Loving Someone Chronically Ill

Whether you are a spouse, a caretaker, a boyfriend, a girlfriend, a significant other, mother, father, sister, or brother or friend- if you are in any way, shape or form responsible for, the care of someone who is chronically ill, chronically in pain: You are our Superhero.

It’s not easy living with someone who is chronically ill or chronically in pain, and I’m not even talking about what may be the everyday sickness that is a part of our lives or the everyday pain. I’m talking about the responsibilities you may have beyond that scope of our world that is your own. I’m talking about your job and your bills and your responsibilities that you may have that don’t include us and that may place extra weight on your shoulders because you try to shield us from any extra stress, not wanting to exacerbate any symptoms knowing that there may be little we can do about any given situation. You are our protectors.

It sometimes can’t be helped that our world is very insular. We are caught in a revolving door of doctor’s appointments, many of us fighting with Social Security disability- trying to get it; we can be exhausted by our own symptoms and feel oppressed and claustrophobic by what our lives have become. Many of us, our only connection to the outside world is social media which is our entertainment, our therapy, our friendships and our shopping experience- all one click away but never giving us that human connection that some of us yearn for, or that connection to nature that some of us crave even more. It can be a hollow existence and one where we become very dependent upon our caretaker who becomes our everything, not even realising that we’ve essentially become the human version of Dementors to our caretakers. For any of you who haven’t read or seen Harry Potter, Dementors are wraithlike Dark creatures, widely considered to be one of the foulest to inhabit the world. They feed on human happiness and thus generate feelings of depression and despair in any person in close proximity to them. harrypotterfandom

Deadly Dementors

It may seem like I’m exaggerating a little bit, but the reality is that our caretakers more often than not, neglect themselves, and how they are feeling and things that are going on in their world, in order to take care of things going on in our world. It may not be taking care of us all the time, but taking care of extensions of us, like our children, which may be a shared thing that is an equal responsibility that becomes more theirs for the time being. It may be housework that is taken on their shoulders even though they are working full time and maybe tired. Grocery shopping is something that may fall on them as well as cooking. There are so many small things that you may notice or you may not notice, that your caretaker may be doing for you to help you. Delegating other people to help you in their absence, such as older children, is something you may not register. Sometimes caretakers pull children to the side and make sure they understand that the sick parent is unable to do things they once could and they have to pitch in to help. We might only see it as them helping and never put it together that the parent/or caretaker stepped in to make sure that the children knew what was expected so the sick parent was comfortable and wouldn’t have to do things while the usual caretaker was away. These are beautiful acts of kindness that are often unseen because we are so overwhelmed in our illness and pain. But our caretakers don’t expect anything, because that is the nature of a hero.

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This is my thank you to all the caretakers out there. The husbands, the wives, the moms and dads, sisters and brothers, daughters, sons and friends who look after and take care of someone they love. This is a thank you for the sleepless nights you spend comforting and for the hours you spend at work afterwards This is a thank you for the patience in listening to our rants, our fears, our tears in not knowing what the future might hold for us; this is a thank you for sitting in silence with us and just holding us, protecting us, so that for a little while we can feel safe. This is a thank you for your optimism, for never letting us let go of the dream of a better tomorrow- a tomorrow without pain, without sickness. Thank you. Thank you for being there. Thank you for being you. And for me, thank you for being my husband.

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This is Chronic Illness

(Not possession, female hysteria or stress)

 

It’s been a hard day.

 

As a person with chronic illness and chronic pain, you always come upon people who may not exactly believe you.

You’re too young to have so many illnesses going on, too young to have so many structural problems with your body that required so many surgeries and too young be in so much pain.

But it’s not only that you’re too young, but it’s also this idea that you’ve not done enough to help yourself to get better and therefore, in some underhanded way, your illnesses are your fault. This is if they aren’t all in your head or you aren’t in fact, possessed.

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If I sound a little raw, it’s because I am. I’m raw and hurt and I feel like the person I trust most doesn’t really believe in the validity of my illnesses and quite possibly may feel like it’s all stress-related. Oh, yes. I forgot to list that as one of the possibilities for all my illnesses- stress. While I can concede that stress has a very real impact on the body and can cause both psychological and physical ailments, I will not concede that in my personal case it had a hand in all my physical illness. I don’t have the flu. I don’t have a cold. This isn’t the 1800’s and I don’t have female hysteria! And while stress may have a pivotal role in aggravating my illness, it is not the reason I have these illnesses. I may never fully understand why the genetic roll of the dice gave me the medical equivalent of snake eyes; I’ve asked, I’ve searched and so far, I really don’t have an answer other than sheer, dumb luck.

220px-Snake_eyes_with_Chinese_dice           the-dark-history-of-hysteria-27-4a4

It’s damaging to the psyche, to mine personally and to all those who battle chronic illness and who are disbelieved, who are told it’s all in your head or it’s just stress. You are left questioning every decision you ever made for your health and your body as people you love to criticise you, pass judgment on you and leave you feeling as though you are not even capable of doing that anymore because surely you’d be in better shape. You wonder if your symptoms, symptoms that you yourself quietly ignored so that you could soldier on with your day if you were being overly dramatic? You begin to wonder if symptoms are just all in your head and stress-induced? If your illnesses, these illnesses that debilitate you, that you take medicine for, that cause you to walk with a cane with 24hr 7 day a week pain and have changed your life, these illnesses, could just be one Zen moment away from gone?

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But then, I am jolted back to the reality that is my life and my body and my mind. The place where I live 24/7 unfiltered. The moment I wake up, my consciousness seeping back into my body, pain is the first thing that greets me. During the day, there can be any number of symptoms that plague me, from joint pain, muscle pain from RA, stomach cramping and pain from the Crohn’s too mad itching from the chronic urticaria and various other things that I have going on. It’s a veritable pot luck of what could happen from one day to the next, and sometimes I am surprised with something entirely new. Does this mean I am possessed? Demonic take-over would be preferable at this point because honestly, I almost have more faith in the Catholic church than doctors. And I’m Pagan. My point here being, there is nothing for me to gain by creating new symptoms and as the person suffering from them, no one has any clue what it’s like to live like this other than other people like me. If I could wave a wand and return myself to the healthy person I was before all this I would. We all would.

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Before I go, I wanted to share this. This isn’t a complete listing of all my illnesses, but I thought it was interesting to note how many of them were autoimmune related. And for me it was just driving home the fact I’m not crazy, I’m not possessed, this isn’t female hysteria, this isn’t stress-related, this is an actual medical illness. I do have bipolar disorder, anxiety and PTSD. Those can all be aggravated by stress, and I’m sure my medical illnesses can be aggravated by stress. But I am sick.

 

 

Why Rheumatoid Arthritis (to included psoriatic and inflammatory): “Doctors don’t yet fully understand the cause of RA but know that than the abnormal response of the immune system plays a leading role in the inflammatory and joint damage that occurs. No one knows for sure why the immune system goes awry, but there is evidence that genes, hormones and environmental factors are involved. https://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/causes.php

 

Why Crohn’s Disease: “The exact cause of Crohn’s disease is unknown. However, the medical community believes the condition is an abnormal immune response to gut bacteria. This results in inflammation of the digestive system. Crohn’s disease is now suspected to be hereditary because of its link to the immune system.” https://www.healthline.com/health/crohns-disease/jewish-ancestry#symptoms

 

Why Cholinergic Urticaria: Researchers just aren’t sure why this happens, only that there is mast cell involvement of acetylcholine, the hypothalamus and histamine during a cholinergic reaction. At this point, researchers and doctors aren’t sure why this process causes cell degranulation. https://www.cholinergicurticaria.net/cholinergic-urticaria-causes-what-causes-cholinergic-urticaria-to-develop/

There have been many hypotheses to include autoimmune:

  • Hormone imbalance
  • Vitamin deficiency: Vitamin D
  • Autoimmune: acquired becoming allergic to chemicals in sweat.
  • Some type of allergy or intolerance
  • Genetic susceptibility
  • Other/unknown

 

Why Delayed Pressure Urticaria: This is a cousin of cholinergic, slightly more uncommon. Unlike its cousin, the weal’s from pressure applied to the skin may not appear immediately, but instead 4-6 hours later. They can be induced by things like sitting, standing, walking and wearing tight clothes. Though as anyone suffering from this will tell you, tight clothes aren’t remotely an option. Like everything else so far, the cause is unclear but likely autoimmune. https://www.dermnetnz.org/topics/pressure-urticaria/

 

Ankylosing Spondylitis: As the running theme seems to be, autoimmune seems to be the winner, though genetics here seems to be a strong key role. “Most individuals who have AS also have a gene that produces a “genetic marker,” a protein called HLA-B27.” It is important to note that you don’t have to have this marker to develop AS and many who have this marker don’t go on to develop AS. “There is a hypothesis that AS may start in the intestines when the defences of the intestines breakdown and certain bacteria pass into the bloodstream, triggering an immune response.” https://www.spondylitis.org/Ankylosing-Spondylitis

 

Fibromyalgia: Fibromyalgia is a disorder that is characterized by chronic pain and fatigue. The cause of fibromyalgia is unknown.

Restless Leg Syndrome: “Often, RLS can appear for no real reason. Some researchers have suspected it is caused by an imbalance in the dopamine chemical of your brain responsible for sending a message to control the movement of your muscles.” https://www.vein911.com/people-get-restless-leg-syndrome/

Heredity: In some cases, RLS has been known to run in families and researchers have been able to identify genes for RLS in people.

Chronic Disease: Certain medical conditions and chronic diseases like Parkinson’s disease, peripheral neuropathy, diabetes and kidney failure can trigger RLS symptoms. Relief is experienced typically when these conditions are treated.

Medications: Different types of medicines have been known to worsen the symptoms of RLS including antidepressants, anti-nausea drugs, allergy and cold medications that contain antihistamines and antipsychotic drugs.

Pregnancy: Hormonal changes and pregnancy in women can worsen RLS temporarily. Some women end up getting RLS when pregnant when they never had it before, particularly in their last trimester. After delivery, however, the symptoms tend to go away.

 

 

 

 

More Than Just Peak Week

I suffer from asthma. It’s just one of the many things going on with me, and often the most overlooked, set aside and least worried about because it’s generally under control here. The only time I notice it is when I get sick or when my allergies are actively bothering me. However, during a recent visit to the allergist for something else entirely, I was given a breathing test to measure what my average was and found out that I was having issues that I wouldn’t have been aware of. The doctor prescribed an inhaler to take for two weeks that would help open my airways. This reminded me that sometimes, for an asthmatic, trouble is not always obvious.

In recent years there has been more awareness shed on the danger of unchecked asthma, especially during the month of September. So much so, that two weeks in September, considered the deadliest for asthmatics, has garnered the name Peak Week- because of the many asthma attacks and many sudden deaths caused by asthma attacks. This has, in turn, shined a light on asthma as a stealthy killer for people and children who think they have their asthma under control. But has it brought enough attention throughout the rest of the year? While it’s great to have a light shined down on a silent killer during the month of September and those deadly two weeks, could we be doing more?

According to the CDC, the total number of asthmatics in 2017 was somewhere around 25, 191. This divided into 6, 182 for children under the age of 18 and 19, 009 for adults over the age of 18. Out of these numbers, 11.7 per cent are below the poverty level which, as you can imagine, this would directly influence their ability to access care for their asthma and the regular medication needed to treat it, or their children. It’s frightening, as someone living with asthma, to live without proper care or needing to ration your puffs because you don’t know when you might be able to afford the next inhaler. Worse yet, is debating whether or not the wheezing you are feeling constitutes a trip to the ER, or if it will just pass. But I’ve been there, and my only saving grace is that I didn’t know then what I know now and how close I may have come to dying because I was neglecting myself. The sad thing is, some adults and children are dying not only because they may not have access to healthcare, but because they are ignoring the warning signs that their asthma is giving them to take care of themselves. Because the thing about asthma is that you won’t get a second chance if you’ve procrastinated. CDC

The following are some lesser common symptoms people may have just prior to an asthma attack, that if addressed, may lessen the severity of an asthma attack.

inhaler

  • Yawning or lots of sighing: Asthmatics and people with respiratory illnesses will do this, often without realising it. It’s a way to get more oxygen into the body and on the flip side carbon dioxide out.
  • Chronic dry cough: Sometimes this is a symptom, and for some, this is their only asthma symptom.
  • Fast breathing and hyperventilation: Asthmatics tend to have faster than normal breathing when having a flare-up even in the early stages before the symptoms are obvious. It’s your body’s way of getting more oxygen in and ventilating better.
  • Fatigue: Feeling tired more than usual shouldn’t sound strange when you think about it. Your body is working hard to keep the body oxygenated when the lungs are inflamed. So, while you aren’t yet feeling the effects of the asthma attack, you are feeling what the effect is having on your body.
  • Difficulty Sleeping: Your body is going through stress. It’s preparing to have an asthma attack. This can result in disruptive sleep, which can result in fatigue.
  • Anxiety and difficulty concentrating: Feeling anxious can come from the lack of oxygen and can also affect concentration. Not being able to breath makes us feel anxious as well.
  • Itchy chin: Some people experience an itchy chin and throat before an asthma flare-up. This is generally associated with allergic asthma but not always.

 

Four Unusual Asthma Triggers

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  • Aspirin: About 20 per cent of adults with asthma are sensitive to and have symptoms when they take aspirin, according to the American College of  Allergy, Asthma, and Immunology (ACAAI). Every Day Health
  • Food Additives: Food preservatives, food colourings, and flavouring agents have been found to cause asthma attacks in some people, so make sure to read food labels. Sodium bisulfite, potassium bisulfite, sodium metabisulfite, potassium metabisulfite, and sodium sulfite are all potential triggers. Every Day Health
  • Air Fresheners/Scented Candles: We all want our house or car to smell nice, but for asthmatics, it may be doing more harm than good. The ACAAI notes. “We know that the fragrances from air fresheners trigger allergy symptoms or aggravate existing allergies in a lot of people,” Dr. Tuck says. Perfume and flower scents are particularly likely to irritate sensitive airways, according to the results of research by a Swedish team published in the January 2016 issue of the International Journal of Environmental Health Research 
  • Remodeling or Paining: Remodeling or painting in the home can stir up dust mites, pollen, and other contaminants in the home, worsening symptoms. Additionally, the chemicals in products individual’s use for the remodel such as glues, paints, sealants, and varnishes could have volatile organic compounds in the chemical makeup, which can irritate breathing. There are, thankfully, versions of these products available today that provide low volatile organic compounds. Individuals should look for products certified as asthma & allergy friendly if they want to minimize potential reactions. Health Prep

Holiday Gear Up: When You Don’t Feel in the Spirit

Halloween is a wrap-up and I’m a little depressed. A lot depressed if I am honest about it. Halloween is my favourite holiday even though I don’t dress up for it. The whole month of October is a holiday for me when I really think about it. It’s scary movies every day that starts off with A Nightmare Before Christmas; it’s Pumpkin Spice Latte’s because just inhaling it reminds me of the childhood memories I have of fall. I love decorating my house with Halloween decorations and lights and I could keep them up all year if I had my way. I’m Wiccan, which adds an element of the “witch” to a season where witches take flight on a broomstick against a dark, moonlit night. Of course, if I had a broomstick it would make getting around a lot easier- or at least I hope it would because I sure don’t know where I’d hang the handicap placard from. Then, the spooky fun comes screeching to a halt and in comes November with Thanksgiving, soon followed by Christmas, replacing my joy with anxiety, and general lack of holiday spirit.

Grinch

You might be asking why is there such a difference between Halloween versus Thanksgiving and Christmas? I can tell you there is a lot. It starts with the pressure of Christmas that starts early in November, and now, even starts late in October. You’re blitzed with advertisements everywhere, enticing you to buy, buy, buy for all those people you love until you are in so much debt that you can’t even see. We’re not rich and while I’d like to be very generous, I can’t be and I end up feeling very guilty about it. I tried to make up for it with creativity, sending gifts [care boxes] to the family with a theme. But I still felt like not thinking about them individually was somehow letting them down and being a bad relative. I dislike how corporations take advantage of a holiday and the sentimentality, and generosity that is intertwined with it.

black friday sign

Where you have a holiday event, you have to have great food. Thanksgiving and Christmas are probably the biggest food, focused holidays. It’s traditionally when most families get together to visit each other, which explains why there’s so much food involved. In times when the norm was very large families of four or more children, common to see twelve children in a family, and then possibly expecting uncles and aunts of the same number, grandparents and cousins etc., you needed a feast with everyone bringing something to make sure there was enough food. I get it. And I love food. But right now, food and I are not talking. We’ve had a falling out. You see, food is trying to kill me and I haven’t been able to look at it the same way again. It’s an all-out War of the Roses. I’m not sure who will come out alive at the end of it, but right now it’s up in the air. These holidays are important to some of my family and missing them would be difficult, and because I don’t know “safe foods” yet, I’m not sure how to protect myself, other than avoidance. This leads to dread. I’m dreading it. I’m even more worried if I have a flare. If I just can’t go. What then?

foodtrauma

This leads me to anxiety. I already have social anxiety. But this complex relationship with food has led to what I can only describe as “Food Anxiety,” which has led to a paranoia before I eat and after I eat, never knowing if what I have chosen to put in my mouth might cause the next gastro-nuclear-war. It’s an extremely difficult position for me to be in because while I have always enjoyed all aspects of food, there’s also a darker side to the relationship. I struggled with an eating disorder as a teen to my early 20’s and managed to build a healthy relationship. I fought demons and I struggled, and there were some times that I failed. But in the end, I ended up healthy. So, the irony for me here is to be back in a situation where food is my enemy; where I never know what might happen to me physically, after eating something that’s never given me trouble before. Even now, being as careful as I am to try and stave off symptoms, there are still times when it happens. No matter how careful I am, no matter how much I watch what I eat and try to stay away from things that may trigger symptoms, I’ll flare. It feels like a no-win situation and one that leaves me anxious around food. There’s a running joke in my house about me eventually wanting to live on air and sunshine, and it’s true. I wish I could. I wish I didn’t have to eat normal food and I wish that I could avoid putting my body through the trauma of eating and never knowing what might set it off.

breatharian

Few understand my general lack of holiday spirit. They want me to ignore the state of my digestive system and enjoy holiday meals and company. I’d prefer to put on cosy joggers, cover-up in a blanket and watch something on Netflix while waiting for my bland chicken to roast, with rice and apple sauce. It’s a sad state of affairs, I know, but if I can avoid the “distress” I will make the effort to. Sometimes it’s unavoidable. But it doesn’t mean I will eat anything. Its only human when you experience pain and distress that you try to avoid it. But I also don’t want to put the family through the extra trouble. It’s not their “special diet,” it’s mine. And even the loose diet, is not something cast in stone. Sometimes it fails, and sometimes I have episodes even after being militant about what I put in my mouth. It’s exhausting. I wish people understood. I wish I could be given a Get-Out-Of-Holidays-Card, until I had some kind of handle on what is going on, what I can eat and what I can’t so that I wasn’t a wreck before and after, not knowing what was going to happen.

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When Love Hurts

October is Domestic Abuse Month. I wanted to share something before the end of the month because the subject matter is personal and important to me, and extends to the topics of my blog. I am a survivor of domestic abuse and I want you to know that not only can you survive, but you can thrive and be happy in ways you never thought you would while you were in the relationship.

My relationship began when I was 18. I became pregnant and got married by 19. As most beginnings tend to be, things were good. But as the relationship evolved our “honeymoon” ended and our true temperaments were unveiled. I was still a child and he was avoiding being an adult at four years, my senior. He couldn’t keep a job and I was working 60 hours a week while pregnant. I was also trying to go to school. Our fights about money were epic. The abuse didn’t start until our second year.

I honestly didn’t know I was being abused. Much of the abuse was verbal and emotional. He humiliated me. He threatened me. I dealt with mental illness and he used it against me, telling me I was a bad mother. Threatened to take the baby away from me if I tried to leave. When I got pregnant the second time, my mental health unravelled pretty badly. She was born prematurely at 28 weeks and I tried to kill myself after one of our fights where he threatened to take them both away. There was physical abuse too, but in all honesty, the worst of the harm he did, even to this day, was the harm he did to my psyche. That is the point I am wanting to make here.

I didn’t believe I was in an abusive relationship. It took me four years to leave him because I didn’t see he was hurting me. He wasn’t beating me every day. Did I get left with bruises? Sometimes. Mostly if he drank. Was I threatened? Yes. Did I look down the barrel of a shotgun and think that was going to be it? Yes. Did I not think that was abuse? No. Because for the most part life was quiet. Life was walking on eggshells, making sure I didn’t do anything wrong to piss him off because he mostly hurt me with words. I was degraded. I was humiliated. I was made to feel worthless. I believed it. How could I not see it beforehand? How could I get myself into this situation? How could I be such a terrible mother?

It’s important that women/men know that abuse can take many forms. It’s not always bruises and a person can hurt you in a number of ways that leave you scarred for a long time. But once you face that you are being abused, you can get help. You can turn to someone that you trust and get out of that situation. If there’s no one that you trust, there are numbers to call that I will leave at the bottom of this blog. You have a chance at a better life. A chance for a more positive future.

Abuse leaves its scars. There’s a number of evidence that links domestic violence with many chronic illnesses, not limited to but including arthritis and hormonal disorders, asthma, diabetes, hypertension, chronic pain, severe headaches and irritable bowel syndrome and mental illness. We really don’t know the scope or depth of how domestic violence affects the human body or brain. Hidden Cause of Chronic IllnessWe don’t know how the trauma can change the human body or brain, and how this event may predispose someone to any one of these chronic illnesses. But we do know how resilient the human body and brain can be and how adaptable they are. You can overcome this trauma, and even if this trauma triggers chronic pain in some form like me, you can live a fulfilling life beyond what happened to you.

National Domestic Abuse Hotline: Call 1-800-799-7233.

The Hotline

Procrastination in Chronic Illness

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

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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!

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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

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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

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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 All Started with An Itch

Almost two years ago, and quite benignly, I began to develop these mysterious rashes. I was the sensitive-skinned child with eczema and so I didn’t think much of it, chalking it up to a return of childhood skin issues and the doctor issued me some skin cream with cortisone and made sure to keep my skin hydrated with lotion while applying the cortisone mixed in, vigilantly.

dust_mites

Two years later, this is no longer a little problem but one that is driving me crazy and one that I’m losing sleep over, scratching myself like mad and trying to figure out what the culprit is. I’m an investigator by nature, so I am perusing the internet, revisiting old offenders: dust mites! If you didn’t have a skin or allergy problem beforehand, let me tell you, just looking at the pictures of these nasty little critters are enough to make you think you think you have one. I bought dust mite protective covers for both the mattress and the pillows, not just for me but for my husband who has also been having a weird skin issue. Checkmark that off, and I’m still itching like crazy. I go and visit the allergist, and get tested. Not too much there. Two types of dust mites, cockroaches and ragweed. She is unsure of what is causing the itch.

 

My rheumatologist was closest. She believed I was having some kind of heat sensitivity issue. I began investigating and did find out their urticaria had many types. So, I called up a dermatologist and sat down with her and within five minutes she lifts the veil on what may be going on, on what now has become chronic urticaria. Have I mentioned lately how much I’ve begun to loathe the word chronic in conjunction with myself? I feel like every facet of my being is chronic. My pain, my illness- I’m just Chronic Liza. But enough of the whining, the issue has been is this: Pressure urticaria and Cholinergic urticaria. In layman’s terms, you’re bloody itchy. But to give you a clinical understanding, I’ll explain it better.

 

Pressure urticaria: chronic inducible urticaria characterised by the appearance of weal’s and/angioedema after a pressure stimulus or more commonly, delayed pressure urticaria, after a delay of 4-6 hours.

Cholinergic urticaria (CU): is a type of hive brought up by raised body temperature. It develops when you exercise or sweat. It usually disappears on its own in a few hours. In severe cases, CU can sometimes be related to exercise-induced anaphylaxis.

 

My case seems to be moderate (this translates to somewhere between the worst case of poison ivy and washing with lye soap), but we’re also trying to figure out some triggers. I know heat aggravates’ s me. My clothes have been a nightmare and that is saying something coming from a woman with fibromyalgia and rheumatoid arthritis, who wears jogging pants and T-shirts. But my underwear and bras and socks hurt. They leave me itching and scratching and wishing there was a cactus nearby. It’s amazing to me that it’s not even always an immediate cause and effect type of thing. Meaning when I get dressed and put on my bra, I don’t suddenly sprout hives. But three or four hours later? I can’t get out of that thing fast enough and under the band, around my ribcage, even though the bra isn’t tight, it feels like I have a line of hives and they’re doing the itchy Cucaracha.

lacucaracha

Other triggers in my case: possibly sun but I am thinking it’s mostly heat-related and not specifically sun (solar urticaria). I’m not even sure if that is how it works so if any of you wonderful readers have it, understand it, please shoot me a message. The other possible trigger I am concerned about is my pain medication. It’s an opiate and I am in considerable pain from my various health issues and so my dermatologist and I are waiting to cross that bridge when we get to it. She’s very understanding that I need the medication, and right now we are trying to do everything we can to reduce the itching before we have to cross that bridge. There is also stress urticaria. I don’t think stress is a trigger but I will monitor that too. And like solar urticaria, you have cold urticaria. However, I don’t think I live in a region I can test that and I usually feel better when I’m cold so I feel positive that won’t be an issue even when we move to a colder climate, but I won’t speak in absolutes because I know that can change.

The itchies have been horrid for me. If you have them too and want to share with me your itchy madness, please feel free to connect on Twitter [@fibrohippiechic] or Instagram [@lovekarmafood]. I always find it easier to go through things with people than alone, and this is one of those things that people have to kind of have to take a moment to let it sink in because it’s a little unreal. “You’re allergic to you’re sweat?” Uh..kind of? “You’re allergic to pressure on your skin?” Well, yeah..sort of. This is when you invariably, have people wanting to play tic-tac-toe on your arm. Despite the hives. People are weird. So, feel free to make contact. We can lament about the itchies together or find fun, festive ways to celebrate fall.