The countdown has begun..
The big day, Mama and I have been organising since late September. All the months of waiting is finally almost here.
All the secrets we have kept and surprises we have in store!!
It’s been a quiet yet busy week at the same time.
Monday. Began well, I was honoured with being asked to become part of the Lyme Discussion Group UK admin team. I am forever offering my poetry to their website and newsletters and inform the admin team of the work I do alongside my MP. In myself I was feeling emotional and have been lately. My head has been feeling awful, despite my migraine injections. The crawling is getting worse and you feel like your brain is being eaten. At night when trying to sleep and you can feel it- it’s torture. During the day, I always try to find something to distract myself.
Tuesday. Tuesday. Was a day that was mixed with emotions. I felt all over but as always used chatter to distract attention away from the pain I was really feeling. The panic setting in about how ill I felt and how long I’d wished to be well for this party.
I felt heavy.. everything feels like it’s weighing me down. It’s exhausting moving around. Waking up in the morning feeling parlayed and as if you have been run over by a bus. The debate of whether to risk moving.. do you have the energy? Can you handle the pain?
Tuesday was the day I was finally feeling as if my Dad was understanding my push and aim to raise awareness on Lyme disease. With help from my Mum we got him to understand it was important to have tick removal aids on site and awareness posters. That it is something we can really lead the way in. At conference he couldn’t understand why the MP would want to promote a issue that didn’t relate to our industry but it really does relate. I won’t rest until we make a change and make a difference.
I was offered a book publishing opportunity which at first I thought was amazing. My way to break America. With a company that specialised in self-help books and had done a lot of work with HIV and cancer. On further research it seemed that other authors seemed dissatisfied with their services. So it made me hold off. They were eager to have me, offering discounts and so forth. I have to remember this is my story. My story. It’s extremely important to me and so needs to have the respect and appreciation it deserves with the right publisher.
There will come a time when I decide to publish .. my journey is on going and still has many pages to decorate. I won’t except anything less than a masterpiece by the end. I felt very let down.. almost annoyed. I could have made my family so proud. But maybe the timings are a little off right now.
I had a little cry.
Wednesday: Mama too is feeling awful, it’s like losing your right arm. Normally it’s difficult just moving and doing the basics. When your walking stick snaps the norm gets far harder. You are forced to function, forced to be normal. You don’t have backup. I am exhausted. I couldn’t just walk around zombified, I had to actually be on it. I am never ‘on it’ anymore. It makes it harder to cope and means I need my time to myself because I really can’t be normal for so long.
Today, was proactive ( everyday has to be) .
I became brand leader for the UK for the charity invisiyouth. This is a charity that helps youth’s and young adults find their voice whilst fighting chronic illness. It’s an honour to have been asked to be brand leader. The charity has bases all over the world and aims to connect people suffering in similar ways. To find comfort to help their healing. To find purpose in life and self-worth.
Dominique who runs the charity is an inspiring 25 year old and who travels the world meeting people suffering with chronic illness and giving speeches on her own story. She is an inspiration.
As brand leader I will host 3 fundraisers, I will be in the ’Spot Light’ in June /July on their website, with a little about my story. My socials, website and blog will also be listed under their brand leaders page! Super exciting. Thank you Dominique.
Thursday: always waking up to emails. Yet today was more interesting than most. Another opportunity was placed at my door which I hope to look into further and really analyse. Then Jay, who too suffers with chronic illness made my poem into a song ( thank you.)
My friend Mary did two amazing, personal art pieces for my Dad and Alex to keep forever. She is so very talented and it’s extremely important to support your loved ones and friends in their ambitions. Thank you Mary, they loved your pieces and they will forever be cherished.
Shopping - oh boy. Trying to function.. I haven’t the foggiest what I am doing. Knocking things over, what aisle am I down? Who the hell knows Frankly it’s a blur. Mama laughs but I am trying my hardest and frankly a 5 year old would dona better job. You question what you went out in and so forth because you really don’t have any idea ( or I don’t anyway). The panic of your hero being wounded, panics the soldier who has already lost a leg and is hobbling. As always just throw yourself around and hope for the best.
Maybe that should be my motto in life. It seems to be what I do on a daily basis now.
My hope and wish for being well on the party may not be granted. I can’t control as I always believe I can, the wars that my body takes on daily. My symptoms are unpredictable, frightening, odd and untreatable. Accepting that you have no other choice but to man up and make the best of it. It’s far from easy. You wish to click your fingers, sleep or take some pain killers and to feel like new.
My life is an endless amount of time of pain, fogginess and lack of focus. I am not as sharp anymore - my conversation lacks interest and excitement. I forget what I am saying. I use TV programmes at dinner to act like I am alive and just question things to encourage talk. My head throbs, joints throbs, chest throbs. The struggle to talk and breathe is even tasking.
My friend asked me how I was feeling yesterday...
it’s where do you begin?
It’s getting the point where my answer is just, ‘I am alive’. I should just be grateful for that, whether it’s in pain or not. Somehow, God knows how, but I am functioning.
What is important to me, is to make a difference. Touch people in ways that I am like a drug they can’t just buy over the till with ease. It’s a drug that expensive and hard to find. No other matching it.
To leave the world is a better place.
For now.. the stress, we have to try and ignore.
Friday, Saturday, Sunday should be fun days. Seeing people we rarely see and just letting business resume on Monday.
Mama and I especially deserve this time to enjoy. Just enjoy.
We have a blessed life but it’s damn hard. Harder than I could ever explain in words.
Like my life plan has taught me - it never goes to plan.
The party is taking place whether I am poorly or not. We may not have a choice in what life throws at us but we have a choice in how we repsond.
Crying is ok at times but dwelling and being negative is not ok.
This time won’t come around again- take the pain and illness as strength and rock anyway. We can’t hold any regrets.
Whether or not my plan of taking a little break and time off will happen or not will depend on me ( I know what I am like ). I can’t stop or allow myself to just accept downtime. There must always be a purpose to whatever I am don’t.
I hope you all have and enjoy a blessed weekend with loved ones.
Making memories to cherish- we sure will be.