There are some out there in the land of healthy who believe that because we’ve been in chronic pain and chronically ill (or perhaps one or the other), for X- amount of time, that we should be used to the constant torment. I’m here to tell you that this is a false-hood. We don’t become used to our situation simply because we have been in the same situation for years- we adapt. Adapting here means that we do things to make our lives easier; we adjust how we sleep in order to attempt a restful night, we shorten our work-days in order to ease the stress of long days on bodies that are already stressed from illness or pain; we change our diets to attempt to quiet the wrath of symptoms for digestive disorders; we take supplements in attempt to strengthen our weakened immune systems; we do so many things in a futile attempt to lessen the wrath of pain and illness, but we never, ever get used to it.
In some ways I can understand the logic behind that particular thinking. When we do things over and over again, for example exercise, we become accustom to how it feels. Eventually, we aren’t as sore as we were the first time, we hit the gym or when we attempted yoga for the first time. Our muscles become accustomed to the rigors of lifting weights or doing planks or squats. But chronic illness and chronic pain are just not the same. It doesn’t matter how many times I get a migraine, it’s always like the first time. It doesn’t matter how often my Crohn’s flares up; it always feels like an assault on my intestines. I am in chronic pain all the time from the fibro and back issues I have, not to mention the pain from the rheumatoid arthritis and while some days might be a little easier, it’s never something I get used to. It’s frustrating and painful and it simply takes so much out of you to just try and function every day. I am always finding myself lamenting the body I used to have (and no, I don’t mean figure-wise), and wishing that I could do the things and be the person I was.
I want people who don’t suffer from chronic illness and chronic pain to know that we never become used to this state of being. That every day is a challenge to simply function on a semi-normal basis. That you don’t have pain and symptoms from your chronic illness for 15 years and just become used to it over time. Our bodies are not static and every day presents new challenges and sometimes, new symptoms and frustrations. Pain medicine is something that doesn’t always work or only takes the edge off the pain leaving you at a seven rather than at a nine. It’s having side effects from the medication that is supposed to be helping you, or having to determine if it’s worth trying certain medications because of the side effects associated with that drug. It’s missing out on going out with friends (if we have any at all, because most people become tired with waiting around for us to feel better), it’s missing on going to events because we suddenly flare up, it’s the anxiety that we have because of our illness and pain (which exacerbates anxiety that we may have already), and it’s the surgeries that we may have in order to try and help our situation that sometimes ends up making us worse. No, we do not ever get used to it.
In finality, I offer this: if you are a family member or friend to someone suffering from chronic illness or chronic pain, try to understand them better; try to understand what it is they are going through better; be a better friend or sister, brother, mom or dad. Our lives are complicated and messy and we didn’t ask for this.
Thank you for reading, sharing and following my blog. It really means the world to me.
We take a lot of things for granted in our life. Some examples of things we’ve taken for granted recently- going out to the store whenever we want, going to school, work, out to eat or (without a mask). Movies and concerts were cancelled and other public events that have been tradition were also cancelled. We’ve taken these things for granted never thinking how easily they could be stripped away or reduced. However, for those of us in the chronic illness and chronic pain community, life didn’t change very much during this crazy time except for the necessity of wearing a mask. At least for myself, I only felt a little bump of change to my life, whereas healthy people felt a definite jolt of change.
Why do we take certain things for granted in the first place? Sometimes, it’s just because a certain thing has always been there. Many people take for granted their parents, because they are always there- until they are not- and then we realize what we have lost. We take for granted our freedoms and liberties because they are always there, until suddenly we are forced to walk around with masks, and are restricted in our movements even if it is for the safety of those around us. We’ve heard the chorus of many who feel their personal freedoms have been violated. But, what about your health? Is your health something that you take for granted? Is it something you feel will always be there? Or maybe you don’t feel like there is a threat until you are much older, say your 60’s or 70’s?
If you are lucky to be healthy, take it from someone who isn’t, to not take your health for granted. I can’t say that I was ever “healthy.” I came into this world with sickness and I grew up with asthma, chronic sinus infections, allergies, chronic migraines and chronic bronchitis. It felt like every time the leaves began to change, I was already sniffling and sneezing, which would, in turn, affect my asthma and then would invariably turn into a sinus infection that would eventually manifest itself into bronchitis. Later on, I would develop structural issues; ankylosing spondylitis, rheumatoid arthritis, psoriatic arthritis, gluten intolerance, Crohn’s and a bevvy of mental health issues from anxiety to bipolar. Most days I accept that this is my life. Most days I power through doctor visits, blood work, infusions, tests, pain and symptoms that keep me from ever feeling truly great. But there are those days that I lament my body and its various weaknesses and I wish with all my heart, that I was healthy.
I’m very active in social media because of blogging and I see the active lives of many people I once knew or currently know, who are my age or maybe a little older or younger and I wish I could be doing some of the things they are doing. I wish I was able to go hiking; I wish I could go running like I used to; I wish I could plan a vacation without worrying that my health will get in the way of me and my husband having a good time; I wish long car rides didn’t hurt me so we didn’t have to stop so much on my account; I wish I was able to be more active and I wish there weren’t so many days that I dreaded getting up. It’s painful to know that so many things you once enjoyed have been stripped from your life. It’s difficult to reconcile how things were to how things are.
If you are healthy, don’t stop taking care of yourself. Don’t become negligent of your health because you think you have time. I may not have been in stellar health to begin with, but I certainly never thought things would evolve to where they are now and it was always something I envisioned would happen when I was old, like my grandmother. If you have your health, fight to keep it for as long as you can. It’s true that you can do everything right and still find yourself with some illness, but I figure it can’t hurt that you’ve done your best to take care of yourself. Life is too short as it is. Live your best life and keep yourself as healthy as you can so you can enjoy it until you are a ripe, old age.
Oy. If I had a dollar for every time, I blamed myself for my illnesses and for passing some of them along to my children I’d be rich. No lie. I think we all do it at some point and some of do it more than others but it’s definitely not healthy. I’m a strong believer in your mind and body believing what you think and if you are actively blaming yourself, I think that your mind will eventually believe it and that is not good. You are not responsible for an illness that was never your fault to begin with.
Compassion: Yes, you heard me correctly. You need to have a little compassion for yourself. It might be easy to feel compassion for others but, somewhere along the line you stopped feeling it for yourself. Take a deep breath inward and remember you are human too. Remember that your illness isn’t something you asked for and that you deserve compassion from the person that matters most, yourself.
Mindfulness: There’s recently been an influx of talk about mindfulness. In the media, commercials, everyone is talking about it and they should be. I believe we become better people when adopt a mindful attitude, especially with ourselves. How do we adopt mindfulness? I think slowing down is important. Our days can be cluttered with appointments, kids, significant other and work that we forget about ourselves. Being grateful and giving back to others is important too. Sometimes we get so wrapped up in how bad our illness is that we forget about what we have in our life that makes it worth living. We forget about the things that make us happy and it’s important to stop, take a breath and remember those things that give us purpose. Contributing back to the community can help us be mindful of what we have. Volunteering is a great way to help your mindfulness activity and you can volunteer just about anywhere doing anything, even from home.
Meditation: This works hand in hand with mindfulness. Quieting your mind, which can be a very busy place, and where you can adopt a whole slew of self-loathing and contempt for your illness, can be quieted and pushed away by practicing meditation. It can be small at first. No one goes into meditation for long periods of time without some serious training! My favourite methods of meditation that I have taught my children is the candle technique, where you look at a candle and watch the flicker of the fame and just try to focus on it. I don’t believe in clearing the mind because we are always going to have something in here. It’s human nature to think and we don’t have an on-off switch. I think if you find yourself thinking about the same things over and over again pick one and try to figure out in your head why it’s so important. Music meditation is something I do. Listening to music is a favourite hobby of mine and there’s a running joke here that every song is my favourite song because I say it so often. Listen to your favourite music and try and relax. I wouldn’t listen to Ozzy Osbourne or Marilyn Manson here. Great music but a little too much for this activity. Listen to the music and meditate on your day or your illness if that is what is predominantly on your mind. Try to figure out why these thoughts are bothering you. I also incorporate a mantra. Write down a positive mantra, and you can find them online or make up one on your own that helps you feel positive about yourself and helps you to feel strong. Repeat this mantra when you are meditating. When you say things enough times, you begin to believe them. Believe that you are not at fault for your illness. No one asked to be sick.
Some people recommend exercise. I don’t have it in my list because not everyone can, but- if you can do some activity that helps you relax, where you can tell yourself that mantra you have chosen, go for it. Yoga is something that is beneficial and that you can do low impact and even from bed. Seriously. I have found some yoga exercises and sequences that you can do right from your bed. If you just can’t, find something else. Colouring or doing some kind of artistic craft can be very beneficial for your mind and soul and I believe you can make just about any calming activity into a meditation period by just being at peace, saying that mantra and relaxing yourself in your art as much as you can. If you get diverted by other thoughts try to figure out why those interrupted the moment. Then, get back on track.
My final word: Don’t blame yourself for something that was never your fault to begin with. Illness is never something anyone should be saddled with guilt over. Especially long-term illness. It just is. You can think of it as fate if you want, the cards you were dealt, but it is not your fault. Don’t blame yourself.
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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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Battling chronic illness is a 24/7 job. You never get a break from it. You try to do everything right; you do to your doctors, you take the medicine they give you; you do the therapy they want you to do, you exercise (if you can), eat healthy, get enough sleep, but some days try as you might, chronic illness wins. You wake up and you know it’s going to be a horrible day. You can feel it in every atom of your body and you dread it. Why? You do what you are supposed to. Why does your body, who should be on your side, betray you in such an intimate way? Because it isn’t your body and its chronic illness. Some days are just more difficult for your body to fight it and you have to allow your body the time to heal and get over the bump.
This doesn’t mean that you have to like it. You can be angry and throw things. You can curse and shake your fists at the sky and say, “Why me?” However, in the long run this does nothing to help the situation. Graceful acceptance of your body’s failings will provide more healing than fighting against it. There’s less energy wasted in acceptance, and there is a peace that fills you eventually when you realize and accept that some things are beyond your control. And as much as you’d like to have control over your own body, the chronic illness that inhabits it has more control over what is happening than you do. You have to let it go. You have to look for control elsewhere, in things like how you are taking care of your body, and what you are doing to ease your body when you are having a bad day, rather than being angry that this is happening to you.
Try and be grateful for the gifts that your illness has unknowingly given to you. For example, for me, chronic illness has given me the ability to do what I love, which is write, full time. It has allowed me to be home with my children and be there for them through a considerable portion of their lives to help them when they have needed me. And now, they help me a great deal with doctor’s visits and shuttling me around when I need to go somewhere because I can’t drive. So, while chronic illness has stolen much from my life, I have also reaped some benefits of which I am grateful for and would not have were I not sick.
Not everyone can be home with their kids. It does mean that most of the time we’ve been a one income family, but I have also made up for it in other ways. I meal plan, and make everything from scratch at home. From broth to yogurt when I am feeling up to it and have enough supplies. Sometimes I swear, I can’t keep enough mason jars in the house. I don’t know where they go off to. But I like doing the homesteading on a smaller scale because I don’t have the room to do it on a larger scale yet I’m practicing for when we go to Wisconsin and have our farm. Big dreams!
Closing off here with a reminder that you do what you can, you appreciate your body for what it gives you, you forgive your body for its’ failings and you continue to have a good life. Sometimes chronic illness wins, but it’s only one day out of 365 and even it’s more than that the good days still outweigh the bad in quality. You have to look for the positive in the everything.
I loved this image and the message it conveys. Positivity is not necessarily natural in everyone. It’s not for me. You have to train yourself to see the positive in situations. It’s not easy but as you train yourself it begins to get easier and you begin to think, “Why didn’t I see this before?”
Note from Author:
If you like what you are reading, please click the PayPal button and donate what you can. There is no amount too small and it’s rough trying to fight for disability, having medical bills to pay, kids in college and so on. I am trying to live my dream and my passion by doing what I love, and it’s the only thing I can do because I can’t work outside the home. So, if you can help it would make a world of difference in my life. Thank you from the bottom of my heart.
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.
Five days ago, my youngest started to not feel well. She, like my oldest and myself has an autoimmune disorder. Hers is newly diagnosed and while she hasn’t had too many symptoms from it [lupus] she also has fibromyalgia and scoliosis, which can leave her feeling kind of crummy and achy. Her symptoms were vague and we chalked them up to chronic illness and being run down. However, on the third day when she came home from work and told me that the previous night, she’d been running a temperature, my heart seized with fear and I knew it was more than just a chronic illness flare up in combination with her symptoms. She went to the clinic and tested positive for COVID-19.
She has been quarantined to her room. Her sister, whom she shares tht room with, has been moved to my bedroom during the day and on the couch at night when I try to sleep in my bedroom at night. It’s been complicated because during all this we’ve had other issues going on.
We have an older dog who just recently tore his ACL on his back, rear hind leg and then a few days later partially tore the right leg. We’ve been acting as a trauma unit and a day care center for our dog and trying to manage keeping him and our puppy separated, which has not been an easy task. By the way, if any of my lovely readers know of any ingenious ways to keep an 8-month-old puppy busy while in quarantine, while having to be separated from an injured dog, and keeping said injured dog busy and entertained while he can’t move around, I’m all ears! This has been brutal.
I feel like when my husband goes on deployment that everything that can go wrong does go wrong and that this particular deployment has been the king of all deployments when it comes to things breaking, falling apart, people getting sick and things going wrong. I knew in my head with 3 working children that if someone were to be exposed to COVID at work, it was only a matter of time before one of my kids got sick. And should they get sick, then my chances of getting sick is exponentially higher. I don’t have a lot of places to hide in my house.
It’s been a day since I started writing this and I’ve tested positive. No surprise. My head hurts, my body hurts, and I’m exhausted on top of the normal exhaustion I feel as a chronic illness patient. I can’t even describe it. And the head pain. Like the worst migraine ever that just won’t go away and only sleep relieves it. My asthma has been wonky and I’ve been coughing but so far, aside from a little wheezing, lungs are clear on x-ray. Now, it’s just a matter of time and patience in the healing department and worry that I’m going to have some long-term effects because of my chronic illness. You keeping hearing about these “long-haulers” and I worry that this illness will leave an impression on me. I worry because of my vulnerability. Chronic illness has already scarred my body in so many ways; gouged out deep marks leaving me to never be the same again. It’s a heavy burden and because there’s so little that we know about COVID, I can’t help but worry about my future. What I do know, is when that vaccine comes out, I’m going to be first in line so there’s no chance of getting this again.
To those of you out there still fighting the fight, be vigilant! Wear your mask, wash your hands, protect your love ones. But if you do get sick don’t despair. My daughter felt very guilty when I got sick, as though it was her fault. Once this virus infiltrates your household it’s game-over. Everyone is exposed. Not everyone may succumb to getting sick, but everyone is exposed. This virus is everywhere and you can’t predict who you might come into contact with, where. It’s no one’s fault. It’s just the virus’ fault. Be safe.
I’m hoping you heard that in the Great Arnold’s voice. It’s been just a bit as I’ve been dealing with a lot recently. Hubby being deployed, being home with the adult-ish children without him to help me keep my sanity, renovations on the house that took much longer than expected and weren’t completed and now the handy-man who was doing them seems to have ghosted me, my health challenges kicking it up a notch, a couple of those kids testing the limits of my sanity and good will and just the every day challenges of being a military wife trying to hold down the fort while her husband is half a world away. In a word, it’s been exhausting and has pushed the boundaries of my mental health in ways that hasn’t in many years.
I had to step away from writing because frankly, I wasn’t able to string to sentences together. Between my fatigue, pain and ADHD, I was amazed I could put together a grocery list successfully. I’ve been binge-watching Netflix like a whore. Helstrom is incredible. I hope Netflix and Marvel can find a way to bring it back for season 2 because just wow. I know there was a lot of mixed reviews about it but I’m a huge fan of the story and I think they did an amazing job bringing it to life. I really think it was crappy timing, I guess with COVID and the shut down of Marvel studios and everything but it shouldn’t stop them from letting the series continue. But I digress- just a huge fan. I also re-started You, in anticipation of the 3rd season and let me just say that show is awesome too. Yes, it’s a little far-fetched, but it’s very entertaining and I love the inner dialogue. It’s something I can definitely relate to. Last but not least, Peaky -fucking- Blinders! Damn it if I don’t love that show. Devoured it twice. I won’t lie, I’m a Cillian Murphy girl. I’ve loved him for many years. How can you not be hypnotised by those impossibly blue eyes? -mm..my heart. Bottom line, I’ve been existing in a fantasy land these last few weeks to escape my reality because reality sucks.
My anxiety has been at an all time high. I’m angry at my a few of my adult-ish kids for their inability to even try to get along with one another. They aren’t children any more. At 26, 24, 21 and soon to be 20, I expect somewhat of self-control and respect for one another that is sorely lacking in varying degrees depending on the child. I feel like I taught them better than that, always stressing how important it was to treat each one another with respect and know that in the end they are sisters and when me and their father were gone, they’d be all they had. Sometimes, the simplest questions bring out these defensive responses, accusations and hostilities that I don’t understand where they came from. I feel like I am watching their relationships disintegrate before my eyes and because I never had siblings and I want them to preserve their relationship so badly, my attempts to salvage theirs comes off to strongly and more like a demand rather than advice. I wish they realised how lucky they are to have what they have; these individuals who would have their back no matter what, who would stand up for them anywhere, who love them fiercely. Having a sibling, especially a sister is so damn special. It’s the kind of thing that gets you through the hardest things in your life because you have this built in best friend. Someone who has known you all your life who you can tell your secrets to; someone who knows your secrets and who loves you despite them; someone that wants the best for you when you are dating and so help the person that breaks your heart. I’m not so naïve as to think that sisters don’t fight. I also know that sisters sometimes say terrible things to hurt one another. But it’s how you get through those things, how you forge ahead like in any relationship and lately, all I’ve seen and heard from my girls is such fighting and negativity that I feel like I’m living with a bunch of freaking dementors.
Still, here I am. More or less sane depending on which day you catch me and fighting each day with my chronic pain and chronic illness- fighting to feel better, fighting not to disappear into the darkness of depression because I feel like I’m free-falling into madness. It’s a struggle. Sometimes life is a day at a time; other days it’s an hour at a time and sometimes I lose all sense of time, an entire day lost to meditating some kind of peace back into my bones. I achieve this by completing mundane tasks like organising my folders on my computer like pictures and documents. Or I do dishes by hand instead of the dishwasher, if my body can handle it. There’s something quiet, peaceful and beautiful about the hot water running through my fingers while scrubbing the dishes and inhaling the delicately, scented soap. I know a lot of people would think I just a grew a third head saying that, but damn, I just find it spiritual.
Slowly, I’m finding my way back into writing. Both my blogging and creative writing. I’m working on some poetry and researching for material on a horror story I want to write. Horror is my nemesis. It’s my favourite genre, but I feel woefully unworthy of being able to write it. I am a student of Stephen King, Shirley Jackson, Richard Matheson, Anne Rice, Edgar Allan Poe & Mark Z. Danielewski. I feel like I could never live up to their genius or simply craft a story in the same way they did because I just never have. I’m a blogger. I’ve never created a story from beginning to end in the way they have and it is terrifying to me. But what I do know? No one has become anything without being afraid. You have to have a certain amount of fear in order to light that creative fire. At least it’s what I’ve heard. Mostly, it just makes me nauseated and feel like I’m going to puke. But I’m not the kind of girl who gives up. Whether it’s a three- or five-page story or three-hundred-page story, I’m going to get this done. So, wish me luck.
If you’ve stayed with me through my hiatus, thank you. I appreciate it. Sometimes we just need to recharge for the sake of our mental health and our physical health when we are chronically ill and even if you aren’t. We have to take of ourselves. Neglecting ourselves is never good. Have a great Saturday!
I’ve been gone a long damn time, or at least it feels that way. I bet you thought I left for good? I hope you didn’t. I’d never do that. It’s difficult to tell talking into the void the way I do, but I hope there’s someone out there listening. I always try to answer when I get a comment or question. It’s inspiring and it helps motivate me knowing that I’m not alone, even when it feels that way. After all, that’s what I tell you. You aren’t alone.
There’s been a good reason for me being away. I’ve been extremely busy with life and life has been throwing some huge curveballs my way. My husband has been getting ready for a deployment that we’ve known about but has gotten delayed because of COVID. Now he’s gone and things are a little more settled, but only slightly. We got a new puppy just before he left. It’s something I’d been thinking about for a while, but finally just got the courage to do. After the death of out Pittie, Bowie, my heart was just broken. He was only 6 and he had gone from healthy to on death’s doorstep, literally in a few hours. It took 2yrs for me to be able to mourn him and be able to open our door again to another dog. This one is a Catahoula Leopard/Pittie mix and he stole my heart the moment I saw his little face in the rescue shelter website ad. I stalked it for 2 weeks before I had enough courage to go to my husband, knowing he was readying to deploy, unsure he would want to get a dog now. I’d also just undergone surgery for a spinal stimulator and the recovery was a bit brutal, and I was questioning whether I could handle training a puppy on my own while he away. By the time I decided I could, I thought for sure the puppy I’d seen would have been snatched up already, but there he was and even better, my husband thought it would be a great idea for me to have the puppy while he was away to take my mind off his absence. We adopted the little guy and I named him Nashoba, which supposedly means “wolf” in Choctaw. (Don’t quote me on this- it was something I found while looking for names for him, and because Catahoula’s are bred from the Molossus, Great Dane and dogs Native Americans used, I wanted to name him something that tied him to his roots. Yes, I am that person. LOL)
Nothing has changed with my health while having Nashoba, which has made having a puppy a little challenging. The one piece of advice I could offer any chronically ill puppy owner (and I’ll probably have a post coming out soon) is nap when they nap. If you have ever had a newborn (and even if you haven’t) you know they are notorious for not sleeping at night, but also requiring upwards of 15+ hours sleep per day. Take advantage of this. Rack out when they do. Forget chores, forget life as you know it for a few weeks while they are getting trained, my friends. It is a full-time job, which is why I have neglected my blog. I have barely been able to function for my family, let alone be able to research effectively for my blog and then be able to train a puppy and give him the attention he needs AND give my other puppers the attention he needs. He is a senior, who although loves his new playmate because he misses his previous one, also wants individual attention. So, it is important that if you have another dog, no matter the age, you are giving them the attention they need to and not so bogged down with one that you are utterly exhausted from training or just looking after the pup that you flop into bed at night and fall asleep. The flip side is that you are burning the candle at both ends, and trying to undertake everything, which leaves you in the same position- utterly exhausted. I know this to be true because burning the candle at both ends is my middle name.
I don’t ever go into things thinking this is what I am going to do. But I have found out in these years living with chronic illness and chronic pain, that because you have a measure of your independence taken from you, is when you have the opportunity to take it back you leap into that chance with everything you have. Backtracking here a little bit in my story, that surgery for the spinal stimulator- though it didn’t cure me by any means, it alleviated me a little of some of my pain. Someone who doesn’t live with chronic pain 24/7, 365 days a year, doesn’t understand how a little bit of an alleviation can transform your life. Do I still walk with a cane? Yes. Do I still take pain pills? Yes. Am I still in pain 24/7 365 days a year? Actually, yes. It’s just a little less so I can function a little better and do something’s a little better. The point I am trying to make here is that feeling a little better, sweetened the illusion and made it easier to burn that candle at both ends. But chronic pain is just one aspect of what makes me not feel good, and the chronic illness always makes things challenging. It didn’t matter whether or not I waited to get this puppy now or later, chronic illness was going to be my constant companion and the truth was, my mental health was beginning to head in a downward trajectory and I new having him in my life would be good for me. I love taking care of things, teaching them and watching them grow. It’s a great feeling. And there’s nothing quite as wonderful as the bond that develops with a well-trained dog, or any pet that you keep and rear from young one. I have a cat that I feel just as strongly about. Having animals in my life is extremely important to my well-being. They help me to be happier and feel better on days when I am not feeling well at all.
Swinging back to health-stuff; I swallowed a camera pill to see if we can finally nail down a Crohn’s diagnosis. They’ve been treating me as though I have Crohn’s because I have all the symptoms, but only loosely. To treat me, they need to be able to see where the damage is and so far, it has eluded them. They’re hoping the camera pill will reach in places the colonoscopy could not, given the length of the intestines and where my pain seems to be located. I’m happy it finally worked out as I seem to be active in a flare, so I’m praying that little pill takes some really good pictures after the God-awful prep I had swill down. I swear, it is absolute torture IBD patients have to go through to see what is going on in our gut. They’re going to be looking for any bleeding and damage as I have been anaemic and I may be bleeding from somewhere. Not badly, but enough where it’s causing me to be anaemic. After all this, even on the bad days, I still have hope that I’m going to be managed enough where I can carry on enough to function like a quasi-normal person. That moderately sunny day is enough to get me through to the next day.
I also made the monumental decision to change my rheumatologist. I didn’t feel like after two years under her treatment I was progressing in the right direction. I wasn’t getting worse but I wasn’t feeling great and there wasn’t a lot of feedback about the medication she was giving me or why she was giving it to me and as a blogger, advising my readers to take charge of their health and who they see and not be afraid to change their doctors if they don’t feel they are getting the care they need, I felt I wasn’t following my own advice. So, I investigated doctors in my area and found one who had tremendously positive reviews and was named number one in my city by U.S. News & World Report. I lucked out in that the doctor is a woman because it was a personal stipulation of mine- not that I haven’t run across terrible female doctors, but I always personally feel that they tend to understand women better. My first appointment with her was amazing! To my relief, she said my rheumatologist had not misdiagnosed me, but the medications I am taking are all at very low dosages including my infusions. We are aiming to increase the dosages to maximize therapeutic levels in hopes that this will help me feel a great deal better. Today, 8.6.2020, was my first infusion at the higher levels and it was a little rougher than usual but nothing I can’t handle. I’ll keep y’all posted on progress.
Before I forget, there was also the decision to go back to school! I took one summer class that I got an A in and I have one more class- Algebra that is my nemesis, and then I will have officially graduated. Just one more thing on a very, busy plate of things to do.
Ok, this turned out to be a much longer post than anticipated, but I wanted you to know I didn’t forget about you. I will be here keeping you posted on my life, on my health, deployment, on the puppy and all of it as I get time but it will be more sporadic than usual because of everything. If there is anything, you’d like to see me write about, if you have any ideas, thoughts or suggestions, please drop me a line. I am always grateful for the thoughts and ideas of my readers. Without you, there’d be no blog and my life would be much different. I appreciate and value you very much.
**Images are not my artwork or creation and I don’t claim them to be.
Tell me when I’m going to adjust? I don’t think there’s any way to adjust to chronic illness. I think it’s just one enormous roller coaster ride you have to brace yourself for and hope for the best. When you reach the top of one peak, you stare down and close your eyes and when it shoots down, you scream, hoping nothing will happen. You hope the car won’t skid off the tracks and that you won’t go flying out of your little, boxcar. You hope your blood pressure and your heart can take the whips and bends and the peaks and slopes. And it will never be when you expect.
Tell me when I’m going to adjust? To the days when I feel so badly that I don’t want to move from the couch? Where getting up to fix breakfast feels like a monumental task set forth by the Gods to Hercules himself, and I’m there in his stead looking dazed and confused? When I’m feeling so lethargic in my brain as I sit down to write, that I feel like I need a cattle prod to tease my brain awake and even then, it’s yawning and stretching without any sign of life, leaving me there to stare blankly at a page on the screen wondering if I’ll be productive or not today.
Tell me when I’m going to adjust? To the ever-multiplying issues of what began as one chronic illness, that is now eight chronic issues. How do I adjust to my life when some of these issues are progressive? When walking with a cane now, and sometimes even needing a wheelchair will mean needing a wheelchair more than needing the cane later on in my life? How do you adjust? I read something, somewhere, talking about how older people with chronic illnesses have at least been able to make memories, whereas young people have not been able to do that. But where is the line? Where is the cut off of ample memories? Have I made enough memories 35 when all this started? Or 40 when it started to get bad? Or 45 when I’ve been reduced to the cane and wheelchair when I need? When is the cut off for memory-making?
Tell me when I’m going to adjust? To the ever-present, every increasing, pain that is in my life and that has control over every facet of my life in ways that I never dreamt of. Pain, that was once something that I dealt with on a localised basis, mainly in just my head, which was enough on its own to knock me down for two weeks sometimes, if the migraine was that bad, has now become something I deal with in multiple areas, where the pain doesn’t go away and that I live with 24/7. I never, in any terrifying dream, thought it possible to exist in the manner I find myself existing, and yet, here I am. But I wouldn’t call it adjusting. Adjusting implies that you’ve found some balance in your life with your condition and there is no balance. It’s just life on one big see-saw. You’re either up or you’re down.
Tell me when I’m going to adjust? Friends will understand and so will family. They will adjust to your life as you know it and they will support you. Tell me when that will happen? My family, for the most part, understands, but adjust? I think they have adjusted about as well as I have. And the kids- the kids shouldn’t have to adjust to life with a mom who can’t participate in life the way other moms can. It sucks. My kids have taken on like as caretaker for me. They drive around Miss Daisy. They worry about their mom all the time. It sucks. My friends? I don’t have any outside of my computer. They all left. They couldn’t deal with a sick friend. They couldn’t deal with someone who maybe needs to cancel plans at the last minute, or who can’t eat the same things or can’t jump around and do crazy things. I probably have more in common with folks in a Senior Living Home (and that is not a dig, I’ve actually always got on better with people older than me- the plague of being an only, imaginative, sensitive, intuitive INFJ-T, child). Even now that my children are adults, it’s difficult to do things. We’ve broken down and purchased a wheelchair for when the events are too much walking for me and my cane. But it’s still difficult. They can’t make plans without taking into consideration their ol’ mum. Tell me when they’ll adjust to that? Never, because it just gets worse from here on out.
Tell me when I’m going to adjust? To a progressive illness? It may not happen in five or ten years, but at some point, things are going to go from bad to worse. How am I going to adjust to that? I can barely adjust to my life now and I will be expected to adjust to things then as well. How can it be so easy to just say to someone, adjust? Forget how life used to be before your body betrayed you; ignore how your body failed you and pretend that you don’t live in pain 24/7. It shouldn’t be that difficult right? You are only human, with flesh and bone and nerves and blood.
Tell me when I’m going to adjust? I see more doctors than my 83-year-old father. I’ve had more tests and surgeries than he has too. Tell me when I’m going to adjust to seeing my body in the mirror and looking at the scars left by countless surgeries and stitches that have tried, in vain, to fix me? The hip surgery (total hip replacement) and spine surgeries (lower lumbar fusion and sacroiliac fusion)? Those are just the visible scars. The scars on the inside are more difficult to bear. The scars on the inside are more difficult to contend with. The mental illness can be more debilitating than physical illness. But coupled with the physical illness, it can be unbearable. You don’t adjust; you just live. You live hour by hour, sometimes minute by minute, fighting tooth and nail along the way because you refuse to give in. Because you still have so much to live for.
That’s what this ends up being all about. Not trying to adjust to this life of illness and pain, but about living. Living the best way, you can, through the worst times imaginable. You just live, because you can’t adjust to pain and illness, ever. You can’t adjust to it because it’s always changing. Symptoms are always evolving and sometimes you find out that you have new things wrong. There’s no adjusting to that. You just live. You wake up in the morning and you feel grateful that you can start the day. You feel grateful that despite the pain you can see your kids and plan a future with your husband. You take it hour by hour and minute by minute if that is the only way you can do it. Grateful for the seconds in between. You don’t adjust. You just live.