Thank you for a beautiful, poignant and touching post. Your words are just lovely and heartfelt.
You said, "when I'm in burning pain I still try to smile because it means I have a soul," wow that is food for thought right enough :-) lovely.
We do change completely with this disease in that we now know the artificiality of the modern world and materialism of it.
Since many of us have lost so much, we also realize we can survive materially on very little, just the basics.
Because this illness somehow strips us down to our bare bones. And no one else apart from fellow sufferers will understand this.
I remember the second time the disease got really bad I threw away all cloth things apart from one set of clothes which I wore only to enable me to get other clothes that were safe as I was getting reactions to everything cloth. I didn't even have a bra for a week.
Oh how I now realize how good it is to have the basic clothes and basic bedding, not a blow up bed which keeps getting holes in it, slowly sinking down. I got rid of all my books at the start and now have a reaction to library books, is it book mites or mold? I don't know, but I cannot touch them or go into a second hand store without reactions.
But we adapt and learn to live with what we have. So yes we can live sparsely materially but one thing we need to fight this is medicine. It has been said that lyme and indeed morgellons for that matter are a rich man's disease because they are so complicated and require soo many medicines to fight so many malfunctioning systems in our bodies.
It's wonderful that many people are getting help from Mel and the foundation.
I'm. Quite taken aback today by the fact that I'm getting help with these medicines it's surreal and quite at odds with the way the harsh world often operates.
But it's really going to happen. It's such a great thing to offer a lifeline to people who have been drowning often. The medicine is like arm bands :-) how great is that?
And much needed for many people who struggle daily to cope with being so sick that they feel like a shell of a person. Though we do still have our spirits and we all are obviously fighters.
We constantly fight, fight, fight to get some modicum of health back.
But do you know what? I was thinking today, how exhausted and weary and tired I am of always fighting for my survival and feeling these bites, crawlies, specks.. How i hate them with a passion.. and everything being about survival. Soo tired.. Rundown with it all and very weary. And then I thought, "wow!! I'm going to get sent these excellent medicines soon and so that soothed me... Not just because of the medicine, but because there are people who care that others are suffering, Mel that they have never met that sometimes even he struggles to exist...
It's a lovely thing to reach out your hand of help to someone in need who could be lost I'n a maze of ill health and help them find their way through it.
Amanda. I watch a lot of you tube videos where people help homeless people and I feel emotional at a lot at them. I also watch people helping sick dogs and cats to health. Both make me cry. Because with both sometimes hope has been lost you can see it, in their eyes and then they are offered love and support and all of a sudden the persons face lights up with a smile or a sparkle in their eye. Or the dog wags his tail and smiles and plays happily content in the knowledge he is safe, looked after and yes loved.
No man is an island, we can feel completely alone with this often, but people here are helping. They want the suffering person to after time, get stronger and stronger and build immunity, Learn to feel safe again.
They want the suffering person to feel safe to be affectionate and to connect with others.
Please anyone who can donate to help Mel help people who are struggling hugely, to cope with this terrible illness and to help Mel so he can continue to help them.
Go Fund Me
Karen, that's lovely that you and Mel are now a couple :-) To think of times when you were both so unwell that you thought you would never again have romance or love in your life!!
I think after getting better,it must be wonderful then to be able to connect fully and never ever will that be taken for granted!
I wish you both all the best and am pleased for you both.
God bless everyone here,
Ps.. I went outside for a walk today after being told by Mel that I'd get even more medicine then I ever expected and there was a huge big rainbow in the sky :-)
Pss. Mel you are a lifeline.
Love is a four letter word which no force is greater than. And God is love.
If one can change the way they look at things, the things they look at change.
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