It’s the little things that make me happy right now. I felt so proud of myself today.
I spent the entire day out of bed. I even got my meals for myself…well, all except breakfast, Stuart was making that for me when I got up.
The meals I got for myself were just left overs, but I did it!
I walked by myself, and cleaned myself up…all by myself. (yes, these are things I haven’t been able to do without help.)
I filled 5 pages in my sketch pad today.
My internal clock is still way out of whack. I can’t seem to get to sleep before 3 or 4am. …and then don’t get up until about noon. If I try to get up earlier so I can go to bed earlier, it just doesn’t work. Either, I feel like crap all day, and risk having an attack because I didn’t get enough sleep. Or, I still can’t get to sleep until the wee hours of the morning. Ugh. Guess I’ll talk to my doc about it next time. I hate taking something to help me sleep, but perhaps I could take something for a little while to get my clock back on schedule.
I hope I have more days like today, and continue to feel better. It’s been a rough road lately….but I’m making my way down it.
I feel so guilty. I’ve told so many people about the success I was having after having my CSF leaks fixed. I know of a few people who sought out the treatment because of me. I’m not saying that I’ve given up, or that I think things won’t get better. But right now I’m not sure, and I’m just afraid I made it seem too easy. I think I’ve always let everyone know this is an experimental treatment. However, it was working so well for me. I was normal again. I just want for all of us who have that feeling…being normal. Did I give people false hope?
Even if this treatment ends up not working for me, I have always said, I hope they will learn something from this, and can help others.
Once again, I feel at a loss for the right words to express how I’m feeling.
I’m full of guilt, fear, and anger, yet…I’m still full of hope, and feel like I’ve found a part of me that has been missing for a long time.
I hope you guys understand.
Picnic with Ants 
Be well. Take care. I admire your strength during these times, strength not only to overcome what you have, but the strength to write so soulfully and the will to live a full and happy life. i can learn from you.
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Q – Thank you so much for the lovely thoughts. I often don’t feel I live a “full and happy” life…but I keep trying….and isn’t that what we should do? Keep traveling the journey, the best we know how.
I looked at your blogs. Your drawings are so cute!! I read some of your posts…I must say I laughed out loud at the Marketing post. still I am giggling.
I don’t know how you found me…but I’m glad you did. Your words touched me.
you may want to check out my other blog where I post most of my drawings. http://createtoheal.blogspot.com
Be well.
wendy
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I’m glad you shared this, and I’m glad I read it this morning. Your Hope is beautiful. And I’m not just talking about the drawing.
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Thinking of you my friend. I know you too have been having a rough time. Hope is a beautiful thing…try to keep it alive.
I love you…and miss you.
hugs
wendy
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It is the little things that give us hope, isn’t it?
I have a suggestion as to how to get your sleep back to a more regular pattern for you. This past winter my sleep got completely screwed up. I started falling asleep later and later. I tried to go to bed earlier but would lie awake. It got to the point that I wasn’t falling asleep till 8 or 9 am. Like you, I didn’t want to take anything. What I finally did was staying awake for an extra hour or two each day until I got back to my regular bedtime hour. It took, I think about a week and a half but I got there with less stress on my body than trying to keep going to bed early.
And now, the easier said than done part. Don’t feel guilty! You explained to people it’s an experimental treatment. If they sought out the treatment, it would have been explained, as it was to you, all the information and risks and whatever else needs to be told to the patient. Everyone is different and can react differently. You can’t be guilty about something you have no control over. What you can do is explain how it has and hasn’t been working for you and who to talk to if they are willing to also be involved in an experimental treatment.
Now that I blah, blah, blahed so early in the morning, here’s something that I hope makes you laugh.
http://bitsandpieces.us/2011/09/14/i-dont-always/
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LOL!!
I read recently in a book about sleep that suggested exactly what you said. I may try it….but a week….*sigh* You know I want a quick fix. But I’m willing to try. Last night, I broke down and took one of my husband’s Ambien around midnight….I was still awake at 4am. Don’t think meds are going to help. So tonight I should stay awake until about 6am…bet I wake up at noon….it seems no matter what time I go to sleep, I wake up at noon.
We’ll get this figured out.
Thanks for the advise on the guilt. It actually does help, coming from someone who has been following my progress, and knows what I’ve been saying.
hope you are doing well.
OH, how is your wrist/forearm? have you healed completely? or is it still giving you some grief?
wendy
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I still feel the odd twinge in the wrist and ankle but it’s pretty much healed, thanks for asking.
Relatively speaking, a week is a quick fix. But, you seem like me where the quick fix should have been so quick that the problem was fixed before we knew there was a problem. That sounds a bit like a riddle so I hope that made sense.
Something else I did while getting my sleep back on track was to try and keep having my meals around the same time. When I first started, I always had my breakfast and went to sleep after it had settled in the tummy. And if you need to take a nap, take a nap. I think the naps also helped me stay up later. I would sleep for 5 or 6 hours and take an hour or 2 hour nap in the afternoon or evening.
Something I did buy, but never took was Nytol. I was almost at my regular sleep time but the last 3 days or so I was frustrated enough to get something that I thought would help. Of course, the day I bought it was the day I fell asleep at my normal time. But only after I spent some money. The Nytol the pharmacist gave me has natural source herbal sleep aid on the box with 100 mg Valerian Root Powdered Extract as the herbal ingredient. I did ask about Melatonin but she said that is for more serious sleep disorders and is taken over a longer period of time.
Hope this helps. You’ll be back on schedule before you know it.
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Yes, I do understand.
Those little things are not little at all. The mixture of feelings, no matter the label of our diagnosis, an experience shared.
Those little things are too often mountains – but when we get that moment in time to stand at the top of even one, oh, what a view!
May this find you enjoying ever expanding views.
Peace.
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I love the analogy of the mountains. Sometimes as I climb I fall a little..but to get to a higher ground…that makes all the difference.
Peace to you.
wendy
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So just what is wrong with staying up till 3 or 4 and then sleeping till noon??? Keep in mind I’m responding as a confirmed night person forced to to keep morning person hours for my job, so I might be just a teeny bit envious. ; >) Anyway it sounds like your body might be hinting that this pattern is what it wants/needs right now. If the schedule is not too disruptive for you and your husband maybe you shouldn’t fight it. At least for a while. I’m only sayin’…
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Liz,
It wouldn’t bother me so much if I didn’t feel so darn sleepy and tired all day…then when i try to sleep I can’t.
it’s aggravating. And I’d like to be closer to my husband’s sleep schedule. I think it would make things easier.
but for now..
I’m sleeping when I can!
w
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Love you Wendy…!!!!
Remember that first and foremost your blog is by YOU and for YOU. It is an excellent way for you to be tracking your treatments and progress and perhaps to have a healthy vent now and then. If you help some of us along the way, that is great, but secondary. Please do not feel guilt for giving at least one of us hope. Guilt is a wasted emotion and hope is wonderful. Hope is the very essence of life. Be proud that you have instilled that hope in others and although you feel you are still fighting a war you have won many battles!
Hugs
Deb 🙂
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Deb,
I’m having a not so hot day today….and your comment made me feel better.
You are right, I started this blog for Me. I wanted to get some stuff out, and keep track of some things….but it turned into so much more. I’ve found such support here, that I simply haven’t found elsewhere.
Funny, my psychiatrist says the same thing..guilt is a wasted emotion…then he qualified…unless you are doing something harmful and it helps you to stop….I laughed at him.
But you are both right….I know guilt is a wasted emotion…but it sneaks up on me sometime.
I am glad that I can help some…. even one person. It makes me feel so much better. I’m the type of person who helps. Now that I’ve become so dependent, that’s hard for me. Knowing that I help anyone makes me feel more like a whole person again.
(don’t know that I’m making much sense there.)
Thank you! For saying what I needed to hear.
love to you.
wendy
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