Really Struggling

[the_phscale]

Hi all,
The past two weeks have been exceptionally difficult. I've been sick for about a year now, diagnosed as Lyme-positive just about a month ago, with at least two co-infections (bartonella and babesia, still waiting on the Galaxy lab results for some others). I'm also a university student in the penultimate quarter of my BA.

Luckily I have a pretty good Lyme doctor who already has a treatment protocol and has seen other cases like mine. Because of the possibility of a herx reaction, we've decided not to start the antibiotics until the end of my quarter, which is in about a month's time. I was fine with that when we made the decision- although I obviously wasn't getting better, I thought that the downward progression had stopped. Of course, about two weeks later the severity of my symptoms increased again, and now I'm finding it very difficult to function.

Like I said, I'm a college student, so the bar is set pretty low but...I find myself dropping the ball on many of my responsibilities, sleeping close to 13 hours a day, sometimes skipping meals because it takes too much effort to prepare something or to walk to the dining hall. I no longer have the energy to clean my room (basic stuff, like vacuuming). I'm already a part-time student, only taking two classes, but I guess I'm starting to worry that I won't be able to finish the quarter- that I'll have to take a leave of absence. I feel a lot of shame, or maybe guilt, over not being able to take care of myself. I don't know how long I should keep pushing myself to finish these two classes, at the expense of my social life and my ability to live on my own, and when I should recognize that I'm doing my body more harm and need to take a break, move back home for the summer, and start the antibiotics.

 

[pcmenten]

I feel your pain. I promise, you'll feel better soon.

What's so frustrating is that others can't tell you're sick by looking at you. Externally, you probably look fine, but you just can't function.

You're getting slammed with all those infections. Since you're not doing well, I don't see the down-side of starting medication. You might be able to salvage the quarter. I suggest going back to your provider and asking for some sort of help. I also suggest getting tested for EBV, CMV, and HHV6. I can tell you first-hand, they can reactivate when you're sick with some other infection.

Check back. I'd like to hear how you do.

Paul

 

[Deltrus]

Good luck getting better and don't break yourself apart if you do poorly or fail in your courses.

Personally when I failed out of university due to ME it sent me into depression that lasted a good 2 years and could have lasted longer if I didn't find the right antidepressant(nsi-189). It felt so horrible knowing I let everyone all down, my grades lowering day by day as I laid in bed.

What is important is that, from what I understand about lymes disease, you caught it early and thus should make a full recovery. As long as obstacles aren't permanent, they are experience. My illness gave me passion which I never had before, I just wish I recovered.

 

[hellytheelephant]

Hi all,
The past two weeks have been exceptionally difficult. I've been sick for about a year now, diagnosed as Lyme-positive just about a month ago, with at least two co-infections (bartonella and babesia, still waiting on the Galaxy lab results for some others). I'm also a university student in the penultimate quarter of my BA.

Luckily I have a pretty good Lyme doctor who already has a treatment protocol and has seen other cases like mine. Because of the possibility of a herx reaction, we've decided not to start the antibiotics until the end of my quarter, which is in about a month's time. I was fine with that when we made the decision- although I obviously wasn't getting better, I thought that the downward progression had stopped. Of course, about two weeks later the severity of my symptoms increased again, and now I'm finding it very difficult to function.

Like I said, I'm a college student, so the bar is set pretty low but...I find myself dropping the ball on many of my responsibilities, sleeping close to 13 hours a day, sometimes skipping meals because it takes too much effort to prepare something or to walk to the dining hall. I no longer have the energy to clean my room (basic stuff, like vacuuming). I'm already a part-time student, only taking two classes, but I guess I'm starting to worry that I won't be able to finish the quarter- that I'll have to take a leave of absence. I feel a lot of shame, or maybe guilt, over not being able to take care of myself. I don't know how long I should keep pushing myself to finish these two classes, at the expense of my social life and my ability to live on my own, and when I should recognize that I'm doing my body more harm and need to take a break, move back home for the summer, and start the antibiotics.

Hi- Sorry you are struggling- that is such a difficult decision to make. I just wanted to say two things about your post
Firstly 'dropping the ball'. There is a lot of pressure on you when you are a student and it can feel as if it is your one and only chance to study and fulfil your dreams. There is an alternative to dropping the ball or struggling to carry it. You can make a reasoned decision to set it down for a while....and to pick it up again when you are strong enough.

Our society places a very high value on 'being independent' and not needing help. It sounds like ( through no fault of your own) you need help. It is great that you have found a Dr who you can work with..and if your parents are happy to have you at home for the time you need to heal, then ask yourself if your best friend was in the same situation what you would advise them to do?

Feelings of shame and guilt you describe are normal - those are also the feelings that led to me pushing myself too hard in the past...and to me getting sicker. Guilt and Shame are not your friends and do not want the best for you!
If you are getting to the point where you cannot function then it is a no brainer- you can chose to love yourself enough to give your body what it needs- REST!

 

[Skycloud]

@hellytheelephant has given you great advice, @the_phscale. In the meantime see if friends can fetch you meals from the dining hall, or do a little shopping for food that takes no or very little preparation. We all need help sometimes.

 

[the_phscale]

Thank you all so much for your kind words. Its incredible how much it helps just to know that other people are going through the same struggles that I am- not to mention validating! I've decided to take y'all's advice and listen to what my body is saying (which is "please, woman, rest already!") and I'm taking the week off of being a college student to rest up at home.

Hopefully a week's rest will allow me to finish out the quarter and take my two final exams, and then I'll have the whole summer to rest and start the heavy-duty meds. I've also been in contact with my doctor to talk about starting the antibiotics sooner rather than later; it'll mean taking the chance on a herx reaction, but that's the kind of thing that is much more visible and it's hard for a professor to penalize me for absences when I'm obviously a mess.

 

[the_phscale]

Hi fam, an update on me! Caution: this post is mainly for venting purposes, so if you're already stressed, perhaps give this one a miss. Good self-care, y'all.

I ended up going home for a week, and it helped a lot! I slept for probably 50% of each day and by the end, I felt like I could go back to 11-12 hours of sleep a day, rather than the 13 that I was taking in previously. I also just felt less strung out and stressed over my ability to continue the quarter, less like my body was this heavy thing I had to drag around. I've been back at school for a week now and things are still better than they were before my break, but I'm starting to feel my functionality slipping back down. It's a fairly stressful environment for me, because not only do I have to be thinking about how to care for myself, I also deal with events and commitments popping up, emotional stress over going/not going to class and being/not being a "normal" college student. I feel that it really is the best thing for me to be at home right now, where its an almost no-stress environment (plus cats!)

I think I can get permissions from my professors to take an "incomplete" in their classes and then finish the papers and final exams during the summer or next fall. Or, I could come to private arrangements with them about establishing "attendance" by writing summaries of the readings instead of being there in person- something like that. That would allow me to finish the quarter from home. I've also gone on sick leave from one of my jobs (tour guiding) very easily and with little stress, thanks to my incredible supervisor! The sticking point is that I have a second job, that of being a Residential Advisor or RA, and my boss and I do not get along well.

I only have a few more commitments to that position remaining, but I do have scheduled duties that have to be done in-person, and I'm really anxious and afraid about asking to be relieved of those duties so that I may go home. This supervisor was very kind and almost paternal up until my interview to be rehired, during which he yelled at me quite extensively for "not being honest or upfront about [my] illness" and "being unreliable". I was informed that because he and the few other people responsible for the RAs felt that I "needed to take some time to focus on [myself]", I would not be rehired- this is probably discriminatory on the basis of disability, but whatever, I decided not to pursue the issue. That was obviously a very emotionally distressing experience for me, and now that I have to email him or speak to him in person about leaving the year early, I'm afraid that we're going to have another horrible interaction. I'm also concerned, because that kind of emotional distress can be downright dangerous to me at this point- the shock and stress of the interview made me shaky and weak, and increased my brain fog for nearly a week.

I want to just give up and stick out the last three weeks- maybe continue with my accommodations so that I don't have to be in class but continue living on campus, on my own, to fulfill my RA duties. That way I wouldn't have to talk to the supervisor! What I will probably end up doing is emailing him to broach the subject, and try to avoid an in-person meeting. Gosh, I am overwhelmed. So ready for the summer, when I can really rest and focus on my health for the first time since becoming sick!

 

[Valentijn]

@the_phscale - It might help to take someone with you to meet with your boss. Bullies are a lot more polite when they don't have an advantage, and there are witnesses.