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 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)
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.
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!"
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!
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.
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.