So, what I have is Trigeminal Neuralgia and Fibromyalgia. Both are nerve disorders. By pain level comparison, Fibro doesn’t even compare to TN. So, as of now the TN is what is hurting me the worst. Sometimes when I get some good TN pain control, I feel the Fibro. And that pain is no joke either.
So, I have done and do many different things to try to help and minimize my pain as much as I can.
Some things that I’ve tried that work for me are:
- a warm to hot shower while I sit on my medical shower chair
- my medical beads weighted blanket – it’s a life saver, (it puts the same amount of pressure on your whole body and helps to calm your whole nervous system, I HIGHLY recommend getting one for any kind of nerve pain, anxiety, depression, or sleep issues. I swear by mine and if you’re interested I have a friend that makes them at a reasonable price and you’d also be helping a stay at home mom of adopted foster children too).
- my Earth Therapeutics neck pillow that is scented with lavender and gets heated up in the microwave for warm moist heat. (I got mine at Bed Bath & Beyond)
- diffuse essential oils that are calming and balancing to me (I use dottera)
- take a warm bath in my jetted tub, while watching Netflix on my laptop
- watching a tv series that you have to pay attention too, because if you have to concentrate to know whats going on, it helps with the pain too
- listen to soothing music
- I’ve found a good message helps me
- of course there’s the pain meds, they help take the edge off enough that you don’t go insane, for the most part.
- and the best one is sleep, IF you can get any
And this past weekend, I went and got my medical marijuana certificate. Now I wait for the actual card to come in the mail and I can go to a dispensary. My surgeon wanted me to get my license and try it. It has way less (if any) side effects than pharmaceutical drugs and will help with my pain. I will still need pain meds when traveling out-of-state and flying, but while I’m in Michigan, I will be able to use it. The Dr who gave me my license told me that I need to do the oils and the edibles, as I am a marijuana virgin. (Except for one time in HS and the only other time when I was 21). He also said that this WILL work for me. The catch? There are about 130 strains of it and I will need to try different ones until I find the right one for me.That works for me. With my luck, it’ll be the 130th one I try…. BUT, if it works, I will try it! And I will look forward to relief with no side effects like swelling, bloating, weight gain, constipation, nausea. I will for sure be including my personal results in future blogs.
Here in my personal blog is where I can be completely real, it’s kind of personal diary of sorts – that anyone who clicks on my blog can read. It’s been quite helpful for me to get these things out actually. Look at that, again, I do something to try be helpful to others and I end up getting more than I’m giving. Crazy how that works.
In the spirit of no filtering the reality that is mine for now, I am in some eminence amount of pain lately. The kind that you can’t really hide from others. No matter how good at it you usually are, or think you are, or how long you’ve been doing it. I don’t know if it’s because I am in more intense pain or if I’m just getting wore down from it and so I can’t handle it as ‘gracefully’ as I usually can. But, no matter the reason, IT HURTS!!!!! Sometimes I wonder if I’m going to literally lose my mind. To be completely honest, I have had to rein it in and really concentrate to keep it sane on occasion. Pain is a nasty thing that can do nasty things to you. To your body, your mind, your soul.
But, you look fine. From the outside.
And then there’s the pain guilt. You don’t want to let people know really how bad it is, they feel so helpless for you, and hurt for you and get frustrated because they want to take it away for you, but they can’t. No body can. And sometimes, nothing can either.
It’s a very real thing, people losing their minds. I can totally see how it can happen. I believe its true, now.
I don’t know how some people can do it. Stay sane. Function. when my pain is excruciating, I have to try my hardest not to just go ape-shit-crazy. And I have Dr’s that believe me, Dr’s that will help me in any way they can. A plan, a light at the end of the tunnel (for this time, and possibly one more after this one), an end date, a brain surgery for pain control scheduled. That I know will work because it’ll be my 4th one. I have a good counselor. I have Faith and a God I believe is bigger than what I’m going through. I have prayer warriors that keep me lifted up. I have supportive and engaged friends, I have supportive and engaged family members. I have the MOST supportive and engaged husband out there. Seriously, God gave me him to help me get through this. I mean it.
So, if I have all of those things, and I can barely, I mean by the tiniest of threads, barely hang on some days, I don’t know how you all can do it without what I have. You guys are the real inspirations. I mean it.
Please know you’re not alone.
I hope by sharing my real struggles and how I really feel sometimes, on the inside, can help you feel like you’re not alone. Theres at least one other person out there that gets it too, that really gets it.
We’ve got to do better. We’ve got to do better for people in severe pain, chronic pain. People with mental disorders and diseases. People with rare diseases and disorders. People with invisible and hidden diseases and disorders. People, period.