I'm exhausted - extremely tired. I never expected to feel so zapped after last week's treatments.
I guess like the nurses told me, it's like running a marathon. Your body is pushed for reactions then calmed down. Along with having lots of goodness in a cocktail of vitamins and minerals pumped into your body that your body is trying to use in the correct way and not allowing the viruses take them for themselves.
With Lyme and chronic diseases we regularly need a boost of our vitamins and minerals because the viruses extract them from your foods to use them to help them reproduce, grow and keep living.
I am so lucky that at present I only have intolerances to foods. People who have been suffering with Lyme and other chronic diseases for many years more than myself are now intolerant to materials; cotton, plastic, metal etc . Chemicals; petroleum, perfumes, nitrogen etc.
The list goes on.
There is an Italian lady currently at Breakspear who has her own room where the windows are covered with foil to stop the sunlight from streaming into her room. As sunlight through the glass can trigger reactions within her body.
It's so scary.
I love hearing other people's stories though they are very eye opening and touch the heart.
They make you realise that there isn't a quick fix! Recovery is and will continue to be hard and hellish. The road is a long one and having to accept that this is provably going to be my life is truly daunting.
Having to ensure that I keep up with retesting every three months so I can continue to eat the foods I need! Retesting is SO important because if you get a virus then your tolerance to foods will decrease so therefore your vaccines will need to become stronger. To help the immune system. So then it isn't attacking your foods whilst it attacks the virus. Though it may be the other way - antibiotics and herbal supplements may have killed off viruses and / or made them dormant. So your food tolerance level will increase and your vaccine strain can decrease. Your immune system is now under less stress and can tolerant your food a lot better.
This is why when I had that virus before Route 66 last May/June, I was so unwell and although the virus cleared up after spending 48 hours in hospital being dehydrated after 3 days of throwing up everything. My body was even more intolerant to foods and I have never felt the same since that virus!
I began struggling eating the foods I before could tolerate !! Which was annoying to me. Also on top of the heightened intolerances, my stomach was still very weak. I think this was due to the immune system being so busy attacking the virus and my food it didn't have the time to heal my body.
So that's why we have to retest and receive infusion reboosts of vitamins and minerals so then your body can heal itself and your tolerance level is at the correct level to help your immune system. Give it the time and energy to only spend it's time fighting the virus! Not attacking your body.
Why all the intolerances? It doesn't make sense?
No you are right, it doesn't make sense. I am only just understanding.
But you have to remember these viruses are clever. For years after infecting you they have set up shop on your major organs and have worked hard at changing your DNA within your cells so that your immune system doesn't see them as toxins and attack them. Those changes cause your immune system to become extremely confused. It knows there are bad anti-bodies invading your body but it doesn't know what they are? These changes in your DNA causes the immune system to begin targeting your food, chemicals and materials you are exposed to. Causing intolerances.
So on top of having to cut out food to prevent reactions, the food you are putting in and the vitamins and minerals you are consuming - the viruses are zapping and taking for themselves to help them reproduce.
Everyone at Breakspear are on strict diets due to their intolerances, that they have to follow to prevent reactions.
They have to re-test and have regular infusions for a boost if they feel drained to help their immune system.
We must learn to really listen to our bodies! As we need to avoid catching viruses and bugs otherwise it causes so many issues within our bodies.
We aren't like normal people - where two days or a week of antibiotics will solve the problems.
Our bodies literally attacks itself not just the virus.
The stories that are shared during our lunch hour like I said are heart breaking and a hard pill to swallow, finding out the reality that this will be my life and the fight will be an everyday thing! They are also comforting knowing I am not crazy and not the only one taking on this journey and fight.
For years I have been so hard on myself. Pushing myself, ignored my body, my pain. This angers my Mum especially as well as other family members as for years they have told me to slow down, rest etc. I was so focused and determined to be normal and well keep hold of the Sophie I was once was - the swimmer who was bubbly, giggly, active etc. Not accept the tired, sad, pained girl I was and have become. What didn't help this was the NHS telling me and treating me like I was an idiot - wanting attention and crazy.
So I believed I was crazy and lied about how I was really feeling ( pushing through ). So these damaging traits of pushing through and ignoring my body became automatic and why the habits are hard to break.
Now - seeing these other sufferers and seeing that I am not the only one.
Has and is allowing me to accept my situtation a little better.
I am accepting that no, I am not lazy. Yes I am not running a marathon but I am living, I am getting up everyday, I run my house , research and do my blog & book work. Just because I am sat down or take a 2 hour movie break does not mean I am lazy!! My body and mind are exhausted and need a break. I must accept that. I am a little more. I don't feel as guilty as used to about resting more.
I have accepted that my aches and pains are sometimes too much and I do need a wheelchair - and that's okay!! That the experience is worth far more, if it I can travel or go somewhere then that is worth more to me. Rather than missing out or pushing myself and causing so much more pain. I have and am learning to accept that my suitcase may have to be filled with my foods over clothes. That taking bags of food- although takes time and makes packing a little more stressful means that I know I will always have food! Not like Cuba (which I wish I had taken food but we only thought about the idea once home) where it was starve or suffer a reaction.
Bagging up portions of cereal, rice and pasta always means I have something to eat in my main meals. Again having to accept that it's ok to take your own food to a restaurant and ask them to cook it. At the
moment it's good to have Mama bear with me as she helps to explain and it always comes out well. As many of your know it's often so difficult trying to explain to waiters and waitresses what we want and what we can't be in the food.
I am trying to accept that unfortunately I am now not normal.
I have a number of serious viruses who have unfortunately set up shop in my body and now are basically controlling my body and will always be within me. At times they may be kind to me and I may be feeling better, be able to do more. Other days they may not be so kind and be on a mission to reproduce and this causes many issues within my body - more intolerances, fatigue, migraines, sensitives, pains, aches and neurological issues and more. Which means we have to take a step back , accept treatment and try to fight through the best we can.
I must learn that the above doesn't make me a weak person. I never asked for this. Nor did anyone who is suffering.
I got upset, very upset with Mama when I was receiving treatment about why me!? What did I ever do to be struck down with these viruses and have to go through all I have. Feel like I have lost a good 3 years of my life. Given up so many hobbies, careers and goals. I have never purposely hurt anyone, I always try and be the best person I can be and always be a one to follow the rules. So why me? What did I do wrong?
I have to accept that it's not my fault!! I have never done anything wrong. I have to learn to see it as a test. Fate is testing me to shape me into a stronger person and that these daily struggles are for a purpose I just haven't figured out why I was placed on this road just yet. However I do know the struggles of will and are making me a stronger person .
And people who make history never have a straight forward, boring story - right?
I never wanted to be normal so why I am always set on trying to be normal. I never will be normal and that's ok..
I was never meant to be normal I am worth more than that and maybe that's why I am on this journey because for years I have ignored my strength and that I am worth more that I needed a big slap in the face .
Everyone at Breakspear are such amazing people you always question - why them? They are so lovely and successful. That maybe fate has placed them on this journey too - to make them realise their worth.
I think this is the best way to see this challenge and upsetting upsetting situtation we find ourselves in.
Make everything into a positive.
So these 2 weeks off I babe before heading back to Breakspear I aim to spend and create memories with my loved one, research and keep learning, blogging, and most of all allowing myself to rest!!
Lots of movie nights, treat binges with my faves, lie ins and early nights and mindful colouring scheduled.
And that is ok.. deserved.
I am also so relieved that my auntie has finally got some antibiotics for her bite. She was fobbed off on her first visit to the GP ( no surprise there ) and I was nearly in tears and maybe a little bossy as was my Mum abler going back to the docs and demanding antibiotics. My auntie returned and they admitted it was was a tick bite . It was obvious there was a massive bullseye on my Auntie's leg. What more evidence do they need? They then prescribed my Auntie antibiotics.
I am so relieved. She was bitten two weeks ago so the virus is still in her bloodstream and can be killed off with antibiotics but if she had left it another two weeks then the virus would have begun attacking her major organs and begin calling them home. Meaning that she would have Lyme and now have faced a life long challenge of endless treatment and pain. Antibiotics no longer able to kill off the parasites but causing them to change your DNA within the cells and reproduce.
It's a dangerous and upsetting situtation.
Thank god my Auntie is on the mend. I would never wish this awful disease on anyone especially a loved one.
It's a lonely and trapping disease. We feel we aren't in control. We aren't - our bodies have been invaded and DNA have been changed to suite the parasites. However we can try and gain control back by accepting the treatment and keeping on top of the treatment. To be able to live as much as we possibly can.
Having my own children is probably off the cards for me. I can't take the risk of giving birth to a baby and passing on the Lyme - possibly causing the baby, neurological problems, being paralleled and more. It's something that is truly unfair on me and my family to have to fund and emotionally cope with the illnesses and ultimately it's horrible for the baby to have these issues to battle through for their whole life. So a surrogate or/and adoptation are strong options for me.
There is so much to accept and adapt to, to fight this disease as well as we can that it takes a lot of time to get our heads around. Even harder to explain to others so they understand.
I am slowly getting there but a long way to go.
Am I ready for the fight?
I am truly exhausted and fed up with the fight but I was never surrender!!
I will continue to learn, research, adapt and accept in the best way I can to help myself with heal as much as possible.
My memory and eyes are playing up at the moment so please bare with me in regards to blogs. Sorry this one is so late - it has taken some time. I also apologise if you tell me something or organise something and I forget. I am not purposely being a pain.
I hope you enjoyed, learnt a little and understand a little more.
I will leave you with some good picture quotes that explain a lot of what I often want to say myself.
Big hugs !
Love and peace