It’s been a year
I had my accident April 26, 2021. Thank God I was just approved for SSDI on my first try.
It’s a hard situation because it’s an invisible illness and no one gets it. My husband least of all. No one respects that I feel sick or dizzy or nauseous or out of it or that I can’t do math anymore or remember shit.
I can’t drive very well but because my husband refuses to be involved won’t drive me anymore, I do. It’s kind of funny. I take interstates where I can put it on cruise control and I don’t have to make so many decisions. LOL
I used to knit And loved it but it’s hard for me so I color and, of course, my husband makes fun of me.
I’m terrified of falling.
I have surgery in two weeks to fix my neck (c4-c8) - stuff I can’t even pronounce but I remember corpectomy and discectomy. I’m absolutely petrified.
I have a 29 year old son with autism who is devoted to me and depends on me. He helps me so much. Thank goodness for him. I dummy know what I’d do without his love and support even though I know he doesn’t get it either.
I can’t read anymore but woohoo for audible right???
So that’s my deal, sorry to sound so negative. It’s just the way it is.
Part 1 of 4 MISUNDERSTOOD
Most people don’t understand how often I go under with my #ChronicIllness , how I pay dearly for any days I’m active, that I only have 3 functional hours a DAY without debilitation creeping in & how frequently I can do nothing but rest and recover. That leaves this driven woman so frustrated and with mountains of life and responsibilities to catch up on for days after. If I don’t have another flare then I am blessed enough to get back to any other income generating or giving activities. And then I’m not necessarily ready for the aftermath on my body of doing so. I often push through, but in order to not go insane from pain and debilitation it is in my best interest finally in my life NOT to.
All I’ve done is push and try and comments I receive here about being young and lucky (I am 44)…or people thinking I’m lazy or anti-social… or haven’t tried hard enough to get well… or that I can’t keep my promises… because they don’t realize how sick I am is literally heartbreaking. Yes, I have done about every holistic remedy over the past 18 years, continue to be on powerful herbs, detox constantly and work with an excellent specialist in Orlando, FL every 3 months to fight for my health. I have worked extremely hard and #LymeDisease has stolen so much from me ie. any possibility of having a successful #Relationships and starting a family. Then, I learned you can transmit #LymeDisease through the placenta so there went that! I’m finally in a place where I can have quality of life and literally living is worth it. I have SACRIFICED to get here!! My horses have been saving my life daily over the past couple of years because I have to get out, use my muscles, and take care of them every day. I know my heart is weak so trudging uphill here with the wheelbarrow might just be saving my life even if it sounds like I can’t breath (I often have severe air hunger). People are so blind to the fact that my doctors and I ARE doing so much right or I would be SO MUCH worse. I can have moments and half days without suffering which I never had before. People always tell me they either know someone who had Lyme but are better so I must be missing the magic cure, or that the person they know has it really severe, not like “my mild case.” It’s ridiculous. My life is constantly busy doing on the days I can, catching up, or resting to heal to catch up again. I hardly have any free time or feel well enough to socialize. That should not receive criticism. I am not a burden on anyone and don’t need pity or help. JUST understanding and being seen for who I am would be appreciated.
#LymeDisease undiagnosed for four years set into effect a cascade of powerful physiological changes that can never be undone that ruined my adrenal glands (this is a huge deal), left me with zero energy, hormones that I have been trying to replace, left my body unable to process environmental stressors, mold or tolerate heat, left me almost allergic to the sun, makes my Epstein bar which is mono viruses ???? constantly reactived even though I have to take antivirals daily, the list goes on and on. #LymeDisease starts up #PostconcussionSyndrome in me very often which has the effect of a #TraumaticBrainInjury . People keep looking at me judgingly and ask why I cannot get well. Having #LymeDisease and treating it right away is nothing like Chronic Lyme, it being left in your body undiagnosed for four years to cause destruction. It does irreparable, irreversible damage to your other body systems. SO many precious fellow warriors are in my shoes with this lifelong disease and a google search on the internet will reveal the horror of it. I struggle to take about 20 medications a day, get concoctions down and try to do oxygen ozone treatments in my house just to stay functional. Trust me, this is not what I want to do with my time, energy and brainpower, or finances! Yet, people still judge me every rare occasion I get out, look at me and ask me things like, “what are you doing with your self these days?” or “we thought you were better.” Or “We never see you.” As if I have a choice and am laying around with free time.
My words falling on deaf ears and being so misunderstood is cruel. I am completely honest and transparent, telling people that I am chronically ill. The entire reason I had to leave my family and friends and move out here is because I lost the ability to work and the Florida environment was keeping me completely debilitated and in bed. Yet they constantly do not hear it. Just becau
I've been bumping into walls since 1994, lol. I also struggle with my fine motor skills as well, always have. Anyone ever have occupational therapy as an adult? I went briefly a couple of years ago, and I am considering going back to deal with #SensoryProcessingDisorder related issues and my coordination challenges.
In other good news, my #PostconcussionSyndrome symptoms have reduced/are practically nonexistent!
What my brain feels like most days
Anyone here ever have a concussion or mild #TraumaticBrainInjury ?
This week I slipped on ice while walking my dogs so I am limiting my screen time but I did want to come on here for brief periods of time... I read that getting a second concussion tends to take longer healing than the first, regardless of concussion severity. I wonder if this is true. Would love to hear from the Mighty Community!
Why am I hurting my marriage