Prick

I love a little word play and know where your mind went but it's not what you think!... Needles people, Needles 🤣 Testing, Poking, Prodding, MRI tubes for hours at a time... This is the life of those with chronic illness and it can frankly be a brutal one. If you happened to have seen a recent social media post from me, you'd know that during my last MS treatment session earlier this month, the needle physically bent as the nurse was inserting to try and administer my disease modifying therapy. I have so much scar tissue from constantly being subjected to the prick that it bent the needle! After the 3rd and successful attempt, there was much discussion about considering a permanent port being placed in my chest for future treatments and testing. I know that there are many out there with one that have pretty good success with it but it scares the hell out of me. It's like another permanent reminder of this disease that is slowly taking things from me. My husband and I recently took a HUGE leap of faith and moved across the country from California to Tennessee with no family nor friends within close proximity. I felt the calling to embrace what mobility I may have left and go out and live it up while exploring what the other half of the country has to offer. With that move come alot of moving parts and stressors although the latter has been pretty mild as I firmly believe we were led here. Unpacking is the worst when you have 50% use of your arm at times, chronic fatigue and pain and feel like keeling over anytime you bend over to pick something up because of Tachycardia due to Dysautonomia (fun word right?!). It really gets under my skin at what this disease has stolen from me. I'm tiring of saying I'm just ok when I want to feel good. I am tired of being so exhausted that it steals hours away from my days. The hard truth is that I/we endure it because I have to. In a 2019 article done by the Cleveland clinic and National Institute of Medicine, they found that 1 in 3 MS patients contemplated suicide and the actual suicide rate is double the general U.S. population of those battling mental health issues. To put that into perspective, the population of the United States is approximately 334,000,000 of which approximately 1,000,000 people have MS, a very rare and small percentage. Of those, approximately 300,000 MS patients contemplated suicide. This is where the data becomes a bit harder to pin down. Some say the completion rate is 1 in 4 of those 300,000 and some data in the UK shows higher or lower. Regardless of the end result, the suicide contemplation data is alarming. I'm not a scientist, doctor or anything close but I've made it a point to research all things relevant to my diagnosis and what it brings. That's just MS.... Please know that this is by no means my cry for help but a glimpse into the lives of those who suffer daily. It is referred to as the invisible disease for many and I can be the prime example on days where I may look pretty great on the outside but have become a professional magician of sorts hiding the rough stuff.

The problem is not just the hurting that comes from the physical, mental and emotional anguish but can also be caused by the changes to the brain from the lesions and where the damage is located in the central nervous system. I have experienced some of those changes in myself after developing brain lesions in the last year or so. I have never ever been super emotional in my life but now I find myself crying a whole lot more, struggling to remember things or find words on top of my other symptoms. For many, it can be a whole lot of silent suffering because we feel like a burden in many cases unable to do what we use to do. We hate to ask for help but if you're like me, you hate to accept it even more. Pride is a son of a gun. I once had the ability to do it all, ok most of it, by myself. I could ask for help Pre-M.S. but I really didn't need anyone to make things happen. This has been the case alot for me recently. I still tend to put up the strong front but there have been a few more days recently where I'm accepting the help while asking God what the purpose is for my pain, for my suffering. He hasn't answered or healed me yet so I keep pushing on hoping that my story makes the difference for even just one person. I count my blessings one by one and for me they include my faith, my family and balancing this life with humor and hope.

I'm a firm believer in that your mindset matters so very much. If I just accepted the limitations and potential for a scary future, I would be overcome with sadness and despair. I CHOOSE not to allow this diagnosis to overtake me. If you're reading this and struggling with something similar, I encourage you to choose to do one thing different in your day to feel better. I make a point to sit in the sunshine as often as possible because it really can make a difference, especially for those of us MS patients who are Vitamin D deficient. Do what you can, when you can. If you can walk, walk 10-15 minutes a couple of days a week. If you can read, choose something inspirational. If you can travel, go somewhere new.

One of the literal meanings of prick is to affect with anguish, grief, or remorse. The anguish and grief part is all to real to those suffering with chronic illness as a whole. For me, MS is a prick.

SUICIDE HELP LINE

If you or someone you know is contemplating suicide, please speak up and call 988 in the U.S. for help.

https://988lifeline.org/