Ok so let's start here..... I've lost a handful of followers and if anyone has noticed I've been moderately MIA lately. Those still following and supporting me.... it's all love and good vibes. My absence can be explained to what is known as "Invisible Illness".
First and foremost, my upsides and strengths run deep. I had my daughter 100% natural and drug free. I have beaten a cancer diagnosis. Two car wrecks have left me with a horrid back and spine but I still do my best. I live and go about my everyday life consistently debilitated by a handful of things.... with a smile and an attitude that is forever grasping at silver linings, good vibes, and positivity.
But unfortunately for me... it's a handful of things going on that interact with each other and each can make the others worse. I've been pretty unwell as of late and have focused my energies on my family, my work, and our crypto endeavors. In that order. And by the time those things are at a barely adequate level of handled.... my energy is completely expelled. And when I overexert myself, it becomes much worse. Too many people are undereducated or even unaware of what's known as invisible Illnesses.
Personally, I suffer from 2 invisible Illnesses. As well as a seizure disorder that started a little under a year ago that arose from a head trauma I received from a fall. The "invisibles" are an anxiety disorder, and recurrent Epstein Barr virus I contracted from getting mono about 2 years ago, and I am also sometimes told it is possible CFS as well, or chronic fatigue syndrome.
Here's these two broken down:
Anxiety: Anxiety is a very ugly and sneaky culprit that has many ugly faces. It can show up as such immense, body-deceiving, irrational fear of basically nothing where your fight or flight response backfires. You crawl in your skin, panic over nothing, and your body betrays you. Mulling 100s of scenarios through your head in seconds, overwhelmed by your own superfiring thoughts. You become consumed. Shaking, hyperventilation, anger, depression, even to the point of passing out from fear and hyperventilating. I have been labeled as "strange" "weird", even called a "tweaker" by some of those who have seen smaller, quieter attacks. It's a constant battle of being told calm down, it's in your head, you can beat this.... well. Not quite. You can combat it with proper self care and mindful meditation, mantras, calming practices, And even a series of counting in certain ways to bring you back to reality, and out of the rabbit hole as I call it. But usually my mind is overrun by thoughts entirely too quickly and it is overwhelmingly suffocating to your mental wellbeing
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EBV/CFS/aka recurrent mono: the Epstein Barr virus is a virus that usually lay dormant in most people. However in some, it can create pockets of fatigue, muscle aches and pains, cognitive and neurological slowing/difficulties, as well as swollen/sore throat, fever, swollen glands, and can sometimes swell your spleen and liver. It can last a week, or for months. You can go months feeling fine, and randomly hit a flare up that lasts weeks or months. It is totally unpredictable. It can also be linked to causing more severe disorders such as certain cancers and MS. Usually mornings are ok but present a slow decline through the day as I exert energy during a "flare up". Sleeping for hours or days on end and still feeling as though you've been awake for weeks. And the body pains are enough to bring tears at times. These symptoms are difficult to tell apart from CFS(Chronic Fatigue Syndrome), due to diagnosis being mostly speculation by the doctors. The symptoms however, are almost identical so although unrelated, they are essentially the same ballpark.
My more 'visible' difficulties:
Seizure disorder: this is nothing short of humiliating. You are stripped of independence, become highly dependent on others, and lose many "free privileges" most people have. Ie bathing in a tub, swimming, or walking up or down stairs alone. And especially driving a car. Don't take these for granted, for I never knew how much of an emotional and mental roadblock this would cause me. And the physical act of seizing, although most people are more than helpful and understanding, is embarrassing at the least. The foaming, flopping, shaking, gutteral-noise-laden, sometimes peeing yourself, grand mal aka Tonic clonic seizure that you never have a recollection of is beyond humiliating. And to have no control over it is infuriating. And the heartbreak of seeing your loved ones suffer from seeing you suffer. It's probably the worst. They fear for you as much as you fear for yourself, and they usually feel just as helpless all the same.
As of late, I've also suffered from a long, painful, unpleasant, and mind-terrorizing experience. I developed a uro-gynecological problem and I am still fully recovering, however I am on a positive path because it is gone and I am healing. Soon I will be totally healed but the effects on the mind I'm sure will heal a bit slower.
And to top it off, I lost a battle versus a pair of scissors a few days ago, and have two stitches in my hand, complimentary tetanus shot included.
So all this added up.... my physical and mental status are not the best at the moment, but I try to remain positive. The best course of action for me is to take the best physical care of myself as possible. Good diet, stay hydrated, lots of rest. But life doesn't take a break for anyone. And basically, each of these things is kind of a perfect physiological storm... The anxiety makes the seizures worse, the worse seizures make the cognitive and memory recall symptoms of the EBV much worse, that gives me more anxiety due to my declining state and the fear of more seizures, the declining state makes all the ebv and/or cfs symptoms much worse. Fatigue, loss of appetite, fever, sore throat, dizziness and lightheadedness, swollen glands, etc. Even extreme light and sound sensitivity. Migraines. And it just becomes one big rabbit hole. But I have devised a new vitamin regimen based upon research done earlier today while I still had some energy. Found some vitamins and supplements shown to help symptoms of most of my problems. Anyone interested in a post devoted to that?... Drop a Line. But hopefully this has positive results and I know I have high hopes.
Sometimes it's hard not to fall in the wallowing hole of self pity. To wonder... why me? Why not someone else? Do I deserve this? Am I crazy? A hypochondriac? The answer is no. We are not crazy. Others need to not judge people when that person with a handicapped sticker seems to walk just fine to the store. Little you may know that person could walk short distances fine(hence the sticker), but a slightly longer walk may produce pain and exhaustion to the equivalent of you or I walking 5 football fields. It's never fair to assume. People who haven't seen or experienced these things don't understand. So education and awareness is key!
There are many other invisible Illnesses so I'd love to hear more in the comments about others who are familiar to help to foster education and understanding! Upvote and reblog!
Some examples of invisible illnesses are:
Severe Allergies
Neurological Disorders
Rheumatoid Arthritis
Cancer
Multiple Sclerosis
Fibromyalgia
Migraines
Depression
Diabetes
Digestive Disorders
Heart Conditions
Mental Illness
Infertility
Lupus
Lyme Disease
I did not know about these, thanks for sharing. It's quite amazing how much goes on in the background of our bodies and minds - and how little it can take to unbalance them. Good luck, I hope things improve for you.
Have you tried medicinal cannabis?
It may not help on the fatigue side of things or mental clarity, but could certainly alleviate some of the other symptoms you've described, stimulate appetite, prevent migraines, reduce outbreaks or seizures, etc...
I know many people who use cannabis medicinally for the ailments listed above, and swear by it as the only thing that has helped their conditions when the medical establishment was unable to properly diagnose or treat their conditions effectively.
Just a suggestion, definitely something to look into if you haven't gone there yet. I'm a licenced user in Canada where it is expected to be fully legalized next year, but I know NY is still kinda tight on that sh-t, even medical use, unlike Colorado or California.
Love you even more! Im an MMJ cardholder!!!! 😘
Thanks for the post. I never knew what an invisible illness was. You should definitely post about the vitamins you discovered, and the properties and symptoms they treat. Do you know any natural foods that can be helpful?
I think you should feel good that you managed to make an excellent post like this one to benefit others who might be going through some of the same things. That is a sign of progress that you won't be fully debilitated by anything in your way.
I still suffer from Social Anxiety Disorder and Sensitivity problems which I don't see on your list. In the past I suffered from Depression on a clinical level and didn't even know it. I think my mind has recovered from these disorders primarily by removing some of the environmental stressors that were wrecking my life. For instance I was so poor that I had to mooch on family, I couldn't afford to do anything with friends, and they never called to hang out because I turned them down so many times because I was too poor and sad to enjoy a fun night hanging out (one of my biggest social anxieties)... most of those things can be remedied not with drugs, but by being fortunate enough to get a decent paying job for starters. Once I felt like I could get off skid row, things got easier as I could invest time and money to make a better life for myself. I don't worry about what other people think so much anymore, and I can find happiness in allowing myself to enjoy things solely for my own selfish benefit once in a while. Meditation CD's from Bob Griswold have really helped me to release a volcano of emotions that could never find a friendly ear willing to hear me. Nobody knew the right way to encourage me until until I heard those tapes. Once those negativities get flushed out, all that is left is overflowing peace and love to share. By achieving that state even one time, I was able to release blockages in my brain that were restricting the flow of endorphins and other beneficial chemicals in the brain. Now those channels in the brain flow more easily. I am happy to say that I can "feel good" when it is a nice day, instead of only feeling good because of a pink pill that forces "happy sensations" on even rotten days. The psychiatrist I saw never seemed to want to admit there was any real difference mentally, but I know better.
Thank you so much for sharing! It really touches my heart when i successfully share such an important message here on steem. Even if one or two people learn something, question something, or are touched or inspired by my writings, then i am satisfied. To be able to help on even a small level is so moving to me. I will most certainly look into those CDs as well!