Diagnostic Years

Diagnostic years are absolutely exhausting! 

A diagnostic year is when new symptoms pop up, or a change is made, which begins a cascading effect. Other, stable, illnesses flare-up, long-suppressed symptoms make an appearance, and my schedule is filled with appointments trying to figure everything out. It is necessary, it is incredible to be able to get the appointments I need, and it is entirely draining. 

In September 2022, a medication change was made. Within weeks, my body swelling was entirely unmanageable, my intestines began bleeding severely, so my diet had to change drastically (potatoes, eggs, and fluids only). We also found that my thyroid was way out of normal, and had to change doses of medication for that. 

I also gained 30lbs within 3 months - some due to swelling, some potentially due to my thyroid, but there's still no answer for the remaining weight gain. (Stress? Age?)

In February 2023, I developed tinnitus and sudden hearing loss in my left ear. I also developed some moderately severe dizziness/vertigo, some nausea, and increased migraines. I was put on steroids for potential Labyrinthitis, but the tinnitus and hearing loss remained. 

In the summer of 2023, my eyes worsened. I had developed Geographic Atrophy (worsening Macular Degeneration), then suddenly developed double vision, added dizziness, and eye strain as a product of the double vision. It was also discovered that have the very beginnings of Cataracts.  

So all of last year we were: 

• trying to get my thyroid back to within normal limits

• trying to find the source of the intestinal bleeding

• trying to find out why I developed tinnitus and hearing loss

• trying to figure out why I developed double vision and how to try and correct it

• trying to figure out why my weight hasn't normalized

On top of all of that, I went through an episode of Depression after losing my soul-dog Decker, among other additional emotional stressors. 

We were also trying to figure out our little mini-aussie Comet - who has been having medical issues. Lots of physio appointments for him, diagnostic tests, and physiotherapy exercises at home. He has an appointment with a neurologist next month. 

Safe to say - 2023 was an excessively draining year. 

Now here's what we've figured out so far: 

• My thyroid is finally back to within normal limits (January 2024 bloodwork was the first normal thyroid result since early 2022). 

• Still no explanation for the intestinal bleeding, but it had improved by December 2023, after a year of potatoes and 5 months after re-adding the medication that had been removed in 2022. 

• The Macular Degeneration has created a scotoma (blind spot) right at my fovea (central focus point) in my left eye. So I developed what's called Dragged Fovea Diplopia Syndrome. Essentially, my left eye is displacing the central image, causing double vision. My eyes are trying desperately to connect the two images, causing strabismus. The double vision cannot be corrected, but there is a potential that it will subside when I lose all of my central vision in my left eye. 

• I have developed a nystagmus, likely from inner ear damage, causing uncontrolled eye movements and additional vertigo/dizziness. The likely suspect is the Labyrinthitis in 2023. I will be starting vestibular physiotherapy to try and correct it, although because it's been over a year, the doctor isn't overly optimistic. 

• It looks like I might have the beginnings of something called Otosclerosis in my left ear (based on a CT scan report). I am still waiting to see an ENT to find out for sure, to discover if I am a candidate for surgery, or if I will simply use a conductive hearing aid for the time being. I will need additional scans in a few months and will need to keep monitoring my tinnitus and hearing loss. 

I still have a lot of appointments coming up, but it seems like the investigations are almost at an end. 

So now my body feels like I ran a marathon every day for the last year. My body is depleted and drained and I am perpetually exhausted. 

Diagnostic years are like being stuck in suspended animation. So now that we have figured out everything that we can, my body can finally relax. So as much as I want to do things like work out, go for more walks, enjoy the nicer weather, do more things at home, my body is telling me to sleep. 

I feel like I could be in and out of sleep for a week or more. 

One-Size-Fits-All

One of the biggest myths of healthcare is a one-size-fits-all approach. We are led to believe that: 

Bacterial Infection -> Antibiotics

Inflammation -> Anti-inflammatories

Autoimmune -> Immunosuppressants

Cancer -> Chemo/Radiation

Cut -> Bandaid

Pain of any kind -> Pain Meds

Overweight -> Fad Diets

Virus -> Antivirals

Depression -> Antidepressants

Psychosis -> Antipsychotics 

It seems like no matter how many different patients we see - all responding differently to a list of treatments - we still hear and see the same judgements: 

"If this treatment doesn't work for you, you're doing something wrong". 

It's one of my personal biggest pet peeves. 

We all know, logically, that every person is different. We may say the words, that every single body responds differently to every pain, disease, trauma, etc... but do we really believe it? 

When I see all of these people on TikTok and IG touting some treatment or miracle cure, it's always the same messaging: "you're doing it wrong". 

In a society that considers treatments to be a one-size-fits-all solution, we lose sight of the complexity of the human body. 

Every single thing that we put into our bodies - be it medicine, scents, food, lotions, thoughts, knowledge, etc... - will react differently than any other person on the planet. 

That's why side effect lists are so long. That's why so many people are on so many different medications. It's why different people respond differently to a night out drinking. It's why some people become addicts and others, who engage in the same behaviours, do not. It's why some people swear by naturopathic remedies and others swear by modern medicine. It's why people with the same disease all look different, experience different symptoms, are all on different doses of medications, are sometimes on entirely different therapies or dietary restrictions. No one responds in the exact same way as any other person. 

We need to stop seeing treatments as one-size-fits-all. We all respond differently - and every single one of us is just doing our best. We're all simply trying our best to feel better - and we are all learning about how our own bodies respond. 

How do we cope in such a society? How do we help each other? 

Support. 

Support without judgement oozing from our mouths. Support without a thousand suggestions. Support without questioning someone else's approach. 

So much easier said than done - but it's a start. 

Living With Severe Body Fluctuations

I JUST wrote about body shaming and how it affects and is affected by chronic illness. 

One of the main themes about having some of the illnesses that I have and some of the medications that I take is that my body changes - severely - depending on various factors. If my medication is wrong (especially for my Hashimoto's), I can either lose or gain a ton of weight in a short amount of time. Then add in the body swelling disorder and things change even more. That doesn't even cover the multitude of dietary changes I have to go through regularly due to my Inflammatory Bowel Disease. 

Below are a few pictures of when my medication has been really wrong. 

Below that are pictures of when my medication was *mostly* right and my illnesses that affect my body size were relatively well-controlled. 

In the most horribly under-weight photo, at the time I was eating anything and everything I could to gain weight. I was on a 3000-4000 calorie/day diet - with tons of good fats and proteins. But it didn't matter. Why? Because my medication was wrong. My Hashimoto's was out of control and we didn't know. I had zero control over my weight. 

In the most over-weight photo (which was taken today), I was off of my swelling medication for several months, which has caused a ton of swelling, and my Hashimoto's has started to go off the other way. I am back on my meds for the swelling, but it could take months to gain back some control over my body weight. As of today I have been on a mostly fluid diet for the past 7 weeks due to Crohn's Disease, eating as much as I can to get all the nutrients I need, but lacking in caloric intake (inevitably). It doesn't matter. The swelling and the weight gain are entirely out of my control. I have to wait - likely months - before my body feels like mine again. 

It's totally normal for bodies to fluctuate. When my medications are right and I have control over my body weight and size, I fluctuate within about 10-15 lbs over a year. That's with keeping a steady diet, a steady level of activity, etc... 

When my medications are wrong, though, and I no longer have control over how my body looks and behaves, I can fluctuate 30-50lbs within a year. That's also with keeping a steady diet and steady level of activity, etc... 

Body size and weight fluctuations aren't exactly the most important of the symptoms that I have to deal with, but it can be extremely bothersome. SO much money is spent each year for new clothing. Thank goodness thrifting is now trendy! It means that my closet is constantly overfilled because I have to keep basic items in multiple sizes. There are the stretch marks that show up, the stretched out skin, the changes in skin quality, pain and tenderness in swelled tissues, clothing that might fit one day and then are ripping at the seams the very next day. Then there's the mental toll that these changes take. Even though I KNOW I have no control, it's hard to resist the urge to either binge-eat (if I am underweight) or to crash diet (if I am overweight). 

I see my doctors regularly, I am closely monitored, and I get bloodwork on a regular basis. Still, these diseases wreak havoc on the body - inside and out. 

Bravery Isn't A Feeling

There's something really confounding about the word "brave". 

When you're ill, especially with something chronic or something widely accepted as particularly difficult or serious, you hear the words "brave" and "inspirational" quite a bit. It's definitely a flattering sentiment, so I'm not complaining, it's just that I have never felt brave. Or all that inspirational, really. I have felt fear and helplessness, a whole lot of frustration, and I often feel a sense of determination - which is likely the closest to bravery I can conjure - but never brave. 

I think bravery can only be attributed to someone by another person, or to oneself after an ordeal, and I think that's why it's such an uncomfortable compliment. It's not actually a feeling. 

If someone tells me that I've been brave for doing something, I'll take a minute to look back on that situation, and what I always remember feeling is terrified. Not only that, but quite often, there were no options.... 

For instance: 

I never once felt "brave" having my large intestine removed. I had no choice. It was a situation that was entirely out of my control, and I remember feeling all sorts of emotions, but bravery definitely was not one of them. 

Doing these ablation procedures - I don't feel brave. I feel scared, anxious, and like a wuss for being so terrified when I know how much it helps. 

Even talking about all of this illness, sharing personal stories and going into nitty gritty details, to me, it isn't brave. I feel selfish about it, I feel liberated sometimes, and I feel determined to get my experiences out there for other people who are developing chronic illness and are looking for information and other people who are going through it. 

Having illness, and living life with illness, isn't brave, in my opinion, because I have no option. It's not like I have the ability to give away that illness for an easier life but decide to stay ill. Waking up each day and dealing with the laundry list of uncomfortable symptoms doesn't feel brave, it just feels like life. 

When I receive comments or notes about seeming brave, I often get that uncomfortable shy feeling you get when you're complimented but don't quite relate to it. It's like I can't connect my life experiences to that word. Every time I go through something big, or get through a really difficult day, the feeling of 'bravery' is elusive... 

When someone calls me brave, for just living my life, sometimes it feels like it cheapens it; it does it a disservice. Like living with a lot of illness  is brave because the easier thing to do is not continue to live...? Almost as though if you're ill, some people think life is not worth living? I emphatically disagree with that instinctual sentiment. 

I truly love my life - even though illness and awful symptoms play a large part. I have a lot of illness. I am happy with my life. Just like everyone else, I struggle and I can feel disheartened, but I am happy. 

I love the idea of seeming brave, but I don't know that I have ever felt it. 

Have you ever actually felt brave? 

Thyroid Issues

Over the last couple of months, I have suspected that my thyroid levels were out. I have been having mood swings and uncharacteristic irritability, with weight gain, issues with sweating, tiredness, and then my eyebrows started disappearing. 

That last symptom is usually a very clear sign that it is my thyroid. Disappearing eyebrows and not feeling in control of my weight - those are the two key symptoms for me. 

Except there is one issue: with weight gain, I believed my thyroid was underactive. 

Well, I just got my bloodwork back - apparently my levels are high, not low. 

I also have low Vitamin D again. This wasn't as surprising. It took a year and a half on 50,000 IU per week to get it back to normal.... even though I take Vitamin D drops every day, my body does not seem to hold onto it. 

So tomorrow I start on my lower dose of Synthroid. I am a bit nervous because of the recent weight gain... because it strikes me as odd... but I have to get it to normalized levels. 

Overall, my Hashimoto's has only been on the extreme sides of high or low a handful of times. It can be really frustrating. Once it has gone too high or too low, getting it back to normalized levels usually takes several months. Back and forth, back and forth. 

The symptoms I find most frustrating are symptoms that make me feel as though I am not in control: weight gain or loss, and mood swings and irritability. It's really odd to suddenly feel rage and want to lash out for no reason. Luckily, I have dealt with these kinds of mood swings with other medications over the years, so I can now logically decipher if I am rationally angry or irrationally angry, and then avoid any arguments. At least most of the time. 

So fingers crossed that this new dose will help most of the symptoms. And if the uncontrollable weight gain persists, maybe it's a symptom related to something else. 

Time will tell, I guess. 

Smart Device and Chronic Illness

Picture this: 

You are given a device. 

This device has to last you a lifetime. There are no exchanges, no returns, and none available to purchase. What you are given is all you have - for life. 

Sometimes you download too many things or click on too many links that result in viruses and the like, so you may need to get it looked at or repaired. 

Sometimes, though, devices are given out that have inherent flaws; duds, if you will, that tend to malfunction. Calls will drop out, you'll have connectivity and functionality issues, all hard-wired into the system. You can try to download apps to help it run a bit better, or you can even replace or remove faulty parts, but it will never work at normal peak performance. 

Sometimes these malfunctions won't even show up until you've had the device for several years. 

You start to notice that the battery won't recharge any higher than 70%. You take it in and you're told that there is nothing that can be done, and it will gradually function less and less over time. Small improvements can be made to specific function problems, but overall the device will continue to experience issues until it no longer works at all. 

After you've had this device for a long time, you have become accustomed to its inconsistencies. Some days it will peak at 40%, some days it barely works at all, sitting at 20% or lower. It is difficult to use the device as needed. You might have special chargers or charge banks, you may have to change a few settings and use the device sparingly to get the most out of what is left. You never know if it is going to work or not, or if it is going to simply shut down all by itself. Some days it is utterly useless, but it's the only device you have, so you try everything to increase its functionality. You do everything in your power to capitalize on each well-functioning day, and to be careful not to trigger any of its common issues. 

You're careful and you take care of your device, but ultimately some devices just do not work properly, and that is what you were given. 

This is what chronic illness is like. Inconsistent, malfunctioning parts, every attempt possible made to improve any small process, and ultimately functioning at a much lower percentage than what is considered to be normal. 

No returns or exchanges. 

No available purchases to replace an entire unit. 

Small adjustments and the odd improvement in a function here or a function there, but never reliable. Rarely predictable. 

Perpetually Temporary State

Everything is temporary, we all know that, but when it comes to chronic illness, temporary is etched in our heads every single day - for the good and the bad. 

Planning ahead and thinking ahead while having active disease feels a lot like dreaming. I mean, I can plan all I want for the next several months, but every single morning I have to figure out what my body is doing and what my limits are all over again. 

Take my sleeping schedule for example: 

I have slept well for 7 days in a row. To some that sounds like heaven, to others that sounds like a very little snippet of time. Before these last seven days, I would have a decent sleep maybe once a week over the course of nearly 6 months. Before that, I would sleep too much a couple days a week and have insomnia the rest of the time over the course of another four months. The six months prior to that was nearly all sleep without ever feeling rested. 

Seven days of good sleep, for me, is something to be celebrated, because at any moment it could change. 

Every symptom, every medication, every bodily state is precariously temporary. 

Some symptoms, like abdominal pain and nausea, can go years without reprieve, while others can show up sporadically. This entire family of illnesses: inflammation and auto-immunity are terribly volatile and unpredictable. I have had 'stable' moments in time, or stable enough to make plans a month ahead without worrying every single day if I'll *actually* be able to follow through with it. Most of the time, though, I am a constant question mark. 

Even the years I was 'stable' enough to risk traveling had me worried I would have to cancel right up until the moment when the flight took off. 

It's this gnawingly and perpetually temporary state that helps me cherish every good moment. I want to take life in wherever and whenever I can! 

My good moments are temporary, yes, but so are my bad moments. With the nature of these illnesses, the bad stretches tend to outlast the good ones, but that is simply the reality. When one disease or another takes a turn, I know it could be months (at least) before it settles back down. So I brace myself for a few tough months and we all get through it the same as we have always gotten through them: pivoting and focusing on different goals or priorities, changing plans, modifying everything. 

But then when those good moments happen, they are so much sweeter and I am always so prepared to take advantage of every second. 

Trying to 'get used to' these quick state changes is never easy. 'Going with the flow' tends to be a lot more difficult when you're facing white rapids and whiplash, but it's better than always trying to push back - and it is nearly always to my own detriment. 

So take the good, take the bad, take the time to enjoy something in the midst of everything, knowing that everything is temporary. 

Busy Immune System

I have a fair few number of diagnoses. 

Most of them have something to do with inflammation and many of them are autoimmune in nature. This means that my immune system is attacking my own organs and vital operating systems. 

When I was young and was only diagnosed with Ulcerative Colitis, that inflammatory response hit me hard. My entire immune system was dedicated to ridding me of a previously perfectly healthy organ. Of course, my own immune system did enough damage to do just that. 

After my first two abdominal surgeries, though, I began to have inflammation in other areas of the body - where can we attack next? Turns out I have warmongers for an immune system. 

Nevertheless, they seemed to make their rounds, affecting several different areas of the body and progressing each disease further at different paces. 

My medical chart has always been a bit of a conundrum to health professionals. The diseases I have been diagnosed with are often fast-moving illnesses with frightening progression. 

Yet, each illness I have been diagnosed with seems to be progressing at a slower pace than normally seen. 

So here is what I am wondering: 

When my entire immune system was dedicated to one particular organ (the large intestine), the severity of my illness progressed quickly and without mercy. Now, however, it seems as though my immune system is spread so much throughout my body that the regular timeline of a disease progression does not apply. So instead of my Ankylosing Spondylitis moving quickly, for example, maybe the fact that my body is attacking several other organs is actually a blessing. My immune system is so busy trying to juggle all of these unwanted organs and systems, that it cannot put its full force into any one area. Of course, that is also the entire point of being on immunosuppressants.... but the surprising slow pace at which some of my illnesses are moving has me wondering if I am actually lucky to have so much malfunctioning (in a way). 

Those pesky cells seem to change tactics every now and then. For a few months my Crohn's will be terribly flared and then calm down a little, only to be faced with a psoriasis flare that will seemingly come out of nowhere, then once that settles my Hashimoto's will go berserk and require medication adjustments, and once that's dealt with my AS will flare terribly and force me to use my wheelchair constantly for a while, and so on and so forth. 

Yet, as long as my immune system is attempting to attack everything all at once, my body seems to find almost a balance -> everything feeling awful but not entirely unbearable; everything inflamed but not as quicky damaging. 

Having multiple malfunctioning systems and multiple areas of pain and inflammation may actually be keeping these illnesses from progressing at a terrifying pace. 

Strange. 

I Love My Dysfunctional Body

My dysfunctional body has been through what feels like hell and back. It goes back and forth between good days and bad - every morning figuring out if it will be a good or bad day. These days are relative, of course. My worst days are someone else's best days, and my best days are another's worst days. 

This is the only body I've got, and no matter how disruptive it gets, I never wish to be in another body. I often wish that certain symptoms of this body improve, but I still cherish the one that I am in. 

This body has scars, it has stretch marks, it has gone up and down in weight, in function, has wreaked havoc on my internal systems, and has caused some of the most unbearable pain I have experienced. 

This body is missing several organs (large intestine, appendix, gallbladder, uterus, & both ovaries), it has endured a temporary ileostomy, currently has an internal pouch created with the end of the small intestine, and is overrun with inflammation. 

The simplest parts of life can be extremely painful: eating is painful, walking is painful, sleeping, sitting, standing, going to the washroom, being intimate, showering, and (at times) even breathing is painful. My body has required emergency care over the simplest of activities. 

Yet, I love my dysfunctional body. 

I love how much it has been able to endure and that it has given me the opportunity to be both active and still. It has taken me to Italy, Spain, France, Ireland, England, Portugal, Mexico, U.S.A., and many parts of Canada (long before developing Ankylosing Spondylitis). 

It has fought through moments I could not have previously imagined. 

My body is far from perfect - functionally & visibly - but it is mine. It is the only one I have and I am lucky to have it. 

I may have to answer to how well or poorly my body functions on different days, I may not have a say in which plans I have to cancel because my body decides to be temperamental, and I may not be able to prevent further internal damage done by my own mutinous immune system, but it still gets through more situations and more trauma than I thought possible. 

The Five Stages of Weaning

Over the years, I have had to change medications countless times, often weaning one and adding another, sometimes only weaning, or simply adding medications. 

It is always a rollercoaster ride as my body attempts to understand the changes in symptoms, in what to expect, and always tends to fight me. 

I mean, my body has been fighting itself for so long, my immune system believes that most of my organs are imposters and it does whatever it can to rid me of those organs (and has succeeded in a few cases). So when I try to fight back and tell my misinformed immune system that these organs are supposed to be there, it usually revolts for a few days before settling just a little bit. 

I am currently weaning off of a medication, and have been doing so over the past year. My dose has been marginally lowered every month or two. 

This process has been shown to have a pretty telltale pattern, similar to the five stages of grief. 

Stage 1. Denial

The first day tends to feel okay. Not until late night does my body seem to realize that something is missing. It pretends that the inflammation it had been able to ignore for the past while is an apparition. 

Stage 2. Pain

Days 2 through 10, sometimes longer, result in a huge spike of pain. It is as though my body finally remembers that there is an organ or joint there. Or my immune system remembers that there is an imposter in my body and springs into action, causing inflammation, pain, cramping, and a resurgence of awful symptoms with a force to be reckoned with. This spike in pain and symptoms also results in great fatigue, lack of appetite, but severe insomnia. 

Stage 3. Mood Swings

This stage also begins by the 3rd day, and usually only lasts for a day or two, but has been known to last up to a week. These are brutal. They can range from bawling my eyes out at a toothpaste commercial to screaming into my pillow because I accidentally left clothing in the dryer overnight without folding it. In essence: irrational and severe mood swings. It feels as though my annoyance can be triggered by the smallest thing. These are days I try to hole myself up in the bedroom and ignore the outside world, only to protect everyone else from the chance of being screamed at for no reason. 

Stage 4. Energy

Once my mood swings are settled and the pain spike has passed its peak, I often begin to feel like I have more energy. The great thing about flare-ups is that they get SO BAD that when I finally come out the other side, everything seems a little bit better & brighter. Suddenly I will have a little extra motivation, which puts me in an especially wonderful mood. 

Stage 5. Acceptance

This is when my body and my immune system finally settle to the level before the drop in dosage. That's not to say that the symptoms are better than they were, more that they have settled to the about same level (or only slightly worse) just without the extra dose. 

Then we start the cycle all over again. 

Today is the emotional stage. I cried because there was a baby bunny left just outside our yard, and then felt like screaming when I ran my bath too hot. 

Yep. 

Cried. 

Like shuddering crying. 

Please pray for my husband. 

Struggling with Isolation

Self-isolation and social distancing is relatively simple in its concept, and difficult in its execution. 

As I have mentioned on here before, the idea of self-isolation for the preservation of health is not new to me (or nearly anyone with chronic illness). Since becoming ill nearly 20 years ago, there are some themes that have continued that others are just beginning to experience right now. 

Some of these themes include uncertainty of financial security, lack of job security, limited options for exercise and leaving the house, more time spent bored at home but unable to do much, and paranoia over every little symptom that arrives or changes. 

Putting all of that together, then adding the awful combination of lack of sleep, extreme dietary restrictions, and feeling brutally ill all day every day, there should be no wonder why people with chronic illness often suffer from depressive episodes.

Just because I have become accustomed to the self-isolation that the general public is now asked to adhere to does not mean that I find it easy. It is not easy. It is agonizingly difficult. The really unfortunate part right now is that I have to ramp up my isolation because I cannot trust the general public to follow these rules. 

Many issues are weighing heavily on my mind these days. Obviously I am concerned for the health of my family, my friends, and myself. I am concerned for our vulnerable population, who are likely going to be expected to quarantine for a much longer period of time than expected (which is understandable, inevitable and infuriating - like adding insult to injury).  

The other issues that concern me, however, are more subtle to those who are not consistently ill. 

Medication insecurity is one. I do not know if there will be shortages of medications that keep me alive. This is no hyperbole, I could wind up in a critical state without my medications. I am also having to be excessively careful with my own health. 

On any given day, I could suffer a life-threatening throat swell, a severe flare-up of several illnesses, recurring infections, and episodes that normally send me to the ER. There are certain activities of daily living that often lead to these terrifying episodes that I am now avoiding as much as possible - like eating solid food, certain physical activities, or giving in to several emotional extremes. I have to keep myself calm, I have to keep my diet very minimal, I cannot push my body too far with any activity (I mean activities like doing a load of laundry or cooking dinner), and I have to be particularly careful about becoming dehydrated. Simple things, like these, are often what lead me to require emergency care. I am desperately trying to avoid needing that care. 

The hard truth is that no one is doing all that well right now. Everyone who has been isolating is struggling. Adding in an illness (or multiple) that never goes away adds an additional layer. 

We are being asked to stay away from friends, family, and the general public. 

We are being asked to change our routines and behaviours for an invisible disease.

We are all facing a novel situation - no one knows how this will all unfold, but every single person is being criticized for their response. 

We are all being asked to forgo all of our regular daily activities even if people have zero symptoms.

We are all concerned with finances, job security, food security, and walking a fine line between over-reacting and underestimating the power of this pandemic. 

We are all being asked to trust in our government and healthcare officials - people who have not always given us much reason to offer our trust. 

We are all being given mixed messages incessantly on social media, which is then compounded by the fact that we are all much more exposed to social media. 

We are all bored, we are restless, we are desperate to go outside and be social, but for the safety of our neighbours and for the greater good, we are asked to bury those instincts and come up with new and creative ways to access the outdoors.

So here are my current struggles - many of which are ongoing and began long before this virus ever reared its ugly head, and have now become amplified: 

• My sleep schedule is glaringly sporadic and insufficient. Insomnia is wreaking havoc on my body and mind.

• My IBD seems to reverted back to an old 'normal', one that allows for very little solid food. When I DO eat, from sheer desperation and exasperation, I suffer the consequences, which are often unbearable. 

• I am weak. Not just my immune system, but my entire body is already fighting a life-long battle with a staggeringly long list of symptoms. My body is exhausted. With this exhaustion logically comes a blow to motivation and the ability to participate in anything productive or active. 

• I am on immunosuppressants and have had the thought of dialing back those doses to give me a fighting chance against Covid should I face it. I know I am not the only person concerned about this. 

• I have appointments with specialists and plans for medication changes, but I have no idea what my care looks like going forward. Medical necessities, like appointments, regular bloodwork, updated scans, action plans, and crucial regular maintenance have all been postponed indefinitely. I know and understand that my normal/daily chronic illness needs are not a priority - and they shouldn't be. I have survived much worse than what I am currently dealing with. It does weigh on my mind, though, to just sit at home and take care of myself, crossing my fingers that when I do finally get to see my specialists that there will not be any irreversible damage done to my system, and hoping I can avoid catching this novel virus. 

So I am sick of not being able to eat properly. I am sick of not being able to sleep normally. I am sick of spending half of every day in the bathroom, suffering the painful consequences of trying to eat. I want to get outside, be active, be productive, learn something new, bake, cook, play music, sing, run errands, catch up with friends and family, take the dogs for long walks, and a laundry list of other things - but my body is simply not allowing that. All the while watching the unfolding medical situation that is plaguing our entire existence.

None of this is easy. 

However, I am willing to continue in this current state for several months. I am expecting to live in this manner for months and then a little bit of an improved existence once this virus is less rampant: for the protection of my own health, for the protecting of those around me, for the greater good. There are moments in life when certain desires, or perceived necessities, are not worth the risk that they pose. 

Please stay home. 

Everyone is suffering. Everyone is having a difficult time. We do not want to extend this suffering any longer than what is necessary, but the more we defy guidelines that are temporarily for protection, the longer this will drag out. 

Stay safe. 

Balancing Act

Managing Covid-19 and the economy is going to be a balancing act. Once we have reached and passed the peak of this first wave of infections, it is likely that we will experience a rise and fall of cases in a rollercoaster pattern for the next year (potentially longer, if we see a return every winter season like other contagious viral infections). 

What I, personally, expect to see is that restrictions are lightened when cases are consistently trending downwards. The most vulnerable will have to be cautious long-term, but social distancing requirements will likely lessen to a certain extent. Then, there will likely be another surge of cases (ideally fewer than this first wave), where distancing requirements will become more strict again to ensure the capability of our health system to handle the increase. 

Many will have a plan in place to be able to work from home if this happens. More pressure will be put on companies and employees to have a 'pandemic-backup-plan' in place so that people can continue working and making money even while isolating, or even to have staggering shifts so that fewer people are working within an office setting at a time. 

Life may not return back to the 'normal' we had become so accustomed to. It may resemble it, but with key changes and adjustments for the next year or two. 

What it gives us is an opportunity to adjust our thinking - what, in our lives, in our companies, in our homes are actually essential? How can we ease stress and prepare for such situations before they happen so that it does not become such a blow? How can we protect our employees, our businesses, and our most vulnerable? 

There are many changes that will be positive - for the environment, for variability, for stress levels, and for expectations. Other changes will be horribly difficult. We are still smack-dab in the thick of it, so we will not know the full extent of the impact on our world until the bulk of the crisis has passed. 

Things are hard. 

They are hard for nearly everyone. 

As an alternative to the constant sense of stress and worry, what changes are you actually looking forward to? What policies and adjustments to our daily living do you think will eventually have a positive impact? 

You Might Have a Chronic Illness if:

You Might Have a Chronic Illness if: 

• You were told nothing was wrong months-years before a diagnosis was confirmed

• You have ever felt disappointed when a test comes back negative

• Rumours have been spread that you fake being sick

• You have peddlers in your dm's daily trying to sell you a 'cure' (that doesn't actually exist)

• You hear 'at least you don't have _____' (which is usually true, but doesn't often help us feel better)

• You feel guilty all the time about being caught in between being too sick and being not quite sick enough 

• You make a game out of guessing what caused a flare-up

• Your pharmacist and/or ER departments know exactly who you are 

• You don't often physically *look* ill and have been punished for that fact at some point

• You often find yourself in the waiting rooms of specialists whose primary patients are elderly

• You go back and forth between 'not letting the disease control you' and 'listening to your body' at different times in your life

• You realize that "Remission" does not always mean 'symptom-free' 

• You know more about medications and adverse reactions than a first-year pharmacology student

• You have been told, at least once, that it is all in your head

Ambulatory Wheelchair

I am an ambulatory wheelchair user. 

This means that I can only walk short distances, my body tires easily and can give out, and I often need a reliable place to sit everywhere I go. 

I am lucky enough to have decent days when I can walk with a cane, rare days when I do not need a cane at all (though I still limp), and days when I require something in between, like a walker. 

I have required these walking aids since the first year of being diagnosed with Ankylosing Spondylitis. 

I am lucky because I have options. These chronically painful illnesses can be volatile, so I never really know what kind of day I am going to wake up to, but I have a pretty good idea of what aid I might need when I leave the house. 

It can be confusing. It can appear odd. It is not consistent; even though the pain itself is always there, some days are better than others. 

Just think of me as an elderly person with a limited amount of energy and a constant source of joint pain (among other serious illnesses and a long list of medications). That is, essentially, how my body behaves. Sometimes I just need to be wheeled around and have a comfortable place to sit in order to prevent severe flare-ups, as well as allow me to get out and do more. 

An ambulatory wheelchair means a bit of freedom for me. 

My 'Tells'

I think everyone has their own unique 'tell' or set of 'tells' that signify when that person is really struggling. 

Maybe you become very quiet or less focused and pull back from conversation. Maybe you adopt the 'pain posture', which can be very common. (Essentially, the pain posture refers to a slouched over position while sitting, standing, or walking, in a subconscious attempt to protect ones own internal organs). 

There are a lot of different ways that can show how someone is struggling without it being especially obvious. People do not always have to be wincing or crying, yelling or moaning, they may even look entirely normal. 

Here are some 'tells' that can be a good indication of a person in pain:

1. Fidgeting and posture shifting. 

People who are in pain try to distract their own minds from the pain by doing, well, anything else. We tend to fidget, change our posture or position, stretch, move around, pace, or just continuously move. Many people in pain may shake, bounce their legs, rock, or move their feet. One of my personal tells when I fidget is I tend to flex and release my toes - something that can be hidden a little more easily. 

2. Changes in Gait

People in pain may show changes in how they walk. Their bodies are trying to either correct or compensate for the pain that they feel. You may see someone hunched over, a slight limp, a slower pace, shuffling, dragging feet, or any other of the various ways our gait can show pain. My personal tell, which I did not even realize I was doing until years later when my husband pointed it out, is that I start to walk pigeon-toed... and I don't mean a little bit pigeon-toed. There were times (so I have been told) where I was essentially walking on the outer edge of my foot, with my toes pointing 90° inward. This sounded insane to me. Though when I had him point it out when I was doing it, there I was, my feet both pointing inward. This particular 'tell', I'm guessing, is my body's way of trying to open up my hips. The pain in my SI joint becomes so hindering that my body tries to open my hips by pushing my feet inward and stretching my thighs out to the side. That's my take on it, anyways. The best part about this tell is that I don't notice that I am doing it. It is not on purpose. This allows for my husband to gauge whether or not I am telling the truth when I say that "I feel fine". 

3. Eye Colour

This 'tell' actually refers to any colour in the face. Most of us tend to become more pale the worse that we feel, but, luckily, makeup can hide this lack of colour. Eye colour, however, is more difficult to hide. When I am particularly sick, my eyes become more translucent or can even appear grey. The blue can be lost almost entirely on my worst days. I may have colour in my cheeks and a 'glow' on my face, but if my eyes are grey, chances are that I am feeling pretty rotten, but wearing amazing makeup. 

4. Attention & Attitude

We all have bad days. We all have days when we feel 'out-of-it' or can't quite concentrate. Losing focus and forgetting basic vocabulary is not necessarily connected primarily to pain, but it can be a way to read someone if you think pain is an issue. When I am in a ton of pain, not only do I speak less, but my speech can change in very obvious ways. I will forget the conversation (if I even participate), I will lose focus and forget words or the meanings of simple words. Most importantly, though, I will lose my humour and sarcastic edge the more pain I am in. Not entirely, of course. I still make jokes even in my most vulnerable situations, but when I start to get 'snarky' or make sarcastic remarks to my loved ones, that is a sure sign that I am feeling just a little bit better. Personality. Personality is what can get lost when all we can think about is pain. Personality changes are one of the most highly reported changes that someone will notice when a loved one is suffering. It's not on purpose. It's not necessarily even controllable. It's simply what happens when someone is dealing with huge amounts of stress - especially pain and illness. It can be something to watch for - to notice. Although it is never okay to treat others poorly just because a person is suffering, those negative emotions are more than reasonable, they are expected. That's when communication becomes key in managing those brutal times. 

5. Sleep Habits

This one can seem really clear, but it can be a lot more complicated than a straightforward lack of sleep. 

Illness and pain can wreak havoc on sleeping patterns. Sleeping too much, too little, suffering from insomnia or nightmares, lucid dreaming, sleepwalking, changes in sleep habits or sleep times... Even something as simple as sleeping more deeply than usual, or waking up disoriented, these can all be signs that our bodies are fighting something more than our day-to-day normalcies. 

My biggest 'tell' of when a big crash is coming is that I will start grinding my teeth when I sleep. I will wake up with a sore jaw and a headache, I will have bouts of insomnia and of sleeping far too deeply without dreams. That, or I will have a string of terrifying lucid dreams, episodes of sleep paralysis, and I'll just randomly fall asleep at odd times through the day for a minute or two (micro naps). I will also often wake up disoriented - having forgotten where I am or what day it is, who is home, etc... 

These are some examples of ways to tell when friends are suffering. 

The biggest problem with most of these is that they can be very well hidden, especially if you live alone. I know that, for me, I can look the picture of health and be having a crash day. It is not always as obvious as shaking limbs and tears, or constant moaning and complaining. Crashes and high levels of pain can be hidden by adrenaline, makeup, smiling, and consciously combatting our own unique tells. I often have to actively stop myself from fidgeting in public so as not to give away any sign of discomfort. 

It is fascinating what our bodies can handle, and what it can hide. 

What are your biggest 'tells'? Have your friends or family ever told you about any of your own that you were previously unaware of? 

I'd love to know some of the intriguing ways we hide or mask our pain! 

The above photo ⬆️ was taken at the ER for a severe throat swell.... mere hours before the photo below ⬇️

By the time this photo was taken ⬆️ I was walking so pigeon-toed, that I was debating using my wheelchair to get back to the vehicle. But it was so muddy by this bridge that I would have gotten stuck. 

I was taking a photo of my makeup ⬆️ but this is the beginning of a severe crash. 

I barely made it through this yoga session ⬆️. I was so nauseated that I was hunched over the entire day - I could not stand up straight. This was one of the most difficult - and, therefore, most important - yoga sessions. 

It's the little 'tells' that quietly, and subtly, let others into how we are truly feeling internally. 

The Lighter Side of: Diets that Don't Work

I used to try extremely strict diets and believe that if I stuck to it perfectly, with no slips, no cheat days, no junk, that I would become healthier. I used to believe that if I adhered to the perfect restrictive diet that I would not only be physically healthy outside of my illness, but that my illness would improve (or that I would at least go into Remission).
Strict food diets did not work for me in that way.
That is not to say that they do not work... it simply means that my body's underlying autoimmunity and inflammatory responses did not respond - my body did not respond. In fact, those strict diets sometimes made things worse. I lost weight too quickly, became dehydrated (which is really easy to do without a large intestine helping you absorb), and depleted my strength.

That's okay though!

I know that I didn't do anything wrong.
I know that I did not cause my illness.
I know that I am not actively making it worse.
I know that I have tried every possible avenue I can think of.

The Lighter Side of diets that don't work is that I no longer stress about following such a restrictive diet. Going to a restaurant does not cause panic. I know that I can find almost anything to eat on a menu - especially since restaurants have made such strides into gluten-free and accommodation territory. Because those multiple diets were not successful, I can allow myself more options, I can enjoy my food without ever wondering if I am making myself worse. Of course, there is always new information out, and I may find out one day that eating yogurt or drinking herbal tea or practicing yoga were all factors in worsening my illness, but for now that does not appear to be the case, so I am going to enjoy my life.
I also make mistakes.
I rarely eat things like bell peppers, mushrooms, or tomato sauces at home because they can make me feel worse or cause problems, but when I am out for a special occasion and I know I will feel like junk the next few days anyways, I indulge.
Okay, maybe not the mushrooms anymore after the last mushroom incident.... =S

I still follow a diet that is specific to my body's needs and responses (instead of following a diet laid out by other people who are not me), and I do not think of occasionally eating poorly as 'cheating'. Comfort foods provide comfort for a reason. Sometimes my body requires some carbs. My diet is ever-evolving - constantly finding new foods that do not make me ill and new ways to cook old favourites in a healthier way.

Enjoy what you eat. Be kind to your body.
That's it!

Follow doctor's orders as best you can, listen to your body, and if you feel worse, talk to your doctor or nutritionist and maybe change things up.

Remember that we do not know everything about food or chronic illness. If we did, illnesses would no longer be chronic and one type of strict diet would likely work an an entire variety of people with similar illnesses. If diets have not worked for you, that is not because of anything you have done, especially if you follow them as strictly as I did. If a diet or medication works for one person but not another, that does not mean the latter did something wrong. It just means that the disease in their body does not respond the same.
Try the varying diets. Seek out nutritionists. Find foods and a diet that works for you and your experience. There is no one-size-fits-all answer, so look for your own answer.

Keep fighting!

The Lighter Side of: Total Exhaustion

I don't think it is any secret that many illnesses carry with them a component of terrible sleeping habits.
When pain and inflammation are so prominent in your life, the mind is often so focused on either fighting the pain or doing everything it can to be distracted from the pain, sleep cycles suffer. You sleep too much, or too little, you have insomnia or you cannot stay awake - or a paradoxical feeling of both, where it takes hours to fall asleep but then your sleep is never restful enough to actually feel entirely awake either.
Waking up several times a night, or falling asleep and snoozing through an entire day... or two... or three.
Body tired.
Mentally tired.
Physically tired.
Tired muscles, tired organs, tired eyes, tired mind.
And, of course, never in a consistent manner.

The Lighter Side of Total Exhaustion is that there are ways to sit and try to allow yourself to enjoy it.
You can lie in a bubble bath (only if you know you will not actually fall asleep). You can zone out to music, to a movie, to a video game - anything that requires zero concentration or analysis.
Requiring to do nothing has opened up some more discoveries: like videogames!
I have discovered the enjoyment of playing video games (when I was young I was too active in team sports and musical activities and school functions to even look in the direction of gaming systems). I played once in a while - almost always at the houses of friends - but they were never what I would consider to be a productive pastime, so I never really got into them.

Now, after experiencing several levels of total exhaustion, I have come to appreciate and enjoy unproductive time. Not all time has to be productive.
I know - it was very strange for me as well - but I have enjoyed getting acquainted with these new ventures they call "Wii" and "Xbox". Throw in a mind-numbing movie or two and I have myself an entire day of unproductivity - one fit for someone who experiences a painful level of exhaustion.

"I Believe You"

The best thing that you can do for a patient struggling is convey your belief in them.

Chronic illness is entirely full of question marks - especially if tests are not all conclusive or the symptoms are invisible.
We go from being dismissed, to being tested, then dismissed, then told it is all in our heads, to actually arguing with health professionals, to actually wondering if we are exaggerating or if it really might be in our heads, to being diagnosed, misdiagnosed, told one thing from one group and other things from alternative medicine practitioners.
Then, through all of that nightmare, we deal with the stigma and the criticism and the judgement from people with the same struggles as well as people who have no idea.

So if your friend or family member is struggling, if no one knows what's wrong and symptoms are being dismissed as due to 'stress' or a thousand different excuses, knowing that at least ONE person actually believes you can make the difference between continuing to fight and giving up... and giving up doesn't always mean doing something drastic. It can mean withdrawing from people, relenting and accepting a misdiagnosis from being incapable of fighting anymore, resorting to meds that only mask the pain, or just living with the symptoms - alone - and telling no one. Suffering in silence - knowing that nobody believes you.

We all need validation that how we are feeling is real and being conveyed.
We need support.
We need a little trust and a little belief.

I know that there ARE people who 'fake' illness and who abuse the system and who exaggerate and use whatever means they have available to them to swindle good-hearted and compassionate people. Those people have ruined credibility for those who are really in need.

If you don't know what to say, say "I believe you".

The Lighter Side of: Sarcastic Humour

It is fairly clear that sarcastic humour can be a real asset. It can also become cutting to a point of no return.
Sarcasm can be used to talk about serious subjects in a more light-hearted manner. It can also be used as 'back-handed compliments', as full-on insults that don't seem as awful as they really are until the moment for a retort has passed by, and it can be the first line of defense for any uncomfortable topic.

The downside of using sarcasm and humour as a way to handle illness, however, can create a bit of a conundrum.
If we brush off our illness and our symptoms, making light of it, making fun of it, it can undermine the severity of the situation. When we see someone who is laughing or telling jokes, the common assumption is that they cannot be in that much pain because they are still making jokes about it. The problem with that theory is multi-faceted and is broached in another blog post.
By portraying this level of strength and stubbornness, it can often appear as though that person really is not struggling at all. Exuding strength and an unshakeable sense of humour is a wonderful talent and trait, but it can also backfire, badly - because if you're not taking your own illness seriously, why should anyone else?
Of course, I don't agree with that last statement. There is a difference between using sarcastic humour as a coping mechanism and actually being flippant about an illness. I may make jokes, but that does not make the symptoms any less terrible, it simply helps my perception and my mood.

The Lighter Side of sarcastic humour is that it is a powerful coping strategy. The stronger we make ourselves appear, the more we want to fulfill that image. Plus, in your worst moments, sometimes the only positive thing that can be done is to laugh about the situation. If used for good, and not passive-aggressive, back-handed compliments, sarcastic humour can conquer any tough situation, nearly any uncomfortable topic, and it can lighten the mood - even when the mood is incredibly dark.
And do not let anyone dismiss the seriousness of your illness because you smile each day or work hard to maintain a good attitude towards your health. Outward appearance means diddly-squat when it comes to internal pain, swelling, inflammation, bleeding, and a variety of psychological and physiological symptoms. A sense of humour will help you get through it.

The Lighter Side of: Progressive Diseases

I would say that most of the time, I am working hard to maintain what I am currently feeling. Not because how I currently feel is all rainbows and sunshine every day, but because I know that things can get worse... a lot worse. They *have* been a lot worse. They will worsen. That is not to be pessimistic, it is to understand illness.
Chronic illness is likened to a rollercoaster ride for a reason. For many people this is a very volatile experience - good days, bad days, without much consistency and with each day being almost entirely unexpected. Although it does not define who we are, it can unfortunately 'run the show' at times, especially during severe flares.
One of the many reasons I try to stay active, even though some activities cause severe pain, is because I want my body to be as strong and as tough as possible. That way, when things do become worse, whether temporarily or not, I will have that core strength there to help me recover.
It can appear to be a paradox - to be healthy in muscle and strength but so weak in internal organs. To have some semblance of physicality while simultaneously struggling to walk.

I want to maintain what strength and flexibility I DO still possess, while hoping and working towards improvement, all the while knowing and understanding that I have progressive illnesses.... Illnesses that have a general downward trajectory, even though it might not be linear.

The Lighter Side of progressive illnesses is that I have a generally clear idea of where I may wind up with my illnesses.
I can *sort of* see what is coming up ahead -> in the overall scheme of things anyways. 
It isn't pretty, but I try not to dwell on the future of these diseases too much, because it can be a difficult and highly distressing image to come to terms with.

There are some hard truths when it comes to disease:
• I have no large colon and I have an internal J-Pouch. There are high statistics showing failure in these if surgically created early in life, so it is highly likely that I will eventually require a permanent ostomy.
• I have Macular Degeneration - and an early onset that many ophthalmologists have never seen. There is no predicting how quickly this disease will progress or in which ways. The reality is that I will likely go blind... probably over the next 10-20 years. Let's hope it is the latter or even further down the road.
• Due to so many allergies, intolerances, and lack of available medications, my Ankylosing Spondylitis will progress. I am already using a wheelchair at times, and this will become much much worse unless a cure is found.
• I have Hereditary Angioedema, and although it is not necessarily progressive, it does have a direct link to stress (stress of any kind can trigger an episode but stress itself does not cause the illness).

There are a lot of 'what if's and 'what may happen's here, but the general understanding is that many of the illnesses I suffer from will continue to become worse over time: Psoriasis, Migraines, Raynaud's, additional development of autoimmune and inflammatory conditions, Tachycardia, Hashimoto's Thyroiditis, hell even the AVM in my lung could eventually cause an issue.

So my future may be blindness, barely mobile, with a permanent ostomy and maybe even the removal of my thyroid. Plus trying to medicate my other illnesses with blood infusions and any other medication, natural or pharmaceutical.
That may be my future.

Knowing this, however, is a curse and a blessing. It is a blessing because I also have had time to prepare as much as possible. Prepare mentally, but also prepare physically. Let me tell you, these illnesses may be progressive, but they sure as hell won't progress without a fight. I am gonna go down swingin' every step of the way. I will modify what I do and how I experience the world so that I remain happy and healthy in my mind and in the parts of my body that can still be strengthened.
That is all I can do.
It is all I can hope for.
And maybe if I keep fighting, maybe all of this inflammation and autoimmunity will just give up the fight and leave me be.
Plus - what is the point of feeling that negativity day in and day out? We already feel pain and illness every day, why dwell on an uncertain future when it might get worse - or better? Why wake up each day simply to torture myself with the statistics and the progression?

Knowing that my body will worsen much earlier in life and at a much faster pace than the average person has been both a struggle and a positive factor in my life.
So why not attempt to focus, at least the majority of the time, on the positive aspects, and build upon that view?

Do you know what none of those statistics really ever tell you?
Stats don't usually show whether or not a person was happy. Stats do not show an individual's life other than what their medical records show. Stats do not tell you if those people experienced love, excitement, adventure, all of those other experiences that go far beyond physical pain. I focus on maintaining what I can, strengthening where I can, and looking towards the aspects of my future that are positive - while preparing, as I best know how & for what I have been told, for what could be negative.