I don’t know how to articulate my feelings and experiences in the small amount of time that we’re allotted. I wish I could take you home for a few days to see exactly what my life is like and what I go through. It’s not obvious in a half hour appointment where I’m simply sitting there and chatting. It can’t even scratch the surface.
A recent blog post of mine:
I’m tired of dying every day and being uncomfortable in my own skin. Of watching the light fade from my children’s eyes as another mention of “not right now” whispers through their ears and the ensuing frustration and defeat that washes upon their faces… my kids need me now. My hubby needs me now. My mother needs me now. My family needs me now. Tomorrow might not get here and time flies, moments pass, needs go unfulfilled looking for outlets and something to fill the void from avenues best left discarded.
I remember those times. My children are there now and yet I’m here, I see, I know, but I’m not present and I see this being fulfilled while my body falls apart and my mind wants to spiral. To be so dependent on a stinking little pill to wash away the pain and fatigue yet such controversy on something so tiny that gives me life in a way few will understand. No high needed or received, just relief, blessed relief from the torture my body inflicts upon me. Some days, not near enough, leaving me so despondent, I rather wither away and free my family from the burden I feel I’ve become.
The negative thoughts and heavy weights weighing them down like a chain around their necks in a sinking ship lost at sea. To free them. To free myself. To put an end to the drain on this life and allow healing to begin and forward movement on their own journeys this life will bring. May they never be saddled with these illnesses that grip me so tightly, squeezing the life out of me. But it’s heritable. It’s the gift that never seems to end. One generation to the next. My burden, my cross to bear laid upon the shoulders of my tender children and the guilt that consumes me because of it. My fault.
So, I have a heritable connective tissue disease. Not a drug seeker, an overly anxious pans positive female, somatic symptom disorder, attention seeker, no, I have a disease. I’m an actual Zebra amongst horses with a rare disease that finally explains all of the health issues I battle. 19 years of wondering what’s wrong and 12 years wasted when a prior doctor recognized the connective tissue disease, documented it in my record, but never told me and never sent me for further testing to finally put to the bed what ails me. I could have avoided so much misunderstanding, so much frustration, not knowing what truly is causing all the health issues I’ve been fighting.
It’s frustrating that my life revolves around a little pill. But that pill works so well, when at the right dose, that it gives me a few hours of my life back and my ability to tend to my household, my kids, my family. I can’t remember the last time I cooked dinner as I have terrible lassitude and am usually done for the day by 2 to 4pm.
Researching Ehlers-Danlos (the probably type I have), it can indeed lead to severe pain and that pain can be for life as it’s progressive and gets worse over time. It’s only symptom management as there is no cure and no treatment to make it better. I’m still trying to wrap my head around this as I’ve always had hope that one day, I will reach remission. One day, I’ll have my life back for a little while, but these last 5 years and finding out what truly is going on has shown me otherwise so I’ve been stripped of that hope of remission and I’m not sure I can handle that if that I don’t have relief from the pain and fatigue that weighs me down and runs my life. It is severe. I look so normal and so well, but inside, I’m falling apart and crippled in pain. I’m on my butt or back 95% of the time.
Occasionally, I get a good day. It’s happened only one time this entire year. I played catch up and worked on my garden, a task I’ve always taken delight in. Oh how badly I’m paying for that day. That’s my life.
I cleaned part of my bathroom the other day and paid for 3 days from simply cleaning my mirror, counter, toilet and tub. A task often neglected until my hubby can get to it or my daughter surprises me and cleans it for me. Summer is always better on my pain symptoms but much worse on my POTS symptoms but 6 months out of the year has been the most miserable years of my life and I’m not sure I can handle another winter without the pain relief. It’s hard to hold on to life when my quality of living is in the toilet and the pain consumes me. I know the market is volatile right now. There are groups out there fighting for us. Fighting for our rights as chronic pain patients to live as comfortably as possible while struggling with chronic pain. I’ve exhausted my options and found what works best for me on multiple levels as it helps my IBS-D, bladder, pain AND fatigue. I really am the rare patient when a pain med, which makes others sleepy, actually helps my fatigue and gives me some energy to keep on pushing through. I’ve been at the same dose for a long time now. I haven’t built a tolerance, but my pain has gotten worse. This is my life and all that I have to look forward to. I need to know that my pain can be managed. That I can be as comfortable as possible at least while my kids are young and need me now.
I’ve read that, as a palliate care patient, writing “palliate care” on the prescription should exempt a patient from the ‘recommendations’ given by the CDC. Hopefully soon that will change for all pain patients as we should never have to live in severe pain without relief when there are medications for this very thing. I just wanted to share what is hard for me to articulate in person. This is my life.