I’ve been feeling a fair bit better the last couple of weeks, there’s been a definite change, less pain over-all by far.

I had a follow up with my family Dr. last week and the results from my bloodwork though not entirely normal, didn’t point to anything more than my fibromyalgia. I had some things come in as abnormal, but they were not far from the normal range.  It seems my immune system is a little over-reactive but not enough so to diagnose me with lupus or another autoimmune disorder above and beyond the fibromyalgia.

I still have an appt. for follow up with the rheumatologist in Oct. as well as with the neurologist at the MS clinic.

I also was given a referral for a physiotherapist to help with the exercise. I know I have to keep up with it, but when I was at the worst point of my flare-up, lasting for a couple of months where it was just getting worse and worse, exercise was unbearable. I know that as much as possible I need to push through and cope with the recovery pain I get even from gentle swimming. All the research shows that as painfull as it can be in the moment, that it will decrease over-all pain in the long run compared to people who don’t exercise.

The result is yesterday I was in the pool again after my long break from it. I managed half an hour of very leisurely laps, I had to break it down into two 15 minute sets with a break of 10 minutes inbetween. The worst part is trying to get out of the pool, my muscles are not happy to encounter gravity again when climbing the pool ladder. Today I’m really feeling it, I’m going to try to go every other day for a while, and not yet daily. I have a lot of recovery pain today, the muscles react as if I’d been doing 2 hours of intense martial arts and not 30 minutes of leisurely swimming. Unfortunately exaggerated muscle recovery pain is normal for many people with fibromyalgia and just something I will need to cope with.

I’m hoping the phsyiotherapist has experience with fibromyalgia and can help me work through some of my issues with pain and weakness in exercise.

Now that I have less pain, I’m not fighting to try to get to sleep at night, and I’m not waking up with pain throughout the night, or unable to get back to sleep again because of pain. Getting a regular nights sleep is such a phenomenal feeling when you’ve been without it for a while. I’ve also found my craving for sugar and caffiene is a lot less.

I had put my weight loss completely on the back burner while dealing with the increasing pain and symptoms I had throughout the summer. I had gotten down to around 180, but put 10lbs back on and have been hovering around 190. Now that I’m not so consumed with pain and pain management, I feel like I’m ready and able to focus again more on diet as well as exercise and go back to my previous goal and continue to bring my weight down.

I’ve got my fitday program back up and running, it’s a phenomenally helpful little software program that is an extension of what is offered at fitday I find keeping a record of my diet and exercise helps keep me on track.

Hopefully this slight remission will remain, or even better, hopefully things will continue to improve. It’s nice not to have pain screaming at me all the time, I still have constant pain but nothing compared to even a few weeks ago.

I’ve been writing a lot more too, here, and elsewhere, which is nice, but my wrists and hands are screaming at me for it now, so it’s time for bed.

Are you a kinky person? are you on Fetlife? if so, find me there too, my nick is Katt.

Thanks for those of you sending me ‘spoons’ they must be helping.

When I did my first work as a psychotherapist it was in a practicum setting where I was working as a counselor for a ‘women and violence’ program. Essentially dealing with current and/or past survivors of abuse. One of my focused areas of study was on dealing with and healing from abusive relationships.

Abusive behavior occurs not only in close interpersonal relationships but also in workplaces, schools, and other communities.

Verbal abuse is one of the more common forms of abuse that people face.

Verbal abuse can at times be more damaging than physical abuse, with longer lasting results on the psyches of those involved.

Verbal abuse is often trivialized in society in terms of how harmful it can be to a person’s mental and emotional health over a period of time. People who have experienced verbal abuse often feel deeply hurt, frightened, angered, and at the same time may have self doubt or guilt over their inner emotional reaction to the verbal abuse. They have internalized the idea that something so ‘trivial’ as words shouldn’t hurt them so much. The reality is it is so hurtful because it’s not so trivial.

If you experience hurt and upset over the words of another directed at yourself and/or people you care about, your feelings are valid, and important.

Verbal abuse is something we are all likely to experience at some time or another to some degree or another. Most of us have experienced hurt at the words of another.

There is a difference between verbal abuse and conflict. In conflict, each person wants something different, and in order to resolve the conflict, the people involved in the conflict discuss their wants, needs and reasons while seeking a solution.

Conflict tends to be solution focused, while verbal abuse tends to be about a means to an ends in itself, that of power and control.

Sometimes issues of conflict will devolve into situations of verbal abuse. Verbally abusive situations are not necessarily about one abuser, and one victim. There may be more than two parties involved, and one, two or all involved may be verbally abusive.

In general, laying ‘blame’ is not productive, and can be a form of verbal abuse itself. Focus should be on ending abusive behavior if one is engaging in it, or removing oneself from abusive behavior if one is the victim of it.

Verbal abuse is all about power and control. One person is seeking power and control over another or others, and gains that power by manipulating and controlling communication. Verbal abuse by its very nature, undermines the feelings, beliefs, perceptions and behavior of the victim or victims involved. Verbal abuse is damaging not only to those it is directed towards, but to those engaging in the abusive behaviors, and those not directly involved but witness to the abuse. Ongoing abuse is more damaging than isolated incidences of abuse.

Becoming aware of ongoing abuse issues in your life and taking positive measures to protect yourselves and others is an important step to empowering yourself in living a healthy life.

What is verbal abuse?

If you have been called stupid, a bitch, or any other put-down, you have been verbally abused.

Name calling is the most obvious form of verbal abuse and is not difficult for most of us to recognize, but verbal abuse takes many, more subtle forms as well.

Verbal abuse may be ‘disguised’ as jokes, or a form of humor, teasing, or sarcasm. Teasing can be a strong tactic of control. Even in it’s most innocent application, teasing is designed to trigger shame, to cause others to feel unsure or foolish, especially when the teaser asks “What’s the matter? Can’t you take a joke?”

Verbal abuse may take the form of ‘Withholding’ Essentially refusing to listen or to communicate in a positive fashion.

Verbal abuse may take the form of ‘Countering’ Not allowing you to have a different opinion or point of view. Invalidating your opinion or point of view, refusing to acknowledge your point of view or definitions and constantly countering them with their own.

Verbal abuse may take the form of ‘Discounting’ Treating your experiences and feelings as if they are worthless or meaningless.

Verbal abuse may take the form of ‘Blocking/Diverting’ These are forms of controlling communication by establishing what can/cannot be discussed and/or switching the topic.

Verbal abuse may take the form of ‘Accusing and Blaming’  Accusing you and/or others of wrongdoing or blaming you for his/her words, feelings or behaviors.

Verbal abuse may take the form of ‘Judging and Criticizing’ Judging you/others and then expressing that judgment in a critical way to you or others.

Verbal abuse may take the form of ‘Trivializing’ Indicating, directly or indirectly, that what you or others have done or said is not important.

Verbal abuse may take the form of ‘Undermining/Sabotaging’ Not only withholding emotional support from others, but making comments that are aimed at undermining self confidence, or implying that others are inadequate or lesser than in some way.

Verbal abuse may take the form of ‘Forgetting/Denial’
Declaring what occurred didn’t occur; denying your and others reality.

Verbal abuse may take the form of ‘Ordering’ Telling others what to do, and giving orders instead of asking respectfully for what he/she/others want. Denying the equality of others.

Verbal abuse may take the form of ‘Abusive Anger’  Irritable outbursts, sneering, arguing, temper tantrums, shouting, yelling, raging, explosiveness or sarcasm directed at you or others.

Of course we have all experienced these behaviors, and we all at some time or another have acted in such a way that falls under the above definitions. That does not make all of us verbal abusers. The important thing in identifying someone who is verbally abusive is a identifying that they use multiple tactics of verbally abusive controlling behavior, and they have a pattern of doing so consistently and repeatedly over time. Abuse often occurs in cycles.

You cannot resolve conflicts with someone who is abusive and whose agenda is not conflict resolution, but power and control.

The appropriate response to an abuser, is generally to disengage. To not accept abusive behavior from them. You may or may not want to call them on the behavior first. Calling someone on their abusive behavior will not work if they are in denial over their own behavior. It’s only valuable if there is some indication of recognition, responsibilty and willingness to change on the part of the abuser. Remove yourself from the line of fire.

If you recognize these behaviors in yourself or others. If you believe you or others are acting from a place of trying to exact power or control, ‘win’, rather than solve conflict, ask yourself what the results of being the perpetrator or victim of the verbal abuse is. Usually it’s an endless cycle of pain and nonsense. Are you continuing to engage in the cycle of abuse with others, as a victim, as a perpetrator or as both?

Recognize your behavior, accept and forgive yourself, move on and do something different, more productive, positive, and towards healing.

My personal advice. Just stop. Do something else. ‘Playing’ with a verbally abusive person is like playing with fire, the result is you get burned. Anything you do to try to quench the flame is going to be seen as a play at power and control and will just cause more heat and a brighter flame. It doesn’t matter if you feel you are coming from a positive place or not, sticking your hand over a flame will result in injury regardless of your positive attitude.

If you’re worried they or others will see your disengaging as a ‘win’ for them, or that they have gotten the upper hand. They’ve sucked you into their game and mindset of power and control, let it go, let them have it. It’s a fabrication. Real power and control in life is not about abuse, or winning in verbally abusive battles. The people that matter in life, and your own psyche, will recognize that the healthy and strong thing to do, is not engage in the abusive behavior, as a perpetrator, or as a victim.

I have a background in psychology and have always had an interest in human nature, in personality, and growth and healing. In happiness, and in love. Why? I think being happy, and living ‘in love’ is the most important thing there is. It’s the most important thing in my life, to be happy and want those I love to be happy.

I often wonder how to deal with negativity in my life, that which springs from within and without. Over the years I’ve learned some things, developed some beliefs around personality, happiness, negativity, positivity, choices, and empowerment. Some of the things I’ve learned through formal study, but mostly, from practical application.

Here are some of my thoughts on the matter..

Being actively negative begets negativity.

Not complex, but often very true. If someone has a negative view of the world and tends to be a negative person, suffers from mistrust, dishonesty, disloyalty, jealousy, envy, anger, temper, etc, they will tend to attract other people with similar or complimentary issues. Also, the lens through which they view the world is one of ‘negativity’, distorted that everywhere they look, what is seen is a projection of their own negative qualities.

In order to change, people coming from a world view and personality that is negative, have to first realize that a big part of this is their own perspective and view of the world that is creating the negativity in their lives. This doesn’t often happen, as there is frequently a large proponent of laying ‘blame’ elsewhere, and/or such a cynical world view as to believe that their negative view of the world is true and valid, and not distorted at all.

In therapy, if someone is open to exploring that such negativity is indeed largely internal, about world view, and something changeable, growth and healing does become possible. Usually self-reflection is encouraged. It is amazing to see that often if people list the top negative qualities they commonly encounter in the people around them, and are honest with themselves, they will see negative qualities they themselves possess. These distorted world views can be corrected. Jealous people can learn to foster an attitude of abundance, and learn to empathize and feel genuinely good for the other peoples good fortune. These positive feelings can be used as motivations to improving ones own life. Disloyal people are encouraged to try standing up for others, once loyalty to someone or something outside of self is learned, they become closer to having loyalty over disloyalty be their default response. Dishonest people are encouraged towards honesty, through the knowledge that lies invariably lead to more lies and more dishonesty, and eventually trouble. Also, often people can tell when someone lies or is dishonest, often intuitively and will distrust dishonest people, though they may not voice their distrust, it is there.

Basically, people are encourage to discover their negative issues, challenge them, and do the opposite, and foster positive change. Difficult, but not impossible. Practice is important.. it takes more than just an attitude adjustment, it takes changing actions which in turn changes attitude.

Becoming a better person with better values usually results in more positives in life and the lives of those around you. Trust, empathy, honesty, etc, fosters love and friendship. Deepens the love and respect in relationships. I don’t know which is the better benefit, that you learn to love people more when you let go of negativity, or that they love you more.

When people change the psychological view through which they percieve the world. Focus on the positives and release the negatives, their experience of the world changes. People become able to see how positive the people in their life really are. The beauty, love, and positive in their homes, relationships, communities, grows and is encouraged.

Another element to negativity in life, is that being passive and not assertive in the face of negativity allows negativity to flourish.

There are people that allow others to take advantage of them, manipulate, bully or abuse them. If you are unable to actively resist and say no to people, then there are negative people who will take advantage of that. The more you allow it, the more it escalates. In order to evade negativity from being a passive participant is to become assertive and not allow it.

Mistrusting intuition can allow negativity in the back door.

Sometimes, despite logic, your ‘gut’ tells you something about someone. Listening to one’s own intuition is a big step in avoiding negatives. However, if you have looked honestly at yourself and are coming from a strong place of negativity yourself, you may be sensing a reflection of self.  In general though, usually your intuition is right, trust yourself. If something or someone feels ‘negative’, you’re probably right on the money.

Negative people in your life.

Sometimes someone in your life, friend, partner, family member, may be influencing you negatively. Sometimes we can have a generally positive personality and outlook on life and mostly positive interpersonal relationships and experiences, but find ourselves enmeshed with one or two abusive, manipulative, degrading or otherwise negative people. If this is the case the most effective solution is to no longer interact with them. We can change ourselves, and our own negative world views, but we cannot change others. We can choose who we allow into our lives and to influence us. If you do have someone in your life in this role that you feel for whatever reason you cannot ‘cut out’ of your life, and choose to continue to interact with someone that is abusive, manipulative, degrading, or otherwise negative, then you need to always be aware of this negative influence. Do not let them take over your life or influence your thoughts and decisions. Don’t let them infect your own world view with their negativity. Find positive people to interact with. Learn to tune out their negativity and not let it affect you. Create space and spaces in your life where you do not tolerate negativity. You do not have to ‘consume’ negative material other people put out all the time, and if you choose to do so, deliberately recognizing it for what it is, and keeping positive through it is vital. You have control over how you frame it. The lens through which you see it.

Peoples thoughts, attitudes and behaviours are typically influenced by the people they spend the most time with.

The company people keep often reflects and influences our own attitudes and beliefs. Increasing positive, happy, uplifting people in our lives improves the quality of our lives, just as fostering positive qualities in ourselves improves the qualities of our interpersonal relationships.

Foster positive change in yourself. Surround yourself with positive people. Limit negative influences in your life. When confronted with negatives, be aware of them, and maintain your ‘positive’ self regardless.

To sum it up.

Live in Love.
It’s a choice, you have it.

I don’t feel like my brain is up to complex tricks like sentence structure, paragraphs, cohesive writing. But I have a lot of things on my mind.

Wolfe’s grandmother passed away last week, the service was today, religious, solemn, smiles, family, tears, wisdom, and nothing like the cycle of life and death to put things in perspective. I enjoyed the life and innocence of loud energy filled interuptive toddlers.

I had a lot of pain during the service, too much standing and sitting, my body prefers reclining, my hands decided to swell and turn purple. Wolfe was comparing their colour to the leather covers of the bibles in the church.

I have a new laptop. We can’t really afford it. Unfortunately that didn’t effect the fact that I accidentally poured kool aid on the old laptop.

None of the keys on my keypad are where they’re supposed to be, unfortunately, they’re not responsive to any suggestions I’ve made for them to configure to where my fingers expect them to be.

The service was today, I had two hours sleep last night… it was a heavy pain night. In our hurry this morning, I forgot to replace the doggy gate that protects the hall closet from illegal canine entry. I came home to find two of my favorite pairs of shoes where now deluxe puppy toys.  It didn’t bother me in the slightest. They’re in the trash… but you know what? they’re just shoes.

Buying, owning and wearing shoes makes me happy, apparently the destruction and loss of shoes is no biggy.

I had more blonde streaks put in my hair the other day. The blonde reminds me of being younger, makes me feel older, and reminiscent, I like it, and I don’t. I have hair conflict, probably why I shave it off regularly. Not sure if I’ll ever shave it off again.

Wolfe painted our front deck, twice, the hardware store mixed the colour wrong initially, now we love it. Having a home and doing little things to it feels lovely.

Last night I had weird bladder pain, it hurt to move, I had to get help to get to and from the bathroom, It’s scary when things inside you hurt. You don’t know why, or whether damage is happening to you or not. There’s nothing you can do about it. I have a lot of things like that in my life right now.

There are a lot of angry, hurt, and mean people out there. I wish them peace and happiness. When I read things written in conflicts between people I know, even though I’m not very close to them, my heart races, the adrenaline pounds, flight or fight. I don’t like it, I don’t like the drama… I get into ‘fix it’ mode, wanting to make it better. I can’t, and I know it, I take deep breaths and tell myself to let it go, accept people for who they are. Love people for being people, and remember most people lashing out are people with pain or private burdens. Compassion. Not just for them, but for myself. I can’t heal the world, and I’m not sure why a big chunk of my brain is sure it’s my job.

If I find myself reading too much negative stuff, I deliberately go out and look for motivational quotes, positive thoughts, words of wisdom, to try and balance what I’m feeding my head, and remind me of the phenomenal beauty, intelligence, wisdom and happiness people can encompass.

lolcats works wonders too.

As does playing lots of WoW. WoW is my most effect pain management strategy, I distract the hell out of my brain so it doesn’t keep screaming at me about what’s happening in my body.

Most of the time I don’t play very well… my motor skills suck and I only use the mouse to play, less pain in my hands that way.

It’s our life, we can choose what we focus on, and through which lens of personal attitude we view it.

I can’t control life, death, illness, much of my pain, accidents to laptops, destruction of fine footwear by dogs, or how others treat one another. I can control how I choose to percieve it all.  How I interact with it all.  Right now I have a lot of choice around my feelings and attitudes. That is something to truly be grateful for. When I was severely depressed and hadn’t found medication to balance out that biochemical fog… I didn’t have the option to ‘choose’ happiness, it was the worst feeling in the world.  Right now I have not only the ability to cope, but to frame how I see the world as beautiful and positive. I will never ever take that forgranted again.

If you have the ability to choose happiness, do it. If you don’t, I hope you are as lucky as I was, and have someone in your corner fighting for you to regain it.

It’s normal to hurt, to worry, to be sick, to die, to laugh, to cry, to love, to fear, to need, to fail, to learn, to hide, to run, to give, to want more, to want less, to be, whatever you are. You’re normal. You’re human. We’re human, we all have that in common. All of that, and more.

I’ve been reading a lot on the forums in Fetlife lately, and it’s been interesting reading. Lots of excellent threads, thoughts, ideas. Things that take me back to philosophy and psychology classes many years ago some of them. Or many late night conversations with friends over the years.

In the past all the ideas swirling around in my head from reading would inspire me to write my own thoughts, contribute to those threads, debate at times.  I seem to be content as of late to be primarily a consumer, a listener, and not to contribute. For one, most everything I’ve said before, somewhere, sometime.

In the past I would often write as part of the process of developing my thoughts on topics, that impetus isn’t there, I pretty much know what I think about a lot of these topics.

I sometimes wonder at the motivations behind why some people write what they do. Especially when they are not bringing anything new or productive to a conversation. Sometimes writing seems to be specifically about supporting friends, or the ideas of others. Sometimes writing seems to be specifically about trying to discredit others in some way. It seems there are a lot of emotionally motivated types of responses, people writing for vengeance, people writing to try to appear different ways to different people. Perhaps a satisfaction in writing something clever, or something witty, something deep, or something disparaging. Thankfully there seem to be a lot of people writing simply because they have something good to say as well. I’ve read a lot that I’ve appreciated, that seems to be written from someones heart and soul because it’s important to them, and not about an outside agenda. In reality I can only guess at motivation, and I think with my background in human psychology, I’m a relatively good guesser. I still don’t assume my guesses are correct, I leave them as open ended pondering in my head. The only person who really knows their motivations are the authors themselves, well, one hopes… some may lack the self insight too I suppose.

I think in part I’ve stopped writing as much because I’d become frustrated with assumptions.  I’ve had people assume some nasty things about me and my motivations behind some of my past words. I haven’t stopped writing to ‘save myself’ from being targeted from misassumptions, I’ve just wondered sometimes what the point of sharing thoughts is, when it doesn’t matter your intended purposes in writing, what people are hearing when they listen to your words is different. I write to express things that are important and central to me, if it’s not being heard, I might as well just keep them to my thoughts.

It makes me think about some literature classes where we would dissect bodies of writing, poems, stories, novels, what have you.  So many intellectual insights into what all the meanings in all the words are… the work takes on a life of it’s own. The words become an entity seperate from the author. It stops mattering what the author says they meant, or were writing about… the readers have become the true authors, the intellectuals consuming the work have added layers and layers.  Something bigger is created, yes, but something simple and beautiful is also lost. Lost in translation.

Sometimes in school this could work to your advantage, if percieved as highly intellectual, essay questions written in exams where usually given the ‘benefit of the doubt’ and the professor grading you would assume your answers contained the right answers in them. Write something vague enough and clever enough and obscure enough, and voila… A+. Funny thing is, I’ve never been interested in grades, or even looking clever. Whenever life would start to pull me into the limelight. I’d deliberately take a step or two back into obscurity.

I’ve never liked being the center, I don’t want to be the star, the super author, the ‘winner’.  This is sometimes a hazard of being creative. Liking to create things, creation draws attention, and often admiration. Maybe that’s why I so often switch creative genres.  Dabbling in different things, never going too far in one field. A lot of people would view some of my actions in life as fear of success. I disagree, it’s not fear motivating me for one, and for two, I don’t think I have the same definition of ‘success’ as many people do. I don’t need to have ‘prestige’ in order to feel successful in life.  I don’t need awards, or certificates, television shows, money, etc, I don’t think being successful comes from ‘things’ at all, or even from ‘accomplishments’. I think being successful comes from being happy, from deep contentment, from acceptance, from having inner serenity and compassion. It’s a state of mind, not a state of status. Keeping separate from other peoples constructions of pedestals tends to keep me focused on what really matters to me.

I’m not successful because I have a number of degrees including an MA in psychology. I’m not unsuccessful because I’m on disability due to health issues. I’m not successful because I own my own home and am married. I’m not unsuccessful because I don’t have kids and a white picket fence. I’m not successful because I’ve been on television or have x amount of internet recognition. I’m not unsuccessful because I’m not in more prominant media.

I am successful, because I have succeeded in knowing who I am, accepting who I am, loving who I am, and being who I am, true to myself. That I’m motivated by internal personal goals, and not by some societal expectations of what it means to be successful. That I do what I want, when I want, based on self knowledge, self interest, and acceptance of my goals, desires and my limitations, the whole package. I’m successful because I care about me, being true to myself, and about others, and doing my best to be true to others, and supporting and accepting their truths and limitations as well.  We are all imperfectly perfect, and we are all being ourselves, very successfully.

I guess my frustrations are with assumptions, constructions, that others interpret around my actions and words and works, creative and otherwise. I don’t want to be successful on other peoples terms. I don’t write things, or do things, to be popular or unpopular. I think a lot of times, people have a very hard time listening to me when I speak my truths about my motivations in life. My motivations in my words and actions. It’s simple, I want to be true to myself and others. I want happiness, love and compassion and to do what is meaningful to me and my happiness. If it’s not working for me, if what I write is misunderstood and consistently taken to mean things it does not.  I stop writing in those venues.  So these days, I write very little in terms of public words.  Someone else will come along and say it just as well if not better than I eventually anyways. It doesn’t have to be me.  What’s important is the circulation of positive ideas… not that it’s me circulating them.

There seems to be a lot of people on fetlife circulating positive ideas. I’ve been very happy to just listen.

Since I’ve written anything here. Physical and mental resources are scarce these days, I’ve been allocating a lot of them to play World of Warcraft… why all the WOW? It’s been the best pain management I’ve been able to find so far. Keeps me distracted, that’s the ticket these days to sanity, is keep the brain as occupied as it can be so it doesn’t dwell on unpleasantries… like horrible pain, distressing other symptoms, and pondering the meaning behind them.

Despite my best efforts to live in WOW, I still end up with a good portion of my time focused on horrible pain, distressing other symptoms, and pondering the meaning behind them.

It seems that whatever I have, is progressively getting worse. Usually in fibro, this doesn’t happen, things more often go up and down, there isn’t a steady slide into decline. It does happen, but usually it doesn’t involve a lot of the neurological type symptoms I’ve started experiencing. Those symptoms, are getting worse, and rather quickly for comfort.

A long with the pervasive pain and discomfort that is a constant nagging, and likes to throw me new pain experiences regularly on top of the regular daily grinds of pain. I have worsening weakness.  Weakness that means sometimes I have to struggle to lift a full glass of juice to my lips in the morning. Weakness that means sometimes I get stuck with not enough strength to stand easily, struggling to get from sitting to upright. Fun when home alone and on the toilet. Sometimes I’ll get up from the couch and foray into the kitchen for a snack, and my legs feel like they’ve run a marathon, that shakey trembly electrical feeling, like your real legs have been replaced with elastic bands and any moment you’re going to come crashing down. It’s not a feeling I’m fond of. I find the easiest way to avoid it, is not to leave the couch. Clever hmmm?

Exercise is supposed to help fibromyalgia, but there is no way I can walk, or swim, these days, walking the short bits to cars and from cars to dr.’s offices, is challenging enough.

My reflexes are affected too, I fumble more, more typos, drop things, fine motor skills are affected.

My eye sensitivites are worsening, and I have nerve related pain, in my ear/jaw, shooting down a limb…

I also find myself needing to pee more, and the complete and utter state of extreme constipation is only alterable by me drinking a heaping dose of peglyte daily, this allows me to move my bowels, only if everything is totally liquid. It’s been many many months, since I was able to have a non-liquid movement. I know, unpleasant. Trust me, not as unpleasant as being the person dependent on drinking a big cold discusting glass of peglyte and then being a slave to the toilet for a few hours.

It’s hard to do much of anything.

I’m on a new medication trial. The Lyrica did nothing for me. So I’m currently working my way up on increasing dosages of gabapentin to see if I get any therapeutic effect from it. So far all I get is massively hungry. I’ve gained 8 lbs in a couple of weeks of this medication.

The symptoms of weakness, and some of the other symptoms I have, aren’t typical of fibromyalgia. They are typical of MS.

I had an appt. to see my rheumatologist in sept. My family Dr. felt I should be seen earlier, and in my case should not wait, and shared his feelings with my rheumatologist. So I got a call and they’ve made a special appt for me next thursday, the rheumatologist is going to come in an hour or so early, 7:30, to see me. Sometimes it doesn’t feel nice to feel ‘special’. So I’ll be getting up around 5:30 to make it into Vancouver for the appt. and be clean and functional to boot. I’m going to ask about MS, and testing for MS, I’m not sure whether he’ll be able to do it, or whether I’ll have to be referred to a neurologist.

I also had a full body nuclear medicine bone scan a couple of weeks ago, and a copy was sent to him and my family Dr. so I should have some answers back around whether there is anything degenerative going on with my bones.

I thought the worrying I had fibro stage was scary, now that I’m worrying I may have MS, and/or AS, issues that are more degenerative in nature.. the scary factor has gone up again.

It reminds me of the weight gain over the course of much of my adult life… 18, gee, I’m 145lbs, I’m so fat, 20, gee I’m a 165lbs I would kill to be the skinny 145lbs again, 23, gee I’m 175lbs.. it would be so nice to be that slim 165 again.

I keep thinking I’m really sick, or this is the worse pain of my life… then wham, we turn it up a notch. the giant fibroids and the hysterectomy, those were the good old days, hell, I’ll settle for the first diagnosis of Reiter’s syndrome, a little temporary reactive arthritis, no? it’s not? it’s fibro?… okay, I’ll try and live with that. Wait? there’s more? can’t explain all of this away with the fibro.. may have additional issues? Honestly, a little severe fibro is sounding manageable these days.

Pain disorder’s suck, they’re not as fun as they sound… and wait, they don’t sound fun! I always thought, pain? no problem… take a pain pill, the right pills will take away the pain. Reality check… doesn’t always work that way, much of the worse pains we are capable of feeling, they don’t have effective medications for.

I’m kind of relieved in a way, well, torn, can’t decide if I’m happy opiates don’t work on my pain, or unhappy. It would be great to be pain free, and sometimes I think no cost is too high for that, on the other hand I don’t have to worry about side effects or addiction issues around taking narcotics.

So stuck on my couch, not wanting to get up on my feet, because I won’t fall down when I’m already laying down. Distracting myself by gaming in a world where the pain is all pretend, and if you die, you can just ressurect and keep on going, nothing can really ‘get’ you. It’s a fun place to be, and it keeps my mind from darker places.

So if I’m not around, you’ll know why, and sometimes I don’t respond, because my mind’s just not up to translating what’s going on in my head into words. Or my hands are sore, and I don’t want to type. Or I just don’t have anything ‘good’ to say, and so I don’t want to say anything at all. People write and ask how you are… and you think, do they really want to know? or do they just want to hear I’m fine.

I’m not fine, and the fine details suck, and there are a lot of fine details, I just share a small sample with the world. The amount of stuff not working with my body, all the types of pain and discomfort, are so many that it actually becomes both horribly upsetting and somehow completely comical to me, and not something I really want to dwell on. I can’t imagine anyone else really wanting to dwell on it either. Doesn’t leave me much left to talk about.  Not much else to my life right now.

Just trying to keep it all together.

Live in love

and cherish what you have.

I can’t decide if it’s a little or a lot, new that is. It’s a lot but it seems like it’s a little.. or maybe it’s just a little and it seems like it’s a lot?… Actually, it feels like both, or maybe neither.

Confused? Yes. My head spins with it, chronic pain seriously fucks with your head. I stutter, I can’t remember words, I can’t remember what I was talking about, I can’t think straight, they call it ‘fog’, ‘fibro fog’. They should call it ‘feeling like you’ve had half your brain smashed in by a brick’… that’s too long, maybe ‘fibro-lobotomized’ that still sounds too friendly… It all sounds too friendly.

You always think when you’re sitting in a first world country, watching what is happening to other people in a third world country, perhaps on an interesting documentary from your cozy living room, that you have a pretty good grasp of the situation. You know you can’t relate, what it’s like for them, but you can learn from the nice documentaries and have some empathy, and feel like you know theoretically what is going on.  Chronic pain used to be something I thought I had a relative grasp on theoretically.  When you’re not sitting comfortable on the outside, looking in, but sitting on the inside, looking out, it looks completely and entirely different.

You know, I used to just write, not edit, not check for cohesion, etc, and just write one long stream of consciousness post and hit ‘publish’. Now I have to go back, read, and re-write, re-write sentences that somehow lost words I thought I typed.

I have holes in my head. Pain is a gun that has shot holes in my head… fibro-lobotomized, shot gun style, lots of little pellets, where memories, mostly short term, ideas, hours of days, words, thoughts, functioning, just slide on out. Lost.  When my parents were here I think they thought I was ‘confused’ because of medication I was on. I had to explain that the medication I am on doesn’t have those kinds of side effects.  I’m not on anything remotely narcotic or mind altering.  I used to think pain killers, killed pain, and if you were a person with chronic pain, you just had to cope by dealing with the fact you might have to be a pill junkie for the rest of your life.

I fucking wish. I had no idea that for lots of chronic pain conditions, there isn’t medication that works.  It doesn’t work.

I explained to my parents, that this was part of the package deal I got with my fibro, the holes in my head, inability to think, losing chunks of things I would like to keep in there, don’t know which is more frustrating the actual physical pain part of the pain, or all the other stuff, the emotional pain part of losing control over not just your body, but your mind too.

So, enough of the emotional venting, need to vent, that’s one of the biggest reasons I blog. The other is it’s a place to record things. Which I may have to actually start reading myself in order to know what’s happened.

We’re not moving to the Island. Wolfe loves his job here. I love Wolfe, and the financial stability of his work situation combined with the lure of future excellent medical benefits… too tempting. I’m a little dissapointed, but not much, and also largely relieved too, because moving is a huge ordeal/stress.

I think part of my wanting to move so badly was a metaphor for trying to run away from my pain. Honestly Leila… no matter where you go, it’s going to come with you.

When I was very depressed years ago, and suicidal, I was always trying to ‘run’ away from the pain. Physically get up and go somewhere, anywhere, and maybe ‘there’ it would be better.

I’m out of metaphors… which I think is a metaphor for something, we’re back to the beginning, with truths in contradicting negatives.

It’s comforting, that the parts of my brain that are still there, seem to have some higher functioning.

Laundry list of what else is new…

Two puppies have gone to their forever homes, four puppies remain, two of which we’re keeping, simple math, I miss the puppies we have here more than the ones we don’t.  That’s another metaphor, but it’s too big for my brain.

There’s other new things, but I’ve forgotten them for now. It’s late, and it’s time I martyred myself and laid my ‘holy’ head down on a pillow.

Just to remind myself… “I cried because I had no shoes, ’till I met a man who had no feet.”

People have had it much worse than I, and they still get by. They survive, I guess the question is, can I.

You know how when you get statistics from STI resources that give a time frame a virus can live outside the body, how do they determine the upper end? The maximum amount of time? How does the laboratory study compare to real life?

First off, the laboratory determined lifespan is going to be the real and genuine ultimate maximum. Why? because in these studies they are trying to find the ultimate maximum survival. They are doing their damnedest to keep the virus alive, and they are specialists in these viruses. They use super concentrated virus, much higher than found in ‘natural’ conditions and they use methods to provide the virus with the ultimate beneficial environment to keep it alive for as long as they possibly can. That is how they achieve that maximum environmental life span. Scientists specializing in the virus, using a super version of the virus, and using all their knowledge and equipment to try to keep the virus alive as long as they possibly can outside the body. They want to provide us with the best and most accurate data possible. There is no way, doing the best you can outside the laboratory to come anywhere close to creating an ideal environment to support that virus, and you’re not dealing with a specialized concentrated viral sample.

Here’s one quote from a study on HIV “In order to obtain data on the survival of HIV, laboratory studies have required the use of artificially high concentrations of laboratory-grown virus. Although these unnatural concentrations of HIV can be kept alive under precisely controlled and limited laboratory conditions”.

This quote is typical of these studies to achieve the data to give us statistics on STI’s.

I’ve written an article before that gives the maximum lifespans of various viruses outside the human body. When the studies say that’s the upper limit, then that’s the upper limit. They’ve gone through rigorous varied testing to create super strains of the virus and then do everything in their power to keep it alive outside the body. No environment you create is going to be better able to support the life of that virus outside the body. The data is there, and it’s accurate.

My bafflement is why people who engage in behaviors that serve a potential risk to come in contact with blood and body fluid STI’s don’t know this information?! It’s readily available. It’s available online, it’s available through medical practitioners. Or they are aware of the information but somehow have decided they know better than the scientists and health practitioners that specialize in the subject area.

I mean, it’s not just about STI’s either, cold viruses, flu viruses… if you want to know how to protect yourself from getting a bug, Millions of dollars have gone into researching just that, the health information is there for the taking. Empower yourself.

I see a lot of Dr.’s these days, outside of my family doctor I have my psychiatrist who I see for medication prescription changes for my major depression, I don’t see him often because I’m not doing therapy with him, he just manages my meds.  I have the rheumatologist who diagnosed me with Fibro +, the plus part is on top of having symptoms that would diagnose me with Fibro which he thought I had, he also said I had additional symptoms not typically seen in Fibro that may indicate additional illness.  Specifically I had joint pain and inflammation not usually associated with Fibro.  I’ve been through a few other specialists as well. I also have my gastrointerologist who I’ve seen a few times now, and who will be doing a colonoscopy on me in June. I see a dentist once a year. I see a sexual health worker on average once a year, sometimes more, sometimes less, depending what’s happening in my relationships sex and kink wise.  Basically before I engage in any intimate relationship I do the ‘exchange STI paperwork thing’, this is well after the STI talk. I don’t do fluid bonding till after 6 months into a relationship where there’s an agreement of ‘exclusivity/monogomy’ and another round of testing and paperwork sharing. In general, on the scope of what most adults do in regards to safer sex, most people put me in the ‘over-cautious’ category. Sometimes they think I’m paranoidly anal about my safer sex practices.  For instance, I don’t casually kiss people, I used to make out and swap spit with less discretion in my teens and into my twenties, but I’ve become more and more cautious over the years. Other people consider the risks of ‘french’ kissing, and various forms of ‘oral sex’ to be within their personal safer sex guidelines even without barriers. I think everyone is entitled to make the decisions that work for them.

At any rate, I take my health seriously, sexual health and otherwise. If I ever have any health concerns, I usually a) google and research on the internet like mad, and b) make an appointment with my doctor or specialist depending on the issue, so that I can discuss my concern with them, and compare what I’ve found out online to what it is they suggest/say.

Perhaps you do this too. Oddly enough, or maybe it isn’t odd, and I’m the odd one. I have been encountering so many people with sexual health questions lately, who don’t get answers to their questions by seeing sexual health specialists.  I can see how for some people, this would be a more ‘sensitive’ area that they would be less comfortable discussing with a Doctor or nurse than a non-sexual health issue. However many of the people I see not doing this, are generally people I would think would be comfortable talking with a health care worker about sexual health issues.  I’ve been witnessing people make all kinds of assumptions and guesses about things, and blatantly wrong ones at that, when there actually is real answers to their questions providable by real experts in that health field.

Sexual health workers, they’re your friends, they have great information, and if you make an appt. and go in to talk to them, they’ll usually happily not only answer a gazillion questions, but gift you with some free condoms and lube too.  My local clinic was thrilled to see me when I came to talk to them about some concerns I had around my adult dungeon parties, they gave me a big bag of flavored condoms and lube, and some pamphlets and posters for the dungeon to boot.

Health care, it’s a good thing.

You know, life has been throwing me some serious curve balls over the last few years. I just get over the hysterectomy due to 16 rapid growing fibroid tumors in my uterus. To having wide spread pain, and a whole evil check list of symptoms and getting a diagnosis of fibromyalgia. Fibromyalgia that seems to continually get worse, and more challenging to deal with. Health wise, I’ve been down this twisty turny dark scary path. Not knowing where I am, what’s going on, and where it’s going.

Just when I thought things couldn’t get any spookier than they are, last night I discovered my tail bone wasn’t where it was supposed to be.

This is my coccyx we’re talking about, not some soft tissue item that may shift a little, shouldn’t my spine pretty much be set in place? Now of course it didn’t just jump to it’s new location overnight. It’s probably been a gradual change I didn’t notice. Hindsight always brings some insight. Over the months I’ve had a harder and harder time sitting comfortably upright. I get pain in my tail bone from sitting ‘normally’, well, I just chalked it up to Fibro making me more sensitive, after all, everything hurts, why should my tail bone be exempt.

Last night in the bath, I was washing my backside.. like normal, and realized my tail bone was really prominent and low and protruding. And why I didn’t notice this the bath before, or the bath before that, I don’t know. I do know, that’s the same way I discovered the large grapefruit sized lumps growing in my uterus a couple of years ago, laying in the bath, and wait.. somethings not right. Then you get this weird shift of insight and you wonder how you’ve been missing it up till now. I wasn’t happy with that ‘ah-ha’ moment with the fibroids that led to my hysterectomy, and I’m not happy with last nights ‘ah-ha’ moment that my tail bone is not where it’s been all my life.

How do I know where it’s been all my life? Well, I’ve been kinky for many years now, and have bottomed a lot over the years to a lot of impact play. One of the things I liked about my body/butt in regards to bottoming to spankings etc, is that people didn’t have to worry about hitting my tail bone, because my tail bone has always been situated really deep and high, and well padded. Yes, I’ve recently lost a lot of weight. But years ago I was lighter than I am now, and happily getting spanked with impunity in regards to tail bone woes.

My tail bone, is definitely no longer situated really deep and high, it’s knobby, pronounced, and pushing at the crack of my buttcheeks. How it got there, I don’t know. But I damn well want to find out as soon as possible. Googling looking for options at how/why there has been this change has not made me any less concerned. I know I haven’t bumped it, or broken it, no falls, etc.

I think it’s been pushed out, from the inside.. makes sense no? This with the worsening constipation over the last year, also attributed to IBS/Fibro makes me wonder if there isn’t something pushing/growing on my tail bone that is also pushing/growing on my bowels? Think I sound paranoid and hypochondriacal? I might too if it weren’t for my history with the fibroid – hysterectomy thing followed by the fibro thing, etc. Honestly I’m so hoping I’m paranoid and hypochondriacal, that would be the ideal diagnosis here.

Lightening doesn’t usually strike the same place twice, besides, I’ve had my uterus removed, but in an electrical storm, usually lightening strikes more than once in the same general locale. My body is bust, it’s a lemon, I’ve accepted that, or so I thought till last night, when panic and tears took over, that something else is very very wrong. Something that I can’t blame fibro for, fibro doesn’t move parts of your spine around.

This isn’t the first time discovering something wrong with my body, last time I kept hoping I was wrong, crazy, paranoid, and it was all in my head, it wasn’t. This time I’m muttering the same hopes. Let me just be loopy and confused and paranoid and no my tail bone hasn’t moved of course not, and I don’t have some mass growing in my abdomen.

Now, the trial of waiting for diagnosis begins again. Have to wait till Monday to make a Dr.’s appt. Then I’ll have to wait till the appt. Then I’ll have to wait till I can get in to have tests run… waiting, waiting, waiting.

I can cope, I have to. Nothing that can happen to my body, can be as bad as what happened to my mind when I broke down into deep depression a few years ago, and was hospitalized off and on for the severity of my depression, and my suicidality. Whatever happens, I can’t let myself lose hope like that again, and go down that even darker path. I will stay afloat with the stress of whatever this is, and deal. Because that’s the only choice you have, is to cope.

I’m coping.

I grew up knowing from early childhood on, some people, children and adults, that had the ability to be exceptionally cruel. It was tempting as I got older, into my teens, to see the world in the divisive light, of victims and perpetrators.  It was more tempting however, to try to see things in a way that moved above that dynamic. Otherwise I would have to perceive myself as always having been a victim, and at that point being beyond the ability to continue to cope in that role, would mean changing into a perp. I knew, that having learned at the hands of others, the skills to be an uber-bitch, to manipulate, to destroy with words, to find someones most vulnerable places and go in there for the kill.  That I would rather be the victim. I would rather turn the other cheek. That the only thing I could perceive of that would be worse than being the victim, would be being the perpetrator.  I spent a large part of my life, learning how to disentangle myself from that black and white dynamic. Struggling to avoid relationships and situations where I became a victim. Forcing myself not to ‘fight back’ when attacked by others, knowing that I could ‘win’ and ‘win’ easily, but that I would be hurting those others as much, or more, than they were hurting me.  Every once and a while, mostly in my 20′s, I would slip, someone would hurt me deeply and my wit would retaliate and thrust out bladed words, and rend someone. I hated those moments. I could see the shadows of the people in my past in my own being, and I did NOT want to be those people. I did not want to tear others down, rip them open, wound them. I knew that the biggest ugliest ripping never healing wound gets created inside from being that kind of nasty person.  I overcame my temper, I overcame that emotional overload that would back me into a corner and put me on the attack. I learned to quiet those voices.

For some reason, all through my life, even as a little girl, I’ve served as a confidant, people confide in me. People in trouble come to me for help. Hurt people come to me to unload. I became good at using the same insight into others to instead of manipulate and hurt, to heal, to help encourage growth and understanding.

It prompted me to eventually get my masters in counseling psychology. To be a therapist seemed natural to me. When I was doing the work, it felt ‘right’ like a calling. I worked with women who had or were in abusive/violent relationships. With people who had sometimes a long and horrible history of abuse. I’ve heard stories that even with popular television and horror movies, you can’t imagine. The reality of some peoples lives, is beyond my ability to understand how these women survived. It put into perspective the scope of my own issues and struggles. I became mesmerized by peoples ability to heal, to survive, to function, to cope, in the face of phenomenal adversity.  I had defined a role that rose above victim and perpetrator. I would not be either, I would be a healer, a mediator, a therapist, someone to guide people towards their own empowerment.  I also realized the best way to do this, was the most subtle way, the more the person I was trying to help felt that they were the person discovering, growing, healing, and empowered, by their own power, and not because of me, the better. The more empowered they were in the process, the  better for them. I would offer gentle prodding to help them find the way, but I would not be a trail blazer, I wanted to empower them in their healing and growth, they should be the shining star, not me. The credit for their process should go to them, not I.

Am I manipulative person?  Yes. I’m intelligent, I’m articulate, I’m compassionate, and like everyone else, I have agendas. My agendas usually have to do with wanting everyone to be happy and healthy. I joke with my friends ‘yes, but I only use my power for good’.  Am I a selfish person? I guess that depends on how you define selfish. I’m not materialistic, I don’t really care about money, I don’t really care about ‘power’, I care deeply about love, and happiness. I have a kind of buddhist/taoist approach to life and the world as a whole. I don’t believe the material world around you is what makes one happy, I also don’t believe that traditional concepts of ‘power’ or ‘success’ make one happy. I think happiness is found within, and has mostly to do with our interpersonal relationships. With love, and with a positive creative force. I used to find great joy in making art, and have BFA, in studio/visual arts.  The creative process brings joy, compassion brings joy, giving brings joy, bringing joy to others brings joy. I’m all about the joy.

In more recent years, with my involvement in the local kink community, I’ve had some struggles. I had a dungeon space that I was going to be using for my own personal/private business use. I decided it would be fun to have dungeon parties. I’ve been in the scene off and on for about 15 years. Most of the time Wolfe and I have kept a low profile. We would go out now and then to some of the parties, had made friends with some of the venue organizers, but mostly just enjoyed occasional public play. Most of my kink life has been more apart from the public community than involved with it. I’ve had BDSM interactions with many interesting people over the years, mostly from outside our community, mostly from outside our area/country.  I’ve had involvements with all kinds of people, sometimes ‘important’ people in terms of what society tends to think of as important, ie, material wealth, notoriety, power, etc.  One thing I’m often known for, more in some circles than in others. Is my ability to maintain confidentiality.  I have a lot of secrets, but none of them mine.

I don’t really have any personal secrets, in my own self, I’m an open book. I seem to end up often being the holder of other peoples secrets.

In the recent years in our kink community, because I started doing these parties perhaps, because my natural inclination is to try to help/heal others, I became very much a confidant for many people. I also became perceived has having some level of ‘status’ to some.  Something I really prefer not to have.  The problem with anyone putting you up on a pedestal, even if it is just one person doing so. Is there are half a dozen others with stones ready to knock you down.  It doesn’t matter that you don’t want to be there. The only way to get off is to totally withdraw from those both putting you up, and those tearing you down. All I want in life, is some joy, and to give some joy to others.  Sometimes I was put in some very difficult positions in our local kink community. I know a lot of secrets. Other peoples secrets. I know a lot of ugly things. I have a lot of insight into other peoples natures, their motivations and agenda’s. I know things that if  had become a perpetrator, and not a healer, could cause endless damage, hurt, chaos, and ugliness.

Sometimes it’s hard to hold onto all those things. The ugly things, the hurtful and hurt things. I try to let it flow, taolike, through and beyond me, these things I know are not me, they’re just with me.  It becomes hardest when under personal attack for something, to keep those confided things tucked away. It becomes hard because I know if I pulled them out for my personal use, I could ‘win’. I know it’s a false win though, and the real win comes from being true to myself and my ethics.  There are people who don’t know me, who think they know me, because others have told them about me, people have lied about me, and slandered me, and told stories that are not true. I could straighten out the truth and bring light and proof to those situations and show that that is not who I am, and that others have been deceptive, but in order to do that… I would have to break confidentialities, and I would end up hurting others. Some people would argue that those who have hurt me, ‘deserve’ to be hurt back. I disagree, I can see the ripples and ramifications from outing others, the bigger hurts it would cause.

Instead, I’ll hold the burden. I’ll let some people continue to believe ugly things about me. It hurts, but sometimes life gives you situations that you cannot heal.  Sometimes you are given the option, of victim, or perpetrator.  I’ll chose victim.

Lately, with my ill health, and with me being perceived by some as having some power and influence in our community. The number of burdens I’ve had to bear, has simply become too much. My fibromyalgia weakens my body, and my mind. I can’t sit zazen holding an overflowing cup of ugly drama. I can barely sit at all.
The only option for me, has been to withdraw. I’m tired.

On another note, I was worried I was losing my mind, but supposedly all the issues with my major brain drain are just some of the fun symptoms of my fibro…

Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more…
Last updated April 19, 2007

Chronic Fatigue Syndrome/Fibromyalgia Symptom Checklist

GENERAL
__x__ Fatigue, made worse by physical exertion or stress
__x__ Activity level decreased to less than 50% of pre-illness activity level
__x__ Recurrent flu-like illness
__x__ Sore throat
__x__ Hoarseness
__x__ Tender or swollen lymph nodes (glands), especially in neck and underarms
__x__ Shortness of breath (air hunger) with little or no exertion
__x__ Frequent sighing
__x__ Tremor or trembling
____ Severe nasal allergies (new allergies or worsening of previous allergies)
__x__ Cough
__x__ Night sweats
__x__ Low-grade fevers
__x__ Feeling cold often
__x__ Feeling hot often
__x__ Cold extremities (hands and feet)
__x__ Low body temperature (below 97.6)
____ Low blood pressure (below 110/70)
__x__ Heart palpitations
__x__ Dryness of eyes and/or mouth
__x__ Increased thirst
__x__ Symptoms worsened by temperature changes
____ Symptoms worsened by air travel
__x__ Symptoms worsened by stress

PAIN
__x__ Headache
__x__ Tender points or trigger points
__x__ Muscle pain
__x__ Muscle twitching
__x__ Muscle weakness
__x__ Paralysis or severe weakness of an arm or leg
__x__ Joint pain
__x__ TMJ syndrome
__x__ Chest pain

GENERAL NEUROLOGICAL
__x__ Lightheadedness; feeling “spaced out”
__x__ Inability to think clearly (“brain fog”)
____ Seizures
____ Seizure-like episodes
____ Syncope (fainting) or blackouts
__x__ Sensation that you might faint
__x__ Vertigo or dizziness
__x__ Numbness or tingling sensations
__x__ Tinnitus (ringing in one or both ears)
__x__ Photophobia (sensitivity to light)
__x__ Noise intolerance

EQUILIBRIUM/PERCEPTION
__x__ Feeling spatially disoriented
__x__ Dysequilibrium (balance difficulty)
__x__ Staggering gait (clumsy walking; bumping into things)
__x__ Dropping things frequently
__x__ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
__x__ “Not quite seeing” what you are looking at

SLEEP
____ Hypersomnia (excessive sleeping)
__x__ Sleep disturbance: unrefreshing or non-restorative sleep
__x__ Sleep disturbance: difficulty falling asleep
__x__ Sleep disturbance: difficulty staying asleep (frequent awakenings)
__x__ Sleep disturbance: vivid or disturbing dreams or nightmares
____ Altered sleep/wake schedule (alertness/energy best late at night)

MOOD/EMOTIONS
__x__ Depressed mood
____ Suicidal thoughts
____ Suicide attempts
____ Feeling worthless
__x__ Frequent crying
__x__ Feeling helpless and/or hopeless
__x__ Inability to enjoy previously enjoyed activities
____ Increased appetite
__x__ Decreased appetite
__x__ Anxiety or fear when there is no obvious cause
__x__ Panic attacks
__x__ Irritability; overreaction
____ Rage attacks: anger outbursts with little or no cause
____ Abrupt, unpredictable mood swings
____ Phobias (irrational fears)
____ Personality changes

EYES AND VISION
__x__ Eye pain
____ Changes in visual acuity (frequent changes in ability to see well)
____ Difficulty with accommodation (switching focus from one thing to another)
__x__ Blind spots in vision

SENSITIVITIES
____ Sensitivities to medications (unable to tolerate “normal” dosage)
__x__ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
____ Sensitivities to foods
__x__ Alcohol intolerance
__x__ Alteration of taste, smell, and/or hearing

UROGENITAL
__x__ Frequent urination
__x__ Painful urination or bladder pain
____ Prostate pain
____ Impotence
____ Endometriosis
____ Worsening of premenstrual syndrome (PMS)
__x__ Decreased libido (sex drive)

GASTROINTESTINAL
__x__ Stomach ache; abdominal cramps
__x__ Nausea
____ Vomiting
____ Esophageal reflux (heartburn)
____ Frequent diarrhea
__x__ Frequent constipation
__x__ Bloating; intestinal gas
__x__ Decreased appetite
____ Increased appetite
__x__ Food cravings
____ Weight gain (____ lbs)
__x__ Weight loss (____ lbs)

SKIN
__x__ Rashes or sores
____ Eczema or psoriasis

OTHER
____ Hair loss
____ Mitral valve prolapse
____ Cancer
__x__ Dental problems
__x__ Periodontal (gum) disease
____ Aphthous ulcers (canker sores)

COGNITIVE
__x__ Difficulty with simple calculations (e.g., balancing checkbook)
__x__ Word-finding difficulty
__x__ Using the wrong word
__x__ Difficulty expressing ideas in words
____ Difficulty moving your mouth to speak
__x__ Slowed speech
__x__ Stuttering; stammering
__x__ Impaired ability to concentrate
__x__ Easily distracted during a task
__x__ Difficulty paying attention
__x__ Difficulty following a conversation when background noise is present
__x__ Losing your train of thought in the middle of a sentence
__x__ Difficulty putting tasks or things in proper sequence
__x__ Losing track in the middle of a task (remembering what to do next)
__x__ Difficulty with short-term memory
__x__ Difficulty with long-term memory
__x__ Forgetting how to do routine things
__x__ Difficulty understanding what you read
____ Switching left and right
____ Transposition (reversal) of numbers, words and/or letters when you speak
____ Transposition (reversal) of numbers, words and/or letters when you write
__x__ Difficulty remembering names of objects
__x__ Difficulty remembering names of people
__x__ Difficulty recognizing faces
____ Difficulty following simple written instructions
__x__ Difficulty following complicated written instructions
____ Difficulty following simple oral (spoken) instructions
__x__ Difficulty following complicated oral (spoken) instructions
____ Poor judgment
__x__ Difficulty making decisions
__x__ Difficulty integrating information (putting ideas together to form a complete picture or concept)
____ Difficulty following directions while driving
____ Becoming lost in familiar locations when driving
____ Feeling too disoriented to drive

…. This list is incomplete though, with urinary symptoms, it’s more like having a constant bladder infection for me, I get the urethral discomfort/pain, feelings of urgency.  I haven’t fainted yet, but I’ve taken careful measures to avoid fainting, when I start to feel faint I get down and I get my head lower than my heart, usually I end up leaning over the couch half upside down with my head spinning because I got up to fast and am working hard at making sure I don’t pass out.

In general, it feels like a whole circus of various illnesses wreaking havoc on my body, but I know it’s all attributed to the fibro.  The other thing that really bugs me that they don’t mention is I get itchy, my skin is really dry, and super sensitive. Sometimes everything seems to rub me the wrong way, literally clothes all feel prickly and scratchy, etc.

Okay, that’s enough victim role for me now, I’m off to lick my wounds, and hide from the game players by playing the only games I really like, scrabble, etc.

There’s too much conflict and crisis, drama and negativity in the BC kink scene right now. It seems inescapable and overwhelming.

My day to day struggle to cope with my illness, exhaustion and pain, is more than enough for me on the table stressor wise. I need to eliminate as much incoming stress and responsibility as possible, as my ability to cope is worn thin.  As much as positive support from some in the community has lifted me, it’s not enough to balance out what remains.

Over the last year, with my fibromyalgia I’ve really been robbed of the ability to top and to bottom. The kind of play I can do is very limited. My limitations seem to be growing, and my health does not seem to be improving at all. If anything it becomes more of a struggle.

It’s time to ditch the dungeon.

When we move, I won’t re-create it. If we have extra space it can go towards meditation space, and/or art studio. I need to focus on relaxation, and positive creation. In an environment that’s free of critics and crisis.

I don’t know if we’ll get involved much in the local island kink scene or not, maybe after a while, after a rest and a break from things.

I need to seek health, where I can, while I can.

It’s a lot to process in my life right now. The puppies are 3 and a half weeks and so adorable, they are starting to play, wag their tails, and show some personality. They are so sweet and it’s going to be hard to let any of them go. There are lots more pictures on their site – Hug A Bug Puppies.

We went to the kinky swap meet pre-rascals party on the weekend, and sold a whack of stuff, but maybe only 10% of what we had. We’re thinking of having our own kinky garage sale/swap party in conjunction with a BBQ and potluck when the weather is a it warmer.

There’s a possibility someone may want to buy our house dungeon and all, and mostly furnished. If so, this would make the move so much less complicated. I don’t know how serious the potential buyer is, so we’ll see.

We’re currently readying the house for being put on the market. Well, Wolfe largely is, he’s busy painting and organizing and doing an amazing job. We have lots to do, but lots is getting done. I wish I could help more, but my fibromyalgia has me pretty much incapacitated most of the time.

I got out for some fun, shopping at Value Village yesterday, but then as soon as I was done shopping I was so exhausted and sore, that we had do just grab a bite to eat and come home. I had wanted to go do some grocery shopping and some other shopping, but it just wasn’t going to happen.

My weight seems to have hit another plateau, at 179lbs. I know it has a lot to do with how slack I’ve gotten with eating healthy, and because I haven’t been going swimming. I really need to try to get to the pool again regularly, it will probably help my Fibro ease up as well if I do.

The difficulty is getting motivated to do -anything- the fatigue, weariness, soreness, and generally feeling crappy keeps me wanting to curl up and avoid everything except for the simple distractions of the internet and the television, and of course, some puppy time.

I get very disheartened some times, and I try not to give into it. Feeling loss, anger, fear, panic, sadness, grief, etc, over the changes in my body and my mind because of my illness, is hard to process. If I let myself cry and grieve, then I feel better in some ways, but crying seems to trigger a lot of pain in my head, face, and chest. I try to avoid things that will exacerbate my physical pain. Though if I don’t process my emotional pain.. what then. It’s a hard balance. Cry a little, feel a little, but then disassociate from it in order to not have the pain, emotional and then physical, spiral out of control.

I think my greatest fear is what if I have something more than fibro going on? I’m afraid to lose more functioning, and to have more pain. It’s a struggle because none of the medications I have take the pain away, they may lessen it a bit, blunt things down, but that’s all. Thankfully I’m not dealing with narcotic medications at all.

It’s hard not to wish I was healthy and strong though. I could be playing with and enjoying the puppies more. I could get out and about more, I could be packing up some things and preparing/staging the house for the market, and helping Wolfe do some renovations. Instead I’m here, on my couch, feeling useless and frustrated.

I’m so glad that Wolfe agreed to breeding dogs. I have to tell you, those beautiful little puppies are the best medicine there is.