Oct 12: The reality of fatigue

Tired.  Exhausted.  Weary.  Drained.  Fatigued.  Everyone has used those words at some point to describe how their body is feeling.  Generally it is from something physical, or after coping with emotional upheaval, be it job or personal.  For most it is transient, an unpleasant feeling that will pass after recovery, often just a good night's sleep will be restorative.  When said in the context of an activity it is considered to be something that you can 'push through'; if you are at work or studying and you feel tired you take a break, walk around or stretch.  For some it is a sign of weakness, something to not be admitted to or 'given in to', it can be overcome and dealt with by mental toughness. 

But the fatigue from illness isn't something that can be coped with by a 'quick fix', or by powering through.  I believe that I've addressed this in the past, but it deserves to be revisited, because for those who have never dealt with the tiredness from an illness it is difficult to fully comprehend.

Obviously the reason I'm bringing this up is because of my current state.  I am exhausted.  It has become overwhelmingly constant, not just a daily state of being but every minute of every day, the only change the degree.  I dealt with this before the surgeries, as well as during recovery.  After the last surgery it went on for years, literally.  But in the last few years it had become more predictable and was not as constant.  I could do a few hours of work or activity before it hit.  This isn't surprising, based on basic understanding of my physiology and repeated surgeries.  It was something the late Dr. Baughman expected I'd deal with for the rest of my life, due to a combination of factors.  But my energy has deteriorated to a level not seen for years with the advent of the autoimmune disorder.  It's being further complicated by the CPAP for the sleep apnea, as it remains that the quality of my sleep is improved, but I'm waking 2-3 times a night in pain/discomfort from the drying out of my eyes and mouth, exacerbated by the airflow from the machine that worsens the two issues while addressing the sleep disorder.

Over the last several years I've made dozens of adjustments to my life to accommodate a chronic condition.  The two most obvious ones were the decrease in my work hours and downsizing my house.  The work hour decrease began in spring of 2006 during the initial evaluations at Brigham which confirmed that I wasn't exaggerating, it wasn't just in my mind as the assholes at Presbyterian inferred, there was a real physical reason for the fatigue and shortness of breath that never went away after the first surgery.  Dr. Cohn decreed that I work no more than three days a week, only in the office.  Dr. Baughman told me that his prediction was that would be lifelong, which is why I knew disability was a probability at some point in time.  The house was twofold: decrease the amount of space that needed to be navigated on a daily basis and decrease overall cost by finding an income producing property.

But while these were and are the two most significant, there have been many other changes which are not as obvious, but have had a huge impact on my life.  The hardest to deal with has been the drastic reduction in my social life.  While many people disappeared, presumably due to not being able to cope with my chronic illness and pending death, many others faded away due to my not being able to give the basic attention that any relationship must have to continue.  It is difficult for most (if not all) of the people who interact with me to understand that it is an effort for me to socialize, even on a minimal level.  Maintaining relationships requires at least some level of interaction on a regular basis, and this is what I've been unable to do since the beginning of my illness.  Over the years, it has taken a huge toll on the number of friends I have.  There are very few people that I have any communication with on a regular basis, and even when I'm feeling a little perkier than usual I hesitate to contact anyone who hasn't been part of my life because I feel obligated to justify why I haven't been in contact and that just seems like too much effort, therefore exhausting me sooner.  It is apparently hard for people to believe that I am so tired that I don't even want to talk, not even on the phone.  If you've never experienced this level of fatigue you don't realize that merely listening and responding takes an effort.  And without even that basic communication people drift further and further away, and my pool of friends becomes smaller and smaller. 

The last few months have been even worse.  This autoimmune thing is kicking my ass.  At least with the heart stuff I could rest and, in the last couple of years, have a more predictable number of hours a week that if I pushed myself it was possible to make some human contact.  But since July even basic interaction has seemed too much to handle.  Everything that I have is given at work, as my goal has always been to not allow my illness to affect my job performance (accepting that it is already limited to only the office) or my interactions with patients and staff.  No one sees the effort, that once I get into my car there is an almost physical deflating of my body.  I drive home, which requires an effort to stay focused for even safety, change my clothes, throw some food down for the cats and then collapse on the couch.  At some point I struggle up and grab something to eat, mostly things that require no preparation and can be eaten while reclining, which limits selection and nutrition, and then rest for several hours.  When I can function again it is to make a nutritious lunch for the following day (the only reason my weight hasn't ballooned up even more), wash dishes, clean litter boxes, replace household supplies from the basement (ie soap, TP, paper towels, etc), shower and prepare for the next day.  Any communication with others is too much effort, outside of the cats who require blessedly small amounts of energy, making them even more endearing to me.  Days not at work are spent either commuting to a seemingly endless array of doctor's appointments or basic errands for food and basic house supplies.  These leave me exhausted and result in the same retreat into silence on the couch for hours, often for even longer periods as I'm recovering from the previous day(s) of extra effort needed for work. 

Keeping the house picked up and clean has become a laughable dream, as the few people who have been over can attest to.  Vacuuming once a week is a necessity and one of the times I'm grateful for living in only 850 sq foot space, as well as daily dish washing, but everything else is just pushed off to a 'later' that never seems to come.  Last week I stayed in Friday, Saturday & Sunday, leaving only once to go to the Farmer's Market.  That amount of time at home finally gave me the chance to change the bed for the first time in over a month--totally disgusting.  Had to strip bed, make up again and do laundry, all of which took over six hours with the number of rests involved.  The towels in the bathroom were also horrifically overdue, more than three weeks.  On another day I finally cleaned off the dining area table that was overflowing with paperwork, bills and the general stuff that seems to accumulate, a necessity after the addition of two more envelopes lead to a collapse of stuff all over the floor.  What wasn't touched was any cleaning of the bathroom or kitchen, any outside neatening up such as coping with leaves, or reducing the large amount of stuff piled so high and pervasively on the large kitchen table that even the square foot of space that allows eating has become crowded.  The benefit of living alone is that I'm the only one dealing with dirty sheets, towels and house.  I'm not proud of admitting these time frames, but it's my reality, and a concrete example of how things that most people take for granted becomes a major expenditure of time and energy for me.  Part of what keeps me in balance is that this is better than it had been when my heart was at it's worst and even eating was chore.  (This revisits a little known fact that you can't breathe and swallow at the same time, so someone in heart failure who is short of breath at rest gives up the eating for the necessity of breathing.  At least this isn't as bad as it was before, although the negative is that my weight is up from the combination of prednisone, lack of movement and continuing to eat.)

At this point I'd like to point out that what I'm describing is NOT depression, which would be the more common reason for someone to retreat so much from the world and severely limit their activities.  My mood is fine, with the exception of an occasional hour or two of depression at how narrow my world has become.  I want to chat and leave my house for a movie or something, but am just physically incapable of doing so.  My sense of humor is intact, as is my will and hope for improvement.  There is no question that I can not continue to live like this, and my expectation is things will look up once I'm out on disability and don't have to use every ounce of energy to work.  Knowing that there is an end point in sight is really helping my cope with all this.

I hope that this does not come off as complaining, but an explanation of the reality of chronic illness, which has become the goal of this blog and my revealing so much.  I also hope that for those of you who have never experienced this overwhelming fatigue it will give you insight and compassion for those in your lives who may be dealing with this issue.  Putting this in writing also helps me when I do get upset about my lack of friends and activities, because it makes for a very pragmatic justification as to why and how my world has become so narrowed.  On the plus side is that it's a new TV season, so lots more to watch while on the couch.

Unfortunately for the timing of my disability starting is the government shut down.  Outside of everything else is that the Social Security offices are closed, so there are no disability submissions being processed now, which means that there will be a backlog once the shutdown ends.  Since I know things will be very tight until I get on SSI and am able to work one day a week it doesn't make sense to apply when it's a guarantee that my application will take even longer to process than usual, keeping me on the restrictive long term disability for more months.  My plan has been for October 31 to be my last day: the PA I'm training to do stress tests is coming along nicely and should be ready by then, the last day of the month makes it easier for figuring out financial stuff and it would be the end of that work week for me as I'm not working that Friday.  But the date may need to be pushed into November if the shut down continues past the 16th or so.  Fingers crossed.

Thanks for checking in and following the saga,   Laurie