Niagra Falls – 2008 – My trip to NY to finally get an official diagnosed of ME/CFS

May 12 is International ME/CFS awareness day. I was searching around online looking for events, info and blue ribbon’s to put on my twitter and facebook profiles. I came across this blog and news of Niagra Falls. With Jess’s permission, I am reposting her blog here:

In my post last weekend I told you about the All Fall Down Event taking place in London on 12 May 2013 for International ME / CFS Awareness Day 2013.

I’ve now learned of an event happening at Niagara Falls, Canada. Thanks to the hard work of the people behind the May 12th organisation, the Niagara Parks Commission of Niagara Falls Canada has confirmed that Niagara Falls will be illuminated in blue from 9:45 to 10:00 PM EST on 12 May 2013 representing Myalgic Encephalomyelitis (M.E.). Niagara Falls will also be illuminated in purple from 10:15 to 10:30PM EST representing Fibromyalgia. Find out more on the May 12th – International ME / CFS & FM Awareness Day Facebook page.

How amazing is that? Niagara Falls coloured blue and then purple in honour of ME / CFS and FM, amazing. I think it’s awesome. Slowly but surely ME / CFS awareness is becoming mainstream.

I’ve also heard of sponsored dressing gown days and lie-ins to raise money and awareness for ME / CFS. Why not organize a dressing gown day at your place of work, school or college? What could be more comfy than spending the day in your PJs and dressing gown? So many ME / CFS sufferers don’t have the choice and have to spend their time in PJs or dressing gowns as they simply don’t have the strength to get dressed.

We’d really appreciate all the help we can get to raise awareness of the debilitating illness that is ME / CFS. However big or small, please get involved 

This is very significant to me. It was 7 years after I first got sick, that I finally got an official diagnosis. And it came from a doctor we traveled across the country to see. He was in New York, and on that trip we visited Niagra Falls.

Thank you Jess for sharing this great news, and for allowing me to share it with my readers too! You can read Jess’s blog HERE

Forest Sunset (c) Melanie Pruitt 2013

This spring, my husband came home from work one day and announced, “There are a lot of daffodil’s around! And they are beautiful!” The daffodils had been blooming in our yard for a couple of weeks, so it surprised me that he was just now noticing them. He said he knew that, but it turns out that in walking to work that day instead of driving, he saw the daffodils in every garden! Slowing down had allowed him to see what he sped by every day in the car.

One of my favorite verses in the Bible is in the book of James. “Draw near to God and he will draw near to you”. It reminds me that, even though God is always near in the sense that he is always with me, I have a big impact on my perception and experience of his presence.

One of the best ways to draw near to God is to slow down, in both mind and body, so you can “see” God around you. I have known this for a long time. In my prior, un-sick life, I used to have to carve out time in my schedule to sit quietly and notice God. But even when I slowed my body, it was hard to slow my mind.

Now, my illness has slowed down my whole life. At first I found that irritating and frustrating.

Now, I find it very fulfilling. I notice so many things I never saw before. I see God everywhere and feel him beside me almost every moment of every day.

Yes, I’ve had to grieve losses of things I do, but slowing down both physically and mentally has also been one of the greatest benefits of becoming ill and mostly housebound. If I ever start feeling better, this is something I never want to lose touch with.

The painting above came from one of those moments when I couldn’t do anything but experience God! I was in the hot tub soaking away pain. I had my portable speakers and ipod out there and was playing Marc Enfroy’s new album “Dreams of the Forest”. Suddenly, the trees behind our house began to glow as the sun set behind them. It was the most amazing experience. And I wouldn’t have had it if I hadn’t been hurting that day.

Thankfully and Joyfully,

I’m actually getting pretty good at dealing with these disappointments (which is something I’d like to blog about soon), but since my brain isn’t cooperating to be able to write very much today, I wanted to share a little joy God has sent my way.

For the past couple of days, I have had this little visitor. I have a bird feeder outside this window and I love to watch the chickadees. But I have never had one land on the window before! Not only that, he lands, and taps on the window! A couple of taps to say hello, then he flies off. He’ll come back two or three times and then he’s gone until the next day. Today he posed long enough to get a couple of pictures!

At first I thought he must be eating bugs on the window. But the more I watch him, the less it looks like that. He just taps. Sits. Then heads to the feeder or flies away! It really feels like he’s saying “Hello”.

I think God is sending me a little reminder of this:

“That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Can all your worries add a single moment to your life? …”~Matthew 6:25-34

I hope he keeps visiting me. It’s a wonderful reminder of how much God values and loves me!

However, it sure got me excited about the upcoming football season!  GO PACK GO! Ooops… excuse me… got a little excited there.

Football season is a quite a ways off. While I wait, I’ve been enjoying this very funny video. Even if you don’t love football, I think you’ll get a chuckle from this:

Then it occurred to me that the real thing that has changed is my ability and commitment to pacing. I think it’s made a big difference!

This is my constant companion these days. It’s a heart rate monitor and the alarm starts beeping when I have hit my anerobic threshold. This is me resting with my feet up on the couch.

As long as I stay below my anerobic threshold, I am less likely to cause myself a severe flare of viral sore throats, low grade fevers, headaches and severe exhaustion. It has something to do with cell metabolism and an inability to recover from anerobic activity.

It’s been shown by experts at the University of Pacific, that though many illness’ include a factor of fatigue, ME/CFS is the only illness in which the body can not recover from exercise and actually gets worse.  They tested patients with MS, congestive heart disease, ME/CFS and others and found that all of these patients test low in a VO2 max test on day one. Then they put all of them thru the same test on day 2 and only ME/CFS patients tested even lower on day 2 than they did on day one! Other illness that involve fatigue tested at the same low level as day one.

Now, some people would like to believe that “pacing” will control ME/CFS flares. In my experience that is just not true. This illness can flare in any of it’s many symptoms, at anytime it feels like, with no rhyme or reason!! However, I can have an influence on the illness and not cause a flare by using my heart rate monitor and pacing!

Some days, just walking to the bathroom causes my alarm to go off. Other days, I can sit at my painting table or even throw some ingredients in the kitchen aid for cookies without it going off. As long as I pay attention to it, I know I won’t be causing the flare.

This is after walking 12 steps from the couch to my painting table. Some days it would flare much higher. Some days I can get there without it beeping at me.

The best thing about pacing, is that it gives me a little bit of working room to choose a few things I can do around the house on certain days. Or, it tells me when the things I’m choosing will result in feeling sicker tomorrow.

Other days, the symptom that is flaring is my POTS (Postural Orthostatic Tachycardia) and there is no way I can even stand up without the alarm going off. When this happens, I know I’m in for a flare the next couple of days. It doesn’t matter how much I try to rest, I still have to get up to go to the bathroom or get something to drink and that takes me way above my anerobic heart rate.

Unfortuneately, the other thing this kind of pacing doesn’t account for is mental exertion. Reading, writing, talking with people, loud sounds, large groups, or anything else that takes a lot of concentration are all things that can wear me down and cause a flare. This type of exertion is much harder for me to gauge and pace.

That being said, I do think having some influence on the symptoms and some getting some warning when I will have a really miserable day has helped me cope a lot. I’ve always been a person who coped better when I understand what was coming, even if it is bad, rather than dealing with the unknown.

A couple of days ago, I had a day I couldn’t even stand up without the alarm going off. I told my husband that I was going to have a bad day the next day. And sure enough, I woke up with a low grade fever and horrible flu like headache. He reminded me of what my heart was doing the day before and right away I knew why I was feeling so bad. I wasn’t able to control it or stop it, but at least I could connect it to something.

The days a symptom flares for no good reason are probably the hardest ones emotionally. Pacing has helped reduce that.

“Dogwood Branch” (c) Melanie Pruitt 2013

“Magnolia Branch” (c) Melanie Pruitt 2013

Though I have to work slowly, I’ve recently completed two new paintings. Actually, I think having to paint slow has improved my art!

These are both a part of my new series of modern florals. I painted the backgrounds first, using the exact same color palette for both paintings. This way, they can be purchased and hung individually or as a set!

You can click on the pictures and see these paintings in my Etsy Shop! You can also see some close-ups and how they might look matted and framed.

Prior to the meeting, I spent a lot of energy filling out questionnaires to share my experience along with many other patients.

Today, I listened to the mtg online. I found it very validating to hear other patients, both on the panel and in the audience, expressing such similar symptoms and struggles as I have.

But I also found it very emotional. I realized that one of the things that helps me cope is choosing to not focus on the big picture of symptoms and losses. I just focus on now and the blessings I experience and the things I can find to do to pass the time when I am feeling really sick.

As patients described their symptoms, my symptoms, their losses, my losses, I felt a wave of grief wash over me. It’s not just physical loss. The cognitive losses may be even harder to face. They are hard to define, hard to describe. I was amazed how well some of the patients described it, and I realized how much I try not to think about it all.

That’s OK I think. I want to have a positive outlook, and focus on the things I am blessed with rather than what I’ve lost. At the same time, I also think it’s OK to grieve. Sometimes, though, I think my brain is just to ill and tired to think about all of these things. I even find it hard to blog… not because I don’t have thoughts or something to say, but because it takes SO much effort to come up with the words.

Thanks for letting me share my heart with you today. Keep an eye out – I’ll keep trying to put some of my thoughts on living with ME/CFS into words. And to all of those who gave up so much to attend the meeting today for all of us, thank you!

(if you’d like to read a good overview of those who spoke, Check out this Health Rising blog)

Having time to create my own signature blends of tea at Adagio tea is one of those!!

I’ve made four signature blends at Adagio Tea! A friend already ordered two of them and said they are really good. I bought 2 of them and can’t wait to drink them all summer long! Here are the four blends I made. You can click on the label pictures to go to the website and see them:

Garden Fresh is a white tea blended  and flavored with rose hips, hibiscus flowers, apple pieces, natural cucumber flavor, natural strawberry flavor, blueberries, natural blueberry flavor, strawberries, raspberry leaves.

Sunshiny Day is a green tea blended and flavored with apple pieces, natural apricot flavor, natural mango flavor, natural vanilla flavor, marigold flowers, mango pieces, apricots.

Island Moon is a basically a tropical black Earl Grey! It’s a black tea flavored and blended with apple pieces, orange peels, natural passionfruit flavor, blue cornflowers, mango pieces, natural mango flavor, marigold flowers, natural vanilla flavor, natural bergamot flavor, natural creme flavor.

Devonshire Cream Scones is a black tea flavored and blended with raspberry leaves, natural currant flavor, natural creme flavor, natural almond flavor.

If you love teas, check out Adagio Teas and if you decide to make your own signature blends, leave me a message and tell me about it!

I am able to send any new customers a coupon code for $5 off! Send me a private message through my contact here and I’ll email you one!

(BTW: I don’t really get anything for sharing this with you. They do give some kind of “points” for people who purchase my blends, and coupons that are redeemed, but I don’t really know what the points are for – haha! It’s all just for fun and ways to spend my time at home. Gotta make the best of each an every situation I find myself in!)