Some of you lovely followers, readers and fighters might have noticed that I hadn’t blogged for awhile. Why? Where have I been? The short answer is HELL.
Yes, I have been in hell, or as close to it as humanly possible. And its hard to do almost anything when you are fighting levels of pain beyond anyones coping skills. I very nearly broke my “Do Not Take Me To Hospital Unless I Am Hit By A Bus” rule! It was THAT bad.
On top of the usual strain that joint pain, spasticity, Tremor, stomach pain, dry eyes and every other thing, I recently added a Trigeminal Neuralgia flare to the very long list of challenges.
For those, like me, who hadn’t heard of TN until I got it, here is a little explanation straight from the helpful internet…
Trigeminal Neuralgia is a pain that is described as among the most acute known to mankind. It is also known as tic douloureux. It is a chronic pain condition that causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as 2 minutes per episode. The condition is characterized by pain often accompanied by a brief facial spasm or tic. Pain distribution is unilateral and follows the sensory distribution of cranial nerve V, typically radiating to the maxillary (V2) or mandibular (V3) area. If you have trigeminal neuralgia, attacks of such pain are frequent and can often seem unbearable.
It is also called the ‘Suicide disease’ due to the amount of people who can tolerate the pain no longer and opt for this release. I can fully appreciate why they would.
Some people suffer for many years without remission; I am in my second week of it and a day with feels like a lifetime!!! I am hoping for remission soon but I can’t be sure… In the meantime I have to manage all the other pain that is going on and the doctors appointments, injections, medication side effects and infusions. People who think the chronically ill just feel a bit tired and sit around all day are SERIOUSLY MISTAKEN. No one could pay you to go through this and you wouldn’t wish it on any other human being.
Even as I am writing this I have had to stop many times and cry and rock back and forth in pain. Ever since it started I have felt a LOT of ‘why me?’ moments. I have to say it does feel like too much on top of the daily unbearable pain that I already go through. Its a cruel blow.
I have done EVERYTHING I know how to distract myself including internet, support groups, ebay, pinterest, twitter, rocking back and forth, crying, meds, hot packs, burning candles, petting my cats and dogs… you name it!
It beggars belief what this world can dish up, it really does. I am not sure what it all means in the ‘big picture’ but I am certainly not a believer in ‘what doesn’t kill us makes us stronger’.
I, like many of you reading my blog, try and make the most of the moment. ANY moment. Any moment that I can do something, smile about something, share something, touch something, connect with someone, help someone… I do it. It’s what keeps me going and it’s all that makes sense to me now.
This year has been especially brutal, and I guess there will be more years like that ahead, I really don’t know and cant know. I don’t want to know. Living with Autoimmune Diseases means living with uncertainty and struggle. Living with pain and challenges. Learning how to connect with others and yourself. There is no EASY and never will be.
For now though… for this moment… all I can do is my best. If that is crying and holding my husband than that is what I will do. If it means cuddling my pillow and groaning then that’s what I will do!
So…The answer to ‘where have I have been’ is hell, and I am not sure how long I have to be here, but while I am here I hope that I can at least get a tan.