Postherpetic Neuralgia

I think unless someone suffers from chronic pain they truly do not understand what we go through on a daily basis. I've had friends tell me to just think positive go out for a walk do yoga or meditation. The reality is I cannot even move my right arm and shoulder so some days getting out of bed and taking a shower and washing my hair is a huge accomplishment. I'd love to be able to hike and kayak and take long drives to the beach like I used to love. Now I find myself a prisoner in my own home and Covid hasn't helped because of my week immune system I have been isolated since March. I'm single and although I do you have friends none of them suffer from pain. Thanks so much for listening -any advice on how to get through tough days?

I have been diagnosed with fibromyalgia, postherpetic neuralgia, anxiety, depression and PTSD.......finding a morning routine that worked for me, took a very long time but after much trial and error.......the best thing that works for me is being mindful about how I feel and what I'm thinking, meditation and prayer which is one of the most important things I do everyday.

I am also a medical marijuana patient and I take that time to also become very in tune with how I am feeling which is crucial in gauging my dosage.

Remember: it's okay if others don't understand your routine. Your routine is for you and your well-being.

#MorningRoutine

“Have you been feeling better lately?” she asked

“I feel about the same as always, that’s the “fun” part of chronic.” I replied

“Yeah I’d imagine feeling crappy is pretty consistent but hopefully there are still some feel good times.” she insisted

“I never feel great; it’s just less crappy sometimes.” I reiterated, unwilling to sugarcoat my reality for her.

-silence for nearly a month-

“Haven’t talked in forever, how have you been?” she asked

“I’m doing well thanks. How are you?” I lie

I am tired of hearing myself talk about my issues; I cannot imagine what it must be like for those around me.

“Maybe you should call [one of your doctors]?”

But which one, I think: the NP who suggested bone broth and hawks the functional medicine practice’s own brand of supplements? She said she thinks “feeling rested and refreshed should be a thing for you” after asking me for the third time if I have a gastroenterologist. The gastroenterologist who ignored my personal letter to him about my frustration with his PA and office staff that won’t release the results of my CT scan and gastric emptying test to the aforementioned NP? Who still has not told me what to do about my gallstones?

The family doctor who swore to me I wouldn’t get billed for the litany of blood tests she ordered for suspected parasites or SIBO or SIFO or something else I told her that I already know I don’t have and then later received a bill for the lab work anyway. I know my diagnoses and I know it sounds insane. But people need to make sense of things and this does not make sense.

● #EhlersDanlosSyndrome

● #Narcolepsy (or is it #IdiopathicHypersomnia or non-restorative sleep disorder and what does that mean and how does one treat it?)

● #MTHFRMutation

● Epstein Barr Virus

● Candida

● Diverticulosis

● Gallstones

● #UterineFibroids

Which doctor does one call for which symptom of which condition? It is all blends together in a sea of helpless, hopeless despair. For two years I have been trying to find a therapist to work with, which is difficult as a therapist but mostly because 9 out of 10 don’t return my inquiries. It makes me feel ashamed of my profession.

I’m awake at 5 am because my leg is aching again and has been for about a week. Is it HSV? Is it #Shingles and related #PostherpeticNeuralgia or is it a structural issue thanks to EDS? I don’t have a diagnosis for this one more thing.

“Maybe you should go to the urgent care clinic?” I fear that will entail one more medical professional who will say they have never heard of Ehlers-Danlos Syndrome and give me that look. The slightly skeptical look that seems to convey “hypochondriac?” or even worse tell me they don’t know what is wrong or how to help me and order more tests that my insurance won’t cover for which I will have to ask my parents to pay.

I’m also awake because I caved last night and picked up fast food on my way home from work last night. It was after 8 pm and I had been at work since 1pm, most of which was spent in a shared workspace full of stressed #MentalHealth professionals and a ringing phone and some Halloween candy. I had become irritable as the brain fog settled in deeply. It is difficult to explain why I am always behind on my documentation so I am constantly in fear of losing another job. I frequently overcommit myself because I still have not accepted that sometimes working for two hours feels like two hours too many.

I know I might not look sick.

I sat with my list of #FoodAllergies, which was the positive/negative outcome of the blood work I didn’t want, and chose to ignore the entire list because the idea of going home to thaw and cook some fish (the one I’m NOT allergic to) and some grain I probably am allergic to because apparently it is all of them except oats and I already had oats for breakfast, sounded like more than I could possibly handle.

My stomach is aching.

My leg is aching.

Maybe I should call someone.

Someone who loves me and wants to help but is probably exasperated that I have one more thing to add to the seemingly never ending list of complaints. Someone who is my friend but has all but given up on these exhausting conversations. A medical professional who does not even understand most of my diagnoses and believes that bone broth will “heal my leaky gut.” (Do you have a gastroenterologist? she may ask me for the fourth time.) A therapist who does not exist?

This morning I finally wept. I wept because I don’t want to die but living is so exhausting. I think some good food and good sleep would probably help but my pain disrupts my sleep and my #Tinnitus keeps me awake. I’m too tired to meal plan, shop and cook, especially given the ridiculous list of food allergies. I’m supposed to attend a continuing education lecture this morning to fulfill the ongoing requirements of my license so I can continue working in a profession that is both fulfilling and exhausting. I am supposed to go to that job later this afternoon to assess a potential client for treatment. I am supposed to have dinner with my oldest friend this evening to catch up; she has #CeliacDisease so we don’t know where to eat. As I lie here in pain, weeping from sadness/frustration/exasperation, I just want to stay in bed until Monday. But sleeping doesn’t pay the student loans. I have to work so I can buy the expensive, allergen-free groceries I need to eat but may not actually prepare.

A year ago I was denied #Disability because I made too much money in the two years prior to my hearing. I worked less than 20 hours a week and my parents had agreed to support me during the lengthy process. I made too much money because I went to graduate school to become a therapist. Being a therapist is draining and I cannot work enough to pay my bills. It is a continuous, vicious cyclical conundrum that keeps me not quite disabled but never really well. It took about ten minutes for the judge to tell me to keep up the good work and come back when I was truly unable to do so.

I recently celebrated sixteen years of sobriety and although I am happily recovered it is times like this that I think, “no wonder I drank” but no one wants to hear that.

Maybe I should call someone.