Wednesday, February 29, 2012

Ok. here goes. I'll try to be brief. Lyme Brain strikes again. This is not to gather sympathy or anything, just a statement of facts and not knowing how to go ahead for the immediate future. Actually, I don't even know where to start so will just stumble on. And maybe my tale helps someone else on this hellish journey of getting rid of Chronic Lyme Disease. [Incidentally, why do we give it the "honour" of writing the words with capitals???]

Some friends know that I've mentioned about screwing up things - burning food, forgetting pots on the stove, not defrosting or cooking things properly, messing up recipes I've done for decades which were in my brain without thinking. Hubby would tell me I'm asking the same question several times; I can't follow certain movies or programs, and am scatter-brained where I was focused before. Hence, checking and double-checking everything, especially for my jobs (two different ones). I find it extremely hard to retain new information and to make things "stick" between reading and doing without checking back several times. And even then still mess up more times than not. I'm aware of some of these things if people tell me, other times I'm blissfully unaware. Makes me crazy to think I've checked something and then there are still mistakes. Major ones. 

The doctor in the States who is treating me, is trying to bathe my brain in Vit. B to regain some functions and creating more neuro-paths. I thought things were improving; I felt brighter, but still trouble with the things as listed above. Can't tell jokes any more, for one thing, which was always part of me. I don't know if I'll ever recover all that was lost. The pain is nothing - that goes with the damaged and dead nerve endings in the brain and elsewhere in the ole bod.

So, I've just had a meeting with my overseer. It seems on Sunday there were major issues with the overhead slideshow I'm supposed to do for the congregation. I create printed bulletins (or order or service, or programs) to list which hymns are sung that week, when there are prayers, etc. From that I do the slideshow which has the words of hymns, plus the words of prayers if given, the dedication, etc. I check everything two or three times to make sure it is all there.

Seems on Sunday I've left out two of the three hymns completely, for one there was only the chorus part, and there was no dedication.
For the e-newsletter, there were announcements left out. 
In other words, I screwed up. Bad. And I thought I'd checked everything so carefully.

So, I asked what they wanted to do. They are very good at supporting me, but if I don't do my job, they should not be paying me. I explained about the early Alzheimer's symptoms, at which point I broke down in tears. I don't want to know that my brain is so damaged. It was easier to be in the wheelchair last summer, or use the walker, because then people were naturally helpful or attentive. With the brain damage, it is all inside. Invisible. And I'm less than human. Less than me. Less than what I was or want to be. Invisibly disabled.

It is not fair for the congregation to struggle, for the minister to have to think on his/her feet when something doesn't come up on the wall.

I offered to take a leave of absence; and that they would be perfectly fair to let me go if I don't do my job. I offered to resign.Whatever they decide is fine by me.
I trust none of my own decisions right now. So - we wait to hear.

On the lighter side - you know you have Lyme Disease when:
  •  You look forward all week to a boring evening at home.
  • You can't wait to get into your long flannel pjs and crawl into bed with an electric blanket, socks and a travel mug of hot tea (and it is summer or the heat is on 22 C in winter).
  • One shelf in the fridge is filled with medication. 
  • It takes longer to rest than getting tired. 
  • When people say: You look so good. How can you be sick? 
  • When all the pharmacists and lab workers in town know you on a first name basis. 


chillin with Quillin said...

sorry for what your going through, your in my prayers, take care!!!

Anonymous said...

Oh Meer.. so very tough. So very unfair. Praying for you, skattie...

Bronwyn said...

You must be feeling abit down with the changes in your brain function.
Hope your church keeps supporting you as that what being part of a Christian community is.

Teddie Seeley said...

In some ways I understand your plight. I have fibromyalgia, and of course it is another one of those invisible disabilities. I've had people say things like, "I can't see anything wrong with you", because they can't see inside of me and the struggles I'm going through.
The "fibro fog" is frightening, I forget things all the time now, and I can't spell things worth a darn anymore, and forgetting peoples names that I've known for years, is truly horrible, especially when they are related to you.
So please know, I truly sympathize with you.

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