It sort of came to a head yesterday. In church. I mean, really - can you think of a better place to relax and just worship, and be at peace?? Right. Me neither. I love my church. That is, until the music started up. The glorious thunderous music. And it was as if I was being electrocuted. The vibrations tore through me with pain so great that breathing became an optional extra I could not afford. So I doubled up and tried to hold myself together. I was sitting and that made it worse, because I could feel it through every part of my body, rear end, back, - the lot.
So I tugged at Jean's coat and said - I am in trouble here, but she did not know what to do - neither did I - because walking was not an option, and the music rolled on. Just before the sermon, we managed to get a message to a friend in the band to try and turn down the bass, as there was no tech man on the board yesterday. He managed to do so before the music started up again, but it didn't make a great deal of difference, so at the end of the service, I just sort of keeled over onto a friend's lap and sobbed and sobbed. I think everyone thought I was being slain by the Spirit. Hah. I was in agony. There were many prayers winging their way heavenward fervently from everyone around me, believe me.
Anyway.
I think the congregation now understands CRPS a little better.
And I survived.
They may be a little wary of me next week, of course. We will see.
For the past several weeks, I have said repeatedly to all and sundry, that my skin is crawling - it feels like the neurons are racing about yelling "something is wrong and we don't know what to do - Help! Help!". Pins and needles, waves of creepiness, goosebumps. It is bizarre, and tough to live with. Wind makes it worse. And now the music. Dear heaven, I still need music in my life. What will happen at the rehearsal for the performance with the American choir? We will find out tomorrow. Becky? I may be sitting with you.
So, I can go back to Bath for an appointment, but have said I will see what happens this week and then decide. I am supposed to practice the breathing and relaxation techniques. That is if I can ever get the shoulders to relax enough and stop bracing my body for whatever comes next. I woke this morning after another restless night with the shoulders up around the ears again. Ridiculous.
So, in the interests of being real, I am telling you this now, because I will not be talking about it on a regular basis. It is just there, in my life, all the time, and that colours some of the things I say and do, of course. Ask the man in India. He knows.
This blog is mine. I get to choose what to say, you see, and there is a great deal about my life which is not recorded here. I want this to be a happy place, not one full of gloom and doom, because I am not filled with gloom and doom. Yes, I hurt, but then so do millions of others, and I want to focus on the parts of my life which are great, and that covers at least 90%. The card about CRPS that I carry has a section "Please help me by......" on it. Here is what it says.
- Believing that the pain is real even though it is invisible and may not be readily apparent by my demeanor or activities
- Remembering that it can even hurt to be touched
- Remaining positive
And you know - I can even give thanks through the pain, because I have learned to trust God more. In times of pain, fear and worry, (and there are millions of those times) I give thanks for the opportunity to learn to trust Him more. It wasn't easy, believe me. It is still very hard. I am more prone to yelling at Him instead. He is used to me. I am not in the slightest bit saintly or anything remotely resembling a serene martyr. I have to go through the kicking and screaming phase first. I was born on a Thursday - I take the circuitous route. What can I say..... Sigh. No-one said things would be easy, you see. And they are not. But there is always something to grin about. And be thankful for.......
The sun is shining as I speak, and the coffee will be hot. The couch is waiting, and the daffodils are in bloom. My granddaughter will be here this weekend, and I have half a bag of popcorn left. People are praying for me, I have hair straighteners which work, and a pile of magazines to read, and a lovely blanket to snuggle under too.
Sometimes we get to experience bad days. Never mentioning them creates a totally false impression of life, and heaven knows, I don't want to do that, Nor do I want, in any shape or form, pity. That sends shudders down my spine, and we are trying to avoid all forms of shudders, remember. Be positive, please!! I am being positive - I need you to be so too. Most of you have been around here for a long time, and I love you all and so value your friendship. I really do. (Oh good grief - I forgot the hair straighteners - they have been on for half an hour - gah!) But sometimes....sometimes there are bad days. They happen.
Tomorrow? Well, tomorrow is going to be a whole new story, isn't it.........
10 comments:
Linds, as I read this my eyes grew wider and wider and now I begin, just begin, to understand. I know you to be a very positive person so have no fears about writing anything. This is your blog just as you say.
I'm wondering a thing here. Perhaps I should email. Okay, I'll just spill. As you know, my baby grand is mildly autistic. There are children in his school who are more seriously afflicted. Some of those children's nerves are so on end that they wear vests that literally hold their nervous systems together.
(Then we have the Thundershirt for dogs who have problems with their nervous systems. Molly's getting one asap.)
It's a way out there thought, but I am just wondering...
Praying for you and believing that there is an answer because life without music or any of the things you enjoy doesn't seem right.
You certainly do give CRPS a voice.
Linds this sounds unbearable and intolerable - is there really no help in this day and age? I really hope that the NHS can do SOMETHING to make it at least tolerable. You are brave and you are strong and you are right to write about it - I had no idea this even existed! - but you really shouldn't have to deal with this. Come on NHS. Mrs L needs sorting out. Thinking of you and having words with him upstairs. Love Helen
Ok, this isn't pity but it's sympathy and also admiration because, even if you aren't a saint (I'm shocked...) I think you're very brave to be positive about it all. It sounds worse than horrible. I hope you're feeling much better today and that Bath can help long term.
I cannot begin to imagine what that pain must be like for you. There is little worse than nerve pain to begin with, but to have triggers like music set it off is dreadful. Not only did you help everyone to better understand the horrid disease, but you probably also gave the congregation the biggest scare of their life as you collapsed. I do hope this active stage resolves quickly. Touchless hugs!
So glad I got a minute to stop by today dear Linds! You have helped me so much to understand what this is all about. I admire your spirit and your faith in God for strength. I admire your attitude and how you push forward. The way they pound the drums at our church hurts without having a medical issue, I sometime I feel like I am at a rock concert. I know I am an old fogey. You are so right that we tend to put all the good stuff in our blogs and it does create a false impression of our lives. I miss reading your blog regularly, as you know I love your style of writing. It makes me smile, laugh, and sad sometimes but it's always real! Take care my friend, know that I think of you often!!!! xox
That's just beyond horrible, Linds. I was reading about CRPS and I wonder if you are a candidate for the device that emits impulses to the nerve area.
I won't mind at all sitting beside you at our concert. I'm so looking forward to being there.
Linds, as others have said, you have helped us to better understand CRPS. I've dealt with the skin crawling (due to a different issue, and thankfully now in the past), but the effect it had on me was constant, unstoppable itching for literally weeks and months at a time. I know from experience that it becomes nearly intolerable at times. I so admire your attitude and spirit. It can be so easy to sink into looking at only the bad, but you are an inspiration to me with your determination to be active and positive as much as possible. I am praying for you and hoping you can find some answers that will relieve your pain and "creepy crawlies."
Oy. I don't know what to say. Much love and affection and good thoughts. And of course prayer.
Ah Linds! You are indeed a positive person and you will continue to transcend this awful thing. I hope some rest and relaxation will help those wretched neurons to settle down. Enjoy the weekend with your precious little girl.
What a voice. I am encouraged every time I read your Blog (more frequently now I hope since I got a new computer - that works!). Your ability to write with grace and humor about difficult situations and encounters is always a reminder to look at the bright side of every situation and give thanks to the Lord for all the good. Praying for relief and an "inactive" phase!
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