When we began this blog, it was to be geared towards traveling with the ups and downs of our illnesses along the way. Little did I know that our traveling would come to a stand still and our illnesses would take precedence over everything else. When I speak of traveling, we were traveling locally to state and national parks within two to three hours of our living area and all trips were free of charge based on my disability pass. We also never stay overnight because the drive is so short. For the time being, until we are back out on the road, I'm going to take the time to educate our followers on some of the medical issues that are faced on a regular basis and rarely discussed.
During the time at home, I began reaching out to groups in search of a better understanding of Ed's polycythemia vera and what others are dealing with on a personal level. I decided to search out other much like myself as well with similarities to my slew of issues. Little did I know what would happen next.
When I signed up for what may have been my tenth Facebook rheumatoid arthritis group, I met Ashlyn.
Ashlyn invited me to her own page she was just getting up and running. It is called "Rheumatoid Arthritis - The Next Generation" on Facebook. We immediately hit it off. We began corresponding via messenger on a regular basis.
Ashlyn lives in California and I live in Virginia, our time zones are way off, we make it work though. I honestly don't go a day without corresponding with Ashlyn unless one of us are in a horrific flare and need to sleep it off.
Let me tell you a few things about Ashlyn and why she is so important to the invisible awareness and chronic illness movement these days and important to me:
- Ashlyn is 27 years old, she suffers from rheumatoid arthritis and Hidradenitis suppurativa.
- She has multiple other symptoms not pertaining to these illnesses and continues to fight for answers of a proper diagnosis.
- Ashlyn is an advocate for herself and others.
- Ashlyn is not sitting back any longer and taking what the doctors are telling her at face value, much like me and my story, she knows her body, she knows there is more to her diagnoses than meets the eye and she is not backing down.
- Ashlyn is also an advocate for those whose stories have not been heard, she runs a podcast on her YouTube channel, Down to My Last Spoon, where she interviews different people that suffer from a variety and wide range of chronic/ invisible illnesses. The road to their diagnoses was just as long as mine and hers and keep in mind we are still fighting for answers.
- Ashlyn runs her own website.
- Ashlyn has begun to open herself up to actual video YouTubes, she is becoming more comfortable in her own skin. She wants answers. She wants the medical field to accept accountability for how they are treating us (chronically ill, invisible illness, misdiagnosed patients).
- Ashlyn wants the medical world and the entire world to see that WE are normal looking people and we do not look sick. On our bad days, you don't see us. Only the ones closest to us do. We hide from the world.
Ashlyn makes so many great points in her videos because she speaks the truth. Her guests often conquer because we almost all have the same story though our illnesses may differ. Not only are our illnesses is invisible, we are often invisible to doctors and the medical world. Chalked up to pain pill seekers, addicts, hypochondriacs, mentally ill and other labels they see fit to place on us. We are judged by friends and family on our good days because we don't look sick. If everyone knew what it took not to look sick, they would truly understand the hell we go through.
The fatigue is horrible. How do you describe fatigue? Everyone has different levels of fatigue, personally my fatigue is feeling like I have been hit by a truck and all I can do is lie in the bed, in a coma like state and not move until it passes. When it hits, I can literally sleep for 18 hours. Yup, I sure can. In fact I did it this week. The smallest things can cause fatigue in an individual fighting a chronic/ invisible illness. Lack of sleep, cleaning your house, running errands, stress, irritation, etc.
As Ashlyn talks in her first actual YouTube video, you have to find your "new normal" and accept it. You are going to have to listen to your body. We might not like it, but fighting it is not going to do you any good. Trust me, it only makes it worse. One thing Ashlyn mentions that really struck to the core with me was dissociating. I did this for a long time. I completely just pretended as if my illness didn't exist and when I allowed it to exist I just felt worse. I couldn't find a balance. I hated it or I ignored it. This was not a healthy way to cope. I didn't accept how to deal with it. I still don't want to accept it some days. I want the "old me" back, I don't like the "new me". I don't like that I can't do a full days housework in one day, it takes me a week now, sometimes 2 or 3. https://downtomylastspoon.com/index.php/2019/11/20/5-hard-truths-about-living-with-chronic-illness/
I despise the fact, almost on a weekly basis I acquire a new symptom, I think "oh great, is this a symptom of what I already have or something new rearing it's ugly head?" We know I have an overlap, an overlap of what though? No answers there for sure. Or am I a hypochondriac?
In conclusion I would like to add that it's important to talk to people who are dealing with the same things you are dealing with, these need to be positive people, these people must want to make a change, have hope, make a difference, not just have pity party after pity party, if that's the case you will likely end up depressed.
Yes, we all have our days and as fellow sufferers, it/' okay to breakdown and listen, but encourage. We (Ashlyn and I), are trying to bring awareness, not discourage. We are trying to show the world, although we look normal, we suffer, we fight the medical system, we are treated poorly by doctors, we are doubted, we are not fully diagnosed and there are thousands of others out there just like us, some worse off. We want answers and we want help, help to feel better. We want ALL of our fellow suffers to live normal, not the new normal. We want cures, not band aids.
I ask that you please stay tuned for more information on invisible illness awareness and please follow Ashlynn on her YouTube site at Down to my Last Spoon as well as her website https://downtomylastspoon.com/
If you have a story about chronic illness or invisible illness you would like to tell, please email me at firstname.lastname@example.org or reach out to Ashlyn via her website https://downtomylastspoon.com/
Here is a List of SOME Invisible Disabilities https://www.disabled-world.com/disability/types/invisible/
Chronic fatigue syndrome
Circadian rhythm sleep disorders
Ehlers Danlos Syndrome
Fetal Alcohol Spectrum Disorder (FASD)
Hereditary Fructose Intolerance
Inflammatory bowel disease
Irritable Bowel Syndrome
Multiple Chemical Sensitivity
Reflex Sympathetic Dystrophy
Repetitive stress injuries
Temporomandibular joint disorder
About 10% of Americans have a medical condition which could be considered an invisible disability. 96% of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device and act as if they didn't have a medical condition. About 25% of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge.
Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way.
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