'Everyone will get used to it but me' This is a fact. Pain is always new to us. It is a constant experience for us. A Live Experience. A Being-In-Pain experience.
There is only a certain degree of this experience we can divulge. For one, language does fail us in this. There is a depth to this experience that cannot simply be expressed. Levels to it. Factors to it. It would be less a statement and more an entire in-depth conversation. Secondly, we do not always express our pained experience. We know it is not something that people want to hear all the time. Nor do we want to share it all the time. And sometimes it makes us feel like we are complaining. It does come out when the pain is particularly There.
Others though, yes, it loses its originality. You cannot expect others to feel its 'freshness' like we do. So for them it is not this constant experience. If you do not express your pain all the time and they do not see any pain behaviors from you, which most chronic …
I made this image for the Migraine Misfits group I admin and no truer words have ever been said.
"We are too able to be disabled or too disabled to matter."
It is hard to even find this line with society to be honest. I can never find it, but I feel it. I have gone back and forth on it. As can happen with invisible disabilities. Most of the time I find we are left struggling on the 'too able to be disabled'. Left to flounder in a society to fast paced for us, desperate for some sort of relief or just for the pain to stop for One moment... but just too able to be disabled, right? Because we present this 'functional' image. This 'can't see it' so it must not be that bad.
Functional. Or just functional... enough. And so society does not give a damn that you suffer for it. It is a problem. I like to think most of us are offered the right programs to cope with our chronic illnesses but I was diagnosed with my first at 16 and just got into a chronic pa…
So here is my new Freelance writing site The Hermit. I had to make a new one because the old one was not working for me so for a bit I was just using my writing blog. But when I was on long term leave I could not make any income so mostly I was doing low pay or for free work. Time to up my game as it were.
Not to say that I will not occasionally add other work to my portfolio that is for free if it adds something to it. I was thinking of doing just that. Shows experience and adds a little something for people to look at on the site.
So hopefully this will add a little something for people to review when I am looking for paying work. I have a few things in print on my portfolio so that is something at least. And my regular online gig as well.
This is my plan since being tossed by the insurance company. To pick up more freelance writing. Article writing and blogging. That sort of thing. Then something for a baseline income to cover the rest. It is the best idea I have at the current time…
Okay, embracing life is a complicated thing when compromised by a boatload of pain. However, it is very true that time will pass and with it our lives. We have to figure out ways to increase our quality of life such that we can will these glorious moments from the pain. Or just win moments. I like moments.
I can't myself recall too many glorious moments I have won. Mostly I think of vacations that I went on despite the pain. As we all know chronic illness and chronic pain make vacations difficult. It is not just the planning involved in just going it is the very fact you are taking your illness With you. So you have to pace yourself. You cannot do all the things you Want to, just a little bit each day with a lot of rest in there. And there will be pain. Nevertheless you get time with family, you get a change of scenery and you get joy. You get glorious moments.
I vividly recall the trip I took to Scotland with my family when I was 18 for example. That was a glorious collection of …
There is One thing I have done on the recommendation of my psychologist that the insurance company I deal with has latched onto to suggest I have 'significantly improved' which suggests they are incompetent douchbags. However, that one thing is still a good thing, just a minor thing. It is leaving the house to socialize one every two to three weeks to play cards with friends. This 'socializing' aspect that improves mental and emotional wellbeing.
Isolation all day for weeks on end only leaving the house for doctor appointments, neuro appointments, phsyio and the pain clinic is not good at all. You get no real interaction with other people. Day in and day out you are all alone in the house all day. And less and less do you even want to leave the house.
leaving the house means going out into a bright, loud enviroment that will just amp up the pain dramatically. And it is not fun. It can make a person miserable pretty fast. And driving constantly gives me vertigo which a…
According to a presentation at the American College
of Rheumatology Annual Meeting people with fibromyalgia had a median rating for cognitive function that is significantly lower than in patients with rheumatoid arthritis and reported more symptoms of impaired concentration.
According to the researchers, the largest difference between the two groups was in distraction by background noise, poor reading comprehension, difficulty following directions, trouble following conversations and difficulty concentrating.
FM patients also reported significantly more difficulty than the RA group in areas of inability to retain patterns when adding, subtracting, multiplying or dividing; inability to recall known words; frustration when speaking difficulty expressing thoughts verbally and other problems with cognition. (Helio)
Katz R, et al. Paper #1112. Presented at: American College of Rheumatology Annual Meeting. Nov. 14-19, 2014; Boston.
Living with chronic illness means dealing with a lot of uncertainty. We have to deal with the changes in our health that impact all aspects of our lives and this can be quite difficult to deal with. Especially when we have goals and dreams to attain in the process.
I have been on long term disability from work for the last two years. I cannot go back to my previous employment, that is pretty much a sure thing. I can work from home or have some sort of part time work. And that is something I have to now consider. As in now. As in right this minute. As my insurance company has cut the strings and decided I have improved enough that I can attain some sort of work somewhere.
Which gives me a lot of anxiety, as it would any sane person. Financial stability and disability are not friends. We are constantly trying to find ways to hold onto our budgets because it is difficult to be disabled and financially stable. That I determined when I went on leave and my income dropped. Now I have to re…
I realized immediately when I sat down at this pain clinic class that some of these people were like me, some were not as bad.... but one was definitely worse. She would love to have my bad days. I would not want her good days.
It is good to know, once in a while, that what your pain is an ordeal, that it is difficult to cope with and manage... there are people out there struggling with a pain condition worse than yours. Many of them. I like to think they will win that struggle and get some balance of life in there. And that if they can... I can too.
I just know her battle is a difficult one. I makes me believe maybe mine is not quite as insurmountable.
And she had a fighting spirit to her. I like her chances. I wish I had that fighting spirit. But I don't. I have a practical spirit. Get it done spirit. Just do it. But there is no fire in my gut.
But there are indeed in this world people who would love to have my bad days. It makes me feel like even though I know those bad days…
In the poster I created I confronted this stigma that chronically ill people are just lazy. We do not do enough to help in our own treatment. We don't exercise.
Fact is, many of us to many things to help with our chronic illness. We have a treatment plan of some sort. It constantly evolves and includes more than one thing usually. It can at times in our lives include a lot of things. Far from lazy.
But the fact is despite all that we are not lazy. There are other factors to consider here.
Fatigue: we experience a fatigue so far beyond tired normal people cannot even comprehend the word. It makes accomplishing anything an ordeal.
Pacing: We have to pace. We Cannot do a lot in a short amount of time. We have to do a little, take a break, maybe do a little more and then leave the rest for another day. Like my instructor in the pain clinic class said every else in the world is busy being the hare but we are the turtle... we have to get used to be turtles. We won't win races, but…
Window to the Soul Beneath this wall A pit of suffering Hidden from all, Blinding and writhing A pit of suffering Behind smiling eyes Blinding and writhing. What a pretty disguise Behind smiling eyes Hidden from all What a pretty disguise Beneath this wall
I like to think I know who I am, but when you think of all the fatigue, brain fog, neurological symptoms and pain that comes with migraines... exactly who would I be without them?
It is hard to imagine with daily migraines because you lose that comparison. Those non-migraine days. I seem to recall the last one I had, that is a migraine free day, involves a lot of energy and clarity of thought. So I imagine without migraines I would just be able to think more effectively... instead of through this mud with pain taking up half my attention all the time.
And let us not forget that being in pain all the time impacts how we perceive reality and our emotional states. My mood stability would be different. How I perceived time would be different. How I thought about reality would be different.
That is why when people say, I am not my illness... well, I know I am in part influenced by my illness. It and I have been linked for so long it has impacted who I am. Without it, them actually, I woul…
I have been going into the city three times a week now for a few weeks. Mondays for a pain class; teaching techniques to cope with pain. Tuesday and Friday for physio the insurance company sent me to. It is a bit of a load.
And I am not driving. My mom has been driving me to All of these. All of them! Due to the chronic migraines and vertigo. Since I have been put on the calcium channel blocker the vertigo has been reduced but it is very unpredictable with motion triggers like extended driving, elevators, escalators... pretty much anything like that.
If I were driving it would be worse. But as it is, all this into the city and back for weeks is triggering the vertigo in an extended way. Three days now I have had episodic bouts of vertigo. All day long, but mild and pulsing and then suddenly more moderate. Today before we left I noticed it sitting down. Then in the city I could feel it standing up. Then my balance was shot.
However, with my medication it is in the mild to moderate ran…
You come to this inevitable realization coping with chronic pain that you will never fix certain aspects of it. Like the pain of course. But also things you just thought maybe you would be able to overcome. Like perhaps having that career deal. Instead you have to compromise on something that will be a lot less satisfactory in order to just maintain existence. Not my life, I want to say. But it is, I respond. It is.
Yet fixating on all the voids we have is never the way to go. This quote does reflect how I think right now because I am frustrated with the process that doesn't seem to ever have any actual progress. That does not mean my life does not have positives that I value immensely. That I have chosen. Embraced. That somewhat fill the voids left by the pain.
I can only hope as I progress further I can fill more of these voids and have more satisfaction, despite the p…
However, the entity “medication overuse headache”
(MOH), as deﬁned in the article, is misleading and inaccurate. Current
diagnostic criteria for MOH only require abortive medication use on 10
or 15 days/month (depending upon the drug).2 What is not needed is any
evidence that the abortive actually causes an increase in headache.
Medication overuse (MO) often occurs among people with frequent
headaches. However, MO does notnecessarily lead to
increased headache.Diagnosing MOH is not an easy task. MOH diagnosis
must require an individu-alized assessment of the patient’s medication
and headache history.The epidemiologic studies of MOH are not valid,as
they do not differentiate MO from MOH.
A number of years ago, all
abortives, including non-steroidal anti-inﬂammatories (NSAIDs), were
implicated in MOH. We now realize that certain drugs (NSAIDs and
triptans) are less likely to cause MOH than others. Opioids and
My psychologist said I should begin to think of at home work I could possibly do as a new career. This is because he said I am no longer really competitive in the work world. If I were to go look for a job it would be difficult to find one due to my chronic illness, even if I were to severely limit what I told a perspective employer. Plus there is limited part time employment I could conceivably due to make sufficient income
What he said reminded of what my previous employer had said to me once. The woman had said a lot of not pleasant things in my time there but she did say one thing that was brutal and also true at the same time. She said due to the economy if someone was to be laid off... it would be you. Like I was the weakest link due to my short term leaves and sick days. And she was right. I was hardly dependable as an employee. It wasn't exactly a nice thing to say mind you. Since it was something I already knew. Companies will try to get rid of you in any legitimate way …
There is a reason I love this quote and it has nothing to do with its original context, although I do love Nietzsche.
It is that there are times when you look into a deep, painful subject, it is like it turns back on you. Like you cannot think about it without getting immersed within it.
You cannot conceptually think about pain, without thinking about Your pain. And being in pain, thinking about it, makes it worse.
This is what I think about chronic pain. The abyss. You stare into it because you need to cope with it, grasp it, understand it in order to live with it. Yet it seems to curl back into you... and you get sucked into this spiral of 'what does this pain mean?' or 'what if this pain never ends?'. The abyss will gaze back into you.
It is inevitable because we live at the very edge of the abyss. We stare into it on a daily basis. And at times, we get consumed by the intensity of that all-consuming pain. All never-ending aspect of it all.
It turns out one of my physio exercises is giving me chest wall pain. It is a pain called Costochondritis. When I first developed it in my early twenties I was working as a baker with a lot of heavy lifting and repetitive arm movements.It gave me a great deal of pain that grew and grew and extended to longer parts of the day. Until I finally got a doctor to diagnose it, was unable to work and was put on a boatload of anti-inflamatories.
Costochondritis is inflamation of the cartilage that connects your ribs to your breast bone. It can be mild or extremely painful. It can be stabbing, aching or burning. People often mistake it for a cardiac event. In fact, had a taken a triptan that first day I did that exercise... I would have assumed it was my heart. Pain is the same. Thing about Costochondritis is that when you aggravate it over and over, it lasts longer and longer. It was just happening at night, well after I did the exercise. Hard to see the link, but I am familiar with the condit…
It is difficult sometimes to get the post across that migraines are a neurological disease and not a headache.
Oh, you have a headache again?
First, try every damn day.
And it is a migraine.
Here is the thing. If you have migraines you know what it is like. That insane throbbing pain. The sound and light sensitivity. The nausea and at times vomiting. Vomiting was a serious issue of mine when I was younger with migraines. I had to get the migraines triptan abortive medication that melts in your mouth (such as Maxalt) because the pill form had No time to act I would get so violently ill. I am 'lucky' I have more nausea than vomiting issues these days. With the added bonus of vertigo, which does not help with the nausea. I have migraine with aura, so I do get the aura phase... from the visual light show to the tingles running up my face and hands. Now a migraine is one-sided pain technically, but it moves for me to become all head pain. You eyes hurt. Your temples hurt. Your jaw…
A Whisper Away Just a whisper away Pain’s hidden tears Smiles with edges that fray Silence weighs the fears Pain’s hidden tears rules all the sorrows Smiles with edges that fray stealing all tomorrows Rules all the sorrows Smiles with edges that fray Stealing all tomorrows Just a whisper away
I was trying out a new poetry format and came up with two short poems. This is one of them. The format has some repetition in its form, which I sort of think works for some.
Gone Where have I gone? Shadows today stretch away reflections of the past said and done And here I stay Shadows today stretch away Pain lingers in the mind And here I stay Feeling lost and blind Pain lingers in the mind Reflections of the past said and done Feeling lost and blind Where have I gone?