My brain…. molasses or something.

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I am in excruciating pain. My pubic bone and my back are at war. All my fingernails are squishy, so many just tore I ripped them all short. I am taking vitamins,  but I need to sleep again. I can feel the nerve block being gone. My face hurts just so much. It’s not so bad first thing when I wake up, but as the day progresses,  the pain gets worse and my spelling, vision and coordination also deteriorate.

I need to hang on to mid July. Whee! I am working on Cefaly first impressions, but this flare up, which I think was from deviating from FODMAP, actually.  I had some not gluten-free snacks. I think that is my kryptonite. One snack has molasses, and I can have 100 g with no issues. But gluten is out of bounds for me.

My memory is horrible.  I can’t concentrate on anything or think at all. Is it the pain or medication? I don’t know. I am trying so hard. You can tell it’s bad now.

Love.

In the Blink of an Eye…

It looks like this didn’t publish when I tried to publish. Sorry. Let’s attempt it now, and I am working on another post…

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My beloved Grandmother died on May 7th. It was as unexpected as you can get for someone who is 96 years old (97 In August) and isn’t terribly ill. She was an amazing lady. She was my inspiration and role model in all things. She was so tough. She never let anything slow her down.

It was my utter frustration in not being able to attend her funeral, it being in Winnipeg, that led me to send a rather nasty (Canadian nasty) note to my doctor about me having to live in darkness while my life passes me by. Well, my doctor had me in her office and was sticking needles in my face within two days.

It seems she was sending me messages through the clinic, which I was not receiving, of course, and I was doing the same. Now that we are in touch, we can bypass the stupid place and get to business.

As for the MRI, my brain is fine, no leaking, no shifting, I seem to have good old fashioned chronic migraine. The doctor has a treatment plan, a bunch of it is old stuff from the last clinic, getting me off an old medication, Botox regularly. She feels I can probably feel good some of the time.

I was doing really well before, when my treatment was regular, so we shall see.

Sitting up is so amazing, I can’t even begin to tell you.

Why do people insist on wearing perfume to a headache clinic? Why?

Love

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.

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.

 

Adjusting

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This has been a tough week. I’m trying so hard to stay positive and happy, but I just feel so awful all the time. I don’t have much time where I can sit up before I need to lie down again to relieve the symptoms. I did end up sleeping from Friday evening -our whole family was in bed by 9 on Friday, until dinnertime. And then I slept this morning until 11. I hope it helps. My back is hurting like crazy, but it is probably related to the leaky spinal fluid.

I think I’m so upset because I am afraid. I am afraid things won’t get any better and I will be stuck not only in pain, but even more useless.  I am trying to not dwell on this, but I need to get a certain amount out of my system. I am trying to appreciate the benefits of the relaxed life. There is the grand possibility I could be fine. God, I hope so.

I get very lonely. I don’t have much capacity to reach out or to be a friend right now. Online is so tough, I am often misconstrued, rightly so, I am so tired or not thinking about how my words are interpreted. I don’t get back to people, I have to run sometimes if I have to vomit or stuff. It isn’t ideal. Phone sometimes works, but my husband will work from home, and no phone for me! 😆 or my face hurts so much. But that is a possibility. 😊

I’m trying to watch funny and positive programs on tv. There are so many things on tv I missed out on! Friends was so Great! Arrested Development was amazing! Bojack Horseman is hard for me to follow, and I need to decide on what’s next. I’m enjoying this.

I started reading again. Reading was tough for a while. I’m not certain if I was too jumpy or if I can only concentrate on short stories, but I just finished an excellent book. I will tell you when I can get the title. I can’t move just now. 😜

There are plans to change my medications, consult with this doctor,  that doctor. But this all takes time. I am trying so hard to be patient. But I’m uncomfortable.

But when I look forward to my future, do I have 35 years left? 83 is a ripe old age (okay, we generally live longer in my family, but please) what am I going to accomplish in this time? This disease has already derailed my (sad) career. I cannot start anything in this condition. This blog is a major effort (of love!) Thank God I was able to have the kids I was told I would never be able to have or I’d feel like I had passed through this earth leaving nothing (ymmv). Maybe I’m just having an existential crisis all on its own. I’m prone to those. I have way too much time to think. My sister told me to “just don’t think about it” which is brilliant advice, but yeah, when you’re lying here in pain, your brain goes to dark places. It sucks. I’m working on it.

I was thinking about my friend who had told me early in the year that I needed a new doctor and the way they were going to fix me was without pills. He was right, in a way. But I don’t think I will be making the miracle recovery he expects. It’s not q-ray bracelet technology. If the blood patch works first time (unlikely) I need physio of between 3 and 5 years to be up and walking to where I would be enjoying time with my family. Not to mention getting on proper medication, etc etc.

I will be so much happier when I can at least lie down and not be hurting, you know? It’s bad.

Sending my love!