Tuesday, July 28, 2015

Exceptionally long #pain week

A week of acute migraines I have been unable to treat. Along with some unpleasant FM symptoms. And I am tired. Making this week exceptionally long. It is times like this I really regret working. I am drained to my core.

I have not been able to sleep well. Obviously. Not with this level of pain. The way it always goes.

There is no actual solution to this problem and that makes my mood rather low today. Sort of just want to just sleep for a few days to recover. And I am in fact counting the days to my next day off, but that seems an eternity away at this point.

I remind myself there will be bad says. Unfortunately they tend to really cluster together into a brutal bad week. That is just the way it works.

I hope everyone is having a low to moderate pain day. It is difficult to get through the bad days I know. We have to distract ourselves from the pain, but the level of pain makes it difficult to distract from. It is hard to maintain our mood. Hard to sleep. We just have to take it easy. Get through it moment by moment. Know that the high intensity times do not last forever. It will get a little bit better. It is not wrong to relax. It is not wrong to take your time. To relax. I know that working makes thing exceptionally more difficult than we would often like in pain and there really are no easy answers in this case, except to find a solution with your employer to adapt to the workplace, do flextime, work from home or work less hours. And I would say we all should consider such options, but the pain clinic has told me to work part time and I have yet to mention it to my work place because I am stubborn and I feel that they will not likely go for it. I feel that it will bring unnecessary stigma into my work enviroment and I loath that sort of stress. Stigma at work brings a whole level of stress that I really do not welcome on top of coping with the existing pain. So I am just considering my options. I am also dealing with some medication changes and seeing how that works out.

the aura show

The one thing about persistent migraine auras is that they are there migraine or not. It used to be they were this awesome warning system of Impending Doom. As in I would get this atypical migraine aura pretty much an hour before the actual horrific headache portion of the show began. It was perfect for taking my migraine abortive. Talk about knowing exactly when to take your medication when you start going sparkly blind in one eye.

Not so much any more. I have much more diversity now as well. So much more visual auras to go around. And very few of them warn me of Impending Doom. Well, not visual ones anyway. Tingling in the hands or face is pretty much a dead give away though.

But it does vary. There is the halos around light. Where the lighter it is the harder it is to see, because there is fuzzy halo around all light sources. So if someone is standing beside a window... can't bloody well see them. Starbursts often come with halo days... they are when you see something like headlights but the light expands outward like a star. A common aura of mine I get very frequently replaced my regular aura, but is a persistent migraine aura now, it is this broad arch of multi-colored pixels of light in both eyes over about half my vision... fluctuating and pulsing for a good five to eight hours. It expands from a small portion of my vision to a larger portion... sometimes a significant portion. Other times there are dark spots, blind spots, blotches of white, raindrops of color. Another common one that comes on in bright light exposure is a vibrant vortex of light with a blind spot in the center. It reminds me of a flower, with pedals of black, iridescent blue and pink expanding open and closed. It tends to get larger as time passes and is always in the core of my vision.

It would be like if people could see a rainbow... the colors are similarly vibrant and translucent... but fluctuating and pulsing. Overlapping reality. Distorting reality. Another aura I can get is where lines, like corners, patterns, lines all warp and contort... so that makes it difficult to look at things. But you can see how many of these things are difficult to describe. I can say sort of like some fireworks. Sort of like a twisted rainbow. I often wish I could take a picture or video of them just to share the experience. Often wish I could show them to my neurologist as well so they could understand how disruptive and distorting persistent migraine auras actually are... given they light show does not shut down, just changes from day to day.

It is sort of problematic and enchanting. In some sense I am entranced by this light show. In a way it is often Too distracting. It takes away from reality in ways you really don't want it to at times when you need your attention. But sometimes I will just watch the light show because it is that fascinating what my brain is producing... this illusion. Very problematic when you need to see fine detail. Drive. Pay attention. Want to see. Things of that nature. And also very unpredictable with persistent migraine auras... you really have no clue if the phenomena will last all day or a few hours. My vision, in some fashion, is compromised in some way every day at some time.... just depends on Degree.

Sunday, July 26, 2015

The Truth

It is not that they cannot handle the truth so much as they do not want the whole truth. They want the story version we tell to make people feel comfortable. A little struggle in there. How we cope. Maybe some treatment in there. Viola the chronic illness life. Not. Quite.

The truth. The whole truth. Has a lot we leave out. Like some days the pain gets the best of us and we wish we could just lay down and never get up. Or our anger a frustrations we face with our limitations. Or the endless guilt we feel being unable to do what we feel we should do. Even discussing the stigma we face is often something we do not discuss all the time. There are many facets of our story, the darker aspects, the more complicated day to day aspects, the grind of the day to day pain... that we tend not to reveal because it makes people uncomfortable.

They are uncomfortable because if they love us, there is nothing they can do to stop the pain and suffering and that makes they feel horrible. We don't want them to feel worse, so we waterdown what we say. It is uncomfortable to friends because if you told them the raw, blunt truth, they would not know what to say back. They would be at a loss of words because they have nothing that compares or relates to that. It is easier to keep it simple, direct and easier for them to understand. So they feel they understand what you go though and feel they can support you.

And hell. for me, lets face it I am not about to be telling people the straight up raw, brutal truth. It is hard for me to admit to the toll pain and illness has on me out loud. Like it makes it so much more real by saying it. Admitting to it just seems weak. It makes me emotional and upset when I think of the impact and try and explain it. And I tend to like to keep the buried in me where I can mask it and not think about it.

Friday, July 24, 2015

Working with Chronic Illness

I had a conversation with a customer a few day ago about chronic illness. He was recently diagnosed with MS and still getting used to it. He was using a Alberta service to get back into the work force fitting his new needs. Because you have to work, to have something to do... long way to retirement and we are still fit enough, capable enough to do so.

I though about that and thought... damn straight. Yes, we have a chronic illness... or more than one as the case may be. And yes it is difficult to cope with and we have to know our limits and moderate our activities. And yes this does factor into what jobs we can actually attain in the first place, and how much work we can actually do. BUT, we have a lot to offer. We are capable in many ways. We get a lot of benefits from working. We have the desire, the motivation, the need often even... so there is no reason we should not get assistance to be placed in a job that would work best for us.

He helped me see it is a better light that I currently was. Which was... tormenting myself to get through the day. Working for the sake of working because apparently I am functional enough to work just enough. Although just enough in my case is part time, so I should not even be working full time. I think that is why my outlook is rather negative because I am exceeding my limits every day and it is beginning to have an impact. One impact seems to be I keep getting sick. Horrible flu. Then this virus that attacked my the casing around the heard. It is because I am tired, stressed and my immune system is suffering.

But this customer reminded me that we are people with health problems, but we are Not those health problems. We have a right to have a life like everyone else does. It is harder to manage in some ways, but we learn to adapt and cope. Work is one of those aspects that we want to attain and have to find something that works around our disability, or with it I should say. I liked the way he looked at it. I believe he is well on his way to coping well.

The main problem is finding that perfect Balance. A job you can sustain that does not make your health worse, and thus you perform well and do not miss work. That is difficult to find. Especially with chronic pain, that seems to just be so present all the time. Not saying it isn't possible, especially since there are some good employers out there. Just finding them is difficult.

I do know if we do not find the right balance we often exceed our coping, by pushing through the pain to work. We cut out other things in order to manage to get to work and then crash at home. Like cut out socializing and leisure activities. Using all your energy to get through work. And this never works for long. You burn out. Trust me. Happened to me often and went on short term leaves over and over and over again as a result. This is precisely what we should Not do. We need the right balance.

Wednesday, July 22, 2015

Study on #Fibromyalgia and Alcohol

Two pints of beer a day could help to reduce disability in people with chronic pain, according to a new report yesterday.
In a study of 2,239 individuals with chronic widespread pain, the key feature of conditions such as fibromyalgia, those who regularly consumed alcohol had lower levels of disability than those who never or rarely drank.
Those who drank 21 to 35 units of alcohol per week were 67 per cent less likely than non-drinkers to experience disability.
“We cannot say that alcohol consumption causes less disability among people with chronic widespread pain.
“But the observed link warrants further investigation,” said Dr Gary Macfarlane, co-author of the Arthritis Care & Research study, who is professor of epidemiology at the University of Aberdeen. Mirror
Oddly enough this is not news to me, because this study has actually been done before. I read about it a few years back. And I will say the same thing now as I did then... maybe, maybe not but it does not help someone like me because with chronic migraines I am not going to be drinking every day or even moderately. Rarely is when I drink. Although I will say on the occasion I can tolerate alcohol brain wise if I have a few, it does help with pain... and sleep. And both of those are good things.

But not like I recommend this as a solution given all the medication we generally are on. I mean think of our poor livers As Is.

Monday, July 20, 2015

Pain mechanism

I always enjoy a good pain mechanism article. Here are some block quotes in bold from this one. Give it a read.

Over one-third of the world's population suffers from persistent or recurrent pain, costing the American public alone approximately $100 billion each year in health care, compensation, and litigation (1). Chronic pain is associated with conditions such as back injury, migraine headaches, arthritis, herpes zoster, diabetic neuropathy, temporomandibular joint syndrome, and cancer. Many of the currently available pain therapies are either inadequate or cause uncomfortable to deleterious side effects. Chronic pain results not just from the physical insult but also from a combination of physical, emotional, psychological, and social abnormalities. Because many pains persist after an insult is healed, the ongoing pain rather than the injury underlies the patient's disability. Untreated pain may become self-perpetuating because pain has immunosuppressive effects that leave patients susceptible to subsequent diseases. It is now clear that if we can effectively treat the pain despite the underlying cause, it will be possible for patients to regain normal functioning. The key to more successful pain treatment is to understand the mechanisms that generate and maintain chronic pain. Mechanisms of pain

Neuronal Plasticity

Plasticity is a term used to refer to changes that occur in the established nervous system. Changes in neuronal structure; connections between neurons; and alterations in the quantity and properties of neurotransmitters, receptors, and ion channels can ultimately result in increased functional activity of neurons in the pain pathway. Conversely, plasticity can decrease the body's own pain inhibitory systems, resulting ultimately in increased pain. Injury, inflammation, and disease can all cause neuronal plasticity and increased pain by means of increased excitatory or decreased inhibitory mechanisms. Plasticity can result in short-term changes that last minutes to hours, or long-term changes which may be permanent. Mechanisms of pain

Sunday, July 19, 2015

Heart Attack... nope, virus

I was minding my own business at work. Almost time for lunch and we were having a pot luck that day... so a lot of good food to be had. Then suddenly Chest Pain. Sort of started with some short jabs in the left then got stronger. My chest got tight. My breathing constricted. The pain radiated to the center and through my back.

Now, let's be honest here, I am not new to chest pains because I have had adverse reactions to triptans that causes erratic heart rates, breathing issues and yes, at times, chest pains either mild, moderate or even on occasion pretty severe intensity.  And I also have fibromyalgia, so with that comes with Costochondritis which is a form of chest pain due to inflamation in the joints of the sternum. And it can be severely painful as it was with me at initial onset when I was working as a baker in university as a summer job... as I continued to do a job that aggravated it it got more and more severe. Took about six months to recover and a lot of anti-inflamatories. I have had it since then, usually when doing some sort of activity with my arms, but never that severely. 

So I am familiar with chest pains, to the point that I generally do nothing when i get them. Sort of 'wait and see' approach. I usually lie down and hold off, hoping they will go away. But this time I had not taken my triptan and it was not the sort of pain associated with Costochondritis. With my recent quitting smoking I thought I might be having an adverse reaction to the patch... conceivable. I found a help line called Health Link which is 811 here, to ask if that was in fact possible and took off the patch just in case. And the nurse who answered listened to my symptoms and told me to call 911. Well that sort of disturbed me. I know, generally, the chest pains I feel are never a good thing to ignore, but usually... well, I do. And still around. So it was worrisome she had that immediate response.

So my boss drove me to the ER. Where I was from 1PM to 8:30PM. And by the way it took me an hour to get in. If it Had been a heart attack... I'd be dead. Just saying. But they were thorough, I'll give them that. The ER in town never has been when I had adverse reactions to triptans, when the pain was quite severe. At this ER they did an EKG, chest X ray and two blood tests. To rule out heart attack and blood clot and chest issues. And what they determined is that it is viral inflammation, due to the location and pressure testing we are looking at Pericarditis, which is a viral infection of the tissue around the heart. Which explains not only the nature of the pain, but some of the funky heart rhythms I had going on initially, which were fine later, but keep going funky every so often. Also had some severe, intense abrupt vertigo at the ER.

However, I am still suspicious about the timing. Pericarditis can be caused by a few things it seems. Including just idiopathic. And man it is painful. I didn't sleep last night. It was excessively painful in the morning because of the fact it is way more painful lying down. I was not able to go into work. Because I am not able to treat it. The only position the body feels decent is leaning forward, which is hardly ideal. Right now in fact, it feels like someone is bloody stabbing me. Hurts to breath. Reminds me a lot of when I smashed my ribs when I took a tumble in the bathroom once. I still wonder if it is due to the smoking patch though. I am thinking of going cold turkey as a result. Which will be difficult, but maybe I will recover faster from this inflammation issue.

I hate how random health issues like this seem to afflict those of us with chronic illnesses. If it is not one thing... it is another.

Thursday, July 16, 2015

Day one of my quitting smoking

So i am quitting smoking for some very good reasons. 1) cost. It just is not affordable in these economic times with my spouse working less and the price going up as it has. Just not worth it. I can think of so many better things to waste my money on. And several more important things. 2) Asthma. I have adult onset asthma, so smoking not good. Obviously. And I have tried quitting since this kicked up and it never worked. This year however, we also have a Lot of forest fires in the area Also aggravating my asthma and I realize all this is just so not good on the lungs. Just plain stupid. 3) Migraines with Aura. Now migraines with aura increase your stroke and heart attack risk. And my neuro said I really ought to quit smoking because so does smoking... really stacking the odds against myself here. And not getting any younger. Every migraine I have I wonder could this be the one that blows up my brain? And I wonder because I had an 'incident' neuros debate (as in three neuros cannot make up their minds on it) that was potentially nerve damage from a stroke. And potentially is freaky enough. I mean, I do have the nerve damage. And it did happen during a status migraine. So freaky enough to be wary.

So three very good reasons to say enough of this crap. Just Enough.

Yes, it is hard to quit because when you are in a high amount of pain and can do nothing about it, smoking is like this stress reliever that helps you just relax about the pain you are in. Especially at work. Helps calm me down about being in immense pain when I can do nothing about it.

So to replace that negative coping strategy is going to be hard. Not fun to be in immense pain and unable to treat it. Not fun at all. What I have done today is done relaxation breathing through the cravings... so I might use the same thing for when in a lot of pain.

Either way first day of not smoking sucked balls. I had the craving deep in my stomach. Sort of feels like a ball of anxiety, that says you need something... not food... something, to satisfy you. Like an itch you cannot scratch. And it is uncomfortable. But you can't do anything about it but Want and not Have. All day. Even though I am on the patch. I assume it is because the patch has less nicotine in it than you would normally smoke, so the first days are rough as all hell. I didn't remember the first day being this antsy in the pantsy but it was.

Glad I made it through. But this was a day off, where I could distract myself all day with numerous things. Tomorrow is an extra long day at work where I pull overtime.... and that is going to be stressful and Long. It is going to be my next major challenge in this adventure.

Not even one- is my motto. Because even one will destroy my willpower. The need hits you full force when you have just one. So not even one. Never again.