I’m not certain if I’m actually ill or if my body just quit on me. Not that dramatically, of course. I am aware it could quit to a much greater degree.
I should probably stop here and warn you this might get a bit weird and rambly, as I have spent the past couple of days on nighttime Tylenol cold and flu trying to keep my sinuses clear, because otherwise my head is killing me. I have eaten, but I should eat more. My stomach is playing a horrible game of Would You Rather? with my head: if I stay lying down, my heartburn is horrific. I breathe fire! If I sit up, my stomach is better, but my head hurts. I have fun arranging pillows and stuffed animals in various positions… as I was rambling
So, ahem, I am lying in bed watching trashy tv and eating bon bons and cold pizza, dressing in cute outfits, shopping for more, applying masks, lotions, and thoroughly enjoying it. I am prioritizing myself. Of course, I have worked up to this. Wednesday and Thursday I slept. The mask and lotioning is tbd after nap. I am so exhausted. I feel like something is going on, sinus-wise, and I have huge dark circles under my eyes. It’s quite tough to tell, because I use a CPAP and the constant air pressure keeps your sinuses in your nose fairly clear.
I am staring down one of my biggest fears. What!? I have a lot. This one happens to be: Being thought of as lazy. Even if it’s only me who knows, at least I know I did something. It’s not good for my health.
What scares me? I’m enjoying the relaxation. I’m scared that I won’t be ready for work (not real work, since im pretty sure that ship has sailed, I mean like for family and stuff) when I need to be. What if the world falls apart without me?
What if it doesn’t?
I’m going to laze around for a few more days. I’m enjoying how my breathing is so much smoother. My husband is thrilled because he thinks this is what the doctor intended. All rest, all the time.
These days it does take all my strength and concentration to get anything done. I know I’m supposed to get in touch with so many people but I don’t think I can function that way at the moment. I’m trying!
My appointment with the EDS Clinic has been moved to Thursday! Yes! This Thursday! I am so excited I can barely breathe! Prayer works! Or being on the cancellation list! Or being charming, which the administrator has mentioned twice as being a factor in choosing me and my husband when cancellations come up. Which is very flattering, because I have been feeling like a gaping asshole lately for being so selfish and me-centric. However, I have only had enough spoons to get me through.
I have been trying to remain more positive lately, as one person suggested I not dwell on the past so much. I think that’s good advice. I don’t think that I was so much, but in evaluating, I am certain I wasn’t looking too far into the future. What do I have, really, to look forward to, personally? Let’s say I live another 30 years. That takes me to 77. Let’s hope my pain remains at this level. Oh, Lord, that’s depressing as it is. My grandmother is turning 97 this year, so 77 might be a bit wishful. Ha ha.
Of course, seeing my kids grow, my husband grow in his career. Die from stress, that will all be fun, too. (Joke) It’s fraught, but there are tons of things they teach me every day. My son takes physical therapy, and they are talking of sending him, ironically, to the EDS Clinic at Sick Kids. He hasn’t been diagnosed, but a diagnosis wouldn’t surprise me. He’s 13 1/2. My daughter has Aspergers, and the anxiety component is so challenging. She is so tough. So is my boy, actually. I spend a ton of time worrying about them, and deciphering whether my husband is actually trying to insult me, or if he’s just being autistic. He has autism as well, we just found out when daughter was diagnosed, only because they are exactly alike. I know he’s never trying to insult me, he just says things how he feels them and it sometimes sounds funny in words.
I’m rambling, sorry. Excited. Tired.
Once we find out what they can do for us, the EDS Clinic, I mean, then we can branch out and fill in the gaps.
Good thing we kept the wheelchair from my appointments, whenever those were. 😜
Hi there! I’m pretty sure I am still alive, but the days and nights are blurring together, and I don’t know where I am, (ha! I’m in my bed, duh!) Or what I am doing. (Either wrapping presents or sleeping. I may be doing both.)
The past 10? days have been strange. I have been incredibly ill. I am so exhausted I don’t know which way is up. I have been existing on what my husband (I presume) has been leaving for me. Brie and crackers, mostly. They are the only things that stay down. I haven’t seen my husband much. I did force myself awake this morning to speak with him. (Plus, I creaked open one eye and he was running around in his cutest boxer briefs, yay eye candy!) I must be feeling slightly better!
I was to be seeing my cannabis doctor today, but I can’t. Short of a stretcher, I am not in any condition to be going anywhere. My prescription runs out mid-January, so I do have some time, but I need husband to be able to take me there. They have grown fond of him at work. Problematic. Now, the doctor has a remote program I may qualify for, if you’re sick enough, and if you remember last time I went I was forced to walk due to construction and sobbed through my appointment. They have also started a VIP program for $300 per year, which has something to do with remote appointments, but the info was vague, and my husband was the first to call, so… I am not thrilled about two tiered medicine. I am very thrilled we could afford $300 a year, if that is right. It goes with my husband being so beloved – and he wouldn’t have to take a full day off. He could work from home, and take just however long for the appointment. Such a relief for our family. (Yes, I am aware this makes the doctors sound sketchy, I think they are on par, frankly. Are they money hungry? Hell, yes!)
I feel terrible I haven’t seen much of my kids, but I have been getting up every morning when my alarm goes off during the week at 6 am, and weekends at 9, but I was up around 8. I have seen my daughter during the week, and my son on the weekend, so not much has changed. They’re teens. Always stuff going on. I always want to spend more time.
In Aquatic news, one of our Elder Pleco died yesterday. We are quite upset. However, downstairsn, it seems we have our second litter of bushynose pleco! We didn’t intend to have them breed, but, here they are!
I found this hilarious, I am tempted!
From my favourite advice column:
Not an Act
Prudie advises a letter writer who constantly gets questioned about her disability.
By Mallory Ortberg
DEC. 19, 2017, 8:00 AM
Mallory Ortberg, aka Dear Prudence, is online weekly to chat live with readers. An edited transcript of the chat is below. (Read Prudie’s Slate columns here. Send questions to Prudence at email@example.com.)
Readers! Ask me your questions on the voicemail of the Dear Prudence podcast. Just leave a message at 401-371-DEAR (3327), and you may hear your question answered on a future episode of the show.
Q. Not faking it: I am currently disabled. I’ve worked my way up to being up and about for an hour to two each day. Whenever I go out, people say the oddest things to me. Today, when I parked my car, a man came up and said suspiciously, “You don’t look disabled.” I said I just had surgery and rushed away. This happens almost any time I use my handicapped tag. Friends will tell me that I don’t look sick, or that I look great, and then take it personally when I say that I can’t go out for long or go to events. One of my best friends today asked if I had just tried increasing my pain tolerance. I never know how to respond, and knowing that these interactions are coming makes me anxious about leaving my apartment. What can I say to strangers who confront me about my disability, and to friends who don’t get it?
A: This will hopefully serve as a reminder to all readers that not every disability is immediately visible, and that it’s not the job of the general public to monitor people with handicapped placards for signs that they “really” need them. You don’t owe strangers a damn thing, much less an explanation, and I’m so sorry that so many people have taken it upon themselves to demand one of you. Feel enormously free to ignore them.
Getting this sort of treatment from your friends seems so much more painful. I cannot imagine why your friend would say something as amazingly stupid as, “Have you tried just feeling less pain?” That’s worth revisiting, especially since you say this person is one of your best friends. This is not something you can simply decide to ignore, and your friend should apologize for suggesting you just “get over” something like chronic pain. I hope there are people in your life who understand that you are dealing with a new reality, and who are looking for ways to demonstrate their care and support, rather than demand when you’re going to “get better.”
I am thrilled I get to miss the in-laws Christmas again this year, as I always get treated with suspicion. The first 7? Years of my disability leave my SIL would ask if I was working yet? Although, I have thouroughly explained my illness to my parents, and my Mother has asked me 3 times if I am coming up for Christmas.
I do hope you are having a wonderful holiday season if you are celebrating!
We celebrate Christmas, and I am currently trying to wrap what I can day by day. My sister is coming to visit, she has been teaching English in China, and I haven’t seen her in a couple of years. She will be here after the holiday. I have no idea when, but hey – all will be revealed.
I’m desperately trying to rest up. Taking my vitamins. Staying warm, Husband knows he will get sick as soon as he stops.
Ok. I am exhausted. That was far longer than intended, but good to share.
I have been so neglectful of keeping you updated, I really should be ashamed of myself. However, I have experienced a very disruptive two weeks, and I am merely catching up now.
Firstly, today is my 47th birthday. (Cheers, applause) I take birthdays pretty darn seriously. I always have. Partly, because it gives me an excuse for self-care, which is not something I allow myself on a regular basis, although I am getting much better. I tend to celebrate myself for a week or a month. Depending. I have never celebrated my birthday with a party as an adult. I only had a couple of parties as a kid, then we had the family parties where we celebrated everyone’s birthday that month. In my 20s, we were too poor and I was always working, then babies and now I’m eating so funny, and I can never get anyone together. The banking industry has its year-end on October 31, so most of my friends were really busy these past two weeks to a month. Including my husband. I hope he starts coming to bed before I’m on my last leg now!
Enough of that whining, Sephora started their Rouge Sale this morning, so I saved up for ages! Bought tons of goodies! Yay! Toys!
It seems my Botox kicked in on Monday sometime. So I’m feeling much better. I need to be very careful and ensure I lie down, avoid stress, eat properly, relax, rest, but as long as I take care I have a lot of improvement. I’m excited for Christmas!
It seems our son may not have autism. He was evaluated with the school psychologist, and while he presents as autistic, he is very anxious and has some serious learning disabilities we are trying to negotiate. They involve information processing and executive function. Once these are rectified, he may do just fine, and the autistic appearance will hopefully fall away. If it doesn’t, then he is autistic and we have more to work on.
Still having trouble with daughter attending school regularly. Her anxiety is just overwhelming.
So that’s what has been occupying my day to day. Both kids have needed more time from me, so I’ve been there for them. I’m tired today. Mellow. This afternoon cries for a nap.
I slept until 3:00 this afternoon. I woke to my husband stumbling into the bedroom declaring he just had a nap! This may be the first nap he has ever taken as an adult.
On Friday I was waiting for Pat McGrath’s lipstick collection to drop at noon, and at 11:45, I started vomiting. I managed to buy some lipstick, but then took a nap. Saturday, I was just as gross, and I finally figured out I may have the flu. Considering my daughter has it, and likely my husband does, and my son has been feeling awful… I just may be a genius. There’s been a nasty flu going around here, and my daughter has been having trouble since before school started. She’s either had it twice, or had an extended remix.
My mom was so sweet, she sent me some money on Friday to buy a treat to cheer myself up. From both her and dad. So sweet.
It was tough, but I had to put my Beauty Blog on hiatus until October 5th. I just don’t have the spoons to keep up with it right now. I’m so sad, because it’s one of my favourite things. I’m hoping the neurologist has a theory and I’m feeling better. I would like some answers and a plan.
When I can’t even do the small things, it’s a problem.
I need joy. To be able to supply joy. And I’m not even talking about sex. I’m so many layers below sex, you can’t even imagine. I have about ten layers to go before I even can think about sex.
On this level is bathing, reading, amusing myself, sitting up, and taking my medications. Not just staring into space.
Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.
My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.
I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.
Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.
My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.
My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.
I have been organizing and reorganizing everything I can get my hands on, because it soothes me. I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.
What I would love is some support.
I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.
I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.
Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!
In the first place, my body is being a big jerk. It won’t let me sleep at any time there is another person in this house asleep. On top of that, I’ve caught my daughter’s cold. Which isn’t a horrible one, it’s just that I’m a terrible wimp when it comes to having a sore throat. I find that pretty funny, actually. I am also suffering with yeast infections for some reason. I am having incredibly awful pelvic and back pain. If it’s not gone by morning, I’m actually going in somewhere. It’s incredible. I don’t know what is causing this. I was having terrible problems for almost eight months about two years ago. I had fungal infections all along the inside of my thighs and my under my breasts. My pharmacist recommended cranberry tablets. It was funny how I discovered this. My husband is in charge of all my medicine. He had asked the pharmacist about this problem and received this answer. I had been taking them for a while before I noticed. When I asked about them, I received an explanation, which I denounced as hogwash. Husband asked if the thrush had cleared up, to which I had to admit, yes it had. Unfortunately, I have been not so great at taking my pills, as I sleep at odd hours, missing some. I need to pay attention, get back on track.
Although, that is difficult when you’re curled in a ball whimpering.
I’ve found that around midnight, I usually start crying. It doesn’t last long, usually less than 30 seconds. I’ve never gone longer than 3 minutes. But I have had a few minutes to myself to be scared and break down before I put my face back on. The everything will be ok, face. Or maybe I sob out of self pity. I have some of those, too, I’m certain.
I can’t deny I’m stressed. My mother needs support and I can’t offer it to her. I’m likely the only one, besides her sister, she has. My husband is too overworked to give me the support I need. I ask for things, 10 minutes of his time, and it’s to the point where this is becoming problematic to schedule. Tonight, I wanted help with two rather unimportant things, I waited until bedtime at 9:00, but almost didn’t accomplish them because of all the distractions etc. He keeps telling me he answered me when he didn’t. It’s so frustrating. I know it’s not my memory, either. Sigh. 11:00. We need a better strategy.
Trouble with midnight painsomnia is I can’t vape or watch TV 🤣. Our sofa is not a place to banish people to. I can’t make it downstairs on my own, either.
I’ve been cleaning out drawers. Nesting. It’s my favourite thing to do. It’s been hard work, but I always feel better afterward.
Can I ask a question of my friends who are on the Autism Spectrum? How offensive is the term Aspie? Or Aspy? Here’s why: I have so much to talk about with my family, with three of them being on the spectrum. Daughter, diagnosed Aspergers, husband not diagnosed, but clearly on the spectrum, and my son will be diagnosed when he returns to school. I have so much to share about parenting and what living with these folks is like, I was thinking of…ugh, a third blog. Ugh. I know. But the name Three Aspies and a Zebra sounded good to me, I just didn’t want to be offensive. Open to any good name suggestions! Speaking to the blog, for example, my kids have no idea when people are joking. My daughter went to the CNE, I asked her to buy me some donuts, which are off my FODMAP plan. She’s 15, btw. She started crying because she didn’t know if I was kidding, and if she should really do it because they might hurt me, and she didn’t want to be responsible for me getting sick. She’s so sweet! 💜
My husband is snoring sweetly beside me. I want to whack him with a pillow. Nah, I know that if the kids stir or if I call out, he will be up. His beloved aquarium was acting up earlier, so he’s annoyed. He gives time to the kids, and I can’t begrudge my own kids and his source of income, as he was finishing a course for work, too.
I just can’t stop needing what I need or feeling what I feel. Here come the tears. Must be midnight. Exactly.
Ah, going to go find some cat memes. I always get melancholy when I’m sick. Boo.