Sunday, October 18, 2015

I am

I have heard through the grapevine that some people in my life don't believe what I suffer. That's because I am strong. I have taken steps to keep my disease in check and hide it.

I say that I have Hashimoto's but it doesn't have me. In reality, however, it does have me and in the back of my mind, I know this. I have had to completely turn my life around and alter my perspective on what life means to me. To keep the destruction of my body subdued, I have had to make drastic changes that minimize inflammation and the reaction of my immune system.

Like all autoimmune diseases, Hashimoto's is invisible on the outside. Those who don't understand, as I didn't before this erupted in a big way, don't see the internal suffering. Some don't want to understand, and I can't make them. I can only help to try to remove your blinders. To the sympathetic who want to but can't truly, I thank you for the support and accommodations.

To keep myself functioning, I must live with restrictions in diet, activities, and environment. This has placed a burden on my family but on no one more so than myself. I feel frustrated with the new limits and feel alone much of the time because of this, more so than ever, so I stick to those I can rely on--a few close friends and my family.

I can't enjoy eating just anything at get-togethers and at restaurants and that leaves me feeling like an outsider. I can't risk contamination from iodine or gluten and am also sensitive to dairy, nightshades (including certain spices), and legumes. I risk a flare-up that can cause heart palpitations that make me anxious, sleepless, nauseated and dizzy; flare-ups that make me want to sleep for days, make me feel mentally stupid and unable to finish a sentence, and extreme depression (which is only made worse by medications). In either case, Hashimoto's can cause digestive troubles (which leads to nutrient deficiencies and problems that accompany those), muscle and joint pain, headaches, lung problems, and a feeling like a noose is closing on my throat so I can barely breathe or swallow. Even the sun becomes painful on my eyes in ways it never used to. And it's not only foods; chemicals that didn't bother me or were once only minor nuisances now are a problem, and stressing my body with physical activity past a certain threshold that never used to be an issue can now trigger flare-ups of some or all of the symptoms listed and then others that I haven't listed.

I'm still learning how to feel a part of events when I can no longer be as involved as other people. Believe me when I say that I want to feel like I belong and I want to participate. I've always been a little of a keep-to-myself person in certain circumstances but now I really feel it when participation can easily endanger my well-being. And attending functions can be disheartening. I have to eat separate meals prepared very carefully and, like a diabetic, I have special dietary needs that must be maintained if I don't want to crash. It is a challenge, but one I am slowly adapting to.

I'm still learning to cope, but I've only been dealing with this for about seven months. It was probably smoldering long before that--I was aware of something going on but couldn't identify it. It wasn't until about seven months ago that this erupted in a big way. If not for my own efforts and functional medicine (since conventional (aka corporate) medicine failed me), I would not be where I am, possibly even dead. (Only a few people know how extreme my symptoms were and how I struggled for answers and healing while coping with maintaining regular life.) As it is, I now can be assured that I will not live as long as I might without this disease; but I'm damned well going to make the most of what I have and that involves doing whatever it takes to be at my best, no matter the sacrifice. I have a family that needs me and I am going to enjoy what life I have doing whatever I can to enjoy myself within the tolerances of this disease.

I've known women battling breast cancer and ovarian cancer who did not give up what enjoyment they can get out of life, in spite of the sacrifices they've had to make. I am also going to LIVE to the most that I can, but I can't risk making this worse--one AID often leads to another, because they really aren't separate but are all malfunctions of the immune system. The key I've discovered in my vast research is calming the immune system so it doesn't fire up and begin attacking other parts of the body. That means staying within boundaries.

I am sorry that it may mean sacrificing travel, but it is much easier to maintain my health when I can rely on being close to home. If that offends some people, so be it. They can live their lives however they choose. I am living mine how I choose. I choose to live with the best health and joy that I can maintain.

In light of all that, I am doing my best to feel more comfortable in those settings where others think nothing of their health (or my invisible disease) while I must give everything careful consideration. My life is now a balancing act that sometimes feels like the heaviest burden in the world.

Already in the nearly three months since learning that I have this, I have grown more comfortable with this new reality and the lifestyle to manage this disease. But the upcoming holidays will be my first experience since this all came about. This is still a period of adjustment for me. I ask that people in my life bear with me as I try to find solid ground from the shifting sands beneath my feet and please don't assume anything about this disease. Nothing is more frustrating to me, except to see others suffering health problems for which they are unwilling to make the changes they know are necessary, especially in light of all the work I have done and the sacrifices I have made to improve my health. I am doing all I can to endure and to make my life livable with great sacrifices that only other sufferers of invisible diseases can truly appreciate. This has shown me how strong I really am inside and I have found a calm in the inevitability that has helped me to cope.

I don't want pity, simply understanding.

Life is full of challenges. It's how we cope with them that defines us. Who are you?

Edit: I just found this on Facebook and think that it sums up all I just said very well:


  1. I can't begin to imagine the effort that must go into living with your condition. I feel fortunate not to have so many restrictions placed on my diet just so I can get through a day without feeling like crap. However, I have recently started on my own battle.

    I am morbidly obese, and a month ago I found out my youngest brother was possibly starting to develop complications as a result of his weight. That along with the death of someone I knew online who was close to my age and a regular Coke drinker prompted me to start doing something about my own weight. It's clearly not the same thing, but it is definitely a battle against deeply ingrained habits.

    I started with giving up Coke and haven't drunk any for about a month now. After the first week of not drinking Coke, I turned my focus toward eating less and moving toward a healthier diet. As far as that's concerned, no one would call my diet healthy at this point, but for now I am managing to eat less and not feel hungry doing it.

    A lack of exercise isn't my main issue as I walk a lot compared to those who drive. I'm vision impaired, so my only options are walk, public transport, or taxi. Taxis are too expensive and public transport doesn't help with travel within the local area, so I walk. I can easily walk up to 2 or 3 kilometers (almost 2 miles) each day just to get where I want to go. On top of that, I now walk my dog at least once a day when it's not raining, usually twice a day. My iPhone 6+ reports an average distance of about 7km/day (about 4 miles).

    At the moment, I am waiting to receive a set of bariatric scales I ordered online so I can establish my starting point and start quantifying any possible improvements.

    Anyway, you're not alone. Although, I imagine your journey is a lot tougher than mine. If I eat too much my but just jiggles a bit more, but if you eat the wrong thing you feel like crap while your own body attacks itself.

    1. I had no idea that you had weight issues, but we never do until someone opens up, especially in the online world. I wish you all the best in your journey. It won't be easy, but I'm sure you can do it.

      Your words mean a lot. Thank you, Paul.

    2. I truly appreciate your encouragement.

      Honestly, I've been told for years to lose some weight, but I've always taken a laissez faire attitude toward my weight. The thing that really made me sit up and pay attention, besides my brother's issues and the death of someone who regularly drank Coke, was the fact that I could no longer be measured by the bathroom scales here. Now, that's not to say I just kept doing what I wanted while watching my weight go up, I just never bothered checking it that often because someone else had to read the display for me. The bariatric scales I found include a speech synthesizer, so I'll have no more excuses to ignore my weight.

      I think it's mainly a combination of comfort eating, boredom eating, having been a regular Coke drinker for many years, and having dessert every night (until recently) for as long as I can remember, that led me to where I am today.

      I have never been shown that healthy food can taste good (I still don't like it). Growing up, vegetables and salads at dinner were just an unpleasantness I had to endure before I got dessert. heh My youngest brother (the one I mentioned earlier) actually hid his vegetables under a tea towel under the table growing up and for a while mum thought he was eating his vegetables like a good little boy.

      I think the messages that can help people like myself are that getting exercise isn't hard and time wasting (I already know this for the most part), and that healthy food can taste good and doesn't need to be an endless parade of boring salads (mum's idea of healthy eating). Talking up the risks of being overweight just doesn't mean anything, we can always say, "That won't happen to me."

    3. I couldn't imagine not eating vegetables, because we always had veggie trays with ranch dip at family functions and we were so poor that if we didn't eat veggies, we hardly ate anything. Raw potatoes, carrots, radishes, cucumbers, and cauliflower were available to munch on (along with the bread and crackers). My daughters are another matter, however. I keep trying to get them to try veggies and fruits. They're getting better, but I think seeing what I eat is slowly sinking in to become normal for them. As a parent, we unintentionally model behaviors for our kids, good and bad. I always tell them that they can eat any fruits or veggies at any time. I never limit those...only the grains and sweets.

      I can be picky too but not like I used to be. It was hard, I'll admit, to go on a strict elimination diet. I had to force myself to try new foods. While I tend to fall back on a handful of those I like to eat mostly the same things every day, those meals are ones that I've learned are good taste combinations (to me) and nutrients dense. Greens are the hardest to tolerate tastewise and the most necessary veggies. I've had to get creative, but...writer. I'm no chef but you'll find on this blog a couple of the salads that I've discovered I can tolerate and even enjoy regularly. The big non-secret secret--onions make everything better!

      It doesn't have to be "hard" to change. You just have to change your mind about how you see things. I have the incentive of the bad effects if I don't stick to it--trust me, there are times when I want to say f*ck it. But too many people depend on me to let myself fall apart again. My kids are what got me through the worst of this and still do.

      Find your motivation and visualize what you want in a month, six months, a year, etc. Then make it happen. It's easy for me to say at this point, but once you start making little changes towards improvement, they will snowball. It gets easier. And remember that sugar, starches, grains (which are really just as bad or worse than sugar), etc. are like heroine--the brain is actually addicted to these substances. Once I told that to a friend, it was easy for her to give them up. Think of them as nasty drugs and how they're damaging your body and really make that association stick in your mind. It will be easier to avoid them. My other suggestion would be to stick to the outside of the grocery store (but avoid the bakery--ours is located just past the fresh produce). That's where all the whole foods are.

      I would start with reading Wheat Belly and Grain Brain. Those two books make a HUGE difference for me for start on the path to recovering my health.


      Sorry. Just want to help. Take my advice or leave it. You've always been a pretty independent thinker.

    4. As far as vegetables go, I can tolerate them a lot more in something like satay chicken or a stew. I can not stand pumpkin or peas, they are vegetables that bring me pretty close to gagging. Now, Brussels sprouts, those do make me gag.

      When it comes to specific food restrictions, my current approach is to choose a "healthier" option if available (e.g. wholemeal instead of white bread), or reduce the size of what I have (e.g. 2 squares of Lindt chocolate instead of eating the whole block at once). The only thing I've decided to completely eliminate for now is Coke. That was easy to do because I had an alternative that was just as refreshing, if not more so, with no added sugar that I could turn to. Peppermint or spearmint ice water. I use peppermint for refreshment, and spearmint when I crave something sweeter. I drink plain water too, but I don't find that as refreshing as water with mint.

      Wish I could say the supermarket advice was helpful, but since I can't afford to live away from home, I'm not the one who does the shopping, or even most of the food preparation. I have the highest control over breakfast and lunch. For breakfast I've been having supposedly whole grain cereal with almond milk (that's better than a cheese and bacon roll with a bakery treat of some kind), and for lunch I most often have a cheese and bacon roll minus the bakery treat. And rarely do I have dessert now (I used to go buy an ice cream every night). I need to get healthier at lunch time, but for now my main focus is on getting used to eating less.

      Most of the hard work in changing the way I eat is replacing bad habits with good. Well, that and avoiding the temptation of mum's stockpile of sweet biscuits she insists that she must keep around. She's often complained about having too much takeaway and even tried to limit it a couple of times, but she has to have lots of temptations sitting in the pantry? lol As we speak, there are 3 or 4 packets of TimTams and 2 packets of assorted cream biscuits sitting in the pantry, waiting to be opened. An open packet is like a siren song to me.

      A little side benefit I've noticed with all my recent efforts is that my bank account is getting fatter. I'm saving about $200 *PER WEEK* by not buying Coke 3 times a day, bakery treats twice a day, and dessert every night. I've been saving so much money that I may just have to increase the amount I invest each week so I'm not holding too much of my net worth in cash. Speaking of which, I think I'll have to examine that possibility after lunch.

    5. I know the hard side of temptation. Besides keeping my family healthy, it's why I don't buy treats for the family. I could never resist. Luckily, I do the shopping.

      I wish I could say we save money on groceries, but it's not cheap to have to buy fresh food two to three times a week. It's unfortunate that junk food is cheaper than real food.

  2. Hi Melanie, I wish you strength and courage with your medical journey. I've noticed your posts of late and was wondering what condition you were dealing with. Now I know and commend you for taking the action needed to live the best life for your family and yourself.