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 🙂

 

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4 thoughts on “Redefining Normal

  1. Hi Jillian,

    My name is Jordan and I’m a 23 year old who just recently got the official and oh-so-lovely diagnosis of dysautonomia. I was just wondering what medicines you take or what you do, on an everyday basis. Specifically for pain, which is currently one of my biggest problems. But also when you overheat, have you found anything that helps?? Reading your blog I can see so much of myself in how you feel, so take comfort that you are definitely not alone! Hope to hear back from you soon. Thanks 🙂

    • Hi Jordan,

      The main meds I take for the dysautonomia are propranaolol XR (Inderal XR), gapapentin (Neurontin), and clonazepam (Klonopin). I also have an as needed dose of propranolol (regular release) for at night if I start getting the flushing and/or tachycardia. For pain, I take Flexeril (muscle relaxant) every night and have a dose as needed during the day. Those are taken care of by my regular doctor. I see a pain doc (board certified in pain management), who prescribes a narcotic (I asked for something weaker than what was originally prescribed), and occasional injections into my spine (I also have degenerative disc and joint disease, fibromyalgia, epilepsy, diabetes, and headaches).

      It took several tries of different meds to get on a ‘cocktail’ that worked. I think something like 5-8 different medications when I was first diagnosed in 1996. It was hard, but the Neurontin actually got me well ‘enough’ to work 8 more years before I had to go on disability.

      Let me know if I can answer any more questions 🙂

      Jill

  2. Hi Jillian,

    I was just recently diagnosed with Dysautonomia. It’s affected every aspect of my life. I never thought I’d have to be using a walker at 27, or taking nearly 10 pills a day. Like you, I have strong faith. We’ll get through this and remain strong! I hope to read more! 🙂

    • Thank you. I was diagnosed when I was 33… but with some medication adjustments, I got another 8 years out of work (with intermittent fainting and deep flushing when I was working). With the other disorders I’ve got, I’m at about 27 pills a day (not including ‘as needed’ meds)- it gets really old, but I can still live on my own, have a new puppy (who wears me out), and have to look at the good stuff ! I don’t drive much anymore, and have to make use of grocery drive-up (when I leave the store they put stuff in my trunk), and pace activities – like laundry, bringing groceries in (can get pre-syncopal in a hurry then), etc.

      Other people don’t understand- and I think that’s probably the hardest part- we all ‘look’ fine. Hang in there ! As you get used to your limitations, you can work around them. Walmart delivers stuff for free if the order is over $45. I use them for paper goods and laundry detergent, dish soap, etc. Schwan’s home delivery has frozen foods (the prices are somewhat higher, but the convenience of nuking a cooked hamburger patty, or broccoli, or whatever helps). If friends are willing to help, use them. I have one friend here- and she is willing to get my bottled water (frig is apartment issue, and too small for a Brita pitcher).

      I also have an ice vest (GlacierTek) that has made a huge difference. 🙂

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