**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.
Picnic with Ants 
Couple quick thoughts on your post. First of all, as far as social events, I find that it is easier to avoid basically all social events than it is to pick and choose. I have friends come over to my house to visit (and have a weekly girls’ night), so it isn’t that I’m totally isolated. Still, if I go to one event with one friend, suddenly I feel pressured (by me, mostly) to equalize things and do something with another friend. I just can’t keep it up and keep me going. So, I almost find it easier – emotionally and physically – to have a “no going to social events” policy.
Secondly, in general, I feel like I am pretty good at celebrating others’ happiness and not being envious or jealous. I definitely have my moments though. At least I usually catch myself, but it is hard. “Wait, you can read a book?” “You went out to dinner?” I find that it is the things that people take for granted that I have the hardest time with. If they are really enjoying themselves, I think it is easier for me to just be happy for them.
Hang in there.
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Allison, It’s wonderful that you know this about yourself. I’m finding a lot of pressure (probably mostly from myself) to attend social gatherings. I think part of it is, I feel I’m losing so many friends because I can’t socialize.
I really didn’t realize just how envious I was of what others were able to do until recently. Especially people who are able to do a lot of physical activities. (heck, I’m even a little envious of you, the fact that people will come to see you, that you have a girl’s night…but I’m so overjoyed that you are able to do these things!) I really do feel joy that others are able to do things I can’t, but I still have that little green monster digging into me saying how much I want to be able to do it too. I’m trying to get better….I’m working on it. Again, it’s wonderful that you are able to handle these things so well. You are an amazing person.
I’m lucky to have “met” you. wendy
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Pacing is so hard to make yourself do; I know. Here I am at the computer, trying to catch up on what folks are doing, and I know that soon the pain will send me to bed with heating pads.
Did I ask you before how you got that get widget of where folks view your blog from? I’d love to add that to mine.
Sorry you’re “under attack” from your attacks. I get daily headaches, too. Mine are mini-migraines, tension headaches, sinus headaches, positional (did something to my neck) headaches. So, I’m impressed with what you can still do with them. I use heat, sometimes meds, and laying very still in between tasks, like the laundry I’m doing now.
Take good care, and I hope the holidays don’t cause you any stress — could stress levels effect the attacks — probably a dumb, often asked question, so I apologize in advance.
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Phylor, About getting some things done…often I am in bed while doing most things, and as long as I can manage the pain somewhat, I find it helps for me to concentrate on something else. If I’m spinning, then not as much. I recently got some of Judith Westerfield’s hypnotic CD’s and I’ll listen to them while I’m doing things. You are supposed to be in a quite place and really thinking about what is being said, and sometimes I do…but I find her calming voice and the calming music helps relieve the pain. I was surprised, but today that’s what’s getting me through.
The mag widget, just click on it and it should take you to the page where you can get it. If you want to get one, look under the FAQ section to find out the best way for WordPress. it too me a while until I read that part. I find it surprising where some of my readers are from…I’m sure some are just people looking to spam, but it’s interesting.
Oh, yes, stress is a trigger. I’m trying hard to control my stress, but right now, it’s pretty deep. I’ve never noticed before that stress was this big of a trigger. Weather can be a trigger…many of the same triggers as migraines.
I’ve had a constant headache since I fractures my 7th cervical vertebra. So I understand positional headaches, I have arthritis in my neck now. And after throwing up I always get a sinus headache…killer…I know the acid got in my sinuses and just burned them, but knowing the cause, doesn’t always help.
Today migraines over came me. The first time, I’m almost positive that the vertigo attack I had was caused by the migraine and not from Meniere’s. (I didn’t have the other symptoms that I get with meniere’s.)
take care. You have really been helping me with the headache situation…I’m so sorry you have to go through it, but I’m glad you can talk to me about it and help me understand it more. Thank you. wendy
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I think it is so interesting that I had never heard of Meniere’s Disease until I ran across Dee’s blog (cominghometomyself-dot-blogspot-dot-com) and then I met you, too!! I have the constant pain, IBS, exhaustion, tinnitis, and some other stuff…but the dizziness and swirling like you get–whew! Life just shifts on a person sometimes. You never know what you might end up putting up with, right?
I am home alone almost 24/7. I am over 250 miles away from family and friends, except for my son and DIL who live up here in Fargo, too. I don’t travel well at all anymore. The last time I tried to make the trip down to Minneapolis was for my uncle’s funeral a few years ago. I was in such pain! I was nauseous and threw up and never made it to the funeral anyways.
I have been spending my holidays alone now for the past 11 years. Since I do see them regularly, my son and DIL go visiting the other sides of the families for Thanksgiving and Christmas. I guess I came to terms with the fact that I’d rather have a nice, quiet, no stress, no extra pain holiday by myself with my cat than try to make it to social parties and such. I’m the one who told my son and DIL to just worry about running around to the other sides of their family. Been there, done that for years myself.
Don’t feel badly. Don’t feel guilty. If people really do care about you, they would totally understand. They would stop by to visit you, if anything. If they don’t understand, that’s their problem. Not yours.
I keep in touch with phone calls, emails, letters, and blogging. You do what you have to do. When I finally realized that I had to put myself first and be nice to myself–life has gone as smoothly as possible, all things considered. One thing about having your body be a stress barometer, you cannot fool yourself or ignore it or put things on the back burner anymore. You have to deal with whatever it is that is causing the stress or life is worse than it needs to be. I find that is a positive thing. :):)
Best to you, sweetie!!
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Rita,
thank you for your kind comment and thoughtful words.
I checked out your Dee’s blog, I asked her what surgery she had that fixed her Meniere’s. She mentions endolymphatic fluid, so I’m wondering if it was endolymphatic shunt surgery. I had that on my right ear, but it’s not a cure all, and I have this in both ears.
Meniere’s is still on the rare disease registry, even though we hear more and more people have it. This is mainly because many people are misdiagnosed. Often, if you have a vestibular disorder, and doctor will label you with Meniere’s.
There is no one test that can tell if you have Meniere’s. It’s really more of a syndrome than a disease. The symptoms they use to diagnose it are sudden rotational vertigo, fluctuating hearing loss, tinnitus and aural fullness. And they do a lot of tests to make sure it’s not something else. Plus, they gave me a lot of vestibular testing.
I’m glad Dee has found help. There are different treatments, some work for some people, and not for others. None are a cure, but some can keep the symptoms under control for some people for a long time.
It sounds like you have a great outlook about your conditions and limitations.
You are a good role model.
thank you again for commenting,
and for giving me some valuable advice!!
wendy
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In some ways there are similarities to fibro…at least with the diagnosis being an elimination process and that people can have such a variety of symptoms and degrees of severity. Some people can still function and have basically normal lives and some are knocked right off the track completely. They may be very different syndromes, but we have pain, fear, exhaustion, and our lives being absolutely and completely taken over by our bodies in common. Learning to adapt and survive with laughter…that’s the key for me. Keep smiling!! Glad we connected, lady!! :):)
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