How I feel about my body is a bit of a conundrum. My body is fighting my own organs but refuses to fight ACTUAL invading infections and what not. I am proud of how I look and I am happy in my own skin (so the saying goes), however, uncomfortable. I have several sources of pain which will never be fully healed, so I will continue living with pain each day for the rest of my life.
Aside from the love/hate relationship with the body that I have, my worst enemy is:
Doubt
Doubt shows up in many different categories and plagues every individual in some way, but it is particularly rampant in those with chronic illness:
1. Am I doing the right thing for my body?
- am I taking the right medications for my illnesses?
- am I pushing too hard?
- am I adding enough relaxing techniques?
- should I be trying naturopathic therapies again?
- am I supposed to increase my medication to a point where there is NO pain, even for a few hours?
- am I eating what I should be eating?
The truth of the matter is that I have tried to do literally everything that has ever been suggested to me by other people with these illnesses along with anyone in the medical field.. I am currently on what we believe to be the best balance for my body in particular.
2. When I am in a full-blown episode, when do I seek medical attention in an emergency room?
- is this flare something that will subside on its own?
- will I feel like I have wasted the time of the emergency room personnel?
- will I be lectured or scolded for going into the ER if they can't find anything that needs immediate care?
- should I drive myself? CAN I drive myself? What time is it - should I call a friend to come with me?
- can I bear the pain and just sleep it off in my own, amazingly comfortable, bed?
- If I do go into the ER, do I take pain and anti-nausea medications beforehand, or should I avoid taking them so that I can efficiently point out where the pain is located and how truly severe it is?
- will the nurses and doctors be decent?
- will anyone believe me?
- will they look at my chart or just jump right in?
- will they be able to do anything more for me than what I can do at home?
- do I call an ambulance or just try to get to the hospital myself?
These are some of the questions and doubts that I have. There are LOTS of times that going to the emergency room ends up being MORE stressful. There are times when doctors will believe that if I look okay then I must be healthy.
DOUBT.
It's been so awful sometimes (like when the ER doc at Foothills Medical Centre told me that I should never go to the ER and that I shouldn't even HAVE a family doctor because my case is so complicated) that there have been several episodes where I SHOULD have gone to the ER but didn't. All because I am afraid to be treated poorly. That I would rather puke my guts out nonstop for 8 hours rather than to brave an emergency room.. Where I have to fight and explain and fill out forms and wait and wait and wait... Another one made me wait 11 and a half hours to see a specialist when I refused his recommendation - which was to go home and eat probiotic yogurt. Not only are probiotics mainly absorbed in the large intestine (which I do not have), but once I got to see the specialist on call, he diagnosed a very large ulcer in my esophagus that was caused by the antibiotic I was taking at the time. This was a COMMON possible side effect of the drug.
3. Am I imagining any of this pain?
- has this pain ALWAYS been there or is it, in fact, new pain?
- is it as bad as it seems? Does it seem worse because of something else? Is this a pain that I have had before and do I remember what caused it and how it was resolved?
These are easy answers - at least until Doubt surfaces. Trust me on this - I only go to the ER if it is absolutely necessary. I don't want to be there, I hate IVs, I don't always get a bed anyways, and it will be upwards of 7 hours or more hanging out at the hospital being probed and poked and prodded and scanned... With only one main patient washroom, no tv, no cell reception, and (worst of all) sometimes no answers or insights by the end of the visit.
4. Will the doctors even believe me?
Sometimes, because I don't always LOOK sick, it's difficult to get across how ill I actually feel; how ill I actually am. Now, over the last few years, there is less doubt in the medical community about how sick I really am... This is mostly due to the lengthy list of medications, allergic reactions, and diagnosed illness. If there is even the slightest bit of doubt from a physician, I always feel like simply going home to try and ride it out. Do you have any idea how humiliating it is to be doubted? For someone to doubt anything that I have been through? For someone to doubt my medical records, my pain scale rating - doubt that I should even be there at all? It is utter humiliation to have someone actually believe that I might be faking it.
5. Are the treatments working?
6. Will I ever have significant relief?
7. Do I trust my doctors?
- yes. I really do.
8. Am I doing anything that could jeopardize my health significantly? Is there any chance that I could be causing this myself?
Trust me - I have investigated and researched - there is nothing that anyone could have really done to cause ALL of this. I always try and make sure that I do NOT do anything that could be seriously dangerous or that could cause my body to deteriorate faster.
9. Which symptoms do I mention? How many symptoms are new? What changes have I made in the last few days that could have triggered this episode? Out of all of the pains that I have, how many should I mention - how many are relevant to one specific visit?
10. Am I being punished for not being a good enough person? Is there anyone out there, who I may have wronged, who is thinking to themselves that I deserve to be this sick? Is there actually a reason for all of this - am I supposed to learn something from this experience?
OH MY GOSH! Is there someone who has a VOODOO DOLL of me and is putting needles into the doll in every possible space?!?!? That would make sense as to why my hips always feel as though there are steel rods going through my SI joints and shoulder blades!!
Or maybe they have my picture posted onto a dart board!! Hmmmmm
11. Will I ever be able to live a relatively normal life? Will my quality of life always be as good as it is now, despite the complications? Will I be able to have real and genuine loving relationships with friends and family and my significant other?
Then here comes the last question.
The last seed of doubt. The most important question - the one where doubt can prove to be dangerous. The question that most people often ignore.
Can I live with this severity of pain every single day... For the rest of my life?? And how long do I have?
Doubt.
It creeps in.
It follows you everywhere you go, making you second guess every decision, every diagnosis, test, doctor, medication... It makes you second guess who you are, where your priorities lie, and your resolve. It makes you second guess the kind of life that you deserve.
Yes. Doubt. It creeps in. But I am determined enough not to let it take over. I will continue to fight every day for the rest of my life.
Doubt is the enemy.