The Next Day

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My husband evaluated the situation yesterday, I just love his logical Self! ( please allow me this apology. My predictive text is really obnoxious, and I can’t fight with it today. I simply cannot. I am so sorry for the weird capitals, or not, or apostrophes they insist upon)

So, my husband and I went over what I had taken, what I had, and came up with a good mix. Within about 20 minutes I was much more comfortable, and even a bit loopy from finally being out of pain. (Which is different from being stoned, because it all really hadn’t kicked in yet.) I was still well within my range of my prescriptions, which is awesome. There is this magic cream the doc prescribed that really numbs things up. It’s lovely, and I always forget about it.

After the lovely medicine started to kick in, the most embarrssing thing happened! I picked up my tablet and started to read, as I often bookmark things for myself this way, and the blog I was reading… I thought ‘This poor woman!’ Oh, Lord! It was my own blog I’d just published! I did notice after a couple of sentences. I  need to reign in the pity party. 😆

So, my bath was gorgeous.  Fantastic. I loathe getting out of the bath, as I am always so cold. But. I survived. Hair washed. Slept amazingly well. It was tough, but I fought to stay awake yesterday, so there would be a full night last night.

This morning I received a call for my MRI. It is on Thursday.

I am still very tired today. I’m cold. Sleepy. My back is intensely sore. I think I should focus on rehydrating myself. Staying warm.

I thought I’d play with makeup today, but maybe later. Or tomorrow…

Priority has to be maintaining good function first.

It is amazing to me how dumb I have been, distracting myself from all the stupid important stuff going on with my body, because it’s scary and intense with all of the unimportant minutiae because it’s easier and self-perpetuating. It’s time to human up.

Stay snuggly, my friends!

Letting Go

 

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I’m likely having a flare-up. At least I assume that’s what is going on. My brains are currently pretty scrambled. The pain is pretty intense at the moment, and the pain medication is taking the edge off, but not much more. I continue to take it, don’t want to deal with withdrawal or anything, but it doesn’t really make much of a difference.

Sorry, bit of a pause there, my husband came upstairs after his weekly call with his parents to check on me, and I got some medication and rub. That was nice. I’m slightly more comfortable, but not too much. At least my neck feels not quite as sharp.

Husband and I had quite a row yesterday. No. Wait. I had a tantrum. That’s better. I’m not doing well with accepting that I need as much help as I do. He is a bit overwhelmed with his own duties and obligations and didn’t see that I had not eaten and had missed my medications too long. Yesterday morning I was trying to take my morning pills, but I kept dozing off from pain and sleepiness. I’m usually pretty vocal about my needs, so he doesn’t always babysit me. It blew over quickly, though. We spoke honestly with the kids about how we did things badly. But this was the outcome. I spoke about my trouble accepting help, but I really need it right now. It wasn’t positive, but I think we moved on in a positive way.

So that help thing. We don’t have any help in the community at all. Besides professionals, we just don’t have anyone we can rely on. It’s just the four of us. As I’ve mentioned, our kids have learning disabilities. Our daughter, Aspergers, our son, a processing disorder.  Both of them are in counselling and support twice a week, and have severe anxiety issues. I feel really awful asking for anything from my husband! Although he gives so freely!

Anyway, I realize I just need to trust he will tell me when he has had enough. I have gone two weeks without a proper bath and I just need to suck it up and do it at midnight if we must. Despite our daughter, newly minted 16, shushing us for being too loud at 8:30 last night, Saturday. We are a party crowd.

The luxury of sitting up has been whittled to a few minutes at a time. The nausea and back pain is ever present. I realize now I must let go of a lot of things I may have wanted for myself coming up. I really need to focus on myself right now. This is not something that comes easily to me. Sure, I can do face masks and things, but to really rest without distraction is tough.

I need to let go of worrying about what people think about me. So much of my life I was taught that other people’s opinions were paramount, and it is my duty to micromanage those opinions. No wonder I’m so tired! There are certainly a lot of people who dislike me, I think more than the average person, but I need to just stop trying to dissect what is wrong with me and live my life. I need to chalk it up to being a psycho magnet, as we used to call it back in the day, I know I am very naieve and have made some very bad choices in friendship, and I know a few enemies were made due to people ascribing me stories or characteristics which don’t belong to me at all. Many along the way seem to have this idea I’ve lived a perfect life. I’m some rich kid. Ha! Bizarre. Anyway, I really do need to stop looking back at my life from others’ perspective because it doesn’t serve any purpose, but damn, it’s fascinating.

I need  to accept help. I need to stop with the caretaking. Do you know I was actually thinking of posting on Facebook that it would be okay to unfriend me, it wouldn’t hurt my feelings? I mean, people are kind of acting like I run around and punch them in my sleep, or make horrific posts…wait, I should go check that. I won’t share my health updates. I guess. Maybe. I dunno. I’m just back using it again.

I’m thinking I may play with makeup lying down one day. We shall see how that goes.

My son came into my bed this morning after my husband got up at 6. It was lovely. He had me so relaxed just by wrapping himself in his blanket beside me, putting his face close to mine, and stroking my cheek – I fell asleep! I love that boy! (My girl just as much!)

Ok, perhaps a warm bath would be good. I don’t know. I’m still so uncomfortable. It’s not quite sharp pain, I feel like I’m being squeezed by a boa constrictor. From my cheekbones to my hips. I need to relax, but I don’t know how. God, I think I may have to go to the hospital if this doesn’t let up somehow, or I find something that helps. I’m at least calling the doc tomorrow. Or having my husband do it. Ugh, having indigestion does not help.

Oh, sitting up feels so much better.

I will keep you posted.

 

Sick? Well, I Feel Sick.

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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!

Hugs.

I’m falling asleep…🙁

Great News!

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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. 😜

At The Bottom, Looking Up.

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I’m trying to stay positive. I want to be positive. But my body is revolting (joke). I have never been in this much pain before. If you remember, I haven’t had any Botox injections in my body since last June. This was a treatment I had been having for 11 years, every 10 weeks. I have also only had one migraine Botox treatment since then, October. So no relief from the neck and head pain or migraine pain since then.

My sleep is terribly fractured. Pain keeps waking me up. My current doctors don’t feel qualified to prescribe what they feel I need to help with this. I did sleep for 24 hours Friday to Saturday, so that was amazing. I did have to take a bunch of medication, still within my prescribed plan, to get there.

There’s a bunch more, but it’s a bore. The meniscus in my knees have gone. I would love to watch me walk as I dash to the washroom, because they are popping in and out like crazy. It must be hilarious.

The point is that I will be incredibly fresh when I get to the EDS Clinic next month. I will have had no treatment since October, just my meds.

I’m like a goldfish right now. I try to keep thoughts in my head, watch upbeat shows, save my energy for my husband and kids. I cry much of the time. I don’t even realize it, but the tears are there. Pain. Exhaustion. I don’t want to sleep through life! My kids seem to be doing quite all right for the moment! It’s really new, so I am crossing my fingers.

I play with makeup a lot. Although it will take me 3 to 4 hours what should really take 45 minutes. Distracted by tv, Looking for stuff, what was I doing?, oh yeah, that brush…

One of the scariest things is that I’m getting pins and needles down my arms. I can’t feel my fingers that much anymore, my fingers are all cracking and cramping. They become more and more useless. I have to figure it out, but I never have the strength to. Or I never remember when I’m at that moment. Grrr! I even keep a notpad to write things down, but I haven’t captured it yet.

My husband is being wonderful, as usual. He has been baking gluten-free brownies every week so I can have them with my evening medicine. My gynecologist put me back on Visanne so maybe we can stop some of the cramping. Yay! Acne and weight gain! I’ve put on 10 and taken off 2. I had been hitting the chocolate pretty hard over Christmas.

Anyway, I’m getting pretty tired. Hugs to everyone going through same or similar. When I don’t have energy for makeup, I have been making some crappy crafts by covering old containers with duck tape. The decorative stuff they have out now.  I will try and take a photo of some projects if I can. They aren’t gorgeous, but they keep my hands moving. It’s something to focus on, other than what’s hurting now. It’s good.

Sorry, I’m Late… Too Mellow…

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I know I said I would be back yesterday, but I have been dealing with a flare-up and have been sleeping up to 18 hours a day. If I am not sleeping,  I just lie there, curled in a ball. My husband tries to wake me, but he can’t when he gets home. Consequently, I haven’t had a bath in two weeks. A proper one, anyway. I’ve been washing in the sink. And using wipes. To think that is all some people can do! Today I will bathe properly!

I’ve finally smartened up and am taking the full course of meds available to me. I don’t care how loopy I get. I’ve asked my husband to force my medicine into me, not just try to wake me.  The distinction is important.

The reason I can’t bathe is I am not comfortable without my husband being here to get me out of the tub. I have fallen a couple of times, and the kids aren’t equipped to help if I am unstable at all. I keep thinking I will do it tonight, but then… oh well. My teens smell worse.

I have spent the last two weeks really regenerating. I did a lot of good things, some stupid. First thing I did was end my Beauty Blog.  That was a tough, but obvious decision. I just can’t keep up with the deadlines I put on for myself. I can’t even scroll through Instagram right now! So, once I ended that, at least the guilt and pressure was off. You can keep up with me on Instagram, which I do update regularly @squidgeaboo. If I am ever strong enough, I would love to do the Beauty Blog again, but I think things would look different. It would depend on my health at the time, of course.

Next, I deleted Facebook Messenger. I think that was a mistake, one I will rectify once I am done this post, but it made sense when combined with my original plan. I was going to originally delete Facebook entirely, but then I remembered how useful it is as a sign-on device. I then decided to delete all my friends. Remember, I was pretty close to total mental collapse, here! Or emotional. As I started deleting, there were some I just couldn’t. (Now, I had added a ton of people after the US elections last year. I was hoping to become more engaged, but it didn’t work well. I made some wonderful friends, so it wasn’t a loss. However, there were many people I didn’t engage with and didn’t recognize.) I know there are good people who got caught up in my zeal, and some in my clumsy fingers, and even a few in my original mandate! I had intended to go back and do a second wave later, but looking at my new feed, I could see all my old friends. I could chat with people I remembered. They were there all along.

Perhaps Facebook enagement is what I need. Perhaps that is what I can handle. I do hope people can forgive me. Although I don’t know if I should draw attention to my boneheadedness and apologize or just do better from here on in.

I’m still playing with makeup when I can. The exhaustion doesn’t help, but it’s important to stay flexible and keep my fingers working with dexterity. Crochet is out, so makeup is in. I asked my husband for a couple of craft supplies and he spent hundreds of dollars on duck tape, the fancy kind, and glue, papers, mats, exacto knives, etc. I’m in heaven! Don’t worry, I promise not to sell you any crappy crafts! 😂

The other project I am working on is organizing my house. Well, everything I can reach. The other three members of my family have executive function issues, meaning they aren’t great at the higher levels of care, such as throwing out empty bottles of shampoo, etc. Being organized means everything is in a pile. I have been out of commission for ages, so it’s time to organize and dispose of everything we don’t need. It is going to take ages, as I can only do a bit at a time. The rest of the time, I stare at whatever is on TV. I sat through an Extreme Couponing Marathon. Fascinating. My brain can’t comprehend anything complicated. Just staring at the pretty pictures!

Anyway, organizing! Started with the bathroom… now for my too-big clothes! But the socks go first! Anything uncomfortable…gone! How many pair do I need? 😂 Maximum 5. If I go out 7 days in a row, I can either wear fuzzy bed socks or my worn ones twice…

P.S. I should note that my husband has done an excellent job of things over the years: Our house is not exactly a craphole, except for the fact that our kids spread out everything they own in order to see it. He hasn’t gotten rid of some of the other stuff, though, like the shampoo I didn’t like, or the razors I don’t use anymore, or weed out the facecloths that are paper thin. He does think we need new bath towels! He’s taken all my clothes that don’t fit to the basement. I want them gone. That sort of thing. Big Purge. 😈

16 Years!

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It’s hard to believe, but we were married 16 years ago today! We still seem to like each other! 🤣 I know I like him, anyway!

He really is everything to me. He is everything fun in my life. We met on Halloween, 19 years ago. I feel both like I’ve known him forever, and I met him yesterday. Do you know what it’s like when you meet someone destined to be your family? He is my family. We do have two babies. Well, I was pregnant with one of those babies when we got married. I was told I couldn’t conceive, and we should start trying, so we could begin IVF right after the wedding…

Tonight will be a quiet night at home. He is exhausted, I am essentially bedridden, due to my chronic illness. That’s okay, we are homebodies. Restaurants are out, he has potentially fatal allergies, as do I. I have gastroparesis and the FODMAP diet makes eating out complicated.

He is exhausted from work, and I’m pretty hopped up on drugs due to my neck and head hurting so much. Although, Monday I’m going for migraine BOTOX injections. I am to talk to this doc about a neurologist. I’m starting to have fantasies about kidnapping a neurologist, forcing them to treat me, so something needs to happen soon.

Have a great evening!