14 September 2012

Sharing About Her Invisible/Chronic Illness and Health Care in the Netherlands with Bianca van der Wiel. Living with Fibromyalgia

 Yesterday kicked off 
Invisible Illness Week
here on my front porch!
Thank you so much for the wonderful,
supportive, and respectful comments and emails
for Kayla!
If you didn't read yesterday's post,
you can catch up right here!

~ ~ ~
Today's post features 
Bianca van der Wiel,
who blogs at Quilts, Cats, and Automobiles,
 is Dutch and lives in the Netherlands.

Bianca suffers from Fibromyalgia and a host 
of other "Chronics" (as I like to call them!)
that have impacted her life.

I like Bianca's honesty and style of
"putting it all out there"!
She also writes about healthcare in the Netherlands.
Please feel free to ask any questions in
the comment section.
As we do have a time difference, you may want to check back tomorrow, to read Bianca's response to anything asked of her!

"But you don't look sick" is something that bothers me the most about having Fibromyalgia.
I wish you could see it, then I wouldn't have to explain why I can or can't do something. 
Or even worse; one day I can and the next day I can't.

To better understand invisible illness I sometimes send people "The Spoon Theory" (well known in the USA, but not so much in the Netherlands). A story written by someone with Lupus. It is a totally different illness, but the whole story could have been written by me, for the symptoms are very much like fibromyalgia. The exhaustion, the pains, the constant thinking about what you can do, how much energy you have for a day and how to spend it. Sometimes even plan your week, anticipate on things to do that week and plan your other activities and rest around that.

Healthy people don't have to think about everything they will have to do that day. I do. What is obvious or natural for them is an energy-consuming activity for me. Just showering in the morning, dressing myself, doing my makeup and blow drying my hair takes so much energy that most of the time I just don't do any of it,  if I don't have to go out that day. Just showering and putting on a pair of sweat pants and a t-shirt is much easier. 

Bianca is a wonderful quilter!
But, having FM has made this very difficult to keep up.

The two things I always do every day are vacuum and cleaning all three litter boxes. Most of the time I’ll do this as soon as I come down stairs, because that's when I have some energy left. In a couple of hours I can be so tired that I can't get out of my chair any more. The intense housecleaner I once was, is gone. 

I'd rather spend my energy on fun things. That's why I am still able to quilt and work with leather. That I don't dust out the bookcase instead is irritating but acceptable. Going grocery shopping, just visit someone; it takes to much energy, energy I don't have anymore. Not everybody gets this and I am often criticized about not visiting spontaneously anymore. I find this very annoying, but I stopped defending myself. If they don't understand it, that's their problem, not mine.

Sometimes I go far beyond my limits. Some things are worth it, even if the following days are very difficult to get through. Like last weekend.  Henk and I spent  a few days with friends off-roading in Germany. Sleeping in the truck and showering in a mobile shower-unit is an assault on my body all its own. Add to that two days of driving in a 4x4, constantly bracing myself for the next hump, bump, and pothole, bouncing around on a not so comfortable seat; this is a culmination of painful and fatiguing activities that drain my energy for days, even weeks to come. 
My body recovers very badly and slowly from such an intense period. 

Last year I thought that would be my last time to join in, but I managed to come this year too. Even though I stayed on the campsite in the afternoons and didn't have to do anything, I am still - three days later - so exhausted that I can barely stand on my feet. 
Then why do I do this?! I don’t want to give up everything!! It’s something my husband and I always did together for years. I knew in advance that I would have to pay the price, but some things are worth it….

Sometimes it makes me afraid. Afraid of the future, because every year I deteriorate a little bit more, am able to do less and need more time to recover.
Soon we will go on holiday, four weeks of touring through the USA. Sometimes I even think about not going, afraid that I can't keep up the tempo, scared I am holding back Henk from doing what he wants. 

He gives up things for me, always adapts himself to want I can do.  He didn't ask for this...
dealing with a sick wife. Very often I go on too long, do more than I can, just so I won't hold him back from doing what he wants. That's also a part of being married is my opinion, efface oneself for the other. He does this so often for me, so why not the other way around??

The partner of a sick person is so often forgotten in the grand scheme of things. All the attention and care goes out to the person with an illness, but it’s just as hard for family and especially the partners. Maybe even harder.  Yes, I know, they don’t have the pain, the troubles and everything that goes with it, but seeing your loved one in pain or very depressed is hard too!! So, if I can leave a message to all those who will read this; next time you speak or see a couple where one of them is ill, ask the partner on how he or she is doing. It would mean a lot, I am sure of it.

Bianca explains healthcare in the Netherlands~Very Interesting

In the U.S. Fibromyalgia is considered a chronic disease in the US. So, when you have this, you can apply for disability.
In the Netherlands FM is NOT considered a chronic disease, so even though we have disability,  I can’t apply for it. About 10 years ago I lost my job. Thinking I would have a new job in now time I also never applied for unemployment. I never found a new job and I don’t have an income for myself. Luckely my hubby has a great job and we do just fine.
In the Netherlands everyone has health insurance. The basic package is the same for everybody, including that the first € 220 (about $ 280) is for your own benefit. 
This only applies for medication. You can ensure all kinds of stuff extra. We have the most extensive package which costs about € 275 ($350) per month for the two of us (including that basic package).  This means almost everything is paid for!
Only those first €220 ($280.00) I have to pay myself, but with all the medications I take this comes to about 5 months worth of medications. 
My homeopath, osteopath, fysiotherapy, hospital visits, bloodwork, doctor visits, dental visits and everything you can imagine is paid for.
We also have the posibility to apply for help from our municipality; all kinds of help like a wheelchair, help with household chores, taxi allowance etc. This is not for free and your own contribution is measured by your income. Because my husband earns a good salary, our own contribution would be higher, so it is less expensive when we just pay for it out of our own pocket. Some of those things we can get back completly or partially from the tax authorities once a year.
So, all things considered, in my opinion, I’m not worse off or better of than the citizens in the US. I don’t get disability, but then I don't have to pay as much for health services and medications.

Sometimes I read about stories in the US about children getting ill, needing chemo or bone marrow transplantation and  because their parents have lost their health insurance etc., they have to have fund-raisers or take out second mortgages on their homes. I also read of people going bankrupt because of their medical bills. 
These kind of things never happen here. Everybody is treated, as extensive as needed, as long as needed. That’s why In My Opinion, the U.S. could benifit from some type of universal health-care program! This is the  european kind of way insurance and it WORKS, it really does. This is just my opinion, of course!

Hugs, Bianca
Bianca speaks and writes in fluent English.
She writes all of posts in Dutch and then translates
the post herself into English. 
None that Google translation, which can either make no sense,
or be pretty darn funny!

Tomorrow, Betsy Allison Tant will
be sharing with us about how getting the flu
5 months ago turned into 
the nightmare of all health nightmares!
I hope you will join us.

Again, thank you for all your support this week.
For those of us that live with invisible/chronic illness,
this has been an important week in our little worlds!

I appreciate each and every one of you.

{Kayla will return any answers etc. soon
in the comments section.
This has been a very rough week for her.}


TexWisGirl said...

thank you, bianca, for sharing your story and how it impacts your husband, as well. i know you are worried for your future. and i know misha worries for her and J. i am glad you get the type of healthcare coverage you do. i truly wish more of that was available here as it is so expensive. God bless you and i do hope you get to enjoy your tour of the US!

Donna said...

Thank you Bianca for sharing your story. I always love reading about your quilting and your furbabies!
I know you and Henk are looking forward to your visit to the US in a few weeks.
I know myself I feel bad when I use my handicap parking permit. I rarely use it because I look healthy despite having pulmonary fibrosis. I don't want people to judge me.
Thank you also to Misha for allowing others to share their invisible illnesses here on her blog!

Lynne said...

Thank you Bianca for telling us about your fibromyalgia. I liked hearing about your determination to endure, your strong will and consideration of your husband. I thought it was important for you to bring up his feelings and that of other spouses, family members.

I hope you will enjoy your trip to the US and hope you'll have a chance to see Misha.

Grandma Barb's This and That said...

Thank you Bianca for telling your story. Your determination to keep doing the things you love with your husband is inspiring. I hope that you can really enjoy your trip to the US.

yvon said...

I know what it is to look healty but nog beeing it. Sitting in a wheelchair and than stand up and hear people say: oh but you can walk".
I show myself when I am able to do things. But noboddy see mee when I have a lot of pain.
I follow the blog of Bianca and understand the struggle she has not only with the illness but also with the outside world.

ain't for city gals said...

Misha, these stories are so interesting and educational to say the least. I really cannot imagine how this would be for someone with chronic pain and more...maybe I could but I just don't think I could with grace that you and your friends live.

Kayla @ TheEclecticElement said...


That first paragraph you wrote sucked me in immediately! One of the most frustrating things is trying to explain to people who just can't GET it why you can do something one day and not the next; I live my life day by day (sometimes even minute by minute) because you really CAN'T predict how you're going to be doing in the future.

I feel such a kinship with you because everything you wrote about, I live and know, too.

My biggest problem is pacing myself when it comes to things I want to do--Then like you said, you pay dearly, but sometimes it's just worth it!

You're such a strong, inspirational woman, as are Misha and Betsy.

I appreciate you coming forward and sharing your story with everyone, including myself.

Lots of love and light coming to you from the U.S. :)

Rural Revival said...

Thank you for sharing your story Bianca. I have learned much about fibromyalgia through Misha but I honestly haven't put as much thought into how it affects the families, in particular the partners, of those suffering.

And I completely agree with your thoughts about healthcare when it comes to the US. It's not much different in Canada than it is in your country. I could never imagine having to worry about amassing debt because of illness. That would just be adding insult to injury.

I hope you and Henk are enjoying your visit to the US.


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