I have lots to do everyday. We home school our youngest child. (The older three have graduated.) I have laundry, dishes, cleaning, organizing, cooking, meal planning, prepping for visitors, not to mention caregiving. There is shopping, balancing the checkbook, helping our adult children with decision making, investing in relationships, answering e-mails and teaching our youngest daughter how to keep a home.
It's a huge responsibility.
There have been times when I haven't done these things. A time when I was so "under the circumstances" that getting out of bed and brushing my teeth were just too much. I remember a time, not too long ago, when I felt very overwhelmed and frustrated.
But once I dealt with the emotions of caregiving, being a wife and mother, the loss, the grief, etc. and once I learned to accept things the way they truly are, once I learned gratefulness and got in shape mentally and emotionally, I've been able to deal with life once again.
Sure, I still get overwhelmed. And, I still get frustrated. But, I am able to do the things that have to be done. I am no longer non-functioning.
And, now I even have energy and time to do the things I love. I've started reading again. And, I've started quilting too. And it feels really, really good.
Tuesday, March 29, 2011
Friday, March 25, 2011
Wednesday, March 23, 2011
Grace and Peace
I have been amazed at the transformation in my life over the past 11 years since diagnosis. I've been through denial, guilt, anger, frustration, depression, heartache, turmoil, and fear.
Elisabeth Elliot once said, In acceptance lies peace.
I struggled for many years in wishing things had turned out differently. I felt we had been robbed. I felt cheated and sometimes even abandoned by friends, family and God. I was alone and lonely.
And, then slowly, ever so slowly over time, I came to accept this life. I came to accept this illness. No, I don't like it. I hate MS. But it is what it is. And, God has allowed it. I've come to rest in the fact that nothing happens by accident. I've come to see that all things are in HIS hands. And, in this acceptance, I've found peace. And, I found HIS grace to be sufficient.
I don't always feel this way. Some days you might see me and question my sanity, but under it all, there is a sense of peace.
HIS hands are on me. HE loves my sweet hubby more than I ever will. HE has my children in HIS hands. And, I can rest. I can rest in HIS grace and peace.
Praying for grace and peace for each of us, every day.
Tuesday, March 22, 2011
Remembering
October 1999, our family went on our annual trip to see my dad in Arkansas. Each year since our children were babies, we drove 400 miles to see the changing of the leaves. We would visit my dad and stay with him and take day trips to the nearby Ozark Mountains. We hiked trails, visited waterfalls, took scenic drives and watched as our children discovered scenic vistas.
Dear Hubby had been struggling with fatigue and seemed to have some issues with his knee. The previous year, on our annual trip, he'd barely made the mile and a half "hike" (which was more of a walk on even trails) called Lover's Leap. Toward the end of the trail there was a natural staircase composed of huge boulders. Our tiny three year old was strapped onto Dear Hubby's back and I watched at the bottom of the staircase with the other three children and watched him wave back and forth. He seemed unsteady and terribly weak. It scared me. I took our baby girl from him, strapped her on my back and all of us helped Dear Hubby off the trail. We finally made it back to the vehicle. I questioned him asking, What was that all about? He had no answers and just said, I don't know what's up, I'm just so weak. That was also the trip where he fell while walking along a rocky river bank. Strange.
So in 1999, we were determined to still make our annual trip, but instead of our usual hikes, we were focusing on scenic drives. We had learned to adapt to this weird weakness. Dear Hubby was still able to do a tiny bit of walking, as long as he had places to rest. As we drove through the mountains, we spotted a new state park we'd never seen, and we decided to check it out. We drove around inside the park, and one of the kids spotted a sign for a trail to the "natural bridge". We discussed what that meant, and they wanted to see it. Upon closer inspection, the "hike" to the natural bridge was just 1/3 of a mile. This trail was handicapped accessible, wide paths, paved with peat gravel. It seemed pretty easy and Dear Hubby said he would try. We started on the trail, and watched in horror as he moved from tree to tree, leaning on each one for support. Still within sight of the vehicle but still on the trail, there was a bench and he threw himself on it. He couldn't do it. He couldn't make the 1/3 of a mile trek to the natural bridge. He suggested that me and the kids go ahead, see the natural bridge and return. He would wait there. I told the family, No, if dad can't go, let's not do it. This is a family vacation.
What I didn't say was that I was terrified. Something was seriously wrong with my 38 year old husband. We got back in the vehicle and drove back to dad's. The rest of the trip, we drove scenic drives and didn't talk about what had happened.
I came home and got on the computer, searched in the internet and found very, very little medical information. Remember in 1999, the internet wasn't anything like it is today. I took an afternoon and visited our local library. I sat down with medical reference books. I couldn't check them out, so I sat and read in our library. I followed the information, and very quickly discovered that all of my Dear Hubby's "issues" seemed to be neurological. Searching through illnesses and diseases that cause neurological symptoms, I narrowed it down to one disease. And, I as read, I saw my husband in that book. Things began to make sense. Things we'd never related to his "weakness". The eye trouble, the weakness, the bladder issues, the uncoordinated movements, everything.
The Monster began to emerge from the hazy fog, and it had a name. Multiple Sclerosis.
I knew then, that my sweet husband, who had been ignoring my advice to see a Dr. HAD to make an appointment immediately. I went home, and shared my findings. I told my sweet husband that I thought he had MS. I shared with him all the signs and symptoms. We discussed it and he agreed. It sounded very much like MS.
The feeling that day? I felt good in finding out there was a name to this Monster. Over the next few days, the realization sunk in. I knew that MS wouldn't kill my sweet husband, but I began to think back over what I'd read. Progression. No cure. Disabling. I began to put pressure on him to go to the Dr. He refused. Why should he? He knew what it was now. What more could a Dr. tell him? Was there a cure? No. Then why bother?
Over the next few months, we had many "discussions" about this. I nagged and cried, I worried and fretted. Finally, in March of 2000, we got the official diagnosis.
This month marks 11 years since that day we sat in the doctors office and were told that MS was probable. No one wants to say it right away. Although, by the time we saw the doctor, my sweet husband was already very progressed. He had lost muscle mass in his back, arms, legs, shoulders. A trained eye could see what we had overlooked for so long.
This morning we were talking about his diagnosis. I asked him if he could remember what he was feeling that day. He said remembered feeling just fine. He thought to himself, hey it's MS. We know what it is. If this is as bad as it gets, I can handle it.
I suppose, since the doctor hadn't made a firm diagnosis, he didn't go into what lay ahead for my hubby. He referred us to a neurologist and wanted hubby to get an MRI and a spinal tap for a firm diagnosis. But we all knew the truth.
What I felt, I really didn't discuss much. It takes time for all of us to process the information. I assumed that my hubby knew what a diagnosis of MS meant. I did. I had read it all. I knew. And, maybe that is why I panicked. I thought he knew. He was handling it well. But he didn't know the entire truth.
This is National Multiple Sclerosis Awareness Week.
Here is what I put on Facebook this week:
A lot of people do not understand MS and what it does. Please visit the National MS Society website and read about MS. There are different types, and Forrest now has a progressive form of MS.
I am putting this out there for information purposes. It is important to me that you, my friends, know and understand MS so that you can donate to help find a cure.
Any cure that is found now will not help my husband. He has permanent damage to his central nervous system. My hope and prayer is that no one else would ever have to experience what he and we have experienced.
Forrest was diagnosed 11 years ago, and we've had to watch as MS has taken his abilities to do everything. He is now in bed all but about 3-4 hours a week. MS is a progressive, debilitating disease.
Imagine your strong, capable husband declining day by day. Imagine him going from caring for you and your family, to you and your children caring for him, taking care of his most basic needs. It affects every area of his life.
Imagine not being able to leave your house because you are too weak to sit in a wheel chair. Imagine not being able to get yourself a glass of water, not being able to walk across the room and hug your child or wife.
Imagine being so weak that you cannot lift a glass of water or move your legs in bed. Imagine being so weak and uncoordinated that you cannot dress yourself, comb your hair or brush your teeth. Imagine your thinking being so foggy that you cannot think of the word you want to say. Imagine not being able to breathe if you laugh. Imagine crying or laughing uncontrollably and without reason.
There are many other issues and body systems that are damaged and do not function normally for Forrest. MS will not kill those affected by it. It just lingers and robs.
Please donate to find a cure. Please help stop MS. And, for Forrest, please pray. Unless God chooses to heal Forrest, he will continue to decline. We believe in the power of prayer, and we know that God can heal him if He so chooses.
Forrest is such a blessing to us. His attitude and spirit are so sweet. He encourages everyone he speaks with and we are grateful that God has allowed our lives to be touched by his.
Dear Hubby had been struggling with fatigue and seemed to have some issues with his knee. The previous year, on our annual trip, he'd barely made the mile and a half "hike" (which was more of a walk on even trails) called Lover's Leap. Toward the end of the trail there was a natural staircase composed of huge boulders. Our tiny three year old was strapped onto Dear Hubby's back and I watched at the bottom of the staircase with the other three children and watched him wave back and forth. He seemed unsteady and terribly weak. It scared me. I took our baby girl from him, strapped her on my back and all of us helped Dear Hubby off the trail. We finally made it back to the vehicle. I questioned him asking, What was that all about? He had no answers and just said, I don't know what's up, I'm just so weak. That was also the trip where he fell while walking along a rocky river bank. Strange.
So in 1999, we were determined to still make our annual trip, but instead of our usual hikes, we were focusing on scenic drives. We had learned to adapt to this weird weakness. Dear Hubby was still able to do a tiny bit of walking, as long as he had places to rest. As we drove through the mountains, we spotted a new state park we'd never seen, and we decided to check it out. We drove around inside the park, and one of the kids spotted a sign for a trail to the "natural bridge". We discussed what that meant, and they wanted to see it. Upon closer inspection, the "hike" to the natural bridge was just 1/3 of a mile. This trail was handicapped accessible, wide paths, paved with peat gravel. It seemed pretty easy and Dear Hubby said he would try. We started on the trail, and watched in horror as he moved from tree to tree, leaning on each one for support. Still within sight of the vehicle but still on the trail, there was a bench and he threw himself on it. He couldn't do it. He couldn't make the 1/3 of a mile trek to the natural bridge. He suggested that me and the kids go ahead, see the natural bridge and return. He would wait there. I told the family, No, if dad can't go, let's not do it. This is a family vacation.
What I didn't say was that I was terrified. Something was seriously wrong with my 38 year old husband. We got back in the vehicle and drove back to dad's. The rest of the trip, we drove scenic drives and didn't talk about what had happened.
I came home and got on the computer, searched in the internet and found very, very little medical information. Remember in 1999, the internet wasn't anything like it is today. I took an afternoon and visited our local library. I sat down with medical reference books. I couldn't check them out, so I sat and read in our library. I followed the information, and very quickly discovered that all of my Dear Hubby's "issues" seemed to be neurological. Searching through illnesses and diseases that cause neurological symptoms, I narrowed it down to one disease. And, I as read, I saw my husband in that book. Things began to make sense. Things we'd never related to his "weakness". The eye trouble, the weakness, the bladder issues, the uncoordinated movements, everything.
The Monster began to emerge from the hazy fog, and it had a name. Multiple Sclerosis.
I knew then, that my sweet husband, who had been ignoring my advice to see a Dr. HAD to make an appointment immediately. I went home, and shared my findings. I told my sweet husband that I thought he had MS. I shared with him all the signs and symptoms. We discussed it and he agreed. It sounded very much like MS.
The feeling that day? I felt good in finding out there was a name to this Monster. Over the next few days, the realization sunk in. I knew that MS wouldn't kill my sweet husband, but I began to think back over what I'd read. Progression. No cure. Disabling. I began to put pressure on him to go to the Dr. He refused. Why should he? He knew what it was now. What more could a Dr. tell him? Was there a cure? No. Then why bother?
Over the next few months, we had many "discussions" about this. I nagged and cried, I worried and fretted. Finally, in March of 2000, we got the official diagnosis.
This month marks 11 years since that day we sat in the doctors office and were told that MS was probable. No one wants to say it right away. Although, by the time we saw the doctor, my sweet husband was already very progressed. He had lost muscle mass in his back, arms, legs, shoulders. A trained eye could see what we had overlooked for so long.
This morning we were talking about his diagnosis. I asked him if he could remember what he was feeling that day. He said remembered feeling just fine. He thought to himself, hey it's MS. We know what it is. If this is as bad as it gets, I can handle it.
I suppose, since the doctor hadn't made a firm diagnosis, he didn't go into what lay ahead for my hubby. He referred us to a neurologist and wanted hubby to get an MRI and a spinal tap for a firm diagnosis. But we all knew the truth.
What I felt, I really didn't discuss much. It takes time for all of us to process the information. I assumed that my hubby knew what a diagnosis of MS meant. I did. I had read it all. I knew. And, maybe that is why I panicked. I thought he knew. He was handling it well. But he didn't know the entire truth.
This is National Multiple Sclerosis Awareness Week.
Here is what I put on Facebook this week:
A lot of people do not understand MS and what it does. Please visit the National MS Society website and read about MS. There are different types, and Forrest now has a progressive form of MS.
I am putting this out there for information purposes. It is important to me that you, my friends, know and understand MS so that you can donate to help find a cure.
Any cure that is found now will not help my husband. He has permanent damage to his central nervous system. My hope and prayer is that no one else would ever have to experience what he and we have experienced.
Forrest was diagnosed 11 years ago, and we've had to watch as MS has taken his abilities to do everything. He is now in bed all but about 3-4 hours a week. MS is a progressive, debilitating disease.
Imagine your strong, capable husband declining day by day. Imagine him going from caring for you and your family, to you and your children caring for him, taking care of his most basic needs. It affects every area of his life.
Imagine not being able to leave your house because you are too weak to sit in a wheel chair. Imagine not being able to get yourself a glass of water, not being able to walk across the room and hug your child or wife.
Imagine being so weak that you cannot lift a glass of water or move your legs in bed. Imagine being so weak and uncoordinated that you cannot dress yourself, comb your hair or brush your teeth. Imagine your thinking being so foggy that you cannot think of the word you want to say. Imagine not being able to breathe if you laugh. Imagine crying or laughing uncontrollably and without reason.
There are many other issues and body systems that are damaged and do not function normally for Forrest. MS will not kill those affected by it. It just lingers and robs.
Please donate to find a cure. Please help stop MS. And, for Forrest, please pray. Unless God chooses to heal Forrest, he will continue to decline. We believe in the power of prayer, and we know that God can heal him if He so chooses.
Forrest is such a blessing to us. His attitude and spirit are so sweet. He encourages everyone he speaks with and we are grateful that God has allowed our lives to be touched by his.
Sunday, March 20, 2011
Emily Dickinson
If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.
Friday, March 18, 2011
Keeping it in balance
One thing about the care giving life that is SO difficult is finding balance. I have tendency to fixate on things.
I fixate on:
care giving activities
computer time
sewing
cooking
organizing
visiting with friends
watching t.v. or movies
It's like I get tunnel vision and take things out of balance. If I decide I want to watch a movie, sometimes I'll go over board and think: three movies would be more fun.
Or I'll decide to clean out a closet and then start going crazy and organize three closets, dresser drawers, the pantry and paperwork.
Or instead of just inviting one couple over for dessert, I'll call several friends over and spread them out to visit over the next week.
The trouble with this is that I end up exhausted.
So, I'm learning that I don't have to go overboard with things. I can take one thing at a time. I can slowly go through the house/closets/drawers and clean a bit. I can watch a movie and turn it off and move on. I can enjoy a visit with a friend and wait a week to invite another friend over next week. I don't have to do everything all at once.
I need to strive for balance.....
There is no need to loose perspective and go all crazy, now is there??
Change doesn't happen overnight, but I'm seeing some improvement. I'm writing out my priorities and seeing what it is that is MOST important.
1. Taking care of my Dear Hubby.
2. Caring for my Dear Younger Daughter, schooling her and making sure her needs are met.
3. Keeping up with basic household needs: laundry, cooking, cleaning, shopping.
4. Spending time with friends and loved ones. Getting built back up emotionally and mentally so I can go on.
5. Plan for the long term, but focus on the short term.
6. Take time to relax and enjoy our time together. Who knows how long Dear Hubby and I have together. I don't want to have regrets.
I fixate on:
care giving activities
computer time
sewing
cooking
organizing
visiting with friends
watching t.v. or movies
It's like I get tunnel vision and take things out of balance. If I decide I want to watch a movie, sometimes I'll go over board and think: three movies would be more fun.
Or I'll decide to clean out a closet and then start going crazy and organize three closets, dresser drawers, the pantry and paperwork.
Or instead of just inviting one couple over for dessert, I'll call several friends over and spread them out to visit over the next week.
The trouble with this is that I end up exhausted.
So, I'm learning that I don't have to go overboard with things. I can take one thing at a time. I can slowly go through the house/closets/drawers and clean a bit. I can watch a movie and turn it off and move on. I can enjoy a visit with a friend and wait a week to invite another friend over next week. I don't have to do everything all at once.
I need to strive for balance.....
There is no need to loose perspective and go all crazy, now is there??
Change doesn't happen overnight, but I'm seeing some improvement. I'm writing out my priorities and seeing what it is that is MOST important.
1. Taking care of my Dear Hubby.
2. Caring for my Dear Younger Daughter, schooling her and making sure her needs are met.
3. Keeping up with basic household needs: laundry, cooking, cleaning, shopping.
4. Spending time with friends and loved ones. Getting built back up emotionally and mentally so I can go on.
5. Plan for the long term, but focus on the short term.
6. Take time to relax and enjoy our time together. Who knows how long Dear Hubby and I have together. I don't want to have regrets.
Friday, March 11, 2011
Subscribe and Save
Just found this today: Amazon Subscribe and Save.
Check it out. For those of us who can't get out as much as we'd like, wouldn't it be wonderful to have things delivered to your door? No more lugging big packages and heavy items from store shelves to checkout to the vehicle and into the house.
Today, I placed orders for toilet paper, paper towels, laundry soap and softener to be delivered regularly.
You pick your items, in the sizes you want (2 pack, 4 pack, 6 pack, etc.), pick the frequency of delivery (1 month, 2 month, 3 month, 6 month) and place your order.
Double check sizes and prices to make sure you really are getting a good deal.
I'm very excited and will continue checking for items as needed to add to my automatic shipping schedule.
While computers, cell phones and blue ray players mess up and drive me crazy at times, I really am grateful for technology!
Check it out. For those of us who can't get out as much as we'd like, wouldn't it be wonderful to have things delivered to your door? No more lugging big packages and heavy items from store shelves to checkout to the vehicle and into the house.
Today, I placed orders for toilet paper, paper towels, laundry soap and softener to be delivered regularly.
You pick your items, in the sizes you want (2 pack, 4 pack, 6 pack, etc.), pick the frequency of delivery (1 month, 2 month, 3 month, 6 month) and place your order.
Double check sizes and prices to make sure you really are getting a good deal.
I'm very excited and will continue checking for items as needed to add to my automatic shipping schedule.
While computers, cell phones and blue ray players mess up and drive me crazy at times, I really am grateful for technology!
Monday, March 7, 2011
Too many sickies.....
Our younger son, who still lives at home has been running a fever since Friday. He went to the "Ready Clinic" on Saturday, to get a doctor's excuse to miss work. He has to be back at work on Tuesday, but alas, he is still sick. So today, he went to see his PCP. It's official, he has the flu. He begins Tamiflu as soon as we can find a pharmacy that carries it. It's in high demand here.....
And this morning, our youngest daughter woke up running a temp (101.5). And, now she has an appointment tomorrow afternoon.
Our oldest daughter has decided to move to another location, as prevention. She has a tendency for bronchitis and pneumonia and doesn't want to get sick. On the plus side, she will be making store runs for us, keeping the pantry stocked so that I can cook some yummy stuff for the family.
The "kids" are in isolation, but since I'm caring for them both, chances are pretty good that I will get this. And, if I do, I'm hoping my son will be able to care for me. Maybe I won't get it. That sometimes happens. Right?
And, we're all praying that Dear Husband doesn't get it. He is in a weakened condition. It could very easily go south for him.
And, you're probably thinking, Why doesn't he take the flu vaccine?
He doesn't because there is a chance he could get the flu from the shot, and he can't run a temp or things get really bad. Flu vaccines aren't all that accurate either. They only prevent what the CDC thinks may run through the population that year. It can't prevent every type of flu. We take our chances.
So if you think about us this week, please pray.
And this morning, our youngest daughter woke up running a temp (101.5). And, now she has an appointment tomorrow afternoon.
Our oldest daughter has decided to move to another location, as prevention. She has a tendency for bronchitis and pneumonia and doesn't want to get sick. On the plus side, she will be making store runs for us, keeping the pantry stocked so that I can cook some yummy stuff for the family.
The "kids" are in isolation, but since I'm caring for them both, chances are pretty good that I will get this. And, if I do, I'm hoping my son will be able to care for me. Maybe I won't get it. That sometimes happens. Right?
And, we're all praying that Dear Husband doesn't get it. He is in a weakened condition. It could very easily go south for him.
And, you're probably thinking, Why doesn't he take the flu vaccine?
He doesn't because there is a chance he could get the flu from the shot, and he can't run a temp or things get really bad. Flu vaccines aren't all that accurate either. They only prevent what the CDC thinks may run through the population that year. It can't prevent every type of flu. We take our chances.
So if you think about us this week, please pray.
Sunday, March 6, 2011
Progressions
We've seen them over the past few weeks. My sweet husband is slowly loosing use of his hands. He's been needing help with feeding toward the end of the meal for about a year or so. But lately, he can't hold a utensil in his hands. He's even having trouble feeding himself "finger foods".
It's been a challenge as we find our rhythm. I don't want to rush him and poke food in his mouth faster than he is comfortable with or can handle, but on the other hand, I don't want him sitting and waiting on me for another bite.
And, then there are the spills. I get food on his mouth, his face, his shirt. It's a mess.
But, as with anything, practice makes perfect.
So another progression, more adjustments, the new normal.....and we find ourselves doing what it takes to live.
He gives up more freedom, I take on more responsibility, give and take, test and trial.
I sure love him.....and I would do anything for him.
It's been a challenge as we find our rhythm. I don't want to rush him and poke food in his mouth faster than he is comfortable with or can handle, but on the other hand, I don't want him sitting and waiting on me for another bite.
And, then there are the spills. I get food on his mouth, his face, his shirt. It's a mess.
But, as with anything, practice makes perfect.
So another progression, more adjustments, the new normal.....and we find ourselves doing what it takes to live.
He gives up more freedom, I take on more responsibility, give and take, test and trial.
I sure love him.....and I would do anything for him.
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