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International ME/CFS Awareness Day May 12 – Niagra Falls will turn blue

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

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

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Slowing Down

5 May
Forest Sunset (c) Melanie Pruitt 2013

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,

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Pacing

29 Apr

I was thinking the other day about whether I’ve been feeling better or not, whether my ME/CFS is worsening, staying the same or improving. At first, as I compared the feeling of “suffering” I thought, “Hey, maybe I’ve improved!” But when I compared how much I get out of the house for an outing and how small the outings are when I do get them, it seems that I am doing less than ever.

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!

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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.

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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.

Kreativ Blogger Award - Seven Things I Love

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FDA Patient Focused Drug Development

25 Apr

Today was the first of FDA’s new 2-day workshop/meetings that they are calling “Patient Focused Drug Development”. They are focusing on illnesses that have little to no drug development and meeting with patients and professionals to better understand how to help. Today’s meeting was the first of many and it focused on ME/CFS.

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)

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What happened to the “Journey”?

8 Apr

If you’ve been following my blog for a long time, or if you just found my blog, you may be wondering, “what happened to the journey part of this blog?” or “Is this just an art blog?”

No, it’s not just an art blog. This blog is still about my my personal journey of living and dealing with ME/CFS, tho painting is an important part of my journey right now. It’s the time I escape the focus of viral symptoms, pain, and sleeplessness. I put on music (often my favorite Hawaiian music) and I spend time with God and quiet my soul.

I’ve been experiencing a lot of pain and viral symptoms lately. And not sleeping very well. I’ve been trying to find giveaways to win a new pillow, but haven’t been successful yet. Nature’s Sleep is looking for some new ambassadors… maybe they will pick me!! If so, I can review one of their memory foam pillows and share with all of you how much it helps my sleep and pain.

I’m still getting a lot of benefit from Noxicare. It still amazes me that some spices and herbs can have such an effect! (If you want to try it, I’ve linked to the FB page. They often have giveaways and then you can try it for free!)

I really wish there was more I could be doing for this illness. But at this point, I don’t even have a doctor who knows/understands ME/CFS to see. It amazes me that I can think back and remember the outbreak at Incline Village back in the 80′s, and now, here I am with the illness and we are no closer to understanding and treating it then we were back then. Mind boggling!

Well, I just wanted to let you know I have not left off sharing my journey.

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Pain

21 Jan

I’ve found something that is very helpful with the joint, muscle and nerve pain I get as a part of my ME/CFS. I don’t get anything out of this and they didn’t ask me to write a blog. I just wanted to share it because it’s helped me so much.

It’s called Noxicare. You can click the link to visit their Facebook page. This week, they are doing a bunch of giveaways!

noxicare-natural-pain-relief

That’s how I was first introduced to it. I am allergic to all caines, so Lidocaine is a big no for me. When I read this was all natural/herbal, I kinda doubted it would work. But I won some so it was worth giving it a try. I was amazed at how quickly it reduces my pain!!

Last night, my husband, who has RA, had a flare up in his hand. So I talked him into trying a bit – and he was also amazed at how quickly it reduced his pain.

So, if you struggle with pain like I do, I encourage you to go visit their FB page and see if you can win yourself a sample!

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Resignation vs. Acceptance

19 Jan
Winter Trees ACEO (c) Melanie Pruitt 2012

Winter Trees ACEO (c) Melanie Pruitt 2012

I’m in a process of chewing on two concepts… Resignation vs Acceptance

On the one hand, I’ve worked hard to patiently endure this chronic illness and all the changes and losses it has brought to my life. On the other hand, I haven’t embraced life, I have simply endured it.

I have thought that I was accepting my lot in life to adopt the common phrase “It is what it is”. But is that just resigning to the fact of illness?

Resignation is defined as, “To submit oneself passively…to give up (a position for example)…to relinquish (a right, privilege or claim), where as Acceptance is defined as, “to allow, to adopt, to agree”.

Synonyms of Acceptance are “approval, compliance, consent”. Acceptance speaks of acting in a positive way. Resignation implies simply putting up with.

What do you think? In the midst of loss and difficulties in life, is there a difference between being resigned to these difficulties vs. accepting them?

I have lots more thinking to do…..

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What am I paying for?

25 Apr

On top of everything else, I’m being plagued with migraines. Even had to visit the ER on one occasion.

My doctor prescribes a medication I took a few years ago. I wait…….

Finally the pharmacy calls and says the insurance requires authorization from the doctor. I am asked to call my doctor. I call….

Doctor says they hadn’t received a fax from pharmacy and tell me to call pharmacy and ask them to fax that info. I call….

Pharmacy says they will send a second fax. I wait….

Nothing….

I call the pharmacy and it still won’t go through insurance. They tell me to call insurance company. I call….

Insurance company says they need more information from doctor and that I should call the doctor. I call….

Doctor tells me that they need the letter from the insurance company and tell me to call them and ask them to fax. I call…

Insurance company says they will send a request for more info again. I wait….

Three weeks later and three migraines later, I still have no medication to help deal with them. So my question is, why is a very sick person having to call everyone over and over to get them to do their job? What is it I am paying all of them for?

~Frustrated patient.

Have YOU heard of ME/CFS?

8 Nov

This is the 30 second updated Public Service Announcement international version of the ME/CFS Worldwide Patient Alliance, a project supported by PANDORA.

It was created to raise awareness for myalgic encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS) in the United States.

Share the video.

Speak up for ME/CFS and become an agent for change.

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M.E./CFS – Simple Description

23 Sep

I have a hard time explaining, even to my closest friends and family, how this illness impacts me day in and day out.

Because I choose to push and “look” good on occasion, doesn’t ever mean I feel good. I do have days I feel better than others, but I always feel sick.

Yesterday, I found a very simple, but very profound description of this illness. It does a good job of defining and describing how I feel and why I feel that.

This was in answer to a question from a patient that wondered why all of his family members were sick with M.E./CFS. Here is the quote:

It is very possible that you and the family got exposed to an infectious agent like the cold virus and had an immune response against that virus. In most people such exposure to an infectious agent leads to an activation or stimulation of the immune system. This leads to all of the symptoms one gets with CFS and related to conditions since the symptoms come from the outpouring of products from the immune system. In most people the immune system is later quieted down by other cells of the immune system and the symptoms will go away. It is our impression that in people with CFS the stimulation of the immune system is not dampened or suppressed by the response of other immune cells to bring immune system back into balance. Thus CFS reflects a chronic immune activation condition. ~Jay Levey

(Jay Levy studies HIV/AIDS at the University of California, San Francisco. The main focus of his work is HIV pathogenesis. In July, he published a study in Science that failed to find XMRV in chronic fatigue syndrome patients.)

So basically, when the immune system kicks in to fight a bug, it creates all the “symptoms” we get… sore throat, headaches, fevers, achey, fatigue… etc etc.

The problem for CFS is that the second step of the immune process is not working. The immune response is not turned off… therefore the symptoms go on and on and on…. and on!

Just as a normal person forces themselves to work even though they have a sore throat and are achey and fatigued, I too can have times where I am up and interacting with others. However, I don’t really have the “luxury” of taking a couple of days and ignoring everything and everyone. My couple of days have turned into 9+ years.  If I always dressed and looked the way I feel, I’d have no friends – no family – and a very very sad and lonely life. I choose to push and “look” good on occaision – because I have to.

I choose not to let this chronic immune activation to take away my life.

The flip side is… people see me smiling, dressed, sometimes with make-up on and they have a hard time believing that I’m getting worse… or even sick! One kind word and a smile at the doctors office and they hardly believe I feel ill. (And yet, if I don’t smile and am not friendly, I’m labeled “depressed”,  or a difficult patient)

But it’s in my nature to be kind and friendly. It’s my personality and I don’t want to lose that. I’d much rather be misunderstood, than walk around with a mopey, down-trodded face to show off how sick I feel inside.

I hope this quote helps my friends and family understand a little more about how I feel all the time. I also hope it helps those of you who also suffer with M.E./CFS.

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