Over the summer, I’ve felt like my cognitive issues or the neuro Lyme, have improved. In June, my LLMD here in town (I have another doc out of town) started me on a supplement, ATP Fuel. Since being diagnosed with Lyme disease in March 2013, severe fatigue has been one of my major, and quite consistent soul crusher, er, I mean symptom.
It’s continued to be a lingering symptom. Now, when I say fatigue, or severe fatigue, I don’t mean “tired.” There is a chasm of difference, one I never understood anywhere near well enough BLD ( Before Lyme Disease).
You know what makes me “tired”? Staying up too late, doing too many activities, physically or mentally exerting myself ( this excludes Pokemon Go).
But fatigue? A whole other ball game, my friends. Being “tired” means you need sleep so you sleep and wah lah! You wake up feeling like a million bucks! You are King of the World!
But with fatigue not so much. Instead, waking up is a never-ending continuation of the fatigue you’ve been feeling for the last 3, 6, 9 months, or even years. It’s like a prison sentence that you don’t even have enough gumption to get angry about. It’s like being in a cave without light. I could go on but basically FATIGUE is not being “tired.” Fatigue sucks the f-ing life force from your body. And the most depressing thing about chronic fatigue (well, there really is a list of things), is not knowing when or IF it will end. No matter how much rest and how little of everything else, that’s always the question. Will it Ever End?
I’ve written about fatigue before HERE and HERE. Hopefully, these posts can give you an inkling of the severity of the fatigue many Lyme patients as well as many chronic illness patients experience.
Hi there. I know, I know. It’s been awhile. Too long in fact. I hope things are joyful in your world. Between going back to work (over 2 months ago), and dealing with this severe fatigue, I haven’t really done much at all besides try to get to work each day. Nothing to write home about, you know? It’s kinda boring to write Hi Guys, I still have Chronic Lyme, Chronic Fatigue, and Fibromyalgia and some other stuff. And even more boring for you to read! But we’ll forge on.
While things at work are going well considering my limitations, I’ve been struggling physically and emotionally, mostly because, well, first, we are getting close to the 4 year mark of this diagnosis and the beginning of treatment for said diagnosis. And, yes, as I’ve shared before, there has been progress made, man, it sure feels like it hasn’t been much. I mean not much for a 4 year mark. As the patient, it is very difficult to be objective about measuring “progress” as well. Another reason I have been struggling is that the severe fatigue is back, yet again.
There’s no way to plan when dealing with severe fatigue. I can’t rest one day, and then feel so much better the next. I can’t save up energy to use as I would like to. Not that there would be much energy to save up at this point. Still, if I could save up energy, I would totally be strategically planning! But, severe fatigue is somewhat or more like always unpredictable. Anyway, it’s back and rearing it very ugly head!
As many chronic fatigue sufferers try to explain severe fatigue to a “normal” people, there don’t seem to be enough metaphors nor analogies to clearly describe what severe fatigue feels like. The Spoon Theory is a good start, but on some days, we have no “spoons.” So we get up, maybe, and start the day with a zero balance or a deficit of energy. And this just keeps going on, day to day. Month to month. It can be a spirit breaker for sure.
My doctor, at least my local doctor, looks at my labs and says, “yes, of course you are having severe fatigue.” All the numbers doc watches are low when they should be high. The EBV is flaring again, so that adds to the crazy chemistry going on in my body. Inflammation markers are off the chart too even with my dietary changes. Add that to the fatigue as well. Doc tells me to keep doing the B12 shots, the ATP Fuel, the Glutathione shots. I say, OK as I wonder when I might be able to make it through a day without feeling the crushing tiredness. I know (or at least keep the flame of Hope lit) that this cycle will end but sometimes it is hard to remember when every day, every hour is weighing on me like a heavy stone.
I feel bad when my friends ask how I am doing. They try to keep up with me, but I move at a snail’s pace anymore with nothing new to report for months, and now, for years. They ask, How was your weekend? Are you ready for the holidays? What are you doing next Saturday? And right now, unfortunately, I honestly don’t know how to answer.
How was your weekend? A: It was great. I spent most of it in bed.
Are you ready for the holidays? A: My head explodes, LOL – God, no.
What are you doing next Saturday? A: Uhm, I think I have an important appointment scheduled – with my bed.
Speaking of my bed, I need to go change the sheets and get it made so I can climb back up in there. Hoping this Sunday brings you cooler weather and happiness crafted for the soul.
Peace -B
P.S. Thoreau makes me happy. I hope he makes you a little happy too.
Hi out there! I wrestled with writing two paragraphs about how work is going and then, bam, they were gone. Since I cant muster anymore energy, it will have to wait. Maybe the disappearing text is reflective of my segue back into work? LOL
More to come on how work is going. Right now my Lyme brain cannot do anymore, so I bid you all a goodnight. Peace, my peeps – B
Do you have any tricks or tips to add to enhancing communication with others? If so, please leave a COMMENT! 🙂
As a recently inducted member of the Chronic Illness Club (CIC, if you will), I joined several online support groups. And now, 3+ years later, I see many posts about this topic. Many times, as Chronic Illness People, we struggle with how to respond when someone asks us how we are doing. Why do we struggle? Because all of the time, most of the time, there is some pain or symptom(s) we are dealing with at the moment. So when we are asked this question, we feel trapped. We debate on what we should say: Should I say “I’m fine” even though I really am not? Should I say “I’m good” and hope that next time, if I say I am not so good since chronic illness symptoms wax and wane constantly, the other person will understand? For those who have never had nor been around someone with a chronic illness, it sincerely can be a difficult thing to understand completely.
If you have a chronic illness, then quite possibly I am preaching to the choir about the misunderstanding part. And many times, as members of the CIC, this is where we can severely get bogged down in these encounters with our unrealistic expectations, our over-analysis, and our misconception that there is a lack of empathy from others. Yes, there are times we will have encounters where the other person does not meet our minimal expectations,where this other person does not empathize at all. But I hope I can convince you that these negative encounters are or will be guaranteed to be few and far between after you check out my tried and true tips! So without further ado…..
While this may seem like is an obvious one, let’s explore the root of why we may not want or don’t use this response more often and why we often are frustrated after we have the interaction. As CIC members, sometimes, we feel guilty merely stating “I’m OK” because in truth, we aren’t. Many times we are dealing with invisible symptoms, ones that can be very painful and/or ones that make us feel terrible inside such as headaches and nausea. Somehow, we feel that if we do not respond with the absolute truth that we are lying. On the other hand, sometimes we use this response but we really mean, “I feel like CRAP!” and when the other party doesn’t read our mind, we get frustrated, angry, and hurt. We think that the other just doesn’t care about us because he/she didn’t “get” that we merely stated the pat answer but expected a much different response. I know I have done this many times as I have tried to navigate chronic illness and communication. It’s tough. But, none of us are mind readers. If you want someone to know anything, you must tell them in concise words. That’s just how it works.
2. “I had a rough day yesterday, but I’m doing a little better today.”
With this response, perhaps it will feel a bit more authentic and truthful. We have days, hours, minutes, where we have relief, and we can enjoy ourselves. But those moments can change on a dime as we well know. One of the hardest things, I think, for others not in the CIC to understand is how quickly symptoms can change. It was a challenge for me when I first became ill to get the hang of this game! One minute I can be decent. I can hold a conversation with absolutely no problem. Yet, not 5-20 minutes later, I am suffering severe nausea, and I am experiencing word-loss. This occurrence is hard enough for those of us experiencing this to discern, let alone someone who had no idea how this works. Personally, I like this response or a modification of it because I’ve found that people can understand it and relate to it on some level. Another version of this might be “I had a great day yesterday, but today is tough.” Most people get this kind of a statement.
3. “I’m really not doing too well today, but thank you for asking.”
This may result in the other person not knowing how to reply, but in my limited experience, people get this one as well. While you are not explaining the sordid details of why you are not feeling well (you can save that for your BFF who REALLY gets it), you are telling the person, hey I’m not doing too hot. Also, you are acknowledging his or her effort and thoughtfulness to check in on you. Look, bottom line is that if every interaction with us becomes a negative or an uncomfortable one for the other party, it probably won’t happen much, if at all after awhile. This is just human nature. We move towards positive interactions and away from negative ones. Granted, sometimes this can trigger more questions, but maybe that is a good thing! It can open the door for us to have a candid conversation about our illness. This can also lead to more positive interactions, as well as more understanding and empathy.
Regardless of how we respond to the question above, in the end, it isn’t the other person’s responsibility to make us feel a certain way, nor his or her obligation to “guess” what we mean. I know, I know. Psycho babble. But it is to our advantage if we can make these interactions more positive and less stressful for ourselves. All in all, others are sincerely trying to be kind and caring. While this isn’t as easily done with us, it can work. These small and yet important connections with others can be spirit lifting. It can help of feel connected to something bigger than ourselves. It can help us feel less isolated and less misunderstood.
Do you have any tricks or tips to add to enhancing communication with others? If so, please leave a COMMENT! I would love to hear about other techniques.
On a final note, I am on summer break from teaching high school. I just had a colleague text me, “Just checking on you and your health. I hope hope you have been able to relax!” I am replying with, “Yes, indeed! Summer break is so wonderful. I can rest whenever I please. Thank you for thinking of me. How are you doing?”
This completely made my day. Wishing you a both a painless and joyful day. -Belle
So for about the past monthish, I’ve been struggling with both fatigue and a weird rash that popped up on my face and arms. Let’s just say it wasn’t fun. But, I’m back on track, the rash is gone, the fatigue hangs in, and we are moving forward into our last week of school.
Being chronically ill with Lyme disease or chronically ill with any other disease means figuring out what one and do and not do on any given day. And while working full-time, my routine is basically, go to work, come home eat and rest. Weekends are for resting. This spring, I have missed several functions due to feeling terrible. You know, like baby showers, dinners, birthday celebrations, hanging out with friends and family. Looking back on this past spring, I think I have been at a real function maybe 3 times? Now, don’t get me wrong, I am in no way a social butterfly. But still. I definitely try not to feel guilty when I have to cancel, and I try to be good to myself, especially when I feel depressed about having such a restricted lifestyle.
While honesty is the best policy, sometimes it just works better to try and put on the Normal Act. Recently, I was able to attend a celebration. Overall, it was really nice. I also was able to see friends and family that I haven’t seen in quite awhile, so that made it even more awesome. Here’s the thing though, it wore me out. When I get into situations like these (and again, it isn’t very often), I do feel stressed out. Sometimes just talking can be an absolute chore and/or nightmare. And while yes, I am a teacher, and I have to talk a lot in my position, well, it’s hard to explain, but it is different. Worst case, as a teacher, I can wing it because I have experience. Yes, I do have conversations with my students as well, but most of the time his happens, it is usually just one on one without a ton of extra stimulus. It is easier to “act” normal and to be in control of the situation. Not so much at a party.
Sometimes, in a social situation like a party, or something involving many people, I really do my best to “act” normal, to put on the public mask. But it is damn hard. It takes a lot of work. The noise level, the meeting of people, the small talk, the picture taking. Wow. It just overwhelms me. I guess this is due to the neuropyschiatric symptoms of Lyme. One of my strategies to dealing with this kind of thing is I try to switch to auto-pilot. I try not to think too hard. I try to speak in simple sentences. Really, not speaking is the best.While at said party, I forgot someone’s name that I have known for quite a long time, I switched up words, I forgot words. And as my body and brain became more tired, the worse it became.
However, people can be so very kind. They want to talk to me about how I am doing, how is the treatment, am I making progress, etc. I do indeed appreciate it all. But it can cause a bit of anxiety for me as well. I think it is my cognitive wires getting crossed. So some things that came at me the other day: Have you tried ***treatment?, You look great, you must be feeling better!, Mental health is 50% of overall health, and more. Of course, I want to engage in conversation, I want to interact with others. Yet, this alone takes so much energy. It all just wore me out.
On a positive note though, like I said the party was fun, and I was able to rest all day yesterday. I hope you all are enjoying this Memorial Day.
So here we are, a Thursday afternoon. Another day of rain. Another day of school closure. Yes, you are correct. We live in the Houston area. Our little own piece of paradise or the “mud pit” as my HB calls it is located outside of the metro area and just west enough to avoid the horrible and devastating flooding that has been happening.
With all of that in mind, my own small world is truly not of any concern nor should it be.
And yet, I will share. Yesterday, one of my friends, let’s refer to her as WF, texted and invited us to meet her and her husband for dinner. My HB was gone to get groceries and run errands so we instead decided this evening would work better. OK. Cool.
Except that, and I know this very well, often, because of my symptoms, we have to cancel plans. My friends know this as well. The day started with my stomach in turmoil. Headache. It rained for several hours this morning. Joy. I took anti-nausea meds and lay back down for a few hours. Back up about 2 p.m. I went outside with the dogs and got a bit of fresh air. Back inside to do laundry, mopping, and such well, you know, “mud pit.” I consumed a few crackers with almond butter. Then, the nausea returned. The bandage is to take the meds…and I have been doing this now for a few months. Instead, I drank some alka-selzer gold – no aspirin – which can help a bit.
Still no relief. The only way to describe what it is like to a non-lymie is it feels like the flu. Headache accompanied by a nauseated tummy with a possible side of indigestion. Lots of fun. A perfect situation to go out to eat at a restaurant. Yeah, not so much.
The conclusion? We had to cancel. My HB kept asking me if I just wanted to go and have drinks, if I wanted to go without him. I know he meant well, but feeling bad is feeling bad. In fact, he’s cooking up some vegetables right now and the smell is making me nauseated. Please don’t tell him.
Anyway, to make this long story longer, when I told my HB that I was feeling yucky and that I couldn’t make it, he said, “Really, you just shouldn’t make any plans. You always cancel.” Wow. OK. Yes, there is a lot of truth in this statement. And honestly recognizing that truth is what grabbed and twisted my heart. I could only reply, “You are right.”
Still. While I do know that breaking plans is disappointing not just for me but for everyone involved, I just shouldn’t do it at all? Then what? I can barely keep up socially at all with my friends and family. I miss more functions than I can attend, that’s for sure. But, I don’t know. Anyway, I’m back in bed now, trying desperately not to be bummed out about it all but it’s pretty much not working.
I short change everyone in my life. I realize that yes, I am sick, but disappointing so many other people surely has taken its toll on me as a person. I feel less than. Not all of the time but definitely right now. My friends were gracious as always about our cancellation. But for me? My heart still feels twisted up.
Hi there friends, it’s been a little while! These past few months have been a real challenge but I think I’m on the upswing at this point. Spring Break seemed to do a world of good for me overall. I was able to get out and do things with people, yes, REAL people, and that made for a great time. I was able to push Lyme to the back burner for a bit. It was much needed nourishment for mind and soul.
So what did I get to do during our break from academia? Funny you should ask! I made a trip to the south of here to one of what I consider to be my hometown on the Texas Gulf Coast. One of my dearest friends was back home (Texas) from Seattle visiting her family , so I traveled a few hours from here to go and spend some time with her and her family as well as with one of my brothers and his family. I was a little worried about the trip; I had been having severe fatigue for weeks before this. I was able to stay a few days, and it was great fun. Mostly, I hung out with my pal, MM, and her son, and her extended family, all of whom I have known for more than 20 years. We played games, talked, sat outside (the weather in fact was very much perfect and no mosquitos!), and ate yummy food. I also got to spend time with my brother and his family. It wasn’t a long trip, but it was well worth it.
Mid-week of break I was at home doing a few much neglected chores. You know the ones. Dusting, organizing, etc. And I was able to rest when I needed to so this made it possible for me to complete some things I just couldn’t and can’t do while working. For the most part, the weather was pretty nice! Sometimes, during Spring Break, it rains all week, but this year, the weather was perfecto. Also, our almost-baseball-team of pups received baths, nail trimmings, and haircuts!
Then there was a last minute, week end trip to the ranch of my pal MM’s brother. We all met up, her family and me and my Better Half (BH), out in the country, and I mean country as in no cell service. It was totally awesome. There were about 14 of us, kids and adults, and lots of shenanigans. Some activities included, skeet shooting, trampolining, adult beverage drinking, drone flying, and skunk hunting. And one mean game of Cards Against Humanity! All in all it was definitely an adventurous trip.
Honestly, I think I did more socially during this break than I had the previous 3 months combined. Did I get tired out? Yep, sure did. But it certainly did my heart good to be able to do some things and be with people I love. Luckily, not many of my symptoms reared their ugly heads during too much of the break. Mostly, I savored each moment and gave thanks for everything I was able to do and for all of the amazing people in my life. *cue nostalgic music
I hope this finds you well and happy. Peace to you and yours -B
Well, my people, it is Sunday afternoon. I’m really happy I survived this past week. I hope all of you did too. I am feeling much better today. Thank you all for your support. Today, I was pretty productive if I do say so myself! After a week of being too sick to do anything besides lay in bed, I was up and fairly active today. And no nausea! Which makes this day even better. Since I was way behind on grading, I told myself that if I could knock that out, I could come and write here. It was a great incentive!
I’ve been thinking a lot about this blog, and its focus. Yes, the focus is on Lyme disease and more specifically, my own personal experiences with treating and living with this disease. Over this past month, I have run into some people on social media and people in in my day to day life who also deal with a chronic illness and that, for the most part, has been a wonderful way to connect. However, it has also made me reflect on my decision to begin telling others about my illness. Coming out of the closet, so to speak, about having Chronic Lyme disease.
When I was first diagnosed with Lyme disease, I told my immediate family and my boss. In the beginning, while I knew I would have to treat for awhile since I had been sick off and on for about 3 years before the diagnosis, I had no idea that this might be a chronic illness for me. And, as I was so very sick back in 2013 when I found out finally what was going on, I thought it only prudent and honest to explain what was going on to my boss. The support was overwhelming. I also shared with a few colleagues who are dear to me. Otherwise, no one else knew, and I was happy to keep it that way. In my head, I felt that telling other people was a burden to them. It almost felt like by telling them, I was making excuses about why I couldn’t keep doing everything I had been doing. Being sick, to me, was a sign of weakness. Not that I thought that about other people. That only applied to me. Always the perfectionist, I am way harder on myself then on others (although I am sure my students would beg to differ!).
This strategy, the one of silence and limited sharing about my health, worked for a bit. Well, almost 2 years. And while I did make progress in treatment, I just could not continue with all of the responsibilities I had at work. I was in a leadership position and a club sponsor. These along with teaching 5 upper level junior/senior classes every day. I just had to make changes and move some things off of my plate so I could focus on improving my quality of life. This treatment thing was taking much more time than I had anticipated. Making the decision to no longer sponsor the club I had started back in 2008 and then also stepping down as a leader, these were tough, tough decisions. I struggled with feeling less than, incompetent, weak…oh, the list goes on. Reorganizing my priorities was a challenge. But I knew that I did not want to end up sacrificing my work by becoming more ill or vice versa. Something had to give.
Taking the bull by the horns, I relieved myself as club sponsor and my leadership position at the end of last school year. But in order to do this, more people were going to have to know the reasons why I was making this decision. Uncomfortable to say the very least, at least for me. I’m not big on sharing private things unless it is with close friends. In order to move on though, I did indeed share the basics about my health issues with my colleagues and my boss. I am chronically ill at this point, I have good times and then I have some really bad times, such as this past week, and I cannot make it to work. Communicating with others what was/is happening to me has become a huge relief.
Looking back, I honestly can say that I wish I had done so earlier on. Being more open and honest about my health has actually led to some great conversations with others. It has humbled me in ways I never knew. The kindness and understanding people have is truly amazing. Do I still have days where I feel like a burden? I sure do. But opening up has been a truly important step for my recovery, I believe. Thank you all for joining me on this journey!
While the work week has been shorter literally, it’s felt longer physically. I’m pretty sure today is Friday. With the temperature at 39, I’m creaking along. TGIF, my people, TGIF.
