This could turn into an emotional blog.
Firstly I want to dedicate my post to my Mama and my family - my rocks, diamonds and hero's. They are amazing and without them I wouldn't be where I am today. I am blessed and truly grateful.
My Mama came across the Lyme Diease group on Facebook and encouraged me to join. I am sometimes a little weary of these groups but I felt it may help like my Mum did to hear other people's stories, how they are coping with treatment, what treatment they are receiving and how they manage their lives. As I am totally new to all this and need to gain as much knowledge as I possibly can to ensure I am doing all I can to heal the best I can.
I joined and was truly overwhelmed by the support, well wishes, advice and beautiful words of fellow Lyme warriors. Their stories also so inspiring and motivating. These warriors, I can't begin to tell you how much respect I have for them. I know the pain I go through everyday, even though I lie about how bad I feel most of the time so people don't worry but knowing I am not crazy and people suffer as I do is very comforting.
Friends and family are amazing supports but they don't understand the pain you are going through. I may say my arms are aching today - so they will brush it off as a few muscles aches but literally I can hardly feel my hands, like this morning I couldn't plait my hair like I wanted to because I couldn't lift my arms long enough to do the braid because the aches become unbearable. I won't show the pain, as I don't want to be the Debbie Downer, the moaner or want you to feel my pain & cause you to worry. I just want to be as normal as possible!
They may cancel on me or alter arrangements, I will say ok and get upset privately about being let down but they didn't see that getting up was a such an exhausting and challenging task. Waking up unable to feel any of my body- wondering if I can move or not. Too weak. Over thinking getting dressed and rolling out of bed, forcing myself up. Making sure I am ready 2 hours before you are meeting me because I don't know how slow I will be that day and I need to make sure I am up and ready in time.
My headaches aren't just headaches! My right side of my face feels like I am being stabbed with sharp pains, I struggle to think, talk, my head is burning and focusing takes 10x the effort.
Many people and I don't expect them to, don't realise how painful the symptoms are. However of course the people in the group really do and their words and motivation comments telling me to researching and fighting have really touched me.
I have been let down by some people's reactions to my illness who I thought and hoped would be supportive and some people have blown me away with the kindness and love. I am truly grateful!!!
It's time like this when you really realise who will travel with you down the bumpiest roads, weather out the toughest storms and support you know matter what.
Recently I have had some darker days and although I try my upmost to be positive and smiley, my body feels like it wants to die on me and having to pull it through is physically & mentally exhausting - it can be overwhelming at times and on top of feeling incredibly unwell you miss you, and all the activities you are missing out on. That is hard to accept.
Today is a perfect example- I am so grateful to Shannon for going on a coffee girl date with me. However visiting my fave cafe Light Ash Farm and seeing all their amazing cakes. It was enough to bring me to tears. Shannon also bless her just had tea and drinks so she wasn't eating infront of me. I told her to have whatever she wanted! I appreciate her thinking about my feelings though, I really appreciate that. As it was so hard!!! Crunchy chocolate cake, lemon and white chocolate, sticky toffee pudding, massive brownies! If only!!!!
I can't start being selfish though and being angry about not being able to have cake, I must focus on the positives. That I was able to get out of the house, see the sun, get some fresh air, see a dear friend, enjoy some girly chat and enjoy my peppermint tea.
I have to take each day as it comes.
I used to have endless goals; career & travel mainly. Now my focus is getting through the day, getting out of the house for just an hour and treatment. That seems dramatic but I have to be grateful for the small pleasures.
At the weekend a family friend said I was 'looking well and doing well.' It was a lovely comment to hear. I was pleased that my pain wasn't showing through and I could hide it but my Mum especially knew that all I wanted to do was break down on the floor and scream. My reply had to be 'I am still here.' And I am! I am still fighting. I am still at events, still researching, raising awareness, getting out, blogging and working on books! I am fighting - not letting it beat me or accepting defeat. I may not be on top form- but I am there!
I used to be so bubbly back in the day and over recent years I have been accused of being a little negative and seeing all these warriors be so positive and inspirational makes me doubt my positivity. I need to be even more positive.
I really want to keep raising awareness because it is so important and SO much more needs to be done and I also feel I want to share more of my story - so I can look back but also help and inspire other Lyme warriors like so many are inspiring and motivating me.
I am still working on my Cuban book, I know I haven't done much cooking or experimenting recently ( I know not like me ). I haven't lost my passion for cooking. However I can't taste much at the moment and so creating dishes is difficult when you don't know how it really tastes. I have been more vulnerable to reactions so I have been eating foods I can tolerate and know are ok for me. My energy levels have been low and pain levels have been high so cooking a simple meal takes longer, cleaning up takes longer. It drains me quickly so I have had to make sure I have my down time to rest too.
I have lots of ideas in mind and have been writing up a lot of the research side of the book.
I also hope to create a book on my story - my health story in hope, I can help others battle through this extremely difficult journey too.
So I do have plans for the future to keep me motivated.
My blogging and research currently my main focus. This work motivates me and I enjoy them greatly.
I want to round this blog up, by stating how strong people suffering from Lyme and co-infections truly are and why I will always refer to them as Lyme warriors. In this game you have to have thick skin and a hell of a lot of strength and those are traits of warriors.
They battle hard, accept relapses, keep positive and stay open minded to treatments which makes them real hero's. Their family's and carer's also hero's. They see the pain and go through the journey too!!
I couldn't fight without my family and especially my Mama! She has spent all day ordering all my pills this morning, organising more tests and driving me around. She is part of my fight, story and treatment. They deserve to be recognised and their strength highlight too.
I am not saying diseases like cancer are not serious, hard or upsetting but atleast in many cases treatment is known and clear. Lyme has not recieved the same amount of research and testing that other more common & well known diseases have! Allowing us to be open to receiving the wrong treatment, misdiagnosis and our symptoms ignored. Causing longer suffering and frustrations. It is like a chess game and Russian roulette, one wrong move could be fatal and that's why more research is needed and more money needs to be put into tests and treatments. So then we can have a clear path and know where we stand.
Reach out if you are suffering with Lyme. Share your story!
Finally, thank you to all the lovely warriors who commented on my story and wrote such beautiful, inspiring words.
Let's keep spreading the word & love. ❤️❣️
Love and peace