Friday, November 22, 2013

The Life Unseen?

I've been reading a book. It's called The "MS Project 1. Orange is the New Pink". I didn't think I would like it as much as I am. I normally don't like MS books. They tend to depress me. I normally glean them for applicable information but, never read them all the way through. This one is having a totally different effect on me. It's been soothing. It's made me feel not so alone. It's been cathartic to read that others have or have had the symptoms I have or have had. I'm really not imaging them, they are real, they really do happen, even to others. Even the feeling of being "crazy" happens to others.
It's been a relief to read about others trouble and their triumphs. To read of others getting through these times. It helps.
The Life Unseen?
After finishing my current read, I reflect on my MS life. Evidently? I live the life that is an advantage. Who woulda thunk it? A life of advantage.;-)
O.k. all sarcasm aside and in all seriousness. My life? I have an epiphany. My circumstances have fallen into a seemingly perfect way for me. It seems my slow moving, guarded, quiet lifestyle is a benefit to me and my MS. This lifestyle has been a benefit to my youngest son for years and now one to me. His life benefits me. I'm never alone. Truly, spiritually speaking never alone, yet, also physically speaking. My wingman is always here for me and I for him. Beyond that.
Homebody me is less stressed. Stress tends to make MS symptoms go a bit crazy.
Homebody me is seen less. I'm usually only out on my "good days". Hence the statement "You look so good." Only my hubby and wingman see me on those not so good days.
That leads me to my next statement. Most of my MS symptoms are invisible. I think. Actually, I think, all of my MS symptoms are invisible. I joke "it's all in my head" and truth be told that's exactly what MS is. I have the MRIs to prove it. ;-)
I seem to have a backpack of guilt about being sick. I have a hard time forgiving myself. I don't like who I am most of the time. I react poorly to my circumstances. I have a reaction that tends to flash. I'm harsh to those around me most (hubby & wingman). I try not to be so reactionary to things I am currently not understanding. I try to use a poker face during times of fog. Which I'm sure can be the wrong thing to do at time. Judging by peoples expressions. ? Who knows. Maybe that's a false assumption.
Things are hard to accomplish most days. I have a cog fog that hovers around me. Sometimes like chicken broth. Sometimes like split pea soup. I can't control this. Clarity to confusion can shift without warning. If I'm working toward something and get interrupted I unfortunately flash angry. I'm ashamed by this. I try to not have things be so important to me. But, live isn't really like that, is it? We all have things that need doing. Still I can't seem to forgive myself.
I daily, hourly, rely on the Lord Jesus to help me live this way. For Him to be strong in my weakness.




Friday, August 16, 2013

Monster Summer

Not what one would think.

So this is what's happening.

The summer is beautiful. The things that summer brings are beautiful. The heat is not beautiful for me. I am effected by heat just as many other MS patients.

Heat slows the signals sent by the brain to the different body systems. Even in healthy people heat will do this. With MS it is compounded.
The damaged nerves that happen to MS patients mess up the signals sent to the different body systems. This either takes away the system entirely, or diminishes the system because of the slowed or broken signal, and/or the brain tries to re-route the signal to get the job done.
O.k. All this activity takes energy, endurance, stamina, spoons, whatever you want to call it. Something a healthy person can do some one with MS may be able to do except it can take more energy for the MS person because of the short circuiting that happens. Even just thinking something through can take too much energy because the process is impeded. What use to take just a nano-moment for the brain to reason out when it was undamaged can take considerably longer now and this process can zap the MS sufferer's energy. The resulting fatigue becomes the Monster. So this MS sufferer gets up in the morning. Functions pretty well til the afternoon. Then the afternoon rolls around and she is fatigued and needs to rest. Add heat into the mix and the fatigue happens sooner. Let's say the morning didn't have any physical requirements just mental. The same thing can happen. Mental requirements can take their toll just as physical whether one has MS or not.
It's been a Monster Summer
I am sorry if this is all remedial. Or I'm sorry if this is all a jumble. I am just trying to reason this out for myself. Or trying to excuse myself for the lack of performance.

This past year I had been doing pretty good. May hit me like a ton of bricks. We had a heat wave that slammed me physically and mentally. That slamming progressed into June, July and now August. With me not regaining my previous vigor.
I am trying to stay cool and ahead of this monster but there are days that I lose this battle. Life has become more guarded. I have less spoons right now. I've seemed to have lost some in the heat.
I have fallen in love.
I love my ice vest. It was given to me by STACOOL. Thank you STACOOL! I love my air conditioners in my home and my car. I don't necessarily like feeling trapped in my house. I can't wait till fall to see if I get some of my spoons back.
It seems like a mad science experiment.
I am thankful I live in a place of all seasons and a place were it does cool down in the evening.
I am thankful.

Keep in mind. Heat can effect everyone. Try to stay cool. Love the heat, enjoy it but keep hydrated. Water, Water, Water. I can't stress that enough.
Have a great summer.

Thursday, July 18, 2013

One Thing

Today's enter:

I've been trying to pen a few things about my journey with MS for the past couple of months. I have a few notepads titled with the start of some things. I just don't seem to get them put together and put up on this blog.

Maybe today.

Maybe my life now is lived in chunks and that is how it works now. I know now how MS is affecting me and the things I need to attend to to stay abreast of things at home. Beyond that I have adopted a "one thing" rule. It simply means. I can try to organize and do "one thing" per day out of the house.
I use to be able to plan and conquer several duties or errands in one day. Set up a plan, pack up what was needed, and go like crazy. Now I live more guarded and "close to the vest", so to speak. I can still accomplish things I just need to do "one thing" and be satisfied with that. It seems foreign to me and has been quite the learning adjustment but, that's what works here for now.

A Note written this spring:

Almost three years in and I must say, the things I heard or read about at the onset, the things I didn't really believe would be true, are. When I read about debilitating fatigue I didn't believe such fatigue could really be true for me. When I read that you could lay down for a while to relieve it to some degree I didn't think that would be the case. That it wouldn't happen or that I wouldn't need to do that. Well, things change and here I am. Yep, it does work for me, if I am having that type of day, it does help to lay down for a while. A complete recline. I love/hate it. I don't have new symptoms I think. I do have at times worsening of existing symptoms tho'. Heat will exacerbate them, as will stress. It's quite ridiculous. Things that I use to tolerate just fine Can take me down in a moment. I've moved from wondering what this symptom is and how long I'll have it, to, what I call "status quo" symptoms (appearing daily) to, what makes them worse.

I've been hanging on to this note:

A month ago (June 2013) I had an appointment with my neurologist. She is wonderful. Very engaged and a fire hose of information.

She says: I try to put it into my own words

It's not uncommon to have damage in areas of the brain that do not show up as taking visible abilities away. It's silent damage. Damage that does not show but, damage non the less. There could be two or three episodes of damage to the wire-like arms of nerve cells (axons) and the insulating tissue (myelin) that wraps around axons, disrupting nerve signals per year. One stays on the DMM (disease modifying medicine) to lessen the amount of episodes. Hoping for one instead of many. Without an MRI there is no way of telling if one is having less episodes.

A note before my neurologist visit. I gave her a copy:

My condition, I believe, has not really changed. However, I have noticed my symptoms increase during times of stress or when I'm too hot.

My symptoms are;
Cognitive problems (daily) Equilibrium/Balance problems (daily) Fatigue/Tired (daily) Weakness (all over, mostly right hand) (daily) Numbness (both feet, mostly right foot)(daily) Spasticity (Legs) (weekly) Depression (occassionaly) Constipation (occassionaly) Difficulty urinating (rare) Tingling in left foot (March 31, 2013, December 27,2012) Leg kicks in the pm (Feb 19,2013) Bladder pain. Infection? (Jan 19-25, 2013) Leg pain (December 23, 2012) Hand pain when pushing down (December 2012) Dizziness (December 13,2012) Tingling hands (November 30,2012) Left hip hurts (November 18,2012, June 6,2013) Twitching left eye (June 6, 2012)

Medicines; Rebif

Suppliments; Vitamin C Vitamin E Vitamin D Cranberry St. John's Wort Milk Thistle Garlic

Pain relief; Asperin Acetaminophen

A few weeks ago:
Blood work came back good. Look's like I'm tolerating Rebif o.k.

Today:

Reading through this list again I realize that a lot of these symptoms are invisible to others and only really effect me and mine. Everyone has things that they are burdened with, some invisible, some visible. It behooves us to be gentle and kind.

I've been learning that you don't have to go through this life alone. I've been a follower of Jesus for most of my life and I still am. I have learned to lean on Him more and more and He's o.k. with that. Many a hymn has become my battle song. Lately this one sings in my head and heart.

’Tis so sweet to trust in Jesus,
And to take Him at His Word;
Just to rest upon His promise,
And to know, "Thus says the Lord!"

Refrain

Jesus, Jesus, how I trust Him!
How I’ve proved Him o’er and o’er
Jesus, Jesus, precious Jesus!
O for grace to trust Him more!

O how sweet to trust in Jesus,
Just to trust His cleansing blood;
And in simple faith to plunge me
’Neath the healing, cleansing flood!

Refrain

Yes, ’tis sweet to trust in Jesus,
Just from sin and self to cease;
Just from Jesus simply taking
Life and rest, and joy and peace.

Refrain

I’m so glad I learned to trust Thee,
Precious Jesus, Savior, friend;
And I know that Thou art with me,
Wilt be with me to the end.

by Louisa M.R. Stead

I don't mean this blog to be a place to complain. I tell my husband that I feel like a whiner when I discuss my MS symptoms to anyone. They are what they are and they do make me who I am after all. I am doing o.k. I have bad days and o.k. days. Jesus knows and has and will guide me through. How I’ve proved Him o’er and o’er.

Wednesday, January 9, 2013

Under The Circumstances

I know a lady. She attends the same church that I do. She's nice to be around. A fount of caring, a fount of humor.

On Sundays I sit with my folks and she sits behind them. We exchange greetings and share bits of news before and after service. She knows about my MS. (all of the church knows, we're a small congregation, i garner their prayers)

Most Sundays, when we are both in attendance, she asks me "how are you doing?" I use to say "fine" but this time I said "Under the circumstances, I'm doing o.k." She touches my hand and with a booming voice says "What are you doing there?" I almost jumped out of my skin. Then in her gentle way, she tells me a story and about a friend of hers. How this friend had told her the same thing. "Get out from under those circumstances. Don't stay there. Don't stay under them!" We had a great laugh.

I don't say that any more, and I try not to stay under my circumstances any more. It was a delightful reminder to "Keep looking up" from a dear friend.