Sunday, August 18, 2013

What If I'm Just Lazy?

I don’t like to admit it, but every now and then thoughts about whether I’m just lazy creep in. 

Being sick for an extended period of time can make it hard to remember what being healthy feels like.  As the memories of having normal amounts of energy fade, I sometimes find myself doubting what my body is telling me.  I feel like I need to rest after doing little or even nothing, yet I question if I am being too careful.  Having forgotten what it feels like to not feel so exhausted, I wonder if I only imagined feeling normal. 

These thoughts eat at me, as I was always highly motivated and active.  I often end up pushing myself and crashing hard after letting these thoughts get a hold of me.  That’s one way to banish them.

I was lucky enough to have three really good days last month.  I don’t think I’ve had days that good since getting sick.  For those few days I almost felt normal and it was amazing. 

I have been in a constant fog since I’ve been sick.  I always feel like I’m half asleep or dreaming.  Then one day last month, I actually felt awake.  I had forgotten what that was like.  And by the next night, brushing my teeth and flossing felt like the simple tasks they are, rather than an Olympic feat.  I was ecstatic. 

I felt ready to do anything.  And of course I completely overdid it.  It just felt so great to be able to do things without that heavy feeling like someone turned up the gravity. 

Those few days reminded me of what I already knew, but was having trouble remembering.  If I could do more without making myself sicker, I would.  I’m not lazy.  Once I actually have energy, I have trouble stopping myself from doing everything I can.

Do you struggle with keeping such thoughts from creeping in?

Monday, March 4, 2013

A Difference in Treatment

When I wished more doctors believed it wasn’t all in my head, I didn’t want an avalanche of health problems; I just wanted nice black and white tests for the issues I already had. I guess I should have been more specific.

I was diagnosed with asthma about a year ago. I still feel out of place when the doctor who diagnosed me explains how important it is that I do this or that so I don’t end up with a life threatening problem. He warned me that I could end up with pneumonia, but I didn’t even give it a second thought. I’m clearly not used to having anything that is taken seriously.

In October I developed a fever—the first one I’ve had since right before I got sick 14 years ago. I also had a sore throat and a cough, but only the fever concerned me because I get the other symptoms often.

Luckily, I finally found a good PCP just months before. Turns out I had pneumonia. I was sent to the emergency room, where I was surprised to be treated like someone who was actually sick. A couple days later I was sent back because my potassium level had become dangerously low.

The pneumonia cleared a month later, but my asthma continued to flare and I was unable to gain back the weight I had lost while I was sick. Since I was underweight before getting pneumonia, I was put on medication to help me gain the weight back. I was also put on steroids for the asthma symptoms.

We managed to control my asthma, but I was still dealing with significantly worse than usual weakness, nausea, tachycardia, pain, and exhaustion. I couldn’t even make myself a sandwich.

Although I had spent much of my time before coming down with pneumonia lying down because of POTS symptoms, this was different. Before I could usually force myself to get up if necessary and push through the symptoms knowing I would pay for it later. I lost this ability to push through when I got the pneumonia and it wasn’t coming back.

I always appreciated not being completely bedbound and at least being able to do simple tasks if I needed to. I did not like this new feeling of complete helplessness.

I was able to gain back all the weight I lost and more, but it came on so quickly that they suspected something else was going on. My labs showed my cortisol level was extremely low and further testing showed adrenal insufficiency. I am waiting on more testing to figure out the exact cause.

Meanwhile, I’ve been put on hydrocortisone, which has finally got me feeling like I was before I came down with pneumonia. It was nice to hear that if I took this medication, I would feel better, rather than “we’ll give this a shot and see if it helps.” And it was certainly a relief to take a medication and not only have it work, but not have any crazy side effects.

Although it certainly wasn’t pleasant to having what felt like a bad flare for months straight, I will say that the difference in treatment was amazing.  

I’ve been treated with much more compassion. I have seen much less of that look doctors give you as soon as you mention certain illnesses, such as fibro. In fact, I only received that look once in the past few months and it was because I mentioned all of my illnesses during the trip to the emergency room for potassium. During the previous trip I was able to get away with only mentioning asthma, and I was treated better and faster. 

Have you experienced a significant difference in treatment depending on what illnesses you mention?

Saturday, September 15, 2012

30 Things Meme

Since it is National Invisible Chronic Illness Awareness Week, I have filled out the 30 Things Meme.

30 Things About My Invisible Illness You May Not Know

  1. The illness I live with is: ME/CFS, Fibro, POTS…just to name a few
  2. I was diagnosed with it in the year:  2002
  3. But I had symptoms since:  1998 (age 13)
  4. The biggest adjustment I’ve had to make is:  having to ration the little energy I have.
  5. Most people assume:  my illness is something I’ll “get over” (I wish!)
  6. The hardest part about mornings is:  waking up
  7. My favorite medical TV show is:  Grey’s Anatomy
  8. A gadget I couldn’t live without is:  my laptop (my connection to the outside world)
  9. The hardest part about nights is:  not even being able to escape my exhaustion in my dreams
  10. Each day I take 14 pills & vitamins. 
  11. Regarding alternative treatments I:  stick with those recommended by a doctor I trust and have found a few helpful ones.
  12. If I had to choose between an invisible illness or visible I would choose:  visible…of course the grass is always greener, so I might have answered differently if I had a visible illness.
  13. Regarding working and career:  I wish I was well enough to have really started a career.
  14. People would be surprised to know:  how many hours a day I can sleep.
  15. The hardest thing to accept about my new reality has been:  my limits
  16. Something I never thought I could do with my illness that I did was:  graduate college
  17. The commercials about my illness:  are nonexistent 
  18. Something I really miss doing since I was diagnosed is:  being physically active.  I used to be very active and loved going on hikes and long walks to explore new places.
  19. It was really hard to have to give up:  gluten
  20. A new hobby I have taken up since my diagnosis is:  blogging
  21. If I could have one day of feeling normal again I would:  spend the day having fun with my nieces and nephews
  22. My illness has taught me:  to appreciate the little things
  23. Want to know a secret? One thing people say that gets under my skin is:  you really need to exercise/get out more (my body thinks showering is running a marathon—so I think that is enough “exercise” at this point, and as far as going out, I am probably still recovering from my last doctor’s appointment)
  24. But I love it when people:  actually try to learn about my illnesses
  25. My favorite motto, scripture, quote that gets me through tough times is:  “When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.” – Harriet Beecher Stowe
  26. When someone is diagnosed I’d like to tell them:  You are not alone.
  27. Something that has surprised me about living with an illness is:  how much energy things like taking a shower and brushing teeth take.
  28. The nicest thing someone did for me when I wasn’t feeling well was:  I would have to say a tie between making/giving me gluten free baked goods and cleaning for me.
  29. I’m involved with Invisible Illness Week because:  I want to raise awareness.
  30. The fact that you read this list makes me feel:  happy

Thursday, August 23, 2012

Using Humor to Cope

“I love people who make me laugh. I honestly think it's the thing I like most, to laugh. It cures a multitude of ills. It's probably the most important thing in a person.”
-Audrey Hepburn

Humor helps me cope more than anything else.  It is really what keeps me sane, whether it is finding the humor in a situation, joking around, or just watching something funny.

I honestly don’t know how I’d handle being chronically ill if I couldn’t find the humor in almost any situation.  I laugh about how ridiculous things are often (which has led some to think I am crazy…but hey, their loss for not seeing the humor in the situation).  It’s not that I don’t take things seriously, but being able to laugh at things helps make them more bearable.

Take, for instance, my clumsiness.  Sure I could just get frustrated at myself for constantly tripping, bumping into things, burning myself, dropping things, etc., but how would that help?  Instead, as long as I am not seriously injured, I laugh at how silly I must have looked.  I laugh at how crazy it is that I managed to injure myself on something I knew was there.  I laugh at the fact that it is the umpteenth time I have made the same mistake.

I laugh at the things I do because of brain fog--taking the time to actually make a grocery list but then forgetting it; turning on the electric kettle (luckily with auto shut-off) and forgetting to make the tea for so long that the water is cold and has to be reheated; putting food in the toaster or microwave, but forgetting to turn it on and wondering why it is taking so long; or talking about how we always forget to take the trash out on garbage night, then realizing the next morning that last night was garbage night but even talking about it didn’t remind me.

Another opportunity to laugh is the constant game of charades I play with anyone who attempts to communicate with me.  I am always making crazy hand gestures trying to portray the words I can’t remember, while saying something that doesn’t help at all.

Names are the worst.  “You know, so and so who was in that movie with what’s his name.”  I also laugh when my husband guesses right the first time from such a vague description because he has become so used to me doing this.  Then I laugh at the fact that most of our conversations are about movies or TV shows, since I don’t get out much and all.

Having family and friends who share my sense of humor makes it even easier to find something to laugh about.  All it takes is a glance, a word, or even a picture and I can be cracking up because we know how to make each other laugh.  I can be having the worst day or week and that one thing can have me laughing so hard it hurts, and suddenly things don’t seem so bad.

Where do you find humor?

Thursday, August 16, 2012

Dealing with Doctors

One of the hardest things about having a commonly misunderstood illness is dealing with doctors.  Having doctor after doctor either not believe you or give up on you can be demoralizing.  Just thinking about seeing a new doctor after so many bad experiences can make me uneasy.

When it comes to doctors not getting it, I try to remind myself that it isn’t personal, even though it can certainly feel that way. These types of illnesses aren’t usually covered in medical school. It certainly isn’t our fault. It may not even be their fault, as they are just practicing how they learned (although it certainly wouldn’t hurt if some of them were a little more compassionate).

Finding doctors who are recommended for those with our conditions helps, but is not always possible.  I have found that this is often the case when trying to find a primary care physician.  There aren’t any recommended ones in my area.  I have tried all the lists and asked around, but without luck.  And from what I have heard from others with these illnesses, it seems that finding good primary care doctors is especially difficult.

Since I haven’t been able to get a recommendation, every time I see a new primary care physician, I feel like I am going in blind.  I have no idea what to expect, and with all my bad experiences, I have had to be creative in my approach.

Of course, I can call the office to get a feel for new doctor and come prepared with a list of questions and the binder that contains my medical records.  I can also hand the doctor records from a psychiatrist showing I am not depressed or test results showing abnormalities and impairments, but it’s not always enough. 

I have been to doctors who say they have treated other patients with my illnesses, but they turn out to only be familiar with the misconceptions. I have also had more doctors than not disagree with my psychiatrist and write off test results. 

So when I’m seeing a new doctor and have no idea what to expect, I often place bets on what I think a doctor may say. Not for money of course…I either keep the bet to myself or tell my husband or friends who understand. 

The bets go something like this:  I will bet a doctor will either tell me to exercise or see a psychiatrist--double points for both. It helps motivate me to keep trying, and at least I can laugh it off if they end up telling me things that I know aren't the case or won’t help.  If I “lose” the bet, then it’s a pleasant surprise because that means I found a doctor who didn't make the typical assumptions. 

Sometimes my bets are outlandish, but at least if I win the bet I will have a funny story to share. 

Recently, my toe wouldn't stop bleeding for weeks and I had no idea why.  I don’t recall injuring it, but I often don’t realize or remember when I injure myself.  I used the opportunity to see if I could find a new primary doctor.  I figured they couldn't possibly see blood and puss and think it was all in my head, but I made the bet anyway...told my husband on the way there “watch this doctor tell me this is all in my head.” 

Sure enough, nothing was wrong according to the new doctor.  If I had not called it, I probably would have cried out of frustration as this doctor said she didn't see the problem.  Instead I tried to point out that there was clearly fresh blood and that it had been going on for over a week at that point.  But when the doctor followed with scare tactics, I simply went along with her previous statement, knowing I would have a laugh with my husband about it as soon as I left.  Of course I got a second opinion and didn't leave my “imaginary” bleeding to worsen.

The main things I keep in mind when seeing a new doctor for the first time is not to take things personally, however hurtful they may be, and to try and remember that if the doctor was particularly hurtful or off, I will probably have a good laugh afterwards.

What do you find helpful when dealing with new doctors?

Wednesday, August 8, 2012

Being Sick Can Be a Full-time Job

I haven’t had the chance to write any posts for quite awhile.  Sometimes being sick can be a full-time job, and this year has been just that.

You know you have a lot of medical appointments when you have trouble scheduling new ones because your calendar is full of other appointments. I also had my social security disability hearing added to the mix, and all that went along with that.  And of course, with all that was going on, if I wasn’t at an appointment, I was recovering from one or preparing for another.

Being chronically ill and out of work, we often hear comments about lying on the couch all day.  Sometimes others say they are jealous, sometimes jokingly.  What they don’t realize is that we spend our time surviving, not relaxing and enjoying ourselves. 

Sure we try and enjoy what we can.  If we don’t, we might sink into depression or lose our minds.  We may literally schedule time to relax, because otherwise the buildup of tension can cause symptoms to flare up.  Still, most of our time is spent just trying to get through the day.

I kept track of how much time I was spending doing what in preparation for my disability hearing.   The amount of time spent doing things such as attempting to get out of bed and taking medications amazed me. 

Often, it takes up to two hours for me to manage to get out of bed, between being unable to stay awake, even after a full night’s sleep, and having to proceed slowly due to POTS symptoms.  Then I need to take my medications—lots of medications. 

Eating is exhausting.  Brushing my teeth is exhausting.  Taking a shower feels like an Olympic feat.  All of these things require lying down afterwards, adding to the amount of time it takes to do these seemingly simple tasks.

So, yes, we may spend much of our day lying in bed or on the couch…because we are recovering from those simple things that healthy people do without a second thought.  Needing to lie down to recover from these things is not fun and is often frustrating.

If even I didn’t realize how much time is spent preparing for, doing, and recovering from simple tasks, it is no wonder that healthy individuals have trouble understanding it.

What do you wish others could understand about living with chronic illness?

Wednesday, December 14, 2011

When Your Body Cries Wolf

Do you ever feel like your body is constantly crying wolf?  Do you think that you may mistakenly write off a symptom as part of your illness because of so many false alarms?

I’m sure most of you have that crazy symptom that scares you. At first, every new symptom may seem terribly alarming and we may go straight to the doctor or hospital.

For me, it seemed that after going through every diagnostic test available, the doctors would always come up with one of the following conclusions, depending on their familiarity with me and my illnesses:

a) Nothing is wrong. Come back if it fails to improve or gets worse.
b) We cannot find anything, or the results are inconclusive. Come back if it fails to improve or gets worse.
c) It is just another symptom of your ME, FM, etc.
Eventually, we may see the pattern and grow sick of what may seem like a waste of time, energy, and medical expenses for the same conclusions every time.

In my case, I developed somewhat of an invincibility complex.  It was not the typical invincibility complex—I never drove recklessly or participated in particularly risky activities. But after always being told that everything is nothing to worry about and having had every test imaginable, I hadn’t thought I was in any real danger health-wise. 

I recently had a wake up call. One morning I woke up extremely dizzy, weak, and numb. When I finally managed to make it to the bathroom, my vision went blurry and my hearing went. Then it felt like my body turned to gelatin and I lost all strength and fell, unable to catch myself.

I was scared because that was the first time anything quite like it had happened to me. Usually if I fall it is because I lost my balance or tripped. Whenever I have started to fall because of weakness, I’ve always been able to grab onto something or catch myself before I hit the floor.

Although I’m fine now, it served as a reminder that we never know when something serious may come along. As the symptoms accumulated that morning, I didn’t think much of it. I pretty much ignored everything until I was actually on the floor and couldn’t move.

I used to think that my gut instinct would let me know if my body was just “crying wolf” or was in actual distress. Now I am not so sure. I guess all we can do is see a doctor when new concerning symptoms come up, rather than assuming it is just nothing as usual.

Do you get so tired of every symptom just being another part of your illness that you start to ignore new symptoms or feel that nothing is ever serious?