Gurgle

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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.

Sigh.

💜

A Word on Munchausens Syndrome

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I have been reading a couple of articles on Munchausens, Munchausens by proxy, and have watched the documentary on Gypsy and her mother, and I find Munchausens Syndrome quite fascinating. I don’t understand why someone would choose to fake sick in order to gain attention. Yes, the answer must lie somewhere in the pathology of the illness, but how does the attention actually work? See, I have more than one verifiable illness and I am not drowning in pity and attention. Perhaps it’s because they don’t actually have the illness in question and have the energy to troll for it? Maybe because they usually invoke CANCER which for some reason gets everyone’s attention. I’ve never understood why cancer is held up above all other disease. It’s interesting to me. It is very serious, usually, don’t get me wrong. Maybe because we all know someone with it.

I mean, not that I want attention so much as it would be nice if people noticed the struggle and thought I was doing awesome. It’s better than being invisible.

 

Today went downhill fast.

My head is really in bad shape. My neck is awful. I didn’t sleep well last night, the pain was so distracting. I’ve been eating chocolate trying to soothe, which is a bad sign. I should curl up and either relax or sleep. My face hurts so much. I have intense abdominal cramps, and I’m spotting again or still, I’m not sure. It’s getting to the point where I can’t just wait it out much longer. I don’t know if the EDS clinic has a gynecologist on staff. There was one at the pain clinic, and I did see her privately, but it was kind of a pain to get in. My GP will not deal with this, so I’m not certain what to do. There’s always the possibility my Mirena has pierced something. Not pierced, um… shifted and embedded somewhere. I’m on a lot of medication, who knows what I feel and what I don’t? Sigh.

I need to see to a nap. I’m becoming incoherent. And grouchy.

💜

Gastroparesis Awareness

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Lovely, I was just reading a post on Twitter from the EDS Association reminding us it was Gastroparesis Awareness month. I replied I was pretty sure I had this, was awaiting diagnosis. Someone snarkily replied it was dangerous to diagnose yourself from the internet, and did I have tests scheduled. I replied I was trying, I had other priorities, which got, if you’re so sick, you should have your priorities in order. My retort was about needing my energy to bug my pain doc about my neurologist at the moment, but under normal circumstances, definitely.

It’s such a shame there are so many scammers out there we have to be suspicious of everyone. That really sucks.

I got partway into my makeup and just ran out of steam. I couldn’t go on. I’m dead. I hate using that analogy, but my lips are pale and I’m drained. I feel awful.

Anyway, back to gastroparesis. I have almost all the symptoms. It involves very slow digestion. I will eat at lunch, still be full at dinner. If you overeat, sometimes you vomit the remainder up. I am not doing this much anymore. I have a very small appetite, am constantly, well mostly, nauseated. My stomach is often bloated. Constipation, cramps, constant heartburn. I can’t think of much else.

My current diet consists of:

  • My morning coffee
  • Oatmeal for breakfast (the bad kind)
  • Homemade nachos with corn tortilla chips, melted lactose free cheese and low fat sour cream
  • glucose-fructose free iced tea
  • gluten free pizza
  • Chicken Tacos
  • Chicka Chicka Boom popcorn
  • Rice Crackers
  • Homemade hamburgers
  • Homemade hash browns
  • Chocolate (This is not necessarily FODMAP friendly)
  • Chocolate chip pancakes with syrup

 

  • I have been munching on lightly salted chips the past couple of days, as it quells the nausea. It worked during my pregnancies, my first one I lost 30 lbs! I was still 30 lbs heavier than now! 😮

This is all the food I would eat in a normal week. Other things we have in the house I can have are:

  • Lactose free ice cream
  • sorbet
  • Rice pasta with garlic and onion free sauce (gag)
  • Husband has a mini storeroom of chocolate in the basement, apparently.  For me.

I love my chocolate and popcorn, but I don’t miss my food. Since I started feeling better for the most part while on FODMAP, I don’t miss eating tons of things. I’m not often craving foods the way I used to, though I sometimes do get hungry. It takes a long time, though.

I hope I can get a gastroenterologist soon. I’m trying to think, and there just aren’t any other foods I eat. 🤔 Nope.

 

Luxury and Resting Up

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I discovered these bath salts at my favourite online shop. I’m not certain they do much actually, in terms of healing, but are they that different from Epsom salts? They are certainly lovely to lay in a bath with.

I’ve been both busy and boring. My lipstick from a big launch came in, so I played with that, but other than that, I’m not certain I have many spoons left. My body is giving signals it’s unhappy.

  • I’m exhausted most of the time, which is not unusual, but is getting worse.
  • I’m getting sores on my tongue
  • I’m craving chocolate all the time. I suspect my body is looking for quick energy.
  • My minor body aches are becoming bigger. Often I will have simple body aches that aren’t even noticeable, but lately my body is sore almost as if I have the flu or worked out too hard.
  • I’m very jumpy. Every time something falls or touches me, I jump a mile.
  • Open sores. I’m developing sores, like a line along my bust that feels like a bedsore and isn’t healing well.

So I expect to be resting this week.

I got my hair done yesterday. I will post a pic tomorrow when I’m up to it. It’s straight for now because we do a keratin treatment to help with tangles. It lasts longer if you leave it straight and don’t wet it for a bit.

I also bought a bunch of braces. Will show!

 

 

Current Mood: Exasperated

Over the weekend, I managed to get a lot of rest in and my abdominal pain is resolving. This makes me question the cyst

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Current Mood in Action

theory, although, I did have a major bout of nausea last night, which is what I was looking for. It just sseems very short. These used to last a week or so, and this was a good two to three days shorter. Now, I haven’t had one in a few years. I am getting older, that may be a factor. My Mom was 11 years older before menopause really started, she said, so I guess it’s time for peri-menopause at the least. I should likely have my hormones checked. I’m interested in what my thyroid is doing. I’m pretty sure my GP has his eye on it. This is the major problem with having illnesses. Routine, important maintenance gets pushed to the side, often with the assumption ‘someone else’ is looking after it. I have so many things I’m chasing right now it isn’t funny!

 

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Not all, of course! Ha!

Anyway, my ovary whatever seems to have resolved itself, so I’m not being attacked from the inside, but my abdominal muscles, the whole of my abdomen feels like it was removed. Remember that doll, Skipper, that was pregnant? You could take her abdomen off? That part is burning fiercely.

It feels like someone has taken a blowtorch and actually removed that part of my stomach. I have no idea why. The surgeries I’ve had in the area are gallbladder and appendix, are they enough to cause that pain? Oh and two c-sections.

Once again, I’m back to eight days from my shots. Botox for migraines and EDS. So my back is aching. My low level

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Chris O’Dowd looks so much like my husband. Back in the day. He’s neater now. 😄

headache is ramping up, and my neck is really sore. I’m back to the nausea and headache and dizziness problems I had before. When I was in so much pain and couldn’t move, I wasn’t thinking about how ill I felt. Now that I’m on less medication and am upright and have peeled away a layer of pain I can feel it. The problem is, it’s not bad enough to be debilitating,  but it sure is bad enough to make me grouchy. I’m trying to be kind, but I don’t like myself on days like this. 😦 I’m watching some comedy and staying isolated to try to help.

Almost there!

It’s supposed to rain off and on this week, and that never helps. I’m going to play with some Maybelline makeup  #igotitfree through @chickadvisor. Pretty awesome. Then, a nap!

I am not going to have the strength to talk to people I think. I won’t be able to censor myself. I snapped at my son yesterday for no reason. It’s not fair. I’m too worn out. I’m trying to catch up on blogs, but it’s all I can do to press like sometimes. I don’t get there, some days.

No, wait. I did have a reason to snap at my son. But it still wasnt fair. I asked him not to come into my area while I was trying to fix a problem and he did anyway because he is autistic, and I am in pain but trying anyway. I made a mistake and apologized. He made a mistake and apologized. Better.

Okay. Need to conserve spoons.

Stay strong, Zebra pals! 😘

New Attitude

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I’m not gonna lie, the death of Chris Cornell has hit me hard. Aside from the usual fangirling, the man was only 5 years older than I am.  His voice is just something that moves me like nothing else. I’ve been randomly bursting into tears. But it really has brought about some changes and reflection.

Honestly, everyone, absolutely everyone has baggage we can’t

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Chris Cornell 

see. So why is this world becoming so very hostile? I truly don’t understand, but I am not about to be trampled any longer.

All my life I’ve tried so hard to be wonderful, to be accepted. To have friends. To be loved and nice and well thought of. What has it gotten me? Some truly outrageous behaviour by some people. 

  • A person I went to  high school with lectured me in front of a group of people at my 20 year reunion about what a stupid mistake it had been to marry my ex-husband.
  • My mother in law tried to convince my husband to take our two kids and leave me because I was sick. She was convinced he could find someone ‘well’ to look after him, because that’s what he deserves.
  • She also refused to have my name put on the car insurance for the car they essentially gave us because she didn’t want me driving it for ‘fun’. I wanted to be able to take the kids to hospital if need be. Husband threatened to return the car. I never drove it anyway. I’ve given up driving because of my medication.
  • My ex husband offered his business associates the opportunity to have sex with me in lieu of the money he owed them. I found this out years later. I was not complicit.
  • I chose a certain woman to be matron of honour at my wedding, she told me many years on another woman was so bitter about not being chosen she complained the whole time. Why did I have to know? I was friends with the complainer for another ten years before we had an ugly breakup where she accidently sent me an email saying ugly things about me.

So, my point is, if I’m getting this treatment after trying my hardest, why am I trying so hard? This is, of course, not an exhaustive list. I don’t know why I inspire such hatred sometimes. Such loathing. My good friend’s husband still hates me 20 years after I had to drop out of their wedding. I don’t think he gets that my then husband took every dime I was making and was alienating my relatives. I couldn’t go to them. I still cry at night over that.  Why do people seem to think I’m unaware of the stupid things I’ve done? Or maybe there was good reason?

I’m sliding into a mode where I can only do for me now. I wake up. I coffee up. Med up. Breakfast. Vape. Get some makeup. Why do I makeup? Internet likes? No. But it’s fun to show my work. I like to zen out. I can relax. Be creative. And I can touch a part of myself that doesn’t hurt. My face. It takes two sometimes three hours to get my face on and photographed. Not because I’m slow, but because I need to rest so much. I lie down and get my pressure regulated or rest my hands. Then I nap. Dinner, visit with husband, bed. Meds in there, interspersed. My kids visit. They’re pretty independent. They need me, though. Don’t get me wrong.

Frankly, the way I’m feeling, I could really sleep all day. Every day. But really, that’s no fun at all.

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EDS Awareness Look

My head and neck are still bothering me, and are really ramping up, in fact. Yesterday was bad. I did a makeup look for EDS awareness month, and I was so tired after. I wanted to post to the blog, but I was going to have a quick nap. Four hours. Probably best that I didn’t. It would have been angry.

I have been wracking my mind. If your relationships are all crap, you should really look at the common denominator. That’s me. I need to change something. Everyone can’t be a jerk, right?

I do have some very loyal friends, however. Don’t think my life is bleak and terrible. Oddly enough, they almost all seem to be nurses or have chronic illnesses themselves. I am constantly amazed at my husband.

I often wonder: do I not share enough? Am I not upfront enough? Am I too retiring? Am I too pushy?

But you know what? I can’t anymore. I just need to live. I will continue to be kind, as always. Respectful, of course. But I can’t work so hard anymore. I need to focus on myself. I need to focus on me. I’m project #1 right now. Family is second. I used to worry there would be nobody to attend my funeral. I can’t anymore. I can’t worry about my afterlife when I’m not even living this one. Such as it is. It’s mine.

I need to build it.

Have a great day, fellow Zebras! 😘

Goals

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I had lofty intentions for this blog, but it seems to have devolved lately into a daily diary of my exploits. I could have said pain – but that’s just melodramatic. 😄 it’s kind of true, though.  I really do document my day to day pain at this point. I am in Survival mode, essentially.

…I started writing several hours ago. I’ve been distracted, had a nap, fielded a call from my daughter’s art teacher, (she suffers from anxiety, and has had spotty attendance this past month. He was concerned, understands, thinks she’s awesome. She endeavoured to turn in an assignment today, even though she was struggling).

As I was saying, I feel like I’m still in survival mode. I’ve had to shed most of my activities not actively related to living. This morning I felt as if I had taken a step out of the ooze. It’s great when I can add things back, like playing with makeup. Geez. Putting on makeup is something most people take for granted. For me, playing can take two or three hours for a simple face. A face most people would put on for date night. It takes me so long because I rest between steps, lie down, have to stretch.

I had to tell my mom I needed some space for a bit. I feel so responsible to her, but if I don’t get to her for a bit (Dad too, of course) I feel guilty, but I need to strip my life for a bit again. Just the basics. Making sure I get enough sleep, eating properly, taking my medicine and vitamins, bathing – which can be tough. I need to be for my family right now.

It looks like my husband needs to go for more consultation on his eye. He went to the doctor on Saturday, and the pressure was up in his left eye. The doctor wants him to see another specialist. Soon. I’m concerned. He was prescribed more drops, fully researched, for the one eye. Within two days his eye was red and angry again.

It’s kind of stressful over here. I suppose I shouldn’t be surprised if I am feeling exhausted and out of sorts. I’m trying to be responsive to and supportive of my friends, but it’s rather like I’m a flailing drunk trying to make sense of it all. My head pain has increased again, which isn’t too surprising, since I haven’t been looking after myself.

Going forward, I pledge to be gentler to myself. I will practice good self-care and remember I cannot be my best self if I am out of sorts.

My family needs me.

Besides, what ever turns out the way we expect it to, anyway?

Thanks for being here, Zebra friends! 😘