I think the title is pretty self-explanatory as to what the video below is about. Just wanted to share. It is a part of my life, a part of who I am.
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Tag Archives: illness
Could Chronic Fatigue Syndrome Be Caused by Toxic Mold?
Hello everyone! So today I’m sharing a book review vlog video I made yesterday. For anyone who has Chronic Fatigue Syndrome, Fibromyalgia, or similar chronic illness, or who has a special interest in those subjects, this book might be something you would want to check out! If you have already read the book, let me know your thoughts!
A Whole New Look at the Right Brained vs Left Brained Debate!
I found parts of this book truly fascinating. Who knew that you could even have a stroke that completely shut down one half of your brain but left the other half functioning normally? Think you are truly left brained or right brained? Find out for sure here!
Dear Einstein, A Letter to a Beloved Lost Pet
Dear Einstein,
I’ve been dreading this for years. I knew when I chose to have so many cats that I would someday likely have to make a decision about whether to artificially extend one of your lives or try to save you from enduring unnecessary pain. Even so, when the decision had to be made, it was no easier, even though I had said for years that I would rather have to put one of you down than to see you suffer needlessly. This is the first time I have had such power over the life or death of a loved one and I hope it will be the last, although I know it probably won’t.
To be honest, you have been kind of a pain in the butt for most of your life. As a kitten you were a holy terror who had amazing powers of destruction. As an adult, you were a grumpy, angry cat who would often give a warning bite when petted the wrong way (pretty much anywhere but around the head). You were fun to tease because your reaction would be over the top within seconds. All I had to do was walk within a couple feet of you and you would start growling in annoyance. You were definitely the alpha male in this house and constantly reminded us of that fact. You reminded everyone of a regal lion, both in dignity and in your attitude of entitlement.
As we sat in the veterinary emergency room, making a decision about your fate, one of the vet techs came in and told us what a sweetheart you were. We laughed and said “she really doesn’t know you well, does she?” The fact that anyone would think that, told us how very sick you were. To be seen as cooperative and mellow just wasn’t in your nature. As I looked into your sad, blank face with tears running down my own cheeks, I knew I had to let you go. If we fought to keep you alive, you would have been miserable. I know you would have hated the long hospitalization, frequent medical procedures and forced medication.
Even had we went ahead with the treatment, the vet was blunt about the fact that you had six months at most to live and even that was highly unlikely. He told us the cost of treatment in dollars and that was certainly something that would have been a struggle for us, but the true cost to us was the misery we knew we would have to put you through just to keep you with us a bit longer. In good conscience, I couldn’t do that to you, because regardless of how mean and grumpy you could be, I love you with all my heart.
I admire your straightforward, take-no-crap attitude and the fact that you were never afraid to be yourself and stare any enemy down. I admire your intelligence…Einstein was definitely a fitting name for you. I loved the precious moments when you would be uncharacteristically loving and sweet (mostly when you were sucking up or asking for something). I think of you every time I open the door and you aren’t there trying to sneak out. It is these things, these precious memories that I will carry with me now that you are gone. I love you and miss you. Goodbye, my sweet Steiner.
How I wish there were sensory friendly hospitals!
Recently I was admitted into the hospital after two trips to the ER in the same day. At the first ER visit they decided I just had a virus, but when I got home I got much sicker, so sick that when my husband was ready to take me to the ER again, I couldn’t walk on my own and even collapsed in our foyer on the way out. At this second ER visit they noticed my pancreatic enzyme levels were through the roof, so they admitted me for pancreatitis. Once admitted, after more testing, they realized I had colitis and a nasty case of C Diff (an intestinal infection) as well. So unfortunately, I ended up staying there three days.
This was my first time being hospitalized since I was 10. Back then I was hospitalized for one night after being hit by a delivery truck while crossing the road. I sustained some internal bleeding and nerve damage from that accident, but was extremely fortunate to walk again as the doctors told me several times. I don’t remember much of that first sleepover in the hospital except that I hated the IV, got to eat lots of popsicles and had my mom room with me for the night because I screamed bloody murder every time she would try to leave.
This last hospital stay I definitely remember well though. And at times I thought I was going to lose my Aspie mind there. Hospitals truly are sensory hell for us autistics. The constant beeping noises may have been the worst thing, especially the machines attached to me that would beep loudly and relentlessly every so often (and it always seemed to take way too long for someone to come turn them off, even though I knew they were busy). I could hear other patients’ machines beeping too, as well as the noise of everyone watching tv and talking in the hallway. That kind of constant stimulation is not pleasant at all for those of us sensitive to it.
In addition to the noise, there was the unpleasantness of fluorescent lighting everywhere (which is a trigger for many autistics and can give us severe headaches or migraines and make us dizzy and nauseated if exposed for long). Next, you can add the physical discomfort of being hooked up to things. Now, I know that I had to be attached to an IV because I was extremely dehydrated and needed IV drugs, so even though that was extremely uncomfortable (and I really wish they hadn’t put the needle in the crook of my elbow) I dealt with it and didn’t complain. However, when they came in to hook me up to a heart monitor and told me themselves there was no real reason to do so, I was irritated. Eventually I just told them to remove it, that I was refusing to wear it. I was kind about it and they totally understood since none of them knew why I needed one at the time.
Another thing I hated about the hospital is the fact that no one lets you sleep. I was constantly woke up for more shots, blood tests, equipment going off, people being loud, etc. It is enough to drive you crazy! Sleeping in those hospital beds is also extremely uncomfortable if you are a side or stomach sleeper (as I am).
Of course, I do realize that some of these things can’t be avoided. Medicine is necessary and so are machines and tests at times – to help with cases like the one of http://sideeffectsofxarelto.org/current-xarelto-lawsuits/ for example. However, I do wish there were hospitals made especially for people with sensory issues. Maybe some that do a better job of limiting noise and avoided hooking you up to stuff you don’t need. Maybe other kinds of lighting in rooms for those with autism or sensory processing disorders. I know I’m probably dreaming here and that the funding is seriously lacking, but it sure would be nice. Being in the hospital is hard enough for us Aspies just because it is so out of routine and nothing is familiar there, adding all this extra sensory stress can’t be good and I doubt it is conducive to healing.
An open letter to churches and church people about chronic illness and pain
To churches and church folks everywhere:
Unfortunately, I have heard too many stories from fellow chronic pain/chronic illness sufferers about mistreatment at the hands of the church or church people. Some of these people even end up losing their faith or abandoning church altogether because they are hurt so badly by the apathy or mistreatment they feel from their spiritual family. I myself have experienced some similar things in the past and I would like to make a few requests for all churchgoers to consider, especially those in leadership positions:
- Please don’t ignore or mistreat those in your church with chronic illness or chronic pain conditions. Don’t think that just because they can’t always make it to church or participate in activities that they don’t want to. Don’t accuse them of just being lazy, selfish or antisocial.
- Please do reach out to them by making a quick call, a short visit, connecting on social media or dropping a card in the mail once in awhile. If you have never had a long-term chronic illness or injury, you may not know how lonely, depressing and rough it can be.
- Don’t think or comment that since they don’t look sick on the outside, they must not be sick or hurting. Many illnesses and injuries are invisible and even if a person doesn’t look like they are in pain, it doesn’t mean they aren’t. Many of us get so used to the pain that we don’t normally talk about it or even show it on our face anymore, but that doesn’t mean it isn’t felt.
- Remember that mental illnesses like depression and anxiety can be just as devastating and debilitating as a physical illness. Also remember that depression and anxiety often accompany a chronic physical illness or injury, which can compound the problem and make it even harder for a person to function normally.
- Don’t play doctor and tell us what you think is “really” wrong with us or tell us what we need to do to “fix” ourselves. Your intentions may be good, but most likely we have already visited various health professionals and tried anything and everything to try to fix the problem and find relief. If you constantly tell us what we “should” be doing, it can make us feel like it is our fault we are sick or in pain because we aren’t doing enough to try to solve the problem, which is normally entirely untrue. And NEVER insinuate that our illness/injury is caused by a lack of faith or that God is “punishing” us for one reason or another. First of all, that isn’t your judgement to make. Would you want to hear that when you are suffering? Treat others the way you would want to be treated if you were in their shoes.
- Lastly, try to find a way to “include” us even when we can’t be there. Share photos on FB or by email with us of events we had to miss. If we can’t make it to a special dinner, bring us by a doggy bag of the yummy food we missed. Let us know we are missed, but don’t try to make us feel guilty for what we can’t help.
When you are sick, but no one understands…living with CFS
“Painful Descent”, an expressionistic picture representing the downward spiral into chronic pain that many of us suffer.
Today’s subject is inspired both by my personal experiences with health issues and the experiences of others I know or have known that suffer from Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis). Although I myself have not been formally diagnosed with CFS, my doctor has ruled out many other autoimmune conditions and it is looking more and more likely that CFS may be the culprit. Of course, this post is one that many others who have an “invisible illness” will be able to identify with. Please remember that just because someone doesn’t look ill on the surface, doesn’t mean they aren’t suffering or fighting a tough battle.
So, what do you think of when you hear the words Chronic Fatigue Syndrome? Do you call it the “Yuppie Flu” like so many others have in the past? Do you think these people are lazy, faking it for attention or all hypochondriacs? I hope not, but if you do, maybe some facts might change your mind. For instance, did you know that fatigue is actually just one of many symptoms of CFS? In fact, you have to have multiple symptoms to even qualify for a CFS diagnosis. Here is a list of some of the symptoms of CFS that afflict most sufferers to one extent or another:
- Incapacitating fatigue for no apparent reason
- Extreme fatigue after exercise or exertion
- Sleep problems
- Pain in joints
- Muscle aches and muscle weakness
- Chronic infections that are hard to cure
- Sore throat and ear pain
- Severe headaches
- Constantly swollen lymph nodes
- Nausea and IBS symptoms
- Constant flu-like symptoms
- Mental fogginess
- Chest pain
- Numbness
- New or worsening allergies
- Sensitivity to noise, light, odors, foods, chemicals, medications, heat and cold
- Irregular heartbeat
- Hypotension, possibly fainting
- Dizziness
- Depression and anxiety
And those are just SOME of the symptoms! I personally have experienced all of the above symptoms, some worse than others, but I am still one of the lucky ones with CFS. I can still get out of bed without fainting and I can still walk and do some normal activities on good days. Some people with CFS can’t climb a flight of stairs to the second floor of their home and some sufferers almost never leave their bed or home (especially those who have severe hypotension and fainting).
Also, for those who think this illness is all in the head, did you know that there have been reported outbreaks of CFS in communities where hundreds of people came down with it all at once and suffered severely from it for at least 5 to 10 years? This research leads scientists to believe that at least some cases of CFS are actually caused by a virus that really messes up the immune system for some reason. Although some CFS sufferers do eventually feel better, only a small percentage will fully improve and never have symptoms again. There is also no tried and true treatment so far. Treatment options currently used include antidepressants, stimulants, exercise, nutrition plans and various other alternative approaches. Although some of these treatments do help some people, there are still many CFS sufferers who have found nothing that helps them. Perhaps that is why the suicide rate for those with CFS is high compared with many other physical ailments.
So, after reading all that, has your view of CFS and those who suffer from it changed at all?
