**this post was started on Wednesday evening, finished Thursday morning**
Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.
After my beautiful day, I hurt so terribly that night. Every muscle, and joint ached. I took a very hot bath with Epsom Salts, like my massage therapist tells me too. It helped, but then I got all woosey and dizzy when I got out of the tub. Change in temperatures was too much for my head. (I tried to do it gradually, but it didn’t work out.) Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.
The next day was an in the bed day. Just one big ache, and the tinnitus was yelling! So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.
Today, I awoke feeling better. I got up, went downstairs and started to make my own breakfast. Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.
Twice today I had an attack! However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack. They both came on fast, and we worked fast getting the meds in me. Stuart got everything prepared, but it calmed down. On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops. I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant. I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.” He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling. However, that passed, I felt alright. Then a bit later, I was oh so sick. I wonder if the “nervous” stomach was a clue? I’ll try to pay more attention to the next time that happens.
**added to post Thursday morning** I didn’t have to wait long. I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin. This attack was already in full-blown nastiness before I could move my head to get meds in me. It didn’t last long, thank goodness. And I will spare you all the details this time. One thing that continues to linger with me about it, is my headache. I slept a few hours, but my head hurts so much. I finally felt I could keep something down long to eat a little, just so I could take a pain pill. Right now, my head still hurts, and my stomach hurts….what a great way to start the day.
I don’t understand it. 3 attacks in less than 24 hours? It’s such a turn around from just a few months ago. Do I continue to try to get back to that with Dr. Gray? Or do I push for a different treatment? But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure? So many questions, and some how, I don’t think I’m going to get many straight answers. I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens. I think I’m going to get a lot of , “it’s up to you”, but I really need some advice. I hope they won’t let me down, and I really hope they will work together on this. What will I do if one suggest one treatment and the other suggest something else? *OK, my mind is officially off-line right now*
I planned to do a post on how to better prepare ourselves for the holidays. You know, trying to reduce the stress of the season. I came up with a fool-proof plan for me. I’m just not going to do it this year. Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.
I can’t go to parties right now. The noise makes enjoying myself impossible, and I feel very isolated. Since Stuart just lost his job, we can’t give presents like we normally do. We really need to be on a tight budget, who knows how long this will last. Hopefully, not long, but we need to be prepared. Plus, I simply don’t have the energy to do it this year. I’m also terrified of having an attack at someone’s party. Can you imagine?
I do think I will send out cards. I want to send some people personalized letters that explain why I’m AWOL this holiday season. Explain more about my illness, and stuff like that. I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship. (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)
I still really need to work on learning how to know when I’m doing too much. I don’t like having the fall out after a good day. My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..” What a great idea! I’ll be trying this one, as soon as I feel I can move.
I hope everyone has a wonderful holiday season. I’ve read a few articles that talk about how to make it easier on people with chronic illnesses. The biggest one is to know how to limit yourself. You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something. There are lot’s of hints, but I felt that was the biggest thing. Take your time, and enjoy yourself, don’t push yourself too hard. Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?
We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year. We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard. I hope. I really hope I don’t get depressed because I feel left out. I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too. (of course, without me there, will they really be able to have a good time??) hahahaha
Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others. This is something I really want to work on. She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things. I want to stop that, and feel joy that others have the opportunity to do things I can’t. (Thinking, this will merit its own post.)
Here’s the link to a couple of Toni’s blog post I think you might find very interesting. The first is a post about Heading off Holiday Stress, the second is How to turn Disappointment into Contentment. I think both are very useful for making the holidays easier.