I think I should start this blog with a disclaimer. Any angry remarks directed towards people is not directed towards anyone in particular. I’m just angry at the moment. I’m in a lot of pain and am just overall “stabby”. It is quite difficult to remain my normally rational self when my body is saying, “Oh. You want to be productive today? HA HA! I’m gonna fuck up your vision, put sores in your mouth so that eating is painful, boil your blood and cause you to pass out for 4 hours thus messing up your sleep schedule more than I have already and there is isn’t a bloody thing you can do about it. You’re MY bitch today!”
I am so angry right now. I haven’t been angry with my disease in a very long time. I’m at the point where I’ve lost all compassion and sympathy for others. Any time I hear someone complain about anything, I want to scream, “I’m fucking dying but you don’t hear me pissing and moaning that I had to crawl to the bathroom today, do you?!? I had a stroke when I was 30. 30! I had to relearn how to walk, talk, dress, feed myself and a bunch of other things. I had to have people wipe my ass and my own children feed me dinner! And you’re complaining about what exactly? Suck it up buttercup and get on with your life! Oh… you want me to understand what it is you are going through? Please tell me then, have you made any attempt to understand Lupus and what it is that *I* am going through? No? Then shut your hole!” But then my brain tell me, “We are all dying, sweetheart. Some of us just quicker than others.”
I am at the point where anybody wishes me well, I want to say, “Take your fucking unicorns and rainbows and bugger yourself with them! Your well wishes do not cook dinner for my children when my body has decided to knock me out for hours, when the intent was just to lie down to relieve pain in my back! Your well wished do not wash the dishes in my kitchen sink! Your well wishes do not remove all of my hair that is falling out, currently clogging my pipes, out of the bathtub drain! Your well wishes do not provide me a car or transportation to get my grocery shopping done! Your well wishes do not provide me a car or transportation to the doctor’s office so that I can get weekly injections in my ass checks and joints! All your well wishes are doing is reminding me of the fact I do not have the bloody physical supports I need right now in order to get better!”
Fuck, I am such a hag! I told you I was stabby. Because really, if I were not this ill, I would appreciate it. But truth be told, I haven’t been this ill since right before my stroke 4 years ago. And before that, when my road to diagnosis had begun and I had to stop dancing because I could no longer move any joint in my body without it feeling as if knives were being twisted and turned inside of them.
People keep telling me to take it easy and rest. It seems all I do is take it easy and rest. Yes, I keep myself busy with my websites and contributing to a few others but lately, a good part of my day is spent lying down in between times that posts are scheduled. I’m not doing a lot. I actually feel quite useless and as if I were a lame horse that should just be shot and turned into glue. I don’t like feeling this way. What I don’t like even more, is the tongue lashing my brain gives me when I feel this way. The venom above directed towards nobody in particular, I also direct at myself. I tell myself to quit feeling sorry for myself and just get the fuck on with my life because I am not a bloody victim. I’m a survivor damn it! But I am human. I would be more worried if I did not get angry from time to time.
And then I read something from one of my fellow chronic illness sufferers filled with rainbows and unicorns and “positive thinking will get you blah blah blah blah” SHUT UP! Just shut the hell up with the positive thinking stuff! I bloody well know this. Have you not read or listened to me talk. I know how to survive my disease, both mentally and physically. I get that you are trying to help but SHUT UP! Your rainbows and unicorns are invalidating my feelings. These are MY FEELINGS! Let me bloody well have them! They will pass and I will go back to being Data or Spock. Trust me on this! I’m already giving myself a hard enough time and telling myself to cram my anger up my bunghole! I don’t need you to tell me the same thing but disguise it with passive aggressive unicorn and rainbows!
Yeah, I’m angry. Irrationally, I feel as if I am failing my children, myself and my friends. I cannot be the things I think and feel I should or need to be and I have no control over it. I’ve been having to decide if I’m going to up my normal meds from 7 to 9. The extra 2 will just be temporary. But I am having to weigh “is the cure worse than the disease”. Because these two treatments require me to go to the doctor, once a week, for painful injections. These injections consists of gold salts in my ass cheeks. This bloody hurts! Because of the solution it is in, if you do not completely relax the injection site, the muscle spasms are ferocious. Once, I was afraid the needle was going to snap off because of it. And the spasms continue for hours after ward. And the other is cortisone injections into my joints. Let the 2 inch needle jabbing and digging in between the joints begin! JOY!
So aside from the pain to heap on top of the pain I’m currently experiencing, there would be added fatigue. I don’t have a car and I have no physical supports. I have to rely on public transport. And of course, it doesn’t do a straight line from my house to the doctors office. So what would be a 20 minute round trip (including doctors appointment) if I did have a vehicle, turns into a 20 minute walk (round trip) + 1 hour bus ride (round trip) + 10 minute doctor appointment + time waiting for bus to return home. These trips would require me 2 days to recover from and leave me in a lot of pain. So how am I going to cook dinner, clean and take care of two children? Do I continue with the heavy meds I am already on and hope they get the disease back under control or do I do the extra measures which will make things worse but could bring the disease back under control quicker however, they are not guaranteed to work?
I am angry. I woke up this morning feeling shitty. But as I blogged earlier, at least I had laughter. Well that was before I decided to take advantage of kid2 playing outside and lie down to relieve pain. I ended up passing out. He burst into the house as he always does, exclaiming, “Bonjour, mon ami!” I yelled, “I’m sleeping! How many times do I have to ask you to check if I am resting or not before you start yelling and wake me up!”, causing me to feel like a complete jerk! But I was so exhausted, instead of apologizing like I wanted to for being a sodding mean monster of a mother, I immediately passed back out. I awoke 4 hours later to discover it was 10 pm and the kid asleep. I hope he got himself something to eat. I feel like the worst mother on the face of the planet at this moment. I’m terrible.
I am angry. I have good reason to be angry. But why am I sitting here in tears calling myself an idiot if this is true? Why do I feel as if I have let down not only myself, but everyone around me and most importantly, my children.
I am angry. I AM ANGRY!
DIE IN A BLOODY FIRE, LUPUS!
(Ahoy, Jules.)
I just wanted to let you know that you’re one of the biggest reasons why I throw myself into things and don’t complain about them. It’s not pity, but it’s a general: “Oh, boo hoo, I have to stay at school until 9? Big freaking deal.” It’s the knowledge that a lot of the things I have are taken for granted.
“Feel better soon” doesn’t really cut this one, but I hope things get better for you soon. You are a wonderful mother and your children are blessed to have such an open and intelligent woman for a mom, even if she has her ups and downs.
<3
Jules, You have every right to get frustrated and angry, not just with your disease but, with the world in general. That said, you have never been anything but consistently positive and supportive with me, my projects and interests. You have been a good friend, offering honest insight and feedback, even when I’ve screwed up majorly. You’ve been willing to see past my many failings to my good intentions and recognize my occasional successes. I’ll regularly come up with “grand schemes” and you have always been one of the first to say, “Go! Run with that! That’s cool!” I’ve noticed. And sometimes that’s exactly the kind of validation I need to actually get something (anything) done.
So, if you need to vent, if you need to be “stabby,” go ahead. I’ll try to support, encourage and validate you as best I can. However I can, I’ve got your back, because that is how I feel you’ve been for me. The fact that we have never met just makes you all the more amazing. You are and will always be TMA in my book. Be well, stay safe and rock on!
I wish I had the money to hire you a maid service and/or a taxi/shuttle! Seriously, could we start a fund or something?? What would it take?
My answer is going to be grim but it will be an honest one. It would take a miracle and I stopped believing fairy tales when I was a small child. I appreciate the thought. And maybe if I wasn’t so overwhelmed at the moment, my response would be a different one.
I understand that you may be too overwhelmed to go there, so no worries if you can’t, but I’m literally curious about how much money it would take to buy you some relief through physical help. Like, ideally how often would having a maid come be good for you? (and I get that it might be scary to have people possibly bringing their germs in the house too!), and then how much would that cost around where you live?
And how often would you have to go for injections and how many taxi rides would that be and how much does that cost?
Is there a home meal delivery service that would bring a meal a week, and how much does that cost? Or grocery delivery? (Actually I just looked that up, for example this: http://www.bettermeals.ca/ and this: https://www.thriftyfoodsonline.com/)
Forgive me if I’m pushing! I get that even if you were not overwhelmed and felt like researching this stuff, it may only lead to further frustrations about how much things cost and not having money for it. I DO know from example of my job that just providing a few simple things like rides to grocery and doctor offices GREATLY improved the quality of life of my charge. (does your health care system provide services like this at all??) When everything is so overwhelming, getting to take something off your plate can be such a huge relief.
Again, if you’ve already done the research to know it would truly take a miracle, forgive me for being all bright-eyed and hopeful, and know that either way, I’m by no means trying to suggest that you stuff your feelings. Better out than in I say! But my practical, problem solving mind can’t help but kick in and try to come up with solutions. ha.
I have done the research. For me to get the physical support that I need would cost a minimum of 500 bux a month. It isn’t a small chunk of change. And honestly, I’ve given people opportunities to help monetarily if they wanted to.
And even if transportation for the shots was “fixed”, the pain still takes days to recover from AND there are not odds that it will work. I’ve been on this treatment before. It was stopped for a reason. But because Lupus is so bloody unpredictable, it could (HUGE MAYBE) possibly help this time. But unlike other forms of medical treatment (say like cancer) they cannot give you any type of odds. It is all educated guess work and playing Russian Roulette with meds. Right now, the slightly possible cure is looking far worse than the disease.
Thank you for trying to help, though.
Nope, that isn’t a small chunk. Glad you do know the number at least. For some reason even knowing makes it more concrete and real and possibly achievable at least in some universe, even if it’s not this one!
Yep, I guess there’s not much more to say really other than DIE IN A FIRE LUPUS!