Insightful pain

I have been known to comment that when people praise us on our 'strength' or we have the belief that this life makes us stronger... that really it does not. We have this life. We endure it. And so would anyone else... because if you have to, you do. You just do. So I wonder about this notion of strength, because at times I do not feel strong at all. Other times I feel like I would not have survived this long with out some serious tenacity.

What about wise though? Does suffering teach us to be wise before our years?

You can't argue that suffering teaches. All suffering teaches lessons to us that we learn from that experience and develop and change. We don't learn as much from our joy. We learn from trials and tribulations.

But are we wise from this eternal chronic suffering? Some depth of wisdom going on? Has pain given us insight that was not there before? About life, about pain and about values?

I am not too sure. We change a vast amount from the experiences we endure for sure. Part of that is developing a pain narrative. How we think about pain and suffering in our lives. I can get downright philosophical about it. Because it is something I experience a lot of, so I have thought about 'what it all means'. So maybe we have insight there. Also we likely have different priorities. A sort of wisdom learned from having to moderate our activities and take care of ourselves. Something that teaches life does not have to be as fast paced as people seem to think. In some ways we also put a lot of value in the good moments and joys... because of the contrast. In a life full of pain, the bright moments shine. And we have learned to pay attention to those bright moments and value them.

But, unfortunately, I do not think we are gaining some epic wisdom here. Because in fact suffering does teach. But it teaches both ways. It can also teach us a lot of horrible things. We may feel because we are always in pain, we should just stop doing... things. It teaches us to feel guilty when we do not do enough (enough for us, for others, for society). It teaches us to mourn our old life and have anxiety over our future. It clouds the mind with negative thoughts and gives us poor concentration. Suffering all the time, well, always made me struggle with depression to be honest. The real truths about chronic pain are in fact depressing truths.

I think more that we are having a profound experience all the time. One that affects us mentally, emotionally and physically. It will consequently affect our thinking, our emotional states, our belief systems and physical states. It means we likely have unique views about pain. Unique insights about it. But, I doubt any more wise than any one else. We have a lot of struggles to deal with as well.

I wish I could have known... #HAWMC

There’s a reason why we have the saying, “Hindsight is 20/20.” What do you wish you had known at the beginning of your patient journey that would have made it easier and less scary? 

 With migraines there is a Lot I would have wished I had known. The fact is when you have episodic migraines doctors do not tell you much about your migraines. They hand you a triptan and tell you to take that abortive at the very first sign of a migraine.

I wish I had known what menstrual migraines were, because they present differently in me than my regular migraines. I didn't know I was getting them. Which actually meant I was pretty frequent on the migraine scale from the very first migraine I got.

I wish I knew the migraines could go chronic and that increasing in frequency as I was could be a sign of that. Or when I should have been put on a preventative. Or when I should have seen my first neurologist. Instead of waiting until they were beyond 15 a month.

I wish I had known auras could become persistent and outside of the migraine attack. It would not have disturbed me so much when it happened to me. I wish for sure I knew that vertigo could occur with migraines and that these bouts could last days or months... as that had seriously freaked me out the first time it had happened.

Had I even known migraines had the potential to become the serious entity they are I would have done my own research on them. Of course I would have. However, at the time, like most people I though 'seriously horrific headache'.

When it comes to my fibromyalgia on the other hand I actually was ahead of the game. I was quite certain I had it prior to being diagnosed with it. It does after all take some time to be diagnosed and by the time you do you have a lot of symptoms and have already adapted to them. I already knew the impact it had. I already knew from a young age that it would impact the type of work I did for example. I knew it could impact me further, but I do consider myself lucky because it could be worse than it is. I had done some research, on it and other conditions that I might have (like lupus since I have a high ANA factor) and so I knew of the symptoms I had, and could potentially have... so I was prepared when some of them did in fact years later crop up. I knew I had to moderate my lifestyle and in fact did before my diagnosis. Knew I had to live within my limits and certainly try to... although sometimes exceed them. So by the time they got around to diagnosing me I had already figured out how to cope and knew my illness well. I just didn't know in fact 'what' it was. Just that it was.

I wish though that I knew the impact pain could have on a person. I knew what it was like to have hypermobility syndrome as a kid. Then FM. And then migraines. Then chronic migraines. Add them all up and it had a severe impact on me. One didn't. Two didn't even really. I still adapted. It was difficult but you learn to cope. Three was extremely difficult and then when the migraines went chronic it was just too much to handle. Frankly I wish I had never learned that about myself. That there is a pain I cannot cope with. It is better to think you can just conquer anything. When i was younger I just assumed I would persevere. As long as my mind was intact and I could find satisfying work, obviously a desk job, I assumed my wellbeing would remain intact. I wish I knew how dangerous pain was. That it was going to get worse. So that I would have been mentally prepared for it. So that I could have learned all the different coping strategies I would need for it way in advance. But I can say that all I want... that is truly something that one needs to learn by experience. One cannot know pain until it is endured. When it is endured, then you adapt. Until then, you just cannot fathom it.

Product review #HAWMC

What’s your favorite health-related product? Share it with your community and tell them why you love it so much and how it has helped you on your patient journey. 

I suppose if I were to recommend one product it would be this new one I am using as a migraine balm. It is an oil and you only use a few drops. It can be used for many different things and even added to bath water. 

I have used different sorts of migraine balms. Some with menthol and some with eucalyptus, lavender and things of that nature. I prefer the stronger ones. That sort of strong tangible menthol touch. Some are goopy and make your face sticky... which I rather do not like. Some are more soothing, lotions but just do not seem strong enough. I find the oils rub in just right, with no residue and are stronger. 
The product I have been using is Hagina Japanese mint oil. I use it on my forehead, temples and along my upper jaw area. So soothing. Along with ice on the back of the neck... feels so nice.


Not recommended for full body massage.

Heating & Penetrating effects for Spot Treatment in massage, helps promote blood circulation, chest rub for chest and head colds, relieves tight muscles, cramps. Also, helps relieve rheumatic pain, helps treat sprains, swellings, dislocations, sport injuries, headaches.

A few drops massaged into a specific area:

  • Helps promote circulation.
  • Relieves tight muscles and muscle cramps.
  • Useful for injury rehab when treating sprains, strains, swelling and dislocations.
  • Headache relief when massaged on to the temples and the back of the neck.
  • Rub on the chest for head and chest cold relief.
  • Sinus congestion relief add a few drops into a basin of hot water, inhale while keeping eyes closed.


Use “health” as an acronym and come up with words that represent your Health Activist journey. 

H- Helping- I hope to help others through my story and information I provide. I hope that they know they are not alone by sharing my experiences and thoughts along the way.

E- Experience- I have had chronic illnesses for a significant portion of my life. Enough to know that coping is a flexible entity that changes with our life events and illness. I hope that sharing my experiences helps others with their struggles as well.

A- Awareness- I try to raise awareness along the way about chronic pain, invisible disabilities, fibromyalgia and migraines in any way that I can.

L- Learning- I adapt just as much as any one else does. I come across new ways to cope. New treatments. New lessons. And learning is something that is a part of the process.

T - Thinking- A lot of my blog can be very introspective about the process I go through with coping and chronic illness. Something I think a lot of people can relate to. I like to get that out and explore it. I think that it helps me a lot to do so and I think a lot of people can relate to it in their own experiences.

H - Healing- Healing is something I consider to be that place with chronic illness where we reach that perfect balance and acceptance. I aim for it all the time. I attain it at times. I want to help others attain it. Aim for it. But when we do not, I do not want anyone to feel guilty about that because coping is a difficult process. And we cannot always cope well along the way. I believe that we are always a work in progress and it does take a lot of constant work on our part to achieve a sense of well-being or to aim for a better sense of well-being. But I want to be on that journey with people. I want to have progress myself.

Make it a great day #HAWMC

Life is full of ups and downs. Sometimes, the type of day we have is out of our control, but other times, we can influence how our day is going. Come up with 5 tips for changing your frame of mind when you’re having a bad day!

There are times when we have some control on how we react to pain. We can react in a way that re-frames out pain in that moment, such that it is not a negative experience at the time. We can in effect take what could be a bad day and make it into a good day. Not always easy to do, but it can happen.

In a work situation to help me with pain and stress I do this:

  • I do not multitask. It has been show to be detrimental in all people, but with chronic pain when half the brain is thinking about pain, it is even more so. Your concentration is impaired. So I do not do it. One task at a time.
  • I eat little snacks through the day to keep my blood sugar up and it helps with brain fog.
  • I do a walk about the office every twenty minutes to reduce levels of pain from sitting too long
  • I utilize a reference book I have made, so if I forgot something I can refer to it without being stressed out about it and trying to remember. (Although since I started back I have not had that, I have to go get it from the other branch... because I Need it).
  • I use note taking. Reminders on my phone. In the system at work. It is less stressful to me to have ways to remember tasks I have going on. At work I use a tasks work sheet for tasks I have pending. 

The fact of the matter is for better stability, bad pain day or good, it is better to stick to routines. With brain fog, concentration issues and pain routines can reduce a lot of stress on us. Focus on one thing at a time. Finish it move onto the next. Take reminder notes to yourself. Have a calender app you can plot things into. Keeping organized as you can really does benefit us. It takes a lot of the stress away on a bad day when things are already that much harder to accomplish. 

Word Cloud #HAWMC

Use Wordle to make a cloud full of words that come to mind when yo u think of your blog, health, condition, interests or community. Pro Tip: Use a thesaurus to make the branches of your “tree” extend further.

I didn't use wordle as it seemed to disagree with my computer. So I used Tagxedo which I have used before.

 This one is made from words from my blog

And this one was words that I chose.

Fitness Friday #HAWMC

Tell us about your how you maintain a healthy lifestyle. What is your favorite type of exercise? How do you manage fitness with a chronic illness? 

This is a hard one. When I was not working I was exercising 20 minutes about four times a week on the stationary bike. The pain clinic had wanted me to do aerobic exercise so that is the method I chose. Prior to that I had been walking and doing yoga.

Working through has sort of cut into my energy and already I have been exercising less. I find it difficult to combat the fatigue inherent with working fulltime. I do mediate to relieve the stresses of working. But having the energy after work to do Anything has been difficult. So I have been trying to exercise on my days off.

And it is important to me to exercise because it is part of the routine set up by the pain clinic to help me with the chronic migraines, which have been very difficult to treat. So primarily it is medication, meditation and exercise. To cut one of those out and I could have adverse affects. Something I do Not want to see while working.

It is in fact a very difficult balance to maintain. All the things we do for our health... and working. When I am not working I will do anything for my health, within my very limited financial means. They ask it of me, I will do it. I want improvement. However, you show any slight, every so minor, not even statistically significant improvement and you are Cured and off to work you go. And then somehow you have to manage to do all those things that may have caused that very slight improvement without having work itself causing a massive decline. Complicated? Very. Something in the past I have never managed to succeed at. But then I never managed any significant improvement either. Not that I had any improvement this time, but I will say the meditation does help a little so that is something. Will it help enough? Hard to say.

So finding that extra oomph for exercise is difficult. I had a difficult time with it not working. I had to work my way up to 20 minutes. Slowly and consistently over time. And I was supposed to keep on with that progress. And also keep up with my physio regiment.

I'd like to say I will succeed in establishing that balance as I know it is important but adapting to work has been difficult and hard on the body. That being said if I cannot I may go back to what I had been doing; walking in the evening and on alternate days doing some yoga. Less strain on the body and more relaxing to be honest. I feel that exercise is important for managing pain, but I am not set in stone on aerobic exercise like the pain clinic is. Especially since I read the study they are getting it from and quite frankly I was less than impressed. I understand their reasoning, just that I also see the value in any exercise, period.

Painsomnia #HAWMC

Health Activist Choice Write about whatever you like! Got a great story, opinion, or tip to share? Tell us here. 

 I will use this topic to discuss painsomnia. When you have chronic pain it can quite easily lead to insomnia due to pain, worse when you already had insomnia to deal with to begin with. I have always had insomnia, since I was quite young. I had pain from hypermobility when I was a kid and developing insomnia from that is apparently quite common. Fibromyalgia just made it worse. When the chronic migraines developed well Then I had a Problem because lack of sleep is a migraine trigger, then an acute migraine at night made it even more difficult to sleep, leading to very little sleep, leading to a migraine the next morning... and that is the cycle I got stuck into.

So what do we do about painsomnia? here are some of the things that I do.

  • It is recommended to avoid electronics like the computer and cellphones before bed due to the blue light interfering with sleep. I like going on the computer before sleep as it is quiet and I can use it as my down time. The solution is putting a program called F.lux on your computer so that it changes your screen when it starts getting dark to a rose tint so we do not have the blue light issue.
  • I do mindful meditation right before bed, in bed in fact, to get me ready to sleep. I am all hyped up before sleep. My heart rate is rapid. My mind is wired. As a night person this is full alertness going on. I need to tame it down a bit. So I do some mindful mediation in bed for about 15 minutes and this puts me in a state that is prepared for sleep.
  • I take a sleeping pill. I have been on a sleeping pill called zopiclone (similar to lunesta) for a few years now. I was put on it because I was sleep deprived and getting numerous morning migraines as a result. In order to get some sleep at least I was put on this, and it does get me some. It is something to ask your doctor about if it is right for you and your health conditions.
  • Melatonin- I have been taking 3mg of melatonin at night in addition to the sleeping pill. I tried 5 mg and 10mg and they didn't work. I read a study that found that 3 mgs can work better on people where the 5 and 10mg did not work. And the 3mgs seems to work for me. Helps make me drowsy with the sleeping pill and I am able to fall asleep faster than normal (normal with a sleeping pill is an hour or so, without is two to three hours).
  • If I cannot sleep at all and I am tossing and turning and getting frustrated. I get up go for a bit of a walkabout, go to the bathroom, maybe read for a short bit and then go back to bed. Sometimes this relaxes you and you go back and find just a good position and are comfortable. It is a good trick and works for me.
  • I have tried the theory of only going to be when tired... does not work for me. I have insomnia for one and that would mean going to bed too late to get up on time. Secondly does nothing about the pain inhibiting my sleep.
  • I also drink a nice herbal tea before bed. A sleep time blend or a headache blend. Both are very relaxing and I doubt they do much but they have no caffeine and can't hurt.
So here is to a good, quality nights sleep!

Hobbies #HAWMC

Running and 3PM dance parties are some of our favorite hobbies at WEGO Health. Tell us, what are YOUR hobbies? Love to crochet? Can’t stop collecting rocks? Take photographs of everything? Share your favorite past times. 

I think hobbies are a pretty fundamental coping strategy to be honest. We all need our pain distractions and things we can get really into. Things that are just for us, not necessary things we Must do, but things we enjoy to do.

For me, I'm all about introvert hobbies.

I have been an avid reader since I was a wee kid. I love fantasy fiction novels. I consume books. And hoard them as well. Although the Kindle has helped with my hoarding tendencies slightly.

I also love writing. I write fantasy fiction novels and self-publish them. I am working on the third in a series right now. Nothing better than reading fantasy than writing it. Getting absorbed into a world of your own creation. I write non-fiction as well and those tend to be health related articles. However, fiction is a true pleasure of mine.

This is my writing blog: The Hermit Also feel free to check out the novels I currently have posted on Amazon. This is the first in the series; an urban fantasy fiction novel White Witch Where Art Thou? If you do pick up a copy feel free to review me on Amazon, as it is hard to get readers to review and I could use some reviews since I dropped my pen name.

I also love blogging. I have developed this blog for many years. Cultivated it. Grown it. And I think it is getting better every day. It is something I am passionate about for sure. Partly for raising awareness and partly because I enjoy the act itself. I would not consistently be doing it if I did not enjoy it.

Finally, part of my raising awareness is running my Facebook Page Making Invisible Disabilities Visible and also helping admin Migraineur Misfits Page. Part of that is finding research to post on them. But I also create images, memes and posters... and this I think is a creative outlet for me. It has become an interesting hobby for me. I could just share images from other sites, but I take pleasure in creating my own. I also from time to time write poetry and put that to images to post to either of these pages.

You might notice none of these hobbies require me leaving the house. As I said, all my hobbies are introverted ones. I make a fine hermit really.

Travel Time #HAWMC

If you could travel anywhere in the world, where would you go and why? Maybe you’ve already traveled to an exciting place and want to go back. We know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great! 

 I have always enjoyed travelling to Scotland. I have family there. I love the history. I love the nice, cloudy, rainy weather... sun and migraines just do not get on so well for me. I have been there twice in my life and would love to go back. I have also taken a short trip to Ireland and would also love to go back there. In my books you can't do better than lush scenery and ancient castles. Just my thing.

When it comes to trips it is very important to remember these are to be enjoyed. This is a time to de-stress, relax and enjoy yourself. And that means trying to reduce all the stresses that come with travel.

  • Medication: travel with all the medication you will need, then some, and all the OTC medication you May need because your body is more stressed than usual.
  • For migraines: Always travel with hats and sunglasses. A major Must.
  • Stay hydrated at all times.
  • Take plenty of breaks. And pace yourself.
  • Never feel like you need to rush. This is a vacation not an expedition into the great unknown. I tend to want to take my vacations at a mellow pace. One to two events per day, with extended breaks in-between. And I take my time doing things. I do not fear taking breaks.
  • For me in particular I cannot just go out into the boonies and camp. I need amenities near by due to my rather delicate digestive system. Camping I have also found to be too painful even with air mattress and foam overlays. So instead, because I do enjoy nature a great deal, we choose to go into the mountains and rent a little cabin for a few days. You have to choose to adapt your vacation to your illness and needs. I enjoyed that mountain trip immensely even though I was sore from walking a bit too much and had to take breaks due to migraines. Camping though, I do not enjoy so much. It is too much of a strain on my body and I cannot relax at all or enjoy myself.
  • I tend not to fly but when I must I give myself recovery time, because I Will get a migraine and I Will get vertigo from the flight. So need some immediate down time.\
  • I prefer road trips but even with them I do not do drive through the night type trips. I take my time. Spend the night at motels. Give myself the time to get where I am going and make the journey part of the trip, because rushing is painful. Sitting down too long without stopping for walking breaks is very painful for me. So the journey itself must be paced.
  • Above all enjoy yourself.

#Stress awareness month #shakeitoff #HAWMC

What’s the best way you deal with stress? How do you like to let loose to escape common stressors? Share with us your favorite ways to shake off the stress. 

 I think stress sticks to people with chronic illness like static and it is in our best interests to do all we can to shake it off. A difficult thing to do at the best of times I think, since chronic illness itself and chronic pain itself Causes stress to our bodies.

Get in the groove: Every night before bed I put on some tunes. Music can really boost the mood and I think in itself be a way to cope with stress. Shake it off a bit.

Zen out: Likely the most productive tool I have right now to combat stress is doing meditation when I can, every day, sometimes twice a day. It helps combat the pain and relaxes me. Helps me cope to be honest.

Nap it off: Generally if you have insomnia you should not nap and if you do it should be before noon and short in duration. However, I feel that there are exceptions to this rule and the exception to this rule is when I feel mentally and physically run down. I am in pain, there is no way to treat the pain. I am tired and fatigued. A nap sometimes is something that is beneficial when my body is feeling exceptionally stressed. I do not do it often because I do not want to overly affect my crappy sleep cycle, but when I do I fell better for it.

Take a soak: I am more of a shower person because hot baths make me dizzy and tired. Just have wonky low blood pressure. But there are times when i am sore and stressed that I want to have a good soak in an Epsom salt bath for a bit. I find it very relaxing.

Distract the brain: I likely utilize this more than anything because stress for me often comes with overthinking about things I can do Nothing about. Therefore it benefits me to do an activity that takes some brain power away from that over thinking. Like maybe just reading a good book. Or writing. Anything that actively distracts the brain.

#Survival #mode and my little rant

I have been in survival mode before. For years in fact. I am not at this moment, thankfully, but this poster struck me.

When you are in survival mode it is very much a life by inches. You are living moment to moment just trying to get through the pain. Time ceases to flow in a proper manner and it is hard to remember events clearly as it all gets tangled up in the pain. You do things all the while thinking 'Just have to do this, and this, so I can get home and suffer in peace. Just in peace.' It has a quiet desperation to it. A silent scream.

It is not meant to be how you live. No one can survive like that. Or want to. And I should put that distinction in there... you don't want to survive like that and really are just making up excuses to live at all day to day, or reasons not to.

At this point it should be of utmost importance for medical professions to really, Really put some significant effort into improving your quality of life. They ought to know that pain itself is a suicide risk after all. Yet, time and time again, I have had and others I know... 'Sorry, nothing more I can do for you.' Or they ran out of ideas. Or they don't know what to do. Or maybe they will send you to a specialist that will take a year to see and He will not have any idea what to do. No one has a clue so no one does anything and you just have to grin and bear it. Just push through the pain. Until you can't. I remember one time when I was immersed in this survival mode a neuro I had seen for a few years told me he ran out of ideas and there was nothing more he could do for me. I cried when I left his office. Just felt consumed by a sense of hopelessness. And we need hope. Even a sliver to get us by. We need something to aim for. Sometimes all that Got me through was knowing I had a neuro appointment coming up, even if it was a year away... thought if I could just get to that he would do Something.

It sort of ticks me off when I think of how many years I lost to that level of pain. And at any moment could again, but lets hope not. Think of all the things you simply are not capable fighting high levels of pain every day. The level of fatigue that comes with that. You just become incapable of socializing of pretty much anything beyond the essential and necessary. Mind you, I wasn't doing so good with the essential and necessary either. That is because the whole 'push through the pain' only actually works for short durations, or durations with a pain break and not for long extended periods of time. It takes too much of a toll.

It should not be acceptable. I think about this opiate pain crisis and what I think about is all the pain patients that will be denied treatment because their doctors are now afraid to prescribe medications. People seem to forget that pain needs to be treated. Treatment is complex and more than just medication, yes, but it is also medication. To allow people to just suffer and fall into this survival mode is horrific. It is saying that as a society we find it acceptable for people to suffer. For pain patients to kill themselves because they were in too much pain for too long with no hope of treatment.

Maybe survival mode should be instead that point where you get aggressive treatment from medical professionals. Multidisciplinary treatment that covers all aspects of chronic pain treatment. That helps people survive. Helps to save lives. That would require, of course, more doctors being educated about pain. More pain clinics. More pain clinics with well planned Multidisciplinary treatment programs for pain patients. Specialists at those pain clinics who understand the role of medication and do not have a fear of pain killers.

Summer is coming... soonish #HAWMC

What are the 3 things you look forward to the most in the summer? Whether it’s travel, the weather, family cookouts or another activity, share with your readers why you’re excited for summer! 

Anything not to do with winter is awesome by me. As a Canadian I cheer when the snow finally departs. Yay!!!

Although what I love most about the summer is:

Vacations: I am not one for taking long vacations. Usually split my vacation time up into small chunks for trips to see family and to just get away. Sometimes we will take a trip into the mountains, which is a fairly close journey from here, to just get away. Now those are some peaceful, restful, scenic adventures. I may be a little more tame in my 'adventures' due to pain so I cannot go on a massive hike, but I do a fair bit of exploring for fun and walkabouts.

The Get-Together- I love little gatherings at the house where we invite a small amount of people over and we set up a fire in the fire pit and chill for the night. It is a great way to socialize since I am right at home and it is comfortable. And who doesn't like a good fire?

Getting outside- I like being able to go for a short walk for exercise. Or when I am up to it for a longer walk around the lake in town. It is just refreshing to be able to get outside and get some of that nice air, rather than always exercising on the stationary bike.

Life Goal #HAWMC

What’s one thing that your 10-year-old self thought you would do? Can you still do it? How would you approach it to make it happen? 

I honestly do not remember my 10 year old self that much, but by 12 I wanted to be a writer and I know it was before that as well.

I can still do it but I have an issue with editing due to fibro fog and cognitive issues with migraines. Leads to some bad word days. I can write up a storm with a migraine and in pain and it is fine for a pain distraction as well, but then when it comes to editing there are some odd errors in there. Some of which spell check catches because I tend to mix up my letter placing by transposing letters, or numbers for that matter, but what that does is clearly make a work spelt wrong. But in other cases I will use the wrong word, but something that sounds similar, a sort of migraine aphasia error that is not always picked up unless you use the grammar check. Then there are just other odd little errors my brain likes to create. So takes a lot of editing.

I write a lot of different types of things as well. Keeps my brain fresh. This blog though is something i keep up all the time. There are a lot of aspects to blogging that I really enjoy. The community of it. Interacting with other people with chronic illnesses. Getting a chance to explain my experiences and thoughts about chronic illnesses. Working through some of the issues I have. Keeping up to date on research and articles. All of it is important to me. And writing is the way I really choose to express myself.

Really the more I write and publish the better. I never seem to make much income at it but fundamentally it has a lot of value to me anyway. Just something that keeps me mentally and emotionally healthy.

#Bad #Days

Had a bad day today pain wise from the moment I got up to now. It has made me pretty moody all day today. Could not really lift my spirits so I read a lot instead. Just trying to distract my brain.

It worries me though this melancholy mood. Likely part of the migraine prodrome or from the pain level, so common enough to get. It is just that it is familiar to me. It is familiar to feel a mood like this from working. From dealing with the increased pain and the fatigue I would get bouts of depression.

Today I was thinking the goal of chronic pain seems to be just to make existence bearable. That is our main goal. One we do not always succeed at. Just bearable. Not great. Not awesome. Bearable. And it occurred to me I don't even understand how people enjoy life. I just try to manage the pain. That is what I do every day. I do not take enjoyment from my day. It is just something to get though with the least amount of pain as possible. I don't even have the concept of what it feels like to be pain free and apparently how people enjoy that existence. It is vastly different than mine.

Of course, I am thinking all that because of my current mood. Which is just not in a good place at the moment. But the affect on my mood is worrisome to me. It is something that was common when I was working. Something I was concerned about and for good reason. I find it to be a bad sign.

Get Excited? #HAWMC

What revs up your internal engine? When you see, hear, feel this it gets you excited and ready to face what comes next. Tell us what it is!

I have to say, I spend a lot of time trying to just be calm. Calm in the face of pain. If I can manage to be mellow, I am happy. I can't really think of too many things that make me excited because I tend to avoid overt excitement. Anything too stimulating to the senses tends to be a massive migraine trigger. I don't avoid all triggers for the sake of avoiding life, but I do aim for some mellowness.

I really just love to be in a good mood. In the face of pain I want to be in a good mental place. I want to laugh and have that laughter be authentic and not a mask I wear, which sometimes, it is.

Although, there are times I want to put myself in a really feel good place. And like most people in the world I respond to music. I will put on some good bust a groove music. Feel good music. I will go a gooofy dance, dance like no one is looking sort of dance. Sometimes at night I will put on some good tunes to relax to. At those times I prefer some good alternative rock.

First day back to #work!

I returned to work once again after my long term leave. It is strange returning to work after a long term leave. Skills stagnate and become rusty, as I learned quite quickly. Things I knew like the back of my hand are sluggishly returning to me. That in-itself is immensely frustrating to me. Having to work without to knowledge just being on hand and the immediate information at my finger-tips is difficult. Makes me slow and hesitant.

Like I suspected would happen my pain levels have risen. That is a pretty obvious outcome to returning to work. However, I have been able to moderately manage the pain with mindful meditation. Just not always successful depending on the level. It does seem I can slow the migraine down such that most of work is migraine free. All of after work is not.

This is my first day off and it has been a low pain day. I managed the migraine very well indeed, as I have been learning. But also was in the nice dark house and didn't have to go anywhere. These things count. So I am aware that working changes factors and not in a good way. I just hope I can compensate for the change the best that I can. Enough to make a difference. A manageable difference.

I will know more as time goes on because one vital part of this puzzle is sleep. If I start being unable to get enough sleep then the migraines will respond in a negative way. And all hell will break loose. But if I manage to sustain good levels of sleep with the methods I am using then I have a way to sustain this new coping strategy.

I do feel that I may need the botox I mentioned to the pain clinic though. Work is one of those factors that makes a large significant change to things. I want to be prepared for that impact. But that is not until later this year.

One thing I had not taken into account is the level of overall fatigue I have to combat every day. Pain is draining. Sucks so much out of a person. Not sure how it is even humanly possible with the pain and fatigue to exercise after work. I tried and it was too much for me. On my days off, yes, I can. But not on work days. Just too much. So not sure what I am going to do about my exercise routine. I don't want to push my limits.

I feel best when... I hit the zone #HAWMC

W rite about moments you feel like you can take on the world. Where , w hen , and how often does this happen? 

There are times when the pain does not win. Days when I do not have to combat the negative thoughts and emotions that come with high pain levels. Times when I feel like I have the motivation, hope and inspiration to progress. I feel like there are Possibilities I can take advantage of instead of limitations.

It generally happens when the pain is in the 5-7 range and no higher. Higher than that and I am fighting to manage it more. Managing it requires a lot of my effort and not a lot is left over for other thoughts.

So it is in a pain range I feel I can exist in without being plagued with negative thoughts about the pain, which leads to negative thoughts about life in general. Which means I am open to things. To experiences. To possibilities. Unlike other times I feel there is potential instead of stagnation. I often feel motivated to carry out my pain management plans at this time. Eager to make progress. Hopeful that there will be progress. It is at this time I can carry out other activities. I am at my most creative. I do writing as a pain distraction, but in this zone I am far more creative and get more done.

And really what I am talking about is the perfect zone. Of a manageable pain level (hell maybe even a low pain day!) and being able to frame that pain in a positive manner, therefore my outlook on life is more positive as well. Often my mood is dependent on how I react to the pain experience. That is why it is so important to challenge negative thoughts when they occur. However, when you are in the zone you are in a place where the pain is not winning or ruling your thoughts. It is not affecting your emotional state. You are free to exist without its entanglements. And this feels freeing. Obviously there is pain and obviously it still affects thinking and concentration to a point. And a migraine is still a migraine, so there are all the cognitive issues that come into play. Just like fibromyalgia is a constant factor and fibrofog can come out to play on the lowest of pain days. However, on a day where the pain is not in the forefront of my thoughts I can put it aside and pursue other things, while keeping in mind moderation and my limits of course. It is an energizing feeling that can be dangerous in the sense you do feel like you can do more than you Actually can. That is the case for actual low pain days in the range of 5 or so... do way more than you actually can and that pain will spike off the charts. So you have to reign in this sense of 'I am Winning' and just have yourself a really good, productive, feel good day without overextending yourself. I like the feeling though. I like that hopeful, motivated feeling I can have that suggests I can succeed. I can accomplish things. I do have possibilities in the world.

It doesn't happen often enough to be honest. I wish I didn't react to pain. I wish it was just a sensation in the body rather than an experience. But it is an experience. It is both the sensation and our reaction to that experience, we are wired that way neurologically. So bad pain days can lead to difficult thoughts. Good pain days can be better mentally because in comparison, relatively speaking, we feel relief from the decrease in the pain and that gives a freeing sensation temporarily like we can conquer the world. Ironically it is still some significant pain there, just not as significant as a bad pain day. I welcome all the low pain days I can get quite frankly. I feel more connected to the world when I am in less pain.

#Stigma and the perfect comback #HAWMC

Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what would you have said to take back control and let them know they were out of line? 

 The times that I felt the most stigma was when I was working before my long term leave before I was transferred to a new location. I don't like to name companies simply because I still work for them now and they might believe I am slandering their name. It is not that really. More so it is a lack of training in how managers should respond and act towards people with disabilities.

In my case, they didn't even consider me to have a disability they could help me with or accommodate... because it wasn't 'physical'. So that is a limited view of disability. I offered a lot of compromises to get me through this real rough time I was having with pain and medications but all of them were declined. That left me unable to do anything but push through the pain full time. And when I could not, when I missed too many days. I got ultimatums. Miss a day... and there will be this dire consequence. Other vague threats as well... like since I was disabled and the economy being as it is I will be the first to be laid off so I should just do better to show that I am better. But I was Not better.

It was all extremely stressful for me. Unable to work full-time but having to work full-time. Always failing and calling in sick at least a few times a month. And feeling insanely guilty about it.

I wanted to say when I go on a short term leave, which I had done more than once, I do not come back cured. I still have this chronic condition chronically. I wanted to say that you need to treat people with disabilities with respect. And to motivate. Not ultimatums and threats, because we are already really stressed out about something we cannot control and it is not helping by forcing us to do something we still cannot control. I would suggest they rather think about some of the compromises I offered, which are reasonable for someone who is disabled and unable to function fully but would be able to be much more to their capacity with some changes. Not forever, but until they got the treatment they needed to cope with their condition. I wanted to say there is Nothing Wrong with making compromises in the short term to benefit the health of your employee. Rather than threats and ultimatums, painting them into a corner where they get so stressed them pay feel hopeless, desperate and suicidal... as I did.

I am not sure if it was management or upper management. Either way I would tell them to consider more options for disabled employees. When they are at their worst they do need some extra support. Not to be diminished, made to feel like it is their fault they are ill, and that they are letting down every conceivable person they work with and deal with as a customer by missing work.  People with chronic pain and other illness have a high rate of suicide. Makes more sense to motivate and accommodate, than it does to break down and threaten when you may be making someone who already feels bad just that much worse.

Day of Rest #HAWMC

Kick your feet up! What is your ideal day in? When you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself? 

I like to practice mindful meditation to relax any time I feel the pain creeping up or when I am stressed out. I try to do it twice a day and it is even more important now that I am working and experiencing more pain. It is something I picked up from the pain clinic and have been doing only a short time. I have tried a few types of meditation over the past year and this is the one that works for me. Just gets me in that zen zone. I focus on my breathing. In particular I like to focus on the in and out of my stomach as I breath. If a thought occurs to me, I let it, but then just gently redirect myself back to my breathing. Then if the pain is particularly unpleasant there is something the guided meditation tell you to do and that is to breath into the pain and then release it. It seems that at the time it brings the pain into focus yet at the same time when I breathe out I can feel it diminish slightly. However, what I like the most about this is that about half an hour after I have done my 15-20 min meditation the pain itself goes down. Not all the time and those are the times when medication and other methods are necessary, but enough that it helps me manage the pain lately.

Like most people I love to distract myself and relax when I can. The choices I have for doing so are activities like reading and writing. Some people find they cannot read with a migraine but I am an avid reader and have found a way to push the pain aside to get into a story. That being said there are times when I have 'bad word days' and on Those days I read what I call 'fluff books' that have simplistic plots and require little thought. Sometimes it just depends on what you read. And to be honest I cannot read non-fiction with a migraine. Takes too much concentration. I also love creative writing and blogging as a way to relax or distract myself from the pain. Blogging is one way to express my experiences and in that way you can work out a lot of what you are dealing with. I find it pretty healthy way to cope. Like writing a journal is and in the same way. Creative writing is a different sort of outlet for me but something I can get into; get my mind focusing on something else. 

Pet Pal #HAWMC

Write a thank you letter to your furry, feathery, or fishy friend for always being there for you. How have they helped you cope with your health condition? 

 Thank you Franky, Bobby and Charlie,

For always being there as snuggle bugs when my brain is full of pain. Hearing your purr as you lay on my face, my head or snuggle in my side is always soothing. You guys make me laugh with all your antics. You make me smile every day. Lift my mood. You help me relax and insist on pets and snuggles.

I think pets all help with chronic pain and illness. They give us unconditional love and attention. Make us laugh. Make us smile. Give us some love and attention. And we love them.

Comfort Food #HAWMC

We’re not all 5 star chefs, but we all need to eat! Tell your readers how to make your favorite dish . Does the recipe hold a good memory for you? Is it the act of cooking itself that brings you joy, or the people that come together to eat it ? 

I am not really a good cook. Not so much. Comfort foods for me are things I used to make when I was younger. Like the first things I learned to make. So usually breakfast sorts of things. It reminds me of times when I was younger coming home from lunch and making it. Reminds me of my mom making it.  But there is no joy in the act of cooking for me. It is just a functional deal for me.

My favorite is French Toast.

To make it you just take two eggs and mix them in a bowl. Add a smidge of milk to make them fluffy. 

Take bread and soak it in the eggs mix until saturated. And fry in a frying pan on medium. Add cinnamon on top for flavor. Nutmeg as well, I just don't have any on hand.

I also love to make omelets and pancakes but do not get to make them often. I do love having breakfast for supper.

Challenger #HAWMC

Shar with readers about a time you had to overcome a daunting challenge. What words of encouragement would you share with others who find themselves facing similar difficulty? 

 I think I could quite honestly point to a few times in my life that have been rather challenging due to chronic pain and illness. However, other times where things were managed quite well.

So the challenge is when things are Not managed well at all. Then life's regular stressors and obligations are there and you cannot meet them or handle them. My recent journey on this adventure is when my chronic migraines became daily, with the fibromyalgia, and trying to continue to work full time.

I could not do it. The pain had exceeded my coping strategies. So I tried to push through it... to get to the next years neuro appointment in hopes he would help. He did not. So I would much through it, in hopes something else would help. Nothing did. Pushing through it though just causes a lot of mental and emotional strain. And inevitably I would fail at the first status migraine every month I would miss work. So every month I was missing work. My employer was less than pleased, and yet declined all my compromises. My doctor was indifferent. I felt like there was nothing I could do, but suffer eternally and fail. This lasted for years. I struggled like this. Until I gave up and tried to kill myself.

After that I realized if anyone is going to change these things it is going to be me.

So I:
  • Got rid of indifferent doctor and got new meticulous doctor.
  • New doctor sent me to new neuro and to the pain clinics
  • New neuro also said I needed pain management and sent me to his pain clinic.
  • Pain clinic assessed my medications, changed them a bit. Had me on an exercise program. And in a program called pain 101. 
  • I started seeing a pain psychologist- to help with meditation and biofeedback and so forth.

When you are struggling at work because your pain is not managed. You need to assess your situation. Assess your doctor situation and if he is a doctor who works with you. You have to assess your work conditions to see what sort of accommodations they could allow for you. I know in the states they have something. In Canada we don't. But ask about hours, flexibility options, telecommute options. Seeing a psychologist at this time is also a good idea. They can help pain patients in a lot of ways. And you could see if there is a pain clinic available that might work for you.

However, without accommodation of any sort from an employer I had to go on leave. And that might be the same for many people. It is never good to be gone for long periods of time. Your skills get rusty. But if necessarily, as you cannot function at work, and need to see specialist to assess you then it is a something that gives you the time to undergo treatment option.

Essentially I was stuck between an employer giving me ultimatums I could do nothing about unless I cured myself and a doctor who was really rather disinterested in my care.... when I was in the most pain of my entire life. As I said you do what you can to resolve it on the employer side of things but not all employers are made equal. Some will offer accommodations that will enable you to keep your employment while seeking treatment. Some have no idea what accommodation means. Once you decrease the stress on that side of things you see what is available for treatment from a neuro and a pain clinic. And if Canada, what a year to see them. Then start the treatment they offer.

My main challenge was that I wanted to work. I liked to work. It gave me purpose. But I was not functional enough to work full time. Just wasn't. And I denied that for such a long time. Just kept pushing and pushing at it, like that would work. If you know your pain is not managed, take the steps to get it done. If that means going on a leave, or working part time or flexible time... then so be it. When pain isn't being managed it is our Alarm. It tells us we need to change something in our coping strategies. Tells us we have to change how we are approaching the problem. Always listen to that.

Things remembered #HAWMC

What is an item you have kept with you that reminds you of an important time in your life? Whether it was a good day, a stressful time, or a happy moment… why does this item remind you of that period of your life? 

Oddly enough I have a real hard time answering this question. I am just not that sentimental I guess. I have a cluttered house but it is mostly books. And I have books I have hoarded since my teens, because I love them that much. I will read some books over and over and over.

However, there is one other thing that I hoard other than books. Writing. I weed through it once in a while but I collect a lot of things I have written in the past. A sort of mental imprint of that time frame. Essays I have written even. I consider them to be like memories to me. So this blog serves the same purpose. It is slices of time, memories, all stitched together of my writings. As such it reflects the good, the philosophical and the bad in my life. I can take a peek back in time, into a specific mental state, and remember exactly what I felt in that moment.

I like a blog for that purpose really. I am a very introspective person and there are times I do want to reflect on past states of existence, but to also remember exactly how I felt and why. In particular my darkest of times. I want to know how to build resilience. I want to know how to cope in similar circumstances. So it is good to remember what I went through and how I overcame it. Sometimes coping is knowing we have been to some dark places and came out the other side. I like keeping a record of that process intact for others and for myself.

Your Hero #HAWMC

Everyone has someone they look up to - a person they go to for advice, an individual you admire or idolize. It could be your partner, a family member, coworker, or someone famous. Who are they and what makes them awesome in your eyes?

I find a lot of people awesome to be honest. A lot of people I know with chronic migraines or fibromyalgia, or both, that live complicated lives that I really respect for their strength and perseverance. While there are others who promote awareness that I quite admire for their knowledge.

Someone I admire a lot would be Teri Robert who has written books on migraines as well as been a long standing migraine advocate. Back when my migraines were high episodic and I was beginning to realize triptans were not quite the solution I needed I found Teri on a site online. I was able to get a great deal of information from her articles and forum that I lacked. Information my doctors had not provided. Like the fact using too many triptans a week could cause rebound headaches. That was quite important to know. Like the fact I should already have been on preventative treatments. What migraines really were and what their symptoms were. Just the full scope of information you could need to be an informed patient. I also gained a lot of support from that forum that I needed at that time. It is quite frustrating when you are high episodic and moving into chronic because things are changing, not managed at all, and you have no clue why. There was a very limited amount of information to be found online at that time as well. Quite a bit more now, not sure if that is better or not, since you have to weed through the crap. She currently writes for Health Central.

So it is through the information on her original site that I became the informed patient that I am now. I respect her as a source of information over and above a great deal many other sources on the internet. In fact she reviews a lot of sources you find on the internet and books as well.

I think that having contact with advocates like that really helps those of trying to raise awareness any way that we can. We become better for it I think. I think advocates like Teri really inspire those of us that run blogs, forums and pages. Now I have a pretty good list of advocates I admire and respect but Teri influenced me as patient first and then as a health activist, so that is special to me.

*Now the first time I was asked this question on a similar campaign I answered that it was my mom. So I am going to give a shout out to my mom who is my person advocate. Who has my back at all times. Who I can ask for advice and helps me out when I need it. She has chronic pain as well and kicked cancers ass. A pretty awesome mom!

Breaking #HAWMC

The top story of today is…YOU. Share with your readers your proudest accomplishments in the last 5 years. Don’t be shy, tell us everything! 

 It has been a rough five years to be honest. Just coming off a long term leave from work which was necessary but difficult in many ways.

Therefore, I have tried to keep busy with things that I know improve mood and keep me inspired.

I love to write. I blog, I write fiction and non-fiction. While I was off I finished the second book in a series I am writing. It is called All Drugged Up (Smashwords editions) and is urban fantasy fiction. I also wrote another book in that time frame but it has yet to be edited. Writing fiction is very much escapism for me. Just developing an entire world and characters I can delve into. It is a great pain distraction.

I also started my Facebook group Making Invisible Disabilities Visible about four years ago. With 3500 likes to date! Originally I shared content I found but then I learned to create my own images, so I do a lot of that. I also share as much research information as I can, without overloading people. Mostly my areas of focus are chronic pain and invisible disabilities, but I will share about specific conditions at times since I do come across a great deal of migraine and FM related topics.

I also began to help with the Facebook page and group Migraine Misfits. I admin on their public page for Saturdays and create content. I admin in their Closed group on Saturdays as well. I enjoy raising awareness for the topic and keeping up to date with research. Plus I also enjoy creating content as it is a way to express creativity.

I recently started blogging for Migraine Checked and this is my intro post with them. They don't pay me for it, but they do give my social media contacts, it was more for something to do that interests me. I enjoy blogging, so I thought some specific migraine posts for their site would be interesting.

I write non-fiction articles for and have since 2013 on Fibromyalgia. It is a way for me to keep up to date on research and a topic I am interested in of course.

So mostly a lot of writing and raising awareness is what I have done in the last five years to be honest.

Here is poem I wrote an put on my page. I write poetry in my spare time.

Creature of #habit #HAWMC

What good habits, (health or otherwise,) do you have? Do you have a routine that you follow every morning? Are there any bad habits you wish you could break? 

There are a couple of specific good habits I have that are good for my overall health.

Exercise: While I only do about 20 minutes a day it did take me considerable time and effort to work up to that. Exercise is something that is recommended for pretty much every chronic pain condition. For me it was suggested for chronic migraines and they also figured it would help with the fibromyalgia as well. Specifically aerobic exercise. Prior to doing that I was walking and doing yoga, which frankly, I see as perfectly fine as well. There are a lot of suggested benefits from mood, to helping with sleep to the endorphins released to help with pain. I actually don't see much benefit to it to be honest, but I know overall it is better to exercise than to not. And I know lack of activity can make pain worse.

Meditation: I do mindful meditation about twice a day. Ranging from 15 min to 20 min at a time. Again I know there are a great deal of suggesting benefits overall but I do it for chronic pain. It has in fact helped with lowering my migraine intensity. That is a benefit I will keep on doing it for. I also know stress can impact chronic pain so I think there is a lot of value in de-stressing.

Now, we all have our bad habits and I could probably make a good list of them as well. However, if there was one I were to pick that I would like to stop that would impact my health for the better long term it would be smoking.

Random Acts of #Kindness #HAWMC

We love random acts of kindness. Write about a time that you benefited from the kindness of a stranger , or a time when you were the one extending a helping hand. How did you feel? 

 “The smallest act of kindness is worth more than the greatest intention.”
― Kahlil Gibran, The Essential Kahlil Gibran

I have benefited from the kindness of strangers, family, friends and co-workers and every moment of kindness counts in this world.

However, when it is in fact from a stranger it does stand out because there seems to be no reason that person would go out of their way to help you. There is no connection. They act for the act itself and that makes it pretty powerful.

I once worked in a hotel at the front desk right when my migraines were becoming a problem. By that I mean more than chronic. To the point where you can no longer even treat every on because taking that much medication may make it worse, so you have to endure the migraines full blown. Which I did and had and continued to do. However, at this time, unlike now I used to get powerful bouts of nausea with migraines that would could lead to a lot of vomiting. Like you just could not stop. I had yet to be given any additional treatment to help with the increase in migraines. I had yet to be changed from a triptan pill to the sort that melts, so that it would act Before I tossed my cookies. So this was a troublesome period.

I was working Christmas Eve, which is not an issue at all for me. What was an issue is one of these migraines occurred. And I got violently ill. To the point of really being unable to help customers. The hotel manager had to help me out. And every customer I manged to help noticed I was pale, shaking and rather green around the gills. The manager went out of her way to get someone to come in and take over the rest of my shift... but being as it was Christmas Eve there was no one to be found. I resigned myself to this fact. This horrible, horrible, run to the bathroom every five minutes fact. But what can you do? Nothing.

Then comes in a guest that used to work in the hotel years before I started working there. He was in town for something. I didn't sign him in, being as I was preoccupied in the bathroom at that moment. So the manager does so and she knows him well. I have no idea what they talked about only that when I come out all shaky and trembling once more, he has volunteered to take the rest of my shift. Someone I have never met. Don't know. Someone who is on holiday and certainly could not look forward to working instead. I am not sure how much time I had left on that shift, as that is one detail I will never be able to recall in the pain fog I was in. Just that I could go home to hide in the dark and be sick in peace because this man saw how sick I was and volunteered his time.

Frankly I was stunned by his kindness. And I don't even know who he was. I doubt he will ever know that I appreciated it as much as I did. Fact is, I also appreciate the way that manager was to me. Never once criticizing me or my pain or my illness. Managers like that are hard to come by. She was a woman I really respected and did my damndest to earn that respect back. A lot of managers would not have cared about my suffering in that moment. Not one bit, except the cost to them. Not her. And not that man.

Turns out my doctor was certain my migraines got worse due to the shift work on that job. Wrecking havoc on my already disrupted sleep cycle. He temporarily put me on pain killers in order for me to find a new job, as in, I could not longer work there or shift work that extreme.

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