"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: work and chronic illness

Accepting Chronic Illness

I am tired.

For those who know me, that is not a surprising statement to hear. After all, I have a chronic autoimmune illness; one where fatigue is one of the most prevalent symptoms. Tiredness is as much a part of my daily life as food and sleep. Most of the time, it’s a given.

But lately, my tiredness is more than physical. It’s mental, emotional, and spiritual. It’s the type of tiredness that makes me want to stop fighting the daily battle of living with Sjögren’s, and the host of other medical issues, that have plagued me over the years.

Is it tiredness?
Or is it depression?
Or grief?

The label isn’t important to me. Actually right now, there’s not much that is important to me because all I want to do is sleep. Or veg out in front of the TV for days at a time. I get fleeting moments where I see a glimmer of my usual self – the self that enjoys the living hell out of life on a daily basis because she knows that life is short. And precious.

There are also moments, hours even, where I can put on a smile and appear to the outside world as my usual self. I reserve my energy for this act when I am with people who really matter to me, because I cannot help but think that those precious people deserve so much better than a morose, down-in-the-dumps shell of a person.

Or at least I did think that. Now I am beginning to wonder, what would be so wrong with being myself all the time and letting people really see me? All of me. Why do so many of us feel this burning desire to pretend? To be who we are not in order to protect our loved ones? When you live with a chronic illness day in and day out,there is only so much energy to go around. Do we really want to waste any of it pretending we are fine when we are not??

Many of you know that last September, I started a new part-time job as a school nurse. It was my first venture working regularly since I went out on disability in 2008. I had been working as a substitute school nurse for about a year and a half and I wanted to push myself to advance to working part-time, fourteen hours a week. Surely that was manageable I thought.

It wasn’t.

There were a lot of extenuating circumstances during my new employment. My gallbladder gave out on me and I suffered for months before I finally went in for surgery. I was also working towards my school nurse license, which took a lot of my energy and time. I was experiencing neurological symptoms and then a worsening of my pain and fatigue issues. For a variety of reasons, I found this new place of employment MUCH more stressful than my other job where I sub at. I enjoyed what I was doing at the part-time job, but the price I was paying physically was no longer manageable. Actually, it was never manageable. The only reason I made it all the way to January was because I was so damn determined to succeed.

That’s really the root of the problem: my drive to succeed. After going out on disability, I spent YEARS trying to figure out how I could get back to work in some capacity. While out on disability, I started a blog and wrote a book. Some people would call that working but honestly, I do not make a living doing it. And then when I did start working out of the home (as a substitute school nurse), I spent even more energy figuring out how to work part-time on a regular basis. But that wasn’t going to be my end point. I had a plan. I was going to gradually build up to being back in the workforce full-time, and nothing was going to stop me.

Especially not Sjögren’s!

But it did. Despite a WONDERFUL three week run on prednisone around Christmastime, it all began to unravel for me physically and I made the decision to give my resignation with the caveat that I would still be interested in subbing at this school as well.

I was struggling so much in the weeks leading to my last day that when my last day came, I felt nothing but relief. However, I wasn’t prepared for all the realizations that would come with leaving a job that I had worked so hard to get.

Looking back, it’s obvious to me now that with my medical needs, this particular job was not the right match for me. But I also realized that no matter how hard I pushed and how badly I wanted to succeed, my illness was not going away. I think that a part of me thought that as long as I TRIED hard, it would all work out. My symptoms would become more manageable. I just needed to stay positive and optimistic. I just needed to do more self-care to make my work days more doable. I needed to have faith in God and then I would succeed.

That’s the way I have always managed having Sjögren’s syndrome: I stay upbeat and I always continue forward, constantly trying new treatments and working on ways to manage my symptoms. Be courageous. Be brave! Don’t give up. Keep your chin up!

No longer.
Or at least, not right now.
Because I am so damn tired.
And oftentimes, chronic illness is just a bitch.

I have been living with Sjögren’s for at least eight years now. I do what I’m supposed to do to manage my illness. I do what I NEED to do. So in some ways, I have accepted my illness. But I am now beginning to understand that I have not truly accepted my illness. Not really. I have still been clinging to the hope that I can overcome it and go back to living a life similar to the life I was living before those first symptoms appeared. Leaving my job has helped me to see that it is good to push your limits and to have goals, but there is also something to be said for accepting yourself for exactly where you are at in any given moment.

This brings me to now, this day. A day in which I woke up in the morning and the first thought I had was that I wish I hadn’t woken up. Because lately, waking up means facing another day of challenges that drain the living hell out of me. I have to force myself to not snap at people. I cry at the drop of a hat. It’s hard for me to be around people because they are not going to say what I need to hear. What do I need to hear? I need to hear that it is OK to be sad. It is OK to want to lie in bed all day and not want to do anything. Maybe not forever, but at least for a little while. I need to hear that it is OK to mourn the person I used to be. Because let’s face it, that woman is gone. I don’t want to hear that I can do anything I set my mind do because the reality is, I cannot. Maybe, at the end of the day, it’s not so much about what I need to hear from other people, but rather, what I need to hear from myself.

Maybe acceptance and living with a chronic illness is less about being brave and more about being authentic. I think for me, true acceptance would mean being OK with where my body and mind are at on any given day, without judgement from that inner critic that says I need to be better. Or stronger. Acceptance would mean valuing what my body can do and not what I wish it could do. It would mean finding a way to live in a state of grace no matter what physical challenges lie in front of me.

Authenticity.
Acceptance.
Grace.

Work and Chronic Illness

I posted a status update on my personal Facebook page this morning and I realized later on in the morning that I might gain some insight by posting it here as well.

I’ve been wanting to do some blog posts about work and chronic illness and I’ve wanted to write a little about my new job, so I guess this is as good a place to start as any.

As I’ve mentioned previously, I am in the homestretch of a very challenging and difficult month schedule wise. I am really hoping, that things will settle down a little for me once we go into November. I am definitely not getting the recovery time I physically need right now.

That got me to thinking this morning. I typically work two days a week for a total of fourteen hours. I also sometimes work a third day at my substitute school nurse job although lately that is rare. I am working three days this week. I honestly don’t understand how people with chronic illnesses like Sjogren’s (or any other illness) work full-time. I say that because all along that has been my ultimate goal: to get back to a full-time nursing job. I started with subbing, now I work part-time, and I was hoping full-time would be doable within the next year or so.

As of today, October 26, 2015, the full-time gig will not be happening.
No way.

Now I know I can’t see into the future but honestly, the part-time stuff is physically kicking my butt. I know the fact that I had to come off the low-dose naltrexone, which helps treat my Sjogren’s syndrome, isn’t helping at all, but the kind of pain levels and fatigue I have experienced since starting the new job is off the chart. Just for two days a week! Plus, all the other stuff.

That is why I am curious to see how things are going to play out as we head into winter. Right now, I am finding it incredibly difficult to manage the ridiculous amount of medical appointments I have with working regularly. Not to mention the daily care that is required for my eyes, mouth, and other symptoms. I’m still trying to figure out how to fit in healthy cooking and exercise because right now, both have gone to the wayside. So, I am reaching out to my readers.

While I think that I am an organized person, I will reaching out and looking for suggestions on how to manage a chronic illness with going back to work. Please feel free to add your suggestion(s) in the comments section below.

Sjögren’s and Fatigue

A few days ago, I posted a status update on the Thoughts and Ramblings Facebook page asking those with Sjögren’s/chronic illness if they could pick just one symptom to get rid of for the rest of their lives, what would it be. I knew what the answer would be for me, which was going to be the basis for this blog entry, but I wanted to see if others with Sjögren’s felt the same way.

I was taken aback by how many responses I received with that poll and it was clear to me by the responses that fatigue was the clear winner; which is also the case for me. That relentless, brain-numbing fatigue that most people without a chronic illness typically cannot understand.

There was an article put out by the Sjögren’s Syndrome Foundation last year that for the first time I have read, did an excellent job of describing the different types of fatigue encountered by those of us with Sjögren’s syndrome. The title of the article was: 13 Types of Sjögren’s Fatigue by Teri Rumpf, PhD. The article does and excellent job and you can read it by clicking on the article title link above.

For me, as for so many of us, the Sjögren’s related fatigue that comes with this illness is often the most debilitating symptom we have to deal with, day after day, week after week. It affects every single aspect of our lives and even worse, fatigue is often misunderstood not only by the other people in our lives, but also by our medical providers. It is one of those invisible illness symptoms that is usually not outwardly obvious to other people. Or on the flip side of it, people think they do understand what the fatigue is like because they too have experienced “tiredness.”

I’m here to tell you that illness related fatigue is nothing like being tired.
Nothing.

I remember the days, before I became ill, when I worked as a registered nurse on a busy pediatric nurse, often on my feet for most of my twelve (more like thirteen-fourteen) hour shift and then commuting an hour each way to work. I remember the years I worked the night shift and could barely remember my drives home because I was that tired. Exhausted is probably a better word.

But fatigue is different for me than tiredness or exhaustion.It is that feeling that I physically cannot take another step, even if my life depended on it. Sometimes it is predictable and sometimes it is not. An example of this is that if I work two consecutive days at my current job, it is pretty much guaranteed that sometime in the following forty-eight hours, the fatigue will consume me. That is predictable.

An unpredictable example is going out with friends on a weekend evening, which happened to me recently. I had made sure I got enough rest for twenty-four hours before we went out. I was in good shape for the first few hours, but halfway through a concert, at an intermission, the fatigue hit me like a freight train and I almost actually fell asleep during the intermission while sitting in my chair! I really thought I had my bases covered, but that night, the fatigue won.

And that’s the problem, many times the fatigue does win. It very much affects my work life, what little I do have of one. It affects all my personal relationships and definitely my social life. And, it is frustrating as all hell. Because when you are fatigued, everything else is worse and I mean everything. It impacts my pain levels, my other physical symptoms, and definitely my ability to cope. It contributes to anxiety and depression and overall can cause a feeling of hopelessness.

I would say that fatigue is probably the issue I have had to work the hardest at and it has taken me the better part of the last seven years to do so. Working on it doesn’t mean I can get rid of it, but it does mean that I am able to live better with it and improve the quality of my life. It means that even though I hate it with a passion, it does not always win. And the times it does, it does and I move on.

There are a few strategies that I have used to help me manage my fatigue more effectively. One of the most important is planning ahead of time and prioritizing. Planning meaning not just my activities, but my rest as well. That is hard for me because when I am feeling less fatigued, I want to get as much done as possible. However I have found that for me, the fatigue is cumulative and rest periods every day are critical in managing it.

Another important component to managing my fatigue is diet and exercise. I cannot emphasize this enough. And oftentimes, I need to emphasize this even with myself because it is an area that I can easily neglect. I have found a significant improvement in my fatigue levels when I exercise three to five times a week and cut out processed sugar, gluten, and processed foods. The exercise doesn’t even have to be much, maybe a fifteen minute walk or a half hour of gentle stretching. I just have to move my body.

I also need to listen to the fatigue. When its here, its here. Yes, there are some things I have to push through, like finishing a shift at work. But otherwise, I listen to my body and give it the rest it is screaming for. I find that most times when I do this, I recover more quickly than if I did not listen to my body and kept barreling through my day.

Lately, my fatigue has been more manageable for me and while I know that how I manage it is a crucial component, I have also been finding some relief lately since being on a steady dose of low-dose naltrexone (LDN) and increasing one of my thyroid medications. I always encourage people to talk to their doctors about checking their thyroid and also exploring any other possible causes of fatigue such as adrenal exhaustion, etc.

What techniques and management strategies have you used to help manage your illness related fatigue?

Being Visible With An Invisible Illness

This week is National Invisible Awareness Week and I figure it is as good a time as any to get back to writing since apparently, my last post was a month ago. I have no good excuses. Life has been busy, and I have been enjoying living it.

I won’t get into all the details about why I have been busy; some of it has been simply having fun and some of it has been being there for other people or personal obligations. Whatever the reason, the past week or two has been more of a struggle physically than I am comfortable with. That’s the thing about an invisible awareness: I struggle every single day, almost no exceptions. I have done a pretty good job at working those struggles into my life and accepting them, but the problem with that is, I appear completely fine most of the time on the outside. When in actuality, my body is falling apart bit by bit on the inside.

It’s a double-edged sword for most of living with an invisible illness. For example, I do not want to be known as or come across as a “sick person”. I try to take care not to complain too much on social media and I make a very noble effort to not cancel out on plans when I am not feeling well. However the problem with this is that people forget that I do have limitations. Because I am trying so hard to make the life I do have count for something and to not waste too many of my days, I even forget that I have limitations.

As I have written about previously, I went back to work last Spring in an attempt to get back into the nursing profession. I work in a school as a substitute school nurse and had the summer off. Once I am back to work, I absolutely have to back off on all non-work activities and watch my stress in order to avoid a flare-up in my symptoms. My experience with working thus far is that for every day I work, I need at least two days to recover. Between the joint pain, muscle pain, eye issues, fatigue, and brain fog, sometimes one day of work feels like three or four days. And to be honest, it is worth it. I enjoy being back to work that much.

That is a huge reason why I have been so busy lately; because I knew I would likely be getting called soon to go into work and I wanted to do some quality living before that happened. Not that I don’t enjoy myself the rest of the year but like I said, it needs to more limited and thought out.

So this past weekend, I knew I wasn’t doing all that great; the fatigue was overwhelming, to the point where I would cry in the car on the way home. And the fatigue felt much worse than what I’m used to and I knew something wasn’t right. But, I followed through with my commitments, had some fun along the way, and sure enough, all hell broke loose: migraines, sinus pain, ear pain, joint pain, and chills. I forced myself to go to my water aerobics class Monday morning and almost passed out. I started treating myself with decongestants, acupuncture and a neti-pot, with some relief, until my asthma acted up the worst it has in years, on Tuesday night. Two times using my rescue inhaler and I knew I was doctor bound first thing this morning.

What is wrong with me in itself is not a big deal. I have something viral (if I am not better by Friday, I go on antibiotics) that is affecting my sinuses and subsequently, my lungs, which were not moving as much air as they should be. Any type of infection always flares up my autoimmune symptoms, especially the fatigue, and it gets more complicated for me than for many other people. A steroid nasal spray and a steroid inhaler should hopefully fix me up quick. I am really hoping to stay off oral steroids as I just passed the six month mark of being off them and let me tell you, that is a rare occasion indeed. Granted, my life might be easier on them, but since I have already started to develop some minor long-term complications from them, they are a last resort.

To be honest, I wasn’t being as careful as I should have been. Not just because of my schedule, but because this time of year is ragweed season and I have a severe allergy. Despite my symptoms, I was depending on one allergy supplement (which apparently wasn’t managing things) and allergy shots, and hence the sinus/lung issues emerged. But isn’t that almost a good thing in a way? Instead of spending every day thinking, worrying, and dealing with every little physical symptom that crossed my path, me and my invisible illness were taking advantage of opportunities in a very visible world.

There is something very important I have learned from all this. Nope, it’s not about balancing your life with a chronic illness. Believe it or not, I already learned that lesson a while ago, even if I don’t get it right some of the time. I have learned that since I have to live with this illness the rest of my life, and most likely will not see a cure in my lifetime, that I have to make sure to do this one thing:

I have to live my life.
Now.

I have to take advantage of all the days where I can get out of bed more easily. I have to stop worrying about when the next big autoimmune crisis will come. I have to stop worrying about how clean my house is, especially when there is some better way to spend my precious energy. While I cannot ignore my illness, it is important for me to sometimes act “as if”…act as if I am not sick…act as if I can do anything. Because honestly, sometimes I think having this illness is more mental than physical. I see that in myself and I see it with others who battle this illness every day.

So if you are reading this and you do have some type of chronic illness, try to be more visible, Do something, anything. Educate people around you about your illness. Sit in a library and read a book rather than by yourself at home. Talk to people while you are waiting in line at the Social Security office. Take a risk and go away from home overnight without ruminating over all the “what ifs” that can happen.

If you are reading this and you do not have some type of chronic illness or health issue, I will admit, I am a bit jealous. I get especially jealous of people who are healthy physically and mentally and then don’t take advantage of their good fortune. Stop wasting time over the drama around you. Get outside. Volunteer to help those less fortunate.

Live!

Finding My Way Back To Nursing

My entire life I have have either wanted to be a nurse or have been a nurse. I don’t remember the exact time and place of when it became so apparent to me that this is one of the things I wanted to do with the rest of my life, but I do remember the desire being there from an early age. My mom is a registered nurse (RN) so from as far back as my toddler days, it was ingrained in me what a noble and worthy calling this profession is.

I graduated from UMASS Amherst in 1993 with my BSN and proceeded to work several different nursing jobs over the course of the next fifteen years. I worked on an inpatient adult psychiatric unit, I worked for a home care agency jumping around from the psychiatric specialty to adult medical surgical, and then finally, into maternal child health. My dream job came though in 1999 when I began working as a pediatric nurse at a children’s hospital. I would stay there for ten years, working on the same unit, day in and day out.

My last day of work there was November 8, 2008 and I was officially “let go” in March 2009. I use the term “let go” because I don’t know what else to call it. I wasn’t fired as I had done nothing wrong; I was an excellent nurse. I didn’t quit either. However, my autoimmune battle had been going on for over a year. I had used up all my sick and vacation time. I was on short-term disability, but since I had used up my allotted FMLA leave, which in Connecticut is a generous sixteen weeks, my job was no longer legally protected. So if you don’t think it can happen to you, trust me, it can. No job and no health insurance. I was fortunate to be making sixty percent of my income on short-term disability. When I asked if they could hold my spot at the hospital, I was told they could not because my position as an admission nurse needed to be filled to provide optimal patient care. I could reapply for a job in the future, but I would start all over as a new employee and I would lose my ten years of seniority in regards to my pay scale, etc. I found out later that my position was never filled.

Over the course of the next several years of battling Sjögren’s syndrome, I could not work at all, nevermind as an RN. I was devastated in 2010 when, while being evaluated for SSDI, a medical professional told me I would likely never work as an RN ever again.

Life over.

But as you all know, my life was not over. I became a writer and even though until very recently, I was not earning any income from it, it felt like a calling to me; in a different way from being a nurse. But, I always missed nursing. I didn’t miss working the 36-40 hours/week as I knew my body could not withstand that type of physical activity, no matter in what capacity. However as I started to learn ways to cope with my illness and as I found different alternative treatments to help manage my symptoms, I couldn’t help but wonder if someday, I could go back to doing some type of nursing again.

Around 2012, I started seriously investigating different types of nursing jobs and what kind of schedule I might be able to work once I was physically able to do so. I pretty much came to the conclusion that due to the unpredictability of my illness, working any type of set schedule would be impossible. Hence, partly why I was deemed permanently disabled by the government. But, I came to the conclusion that I was never going to let this be permanent. I was going to work someday, somehow, as a nurse again.

Between 2012-2014, I continued to work hard on getting some of my symptoms under control and by the end of 2013, I had made a decision that trying to find a job as a substitute school nurse may be the best path for me to take. I had never worked as a school nurse before and since the day I graduated nursing school, I have always wanted to. However back then, I needed the pediatric experience and then once I got that, due to personal circumstances, I found it impossible to leave my hospital salary for one of a school nurse. Now though, my situation was completely different and I had learned the hard way the importance of choosing happiness over money.

I started scouting local job postings with the intention of applying for a job starting in the fall of 2014. However with all the hoopla of Tales from the Dry Side being published and all the marketing I had to do, it made me realize that I was ready now to embark on this challenge. I was physically ready to take on the responsibility, or at least try. I had also been scouting local school websites because I was looking for a smaller school district. It had been 5 1/2 years since I had worked and I didn’t want to overwhelm myself, especially since stress is the fastest way to aggravate my symptoms.

I came across the website for a small town adjacent to the one I live in and it said they were always accepting applicants for sub nurses. It was interesting that I found this the same day that I was going to apply at two other school systems. I called, spoke with the nurse leader, and scheduled an interview.

I never sent in my applications to the other two school districts.

I knew within five minutes of my interview that this was the place for me. I cannot quite put my finger on it, but I loved my supervisor and I met one of the school nurses, who happened to be a former co-worker of mine from my former home care days. Seemed like it was meant to be I guess you could say. I was hired and finally employed after 5/12 long years.

I had three days of orientation, working in each school with the regular nurse. After that, my schedule varied. Although I am a sub, I often get pre-scheduled for days when I don’t have medical appointments, etc. I probably average about three-five days a month between the three schools and that is perfectly acceptable to me. Once in a while I will get a last minute call to come in and work, just as any other substitute does. I have learned to start scheduling my medical appointment first thing in the morning or late in the afternoon so that i can be more available for these last minute calls, but it is still a work in progress.

Going back to work has been one of the best things I have ever done for my illness. It has also been one of the hardest. The rumors about a school nurse job being easy are completely untrue. They work hard. I work hard. First off, as I mentioned, I have never been a school nurse and it is a completely different animal than any other type of nursing. My acute care experience has been a huge asset to me and I was surprised, after so much time, how easily it came back to me. However your approach is very different. These are not sick kids coming onto your turf so to speak. They are relatively healthy kids and you are in their environment. Granted, there are some kids with chronic illnesses that have special needs, but still, it is very different.

The change in nursing specialties has meant a lot of time online researching situations that I am not as familiar with. It has been a big learning curve for me and with that, has come some stress and anxiety. Trying to retain all this new information and learning the ropes for three different schools in a short amount of time is exhausting when you already experience unusual fatigue on a daily basis, as well as pain, issues with your eyes, etc. My days at work are very unpredictable. Sometimes I feel like I am running a walk-in clinic or a little mini-emergency room and I need to be on my game. There have been days where I have woken up and checked in with myself because of how lousy I feel. The question I have to ask is: will this just be very hard for me or will I not be a good nurse today? So far the answer has always been: it will just be very hard for me. I have continued to be the incredible nurse I have always been, disability and all.

So how do I do it? How do I move past the pain, fatigue, eye issues, organ complications, etc. to physically get through a 6 1/2-7 hour day? Well to start with, I am a substitute. Going back to work has made me realize that although I am striving for a goal of being able to regularly work part-time, I don’t ever see myself working full-time. It takes a lot of preparation and recovery for me to work one or two days in a week and I do look forward to the weeks where I don’t work at all because my body needs a break. Besides medical appointments, nothing else gets scheduled during the week, and sometimes that even includes weekends, if I know that I will be working. I always make sure that I have appropriate lunch foods ready to go in the fridge and clothes ironed in my closet in case I get called. I have gotten myself on a regular sleep schedule of 10pm-6am, which actually has done a lot for my insomnia.

Since I usually have a heads up for when I am going to work, I do nothing but rest most of the day before and it usually takes me one-two days to recover. It has meant missing out on some social activities, especially in the evening. If I happen to work back to back days, which does happen from time to time, my whole week is devoted to just work, making meals, and rest. I keep waiting for it to get easier for me physically. Stress wise, it has gotten much easier since I am now comfortable with each school, and have started to get to know the kids and how things work. But the physical aspect is a whole different story. I do not exaggerate when I say that I typically come home from work, let the dog out, change my clothes, go to the bathroom, and collapse into my bed for the rest of the day. I always have dinner prepared in advance or my husband knows he is in charge of dinner that night.

I also am able to work because I have a strong support system. My fellow nurses are such a great group of people, my supervisor is incredibly supportive, and I feel like it is a team environment. I have friends and family who keep cheering me in, especially in that first month when I was trying to get my body to adjust to being out in the workforce again after so many years away. I have this fantastic husband who rubs all my aching joints, makes sure we have clean underwear during weeks that exhaust me, serves me supper in bed, and tells me how proud he is of me. It all truly does make a difference.

I think probably the most important factor in how I get through my work days and why I keep working is this one simple fact: I absolutely love my job. Like head-over-heels love my job. I remember the first time I walked into the elementary school for my interview (I have never had kids in school!), looked around, and felt like a school was the best place in the world to be. So much learning, so much potential, so much LIFE! I love working with kids in a school environment; so many challenges and ever-evolving. I enjoy the different challenges in caring for a kindergartner versus a senior high school student. I love being able to help them manage their medical needs in order to maximize their learning potential. I love soothing a scared child. I love the one on one interactions that so often got neglected when working in the hospital. I enjoy the unpredictability of my day. I love knowing that I make a difference.

This job has ended up being so much more for me than a once a week or so obligation. It has been a chance for me to care for children again, to use my brain and my analytical skills, to be a part of the rhythm of life again.

My last day of work this school year was yesterday, approximately four months after I started. I know I don’t work forty hours a week, but I made it to the end of the school year without one sick day, although yesterday was a very close call! I am proud of that fact. For me, it is an indicator of how far I have come and the potential for how far I may be able to go.

So, happy summer to all!