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.

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. 😄

Sucks to be Me

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Actually, I’m not a loser, but my body sure is.

My head and neck pain is back with a vengeance. The Botox injections I had for my migraines and body pain definitely did alleviate some of the pain I was feeling. My shots are now three weeks past due. I have not heard from the pain clinic, but my husband is in regular contact.

In addition, my back is spasming like it’s made for it. Topping things off, I’m having menstrual-type cramps like you wouldn’t believe. I’m essentially curled up in a ball most of the day.

Just like the week before my shots, I’m exhausted and sleep a lot. It’s quite defeating. I keep reminding myself the neurologist appointment is on October 2. Just over two weeks away. At least I will have a plan. I hope.

I’ve had to put my Beauty Blog on hiatus until October 5th.  It was such a tough decision to make, but I can’t provide quality at this time. I attempt to apply a face of cosmetics and I’m exhausted part way through. Ten minutes in. Add the photography, and content. I’m so exhausted. I’m so disappointed, as I really love that blog. I’m looking forward to my energy coming back.

My kids are struggling as well. I have another blog, because I have so much information for living with people with autism. Some anecdotes, some strategies, and some catastrophic challenges. Unfortunately, it’s been too much to get that started.

My daughter has either had the flu since the beginning of school, caught the flu twice, or is suffering anxiety. There has been a nasty flu going around, and I was at the ER, a great place for germs. My son has been refusing to attend classes, and been spending time in the office.

My husband, Angel that he is, has been holding everything together. He fell asleep last night with his tablet on his lap and dental floss in his mouth. Poor guy. He tries to stay up and entertain me, but 10:00 hit him hard. I managed to slip the floss out of his mouth and put his tablet away without waking him.

I’ve been sleeping most afternoons from 1 to 6 or 7 and then am up with my husband until midnight. He usually sleeps earlier. I wake up at 6 during the week and later on weekends. I’m sleeping a lot. It may be to escape the pain. I’m focusing on being right on time with my medication so I don’t have the pain build up. It really helps.

I’ve also been nesting. Any energy I have goes into organizing or reorganizing drawers in my bedroom, which is my comfortable space. I’ve bought dimmer light switches, mood lighting, decorative boxes to contain some of the clutter, a fuzzy zebra blanket, some cute file folders, and cute pencil boxes. I’m getting organized with style! Everything is within arms reach. I feel so cozy.

Even though my body is being a real jerk right now, life isn’t so bad. I’m quite happy and content, I just wish I had more energy to enjoy things more.

Hope you’re having a good day!

💜