Today, I have managed to write. I apologise for not writing over the weekend. I have not been feeling well at all.
There is now lots to catch up on.
Firstly, I am overwhelmed with pride over receiving 3,000 likes on my blog post - 'I'm Tired' The Code - Decoded on the Mighty.com. You can find it right here on my site. Though this is amazing it has only been up 3 days so it is really making waves and reaching many people. I really hope it is helping other sufferers out there.
You may also of seen Matt Dawson coming out and telling us his Lyme story on the BBC 1 news and Good Morning Britain on ITV this morning.
It is amazing when we have public figures sharing their stories as it makes professionals listen. You could see how hard it was for him to share and accept the troubles the disease has caused him. Although it's so hard to watch people speak with hurt but it is also needed. As it's hard hitting for the professionals making them hopefully sit up and take note so more will be done.
The 'Tick Project' that has been set up in Bristol is amazing. Please get involved and check out their website. Simply type 'The TickProject' into Google and you will see the website.
I have emailed the MP once again in hope he will help the 'Tick Project' come to Lancashire to raise further awareness.
Please, please if you do get bitten or come down with a fever not long after being on a walk or around wild life ( remember only 50 per cent receive a bullseye rash. ) Demand antibiotics and if after the two week course you don't feel better go and get another 2 weeks.
If you begin with 'Lyme' symptoms ( remember it can remain doremat for up to 30 years ) then please get checked out. Send bloods to Armin Labs in Germany and make sure you cover all paths to save yourself from the torture that is Lyme.
Here are the symptoms to look out for:
- flu like symptoms
Later symptoms ( chronic Lyme ):
-heart problems ( heart attack/stroke )
-light, noise and movement sensitivities
-inflammation on the brain and spine
-intolerances to food, chemicals & materials
-tingling in your hand and feet
You may not experience all these symptoms and it's so easy to mistake them for your common stomach bugs, colds and illnesses as these symptoms overlap other illnesses. However if you have a few of the symptoms, know you have been outdoors, near animals or travelling demand a Lyme test. Best to be safe!!! Please.
My health - why are you still sick?
Why? Why aren't you improving ? What's next?
The dreaded questions. Only asked out of concern but right now I am just proud of myself for getting through the day.
It's exhausting fighting your own body.
Speaking to my professor today and expressing my concerns about becoming worse. He explained how the my reactions are showing how present the viruses are in my body and us waking up the immune system is causing them to up their game and fight back. Attacking & battering me.
This is why we go through the herx reaction. Where our symptoms are heightened when we first begin new treatments as we begin attacking the toxins, viruses and parasites they begin trying to protect themselves and attacking back.
Unfortunately my liver is already extremely inflamed and is not coping with the level of toxins it has to break down in my body when we begin killing off the viruses it has so many more toxins to flush out. I have so many viruses to fight off and an extremely high positive Lyme to fight off that my body is just so overwhelmed.
Epstein Barr and the Herpes complex are also known to attack the liver. So they may be keeping my poor liver inflamed. As they are attacking and trying to kill off the organ that is trying to flush them out.
It's scary writing about it all.
Your body is supposed to be your best friend it can never leave you and is with you for life. Yet in mine there is a civil war going on every day.
Now that these viruses have been in my body for almost a decade it has convinced my immune system that they are the good guys and my body is the enemy.
I am the enemy.
It is exhausting.
A professor in chronic fatigue and autoimmune disease from Wales said that the parasites won't kill the patients. They have the perfect little home. If they kill me, they kill themselves. She is right. That is why Lyme never gets written on death certificates, so professionals don't see it as a threat because the 'death rate is low.' When in actual fact yes they may not kill us but their hard work to create their perfect home causes complications that do kill us ( heart attack, stroke, cancer etc).
The parasites just make life hell for us. Whilst they enjoy themselves - becoming cosy in our tissues, cells and organs.
A US consultant said he treated cancer patients who were dying and didn't have long to live but were fighting to live. Then he had Lyme patients that couldn't die and wanted to. Due to the agony we have to go through.
On Saturday I was crying on the phone to my best friend not knowing how I could go on. I was trapped with never knowing if or when my pain would ease.
Nobody can imagine what it is like unless you go through it yourself.
I simply washed my hair and then had my head itching like crazy, burning like all my hair was going to fall out. As I was reacting to the shampoo the shampoo I have used for years. Mama kindly helped me change all my pillows and bedding to help with my itching and make them not too heavy to lift or heavy on my body.
And now I am having to consider renting somewhere that is a bungalow type set up.
Which is killing me. My house 🏡 is my life. It's my love. I can't hack the stairs at the moment, with my joint and muscle weakness I have the movement and flexiblity of an 80 year old it seems. And the thought of the stress and strains of moving is daunting to me. With everything else I am my family already have to deal with.
Just another soul-destroying example and way this disease affects us.
I don't like telling you all the effects and what's going on at times. As I try to be so postive and paint a 'I have it all under control' and 'I am adapting just fine' but this disease just loves to take. Anyone would get low and feel upset when you have your favourite foods taken away, your hobbies of baking, travelling etc and on days I struggle to write and colour now. To then have to accept losing your house, you can't drive your car and your body feels like it is giving up on you.
I then watched some YouTube that Saturday night on consultants and professors talking. I needed some reassurance. As I just couldn't stop becoming tearful.
Yes maybe even today I doubt whether I can pull through but then my inner athlete and fighter comes out in me and reminds me nothing will beat me! I can't let it happen. It's not me.
Though I have to accept I am extremely poorly and can't do all I want and used to. Which is hard to accept.
The next few weeks are going to be rough. Once my liver is in a better condition it's on with the treatment ( orally ) to try and conquer these viruses. So we will have to go roll with the herx reactions and get worse before hopefully improving.
We are taking on -
A possible 3 air born disease
3 strains of Lyme ( Borrelia )
2 stains of coxsackie
Herpes 1,2 & 6
This is hard to swallow and hard to face / think about when you already feel like you are on death's door. I have got this far though so I know somehow I will pull through!!
I am trying to keep positive - not be the Debbie downer and keep smiling.
My medication collection is forever growing to try and support everything.
Fighting your own body is a full time job.
I really am having to change and adapt my whole life to accommodate my illness and make things easier for me. It's all not sitting well with me and is difficult to accept.
I really wouldn't wish this hell on anyone and I daily question what sins & crimes have I committed to be given this test & challenge. Though I have to flip the negative and see it as it's been given to me as a gift to make me stronger in the long run.
I was so grateful and thankful to see my friends yesterday. They really, really cheered me up. Bringing me cuddly toys a large pink unicorn - what more does a girl want. Just the catch up and company gives me so much joy and shows me that the fight for life is worth it and my support system are the number one crew. Love them and so grateful.
Thank you Ellie, Adele and Jacob for supporting through this weekend.
And my family for just being there!! Especially Mama bear who always makes me feel as comfortable as possible.
I pray for the day.. maybe this hell will ease for now I thank you all for your wonderful support.
Let's get to 5,000 hits by the end of the month. That would be fantastic.
Your support is what keeps me fighting and fighting to be postive.
I apologise for the tone of this post.
Some may find is hard hitting and others may think it's too negative.
We all have our rough patches and down days. We make the best of what we have.
I try to be as open as I can with you all so you understand more about this devastating disease and hopefully my experiences will stick with you. To make you more alert and educated on tick bites, Lyme disease itself and where to get tested etc.
I wouldn't feel like I was doing my job if I wasn't helping in some way.
Please understand it kills me at times to open up and admit what I do as it often goes against my inner fighter.
I know you will be respectful of that. I am truly grateful.
Love and peace- more than ever.
Feeling sluggish and rubbish when you have woken up? Get boosting up on bananas the more the better - they will help settle your stomach, boosting digestion, they are a mood enhancer, they will give you the energy you need and keep you full. Buy my book for banana receipe ideas.
Wake up every morning and ATLEAST have one glass of lemon water before doing anything else! Ideally try to drink a litre of water. The lemon wakes up your digestive system ready for the day and has great cleansing properties.
Check your dairy and meat intake - dairy can sit in your system for up to seven days unable to digest properly. Meaning other foods also get neglected and nurtients aren't absorbed properly and you feel extremely bloated. Go and smell your food bin, your stomach will be in that state. Rotting foods in your belly - hmm nice.
DO NOT FEAR CARBS - THEY ARE NOT THE ENEMY! CARB UP!!
Bananas, Rice, Potatoes, Leafy Greens, Corn, Beans, Lentils etc PACK THEM IN GO MAD.
NEVER COUNT CALORIES - NEVER RESTRICT!! These restriction 'starvation' diets who tell you to only eat 500 calories a day then have a treat day - where you binge out and eat WAY too much, is simply messing up your metabolism and on your binge days yours body stores all the fat meaning you gain weight because it knows it is going to go back into starvation mode and needs to hold onto every little thing it can. HELLO WEIGHT GAIN.
Life is too short not to live it to the full, making yourself happy.