chroniclesofchronicillness-blog

[chroniclesofchronicillness-blog]

Trying to keep up my end of a conversation during brain fog...

[chroniclesofchronicillness-blog]

Harry Potter and the Revenge of the Spoonie

Death eater: *cruciatus*

Me: Nice try but this is like a 6/10

[chroniclesofchronicillness-blog]

Things I've learned since becoming ill...

• It’s nobody’s fault. It is genetic. It just happened.

• Do not be too proud or stubborn to ask for help. You need it.

• Brush your teeth and wash your face (even just with a baby wipe) everyday if you’re able to do so. It makes you feel more human.

• Shower or bathe whenever you are able to. Good personal hygiene is good for your mental health.

• Some people will leave. You don’t need those people. Others will stay and they are wonderful human beings.

• You are not a burden. You are not useless. Do not be guilty. Please. Guilt will eat your insides.

• You have not lost who you are. You just now have to make adjustments to accommodate this new thing.

• Accept the fact that you have an illness. Being in denial will only make your mental and physical health worse.

• Clean pyjamas are a divine gift. As are clean bedding and blankets.

• Self care is entirely subjective. If you want to do yoga then do it, if you wanna sit and eat takeout in front of the TV in a squirtle onesie then that’s fine too. Whatever makes you feel good, or at least better.

• If you are tired then rest. Do not burn yourself out. It doesn’t matter what time of day it is, if you need a nap then you have one.

• Talk. Write. Sing. Paint. Draw. Dance. Do something to express your feelings. Don’t keep them inside. You’ll explode.

• Don’t worry if you can’t adjust right away. It takes time. A lot of time.

• Do not feel ashamed or embarrassed. Unfortunately illness often has embarrassing symptoms or such. It isn’t your fault. People who allow you to feel embarrassed about such things are terrible people.

• Keep your sense of humour. Some days it’s the only thing that gets you through.

• There will be good days. Grab them with both hands and enjoy them. Savour them. Spend them doing things you love, things that you can’t do on bad days.

• Prepare yourself to the best of your ability. Like…always have a hospital weekend bag packed for emergencies, keep a bed day drawer or bag near to where you sleep, have food or snacks close by, always have a water bottle…

• Take your meds. Please. If you have a serious illness for the love of god don’t listen to the “big pharma” conspiracy theorists. You need your meds. They keep you alive. They enable you to function.

• Research your illness. Keep yourself informed. But don’t dwell on what might happen. Please don’t scare yourself.

• It’s okay not to feel positive all the time. It’s okay to feel down. It’s perfectly natural. But try to be as positive as you can. For your own sake.

• Your own health comes first. It’s not selfishness it’s survival.

• Be kind to yourself.

• The bad days can be horrific but the good ones are beautiful, and so worth holding on for.

• Don’t give up on love. Just don’t.

• You are a badass warrior.

[chroniclesofchronicillness-blog]

I was going to post this on facebook, but then I bitched out.

Those of you who have known me for years know that i've been public as hell about things that i've struggled with, including but not limited to my entire reason for creating a brand-spanking-new facebook as of last year, my partial hospitalization, my day to day chronic illness. Please know, that I will continue to be public with things, both positive and negative. I go on social media, and I think, AS IF. Nobodys life is perfect, we all struggle, and there's something that I feel like a lot of people don't realize as of late. IT IS OKAY TO NOT BE OKAY. It's okay to tell any random person you come across in your day, HEY. I'M NOT GOOD TODAY. I know the first time you come across that bluntly honest person, but in my experience, i've found that i'm met with empathy in most situations. In my heart of hearts, I don't think that anyone wants to struggle by themselves. If I can help someone from struggling by themselves, I will. On some of my worst days, when i'm dragging ass, and someone asks me that dreaded three word phrase "how are you" if I'm really that bad, i'll tell them "you don't want to ask me that". For whatever reason, that throws them off. Then you get those who say "oh well i'm having a bad day too" and then you open the door for a conversation, an honest conversation. basically, what I guess this rant is coming down to is, I think if we are more genuine in our social media portrayals, and even in our day to day lives in general, maybe we won't feel so weird, so isolated. Maybe we won't struggle as much, because we'll work together to find a solution to whatever the problem is. MAYBE I'M WRONG. MAYBE I'M THINKING IDEALISTICALLY. But maybe it wouldn't hurt to try.  

[chroniclesofchronicillness-blog]

THE PAST WEEK.

Life got super busy [as it usually does] I worked Tuesday through Friday, and today is my much-deserved weekend [if I do say so myself]. So i’ve made myself a coffee frap and i’m on my way.

Tuesday was my boss lady’s first day back from vacation. She went somewhere warm and wonderful. AND SHE BROUGHT ME BACK LAYS POTATO CHIPS. I have such a good relationship with her. She’ll be moving in a few months and i’m pretty sad about that. She’s seriously one of the best people i’ve ever met. She’s caring and understanding and i’m comfortable talking to her about the shit that’s going on in my life. Which is awesome. It’s a big part of the reason I love my job. 

While I was at work, a cap that I had put on my tooth about 3 weeks ago fell out. so I scheduled an appointment for Thursday...stay tuned...  Tuesday was also the day that the boyfriend and I went to a show. Said show was in the city, at a venue i’d never been to. Background: Pre-illness, i’d go to shows...A LOT. I was the girl in the pit. If a confrontation would arise, i’d just move somewhere else. I can say that i’ve been flaring pretty good all week. I haven’t had 2 days off in 2 weeks, so i’ve been struggling. I cannot stress how important rest is for me. ANYWAY. the seats we had were like baseball stadium type seating. if someone stands, you have to stand too. This was the first show that I really COULDNT stand. It hurt too much. we walked to the venue, i’d worked prior. it was a perfect fibrostorm. The girls in front of me stood; I waited it out one song, and asked them if they could sit so I could see the stage. It was one of the first times I was doing something that I loved since my diagnosis. It was glaringly obvious that I can’t do things the way that I used to. I wept. I wept for the fact that the girls were willing to sit down. I wept that I would have had no problem standing because its a show and thats what you do, except now i’ve got my bff fibromyalgia to chill with. I ended up thanking the girls while I was crying, I had to look like a psychopath, crying because someone did what you’d requested of them. but it meant a fucking lot to me. We ended up leaving early because I had to work the next day, and I let them know that I was leaving so they could do as they saw fit [ie: I hope they stood for the last 4 songs.] A few days later, someone in an online support group i’m a part of posted an article about mourning the person you were prior to chronic illness. It really resonated with me; especially considering this event. 

This is the link to the article; if you’re interested:   https://themighty.com/2016/10/grieving-my-losses-due-to-chronic-illness/

Wednesday was pretty uneventful. Nothing out of the norm. nothing super noteworthy. Overall I like days like that. The mouth hurt. 

Thursday morning I went to get the bastard cap put back on. ON TUESDAY they told me “oh you cant come in today, since its a cap dr so and so needs to deal with it” so I waited. I wasnt able to glue it back on and I figured it was safer to *not* keep trying to put the thing that was falling out back into my mouth and end up swallowing $500. I don’t have an extra $500 laying around to get a new cap. SO I KEPT IT OUT. Dentist says “oh we need to remove tissue because its grown over” so I end up getting numbed up and the cap gets put back on. i’m on antibiotics, the mouth is painful and I can see where she removed some tissue. NBD, NOT LIKE I HAVE STOMACH ISSUES TO BEGIN WITH AND THIS COULD HAVE BEEN FUCKING PREVENTED IF THE CAP WAS PUT IN THE WAY SHE DID IT THIS TIME THE FIRST TIME. -_- VERY UNHAPPY. QUITE DISSATISFIED. 

I continued thursday and friday with rather severe fog. Friday night I had this weird new-ish symptom where I felt such severe pain in my legs and hips; it felt like I couldnt keep still. moving hurt. not moving hurt. It was weird and I hate it.

This morning, I felt ok. I had some decent painsomnia due to the legs. But waking up wasn’t so much of a struggle today. My stomach is acting up due to the antibiotics. Its boyfriend and my anniversary celebration weekend [we aren’t off together for the rest of the month; we don’t exactly know *when* exactly our anniversary is, we just know is march lol]. We’re planning on going out to dinner; and probably shopping. I let him know that my stomach is fuckity, but we are still going to give the day a shot as planned.  

 I can’t wait until my doctor’s appointment. I really hope that this individual really will work with me rather than telling me that drugs are my only option. I aspire to have kids some day. with the symptoms I have, I don’t know that i’ll be effective as a parent. I’m afraid that the kid will have similar problems, and I wouldn’t wish that on anyone. I know there are older kids out there, whom are mostly self-sufficient, who need a loving family. I really think that I might want to adopt. or maybe foster. I want kids in my life. I just don’t know what hell pregnancy will cause my body. I’d have to get off of my medications [no, i haven’t talked to a doctor about it yet; but i do know that i’ve been asked “are you pregnant don’t take this while pregnant” about 15 times over the past 3 years when filling Zofran and Klonopin at the same time; so its an educated assumption] If I am unable to be medicated, i’ll be unable to work. I won’t be able to provide. plus theres the whole maternity leave thing. and unfortunately, i’m not independently wealthy. So there are the considerations for the time being. Any opinions and thoughts on the matter from other spoonies are welcome.

I’ll update soon.  spoons to all and to all a good day. 

[chroniclesofchronicillness-blog]

The way you treat yourself is the standard you set for others.

Unknown (via onlinecounsellingcollege)

[chroniclesofchronicillness-blog]

An introduction, of sorts

SO. I’ve come to the decision to start a blog about my chronic illness. I’m a 25 year old lady. I graduated from college a year ago, with a Bachelors of Science in Psychology. I have crazy ideas, like starting a homestead. In my younger years, I loved to write about whatever happened in my day. It kept me sane. I’ve had issues on and off with anxiety and depression since the fifth grade, possibly earlier. So it became a lot of it was charting *when* i’d have a panic attack, and trying to figure out *why* it happened. It worked, I was able to identify triggers. Fast forward 12 or so years, it dawned on me, WHY WOULDN’T A SIMILAR PROCESS WORK FOR FIBRO FUCKING MYALGIA.  I also need a quiet place to let shit fly. My boyfriend’s great. He is my biggest support and my best friend. I can see the wear that its taking on him. So in a way, this blog is for him, too. I am sure that it sucks hearing “well, my back is locked the fuck up, so I don’t think we’ll be carrying on with our regularly scheduled activities today” or “i’ve just worked 5 days in a row, I really need 2 days to crash and do nothing so I can get my shit together to go work another 5 days in a row.” ALL OF THAT BEING SAID. He knows he can’t change it, and he tends to like to fix things. My body is one thing that he just cant fix.

We also know that among the spoonie community, we’re lucky because at this point, I can still work. I struggle with a lot of the standard pain, nausea, anxiety, exhaustion,brain fog, etc. Sometimes its enough that I forget what i’m saying halfway through a sentence and I start talking about things that really have nothing to do with anything. Todays symptoms: 

I’m tired. I’m still adjusting to 600 mg of gabapentin. Oh. Did I mention that i’m REALLY sensitive to medications, and I get alllll of the side effects? 

I have pain in my back and shoulders, probably about a 6. 

i’m REALLY hungry. This seems to have been the case since i’ve started back on gabapentin 

Steps i’ve taken: 

I called a new PCP recommended to me by a guy i know through work who also has Fibromyalgia. . 

Took meds as directed

Laid on heating pad to help back

Things i’ve accomplished(so far): The boyfriend and I bought a bunch of meat on sale and forgot to freeze some of it that day. SO i cooked some of it and froze the rest. I ate breakfast/lunch.  Things I plan to do: (since its still early in the day): Go to coffee at one of my best friends(es?) houses. Her husband works from home and new baby. That kiddo had a rough start and I love him a lot.  Coffee and pizza are a good decision...right? Stay tuned for updates.