These past few weeks have been extremely up and down and really have challenged me.
To you all, I have been positive, cheery, laughed and smiled but behind closed doors I suffer in a torture chamber that is truly unbearable. There have been many tears shed and many doubtful moments.
I lie, paint the smile on and don't truly express all my feelings and symptoms I am going through. I did this to seem more like the old me and maybe it's because I don't want to admit to myself that the symptoms are getting on top of me.
It's difficult to know what to do for the best. You can be truthful and explain, show people how you truly feel or you can try and suck it up and act 'normal'. Both getting you in trouble either way. Option one makes you look the 'complainer', the 'moaner', 'Debbie downer' and option two means that you push yourself ( crashing and burning ). People see you happy and think you are lying about the pain you are feeling.
Unfortunately we can't paint smiles on test results. We can't 'alter', 'change' then or tell them to 'suck it up.' My bloods from the doctors this week, show my liver is more inflamed than its ever been and my white blood cell count has dropped. My immune system is under immense strain. The anti-bodies & parasites the immune system is attacking and trying to fight are clogging up my liver. I am fighting so many viruses that my liver can't flush out the toxins as effectively. There is just too many to handle.
I tried introducing my vaccine with my high intolerance level foods oil, wheat, egg and yeast etc earlier this week. However I began experiencing symptoms and was forced to stop. I was struggling to breath, headaches, sickness, stomach cramps, sore throats. On top of everything else I was just putting more pressure on my body and my immune system alone.
Its soul-destroying and hard.
I thought two weeks ago that this coming weekend I would be able to experience my first vegan pizza or even just a slice. After the hell I went through to get the vaccine this was the pot of gold at the end of the rainbow.
To be in this place now is hard to swallow and accept.
I have to try and keep going however and try to focus my irritation into something possible. With this I have been contacting MPs, working out how to raise money for Lyme Aid UK and raising awareness with my blogs. Setting goals is sometimes crazy but they keep you focused and they keep giving you reason to fight on.
So if I am out or made it out please know it's taken a lot. It isn't because I don't want to be there or I may not even talk / give much to the event but I am just trying to deal with everything and still live as much as I can. My health isn't where I hoped it would be but I am working with the best I have.
Just because I don't have scars all over my body, or am bleeding doesn't mean I am not suffering. Invisible illness is often worse because you are experiencing things with no real evidence to show & prove them.
Going into the weekend, I hope to be around people who can make me laugh, who's company I enjoy and supportive. I will cherish every moment.
I then have to pack up and rest up for the trip down to Hemel Hempstead once again to work out what the next plan of action is. The journey is daunting to me. My health as we have explained above is not good and right now everything is challeneging. Long trips and the thought of further treatment - heightened pain is just a thought I can't bare at the moment.
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We can only keep fighting in the best way we know how and always giving 200 per cent.
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Here is the poem I sent to my local MP - Mr Ben Wallace.
Lyme-
Lyme, Makes you feel like you are being punished for a crime, How can one bite, Keep you up at night, The pain never easing, We push ourselves to keep pleasing, We crash and burn, Our boundaries we have to accept, adapt and learn, The bullseye rash I never received, By a tick I was deceived, From an athlete to barely walking, My only exercise is talking, Even that is hard, My efforts and strength I can't disregard, I need to help and prevent others from this pain, So more people and families aren't under this strain, The hell, The strain on me is clear to tell, My heart aches, The disease only takes, Doctors dismiss you as crazy, I refuse to be seen as lazy, I may not be able to do all I want to, Leaving me feeling blue, I can share my story and spread awareness, To put a stop to this life long sadness, People with kind hearts like you, Help us weather any storm the whole way through, Your support means everything, Awareness I hope to bring, The sadness and pain we feel, Is truly real, We all want to heal, From this ordeal, I have faith in you, To fight and help us get the message through, Doctors need to learn, To save the future burn, Of more of us becoming sick, From a tiny tick, Treatments, tests and research, For answers we must search, Many others would ignore, However you are willing to explore, To you I am most grateful, Truly thankful, For not dismissing me, Researching and willing to fight alongside me, In time we will make them see, We all deserve to feel free, Free from pain, Weathering the never ending rain, Let the sun shine, The disease me it will not define, The message loud and clear, Now is the time to face our Lyme fear.
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We fight on.
Love and peace
S
Xoxo