that I could worry and no one was aware of my heightened emotional state.

The last few years, especially since the move about eighteen months ago, I have seen my disease progress. The physical changes, the increased fatigue, the use of the walker, and the loss of some fine motor control are obvious.

The brain fog, the inability to concentrate, and the increased memory issues are more difficult to explain to someone who has never experienced such things. I was unable to write because I couldn’t remember details of my story, and this was frustrating, like a slap in the face because writing was one thing that kept me going, filled in the hours of my day.

It’s hard to accept that the basic things that make me...me...are changing. I feel like a stranger at times, to myself. This disease does affect personality, how can any chronic illness not affect how you feel, how you react to things? And when you add in the physical causes, the lesions, it’s even harder to define.

I have a doctor’s appointment coming up, one that will require some serious talk, and some acceptance on my part that I’m no longer able to cope. It’s hard asking for help when you’ve always been the one helping others.

Lesson Learned

I went to the doctor the other day because of pain behind my right ear. I was thinking ear infection as I went through this last October, but the doctor said no. He thought it was a neuritis and prescribed me an NSAID, a nonsteroidal anti-inflammatory drug called Naprosyn.

I am well acquainted with this drug, having taken it for more than 15 years for joint pain. When I became less active because of the MS, I switched to Advil, still an anti-inflammatory, but cheaper and only took it on a needs basis.

But now I take Lasix, a diuretic. I took the Lasix early, and the other later when I sat down with my coffee and yogourt. It was at that time I decided to read the Patient Information Sheet that was given to me for the new prescription.

Wasn’t I surprised to find that Lasix and Naprosyn are contraindicated. In other words, not recommended to be taken at the same time. Oops.

I called the pharmacist to check on it and there shouldn’t be any real problems, but I learned that those few minutes of anxiety could have been avoided if I’d read the information BEFORE taking the drug.

A lesson learned.

Noise Intolerance

I read an interesting article about noise intolerance and decided to share.

The writer makes a point made about facial expressions, one I've experienced many times...the angry face. I remember when I was working and a co-worker said I looked mad all the time. I was very surprised because that had not been my mood. But given that not long after that I went on disability, with cognitive issues, concentrating at work was a major problem and I may have been frowning a lot as I tried to cope.

I agree that when concentrating, because there is too much noise, or too many simultaneous conversations, I tend to squint, and that it may not be a friendly expression. But it gets old, constantly trying to defend yourself, because others are quick to judge.

One of my original symptoms, and what sent me to the doctor, was the loss of feeling on one side of my face and scalp. I have always felt my face was, not frozen exactly, but lacking in some affect since that time.

When people know what the problem is, they might be more understanding, and check the emotional waters, so to speak, and ask, before they just assume you're a bitch.

Read the article, see if it strikes a chord with you.

http://ms.about.com/od/livingwellwithms/fl/Tips-for-Dealing-with-Noise-Intolerance-and-Multiple-Sclerosis.htm?nl=1

Sleep Deprivation

I don’t know why I did it...stayed up most of the night reading. The words were blurring on the page and I knew I was pushing my limits but I never put the book down until I reached the end, and then hoped to sleep.

It helps that I don’t have to worry about schedules. If I stay up late and sleep most of the day, who cares? What does it matter?

I’m not sure if this was a bit of a back lash to my cupcake disaster of the day before, maybe a bit of rebellion on my part that tells me I’m not as peacefully giving in to my disease as I’d thought.

Acceptance is a hard fought battle.

When I woke a few hours later, I wasn’t ready to face the day. I grabbed another book off the bedside table, where there’s quite a stack, and decided to read awhile first.

Uh oh, not going to happen. Double vision and that bright light, something I’ve experienced maybe three times in the last fifteen years. The result of too much stress, too much doing, and not enough sleep.

I put the book down and tried to sleep, or at least rest. When I tried to read later it was the same, so I got up, made my coffee and did little but sit with my feet up and watched television. It soon went away, and I was back to normal, well, my normal at least.

That night I couldn’t sleep, but I was so tired. I think being overtired does not allow the body to effectively sleep. Maybe when there’s an underlying tension that does not allow one to relax.

I know I don’t sleep well, and I’m my own worst enemy. I don’t keep a regular schedule, so my body maybe gets confused. I think I’m in a chronic state of sleep deprivation.

So, for this New Year, my resolution is to work on sleep, and the getting enough of it. I’m going to try, seriously try, to go to bed on a regular schedule, read for a short time, put the book down, and go to sleep. And when I hit that wall during the day, when the fatigue is overwhelming, I’ll lie down, close my eyes and rest, if not sleep, rather than push through it.

I think it will take a while, but I hope that consistently getting effective sleep will make a positive change in my life. Only time will tell.

Another "No Can Do"

As much as I feel I accomplished a lot over the holidays, I feel that there was so much more I wanted to do and didn’t get done. I still have that problem of high expectations.

For many years I was the official family birthday cake maker. I made fancy cakes in the shapes of ponies, guitars, spaceships and even a treasure chest. My cakes, when done from scratch, may not have been the best, but my icing has always been a fan favourite.

I soon realized that the younger kids liked the personal cake, but they all loved the candy that decorated it more. So, when the cut and shaped cakes became too much, I switched to cupcakes and just went with the candy for decoration. As the grandkids were getting older, they didn’t seem to mind.

We had a family get-together last week that happened to coincide with my sister-in-law’s birthday. She’s not a sweets fan, so she wouldn’t have expected cake, but the rest of the family would. As I had nothing to do for the dinner, I opted to make cupcakes.

I have resorted to using cake mixes as it is so much easier, only 3 ingredients to add and less than 3 minutes with the mixer. Sounds easy. The thing is, with my back, standing and holding the mixer, (and mine is on the heavy side), is not easy. I have my stool but I can’t use the mixer if I sit.

I persevered, got the batter done, filled 12 regular and 24 mini cupcake paper cups and considered the worst of the effort done. Once they were baked, I let the cupcakes cool while I rested for round two.

Hours later I was back, standing at the counter to make the icing. Using the mixer, again, I creamed the butter and added my secret ingredient, a small container of fruit flavoured yogourt. Then it was standing and mixing in the icing sugar a little at a time until I had it at the right consistency.

By the time I had the icing made, and the cupcakes iced, I was in such pain I had to lean an elbow on the counter to get the job done. It was one of those grit your teeth and push through the pain moments.

But pushing through the pain takes a lot out of you, and when things start to go wrong, your frustration level goes up. First, I couldn’t find my plastic containers, and remembered the kids had them from before Christmas. Trying to find containers that might work required a lot of painful bending to search my bottom cupboards.

I remembered the fancy cupcake/deviled eggs/cheese tray carrier in the closet, unused since I’d moved almost 2 years ago. I reached for it on the top shelf and, of course, because things were not going my way, other things fell down on my head when I pulled the box I wanted off the shelf.

It was a struggle to get the lid off, and more of a struggle, one that brought tears to my eyes, to get the lid securely fastened once I’d filled it with cupcakes. Who would have thought my thumbs were so weak?

The mini cupcakes I stored in one Tupperware and three empty Becel containers, the problem being, of course, that you can’t stack cupcakes. When all was done I felt such a sense of relief, had all containers on the table for the next morning and had a well deserved rest.

The next day, I loaded two gift bags, a bag of treats for the kids, and my variety of cupcake containers on my walker, ready to head out the door. The lip at the base of the door has always been problematic, and I have to lift the wheels over it, coming and going.

I lifted the wheels, must have tipped the walker or inadvertently nudged the pile, but suddenly I had three containers of cupcakes upside down on the sidewalk. “Fuck!” I looked around quickly to see if anyone was around to hear me, embarrassed because that is not my usual curse word. But it was indicative of my frustration.

As I drove from my place to my daughter’s, the next town west, about 18 Km, my frustration became tears. I had to finally admit that birthday cakes were no longer on my To Do List. I could not be relied upon to get the cakes made, let alone delivered in one piece. LOL

By the time the family was together for dessert, it was a funny story to tell and everyone laughed. I sat, scraped icing off the lid and re-iced the cupcakes... and the kids never cared that they had been upside down.

But, for me, it was another cruel reminder, one of those No Can Do, Not Any Longer, moments, and another lesson learned on trying to do too much.