Hello, my intrepid warriors! I’m back for another raw, yet inspiring post. I know many of you out there have been sick for years. Some of you darlings have been struggling your entire life with your autoimmune disorders and chronic pain (I don’t know how you do it!), while the rest of us run the gamut along the timeline of how long we’ve been struggling. I’ve been dealing with my chronic illness for 8 years now. It took me about 4 just to get a diagnosis for three of them and I’m still trying to get the diagnosis for Crohn’s, even though they are treating it like Crohn’s, say it acts like Crohn’s, and it’s unlikely it is anything other than Crohn’s (wait for it) yet they cannot be completely sure that it’s not something else.
In the meantime, we try to do everything right to help ourselves through our illness. We research our illness like the devil so that we eventually become more informed than any doctor, frankly, I think many of us deserve honorary degrees given the depth of knowledge we accumulate. But we don’t just research. Let’s face it even when you are investigating outside WebMD where you are looking at possible death for most of your symptoms (mostly kidding), it is exhausting dealing with the volume of information for out there and so many differing opinions on what those symptoms could mean. You balance this out and tap into how your body works and how those symptoms behave inside of you and what it may mean. We might as well become Sherlock Holmes the way we are trying to connect all the dots and backtrack to the beginning source of all our problems. I think every one of us believes it had to have all started with one thing. Like something in our lives or body had to catalyze all our illnesses and health problems. That it couldn’t just be a random coincidence that at age 36 (just a random age I’m throwing out there) everything suddenly just tanked. I know I am one of those people. I sit there and wonder for hours, like that cat meme where it’s all the figures as he’s thinking how to make the jump? Yeah, that’s me thinking about how this all started. It had to originate with something.
Next on our list of things we try to do right, is keeping ourselves healthy. Many of us endeavour to eat healthy, exercise and even meditate in hopes that one out of the three will lift us from the depths of our misery. But does it? For most of us, the answer is a resounding no. Despite our best attempts at losing weight to make the pain better, eating healthier for various reasons from simply basic health reasons, to boosting our immune system, to even autoimmune guided diets. There are so many reasons people find themselves perusing diets thinking it will help them and it’s devastating when it doesn’t help. Some do reap some benefits and I am not here to tell you not to look for a diet that might help you. Diets can help you even if they don’t help your autoimmune illness. If you are overweight it can help your overall health to lose weight and it can help arthritis and other reasons that some might have chronic pain, to lose excess weight. But if you are going into things looking for a way to alleviate your chronic illness you simply may not find the answer you are looking for. And it’s very frustrating you can try and try to lose weight, be healthy, exercise if you are able and still not feel once ounce better. And you begin to wonder to what end is this all for.
Oh! How about sleep? Chronic illness and chronic pain are notorious for robbing our lives of sleep. We look for ways to sneak more sleep into our lives any way we can and sometimes we can and a lot of times we can’t and even if we can, it may never ultimately help the situation. You can get the 8 hours of sleep and still find yourself smack dab in the middle of a flare. Or you can sleep 14 hours or longer with naps, or be the reverse like me, where sleep is constantly elusive and then you read things like “If you don’t get your sleep, your overall length of life is shortened.” Holy crap on a cracker man! As if I don’t have enough to worry about, I am going to die earlier than expected just because I don’t sleep! That is a lot of stress. And stress, as we all know, can contribute to lack of sleep. And if you have OCD like me, you end up stressing about the stress you are feeling because you can’t sleep, which plunges you further into not sleeping and yeah. It’s a mess. It makes you feel like you can’t do anything right when you are trying so very hard to do everything right.
You can still do everything right, or try to, and suffer from the plague of symptoms that is your chronic illness. It isn’t you, it simply is and you need to remember that some days it’s just out of your hands. You can continue to do what you do to try and alleviate symptoms but forgive yourself and your body if it fails. I always try to stress that when I write is forgiving your body. Your body is ultimately no longer in control. The chronic illness/autoimmune disorder is riding at the helm and your body is like hostage-taking orders. So, if you wake up feeling like crap and all you want to do is sleep and you can take the day off, or maybe take a nap sometime during the day, go for it. Indulge and do what is needed to help yourself through the symptoms. It’s okay.
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On December 16th, I was diagnosed with COVID-19. Almost 20 days later and I’m still feeling the symptoms of the illness. I have not gone to get tested yet because up until a week ago I was still running a temperature of 101.5. I figure if my eldest, who was positive with no symptoms only just now tested negative after two weeks, I’m likely not negative yet having active symptoms up until a week ago although I know you can test positive up to 3 months without having symptoms. Since I do not work outside my house, there’s no real imperative reason to get tested although inquiring minds would like to know my status. Such as my parents, who both have tested positive and my father who spent some time in the hospital with COVID-pneumonia. Thankfully, he was treated and released. We could not have asked for a better outcome with that for him, given his age of 84 and health issues. I decided that the Croatian people are strong.
Having survived COVID-19 should make me happy and in many ways I am happy. I am also profoundly grateful that nothing went wrong and that I managed to fight the illness at home and not have to go to the hospital. Two rounds of antibiotics for bronchitis that threatened to become pneumonia and a relentless fever as well as the fatigue, that even now cripples me, and yet I managed to fight it at home. It wasn’t easy and at times it was downright scary. The headaches, nausea, the coughing that scared me and the fever that left me freezing all night were things that I debated on going to the hospital for. Instead, I chose to battle it at home more concerned that the hospital was a worse place than my bed and that I would be taking a much-needed bed from someone who really and truly needed it. I purchased a pulse oximeter on the recommendation of my doctor and kept track of my oxygen. Had it dropped too low, I would have taken myself to the hospital, but it never did. The lowest it went was 92 and that was when I used my asthma inhaler and my diffuser with eucalyptus and peppermint essential oil to help with my breathing. I was lucky that it was enough to help.
However, I am still dealing with the repercussions of having COVID. I am still dealing with the symptoms and like everyone else touched by this disease, I do not know the long-term effects, especially on my other health issues/autoimmune disorders. I am worried about the long-term effects and what it might be doing to my body that I do not yet know about. The main thing I am dealing with at the moment is epic fatigue. I have dealt with fatigue before COVID, because of my autoimmune disorders, but this fatigue leaves them all in the dust. I sleep late, I nap all the time and I go to sleep early. I feel like I can’t get anything done because I’m sleepy all the time and my brain is fuzzy. It sucks. Big time.
If you get COVID here are my 5 Tips:
Stay Hydrated: It’s so important to keep drinking water, herbal teas, ginger-ale or Gatorade or Vitamin Water. Being sick can naturally wreak some havoc on our bodies and then add symptoms like a fever and cough and these can rob the body of nutrients you need to get better. Our body is made of 60% water. It’s only natural to want to replenish that water and electrolytes if you have other symptoms like diarrhoea or nausea and vomiting. Hydration is important in keeping our core temperature balanced and being dehydrated can make a fever worse. Remember, water can come from fruits, soups, teas and popsicles if you aren’t feeling like drinking a whole glass of water. Just getting a little bit in is better than nothing at all.
Pain medication/fever reducer: Make sure you have this on hand right next to you at all times and are taking it as directed, every 4hrs or so. My fever was notorious for disappearing during the day and raging at night. We researched why and it has to do with the amount of cortisol in your body that elevates at night and causes the white blood count to rise. So the illness is being fought by the white blood cells at night which causes you to run a temperature and feel miserable. I was like this straight for a week, just freezing at night and going crazy. Tylenol is your best bet, there is something in Advil and Motrin they advise against taking while you have COVID.
Ice packs: These are a life savour for both the headaches of COVID and the reducing fever. I used about three at a time. One for my head and one under my neck and back to help with the fever. It is not pleasant when you are freezing with 101.5, but it helps bring the fever down in combination with the Tylenol and ultimately you end up sleeping better. Keep several around if you can or use some old veggie bags. They will help in a pinch and you can replace them.
Thermometer: You need to take your temperature regularly because every time you run a fever you need to continue to self-isolate. Once you have not run a temperature for 24-36 hrs., you are considered no longer infectious and even if you are still exhibiting symptoms, you can go out with a face mask. So, please take your temperature regularly so that you can both treat yourself, and monitor your progress.
Vitamin C, Turmeric and Ginger: Turmeric and ginger have incredible anti-inflammatory properties and are high in anti-oxidants. Ginger can help fight off colds and relieves stomach related issues. Vitamin C supports our immune cells and in combination with a diet rich in fresh fruit and veggies will protect the body from foreign invasions.
I have never been one to procrastinate. Never. I am the kind of girl who always got her assignment done in school early. I plan for things. I plan for research and I have time-tables. I like to know how long it will take for me to research before I sit down to write so I have everything in order. I make menus for the week and sometimes for the entire month if there is a surgery that I have to plan for. The point here: I am a planner, not a procrastinator and what chronic illness sometimes creates is a huge procrastinator. Here are some reasons why.
Showers: My Nemesis
Once upon a time, when my world was lovely, I could luxuriate in the bathtub or a long shower. I loved turning up the music sometimes, singing my favourite songs and just relieving some stress. There’s none of that now. Besides the fact that the simple act of taking a shower exhausts me, it’s compounded by the water hurting my skin and making me itch violently and for unexplained reasons. It could be a combination of the fibromyalgia’s allodynia that makes my skin sensitive and susceptible to pain, and my own pressure and cholinergic urticaria that causes unexplained hives when the water beats down on my skin. Whatever the reason might be, showers have now become my least favourite activity and one which I put off because it makes me feel so badly. I hate the way the procrastination makes me feel too: dirty. Which usually sets off my particular brand of OCD, which then causes a spike in my anxiety. I hate that feeling. I lament those days when I could sit in the bathtub for an hour and turn into a prune. Even if the itchies were to go away there’d still be the exhaustion that comes after the shower. The deep exhaustion that leaves me so tired I need to go sit down for a while before attempting to dry my hair. And I dry my hair sitting down! I feel like I’m 100 years old and I’m only 45.
Blog Posts: On Hold!
I love writing. My perfect world consists of a cabin, and writing, drinking hot tea and not much else. But with chronic illness and chronic pain, there are days I procrastinate writing or weeks where it gets put on hold because I am feeling so badly or where I’ve gotten so little sleep that I know stringing two sentences together is going to be a challenge. It bothers me when I procrastinate. Even when the procrastination is not really procrastination but time off, for medical reasons. It makes me feel like I can’t even do one thing, like a “normal” person. And I have to sit down with myself and tell myself sternly but gently, that no, I’m not “normal” but who is? We all have things going on with ourselves that present us with challenges. The art of living is learning how to work with these challenges so that we can live our lives the most abundant way we can. And if that means My work schedule is one week on, one week off, or three days on two days off or however it may look and however unconventional that maybe? So be it. As long as I roll out articles that my readers are happy with, I will keep on doing it because it makes me happy and gives me purpose.
Food is Divine: Unless You’re Gut is Fuc**ed
I love to cook. I love to bake. Bread was once my best friend. Pastries my lover. The holidays had me salivating and planning for months. What to cook? What to bake? Cookies were sent to relatives and friends for gifts. Now, where I once saw food in a vibrant palette of colour, it is grey. I procrastinate with eating and cooking and making my weekly menu for meals. It is no longer with the same enthusiasm that I sit down to eat with the family or go to eat with my husband, and the holidays have grown dismal and lack the flavour I was once accustomed to. This is all because of my gut issue, partly related to Crohn’s and partly to other contributing gut issues like non-Celiac Gluten Intolerance that have made my eating experience something I don’t know what to do with. Cooking for my family was an extension of my love for them and I don’t know how to do that anymore. Eating the food cooked is no longer an enjoyment. I feel like chronic illness has stripped away from me something dear, that made me who I am.
To Sleep, Perchance to Dream: Unless You’re in Pain
Ah, to sleep. This has been something that has eluded me since I was a youngster. Being the INFJ I am, I can remember reading my mother’s Reader’s Digest, and catching this article about how keeping your room cool, having lavender on your pillow and your bed at the opposite end of the open window so you could feel the breeze would help you sleep better at night. I have been struggling with insomnia for a long time. 35 years to be exact, though these days my insomnia is the result of pain and I procrastinate for bed because I most of the time I lie there in pain counting exploding sheep. They explode because in the midst of my trying to peacefully try and breathe through the pain, I will suddenly get a lightning bolt down my leg and there will go the peace and the sheep with it. Inevitably, I avoid the whole situation by not sleeping. But, not sleeping isn’t exactly great coping skills for someone with chronic illness or someone with insomnia. You need sleep but when you are in pain and you have tried everything, or think you have and haven’t gotten adequate results, it can be more than frustrating. That’s when you just avoid everything. Goodbye sleep. It was good knowing you.
All of this is part tongue-in-cheek but truly heartfelt. Your life changes when you are faced with chronic illness and there may be many reasons you procrastinate. It’s not just an unwillingness to do something. I feel a lot of times that we simply aren’t understood. That people haven’t tried to see things from our perspective or taken the time to think about why we might be the way we are. It’s a very rough road we’re on. One that unless you’ve travelled it, it’s unlikely you will ever truly understand it. But it shouldn’t mean that you can’t try and empathise a little. Maybe something cheeky, silly but still real, will help.
It’s Not as Easy-Peasy as it Seems
As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.
Difficulty Being Assertive with Your Doctor?
You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?
Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate.  Wagner, 2019
Non-Negotiable with Doctor
Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.
Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.
Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.
Tips for a Good Self-Advocate:
Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.
Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.
Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.
Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.
 Wagner, 2019
Prepping for a Concert and the Flare to follow
Every Spoonie out there understands the consequences of doing too much. I think most of us try to balance work and home and any fun we do so it won’t stress out our body and we won’t have a flare. But sometimes flares are unavoidable. There are things in life we have to do, even fun things that we want to do and we weigh the options and go for it despite the likelihood of a flare. For instance, a recent early Anniversary gift from my hubby that I have known about for months: Evanescence and Lindsey Stirling tickets. The concert was this past Saturday and I’m still recovering. It was well worth it the seats were amazing and I enjoyed every minute of it, but the venue was difficult for me though it is a beautiful place. It is outdoors, the grounds are sprawling and unfortunately, I found their accessibility lacking. Handicap parking was first-come-first-serve and even our very early arrival, several hours before the first set, we still found nothing. The venue is out-doors and from the drop-off point to the actual pavilion where the concert takes place was quite a walk for me with my cane. It is also August, in Texas, which means it feels like you are just a few inches from the surface of the sun and I fall into a category of people whose body is not agreeable to the warm temperatures. I am not sure if I am in the minority, especially when you are talking about the heat here in Texas, which I think could offend even the most tropical of people but, I seem to fare better in cooler weather. I think I must have sweat about a gallon, no joke, even after 8pm when it was dark, it was still around 85 ̊. Even after living here almost 23 years, the heat just takes your breath away. You don’t get used to it, you just tolerate it and are grateful that most of the time you are in a/c. After the concert there was some difficulty in picking me up because I had wandered too far in migrating with the throngs of people leaving and I ended up having to walk around quite a bit in meeting up with the hubby, who ended up having to park in BFE. This post is a combination of two things that occurred to me afterwards: Things you can do to ease a flare the day after and, how you can prepare for an event (like a concert) better than I did. I don’t go out much, in truth, so I suppose that is why I’m pretty shoddy at preparing. But where I fail, you, my friend will reap the benefit of hindsight!
5 Ways to Prep Before a Concert
1.) The Venue: Do your homework! You can’t determine where a concert will be held but you can recon the venue so when you show up it’s not all a big -inconvenient- surprise.
2.) Parking: Make sure you know where the disability parking is if you are able to use it. If you don’t have a placard or plates, try to find the most convenient place to park that day.
3.) Call the venue: This one is the most challenging for me. I don’t like feeling like some prima-donna who needs special treatment. Don’t be like me. I mean it. I may have suffered quite needlessly all because of my own stubbornness something that may have had a solution had I called. Having a disability and needing special accommodations doesn’t make you spoiled. You are just wanting the same, reasonable access as everyone else. So, call the venue and see if they offer any services that can assist you in getting around better.
4.) Clothing: Make sure you are comfortable for the event and season of the event, if it is outdoors. I must have changed four times before I settled on something that I felt would keep me the coolest and I am grateful I did. The black leggings that was my first choice, while comfy, would have been the death of me in the heat department. You want to enjoy yourself so don’t sacrifice comfort for style.
5.) Ear Protection: This is huge. Typically, we always bring ear protection with us but this time we forgot and by the end of it I was not alone in my ear pain. Not to mention it triggering a migraine that luckily, I had brought meds for just in case. We use the squishy ones for the shooting range and they do not impair your hearing of the concert, just your ears. Even two days later, I am still experiencing ear pain.
I’m sure there are more ways to prep before a concert that I haven’t addressed. Please, feel free to share them with me.
5 Ways to Self-Care the Day After
1.) Rest: This is the biggest and most important thing you can do for yourself. There is absolutely no shame in it and your body will recover faster if you take the time out for it instead of just trying to jump back into life.
2.) Crock-Pot-Rescue: When you plan your meals for that week of, make sure to include a crock-pot dinner, or something equally easy, for the day after the concert. This is part of self-care and resting.
3.) Netflix and Cuddle: Or Hulu, or Amazon or Crunchy Roll! It doesn’t matter, just grab your favorite cuddle bug, sprawl out and indulge in your favorite movie snack and relax. It’s amazing what cuddling can do in combination with relaxation.
4.) Bath or shower: Grab your favorite essential oil or bubble bath and sink in. If sinking in is not an option you can still drop some essential oils into the shower and just luxuriate in the hot water and soothe muscles and psyche while inhaling the fragrant scent.
5.) Pamper yourself: Pick that one favorite thing you never indulge in and do it. It doesn’t mean you have to go out anywhere either. Love getting your nails done? Grab your favorite color and set up a comfy spot and paint your nails. Never have time to read? Here’s your chance! Make a nest on your bed and curl up with that book you’ve been meaning to get to. Sky is the limit and remember, you don’t need to wait for a flare to do these things either. Self-care can be any day of the week.
Thanks for your continued support: