Invalidation, Coping, TN, Etc.

I just wanted to share a few of my posts that I have made on Facebook the past few weeks.  They touch on various topics such as Not fitting in, Coping, Invalidation, Trigeminal Neuralgia, etc.  The physical issues that can go along with the mental illnesses actually astounded me.  Little did I know, but have discovered through my research, that many of my physical issues may have been caused due to my mental illnesses.  I have also posted about the invalidation of being ignored on Facebook when I post about anything to do with my disorders/illnesses, etc. I am not going to touch on all of them in this post, but want to touch on a few I have written recently. I hope that all of you out there who are fellow sufferers may find comfort in knowing that you are not alone in your struggle and that there are people out there who "get it". Take one day, one hour, one minute at a time and keep on fighting the good fight. YOU ARE WORTH IT!!!  (I am also on Pinterest under BorderlineBroad and on Instagram under borderlinebroad)

Trigeminal Neuralgia - AKA The Suicide Disease - 08/12/17

 

Trigeminal Neuralgia (AKA The Suicide Disease)...Have you ever heard of it? Most people haven't and that included myself until about 14 years ago.

I started having sharp, shooting, stabbing pains on the right side of my face radiating from my head to my eye, down my cheek to my ear and then down through my jawline. 

THE ABSOLUTE WORST PAIN IMAGINABLE TO A HUMAN BEING!! This is why it's called the SUICIDE DISEASE. Unfortunately, for the longest 10+ months of my life, none of the doctors I saw knew that this is what I had. I went to my own doctor several times (she kept telling me it was my teeth, but I knew the pain was different than my pain from that, which is why I always say you need to be your own advocate because doctors are NOT always right), other doctors, specialists, several Urgent Cares, several ER visits, etc and still was in the worst pain of my life. It took one final visit to a different ER, another MRI of my head, another We Don't Know diagnosis by the doctor and then finally the nurse checking me out asked me a few questions and told me to get to a Neurologist ASAP!! She only knew because she had it also at a very young age which is why it was never looked at before because they thought I was too young to have it!! Within 5 minutes at the Neurologist I was diagnosed with it and after another few months and 3 different meds I finally found some relief from this debilitating disorder.

Before the diagnosis, however, I almost became one of the statistics. 26% of those suffering from TN committ suicide and I know exactly why. I was given every type of pain med imaginable and NONE of them even touched the pain (anti-seizure meds are what work, pain meds won't do a thing for this type of pain).

I started mixing alcohol with the pain meds, I would scream, cry uncontrollably, throw things at the wall, dig my fingernails into myself, cut myself, anything to try to divert the pain. It would come out of nowhere and last from hours to days at a time each time I had a flare. It's like constant electric shocks to the face or like being struck by lightening over and over again. I prayed to God on more than one occasion to end my life and also tried to do so myself. I would not wish this pain on my worst enemy, EVER!!
It's hard to pinpoint why you get this, but we figured that is was probably caused due to the trauma of my dad's sudden death about a month before my symptoms started (many of my other health problems also began around this time). It usually only occurs on one side of your face, only about 3% get it on both..guess who ended up being part of the 3%? (Go big or go home, right?)

It is under much better control nowadays, but I still do get flares, luckily most don't last as long as they used to, but the pain is just as excruciating as before.

I wonder all the time why I am still alive and I still am not sure of that answer, but I often wonder if is to help educate and bring awareness to these numerous, debilitating disorders/illnesses I have. This thought is what has kept me going recently and what keeps me speaking out for those who can't.

Having any type of invisible illness is a very lonely existence and it's even worse for those like myself who suffer from several (BPD, CPTSD, Fibro, RLS, IBS, Trigeminal Neuralgia, Depression, Chronic Pain, DDD, Chronic Fatigue, Social Anxiety Disorder, etc). Please don't judge us until you have all of the facts. Our life is unbearable as it is and we need the compassion and support of those around us. We didn't ask for any of this, please don't make us suffer more than we already do.

 The Pain of Being Ignored/Not Validated/Feeling Like an Outsider - 08/09/17

You know, I post about my Borderline (BPD) and rarely ever get a response (especially a question) of any kind. To me, that is an invalidation and hurts me to the core.

I feel like nobody cares, like nobody will EVER care about me or what I go through every single day (The extreme black and white thinking of BPD). I get it that everybody has their own lives and who the hell wants to know about something so dark and damaging and scary?? I sure as hell don't, but unfortunately I have no choice in the matter and I'm the one that has to live and feel like I'm some sort of freakish side show in this game called Life. I'm the one that hides my feelings, I'm the one that is scared by my own mind, I'm the one who is OCD about making sure the doors are always locked and the drapes are always closed, I'm the one who can't sleep at night fearful that the monsters will terrorize my mind when I'm all alone, I'm the one who drinks to forget, the one who slices her skin open to punish herself for her mistakes or to let out the volcano of emotions about ready to erupt inside, I'm the one everybody thinks is attention seeking when all I'm looking for is validation and understanding and acceptance.

I'm the one who has to live with a mind that won't shut off EVER!! I'm the one people don't understand. I'm the one people are scared of and I'm the one that lives in a world full of pain and flashbacks and nightmares that I have no control over. I'm a daughter, I'm a sister, I'm a friend and even though I may not be any of these things to you, what if I was? How would you treat me then?  Mental illness of any kind is scary to those around and even more so for those suffering from it.

I/We did NOT choose this, it's not something that can be turned on and off with the flip of a switch. We are human, we are suffering and most do it in silence. STOP THE STIGMA PEOPLE!!! Stop hurting, judging and invalidating those who are already suffering immensely!!

Before I would just give up and withdraw back into my shell, but I'm not going to do that anymore!! Rachel helped me see that I don't need to. She helped me see that I am worthy, that I can be loved and that there are some people out there who will take the time to listen, to at least try to understand and who can be compassionate. Her husband gave me courage to speak from my heart and to not be afraid to do so, which i remind myself about every single day now.

My posts can be dark, they may be informative, they may be scary or they may be funny. But whatever they are, they are not going to be apologised for anymore by me!!

My life is not a bed full of roses or funny cat videos. My life is scary and tumultuous and full of the unknown. Yes, on the flip side I love and see the beauty in things more than most people ever will and that is an amazing gift, but it's not like that all of the time and I don't have the luxury of deciding which one to feel at any given moment, my brain does that for me.

I am me. I am intelligent and kind, I am a fighter and a survivor. I am beautiful inside and out and I am not going to let others make me feel any less than that anymore!! My journey is far from over, my pain and fears will be along for that ride, but so will my strength, my empathy, my compassion and my love. Like Rachel did for me, if I can help even ONE person feel the love and more importantly the ACCEPTANCE that she made me feel, then it will all be worth it to me....You are always in my thoughts, forever in my heart and my guardian angel of strength sweet Rachel  

Physical Pain and Coping - 07/30/17

It's days like today that my phone should be taken away from me, lol 😜....I've gotten on my so called "soap box" on a few issues today which might not have bothered me so much had I not been in so much physical pain and feeling so exhausted...🎢

That's one thing many people don't understand is that usually with any type of mental illness, some or many physical issues like to tag along for the ride
 
Besides the mental illnesses, I also suffer from chronic back pain (2 back surgeries with a failed spinal fusion), chronic neck pain, Degenerative Disc Disease throughout my back and neck, Fibromyalgia, Irritable Bowel Syndrome, Restless Leg Syndrome, Trigeminal Neuralgia, spontaneous nausea and vomiting, edema of the feet, ankles, calves and hands, arthritis everywhere, thyroid nodules, constant stress infections, 24/7 hot flashes, COPD, insomnia, chronic exhaustion and the list goes on.

I'm currently on 15 or so medications, oxygen at night and since I can't get any pain meds thanks to all the restrictions now, I also have my medical marijuana card to help with pain, sleep and anxiety.  So, add all of that to my BPD, PTSD, Depression and anxiety and you've got a hot mess named Debra 😁

Some people think I'm "drama" or just trying to get attention or say I'm just making it all up and every single one of those is about as far from the truth as you can get. I'm in pain 24/7, wether mental, physical or both. I don't seek attention by speaking out the way I do; I hope that it will help others realize that this is some major, real life shit that we are going through and that we need and crave SUPPORT!! That support needs to include research, questions, etc. from our loved ones.

People need to understand about their loved ones illness (es) in order to better be there for them and that includes knowing everything that your loved one is suffering from.

I'm in pain and beyond exhausted today, one of the worst days I've had in awhile...As I recite to myself everyday, I'm doing the best that I can today and hopefully tomorrow's pain and exhaustion will be less, but if not, I'll deal with it like I always do and forge on. But please, don't call me dramatic or over the top or attention seeking because myself and/or anyone with BPD will tell you that's not even close to the truth. We just wish we knew what it's like to go one day without the demons and pain controlling our thoughts and lives. Just one single, solitary day of what most of you would call "Normal ".