Sleepless In (Enter City Here)

I’m awake. Again.

I went to bed around 9:50pm feeling pleasantly tired. I was yawning after a long day and having been up since 4:30 am. I followed my nightly routine, got into bed, got comfy and drifted off to sleep.

When I woke up to pee, it was no big deal…I’m not a great sleeper and I figured this was my usual “90 minutes later” wake up call.

I’d slept for 72 minutes. I think that’s a record for shortest time at night. And the worst part was I was wide awake. Like…wide awake. There was no chance I was going back to sleep.

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I hate having insomnia. I don’t know if it’s Fibromyalgia induced, or if it’s because of my sleep apnea or if it’s because of the medications I take, but I haven’t slept for more than 2-3 hours a night in over 5 years now. And once I wake up at 4am-ish, that’s it, I’m up for the day. I get the house ready for the day before my hubby gets up for work – the blinds open, the kettle ready, last nights dishes put away, the cat fed…those sorts of things. I make a coffee, come sit in my recliner and then hubby is up and I’m out of his way while he starts his morning routine. It works for us, and nobody gets hurt! Once he leaves for work, I have my breakfast and then I look at the long day ahead of me and figure out what I’m going to do to fill it.

Do I go back to bed after that? No, because as tired as I am, the best I’ll do is sleep for an hour and what’s the point? If I’m going to nap, I’d rather try to save it for later in the day, when there’s a chance I might sleep longer. That’s my hope anyways, Besides, if I sleep in the morning, I might miss the hummingbirds who come to the feeder on my back deck

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Sleep, or the lack of it, is a major side effect of having Fibromyalgia. Statistics show that people who have Fibro never make it into the deep REM sleep the way they need to so they miss the restorative sleep phase so necessary to feel rested:

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It’s no wonder I can never feel rested! I never get to the restorative stage! I also know I have sleep apnea. I have a CPAP machine and I have tried so many times to use it but I just can’t get used to the mask. I’ve tried a few different ones too, including over the face, and the current choice of the nasal style, but the longest I’ve lasted with wearing them is 4 hours before I wake up ripping them off of me. The worst part is that I am a side sleeper and trying to keep the damn things in place while on your side is next to impossible. Okay, maybe I’m just complaining because I don’t want to use the machine…how incredibly unsexy is that thing! but Hubby should be using one too and he refuses so part of the problem is also resentment.

So, after waking up after my glorious 72 minutes of sleep, and in the interest of good sleep habits I got up. At least I know better than to lay in bed, just hoping I’ll fall back asleep again. Here are some of those good sleep habits I’ve learned about over time:

  • Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations (hello 4am!)
  • Set a bedtime that is early enough for you to get at least 7 hours of sleep (does 5pm count?).
  • Don’t go to bed unless you are sleepy (I could be there 24 hours a day)
  • If you don’t fall asleep after 20 minutes, get out of bed (but I’m sleeping!)
  • Establish a relaxing bedtime routine (I do this part well)
  • Use your bed only for sleep and sex (well, the sex part at least works)
  • Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature (no problem here)
  • Limit exposure to bright light in the evenings (no problem here either)
  • Turn off electronic devices at least 30 minutes before bedtime. (oops, big problem here!!!)
  • Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack. (I’m okay with this one)
  • Exercise regularly and maintain a healthy diet. (I do okay with this too)
  • Avoid consuming caffeine in the late afternoon or evening. (I sometimes mess up with chocolate)
  • Avoid consuming alcohol before bedtime. (I don’t drink)
  • Reduce your fluid intake before bedtime. (usually not a problem)

One thing I have been trying lately is listening to sleep meditation music. There are some really relaxing ones out there that work on the Delta Waves of the brain and you can also find good Apps for your phone. I have an iPhone and one app in particular that is receiving great reviews is CALM by Apple. The other is Spotify which has wonderful playlists of calming music already set up or you can create your own from the many tracks available. I love listening to sounds…the rain falling, trains in the distance, things like that, so I love that option with Spotify. YouTube also has many videos of sleep meditations and if you use a YouTube to MP3 converter, you can also download these to listen to on your phone, whether it’s an iPhone or Android.

Hopefully some of these suggestions will be helpful. I don’t want to be sleepless in any city, anymore. I have slept, it’s happened a few times…I’d just like it to be more:

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Collapsed in exhaustion. Notice my glasses are still on.

There is always hope!

 

Let’s Make One Thing Clear…

Welcome!

FIBROMYALGIA IS REAL BUT YOU WILL ALWAYS FIND DOCTORS WHO DISAGREE

If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia DOES exist.

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Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.

The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.

Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all 18 of the 18 tender points that indicate Fibromyalgia is what I have.

Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:

1. This is not “just in my head”. My pain is real.

2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.

3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.

4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).

5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.

6. You think I’m faking being sick, but really I’m faking being well.

7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.

8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.

9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.

10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.

11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.

12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.

13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.

14. Some days, even my hair hurts

15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.

16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.

17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.

18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.

19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.

20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.

Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me. But, as I always say…

there is always hope!

Explaining Exhaustion & Pain

Welcome!

Have you ever felt tired? So tired you could barely move?  Guess what…I have a new word for you!!!

Actually, I think there are many people in my life who this word could apply to…the warriors who struggle along every day despite the illnesses that try to hold them back. My friends and fellow Warriors…you are simply Quanked!!!!!!

Taken from Grandiloquent Words:
Quanked
(KWANK’d)
Adjective:
-Overpowered by fatigue.
-To have the strength reduced or exhausted, as by labour or exertion; become fatigued; be sleepy.Origin uncertainUsed in a sentence:
“After sprunting all weekend, then frooncing to get my chores done, I’m well quanked.”Quanked is a condition in which one’s energy and vitality has been consumed. One who is quanked has used up his or her bodily or mental resources, usually because of arduous or long-sustained effort. To feel quanked at the end of the day; quanked after a hard run; feeling rather quanked; quanked by a long vigil.-See forswunke
Now, in all seriousness, I think the word is an excellent one to describe how it feels to be exhausted when you live with an Invisible Illness. It’s beyond any type of tiredness you’ve ever felt before. It’s sleeping for 12 hours and waking up just as tired as you were before you fell asleep. It’s like climbing a mountain when all you did was go up one flight of stairs. When sleeping on the couch is easier than trying to get up to go to bed.
Now add in being in pain constantly and what do you get? You get you. You get me. You get people like us, who have been living in varying stages of agony for varying periods of time.  I’ve talked with several friends who live with Fibromyalgia, Chronic Pain and Chronic Fatigue plus various other Invisible Illnesses and they’ve described their fatigue and pain like this:
  • It’s like swimming through concrete while being on fire at the same time (this was mine).
  • It’s like constantly having a “pins and needles” sensation that never goes away
  • I feel like I’m being randomly stabbed by a crazed maniac, but that crazed maniac is inside my body and I can’t stop it.
  • There are parts of my body that are numb and parts of my body that are burning and other parts of my body are throbbing and it all happens at the same time.
  • My brain is foggy and I can’t remember things like I used to. I hurt everywhere all the time and I’m always tired, no matter how much sleep I get. I don’t like this me that I am anymore.
  • I feel like I’ve been in a war, but you can’t see my wounds
  • Do you remember when you were young and you could stay up for hours and hours at night and never feel old? Yeah, well I can’t do that anymore. I’m lucky if I can stay up past 7pm and I don’t even have kids. I’m too tired and achy and sore.

There are ways you can try to improve your sleep with Fibro and Chronic Pain and the key is consistency:

  1. Sleep in a quiet dark room with a slightly cooler temperature than normal. Wear a sleep mask if necessary.
  2. Power down the electronics (TV, computer, Smartphone, etc.)  one hour before bedtime. The light from your bedside clock is also enough to disrupt your sleep, so check and see if there is a dim light setting, or face the clock away from you at night.
  3. Set a regular bedtime and wake up time. Establishing a schedule can help the body recognize good sleep habits.
  4. Consider downloading and listening to “sleep music”. There are many recordings that are free, including delta wave music which works with your brainwaves to help lull you into a natural sleep. A “white noise” machine may do the trick for you. These can be found in almost any electronics store and come with various sounds and settings, designed to help your body relax and let go.
  5. Limit Alcohol before bed.  You know you’ve read this before but for good reason. Alcohol may make you “feel” tired but actually will wake you up more often.
  6. Eat a healthy snack 45 minutes before bed. This would be something with protein in it like half a turkey sandwich, a small bowl of whole-grain low-sugar cereal, milk or yogurt or a banana. Eating like this before bed helps stave off the “midnight munchies” where you wake up starving in the wee hours of the night.
  7. Get some exercise! Regular exercise like walking or swimming can help the body to rest well in the evening. Start slow and build up over time. Work with a personal trainer if possible who can help you set up a routine tailored to your specific needs and abilities.
  8. Check with your Doctor to ensure there are no other underlying health issues that could be causing your fatigue (i.e.: thyroid issues, anemia, etc.).
  9. Don’t just lay there – get up! If you haven’t been able to fall asleep within 20 minutes, get up and leave the bedroom. Read or do something that doesn’t involve your TV or computer/Smartphone until you feel sleepy and then try again. The bedroom should be for sleep and sex only. The longer you lay awake in bed for, the more used to being awake in bed your body becomes. You need to break that cycle so getting out of bed and moving to a different room is the smart choice.
  10. Medications should be the last resort but are available to help if needed. Talk to your doctor or pharmacist for information about over the counter medications to try first.

If you tend to be a worrier at night, with a million things running through your head, allow yourself 10 minutes of this. Set an alarm and let your thoughts go wild. At the end of those 10 minutes, it’s time to stop. It takes practice but it gives you the opportunity to get all those worries out without mulling them over for hours. This isn’t the time for solutions, just the time to acknowledge that they’re there. At the end, say something like “I’m glad I had this time to worry about everything, but now I’m going to sleep on them. I’ll deal with them in the morning”. It tells your brain you’ve acknowledged the worries, and you’ll do something about them later. And off to sleep you go.

Another way to sleep better at night is to be organized during the day. The less you leave to chance during the daytime, the less you need to stress at night. “Did I sign Johnny’s papers for camp?”  “Where did I put the chequebook?” “When is the next Book Club meeting?”  Whether you use your smartphone, an organizer or the calendar at home, by having a regular system for keeping track of appointments, meetings and paperwork, you’ll stress less knowing you have it all in one place and you’ll sleep better at night.

Sleeping better isn’t always about being in less pain. It’s about doing all the things you can to make your environment as sleep-conducive as possible which may result in less pain. Removing as much stress as possible from your sleeping area is one of the biggest and best things you can do, so try and think of all the things that will make your bedroom area the most comfortable it can be. Perhaps there are items from this post that will help, such as pillows or a special scent. The key is, whatever you do, do it with consistency. None of us wants to feel quanked.

Remember…there is always hope

Chronic Pain Comforts

Welcome back!

When you live with Chronic Pain, whether it’s from Fibromyalgia, Osteoarthritis, Migraines or any other Invisible Illness, you want to find as many ways to be as comfortable as possible. You may or may not be taking pain medications, so sometimes the things on this list are the only things you rely on to get relief. You can find lists like these all over the internet, but I’m going to share my favourite ideas here. I won’t give you product names as there are far too many to mention and everyone has their favourite brands. I don’t tend to use all of these products myself, but many people do. If it works for you, great! If it doesn’t, don’t worry about it…move on and try something else.

Some of these things are for use at home, some are for taking with you when you’re out and some can be used in both locations. I like to have doubles of things such as Wet Wipes. They’re refreshing on the go or at home when bathing is a challenge and you need a quick clean up.

In no particular order:

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Heating Pad: Many people find using a source of heat to be extremely comforting. Just remember to take safety precautions with your skin, and never use a deep heating rub with a heating pad at the same time, or you’re asking to be burned.

Ice Packs: In much the same way as using heat, ice packs can be a lifesaver for pain. Some people with chronic pain use both at the same time…heat in one area and ice in another. Experiment with what works for you.

Eye Mask: When you’re having trouble sleeping, this can be quite soothing, especially if you prefer to sleep in complete darkness. It’s also helpful for Fibro induced migraines.

Ear Plugs: Again, super helpful to block out distractions to help you sleep better and to aid when Fibro migraines strike.

Epsom Salts: Soaking in a hot Epsom Salt bath is one of the best things you can do to soothe aching joints and muscles. There has been an explosion in Flotation Therapy lately in cities all over North America. People spend up to 90 minutes at a time in skin temperature Epsom Salt flotation therapy tanks, literally soaking up the benefits of this mineral. The ratio of Epsom salt to water in most tanks is such that many are more buoyant than the Dead Sea!

Magnesium Rub or Gel: Another essential mineral needed by the body, most of us are deficient. Using a good rub or gel can help alleviate pain. Ask your doctor if a supplement of Magnesium is right for you as well.

Pillows: Pillows for sleeping, pillows for propping, pillows for wedging, body pillows…wherever you need some extra support, finding the right pillow can be crucial to your comfort. Firm, medium or soft; feather or foam, whatever your preference is, you’re going for comfort, so let your body be the guide here.

Shower chair: If bathing is uncomfortable for you, but showing tires you out, consider getting a shower chair. They come in many sizes and shapes and can be found in lightweight, portable designs.

Kindle or e-reader: Take your entertainment with you or leave it at home, but always have your favourite books at your fingertips with an e-reader. There are many services that let you download books for free including your local library.

Body Lotion: Your favourite scent can help keep you smiling.

Magic bag/wheat pillow: These are the type of bag you can either microwave or freeze and use for spots on your body for various aches and pains

Scented candle: Some people find having scented candles burning helps them to relax. Try different scents according to the seasons or just choose your favourites.

Mints or Gum: If you tend towards having a dry mouth, you might want to keep mints or gum handy, or hard candies to suck on. I personally like Tic Tacs as they are small, come in lots of assorted flavours and are easy to pack in even the smallest of purses.

Colouring book: Currently one of the fastest growing trends to help relax you, there is an endless array of styles and designs to choose from. I have several on the go at any time, and use both pencil crayons and felt markers to colour mine. Jenny Lawson’s last book is part story/part colouring epic.

Herbal Tea: Even if you’re not normally a tea drinker, a good herbal tea at night (decaffeinated of course) can be a wonderful way to unwind before falling asleep. Many delicious flavours are there to choose from; I personally like fruity flavours the best.

Water to stay hydrated: Whether you use a water bottle or fancy decanter, having cold fresh water is essential in maintaining optimal good health for any condition. Make sure you keep it fresh by changing drinking the contents often.

Chocolate: Definitely an indulgence but if you’re not a fan of chocolate, at least keep a favourite snack nearby as a treat.

Fan: A small portable fan or a hand fan can help if you have trouble regulating your body temperature.

TENS Machine: Many people swear that using a TENS Machine helps with pain. I personally haven’t found relief with one, but everyone is different. Find out if you can rent one through a Medical Supply Store first before buying a unit, so you know if it will help you or not.

Portable Cane: A foldable cane can be super handy for around the house or outside if you find that sometimes you’re unsteady on your feet. They come in various colours and patterns so you won’t be stuck with “just” basic black if you want something to stand out with.

Essential Oils: These oils have long been thought to have medicinal purposes and many people swear by their properties. There are several good companies that market these and many more little independent companies to check out. Some carry a full range of products designed to use as a set and some carry individual offerings. Find what works for you.

Wet Wipes: The portable bath! When you need to freshen up but you’re just not feeling well enough for a proper bath or shower, wet wipes are the miracle bath.

Dry Shampoo: Like the above, dry shampoo is a spray/shake in, brush out helper for clean fresh hair without having to go through the full and proper wash and dry.

Favourite Pet or Stuffie: Everyone needs someone to cuddle!

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So there you have it, my list of essential comfort items when you need a little pick me up. Are there things you can think of that you would use? Share them in the comments so we can add them to our own lists.

Thanks for reading and remember…

there is always hope

 

 

Good Advice…

I want to share with you some valuable advice from another Pain Warrior. This is a person who lives with Chronic Pain from Fibromyalgia and his name is  Tom Seaman from The Mighty.  He just shared these thoughts recently and they struck such a chord with me that I had to share them with you.

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I used to blame myself for having Fibromyalgia and Chronic Pain and not being able to do things like everyone else. I figured there must have been something I had done in my past to cause it. I was a pretty rebellious teenager and did a lot of heavy partying, including drinking and drugs. I was in a very abusive relationship with my first “love”, the man who became the father of my two children. I have no doubt these things may have contributed to the stresses in my life, along with a huge and ugly surge of hormones when I started my period at the age of 13 (and turned from a normal young girl into a rage monster…no lie, you can ask my sister!).

As other stresses entered my life, my Chronic Pain got worse. So did my Osteoarthritis and my Chronic Fatigue. I was a single parent for a period of time and worried about my kids being on their own so much while I commuted three hours a day and worked at a job I loved. There were other relationships including a marriage that didn’t work out before I finally met my (now) husband Ray who is the finest man I could have ever hoped for. All of it took a toll on my health though, and I believe that a surgery I had in 2004 was the catalyst for my real downfall.

I had been suffering from severe Gastric Reflux Disease…GERD. I thought it was normal to eat a handful of Tums at a time and so had done nothing about my heartburn until Ray convinced me to talk to my doctor. She sent me for tests that showed I had a very severe form of GERD and recommended that I see a surgeon to have a surgery called a Nissen Fundoplication. It was named after the doctor who invented it, and basically what they do is take the top of the stomach and wrap it around the bottom of the esophagus, effectively preventing anything from backing up into the esophagus again. This means no more acid reflux and no more heartburn. It also means you lose your ability to vomit, so if you ever come down with the flu or become pregnant, you are in huge trouble. If you are dry heaving or attempting to vomit, the strain on the Fundoplication can stretch it enough that it loosens so you do bring up the contents of the stomach, and need to have the surgery redone. In my case, I need to go to the hospital and have an NG tube placed down my nose and into my stomach to empty the contents…a procedure I’ve had done 3 times now, so I’m a pro at swallowing the NG tube now.

I went ahead and had the surgery, and for what it was done for, it worked extremely well. I’ve had no problems with heartburn except a very rare exception every now and then. Unfortunately, I suffered nerve damage in my sternum area where an incision was made to hold one of the instruments in the surgery and which caused me tremendous pain for many months afterwards. I was drugged up on morphine pills (plus pills for nausea and itching) for so long that my friends could barely recognize who I was. It got to the point that I had to be hospitalized to wean off the morphine because I was hallucinating that I could hear a band playing, and I kept looking behind my computer to try and find them. The doctors were at the point they were going to crack open my chest to try and find the problem when the Thoracic Surgeon suggested trying Gabapentin for nerve damage and it worked. Unfortunately, that 11 months of pain and misery put me into such a Fibro flare that I don’t think I’ve ever properly recovered from it.

I went into quite a depressive spiral during that time. I was off work for months…I tried to go back but had to take more time off. I missed working…it’s always been my passion and to not be there with my team was hard. I was missing church and my Lifegroup, and missing my friends and times of social gatherings…I was just miserable. Eventually, I got better – well enough to go back to work, etc. but I’ve never felt 100% again. A year later, my body decided to go rogue on me and I ended up in 2006/2007 having 3 separate surgeries in a 6 month period of time; my left ovary burst, my gallbladder gave out and then my right ovary burst, putting me into surgical menopause (I’d had my uterus out at age 28). That in itself was traumatizing, so again, my Fibromyalgia kicked into high gear and I was flaring badly. I had one more surgery in 2007 that actually had to be cancelled while I was on the operating table as the Anesthesiologist couldn’t find a vein for the IV. I have tiny crappy veins and I’d been left waiting all day without liquid. No wonder.

So, my poor body went through the wringer during that period between 2006-early 2008 and I blamed myself so much. I don’t know why, there was nothing I could have done to prevent anything, but still…it just seemed like I was constantly ill or recuperating and I was never able to go out with Ray when he wanted to. All I wanted to do was sleep or rest and I felt like the worst wife in the world. All the chores were left for him, I had no energy to do anything…and yet he never once complained. He truly is the most remarkable man, and I know God picked him especially for me. Ray takes the best care of me and I am so grateful.

When I read the words that Tom Seaman posted, I was reminded of all of this all over again. It’s easy to get into a “blaming yourself” mindset but nothing we’ve done is our fault. Fibro picks its own victims (ooh, I hate that word) and we have to live with the consequences. I know we all try our best to live with it and make the most of life, but we have a tendency to try and fault ourselves I think. We feel guilty that we can’t be there for our families, our friends, our employers, our volunteer work. We drop hobbies and things we enjoy because we just don’t have the energy to do them anymore. We see others picking up the slack for us, and there can be a sense of shame. And often, we retreat because depression kicks us hard.

Today, I say NO MORE!  We have been dealt an ugly hand, but IT IS NOT OUR FAULT. If you are feeling these feelings of guilt, shame, anger, depression or other negatives, STOP. Nothing you have done has caused your Fibro. If you are living with Chronic Pain or Chronic Fatigue, accept it. It is what it is. You can’t change it so you have to accept it. The only other alternative is to wallow in misery and I don’t think that’s an acceptable alternative…and neither do you, honestly. Take Tom’s words to heart, and my words too…

THERE IS ALWAYS HOPE!!!!

Talkin’ Bout My Ment-al Illness

Did you automatically sing that title as “talking bout my Generation”?  That’s what I was aiming for!

I want to talk about Mental Illness today and the meds I take. I’m not ashamed to say I have Bipolar Disorder but I know there is a huge stigma around having a mental illness and talking about it. There are far too many people who grew up believing you should keep things like that hush hush because it would ruin your reputation, and that of your family if you said anything. People were put away in homes and hospitals who were severely mentally ill, or stories were told about “crazy Aunt Gladys” or “weird Uncle Marvin” and you knew you weren’t supposed to either hear them or repeat them.

Things are changing thank God, and I’ve never been afraid to just come out and say “I am Bipolar” in conversation. It’s a part of me, so why would I hide it? It was actually a relief to finally have a diagnosis because then I knew what those manic highs and depressing lows were all about. Do I like the highs and lows? Sometimes. They can be exciting, and energizing and fun. They can also be ugly and messy and scary. But the overall thing about having BD is that it’s uniquely a part of me. Take it away, and I would be so different. Less courageous. Less outgoing. Less interesting. Less, less, less….

One difficult thing about having a mental illness is the issue of being on medications. What you’re trying to do is balance the chemicals in your brain called Serotonins. Finding the right balance is a tricky business and can sometimes take years. I know people who have been on up to 17 different medications at various times, just trying to find the right combo that works for them. I’ve been lucky in that I was put on Seroquel when I was first diagnosed and it worked well for me for a long time.

It wasn’t until late 2016 when I started experiencing the auditory hallucinations  – I could hear music when others couldn’t, and I knew something was going on. I saw a Psychiatrist to rule out any new mental illnesses, and then Dr. Leong recommended the MRI and EEG I’ve talked about in earlier posts. We also decided to switch the Seroquel to something new and that’s when I started taking the Abilify.

I was nervous about taking it at first because of the list of side effects. I am bolding the ones I’ve experienced so far:

Common Abilify side effects may include:
  • weight gain;
  • blurred vision;
  • nausea, vomiting, changes in appetiteconstipation;
  • drooling (mild, at night);
  • a headache, dizzinessdrowsiness, feeling tired;
  • anxiety, feeling restless;
  • sleep problems (insomnia);
  • cold symptoms such as stuffy nose, sneezing, sore throat.

Now, why can’t Drug Manufacturers automatically make a drug with weight LOSS as a side effect??  Why is weight GAIN always the big one listed (haha). Seriously…what are they putting in there…hot dogs?? Milkshakes?  Okay, I’d take it in milkshake form (I LOVE milkshakes!), but I just don’t understand this. It must be a filler of some kind. Then there’s drooling. What the hell kind of side effect is that??? DROOLING??? Who thinks these things up?

~~~~~~~~~~~~~~~~

“Hey Ron”

“Yeah Charlie?”

“Do ya think we should make people drool with this one?”

“Oh yeah…we haven’t added that one in a long time. I bet people miss that side effect…yeah, let’s add it”.

~~~~~~~~~~~~~~~~~

*snork*   Right!  Okay, so now, I’m fat and drooling. How else can we make this attractive? Oh, I know…let’s make me constipated too! And then we’ll make me super tired, but add in insomnia, so I can’t sleep!! Mwaaaahaaahaaahaaahaaaaa

WitchesBrew1

Yeah…that’s about what it feels like. Seriously, I don’t understand why half these side effects are considered acceptable, but we go ahead and take them, because the side effects are worth the overall benefit of the drug itself. And what benefit am I getting from the Abilify? Well for one thing. I have energy again. And an interest in life. I’m not spending 90% of my day sleeping. I’m doing the household chores again. I’m getting together with friends again – socializing. I’m still in chronic pain, but my brain is in such a better place that I’m managing my pain better. Could I go back to work in this condition? No,  not a chance. My pain and fatigue still wipe me out, and I can only manage small chunks of all of these things, broken up throughout the day, but the fact is, I am able to do them again.

I don’t know how long it went on for, but most of my days on Seroquel were spent either in bed sleeping or in my recliner, playing on the computer. I would aimlessly shift between Facebook and a select few other websites I frequent, like Pinterest, some contest sites and game sites where I enjoy solitaire or various slot machines (not for real money). I still do that now, but it’s in between all the other things I’ve found interest in again. I also tend to do a lot of online shopping. Too much, and this can be part of my mania cycle of BD as well. My husband never says anything as long as I record my transactions in our financial system. But I’m doing other things like crafting again, and I’m making cards again for birthdays and stuff, and I want to learn to crochet again (I was just starting to learn and then boom!, totally lost interest when I started having trouble with the Seroquel and didn’t KNOW I was having trouble with it).

Now, here is the list of SEVERE side effects of Abilify. Again, I am bolding the ones I’ve experienced so far:

Call your doctor at once if you have:

  • severe agitation, distress, or restless feeling;
  • twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs (very rare and only for a moment);
  • mask-like appearance of the face, trouble swallowing, problems with speech;
  • seizure (convulsions);
  • thoughts about suicide or hurting yourself;
  • severe nervous system reaction–very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
  • low blood cell counts–sudden weakness or ill feeling, fever, chills, sore throat, swollen gums, painful mouth sores (I get inflamed tastebuds), red or swollen gums, skin sores, cold or flu symptoms, cough, trouble breathing; or
  • high blood sugar–increased thirst, increased urination, hunger, dry mouth, fruity breath odor, drowsiness, dry skin, weight loss    **oh LOOK! There’s my weight loss, but look what I have to go through to get it!! 😦

Because I have Type 2 Diabetes, I have to be extra careful in taking this medication. I need to check my blood on a more frequent basis, to make sure I’m maintaining optimum blood sugar levels at all times. I currently inject 14 units of insulin at night only and have done so for about 3 years now. If I notice that my sugars are going quite high on this med, we may have to change that up, and that will be hard for me. I like the benefits of this drug, and I’m not sure I want to start experimenting with other medications.

So…what about you dear reader. Do you have a mental illness? Do you talk about it if you do? Why or why not? Do you know other people who experience prejudice because of a mental illness? How are they treated differently? Do you stand up for them? Advocate for them?

It’s a scary world out there for people with mental illnesses. We never know for sure who our allies are or where we can feel safe talking about our lives and what we experience until we start talking to others. I make myself a safe haven. I talk about my mental illness so others know they can be safe and vulnerable around me. If you need someone to talk to, contact me.  Anything said to me stays private, even from my husband. If you’re on Facebook, look me up. Same with Messenger. Just put the words There Is Always Hope in the subject line, so I’ll know it’s not spam.

If you have anything you’d like to share here, please feel free to add a comment. I do moderate them, but only for spam…everything else gets posted. Thanks for reading and remember…

there is always hope

 

Needle-ittle Update On Things? Sure!!

I’m so funny! I make me laugh!!

Okay, first of all, welcome back! Now, I’m not sure if I’m welcoming you back to the blog, or myself. Honestly, it’s like I write in 2 month spurts, but I know I have so much I want to say….it just takes forever for me to feel well enough to write, and then I start and then I get tired and then I stop and then I get energy and then I start and then I get tired and then I stop and then I get energy and then…and then…and then. Well, of my 12 followers, and the few others who read this but don’t follow me (and you shouldn’t…I get lost a lot…more on that below too!), you probably know me well enough to know that my Chronic Pain and Chronic Fatigue pretty much rule what I can and can’t do. So, I write when I can, I keep short notes to add here later on when I’m able. Such as my hubby Ray and I heard that a dear friend of ours in Calgary was going through an extremely upsetting situation and facing some immediate financial challenges so daunting, she could lose her house. A mutual friend set up a Go Fund Me account for her, but Ray and I sent her an immediate $500 to help her right away. I wanted to share that because it was such a blessing to be able to help in a bigger way this time rather than just a phone call to tell her we were praying and that she was loved.

So, continuing with the story, I took my injection kit and headed off to see my Physiatrist, Dr. Winston on the morning of March 8th, all bright eyed and bushy tailed. He came into the examination room and asked if I had the Synvisc with me – it felt so clandestine (“Hey Rocco…you got the stuff?”). I gave him the box and told him I had a feel-good story for him about it. I mentioned in my last post that the cost for Synvisc-One is quite expensive – $481 to be exact, and when I had called my benefits provider, they had told me it wasn’t covered so we would have to bear the cost of it ourselves. Fine, no problem.

Well, wouldn’t you know it, but when Ray went to pick up the Synvisc-One kit…our insurance company covered the complete cost, no questions asked!!!  I love it when things like that happen…I believe it was God’s confirmation that we did the right thing helping our friend in need, and He provided for us in return. I’ve probably never mentioned on this blog that I’m a Christ Follower, but there you have it…the first time said, but probably not the last!

So, back to me and my knee!! Dr. Winston had another student with him for this appointment, another handsome young fellow named Lee (are all Med students so gorgeous now, like they’re all from TV shows???). Plus, Dr. Winston had a surprise for me…he had Botox for my face!!!!  Yay!  I wasn’t expecting that, so that was a real treat! He put some ice on my knee to freeze it a bit, then asked me to show Lee where I experience the facial pain, so I pointed to the area under the cheekbone. Then Dr. Winston explained to Lee that they don’t inject the Botox under that area or the muscles would droop. Instead, they do it along the side of the face, right by the hairline, going from the temple to the jawline and injecting approximately six small shots – more like tiny pinpricks, though I could feel the Botox spreading (more like oozing) as he did it.

I’ve had Botox injections done before, in other, more intimate places for muscles and it’s really not painful. So, he went ahead and did those injections while the knee froze, and it was quick and painless. After that was done, he got busy with my knee. The first injection was painful and he pointed out to Lee that you could physically see where I was shutting down because of pain…it was just agonizing!! Dr. Winston then injected some local freezing into the knee area and waited for it to take effect before injecting the rest of the Synvisc-One, which went smoother but still painful.

He told me to stay off the leg for the next couple of days and asked me to call him in a month to follow up, and then see him within 6 months for a follow-up appointment. So…what did happen after a month? Well, I’d say neither of the injections really did what I wanted them to do.

For the knee, there was a tiny bit of pain relief in the beginning, but after the first two weeks, the knee went back to collapsing with the sharp bolt of pain and the ache was there again, just as before. And with the face, I had a major TN flareup a month after the Botox, and have had several more since. I didn’t call to give him the follow up in the month after (probably because I was in the middle of the TN flareup then forgot), but now I need to call him to make an appointment because my right shoulder is giving me major grief. I mentioned it to him at the last appointment, and I’ve been doing the exercise he showed me, but I have a feeling I’ve damaged the rotator cuff and might need a surgical solution.

So, that’s where we’re at with those body parts. In other health news, I’ve had increasing auditory hallucinations, that continued to get louder and louder in my head, and the voices started getting louder as well. I was also able to distinguish the voices more clearly. They’ve always sounded more like “talk radio” but this time I could make out women’s voices and very clearly heard the word “her” being said over and over. At one point, I start having a panic attack, everything was so big in my head. Ray had his own Dr. appointment w. Dr. Leong and I gave him permission to talk about me. He told Dr. Leong that he was worried and Dr. Leong told Ray he wanted to see me asap. I went in the next day and Dr. Leong asked me if I knew why I was there. I answered, “because my husband loves me”. We’ve done a major prescription change…I am completely off the Seroquel for my Bipolar Disorder and I’ve started taking Abilify.

I think there’s been a huge difference already. The hallucinations have settled down, I have a bit more energy overall, I’ve lost a bit of weight, and I think my blood sugars have stabilized as well (it can affect a Diabetic’s blood sugars in both directions so I have to test my blood a little more frequently). I see Dr. Leong again on June 13th so I hope it’s all good news to share with him. It will be the first time in a long time I feel like I have good news to share!!!!  And in other news regarding Dr. Leong, he’s leaving Herald Street Health and moving to Mill Bay, BC, which is up the Malahat Hwy heading towards Nanaimo. He’s offered to keep me and Ray on as patients and I’ve accepted. Ray will just take time from work to drive me to appointments as mostly they should be every couple of months for prescription renewals and my Diabetes checkups, so nothing urgent. Ray will schedule his appointments with mine for the rare times he needs to go, so it should work out fine. Dr. Leong isn’t keeping a lot of his patients, so I feel blessed and honoured that he’s offered to have me stay with him.

Okay…enough of my health…let’s move on to what happened on our Seattle trip. I wanted to quickly say that I met up with my dear Chickie, Carrie Ann and she is just as delightful in person as she is online. We met up with two other lovely online friends from our Bloggess Pals group – a group of ladies who all love Jenny Lawson, the Bloggess.

Megan, Kimmy, Carrie and myself spent a few hours at Starbucks near our hotel, talking and laughing like we’d known each other forever!!!! We had the best time and it was hard to say goodbye.

Carrie then came to Victoria for a week with Ray and I. We went whale watching and shopping and hung out at home watching movies and just had a lovely time together!! I miss her very much. oxoxoxoxox

And how else have I been keeping busy? Why…volunteering of course!!!

I was not able to take part in the “Train the Trainer” course after all. I was having a lot of problems with energy and pain and I knew I wasn’t going to be able to bring my best self to the table, so I canceled with sadness. Fortunately, another opportunity came up for me to help others. I am going to be a Patient Speaker at the Island Health CARE Orientations. These orientations are for people who want to become volunteers just like me. Island Health is the Provincial Health Region I live in. Patient Voices Network is the Provincial Wide organization that I volunteer for. I wanted to make that distinction. I start on Thursday, June 14th by attending a CARE Orientation as an Observer, then attend a 2 hour coaching session in August. Once that’s finished, I’ll be put on the 2018/2019 Speaker Schedule and will speak 2-3 times (possibly more) in the Victoria area.

I continue to sit on the two committees mentioned earlier; the BC Emergency Medicine Network (@BCEmergMedNtwrkand the PVN Oversight & Advisory Committee (@PatientVoicesBC). My partner with the BC ER Medicine Network is Jolaine Cowherd – she and I are busy updating all of the Patient Information Sheets that are provided there. These are the sheets Doctors give you regarding various conditions when you are discharged; what to expect when you leave the hospital, what to do if your condition worsens after leaving the hospital, etc.  These are then approved and uploaded to our network so the information is always kept current. I also designed the sheet that Jolaine and I are using to update the information, as there hadn’t really been anything in place before – I’m not sure there had ever been a review process in place, and that’s why this volunteer position became available.

My role as Co-Chair of the O&A Committee has been a busy and enjoyable one. I’d been working with Ben Ridout, but he has now moved on to a newly created role, more tailored to his overall background, so I have a new partner in crime! Meet Teresa Bissenden! She’s absolutely delightful, as smart as Einstein, adorable as anything and is an amazing facilitator. We have been working together for a couple of months now and as the last thing that Ben and I decided, the main task for Teresa and I was to organize a Face to Face meeting for the O&A Committee. It would be the first meeting for many of us as the term for Committee members is 2 years, and so a great opportunity for Teresa to meet everyone as she starts her new role. So, that’s what we did!

Teresa and I worked on the agenda and then she and her amazing team, including Denise Pinto and Irena Apostu did the hard work of coordinating all the details, including travel, food, etc.  As a Certified Event Planner, I can tell you it is a HUGE job organizing these types of meetings, especially when you have people traveling from all around the province, including very remote locations. Everything was done very well…we all raved about Denise’s choice for lunch…delicious Indian food including fabulous Butter Chicken and Rice, and we all worked extremely hard on our agenda items, to successfully end the day with a finished document to present to the Ministry of Health. It was emotionally draining for me and I admit, I cried at the end when we were going around the circle giving our final thoughts (more about that below).

During our lunch break, I was supposed to be giving an interview to a reporter from a Nanaimo newspaper. He had contacted Teresa as he wanted to talk to a “patient partner” to get their feedback regarding the possibility of having WiFi in the Nanaimo hospital and all hospitals. The interview was scheduled for 12:30, but when we called him, he wasn’t around. His colleague offered to do it, but when I asked him if he knew the subject matter well, he said “not really”, so I said I’d rather do it with Spencer, the original reporter who requested to speak with me. I left my home number and asked for him to phone me this coming Monday (tomorrow) so we’ll see what happens. Not sure why he wasn’t available since he was the one who wanted to talk to me, but we’ll find out tomorrow I guess.

And now it’s time for some funny stuff, some sad stuff and some “you have to laugh about it now” stuff. After the meeting, I was so tired and emotional, I canceled my dinner plans and headed to the airport early (I knew my dear friend Donna would understand and she did). My flight wasn’t until late (10pm) so I realized I’d have a long wait – probably 5 hours, but I was hoping I could find a quiet corner and just rest. I hadn’t slept well the night before and actually not for several days prior, as is normal for me. I was also feeling emotional as I mentioned. The news about Kate Spade’s suicide had made me sad and then finding out that Anthony Bourdain had committed suicide that morning (June 8th) had really upset me. It wasn’t until I was home that I realized all day, in the back of my mind, I was worrying how many of the successful ladies I was with all day were struggling with depression and/or suicidal thoughts of their own if any. Would I be able to tell? Could I help?

After leaving the offices where the meeting was held, I started walking towards the Skytrain station to catch the train to the airport. I had already checked in for my Westjet flight and printed my boarding pass, and I only had my purse, a small bag, and my walker. It was pouring rain and I was wearing a long sleeve long sweater, just a thin one, but the station is only a few blocks away…I love that convenience of the offices being so close!!!  Except….this time I had a brain fart. My brain somehow thought the station was somewhere else. And I forgot to walk ONE BLOCK and turn right and just kept on walking straight. Did I mention it was pouring? Yes, I did. And I kept walking, thinking to myself, “Self, if you just walk to Burrard and then turn right, go down a couple of blocks, it’s right there”. But Self thought differently, and I turned when I shouldn’t have and then kept on making turns and walking down roads while getting wetter and wetter and more emotional and more emotional until almost 30 or 40 minutes later, Self finally stopped at a Bellhop at a fancy hotel to ask for help, since Pride took a hike a long, LONG time ago. This handsome young man looked at me and asked me if I was okay. Me, with tears in my eyes, replied: “I just need to find the Waterfront station”.

He replied back, very gently and very carefully “it’s right across the street Ma’am. Just go up to the lights, cross at the intersection and enter through the main doors to the elevator”. I’m not sure if he thought I was going to hit him or hug him but at any rate, he stepped back a step, and I just looked at him with tear filled eyes, whispered “thank you” and trudged away, dripping wet. I found the entrance to the station, stopped inside, and then started to sob. Huge tears start falling down my face and now I’m starting to shake. I stood there, just trying to breathe, but more and more tears are falling, so I just let it out of my system…I don’t care who sees me. No one stops but I don’t care. After a few minutes, I feel a bit better so I try to wipe my face with a soggy Kleenex until it falls apart on me. I headed over to the Ticket machine and now I have to figure out how to buy a ticket to the Airport. And I start crying again. Then I spot two Customer Service agents…I walk over to them, still with tears. One of them sees me and with concern asks “may I help you?”. I look at her and then totally lose it.

“I..am…having..a “sniff” …very…”sob”…fifficult..time…”sob”…with..the “sniff” …ticket…ma..ma..”sob”..chine”

Oh, my word. The two of them couldn’t have been nicer or more helpful!!! One of them hugs me and asks if I’m okay. I nod and manage to tell them how I got lost trying to get there and she’s fussing over me and how I’m wet and she’s picking wet Kleenex off of my face and the other is helping me get my ticket and I’m giving her my money and the first one is telling to make sure I get on the YVR train, not the other one and then I’m all set. Honestly, I couldn’t have done it without them. Well, I probably could have, but I’m oh, so glad they were there to help. I was so wet and cold and lost and overwhelmed and emotionally overloaded….a breakdown in the Skytrain station is the last thing I needed!!!

So yes, I made it to the airport, found a quiet spot, rested, caught my plane and of course, made it safely home to the arms of my husband!!!

And to finish up this blog post and get you totally up to date, today, June 10th is my wonderful husband Ray‘s birthday!!! I love this man so much!!! We’ve had a wonderful day together…I went for my first motorcycle ride in 2 YEARS with him – only to Denny’s for his birthday lunch but it was a start. He’s done some gardening, I’ve updated all 12 (and more?) of you and he’s in the kitchen, making something wonderful for dinner. Last night, we were at a Slegg work sponsored event at Western Speedway which was great fun!

So my friends…there you go. Everything that’s been going on for the last couple of months or so. As always, I promise to do better at staying up to date. As always, I’ll probably fail. But…I’m never gone forever unless I die. So let’s hope that doesn’t happen. Because now, when I end with my motto like I always do, it’s gonna sound weird.

There is always hope.

ha ha ha…I kill me.

nope…still weird!