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.

 

Revelations

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I’ve written so many editions of this blog where I have been feeling low, it is great to be feeling good for a change.

I have settled into a comfortable routine. I am up at 6 am, available for the kids as they get ready for school. I putter around until around noon. I am in bed, but I fold the blankets and put them aside so I can move around. I lie down as I need to, sometimes it’s ten minutes here and there, sometimes it’s a whole hour at a time. Between six and nine, I am definitely available for my kids, and they talk to me a lot! Once they are into their day, I am more relaxed.

After my afternoon medicine, I nap. Sometimes it’s right until 6:00 pm.  I am around for my family from when I get up (today it was 4:30) until the kids go to bed, usually by 9:00 (their choice) and then my husband and I hang out until the Sleep Monster comes for us. 10?

So, that takes care of getting enough sleep.

Other things I am focusing on:

  • Getting proper nutrition
  • I’ve been making sure I eat good food and don’t worry about weight gain
  •  Focusing on positive shows and experiences
  • Because I am stuck watching tv so much, I focus on more positive shows and not negative ones
  • Lowering stress
  • I have found some good apps to help me keep track of things, and I’m learning not to overload myself
  • Enjoying hobbies
  • Playing with makeup and crappy crafts are more important than they appear. They really help me relax. Organizing things is my kind of fun. 

So far, the results have been good. I am no longer constantly berating myself for not accomplishing more, and I’m having fun!  I still have body pain, yet it is discernable from my mood. In other words, I can be happy and in a good mood and have an aching back, and it’s been a long time since I could say that.

Mid Break Update

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I am really feeling better. I have taken a giant step back, I feel. I am streamlining my life.

I have divested myself of my Beauty blog. That was difficult. I’m disappointed. I enoyed that so much. I don’t know that it was hugely popular, but I enjoyed it. The commitment was too much, however. I will still continue to play with makeup. It is excellent therapy. It keeps my hands nimble, keeps me moving and motivated. I have a reason to sit up straight for a while, although I can lie down and apply makeup!

I’v pared down my Facebook friends list. I was originally going to delete everyone, and keep my account only as an identifier to log on to websites, but as I was deleting people, there were some who… well, I just couldn’t get rid of right away. I thought I would do two phases. Then, I decided to live with the smaller list for a few days. I like it. So far, it might be the level of socializing I need. Unfortunately, in my haste, I know I let some people go, people I probably shouldn’t have. I can’t remember everyone, though. I do hope they will be back.

After the US election last year, I added tons of friends, thinking there would be opportunities to make some great friendships. I did make some friends. But I overestimated my ability to actively participate in friendship. It’s also interesting to see who had left long ago.  But I think this was a mistake, overall. As social and gung-ho as I sometimes feel, I sometimes don’t take the time to guard my emotions or protect myself from potential toxic friendships. I need to be more vigilant.

I feel like I have been doing a lot of things in the wrong way lately. Perhaps pushing things too hard when I should be letting go. I’ve been complaining and feeling that I have no friends, but I do, and I have. I couldn’t see them for the riff-raff. It’s embarrassing to admit, but I would be disingenuous if I didn’t. I think, however, those who have been in acute pain for any length of time will understand, at least, how I may have been feeling.

I’m feeling far more zen. Focusing on myself. My family. Becoming well within myself. Banishing negativity. It is hard, because my body is going through hell, but I know it’s for the best.

I’m decorating my space with pretty things. I’m organizing everything I can get my hands on.  It’s one of my favourite things.

The muscles in my back have been killing me, partly from getting rid of stress, partly from overdoing it. My head still hurts. I have almost constant migraines and facial pain, but I try to not think about it. Keeping up with the medications help.

Another issue is that I am bad at taking my medication. I am now committed to taking my full dose at proper times, and it’s helping a lot. I know I am being stupid about this, but I lost a bunch of friends on a message board when someone decided I was a drug addict for taking my medication (it was the wrong type at the time, not a good fit, I was going through a nightmare on this stuff, so I really wasn’t great at defending myself) and it’s affected me. I am working on this.

My kids are really struggling. I am trying to be more present for them. My son does not, in fact, have Autism, but a series of learning disabilities. My daughter, does have Autism. Both have anxiety disorders. Brilliant kids, struggle to leave the house.

Be well, see you on the first!

Birthday Weekend Festivities!

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I had a quiet weekend. My husband wasn’t feeling well, and is currently lying beside me trying to rest in the middle of the day.  Something he is lousy at. The darling got up after I fell asleep on Thursday and made me a FODMAP friendly cake. It was delicious. I think there is some left. Very moist.

I also received a lovely crystal bunny. It’s called Rabbit with Roses. My husband has been buying me Swarovski necklaces for years. I also collect rabbits. My son also points out there are three roses and three people in the family. ❤

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I spent most of the weekend puttering around cleaning out drawers and sorting my makeup so it’s accessible and neat. Not everyone’s idea of a good time, but one of my favourite things to do. I do think I overdid it a bit, as I woke up this morning a bit sore, but as my husband was taking his temperature, so did I. I’m running a slight fever, so I must have caught something going around here. We need to make time for our flu shots this year. Unfortunately my husband’s year end is October 31, so he’s very stressed.

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As I was cleaning out my dresser, I found this little guy! A Zebra bunny! I collect bunnies, and I collect zebra things, because of EDS. 😊

I received so many birthday wishes this weekend. It was nice. A bit overwhelming! I’m not used to so many people! I got in touch with most people, I think I got everyone. There are a few people I still want to talk to, though.

I called my Grandma yesterday and had a nice long chat. So great. I miss her.

Christmas is already becoming an issue. I’m glad my husband has my back. My in-laws have a separate celebration so the families don’ t have to choose which family to see. My in-laws live an hour away, and last year they hosted and everyone went to a restaurant. I didn’t attend as I was ill. This year, my mother in law was lamenting my absence and was trying to make plans to ensure I could be there. My husband explained there was only a slim chance I could attend if it was in my own house, never mind making plans for me. And she is in her eighties and having trouble with stairs, so she’ s sacrificing a lot. With my head, even though it’s better than it was, I just don’t think the stress of the holidays is going to help it. Plus weather exacerbates the problem.

Next door has construction going on, which is one thing with the intermittent hammering, but then they’re blasting a television set and then drums? Am I in a psychological experiment? 😂😂😂 Duh, I think they are setting up sound equipment.

💜

Good News! I’m alive!

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Well, I suppose that depends on your perspective, but I’m happy I’m starting to feel human again. 🤣 I believe sleeping so much yesterday helped a lot. Usually sleeping so much doesn’t do much to tackle the exhaustion. Things are different when we are dealing with the flu.

It’s funny to me it takes so long to figure out when I have a flu bug or something. I get to feeling worse and worse, and my brain gets less able to figure out what is going on. Being nauseated and tired all the time is nothing new. Dizziness is standard. Flare-up happen. Headaches are constant. At least now I feel like I have one flu instead of two. And why do I get sores on my tongue every time I get sick now? Do not like. (When my daughter was a baby she used to say “Do not like it -push” 😂 she’s so funny).

Two weeks to neurologist appointment. I’m hanging in there. I’m hanging a lot on this. I know this is very dangerous, but it’s all I’ve got.

I am going to shop for some supplies. I am going to look for some aromatherapy supplies. I still have horrific menstrual cramps. Year’s ago a combination of bergamot and ylang ylang in oil massaged on my abdomen used to help. If you try this, it is not safe for pregnant women, because it can cause uterine cramping. I want to find some support pillows, and something to help me apply lotion when my husband and chief lotion-spreader isnt around.  Or is sleeping. 😊

I have new boxes to get organized, so I’m going to do just a tiny bit of that while I have the spoons and need to lie down again. Ten minutes?  I love making my nest cozy. Then I’m going to watch episode 2 of AHS:Cult. I’m so afraid of clowns! 🤡 Even before it was trendy! Maybe this week I can catch up on OITNB and Kimmy Schmidt, too. I’m even thinking of picking up a book. I feel centred enough to try.

I hope you’re doing well!

💜

PS, I felt like a real Zebra the other day! I was doing something where I put my arms out or something, and my son freaked out and asked if I was turning my arm upside down because it looked freaky. My arms are pretty normal, as Zebra arms go, but it made me laugh. 😄

Why do People Gotta be so Mean?

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WARNING: MAY BE A BIT RAMBLY AND DISJOINTED. STILL NOT AT 100% MAKING SENSE. STILL FLUISH.

It’s Monday afternoon and I’m on my way to feeling human once again.  Somewhat. I am fairly sure it will take a few weeks before I am completely back and feeling whole, as it sometimes does with colds. It’s funny, it’s not always the really heavy colds, either. This one I had a light sore throat, but I was so tired, and those sores on my tongue came back. They seem to come back now the second I get run down. They are terrible. I can’t have more barriers to eating!

Yesterday was my husband’s 49th birthday. He looks much younger. He was asked last fall to join an under 30 kickboxing club. 😂 He declined.  The family finally got me to move at about 4 in the afternoon. I was still very weak, but I hung out, still in bed, because I’m always in bed, tried to be a good sport, and tried some food. My husband had made some FODMAP friendly brownies, so I had a couple. He eventually made me a smoothie, which I spilled all over myself. Yay! I’m just waiting to take a bath.

My head is really hurting today. It never ends. It’s nice my brain decided to ease up while the rest was acting up. Or I didn’t notice it.

The hospital hasn’t called back, and it’s long past 48 hours, so I assume we aren’t dealing with an infection. So, it looks like I have to face facts and will likely have to find a new GYN. I love mine, but she isn’t available enough to me, and did not return my husband’s call. Can’t work with that. I don’t have the energy.

So, I can’t remember if I mentioned this, but I’m too weak to check, as we were leaving the exam room, we walked by the patient at the nurses station on a stretcher. Obviously, I was in a room because of the examination that needed to be done. The patients partner was sitting crossways across the bed and my husband walks past, holding my hand, I’m clutching my stomach, and she stretches her legs out and tries to kick me in the knee. She just barely makes contact, though, short-legs-having-bitch. Why?

Then I get out to the waiting room, I had to make sure I didn’t hallucinate this one. This woman was sitting in the waiting room, and it was about half full. My husband found the closest chair and dumped me on it, and this woman was sitting across from me. Husband goes to get a cab, and she goes “Ha ha” and I assume she’s looking at her phone, but she’s staring me down. I just put my head in my hands. She may have taken a photo, because she had her camera out and in position, but that didn’t occur to me until later. 6 mg of morphine, remember. I did not fall asleep! But I did get somewhat stupid. I remembered what happened, but it took me a while to parse it. She looked so normal! Then this guy came out that ahe was with, and he did not look, uh, well. I appreciate a man who works with his hands, but this man looked like he worked with his face! Wow! I don’t know the relationship, but the age difference looked huge! I’m biased, because my ex was older and it was bad. Strange people everywhere.

I don’t understand deliberately trying to hurt someone. And on that note, a big shout out to twiggyjen44 whom I may have been inadvertently ornery with in my cold/pain/drug induced haze. I am very sorry if I was snarky. Thank you for your help and advice! 💜

Over this next week I’m going to work on recovering my strength before making any decisions. I seem to have had one round of bleeding that has stopped. Perhaps my lining had just built up enough that it needed to slough. We have moved my cranberry pill to the morning, so that should help with any chronic yeast problems.

Oh! Yes! When the nurse was inserting the iv into my hand, she really crammed it into the back of my hand. I heard it pop when it entered my vein. That has never happened before.  But I have the teeniest of yellow bruises. I am one Zebra who doesn’t bruise! And another thing, my body should be stretched out from being fat, but it snapped back! Reverse elasticity? 🤣 I think my skin just isn’t very involved.

Another thing at the hospital, while I had my blood drawn, this woman came in, she was in her large 60s, she approached the triage nurse. Patient explained she was at the ER and the doctor wanted her to come back for a follow up test. Triage nurse explained patient had to go to her GP. Patient claims the doctor told her to come back here. Triage nurse tried not to roll her eyes and started to ask the patient questions. Which start to go in circles. We go through this whole routine three times, at which point the patient decides she wants to come back tomorrow, and tries to book an appointment. All the nurses were listening in by the end, trying not to either laugh in sympathy or strangle the patient.

When I was still waiting in the hall, one lady jumped up because her partner was getting worse, they were worried about his heart. She bashed into my stretcher, which hurt so much, and surprised me, I felt so bad for calling out, but I couldn’t help it. She apologised, but her mind was elsewhere, of course. Goodness. I’m such a jerk when I don’t mean to be. It’s good I don’t go out much! 🙊

I must admit, though, even though I had to spell Ehlers Danlos for them, I did get treated awesomely. Adequate pain management, no drug seeking questioning (it does help to go to the hospital that does administrate my pain management), thinking ahead so I didn’t have to move too much, all in all, the staff was very considerate.

Okay, I’m going to go find someone to monitor my bath. I fell a couple of weeks ago, and I like to have someone keep an ear out for giant splashes or thuds.

💜