Tag Archives: Fibromyalgia

Working Hard

country living

I’ve had a few people ask how I’ve been and what I’ve been doing.  In between all the problems I have been standing strong on getting healthier.

I began the journey March 17, 2014 by writing down everything I eat and keeping track of the points so I don’t overeat.  The opportunity to walk inside at the church opened up and I went Mondays and Thursdays.  I started out walking eight or nine laps around the new worship center in about fifteen minutes.  When I first started walking I wanted to throw up because it made me feel so horrible.  This fibromyalgia and other health issues had me down for over fifteen years, so I have a lot of work to do.

It’s now been four months and I’m glad to say I’m seventeen pounds less than I was at the start of this adventure and I’m now walking twelve laps in twenty-five minutes  twice a week.  I’m feeling stronger each day.  The fatigue still sets in around lap four, but I turn the praise music up and lift my hands to God and pray for the strength to continue.  My right knee hasn’t been going out of place anymore, praise God.

I’m not doing this to look great.  Those days have long since passed me by.  I’m doing this to be healthy.  I live alone and it’s terrifying when I physically can’t do what I need to do.  I’m not saying that has resolved itself, but at least I know I’m working on it.  I know I have to take it slow and easy or wind up in a major fibromyalgia flare up.  I did that early on and it was wicked.

So I’ve been isolated from people unless I’m in the sound room at church or out and about doing errands.  I have a couple friends I see maybe once a month or so, but most have forgotten about me.  (Out of sight, out of mind, I guess)

I’ve had a couple of health scares since I started, but thankfully they’ve not become issues.  I had to stop taking my asthma medication, singulair, because it was colliding with menopause and making me very agitated and full of rage. The big problem is I can’t take anything else for my asthma, but thankfully God send a gentleman to cut my lawn so I won’t have a major asthma attack.

I had an ultrasound on my neck because I was having weird symptoms and since I had the three aneurysms in my abdomen I am more likely to get one somewhere else.  Thankfully the symptoms went away and the ultrasound was normal.

So in summary, I’m working hard at getting healthy.  I’m feeling stronger.  I’m still lonely and wishing that would change and God would send the husband I’ve been longing for, but I’m losing hope with each passing day.  Financially I’m drowning, but all the doors closed on the plans I had to get out of my home so I’m stuck here for now.

Today I’m grateful for:

1.  I’ve stayed committed to walking even when it made me feel like I wanted to die, and now I’m getting a little stronger.

2.  The gentleman cut my lawn yesterday so I wouldn’t have to.

3.  I’m not perfect every day with my lifestyle changes, but I don’t stay stuck in my mistakes.  I get back on track the next meal or the next day so it doesn’t snowball into a disaster.

 

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Harsh Realities

I’m sad, but at peace today.

All I ever wanted was a husband to love me and a home to call my own.  Well the husband never came.  The home isn’t exactly what I had in mind, but it’s been mine for the past thirteen years.

Sadly I’ve had to take a really hard look at the reality that is my life, and admit that physically and financially I can no longer stay in my home that I’ve worked so hard to keep.  I thought five years ago when I started dating again, after many years of being too scared of being hurt, maybe I’d find someone to love me that would be here for me and be my helpmate.  I’ve watched many people find someone and get married in those five years, but all I found was more pain and hurt than ever before.  So time to face reality.  I’m alone.  I’m sick.  I’m terrified.  And I need to take care of me since I have no one else.

These past few weeks have been extremely emotional.  I know what I must do and I’ve begun the legwork of looking for another place and selling mine.  I’ve told my neighbors not to be surprised when they see the For Sale sign go up.  I doubt this will happen in the next few weeks, but I’m hoping by the brunt of winter that I will be in a new place with Morriss.

My heart is so heavy this morning for all the things that could have been, that aren’t.  I truly thought I’d found the love of my life and we would make a life together.  Instead I was lied to, and strung along until my heart feels like it can no longer beat without me telling it to.  I thought it would heal faster, but maybe it never will.  And now to see that I’m sinking financially and in so much debt from trying to keep this house going and knowing that I will have to go into senior/subsidized housing  I just feel like such a total failure.

Add to all that my health.  I’ve been noticing  many things I can no longer do and such major fatigue I can’t get anything done except survival tasks like grocery store, dishes, doctor appointments, etc.  I’ve been hoping that walking two days a week would strengthen me, and I’m sure it is to some degree, but I also realize the fibromyalgia has a strangle hold on my body and rules my life.

So as sad as I am over the difficult choices I must make, I’m at peace with the decision to sell my home because I know in my heart I can no longer keep up with it financially or physically.  I know in an apartment I only need to take care of me and Morriss.  I know I will have more money so I will be able to work on paying down all the debt I’ve created trying to keep this house going.

Today I’m grateful for:

1.  Coffee.

2.  I have left overs for dinner.

3.  The ability to make tough decisions.

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15 Years Ago

It was Friday, April 13, 1999.  (YES, FRIDAY THE 13TH and tax day since the 15th fell on Sunday)  Not a great day for surgery of any kind if you ask my opinion.  But it was the only opening available when they found the abdominal aortic aneurysms in my stomach.  I was only given three weeks to live and a 30% chance of surviving the massive bypass operation. 

Had I known then what I know now I’m not sure if I would have gone through with the surgery.  Had I known that I would  lose my right kidney six months later.  Had I known I would live in insufferable pain for the rest of my life from fibromyalgia and chronic fatigue syndrome and a host of other health issues stemming from the surgeries.  Had I known….

Had I known and not gone through with the surgery I might have missed many good moments amidst the pain.  I still have days that are so terribly hard to endure that I wish I could go back in time and not go through the surgery and all the pain that has followed, but then I would have missed
-Many prison ministry meetings that left me more blessed than the inmates.
-Finding Bethany Wesleyan Church and the amazing pastors and people that serve God and attend there.
-Friends that meant the world to me coming and going in and out of my life.
-Writing.
-Buddy and Morriss.
-Meeting the love of my life.  (I know it  will never work out because we met too late and he already has other committments.   I will forever miss the way he made me feel alive and the look of love I saw in his eyes for me even though the time was brief)
-Amazing books I’ve read by Melody Carlson, Ryan Winfield, Nicholas Sparks, Michael Baron and Steven Manchester.
-The amazing year of blogging I did last year and all the neat people I’ve come across here and the awards I was given by others. 
-My friend James who made me enjoy science fiction.
– The amazing blogger Shaun, who can write about anything and make it interesting, who taught me how to skype so I could hear his scottish accent and freak out the cat.
-All the fibromyalgia people I’ve met online and in person.  We truly are not suffering alone.
-All the tech stuff I’ve learned in the past 15 years through working in different sound rooms at different churches and my own curiousity. 

So I guess my point is, I’m glad I didn’t know about all the hard times, pain and suffering that would be in every one of my future days because I would have missed some amazing moments. 

Today I’m grateful for:
1.  I had a nice relaxing day and a nap.
2.  An awesome church.
3.  I’m alive and able to write today.

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Slight Detour

It’s been an awful couple of days.  When I overdo it and push my body it has a couple of new ways to fight back and force me to take it easy.

I didn’t do all that much but apparently it was far too much.  It was Sunday.  I was in the sound room for the second service so a little over an hour there.  I came home, had lunch, did a load of laundry and left it in the dryer before meeting my mom and sister for an early dinner.  I was out about 2.5 hours.  Stopped home for a half hour before going to a meeting at church for 2 hours. 

Looks like a grand total of 5.5 hours split up throughout the day.  By Monday morning I was nauseous, dizzy, achy, and had a pounding headache.  I forced myself to walk 4 laps at the church before I came home, put on my nightgown and passed out on the couch with chills on top of everything else. 

I spent Monday, Tuesday and Wednesday on the couch  wishing I could just die I felt so horrible.  I thought maybe I had the stomach virus that was going around the church, but I never actually got sick. 

Looking back over the past month I saw I felt exactly the same way after overdoing it last month.  So apparently this is my body’s way of retaliating and making me rest after I overdo it.  Uggghhh! 

Life with fibromyalgia is never uniform.  Everyday is a new symptom and new learning experience.

Today I’m grateful for:
1.  I was able to walk my 9 laps this morning.
2.  I’m feeling a bit better, still weak, but at least not achy and all the other stuff.
3.  Morriss watched over me while I wasn’t feeling well.

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Morriss Mondays

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It has been a very tough week here and I am exhausted.  We had a major nor’easter hit us with almost two feet of snow.  Mom cried herself to sleep a couple of times because she was in so much pain from shoveling.  I had a very difficult time keeping an eye on mom while she was outside shoveling.

This is my view from the supervisory point (the window).  As you can see my view is very limited.  Which makes me worry.  If I can’t keep an eye on mom I worry if she’s ok or not.  I spent many hours in that window in the past week.

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I know mom is very stressed and in a lot of pain these days.  I’ve heard her on the phone asking people about the roof and an ice jam up there and what to do if anything.  Mom’s been going out the back door to keep the propane vent on the side of the house clear of snow during all of this too and a piece along the bottom of the door fell off.  She called about that and was told she’ll have to wait for the weather to break and the snow to go away.  In the meantime she has towels there but the cold air is rushing in from that centimeter gap that is now open.  I know mom is concerned about that and a lot of other things.

Add to all that mom has been in so much pain.  She isn’t sleeping at night because the pain is so bad.  I’ve been trying to be more loving and staying close to mom to let her know that I’m here and I love her.

Yesterday mom told me she had to make a decision whether to go to church or to the grocery store because she was in too much pain and didn’t have enough energy to do both.  I know mom was very sad that she couldn’t get to church for yet another week, but I admire her strength to take care of us and go to the grocery store even though she was moving really slow and it looked like it was very painful for her to even walk.

When mom came home from the store and got the groceries inside she started crying and told me she was so very tired and in so much pain she didn’t even want to keep living anymore.  I started praying kitty prayers for mom and in between naps I’m praying real hard that mom can get out of this cycle of pain and that our home will be ok and mom will be able to continue taking care of us.  Please pray for us.  It’s been really hard here.

Mom’s disease seems to be getting worse and worse with each passing day.  She sleeps less and less.  The pain is getting worse and worse.  Her brain seems more foggy than normal and she is having a hard time doing the normal every day things.  I’ve had to remind her a couple times that I’m hungry.  Sometimes I’ll just eat the hard food she leaves out for me and not bother her because she is in so much pain.

I hate this disease called fibromyalgia.  No one deserves to suffer like this.  Especially not mom.  She tries so hard to help others and be a good friend and yet I’m watching her deal with all this stress all alone.

Today I’m grateful for:

1.  Mom finally slept a little this afternoon on the couch.

2.  Mom is taking care of me even though she feels awful.

3.  Mom made sure I’d have food.

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Know Your Limits

One lesson I’ve learned over the past fourteen years of having fibromyalgia and chronic fatigue syndrome is to know my limits.

I need to carefully listen to my body each day and not overdo it to the point where I’m bedridden.  I think I’ve learned that pretty well.

As for driving in the snow.  I’ve stopped doing that at all since I’ve moved to where I live now.  Partly because my car is so light and the hills are so big.  But mostly because I know my pain level makes my reflexes slower than they need to be for hazardous conditions.  And when I get stressed my pain level increases, and when my pain level increases my concentration gets replaced by overwhelming fatigue and  brain fog.  Not a great combination for driving in the snow.

All that said, I had to cancel my plans tonight to go out with my friend and her family for Christmas Eve because they were calling for snow showers.  I felt awful cancelling because I had to cancel last year for the same reason.  I know they think I’m crazy, but I have to do what’s best for me.  I don’t want to put myself and others in danger on the roads.

I had a pity party for just a moment because I’m alone on Christmas Eve, but I turned that around and decided to enjoy my day with Morriss.  I put on the infared heater (that saves on heat but raises your electric bill sky high) that throws the most bone warming heat I’ve ever felt and took a much needed nap on the couch.  Then I had a sandwich for dinner.  And afterward I cleaned and froze the grapes I bought yesterday and cut up the strawberries.  And now I’m ending my night watching “It’s a Wonderful Life” before going to bed and reading a bit.  All in all a nice quiet day.

Today I’m grateful for:

1.  I made a wise decision to stay home.

2.  I rested well this afternoon.

3.  I decided not to dwell on being alone and instead made the best of my day.

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Feeling Awful

When I left the house this morning Morriss’ tail was sticking out from under the couch, it was thundering, and the heavens opened up with torrential downpours. It was 8:00 am and I needed to be in the soundroom at church. I was feeling so awful I wanted to die. I barely slept last night and my pain level and nausea was at an all time high. Before I walked out the door I was eating saltine crackers to settle my stomach. Driving up to church the water was rushing down the hill and making it very difficult to get my car up the hill. That made me nervous.

Thankfully I was on the side stage cameras and one is not working so I didn’t have to do too much. I couldn’t wait to get back home to the couch and my ice pack. My shoulder is killing me again because I took two anti-depressants in two weeks. I can only take one a month or it’s a major problem. Uggghhh!

When my mom called asking if I was meeting her and my sister for dinner today, I said, “No.” Of course she still doesn’t get that I’m not feeling well and why. I’ve had fibromyalgia for 14 years and still most of the people in my life don’t get it, nor do they want to. That’s why I just spend a lot of time alone these days. I’m too tired to explain myself and my illness when no one listens anyway, and they forget everything as soon as you tell them.

I’ve been in a real negative tone lately. I don’t like it. But what do you do when you continually feel awful day after day after day after day. I’m getting very worn down and tired. I could tell my doctor was concerned about me by the way he looked at me. I could see the compassion, empathy, and concern in his eyes. We’re the same age, but I feel so much older from fighting this disease for so long.

Today I’m grateful for:

1. I don’t have to try to work like this. I’d never make it.

2. Writing, writing, writing.

3. I had left overs again today so I didn’t have to cook.

4. I did manage to take an awesome 2 hour nap this afternoon.

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