Tuesday, October 28, 2014

#pain and #suffering in #images

These are some of my favorite images that resonate with me on the topic of pain and suffering. There are quite a few more but I limited it to these for the post. Artwork has a power to it that we can look into it and see our own suffering there. We can relate to the experience represented, even if it is not that one. It moves us in different ways.

Tina Klitgaard Eriksen


Oswaldo Guayasamín was an Ecuadorian master painter and sculptor of Quechua and Mestizo heritage

Tia Danko

Miles Johnston

Pain Inside by justcallmemike


Agony | The Art of Randy McDermit


Pain – Mariusz Lewandowski


Migraine Art by Olea Nova.

The headache by

Guy Denning


Monday, October 27, 2014

#allodynia strikes again


Not a good pain day.

I woke up in the middle of the night last night with this pain from my ankle to my knee. Random pain. No idea what caused it but it lingered for a bit. Sometimes you just never know what the cause of these things are. Sleep position? Who knows right?

Well, I wake up and I had that pain I have been having in my ankles. That I expected. My leg hurt. I was not sure why. Thought maybe I had slept on it funny.

Then the pain Really starts. I get that horrible skin pain known as allodynia. Burning horrible skin pain that can strike anywhere. I have it on my scalp... makes washing your hair a real not pleasure. I have it on my lower back, right side. Same side my leg hurts so maybe that explains that. And I have it on the same side on my forearm.

Worst of all, I have it on the bottom of my feet. The Bottom of my Feet. I have been hobbling around since then because touching the ground is very, very painful. Not touching the ground is Also painful, just not As painful.



It is really hard to say what flares allodynia up. Because it is known to happen with migraines. It is known to happen with fibromyalgia. And I have both. So who knows. Also I am decreasing my fibromyalgia medication Lyrica... and that can be a factor, I just don't know if it is yet. If the pain remains substantially higher for a substantial time, then clearly it is the lack of that medication. Otherwise it could be any number of factors when it comes to chronic pain. Like the weather changing. Like all the exercise I have been doing. Could be anything. Change creates the circumstances for pain. 

All I know is I have a special loathing for nerve pain like allodynia. Really do. 

Saturday, October 25, 2014

Don't make me #Invisible


I made some images to support invisible disability awareness. Nearly 1 in 2 people have a chronic illness and of those 96% have an invisible illness. That is a lot of us.

I focus on pain a lot though. Chronic pain is a brutal invisible illness and disability. It is poorly treated. Doctors are poorly educated in it. It can be doubted because it cannot be seen. We do not show the typical pain behaviors that indicate someone is in pain. We do not cry, or scream, or limp or use a cane... or not all the time. Because our pain is All the time. Live day in and day out with pain and you adapt in ways at masking it. We Feel it, but we mask it.

It can make a person feel invisible or diminished to have our pain disregarded and not treated. We feel like no one understands our suffering. That we are expected to just suffer. That no medical professional cares about this fact. I also often felt in the work place my employer thought my pain was significantly less than it was. That I must have simply not wanted to work. That if I just pushed through it I would be fine. I was not fine like that.

They all make us invisible. Our pain means nothing. Our words mean nothing. We are discounted. We are put aside. We are diminished.

Can you see me? I am Right Here. I am in Pain. Listen to my Words. Treat me. Just treat me. That is when you want to scream. It is like a long, endless scream that no one hears. Like you are a ghost that never gets anyone's attention.

Just help me manage the pain, I plead. Is that so much to ask? I know it will always be there. I get that. I just need it to be... less. And I just need to be... more. More me.

Don't make me invisible. That is all we want from them all. Don't make me invisible.


Thursday, October 23, 2014

Wait... this is not the #lifestyle I ordered


Instead we get the Chronic Pain Lifestyle. That is a rough deal but it is the one we got. We can mourn the fact we didn't get the one we requested.This can be a difficult task really. We are constantly making adjustments for our health and it almost seems like our health is what is ruling our life choices. No one likes that feeling.

Fundamentally as a young person with chronic illness I had the feeling I could work around my illness. Or work with it I should say. I knew the limitations I had to live with but I thought I could achieve my goals anyway. One thing you just do not expect however is that your health will get worse and so that simply is not the case. You have to keep making further adjustments and compromises.

I simply do not like the fact that having the chronic illnesses I have compromises my financial stability now and in the future. I don't think I will ever come to terms with that. I always had the desire to have a certain comfort zone financially, which was not even that special, just that sense of security to know I could pay my bills and have a little extra left over for whatever and for investments. That is all. I like to live simply and the main spending I have is on books to be honest. However, chronic illness takes away that surety. And you live pay cheque to pay cheque. In my case I know I cannot work or I can only work part time and neither of these options is sufficient. However, the long term leave I am on now is better than government disability in Canada which is substantially lower. I would be hard pressed to live on that. How the government can even comprehend people can sustain themselves on that I do not know. And that is what people with disabilities (and some seniors) get to look forward to. This is not the lifestyle we wanted or chose. This was chosen for us.

I think sometimes about working full time just for the financial stability. Yet I fear it due to knowing what will happen with the pain, stress and sleep deprivation. It is simply and impossible state to maintain. I know people who do it and they feel the same way I felt. It is a horrible existence to live in when you have to, which some of us do. I call it an existence, because there is no life in there, just pain and surviving the pain. In my case, I had a lot of suicidal ideation in there because in no way would you want to live like that. Despite societies expectations. Despite the expectations of your employer. They can expect you to become healthy all they want, it does not happen. And you just yearn for an end to the pain.

So we are left mourning the lifestyle we could have had. This alternate life had we not been afflicted with this pain and illness. What would that life have been like anyway? How different would it have been? I imagine it would look entirely different. Ifs... are nothing though. Just dreams within a dream. They do not exist. We have to deal with the lifestyle we have.

And that lifestyle is the one we have to improve any way that we can. Fit some life into it. Lift our mood any way we can. Get out of the house at least once a week. Do something for ourselves. Reduce our stress any way we can. Don't feel guilty for being ill, you are doing the best you can with what you have. Make small changes in your life to make your life a little better.

Sunday, October 19, 2014

#Neck pain and #migraine

A 2010 study of 113 patients found that neck pain occurred with the migraine attacks more often than nausea, even though nausea is closely associated with migraines.
An informal survey of 144 people with migraines found that 75 percent said they had neck pain with their migraines, which is the same percentage that experienced sensitivity to light, sensitivity to sound and nausea. In this poll, neck pain was named three times as often as migraine aura and vomiting.
Type of neck pain in survey:
  • 69% felt tightness
  • 17% experienced stiffness
  • 60% said the neck pain came first Migraine.com

Neck pain is a migraine symptom. Not something that is cause from muscle stiffness, which can also occur. Sort of a two for one deal there. I have been seeing someone for physio on my neck to help with the migraines and it is frustrating. At times I can do the exercises fine, but right before and during the migraine my neck hurts like hell and I cannot. So that is a good portion of the day my neck hurts like hell. I was hoping the exercises would help with the muscle tension, strengthen the muscles and lessen the pain I am getting and maybe it will. But the pain that comes with the migraine, will still be there.

All day today it felt like I had strained it in some way. But that is just the way it feels. Lots of pain in the sides and a extensive amount in the back. Makes it hard to sleep.

A very undervalued symptom if you ask me. To me it is like all the pain we feel with a migraine... it Adds up. Neck pain, migraine itself, jaw pain, teeth pain, sinus pain, temple pain, skin pain, eye pain.... lots of pain in the Entire head area.


Thursday, October 16, 2014

The #fatigue machine

I know they say exercise will help with fatigue but I must say that does not seem to be working for me lately. Exercise has most definitely been increasing my migraine intensity so that likely is not helping.

You ever just get that insane fatigue that just seems to be compounding and compounding? Just getting nowhere... slowly.

Partly it is this insomnia and drowsiness combo. Can't sleep at night. Can't shake this drowsiness during the day.


Just have an insane time just getting up.


And I am dizzy. I have those black spots in my eyes and sparkles when I stand. I had thought the medication I was on had really helped with that, and it was, but lately just really dizzy. That is a component to this fatigue. You think am I tired? Hungry? Need water? Exercise? More sleep? What is it that will Help with this? You try everything to shake it and it is just there like a thick blanket.

Difficult to deal with all on its own because it is hard to get anything done when it gets bad. I have been motivating myself to exercise, as required by the pain clinic, but it certainly has not been helping me any.

Wednesday, October 15, 2014

Fighting #Overthinking

 Don't believe everything you think. Fact is it takes three positive thoughts to replace just One negative one. I think we dwell on those negative ones too. Spawn more of them. Get on that slippery slope of more and more of them.


I am very prone to this myself. It is the one reason I have started a Gratitude Journal to start writing down one thing a day I am grateful or thankful for... to focus on at least on positive thing. Helps get your mind thinking in the right direction and improves mood.

Poor Eeyore, always thinking the negative. I always did relate to him since I was such a cynic as a child. When I do get on that slippery slope of negative thoughts I usually utilize distraction as my tool of choice. Stop the thought process and turn it to something else that requires no thought or changes the thought direction entirely.

We are not always going to have happy thoughts or Be happy. That is a fact. But we can activity do things to manage those thoughts to help manage our mood the best we can. Like listening to some upbeat music. Or mellow music and doing some relaxing deep breathing exercises. Utilizing those distraction techniques also very important. Going for a short twenty minute walk outside. Or a short outing for coffee or tea with friends... a little socialization does wonders for mood. Just some ideas to consider.

Tuesday, October 14, 2014

Have a Thankful Day


It is Thanksgiving Day for us Canadians. The day when we ponder what we are thankful about and spend time with family. I didn't spend my thanksgiving with my mom this year because she was on a well deserved trip someplace warm. So my spouse cooked up a turkey dinner for the two of us and it was pretty damn good.

I am very thankful for a loving family. A mother like mine is pretty awesome. She always has my back and is there for me with any problem I have to solve or just to listen. She is a great support system to me.

I am thankful for my common law spouse who has stuck by my side for 17 years, in sickness and sickness. Who when we think about all the stress it causes for me not to be working would still prefer me Not to work due to the stress it would cause me to do so. A man that whips me up a turkey dinner and makes sure he buys a pumpkin pie because I was craving it.

I am thankful for friends that that I can socialize with a little and this makes me feel really good to get our of the house a little bit. But, when it comes that a migraine rears up, they are fine and understanding that I must leave early. Friends like that are hard to find. I like that they choose activities I can do... like playing cards and dice, over things I cannot like going to the bar. Going out is saved for exceptionally good days and they often do not stay that way, but I do it for them and my spouse on occasion. I appreciate good people like that. That helped us build our fence and offered to help us put down flooring. Pretty awesome.

You have to be thankful for the people in our lives that bring meaning to it. The rest... is just the little things.

I am also thankful for low pain days when they happen
I am thankful when a migraine waits a bit to strike so I have a bit of day free of it.
I am thankful that my vertigo medication works decently enough.
I am thankful there is not snow on the ground yet.
I am thankful I have been able to drive my car in town for short durations.

When I think of the benefits of daily gratitude I know we should be able to find at least one thing a day we are thankful for. Just one.