Our relationships and fibromyalgia

A 2013 study (Musculoskeletal Care, November 21, 2012) of 40 multiple choice questions was posted online with the objective to poll a large sample of adults with fibromyalgia about the impact on their significant other, friends and children. Questions included were regarding their symptoms, their demographics, any comorbid mood conditions, the relationship impact (with Relationship Assessment Scale). There were 6126 respondents to the survey who had been diagnosed with fibromyalgia.
  • -50% of the responders stated that FM had mildly to moderately damaged their relationship(s) with their partner or contributed to the break-up with a partner.
  • -50% of responders scored as not being satisfied with their current partner relationship with satisfaction negatively affected by the presence of mood disturbance symptoms and higher FM severity.
  • -Relationships with children and close friends were also negatively impacted for a substantial minority of the responders.

We know that chronic pain is not just something that we deal with. We know that it impacts our caretakers. We know it impacts those around us. Chronic illnesses are not isolated events which affects individual bodies; they are illnesses that affect individuals and relationships of all kinds We are talking about a long term stressor that is consistent. It is difficult on the individual. It is difficult on the significant other. It can cause some conflict or at the very least a lack of acknowledgement of both side of how difficult it is on both sides.
People can struggle with understanding an illness that has no end date and how to approach the topic, they simply have no idea how to respond or how to help the person they have a relationship with or even what to say about it. This can create a tension from the person with the illness because they may believe the family members, friends or loved ones do not care, are indifferent to their suffering or do not understand what they are going through.
Sometimes there is no way to bridge the gap. Our divorce rate is at 75% after all. However, it is always worth the effort to open communication. To inform those important in your life about your disability, your needs and limitations so they can understand it better. While you have learned to cope in various ways and learned a great deal along the way, they may not understand your process, know what you have learned, know your limitations or restrictions and until they do they cannot help you engage within those boundaries. It also avoids misunderstandings. Hurt feelings and resentments when you turn down events. They will know it is not them, it is your illness.
We also have to understand while we are affected by our illness, so are they and therefore our relationships to them are affected and must adapt. Not all friendships endure. We know that. Not every family member will get it. Not every relationship will cope. However, the ones that do are the ones worth the effort because positive, healthy relationships are our support system and are necessary. We should nourish those good relationships, appreciate them and acknowledge them.


a)      Blind to it: Sometimes family and friends will cope by simply pretending there is nothing wrong with you, as if by that simple denial it will go away or become less of an issue. They likely feel helpless to actually do anything about it so they want to believe if they ignore it, it will make it easier on you and for you to ignore it. Yet it is this apparent disinterest that seems like lack of caring and can really be hurtful and also it is very stressful since the entire burden is on you to pretend you are ‘all good all of the time’.It is very difficult for family to see someone they love suffer knowing they cannot help them. People have different ways of coping with that. Open communication is always quite important. If you state clearly what you need then they will understand what they can do.
b)      Acknowledgement: There are times with chronic pain we feel our partner doesn’t get how difficult it is for us to function and do daily activities. Yet we feel guilty if we do not do our share. Or some of the routine tasks of the household. When we do them and our partner doesn’t acknowledge the toll it takes on us this can develop into a feeling of isolation and resentment. More so if they asked why didn’t we do More? Likewise our spouse may have taken on more household duties to compensate for our disability and feel we do not acknowledge the extra effort they are putting in. This effort they are willing to put in but takes more energy and time on their part as well. When they bring it up though we could feel immediately guilty and this could make us defensive because of that guilt. Again there is a need for communication between partners so that this resentment doesn’t build up and arguments over these types of situations develop. When having a discussion of this sort it is important to not be defensive and understand that your partner is not blaming you for being ill. It is important to understand they do have valid frustrations and feelings and we should acknowledge their struggles with them and their extra effort. Always be open to ways to compromise in the house. Ways to accommodate chores and housework in ways that work for you.
c)      The retreat: Over a long term chronic illness friendships can be difficult to maintain. Friendships are a give and take and when a friend feels they are always the one makings plans and you are always the one postponing or cancelling it can be difficult. They may also see that you never are up for socialising or have much energy to do things spontaneously. They may feel they are the ones giving all the energy maintaining a friendship. They may think you no longer that time for them or they may simply give up on putting all that effort in. Slowly that friendship may begin to drift. Maintaining a friendship is great for getting us into the outside world, for socializing and preventing a retreat into isolation that can increase fatigue and promote depression. They play a vital role in our mood regulation whether you have a one or many friends. Whether you socialize infrequently, rarely or a lot. It is a good thing to communicate to your friends how much you value spending time with them and how important it is to you to remain connected to them. People like to feel that they are wanted around. On days when you are unable to leave the house you can encourage communication with them by other means of offer a sort house visit for tea. Help them understand that short, small ventures are easier to cope with; something along the lines of going to lunch or coffee. Whereas large plans that require significant time, travel and planning often are a lot more difficult and depend on health and pain levels. Remember you can make plans with friends that are more costly to you energy wise and pain wise as long as you plan carefully, pace yourself and give yourself the time to recover afterwards. Positive friends should be encouraged and maintained and they will understand your limitations and restrictions if you explain them. Friends that do not believe the extent of your illness or are a constant negative energy drain however you might want to consider rethinking. 
d)     Owning emotions: Family members, friends and loved ones can have a lot of emotions to deal with of their own. Emotions they have a right to. It can be difficult for us to deal with these at times. Sometimes it can be a simple matter of acknowledgment. However, there can resentment, anger and even more. When it comes to a family dynamic with children involves sometimes family therapy can help out. Once it is all out there it can be a real relief and from there a therapist will help in any way they can for coping with those feelings and how to deal with the issues that come up.

Letters to normals
Letters to normal are letters that explain chronic pain or fibromyalgia to friends, family or partners so that they might better understand what we are going through. They can be used to help with communicating with people. Then in addition to something like this you can also print of a FM fact sheet from the net.

And here is a site for a spouse living with someone who has FM: Living with someone who has Fibromyalgia or chronic Fatigue Syndrome About.com

Originally a guest post I did on Positivity in Pain

Psychological and Emotional Self-Care: with Health Storylines

"This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company."

Self-are is something I have been focusing a great deal on lately. Because I didn't in the past. Just ignored it and tried to push through the pain at the exclusion of my own well-being. And that didn't work. So I know I have to focus on my well-being. I have been doing several things for this.

  1. I have been meditating- this may or may not help with pain but it definitely is helping me with stress. I find it very relaxing. Sort of feel all the tension ease from me. 
  2. Writing a gratitude journal- This is said to help with mood and I have depression so I can use all the mood boosts I can get. I write down three things I am grateful a day, or minimal three times a week. Helps the mind look and reflect on positive aspects of the day rather than focusing on the negatives and the pain.
  3. Writing one accomplishment I made that day... small or large. - I can't always accomplish a lot, but I can do a little. And celebrating those little things makes me happy. Makes me feel productive. And feel better about my day.
  4. Writing one small goal for the next day. - I write down just one small thing I want to do the next day. Gives me something to plan for. Motivate myself to do that one thing. I may do more or maybe not. But I will motivate myself to do that one thing. 
  5. Then keeping track of my mood, pain score and symptoms. This just helps with awareness of where my well-being is at so I know if I need to take it easy and pace myself more through bad pain stretches.
  6. Exercising a small amount on my days off. This is also a mood thing. It is just to get moving and doing something and is said to help with mood. Also pain, but I don't feel that effect as of yet, but that is the theory.
  7. Doing a leisure activity on my day off that I enjoy for the sake of enjoyment Very important to self care is to have balance and actually do things for myself. Not push myself and always do things I feel I Need to do but also things I want to do and enjoy. For overall well-being, joy and happiness this should never be overlooked.
  8. Relaxation breathing whenever I can When I feel stressed or in a lot of pain I will do a few minutes of relaxation breathing to calm my body down.
  9. Seeing my psychologist. I of course see my psychologist to help maintain a healthy emotional well-being and treatment.

Health Storylines is an app that you can use to track your medication, symptoms, appointments, mood and have a journal in there as well. Health storylines app at Apple free download or Google Play  and I have been checking out and has some features on it that help me with my emotional and psychological self-care goals specifically. 

One is the Daily Mood. It tracks your daily mood. And I need to keep aware of where my mood is at so I know what sort of self-care I need to manage that mood. High pain and depressed means a lot different than in pain and content. One I am coping well, the other I am not and needs to be handled a lot differently. You an track them and see how pain levels are affecting moods. How events are affecting moods. How you are coping over time with depression, as I am. You choose the mood, then reflect on the reason for that mood. Today for me it was Frustrating because I had to work in a lot of pain on very little sleep. It made for a long, extremely frustrating day.

The other is My Journal. I am currently just using a notebook for my journal for the gratitude, goal and accomplishments; it is a little messy and off in my computer room so not easily accessible. I find I forget to write in it because at the time something I am grateful occurs to me during the day... well I have to wait until I get home to write about it. Or I simply forget to write about it if I don't go in that room at night. Apps just have more ease of functionality for me. I can use them at lunch at work and write in there something that occurs to me then. I always have my phone on me. It is why I use an app to track pain, which this one has a feature for as well (symptom tracker which I have been utilizing for pain and nausea).

Journaling is something that I do quite a bit of to help with my psychological well being. I find writing to a way to express myself. One I get it on paper I don't ruminate on it as much. And it is cathartic as well. Gets the emotions out of paper in a more productive and healthy manner. The gratitude journal is a fraction of that. It is said to help with mood because you are focusing on three specific positive things that happened to you. But just writing about something you felt good about accomplishing. Working out a problem. Setting a goal. Thinking through some negative thoughts with more realistic thoughts. All these are important to me. I think better on paper.

Knowing your mood, also means you can know when to journal about certain things. If I am depressed I might want to journal about my thoughts. What negative thoughts are occurring to me and what more realistic thought to replace that with. Why I am having that thought. What stressor is bringing it out. And what I should do to help with it.

This journal is set with categories to give you ideas:

  • reflection on my condition today
  • people I am thankful for today -great for a gratitude entry.
  • accomplishment that made me feel good today- this will work for my daily accomplishment
  • insights I have gained about myself today
  • and of course 'write anything!'
It is sorted by days so you can go back and read what you wrote every day. And write under more than on category if you want. Like I write a general entry and then write my accomplishments. I tend to use the reflection on my condition a lot it seems. But really do try to use the accomplishment and people I am thankful for. 

I have noticed by tracking my symptoms on the app as well, that there is a correlation between low mood days, high pain and the high impact it has on my day... which is to be expected, but I can see it plain as day on the tracker. On moderate pain days my mood is more positive and the impact number is always lower. Doesn't even take that much of a lower pain amount. Clearly the days my mood and the higher the impact are the days I need to engage in more self care. Bring out the big guns!

Having tools to help with our self-care can be beneficial. I know I have barriers to my self-care that can be an issue. I just sometimes feel I Need to be productive all the time. And feel guilty when I rest. Definitely feel guilty when I have no motivation and rest too much due to my depression. So I have to balance out motivating myself with things that interest me, such as my hobby time, light chores or exercise and such to help with my depression to making sure I pace myself, rest and stay within my limits to manage my pain condition. I have apps for meditation. Then this app for more integrative things for my self-care like managing my mood, my journaling, my symptoms and a routine builder for my exercise and such. (as well as the other features I also use) to help me know where I am at mentally, see if there is a pattern with pain and my emotions,  respond to that in my journal and keep to a established routine. And I have other apps to track migraine days in particular. All these together can help us give an idea of what self-care we need and well. And knowing when our pain is high or our mood is low, we need that self-care. We matter. Our health matters. Resting, meditation and balancing time to ourselves vs productive time is all necessary parts of healing and pacing. We should never feel guilty about that. 

I am sure if I remind myself of that enough I will definitely get it into my head one of these days. We matter. Our health matters. We need to do self-care. 

6 Reasons I masked my depression for years

It is nearing the end of Mental Health Awareness Month and so I thought I would devote another post about it. This one about what caused me to hide my depression for so long. I had read posts about smiling depression and that was me. I hid behind my smiles, my goofy humor and jokes. No one would ever be able to tell I had suicidal ideation frequently. That I had severe mood issues along with the chronic pain. That I was Not coping well with the pain. 

Originally when I first had a bout of depression in my late teens I used humor when I was getting through it as a positive coping strategy to counter my negative thought patterns. And it worked very well. I cultivated my humor. I encouraged it. And it flourished. At that time the depression came about for a few factors; being away from home for the first time, stress of university and dealing with my, at that time, un-diagnosed fibromyalgia. I had to not only get though the depression but manage the fibromyalgia by passing and moderation without knowing what I even had.

When I was older and the physical pain was far worse and as such I wasn't pacing or moderating or staying in my limits as I desperately held onto working full-time and my career by pushing through the pain. And that led to bouts of severe depression and suicidal ideation. In this case I used my humor, smiles and giggling laugh to mask my suffering. Why would I do that?

So it was a great tool for coping that became a way to mask my depression and chronic pain. 

There is an element of shame: Mental illness has a significant stigma attacked to it and I felt weak of will for not being strong enough to handle things. I didn't want people to know and be judged by them.

Doctor stigma: I had experienced doctor stigma and so had my father. Basically it goes like this, you have a chronic pain condition but you also are depressed. Bam they diagnose you with depression and evaporate the pain diagnosis. It is all the depression and wasn't the pain at all. And your treatment clearly suffers greatly for this.... so I didn't even want to go there.

I felt like I could handle it: I felt like I could get though it on my own if I just stuck it out. Suicidal ideation is just thoughts right? And they would go away. Then come back. And go away. I handled it myself when I was younger, successfully and there was no reason why I couldn't do that again... except the physical pain was far more severe and I wasn't coping with that at all.

There is an element of fear: I didn't want to admit it was depression. Make it real. Like that would make it worse. And something I would have to deal with. I didn't want to admit to suicidal thoughts because I was scared what a doctor would do at that point. I would think things like it is a symptom of migraines in the prodrome and I get migraines all the time... the depression will ebb and flow with the pain. That is was normal to have such thoughts with chronic pain. And convince myself it was fine.

My own mind said to not bother: I'd already established no one was going to do a damn thing about the pain. That my suffering didn't matter to them. What difference did it make? Apparently people do not care how much you suffer as long as you can work. And when you cannot work... they will get you back to work so you can suffering more again. No one was helping me then and I had pretty much given up on that ever happening. I couldn't see it making a bit of difference.

I didn't want my family to know: I didn't want them to know the extent of my suffering. Mentally and emotionally. I didn't want them to feel guilty or like it was their fault. Or powerless to do anything about it. 

Exercise is not evil: it is part of a treatment plan

There is said it. Exercise is not evil. Although you might give me this face…
And in general it may feel like…
It is likely the most common form of advice we get from doctors. I hear it from every neurologist I see. You see there was this study, and there always is a study, that states aerobic exercise of an hour three times a week is equivalent to the migraine preventative medication Topamax on migraines. I received the same advice from the pain clinic. You see, they had read that same study. The difference being they understood I had comorbid fibromyalgia and could not just jump on in and go at it without significant problems. For example, feeling like I was smashed by the Hulk repeatedly. 

So first I will say there are things not to do when exercising. We should never exceed our limits. Ever. Not even if some douchebag neurologist says to you, and I quote, ‘That is not sufficient to do anything. You will have to do more than that to get any effect.’ So you double what you are doing and cause a back injury. So don’t do that. Yes, I did that. I had worked my way up to, slowly, twenty minutes of yoga a day and twenty minutes of walking a day, on alternating days. So I doubled it up. I walked 20 min and did 20 min of yoga every day. How I injured my back I am still not certain although I suspect it has to do with being double jointed since the injury was not a constant persistent pain. No it was some sort of nerve tingling issue and pain after walking for ten minutes but then fine after sitting. I had to not do a thing for six months as a result. So that was hardly productive. The point here is that I did not listen to my body, I listened to someone who knew nothing about fibromyalgia. That is a mistake. They do not know us like we do. We are the ones doing it so we are the ones that know the pain, the limits and the pace.
What should we do?
  • Start infinitely slowly- Test yourself out. Start with going for walks. See how far you can walk before you get tired. Use that as your guideline and continue to do that. 
  • This is not a race- Increase by minutes if you need to. If you can do ten minutes comfortably then go up to 11. If that works, then 12 the next day. If that was pushing it stay there for a bit.
  • Once you have gotten used to walking for a bit choose activities that work for you. For me it is a stationary bike. Although I may try water aerobics soon. Again pace yourself, find where you are at on that exercise and go through the same steps. On my stationary bike I also started at the lowest resistance and slowly got myself able to do 20 minutes, then increased the resistance and again slowly got back up to 20 minutes and then again.
  • You can break exercise up through the day as well. I used to do gentle stretches during certain parts of the day, then later do yoga. 
  • You never want to exceed your pain limit when exercising. You want to get to just the point of pain and back off. The point is to teach your brain you can do these things without feeling pain. So to go to past that pain point would cause a flare up and be counterproductive and likely losing more than a few days of exercise as well. So keep it easy, slow, and consistent just meeting to that point.
  • Be patient- it took me a month of riding a stationary bike at 10 minutes to get past that point from a pure muscle fatigue point. Not even to the pain issue. My timeline I was given to get to an hour of exercise was more than six months of consistent exercise by the pain clinic.
  • Allow yourself pain days- there is no point in exercising on high pain days. And no reason to feel bad about ‘ruining’ the routine. As far as I can tell I have no routine but I still manage three to four times a week. Just so happens it changes a lot to what time of day and which day of the week it is. Nothing wrong with that.
  • Don’t let anyone say you are going to slow, not doing enough, not doing the right sort. Any activity is actually good activity when it comes to chronic pain. It is all beneficial to us. Maybe not what some doctor read in his study, but you know I read a study that said 20 minutes of walking had a great deal of health benefits.
  • Never compare your progress to others- other people have different bodies, different levels of different conditions, different timelines. I know of some people with fibromyalgia that can exercise a lot and I am vastly impressed given my awesome start time of 10 minutes on the stationary bike but it is what it is. I have more than one pain condition and my pain is just at that point. I have to look at my progress day by day and not anyone else. Then when I got to 20 minutes I did a happy dance because it seemed like an insane improvement to me, relatively speaking.
Best choices for chronic pain generally are walking, yoga, stationary bike, water aerobics and Tai Chi. However, depending on health conditions and other factors it is best to ask your doctors what sort of exercise they think you should look at.
Regular exercise can boost the production of those feel-good endorphins and dopamine and reduce chronic pain. They also overall prevent our muscles from weakening and joints from stiffening that can also worsen chronic pain.
So the benefits of exercise according to WRIISC are:
  • decrease pain
  • decrease fatigue
  • decrease joint and muscle pain
  • decrease blood pressure
  • decrease resting heart rate
  • decreased risk of heart disease or stroke
  • improve sleep
  • decrease anxiety and depression
  • increase efficiency of the heart
  • increased control over blood sugar levels
  • increased ability to burn fat
  • decreased loss of muscle fitness
  • increased energy
  • improved cholesterol profile
  • improved feeling of wellbeing
  • improved work and recreational activities.
The first couple ideas here of importance are mood and fatigue. Exercise has been known to help with both these issues even when it is mild to moderate. We need as much mood maintenance as we can get and I’ll get it where I can to be honest. I do find a little exercise gives me some mental clarity as well, so helps with mental fatigue. The next point is that it is helping with overall muscle health and endurance that contribute to our existing pain levels. Improving that causes no harm. Lastly, is the most important of course, the hope that the end goal it could improve our chronic pain itself. That I believe is a longer term goal that I have not seen yet but I have seen my muscle strength and endurance improve, my mental fatigue and mood.
It is a difficult challenge. It is a slow process. It does seem odd we are doing something that causes pain to help with pain, but that is why we have to really pace ourselves. We are trying to retrain the brain by getting to do movement in a non-painful fashion regularly as to lower our pain sensitivity over time. In the beginning though it is very difficult because I had weak muscles and weak endurance and still do, so we must get past that point first. I also believe it is very beneficial to do this with the aid of your doctor to have some sort of plan. I am currently at a pain clinic and they put me on a slow release pain killer to help me exercise. What I have been able to do, which has been infinitely slow progress, has been with that. Without I was at half that. So pain management while doing an exercise program in the beginning is something to consider.
- Originally a guest post of mine on Positivity in Pain

When I say I am good

When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons. 

  1. I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. 
  2. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM flaring like crazy or have severe allodynia. Also I don't really want or need the sympathy. The ideas. The suggestions. I just want to get through the day.
  3. I am straight up lying: I feel horrible, but I want to get through the day. It isn't going to help me or you if I say how horrific I feel so I just lie, lie, lie. No one can do anything. I can't even do anything. It isn't going to help anyone and certainly not me to say how horrible the pain is, so I lie.
  4. I just want to cope easier: Sometimes it is easier to not talk about the pain and just cope with it. It is easier to smile and laugh and put on a facade to help myself cope. Swelling on the pain, at all, ruins this mental game I have going on, that I need, to get through the day.
I don't do this with family. I will tell them when the pain sucks balls. And half the time they can tell when it does. I feel more free to do so. I don't have to over explain. I don't get all that sympathy business, just genuine caring for me personally. I don't get weird advise. I also am at home and don't have to 'function' through the pain. I can just be Me in pain. 

Functioning through the pain takes a totally different mindset. I have to consciously not dwell on the pain. I have to try and keep my humor up, because it helps with my mood and coping. I smile a lot because it literally tricks our brains into releasing happy hormones. I want to keep myself as free of my usual negativity as possible so I can cope with the amount of pain I am in and function through it. I want to deal with the stress of that as best I can with relaxation breathing and resting on my breaks. I try to maintain this atmosphere to trick myself into handling the pain well at work. Generally I convince myself fairly well. 

Lost Days

Today was a lost day. A day where the pain is so high I was unable to function. I could not leave the house. I could not run errands or do chores. I was just unable.

There was a time in my life when lost days made me feel guilty. Guilty at the lack of productivity. That this time was stolen from me and I'd never get it back. All the things I could not accomplish in that time. Missed work days in particular are hash. Today, thankfully, was a day off. Which I appreciate a great deal because lost days of work are still hard to handle for me. When other people depend on me. When it isn't just me I am letting down. But the guilt has subsided over the years nevertheless because I realize on these days, I must take care of myself. I have to manage my pain and engage in self care. Guilt is fundamentally useless. It is not my fault the pain exceeds my capacity to cope with it at times. It is just part of what chronic pain is. I just have to take the down time.

Even now as I write this, I am just engaging in some pain distraction. It is difficult to deal with it right now and just trying to find something to distract my brain. Which on high pain days is actually pretty impossible.

On lost days when the pain is too high to function what do you do? I can tell you this, I can't do much.

So I:

  • Binge on Netflix. Today was Daredevil.
  • Just watch TV, although it is mind numbing.
  • Throw in a movie.
  • Read a fluff book. That is a book with a simplistic plot and so easy to follow it takes very little actual brain power. Like a romance. And if I am not in the mood for that, then a book I have read several times over so I know the plot, and can't miss any details due to pain.
  • Just rest. Nap.
  • Manage pain with meditation. With migraine pain, such as today; ice, migraine balm, medications.
It can be particularly difficult when the pain peaks. With migraine pain I just want silence and darkness. And to try and nap, but I never succeed with the pain so very consuming. This migraine has been going on for days and gaining strength as it does. I was useless today as a result.

There will be days like these. When the pain is so high it is like an itch you cannot scratch in your brain. Ever gnawing on your senses for attention. Stealing all your attention from anything else. Grating on every nerve. You just want to know when it will end, but it just keeps going. But... it will end. The high pain will ease back into tolerable, more normal levels. Or at least not so heightened. It feels endless when trapped within it. And it can last so very long but it will subside.

There was a time when pain like this would last days and I would go to the ER. I am well beyond believing that will do anything. They don't treat it. They don't believe it matters. But pain does matter. Pain should be treated seriously. And if your pain does not subside you should demand treatment. I know in my case, I ought to go to an ER in the city when that happens knowing the local one hasn't the experience to deal with the type of pain I have and simply doesn't care. How many lost days are we to have? Lost to the pain. Hazed out of life. Just waiting, hoping, praying for it to subside because no one cares?

I hope this pain subsides tonight. It would be unbearable to work like this. However, today was a non-triptan day so I have a small hope a triptan will do something tomorrow. It didn't work earlier in the week, so I suspect I am in for the long haul, but I can hope.

Hoarding pain memories and gratitude journals

For this poster I used an image that is a happy memory for me, to remind myself of happy memories. Because pain and negative memories are actually easier for our brain to remember. It is wired that way. It needs to remember anything that might help with survival and anything that might have traumatized us, caused us pain or suffering sticks in there. They have done studies on it. Negative connotations... we remember. Positive images, not so much.

It presents a problem when every day it is;
More pain
Butt-ton of pain
Also pain

What are we thinking about and focusing on? All that past pain. The present pain. All that future pain. The joys. The happiness. Gets subsumed by pain, suffering and negative moods.

This is why we have to maintain our moods. We are exposed to more negativity and stress than most people are. We have to actively do things that will maintain and life our moods. Which then helps us cope with future pain.

Another things we can do is a gratitude journal. So our brains are focusing on all this pain and suffering. We have to reign it in and force it to focus on the good parts of each and every day. What we are grateful for. What we are thankful for.

Like, I was thankful I was able to sleep in today to get some much needed rest.
I was thankful I could get some writing done today on my blog, fiction and do content creation... time to myself to relax and do some activities I enjoy.

How to go about this is any way you want to. There are apps for it. I use Happier.
Here are some tips/

1) You don't have to do it every day. Even three times a week shows benefits.
2) You can be grateful for the small things and the large things. Just really think about what it is you are grateful for and even why.
3) Don't have a minimum. If one comes to you, fine. If five, that is great too. 
4) Don't wait for time to write them down, like at bed. Write them in the moment. This is why I find the app works well for me.
5) Focus more on people than things. I also put in there activities, because with chronic illness these are important and make me feel better.
6) Never put anything negative in there.
7) Give it a chance.

Science has reported that gratitude journals have these benefits:

  • Stronger immune systems;
  • lower blood pressure;
  • Higher levels of positive emotions;
  • More optimism and happiness;
  • More generosity and compassion;
  • Less lonely and isolated.
  • Reduces stress. ("Gratitude research is beginning to suggest that feelings of thankfulness have tremendous positive value in helping people cope with daily problems, especially stress," Emmons says. WebMD)
Maintain a gratitude journal. Emmons' research showed that people who keep gratitude journals on a weekly basis exercise more regularly, report fewer physical symptoms, feel better about their lives as a whole, and maintain greater optimism about the future.WebMD

Fear factor

The only thing to fear is fear itself. Well, maybe. Fear and chronic illness can comingle and create what doctors refer to as 'sick behaviors'. The fear of doing things because of the pain it will potentially, or will, cause.

Here is the thing; there was a time in my life not too long ago when my pain was unmanaged and I was an excessive hermit. Still a moderate hermit. But I was quite reclusive. People would invite me out but the idea that the suffering would get worse, or just having to deal with that pain in a social situation made me cringe. Or worrying about getting a migraine when I went out. So I went out less and less and less. Friends faded away until most were just gone.

In trying to manage my pain I have gone to pain management classes and psychologists and they all say don't let the pain rule your life. Live your life. Fear of engaging in life because of the pain holds us back.

I wonder why though. Because a) the pain will be there regardless b) we are used to functioning in pretty high levels of pain. Why then would it stop us from moderate activities and moderate socialization. As long as we pace ourselves, have a plan and take medications with us. There is nothing to lose and a lot to gain. No loss if we have to leave early. No loss if we have to stop an activity early.

I have two examples.

Socialization: Socializing helps with out mood and decreases that pervasive sense of isolation we have. Even introverts need some social time, just not as much. With chronic pain and chronic illness we might have to select social environments that work for us. A BBQ at someone's house instead of a loud bar. That sort of thing. Binging with friends on Netflix over a concert.

We may turn down due to the fear the pain might get worse, that the pain will crop up due to the increased activity, worry about suddenly appearing and interfering and due to the fear not go out at all. But there will be pain whether you go or not. You have experience with pain and coping with it. You know how to cope and what not to do to make it worse. What activities and environments would trigger more pain or flares. You also travel prepared to treat any flare up of pain. And there is simply nothing wrong with leaving early when the pain peaks to a level that is non-tolerable and non-functional. But many a time you can enjoy yourself with moderate pain. You can have a good time, have some laughs and reduce some stress. Just be you for a moment.

When your pain is a high level of course you wouldn't socialize. But when it is moderate we shouldn't let the fear of pain stop us from living our lives and connecting with those around us. It is healthy and isolating ourselves definitely isn't. I can handle a Lot of alone time as an introvert, but I do need to get out of the house, out of my mind, every so often. As long as the socialization are pretty mellow I can handle it. I go for coffee with my mom. I play cards with my friends. We have a fire at our place with a BBQ.

Exercise: Exercise also works for an example because the fear of the pain makes us inclined to not even engage in trying exercise. Or when we feel the initial pain, we just stop. And it is a hard one for sure because I have never exercised without pain, except for just walks. And that is the clue there. Starting out slowly. With just going for short walks. To find your limit go for a walk and when you feel that edge of tired double back. That is your walk time. Slowly add to it as you go along. Try yoga and stretches. I do a stationary bike because the pain clinic wanted me doing a certain type of exercise. It is painful so I started very slow. 2min in fact was my max. And worked up to 20min over six months. Everyone is different though with their pain and exercise intolerance.

The fear tells us that it will always hurt. That it won't have any benefit. That we simply cannot do it because of the pain. The fact is they don't want us to lift weights for an hour or run a marathon... they want us to move. Mild exercise counts. When you exercise and you hit that alarm of pain, that is when you know you have hit the point to stop. You keep pushing to that alarm zone... and never farther than that... because too much will flare your pain for sure and we explicitly want to avoid that. So we want to just nudge that alarm but never pass it.

We know pain. We know our bodies. If it flares up from what you do. Do less. If you cannot do one thing, try something else. Find something that works for you. And increase by very small increments unless it is comfortable for you to do otherwise.

There are things we cannot do. And we know it. There are things that come with extremely painful consequences. But we don't want to live in a framework of 'can't' because we fear the possibility of pain interfering with what we want to do. It interferes with every single thing we do. We can't let it stop us from living. Living in a different way perhaps. In our pacing, moderated way of course. But still living our lives.

When you get invited out somewhere or to a family social event and you think 'I can't go' ask yourself why you can't go. Is it because you don't want to? Or because you fear how your pain will behave and how you have to deal with it? And instead of thinking Can't try thinking how would I be able to manage my pain and enjoy myself. Take a nap before I go to manage my energy? Take medication early and bring it with me? Mobility assistance tools or comfort accessories?

Depression, boredom and distraction.

Boredom Can Be Dangerous for Mental Illness

Believe me, I’ve been there, and I’m all too familiar with the fact that doing nothing can lead to feeling stir-crazy. While relaxation is essential, it’s also important to feel accomplished. Just don’t overload yourself when you finally get going. It takes a delicate balance to keep from being overwhelmed.

I was just reading something about how we should stuff our day full of things. Even when we lack motivation. That doing, helps get that motivation. Helps retrain our brain to feel pleasure from activities again.

I do know for a fact, at night just scrolling on the computer I am hit with the deepest, darkest of thoughts. My psychologist tells me to confront them on paper to confront how irrational they are. which I do. However, if I am writing all night... there is no space in my brain for these thoughts in the first place. If I am getting involved in the activities I enjoy again; writing, reading, blogging and so forth then I am keeping myself engaged in things instead of ruminating.

It is a process that has worked with me and primarily it is because my depression stems from my pain. When you are doing nothing, the pain is a beast that eats away at you and then you think about it and think about it ... and think some more. Since pain isn't a wonderful thing to think about, nothing good comes from this thinking process. Nothing at all.

However, in a sense it is also harder than you might think to do. Motivation is drained away by depression. What you once enjoyed is just flatlined. If the way to do is by doing then we should dip out toes into an activity with ten minutes. If we are not interested by 10 minutes we can put it aside and try again the next day. But usually ten minutes will stir some interest and get our brains engaged a bit.

You can try new things as well. I read, write, blog. But recently tried adult coloring books. And got back into some video gaming. Extend you passions and try some new activities. Fill your day with things. Work and activities. Keep your brain occupied.

As well as engaging in regular routines. Self-maintenance. House maintenance. Any errands that need to be done.

However, we don't want to be overwhelmed. Make the tasks that are necessary to be simple, paced and spread out through the week to be easily managed in small portions. Make the activities pleasurable ones you enjoy, or did, and engage in them for at least a half-hour. More if it is boosting your mood to get into something. Get your groove on.

Write in a journal this:

Three things I am grateful for:
One thing I accomplished today:
One goal I have for tomorrow:
Mood from 1-10:
Freeflow remarks:

It will keep you focusing on what it good; the grateful and the accomplishment you made as well as focusing on one future goal. The the remarks you can express your mood and things you are doing to improve it. Any exercise you are engaging in. What is helping you,hindering you.

Welcome to the storm

The thing about chronic illness is that it is the hardest damn thing in your life. Things will stress you out in your life. Major events will cause significant pain, grief, hardship and pain. But there will be great joys and happiness to compensate for that. Just like everyone else. What is different is this constant, everlasting stressor that you have to endlessly deal with.

Infinite care: Leading to long term maintenance. Moderation. Never exceeding your limits. Careful planning. Just essentially a life of infinite care. And to be honest less spontaneity. But there is some spontaneity because sometimes you feel moderately good and want to take advantage of that moment, that window of opportunity as it were. Which we cannot do when we plan because generally our illness simply doesn't like plans.

Medications: More medications. Changing medications. Alternative treatments. Other alternative treatments. And all the side effects that come with these. And sometimes you have to wonder if any of it is doing a damn thing. Sometimes I wonder if I went off of everything what I would feel like and then I remember, oh yeah, worse. But no one enjoys the medications. Quite frankly I have troubles with a lot of the alternative treatments because the research is generally not that great, I don't get results and often I get more pain.

Complications in the whole life spectrum: Money out of pocket. Lower income. Compromises. Best laid plans of mice and men often go array when it comes to chronic illness. Best not to think about what ifs and often those compromises are to improve our wellbeing, but doesn't change the fact there is compromises, often financial inability and money spent out of pocket on treatments.

Symptoms: Symptoms that don't even make sense. Random weirdness doctors can't even explain no matter how many tests they do. Until your file is volumes. Comorbid conditions. More comorbid conditions that even seems fair to be honest. Life should really have a limit on that sort of thing. Like maximum 3 health conditions per person. Then the pain. Oh the pain. Not even mentioning constant fatigue and lack of sleep. Weighs us down.

It is a life of coping really. It is our main focus. Welcome to the storm. Time to seek out your umbrellas. Because the storm doesn't end. And I think really acceptance is understanding the fact you have to move with this illness and not against it. Understanding you have to improve, not win. Make strides in a positive direction. Whatever way that means to you.

The stress of it has to be managed because it can really get to us. We have to engage in self care or we really do burn out. For me, if I do not manage this it leads to depression pretty fast. And hopelessness. Like nothing will ever help. Because it feels Massive. And what I have to understand is some self care goes a long way in helping me cope with the stress of dealing with the everyday pain of it all. Everything I listed above has an impact one way or another.

It is vital we rest when we need to rest. In particular if we know we are going to engage in an activity we need to prepare for that by having rest before and after, even by having a nap to prepare our reserves. It is important to understand guilt shouldn't enter the picture because it is fundamental we manage our energy levels and pace ourselves. I cannot stress enough how important pacing is to how we manage our illness and pain. When we push to far, even with general chores or too much work, we tip the scales and increase our pain too far into a flare up of symptoms and pain. Causing us to have to recover. And then we repeat. If we pace ourselves we can eliminate some of this peaking of pain activity. Not to say it doesn't happen for other reasons of course. And not to say pacing isn't damn hard, but we have to get into the routine of it. And when we rest we have to really rest. Engage in some meditation if it helps. Or relaxation breathing. Go someplace quiet and out of the way to just get that space needed. So hard to do and so beneficial. I was told to do this at work and still have not managed it but know it would help manage my pain there. As it does at home.

There are times when this constant, persistent nature of this illness exhausts me to my bones. I find engaging in distracting activities, that I can handle, to be the most comfort and mood boosting things to do. When my depression was at its worst, those were not even satisfactory. But I realize they are quite necessary for my wellbeing. It was almost like I needed my psychologist to give me permission to do them without guilt though. He was the one that said they were important for mood, for distractions for our self-worth. And for some reason I felt if I wasn't doing something productive I ought to feel guilty about that. Because my illness makes me feel so guilty all the time. Why this came to be I don't know. We are as functional as we can be. We know we have to pace and know the consequences if we don't. Even know we are in fact more productive if we Do. Yet we feel we need to push through the pain and do more and more, and anything for ourselves is just... not right. Because we didn't do enough. Not like we Could if we were well, right? Like we don't have a right to doing things for ourselves. And our own self-care and health. Like we don't matter.

If we are to make peace with our illness then we do have to matter. Then we have to understand, this is the chronic illness lifestyle and self-care is a part of that. Everything we do to cope is a part of that. Pacing is a part of that. Every little bit counts and is important to our wellbeing and that matters. So acceptance is knowing you matter and taking care of yourself. And I know I should take that advice myself.

The pain price

Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause

What Anderson Cooper's Show About Prescription Addiction Got Wrong About Chronic Pain

In response to Anderson Cooper's show I sent in this response:

Here is what I sent to CNN:
People with relentless chronic pain take painkillers as a last resort. Not a first, second... fifth. A last resort. It does not get us high. It slightly dims the pain so we can be somewhat functional in our lives. With unmanaged pain I has suicidal ideation and intent. Because that is what pain does when it is relentless and unmanaged. It exceeds your capacity to cope with it and every day you push beyond your limits. Until you wish desperately for the pain to end. You don`t have a life, you have a horrific existence. No sane person would want to live like that. When finally you get referred to a pain clinic to get a treatment plan; including medications, a psychologist to help with coping strategies, an exercise plan and so forth it is like finally someone cares about your quality of life. All this coverage in the media is making it out like addiction is this massive issue when only around 2% get addicted to opiates.(amend that to 10%. I forgot the specific stat there and had to look it up. 10% of the population as a whole is susceptible to any addiction) Less people are die from opiates than die from NSAIDs, which doctors are now comfortable to prescribe despite the side effects. They are taking away medications people need to manage their pain and this will increase the suicide risk, which is already high in pain patients. I can hardly see why that fact is so okay. Let them die, right? We are just the ones with an invisible disability. We don't matter. The hype of addiction... that matters. How you skew the story, that matters. How actual pain patients are getting affected by this? No one seems to care. It is shameful. People have the right to have their pain treated. They have the right to quality of life. I speak for my American friends. Who are treated like criminals at their pain clinics in order to get a refill. I am Canadian and I hope none of this madness trickles over the border. Living with that raw desperation and suicidal ideation and intent... is not a place I want to go again. Try doing a story on how they are being affected by these changes. How they are treated in ERs and at pain clinics. What chronic pain is really about. We all get ill, someday all of you will too. Maybe pain will be your disease. Wouldn't you want to be treated with some dignity? Wouldn't you want some quality of life?
This is because addiction has always been a problem for 10% of the population. Always. And if you read the first article I posted most who become addicted to painkillers are not becoming so by getting them prescribed to them in the first place. Addiction has and will be a massive issue that is complex and must be addressed by society. I recommend watching Russell Brand: From Addiction to Recovery.

But the other side of the story that is completely ignored is the massive amount of people being treated with chronic pain, which is very complex.

The suicide rate among people with chronic pain is known to be roughly twice that for people without chronic pain.Since there are 41,149 suicides every year in the 
U.S., according to the National Center for Health Statistics,  it’s possible that roughly half of these suicides are driven by pain. Not proven fact, but plausible hypothesis. This would suggest that perhaps up to 20,000 Americans a year with chronic pain kill themselves, which would be more than the government’s tally of 16,235 deaths from prescription opioids every year.  commonhealth

These suicide stats are worrisome because we have suicidal thoughts when our pain is not managed. Suicidal Intent when we lose hope that it will ever be managed. The pain just consumes our capacity to reason. Destroys hope. We lose so much to it, there is little left to live for. If it is not managed. What will happen when pain is not treated properly? When pain meds are reduced? Taken away? This number will go up. And THIS is okay?

This is why this whole issue has made people with chronic pain more invisible. Our care. Our quality of life. Our very lives themselves. Don't matter as much as the 10% of people who have the risk factor for addiction..  So yes, for temporary injuries, manage your pain prescriptions. Don't be all willy nilly with them. Makes perfect sense. But don't punish the pain patient. Don't make up stories that they are all addicts and drug seekers when we know for a fact they are not. When we also know for a fact untreated pain is a suicide risk.

When I hear stories of how pain patients are being treated in the United States it infuriates me. How they are being shamed for an illness they cannot control. Belittled by ER doctors who think they are drug seekers, and even turned away. Having to take urine tests to prove they are taking medications as prescribed and pill counts. How embarrassing and what bull. How doctors are telling them they can't have their medications any more, cold turkey, or have to be on less. And how they feel defeated, hopeless and scared about their future with that looming pain. How it sickens me that doctors are pressed to ignore the care of their patients because they don't want to be seen as handing out too many pain meds. The profound stigma enhanced by the media creating a public view that pain medications are worse than alcohol abuse. Leading to more judgement and stigma. What have you done? And who will suffer for it? Who will lose their lives for it?

I know this is a rant but you just see it over and over again. Prince dies... and must have been addiction because he had painkillers in his system. No one mentions he had chronic pain and maybe it was simply to manage that. Or that sometimes for a pain patient that is our choice for suicide as well. Before anyone knows anything they judged him as an addict. Because that is the cool thing for the media to do these days. Never mind all us invisible, silent sufferers just trying to live some sort of life with our pain. An endless battle we struggle so hard to earn a day. I can't think of the future because it looms with pain and that thought depresses me... or terrifies me. I just have to think, 'How will I get through This day of pain.' With my small accomplishments and little victories. At other times losing a day to intense pain. All those lost days adding up to years worth. Our lives are still worth something. This struggle should be worth something. We deserve some basic rights and quality of life. I rant because I know what it feels like to just want to end the pain. To think it. Plan how to end it. Then take that step into action.

I rant because I feel they are ignoring the massive problem right in front of their faces. The significantly more people suffering with chronic pain, who need quality chronic pain management. Who has our voice? Who is going to stand for us?

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...