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Showing posts from July, 2016

I am strong. But I am tired

This describes me in this moment. 

I am strong. I will do what I have to to get things done. Hell, I'll smile while I do it. I will take that pain, wrap it up in me, and go forth and conquer the day. It won't feel like victory though. It will feel infinite. 


How long is forever? Every minute is forever, when you are in pain. So work is infinite. 
Nevertheless I do it. Because I must. I am strong, I say to myself insistently and repeatedly. 
But I am tired, I whisper back.

If pain can seem infinite in a second. Then fatigue can weigh a ton. And mental fatigue can feel like my brain has given up on that thinking thing. And I am tired of struggling. Of fighting to work through the day. Of the pain itself. I am just so tired. I feel like I could sleep for a thousand years and it wouldn't be enough. 


What to do? Well when you are tired of it all it is because you are stressed. Coping with the pain has put a strain on you. On me. We need to take some time for ourselves. For ourselves.…

New anxiety

I have never had anxiety before. Aside from the anxiety associated with public speaking, of which I was terrified of. Anxiety about when my pain will hit has also never affected me. It will strike when it strikes and i will cope with it when it comes.

So it surprised me suddenly that I have been waking up with morning anxiety. It is like a surge of emotion, unpleasant overwhelming emotion, that socks it into my chest. Right as I start to wake up I get it.

These are the symptoms of morning anxiety as per Healthy Place:
Rapid heartbeatFeeling weak, faint, or dizzyTingling or numbness in the hands and fingersNervousness, sense of terror, of impending doom or deathFeeling sweaty or having chillsChest painsBreathing difficultiesFeeling a loss of controlFatigueInsomniaTremblingMental confusionWhat I am getting is my heart is going wonky for sure, but what I really notice is this overwhelming feeling... that impending doom feeling. That is what I get. There is a feeling of loss of control. 

So w…

Lack of continuous sleep in Fibromyalgia #BlogBoost

Fibromyalgia has some pretty distinctive sleep disturbances associated with it not to mention comorbid sleep issues. It is one of the key factors in the syndrome... our inability to attain refreshing sleep. I wrote a post about it here. So it interests me that they have done some recent research in this area. One of the important things about our sleep dysfunction is that since it isn't presenting like regular insomnia the treatment likewise has to be different. Lack of sleep, as we are all aware, can cause a lot of symptoms. 

So the recent Canadian study in Ontario took a look at 132 subjects (109 insomniacs and 52 without any sleep difficulties). During the two night analysis their sleep was recorded by polysomnography; electrodes placed on the face and scalp of the subjects enabled the researchers to look at sleep latency, the stages of sleep, sleep cycles and duration of sleep.

With fibromyalgia and insomnia subjects have issues falling asleep, compared to controls and they have…

More than my battle, but the battle is significant part of me #BlogBoost

We have to make the distinction that we are more than what we battle with. I am more than my pain. More than my migraines. More than my fibromyalgia. More than this battle. It is important to cognitively separate ourselves from our conditions. To know we have a life to fit into our illness. Choices to make that ensure we have a life in there. Living With our illness.

Yet, when I think about the fact we are more than our battle... I think that battle is a massive portion or our Daily Existence.

Not our Identity. Which is significantly more substantial. I am a so much more than my illnesses. My illnesses have, of course, changed me as I have adapted and reacted to the constant stressor in my life and compromised to enable myself to cope with the illness. Naturally changed me in many ways. But obviously I am a fully developed person that goes far beyond my illness.

But the battle is a massive portion of our Daily Existence and that is something that is pretty fundamental. I am constantl…

Brainfog, when it isn't just about the pain #Blogboost

I have been struggling with work lately. And by lately I mean always. Always struggling to function through the pain. Always not quite doing it.

My psychologist said well I cannot compare apples to oranges. I cannot compare myself to people doing the same job perfectly healthy. Nor to myself when I was healthy-er. And it did occur to me that this job I am now doing wouldn't even be a challenge to me when I was younger and in less pain than now. But the pain now has eaten away at my cognitive capacity with the FM and the chronic daily migraines. Not enough space in the brain to focus on much other than tolerating the pain.

Here is the Thing.

The thing is I am permanently this person that is confused, befuddled and living in a pain haze. This is who I am. No matter the job. Good days and certainly, by far, on bad days.

And I don't like it. I don't want to be this person. This person frustrates the hell out of me. I just want to do my job... hell A job effectively and effici…

How do you do it? #BlogBoost

How do you do it? They ask. And then say "I wouldn't be able to handle all that pain every day. A migraine every day?" Not counting the FM which they often do not mention because they don't know what they would feel like. But worst headache ever captures their attention.

And I say... "You get used to it." Because you do. You have a baseline pain all the time and it is your new normal. You develop Tolerable pain and Functional pain. And what to do with Intolerable pain and Non-functional pain. You get used to it. I say that though because it sounds better than 'I have no idea how I do it. I just do. Because I have to. And god damn do I wish I didn't have to.'

But the real answer is WE MUST. We were never given a choice in the matter. It was put upon us and we had to learn the hard way how to cope with the chronic pain  as best we could.

WE MUST because in order to live, move or do anything we have to do it with the pain. So we learn what to do wi…

Guest Post: 5 Tips for Explaining Migraine Pain to Others

Poem: Functional #BlogBoost

Functional

FunctionalPut on a mask.Smile.Blend in.But different under the skin.Writhing, seething, beast of pain within.Adjust the mask.Smile.Functional.

I am trying very hard to be functional lately. And it isn't working well. But I hide all that pain beneath a well crafted mask. Doesn't change the fact functioning is very difficult to manage with pain. 


10 things I would tell the newly diagnosed about what they will face #BlogBoost

I wish I had been prepared for the impact or what was going to happen in my life from chronic illness. Realistically. I had a firm belief back them I could limit the impact by choosing a specific job and as long as I was engaged mentally, it didn't matter I was hindered physically. I didn't think of the radius pain has. It never occurred it would get worse, complex and the impact would affect all of me and all of my life. If I wish for one thing I could have known that first day of diagnosis... is the impact it was going to have.


Your social life will change: You will go out less often. You will lose friends. Have less friends and likely gain a lot of online friends. There a vibrant online communities for the chronically ill. We reach out to them to feel less isolated and to calm and fears we have about our illness. To share our concerns, fears and coping. However, in the real world we may not have much energy reserves to go out and do activities often. We may cancel plans whe…

But you don't look sick #Blogboost

I would like to recommend a great chronic illness support site called But you don't look sick. In particular this is where the Spoon Theory was created by Chistine Miserandino. Well worth exploring the site for articles to read. Then there is always the Facebook Page to check out as well.

The Spoon Theory is a way to explain dealing with a chronic illness to others.



It is in the cost of spoons. So I got out of bed a got dressed and I used 1 spoon, today. I did some light chores and used 4 spoons. Or I went to work and used 10 spoons. I may have started with 8 spoons, or 6, or 10... so I may be overly exhausted or may have just reached my limit or stayed within my limits. Point is we have to watch our spoons. A regular person will start with 30 spoons or hell I have no idea but they do not have the same limits. We have to be careful of the choices we make based on the energy and pain and fatigue we have that day. Exceeding our limits means less spoons for the next day. If you follow…

Remission in Fibromyalgia? #Blogboost

A 2 year long study In the Journal of Pain regarding Fibromyalgia has found results that suggest that Fibromyalgia ebbs and flows. Makes me wonder. There are years where I wonder if treatment is failing me because things are so much worse and other times when I think what I am doing must indeed be working because the pain is getting a little better. Pain wise. Other things not so much. But then with other chronic illnesses in the mix it is hard to say. Even with pain, as in my joint pain from the hypermobility syndrome, that is always there.



THE STUDY:
Published online 2016 Jun 1. doi:  10.2147/JPR.S100043

There was previous research that had indicated 20-47% of diagnosed patients may not fit the criteria of FM 1-2 years after diagnosis. So this study looked further into this specific issue.
MethodsThis cohort study followed 226 subjects recruited online to assess FM and chronic widespread pain (CWP) diagnosis stability over time. At enrollment (baseline), subjects provided informed co…