Bloody Lymey

A Blog About Living with Lyme Disease


on April 2, 2016

I’ve been going through a medical thing now that doesn’t have to do with Lyme, that I know of, but the fatigue is equally debilitating and oh, so familiar.

(You can skip this part – just boring details about why I feel the way I do ) My thyroid has been off – and I have labs to support this.  My doctor referred me to an endocrinologist which they don’t seem to bother much with for hypothyroidism.    They did an MRI on my pituitary, too.   I’m 44 and I’ve started having premenopausal symptoms – hot flashes, night sweats, erratic monthlies…..

In the end of February I had my appendix out.  It seemed an ordinary but painful situation, exactly as it has been recounted to me through others before me.  Excruciating pain, lower right abdomen.  In I went.  Out it came.

I saw the surgeon for follow-up, expecting him to inspect my incision, smile, pat me on the head and wish me luck.  He sounded expectedly light, asking how I felt and whatnot.  He looked at the incision and nodded, saying it looked like it was healing nicely.  I nodded, too, tugging my shirt back down over my big belly.

He sat down and frowned.  “Let’s talk pathology now.”

That was a strange word.  Pathology.  I heard the c-word and tuned out.  My mouth opened and I was staring.  Cancer.  His lips were still moving and he was nodding emphatically.

“…They removed the cancer along with your appendix and there is no reason to think it had spread……”

I asked about the appendix being “perforated.”  That’s what the report said.  He smiled and shook his head.  “You’re not at risk,” he smiled reassuringly.  “No need to follow up with anything.”

But follow up I did.  My PCP referred me to an oncologist to be sure, adding “I’m very certain it’s all out, but I’d rather hear it from oncology.”  She said the type of tumor I had, a carcinoid, sometimes disrupt endocrine systems and she wondered  if I might start feeling better.  I read more about it.  “Carcinoid syndrome” is what it’s called.  Fatigue.  Bloating.  Erratic BM’s.  Flushing — flushing?!  My God, my face keeps turning beet red, even when I don’t feel hot or like I’m having a flash. People have commented on it , and during those times I would have been none the wiser.  It all made sense.

It’s been over a month and I’m not feeling better.  The oncologist was optimistic, but is going to conduct scans this fall and follow up with me, then track me.  The place is affiliated with Dana Farber in Boston.  Certainly trustworthy .

OK – Back to the fatigue!

I could sleep 10 hours at night and need a nap in the late afternoon/early evening.   Sleeping does not refresh me for the most part; it simply feels like a respite from being tired.

I read something about Chronic Fatigue where sufferers describe how it feels.  One lady wrote something about how it feels like you’re a cell phone on 0% and you plug yourself in overnight to recharge and you’re surprised to wake up and find you’re only up to 9% and can’t get it charged anymore than that.  You spend the day trying to budget this 9%.

Yes.  That’s exactly it.  And it’s a lot like the “spoon theory” that I refer to a lot . If you’re not familiar then here:  spoon theory

I feel as though I’m trying to constantly budget that 9% charge or those 15 spoons.  Lately going to work feels like it is more than 5 spoons, though.  It feels like 12 and I struggle to budget the last three. So …. I buy us takeout instead of grocery shopping or cooking dinner.  Then I lay down.  Sometimes I sleep.  Sometimes I get another spoon or two out of laying still and watching TV.   A phone call from a friend may go unanswered because even if I enjoy talking to them it feels like a spoon is spent and I may need it to run a load of laundry or help my son with a problem he’s having.

I had someone email me if I could attend her baby shower because I didn’t RSVP. I didn’t RSVP because it’s hard to make plans,  and I rationalized that after more time passed from the surgery maybe I would feel better and be able to answer YES with some semblance of certainty.  Of course I complicated this damned thing , but she was very understanding.  I can go and make an appearance.  I can opt out at the last minute if I’m totally debilitated.  I can go and stay if it’s a magical day and sitting at a table doesn’t cost me too many spoons.  I don’t know why I view these invites as obligations, as duties, that I’m either 100% in or I’m 100% out.  I think I should just be honest with people about what’s going on and say “I’ll try.”

spoon theory 2

But it doesn’t help that I don’t look sick.  Not at all.  The flushing gives me a beautiful, healthy glow. People are commending me on my coloring.  I’m gaining weight with all of this. Partly the thyroid.  Partly my bad eating habits due to the debilitating nature of the fatigue (take out several times /week is not healthy ……. high calorie, high fat, high sodium.  Only so many times one can order salad, right?) The fatigue also poses a barrier to exercise. I used to be a fitness freak.  A high-energy fitness freak.  Exercise felt invigorating. Now it is an expense of spoons and could cost me calling out of work or oversleeping and not getting my son to school on time (I’m not exaggerating).  Truth.  And if I was skinny and telling people I couldn’t help it , they wouldn’t doubt me.  But I try not to talk about it.  I don’t want to see the tight, polite smiles and the slow nods.

Today is Saturday, no work. I spent today resting. I went out to lunch and just the drive took a lot out of me.  I don’t feel like I’m living. I feel like I’m existing.  I want to have fun. I want to go out of town. I want to go for a hike.  I want to do so many things.  Going to the grocery store has to be carefully considered.  My house is a mess.  I’m not a clean freak by anyone’s standards, but I like to not feel embarrassed if someone swings by without calling.   I prioritize the cat litter and the dishes – – the smelly stuff.

I had one 5-day stretch where I felt pretty good. One day I felt OUTSTANDING.  I had a high energy day and did as much cleaning as time allowed.  I took my mom for a ride.  Then the next day I fulfilled a bucket list wish:  the St. Patrick’s Day Parade in Holyoke.  It was great.  Driving there, standing, driving back …. I could do it.

Since that stretch I feel less tolerant of, less patient with this fatigue.  I get teary-eyed sometimes.  I have a lot of living to do.  I love doing day trips to Boston or NYC.  I was promising my son one for months, and finally splurged on an overnight because I knew I couldn’t drive there and back in one day and do what we planned to do.  That was in January.  I want to lose weight and don’t have the energy to do anything to help with that.  I want to spend time with my family, quality time, but seem to fall short.

I should also maybe badger my PCP & endocrinologist. I don’t even know how long it takes for one to feel better after having a carcinoid tumor removed. Should I have felt better by now?  Do I need to give it another few weeks or days or months?  But badgering costs spoons.  Some spoons are worth the sacrifice.

I know there’s a life lesson wrapped in all of this.  I’m just feeling impatient and wish I could learn it and move on to learning more about, ohhhhhh…. winning the lottery and traveling the world.

There. I’m done whining.



3 responses to “Existing

  1. YOU ARE NOT WHINING! I just wrote a blog along the same lines on Friday. I am still unable to work. My endocrinologist actually said, “well, at least does not effect the endocrine system”, and after waiting over an hour for a 2 minute visit, I did not have the strength to even respond. That was a year ago and I have not even looked for a new doctor. F**king cancer – are you kidding me?? So glad you are following up. This is the truth of our lives that people cannot even comprehend. Keep track of your spoons; it keeps us “sane”.

  2. I seem to have left the word Lyme out of my first quote – arrgghh

  3. Becki says:

    Thank you, Iammorethanlyme . 🙂 I think Lyme DOES effect the endocrine system. My Infectious Disease Specialist says it causes Hashimoto’s because the immune system is confused by the shapes of the bacteria and its similarity to the thyroid hormones. I think gluten confuses the body in this way, too, and that may be why Lymies do so much better on gluten free diets. I need to do that again but I’m in this vicious cycle where I am too tired to make dinner so I’m ordering pizza and shit. LOL. When the pain is great enough……… nice hearing from you.

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