Good Symptoms, Bad Symptoms

It is really sad when even 'better symptoms' have to be met with suspicion.

With many chronic illnesses come many chronic symptoms. There are these sets of symptoms that become your 'new normal'. They rarely go away and they stay within a certain range of your own personal normal for years on end.
With IBD it might be more frequent bathroom breaks - so instead of the normal 1-3 times a day, it might be 8-10 times a day (or more), for years and years.
For certain levels of arthritis, instead of taking 20 minutes to shower and get ready in the morning, it may take an hour or more because of joint pain and stiffness.

What can be a little disheartening is that if these chronic symptoms ease abruptly, instead of simply celebrating improved symptoms, we have to worry about the reason behind the change. By all means, sometimes it is just a randomly good day, but the majority of the time it is because of something else unsettling.

If I suddenly go to the washroom a lot less during a day that doesn't make any sense, instead of simply celebrating, I have to be concerned about excess pain, abdominal distension, nausea, or anything else pointing to a potential blockage.

If I suddenly wake up with a great deal of energy, it may be a pleasant surprise, but it could also be a sign of increased heart rate or heart palpitations.

It is unfortunate that improved symptoms have to be met with such concern and suspicion, but it is reality.
Usually a one-day one-off doesn't get me too concerned overall. If symptoms persist, however, whether they are more pleasant or not, I have to bring forward any back-burner thoughts about potential problems associated with these changed symptoms.

As I wrote yesterday, I have had a few days now of better sleep.

My 'normal' usually means that I wake up every couple hours or so - to go to the washroom, or because of over-heating, and I have always had issues with sleep. I suffer from insomnia a lot of the time, I suffer from sleep apnea on occasion, and I rarely reach the REM level of sleep without aid. So the other night, when I fell asleep almost instantly, only got up once in the night, and slept in overall until 2pm, while I was relieved by the sleep itself (and the dreaming), this was also an abrupt and 180° contrast to 'my normal'.
Which means that it was suspicious.
Then, after sleeping that much, feeling like I could sleep the entire day away was another sign that this was not just a 'good night' out of the blue.

Today I feel the same.
I slept really well. I was only up once in the night. I had vivid dreams and several of them. I slept in and slept well, but now I do not feel awake. Not entirely. Yet, although the bulk of yesterday was spent trying desperately to keep my eyes open, in the evening I had a burst of energy and felt wide awake.
I have been placed on more Vitamin D, so that is a start, but I am more concerned about a bug or Mono. That may sound paranoid, it may sound alarmist, especially after only a few days feeling this way, but this is the reality of people with chronic illness. A simple change in symptoms could mean something simple, but if it means something more complicated, we have to catch it asap.

I get Mono almost every year - every two years at least. My immune system is dysfunctional, so when I got mono when I was 17, the virus is never actually fought out of my system. It, instead, goes dormant (or so was explained to me by my physicians). So, when I get particularly rundown, it tends to make an appearance (very much like colds, shingles, or any other illness that kicks you when you are already down). It is not usually a full-blown infection like the first time - it is a little more subdued. So, instead of four months of doing *nothing but sleeping*, it winds up being 4-6 weeks of mostly sleeping and never feeling rested.
The problem is, that kind of feeling is also in the realm of 'my normal', so when I have a few weird days like this, it is almost impossible to know for sure if this is just a weird few days or if there is something else going on.

There is still good news.
Because I sometimes develop mono from the virus already in my system, I am not considered contagious. I mean, I don't plan on sharing drinks or double-dipping chips or anything reckless, but the attack of my body is not contagious. So that's a positive.
Plus, I may just be having some odd days. It may not be my recurrent mono. It might just be that my body is confused. Or maybe my body feels the change to Autumn in the air and is just ready to check-out for a few days. Maybe the fact that I had nothing really planned this week gave my body the hint that now was the best time to crash. Maybe I have been doing too much lately. Maybe my body is reacting to changes in medication.

Or maybe, just maybe, I am simply really tired this week.

The Lighter Side of: Exhaustion

For whatever reason, my body has decided to take a little sabbatical.
It is not as though I feel particularly awful, just tired. Really tired.
Going from full-fledged insomnia to sleeping half-way through the day is an adjustment and I am not quite sure why.
I have been prescribed another 16 weeks of 50,000IU of Vitamin D - so that may be a factor. It is possible that I caught some sort of bug. It is also possible that Mono is back (it likes to visit about once a year since my immune system can be so deficient).
It could also just be that I am rundown and my body sensed that I had few obligations this week, so it was good timing for a crash of exhaustion.

This is when I usually describe myself as feeling 'like a zombie'. I am never quite fully awake, regardless of how much I have slept. I am almost going through the motions, desperately trying to keep my eyes open.
Zombie.
Not dead, not feeling entirely alive.
Okay, that's a bit dramatic.
It's just that I do not feel awake enough to be completely aware of anything that is going on. (No, I do not drive when I feel this exhausted). A little lightheaded, a little dizzy, essentially awake only for portions of the day to feed the dogs, cuddle, bathe, and eat. That is my day today.

Luckily for me, this is not a new thing. My body does this at various times of the year, sometimes for a year or two straight.
I do not miss those years.
I love having energy, so this level of fatigue and sleepiness can be a real downer. Though, because I have dealt with this particular problem a lot in the past, our home is specifically equipped to handle a lot of time resting and sleeping.

The Lighter Side of exhaustion is that there are many ways to make life comfortable for these zombie stages.
There are ways to even make it feel spa-like/luxurious!
Little things like having special bubble bath or bath bombs, face masks, investing in a good bed that stays cool, looking for extra comfortable and/or silky sheets. Listening to music, podcasts, watching movies. Diffusing essential oils, making the house feel and smell like an oasis.
We have a Leesa mattress, which has been incredibly comfortable and keeps me cooler than traditional beds. I have one or two pillowcases that are silky. I have an oil diffuser in the bedroom, the dogs cuddle with me on our bed, I have earbuds by the bed to listen to meditations or podcasts.

If you have to spend a lot of time in bed, even when you would rather be up and moving, you may as well make it feel as luxurious as possible. There are lots of little tricks that can make it feel like less of a burden... like wearing pajamas that make you feel beautiful or sexy, wearing a face mask infused with lavender, diffusing essential oils while you sleep, indulging in silky feeling lotion, sleep in your favourite sheets, wearing cute slippers around the house, playing music while you sleep...

Anything to make this kind of *blip* more of a positive experience is worth it. Trust me. Otherwise you may just resent every moment of these episodes instead of actually living through them.
That's all we can do, really.
Instead of hating every uncomfortable moment, learn to make choices that complement them or make them easier. Instead of hating every moment spent in bed, barely awake, make it feel like a choice. Give yourself spa days.

If your body is forcing you to rest, forcing you to sleep or spend your time not-exactly-awake, why not make it feel like it was your choice to do that and take advantage of the downtime?

The Lighter Side of: Weird Allergies

I have had odd reactions to various medications and a few food items.
Some reactions have been simply unpleasant, some have been life-threatening, but (as I have been told time and time again) most have been deemed 'odd'.
It may be because the medication itself is an odd one to be allergic/have an intolerance to. It might be because the actual reaction, itself, is odd. It might be because of allergies to similar substances but not others.
Whatever the case is, my allergies/intolerances/reactions have been odd.

The Lighter Side of having weird allergies is that patients like myself are part of the reason researchers continue to look for several different options to treat one illness. I am lucky that, for some of my illnesses, there are more options than those which I can no longer take.
For Ankylosing Spondylitis, I am kind of out of options for the time being. For Crohn's Disease and the inflammation in my J-Pouch, I have been lucky that the medications I currently take seem to be working fairly well, because I am essentially out of additional options with those diseases.
For other issues, though, if I am reacting poorly to one medication, there are others that I can try. There are other avenues I can take.
Plus, above all, research continues in many chronic illness groups, so even if additional options are not here right now, there will likely be more options in the relatively near future.
Another reason to maintain a level of optimism.

The truth is, chronic illness is highly unpredictable, highly subjective, and the research is very confusing. We are lucky to have any options at all, let alone several avenues to pursue. It also means that it is intriguing to researchers.
This is a good thing.
More and more people want to understand chronic illness, so there is this drive to learn more about what may cause this massive umbrella of diseases and how to treat them. More intrigue, more drive to learn, more fascination - it all means that more people will want to find the answers.

So chin up.
If you have odd allergies and intolerances like I do, there is always more research being done and more options being found. Medical research makes more and more strides every day. So I put my faith in those who work tirelessly who ultimately help me lead a better life.
For now, I enjoy every good moment that I experience and cherish my good days.

The Lighter Side of: Feeling Everything

Pain is a part of life. Pain is knowledge. Pain informs us when we are doing something wrong, when we are ill, when something inside our bodies needs attention, etc...
The more chronic pain a person experiences, the more adept one's system becomes at identifying multiple sources of pain.
In essence, the more pain we have, the better we can isolate what it is we are feeling.

More pain and suffering multiple sources of pain is not fun. It's not something we dream of learning about other than on paper. No one truly desires to be in constant pain. No one wants to feel everything within their bodies. There should be some disconnect between vital subconscious functions and our experience.

The Lighter Side of feeling everything, though, is that we can become exceptionally in tune with our bodies.

Who knew that I would learn what an inflamed pancreas feels like?
The fact that I can feel when my intestines are bleeding, or when my bladder is swelling, when my SI Joints are particularly inflamed or eroding, or when I used to get small ovarian cysts, is a bit of a marvel.

Living a life with pain also means that I have learned what the different types of pain feel like and what they mean. I can tell the difference between muscle pain and ligament pain, between cramping muscles and inflamed joints, between swollen tissue and inflamed tissue. I have learned how certain internal organs feel... especially my intestines. I can feel when they start to bleed, when they are producing a lot of mucous, when they are inflamed, or swollen, or cramping. I have learned to feel the difference between a partial blockage and a cramp. I have learned the difference between a swollen intestine and a flare-up of inflammation. I can even tell when I am experiencing a flare-up of my J-Pouch or in the higher portions of my intestine.

This all comes from brutal experience, but it is all information that, in turn, helps me take better care of myself.
It's not all bad.

The Lighter Side of: Waiting to Vomit

Vomiting is just plain awful.
The best part about a retching fit is the blissful moment after finishing when the nausea has subsided and you know you have gotten everything out.
What happens, though, when you catch a bad flu bug or develop food poisoning, when you vomit several times in the day and don't really get to enjoy some time without nausea?

We all know the feeling - knowing you are going to vomit but unable to control the timing. The chills, the sweats, the excessive salivating, the sudden urge to run to a washroom: all telltale signs of an impending puking fit.
It is the worst kind of nausea.
Well, the worst I think I have experienced.
It's the nausea that remains at that 'just-about-to-puke' moment, without any relief, even after the vomiting. Nothing you do helps. It just remains at that cusp - trying to dry-heave just to get the vomiting going.
Unfortunately, your guts are in control.
You can try to get it started, of course, in those horribly desperate moments, but overall, your intestines and your stomach rules that domain.
Not only that, but sometimes this 'puking limbo' can last for hours. Hours!

There's some good news, though. (There is always good news, that's kinda the entire point).

The Lighter Side of waiting to vomit is that, during that limbo, you can prepare!
If you know you are going to vomit, if you know it may take a while but that it will happen, you can get things ready for yourself.
You can do things like:
• Drinking some flavoured water** or ginger ale.
• Putting your hair up and out of your face.
• Grabbing an easy-to-clean bucket instead of having to hunch over with your face by the toilet seat.
• Putting a pillow down on the ground so that when you are sitting or kneeling, it doesn't hurt your knees or bottom.
• Getting some Gatorade or electrolyte-boosting beverage ready for the loss of fluids.
• Making sure you have some carbs afterwards.
• Grabbing some mints or having your toothbrush ready.
• Having Kleenex ready.
• Preparing a cold compress to help with that hot flash that always arrives directly before retching.

Sometimes you can even prepare by making sure you are alone.

I deal with nausea every day. Not always every minute of every day, but the majority of each day I spend with nausea. I experience the 'puking limbo' on a regular basis, and although it is uncomfortable, there is definitely something to be said about being able to prepare.
One of my biggest pet peeves is having to vomit in front of other people - especially in public restrooms.
I prefer to Puke in Private.
That extra time spent nauseated, knowing I am going to vomit but not quite there yet, allows me to wait until a public washroom is vacated, or finding a more private time
at home so that I can have my privacy.

That time feeling so nauseated might be awful to experience, but preparation is not usually a negative thing. If I am going to have to handle it anyways, I may as well find something good about it, right?

**Flavoured water is a tried-and-true method of easing the brutal parts of vomiting. It can ease the acidity in your throat, tone down the disgusting taste, and can help so that your throat, mouth, and gums don't burn as much during the fit. While ginger ale works well, the carbonation does not help the abrasiveness. Down enough flavoured water, however, and it is a slightly more pleasant experience.
Okay, 'pleasant' is not the right word.
Less terrible? A little less disgusting? A little less painful?
Try it. It helps!

The Lighter Side of: Little Extras

It's not always the big symptoms or diagnoses that really grind someone down. Sometimes it's all those little extra complications - the unexpected and seemingly small ones - that turn out to be the final straw.

See, when we are faced with a large problem, we can run towards it, head-on, and know exactly what we are fighting. Sometimes the problem is so monumental that we cannot even fully comprehend the magnitude of the problem, which can be a good thing. This 'big thing' becomes a symbol of a conquerable force. We can see it. We can face it.
We can easily look up at a mountain and have hope.
We save our energy and put it towards fighting the big fight.

When we are faced with illnesses like Inflammatory Bowel Disease, Autoimmune Arthritis, Liver Disease, Multiple Sclerosis, Kidney Disease, Lupus - we understand the fight we have ahead of us. We know that these are big diseases - we understand that we are going to have to fight every single day. There is hope, though, that with the right treatment plan, the right diet, the right amount of exercise, the right team and support system behind us, that it is conquerable. We know that it doesn't necessarily mean curable, but that we can still maintain a very fulfilling life if we work hard and fight.
But what about all of the little things along the way?

When we are trying to handle major symptoms and entire illnesses full of a multitude of symptoms, the more 'minor' symptoms get pushed to the side as collateral damage.

Examples may include headaches. Severe nausea and vomiting. Bloody stools. Dizziness. Excessive sweating. Changes in appetite. Weight gain. Weight loss. Changes in vision. Excessive bruising. Thinning skin. Changes in sexual desire. Brittle or thinning hair. Muscle weakness. Tremors. Abdominal cramping. Mood swings. Depression. Loss of breast tissue. Severe fatigue. Decreased temperature regulation. Inability to be intimate. Inability to travel.

These are some examples of symptoms that simply 'come with the territory' of having a major illness.

With something like Ulcerative Colitis, the major symptoms that some patients are forced to focus on *may include* incontinence, urgency, severe pain and cramping, severe nausea, intestinal ulcers, blood loss, hair loss, weight loss, gas & bloating, malnourishment. Dealing with regular scopes, perhaps NG tubes to feed, constant visits to the hospital, fissures, fistulas, polyps. These are major. These require full focus and attention.
So that is where our focus goes.
We see this list and we have hope that we can somehow find a way to cope.
We look at the mountain.

What we don't see are the smaller issues that can ruin entire days.
Let's say we are able to make it to the washroom in time. (Score!) We remembered to bring a puke-bag in our purse or pocket and didn't have to vomit in public. (Double Score!) We are having a decent pain day, so we can actually manage to go to school or work or even see some friends (OMG YES!)
But then we notice that we have a bald spot.
Or maybe we have sweat through three shirts already in one day.
Or maybe none of our clothing fits and we didn't realize because we spent the last three days in the hospital.
So the day we finally get to DO something,  we experience saucer sweat stains, nothing fits, and we have to find a hat and try to hide the hair that is falling out.

It may not seem like much.
In the grand scheme of things, these are not considered severe issues.
But they can make or break someone's entire mood or experience. They can turn a strong human being into a puddle on the floor.

Here's the good news:
The Lighter Side of the little extras is that they can often be fixed, or at least concealed. When you have so many brutal issues to contend with, why not make life a little bit easier if you can? It may not always be a simple fix, but as long as you know the risks and discuss options with whichever professional is handling your care, why not allow yourself a break?
When we deal we such severe problems, we want to experience normal parts of life. Things like a healthy sex life, or being able to shower, or being able to brush our hair, or being able to wear normal clothing - these are all basics that severely ill people should be able to enjoy. These are the problems that feel utterly unfair when they occur.

So what do we do?

Losing hair? Indulge in a semi-professional wig. It may cost a bit, but why the hell not? We grin and bear so much, we should be able to make something as 'simple' as unexpected hair loss be a little bit easier to endure.

Have scars that really bother you? Why not go and discuss your options with a plastic surgeon? There is no harm in asking if they can be diminished, covered with a cool tattoo, or concealed with some new innovative (safe & approved) treatment.

Suffer from back spasms associated with arthritis? There are creams and physiotherapy exercises and even medications that can help with that.

Suffering from severe fatigue that prevents you from being able to stand up in a shower? Ask for funds to purchase a shower bench. Indulge in a spa-like bathtub. Turn a devastating problem into an opportunity to indulge - make baths this ultimate experience if you cannot shower. Take the negative out of it and turn it into this incredibly positive experience on the other side of the coin.

Remember that you do not have to simply grin and bear everything. You are allowed to make decisions and take 'shortcuts' to help you enjoy every day life. There is adaptive equipment out there for a variety of activities. There is NO SHAME in taking the easy route when it comes to this kind of situation. When you are fighting 24/7 for the rest of your life, give yourself a break!

I suffered from severely excessive sweating from a really young age. We were never sure of what it was related to - medication, illness, hormones, thyroid - but it was very clear that it was a permanent problem. So, after years of putting up with saucer sweat stains and sticking to a wardrobe of all-black loose clothing, when my Ulcerative Colitis was wreaking all sorts of extra havoc, I sought out a plastic surgeon and asked what he could do about my excessive sweating. I eventually decided to undergo an elective procedure to burn off the sweat glands under my arms. It was a relatively simple procedure, with a much more significant recovery period than I had expected, but it was one of the only symptoms I could actually have some power over. At the time I had already had two major abdominal surgeries (to remove my large intestine, deal with a temporary ileostomy bag, then the reconnection and J-Pouch). I had been diagnosed with Crohn's Disease after all of that, and was facing a heart condition, a potential kidney issue, and a thyroid issue at the time. All I thought was that if I could make this ONE portion of my experience a little bit better, I am going to do so. Lucky for me, it worked wonders! 10 years later, I still have almost no symptoms of excessive sweating, at least not under my arms.

I have been having major issues with mobility related to my Ankylosing Spondylitis. I do everything I can to maintain flexibility, strength, and continue to be active. However, I cannot walk more than a certain distance. I love to enjoy things like fairs, spectator sport events, concerts, and farmer's markets, but it is detrimental to my health to attempt such large venues - so I use a wheelchair part-time. It saves my energy and fatigue and allows me to enjoy life. It does not mean that I have given up or that I am not active, it means I am giving myself a break; I am allowing myself the opportunity to enjoy parts of life I otherwise could not, by taking a type of 'shortcut'.

I know that, for me, I try not to complain to my physicians very often about the 'smaller' or 'expected' symptoms, because many of them cannot be helped. But if there are issues that can be improved, why not at least look into it?

I am happy to say that, with some discussion and some risks, some of my 'litte extras' have been improved. Anything to make life just a little bit easier.

The Lighter Side of: Frequent Bathroom Breaks

To be honest, I am not even sure how many times an 'average' person goes to the washroom.
I think when people are young and healthy, they may not even notice. Maybe three or four times for the basics and once or twice a day for the full digestion, but that is a guess. Then, women who have had children or who have gone through menopause would go more frequently from increased bladder output.

When I first became symptomatic with Ulcerative Colitis, I knew something was wrong. My digestion seemed to be on fast-forward, and sometimes nothing even appeared to be digested at all. Add in blood and a frequency of about 8x a day, and there was obviously something wrong.

After years of medications, a couple of surgeries, injections, infusions, a temporary ileostomy, and removal of my entire large intestine, I was diagnosed - additionally - with Crohn's Disease.
Through all of these years, my doctors kept a specific goal in mind.
We all wanted my system to slow down to 6 times a day.
That was our goal.

I am still not there yet.
My frequency is better, by all means, but definitely not at 6. It is more around the 10-12 mark - which is still a marked improvement from approximately 18x daily. I'll take it.

So after hearing this 'goal' for years and years and years, I actually thought that 6x daily was considered 'normal' or 'average'... but then I saw a comment on social media about a girl who has Ulcerative Colitis whose frequency was my ultimate goal.
To my surprise, she was terrified, upset, and nearly hysterical. She even stated how she did not know how she could go on with that kind of constant interruption.
Now there is no judgement here. Experiences are relative, so I am certain that - for her - 6x a day is horrendous and life-altering.
Though you can see why my views are a little misinformed.

So what happens when you spend that much time in the washroom?

Well, you can do a lot of different things. You can catch up on current events, browse through social media, text your friends, write blogs, read, or even watch a show!
Don't scrunch your face in disgust, we all do it!
Just remember to use Lysol wipes on your phone or tablet frequently!

The Lighter Side of frequent bathroom breaks is that there is a lot you can accomplish from the washroom. I write many of my blogs during one of my twelve visits a day. (Isn't that a nice visual?) Lol.
An added plus, usually experienced during the summer months, if you are using the washroom that often and wind up having to use outhouses or squatting in nature -> your quads get a fantastic workout!!

Remember that normal is relative to what you experience.
My normal is more than what many people consider 'average', but less than what others consider their norm.
If you can find a light side to a crappy situation, life will be much easier. It won't ever reduce your pain or cure your illness, but a positive outlook and a sense of humour will help your psychological well-being and offer some decent distraction from your woes.

It helps me!

The Lighter Side of: Migraines

Migraines are one of the worst and most all-encompassing episodes I have ever dealt with. If you catch them early enough, you can avoid the severe light-sensitivity, sound-sensitivity, stomach pain, vomiting, and persistent brain-crushing pain.
That is only if you have techniques to help ward off a full-blown episodes.

Although I deal with migraines fairly frequently, I am lucky -> I have responded well to a medication. When I take the dissolvable tablets, my migraine dulls to a simple throbbing within half an hour. When every second is excruciating, half an hour can feel like a lifetime.

The Lighter Side of Migraines is that the medication I take for them also helps me sleep.
Lately I have been dealing with some pretty significant insomnia, which is one of the biggest triggers for migraines. The less sleep I experience, the more frequent the migraines become.
It is vital for me to get a decent amount of proper sleep, which is really tough when you deal with painful conditions that make it difficult to find comfort, sleep disorders like sleep apnea and bouts of insomnia, and medication that can cause restless sleeping episodes.
Lucky for me, though, my migraine medication will almost always trigger a more restful sleep.

So I sit here, feeling my migraine become just a little bit worse by the minute, sitting in the dark, removing the squeaky toys away from my puppies, hoping to hang on long enough so that I can take my migraine medication right before bed.
Maybe I can get some good sleep and avoid another migraine tomorrow!

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: Nostalgia

While 'living in the past' can be quite unhealthy, even harmful, nostalgia is a powerful feeling, and something that powerful can become an intense motivator.

Getting stuck looking to the past can cause serious negative emotions. If we continuously grieve what we have lost or things we can no longer do, depression is often a by-product. How do we accept our current situation if we are always looking backwards?

One of the motivations, however, for getting better when one is ill is to get back to the person someone used to be. The idea of looking backwards to find motivation can be important.

It is vital to balance nostalgia with an understanding that we will never be exactly who we used to be. Looking to our past for activities we enjoy, for the level of strength or stamina we may need, and using our past to form a future to work towards, are all positive aspects of nostalgia.
We can use nostalgia to our advantage.

The Lighter Side of Nostalgia is that if we can use our memories to form tangible goals for our future, we get the best of both worlds. Using our positive experiences to create a plan - to work towards a skill or set of skills that can help us get through all of what illness can throw at us - this can make us better equipped to handle our pain. We remember how incredible we felt on certain vacations, or while we were engaged in a particular activity, perhaps when we were stronger, when we had a specific routine, and we form a similar plan that coincides with our current abilities, and bam - we are coping.

Instead of wallowing in what we have lost, take the memories and put it towards something for our future.

The Lighter Side of: Being Too Tired

Okay, sure, the vast majority of the time, being so tired that you are ready to fall asleep at any moment of the day can be pretty inconvenient.
Then, when it is combined with nightly bouts of insomnia, it can be infuriating.
You spend alllllllll day fighting to stay awake so that you can *hopefully* have a decent night's sleep, but when it is finally bedtime, you spend the evening staring at the ceiling.

So what should you do?
Do you give in to a lovely little cat-nap in the afternoon and risk an even more frustrating night of insomnia? Do you keep pumping yourself with sugar or caffeine to stay awake during the day? Do you try and do something active to keep your focus?

The Lighter Side of being too tired to do anything is that every single spot in the house becomes undeniably comfortable. You can curl up in a chair, on the couch, on the bed, on the floor, even in the washroom. It doesn't matter how uncomfortable a spot may seem, when you are that tired, everywhere is a comfy spot to sleep. You lose your picky ways and, if you allow it, you can let slumber lull you into its arms for a wonderfully deep, unplanned, nap.
Naps can be glorious.

The Lighter Side of: Wheelchairs in Elevators

Wheelchairs are intended to provide better accessibility for people who are paralyzed, ill, or who have mobility issues. It is meant to be a door-opener for people who, historically, were so often confined to their bedrooms.
Let's face it, though, wheelchairs can be annoying and can further illuminate the struggles these people deal with. While using a wheelchair, it becomes quite evident how inaccessible the bulk of our society can be.

There are some major perks and advantages, though, that we can focus on. I am particularly lucky because I only need a wheelchair part-time.

Elevators are one of them.
Sure, it is frustrating if elevators are broken down, running slowly, or way too busy. It's not like wheelchair users can quickly run into the stairwell. We rely on those elevators.

The Lighter Side of wheelchairs in elevators is that even if the elevator is jam packed like a can of sardines, the wheelchair forces others to give us that bubble of space. It's not as though we can shrink the wheelchair to fit more people in, and unless someone is bold enough (or stupid enough) to sit on the lap of a disabled stranger, wheelchairs provide a great little privacy bubble in overly packed elevators.

The Lighter Side of: Pushing Too Hard

Everyone experiences limitations.
Some limitations are physical, some are psychological, some limits are based in athletics, some in music, some in art, some in education. These are subjective, ever-changing, and highly personal. These limits and limitations are also reliant on our own goals and participation.
Apart from the very real limits of what a human being can actually do without the help of gadgets or gear, (like flying, reading minds, shooting lasers out of our eyes, etc...) most limits are temporary.
We can change them.
We can move them.
We have the power of conditioning ourselves to move our limits back and forth - as long as we are willing to make sacrifices and focus on our priorities.

I think most of us understand the consequences of pushing past our limits - in anything! If we are trying to do something active that we have never done, our muscles become sore. If we push past those limits, we may end up with a tear, a sprain, even a broken bone. Ligaments and tendons, torn muscles, these are all signs of pushing past physical limits.
There are others.
Like drinking so much alcohol that you wind up requiring emergency care to remove what has become poisonous and even life-threatening.
Overdoses.
Concussions.
Fainting.
Heat Exhaustion.
Severe Dehydration.
Vomiting.
Constipation.
Sunburns.
Organ Failure.

These are all examples of potential consequences of pushing past limits.
They do not happen to everyone, but they happen.

When you throw in a wrench: like an illness, it can be even more difficult to understand where those limits lie. Various types of chronic illness can even change one's own limitations on a daily basis.
I could manage to walk half a block today and not feel much pain or soreness tomorrow, but next week I could struggle to walk even ten steps without either vomiting or welling up with tears from the level of pain I experience.
It becomes more and more difficult to read when our bodies are signaling for us to stop. Or slow down. Or just take a break.

The Lighter Side of pushing too hard is that if you find the sweet spot, pushing too hard just a little bit becomes progress.

I am a full supporter in trying to be informed about your own limitations. This will mean trial and error. It means pushing too hard - pushing past your limits enough to suffer just a bit. I don't mean jumping in feet first when you haven't learned to swim. I just mean giving a little more, trying just that tiny bit harder, to see where your limits truly are. It means tuning into your own body and listening to every little twinge or change. Then, if you want to expand your limits, there are safe ways to work towards it - even with illness.
With yoga, I tend to try new poses or push just that tiny bit farther into a stretch. Sometimes I feel that exhilaration of positive progress, other times I feel the pang of severe nausea creeping in. It depends on the day. It depends on what I have had to eat. It depends on hundreds of different factors - but I keep trying.

With kayaking, I am a little more careful. It doesn't become about how far or how quickly I can paddle, it becomes about how far I can paddle and still manage to get back. I went for a paddle yesterday and it was one of the best days of paddling I have had in a long time. In fact, when I said the words out loud: "I think we should head back", I didn't actually feel as though I needed to leave. (Thank you, Adrenaline). My pain wasn't unbearable, I was not entirely exhausted, I did not feel as though I had reached my limit, but my subconscious sensed it. I had already pushed past my own limit, so I gave in to what my body was somehow signaling.

After I got home, I crashed hard. I couldn't eat. I could barely move. Not from muscle pain. Not even from joint pain. My internal organs were screaming. I experienced severe intestinal inflammation, a migraine, heartburn, stomach pain and cramping, and I could barely stay awake.
Had I pushed more - had I ignored that sudden urge to head back - it may have been a lot worse. There have been times in the past where my own internal system basically went on strike after I paddled too hard or for too long.
You wouldn't think that physical exertion could affect intestines or the stomach the way that it does. If I push too far past my limits - no matter if I am singing, playing piano, paddling, swimming, walking, biking, whatever - it feels like a sledgehammer to my gut and a knife in my back for hours or even days.
But yesterday, I pushed past my limit just that little tiny bit. Enough to feel accomplished and exhilarated, but not so much that I wound up in the ER. I crashed and had a hard time yesterday, but I was able to eat again today.
The lighter side of pushing a little bit too hard yesterday was that I had such a phenomenal experience that did not put me in the hospital.
That is an important distinction.
One that I am grateful for.
I got to paddle and it didn't feel like hell for long afterwards!

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: Nasty Side Effects

Adverse effects can be brutal - they can sometimes be worse than the symptoms of the disease.
When you have been on heavy-hitting medications like Prednisone, Methotrexate, Anti-TNF drugs, any anti-depressant or anti-psychotics, not to mention pain medications like gabapentin, you become accustomed to taking the good with the bad.

I have had the fortune of being on medications that had no noticeable adverse effects (like Ondansetron or Ursodiol), but I have also had the misfortune of being on medications with side effects that have lasted long after being removed off the medication itself (like Prednisone, Prochlorazine, Pentasa, and Salofalk). I mean years and years, not just a few days or weeks.
When the adverse effects are the run-of-the-mill lists - such as stomach pain, cramping, diarrhea, change in appetite, headache - we usually dismiss those side effects. Why? We dismiss them because these are on nearly every single medication leaflet you will ever see.
Here is the issue with dismissing it - these side effects can be life-altering. 'Changes in appetite' doesn't sound like a huge deal, especially when we see this risk so often and when you are looking at the side effects of Prednisone, appetite change doesn't seem that bad. However, 3 months into a medication and 50lbs heavier is not a minor side effect. It might be an expected effect, a common effect, and it is mostly just water weight that will fall off after the fact, but nothing about it is minor.

When you get into the more severe side effects, like hallucinations, hormonal changes, mood swings and depression, suicidal thoughts, tremors, vision changes, seizures, hair loss, blood clots, leukemia, stomach bleeds, vomiting, psychosis, navigating this dangerous side of medications can be tricky and frightening. Don't be fooled either, it may appear like these side effects are a risk only with pharmaceutical drugs, but adverse effects - even severe ones - can occur from anything that touches your system.

The Lighter Side of Adverse Effects is that, sometimes, the side effects can actually be positive, AND not all of the listed side effects on medication leaflets are actually scientifically proven side effects.
Many of the adverse effects listed on the leaflets that we receive are 'patient reported' effects - and companies are required to publish every formal complaint. For instance, 'gunshot wound' and 'motor vehicle accident' are listed as potential side effects of the Gardasil vaccine. Every medication will include all reported effects - whether it is valid or not. With words like 'incidence unknown', you can be fairly certain it is a patient reported effect. This doesn't mean they are all to be dismissed though, but when you read a leaflet that has every possible symptom ever recorded listed as a side effect, or when you read about side effects like the two examples listed, common sense should steer you to the correct information.
And if you DO want specifics of a particular side effect - ask a pharmacist! The incidence of any particular effect will be listed (0.1% of patients, 2% of patients, etc...), and it is their career to understand medications, their side effects, and contraindications.
The other lighter side of side effects is that these effects can sometimes be beneficial!
I have been on medications that have thickened my hair - and for that time, my hair was thick and luscious and had great volume. I was on another medication that cleared all of my skin issues and gave me that coveted 'glow' without any effort. I was able to comfortably and confidently go without any makeup at all for months! That was a nice perk, however short-lived (that medication also nearly drove me into the ground from constant vomiting, tremors, and severe weakness). I have been on a medication that have increased my energy as a side effect, another that reduced my migraines, and yet another that reduced my tachycardic heart rate to a more manageable level. These were all side effects; unintended results of taking one medication or another.

Side effects are a part of life. Anything and everything we ingest, digest, rub on our skin, drop in our eyes, diffuse in our homes, put in our water, has unintended effects, even we do not always notice them. The trick is to weed out the overwhelming amount of information produced in leaflets to what is clinically significant, while being aware of the additional possibilities, and then listen to your own body and focus your attention on what is changing. Then, as an added bonus, take stock of the side effects that have been positive or beneficial. These will ultimately be called 'Off-Label Indications' or 'Off-Label Uses' and can prove to be helpful to a variety of other patients - so notice them and report them if they are significant!

Side effects are not all bad.
Side effects are not all clinical.

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.