Chronic Illness, Chronic Pain, ME

Denial is the same as a lie.

Truth bomb!: I have been living a lie.

I have been in denial that I am as sick as I am. I am probably as well as I am ever going to get. I have Myalgic Encephalomyelitis.

I have been trying to place all of the blame on fibromyalgia pain, because people can understand pain. Well, maybe fibromyalgia pain looks like a hoax to people because they see no injuries, but at least pain makes more sense to people than Chronic Fatigue Syndrome aka Myalgic Encephalomyelitis. People say, “Oh, yeah I am fatigued too…” Chronic Fatigue Syndrome is such a misnomer. It should be called Chronic Crash Syndrome. My body just is not going to recover from whatever virus or whatever is was that hijacked my nervous system and immune system. There are days I feel less sick, there are times I use all of the energy I can muster just to act, function and socialize like ‘normal ‘ people. I act fine. I enjoy acting fine, because I get to feel alive, included, normal. It takes everything out of me and I go back home and try to rest. A day or two goes by and then my body crashes. It is like trying to function with a never-ending flu. You’re worn out, weak, can’t eat. You have to crawl around because it is too strenuous to walk. How do I explain to someone a sickness when I don’t ‘look sick’? 

I have tried to dismiss ME/CFS for years- blaming myself for not being able to recover from physical or mental exertion. After cancer treatment, I attended a Livestrong program at the YMCA, designed to help recondition and strengthen our bodies. I slowly progressed every Tuesday and Thursday for an hour. I did gain strength. I did gain endurance. I did that and crashed the rest of the time, the rest of the days. Several months after the two month program, I am still paying the price. It turns out I am sicker, not stronger than before. I now sleep more hours than I am awake. Grocery shopping and running errands for a day will wipe me out for two days.

Damn. Trying to get stronger has made me weaker. Duh! You wouldn’t tell someone who is down with the flu to exercise more so they can have more energy and get out if bed! Yet… rest doesn’t make my sickness ever go away.

People with CFS/ME can drop heart and lung function after 15 min day one test because WE DON’T make energy right and can’t recover overnight. Who CAN recover overnight and do same on 2nd day as first day? – people with heart disease, lung disease, cancer, MS and almost anything else. But not us.

I really wanted to write a blog about life, without making my sicknesses the only subject. There is so much more in life. I know my sickness is my permanent lifestyle. It has taken me almost 15 years to come to grips with that fact. I am done blaming myself for my days being an uphill battle. If anyone could have won this war, I think it could have been me. I give up. I surrender. No more fighting. You get what you get and you don’t throw a fit? I don’t have the energy to throw a fit.

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Life, it’s chronic.

Thank you for reading!

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Chronic Illness

Wender Woman Protects Against Migraines!

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‘Wender Woman’ challenges headaches to stand back!

Get it? ‘Wender Woman’, because of the cool, metallic Wonder Woman headband and my name is Wendy? It is cooler when I don’t have to explain it. But, it’s still cool.

If you had a headache everyday, most of them migraines, you would do anything to arrest them. I have and will. If you have a migraine monkey on your back, I need not explain to you how a headache pain ends your day. For those of you without a migraine monkey, but still are curious, let me try to describe the impact of chronic headaches and/or migraines: Imagine the members of the crew of  Star Trek is seized by a high pitch sound that makes them press their hands against the sides of their heads, stumbling around, and grow weaker until they collapse into death poses on the floor. It is kinda like that- only worse.

In case you are wondering why I look especially tire, part of my headache prevention is done at night. Also, I am staying up late to write this post for you. Now you have an idea of why I really don’t care that I don’t have a flattering picture of Wender Woman on the post. I am dealing with chronic illness people, not advertising for a superhero movie!

What is the deal with the headband? It is one of many tools used to prevent and treat migraines. In Canada, you can buy them without a prescription because it is not a controlled substance. This device was prescribed to me by a neurologist at Mayo Clinic in Rochester, Minnesota. But, I would think any doctor or physician assistant could fax an order for one. I ordered mine from Canada, but still needed a prescription from the United States. Insurance companies do not cover the cost. It is FDA approved. The band is obviously not a food or a drug, so of course I don’t understand why the FDA would have any deal with it. There are no side effects that I have been able to notice; except being able to be able to think, be more active, be more healthy and be waaay less grumpy.

I have yet to access the superhuman benefits. Perhaps it’s because the headband isn’t even metal. If I was trying to get paid or reimbursed for ‘promoting’ the product, they would be asking for their money back right now. I am proud to admit that a salesperson I am not. I am in no way being compensated for this post. I don’t care. I just hope that it may help someone be able to live better.

This product is called a Cefaly. There is a sticky pad with an electrode that adheres to the forehead.

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The headband connects to the electrode. The headband is there to house the batteries and send signals to the electrode. The electrode sends impulses to nerves in the forehead. I am pretty sure that’s how Wonder Woman’s headband works too.

The electrical impulses sent to the nerves in the forehead somehow talk to the pain stimulators  at the base of the skull, inside the skull, inside the brain. The nerves tell the pain stimulators to hang back there and chill and don’t worry about what’s going on up front, because it’s under control. Don’t quote me on that. My doctor explained it in medical terms with detail that absolutely made more sense.

At first, I was assuming the identity of Wender Woman at night solely as a headache prophylactic (preventative) treatment. Between a very expensive Botox treatment every three months and the Cefaly device, my headaches are down to five or less per month. I used to have a headache every single day, with two-thirds or more of them escalating up to a migraine headache. Now, I am down to five or less headache days per month. When I do get a headache, if I catch it soon enough, I can usually knock it down by either using the Cefaly for twenty minutes, taking Sumatriptan or combining both the Sumatriptan and Cefaly.

The Cefaly is part of my balanced bedtime hygiene routine. I wind down in a dim lit room and chill for an hour with a book or my husband, aka ‘Wonder Man’; make sure my forehead is clean and dry, do my bedtime routine and apply the Cefaly. It took a little getting used to the strange sensations of the electrical impulses, but now I wouldn’t mind using it for fun during the day just to regenerate my superpowers. It is so relaxing. The late night routine is so relaxing that I  have to conjure up the self-discipline to stay awake until the end of the Cefaly cycle.

The sticky electrode pad can be reused for about three to four weeks. The electrodes are sold separately from the unit. When I bought mine, the Cefaly unit was a headband like you see in the above picture. It fits my baby-sized head very well.

My head is slightly bigger than my cat’s…

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My husband tried it out. He has a big, beautifully round forehead, but we couldn’t get it to even power up for him. The headband wouldn’t connect with the electrode on his horse-sized head. Cefaly now only makes the units without the arms along the side, which is great for pretty much anyone, even those with a baby-sized head.

I will keep my plastic headband, thank you very much! If I could find some magnetic bracelets that are supposed to be good for body pain, I might try them out. But, they would have to look like Wonder Woman’s wrist cuffs. Wender Woman is gaining strength one minute at a time. One year at a time. Life, it’s chronic.

Chronic Illness

Temporarily Chronic: Breast Cancer

7A7094D3-0A29-40F7-8853-6D318B1BF7B2.jpegThis photo is from about six months ago. So, I haven’t blogged about my experience with breast cancer, because I hope for it to be a temporary problem, not a chronic one. But, as I say, life IS chronic.

It has been thirteen months since I started treatment. I have to humbly say that I have been the epitome of grace under this pressure. At least I think so. I think people were possibly more concerned about me being so jolly about the treatment than they were about the cancer, although no one has told me that. If I were my friends and family, I would think that either I was being a very good actress with a professional performance or else I was going out of my mind! I mean, who glows in excitement about how great the cancer treatment process is?

Who enters cancer treatment being all smiley and like “Yay!” Well, let us see… I do! I do because I couldn’t be more relieved than to have the chance to save my life and to have the consciousness to watch it all happen. I was walking around with breast cancer and I did not own it. I did not plan on keeping it, so why own it? It did not tie me down, much less knock me down. I mean, I could get out of bed every day and be ever more grateful for another day and hopeful for tomorrow. What a gift.

People are very kind to cancer patients. Duh, right?! Well, I have had my series of chronic health problems and problems like so many of us, but I seriously have never been treated better by so many people that I know and even more people that I don’t know. How comforting is that! It is everything that makes life worth living for. Kindness.

I will come back again and write more about this chronic part of my life.  “Live it!”, says Wendy!

Life, it’s chronic.