Life has been an adventure lately.
HEALTH ADVENTURES:
Right when I got back home after visiting family over the holidays, the c. difficile came back. I guess this happens in 20% of cases. Since then, my NP and the pharmacy have been trying to get another round of vancomycin approved....and we wait. Copious amounts of probiotic seem to have helped some. Unfortunately a plethora of trips to the bathroom caused something called A. F. I won't go into more detail than that, but if you know what it is, you know that it is excruciatingly painful. One of the worst pains of my life. So, I've been doing a very very light diet in order to decrease my trips...it's been awful. It's hard to sit, hard to stand, and sometimes even hard to lay down the pain is so bad.
What an adventure!!!! It seems to never end. I really thought I'd solved the c. diff problem only to be hit with the reinfection and this subsequent added joy, the AF. A double WHAMEE!
EDUCATIONAL ADVENTURE:
Despite the pain and ill intestinal tract, the M.E. hasn't been as bad as the fall was so far. Yippee! So, my plan to go back and work on my PhD is in place. Now before you worry about the amount of effort and possible subsequent crashes or relapses, put your mind at ease. I'm working at home and in bed. I am starting with a schedule of 1 hour a day and so far so good. If I can maintain this for a while I will up it to 1.5, etc. I'm holding my breath, but so far I'm actually enjoying being engaged in the academics. I mean I managed to do a Masters degree while ill (with accommodation and extra time). I try not to think ahead too far with this, but if I focus on one day at a time, it's amazing how stuff gets accomplished. My favourtie quotation since I've been ill is "A journey of 1000 miles begins with a single step".
DRIVING ADVENTURE:
I also drove myself to the border (just over 1/2 hr away) to pick up a gift from a friend. After sitting for 10 minutes the pain of the A.F. was bad. It only got worse, but still, it felt so empowering to be out on the beautiful open highway with no traffic and amazing scenery. I took the dog for company and stopped at a beach along the way to let her run. I haven't driven that far in ages and I expect I'll crash, but I'm still feeling proud.
ADVENTURES AT HOME:
Things with the drama here continue. Unfortunately it's not my place to write about the issues here, but they sure add to the adventures. While I'm an outside party to the happenings, it sure is hard to watch the suffering of others. Things are often awkward, frustrating, and sad around here these days.
SOCIAL ADVENTURES:
So my one and only new years resolution this year was to broaden my circle of friends here where I live. I realized recently that I have a very very small support/social network and that I would just love to have a few more friends. Over the time since I moved back here, it's been really really hard to meet people. I've made 7 pretty decent friends overall (outside my roommates who are friends from way back) 6 of whom have since moved. When you say no to invites 9 out of 10 times, it's hard to make friends. When you live in your house-cave, your bedroom-cave and have limited energy even sometimes to talk on the phone, how does one make friends? Top the fact that I am now at an age where most people already have their circle. I don't have a workplace to meet people and my volunteering attempts all flopped because this illness can not be scheduled. Plus, I don't have a partner or family which is what most people my age are doing right now (raising kids).
Despite these challenges, I'm going to try to find ways to reach out. I might even try being a little more direct if I get a good feeling about someone with friend potential....e.g. "look, I'm chronically ill, but if you want to hang out sometime and ask me 10 times, chances are I may say yes once and we could have a blast". One of my long distance friends and I joked that I should post an add "Very nice (chronically ill) person seeks friend. Must not be put out when most outings are declined. Friend type activities must be low energy but could include watching movies, drinking wine, talking about books, playing scrabble, eating good food. Must enjoy cynical sense of humor". Does that sound pathetic?
Wish me luck.
Great to hear you have more energy and are getting into working towards your Phd...so happy for you! Hope this awful infection leaves soon!
ReplyDeleteHow do I say this with decorum?
ReplyDeleteAh yes, an AF is a literal pain in the ass.
You have my sympathies. If we chat on Skype sometime soon I even have some suggestions that may help ease your pain and avoid a recurrence because that condition can become a repeat offender too.
My sister is battling the c diff bacteria right now too. She was given long term antibiotics (4 wks) to treat an infected wound and the doctor failed to tell her the simplest thing: take probiotics whilst taking antibiotics. It's the easiest thing on the planet to convey and the easiest thing on the planet to remember to convey: antibiotics = take probiotics. So, this moron didn't tell her to take any and I didn't know that she was on antibiotics or else I would have told her and here we are with c diff. Like you, she was treated for it with even more antibiotics and then four days after stopping, whammo, it was back with a vengeance. Now a CT has indicated that she has c diff induced colitis. Nice. I think far more than 20% of folks are reinfected and we just don't hear about it. I wish you the best of luck in fighting it off again this time. What a struggle.
You realize that a "normal" person who had chronic c diff, an almighty AF and ME wouldn't even consider an outing to a restaurant, let alone a return to studies. And so, I must say: you are amazing! Good for you. Just like you say, one step at a time. You're so fortunate that your university is willing to work with you on this, I wish I could have said the same about mine. Maybe they will someday.
Hope to chat soon. Give the doggie a hug for me.
jenji
Gosh Jenji, while I'm sorry you've had the AF, I can't tell you how happy I am to know someone who has had this aweful thing. It's terrible. I actually could no way go to a restaurant at present because of the crying and screaming everytime you know? It's downright embarassing and I'm so happy I'm mostly home alone these days. I bet you are right about the c. diff to. I'm pretty sure colitis hasn't happened yet for me b/c I had some mild last winter and it was very painful. But not as painful as the AF to be honest...this is excruciating. The c. diff has improved a lot just with the expensive probiotics - florister and bioK.
ReplyDeleteYes I'm very very lucky re: the PhD stuff. I do an hour of work a day so far and actually quite enjoy the distraction. I have no courses to attend, and since I won a grant, I don't have to do any kindof GA or anything. We'll see. After a year of medical leave I decided this is it, if I can't manage to make progress this semester I'm quitting....But my advisor knows about my condition and is supportive...we've even devised a study I can do from home in bed (phone interviews). Let's chat soon, I'd love some insight on the monster.
Jenji, sorry, I'm loosing my head a bit, what I meant by you are right about the c. diff is that I think prob. more than 20% of people reinfect. This is my third round that we know of, but I'm pretty sure I had it last spring too when things were really bad.
ReplyDeleteI think you are on the right track on making friends--lay your situation clearly out on the table and tell them exactly how much time you plan for an activity you do together. Several times in preparation for the infrequent lunch with a friend we plan for her to get there first and order, then I come 15-20 minutes later and then I'm not tense over the possibility of slow service and sitting too long. Buffets are good,also more control over the time. Also I no longer am interested in a conversation which centers on one's travels. I can't travel, haven't for well over a decade, envy people who can and honestly don't want to hear about one's trip to Europe the entire lunch !!! Are there any book clubs in your area ? I've thought of attempting to go to one.
ReplyDeleteGood luck on the studies and sure hope that AF heals.
Leah
Good luck with all the adventures, upnorth!
ReplyDelete