In the meantime, I wanted to post something to keep this blog alive and kicking, but I'm in a ton of pain and have the worst brain fog and fatigue so it makes writing very difficult.
Thus, this will be short, and probably full of silly technical errors. Please forgive any that do appear.
In the going on 3 years now that I have been chronically ill, I have done a ton of research related to the matter. Some of my favorite sources are forums, where one can read the experiences of other patients.
Not only do these stories provide unique and invaluable medical insights, and help me maneuver the complex health system more efficiently, they also validate my feelings. To know one is not alone when you feel desperately so is like giving water to someone wasting away in the desert. It could save a life.
That is probably the most tragic common theme amongst the chronically ill. The tendency for loneliness is powerful beyond description. Over the last few years, I have felt so lonely and scared I was afraid I would go mad with grief and despair. That is why I got my cat, who turned out to be badass because she is a Norwegian Forest Cat - which means she is smart and can climb down trees frontwards and likes water (and all kinds of other fun facts I won't bore you with now)! I strongly suggest a companion animal if you are homebound and/or disabled, especially one that is smart and will get tuned into your moods and needs. Freya kitty knows when I'm not feeling well and gives me snuggles when I need it, she also knows when I'm sleeping too much and will harass me til I get out of bed and play with her.
 |
| My gloriously fluffy Forest Cat (Skogkatt) and Companion "Freya" |
Anywhoos, enough babbling about my super awesome kitty friend.
Back to the serious stuff.
Its damn near impossible to understand someone who is sick unless you have been there yourself.
My research has shown that those suffering from the onset of "invisible diseases" like Lupus, MS, RA, Fibromyalgia, and other immune mediated illness, are grossly misunderstood. The odds are stacked against us; we have a 50% chance of having a doctor give up on us (I've had a few), an equally high chance of being misdiagnosed with a mental illness (I've had a doctor try to shove Zoloft down my throat, even after a Psychologist announced my symptoms were not psychosomatic), and we have a 75% chance of losing our partner/spouse in the time it will take to get diagnosed, which is an average of 7-10 long years.
These statistics blew my mind when I first came across them last year (Or maybe it was the year before? And of course I can't find my source now. Dang brain fog! I'll find it again and post it when I do).
But I can attest to the challenges that the onset of a debilitating illness can create in your personal life, especially with the one you love.
My boyfriend and I had just moved in together a few months before I started getting really sick. Within 6 months I was on an extended medical leave of absence from my blossoming career, which I wound up having to walk away from just a few months after that. As money and health problems continued to build up, we found ourselves being overwhelmed by the situation. Its like being caught in a rip tide and no matter what you do to get out you keep getting sucked back in. We were starting to argue. I was so stressed out about my deteriorating health I couldn't focus on anything else, any of the "real world" stuff. This left my boyfriend to carry the burden of acting as head of household, my caregiver, and my boyfriend. The stress started to create cracks and rifts in our relationship, and we were headed for destruction. We would have crashed and burned had we stayed that course.
But instead of becoming just another statistic, we were able to make our situation better.
To an outside observer, it would appear that nothing's changed.
We are still broke. I'm still sick. I'm still sensitive to all forms of UV light. I'm still unable to work. We still have a host of challenges to overcome.
So how have we come so far together, and learned to smile despite the pain?
When you find yourself in a situation you're unable to change, "don't wish it were easier, wish you were better." We delved into personal development and psychology and all kinds of studies. I will list specific titles and so forth that we have found especially helpful in a future post.
Change your mindset and you can change your universe.
Learn to be truly grateful and you will realize you already have everything you need.
During times of great struggle, love should bring you together, not push you apart.
Keep laughing, always!
I could keep spitting similar anecdotes, but I will finish this with a music video I recently saw for the first time. It does an absolute perfect job of illustrating what I'm trying to say, and after watching it I knew I wanted to include it in a post. The couple makes me think of my boyfriend and I; their situation is a beautiful metaphor for how changing our perspective has changed our world. Its so good, it makes me cry my eyes out.
I hope it touches you also.
What are some of your favorite methods for overcoming challenging situations?
*Love & Light*
-Renata Carmen
Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)
