BBC Awareness & Bacteria On The Brain

Over the last few days especially we have been lucky enough to have lots of media coverage about Lyme disease. 

Many sufferers from the Lyme discussion group have bravely shared their stories on BBC radio 4. If you head over to the BBC website you can catch up on all of the interviews for yourself. 

Our disease has been given more time within the media over the past few months which is amazing, even if a few articles have been negative calling our disease 'the new trend' like we wish to be battling in the ways we do. This is a completely disrespectful quote and statement to come out with. 

Deep down though the negative articles are driven from fear. People are finally seeing the real dangers of Lyme and how complex and debilitating the disease is. With fear causes people to want to find blame so of course it easiest to blame us for the pain we suffer. We must brush off the negative comments and judgments and see them as they are - fear. We need to celebrate the fact that our voices are finally being heard and that with every one or two bad articles, ten positive ones were written. The positives largely outweigh the negatives and that's what really matters.  

A massive congratulations to all who spoke so bravely and shared their stories. You are truly inspiring. 

Emma who is also treated as I am at Breakspear medical spoke yesterday on her 25th birthday 🎉 about her journey with the disease on radio 4 ( 29mins into the interview ). She shared how she hoped to go out for lunch and to the cinema with her Mum but she didn't know if she was well enough. She managed it and she had a lovely day, joking around teaching her Mum how to take a boomerang picture. Her friends also surprised her at the weekend by taking her out for a meal. She was too poorly to think about getting ready to go out. So her Mum got her hair dresser round to do her hair and her friends did her make up and dressed her. She had a lovely night and just shows you how important a strong support system is. So cherish yours!

Pam from the Lyme discussion group also spoke about her struggles on the radio. On congratulating her she shared to me how embarrassed she was for getting upset over how the disease affects her. I told her not to be embarrassed that her emotion will have touched people in ways words can't. Emotion really shows the struggle. She appreciated and thanked me for my feed back. We are all used to being so strong, brave face and false smile that we don't allow ourselves to show emotion and our pain among people. We need to let our walls down however and show our emotions so people realise and see the truth, they will see the pain. So they can begin to understand. My Mum is always telling me to show emotion and stop with the false smiles. To make people understand I am poorly and suffering with great pain. That it isn't nothing. 

Natasha who runs Lyme Aid UK spoke on the radio about the struggle of the disease. The impact on sufferers and how the health professionals neglect us. Natasha is an amazing woman who does so much for our cause and I am so grateful to her as she is always so supportive of my work and does all she can to support it. I have featured on the Lyme Disease UK website as blogger of the month for September which went out on all social media platforms and am now so honoured to have 'The Lyme Light Of My Soul.' My poetry book I created and dedicated to my Mum ( because she is the light in my life!) filled with poems that are focused about coping with chronic illness. So fellow sufferers never feel alone. It will be featured in their 'Creative Corner' on the site. Show casing some of my poems and offering a direct link to Amazon for direct purchase. Thank you Natasha you are a star and I hope to keep creating work worthy of your amazing site and social media platforms. Truly honoured. 

I hope my work too with my books, blog, articles and research also helps work towards us finally finding a cure and having our voices heard. 

None of us asked for this hellish disease to control and become our lives but we have to make it our life's mission to defeat the disease and save others from falling into this trap. 

Congrats to all who have been in the media recently raising awareness you are truly inspiring and thank you for sharing your heartbreaking stories with the world. 

One day we will get there. 

Let's keep spreading the word. 

***

From the heart. 

Recently - I have really not been feeling myself.

I am so lucky not to have dementia, yet I feel some days I wake up and have no idea who I am. My mind feeling like it's been hijacked. I am struggling more and more in social situtations. Conversations are more difficult as my life is not only worlds apart from my friends but my brain isn't sharp enough to keep thinking up conversation. This is upsetting me greatly. It means social outings are far more exhausting and I tire quickly. I love and adore being around friends and family but recently these extra strains have caused me to withdraw or be extremely anxious over events. My life is very different. My days are based around treatments, pills, doctors and hospitals and my friends lives consist of the fun stuff; drinking, clubbing, working 9-5, holidays and travel etc. Slowly losing hobbies and joys in my life due to illness has left me more and more without any connection to people my age and my friends. At first - although upsetting to me I still had a sharp enough mind to know what questions to ask and what to talk about. Now a terribly exhausted mind leads to me being unable to create the same level of interesting conversation.

I get embarrassed and choose to retreat and get extremely nervous about appearing boring if my conversation falls flat or I can no longer fill the silences. 

I constantly share with you how I hold on to trying to be the old Sophie- fun and bubbly. The Sophie who could share interesting conversation that people didn't bore of. Now I am seriously, seriously holding on. Feeling evermore, fustrated and irritable. A frame of mind I strong detest. I thrive on a positive mindset filled with dreams, goals and motivation. Not a confused, blurred, fog. 

I apologise if I don't seem myself or the person you know me as. She is still here. My mind and body may have been taken over my the bacteria that haunts my cells and organs. My soul is still mine though and I pray through it all, you can all remember me for my soul and understand it's still here.

My fire still burning.

Thank you, kindly.

Love and peace 

S

Xoxo

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