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.
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