Saturday, November 28, 2015

Drop that damn guilt

I was thinking today about work. How this leave is longer than I intended and how I feel very guilty about this. How I went on leave at all and let down my boss who is a great boss. How I wish I was well and this wasn't an issue.

Then I stopped myself and said. No. It is not my Fault I am ill. Not my fault. Not my fault.
And I have to do the things to improve and maintain that health. Ensure it does not get worse. Sometimes these things are necessary and this one was necessary, due to my mental health at the time. I know improvements need to be made. And I should not feel guilty about this necessity.

We have a right to care for health. We should without the guilt of it plaguing us. Situations do not always make us comfortable, but we shouldn't be caring for everyone but ourselves, should we? No we should have our own well-being in mind. When we do it makes it easier to then do the things we can do Within our limits. Taking care of ourselves actually makes easier to handle things with less stress and worry. Because we know we will Not exceed our limits. We will only do what we can and no more.

Catch a guilty that and just tell yourself to stop. You are only human. A human with defined limits. Or do what I said. It is not my fault I am ill. Not my fault I cannot do all the things others can do. I should not be guilty about it if it is not my Fault.

If you exceed them you will feel significantly worse and then the pain will flare and you cannot do anything and will feel more guilty. That is a run-on sentence because that is how it goes and goes and goes.

Thursday, November 26, 2015

Think positive... wellll

Why You Shouldn't Tell Someone With Depression to Adopt a 'Positive Outlook' 

When you tell someone with depression that they should try having a "positive outlook", you might think that you are being helpful or that you are providing genuine advice, perhaps on the basis of your own experiences. But what needs to be understood is that, for most depression sufferers, it is simply not the case that it hasn't occurred to them not to be in a state of intense and asphyxiating sadness that engulfs them entirely. Rather, it's that having a "positive outlook" is not possible. Telling someone that they should be happy when they are not presupposes the idea that we somehow have complete agency over our own emotions- after all, we are perfectly able to change the way we interact with and perceive the world if we just made more an effort to think happy thoughts. This is probably not true of people in general, and it is certainly not true of depression sufferers. In that respect, telling someone to change their outlook is simply unhelpful.

But there's a bigger problem here. It is also important to bear in mind that the lack of general awareness of and information about depression applies to depression sufferers as well. Many have never received a diagnosis or believe that their depression is something else, something temporary rather than clinical. Even those who recognise their depression have still internalized the stigma surrounding mental illness and absorbed the narrative that it is something other than what it is- an illness which ought to be given treatment. That means that many people who suffer from depression will continue to absorb the negative messages fed to them by others, rather than simply ignoring unhelpful advice. So when you tell someone that they can alleviate their suffering through a self-initiated act such as changing the way they feel, the fact that they have not done so becomes a personal failure. In effect, this is equivalent to telling them that it is their fault that they are suffering in that way, and their continued suffering is a result of them failing to change things for themselves. Their condition is self-inflicted because they are incapable of cheering up, unlike all the happy, capable people around them.

The fact is I have a talent for thinking negative. You could pretty much mention anything and I could put some doom and gloom on it without much thought at all. It is the natural thought process when you are depressed and one we have to confront all the time.

I have to tell myself that it is fine to feel certain emotions. Like I am very stressed about my long term disability application and I am telling myself any normal person would feel stressed about this. But I have to stop myself from dwelling on it. From making it so much worse than it is. From creating horrific scenarios.  From making myself more stressed and then feeling hopeless and worthless. Because that is the natural track for my thoughts to just spiral down on.

So instead of think positively which, to be honest seem fundamentally empty to me... I think more think rationally. Think realistically. I try to tame these thoughts and contain them before they get out of control. Or that is the general idea.

Fact is when I make myself think a positive thought... I Immediately think of a contrary thought. It just pops in my head. And it feels more real to me. More profoundly real than that flimsy positive thought I put in there just to make myself feel better. Like I am trying to fool myself. And I can't fool myself. I live with this chronic pain reality and it is a difficult one. There are very real facts I have to deal with.

I think of it like slippery slope arguments. You have a negative thought. The premise is sound or skewed. But you don't even pay attention to it. Instead you load on premise after premise that are more and more skewed until you have the worst possible outlook or outcome. And then think that is reality. I loath the irrationality of it but there you go. It is the automatic program my brain runs on. I will argue against a positive premise because it doesn't feel accurate to me.

So the idea, which is damn difficult in practice, is to stop yourself at that negative thought and think about it. What are you really saying there? Does it even make sense? Is it slanted or skewed? And then try and replace it with a more realistic thought. And apparently if we do this over and over and over again we will break our programming. Or affect our mood anyway.

Telling me to think positive is far too simplistic for what I actually need to do. And I will just counter it with something negative. My brain won't allow it to get in. So then I have to counter that with something realistic anyway. It is like I have a broken antenna. It is picking up the negative signals really clearly but only partially picking up the positive ones. At my worst when I am in a lot of pain and depression is this deep dark hole in my brain... a positive thought is like an insult. I bitterly laugh at it. Its insignificance makes me feel worse.

Holiday Article about #Fibromyalgia and #ChronicPain

This is an article I wrote about the holidays. Always a good idea to post it early since part of the holidays is shopping other social obligations like work parties and other events.

The holidays can be a stressful time of year there is no doubt about that. They are busy and hectic. A lot of your time and energy seems to be given out that you simply do not have. It is a joyful time of year but if we are not careful it can be overwhelming as well.
With fibromyalgia there is often a struggle with guilt. Guilt that we can no longer be a great employee or provider. Guilt that we let down our family. Guilt that we simply cannot be what we would have been. For some reason this can rear its ugly head during the holidays because again we have these expectations of ourselves that we simply cannot live up to. Unfortunately we all also have this wonderful idea of what the perfect holiday should be like; there should be family, friends, food and parties along with holiday joy. Yet the fact is on the best of days fibromyalgia limits what we can accomplish. This discord between reality and our ideal image of what should be causes this guilt. Instead we should be focusing on what we really want to achieve and how to achieve it. The holidays are about expressing how much we care for our loved ones and our friends. We are still capable of that without running ourselves into the ground in the process.

What makes your holiday memorable?

Essentially you need to decide what parts of the holidays make it memorable and important to you and your family. Take those important things and eliminate the rest so you are free to focus on the essentials. You can discuss with our family which traditions they find to be most important and defining to them. Some of which can then be delegated to them. Some people have a tradition of a big family meal that is home cooked but maybe going out for dinner, or having take-in where everyone is free to just relax and visit might be fine as well. Some people have decorations all over the house but maybe just less with a tree might suffice. There might be a tradition of baking lots of home baked goods and appetizers but if these were bought instead would that not be a willing compromise? What traditions does your family have that make the holidays special to the family as a whole? Keep the ones that are important and let yourself compromise on the small ones.

Remember the mighty list

Fibrofog hits at the worst times and planning is your friend as are lists. Gift lists are very helpful because you can cross off as you go along. If you are doing a lot of planning for an event yourself then a to-do list or even a menu list might help as well. Remember not every item has to be completed by you

A large portion of holiday stress comes from the last-minute rush to get everything done. Begin to plan your holiday season at least two months in advance. Put your plans on paper so that they are not lost in an unexpected attack of "fibro-fog." Make a gift list, write out menus and formulate a "to do" agenda. The next step is to simplify and delegate. Look at each item on your list and ask yourself, "Is this really important to me and/or my family?" If not, take it off the list. If it meets the importance criteria, ask, "Can someone else do this for me?" If so, delegate it. If not, your final question should be, "What is the easiest way to accomplish this?" Sometimes we make things harder on ourselves than they have to be simply because we don't take time to figure out whether there is an easier way.
Once you have fine-tuned your list, look at the remaining items and try to accomplish at least a portion of your plan each week. Accept the fact that you will have some bad days. Allow yourself extra time in your schedule so that one or two bad days will not ruin your entire holiday season. By not waiting until the last minute to do everything, you might just have enough energy left over to actually enjoy the holidays.

Budget your time: Shopping can be done online and if you have done so then you are a step ahead of the game. If not then decide what you are getting, choose low peak times to go get it and go for the quick in and out. Not everything has to be bought in one day. Shopping all day in a mall can be quite taxing. Plan your own day with what baking you plan to do, what family obligations you plan to fill as well as regular obligations and ensure there is plenty of down time and these are spread out enough. Not everything has to be done immediately. Allow for time for anything last minute so you are not rushing to get something done in a hurry.

Remember to say No: We have limited energy and pain flares for stress and strain can occur if we exceed our limitations. Therefore do not feel obligated to attend every event or gathering you are invited to. Choose which ones you can attend and stick with those ones.

Plan ahead: Prior to going anywhere whether it is to a work party or family events ensure you have everything you might need to assist you. Have any medications you might need to have on hand. Anything that might help makes you more comfortable as well. 

Consider your budget: In these times when money can be more strained it is important to stick to a firm budget and avoid any additional financial stress.

Maintain your schedule: just because it is the holiday season does not mean you should change your routines. Keeping your regular eating habits and sleeping habits are important to maintaining energy and low stress.

Having company over: In regards to housekeeping we often feel the need to clean the entire house for company, which is an exhausting feat. However, people do not trek through the entire house on a visit so clean the areas people will be in such as the living room, dining room, bathroom and maybe the kitchen. Appetizers do not have to be made they can be bought and appetizer trays are a fine compromise. For the meal it-self other compromises can be made such as having someone in the family cook with you or having parts of the meal be bought cooked already. Or alternatively you can ask the gusts to each bring a dish and you can do the main course. Anything that can ease the overall stress of the preparation of the event.

Wrapping presents- If you have problems wrapping presents then remember you can do this task as soon as you have the gift and no need to wait until later. Or use gift bags which are a nice easy alternative.

Tuesday, November 24, 2015

Intractable migraines

I went to the neurologist office today. I knew going in there was nothing he could do for me because there was nothing he could do for me last time. My migraines have not been responsive to treatment he said. Some people just are not responsive he said. Intractable migraines.

What I wanted was something to hopefully treat the migraine associated vertigo (MAV) angle and the persistent migraine auras. Migraine auras apparently are the same treatment as everything else, so no. And MAV, apparently I have gone through all those medications as well.

So nope, nope, nope.

There will be some of us that will inevitably come to this point. Not many but some. He said the best treatment for us is chronic pain management or pain clinics. If there are no preventatives to prevent then you have to look at pain control. As well as to do things to cope with the pain we have such as mindful meditation, psychology and exercise. So that is the path I will continue to go though.

He did mention I could take botox again as a slim change of doing something if I wanted to try it again. I am not sure it is worth it, but I will likely give it another go.

The medications managing my mood lately must be working by the way because when a neuro says 'nothing to be done for you' I usually get seriously depressed. I think things like so I am going to suffer like this forever with no relief in sight then? And worse thoughts than that. But I didn't today. I took it in stride. As a fact I have to deal with.

Sunday, November 22, 2015

Motivation? What motivation

Do you ever wonder with chronic pain where your motivation goes? Why accomplishments just seem... meaningless? One does tend to blame the pain itself. Like it sucks the life out of everything but there was a study done that suggests otherwise.

A series of experiments in mice by Malenka and his colleagues, described in a study published Aug. 1 inScience, showed that persistent pain causes changes in a set of nerve cells in a deep-brain structure known to be important in reward-seeking behavior: the pursuit of goals likely to yield pleasurable results. Malenka’s lab has been studying this brain structure, the nucleus accumbens, for two decades.“We showed that those brain changes don’t go away when you transiently relieve the mice’s pain,” Malenka said. The experiments also indicated that the mice’s diminished motivation to perform reward-generating tasks didn’t stem from their pain’s rendering them incapable of experiencing pleasure or from any accompanying physical impairment, he said. Your Medical Guide
 Fields, who did not participate in the Malenka group’s study but wrote an accompanying perspective piece published simultaneously in Science, described the psychological effect of chronic pain as “the clouding of the future. There’s no escape from it. You want it to end, but it doesn’t.” As a result, people become pessimistic and irritable, he said. “People come to expect the next day is going to wind up being painful. It just takes the edge off of life’s little pleasures — and big pleasures, for that matter.”Your Medical Guide
The study was interesting in that they had mice who would nose a spot to get a reward and then they increased the amount of nosing they had to do to get that reward. And the chronic pain mice lost the motivation to do so. Physically they were able to. Their pain was treated. And still they had no motivation to get that treat.

Because with chronic pain effort seems like a momentous amount of energy being lost. And all our energy is on tolerating this pain, combating this fatigue and getting what needs to be done done. We have nothing left for motivation. We really force ourselves to do things. Force and force and force, but the motivation isn't there. We fake motivation.

So that sensation that you have no motivation to get through the day, to attain the goals you need to or even attain the goals that are seriously meaningful to you could have little to do with the pain aspect of the chronic pain... but is part of the persistence of the chronic pain itself. We no longer have the sense of their being a reward for our behavior. We no longer have a sense of pleasure from our accomplishments. It has been dulled.

And I think of this in the sense of discussing self-worth with my psychologist. Yes, there are meaningful things I do. I am aware of this logically. But I do not feel it. I do not feel any sense of 'accomplishment' from it. I have a difficult time just finding the motivation to do those things, or any damn thing to be honest. It is like a fatigue laden blanket of an existence. And when I do things that, yes, are meaningful... there is not real sense that this is something important or special or makes me worthy as a person. And my god, thinking about work is an entirely different issue. Motivation there is energy sapping. Just motivating myself to get up to go to work knowing how painful it will be is a real ordeal. Getting through a day should be an accomplishment but really it just makes me exhausted. And then repeat.

It does take an edge off life's little and big pleasures because they are all tainted by pain and fatigue. It does make a person pessimistic because we are aware there is no end.

Tuesday, November 17, 2015

Need to know? Or not

There seems to be an increasing pressure that somehow, by being sick, we all have an inherent responsibility to educate people about our illnesses and raise awareness whenever and wherever possible. I‘ve been aware of it for some months, but recently, it seems to have resurfaced along with a great deal more discussion in various online groups to which I belong. While there may be many reasons for this, in Australia, a lot of the motivation for increased advocacy and education about illness and disability seems to be happening because, I think, there are far fewer institutionalized awareness programs. The national days/months for various illnesses come out of the U.S., and I’m seeing more people posting and using the colored ribbons that are part of those campaigns. Our own organizations exist as umbrellas for research and different resources pertaining to different diseases and conditions, but not so much for awareness campaigns. (Creaky Joints.)
I liked this blog post because while I love to advocate and talk about my illness on my blog and my Page and when I write articles or do work with Migraine Misfits... the fact is in real life I feel we have the right to disclose as much or as little as we want.

As a very private and reserved person I don't feel like educating everyone I meet about something I consider to be private unless:

a) They want to know. They genuinely want to know something about my specific health condition and then yes, I will give them the details they want. Because people often are uncomfortable around illness and sometimes knowledge makes them more at ease. They can grasp it better.

b) someone says something that is false about my illness specifically to me or about me. Misinformation can lead to some myths and stigmas so I correct that information. Some might be a that a migraine lasts a day, not up to 72 hours. Or that someone can't have a migraine every day, and I will explain chronic migraines. This is my choice though. And it is people who Know already. Generally they are few and far between.

c) I inform my employer because it will affect my work. I know disclosure to an employer is a very difficult topic. In my case I disclose if it will affect my work and I don't when it won't.

However, no, to random strangers I am not getting all up in their business about my illness. It is need to know. And they do not need to know.

Frankly, I don’t feel that my illness is anyone else’s business except my own. To be honest, I find the grind of day to day living with RA quite tedious most of the time. It’s BORING being sick. REALLY boring. It interferes with my life in all sorts of ways, and makes keeping up with the things that really interest me (RA doesn’t – I’ve learned about that because I had no choice!) more challenging than I’d like a lot of the time. If it bores me, it stands to reason that me banging on about it at every opportunity that presents itself could well bore a whole lot of other people too. Why set out to do that?!
 It is true walking around telling everyone with an ear about our illness would get frustrating fast for you and the person themselves. I have learned a long time ago people do not want to hear about this sort of thing.

There are times for revealing. There are times for concealing. You are the one who chooses when it is appropriate to reveal and when it is appropriate to conceal. And then if you want you can get a blog and explain the real existence to those who are interested... sometimes writing it down is a good experience.

Monday, November 16, 2015

My #judgement on myself has to Go

This poster is really the form of negativity my brain can get behind but I am trying to avoid. Yet at the same time chronic illness and chronic pain automatically puts you at a disadvantage in so many ways. I want to say I am still worthwhile and I can contribute in my own ways. Because I can. Still, it is less that I think I should because like people judge me, I judge myself.

I had this psychologist that said something very elitist to me once but I wonder if it is the issue I have. He said intelligent people often have a difficult time coping with the loss of their capacity to have a career. Rather I believe we all do. I believe we all struggle with self-worth after we are unable to work in the field we could before or just struggle to work full-time at all. However, maybe there is something to the fact that I judge myself more for it. I achieved this higher education and for what? Nothing. Except the debt load of course. And I had ambitions but my illness no longer allows ambitions. And I had specific career goals but my illness does not allow those goals.

And we make compromises for our health, which we Should. It is the right thing to do. It is good for us. it reduces stress. it gives us somewhat of a life back instead of exceeding our limits every day and increasing our pain load. And yet these compromises seem like failures for some idiotic reason I cannot comprehend. It is a compromise that had to be made, was grudgingly made, yes, but made for my own wellbeing... and yet I view it as a failure. In myself, not my body. And it diminishes my self-worth.

I must cling to an ideal of 'what I could have been' that I know is unhealthy to do. There is only now. There is only the healthy, productive way to live now that meets our needs and doesn't exceed our limits. The ideal 'if my health were perfect' is this fantasy. And to judge myself based on it all the time is cruel to myself.

I am trying to do my assignment for my psychologist about ways I am worthwhile and able to contribute in other ways. I had 4 in session. But I need more as homework. And I got nothing, man, nothing. My brain goes to the negative like it lives there. Why I have no worth? I can make you a list so fast it would spin your head. But worthwhile and can contribute in other ways? I don't know.

It is damn hard. You try it out. I'm human and I contribute in other ways...
 Here are mine for example:
  • I am a loyal, trustworthy, funny spouse
  • I am an influence and advocate through my blog, migraine board and Pages.
  • my creativity is a passion of my and I contribute books.
  • as a friend I am loyal, supportive, protective and a good listener.

Friday, November 13, 2015

FM and remission in some

I can see this to be true. When we find that path to health often it is lifestyle changes and hard work. Continuously to keep the illness at bay. I just can't say why this works for some and not others.

Fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain condition. Although studies have reported that some patients can become healthy again, little is known about what they tell about their lives after having FMS. In this study, we interviewed eight Norwegian women who had all recovered from FMS about their experiences when ill and subsequently being healthy. Inspired by narrative methods, we then conducted a thematic narrative analysis. The findings indicate that although women reported that life was better than before, they also reported investing considerable effort in remaining healthy. When ill, they struggled to maintain the routines of everyday life. Being healthy again, they put great effort into avoiding illness through diet, exercise, and relaxation. In conclusion, remaining healthy requires ongoing hard work to maintain the body, as well as profound changes in everyday life. At the same time, the narratives show continuity in the informants' self-presentation as hard-working women.

Source: Grape HE, Solbr√¶kke KN, Kirkevold M, Mengshoel AM. Staying healthy from fibromyalgia is ongoing hard work. Qual Health Res. 2015 May; 25(5):679-88. doi: 10.1177/1049732314557333. Epub 2014 Nov 11