Tag: walk to wellness

Getting Outside Is Good For The Soul

Bones

ian-stewart-Jkko0-lWoUY-unsplash

I have spent the day at a country manor, helping out with some very (very) basic farm things, such as finding the pigs and getting them back into their pen, and bringing the older cows in for drenching.

I even drove the two aside farm vehicle thing.  That was awesome.

Even through the drizzle and the cold, there was constant bird song.  The hills rolled on and on until they met the mountains.  You could see the valley wherein a dairy farm nestled.  And it was beautiful and so restful.

This morning I sat on the front deck while my dog zoomed around the landscaped front yard and I cried.  It wasn’t a sad cry, but rather that cry you get when you unclench and let everything you’ve held dissipate.  It took me some time to finish.  When I did, I felt renewed, and my chest felt light.

It just reminded me that I need to get out into farmland more often.  Not into bush – while I like it, it’s not where I feel most relaxed, but rather into the rolling green hills akin to England’s own.  Into lifestyle blocks and retiree blocks where there aren’t many animals, and they just need a bit of mustering because they’re so used to their humans and will follow them anywhere.

While I know it is only a transient feeling, I feel more settled than I have in a long time.

I Have Bilateral Trigeminal Neuralgia

Bones

aaron-blanco-tejedor-VBe9zj-JHBs-unsplash.jpg

In my right jaw, at all times, I have deep burning ache of bone being eaten away.  It isn’t, but that’s what it feels like.  I have an ache along my brow ridge.  The area around my temples incredibly sensitive, and makes putting on my glasses hazardous.

Sometimes it feels like a tooth is being pulled with limited analgesia.  On bad days, my zygomatic arch burns.  Sometimes the side of my nose gets a sharp stab.

Now on my left I have occasional flare ups of sharper pain coursing down my jawline and along my zygomatic ridge.

I am currently on 600mg pregabalin (300mg twice daily) and 600mg tegretol (200mg three times daily).  I’m maxed out on pregabalin, and only half way to max on tegretol, but I do not tolerate tegretol well and cannot go any higher.

Sitting around not making any faces or talking, the pain is tiring but manageable.  Talking causes pain.  Some eating causes pain.  Smiling and laughing causes pain.

It’s exhausting.  Explaining it again and again (often to the same people!!) is exhausting.  Being in pain is exhausting.  It’s never ending.

But the worst of it is the medication (tegretol) for treatment of the trigeminal neuralgia cause additional fatigue and aches!  Just what I need with fibromyalgia.

Well, I’ve gotten my referral to the neurologist, and we’re getting an MRI done (likely private, given how long it’s taking for my referral to be triaged!!), and then we’ll see what we can operate on.  Here’s hoping the public system doesn’t make me wait.

I Don’t Want Your Pity

Bones

design-desk-eyewear-313690

I’m back at university, which means interacting with other people, group work, class-wide work, and all that jaz.  This of course means explaining to a new group of people that my medications can make it difficult for me to talk at times – I’ll forget words, stumble over others, supplement one word for another without noticing at the time (I usually notice a few seconds later that I’ve done it), and the like.

And now explaining why I have to look like a robot and have no facial expression because I have trigeminal neuralgia throughout all three trigeminal branches – optic, maxillary and mandibulary branches.

Why I’m only coming to compulsory lectures / tutorials / practicals for a little while.

I am in an amazing group for my group work.  I am in a group that love each other dearly, who are open and inclusive, and who are genuine rays of sunshine.  I know their looks and their consideration come from a place of genuine care, but I don’t want it.

I don’t want it because it means they hear what I’m saying, and they think that’s awful, and I can’t allow myself to think that, because if I do I will break.  Because this is my normal, this is my life, it can’t be awful, and I can’t think that it is.  I can’t let myself think that my life is awful.

Because once I go down that road I meet nothing but expansive depression, and I don’t have the time for that shit.  I have a degree to smash.

I also don’t want the pity from my friends.  Or suggestions that I should take a semester off.  Not when I’m actually doing better, not when I’m improving day by day, not when they don’t see that because they don’t interact with me day by day.  While I appreciate it’s from a place of concern, I also found it rude and overbearing.

Except I also feel guilty for finding it rude and overbearing.  I feel guilty for asking her not to mention it again, for asking her to trust me when I say I’ve got this.

Managing disability surrounded by able bodied people is a challenge.  Dealing with their perceptions, their opinions, and their ignorance is, at times, completely beyond me.

So instead I whinge about it in a blog.  Hey, it gets it out there, and it makes me feel better, and hopefully someone else will read this and know they are not alone in what they are feeling or what they are struggling with.

I don’t know the answer to these challenges, I just know that I have to work through these feelings to understand what it is I don’t like and come out the other side.

A Change in Medicine – Doubling Pregabalin

Bones

raphael-biscaldi-rE3kbKmLmhE-unsplash

During my visit to my doctor yesterday, he noted that I was also on Pregabalin, which reduces nerve pain … like trigeminal neuralgia.  As I’m having some fairly intense side effects from carbamazepine, he suggested we double the dose of pregabalin, which was relatively well tolerated, and subsequently reduce the dose of carbamazepine to one that is sufficient to keep the pain under relative control, but also reduces the side effects from it.

I began my doubled dose of pregabalin last night (300mg twice daily).  This morning I feel dizzy as anything but totally awesome.  I’m just lying here on the couch with my legs up on the back of the couch (a position I find most comfortable) and I am incredibly dizzy and also feeling quite euphoric.  I am definitely rambling.

I usually experience some fairly intense dizziness with pregabalin during the first 1-3 days, as well as some euphoria, and a good mood that continues on.  I know what to expect with it.  My hope is that the doubled pregabalin will allow me to reduce the tegretol from 400mg twice daily down to 200mg three times daily, or even lower!

But first, get through the dizziness and make sure the pregabalin is taking off that last bit of pain.  Then I can start adjusting.

Nightmares – A Small Setback

Bones

andrew-neel-wwQaXLF6stk-unsplash

I’ve been having dreams, nightmares, whatever you want to call it, I’ve been having it.  It invariably involves one or the other of my past abusers.

My usual nightmare involves It, the narcissist I was with for the longest, the one who caused the most damage, and my PTSD.  It typically involves him returning, and just assuming that the relationship is back on, and I fake it.  I fake it to hide my relationship with my amazing human being – which is basically what I’m doing now, minus the being in a relationship with him part, and more with him being on the other side of the world (THANK FUCK).

My first abuser was in my dream last night.  Then, later on in the dream, I did what I have always dreaded doing.  I said Its name instead of my amazing human being’s name.

Sometimes, in the awake world, It’s name will be on the tip of my tongue instead of my amazing human’s name.  I don’t speak when that happens.  I have almost been away from him for the same length of time as I was with him, but some scars take longer to heal than others.

All of this has … done something to me.  I feel flat and anxious at the same time.  I don’t want to do anything.  I want to bundle up in a blanket and drink tea and watch Forensic Files.

And unfortunately I can’t today.  Or at least not all day.  I have adulting I must do before I can be an amorphous blob.