Revelations

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I’ve written so many editions of this blog where I have been feeling low, it is great to be feeling good for a change.

I have settled into a comfortable routine. I am up at 6 am, available for the kids as they get ready for school. I putter around until around noon. I am in bed, but I fold the blankets and put them aside so I can move around. I lie down as I need to, sometimes it’s ten minutes here and there, sometimes it’s a whole hour at a time. Between six and nine, I am definitely available for my kids, and they talk to me a lot! Once they are into their day, I am more relaxed.

After my afternoon medicine, I nap. Sometimes it’s right until 6:00 pm.  I am around for my family from when I get up (today it was 4:30) until the kids go to bed, usually by 9:00 (their choice) and then my husband and I hang out until the Sleep Monster comes for us. 10?

So, that takes care of getting enough sleep.

Other things I am focusing on:

  • Getting proper nutrition
  • I’ve been making sure I eat good food and don’t worry about weight gain
  •  Focusing on positive shows and experiences
  • Because I am stuck watching tv so much, I focus on more positive shows and not negative ones
  • Lowering stress
  • I have found some good apps to help me keep track of things, and I’m learning not to overload myself
  • Enjoying hobbies
  • Playing with makeup and crappy crafts are more important than they appear. They really help me relax. Organizing things is my kind of fun. 

So far, the results have been good. I am no longer constantly berating myself for not accomplishing more, and I’m having fun!  I still have body pain, yet it is discernable from my mood. In other words, I can be happy and in a good mood and have an aching back, and it’s been a long time since I could say that.

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!

 

So Grouchy

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I have been thinking about posting all week, I have just been so grouchy, I didn’t think it wise. Everything seems to be irritating me. I don’t like this at all. Isn’t it just like me to be irritated about being irritated? 😆

My head is sore. It hurts almost constantly. It’s bearable when I am lying down. My neck has this sharp kink where it feels as if something is sharply out of place.

I have about three to maybe four hours in the morning, where, if I’m very careful, I can sit up. I need to lie down periodically, but I can get a few things done. I can’t screw around, and when it’s time to quit, if I delay I may have to rest tomorrow, too. It’s tough, because I’m easily distracted and really clumsy.

And oh, so tired. I’m thinking it was the three hour appointment, but we are ten days past that now, I should have my strength back. But I can’t accomplish anything much.

I’m reorganizing everything I can get my hands on, which does tell how stressed I actually am.

I am trying to learn to relax, although I have no experience in it. Doctors orders. I’m also trying to watch positive shows, humour, and be generally happy. It’s helping. I mean, I know I am irrationally irritable. I’m trying to keep it to myself and not inflict it on anyone.

This pain. I do occasionally have better times. Resting is my lesson.

On the plus side, I really enjoyed Friends and Arrested Development. I was working so much when they were on, I didn’t see them. I’m not certain what’s next… Archer?

Hope you had a Happy Valentine’s day!

A Piece of the Puzzle

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I visited the neurologist yesterday. She is amazing. Just lovely. Personable. Kind. Great bedside manner. She actually cares. Or if she doesn’t, she is a great actress! 😆

My appointment was for 2:30. We got in at 3, and left at 6, after everyone else. That’s dedication. Plus, she gave me nerve blocks in my face and head. I’m so happy!

Remember how I have been whining about these headaches since March, when they started? I have been having nausea and vomiting, dizziness, and a few other symptoms that are too minute to go into. I saw my pain doc in June, who is a neurologist, asked him about going to the emergency room. He shrugged, and kind of stumbled over words. I’m not a fan of the ER either. I’ve asked each doc about going to the emergency room with my symptoms and none were enthusiastic about me going, but didn’t love me sitting home in pain, either. But every one referred me to a neurologist.  We have a definite shortage right now. I’ve been rejected by a few.

Anyway, this doc feels strongly it is Spontaneous Intracranial Hypotension. Essentially, I have spinal fluid leaking and I will need to do what is called a blood patch to fix it. I think that is a transfusion of my own blood and an epidural with it, but I was tired by then. I will have to research more.

Yes, it’s absolutely an EDS thing. Lucky me.

I do need an MRI, but the doctor said she felt my case was so strong, she felt we may not have to wait for the MRI before the patch, but she would speak to the doctor who does the procedure. He is someone I have worked with before. Highly skilled! Love him!

In the meantime, I need to be horizontal as much as possible, because it causes the least pain.

I’m going to rest now. Yesterday was a long day!

Hugs,