Update: Monday Evening

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Well, that didn’t go as planned. I decided to lie down at 1:00 and begged my husband to wake me up at 5:00, so I could soak in the tub. He remembered as he woke me up at 7:00. Oh, well.

I am feeling slightly better, but the back of my head is hurting, which means likely means more snow on the way. I think I need to take it really easy this week. Whatever is going on is serious, I need pampering.

I could be getting the flu. I do get very emotional whenever I get physically ill with a virus.

I don’t think people realize how hard I work to be interesting and cheerful. It’s actually a lot of work. I spend at least two to three hours a day reading articles so I have interesting things to talk about. I think that needs to stop for a bit.

I’m going to ensure I’m up on my vitamins. Two people have mentioned vitamin D in the past week, that can’t be a coincidence.

Cutting back on my sugar again. I’m starting to mindlessly eat again. Mostly when I’m trying to keep myself awake. I should just let myself sleep and just be done with it.

So, I’m still pretty grouchy, but I’m not as dark as I was. Does this mean I’m a shade of grey? 😜 Ew.

 Beighton the best you can be!, my zebras! 😘

Dark Days

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I have never felt so dark as I have the past few days. The pain just feels never-ending. I don’t feel like there are any bright spots anymore. The tears keep falling. I know this is a temporary state, but damn, it’s no fun to go through.

I try so hard to be stoic all the time. I try to pretend I have this. It’s no problem for me to lie in bed all day every day and play on the computer. But it’s a huge problem. People don’t realize, I think, that when everyone on Facebook decides to have a shitty day, I don’t get to go outside and find other people to talk to. I’m stuck with what I’ve got.

I’m trying not to turn this into an ‘everybody is being mean to me’ because that is certainly not the case. I know I’m very sensitive right now, probably not safe for human consumption, and feeling very left behind, and I have no way of communicating this without feeling like I’m whining, because I’m in too much pain to do anything but whine.

I feel like my soul is being slowly ripped from my body. I just want this to end.

I was thinking yesterday, I would love to just have a day off. To just hand over my pain for a day. But whom would I burden with that? Oh, you know my first choice. Someone who needs to make decisions on health care reform. But is there someone else who needs to know what this is like? I couldn’t even do this to my ex-husband. I don’t particularly hate him, but sometimes, you know, I think he was kind of clueless.

My good friend is chronically ill. She’s lovely. She always says this thing, though, that interests me. When she’s talking about her pain she says, “but it’s nothing as bad as yours.”. She’s not the only one who does this. It’s so interesting to me because to me, pain is so individual. It may be that I’m a big wimp 😀. It’s almost not how much pain hurts, but how much it disables you.

My husband just interrupted me for a conversation. He is home today because he had a sleep study done last night. When he originally booked it, he thought it was the Family Day long weekend. I’m vaping as I blog, so I’m feeling better as I go. I’ve spilled my guts to him, and we’ve decided to cancel my dentist appointment for this afternoon. They are so darn good to me. They allow me to cancel and fit me in when they can. The weather is terrible. Snow and ice. I can’t get over the snow banks on a good day, but the ice? We have to try again. I really need a new bite guard.

So, my husband thinks I should medicate myself as much as I am allowed. Then take a warm bath. He will ensure I’m okay, and I don’t stop breathing. I mean, I’m not taking the same things as Michelle McNamara, but Patton Oswalt pulls at the heartstrings, ya know?

Our neighbour’s young daughter knocked on the door this morning to say ‘hi’. She informed my husband her father was at work and her mummy was at work. My husband told her he was at work (liar!) because sometimes they let him work from home, and our children were at school because it was Monday. Her eyes got big and expression was surprised. “Monday!” She repeated. He heard her grandmother start to frantically start to call for her two doors down, “Grandma, I’m visiting my friends!” She called back as she scrambled down the stairs.

Husband came up and began to tell me the story. We heard frantic banging against the door, as if someone were throwing their whole body against it. “Goodbye!” She called as he opened the door, “Grandma’s taking me to school!” As she flew down the steps and down the walk.

He also reminded me that it’s February and Valentine’s day is coming up. This may explain the rash of sudden expressions of love (or whatever) and some of the grouchiness. I can totally get that! Whether it’s being just sick of winter in general, or hating Valentine’s day, whether in or out of a relationship, February is a tough month.

Sometimes it is straight out hostility. It’s so funny, too, what people perceive about your life. I know I’ve lost at least one close friendship over jealousy of my relationship. It is incredibly sad, because I just figured it out recently. If this woman could only see my life now! I guess it seems great on paper, doting husband, two kids (who happen to be awesome), good drugs, lie around all day, play with makeup… but where does the horrible isolation fit in? The feeling everything you say is completely stupid and pitied? The aching in every part of your body every day, including your pubic bone? Doctors constantly questioning your mental state…are you depressed? You seem depressed. Of course I’m depressed you fucking nitwit! But this is temporary. This dark mood. They come and go.

Stay in the light, my mutant collagen cousins! 😘

All the Feels

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I went to bed at 6 pm last night. Why do I have all the feels today? No matter how you look at me or what you say, good or bad, it brings tears. I feel like I’m losing my mind.

I’m pretty sure I’m not losing my mind, though. I’m sure I just need a day off from the pain. Think of all the things I would do. Take a shower whilst standing up! Go to the movies, see a double feature. Go to a store! Go to a restaurant. Have sex. Do more than one in a day. What I would love more than anything is to visit my sister in Beijing or my Grandmother in Winnipeg.

Right now, I just feel like everybody hates me and I am useless. I know this isn’t true, but pain plays games with your mind. I managed to sleep through medication yesterday, so that probably doesn’t help.

My husband is being amazing, as usual. 😍

I’m going to find some comedy to cry at and stay off Facebook.

Problems posting this are not helping my self-esteem right now. 😀

Medical Treatment

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Of course, I’m not just lying in bed in pain. I’m working with doctors trying to get me to the point where I’m stable. Since we’ve been chasing ‘stable’ for 15 years, it’s quite elusive. We are defining stable as a long-term situation where I’m able to do many of the things I want to do, such as socialize two or three times a week, sit downstairs with my family on a regular basis, and not be in incredible pain when I’m at rest. Also, being intimate with my husband would be nice.

Medication

When I was first established to have a chronic pain condition, I was put on opioids. One of the features common in EDSers is they often process medications quickly. I am one. So this 4 hour medication was processed in 3 hours for me. I needed to take it 4 times per day. What I didn’t find out until years later, in speaking with a therapist, I was likely going through a mini withdrawal every three hours. The pain was better, but I developed an awful online shopping habit in order to cope. I didn’t go into huge debt or anything, but it could have been better spent.

I’m now on a cocktail of medications that work very well. I won’t go into specifics, because that’s so individual, and my husband is my main pill manager, so I probably couldn’t even tell you if I wanted to! Included are an antidepressant, known to help treat chronic pain, a longer acting opioid, I have sleeping pills to use in an emergency, and have Marijuana based pills. I have cut down my opioid intake to a third of what I was taking in the beginning, and always look to cutting it down further.

Marijuana

I take three forms of Marijuana. I’m sorry to report it isn’t as fun as it seems. I take the pill form, and of course I don’t remember the name right now. I take the oils at night. My supplier uses olive oil, so it tastes like salad dressing made with paint chips. It doesn’t linger, though. I also vape in the morning.  I vape a high CBD low THC blend, so it’s closer to the stuff they give to the kids with seizures.  Closer, but not exactly. It has a little more THC, which I find helps the pain, but it’s not enough to make me stupid. None of this medication makes me “high” or “stupid” which is nice. The only time I’m out of it is when I’m in pain.

Eating Plan

I have had a horrible year with my stomach, but over the past two years, I’ve managed to lose 100 lbs. Part of it is because I’ve been sick and had terrible stomach pain. Based on this, my gastroenterologist suggested I try a FODMAP diet plan to deal with the stomach pain. This plan isn’t cute. I didn’t believe it would work,  either. I’ve tried eating plans for endometriosis before, no luck. But this was for a month, Andrew was going to help, it wasn’t THAT different from my eating now, and my stomach really hurt…. so FODMAP entails:

  • Gluten-free
  • Lactose free
  • No garlic
  • No onions
  • No glucose fructose
  • Low fruit

The Gluten-free is because of the sugars involved, the sugars produced are off limits. And because I’m low motility, little fibre, few vegetables because of allergies. I am working with a nutritionist,  because this does look kind of bleak.

After the first month I was amazed. I felt so much better. My joints felt better. I had significantly less pain than before. Even in my fingers! I have since spoken with others who have had similar success. I need to meet with the nutritionist to see if there’s stuff I can add back. I was feeling so good, I didnt mind. I was naughty over Christmas and am paying for it. As predicted, my stomach still hurts, but the rest is not bad.  Except my back…

Botox Injections

For ten years, I’ve been getting 400 iu of Botox every ten months in my torso and thighs. I’ve been also getting it in my head for migraines for about a year, 200 iu. It has been injected various times at the Wasser Pain Clinic at Mt. Sinai in Toronto, Canada. The torso injections are known as trigger point injections, as the doctor feels around your body, and when he or she hits a tender spot, you scream, and they mark, then inject that spot. You receive about 4 injections per needle, for about 50 to 60 injections. The Botox is mixed with lidocaine,  for some immediate relief. Unfortunately, as was predicted, my back hasn’t been taking well to the last two injections, and they may not work for me much longer. I see much doctor in ten days, we shall discuss.
A couple of things about this treatment, my physiotherapist is from England and has said this treatment has not proven effective for them there. I do not know how effective it is here, either, I know it worked for me…I could be a freak. At my last visit, my doctor mentioned he couldn’t start this treatment on someone now, that no insurance would accept it.

Therapy

Doctors seem to really like to know I’m in therapy, because then they don’t have to be responsible for my ‘depression’ if I cry. I really don’t understand why so many doctors will seem surprised and uncomfortable if you shed a couple of tears when they say something really quite upsetting to you. For example, my gastroenterologist looked positively shocked tears slid down my face when he said “You’re don’t really have much of a life, do you?” We’ll, not when I’ve been desperately I’ll for the past six months, lost 40 lbs in the last 3 weeks and am tired and scared. Based on these tears he pronounced me, “Profoundly depressed,” and dismissed me. I certainly have situational depression, which is being depressed about your situation, but I’m working on it as best I can. Trying to be positive.

Braces

When I go to bed, I can be braced head to toe if I want! I have ankle braces, knee braces, wrist braces, finger braces, arm splints, a mouth guard, my CPAP machine, and my satin lined caps to protect my curls. I promise you, I look ravishing!

Vitamins

I don’t necessarily believe in so-called vitamin therapy, but I do take a series of vitamins. I take potassium, known as vitamin k, to help with some of the deficiencies that occur, based on my medication profile. I spoke to my pharmacist for this advice.i take vitamin E to help with dryness. The same reason I take flaxseed, general nutrition, and because I’m on so much medication that causes drying, it’s helping somewhat. My eye doctor even commented it’s likely helping! I take melatonin to help me stay asleep at night. I found there’s only one brand and style that helps. I take a multivitamin and vitamin D supplements, because those with EDS often have poor nutrient absorption. I take them rather haphazardly, so I don’t have too many nutrients. I had a high B12 count over the summer, am trying to watch this count, not exacerbate it. I also take a cranberry juice pill. My husband claims my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having. I wasn’t so sure, but they aren’t expensive,  and I’ve not had a problem since I’ve started, except for some slight problems under my bust during the summer (totally expected, not as bad as previous summers)

So that’s basically what I’m doing at the moment. When I’m feeling a bit better, I will add more to my agenda. Pretty soon I will let you know what I’ve tried! 😀

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