Tag Archive - fatigue

Today from tears to praise

March 20, 2011 in Chronic Illness, family, Inspiration, Love between Tommy & I, Multiple Sclerosis, Scripture, SparklesGlitter with 0 Comments

Today I woke knowing I was still exceptionally down physically.  And I’d even fallen asleep pretty much when Tommy did that’s unusual as he goes to sleep and I stay in bed watching podcasts, reading facebook or watching Netflix.  Tommy is one of those guys who shuts his eyes and is snoring sweetly within minutes. He has kindly allowed gadgets and laptops in bed with us. As long as I turn down the brightness and use ear buds.  ((there have been occasions when I’ve laughed so hard that it has kept him awake)) but that’s not my story tonight.

After falling asleep earlier than usual I’d hoped to wake feeling well enough to enjoy doing some things around the house with Tommy today.  If you only knew how selflessly good he is to me you might also know why I desire to feel my best to make the time we’re able to spend together blessed.

Yet, when I awoke I was very sore and achy.The lower backache that so often goes along with a urinary tract infection. And if I had a uti that would explain my serious fatigue of recent. Also would be the explanation for the night up with bladder spasms earlier this week. Sadly this morning things were worse. The fatigue, the pain, the lack of ability.  The sun shining outside only caused me more disappointment regarding my inabilities.   Tommy is so kind, he just wants me to be happy. Even propped up on the sofa with my mac or my ipad.  If he knows I’m enjoying myself in any way and content- he’s happy.   He was working in the back yard with a project he’s desired to begin working on since its begun to get warm.  He needs to tear down much of the deck work my Father did maybe 40 years ago so it can be replaced w/ wood that is not rotting and buckling making it very treacherous  for my dragging feet to walk over. Today was the beginning of that project for him and he was taking down the lattice work rails. I wanted to either be out there with him or inside accomplishing some things to help our house seem tidied up.

But I soon found myself laying on my bed crying. I don’t cry! {Seriously it’s just not my normal response} Yet I was and needed to quickly get over it, knowing that Tommy finding me crying would break his heart.  (of course he knows me all to well and would later see that I had been) I prayed, I ask God to please please help me focus on others and gain the strength I needed just to enjoy some home time w/ my wonderful husband.  I took some meds that I am prescribed for MS fatigue- this I apparently don’t do enough.. somehow thinking that taking the drugs is going to turn into something I have to do to get through the day, and THIS I DON’T WANT.  But I knew I needed the help today.

Because of your prayers, my prayers and the meds, things began to come together.  I was able to send a card to a dear sister who has recently lost her Mother.  I was able to reach out to some online who I know are hurting and needed prayer and a kind word.  I was able to make Tommy some nice ice tea and prepare him some food.  Several things got done.  I laid down thinking I would now be exhausted for the afternoon/evening. Right away  our niece and her precious son stopped in. He’s so cute see the pictures below:

Our precious Great Nephew Eli

After they left  I said to Tommy “put your shoes back on.. we’re going to get the groceries we need”  This was something Tommy had wanted me to do last night and I was unable.

While at the store Breanna (Granddaughter) telephoned to see if we wanted her to come over to spend the night before church tomorrow. Initially I told her that Granny was just not feeling so well and that we’d try to pick her up on the way to church tomorrow. Well she then reminded me with the sweetest voice “Remember- before you call the Dr. Call me because I’m your good medicine”

"Remember before you call the Dr. Call me- I'm good medicine"

 

Oh how we love that child. We called and picked her up on the way home from the grocery.  She’s tucked in beside me sound to sleep. And you know what? I’m at the moment feeling better and very thankful that I was able to accomplish some things today.

Many people who deal w/ chronic illness find that even talking on the phone is too much effort. I’ve heard people say that it’s way easier for them to type than to talk, and sometimes that is my situation. I cannot explain the fatigue associated with multiple sclerosis…. Except to say that the air itself is heavy.  Every movement even thought is done through weighted air.  So it’s not that one is tired or sleepy.. but just unable to move through that heavy thick air to do the things I want to do. And when I’m having a particularly rough time due to fever or the heat outside then it is even hard for me to sit upright.  That’s when I’m horizontal or sideways surfing.

That’s my story for today and I know some who will surely relate.

“Remember your word to your servant

in which you have made me hope.

This is my comfort in my affliction,that your promise gives me life.

Before I was afflicted I went astray,

but now I keep your word.

You are good and do good;

teach me your statutes, with my whole heart I keep your precepts;but I delight in your law.

It is good for me that I was afflicted,
that I might learn your statutes.
The law of your mouth is better to me
than thousands of gold and silver pieces.

Your hands have made and fashioned me;

give me understanding that I may learn your commandments.

Those who fear you shall see me and rejoice,
because I have hoped in your word.
I know, O Lord, that your rules are righteous,
and that in faithfulness you have afflicted me.
Let your steadfast love comfort me
according to your promise to your servant.
Let your mercy come to me, that I may live;
for your law is my delight.

Forever, O Lord, your word
is firmly fixed in the heavens.
Your faithfulness endures to all generations;
you have established the earth, and it stands fast.
By your appointment they stand this day,
for all things are your servants.
If your law had not been my delight,
I would have perished in my affliction.
I will never forget your precepts,
for by them you have given me life.
I am yours; save me,
for I have sought your precepts.

I am severely afflicted;
give me life, O Lord, according to your word!
Accept my freewill offerings of praise, O Lord,
and teach me your rules.
I hold my life in my hand continually,
but I do not forget your law.

I rise before dawn and cry for help;
I hope in your words.
My eyes are awake before the watches of the night,
that I may meditate on your promise.
Hear my voice according to your steadfast love;
O Lord, according to your justice give me life.”

Verses Quoted from Psalm 119 ESV

 

 

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Hate Re-Runs

December 3, 2009 in Multiple Sclerosis with 2 Comments

Another episode of Fatigue

My biggest struggle with Multiple Sclerosis. And I know I’m not alone because this is the #1 symptom reported by others with MS.

But when enduring another episode I want to cry out for the old me. The one who could wake up at 5:00 and get my house in order then go drive my school bus and then meet clients at the YMCA for personal training by 8:30 and keep that going till leaving the Y to come home and walk my dog about 1:00 before driving my afternoon bus route. Then I’d come home.. make dinner and either go out racewalking or go back to the YMCA to teach a spinning class. In the midst of that excitment I managed to enjoy fellowship with folks and keep my house in order. WOW

Now there are days that I am unable to even get up and dressed before noon.

I spend entirely too much time horizontally. Plenty of days I don’t even take the anti fatigue meds prescribed for me because the fatigue is beyond pharmaceutical help and every day I go without meds causes my tolerance to be less so I’m able to benefit on the days that they will indeed help.

I think of seeing folks just yesterday and knowing that they saw me out and looking good. Yet they don’t see me on “these days”.

No doubt this is a depressing post. But sometimes it feels better just to share my burden, knowing that there are dear folks lifting me up in prayer.

I can close with hope. Because when I’m down and unable… He is always more than able.

Psalm 34:3
O magnify the LORD with me, and let us exalt his name together.

Psalm 121:4
Behold, he who keeps Israel will neither slumber nor sleep.

Jeremiah 31:25
I will refresh the weary and satisfy the faint.”

Weakness or Fearlessness?

October 9, 2009 in Inspiration, Multiple Sclerosis with 2 Comments

You know some how we’re conditioned that to use a crutch is a sign of weakness?

But Tommy has been encouraging me to use the cane more often as he knows I hesitate to do things with the family that will require much walking, especially in the dark.

In stores I always grab the cart because it gives me the security I desire along with something to lean on.

But yesterday when we went to the Fall Festival and I took the cane (it is a special cain as it was not only my Father’s but his Father’s before that)

I was amazed how much more secure I felt walking in the crowded street at the fall festival.

I’ve decided that a cane is something to be thankful for. Now maybe I’ll have an artist friend (Robin.. Robin) paint something pretty on it because it is just plain wood.

So if you see me with a cane… just know that I am choosing to add stability and fearlessness to my life.

Maybe I’ll encourage someone else that using a cane is not a bad thing but an added help… and maybe life can be enjoyed more w/o being worried about missing a step all the time.

Just How it is

September 28, 2009 in Multiple Sclerosis, Video with 0 Comments

I’m Just sayn’ Yes

September 11, 2009 in Inspiration, Multiple Sclerosis, Ourselves And Family, SwitchingGranny's Stuff with 1 Comment


I was paying attention in the 1980s and 1990s during the United States “War against drugs”. The slogan of course was Just Say No

I saw first hand people who ruined their lives by becoming addicts. Both with rereational illegial drugs and prescription drugs.

I was addicted to cigarettes for decades. The adults I was exposed to as a child were all alcholics. Every special occasion was celebrated by having drinks. And every evening began with “Happy Hour”. I had a few years of my adult life when I drank and did not have control over my drinking. Ultimately I was delivered from the desire to both drink and smoke.

But along comes multiple sclerosis and the multitude of symptoms that come along with it. (isn’t that what MS stands for?)

I have been in a battle regarding the use of pharmaceuticals since my diagnosis in 2003. There are drugs for the pain associated, the stiffness that can make walking difficult, drugs to help with sleep and the all important drugs to fight the paralyzing fatigue.

I’ve posted a picture before of my load of medications. I’ve fought to only take drugs when I felt they were really needed.

However my quality of life has become more and more difficult without the help of these tools.

My Neurologist has often said “Why don’t you take what actually makes your life better on a consistant basis?” It was because I did not want to be dependent upon pills to get through my days (and nights).

I am coming to the conclusion that I need these drugs. And to try to be the person who doesn’t need medication to get through the day is literally a dead end street for me.

Today I didn’t have the strength to get moving and ready to attend a Bible study that I was looking forward to. I’d been down with fever & fatigue for several days before finally enjoying a good day and a half.

Yet here I was again unable to accomplish those things required to be independent or even to do just what I was looking forward to.

There are several different drugs for MS fatigue. I find if I take any of them on a regular basis they don’t help much. So I have to switch around from one type to another. Yet I still didn’t take any on a regular basis.
I was only taking them when there were special things I needed to do.

At nearly eleven a.m. I took an amphetamine. By noon I was finally getting my shower and making the bed.

Ultimately I’ve gotten some things done around the house and feel some what accomplished.

Having the help of pharmaceutcals is a blessing. Who would want to spend days on end being “horizontal” when there is a way out? I’m no addict.. I have multiple sclerosis. So there! I’ve convinced myself.

And I’ve come to a new decision regarding taking drugs.. for me it’s “Just say Yes!”

A Rant In Weakness

July 10, 2009 in Inspiration, Multiple Sclerosis, SwitchingGranny's Stuff with 4 Comments

Yes, last night’s post might have looked like my “goodbye” to this world. But it wasn’t! I was just my expressing my desire to be free from this flesh and present with my Lord.

And it is when I’m sick that I feel the most desirous of my eternal home.

Here is the deal that has me down:

Its having to give up on things that I so want to participate in. I’ve mentioned before how difficult it is to be undependable where I can’t even count on myself!

A few months ago I lost a $50.00 deposit for a weekend retreat that I was looking really forward to attending, because illness made it impossible for me to attend.

And now I’m looking at this S’mores & More family weekend. I really want to go. We’ve invited the Grandkids. I can’t imagine not being able to participate.

Right now I am just praying my heart out that I will be well enough later in the day to pack and get ready.

In less than two weeks I’ve been entirely blessed with plane tickets to spend a week with some precious online friends in Texas. How I hope and pray that I can count on that.

So I get a choice.. ultimately should I just give up on making plans and sit here without any excited expectations around the corner? Or should I continue making plans with the knowledge that there is a possibility that it won’t work out? I figure I should keep on hoping for the best and count on being able to do these things.

“You are looking well”

May 6, 2009 in Inspiration, Multiple Sclerosis, Ourselves And Family, SwitchingGranny's Stuff with 0 Comments

It has never been my desire to place the spotlight on myself especially regarding problems of any kind.

My Father was one who never had anything except kind things to say to folks. So maybe I learned from him that to complain or present problems is not what pleases people and therefore is not acceptable.

Yet, since becoming a member of the family of God I have a Father who tells me to share my burdens with my brothers and sisters. To reach out for prayer. Knowing that He has instructed us to hold up one another in prayer and thereby minister encouragement to the body of Christ.

So I’ve wrestled regarding communicating personal needs while living with a progressive disease process.

I began answering positive saying “I’m great thank-you”. Yet as difficult days became more common I would say ” I’m very well today thank-you”. When having to answer the “how are you” question during a rough time I am nearly torn in pieces when forced to say “not too well right now.” Boy that hurts.

Ahhh but what hurts? The fact that I am not making you happy with my words? My words will never be what brings happiness or not to anyone. That is placing too much importance on myself.

Less of me… More of Jesus!

My heart is to encourage you. And if I respond with a thankful humble heart, giving all glory to God, good days or bad, I can let Him encourage you.

And to let you know that if you are seeing me- then I must be having a pretty good day. Because I’m not out there for you to see for the most part on the bad days.

So many of the symptoms of multiple sclerosis are really invisible to most folks anyway.

Yesterday for the sake of the blog I rounded as many of my prescribed medications as I could find and took a picture of them.

Not for sympathy but to validate the fact that even if I am blessed to “look well” I’m dealing with lots of symptoms that aren’t visible or that require pharmaceuticals to keep under control. Thankfully I don’t take all of these meds every day. But they’ve been prescribed for symptoms related to multiple sclerosis. (except for the natural hormone replacement I have compounded and take every day).

Here is the picture that speaks volumes for Granny… a woman who didn’t take hardly a pill a decade ago:

Giving in?

April 15, 2009 in Inspiration, Multiple Sclerosis, Ourselves And Family, Scripture with 3 Comments

When you see me I’m having a good day. And thanks be to God I have plenty of great days.

But there are “those days” when you don’t see me. When my intentions are good and plentiful yet my abilities are not. It is always a battle when “those days” hit. They generally come on without warning. Initially it is an overwhelming perception that the air around me has become heavy. Every little thing becomes monumental. Just the regular activities of daily living seem like overwhelming tasks that I am unable to accomplish.

The “old me” (before chronic disease became a part of my life) still sees myself as lazy when I don’t follow through with my goals and plans. Especially if this inability includes simple things like getting dressed and getting the bed made and the laundry done. Or even doing simple hygiene things like washing my hair seems too labor intensive.

So I’m trying to get adjusted to the fact that I cannot count on myself to feel great from one day to the next. In fact I am having to realize that if the Lord Himself has allowed this affliction to continue, then HE will show Himself strong through me and obtain glory through it all.

Am I giving in when I realize I cannot do the things that I’ve committed to doing? When I stay in a horizontal position most of the day? When I let my husband or family down regarding plans we’ve made and I can no longer fulfill?

No- I’ve decided not. I am enduring this trial to become stronger in Jesus and to somehow allow Him to show His grace and mercy through me.

No I am not giving in. I am yielding and trusting and praying for a way that this will be used to minister compassion towards someone else who struggles with some of the same “can’t depend on myself” issues.

Horizontal

March 5, 2009 in Multiple Sclerosis, SwitchingGranny's Stuff with 0 Comments

Portrait by Breanna

One of the biggest issues I have with multiple scleoris is that I am unable to depend on myself. Good thing I am a Christian and can consider less of me and more of Him my goal. Otherwise I’d be so frustrated.

The other huge problem I have is that dealing with a chronic illness makes me self involved. The Lord knows my desire is to be selfless and a servant to others.

I blogged about my issues with urinary tract infections last week. And the most recent one caused me to feel I was going down hill quickly. Like a train on the back side of a mountain. Faster than I could keep up with. And my back was aching along with chills & fever. So I emailed a physician friend and of course she suggested that I get to the E-room to be sure it wasn’t a kidney infection that could get into my blood stream and be hard to treat. (it was Sunday morning)

So we reluctantly made the trip to emergency. It was a better experience than I’d anticipated. Nice folks and not an all day affair.
My temp was down at that time. My urine came out showing very little problems. My blood work was fine. Yet I was clearly in pain and miserable. They ultimately did a cat scan to check for a kidney stone. Nope

But they decided that since I take antibiotics prophylactically, and had indeed taken 3 cepro last week. It is possible that an early infection wouldn’t show up. So they are treating me like it is a uti that was heading towards my kidney.

Who knows.. makes me wonder sometimes if I should give up trying to find out why I am down when I am down. Just treat when I need to treat and wait to get well again.

My symptoms were so bad I had to also take pyridium. And it helped. By Tuesday I felt well enough to take Breanna to her dance class.

But that was it. Since then I’ve been horizontal on my sofa. Sad but true. How desperately I want to have energy and strength enough to just do things around the house. Yesterday I tried one of my amphetamine pills for ms fatigue. No help at all. Fever off and on.

Can’t do much more than lay with my precious macbook on my lap. And lots of praying because besides needing it myself.. I can serve the the Lord and others by engaging with my Lord and the privilege of prayer that He has given me.

Hoping to present a better report soon.