The disability question

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How long do you persist with working through pain? It is a question I ask myself all the time. There are a lot of factors to consider and I grasp them all. There is income stability. There is the factor of work helps with isolation, the sense of productivity and is emotionally and mentally beneficial. We feel good when we work. But then there is the chronic illness. The pain.

Continue reading “The disability question”

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EmilyD

There is something special about chronic migraines. In its unbearable suffering. I admit I have not exactly been responsive to treatment. Recently at the pain clinic my doctor put me on 200mg of slow release tramadol for pain. And nada. I actually wondered if it was a strong pain killer but someone else at the same pain clinic… for sever TMJ was getting a 1/4 the dosage and was doing great on it. Either I respond poorly to it, or it just doesn’t do it for migraine pain. It actually moderately helps with fibromyalgia related pain, which I rather like. Not a lot, just sort of takes the edge off the sharper pain. But it is like it ignores the migraine pain altogether. However, there is no other pain killer he would put me on due to rebound effects. He did consider a NSAID but due to my rather unfortunate response to previous NSAIDs and now side effects that wasn’t an option. He is completely right to do so. My doc once put me on codeine for a rescue med and I rebounded like crazy on that. More than twice a week and the headache From it was nuts. There is no winning with rescue medications. The only reason they tried the tramadol at all with me is because I have been completely non-responsive to medication. I do however respond to triptans, just have bad side effects so cannot take them very often at all.

So there actually is no option. Aside from trying botox for a second go around, when it failed the first time. Nevertheless, I am going to try it, because rather nothing else to do. And when you have nothing else to do, you repeat and hope for the best.

The pain is mind-boggling. So difficult to even attempt to function through. To even want to contemplate functioning through. But doctors all encourage work. Only part-time, but work. And it is just so freaking exhausting to try to manage the pain.

If I didn’t have a medication to manage the depression associated with all this pain, I would in fact be suicidal from it, as experience has told me. As it is, my mood still dips quite a bit. Because, well, it isn’t exactly fun and games is it? But it is constant. A constant battle of pain every damn day. This is because the pain levels are quite high. For example FM pain varies from a baseline pain of around a 4-5 with more intense pain in specific areas of around a 6… flare ups get to 7 or 8. Migraine pain ranges from a 7-9 all the time. So all the time I am in 7-9 pain. Best case 7. Good day.

And a 9 is extremely high intensity pain. Yet I am told to work through it. To push myself because the pain will be there regardless and I need to work. That is effing high pain. I have troubles driving with that level. Troubles just moving. Thinking is very narrow and tightly focused… and not all there. It is like the pain gives you blinders. It crowds your brain so you have to narrow your focus to the specific task in front of you. Inch by inch, get though the day. Plod though things slowly and methodically. Praying for no errors. And just counting down the minutes until you can get home to suffer in peace. Time becomes infinitely slow. Drawn out. Endless.

And I wonder how the hell am I even managing this? Not well really. Not well enough at work, still, even part-time. The pain specialist said the pain and medications make things difficult cognitively. Not to mention migraine pain specifically does. How the hell do we manage all this pain? Affecting our capacity to think to function to move to sense our environment with accuracy… Because we must, obviously. But I don’t know why we don’t just up and quit one day. Enough! That is it! I’m not moving from my dark house until I have to… screw you society! You can’t make me suffer more! Course they can. And they do. And we continue on.

Where does all that damn strength and courage even come from? Some days I cannot get out of bed because of the pain and the creeping depression that tells me I just don’t want to move in all that pain. Those days are days the pain wins. How I manage to get out of bed on other days… I have no idea.

We must be badass mothertuckers. I don’t feel like I am, but to do what I do in pain I must be. All I ever feel? Is the guilt of not doing when in pain. And I am sick of the bad pain days. Because there are too many of them. If I could just decrease the intensity of these migraines I would be so relieved. As it is, I feel like I am running in a dream… where my legs don’t work and are stuck in thick air and I get nowhere at all. Nowhere fast. Can’t escape.

I wonder if I am the only one that wonders… how will I get through tomorrow with this pain? And how long can I endure this pain? Years? decades? So maybe I am a badass Mothetucker but I am a tired one. Far too tired of this pain game. Worn to the bone. How I have survived this long is something that surprises me. I don’t know how I did it. Moment by moment of course. Still decades of pain wears a person down. Yet we carry on. Tired. Badass with our freaking shear determination and guts. I will win this day! And we do.

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Chronic, episodic migraines and chronic pain

the pain constantly haunts my existence

There is on profound difference between episodic migraines and chronic migraines and that is chronic migraines are Chronic Pain.

I once had an employer who had episodic migraines and because of this she believed that she could relate to me with my chronic migraines. I hoped this was true myself because it was so very difficult to get people to understand this was Not a headache. She got that part. Indeed she understood that completely. But because of that she couldn’t comprehend how I could function in the pain, and therefore how could I in fact be in pain. How could I function one day and not another? Why couldn’t they find treatment that would work? Why didn’t I do enough to treat myself? Why was it so complicated in my case?

Fact is episodic migraineurs do not need to know all the ins and outs of migraine research and treatment if they get them rarely. She had no idea 4% of migrainuers get chronic migraines. She thought I was some weird anomaly. She thought I had to be doing something wrong and that treatment was simple. When treatment for chronic migraines is a rather complex thing. She ended up not exactly empathetic to my cause, but I hardly blame her. I had untreated daily migraines and was missing a lot of work. No one likes an undependable employee.

The point isn’t about episodic migraineurs and what they do or do not understand about chronic migraineurs…because we are all migraineurs. And we all understand the fundamental migraine experience.

The point is chronic migraines are Chronic Pain and that is a whole new set of rules to play the game under. No more take a triptan and sleep the migraine off. No, it is trying to live your life With migraines. Because they take up more than half your days… or all of them for people like me. We can’t treat them all with abortives, which means we have untreated migraines sometimes. Like any other chronic pain condition we have to learn to endure the pain. We often have to learn to even function through levels of it. If we are lucky enough we can dampen it a little, which is a good thing. If we are very lucky a penetrative helps with frequency and intensity.

Nevertheless we are not hiding in the dark… we walk among you with our hats and sunglasses and migraine balms and medication filled bags. Trying to live our lives. And people inevitably say, “I don’t know how you do it.” And there is on simple response to that. “We have no bloody choice.” This is our life. We must find a way to deal with the suffering, live in the pain gaps and, every so gently, live our lives.

I could say to you the pain constantly haunts my existence. And it does. I could say there were times I simply could not bear it. And that is true. But it is my life to live and I cannot waste it being afraid of the pain.

With chronic migraines it is your constant companion. It affects every aspect of your life. There will be impact. And impact. And compromises. And more compromises. The pain has a radius… it will affect your loved ones, your family, spouse, children and friends. Yet it is an invisible disability. People will call it a ‘headache’. They won’t believe you should miss work for it. They will believe you are just trying to get out of work. They will believe it isn’t nearly as painful as it is. They certainly won’t believe you can be Disabled from Migraines. Nor that you can function with them, even if you have to, they will believe you must be lying that you have them. Because like I said, how can you function one day and not another? The stigma is profound with migraines.

With episodic migraines though if you get them rarely enough you’ll get sympathy. People will say go home and rest. You must be in pain… look at you. And you will take that triptan and sleep it off and be fine. It won’t interfere with your life, work, loved ones, ambitions, goals, existence and social life. And you would Never imagine functioning with it. If your boss told you to keep working without migraine treatment with a full-blown migraine? You would complain to Someone about that business.

It isn’t that the pain is better… the pain is the same. It is that it is about chronic pain. And chronic pain is a different game.

And the risk is… anyone with episodic migraines could go chronic. Or high episodic, which has the exact same impact as chronic. There are certain risk factors like obesity, starting out with higher frequency, allodynia… and others. But the tipping point can just happen. One day you are managing well with a condition you Think is simple and one day you are trying to function through daily pain.

 

society.

Work not working #blogboost

Have too much ambition_ On the fast track and don't know how to get off_Try migraines.

Working with chronic migraines has always been a battle for me. One that I have never really actually seemed to succeed at. Certainly one I have tried to succeed at. Certainly one doctors have tried to get me to succeed at. But not one I actually have.

This has always, always infuriated me because I have ambition. I have this sense of wanted to progress in a career. I have this desire to want to accomplish things. I also want to hold my own financially. I am a very intelligent person and I want to engage myself. Not to mention, apparently, some of my self worth is tied up in what I do. I rather established that fact when I went on a long term leave and felt sort of at a loss. That can be normal and it is difficult to find ways to fill that void. Nevertheless in my case my doctors assured me it was in my best interests, all around, to return to work part time. They said it was impossible to work full time, to wish was firmly established by me, but that it would benefit me to work part time. And of course there are a great deal of benefits to working. I enjoy getting out of the house and being in the world as it were. I like the forced routine of it that makes me get up at a certain time, and go to bed at a certain time. Otherwise my sleep cycle due to excessive insomnia is extremely erratic. To a point, and I must make that clear, to a Point, it is actually a very good pain distraction. Not to mention the all mighty financial stability, which I value immensely.

And yet, even part time.

I fail to Get to work: This is an issue. My pain levels vary like everyone’s. And there are days of extreme pain where nothing works. Or days of extreme symptoms. On these days I have missed partial days… so loaded up with medications and then made it in for a partial day, or missed a whole day. I mean, some of those days with vertigo and persistent migraine auras it wasn’t safe to drive. Some of those days I did anyway. But some I just could not. Some days because of the depression and pain, I had no willpower to do so.

I wonder if I just have to push through the pain again. But when I did That I ended up with deep, horrible bouts of depression. Due to forcing myself to exceed my pain limits. Yet this is in fact the only viable solution to this problem I have. And this is freaking part-time. I should not be having such an issue. The idea was: One day on, one day off. Makes it easier to tolerate the idea of working in pain. But the pain disagrees.

Functionality: So I get to work. Bravo for me. Well I my performance isn’t where it should be. Because when I get there I have a migraine. I have a migraine every damn day. I am just trying to not make mistakes to be honest. And damn to you get in trouble for those. So I just try to focus, focus, focus. But there is more to it than that. And I am just trying to get through the damn say. So, yeah, my sales suck balls. This job is easier than my last roll. It was meant to be. To ease my stress and so forth. And it does. But thinking through pain when that brain of yours is pretty much using 90% to tolerate the pain and only 10% to function… it is damn difficult. Thinking through mud.

I’m actually not sure what to do about this. Some days with a migraine my brain capacity seems so very low. My verbal capacity definitely suffers substantially. Sometimes I am very confused. Sometimes I am so very dizzy. It does take a lot of effort to sustain actually focusing on just general tasks. I don’t think people realize how difficult it is to function during one of these. Neurologically speaking. Not just pain wise. It reminds me of my spouse and his beloved truck that has a broken spark plug… truck is running really rough. Well I have have five broken spark plugs all the time. I barely chug along neurologically. Yes, this is difficult because I remember what my brain was like. And I have not had clarity in over a decade. God, I miss migraine free days so much. I miss the processing speed. The clarity of thought. The mental recall. Being able to use my words.

 

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Are migraines progressive?

Listening to the Migraine World Summit talk called Progressive Migraine Risk factors with Richard Lipton. To register for the online talks click HERE.

Is migraine a progressive disease? Short answer in a subgroup it is.

With migraines there is a line in the sand, but it isn’t firm as we can wander back and forth. This line is Episodic migraines less than 15 a month. Chronic migraines greater than 15 a month.

Treatment for migraines involves lifestyle, acute treatments (triptans) and preventative treatments. With chronic migraines the goal is to improve overall functioning. Preventative treatments are considered at their Most effective at a 50% migraine frequency reduction.

Lipton has done a large study on who and why people go chronic as well as treatment of migraines. 25% percent of people with episodic migraines get minimal effective treatment for disabling migraines. This includes going to the doctor first, second getting the diagnosis correct and getting the proper treatment. It is substantially worse for chronic migraines where the criteria is a proper diagnosis, any guideline treatment and any acute treatment. It found only 5% are getting minimally effective treatment. Lipton stated there is a lot of miscommunication about frequency when it comes to chronic migraineurs… attacks vs days. So I may have 9 attacks over the span of 15 days. Or have headaches I do not report because they are not ‘bad’ enough.

Liption stated currently there are risk factors for progression from episodic to chronic and that the hope is to prevent progression. 2% of migraineurs who are episodic go on to develop chronic migraines. Risk factors include such things as;

  • having a high frequency to begin with,
  • having Allodynia,
  • Migraine overuse headaches,
  • Using acute treatments that do not work well,
  • Comorbid conditions; depression, anxiety, IBS, pain disorders, RLS

They know the risk factors but do not know if prevention helps with progression. Although it is a good idea to go on preventives, address lifestyle issues like problems with sleep, address comorbids and have a stress management plan.

The general progression with age is that migraines pick up around, especially in women hitting puberty. They peak in the 40s. Worse during menopause for woman. And then often remits in middle age to later life. However chronic migraines there is a greater risk that migraines will persist into later life. Then the little fact that menopause is no guarantee that migraines will decrease after it is all said and done, but it it Can have that result.

So it is progressive in the subset of people. That 2%ers that progress into chronic migraines. Why is not clear. Although it was stated it tend to run in families and there may be genetic links.