Sophie's Story. Next Stage. Day One.
My beautiful souls,
I know I only knew I would be going for IV infusions late last week but I feel this week and set of treatment needs to be documented.
Over the next week I will be going a number of different IV infusions over 5 days with a 2 day break over the weekend.
I had hoped I wouldn't have to go down the antibiotic route for my recovery. As many have different responses to them, and they can be dangerous. I have to have faith in my Professor though and as always - I am willing to try anything!
With my increase of medications late last week I am also dealing with another herx reaction. These make days very hard. When you are already in so much pain but you have more and often new symtoms to deal with and to know I have a week full of treatment ahead, I am panicking and it is a daunting prospect. You want to cope the best you can. I know me however and I will cope.
Lack of sleep, and my temperature rising with extra aches is making the almost 4 hour train journey with 2 changes daunting. Where is the time travel machine or magic wand to just magically get time there.
I will always smile but the difficulties are hard work.
Waking up sweating but freezing, unable to feel any limbs, aching, feeling sick, knowing you must get up ready, dressed, take all your med's , make up the herbal teas and finish packing up. The dishwasher to unload ( smashing a cup in the process ) , bins to take out, organise yourself. And to add fuel to the fire you can't taste anything - everything tastes like plastic! Us warriors however always get up and get it all done ✅! But you have to appreciate it isn't just a 15 minute jump in the shower, grab some jeans and a coffee on the go job. Making sure all jobs are complete way before I am due to be ready. As a good 20-30minutes sit down is required to recharge.
This is just one of the reasons I wouldn't wish this disease upon anyone. To have to tailor you life around basic tasks and taking 20 minutes over a 5 minute job.
Every night going to sleep not knowing what you will be challenged with the following day. You don't know how much time you will need to make your 'get ready' time and how you will be feeling. You just have to give yourself plenty of time.
I am however looking forward to a week of recovery. It's no beach or sunny all-inclusive. But it will be time to focus on treatment and good laughs with Mama bear. 💜💜
We have to use these dark times to dig deep and use the negative energies to drive us to kee fighting.
Thank you to one of my close friends Ellie for calling in and taking me for a good old fruit wine 🍷 one of our favourites before my trip today. You don't understand how grateful I am for your company and your kindness for travelling all the way over to send your love and support ❤️.
Thank you to my amazing family, who have overwhelmed me with their absolutely beautiful cards and gifts to place all around our hotel room. To remind Mama and I of the love and support we have.
Mama has t-shirts for us both and we all have our bracelets on to help spread awareness.
Look at how talented my amazing Grandad is!! Such a beautiful picture of my little woof woof. So kind thank you so much Grandad ! Will cherish this picture for life.
Lyme disease awareness month may be coming to an end but the warriors fight stronger than ever and the message needs to be raised more than ever. With growing cases and less effective treatments we need to be aware of this horrible disease before things become far worse.
What treatment is everyone else taking on and trying?
Many of recently returning from D.C , Poland, Cyprus and Germany after long months of treatments. Have any of you travelled aboard?
Let's kick so ass!
Let's go Mama!
Love and peace