Yes I am

I’ve been thinking about disability a lot lately. Dancing around the word itself, never quite daring to apply the word to me. Never quite daring to dip more than a toe into the water, so to speak. I’ll use the word indirectly, by tagging a post with ‘hidden disabilities’ or by saying ‘I feel disabled by X, Y and sometimes Z’, but that’s about as far as I’ve gone–and even that fills me with doubt as to whether I have the right to use these terms.

I’m not open about this kind of thing offline, in the workspace, even though there are a few people who know I have (unspecified) health issues.

But I’m not doing myself any favours by denying it.

Here’s a bit of backstory: my partner (R) & I came down with the flu last week. Being a bit feeble in the whole immune system area, I had a somewhat more severe case than R did. For the most part, she’s fully recovered whereas I’m still dealing with some lingering nastiness (productive cough, etc). The flu has also upped the usual fibromyalgia fun so I’m still waiting to see if that will settle back down. Anyway, the point to this backstory is that I had to take time off work–something I hate doing and hoped I wouldn’t have to do now that I’ve gone part time.

I was absent on Monday and Tuesday, made it in on Wednesday (oh god, I felt dreadful by the time I got home) and then I did something really stupid.

Even though I had a medical certificate to excuse my absence, even though I wasn’t the only one off with the flu, I fucking well went and volunteered to make up some of the lost time by working on Friday.

Because I felt guilty. Because I’d had two days off out of the three I’m supposed to work. Because I have serious anxiety problems about being sick, and was so convinced that I’d be fired that I offered to go in on Friday just to convince management I’m not a complete liability. Because I’m used to hoarding my sick days like treasure, as I never know when something nasty will flare up. Because I’ve spent the last year working my socks off trying to make up for time lost at doctors’ appointments, running myself into the ground and making myself sicker because sick days are precious, dammit.

Because I didn’t want my manager to think I was skiving, or being a slacker.

And that’s the heart of it. I don’t want anyone to think I’m lazy. I’m already working part time because I simply cannot cope with full time work any more, and I can’t stand the questions I get about it. I’m not open about my health conditions, and I have no acceptable answer when I’m asked what I do when I’m not at work. I’m not studying. I’m not bringing up children. What’s my excuse?

I have been doing so much soul-searching lately, and trying to come to terms with all the changes that have been going on. Trying to come to terms with the word disabled. I still can’t say it out loud, you know, that I have disabilities. A workmate once laughed when I mentioned something about disability discrimination, because I’m not in a wheelchair or anything. Of course I’m not disabled.

But I am. I am disabled, and I’m fucking angry about the way the world is set up right now. I’m angry about the way people with disabilities are always pictured with a nifty mobility aid so that they’re easier for the Able-Bodied to spot. I’m angry about the constant stress of the train journey to and from work, because I can’t stand for the length of the journey but don’t dare ask someone in priority seating to move because I don’t look disabled (unless it’s a day when I actually need my walking stick. Then people are very Sympathetic. I’m angry about that too).

I’m angry about the lack of part time jobs, job share opportunities, and flexibility with sick leave so that people like me find it easier to support ourselves. I’m angry because I’m finding it increasingly difficult to cope without a car–my doctors are scattered around Brisbane and I have to travel by train then bus to get there. I’m angry because I don’t think I’ll ever be able to learn to drive (anxiety), and so a routine trip to one of my doctors takes the best part of a day. I’m angry because being sick is a full-time job and there aren’t any days off. I’m angry because I have to work twice as hard as any abled person just to stay afloat, and I’m angry because they take this for granted and praise me for being so brave and committed to my job.

I’m angry about the way I feel awkward and ashamed and guilty of appropriation when I mouth the words I am disabled silently, alone in my room, because I’d never dare say it in public, because there’s a nasty little voice in the back of my head going no, no of course you’re not disabled, disabled people are all paralysed and stuff like that, they have SERIOUS problems, YOU are just lazy. And so I read wonderful articles like this and this and this in an attempt to silence that little voice, and sometimes I get close to smothering it, and sometimes I don’t.

Maybe it’ll never go away completely. Maybe it doesn’t have to. Maybe that voice isn’t what matters. Seaneen Molloy, in her Ouch! article on disability, says this:

It’s less about having a right to refer to myself as disabled and more about what right I have as a human being living with an illness that causes me disability.

The right to take my sick leave without pressuring myself into ‘making up time’ would be a start, I think.

posted by jeneli

[Via http://jeneli.wordpress.com]

Back to reading “Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome” by Dr. Rodger Murphree

I am so sorry I have been not reading and updating you guys.  Life got in the way, which made me too tired at night to read.

Well, I’m back to now.  I really want to have this book read by March 25th because my support group meets and the topic is on books about Fibromyalgia.

Enough chit chat.  Here we go!

Part 3: Your Path to Healing – Chapter 6: Why Conventional Medicine Alone Can’t Beat Your Illness

(portions of this blog came from Dr. Rodger Murphree’s book)

This chapter is very long so I will list some of the key points:

• Conventional medical treatments of FMS and CFS focus on controlling various symptoms.  Physicians generally rely on pain medications of various sorts, muscle relaxants and tranquilizers, antidepressants, and nonsteroidal anti-inflammatory medicines.  Unfortunately, as you already know, these drugs rarely yield lasting results.
• But conventional medicine has its limits, and our quick-fix society has gotten out of hand.  So much of modern medicine is about covering up our symptoms with drugs, rather than treating the causes that are to blame for the symptoms.  This is like trying to mop the wet kitchen floor while ignoring the leaky roof.
• Many drugs are associated with side effects, and the majority don’t actually cure anything.  Treating symptoms doesn’t translate to better health.  We’ve got to stop thinking “just stop the pain” and start thinking “let’s fix the problem”.
• Short-term use of drugs to mask unwanted symptoms is certainly appreciated by both patient and doctor.  But FMS and CFS are not short-term illnesses.  And drugs used to treat these symptoms can lead to dependence and further complications.  One drug’s side effects can initiate new symptoms, which must then be treated by more drugs.
• With so many different symptoms, it’s no surprise that fibromyalgia and CFS patients are typically taking 6-12 different prescription drugs. 
• Many of the most commonly prescribed drugs for fibromyalgia have side effects that are similar or identical to the symptoms of FMS or CFS.  These similarities can cause a lot of confusion when doctors are trying to determine the effectiveness of treatment.
• It’s important to realize that your drug or drugs can be causing or contributing to some or all of your symptoms.
• Drugs deplete essential nutrients that the body needs to properly function, but it can take weeks, months or even years for the drug to fully deplete the nutrient and for you to see the side effects surface.

One question and point made by Dr. Murphree was “How many folks with fibromyalgia get well under the care of a traditional rheumatologist? I speak to fibromyalgia support groups across North America, and I can tell you what the answer is: very few.  The three-month wait for a new patient appointment typically ends in a two-hour interview and exam followed by a 10 minute visit to discuss test results, and then several prescription drugs and a follow-up appointment every 3-6 months”.

The next part of the chapter lists some drugs commonly used to treat fibromyalgia.  Along with information on the drugs, possible side effects are listed.  Your experiences may be different from what’s described, but be sure to read about the drugs you are taking.  See if they might be causing some of your symptoms.  If you suspect they are, work with your doctor to slowly wean off of them.

(unfortunately, this part was very long so you are going to have to read the book for information and side effects)

• NSAIDS (Nonsteroidal anti-inflammatory drugs)
• Narcotic Analgesics
• Sleep Aids
• Antidepressants
• Tranquilizers
• Benzodiazepines
• Anticonvulsant Drugs
• Beta-Blockers
• Stimulants
• Statin Drugs

The last part of the chapter is about Treating with Natural Medicine.

• Natural medicine uses naturally occurring foods, vitamines, minerals, amino acids, essential fatty acids, and herbal supplements to augment the nutritional status, and therefore the health of the body.
• Herbs have always been integral to the practice of medicine.
• In general, herbal medicines work in much the same way as do conventional pharmaceutical drugs, via their chemical makeup.  Herbs contain a large number of naturally occurring chemicals and those chemicals have biological activity.
• Herbal medicines should be prescribed by a professional who is familiar with the actions and interactions of herbals and prescription medications.

I really liked this statement from Dr. Murphree: “Prescription medications can, in some cases, be helpful, but they can never take the place of our own self-regulating, God-given healing mechanisms”.

More and more doctors are turning to nutritional medicine.  The tide is turning and conventional medicine is beginning to lose some of its luster. 

The next chapter is: Chapter 7: Treating with Orthomolecular Medicine

[Via http://fibro2010.wordpress.com]

Pain is my new alarm clock

Okay, this is really starting to make me mad… for two weeks straight now, pain has been my alarm clock… After an on-and-off tossing and turning- maddening kind of sleep I get woken up sharply (and way too early) by pain.  There has to be a better way…

I am taking a boat-load of medication at night, and I am sure under normal circumstances it would knock an elephant out!!  WHY oh why is it that I can’t get more than 3 hours of sleep?!?  Grrrr…… it might be another long day.

Again this morning, pain had me out of bed before I could even open my eyes… It is so intense that I can barely breathe, and I am struggling to sit here at the moment… but I thought I would write SOMETHING down as I wait for my meds to kick in.. at least this way I have a distraction.  I am MAKING myself go back to bed today… I really don’t want to, but I absolutely have to get some rest…. I am running on empty here, and the fumes are almost gone as well… If I stall out, it won’t be a pretty picture, THAT is for sure!!

On days like this, I try to remember what I was like BEFORE pain hit.. I know that once upon a time I didn’t feel this way, I slept like “normal” people do…. I woke up to my kitty scratching at my feet and the sounds of music blaring from my radio… I turned over and went back to la-la land on weekends… I coveted the “sleeping in” ritual…. I know I did, but I just cannot make a connection to those days anymore…. it all seems so distant and unreal to me now….. With each day that passes I remember less and less about what it was like to live a life with no pain.

I am not asking for much I don’t think…. 5 hours of sleep each night… peaceful, restful, healing sleep…. I would love to be woken up by my son at the bedroom door, or by my kitty wanting to get scratches and love… I would even be THRILLED to be woken up by the garbage truck outside on the street…. All the things that people complain about, I would LOVE to experience…. because it has to be better than what I’ve got now…

My meds are starting to work now, and the shock that I felt an hour ago is being replaced with exhaustion…. so I am heading back to bed…

Whatever it is you are doing this weekend, I hope you are doing it with a smile in your heart, and less pain in your body…  You all keep me going some days… and I wanted to thank you for being my strength at times when I cannot seem to muster any up on my own…

Yawn… stretch… ouch…. time to go back to bed…

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

[Via http://gracefulagony.wordpress.com]

Bust a Move

It’s time for me to bust a move, again.   

Walking has always been my thing, whether it was my escape or my salvation.  At first, I’d “take a walk” when I was running away from home, at age five, with a little suitcase in hand.  Later, I learned walking would allow me the quiet time I craved to have my creative thoughts and bright ideas.  I’d make my big plans, groove out to music, and perhaps most importantly, walking would calm me down when I was upset or pissed off, and being a Sicilian, I got PISSED OFF, especially since my life had thrown me a lot of challenges and obstacles.  Walking just instantly makes me happier, and there has been rarely a day I haven’t walked in my entire life, except for this past year with some health things going on, like neuropathy pain and my hysterectomy recovery, although the hospital did have me walking at 6 am the following morning, those bastards.  But you know what I mean – I’m … just a walker.  

I learned to walk everywhere as a kid, mainly because I never had a bike until I was in college.  When my friends would go for a bike rides, I’d have to walk or jog along side them if one of their extra bikes was already in use.  My mom was not one of those mothers who would drive me all over the place, especially since she was a raving lunatic when it came to driving, and a nutty unmedicated bipolar the rest of the time.  To this day she still brakes at every intersection, every single block.  When she had to drive me to college at Michigan State, it would take us three hours to get there, more than twice the normal time.  But as a kid, she seriously charged me $2 for a one-way ride, which I couldn’t afford unless The Big A was with me.  But, when The Big A was with me, the price then went up to $4 total, $2 a piece, which of course The Big A paid, but we didn’t always get our money’s worth.  My favorite memory of my mother’s driving was when The Big A and I had been stuck without coats on a cold and rainy November school night, about a mile away from home, and we were forced to call my mom to come get us.  Not only did my mom’s 20-year-old car have no floor in the back seats, but on this night it did not also have working windshield wipers, so she and my brother had to roll down their windows, and pull the heavy rope that was tied to each blade.  We got soaked from the open windows, and the ride took us like 30 minutes because she could barely drive with one hand, with all of her stops at each block, not to mention the water splashed up from the floor, where we already were holding on to our feet in the air above where the car floor was supposed to be.  If we had walked home, we would have been drier, safer, and less soaked.  I once told this story to a college friend who laughed for over an hour, so trust me, the story is even funnier than it sounds.  So, needless to say, I learned sometimes it is just easier to walk than ask for a ride.  

I walked everywhere until I was 25 years old and finally got my driver’s license.  Oh, how I was terrified to learn how to drive, especially since I had been the passenger in a number of near-death car accidents.  Plus, the first two times I ever tried to drive I nearly crashed both times, but I suppose it was because I was blind as a bat and went by the name Squint until I got contacts at age 16.  Walking in high school wasn’t a problem, as my friends lived close and my boyfriends always had cars.  But at college, I had spent years walking between 40 – 60 miles a week, walking all over campus, especially since I always managed to live far away from campus and work.  I did get my first bike ever during my first week of college, but on the third day I was hit by a chinese dude in front of Brody Complex who managed to drag both me and the bike without noticing, and the bike was never the same since, very hard to ride.  I mainly walked, or friends occasionally drove me to class or work.  My last year at State I moved eight miles away from the bar I worked at, and my friends basically banded together and forced me to get a car, because they knew it was time.  I was completely terrified, as I grew up with that crazy lady driver and had no idea how to drive, even though I somehow passed my driver’s test at Secretary of State.  I think the guy just felt pitty for me because my friend forced her way into my driving test and she kept telling me not to crash her car since she had just crashed it drunk-driving three months earlier, and her dad would kill her if she had to get it fixed again.  I lived at State just three more months before moving to Las Vegas, and I never once drove on campus or downtown East Lansing once I got that car.   

Life has just come full cycle for me, because last month we had to go down to one car, and I am hoofing it back and forth to my volunteer jobs.  With my husbands schedule, there really isn’t a way for me to drive him back and forth to work to keep the car at home, trust me, it is a long story.  I don’t really mind that much, because I can walk anywhere in town if I need to go somewhere.  When we have events, then it’ll suck trying to arrange four people’s schedules, but we will cross those bridges when we come to them.  Truth be told, I’m having a really hard time walking right now, because my knees and back are killing me.  But, I just tell myself “too bad” and I’ve begun my hard-core spring training this week, but I’m moving pretty slow, according to the hubs.  I still walk, because I know walking will make me feel better in the long run. 

I’m a little broken down these days since I have Degenerative Joint and Disk Disease, and it is everywhere – my feet, my knees, my SI Joint (The spot where a tramp stamp would go) my L-Spine, my C-Spine, and my hands.  I’ve got bone spurs in both of my feet and one in my neck, and I need spine surgery in two places because I have seven disks that are torn, bulged, and/or herniated, and one of them is also pushing on my root nerve in my neck.  I even wore leg braces for 18 months until my doctor found out it was making my knees worse.  Oh, I have Fibromyalgia, too, so I have to worry about weird pains from things like my shirt and pants touching my skin.  Seriously.  I know that sounds nuts, and trust me, it makes me feel nuts, but it happens to me daily.  Right now almost every piece of clothing I wear is plushy or soft or smooth.  I can’t do heavy, tight or polyester.  When I found this sports bra for $10, I could have died, because it is soft, supportive, yet loose, and still manages to give me a decent-looking rack.  Thank you Walmart!  

  

I had to update my walking clothes, because the last thing a girl wants is to feel more miserable when they already are miserable when they walk.  I realized I had two pairs of Nike’s, and one pair was three years old, the other was five years old.  I keep my clothing pretty nice, so you’d never know it by looking at them.  I bought a new pair (at a bargain price, because I am the bargain hunter) and when I walk in them it feels like heaven.  I had forgotten that cushion-y feeling Nike’s give me, and it was the best $ I’ve spent all year.        

  

 I also want to walk more for fun, because I am tired of being in this house.  Naturally, my iPod died the same week I had to turn in my car, so I had to get a new one, because I can’t walk that long without music.  I’m so mad, because this was my original iPod, so it was only a few years old.  I suppose it was time for it to die, because they don’t build things to last.  I have a stereo at my mom’s house that is twenty years old that had been moved all around the US, playing at 10 pretty much 24/7, with beer and booze spilled into it a million times.  But an iPod that is built with ”modern technology” only last six years, so go figure.  I got the iPod Touch, which is the love of my life, but the 8 Gig didn’t go very far, so now I’m mad I can only squeeze in 900 songs.  Here she is, in my fancy arm band that was $5 and it fits people like me who suffer from “fat-arm syndrome,” or FAS.  

  

And, here are the best pair of pants I have ever worn.  I need like 15 more pairs and I really wish I was rich so I could buy some more.  Since I lost some weight over the past year, all of my workout clothes are either from 2003, 2005 or are a size fat.  I’m still wearing all of them because I don’t really care about them being faded or baggy, because no one sees me, but still, I needed one cute outfit, for those days when I expect to run into people, because, I always run into people.  My goodness, did I ever find the best feeling pair of pants in my life.  Nike’s of course, but they were also on sale, because who the hell can afford their normal $50 price tag?  Nothing in my workout collection ever cost me more than $11.99 at Kohls, so I feel like royalty today when I put them on to work out.  Oh, yes … one of my volunteer jobs has a gym and I can work out for free, which is so cool, but totally killing my arse.  

  

Walking is like this free, magical drug that helps prevent all sorts of medical conditions.  It improves a person’s health in so many ways, yet I don’t see enough people doing it, or at least in Michigan they aren’t, since we are a state that loves our cars and we don’t have trains, subways, or even extended bus routes.  I’d have to walk maybe 10 miles until I could catch a bus, but then that bus would only take me to Detroit or by a mall or shopping center.  I’d much rather live like a New Yorker, taking trains and hoofing it.  I know some of you readers do walk or run daily, or do other forms of exercise, which is great, but I don’t understand why people, as a general rule, don’t walk more.  Heck, even my own kids whine when I force them to walk to the ice cream place, and it isn’t even a mile away.  Why have we moved away from walking and loving the outdoors to staying inside to exercise, or to just not exercise at all?  I rarely see kids outside playing in my stepchildren’s neighborhood, and rarely in my own, and I think back to my childhood in the 70s and 80s, when as kids we were basically forced to stay outside and play until the streetlights come on.  I’m not trying to be preachy, I’m just lamenting walking “falling out of fashion.”

[Via http://thegirlfromtheghetto.wordpress.com]

Could not Do It Again

So, I am sad to say that today the illness has ruled me.  When I got up this morning, I was in tears.  I gave it my best shot to get up and get dresses.  Even the hot shower did not do anything to aid in my relief, so I called in.

I really hate not being at work.  I hate letting this thing beat me!  I was doing so good all week.  All I wanted to do this week is stay in bed and just feel like a person.  I had 1 day this week were I didn’t feel like the living dead and that was Tuesday.  The fates were looking out for me that day as far as pain goes.

So there may be many posts for the day, as I have nothing else to do but sit in bed watching TV or playing on my laptop.

[Via http://livingwiththepain.wordpress.com]

Having A Wonderful Supervisor

I have a wonderful Supervisor at work. 

She understands my situation with Fibromyalgia.  She told me that she has a dear friend with it and helps her out when she needs the support to carry on.  It really helps to have someone on your side that truly understands.  She doesn’t know the extent of the pain, as she has never experienced it herself, but she can see it.

The other day I went to her office for a meeting and she was looking at her computer when I first sat down.  When she finally looked at me, she said to me, “This is a bad day, I’m sorry let me know if there is something I can do.”  I was  amased because I was smiling and talking to her just with a smile in my voice.

She could tell by my facial expression that she actually knew, so she just said the “rocking.”  I didn’t even know that I was rocking.  It’s something that I have been told that I do when the pain gets really bad.  Unconsciously, I rock because the motion actually helps ease the pain, even for just a moment.

Anytime I really need something that has to do with my pain, she is willing to help in any way possible.  My boyfriend even has someone in another department that is looking out for me.  It’s nice to know that people care, and I am glad that I am not taking advantage of the assistance that is offered.  I don’t want them to think that I take things for granted and that I truly appreciate the things that they do, no matter the efforts.

[Via http://livingwiththepain.wordpress.com]

Acceptance? Maybe...

Have I been judgmental of disabled people?  I never thought so… but I’ve never been one either.  Until the past few years.  But I’ve been judging myself for my lack of ability to do anything.  I’ve berated myself for my laziness and motivation, kicking myself… trying to make my body do what it used to… and it just doesn’t listen!

I have gone from an independent person, to an invalid.  Basically that is the deal.  And I’ve fought it…. to no avail.  My body has not cooperated.

Whether this ends up being chronic fatigue or something else, I have not been able to do much of anything for nearly 2 years now.  It has been longer, but the worst of it hit right after my father’s death the end of June, 2008.   I am just beginning to be able to do some things if I rest up for it.

I’ve never been skinny… far from it… but I have enjoyed a very independent life.  I’ve been able to do what I’ve wanted.  I’ve never been in perfect health or shape… but I’ve always enjoyed exercise and weight training when I could fit it into my life.  Right now, the old ladies in the arthritis swim class can kick my butt… I can’t keep up with them.  Aaargh!  And they go 3 times a week… I can barely handle once, because it takes me a week (no joke) to recover for the next class.

I was even too wiped out to keep up on here for most of it.  It has taken everything I have to take care of my 4 kids… and even then, only the basics!  I miss you all…

I’m seeing a new doctor,  a neurologist,  who is doing a slew of tests… so we’ll see what it comes down to.  But I finally have to accept the fact that for the time being, this body has stopped working the way it is meant to work.  I hope it starts again soon, because I am feeling just enough better now to be BORED SILLY!!!!  And really depressed.

[Via http://tobeafool.wordpress.com]