Activity VS Fatigue

I just realized how long it's been since I posted. I have created many posts in my head, as I lay in my bed, and like so many other things I want and hope to do, they never get done.

The fatigue that is a common complaint with MS has been particularly bad for me in the past few months. The other day I swear I was up and active for only six hours of the day. I had a late nap that lasted hours and left me feeling dopey and dragging for the evening.

Today I got up with good intentions. After a look in the mirror, my hair standing out all over the place, I knew I a shower was first on my 'to do' list.

The thing is, my back was aching, and I was having trouble walking and standing. I pushed on and got in the shower, finished and stepped out and right to the toilet to sit, tired out and in pain. I toweled off, applied the cream as my skin is so dry and it was back to bed. I was played out, so tired, worn out, and it was just after nine in the morning.

An hour or so later I was up, as I needed to get something to eat so I could take my medication that has to be taken with food. As I ate I checked my E-mail, Facebook and decided to write this blog post.

My head feels fuzzy, and I need to lie down again as I feel too tired and can't hold my head up any longer. But I have opened my curtains to the sun, let my neighbors know I'm still alive in here, so that's progress.

But, I feel a nap coming on and it's not even noon. I may not sleep this time, might read or crochet, but sitting is just to tiring and the position puts pressure on my knee so increases my pain. I need to lie down, straighten out my knee, support my head and upper body.

Maybe later I'll find the energy to go out and enjoy this spring day, which will result in another nap and a recovery day tomorrow. Such is my life, but what other choice do I have? And those times I get out and see friends and family, they make the crash days all worth it.

On Being a Hermit

I have been accused of being a hermit, because I like to stay home and don't go out unless I have to, or it's some family thing. I like the weekly soccer games for my granddaughter, because we have a visit first, and I get driven to and from the game. It makes my life so much easier.

I get to the store when I need groceries or a prescription filled, and think next winter I may make use of delivery services offered in town.

I realized just of late, why I like being home. Okay, some of that is that being creative is a solitary process, but the other is that I feel better at home.

I use the cane when I'm out, but after a short walking distance, am in such pain that walking is a struggle. I get tired, need to sit and there isn't always a spot to sit, so I lean on counters, whatever is handy. I look ungainly, and feel awkward. I should use the walker when I'm out, but it doesn't work when you use a cart in a store.

At home I walk about without the cane, and manage quite well, because I can sit when I need to, or even lie down for a short period. I do things in steps, with rest periods. Small chores take me days, like dusting or vacuuming, even dishes, and I can accept that as I have no one to answer to but myself.

So, I guess I am a bit of a hermit, but now I understand that at home is where I feel the most like me, and not that person struggling with a chronic illness. And isn't it fortunate for me that I have plenty of things I like to do...painting, reading, writing, crochet...to fill my day.

I have always been a bit of a loner, but people didn't notice as much when I lived a regular life of work and family, and now that look at that as a negative, when I think it's a positive. If I didn't have my hobbies, the pain and struggle of MS would defeat me.

It is what it is.

Winter Blahs, Spring is Near

I can't believe it's been more than a month since I posted. The winter is always a rough time for me, but then, when isn't it when you have a chronic illness.

I haven't felt as well of late, the fatigue at times overwhelming that I spend the majority of my time in bed. Deal with it, I tell myself and try to get the things done I need to do, but that eliminates so many other things.

Last week I was to have lunch with my brother, which meant a long drive, followed by a long lunch. As much as I love these trips into the city, the time with my brother, the opportunity to shop, sometimes I can't face even the walk across the parking lot to my car.

My brother, the best brother ever, came to me instead, and we had a visit, and lunch out. I so appreciate his effort, and the gifts.

It was a busy week, (my birthday), so I had another dinner out and some company. By Friday I was done and slept, off and on, for like eighteen hours. Felt like I'd lost a day and couldn't keep my calendar straight.

Apparently my favorite saying is "It is what it is" and I have a beautiful plaque to prove it. I think that sums up things for me, this is my life and I have to make the best of it, keeping fighting through the pain and the fatigue, or risk missing out on the good life has to offer.

And, it doesn't hurt to have some help along the way.

Sleeping Patterns

I rarely sleep more than a few hours at a time, and frequently suffer from insomnia. It was suggested at one time that I might have sleep apnea, and I had to laugh.

I have a friend who went through the sleep study and does indeed have sleep apnea. They told her the number of times she moved during the night, and the number of times she quit breathing, and I was astounded. She now wears a machine at night to regulate her breathing, and sleeps much better.

When I go to sleep, I settle in on one side, and when I wake a few hours later, I'm in the exact same position. I turn over and go back to sleep, and again, don't move at all until I wake again.

Is it any wonder I wake up with aches and pains?

Today, it's my left elbow that just aches and throbs. I assume it's because of the position it was in for the last few hours, as I haven't done any lifting or such to irritate the joint.

This is just the way it goes, one morning it might be the elbow, another my back, or a hip or shoulder. I never know, but the one thing that's a guarantee, is I will wake with pain, of a varying degree of severity.

It's no wonder I am not a morning person.It takes a few hours to get me moving to where I can consider going out, or getting anything accomplished.

Add on the worsening MS fatigue and it's frustrating. My mind has all these ideas, but the body is too tired to consider it or to make the effort.

Little by little, I'll get things done...'cause my mind never quits.

Memory Glitches

The cognitive issues with MS are very complicated, as is anything related to the brain.

I can see something I know I should know, and be totally confused. Like this week, I was typing in my grandson's name, and knew as I looked at it that something was wrong. It seemed off to me, but how could I have made a mistake with his name, I've been writing it for 11 years.

So, I left it the way I'd written it and then today, saw the way someone else wrote it and yes, I did spell it wrong. I added a letter, sounded the same, but not spelled the same.

There are other times I have looked at something and can't understand what it means. Like the day I was driving and had a green light, and was momentarily confused as to what green meant. Lucky for me, I've never been confused with the red or yellow.

I know we ca all have moments of forgetfulness...like where are the keys, what is my postal code, you get the idea. The kind of lapses I experience are different, and I think more like what an Alzheimer's patient feels when he/she no longer recognizes what was once familiar.

Lucky for me, I have a family who understand these lapses and don't make a big deal of it. But for me, I have a hard time with these brain issues. It's hard to know and accept that you are not the same person you once were, in smarts and personality, and the real scary part, who you might become in the future.

One day at a time.

Cold Feet

https://www.verywell.com/cold-feet-and-multiple-sclerosis-2440826

I found this article about cold feet and MS.

My feet feel cold all the time, in spite of wearing heavy socks. As evening approaches my feet will be numb, and painful.

I go to bed early and lie under my electric blanket, something I got for Christmas and have only used for these weeks since the holiday. I feel it helps, but the pain I feel each night makes me constantly move my legs, and wiggle my toes.

My feet appear very white. When I could get into the tub I would have a bath before bed to warm up my feet, but the warm water actually made them hurt more.

I apply my analgesic ointment from the knees down the outside of my leg, and that seems to help, along with what I call my 'magic' blanket.

The thing is, you have to find what works for you and stick with it. Anything you can do to not let this disease suck anymore of the joy out of your life than it has to.

Sorry, that sounded pretty 'woe is me' but it's one of those pain filled days and I know I won't get any of the things I hoped to do done today.

But, hey, the sun is shining, the sky is blue, my drapes are open to enjoy the view of my neighborhood. I'm thinking spring, and avoiding any glance at the thermometer.

MS- The Subject of a Speech

How many people really like public speaking? I hear my grandchildren's dread and fear when speech time comes around at school.

This year, my 11 year old grandson did his speech on Multiple Sclerosis. I was touched that he felt an interest in my disease, enough to share with his classmates. He did his research, for the usual, cause, symptoms and treatments.

But then he talked about how the family joins together for the annual spring MS Walk. He talked about how the kids ride their bikes and I pick them up at the half way point.

This young man has learned how to help me, in all the simple ways, an arm when I go up or down a step, holding a door open. I am very proud of him, that at his age he can be this sensitive to the needs of another.

There is an element of fun to the walk that he mentioned in his speech. The first year we did this as a family, we won best team name "Debby Does MS". (Not that his classmates would get the reference, I hope). The second year we all wore neon green T-shirts. Then we added hats and name tags.

I love that after the very informative beginning to his speech, he lightened the mood talking about the fun of doing the walk. And he ended it in the best possible way, that we might meet at the walk.

Thank you, Kiddo, it means the world to me that you made MS the topic of your speech.

Love you to the moon and back.