Monthly Archives: March 2016

(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia  – the most painful medical condition known to man.)

I just returned from an extended stay at my dad’s house in Florida.  I went there for several reasons.  I wanted to provide some company for my father, who is having difficulty getting around due to knee problems.  I wanted a change of scenery.  I wanted to find a place where maybe my pain would be a little better.

I was two out of three.  My pain remained the same.  Chicago may have blustery winds and sub-zero temperatures that are hard for someone with TN, but the ever-passing fronts of weather in Florida doesn’t do us any favors.  However, it’s a lot nicer being in pain in seventy degrees than in seventeen.

I had a little trepidation about returning home.  One thing I realized many years ago is that I don’t really get too attached to any particular place.  I’m sort of a “wherever I hang my hat” kind of person.  I quickly got acclimated to my dad’s place without feeling like it was some foreign locale.  I was like that when I used to travel for business as well.  Once my clothes are in the closet, my pillows are arranged how I like them and a quick coming up to speed on the TV channels is complete, I’m pretty much at home.

But this time was different.  Returning to my little apartment wasn’t bad.  I like my place, although it’s getting too expensive to live here.  It has a good sized kitchen and more closet space than I’ll probably find when looking for a new home.  And closet space is of paramount importance.  My view is of a forest preserve, which is not only pretty but provides the safety of knowing no one can peer in my windows.  I vacuum naked sometimes.

My anxiety about returning to my place is that I really don’t understand what my place is these days.  Being unable to work has left me somewhat at sea with regard to who I am in the grand scheme of things.  I think for me that’s one of the biggest challenges with having a chronic illness.  What is there that provides me some personal sustenance?   I know I’m a good daughter and a good sister but beyond that, what can I grab onto that makes me feel I’m a part of the world?  That was a rhetorical question, please don’t send me recommendations.  This is the question only I can answer and as we transition from winter to spring, it is my goal.  I want to blossom forth with a new direction, a path, a plan to find my place.  Maybe it will be volunteering or attempting a part-time job (although honestly, I wouldn’t hire me).  Or maybe I’ll meet a special someone who will spark in me the momentum to move forward.  Don’t get me wrong, I do not think a romantic interest should ever constitute someone’s whole world or identity.  I’m just saying that finding someone supportive might influence me to be more assertive in my quest.  I would want someone to be proud of me, and laying on the sofa all day isn’t too impressive.

See that picture up there?  That is the closest representation I could find of my imaginary “happy place” – a type of calming image that therapists often recommend to help people deal with stress.  It reminds me of when I was in nursery school where there was a big goldenrod field that we would run through during recess.  I find myself thinking a lot about my happy place these days.  Oh, not the goldenrod one, but a more personal one. One that brings me back to when I didn’t have constant pain.  And one that I hope opens up in me the pathway to a happy place that is more steeped in reality than imagination.   In the meantime, I’m just going to keep looking at that picture.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia  – the most painful medical condition known to man.)

Okay, it’s not just the little things, it’s the big things, too.

When you have a condition like Trigeminal Neuralgia, there are a lot of significant changes that happen.  In my case, I had to give up my career.  Relationships with my friends changed.  My family has rallied around me, yet there are times when I still know that they don’t “get it” (and I can’t blame them).  And of course there is the constant, sometimes excruciating pain.

But once you settle in with life as a TNer, you also notice the little things that once were so easy or enjoyable that become completely different.  Here are my Top 5 things that used to be simple pleasures but now totally suck:

Jammie/Shower/Jammie Days – These are those days, most often on Sunday, when I would wake up, bum around a little, watch football and make sauce.  Around three o’clock in the afternoon, which in my case came after the Bears had been humiliated, I would take off my jammies, take a shower, and put fresh jammies on for the evening.  When I was working, these days were an indulgence.  I felt no guilt or low self esteem on these days.  But now, many days are jammie/shower/jammie days and if I’m really being honest, there are days when the “shower” portion doesn’t even happen.  Now they are a reminder of the days I used to have at work or doing something meaningful that made jammie/shower/jammie days so special.  Now they just feel icky.

Gloomy Days – I live in Northern Illinois, we get our fair share of gloomy days in the winter.  Those are not on my Top 5 list.  But every now and then in say June or September, a rainy day would come along to kind of break things up a bit.  If I was lucky and didn’t have to work, gloomy days became jammie/shower/jammie days, where there was no better place to be than lying on the sofa, maybe with a good book, listening to the rain.  Now gloomy days are taxing both mentally and physically.  One unfortunate by-product of TN for me is that I can predict the weather with my face.  And nothing amps up the pain more than low clouds and rain.

Jumpng In The Shower – Okay, I don’t mean actually jumping up and down while in the shower, rather, just hopping into the shower without even thinking about it.  Now every movement must be planned so that the water doesn’t hit my face.  The water must be at the optimal temperature regardless of whether I’m trying to warm up in winter or cool down in summer.  I know several women with TN who have cut their hair short to avoid the risk of using a blow dryer.  I have kept mine long because for me, it’s much easier to put my hair in a ponytail than to try and wrangle with bedhead if I need to run out without showering first.

Sweaters – “Sweaters?” your thinking.  “Really?”  Yes.  I am a sweater girl. I love sweaters.  I look forward to those first days in Fall when I scour my collection for the first sweater of the season.  The problem is that now putting on a sweater, especially one with a turtle neck, can cause my pain to flare.  I now have many sweaters where the neckline is so stretched out from my pulling on it to make it looser for when it goes over my head that I look like I have a turkey neck.  (Okay, I’m totally blaming TN and the sweater thing for a neck situation that would probably be there anyway due to my, ahem, maturity.)

Driving – I do so love driving, always have, but an important part of my driving pleasure has been taken from me by TN.  It is the windows down, radio blaring tradition of driving.  I can still blast the radio, and I do, but it just sounds different with the windows up.  And having the wind blow on my face is enough to make me distracted and while I tend to be a leadfoot, I consider myself to be a very conscientious driver.

There are many more simple things I could list but I’ve been struggling with writing lately.  I have about ten blog posts that remain in draft form because I lose focus as the brain fog thickens and I can’t finish them.  Like I said, it’s the little things.