Bubble world

Fraction.You see but a fraction.Chronic Pain.So much is unseen.But felt.An entire existencehidden from sight that affects one's entire existence.Unknown.Perhaps,unknowable..png

Chronic pain is a world. It profoundly affects our perception of self and reality. It affects us mentally, physically and emotionally.  It can break us and make us, and quite frankly, do both. It is suffering and perseverance. It is coping and not coping at all. In this world we have to understand it is a bubble world. It is different than the reality of someone without pain.

And yet, all of that turmoil, change, and adaptation is under the skin. It is an unseen world. Unknown. And perhaps even unknowable. It never ceases to amaze me when I think of the profound impact and raising awareness, how much depth there is to the experience.

I have was writing a fiction piece and the character said chronic pain was like suffocating and choking, like never getting enough air.  Choking on the pain and existence. I have myself said it is a life of inches. People move a mile a minute it seems. While we crawl and suffer for inches.

But there is a lot more to the experience of suffering than that. There is a sense of constant ‘overcoming’. A sense of perseverance. A sense of enduring. Of constant survival, if not thriving, then surviving. Not the victim, the warrior.

Then there is the constant maintenance that comes with chronic illness. All the day to day things we do to ‘maintain’ the pain and the disease itself. Not to mention our actual goals to achieve a better quality of life. And setbacks. And small victories.

There is the hefty emotional toll that has to be looked after as well. Constance self-care isn’t just physical it is mental and emotional as well. Not to mention comorbid mental illness that is so very common with chronic pain… because it is Pain and it is a trial to live with.

It is no wonder it is commonly referred to as a war that never ends. With battles, small victories and retreats but never an actual victory or end. No wonder it comes with fatigue… as we are battle worn soldiers.

And out of all that comes a lot of thoughts and perceptions about our disease and the pain. The guilt. The feeling on is a burden. Not a productive member of society. Not pullings one’s weight. A failure. The stigma often is we should blame ourselves for being ill… and then we blame ourselves for being ill. There is a lot of external stigmas but then again we internalize a lot of that stigma onto ourselves, sadly.

And yet, we can explain all of this and still never make it KNOWABLE to someone. Living in a pained body is an experience you have to have to understand. How the pain is a constant presence. How exhausting that is. How it consumes so much that it is hard to think though. How deep inside you may just feel overwhelming tired of the battle. That you may have had suicidal ideation… thoughts about the pain ending. That some days you don’t even know how you made it this far or how you can go on. But you do. But the depth of the pain, its weight on us, the deeper, darker thoughts, the feeling of trying to get things done with pain and fatigue weighing you down… all this is so unknowable.

And it is always a little sad for me when people I thought had grasped my suffering say something that tells me they really don’t. And maybe simply can’t. Maybe you can’t cross the line until pain is chronic and daily. When it is severe and it presses against you constantly, steatling your capacity, functionality and productivity.

Wednesday Wonderings: blurred lines

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Migraines are the kind of disease people like to discount. It is just a headache, they think. It is just a once a year deal, they think. So when you are chronic and a lot different for you and certainly a migraine is a lot more than a headache, you are still discounted. You can be intractable and disabled but seen as not sick enough to actually be on disability. I’ve seen it. We often hover in that blurred line of disabled and not sick enough, by others, by insurance companies, by doctors… people that matter for our lives. People who don’t listen. People we have no control over. And they randomly choose one and that affects the fate of that migraineur’s Life.

And we walk the blurred line of functional and non-functional. One moment barely function and the very next non-functional. People wonder how we could do something one day and not the next. But the pain of a migraine varies within the migraine. Or can be half treated. And migraines vary themselves. One could be a 7, and you can be barely functional at that. One can be a 9 and you cannot function at all at that. We, though, have to live in the shifting of pain and functionality all the time.

Just as we have to live in the shift of tolerable vs intolerable pain all the time. We have limits to our pain tolerance. We cannot function when we exceed those limits. A 9 migraine is an intolerable pain.  To expect anything from a person in that level of pain is idiotic. Yet, people do. I have had people expect things from me at that level. Forced me to. And I didn’t get far.

But that blurred line between who we are with pain and who we are without it can really haunt us. With it we can be irritable, moody, frustrated, exhausted, confusion, have brainfog, memory issues, concentration problems…. we are fuzzy, zoned out, tired, moody versions of ourselves.  When do we get to see that person we are without the pain? Just a glimpse here and there? And that is the saddest thing of all. I barely know that person. Barely see that person. I am more the person in pain than I am ever without migraine pain.

Oska Pulse

So this is a bit of a carry over from my other blog the Brainless Blogger. I was doing a review for the Oska Pulse hoping to see a benefit with fibromyalgia during three months, which I certainly did… but I have also seen improvements with migraines. So I think I should mention it on my migraine blog as well.

What is the Oska Pulse? Well, it is an external stimulation device designed to relieve pain, muscle stiffness and inflammation through pulsed electromagnetic field technology (PEMF). It promotes recovery for all types of pain and is drug-free.

 

Where to purchase? Price?

You can purchase Oska Pulse at OskaWellness.com. The cost is $399. With my Brainless Blogger discount enter BRAIN in the coupon code and get 5% off.

Return policy?

There is a 90-day money-back guarantee.

Benefits:

  • non-drug treatment
  • an external device, so no surgery to implant it.
  • portable and I can bring it with me anywhere anytime
  • It has a band so I can attach it do my shoulder or back or knees as the need may be. Although for migraines I just lay down with it by my head.
  • Chargeable
  • Runs on 30-minute cycles and turns off by itself.

 

Some Research

“Treatment of migraine with pulsing electromagnetic fields” involved 42 subjects had treatment 1 hour a day for 2 weeks. 73% reported decreased headaches (45% a good decreased and 15% and excellent decrease). 10 went on for an additional 2 weeks of treatment. All showing a decrease in headaches (50% good, 38% excellent).

My Results

So it took a bit to see any results in the migraine area. I use it consistently around 7-9 times a day to start for three months and then now down to 5 times a day. On the head area and body. I have had migraines for 20 years so they are pretty ingrained in me, I assume people who are episodic or with a little less time under their belt would see results sooner than I did.

What I am beginning to see is a decrease in intensity. Some decrease in frequency; I am daily but I have, indeed, had migraine free days. But mostly it is the intensity that is what I have noticed. First, it was a delay in the migraine start time… like later in the day. Then just lower intensity. Some days so low I would be hard pressed to call it a migraine without the other obvious migraine symptoms. Instead of my usual 7-9 daily range, it is 4-9, with the hormonal ones being the highest in there as they, as per usual, don’t respond to much of anything.

Secondly, and I can only assume this is because it is helping with intensity, it is also helping with one of my most problematic symptoms of late: relentless persistent nausea. For two years now that nausea has plagued me. I have eaten zofran like candy with gravol. And peppermint tea and ginger. And I lost 25 pounds because I could barely eat and struggled to keep anything down. 25 pounds of weight loss is a lot for someone with hypothyroidism. My doc wasn’t sure it Was the migraines and tested me like nuts for this random weight loss. Anyway, the Oska Pulse knocked it down about 70%. I take about 1 zofran a day or one 12 hour gravol to managed the nausea. It is such a profound relief to be able to manage that now. And eat. And actually have an appetite.

Anyway, it is helping me at work since work always increases pain. Such is life. So instead of hitting really high points and needing a lot of medication to just get through and crashing when I get home, I am more of a mid-range and getting through with little to no medication.

I am on botox, but only the first round and as a previous non-responder I do not respond to the first round and maybe not at all. At my last appointment when it hadn’t done anything yet my doc wasn’t very optimistic. But I am going for another round anyway. So the results I have been getting are unlikely to be that. Also I ran out last month as I am late to get in for the next round, so actually shouldn’t be responding at all at this point. Nevertheless, I believe in all avenues of treatment so I am going to do Both. Other things I currently do for treatment are magnesium oil, B vitamins, ice, Japanese mint oil topically and exercise. Medication: topamax and relpax.

 

 

Mental Health Awareness month: Depression and migraines

There is no such thing as pain without emotion. Pain comes with an emotional reaction. Often with chronic pain depression and anxiety. (2)

With migraines, we are three times more likely to develop depression.

This is notthe lifestyleI ordered

And we have a higher risk of suicide as well, even factoring in the depression.

This week is mental health awareness week and I think depression is an important topic with chronic migraines specifically. With chronic pain, we tend to have this belief that the pain would make anyone have troubles coping. That anyone would be down. Frustrated. Have dark moods. And depression, if we acknowledge to ourselves it is even that. We say everyone must feel like that sometimes… because of the pain. Indeed, pain itself is a suicide risk factor all on its own and it is a risk factor with migraines aside from depression… because suicide is what happens when we exceed our coping strategies and have no hope in resolving that problem. And that situation is something chronic migraineurs find themselves in often. But we also blame the depression on the pain, feeling it is normal to be like that with pain. In fact, depression associated with a medical condition like chronic pain… is a type of depression. But it is depression. And it can be dangerous if it is not treated along with pain management. If the pain is out of control the depression will respond to that. So both need to be effectively managed at the same time. It is my belief the depression treatment will not be very effective if it is therapy based if the pain isn’t being managed at all. When it is depression associated with chronic pain that is. You have to show there is some Hope in pain management. I am all for therapy though. Very valuable for this type of depression because a therapist that

In fact, depression associated with a medical condition like chronic pain… is a type of depression. But it is depression. And it can be dangerous if it is not treated along with pain management. If the pain is out of control the depression will respond to that. So both need to be effectively managed at the same time. It is my belief the depression treatment will not be very effective if it is therapy based if the pain isn’t being managed at all. When it is depression associated with chronic pain that is. You have to show there is some Hope in pain management. I am all for therapy though. Very valuable for this type of depression because a therapist that specializes in chronic pain can help with the depression and with coping with the pain, and how they work together and tangle together. And oh, how they tangle together.

Sometimes depression isn’t depression related to a condition, sometimes it is Major Depressive Disorder and ignoring it can be dangerous. It can lead to suicidal thoughts and actions even without the risk factors of the pain and migraines. This is the type of depression I was diagnosed with. Actually did exactly what I said, ignored it for years because I thought it was the pain. Just the pain causing it and I could deal with it. But it wears on a person. Gets the best of them. And going to the pain clinic, seeing the pain psychologist and ultimately being put on Abilify (I have severe adverse reactions to antidepressants) was the best thing that ever happened to me. Trying to cope with pain while fighting your brain is a difficult battle every day. Makes it twice as hard to cope. It is a heavy burden to bear. Having it lifted enough to deal with it effectively makes me able to use all the strategies I need to cope with the pain. Depression doesn’t just make you fight yourself mentally and emotionally. It saps your energy and motivation. You have strategies and habits you want to maintain… but then just can’t find the will to do them. Or even why. Why bother? What ever changes? What is even the point? All those thoughts happen. But every bit counts in a routine with pain, as we all know. Ice helps. Magnesium helps. Vitamins help. Meditation helps. Medication helps. You add all the things that help and you get something that helps you manage your pain.

Management of our comorbid mental health conditions is vital. There is no shame in it. There shouldn’t be anyway. There is the stigma. There is even doctor stigma. There is so much stigma it is insulting to me and to society as a whole. I have been pretty insulted by the stigma myself. But that is on them, which is why we need awareness. But don’t you feel shame just because of that stigma. 1 in 5 people will have mental health problems in their life. That is a lot of shame if people expect us to feel that. And we have no reason to. Our neurtransmitters are a little out of sorts is all.

The big 40 birthday

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I celebrated my 40th birthday on the 28th. That is now 20 years of migraines to date. But it went extremely well. Migraines have responded well to botox and this Oska Pulse device I am using. So low intensity and some migraine free days in there. I am also making sure to use magnesium and take B vitamins. And keeping myself hydrated.

So I celebrated on Thursday by going out with a few friends to Karaoke. I don’t sing but I support my friends. No migraine showed up after indulging in 6 beers. Which exceeded my usual limit of 3. So double. I only socially drink and rarely at that, so I have a low tolerance for alcohol so I was mighty tipsy.  But I quite enjoyed myself.

I went book shopping with my mom (the ultimate gift for me). Clothes shopping with my spouse. Due to my recent weight loss, I was looking for some jeans that actually fit me so I can give away some old jeans to charity. Instead of wearing clothes that are hanging off of me. Then my mom, my step-father, and my spouse went out to dinner. I had a low-intensity migraine but it never became much of anything, just a lot of light sensitivity made me wear my migraine specs.

It was a really good few days, to be honest. I really enjoyed myself.

Flipping into a new decade always makes you ponder things. I don’t mentally feel forty so I did skip the mid-life crisis (mid-life if I live to 80 that is). But it does mark 20 years of migraines and 20 years of fibromyalgia. That does make me think of treatment progression. Treatment when I was younger compared to now. Frustrations with coping when I had no effective treatment at all and the hopelessness of that to some modest treatment, routines at home and some acceptance in myself. It dramatically affects how you cope and live your life. Not to mention mood. When your pain isn’t managed at all, mood tends to falter. When you have no hope of any treatment, mood also falters.  So that needs to be attended to as much as the pain. It complicates things a great deal. Takes time to sort out. How we perceive pain and our lives with it changes over time as well. And our coping strategies are constantly adapting and growing. As is our maintenance routines. I have a pretty solid routine now, but in the beginning… had no concept of what would help, what wouldn’t help and what to do. And absolutely, fundamentally no guidance in the area either. Although, I, unlike some people, do have a wonderful supportive mother who has recommended things for me to try when I was younger and guided me a great deal in this journey. And I needed that. Someone who had my back.

Another thing I pondered was the price of chronic pain. Something people often do not think about when they see someone in chronic pain. They, obviously, would assume it sucks but the impact it has on someone’s life is pretty extreme. While you are trying to find treatment, messing around with treatment, trying new treatments… things suffer. Socialization, financial stability, friendships, relationships. The impact can explode all over the life you had. And trying to stabilize that can take years.

It isn’t an easy life by any means. But it is the life we have, isn’t it? And we have to live it the best that we can.

Fear factor

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Here is the thing about fear and pain. We learn it. For me, it came from working a decade in a horrible workplace. The environment was horrible because the manager was. I don’t know if it was the stress or all the horrible things she said, but my migraines got worse and worse until they couldn’t humanly get worse. And this made me profoundly depressed. She, got worse, as a result and made me feel worthless. I literally could not picture a worse place to be in mentally for chronic pain. And it has taken about three years to get back some stability in mood and chronic pain management. Not that I blame that manager entirely since my doctors were not helping much either. And I had exceeded my ability to cope with pain at that point. So I was just pushing through and pushing through. But self-worth? Gone. I blame her mostly for creating the worst conditions possible for someone with chronic pain to work under. Like she was following a guide of ‘How to treat peope with chronic illnesses in the workforce’ and doing the exact opposite. Ultimatums, demotions, snide veiled threats and some really vicious conversations. I felt such shame for being ill. Such guilt. Such hatred of self.

So I have issues with self-worth now. This idea that the pain will always win and I will fail at everything I try. That I am worthless because of the chronic pain to every one.

That is where fear comes in for me. The low self-worth tells me I will fail. So I fear to try because failing to function and thrive makes me feel so much worse. Failing to try though? Seems even worse.

It affects everything from work to social lives… this fear. We anticipate pain so we do not go out. It will be worse as soon as we leave the house… so we don’t. A new job would be too hard to handle, so we don’t take it. We fail to poke and prod out limits for fear of exceeding them.

Not the way to live with chronic pain. The way to live with chronic pain is Always Be Prepared when doing anything… but do do things. I go out to a friend’s house to play cards and I am prepared when I do. I take precautions before I go out. Rest, ice, hydration and magnesium oil. And when I am there I have a painkiller and a triptan. If it gets beyond my capacity to cope we go home early. No harm no foul. And I enjoy myself. Migraines will come whether we want them to or not. Often will in my case. Often have them in my case. But I still have a life to live with them, within moderation and taking all the steps to keep the migraines tolerable as best that I can.

Yet that fear of failure due to this fear I cannot cope with the pain lingers due to past experiences with it. Doesn’t matter the situation is entirely different. That I have an awesome manager. That I am not depressed, like that anymore. That I do see the pain clinic and the migraine intensity is lower than it was. That I do a lot of things to manage the pain. Entirely different situation and yet due to my low self-worth I no longer feel I have the capacity to accomplish anything. I have the desire. The ambition.

I shouldn’t fear the future based on the past. But pain, is something to fear. It is hard not to fear the place I was in and ending up there again. It was a terrible time. I should think of the present and moving forward with new skills and improvements. And managing the pain while at work in the various ways I manage it at home.

Screw fear, eh?