Advice, Being A Patient, Brain, Disability, Diseases, Fibromyalgia, Frustrated, Hope, Invisible Illness, Osteoarthritis, Person with Chronic Pain PwCP, Work

Wishing While I (Don’t) Work

It’s Monday, and I wish I was at work.

Now a lot of you are probably thinking I’m crazy, and I am. While you’re getting up early in the morning to face the rush hour commute to go to a job you may not even enjoy, I could still be snuggled in my bed, fast asleep without a care in the world, right? Well, that’s the scenario you probably have in your head, but it’s far from the truth. As a Person with Chronic Pain (PwCP), I’ve probably been awake half the night because pain wouldn’t let me sleep; every muscle feels like concrete and every joint feels like someone has twisted it, put it into a machining vise and then clamped it three times tighter than necessary.

My brain hurts too…I want to be going to work with you. I loved my job prior to going on Long Term Disability (LTD) and the jobs I held before that. I was an Administrative Specialist at several different companies, mostly supporting Retail Operations and the people who managed the work; Directors, District Managers and Store Managers. In the past, I’ve worked for Rogers and Bell and my last company was The Forzani Group, now known as FGL Sports.  I supported the group that ran the former Sport Mart stores (now closed), but am still considered an employee of FGL Sports while on LTD.  I receive an employee discount and recently celebrated 10 years with the company.

I worked with an amazing group of people. I loved going into my job every day, knowing it was going to be challenging and fun and never knowing exactly what the day might bring. I organized team training events for Store Managers, travel and training for the District Managers, travel for the Regional Manager Rob Hillier and kept the Director, John Hould on track for his daily activities.

Then came the days when work started to become difficult. Too difficult. I had been doing all of this under the radar of Invisible Illness, which none of them knew about but it was starting to become an issue. Things that used to come easily to me became a struggle. I was famous for remembering things without needing a list and suddenly I was carrying notebooks with me because the Brain Fog was so bad. I would stop conversations in the middle of speaking because I forgot what I was saying. My pain levels were getting higher and higher but I refused to use a cane at work for my bad hip to ease the pain as I didn’t want to be perceived as being weak or incapable of being effective (this was prior to my right hip replacement). I couldn’t concentrate during meetings and even typing became a challenge – it still is to this day.

Once all the Sport Mart stores were closed, there wasn’t really a job for me any  longer, so the HR department encouraged me to go on Short Term Disability while I figured out my health issues. Short term became Long Term, and I never went back. My last day of work was in October of 2009. I started with the company in February of 2008. That’s right…I’ve been on Disability with FGL Sports for over four times longer than I worked for them. It was distressing for me to have to leave, because I loved the work and I was very good at what I did. My identity was wrapped up in my work and had been since I first started my career in 1991. When I found myself at home on leave, I didn’t know what to do with myself. I slept a lot in the beginning which was healing, but after that, I didn’t know what to do. I felt invisible, as I’ve discussed on this blog before. And being invisible can be a very painful thing. People accused me of not wanting to work, that this was an extended vacation for me, and that was really hurtful. If they could see inside me, they would know how very much I wanted to be back at my desk, with meaningful work to do. The mistake I made is that I didn’t go around complaining about my health at work, so no one knew how badly I was hurting except for a couple of select people in HR, plus my bosses John and Rob. 

I’ve asked my friend Tori Martin if I could share a quote here that she recently posted on Facebook and she graciously gave me her permission. This is what she said:

“STOP suggesting that people with disabilities of ANY kind just aren’t trying hard enough.

There are VERY few people who don’t want to work and contribute in a meaningful way according to society standards. Additionally, being able to work is NOT the ultimate measure of a person’s worth. Frankly, I am much more impressed at how a person treats others than what kind of work they do.I myself am unable to work due to physical limitations and it drives me crazy sometimes. Guess what though, I still have an incredible amount to give! I contribute to society through my photography, through having a huge heart that shows so much love and concern of others, through helping others, through occasional teaching of archery which helps many find confidence and enjoyment in physical activity. I contribute by paying taxes, voting, getting involved in local groups and causes and supporting local businesses. I am NOT a waste of space. And not that it’s anyone’s business, but I worked from the age of 10 until I was 39 and was literally bed-ridden for 2 years. My dr’s have been trying to help find ways of giving me back quality of life and things are so much better than those first two years, but nowhere near where they need to be to hold down even a part-time job. Telling people with mental or physical disabilities they have no worth if they can’t work is b*llshit and needs to stop. I am disgusted to have to say this after reading comments on a friend’s post. Apparently compassion and empathy is something that some folks just don’t have.”

 I think Tori really nails it with that comment. She lives with Rheumatoid Arthritis that really affects her hands and I know for a fact that she would love to be working if it were possible. Her friend John Hewak responded with this reply to her post: 

 “What makes it worse is that we feel the need to justify ourselves, due to both real and perceived judgement from others. People say things like “must be nice”, or “how can I get that?” Well first get f*cking sick, really sick, lose almost everything, navigate the tortuous and torturous health system, marshal up a posse of docs, specialist, therapists etc who validate you, get a lawyer, get on welfare, go through the painful application procedure and wait months to hear back while you sink into poverty. Most applicants are rejected first time . Repeat and rinse. If the institutional, bureaucratic, legal, and medical stars align, you might be accepted, in which case you get $1,000 to live on monthly., while you struggle with pain and alienation on a daily basis. Try that for a while. Wow, it’s so great not to work! Living the life of Riley.”

And finally, a third friend named John Poulson replied:

“I have found that people who give the most are the ones who have experienced hardship the most. People who have never experienced hardships have absolutely no idea or clue of what life really all about. It’s not about “things” but the experience you lend or give to others. Having compassion and showing that there are people out in the world that do care. Live; love; laugh. It’s the tears that makes one appreciate the good things in life. That’s my motto. ❤️❤️

It’s hard to be at home when you’d rather be out earning a living. Everyone thinks we have it so great, but when you’re housebound and feeling like crap, there’s nothing fun about it at all. We tend to be forgotten by our friends and sometimes our family members as well. We don’t get to go out and do “fun” things whenever we want – our time is generally taken up with Doctor appointments or physiotherapy treatments, etc. anyway.

So, to wrap this up, don’t forget your friend or family member who lives with Chronic Pain from Invisible Illness. Call them, ask to stop by for a visit, or to take them out of the house for a bit, whether it’s for lunch, or just a drive. They will let you know what they’re up for and how much energy they have. Even if they say no and they’d rather stay home, just keep in touch. That’s all we’re asking for. And don’t assume we’re being lazy. Trust me…most of us would rather be working if it were possible. 

At least I would. 

Remember…there is always hope. 

Chronic Fatigue Syndrome, Chronic Pain, Exhaustion, Fibromyalgia, Invisible Illness, Medications, Person with Chronic Pain PwCP, Uncategorized

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

Advice, Chronic Pain, Emotions, Fibromyalgia, Invisible Illness, Person with Chronic Pain PwCP, Uncategorized, Writing Posts

Something Different…

And now for something completely different!

Every now and then, I like to put something on this blog that is seemingly unrelated to Chronic Pain, Fibromyalgia and/or Invisible Health. I like to change it up a little as you might remember from this post.

Today, I’m sharing something that again has been floating around the Internet forever. I’ve changed it to encompass my Children, not just my daughter as the original version goes. I’m proud of both of my kids. They’ve each gone through some difficult circumstances in their lives and come out the other side better people. I’d like to think that advice like this might account for some of it.

Here we go:

❤️❤️❤️❤️  RULES TO TEACH MY CHILDREN ❤️❤️❤️❤️

1. Make your bed every day, even if it’s right before you get in it.

2. You don’t have to wear underwear… if you’re in an accident they’ll just cut your clothes off anyway.

3. Travel light through life. Keep only what you need.

4. It’s okay to cry when you’re hurt. It’s also okay to smash (some) things; but, wash your face, clean your mess, and get up off the floor when you’re done. You don’t belong down there.

5. If you’re going to curse, be clever. If you’re going to curse in public, know your audience.

6. Seek out the people and places that resonate with your soul.

7. Just because you can, doesn’t mean you should.

8. 5-second rule. It’s just dirt. There are worse things in a fast food cheeseburger.

9. You are a woman, you do not NEED a man. Or Vice Versa

10. Happiness is not a permanent state. Wholeness is. Don’t confuse these.

11. If you’re staying more than one night, unpack your bag.

12. Never lose your fierce spirit.

13. Be less sugar, more spice, and only as nice as you’re able to without compromising yourself.

14. Can’t is a cop-out.

15. Hold your heroes to a high standard. Then, be your own hero.

16. If you can’t smile with your eyes, don’t smile. Insincerity is nothing to aspire to.

17. Never lie to yourself.

18. HER – your body, your rules. HIM – re-read that.

19. If you have an opinion, you better know why.

20. Practice your passions.

21. Ask for what you want. The worst thing they can say is no.

22. Wish on stars and dandelions, then get to work to make them happen.

23. Stay as sweet as you are.

24. Fall in love often. Particularly with ideas, art, music, literature, food and far-off places.

25. Fall hard and forever in love with nothing but yourself.

26. Say Please, Thank You, and Pardon Me, whenever the situation warrants it.

27. Reserve “I’m sorry” for when you truly are.

28. Naps are for grown-ups, too.

29. Question everything, except your own intuition.

30. You have enough. You are enough.

31. You are amazing! Don’t let anyone ever make you feel you are not. If someone does….walk away. You deserve better.

32. No matter where you are, you can always come home.

33. Be happy and remember your roots; family is EVERYTHING.

34. Say what you mean and mean what you say.

35. No one will ever love you more than I do.

36. Be kind; treat others how you would like them to treat you.

37. If in doubt, remember whose Daughter/Son you are and straighten your crown, and own it like a boss!

Share your thoughts in the comments…is this advice you would give to your children? What is the best advice you have given to them? What was the best advice you ever received from your parents, or the people who raised you?

Do you think any of these pieces of advice DO relate to having an Invisible Illness? If so, which one(s)?

The reason I ask is that I think ALL of these questions could apply to someone with Chronic Pain. For example, #1 – isn’t it nicer to sleep in a bed that’s fresh and cool and made, with the sheets and blankets “just so”? And #6 – we all know that stress increases our pain levels, so by seeking out people and places that resonate with our souls, we are filling ourselves with the kind of peace that can end up helping us heal.

Let’s look at #14 – Can’t is a cop-out. I’m sure we’ve all said we “can’t” do something. Is that really true, or are we saying we can’t because it’s too painful or too overwhelming? Well, can we try something different then, or break the task into smaller pieces? Can we ask for help? Are we automatically saying the word we can’t, without even trying first? Sometimes we do the “kneejerk” reaction, without even stopping to think if something is possible. If we give it a try we might come to realize that not only is it possible, it’s actually quite enjoyable and beneficial at the same time.

For #25, Fall hard and forever in love with nothing but yourself – well, that seems a little narcissistic but if you don’t love yourself first, can you be capable of loving anything else? I believe there has to be a level of self-love in a person in order for them to love other people. You have to know what love is, in order to give love away. And I truly believe that love is for giving away to others!!

And for #37 – well, I think that says a lot too. On your highest pain days, when all seems lost and you don’t think you can go on, sometimes you’re going to have to remember your roots, straighten your crown and own your life like a BOSS! No one knows you better than you and these are the times you have to pamper yourself like never before. Pull out all the stops on your comfort item list and do whatever it takes to feel better.

Go through the list above and see if you make Chronic Pain and Invisible Illness positives from the rest of the numbers. I was able to and even if you’re not a naturally positive person, I think it can be done.

Remember…

There is always hope!

Bathing/Showering, Being A Patient, Books, Chronic Fatigue Syndrome, Chronic Pain, Comfort, Diseases, Exhaustion, Fibromyalgia, Invisible Illness, Mobility Aids, Person with Chronic Pain PwCP

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:

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

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!

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

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

 

 

Bi-Polar Disorder, Dr. Leong, Family, Hallucinations, Invisible Illness, Medications, Tests

On Being BiPolar…

Hello again!

When I posted about the various conditions that I live with, I deliberately left out mentioning Bipolar Disorder. I decided that because it was such a huge part of my life, it needed a post of its own. And guess what…here it is!

I was first diagnosed as having Bipolar Disorder just a couple of years ago when I was 54, but the reality is I’ve probably been Bipolar since I first entered puberty at the age of 13. Up until that point, I was a fairly quiet girl who loved nothing more than grabbing an apple and a book and climbing the neighbours’ maple tree to read for hours.  I could easily go through a book a day and would stay up there until my mom called me down for dinner. Once I turned 13 though and my period started, that initial surge of hormones did something major and destructive to my body and I swear that’s when I experienced the onset of my Bipolar Disorder. I went from nice girl to rage monster in 0.2 seconds flat. I become a mouthy little bitch who ditched her books for boys, smoking and drinking and fell in with a group at Junior High that was definitely the wrong crowd. I lost my virginity just before turning 14 (at the drive-in watching Star Wars) and started to do drugs like pot and hash. I also began disappearing from home for days at a time, staying with friends after partying much to the dismay of my family.

I was fearless during this time. It certainly never occurred to me that any harm would come to me. I did what I wanted when I wanted, and if my Dad tried to discipline me, I just didn’t go home. My poor sister would often be sent to go looking for me, a task she obviously resented (and that I wasn’t aware of until we were grown-ups), but I was only found when I wanted to be found. I was still in school and managed to stay in classes until I finished Grade 11. Then I made the decision to hitchhike to the United States for some adventure, which led to me meeting the man who would become the father of my two children. I had many adventures during my time in the States, and most of it was likely fueled by my Bipolar state. There were a lot of crashes too, and I can remember times where I would be in desperate tears wondering what was wrong with me. Why was I acting like a cheap prostitute half the time and a modern-day adventuress the other? My impulsiveness was out of control and even today, it still is.

I came back to Canada from the States when I was 20 and the mom to my son Troy after discovering I was pregnant when he was 6 months old. The dad left us and after staying with a friend in Bellingham, WA for a few weeks, I realized that my best option was to come back home. Shirley, my friend in Bellingham had already done so much to try and help me, but I couldn’t keep taking advantage of that friendship. Her brother even offered to marry me to keep me in the country so Troy could claim his America birthright (Troy was born in Sacramento, CA on January 30, 1982), but as flattered as I was, I decided it was easier to move back to my own home country. Despite everything I had put him through, my Dad came down to help me bring my few meagre belongings back and to meet his grandson for the first time. I found a place to live in Surrey, BC, went on Social Assistance for a period of time and then gave birth to my daughter Ashley on May 1st of 1983.

Time passed, I met a man, married him after a few years of living together, divorced after 3 years, had one more long-term relationship and then finally met Ray. We went through a lot of ups and downs in our relationship, partly because of my having kids and he was a bachelor, and partly because of my undiagnosed Bipolar Disorder. He even insisted we go for counselling at one point when things were really bad for us, which definitely helped us, but it didn’t change the fact that I still had incredible highs and lows in life and I never knew which version of me we were going to get.

Fast forward to now. I finally received a proper diagnosis at the age of 54 and what a relief that was – to finally have a name for what I was going through. It took some time to realize that I had had this going back to my early teens but there’s no denying it, not when I compare then to now and the symptoms I experience. My highs and lows mirror what I went through as a teenager, except now I’m on medication to help regulate those mood swings. Dr Leong put me on a medication called Seroquel which helped immediately – what a relief! Once I had some clarity back in my life, it was easy to see what I had been missing and what I had been doing. It was embarrassing as well. I could remember some of the highs and the impulsive behaviours – like shopping. I would shop online at 2am for things I really didn’t need but wanted nonetheless. It’s not that we couldn’t afford it, but it was all just frivolous stuff… jewellery, clothing, things like that. I mean, where do I go that I need to dress up? How many dresses does one lady actually need to own? Plenty according to me! And I’d conveniently “forget” to enter these transactions in our budgeting tracker so I could pretend I hadn’t spent any money.

If you’ve read my other posts, you’ll know that after a long period of being on the Seroquel with no problems, I began to have hallucinations while taking it that were directly related to the drug. I would hear music playing when no one else would hear anything. It was very distinctive and alternated between classical, jazz and country (which I don’t like). There wasn’t any singing, just music but after a while, I started hearing voices too. I was seen by a Psychiatrist to ensure I wasn’t developing Schizophrenia, but once given the all clear on that, my doctor decided to do an EEG and MRI, to make sure we hadn’t missed anything, like a brain tumour or scar tissue in the brain. I posted about that here and I haven’t heard back regarding the MRI – possibly because there’s nothing to mention, and possibly because Dr Leong just moved to a new practice and I haven’t heard from him yet. He is keeping me on as a patient, so that’s good news and he’ll keep Ray too since his new office is in Mill Bay which is about a 30-minute drive away from Langford and Ray will need to take time off work to drive me there. Transit is not an option.

At any rate, as I’ve mentioned, we had to stop the Seroquel and I started a new medication called Abilify. I have been SO happy with this new drug. I’ve regained some of my energy, I’ve found my interest in doing things around the house again, such as housekeeping and crafting and things like that. Look at what I made the other day:

IMG_0470
Our Nest

This is a multi-media art piece I worked on for a week, just a bit at a time. Sorry, it’s a bit glare-y, it’s framed with glass on top. This is the first thing I’ve worked on in over 2 years so you can tell how long the Seroquel dampened my emotions and interests and how the Abilify brought back ME!

I hate the fact it’s taking drugs to make me feel things again but I’d rather be on medication than not. I don’t like bouncing between raging and being depressed. Or being manically high and overly cheerful and then crashing and sleeping for days on end.  My insomnia is already bad, and I’ve gone up to 8 days without sleep. At least with Abilify, my sleep patterns are closer to normal than they’ve ever been (but still pretty wonky!).

No, it’s not easy to have a Bipolar Disorder, but it’s a part of me for life and I’ve finally learned to accept it. Acceptance is the hardest thing but without it, there is nothing but stress. By realizing this is a part of me, the same way I have silver in my hair, or I have the ability to sing, it normalizes the disorder and makes it more natural. I go a long way in making others feel comfortable with who I am as a total person as well. I don’t want people to see parts of me, like the Manic part and the Depressed part. I want them to see the whole me and that includes all the parts, good and bad, high and low. Its taken a long time, but I’m finally there. It took the proper diagnosis and the proper medication, but the real me is finally back again.

It’s about time.

There is always hope.

Chronic Fatigue Syndrome, Chronic Pain, Depression, Doctors, Emotions, Exhaustion, Family, Fibromyalgia, Frustrated, Gastric Reflux, Hallucinations, Invisible Illness, Medications, Osteoarthritis, Person with Chronic Pain PwCP, Surgery, Tests, Volunteering

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!!!!

Allodynia, Bathing/Showering, Chronic Pain, Fibromyalgia, Frustrated, Invisible Illness

Lamenting The Love Of The Bath

One of the curses of having Fibromyalgia is something called “allodynia”.
 
Allodynia (Ancient Greek άλλος állos “other” and οδύνη odúnē “pain”) refers to central pain sensitization (increased response of neurons) following normally non-painful, often repetitive, stimulation. Allodynia can lead to the triggering of a pain response from stimuli which do not normally provoke pain.
 
Why am I telling you this? Well, I used to be a bather, rather than a showerer because it had become too exhausting to “stand” in the shower and even if I used a tub chair, I hated having the water hit me. It was painful and to try and explain to people that having a shower hurt me was also painful. Seriously, how can a shower “hurt”? Well, the same way an electrical shock can hurt. For most people, it’s nothing…a tiny nuisance. For me, it’s an actual pain that shoots out of my finger like a firecracker has hit me. My husband Ray couldn’t understand this for the longest time, but once he received some type of electrical shock, I said to him “that’s what static electricity feels like to me” and he finally got it.
 
Back to the shower though. The water hitting me felt like a million shocks on my body, but bathing was also impossible. It had become far too difficult to get out of the tub in a bathing position even with grab bars, so showers became the norm. When they happened.
 
I have extreme difficulty lifting my arms above my head so washing my hair is a task. I’ve finally taken to doing it in the bathroom sink. Even though I still have to bend, I can stop and stretch a bit without water hitting me. And while in the shower, I use a long-handled scrub brush for legs and feet and I prefer it when hubby has to come and scrub my back for me – I can barely reach it with the brush (I NEVER shower when I’m alone at home).
As for shaving my legs…well, let’s just say that the sasquatch look is quite popular here and I wear a lot of long dresses.
65906-Spring-Harvest
Thank God Hubby doesn’t care – and he really doesn’t. He cares about my health and how to best help me, and that’s all that matters. I did recently buy a cheap men’s 3 head electric razor for my legs which makes a huge difference. I like the convenience of it – I can use it quickly if I’m going out and need bare legs and it charges quickly as well.
 
I have to be honest though, I really miss having a luxurious bath.
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Oh, what I would give to be able to enjoy the showering/bathing experience of the past!! The soaps and lotions and bath bombs and pouffes and the like. Now, I just desperately want to get in, get clean and get out so I can collapse naked on the bed to let my heartbeat slow down and to let my shaky limbs start feeling strong (haha) again. I lay there hoping my temperature will start to regulate itself and then go from overheated to the perfect temperature, to throwing the blanket over chilled me in the space of 30 seconds.
 
Yes…I wish that I could enjoy the simple pleasure of a shower or bath, but the best I can do is to try not to put it off for too long like 5 days. Or 7. Or 10. And I also need to start buying stock in dry shampoo and baby wipes. Enough said!
Remember…there is always hope!
Fun & Games, Invisible Illness

Fun and Games

Things have been a little too serious here lately, so it’s time for something fun.

Grab a pen or pencil and ask your children these questions about you. I’ve received a reply back from my son Troy (age 36) and I’m waiting for my daughter Ashley to do hers (age 35) so you can have your adult kids do it too. Their answers may surprise you!!!

WITHOUT ANY prompting, ask your child(ren) these questions and write down EXACTLY what they say. It is a great way to find out what they really think. If you decide to post to Facebook, etc., make sure you put your Child’s age down. The little kids’ answers are always so funny!

Child’s age:

1. What is something mom/dad always says to you?

2. What makes mom/dad happy?

3. What makes mom/dad sad?

4. How does your mom/dad make you laugh?

5. What was your mom/dad like as a child?

6. How old is your mom/dad?

7. How tall is your mom/dad?

8. What is her/his favorite thing to do?

9. What does she/he do when you’re not here?

10. If she/he became famous, what will it be for?

11. What is your mom/dad really good at?

12. What is your mom/dad not really good at?

13. What does your mom/dad do for a job?

14. What is your mom’s/dad’s favorite food?

15. What makes her/him proud of you?

16. If she/he were a character, who would it be?

17. What do you and your mom/dad do together?

18. How are you and your mom/dad the same?

19. How are you and mom/dad different?

20. How do you know mom/dad loves you?

21. What does your mom/dad like most about dad/mom?

22. Where is your mom’s/dad’s favourite place to go?

23. How old was mom/dad when you were born?

24. What is mom’s/dad’s favourite thing to say?

Have fun with this and remember…

There is always hope!

Being A Patient, Bi-Polar Disorder, Blog, Brachydactyly, Chronic Fatigue Syndrome, Chronic Pain, Diabetes Type 2, Diseases, Dr. Leong, Fibromyalgia, Forestier's Disease, Gastroparesis, Hip Surgery, Hypothyroidism, Internal Adhesions, Invisible Illness, Lady Garden, Medications, Osteoarthritis, Person with Chronic Pain PwCP, Reynauds, Spinal Pain, Tests, Total Hip Replacement, Trigeminal Neuralgia, Type 2 Diabetes, VIN 3, Vulvar Intraepithelial Neoplasia 3

Conditionally Speaking…

Welcome back!

I’ve talked specifically about a few of the conditions I live with, but I thought today I’d give you an overview of the 13 different health issues that make up who I am. Some are serious, some are just an inconvenience, but all of them are a part of me. Here’s the list:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • High Cholesterol
  • Brachydactyly Type E
  • Raynaud’s Disease
  • Hypothyroidism
  • Vulvar Intraepithelial Neoplasia 3 (VIN 3) – now healed

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with. Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it. I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing. Of course, I have weird fingers anyway…which leads to another thing on my list.

Brachydactyly.  Pronounced Brackee Dack Til ee, there are several types of this disorder and I have Type E.  It’s described as such, from Wikipedia:

Brachydactyly (Greek βραχύς = “short” plus δάκτυλος = “finger”), is a medical term which literally means “shortness of the fingers and toes” (digits). The shortness is relative to the length of other long bones and other parts of the body. Brachydactyly is an inherited, usually dominant trait. It most often occurs as an isolated dysmelia, but can also occur with other anomalies as part of many congenital syndromes.

Brachydactyly.svg

I was born missing the bone as shown in Type E, but it wasn’t apparent until I was about 5 or 6 years old and the ring fingers on both hands stopped “growing”. Each one is about a half inch longer than my pinkie, and that’s it. When I make a fist, there is no knuckle formation either.  You can see the flatness in the photo beside my hand.

PamFingers2  PamKnuckles

People always think my ring finger is swollen, but it’s actually the extra skin that would have covered the finger if it had grown to full length. My feet are the same way as well:

PamToes1

I can’t actually bend any of my toes individually – if I try to bend them, they all bend at the same time.  The second and third toe are mildly webbed on each foot and then you can see how severely affected the “ring toe” is affected. That’s because of the missing bone in the foot, just like the ring finger. The pinkie toe is basically normal. Each foot is the same.

Now because this is a genetic condition, I was quite interested to see if my kids or grandkids would have the same thing, but no…I’m the only one who has presented with it. I was adopted at birth and always wondered if anyone in my birth family had it too. I was able to find my birth mom approximately 15 years ago, and again, I am the only one on her side of the family with this condition. She doesn’t know about my birth Father’s side, but I believe I may have tracked down a family member for him and I’m just waiting to see if she contacts me. His name is Arvay Bernath and he was born and raised in Nanoose Bay, BC on Vancouver Island. He dated my mom Bonnie Rebecca Anderson from Parksville, BC on the Island and they were engaged when she became pregnant with me. Her dad didn’t approve and so they broke up and I was put up for adoption. Arvay appears to have passed away in 1997, but from information, I found on MyHeritage.com there is a relative named Lily Bernath who started a search page. I left her my contact info, but she hadn’t been on the page since 2017, so who knows if she’ll get my info or not. At any rate, he or his family may or may not have Brachydactyly too, or I could just be an anomaly.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis, which means (again according to Wikipedia):

Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.

Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket. The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked Dr. Leong if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try and exercise a bit more.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

DraggingMyButt

Oohhh, that is NOT a good look on me!!! Dr. Leong put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

The other few things on the list are all fairly minor. I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone. The High Cholesterol is managed easily with medication (too much ice cream!). The Reynauds is something that happens when my fingers and toes are exposed to the cold…they go bone white and lose sensation, so I have to be careful when getting things from the freezer or being in cooler windy weather, etc.

And finally, the Vulvar Intraepithelial Neoplasia 3 (VIN 3) which is now healed…well, we talked about that in the post entitled I’ve Got The Lady Garden Blues. 

So there you have it. Thirteen separate conditions with one healed and Chronic Pain is a part of 7 of them. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. I’m going to do a separate blog post about my Fibromyalgia because that’s been my predominant pain for so many years, but suffice to say that you have to be mighty strong to live like this, to get through the day to day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, unretractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I wish our Government would get on board with this. I know things are happening, and we’re getting closer, but it’s not well within reach for everyone.

Thanks for indulging me and letting me share more about me with you. If you have any questions or comments, please feel free to leave them here. And remember…

There is always hope!

Bi-Polar Disorder, Blog, Brain, Chronic Fatigue Syndrome, Chronic Pain, Depression, Dr. Leong, Emotions, Exhaustion, Hallucinations, Humour, Invisible Illness, Writing Posts

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

 

Being A Patient, Blog, Books, Brain, Chronic Fatigue Syndrome, Chronic Pain, Depression, Diabetes Type 2, Emotions, Facebook, Family, Fibromyalgia, Forestier's Disease, Frustrated, Humour, Invisible Illness, Medications, Myofascial Pain, Person with Chronic Pain PwCP, Support Groups, Total Hip Replacement, Trigeminal Neuralgia

Furiously Happy – A Tribute

I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.

 

She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.

I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:

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

I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.

I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.

Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.

Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).

One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”. Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.

And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!

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

Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS).  It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.

Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!

I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.

If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know. And remember…

there is always hope

Frustrated, Uncategorized, Writing Posts

Something Strange in the Neighbourhood

I don’t know what is going on with my posts and why the spacing is a problem now.

If you notice anything weird in my posts, where the paragraphs aren’t separated properly or things like that, just let me know. On my computer, I see a problem, yet when I go into WordPress, everything looks fine, even when I switch over to HTML. And even if I refresh my page using CTRL + C, I still see the spacing problem between paragraphs.

I’m writing this post in HTML to see if it makes a difference and I’m putting a picture of these guys in it to see if adding a photo changes anything:

ghostbusters-36

It shouldn’t cause a problem, but hey…it’s me and my page and just like my body…who knows what could be going on. Maybe it’s a ghost and maybe I was meant to write this ghost post.

and wow…two posts in a single day from me, both of them barely worth reading. I’ll try and work on my content for you. I’m sure I can do better. I’ll blame it on Dorie, my cat. She’s laying so close to my arm, I can barely type never mind think. Don’t believe me?

DorieandPam''sArm

Remember…there is always hope!

ps: it looks like I need to write in HTML all the time…it worked just fine!

😉

Achilles Tendon, Chronic Pain, Emotions, Frustrated, Invisible Illness, Swearing, Tests, Therapists

Ranting and Swearing…Grrr!

Back in my post of Two Months Later…and counting, I mentioned I was having problems with my Achilles Tendon. Well, I finally made an appointment with a Physiotherapist to have it looked at, as the pain and tenderness has been increasing. And what did I find out? It’s not just tendonitis in the Achilles Tendon, oh no….I have to have Bursitis on top of it, AND it’s most likely there are tears in the tendon itself.
Fuck
Rod is the therapist I’m seeing, and he gave me all the information to explain his findings. He could tell via massaging the tendon and my reaction to the pain that it spread beyond the tendon and into the bursa as well. He did 20 minutes of acupuncture with 4 needles (what is it with me and needles???) and will do that for a few weeks, plus he showed me some stretches like calf raises and modified lunges he wants me to do, to stretch the tendon out. If I want a permanent solution though, he said it’s most likely that I’d need surgery to repair the tendon. Otherwise, the only other option is to just put up with the pain.
Like, I don’t already live with enough pain? UGH! Here Pam…have another heaping helping. Go on…there’s plenty more where that came from apparently. Plus I haven’t even dealt with my shoulder yet -I think I’ve torn the Rotator Cuff. I have an appointment in August to see Dr. Winston, my Pain Doctor, about that on a more official basis. I mentioned the pain last time I was there (for the Synvisc and Botox), as I couldn’t even put my right arm behind my back, and I still can’t. I can’t raise it above my head or beyond straight to the side – it just won’t move any further. And yes, there is pain. And numbness.
Who does this??? Who has a body like this, that just falls apart for no apparent reason???
I’m done. I am simply done. I am worn out physically and I’m sick and tired of things breaking down in my body. I’m scared to ask “what’s next” because there’s going to be a “what’s next” and I’m not sure I’m prepared to deal with it.
Oh yeah – I have my Brain MRI on Friday, June 22nd at 6pm.
Great.

There is always hope!