Tuesday, March 3, 2015

Thinking a little on #Lifestyle #changes

One should never compare yourself to how others are doing when it comes to chronic illness. That being said there are some people that I really admire for the things they have accomplished. I read some comments about some people who are doing phenomenal with exercise programs. Others doing well with massive changes to their diets. Others who have quit smoking, are exercising and doing changes to their diet all in one massive go.

I love these stories. I like to think they say 'suck it chronic illness!'

I also like them because they are inspirational for those of us struggling to make lifestyle changes. It suggests to us that a) it is possible and b) we might in fact get a positive result from it.

Lifestyle changes are very difficult because we do not see a result right away. Often we see the opposite right away. Things get worse before they get better. Not exactly encouraging. Also it takes a lot of willpower. And not in the ordinary sense of the word either. It takes chronic illness willpower. We are tired. We are fatigued. We have little energy and willpower is something we use to get up in the morning. To do necessary tasks in the day. To to these extra tasks is difficult. Very difficult.

They are worth attempting. I always suggest starting slow with baby steps. Never compare yourselves to the pace of others. Like for exercise, find your minimum baseline and then you slowly increase from there based on your comfort level. And everyone will proceed from there differently. As I know, since it is slow going for me. Same thing for mediation. No one is going to hit that zen zone out of the gate. It is recommended you do five to ten minutes a day and slowly you just get better and better at it.

We all understand the need to break bad habits and make new habits that will be beneficial to us. However it is a process. We don't even know what combo of things we do will even have any effect and so that is difficult on us sometimes. We do all these things with potentially no return. I like to think of it like this; we do all these things and there is a potential for return, like each one might do a slight bit such that it builds up to some sort of impact. And some sort of impact is better than no impact. Even if that impact is just increasing my capacity to cope with pain.

So to those who have achieved these goals and have had a positive impact on it, this is awesome to hear. We need to hear these positive stories to give us a boost once in a while. To hear that exercise is possible and had a positive impact instead of flat out impossible and had no impact. It is good to hear about the positives and the possibilities. We simply do not hear it enough I think.

Sunday, March 1, 2015

Look at that I am #smiling in #pain

I have chronic pain ever minute of every day. Right this minute. And you know I am perfectly capable of being happy. Of smiling. It does not negate my pain. Right now I am kind of mellow with pain on a 7. 7 is a decent pain day really. 6 would be better, but far less common.

It is also true that I can really, really fake a good smile to mask that pain. But then we learn that trick very well.

However, I can be happy. I can be in a very good mood. This is not impossible. It is just seriously strained and difficult to maintain when the pain level gets up in the 9 area on the pain scale. But that would be the same for everyone.

This is not to say that chronic pain does not affect mood because it definitely does. The pain itself does. The lack of sleep does. They both affect serotonin so maintaining mood can be difficult. And sometimes we have to actively try things to just boost our mood in different ways. Or just actively not spiral down the black thought road and distract ourselves.

Pain is complicated like that.

However, I don't like this assumption that we cannot be happy and Still be in pain. We cannot be smiling and Still be in pain. Of course we can. We are very good at this pain gig now. We have learned from the master... that of just continuously being in the state of pain. Yes, I can imagine someone in temporary pain in the 7 or 8 level might have a problem being happy about it. But I am always in the 7 and 8 levels and sometimes the 9 level. So I have adapted a bit to it. I understand I need to live in with the pain. Jokes and laughter have always been a great way for me to cope with pain to be honest. We still have the pain. It doesn't go anywhere. It just means we are trying to push it to the side and enjoy a moment the best we can.

Wednesday, February 25, 2015

Will be working soon...

It looks like I have a return date of April 1st from my employer. They have been contacted by my insurance company with my status. However, finding a place for me will be tricky given the economy as it is. Not many positions open. Not many people even moving around. So they will keep me updated on where I will end up.

Nevertheless, it was good new to hear from them. I realize with a chronic illness there is only so much improvement I can actually expect. But I have gone in the right direction. The rest is sort of those coping skills I have learned along the way of dealing with the pain that is inevitable from there. That is not to say that I will not continue my progress with the pain clinic however, as that is vital. I am thinking of asking them to go through another round of BOTOX as my first trial of it was not the recommended shots and was a long time ago. Worth giving another go, while I am doing my exercise regiment.

The point is there is a lot of value to working that I miss in my life. That void is hard to fill. In some ways I can, but in others I cannot. One thing I value is being engaged in the world. As a hermit I tend to be reclusive and this benefits me little. Working enables you to connect with people on a daily basis. This is a good thing. I enjoyed that. I missed it when it was gone. I did what my psychologist recommended by going out and socializing... a tad, but being engaged daily with people is really feeling that connection to the world. So there is that. Secondly, financial stability. That is something I find the lack of is very stressful to me. I am the sort that does not like debt and likes to save. But I cannot save if I must adhere to a very firm extremely tight budget. Third, is being intellectually engaged. This I can do to some extent on my own. But the more the better in this regard. Sometimes I feel like my brain is going to mush. And I feel like the lack of routine does not help with this. You just sort of stagnate.

I feel like it is a good thing that I am up for the challenge. I wonder if I should feel that way. I am a little more wary than I used to be. Several times burned by my brain in regards to work. Yet, I comprehend my options. I have a practical view of the situation and this seems to be the best scenario I can think of. To be honest I like the idea of it. There are so many aspects of working you miss when you are not. I understand the aspect I do not miss is the pain, but then the pain, that, is there anyway. 

Thinking about my thinking

One thing about chronic pain and chronic illness is that you have to keep on top of the thinking about it. Because it is an emotional experience. It is something we react to. It is not just a physical experience. This can be in the form of comorbid mental illness like depression and anxiety, but it can also just be in the form of beliefs and thinking that do not help us at all.

Here is an article I wrote on chronic pain and cognitive therapy to give you a general idea of some of the things that we do.

Here is one I do often: "Overgeneralizing: Just because a situation went down badly once, does not mean it will always go down the same way. While this seems self-explanatory think of all the times you say 'this is always the case'. Sometimes we believe after trying many treatments that we never will find a treatment. Or if we are in a bad work situation we feel it must always be this way that we must suffer this way forever."

The fact is I am guilty of a lot of these and it is because chronic illness and chronic pain run us down and they are emotional experiences. The thing we have to remember is that we Have to keep on top of this. Negative self-talk and minimizing the positive are not good things to be doing for your mental and emotional well-being.

I have to remind myself constantly of this fact. You see, when I was younger and going to university as a freshmen I had some problem dealing with pain and being on my own for the first time in my life. The pain and the lack of a support system was difficult and I got depressed. What helped me immensely was a chapter in a book on depression and that chapter was all about cognitive therapy. Because it helped so very well in helping me cope with my chronic pain and I thought that was it. Done. Good job. But no, this is something we have to attend to constantly.

You have to learn to pay attention to these thoughts. Then think about them. What is wrong with that though? Well it is negative. Or generalized. Or whatever. Then think of a more reasonable thought to replace it.

'I will never get treatment that works'     or  
'I have to try because there are many treatments to  try and one might be for me.'

'My pain will never end' or
'I will have pain but maybe I can reduce my suffering, cope better and have more quality of life.'

You can even practice this. You can have a journal where you write down the thoughts that occur to you and then write the more realistic version.

The point is we need to counter them in our minds. Actively say the other phrase to counter the other thought. The brain learns and is like a broken record it will keep playing the tune it was taught. To teach it a new tune you have to beat it into it.

I must say when I am stressed out in life these sorts of thoughts plague me more. It is hard enough to manage them just due to illness but stress and illness do not play well together. It is just an added element that makes everything that much harder to deal with.

Monday, February 23, 2015


I want.

How do you ever stop yourself from wanting, I wonder? Wanting more than you can have due to the limitations and restrictions of your health?

I believe that the guilt we can have over our lack of productivity stems from the idea we should be more productive and Also the desire to be more so. Like everyone we thrive on being engaged in the world around us and involved in activities that consume us. That lack is felt.

This sense of dissatisfaction and discontent fails to leave me because I want more. I want the impossible.

The irony is when I get it I feel the pain of it all. I know what it is like to work full-time. It is an unpleasant experience I will not forget any time soon. One that saps the very desire to even survive from a person.

Yet I want.

I want what I want. Maybe because there is this glimmer of hope. This perfect ideal work from home job that exists for a few.

All I know is that the desire never leaves us. To be fully functional and engaged in the world to its fullest extent in every way we want. Have all our wants. The desire is there, but the functionality is simply... not.

Erratic #sleep and #Painsomnia

I have been interviewed for the May/June issue of Arthritis-Self Management magazine on an article they are doing about insomnia and pain. Ironically this is also the topic of an article I recently wrote for Fibromyalgia Aware magazine.

And a profound problem it is. I have to say when I was working insomnia and pain were my worst of enemies. You see my insomnia is profound. It simply is not suited to a 9 to 5 job. So you force it to fit and by doing so, get very little sleep. Getting very little sleep is a migraine trigger. So they became more frequent. Having an acute migraine before bed made it very difficult to fall sleep... and so the cycle goes on. There were days I did not sleep at all. Days I worked with only a couple of hours of sleep. And as a result a Lot of status migraines. That is, migraines that lasted more than three days... or days and days... weeks. The mental impact of status migraines should never be ignored. They are powerful indeed. To be in that sort of pain from the moment you get up to the moment you fall asleep, assuming you can, for weeks.

All of that because of Insomnia. That is how powerful insomnia is. For a brief window I am still not working and for that I am thankful, but when I return to work I know this cycle will continue because this factor has not changed. You see not working helps in the sense that if I go to bed and I cannot sleep due to pain or due to profound insomnia, well, I do not have to get up at a set time in the morning so I can get some sleep. So it does not become that horrible migraine trigger. As a result, while I have daily migraines, I do not get status migraines. That makes a profound difference. Yet clearly my sleep is still as bad as it was. Days when I get very little. Days when I get none at all. It is very erratic.

Painsomnia is a massive problem all on its own. If you are in severe pain at night it is impossible to sleep. For me it certainly goes far beyond my sleeping such that it simply becomes ineffective. I have painkillers but they are not very strong, therefore I do not sleep. And that there is the problem. If you cannot manage the pain when it is severe, then you cannot manage your sleep.

Insomnia itself is its own very special problem. FM comes with its own unrefreshed sleep issues. You can sleep four hours or ten and you will still feel like you got nothing. You will wake up numerous times at night. Sometimes you will sort of just hover in stage one sleep like you just cannot actually sink into a deep sleep. It is infuriating. I also have delayed onset sleep... so it takes hours just to get to sleep. For insomnia I take a sleeping pill. Because it is pretty profound insomnia the sleeping pill is not that strong for me. I have taken other sleeping pills for short durations and they also were not that strong. I used to think it was the pills and it has become clear to me it is just me and my insomnia that is the problem. I think they are designed for a different sort of insomnia. So they just do not quite cut it. I get a better sleep on them. Some better quality. I wake up less I think. And fall asleep a little faster I believe. And I get to sleep faster, on nights when the pain does not interfere with that. So I sleep roughly five hours with them. It might just be that I have had this insomnia since I was a child and that is a long time to have ingrained this into my brain.

Saturday, February 21, 2015

#brain out of order

I have had a severe migraine for the last two days. My migraine triptan medication has failed to be effective. I am absolutely and profoundly fatigued. I have also been having some severe painsomnia as a result because the pain level is just too high to sleep. Then I can't get up in the morning and when I do I am utterly non-functional.

Brain has melted.

Words are not coming out as they should.

I forget what I am supposed to even be doing.

I do small actions wrong. For example my spouse brought me home a latte. It had a stopper in the top to prevent it from spilling in the car. I Meant to take that out. Instead I yanked off the top quickly and split coffee all over the place. Simple action, but the wrong one. This sort of thing happens a lot with migraines. You mean to do something and just do something else. You mean to say something and say something else. You mean to go into a room to get something and forget what you were doing.

Out of focus fuzzy brain pain sort of day.

Frankly the longer the migraine the worse it gets because you get so very tired. The pain really wears a person down. I am in need of a break already and trust me, I have had migraines last longer than two days. Status migraines last three and I have had one last three weeks. Now That is a hellish experience not worth repeating. Surprised you know your name after that.

Tuesday, February 17, 2015

#stigma and invisible #disability

There is something that is really beginning to frustrate me about the label of disabled when it comes to invisible disabilities. And that is there is no winning with other people. No matter what you do, or don't do, you will fit in some sort of stigma thinking that just makes no sense. There is a stigma out there for you, in other words. No matter what.

Let's say you cannot function at all. You cannot do modest housecleaning. You cannot do mild or moderate exercise. You cannot work. Well... then I am afraid you are doing nothing to help improve your condition and you are partly to blame for how you feel. In a way, you must be lazy. Maybe faking the intensity of it for attention. One of those three a) not doing anything to cure yourself b) faking it c) lazy. This comes up even if you are disabled but modestly functional and doing plenty of things to improve your quality of life... just not enough apparently.

Or you can do modest housekeeping some days. You can do mild to moderate exercise some days. You can't work but you are doing as much as you can to improve your quality of life. And because of That... you are seen as too functional to be disabled. Therefore, you must be lazy because you should be working. Clearly you have the capacity since you can do a mild amount of other things on good days, right? By the very fact you are trying you are seen as completely functional. As if they cannot tell all the effort that a person goes though to do all those things. All the effort to be mildly functional on Some days. You just don't Look disabled enough. Because you were just doing all the right things you should have been doing, instead of.... apparently not.

Apparently there is this 'image' of disabled being completely and utterly non-functional and as soon as you 'do' anything... you are seen as functional. But when you 'fit' the image you are not 'trying hard enough'. When you 'try hard enough' you are then poof too 'functional to be disabled'. Like they have this imaginary line you cross from one to the other because of their conception of what disabled means. And it Does Not Mean that. Someone who is disabled can do a great deal to improve their quality of life, not like anyone else helps with that, and Still be disabled.

So what does disabled Look like? How does disabled Act?

It frustrates me to no end that a person on disability from work or disability with the government cannot improve their quality of life; socialize more, exercise a bit, see a psychologist, do meditation... whatever it takes and have that seen as making them 'too functional to be disabled'. It is like they want you crippled by your disability. Maybe it is just Insurance companies that do this sort of thing. But I suspect government disability people can be just as devious if they want to cut someone off. I would warn you if you are on disability to be very careful on what you say to those people. Very careful indeed. They will choose very silly reasons, don't give them any. Tell them only what you cannot do and why you cannot do it. Because this stigma is pervasive.