Skip to main content

Posts

Showing posts from 2017

Monday manual: Mood

Preparing for work with chronic illness

The Brainless Blogger is returning to work, once I get all that sorted out. I had to get a new vehicle because my brother hit a deer and wrote my off. So that part is taken care off. And I need to get my migraine Botox redone again so that side of things will be done. Then just the work side to get done.
Working with chronic illness and pain is a complicated thing. We have a lot of strategies we use at home to cope with pain and illness that we have to somehow transfer to the workplace to cope with the pain, fatigue, and illness. What I do, is by no means what you may do but it is how I transfer things over with my two primary illnesses fibromyalgia and chronic migraines.
Mental illness- I had my depression due to pain treated, which was necessary. It was compromising my capacity to cope with the pain. So that was a step that was needed. And I am glad it was done. I feel much better for it.I saw a pain psychologist regularly and learned a bit about acceptance and pain management. And …

Monday Manual: recommendations for fatigue

Monday manual fatigue part one and now the recommendations....


BONUS:
Take Rhodiola. (Pronounced Road-o-weena. Silent L. Inserted sneaky W. We are not sure where the N sound comes from). Researched for fatigue this may give you a boost. Always talk to your doctor about new supplements. Not because they will know anything about them or contradictions, but because it covers our liability for mentioning it.Take random supplements and herbs until it creates some sort of energetic concoction that may or may not be illegal in some States. Name this concoction after yourself and sell it, thus making you rich and, therefore, enabling you to retire early and manage your fatigue.

I don't need approval

I am in pain.
I don't need to validate that pain to anyone.
I cope with chronic illness and pain in many ways.
I don't need anyone's approval of my methods.
All I need to do is live the best chronic illness life that I can.

I don't want to fear life for fear of the pain. The pain will always be there. I want to cope with the pain the best that I can so that I can have the best life that I can. And that involves several strategies and some acceptance of the pain itself and chronic pain management.
I have a life to live. I want to live it. Carefully. Moderately. Pacing. Doing the work I need to do. Getting the treatment I need to get.

Maybe I should...
Why don't I...

No.

I am on a path. I am trying the strategies that I want to try right now. If they fail I will move to the next strategy and the next and the next. I find what works, and I keep it. I find what does not, and I discard it. Every single on of us is different. We often do not need the random health advi…

Frames of Mind

Announcement of this awareness campaign has come out to post your art to help awareness of migraine.
Select submissions chosen by notable migraine experts will be displayed at the 59th Annual Scientific Meeting of the American Headache Society from June 8 – June 11, 2017 at the Westin Boston Waterfront in Boston, MA and other migraine-related events throughout the remainder of 2017. Additionally, art submissions will be displayed on the My Chronic Migraine Facebook Page.
So consider participating in this migraine awareness campaign via art that expresses your migraine experience. Not one for art myself, since I am not too artistic. More for the written word; fiction, poetry, essays- that sort of deal. But I will be eagerly awaiting to see what everyone comes up with.

Research: looking at sleep and fibromyalgia

I have talked about fibromaygia and sleep before.
See:Fibromyalgia, sleep hygiene and insomnia
Lack of continuous sleep in Fibromyalgia #sleep duration and# fibromyalgia #pain intensity Now we have another study looking at our quality of sleep and sleep dysfunction in fibromyalgia. It is one of the hallmark symptoms of the syndrome. This study unsurprisingly states we have difficulty falling asleep and worse quality sleep compared to control groups of healthy individuals. Surprise! Not really. Sort of knew this from my actual sleep. The study Sleep Disturbances In Fibromyalgia: A Meta-Analysis Of Case-Control Studies was a meta-analysis of previous studies. I rather like these because they are reviewing a lot of combined data. In this case 25 studies with 2,086 subjects in total.
Studies evaluating sleep with polysomnography reported significant differences between fibromyalgia patients and healthy individuals concerning wake time after sleep onset, total sleep time, and sleep efficienc…

Review: Fibro Soothe

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "




Prohealth offers the product Fibro Soothe. I personally am pretty interested in these fibro supplements and I have tried some before. They save me from having to buy so much more, and I can just buy the one to take regularly to help my Fibromyalgia. Right there is one perk.

It contains: Frankincense, Turmeric Longvida, DL-Phenylalanine, Ginger, Devils Claw, Ashwagandha, Bromelain, Papain, and Turmeric Powder.

I am pleased to see Turmeric on the list as well as Ashwagandha and ginger.

Turmeric: Within Turmeric is Curcumin, the active ingredient which is well known as an anti-inflammatory. The site says it may 'Promote soothing comfort in muscles and joints.' Fact is, FM is one of those syndromes investigated for low-grade inflammation so this i…

The Manual: Communication about pain

The manual will be every Monday in April, then bi-weekly after.

Poem: Time

Time Lost days, melded into decades.
Concentration, focus slid away.
Memories erode and it all fades,
Locked in infinite pain, time's prey.

Monday Manual: Fatigue

This is a new humour section on the blog for Mondays. Starting with the Chronic pain Manual and moving on from there.

Research into brainfog and FM w/ depression

The Spanish study in the Journal of Clinical and Experimental Neuropsychology  called “Cognitive complaints in women with fibromyalgia: Are they due to depression or to objective cognitive dysfunction?” recurited105 women with fibromyalgia for their analysis.
Fibromyalgia is characterized by widespread pain, cognitive dysfunction, sleep dysfunction and fatigue. However, the cognitive dysfunction of fibrofog with its concentration issues has not always been thought of to be from the FM. Studies have shown it is from the pain, from the sleep dysfunction and even from depression.

Results:
Eighty-four percent of the patients reported subjective cognitive complaints. Depression scores, everyday physical functioning, and working memory performance were most strongly associated with subjective cognitive complaints. These three variables were significant predictors for subjective cognitive complaints with a final model explaining 32% of the variance. StudyIn conclusions “Cognitive complaint…

Review: PillDrill

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "


I have been trying out the PillDrill for a bit now and I have to say I wanted to review it right of the get-go because it is pretty awesome. But I thought, give it time and see how it works for me over time to see if there are long-term benefits. Because I must say I was very impressed quite quickly. Just opening for someone with a chronic illness was like opening a toy at Christmas. You just know this will be awesome.


So let me start by going over the basics of the system. In the picture above you see a pill box with days of the week. It comes with four rows for times of the day you take medication; I use three of the rows currently. The system alarms when it is time to take your dose and your take out that day's little capsule and scan it. Don…

Migraine World Summit coming next month

The summit is free to join. It gets together a bunch of experts on a variety of topic lectures for us to check out. It was Awesome last year. I recommend anyone to check it out with migraines.

Lack of reliability and disability

There is this lack of dependability and reliability that comes with being incapable of working. You prove it by trying and failing. Sometimes over and over again as I did. And failing and destroying your self-worth while you are at it. 

So you have to understand you can't do it. And you will the void in whatever way that you can. 

But some of us have no money to substitute the lost income. We are trying to find ways. Applying for disability. Or trying to find maybe something we can do from home... that we are not even sure we can do either, because we doubt it would be any different. We are stuck in limbo. Worried all the time about money. And what to do about it. And how to survive when we cannot work and we cannot survive not working.  We suffer financially and don't know what to do about it. I personally have doubts I can do any work at all given my lack of dependability and reliability due to the variable nature of migraines and fibromyalgia combined. And I don't want to…

What to do working with chronic pain

I and my employer at the time when I was younger were prime examples of what not to do for people with chronic pain in the workforce. I pushed through. They gave ultimatums, demoted me, threatened to demote me and much more horrible things. So what is the way to go about it?

In the beginning, this is the way it should go:

Employer: What can we do to accommodate you? Ergonomically correct furniture, keyboard or desk? Let's call HR and get them to send someone to do an assessment and then make your office the best working space possible for you.

You: What can you bring from your own self-care to the office to help you at work cope? Can you bring an aromatherapy diffuser for your office? Can you find a space to meditate on breaks? Can you where migraine tint glasses? Can you do stretches on your breaks? Can you bring magnesium oil or other balms for use at work?

When you are not coping well,

You: Need to assess whether working full-time is working for you or not. If not, what can be done …

Be more cat

Be more cat. And nap. They know what they are doing. Nap when they need to and, clearly, they have no guilt about resting. 

They play when they want to play, and never feel guilty about having leisure time. 

Although, very much like us they are very stoic when in pain and you can never tell that they are. But they are better at self-care than we are, man. They got it Down.

And when they give me snuggles I know they make me feel a whole lot better. They are magic that way. Snugglebuts.

I shall be more cat and nap when I need to, I think. And drop the guilt.

Rhodiola rosea: my fatigue brain

By Hedwig Storch (own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
I have been using the supplement Rhodiola for fatigue and mental fatigue. What I can say is that the research is great for fatigue. I can also say that at my dose of 105mg I do see the benefits to it, but I believe it would be better twice a day. It seems to help after I take it for a certain duration and then I slump again. Although, with both fibromyalgia and migraines I can see why I would need an additional boost. Nevertheless, it is noticeable which is rare for supplements. 

Research suggests that it significantly reduces fatigue. And that in people who are fatigued helps with cognition issues, related to the fatigue... in other words, clears up the mental fatigue cloud. For a daily preventative of fatigue, it can be beneficial in as low a dose as 50 mg. "Rhodiola can improve cognitive functioning in persons who experience a reduction in fatigue, but there is insuf…

Blogger has new Themes

I have been changing the theme. Then again. And again. Trying out new themes when I found out my old one wasn't converting well to other screens. So needed a new one. And then they came out with New ones. I was eyeing up three of them.

This is the winner. Maybe. I will see how it rolls. Tell me if you like it.

Children and Migraines

Presentation courtesy of Diamond Headache Clinic.


As the slideshow above indicates children can present differently with migraines. It can present as Abdominal Migraines, for example. Even when migraines run in your family it can be easy to miss the indications of a child having signs of Abdominal Migraines, unless you yourself experienced the same thing as a child.

It is difficult to diagnose as well and is based on medical history, migraines in the family and a process of elimination.

Treatment is also a complicated issue since we are dealing with children. It is definitely something that is considered carefully and is very dependent on frequency and age. For older children, who do get them frequently, they are treated with the same preventatives as other migraines.

A study at the University of Alabama in Mobile found that migraines in children didn’t last as long as they did in adults. The pain in kids appears to occur rapidly, become intense quickly and typically last between one hou…

What it is like to have effective depression medication

First I would like to point out it isn't always easy to find effective depression medication or even at all. It can be complex and not responsive to medication. Depression in some cases can be far more severe than mine and much more difficult to treat. In my case, I cannot take antidepressants because I am sensitive to them which leads to suicidal thoughts and actions... which is sort of counterproductive really.

But when you do find effective medication it is pretty amazing really. I can literally tell when I would usually be in a major dive and I am just Not. It takes away the deep dives. Which are certainly the most frightening aspect of this depression. Deep dives are when I do have suicidal thoughts. Not to mention a lot less suicidal ideation, period. Coming from someone with chronic pain that is a major boon. High pain would plummet my mood and spike suicidal ideation. One would think the depression was directly pain related, but it was more a trigger. I was told it was Majo…

Lost Day, self-care and high pain

Today was a lost day. Days consumed by pain where functionality is lost and nothing gets done. Just a wasted day it seems to me. And I often wonder how many days get lost to the pain. Better not to ever have that question answered really.

It is our days of self-care.

But today I sort of just melted into the couch. Even now the pain has such an edge to it I really don't feel too intent on even distracting myself. Feel more like curling up into a ball sounds like a fine plan of action. 

So fine. Maybe I should curl up into a ball. Put some ice on my head. Get some aromatherapy for my nausea going. Just relax into something that requires no brain effort at all, like watching some Netflix. With my Axon migraine specs on because I am having some serious light issues right now. 

I have been tracking my everyday progress because my psychologist wants me to. It is a way to show what you accomplish each day, track your exercise and set some sort of goal for the next day as well …

Eternal frustration with Insurance

I'm at a point where I am unable to fathom what to do with my insurance company. Clearly, I am chronically ill. Clearly, I was on long term for it. I returned to work and it didn't work. I went down to part time, it didn't work. My doctor and psychologist wanted me back on long term. My insurance company wouldn't go for that and said it had to be short term... and apparently, despite to fact I was literally just on long term for the exact same thing denies there is evidence for it.

My doctor and psychologist essentially put it this way. I cannot work outside of the house. And I should try to find a work from home position. So the idea was go on leave from my current position and use that income until I found a replacement, which is a little difficult to find in Canada... easier in the States. However, what I have done instead is go into a lot of debt and borrowed a lot of money because my insurance company will Not cover me... due to lack of 'evidence'. 

I am app…

5 mistakes we make with chronic illness

In the beginning, we make some mistakes with chronic illness. Then we often repeat those mistakes later on. I have made so many of them because I am stubborn and like to learn the hard way
Ignoring our mental health- this is a big one. We have say chronic pain or some other illness and we ignore the mental health issue. We feel we can 'handle it' on our own. Some of us may think it is a weakness and we have to deal with it ourselves. Some of us are ashamed of it. While others are afraid of all the stigma associated with it or the doctor stigma. This is if your chronic illness isn't in this category, of course.Not pacing- We do the Boom and Bust causing us more pain than if we paced all the time. We feel this Need to be productive on good days and overextend ourselves. It is like we feel guilty for all we don't do on bad days and have to compensate on good days. Yet it hurts us to do this. If we pace all the time our pain is more level all the time.We guilt- We feel guil…

This isn't the easy road

So two roads diverged in the road. And my body took the hard road. It made all the difference. I would have said 'Hey, look at that easy road... let's check that one out.' But Noooo, it wanted a different path.

So chronic illness isn't the easy road. I don't have to tell you that.
There about 801 things we do to 'maintain' our chronic illness selves.






And still we struggle. I know I do. It is the pain. It is a difficult thing to cope with. I can't function working with it. I get severely depressed at times. Suicidal even, because I want the pain to end. And still I try. Still I do my 801 things and try to maintain. Because although I want the pain that will never end to end, I don't want to cease to be. Not really. I want to cease suffering.

And yeah I rock my chronic illness self. I am still here. I am still trying. I am still trying new things. I try new ways to cope. I fight the good fight. I have kept my sense of humour.

I don't need …

Fibromyalgia and Opiates for pain: Helpful or hindering?