Redefining Normal

As I continue to struggle with some of the medical issues I’ve got, I’m trying to figure out how to maintain my independence, safety, and general medical stability.  Sometimes that’s easier said than done, and on days when I don’t feel as bad, I forget to pay attention to what has become my reality, and I get into trouble.  I know my primary triggers for the dysautonomia are pain and heat (my perception of heat- not what others feel as warm).  Dysautonomia, diabetes (5 shots/day), epilepsy, chronic pain, fibromyalgia, arthritis, bone spurs, degenerative discs (neck, thoracic spine, and lower spine), scars in my lungs from massive pulmonary emboli, one replaced knee, one messed up knee, etc), fluid retention…..  There are a lot of things to have to adjust things for, and sometimes it can be overwhelming.

I have to avoid being overheated away from home at all costs, since I can easily get to the point of passing out.  This involves keeping my body cool enough on the outside (using my ice vest when needed), and avoiding ‘internal’ heat through foods that are too warm.  Any activity that increases body heat or heart rate is no good. So my activity tolerance is pretty dismal.  In the summer, this involves shopping after the sun is down, and not leaving home any more than I absolutely have to.  Ironically, the winter is almost worse since everybody has their heater on, and I don’t tolerate artificial heat well at all. I keep my thermostat at home set around 60-64 degrees, or I get into trouble even being at home.  It’s going to be in the 30s tonight, and I’ve got the air conditioner on… no joke !

Cool and cold foods are much less likely to cause my body to overheat (duh), so I avoid warm and hot foods unless I’ve got the thermostat ‘perfect’, and I’m not already having trouble.  I never drink hot drinks. I have never liked coffee, but don’t drink hot tea, and if I do drink hot cocoa, it has to cool off considerably, which sort of defeats the purpose.  The process of cooking (or even just ‘assembling’) meals is very difficult. Repetitive motion of prepping food is extremely painful, and if it involves using the oven or stove to cook it, I have to be very careful that the thermostat is set low enough to help compensate.  Even stuff reheated in the microwave can be a problem.

Pain is something that is nearly impossible to avoid.  If I’m awake, I’m in pain.  Any repetitive motion sends my muscles into spasms, which can get to the point of causing vasovagal reactions.  I feel like a wuss.  There are so many things I want to do, but it’s just not safe. I need to see my pain doc again and talk about the next step in pain management. The sporadic injections into my spine aren’t helping at all, and the pain medications I have aren’t really that strong, and don’t work that well.  I do use more NSAIDs (ibuprofen, naproxen sodium) now that I’m not on blood thinners, but they don’t do a lot for the deep pain.  I’ve resisted taking anything stronger that the doc offered before. He understands that I’ve worked in the addiction rehab business (as an RN), and have seen some horror stories with detox.  I know that pain medications used as prescribed are very safe. I’m just a chicken…but I have to get over that at some point so I can function at home as independently as possible.  I’m losing some of that.  It’s a little scary to be just under 50 years old, and looking at needing help to get basic tasks done.

I already have mail order for as many things as is practical and available.  It helps a lot to have it just dropped off at my door.  My dad takes the trash to the dumpster sometimes; I still try to do that when I can, so I’m not doing ‘nothing’.  Today, that was very painful- but I got it done.  A childhood friend of mine and I have reconnected, and she has helped with many things- and will help with more if I just ask her…. it’s hard to accept help.  I’m supposed to be the one who helps others. I moved back here to help my dad with my mom, but she died.  I worked as an RN for 20 years, so I could help people.  I don’t want to need help.

I feel like I’m just not trying hard enough, but I’m starting to realize that my body is broken, can’t be fixed, and I have to do whatever I have to do just to ‘maintain’ things at home.  Leaving home isn’t really something I can increase… it takes quite a bit of equipment to be away from home for more than 2-3 hours.  I have to get home before the ice vest inserts I’m wearing begin to thaw too much.  As a twenty-something young nurse, I sure never saw this coming.

I’m thankful for a lot- I have a garage attached to my apartment and a washer and dryer in my apartment.  That helps a lot.  I have a great new puppy, who wears me out, but has  amazing positive energy.  I know things could be  a lot worse; I worked in some rough areas of nursing and saw some pretty tragic situations.  I’m still living at home, alone (which I prefer), and have figured out how to get stuff done, even if it’s not like I used to do things.  I believe that all things happen for some reason.  I have strong faith in God, and I trust that He can use this for something good.  Yet, there are days when it’s hard living like this. My world is pretty much my apartment and my dog.  I still have my dad around, and we’re in regular phone contact, and usually see each other weekly.  I’ve got computer access to former coworkers, and friends.   I’m still in remission from leukemia and I can still keep my mind busy with various things. So things could be worse. ‘Normal’ has changed.  But I think that as people go through life, even if they’re relatively intact, lives change.

At least I’m still around, and I have to make the best of it 🙂

 

The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full time hours slowly. My body was broken.  There was nothing to do to fix it.  I entered a world I didn’t really  understand- that of being useless and having no obvious purpose. My life since the age of 21 had been about being an RN (I graduated from nursing school in May 1985).  I had worked so many overtime hours and holidays because I enjoyed working.  And then it was gone.

I’m not sure when the medical problems ‘officially’ started, but I know when they got bad.  About 5 months after moving back to the midwest from Texas, and being subjected to indoor heat, the symptoms of my dysautonomia became severe enough to cause me to start having heart rate and blood pressure episodes that made working impossible at times. Then, over the next 10-11 months, it got to the point  of being totally unable to work.  I’d pass out if I got overheated, and that didn’t have to be all that warm- most people found themselves comfortable when I was turning beet red and feeling like I was going to faint.  Then there were the seizures.  Later, it was discovered that they are more likely to start at the beginning of sleep cycles…but that could be at the beginning of blood sugar fatigue, as well as the deep sleep I’d end up in after one of the dysautonomia episodes. It was a mess to sort out.  My boss and co-workers told me what they’d seen, which helped the doctors at the time.

My employer had started sending me to the emergency room by ambulance when I was found unconscious or seen seizing or collapsing. I was a liability.  It got to be a routine occurrence.  I was sent out more than the elderly residents at the nursing home where I worked (like a dozen times in the last 2 months I was there).  I remember none of the ambulance trips, but I do remember a lot of abusive ER nurses and docs when I would ‘come to’, who thought I was a low-life ‘frequent flyer’. They never stopped to realize that I hadn’t sent myself to the ER- I’d been sent.  ER personnel like to fix things. I couldn’t be fixed, so they took it out on me with name calling and general ‘disgust’ when they interacted with me. There was a rare ‘nice’ doctor or nurse, but I began to dread waking up in the ER.  It got worse before it got better (I found a different ER).

Those initial months and then years of not working were really difficult. In addition to the neurological disorders, I was having drug interactions that dropped my blood pressure low enough to cause small strokes.  It wasn’t uncommon to have a blood pressure in the 40-50/20-30 range.  I was usually still conscious but definitely feeling very unwell.  It was scary.  I eventually figured out a way to put a thin feeding tube in my own nose to put Gatorade through, in order to increase my blood pressure with fluid volume.  It beat going to the ER.  There were also the times when the dysautonomia kicked in and my pulse and blood pressure would go nuts on their own.  I was so frustrated that I couldn’t just ‘make myself’ do things that used to be so normal.  Like work.  Or go out in public, where the thermostats were out of my control. Now, I’m pretty much homebound, aside from monthly trips to the grocery store or MD appointments. I have as much as possible delivered.  It’s just too painful and risky to do much away from home.

It took many years to work through the shock of being unable to work.  I kept thinking I just had to ‘make’ myself well enough.  But I was having trouble doing basic things around home.  My world shrunk to that of my apartment and the monthly trip to the grocery store, or doctors’ appointments.  At the time, I had nobody to socialize with; I had no friends here.  I also didn’t have online access to most people I’d known in Texas, and none with people here.  I had my dog- and she was so important. I also had regular contact with my dad. But nothing with anybody who understood being a nurse, or being disabled.

Things are getting progressively worse when it comes to ‘normal’ activities. I just took the trash to the dumpster (about 12-15 yards away), and am now in considerable pain.  Pain is a trigger for the dysautonomia (along with heat), so I need to get more comfortable to prevent my blood pressure from crashing.  It’s very frustrating to feel like such a ‘wimp’  with normal activities.  Making lunch is also painful.  I have ‘grab and go’ foods as much as possible.   When I have ‘good’ days, I’ll make tuna salad- and then hurt.  I keep trying to do things, and it’s harder and harder.  I don’t know what sort of future I’ll have.  I am trying to find ways just to  make things work here, so I don’t end up needing assisted living anytime soon.  I want to be independent. It’s hard to accept help.  I don’t want to be a ‘whiner’ or not do as much as I can… but when I do, I always end up in a lot of pain, and often pre-syncopal.  I turned the air conditioner on about a week ago, when the night temps were in the 20s, but daytime temps were over 40.  It’s a matter of just being able to survive being at home.

I think about my old life a lot.  I miss working as a nurse. I keep my license active so I don’t have to say I ‘was’ a nurse.  I still am a nurse- unable to work as one, but I’m still a ‘real’ nurse.  Many things have changed in the nine years I’ve been disabled. But there are core nursing things that I still remember. I remember some of the patients  I took care of, and many of the other nurses and personnel I worked with. Those are good memories.  I’m glad I have them.

To those who think it can never happen to them…. you never know what life is going to hand you, or what challenges may come  your way.  Get disability insurance whenever you can.  It can make the difference between living in a decent place, or barely making it at all.  Take time to enjoy things, and don’t work ALL the time.  Jump on all opportunities to experience all you can.  Don’t create regrets.  Do make time to nurture friendships that will last.  Don’t let horrible experiences create limitations that don’t have to be there.  Live as much as you can !