Within the last month, I've been diagnosed with two autoimmune disorders. I'm tired, everything hurts, and my life is pure insanity right now. What are your hacks for getting what you need when life simply isn't giving them to you? What about from the ones you love?
After years and years of dealing with a doctor who refused to help me with my symptoms/complaints, I switched doctors. That doc ran some tests and, upon getting some positive results, promptly sent me to a rheumatologist. The rheumatologist spent about 30 minutes looking over all my past bloodwork and talking over/looking at my symptoms, and diagnosed me on the spot with Sjögren's syndrome. She ran a ton more tests (some of which we haven't gotten back, but most we have), and a few came back with some results which led her to further diagnose me with Hashimoto's disease. I see her again next week.
Also within the past month, I researched/interviewed/put my heart and soul into a job opportunity for which I was the 2nd choice (the top choice took the position), I recently started a heavier load of classwork at my ivy university (this is for my BA and a nonnegotiable part of my life), and on my doctor's orders, started going to the gym. All while working a full-time research position in which I have tons of responsibility, including management of undergrad employees who literally get paid the same amount as I do. My boss, who had totally innocent intentions, recently asked me in one of our lab meetings whether we should increase their pay in order to keep them interested/dedicated, and it took all of my strength to not fall into pieces at this suggestion. My life is only going to get busier/more insane as the next few years go on.
Needless to say, I'm being stretched pretty thin, and it's hurting me physically and mentally. It's been really hot the last few weeks in my city (a northeast metro). On Tuesday night it was especially hot, and at around midnight, still totally unable to fall asleep, I rolled over to look at my phone only to discover that I had blurry vision in my left eye. I was probably rightfully upset at this and woke my husband up to check if there was something wrong with/in my eye, and there wasn't. My doctor insisted that I go to an urgent eye care center the next day, and the eye doctor told me that it was due to my dry eyes (from Sjögren's).
Later that day, I asked my husband if we could compromise by keeping the window air conditioner in the bedroom on a cooler temperature at night and running the central A/C on a moderate temperature on the weekends we're home. I was fairly insistent that it was stressing me out and causing my symptoms to flare, as well as keeping me from getting much needed sleep. Since we have a budget plan for our electricity, I thought at worst it would be maybe another $10 or $20 a month overall. This sparked a huge debate that ended with him saying "No, we can't afford it", lecturing me, and him storming to the bedroom and slamming the door, leaving me to sleep on the couch (so much pain the next morning!). The very next day, he goes to the pet store because he's in the area (not for food or anything we actually need for the dog), and spends ten bucks, tweeting "I like [our dog] more than I like a $10 bill." This happened later on the same day I got the news that I also had Hashimoto's. :(
...Money is a huge issue. My medical costs have gone up a huge amount in the past year and it is undoubtedly one of the reasons my husband is on edge. However, I've tried to convince him that if we don't spend a little amount of money on things that are preventative, then we may end up spending more money on treating issues. This just one example, and most of the time I honestly don't ask for anything at all. I rarely ask for help around the house or help with dog walks. I don't even ask him for massages! I swear, I am not high maintenance at all, and I try not complain a lot when my symptoms are bad. Sometimes I say "I'm really tired" or "My hips really hurt today", but that's really the worst of it.
Fatigue, joint pain, and migraines are my worst symptoms. I'm in pain all the time. I've been trying to keep positive, but things are really getting me down lately and I start wondering if giving up is worthwhile. Obviously when I have issues like sudden blurry vision in my left eye, I miss work, sometimes even school and social stuff, and I start to feel like things are falling apart. I can't ask for more time off from work, as I'm trying to get a better position in my lab. I can't quit school because I'm useless in my field of interest unless I have *at least* a BA. I've thought about disability, but I'm only in my late 20s and I can't fathom actually taking that plunge and totally giving up on everything I've worked for. Some days I want to jump off a bridge, others I'm merely surviving, but there are definitely days where I'm happy. I love doing my job and school is really exciting, but when I have days that start at 8am and end at 9pm, and I still have to come home and make dinner, clean the dishes, walk the dog, do some laundry, take a shower, and remember to take my medicine all within a three hour time period so I can get to sleep by 11pm and wake up by 7am... I'm almost in tears writing this. I can't imagine this is sustainable.
People who have autoimmune diseases or other such things: how do you survive life? What gets you through the day? I have no one I can talk to about this. I love him, but my husband hasn't read any of the information I've given him on my autoimmune illnesses, and he's hard to talk to about this stuff. I think this is understandably stressful for him, too, and he's mostly in "avoid" mode right now. We're in therapy, so that's helping. I don't feel like it's appropriate to be sobbing/whining to my friends, and I can't even call my mother and talk about all this because the conversation inevitably turns to her searching WebMD for what autoimmune disorders SHE might have that her doctors missed. I feel so alone in this and I have no idea what to do or how to cope or even how to survive day-to-day. I'd give pretty much anything for a robot body! Can you help? What are your hacks? How do you keep your life together? Have you tried medications? My doctor mentioned Plaquenil. Has that helped you? Will I survive this? Is it going to get better? Worse? Is it worth it to make compromises and spend more on the things that will make me more comfortable? Is that just a psychological thing? Does it even matter??
On preview, I sound suicidal but I'm definitely not! I would very much like to continue living!