I Miss Sleep

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First, today would have been my grandmother’s 97th birthday.  She was looking forward to reaching this milestone, and mentioned it every time I spoke with her. I miss her so much.

I am still struggling with my sleep. I have not yet been to see a psychiatrist, apparently these are the only people in Canada equipped to deal with sleep issues. Night before last, I broke down and took some Zopiclone I had left over. Oh, the difference! I slept deeply, restful the whole night. My pain was slightly better, I was in a better mood, but I was still tired yesterday. I couldn’t get anything done because I still had the effect of the sleeping pill on me. Last night I slept on and off, and today I am completely useless. I can’t do a single thing as I am simply exhausted. I have tears running down my face. I’m snapping at my kids. I can’t even keep my eyes open. But I lie down to sleep, and my pain keeps me awake. I only pass out from exhaustion.  I don’t actually sleep. I am then woken up by pain. It’s been nearly a year of this. I don’t know what to do, and I don’t think my doctors seem to think this has any urgency. I am dragging myself around. I pull my things out to do something,  but I just can’t. I’m too exhausted and uncoordinated. I usually end up bursting into tears and putting it all away again. I sometimes have a good day or two here and there, but I mostly have zero energy. I feel like I’m rotting from the inside. I have constant hallucinations.

Mostly I just lie here with my eyes closed. Anything else is too much effort.

I have no idea what to do.

Hope things are better on your side!

Hugs

🦓

You Can’t Tell Me What To Do!

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I really don’t get the chance to interact with many people. It’s a huge effort for me. But your husband and kids! People exclaim. I see my kids when they drop off food, they are teens! Introverts at that. My husband arrives home from work around 7:30 and must take care of homework and lunches and clean up, so he rolls into bed around 9:00. I have an hour or so, if I managed to stay awake.

So, when I get to speak with a new person it’s pretty exciting! Unfortunately, though, some people (though their heart is in the right place, I’m sure, wanting to help) start in with the “You know what you need to do…” and it’s very rarely helpful. Now, of course I am not dismissing carefully considered suggestions, I’m not unilateral in this! What I’m talking about are the questions that could be better phrased as why questions. The ‘You need to find a new doctor’ ‘you need a housekeeper’ ‘the waiting list for neurologists is six years’  these types of unhelpful comments.

It would also be nice to be asked how I’m feeling, but we might all be pretending everything is fine.

I’m still lying here in the semi-darkness, grumbling most of the time. I feel like my life is flying by. I’ve been lying here for a year. I’m gaining weight back because I can’t move. I am having huge gastro problems. I’m so tired today, I can barely move. I’m not sleeping properly, pain is waking me up. My joints are so weak and painful I can barely do anything. I am so angry at being ignored. How much more of my life am I going to spend lying here?  I can do NOTHING right now. Even watching television is a struggle as the light and noise can only last so long.

I did buy a cervical pillow from Wal-Mart, it’s very nice. It’ helping my neck pain. I lie on it at first, after being propped up a bit and my neck hurts so much, but the next day it feels good. Less pain than usual.

I feel like if I could have a good stretch I’d be better. Momentarily, anyway…

 

After the awful van attack in Toronto,  one of the victims’ spiritual leader said she had so many loyal and beloved friends because she was a good person.  *Well* it’s really good to know where I stand. 🤔 Perhaps I should stick to Christianity over Buddhism, as it lauds suffering. 😄(Emotionally self-inflicted counts 😜).

Ugh, just occurred to me, my throat kind of hurts – I get really angsty and grouchy when getting sick. (Started to get that way around age 35. Awful.) At least it doesn’t take weeks to get over anymore.

Time for more rest.

Waiting for Results

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I had the MRI as planned last week. They had to redo a portion of it because I was moving, but I was in so much pain I couldn’t be still. My back was just so sore, being flat. Somehow this is affecting my back, and this pain is the worst pain. It almost affects me more than anything.

I played with makeup for a couple of days. It was tons of fun, but a bit of shadow kept falling in my eyes, as i had to do it lying on my back. I’m resting today. I haven’t seen my husband since yesterday morning because I have been asleep. I was awake all weekend, so I need it.

I am so weak yet so hungry. My body is gearing up for something.

I may be a bit less frequent than usual. I don’t have much energy these days. I only seem to have enough to buy scented candles. And makeup. But that’s not hard. I’m going to try going on a no buy tomorrow for the rest of the month. We shall see.

Exhausted.

Check-in

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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!

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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.

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 prudence@slate.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.

Sending lots of love and light!

Things Aren’t Happy

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This gif reminds me there is no one missing from our family. Things aren’t quite so dire. There are always people who are more in need than we are. We should remember them, at this time, and at all times. Drop someone a note. It really will make their day.

However, on to my tale of woe! 🤣 The past few days I have been sleeping. Waking occaionally to vomit. Yesterday, I was well enough to watch tv with my daughter, and had to use the washroom. Oy! Pardon the grossness, but I pooped a Christmas tree! I was vomiting, thank goodness my husband was working from home, I had my daughter rescue him from a conference call – I honestly thought it was hospital time. Now, I used to have problems with constipation.  So bad that I would have to take an injection to reverse the opiods so I could go. I was going everyday this week! I didn’t eat, though, much. So strange. I feel horrible still. I am hoping things improve. It sounds like the flu, right? Nah, just more intense version of my everyday. I’m cold, hot and I can’t stop shaking.

As for Christmas gifts, we celebrate Christmas, I have been ordering things, but I don’t remember what I bought for who or what. I haven’t maxed out my card, so we seem to be okay, but the boxes that are arriving? There’s a lot! What have I done? What do I need to wrap? Oh God help me. Next week will be brutal.

I have managed to escape the in-laws Christmas dinner. My husband has finally gotten across I’m too ill. My MIL understands, apparently, because we share symptoms. No, it doesnt bother me she’s 85. 🙄 However, she used to scream at my husband for helping me in any way. It’s best if I sit it out. It’s an hour each way. I can’t do it. My mother asked me if I was coming for Christmas. Even after I explained. They live an hour and 20 away. I wish people got this, ya know. LISTEN!

I wish I could stop obsessing about where my friends have disappeared to. I realize it’s the holidays, and I don’t expect to hear from people now, but… yeah. It’s pretty lonely here. I wish I was much more of an introvert. I need to work on this. I bought some therapy journals, and I hope they provide some distraction.

I’m working on getting some doctors working on these issues. Well, my husband is. It is not going well. I was rejected by one doctor because I have not been diagnosed with Chrohn’s disease. So new GI, go through the waiting list. I’m burping almost constantly, even water is painful to drink, and I have a huge pain the size of my fist on the right side that hurts when food moves around that bend. I’ve had it checked out gynecologically six ways, so we are confident it’s a GI thing.

This weekend, I think we try to put up the tree. I hope the minions can get it done. My kids are stuggling pretty hard with school. But they deserve privacy.

My husband actually showed them my Christmas tree poop yesterday! Part biology lesson, part ‘yes Mommy really is sick, this is evidence’ not that they doubted, but he’s so matter of fact, he just carries on! 😆 They are 15 and 13, so it wasn’t torture and they could have told him to take a flying leap. I wondered about it, but seriously, what if they were home alone with me one day and I had a fecal accident. It hasn’t happened yet, but it might. They will be a lot more prepared, and just thankful it is a normal colour!

That’s probably enough rambling from me today. Make sure you reach out to someone you love today. December can be cold and lonely.

 

Rough Time

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We ended up, finally, with a couple of inches of snow this morning. My kids, or maybe one was my husband? Were kind enough to send me photos.

I’m in agony. I was whiny yesterday? Ha ha! I tried to stay moving so I wouldn’t stiffen up. Today, I am like Frankenstein’s monster. I have nearly no fine motor skills. I crash around like a huge boar.

Something strange happened this morning. I took my medicine, the marijuana oil, and a while later I felt better. I had been lying still, but I felt dramatically better, and just a bit loopy and nauseated. Did I accidentally take my medicine twice? I feel really good. Just sick. Oops! Then I was ill, which happens so often we keep kidney bowls nearby. I just coughed up some bile. I had to use the washroom. As soon as I went to stand- oh, yes! I had the correct dose. It is very strange for me to do things out of order. But if I had doubled my dose, I could not be in THAT much pain, I am fine. So I hobbled back into bed, and finished a couple of errands I needed to do.

On days that are not so intense, I can keep moving, even if I don’t walk around much. This means my back doesn’t hurt nearly as much. On days when the pain is head to toe, though, there is just no way to deal, except to get through it and recover and piece myself together on the other side.

I am so glad my family is understanding.

My lovely cousin was stuck in town at the airport this morning, when I was at the peak of my stoned-ness, (?) Or whatever was going on there: trying to relax and not cry. She messaged me, I know she could tell I wasn’t myself. I hope I didn’t scare her!

I’m sure it will alarm at least a couple of family members to see me. Over the last three years I’ve lost 120 lbs. Mostly due to gastroparesis, but I know this will be universally ‘positive’ however losing as much as 40 lbs in 3 weeks due to vomiting is not the right way. My body just rejected food. It was horrid. I’m straightening my lovely curly hair because I lie down so much the curls just get crushed and become difficult to manage. That wheelchair we will be investing in. I’m falling so often from my knees giving out, and don’t forget that damn exhaustion!

Ah, well.  Speaking of exhaustion, I am going to have a nap, as I haven’t been sleeping well. I just got a new onesie from Torrid, it has Hello Kitty on it! Just some sleep and when the weather breaks, I need to wrap some gifts. I do this every year. I shop, forget what I buy, my husband hides everything, and when it’s wrapping time, there is a mountain of things!  Ah, its usually small stuff. My daughter’s usually a good helper.

Okay! Gotta nap this out! My lower back, oh wow! Can they do transplants yet?

I should nap…

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I don’t feel good. I don’t really feel sick, either. I’m cold and tired, uncomfortable, and out of sorts. I’m nauseated, and was sick to my stomach yesterday. My son was home sick on Tuesday, but he felt vaguely unwell. Up and around after a few hours.

So, could be the flu, or it could be a regular thing that happens where my digestive system gets wonky for a couple of days. Weird.

I’m going to isolate myself and probably nap until I feel better – likely sometime tomorrow. I will probably be less cranky. I am only cranky because I’m not going to sleep like a silly.

Anyway, I will go do that, catch you in a bit.