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WILLIE AND BAILEY
WILLIE AND BAILEY

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10 THINGS THAT SURPRISED ME ABOUT FIBROMYALGIA

10 THINGS THAT SURPRISED ME ABOUT FIBROMYALGIA

 

The 10 Surprising things I learned about Fibromyalgia
10 Things that Surprised me About Fibromyalgia – It’s not all bad.

Hi Everyone,

I was diagnosed with Fibromyalgia almost 15 years ago now, and as soon as I was diagnosed I went online to research everything I could find.  What I found was not a lot of information.  Unlike now; then, there really wasn’t much on this disease at all.

Every morning I put on my face and didn’t let anybody know how bad it was. There were days I was so tired I honestly do not know how I coped. Every day I laughed with my coworkers, giggled with my kids, kept up with my friends, and was a good partner to my husband.

The literature that I found on the disease really did not give me an outlook on what the future would be like. There was nothing in anything that I read to let me know that gradually over time it would get worse and worse, that every day would become a struggle, that my house would be a mess on a constant basis, and that there were some days I barely made it out of bed.

And, the literature never told me a lot of the things that I’m going to tell you about now. The following 10 things that probably surprised me the most. Little did I know, that within 11 years of being diagnosed I would no longer be working as a result of Conversion Disorder which super-sized my Fibro; that falling up or downstairs would become normal, that every morning I would need an hour and a half just to be able to push the pain back enough that I would be able to function for the day.

2 years later, I would have to give up driving as Fibro was affecting my eyesight more and more. My life completely changed 4 years ago, I became what they call chronically ill, as the Conversion Disorder tripped me into a permanent Fibro flare. Things that at one time had seemed so easy were now things that I struggled to manage every day. I need a cane to keep my balance, and a walker now and again when I get really bad. That a wheelchair would be needed if I was travelling or doing something as simple as going to the mall

So here we go, here is my list of the 10 things that surprised me because they either weren’t in the literature of the time, or they were considered to be rare symptoms of Fibromyalgia.  A couple of good things are mixed in as well, nothing could be ALL bad.

FATIGUE 

I did not know that it was possible to be so tired, that even when you woke up in the morning you would be exhausted just going to the bathroom. I didn’t know that trying to do my housework or even getting dressed would tire me out so badly that my legs would literally give out. How is it that you can be so tired that even breathing feels like a chore.  Then when it’s time to sleep, you can’t, you might be able to for 45 minutes or so but then you have to get up move around because the pain is so bad.  Broken nights contribute heavily to the fatigue, but even on rare occasions when I do sleep through the night, I wake up exhausted.  I would never have believed that taking a shower could become a major undertaking and that I would be so tired afterwards that it could take up to two hours for me to be able to get up and function.

FIBRO FOG 

44 Memes That Nail What It’s Like to Have Fibromyalgia:

 

Although the things that I read told me about fibro fog, it is not really understandable until you’re going through it; that you would forget what you were speaking about in the middle of a sentence, that you would forget the name of your husband or child, that words that should come easily to you, don’t, and that stuttering would become a way of life as you struggle to find the words.

Of all the things associated with Fibromyalgia, this is the one that I find hardest to deal with. How embarrassing to forget your best friend’s name or where she lives or her phone number; how embarrassing to be talking to your husband of 26 years and not be able to recall his name; how devastating to be speaking to your child and not able to recall their name. On those days when it is really bad, it hurts me so much to know that at some point I will hurt somebody’s feelings by not being able to remember what they are called.

JOURNALING

This one actually surprised me a lot, who knew that journaling every day would be able to give me a look back at how I have progressed to this time. My tip to anyone who is suffering from chronic illness of any kind, keep a journal it will give you the opportunity to remember the good days, the great days, and the wonderful days.

It will give you the opportunity to look back on those very black days when depression and anxiety had you so down that you actually believed it would be better if you weren’t here. It will make you remember the reasons that it’s better that you are here.

In my journal, I write down quotes that I find inspiring, things that I really want to remember, and who I talked to each day. I write down project ideas, recipe ideas, think of ways to make my housekeeping easier, for heaven’s sake it takes me 45 minutes just to make the bed. The journal is like my memory for those days when it isn’t very good.

LONELINESS

This one I guess I should have expected, that one by one the friends would all drop away; when I would have to cancel on them at the last-minute or just flat-out say no. It seems so funny to me I have friends all over the world online that I speak to at least a couple of times a week but that those that were closest to me are no longer there. I have made some very strong friendships online but all of my friends that live close by I never see any more.

THE ITCH

In all of the literature that I read on Fibromyalgia, they mentioned the possibility of being itchy but that it was a mild symptom and not everyone has it. They lied. Sometimes the itching is so bad that I literally cut myself with my nails from scratching. It does not matter how much cream I use or any of the other itching remedies that everyone recommends, the itch is unrelenting. There is not a time when some part or other is not itching. I have learned to be careful with just how much I scratch.

PEOPLE

I am surprised all the time by the bad manners of people and then I am pleasantly surprised at the kindness of others. The number of times that I have been walking towards the door and instead of maybe helping me out by holding it for me the person just lets it go even though they have seen me coming. On the other hand, there are wonderful people who not only see me coming that then hold the door for me or offer to help me in some way but say something to give me a laugh or to make me smile.

For instance, I was at the nail salon yesterday to get my pedicure (I can no longer reach my toes without losing my balance and getting dizzy even when sitting down), there were the most wonderful lady and her husband also having a pedicure. She was about to turn 80 and he was getting very close to 90 she literally had me in hysterics the whole time we were there. I once wrote a post about kindness and how it was becoming a lost virtue; I can tell you with absolute certainty that not all the kindness is gone, it’s just something that the older generation is more inclined towards than the younger.

The other thing about people is they all think they have the answer or the cure for my problem.  The fact that I tell them that their cures and suggestions are all things I’ve already tried doesn’t seem to faze them, they are convinced that there must be something that I can do that will stop the disease in its tracks, or they plain just don’t believe you could have something that can’t be fixed.

fibromyalgia meme: normal person's pain scale. spoonie's/chronically ill person's pain scale.:

 

BODY TEMP

Reading up on Fibromyalgia, I discovered that I was going to have problems with my body temp; since I was already going through menopause this was not good news. I had already gone through the night sweats and the hot flashes were still running me down, but then along comes Fibromyalgia and as it progressed the temperature swings became worse. When I was cold, I was freezing and when I was hot it was hard to breathe. I would be literally dripping from the ends of my hair during the hot flashes amplified by Fibromyalgia; and 3 or 4 blankets plus a couple of sweaters could not get me warm, because being cold was also amplified by Fibromyalgia. I am mostly past the hot flashes now I only get them now and again. For me, it is mostly the cold that takes over and that I have to deal with, but every now and again I’ll be lying in bed and the furnace goes on and it’s not a night sweat and it’s not a hot flash, it feels entirely different, the heat is at times unbearable almost like you are in one of those places with super high humidity and heat.

TRADING OFF 

It has become a game of trade-off; if I do this today how little am I going to get done tomorrow. Should I do the dusting knowing that tomorrow the only thing I might be able to do is shower, or should I leave the dusting for today and hopefully be able to put a meal on the table and play with the dogs and who knows maybe just maybe I might be able to do a load of laundry as well. See what I mean, the trade-off every day; what can I do today that won’t incapacitate me for tomorrow. It is a constant balancing act.

ONLINE FRIENDS 

I think one of the biggest surprises for me was just how many people with chronic illness I would meet online. How meeting them made me feel not quite so alone. Talking to others and discovering how they spent their days, the compromises that they made; helped me to figure out my own system for getting things done. I have talked to so many that are much worse off than I am and yet our spirits are still high and each and every one of us still hopes that in the end, the medical establishment will eventually find a way to help and maybe even cure us.

THE GUILT

Nobody understands just how guilty you feel not being able to do the things that you used to. For instance, it has become normal for my house to be a mess, my bad days far outweigh my good days. I know that my floor needs to be washed but if I do that then I am literally going to be laid up for two or three days to recover from it.

The same holds true if I attempt the dusting, the vacuuming, the bathrooms, the laundry, just about any household chore. I have a cleaning schedule that I made up that allows for latitude and how much gets done in a day. Some days I have to stay almost motionless so I can make dinner that night.

As one might expect, the guilt of sitting down on my rear end all day and not getting done even a third or a quarter of what you had planned for that day is so weighty that you feel like you have an elephant or gorilla sitting on your shoulder.

A good wife and Mum is supposed to keep the house clean (and yes, I know how old-fashioned that sounds but it was the way that I was brought up), is supposed to cook the meal every night, is supposed to be the one being leaned on when it is needed, not the other way around. Thank God for my husband, he is now and has always been the tower of strength I need when the guilt and pain overwhelm me, and he steps in and takes up whatever the challenge is.  But, that also makes me feel guilty after he has worked all day and then has to come home sometimes to a wife that really cannot do anything some days.

WRAPPING IT UP

If there was one thing that I could say to people who do not suffer from a chronic illness; it would be to tell them that this disease is real. We are not faking, we are not being lazy, we are not just trying to get out of working, we have real and in some cases horrible, horrible pain.  You would be amazed how many people think and say that to our faces.

I would also like you to know that I am not ignoring you when you tell me that all I need is to get a little more exercise or get out of the house more or be more sociable. I am simply not willing to listen to people who have no idea what it’s like; so have no concept of how many times we have heard these same things over and over, even from family members at times.

I think it would surprise you to know just how much we force ourselves into appearing normal so that people don’t know how much pain we are in. We put a smile on every morning hoping that we truly can hide just how badly we feel, but that smile is wiped from our face the moment we step in our door. We do not want your sympathy or your pity, we are warriors and we push ourselves every day to be the best wives, mothers, coworkers, and friends that we can be. We are stronger than you could possibly imagine because every day we have to struggle to get through the day knowing that somebody somewhere thinks we are a fraud.

10 Things about Fibromyalgia that Surprised Me
The 10 most Surprising Things about Fibromyalgia – It’s not all bad news

 

 

Thank God for Pinterest and their memes, at times they are the only thing that keeps me from crying like a baby.

 

 

THINGS I LOVE, USE, OR  MAKE

Today I would like to tell you a little bit about why I am building a Fairy Garden.  I have seen them on Pinterest over the past few years and I have fallen in love with the idea.  From the time I was little, I have always been fascinated by stories of elves, fairies, gnomes and pretty much anything that has to do with fantasy characters.  As I grew up I still loved them or at least the idea of them.  I almost wrote a book once about a wonderful fairyland that had all of the above in it as well as unicorns, mastodons, and saber-tooth tigers, all friendly of course.  I was 10.

As I was wandering through Pinterest about a month ago, I was amazed at how much effort had been put into building some of these wonderful little things, I asked several of the pictures owners if I could include them in a post I was planning on (this one) and out of the 9 I asked two got back to me right away and approved my use of their pictures provided I also placed a link to the site and the post that I was taking the pictures from.

So, first, I would like to thank Red Shed Vintage and The Burgh Baby for permission to use their fairy garden pictures.  They returned an answer to my request within a few hours and I was delighted to have their permission and the use of their pictures. I checked out each of their blogs and they are now on my list of visit every week.

The first is from Red Shed Vintage and the Fairy Garden is built in a wheelbarrow.

Fairy Garden in a Wheelbarrow
Look how much effort was put into making this look so marvellous

 

A different angle

Alternate angle on the Fairy Garden in the Wheelbarrow
A different angle on the Fairy Garden, just have a look at some of the things in the garden.

 

Please go and take a look at the original post on this magical setting from the Red Shed Vintage blog.  Click the link below:

http://redshedvintage.blogspot.com/2012/05/miniature-primitive-garden.html

 

The second blog that allowed me to use their picture is The Burgh Baby and again, check out how much work goes into making up these lovely gardens.

Washtub Fairy Garden
Look at all the little bits and pieces that go into making one of these incredible miniatures

 

This piece took my breath away when I saw it.

 

Wishing well and Fairy House
Breakfast Nook and Wishing well, so much detail goes into even the smallest piece.

 

Again, please go and check on the original post from The Burgh Baby blog.  Click the link below:

https://www.theburghbaby.com/burghbaby/there-are-fairies-living-in-the-garden.html

These two wonderful mini gardens, as well as several others, were the reason that I decided on this project.  How could I not be able to say “I have fairies living in my garden.”

Please check out these two blogs and everything else on them, I am sure you will not be disappointed.

 

QUOTE OF THE WEEK

“STRENGTH DOESN’T COME FROM WHAT YOU CAN DO, IT COMES FROM OVERCOMING THE THINGS YOU ONCE THOUGHT YOU COULDN’T”

RIKKI  ROGERS

This quote resonated with me because I have found myself out doing even what I thought I was capable of when it comes to these blog posts.  The EBA course that I am taking right now, has as part of the course an assignment to write several what they call pillar posts.  Pillar posts are like foundation posts for your blog and I have been doing that.  In fact, I have surprised myself at just how much of myself I have been putting into each of these posts, which is why you will find little things along the way that take a moment to breathe or laugh, it’s kind of a release of tension for me and hopefully the source of a giggle or two for you.

 

Since this post is so long, I’m going to pass on the Family Life portion this week and just bring you some pictures of the dogs.

WILLIE ON THE DAY WE PICKED UP BAILLEY
MY BOY WILLIE ON THE DAY WE WENT TO PICK UP BAILEY. BOY, WHAT A SURPRISE FOR HIM, HIS WHOLE LIFE WAS ABOUT TO CHANGE.

 

 

 

BAILEY'S GETTING BIGGER
BAILEY AND THE SHOE. CAN YOU BELIEVE SHE WAS SMALLER THAN THAT SHOE THREE WEEKS AGO?

 

 

RECIPE OF THE WEEK 

 

QUESADILLAS 

Although most of you will have had these before and most likely could do them in your sleep.  I thought that if quick and easy is what you need, just in case, I would leave you with the recipe.

Mexican Grilled Cheese
This picture is not of the Quesadillas we made, for some reason my camera messed up the picture, so this picture came from Pixabay

 

Click on this link to get the recipe we used:  https://barbsoutlook.com/?post_type=recipe&p=7214&preview=true

 

 

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