Thursday, January 29, 2015

#Being in #pain vs seeing pain


'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 pain people do Not express then it is not uncommon for them to say 'You look good today, you must be doing better!'. It is not uncommon for them to think looking good must mean feeling good. Because they do not have that constant persistent experience suggesting otherwise. Nor do we constantly tell them otherwise.

Hey I feel like crap

Hey I feel like crap

Hey I feel like crap

Hey I feel like crap

Hey I Still feel like crap

They would get pretty damn tired of That quick. And yet, without it, apparently we are cured every once in a while.

"You getting those migraines again, eh?" *Sympathetic sound* "They are back?"

What the... where did they GO???? Yeah I am getting those migraines STILL. Still. Always. Chronically.

And we can forgive these errors. We have to. Because we have the lived experience. The constant reminder of the pain present within us. For them.... it loses its originality. They don't pay attention to it. They even tire of it. Or fail to see it. It fades from their minds.

Tuesday, January 27, 2015

Invisible Awareness Magazine

Invisible Awareness Volume 1 

 I have begun this monthly online magazine Invisible Awareness that can be ordered for 3.99 an issue. This first issue is all about fibromyalgia.

You can order it for 20% off until Feb 5, 2015 with the code ABRX9WR5V32Q


Submissions:

I am looking for people to submit to the magazine on chronic illness topics. I am looking for:

Articles
Personal stories and essays
Artwork
Poetry

Since this is a start up I currently cannot pay per piece, but let's hope that in the future I will be able to offer something per submission.

Please send your submission to: nikki3albert@gmail.com with Invisible Awareness Submission in the header.

Sunday, January 25, 2015

"We are too #able to be #disabled or too disabled to #matter."



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 pain clinic at 37. So I know people slip through massive cracks in the system. I know a lot of us just try things on our own. Acupuncture? Sure, I'll give it a go. Chiropractor? Tried that. And the list goes on and on and on. With utterly no guidance at all. In my case no real medication either on the FM side until six years back. So it is a broken system.

I had a doctor that when I was on a short term leave from work, which happened too often (yeah, not so functional after all) his sole purpose was to get me back to work. Because he must have believed himself I was too able to be disabled.

Then something happens and you cross the line and are 'too disabled to matter'. You are of no use to society anymore and they have no use for you. You could starve for all they care, and you might given the income they provide on disability. That, frankly, is a disgrace. Here, in Canada, and in the States. People should not have to live like that just because they are disabled. But you also find you are ignored, discounted, considered worthless and your opinion not taken into account. Half the time they think you are lazy, a drug seeker and faker any way.

Then someone decides, no, you are more functional than that. So now you are back to being too able to be disabled.

People never look at the stigma inherent in the system. How little companies accommodate disabled employees unless Made to, and then resent that fact. Or don't do it at all. And if you do not function as you are told in the workplace they come down hard with the ultimatums. Get Better damn you!

The stigma of those on disability is just right in the system. Keep them just above the poverty line? What is that about? These are people that had no choice about there illness. Had great jobs and careers and you knock them down and say sorry try living in poverty.... because we don't Value you. You don't Matter.

Saturday, January 24, 2015

My new #freelancer website

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 based on my skillset. Research and writing skills. Plus because my pure enjoyment of it. That would be an added bonus really. Ideally I would find something in the FM and migraine community, but that would be the icing on the cake for me. My perfect scenario.

#glorious #moments we can #win from the #Pain


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 moments I will always remember. My great-great-grandmother was turning 100.

We returned to Scotland several years ago and it was also a glorious collection of moments I got to spend with my spouse. My cousin was getting married.

Then there are the trips that are short into the mountains. Like the one my spouse and I took into the mountains to a cabin (I cannot handle a tent, too painful). I find it very peaceful in the mountains. And though we took in the scenery, mostly by driving, and short little walks... I really enjoyed myself. I had some wicked migraines but that is Life. I treated them aggressively as I could and did what I could to enjoy the peace the enviroment brought with it.

And I would have missed those had I been afraid to travel with the pain. Knowing traveling tends to increase the FM pain and the migraines as well usually. Knowing that, you feel like why would you even want to go? What would be the gain? There is a lot of gain, just of a different sort.

It is that way with the little moments in life. We know there will be more pain to earn those moments but we gain mood improvements, mental improvements, memories, life, glorious moments.

We have to remember however for every moment we want to earn:

  • Pacing: we always have to pace ourselves. Even on those low pain days. Especially those low pain days when we feel like we can do more, but then push too hard and it leads to much more pain. That cycle is what pacing is designed to avoid. No push, and crash, cycling. 
  • Taking rests when it is needed. Even with people it is important to know when you need a break and take it. Tell people that you need one and suggest going for a coffee or lunch or to have a sit down for a bit.
  • Leave when you have had enough. If you have reached your limit no matter where you are understand it is fine to leave early. You do not have to stay. You are under no obligation to push your limits.
  • Remember for things like FM especially that changing positions is important. Do not sit for too long. Do not stand for too long. If you go to an event that requires a lot of sitting time, go for a walk or get an aisle seat and stand beside it for a bit. For any event that requires a lot of standing or walking, ensure you are positioned by somewhere where you have the capacity to take a break when needed.


It can be difficult with pain and fatigue to have the motivation and energy to want to do anything. And I do not mean that we should jump in and go run amok. Just try to fit some moments in there. Fit some life in amongst the pain.


Thursday, January 22, 2015

#socializing and my #insurance company


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 also makes me pretty miserable all the damn time.

So it takes some effort to consciously choose to go out and interact in the world. Choosing at least an enviroment that will be Less painful for one.

But there were times I could not stay long because it just became too painful. There were times the noise and lights were too intense for me too handle. My friends have kids and kids just are not quiet creatures by habit. So I have a migraine when I go. I have to take more medication just to go at all. And more to just stay. And even that is not always sufficient.

Yet.... it does make me happy. I enjoy being there. I laugh. I have fun. I enjoy there company. I leave feeling mentally and emotionally better than when I got there, despite the pain. I know it is good to do things and have a life, despite the pain. As long as you pace yourself. I understand that.

So it was a small step. And a good one. But a 'significant improvement'? Hardly. That would be if I was able to drive and run errands. And leave the house on my own. And socialize once or twice a week. And have a life. And drive myself to appointments. And... how about this... Have Less Migraines. So they are morons. But the point is, getting out of the house and socializing is good for our mental and emotional wellbeing. It can be really simple things. Like going out for coffee or lunch. I was told it could even be going out by yourself to a coffee shop and just being around people. Things like that.

I don't particularly like insurance companies. We as the chronically ill want to improve and will do things to help improve our wellbeing and health. Many things. Many will not have an impact on the pain just helping us deal with it a little. But they don't care if we can deal with it better, if it gets better, if it could get better... they don't have the time to wait. They just want an excuse they can use to get you off their list. It is pretty pathetic. All they had to do was wait for me to finish my treatment with the pain clinic, but apparently they think they know better. And clearly they do not. No idea who they hire at these places but brains must not be a prerequisite. Just ruthlessness I expect.

Patients with #fibromyalgia had worse #cognitive function than those with rheumatoid arthritis


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)


Reference:
Katz R, et al. Paper #1112. Presented at: American College of Rheumatology Annual Meeting. Nov. 14-19, 2014; Boston.