Knowing your limit

We all want to say yes, do it all, have it all. We all have some sort of limitation whether it be Fibromyalgia or something else. Those of us that “suffer in silence” from something we can’t see have it just a little bit tougher. People don’t see an amputated limb or a limp, they see what appears to them a healthy individual.

As a result it’s left to me to explain my limitations. Some people probably think me unreliable because sometimes I just wake up to sore to do the thing I wanted to do that day. I feel bad because I was always raised to keep commitments but sometimes I just can’t. It’s not that I am not strong enough or because I’m suffering from a flu, it’s because I know that if I push the envelope too far I will pay for it later.

Yesterday was one of those days. My arms and lower back have been very sore. I planned a fun dive with a friend and I was really looking forward to it. But when I woke up yesterday morning I could just tell I wasn’t going to be able to do it all. I spent Saturday and was to spend part of Sunday in class for my EFR-I credential and I just knew that diving and pushing it was a bad idea. Luckily she was understanding and said she was thinking of canceling as well. So I was saved from feeling guilty.

The limitation frustrates me to no end. I want to be able to do it all, and lately I have been. Because I have been doing so much my body has been telling me to slow down. So, rather than go diving, I came home and took a nap. It felt good to rest and I felt an instant relief when I layed in my bed. It’s an “ahhh” feeling.

The holidays were so crazy and they flew right by. I worked 3-4 days a week in addition to my duties as a wife and mother. Now that’s done and had a relatively slow week last week. When I slowed down and took a day to catch up around the house is when I felt it. Starting tonight I have the instructor development course which will run 4 nights a week plus weekends for the next 3 weeks. After that I have the Instructor Exam which is an entire weekend. So I have to save my energy for that. I have to discipline myself, go to bed early and rely on some help from my friends and my husband. Hopefully he knows that he will be doing most of the cooking/cleaning and kid chasing for the next 3 weeks. John is incredibly supportive and has been alongside me through the diagnosis and treatment. He knows, sometimes before I do, when I am getting run down. He’s usually good at helping out.

I’m excited for the things to come in the coming weeks and I think I’m prepared. All I need now is for my body to hold up to the demands of the course.

I have experienced the tender points in my elbows for the first time this week. They are sore to move around and so is everything else it seems. But this is the first time experiencing this particular pain. My feet have been pretty sore too, at times it makes me limp. I’m hoping for the some relief with the new shoes I ordered.

I try very hard to manage the pain and I usually do pretty well with Yoga poses, the TENS unit, and when absolutely necessary pain medication. I don’t take motrin because too much of that will give me and ulcer. Tylenol isn’t a good option either because long-term use of that will trash my liver. So I try my best to manage without medication. I do have days though where I’ve tried everything else and I have to submit. I count myself lucky that I don’t need heavy narcotics like Vicodin or Percocet. The best pain relief for someone with Fibro is to remain well rested so I have to work on getting to bed earlier and grabbing a nap where I can.

So here’s hoping the next 3 weeks go smoothly.

Pain management- all the tools in the toolshed

It’s been a rough week in my world.  I’ve been working and its physical labor.  I love what I do and its all worth it when I hit the water.  I am thankful to have had several good months of low pain levels.  The Lyrica has been doing it’s job and I had almost forgotten what it’s like to use several methods in collaboration to control the pain and stiffness. 

I think it’s important to remember that prescription medication is not going to work all by itself.  It’s also important to note that non-pharmacological treatments are beneficial to overall health.  People who suffer from chronic pain end up running out of medical interventions and because of that we often swear by other methods.   So, for those of you with chronic pain, here are the tools that I use.

1. Lyrica
2. Tramadol
3. Hyland’s Muscle Therapy
4. TENS
5. Heat and Ice alternated at 15 minute intervals
6. Yoga/Deep Breathing 
7. OMT- manipulation therapy provided by my doctor.
8. Distractions

Each one of these methods helps in a different way.  They Lyrica keeps the pain down on a good day so that I am not incapacitated as I used to be without it.  Often, when I start feeling achy it’s when I am out of the house so the tramadol can help hold off the worst of the pain until I can get home.  The TENS is used to block the pain signals to the brain.  It does this by delivering small electrical pulsed directly to the effected muscles.  The effect lasts only as long as the machine is in use though.  Heat and Ice help also to relieve the muscle tension.  While there isn’t a dramatic result to be felt, I do believe it helps over the long run in shortening a flare.  Yoga is pivotal because the deep breathing along with the stretching can work wonders.  When you stretch it forces those muscles that are balled up to stretch thereby reducing tension and pain.  OMT or Manipulation therapy is similar to chiropractic care.  But, my insurance doesn’t cover chiropractic.  But, my doctor happens to be a doctor of osteopathic medicine who can perform this.  Distraction is perhaps the single biggest tool.  As long as I am moving around, for the most part I can push the pain aside.  But, as soon as I sit down I feel it. 

I do my best to work around the pain but it’s not always possible.  Sometimes that pain wins.  Lately, I have been lax with my Yoga practice and it’s catching up with me.  I called the doctor this morning and made and appointment for OMT on the 21st.  I also left a message for my doctor and he called me back.  For the time being he gave me flexeril.  I don’t want a stronger pain medication because of the potential for dependence.  Unfortunately for me I’m allergic to Coedine and because of that my options go from tramadol to oxycodone.  The middle of the road narcotics are all off-limits due to my allergy.  There are, of course, a few other medications that can be used but I don’t really want them. 

Months ago I explored trigger point injections and was told by the doctor to “suck it up”.  I received quite a lecture and I wasn’t happy about it.  When I go see my doctor on the 21st I plan to ask him if there is another pain management doctor I can see or if he can specifically note that he wants trigger point injections. 

For now though, I have to lay low.  That’s the hardest part for me.  Not being able to do the things I want to do with my kids or not feeling well enough to cook dinner.  One thing I see now is that I have had this fibromyalgia as long as I can remember.  So I’ve gotten good at coping and compensating.  The trick is to communicate to the doctors that the pain is killing my quality of life.  I hope to do that on the 21st and also to get some relief.  But, until then the tools in my tool box with just have to do.  I just hope that I don’t get told “there is nothing else we can do” because that puts me sitting life out on the bench for longer than I would like.  But, whatever the outcome I have to take it one day at a time, hope for the best and plan for the worst.  

 

Now I have a question for you…

I haven’t written in this blog in quite a while.  My pain has been well controlled with the new medication regimine and I have been feeling pretty great.  If you read my other blogs you have seen that I have been diving and hiking and enjoying life.  I’m thankful for that. 

The last few days, though, I haven’t been myself.  I don’t know whether you call it an episode of fibro-fog or a small flare.  I spent a lot of time sleeping and the rest of the time I wasn’t really myself.  I just felt overwhelmed by every little thing and had lots of negative thoughts.  Nothing too severe like during a bad depression, more like every task was daunting.  The physical pain reared it’s ugly head again too.  For the last few months I’ve kept it at bay.  At least at a tollerable level.  The last few days everything ached and I just wanted to sit around and do nothing.  Of course, if I sit around then I feel guilty about not doing anything.  It’s a cycle I prefer to avoid. 

I’ve experienced this before but I always seem to have been “sick” with a cold or flu.  As long as anyone can remember it’s been my body’s reaction to illness, sleep.  This time, though, I wasn’t really physically ill.  I was just incredibly tired.  I’m sure it’s from weeks of burning the candle at both ends.  When I didn’t have to get up and be somewhere I just collapsed.  Such is life with fibromyalgia I suppose. 

I know I’m supposed to pace myself and not take on too much but with 2 kids, a husband and a life of my own that’s easier said than done.  There are things that need to be done and I can’t always say no.  I’m not in denial.  I know I have limits.  We all do.  Mine may be lower than the next person but it’s not all that different. 

Whatever it was, I’m glad to be coming out of the fog today.

Take that Fibro!

Yesterday I spent the day training to be a rescue diver.  I hesitated to take this class because of fibro.  I didn’t know if I could do that physical tasks that are required of me.  I had to perform several tasks that were very physical.  When I asked someone about it I was told not to let that keep me from completing the class.  So I went for it. 

Today, though, I’m paying for it.  Every muscle in my body hurts.  But there is a sense of accomplishment too.  A sense that I didn’t let the disease win, even if only for a day.  I feel like I did something that some people in my situation wouldn’t or couldn’t have done.  Despite the fact that I knew it would hurt I did it. 

I hope that this will serve as a possible inspiration to others as they go along their journey.  You truly can do anything you put your mine to.  Unfortunately, sometimes that means pain for people with fibro. 

Today when I walk up and down the stairs my legs ache.  My back was aching last night and my shoulders are sore.  But I would do it again.  I learned a lot and I was able to gain some skills that will allow me to be confident in my abilities.  It’s not about being a hero it’s about knowing how to get you, and someone else out of a tricky situation.

Another lesson came after the class.  When we returned to the shop we all washed our gear.  I packed my things into my gear bag and set my weights on a rock to drip dry.  Then I went back into the shop and was talking to the instructor about the search and rescue he does with dogs.  I left the shop with what I thought was all my gear.  When I got home I hung things up to dry and I promptly realized that I didn’t have my octo.  This is a big problem because that one piece contains both of my regulators and my computer.  It alone is about $1000.  I knew that someone would probably find it and I asked a friend to look for it when he went in last night. 

This morning I got up and went down to the shop expecting to find my octo on the work bench where my friend said he would leave it.  The shop manager didn’t know anything about it.  Gulp.  So I called my friend and left a message.  He called me right away to let me know that he hadn’t found it.  Oh crap!  So I was freaking out.  I brought the kids back home and brought them to a friend’s house while I went back down to the shop to take a better look for it. 

Thankfully I did find it in back hanging up.  My instructor must have found it and put it away.  We didn’t find the weights but that was a small problem compared to that octo.  I figured that they may have gotten mixed with the shop weights and would make their way back this afternoon.  But I wasn’t even out of the driveway though when the owner called and said she had them. 

She told me to let this serve as a lesson to protect my gear.  I didn’t say a thing about my disease.  She would just think I was making excuses.  Maybe I was.  I find that its far easier not to even bring it up.  She’s aware of it because I’ve told her and it’s documented on my paperwork from the doctor.  Most people just don’t really understand.  It’s not that they don’t want to, it’s just that most people don’t have the training and knowledge to really understand. 

Tomorrow I get my butt kicked again.  I’m told it will be harder than yesterday.

Duh!

I don’t really know where to put this post.  On one hand this is less about fibromyalgia and more about my day-to-day trials.  On another it has everything to do with fibromyalgia and figuring out how to pick up and carry on.  So here I am writing about this here.  I guess if you want the whole story you’re going to have to read the rest on my other blog.

Yesterday someone said something to me that made a lot of sense.  It wasn’t even the words that hit home, it was the idea.  I was talking to my friend about why I was looking for secretarial or some sort of other work and she didn’t really seem to understand.  It made me thing to myself “what am I thinking?”.  

When we moved here my husband was spoiled.  He was really used to having me do everything for him.  He was used to me paying the bills, taking care of everything the kids need, taking the kids to school, etc etc.  Since I finished my degree I want to get my career started.  At first I was working at this nursing home and I was still responsible to get the boys up and off to the babysitter.  John refused to take any of that responsibility at all.

Thanks to my brother, I’ve come to see that I need to start applying for positions as a CNA in order to make my way into a nursing position with one of the hospitals here.  Even though that was my focus I still had the problem of getting the kids up and off to a babysitter.  So, when I found out that a CNA position would be 6a-6p or 6p-6a I was worried.  I knew that the more likely scenario is that I will be working nights at least for a while.  I can’t be picky and for a little while I will be at the mercy of the employer because, after all, they are giving me an oportunity. 

My friend said yesterday that she’s a single mom and if she can work out daycare for her son with her being in the army I can work it out too.  She’s right.  So, I got off my butt and I decided to give hospital work another look.  I told John that he will have to get the kids off to the sitter if I’m at work.  He’s their father and that’s what needs to be done end of story. 

There is one more big factor.  All along our long-range plans included me finding a job right away when he retires.  This would allow for him to take his time looking for a job and would allow us some financial stability.  As a nurse I should be able to command enough money but that only works if I have some experience. 

What all that means is that whatever it takes I need to get my nursing career going.  

I’m really not sure what came over me the last couple of weeks.  I feel like my train went off the track.  I worked way too hard to walk away now.  I’m enjoying my time diving but it’s not a long-range plan.  We can’t fall back on my diving when John retires.  Only my nursing degree can do that for us.  It’s not just about me, it’s about the whole family and our “retirement” plan. 

On a positive note, my pain has been pretty darned good lately.  I’ve been able to do pretty much anything I want.  I still have pain, sure, but I’m never getting rid of that.  I’m trying to make the best of a literal pain in the butt.  I guess I’ve found a combination of medications that is working.   

I guess it’s time to put on my big girl pants and suck it up.

Another blow to my “career”

I got another call today from Hawaii Pacific Health (hph).  They were looking to interview me for another position.  Another foot in the door.  She wanted me to come in either tomorrow or friday in the afternoon.  I can’t because of picking up kids and John is teaching this week. 

*Big Sigh*  You may remember that I came to the conclusion that I wasn’t going to look for full-time hospital work right now.  I’m learning albeit slowly, that I have to strike a balance and that fibromyalgia is part of the equation.  I’ve had to redefine my parameters for life in general. 

When the phone rings asking me to come in for an interview for any job my gut instinct is to bend over backward to make things work.  I have a good work ethic and not contributing financially is something that bothers me.  I know I do a lot around here but I want a career for myself too.  I want to leave a mark on the world even if it’s just a little one. 

But I have to be realistic too.  Working a full-time job that requires 6pm to 6am or 6am to 6pm shifts just isn’t in the cards for me.  I don’t know if my body could take it, and I definitely don’t think it will work for my family.  Deep down I know the right job will come with time but it’s hard to not just jump at the first opportunity.  I always have. 

There are many factors in determining if I job will work for me such as the schedule, the pay, and the work itself.  Is it going to pay enough for me to go to work every day?  And that is a real question because every day that I go to work I have to pay gas to get there and babysitting costs.  I may have to juggle multiple babysitters. 

Slowly I’m learning that I can’t have it all.  But that doesn’t mean it doesn’t feel like someone is twisting that knife each time I have to say “I don’t think I can make that work”.  My instinct says that I will make anything work and yes I’ll take what I can get.  But my brain says “no, you have to consider the greater impact on those around you”.  That scares the hell out of me.  How long am I going to look before the right job comes around? 

It makes me want to give up.  It makes me think that a career for myself is just impossible until John is out of the military.  So for now….the dream is just that, a dream.  Maybe I’ll find something that will work, maybe I won’t and that’s depressing.  I’ve given the army the last 5 years.  I’ve been there time and again when things change at a moments notice ready to step in and take over, ready to be a single mom.  I’ve dedicated my time and effort to supporting my husband.  I keep the household running and he goes to work. 

I am lost.  I don’t know whether to put nursing on the back burner, whether to change careers all together or just take whatever pops up.  Do I start applying to retail jobs just to get some kind of work?  Do I look for work from home?  Neither is what I want to do.  I question myself every step of the way.  I question the greater plan in all of this.  Somehow my path will become clear when it needs to be.  I have to believe that.  Even though some days I just can’t see it.

We all know what we’re supposed to do…

but most of us don’t do it. 

I’m trying to get on the weight loss bandwagon.  But every time I get one foot on board something comes along and throws me off.  Most of the time its me.  I dread going back to tracking everything I eat.  It makes me a slave to my computer and takes away from my day big time.  I hate not being able to eat out because sometimes with the kids and things going on.  I have trouble with portion control also.  I can measure the food and put it on a plate but I have to retrain myself to stop eating when I’m satisfied and not stuffed.  I have to redo all my recipes and bring out new ones.  I meet opposition from my husband and kids on the new recipes because they are new foods and some of the rich flavor is taken out and replaced with something different. 

I have to contend with horrible cravings for greasy, fatty, sugary foods.  I don’t know what causes them but it’s a big sabotage. 

I don’t lack reasons for wanting to lose weight.  I want to feel better about myself and right now when I look in the mirror I’m not getting that at all.  I want to be healthier and have less pain.  Of course there is the big motivator of looking better in a swimsuit, especially since we wear them all the time in Hawaii!

I think what is so frustrating is the fact that my activity level is pretty good and it has increased exponentially.  I am a hiking. biking, yoga fool and still the scale doesn’t budge. 

Over the last 2 weeks I’ve seen the scale creep up about 3 or 4 pounds.  I have always had some fluctuation in weight during different times of the month.  This month I felt bloated for about a week before my monthly cycle actually began.  I had been holding steady on the scale and while I want to lose weight overall I was feeling good about not gaining because I was feeling my clothes fit a little looser which made me feel like I was at least moving in the right direction. 

So, let me connect this with fibromyalgia.  People with fibromyalgia have issues with weight for several reasons.  The medications associated with fibromyalgia tend to increase appetite and give a person “the munchies”.  Activity level is affected because of the pain associated with the disease.  Irritable bowel is a factor in fibromyalgia.  I experience all of this. 

I know the best solution to weight loss is to cut fat and calories over the long-term.  But like most people who struggle with weight I have trouble doing this long-term.  I lose the weight and then I get lazy and gain it back.  The older I get the harder it is to get the weight off. 

Again, like other people I’m always looking at the latest weight loss strategies and products.  There are so many things out there that claim to help with weight loss but a lot of them are stimulant based.  Ephedra was taken off the market but that hasn’t stopped these companies from putting other stimulants, such as caffeine, in their place.  Other products claim to block fat absorption, but with that comes a whole new challenge.  Often times these things block fat from being absorbed which is great, but they also tend to cause diarrhea because the fat is pushed through the system. 

In our society we all want a quick and easy solution.  We all want a pill that fixes everything.  Everyone is busy these days so something that fits our lifestyle is a must.  That’s why things like “nurtisystem” or “jenny craig” are so popular.  They take the work out of dieting.  But, they come at a price. 

What has worked for me in the past has been “weight watchers” or “spark people”.  I love that there are plenty of recipes that will taste almost like what I’m used to.  I like that they keep me accountable for what I am eating.  Both programs are based on calorie counting and, while they are labor intensive, they are the healthiest way to lose weight.  Because you’re counting calories you learn what a portion really looks like and both programs focus on behavior modification and that really is the key to long-term success. 

Jealousy is definitely a factor.  I’m jealous of the people who don’t have to work to stay thin.  And I’m jealous of those who have the discipline to stick with a program.  I wish there was an easy answer but I’m afraid there isn’t.  

What works for you?

What holds you back? 

How do you feel about all of it?

What can I do?

I know I’ve only been applying for jobs for about 6 weeks now.  I’m used to finding work right away though.  Having to turn down HPH is weighing on me.  I know the job market is tough right now.  I know I can’t overdo it or I’ll lose other things.  Networking is key and networking when you’re an outsider is next to impossible.  Plus I tend to stay away from a lot of social situations. 

I have found a new love in diving and sometimes I think maybe I should explore that angle of things.  Then I think about all the time I spent getting my nursing degree and I get discouraged.  I worked so hard and so long for it and now I can’t even find work!  Part of me says that life has just thrown me a curve ball and I should follow my heart but part of me feels like its criminal not to do what I went to school for. 

Just because I understand it doesn’t mean I have to like it.  I found a listing I want to apply for and I can’t even apply for it because they won’t accept applications by email and I can’t get to the website!  Why does the government have to make life so difficult?  Applying for government jobs is so complicated!  They need this document or that and if you don’t send just the right thing they won’t even look at you.   Ugh!

Don’t get me wrong I stay busy, there’s plenty to do around here.  The house would cease to run if I wasn’t here.  If I didn’t pay the bills and take care of all the household business no one would.  I was just telling this to John last night.  He thinks that cars magically register themselves and bills magically pay themselves.  And then he walks on my like I was the ground.  I feel like everything he says lately is derogatory.  I feel unappreciated and frustrated. 

I’m feeling bad about my weight too.  I have gained about 5lbs in the last month and it makes me mad.  I try to eat healthy but I have horrible cravings for greasy and sugary foods.  I try to offset it by exercising ever day but it’s not working.  I don’t like to look in the mirror because I’m fat and I know it.  I know that even if I lose weight I will have to struggle to keep it off every day.  Just another thing that will always have to deal with. 

I’m feeling isolated also.  I lost my hiking buddy and I feel like I am on my own most of the time now.  I don’t blame people for not wanting to be around me and I know everyone has their own life.  But I still feel like the friends I do have don’t really have the same interests or are too busy to hang out.  I ask people to do stuff and they always seem to be turning me down. 

Yes, I know wallowing isn’t helping anyone but can’t I have just a little pity party?  Just because life sucks sometimes I’ve been having more soreness lately too.  I attribute that to pushing the envelope a bit this weekend though.

Balance and Sacrifice

This morning I got a call from Hawaii Pacific Health about an EKG tech job.  This was the first time I have gotten to talk to a real person over there about an actual position.  Up to this point I have been applying for multiple positions just to get as much exposure as possible. 

I had a lengthy conversation with the woman on the phone.  She told me about the position and it sounded pretty good.  I am in a good position to take something like this since I came out of nursing school ahead of the pack.  Most nurses don’t know how to read an EKG strip very well.  They might know some basics but not the in depth things that I learned in paramedic school.  That’s probably the first time that being a former paramedic has actually worked in my favor. 

After we talked about what was involved she started suggesting that she would talk to another manager about me and perhaps get me moved to the top of the pile down there for another position.  Like I said she was really nice.  I asked what the hours would be and she said they would be 6-630 either days or nights 3 days a week.  Ugh, bummer. 

Maybe I shouldn’t have been but I was honest with her.  I told her I really didn’t think I could pull that off.   I told her everything.  I don’t know why it just felt like the right thing to do. 

Today was a turning point for me.  I was faced with a tough decision.  Do I move forward and take a position where I would cause myself stress about daycare and how the kids would get to school on top of what stress the job would bring?  Or do I take a step back.  I felt my heart sink when I said I didn’t think it would work.  It’s important to me to be honest, with myself and with others.  She didn’t need to know that I have fibromyalgia but I felt it was the right thing to tell her. 

I saw this coming in a way.  I know that hospitals work 12 hours shifts and a part of me knew that it would be next to impossible to make that work with my family.  So, today I made a painful decision to put my family and my health first.  By doing that I acknowledge on some level that fibro will take part of my career. 

This is my new reality and I can’t burn the candle at both ends anymore.  I don’t have to like it but I have to live it.  If I didn’t have kids it would be different because I could just come home and collapse.  But I do, and it’s not right for them to give up their mom.  If my husband wasn’t in the military maybe he would be able to help or maybe I would have more of a support system to help while I get through the first phase of my career.  But he is in the military and I don’t have a support system here.  I can’t be upset that he’s in the military because it puts food on the table, clothes on our backs and a roof over our heads. 

I wouldn’t change having my kids.  No mother would.  It’s a reminder though, that we, as women, tend to sacrifice more than our male counterparts.  I don’t know if it’s fair but, again, its reality. 

I hate that I spent the last 5 years in school and just as I start a promising career I’m hit with a chronic disease.  I hate it more than anyone could know.  I want to work.  I have to fight the part of me that says “do what you have to do to be a productive member of society”, because I’m not lazy I want to work.  I have a better work ethic than a lot of people. 

Now my task is to find a job in nursing that will enable me to use my knowledge to help others but that I can manage.  I don’t know how long that will take nor do I know what form it might take.  Maybe I should look for other types of work.  Maybe I should submit but the fighter and the Irish in me won’t let me.  I have days when I feel defeated but I have to pull myself up and keep walking because someone has a plan for me.  All I know is that today’s phone call cut deep, really deep.  It was a decision that almost caused physical pain.

What’s the moral of the story?  Just in case you didn’t already figure it out, this post is about the things Fibromyalgia has taken from me.  But it’s more than that.  It’s about the things Fibromyalgia has given me.  I’ve gotten a rude awakening, a slap in the face.  My body literally rebelled against me.  Four months ago I was in a flare that I couldn’t see the other side of.  I learned lessons on how to control that pain with a variety of approaches.  Now that they are working and I’m ready to start adding things back in I’m learning new lessons.  I’m learning balance and that it’s not a sprint its a marathon.  I have to work smarter not harder.  I have to ask for help and learn when to say no or pay the price.  The price is too high, I’m not willing to sacrifice my health and my family for a career.  I would not have said that 6 months ago.  I would have told you that I would do whatever it takes to get my career going because I’m passionate about nursing.  I’m still passionate about nursing, that hasn’t changed.  Some of what I’ve learned I have learned from the disease and some of it from the place I live.  Slowly I’m learning that its ok to say no and that people actually appreciate when you are honest with them.  I don’t want to be an unreliable employee any more than they want to hire one so I have to be real.  Being real isn’t always the most fun. 

So, take the time….its worth it.

The Fibro Factor

Everyone knows by now that I actually write 3 different blogs.  That’s because some people may want to hear about different aspects of my life.  That being said, if you like you may read the details of the job interview here. 

When a person with Fibro, or any chronic condition, looks for work it’s slightly more complicated.  There are health factors to consider.  Some people may need to work so badly that they have to sacrifice their health to keep food on the table.  I’m glad I’m not one of them. 

Fibromyalgia means I have to learn how to pace myself and I have to learn my limits.  I recall hearing about this from my Aunt Cathie, whom I admire greatly.  She has mentioned in passing things like “I decided to retire after collapsing at work several times”.  That’s amazing to me.  I can imagine it must have been beyond difficult to give up a career I know she loved.  But it was necessary, of that I have no doubt.  And then I can imagine how hard it would be to find other things in life that would be as fulfilling.  She is an amazing woman, and though I can’t comment on the journey I know she didn’t lose in the end at least not from my standpoint.  She’s still a caregiver and she knows he limits, though she isn’t always good at setting them.  

I am still a bit angry that I have to give anything up.  It’s not fair, but it is what it is and I have to do what’s best for my family.  So instead of saying “give up” I now prefer “re-imagine”.  Two years ago I would have told you that I would work on a mother-baby unit eventually and that I planned to start with Med/Surg. 

Since then lots has changed.  Not all of it with my health.  I never imagined how competitive it would be to get a job.  Nurses don’t come out of school ready for the ICU, they never have.  You need training, and getting it can be tricky these days.  A lot of nurses end up getting hired on where they did their clinical time.  I only did 3 days and then I moved off the continent to a little island chain.  Once I got to the islands I was at a disadvantage because I’m a Haole, and because I didn’t go to a local program.  I couldn’t control all of this so I’ve been trying to make the best of it. 

Then there was another blow dealt by pain.  I sought help for my pain about a month before I left my job.  One day I went to the doctor for severe pain, when we were still trying to find the exact cause, and I was told I wasn’t likely to improve because of my stress from my job.  That was the beginning of the end.  Things at work were already tense and the pain just made that worse.  Being told that I wasn’t going to get better without cutting down on stress pushed me to make a decision to leave my job.  It was the right decision no doubt in my mind. 

After leaving my job I didn’t immediately feel better, in fact, for a while I felt worse.   But, had I kept my job I would not have been able to go to work much longer with the pain.  I wouldn’t have had the time to attend all of the ensuing doctor’s appointments and I may still be struggling to get diagnosis even now.  I needed that time and freedom to not only feel better physically but to come to terms with my diagnosis and the changes it would bring in my life. 

So where am I now?  I’ve got my priorities straight.  I needed to be slapped in the face with a chronic illness in order to realize I can’t have it all.  I was trying to figure out how I would work 12 hour shifts in a hospital when I have 2 young children that need to be taken to school daily.  So I needed someone to take them since my husband and I wouldn’t be able to do it.  I had that worked out for a while but it fell apart when my carpool moved to the mainland and my 5am babysitter didn’t feel well.  Then I had a stop-gap plan but that became too much for that friend.  So the reality is that I have to be able to take my kids to school and whatever job I get will need to allow that.  That right there rules out hospital work.   

Traditionally, hospital work is 3 days a week 12 hour shifts.  But there is always overtime it’s almost guaranteed.  If your replacement doesn’t show, legally, you can’t leave.  That’s something called abandonment and it’s grounds for a lawsuit.  So employers can mandate you to stay.  I have to be realistic, I can’t do it.  Being on my feet all that time would be ok if I could just come home and collapse, but I can’t.  My kids need me to be their mom and asking them to give up mom to a career isn’t fair. 

At least for now, it’s not an option.  I don’t like operating with a narrow focus because I would like to gain experience and that requires paying dues and doing that shift work.  There are other options and I have to face the music. 

I have to face the reality that I may never do hospital work.  I may not ever be up to it physically even when my kids get older.  So I have to re-imagine what I want to do with my career. 

I never wanted to work with old people.  Honestly, they smell bad.  As people age the become incontinent, get bad wounds that take a long time to heal, have horrible breath etc etc.  What I have learned is that my compassion for the person overrides the smells.  I discovered, through my first nursing job, that helping someone die can be just as important as helping them live.  End of life care as it’s called is an exploding need.  Everyone deserves compassionate and competent care.  And their families deserve the peace of mind that comes from knowing their loved one is getting it. 

So how does this solve my problem?  Simple, I can work at a nursing home and only work 8 hours a day or part-time.  I can work in home care and go into people’s homes to provide care.  I can work with hospice.  And perhaps best of all, I can make my own schedule. 

I still don’t know if this will be forever or not.  I don’t know if it will lock me into this area of nursing forever.  I still want the same things I wanted before.  But, just like I child, I have to accept that I don’t get everything I want.  I’m not ready to rule it out, but I am ready to do what I can with what I have.  The more advances made in medicine the longer people are living, and those people want to live and die in their homes.  They have a right to that and home care and hospice fill that need. 

I’ve had my horizon’s broadened in a big way.  As a former Paramedic my knee jerk reaction is to jump in and save a person.  But that’s not always what’s best.  Sometimes it’s better to let someone die in comfort than it is to keep them alive in discomfort.  In April of 2011 I learned this first hand through my grandmother.  She had a major stroke and it took her ability to speak and eat.  She could open her eyes and look at you but all she could say was “yup”.  She lost the use of her right side and became dependant on others to care for her.  Once it was evident that her condition was not reversible my father was presented with some impossible decisions.  At one point he was struggling and I asked him to read me her living will and had to tell him “it’s pretty clear what she wants dad”.  I had to tell him that we couldn’t be sure that when she said “yup” that’s what she meant.  He had to make a decision not to let the doctor’s insert a surgical feeding tube called a “g-tube”.  She eventually left the hospital and for a while she did ok at a nursing home, even eating puree food and thickened liquids.  But that’s not really quality life.  The staff told my mother and father to bring pictures for her to see.  I don’t know if this was to keep her spirits up or if it was an experiment to see if she knew who these people were.  As it turned out she didn’t.  When my mother showed her a picture of my cousins and told her that they were “Deb’s kids” she got a puzzled look on her face.  My mother responded by asking her if she remembered that she has a daughter, Deb and she shook her head no.  We don’t really know if she really forgot my Aunt.  I imagine when my Aunt visited she knew her, but I don’t really know.   

When she entered the nursing home all of her daily medications were stopped.  This made it only a matter of time before she had another stroke because she took a blood thinner for a heart condition.  I don’t know if my dad knew it but I did.  I remember telling my dad that she had made her wishes clear when she was of sound mind to do so and it should be honored.  It was drawn up a long time ago.  But in her later years she had Alzheimer’s disease and she was very forgetful.  She needed help and I could tell she struggled with it.  It was hard for her to admit she needed help.  The first stroke took her quality of life.  A few weeks later a second stroke put her in a coma and after that it was only a matter of time.  She was 85 and she died on her terms.  And that’s invaluable. 

Allowing a person to die with dignity and assisting the family members during this time is life changing.  And I now know first hand how important it is.  Maybe experiencing my grandmother’s illness and eventual death lead me to a whole new career path.  And that is why I love nursing.  From bringing life into the world to watching it end and everything in between nurses are needed. 

You didn’t need to hear all that but it’s part of my story.  Fibromyalgia has shifted my focus and my experience has shaped my life.  So even if I never work on a mother-baby unit and I spend then rest of my career caring for the dying I will be fulfilled.  I will have an impact on people and I will be a caregiver.  I may not take the traditional path or the one I first thought but everything and everyone has a purpose.  Fibromyalgia or not I have one too.