Monday, February 9, 2009

Diagnosis and Homeschooling

As a lot of you know, my health for the last year and half hasn't been the best. I've visited many Doctors, Specialists and made many trips to the ER. Symptoms that were seemingly unrelated, some frightening while others were just annoying. Nobody could put a name to this illness...but it continued on. I was dx with frozen shoulder to gas....and everything in between. There was concern about breast cancer, ovarian cancer, liver cancer. I had X Rays, a CT scan, ultra sounds, blood work, a mammogram, a scope put down into my stomach....just to name a few. Finally....mid December I was dx with Chronic Fatigue Syndrome.


I'm finding most people do not understand this illness. Part of the problem, I think, is the name. It implies...being tired....and well most people get tired. The fatigue I feel with this so much more than 'just being tired'. It goes much deeper than that. It is an extreme that cannot be fought. It's like trying to run a car on a flat tire....trying to squeeze just a few miles out of it. If the car is run with the flat starts to affect other parts of the car. This is what it feels like for me. I am exhausted at the best of times. If I actually do wears me out more. I start to swell and my body aches more. Most days I cannot make it around a grocery store. Sleep does not help.

The exhaustion is one thing....but the accompanying body aches are another thing. I feel like I've had a massive workout or ran several marathons .... every muscle in my body hurts....from my feet to my neck ( least I can say my face doesn't hurt lol).

Many people who have CFS are also dx with Fibromyalgia. Some articles I've read indicate these illness are related. Some articles say they are the same disease...but if the overwhelming symptom is fatigue...the dx CFS. If the overwhelming symptom is muscle aches, the dx is Fibromyalgia.

I've had people ask or hint about putting the kids back into school. Especially at this time, I'm so glad we do homeschool. I remember when Tyler and Brittney were in school....I could hardly keep up to the requirements then....and I was healthy. Homework to do, agendas to read and sign, note after note to read, sign, return or fill the request, lunches to pack, new indoor shoes to buy and send, projects to complete, costumes to prepare, money to send.....the list seemed to be endless. I can't imagine *having* to do all of that when moving around the house is a challenge. It's sooo much easier to curl up on the couch, under a blanket, with Jake beside me as we go over his English lesson for the day. We can map out our day to suit us....when it's convenient for us, whether that happens to be in the morning today and the afternoon makes no difference.

Then there are the kids...and Larry. They've all had to take on so much more. Brittney helps with supper. She takes turns doing the dishes. She had already been doing the laundry. She dusts the family room and dusts and vacuums her room.

Tyler helps with the dishes. He sweeps the kitchen after every meal. He helps with the dishes. Sometimes he even cooks lunch. He helps bring in the wood. He keeps his room in check. He vacuums the family room, the living room, our bedroom and the stairs if Larry is at work.

Jake sets the table. He does 'errands' around the house for me. He takes the fliers and newspapers down beside the woodstove. He helps Tyler and Larry bring bring in the wood.

Larry helps with the meals, does the grocery shopping, vacuums if he's not working, helps with the all of the usual 'Dad' things (outside work and earning the pay cheque).

I do not mean for this to be a pity post. Just the opposite. It comes by way of explanation. I may be down....for the time being....but I am not out. Not by a long shot. I am researching this. I've talked to many people who also have it. I've gotten some great resources. I think the biggest....and most difficult....thing for me to do....will be learning to say NO. Over the years, I've always been seen as being able to handle everything. People have had no problem dumping 'whatever' on to us....because they knew we would deal with and work it out. Not any more. Today is the day I need to learn the word NO.

Soo...I will not use my blog to whine (at least I will try not lol). I will update if I notice improvements.

Thanks, everyone!


Jacqueline said...

I'm glad you have a diagnosis and I think you are being very smart about it. I'll keep praying

Linda said...

Thanks for your post, I have always wondering what it feels like. I know I seem to have less energy than others. Your house is well ordered, your family is wonderful.

Shannon said...

It sounds like you have a wonderful, caring, loving family! I hope you find something that will make your illness easier to cope with and give you back some of your energy.

I'm sure the people suggesting sending the kids to school mean well, but homeschooling is a way of life and putting the kids in school will only make life more complicated, not easier on you. You know what works best for your family, why mess with it?


Becky said...

My heart goes out to you.. not pity but compassion from one mom to another. I know if I am down for a day the havoc it causes. I hope they can get you going full speed again.

If you never told us,
we would never know,
If we never knew,
we couldn't pray for you.

So thank you for telling us. There is no telling how many people are praying for you because of this blog. Isn't it great!

At Home on the Rock... said...

Thanks very much, ladies!

Renee said...

I found your blog through google alert for CFS. I too have CFS and was diagnosed in 1991. Turns out my CFS is a result of untreated Lyme disease. I was diagnosed with it in 2007 so now am treating the Lyme and managing the CFS as best I can. I really hope that you are able to regain some of your health through all the support of your family and the info you are arming yourself with.
I love your blog, your photos, ec. are beautiful. Canada is such a beautiful place but we have only visited years ago the Kenora and Winnepeg areas...with 2 friends in Kenora area.
I am so glad I found your home on the rock.
God bless

anitapreciouspearl said...

Hi Linda! I was coming to find you!!! (need little hunting character smilie here) When I read your post I was sad but I know you must be relieved to have a diagnosis. Hugs! Anita

At Home on the Rock... said...

Thanks again, everyone....I'm so glad to have your support (more than anyone will ever know). It has been a long road....but I *am* glad to have a diagnosis. I'm also thankful for all of on-line friends.