Sunday, February 14, 2010

Back in the Saddle Again...I Think...

Hello everyone!

I'm finally back at work. Actually, I've been back since the beginning of this month, but I just haven't had the mental strength to write a post.

The last few months have been some of the most physically exhausting and emotionally draining months I've had in a long time:

Lumbar puncture. Spinal fluid leak. Blood patch. Severe exacerbation of my CFIDS. Nonstop fevers. Nausea. Out of work on disability. Increased frequency and intensity of headaches. Chronic migraines. Insomnia. Memory problems. Epilepsy diagnosis. Out of work even longer. New medications for epilepsy. Side effects. Vulvar vestibulitis diagnosis (female problems). Medical expenses. Etc., etc., etc.

Because everything happened in such a short period of time, I started to feel sorry for myself. I just couldn't get a break! Then after the earthquake in Haiti happened, I felt guilty for feeling sorry for myself because I thought I should be grateful that I had food, water, and shelter. Instead, I felt even worse because I was feeling terrible for myself and the people of Haiti. I was having a pity party.

On the upside, I'm starting to feel better.

Physically, I've improved quite a bit since the lumbar puncture in November. My CFIDS seems to be almost back to its previous state. Of course, I'd rather it be gone altogether, but I'm glad I can function again. I'm also sleeping better, and my memory has improved. I wonder how much of my memory improvement has to do with sleeping better and how much has to do with the epilepsy medications.

I'm doing better psychologically, too. I've had some time to process all that's happened and adjust to my new normal. The improvement in my health and improved sleep have undoubtedly helped my mood. I'm physically weaker than I was before, and I'm still dealing with some unpleasant side effects from my new meds, but being back at work among people I like has done wonders for my mood. It's also given me back a sense of normalcy.

This post has taken a lot out of me, so that's all for now.

Happy Valentine's Day!


Jessica Canham said...

Hi Alyson, I was just thinking about you and wondering how you were doing. I'm glad that you're able to be back at work! I was diagnosed with Vulvar Vestibulitis a few years ago and take Effexor and use a topical compound of buffered Lidocaine in Aquaphor. I couldn't live without either one; otherwise it's excruciating pain and ache. I tell people it's as if they substituted sandpaper for toilet paper and then had someone kick them between the legs everyday a couple of times. My v. specialist said that he has many patients with VV who also have CFS. If you ever want to talk about it, feel free to email me. It's a miserable condition that you don't hear much about because of the embarrassment factor.
Take care! Glad you're feeling a little better.

upnorth said...

Wow, you have been through so much lately Alyson. I'm so glad to hear you're back in the saddle, so to speak. I hope you continue to improve and get back to at least your old normal.

It's interesting to compare pain and suffering (I say this having some similar emotions based on the situation for people in Haiti - like, "how can I feel sorry for myself when I consider what some are going through?". The fact that others suffer can help us gain perspective, but it doesn't mean that we don't suffer also.... I think we should acknowledge this and be easy on ourselves for getting down about being so ill. Who wouldn't? I try not to dwell on it, but sometime it helps to say to myself "wow, I've been through alot".

Turned around, I try not to skoff those people who get a cold or flu and complain to me. I think "they have no idea, imagine having the flu for 7 years!!!"...but then I remember that it IS suffering for them, and I should be sympathetic. Which makes me realize it's just not worth it comparing pain/suffering.

dominique said...

Alyson - I am so glad to hear that your are doing better and have even returned to work! Woo Hoo! That is awesome.

I think you deserve a pat on the back for having come through these last few months. That was challenging by anyone's standard and you did it. My hat is off to.

I hope that things continue to move upward and that your strength also gradually returns.

Happy Valentines Day!

Jo said...

You're back at work! That's amazing! I'm so glad you are OK as I was starting to wonder where you'd got to. It's been rough and you've come through - whoo hoooo! Amazing :-)

Annie said...

I just found your blog, but it's so nice to hear that someone with CFIDS is feeling better! :)

Come visit me sometime at It's Time To Get Over How Fragile You Are!

Renee said...

Hi Alyson
I am so glad you are feeling weLl enough to go back to work and have found out some answers and are getting help...You are an inspiration to us all!

Cort said...

I guess your return to health reflects progress made on the anti-seizure medications and Ambien?

I remember Dr. Cheney saying that many CFS patients were near seizure and he wished he could put them into a coma-like state for a month so their brains could rest!

Did you ever try Klonopin?

While the hidden seizures seem a bit different than most patients experience I think in the broad scheme of things they fit in quite well.

(Did you attend the CAA's lobby day a couple of years ago?)

Good luck!

Cort said...

Also - when Andrea Whittemore went off Ampligen - she started having seizures big time.

beatricemdfr said...

I wonder how the seizure stuff is related to CFS. Since I've been taking a preventive migraine medicine that also is used for seizures, I've been doing better. Except for the memory problems.

Shelli said...

Hey, Alyson -- I wanted to let you know that I nominated you for a Sugar Doll award on my blog!

alyson said...

Hi Jessica – I’m sorry you have it, too. Yeah, it’s a horrible condition in so many ways. I actually cried after my current obgyn gave me the diagnosis because my previous one basically told me it was all psychological. It’s kind of like the CFS of women’s reproductive-related issues; there are still doctors who don’t think it’s real and there is very little public knowledge. I debated for a little while whether or not to post anything about it, but I decided I should just in case it helped someone else.

Hi upnorth – Thank you so much for your post. It’s so true that it goes both ways. I really needed for someone not wrapped up in my life to tell me that it was ok that I was feeling down about all the stuff I was going through. It was also just as important for me to be reminded about giving other, normally healthy people, a break when they feel tired or sick.

Hi Dominique, Jo, Annie, and Renee – Thanks for the cheers. I am so glad to be done with those few months. I’m not back to my previous levels of functionality, but I am slowly but surely improving.

Hi Cort – Well, what initially caused the major setback was the poor reaction I had to the lumbar puncture when I was part of the Georgetown study. The anti-seizure meds and Ambien are helping my memory and sleep issues a bit. I don’t know if the anti-seizure meds are actually helping my subclinical seizures.

I have tried Klonopin (it helped me sleep), but that was before my epilepsy diagnosis. Klonopin is supposed to make absence seizures (the kind I’ve been diagnosed with) worse.

And , yes, I attended two of the CAA’s Lobby Days – the last one and the one before that (can’t remember the dates…). Were you there?

Hi beatricemdfr – I have no idea how they are related, but there does seem to be some sort of connection. It seems to back up one of the hypotheses that CFS has a strong neurological aspect.

Hi Shelli – Thanks for the nomination!

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I also feel sorry to those people in haiti as well on the people on chile. I hope you get well soon. Take care!

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