Its been the final day - for now.
Due back in two weeks time. For now though I can enjoy a two week break.
Today was again yet another challenge.
More testing, and reacting to foods you thought you were safe with is not easy to get your head around. Though when your immune system is so low and not only fighting a number of viruses but the viruses are changing the DNA in your cells. Changing the way you immune system reacts to everything. So even foods, fumes and materials can become an enemy to your body. This is where the vaccines and intolerance testing comes in. The tests find where your tolerance levels lie and make up vaccines to enable your body to tolerant these goods and not have them be rejected and seen as an enemy by the immune system and your body.
Re-testing every 3 months is so important. As when you begin killing off the viruses or stopping them from reproducing and becoming dormant your immune system can then handle the everyday products better. Due to it being under less stress. Meaning intolerance levels may now be lower and the vaccines will be altered to cater to your body's needs . Being strict on re-testing is also important because the immune system can become lazy! Meaning you will never fully be able to get your tolerance level down and it helps against relelapse. As if you do come down with another virus the body's immune system will be strong enough to fight it better.
None of this journey is easy. None of it. It is a living nightmare. It is so beautiful to see and hear all the amazing paitents at lunch time sharing their stories and all being so positive. Despite the pain, discomfort and sadness their disease causes them.
Due to Lyme -
Many have given up their businesses, homes, family members, friends, dreams, goals and careers. Purely due to being so sick and requiring on going treatment, that is neither cheap nor quick.
So many have been coming for years and spend months at a time at the clinic. Whether it's re-testing, testing, infusions or a bit of everything. It's long days and tasking weeks.
It was so pleasant to see the lunch tables maybe being Friday , filled with then paitents friends, family, boyfriends, children etc. All there giving their loved ones support and the pick up they needed.
All the patients whether from abroad or here are truly lovely, amazing people. It really makes you wonder what any of us have done so awful to deserve this pain and sadness.
Never did I think I would have something that at present has no cure.
Waking up in a morning and being hooked up to an IV for hours on end, all the med's you have to take religiously to avoid coming down with more viruses or viruses reproducing and becoming worse. Makes you question everything. I know it leaves me extremely upset.
I would never and have never played the victim. I'll take on any fight. But it really is hell and the fight isn't for the faint hearted.
Without my professor telling me - it seems that I could well be a patient at Breakspear for quite a large part of my life now. Simply to keep my Lyme and symptoms at bay.
Let's pray for a cure.
Today was yet another rough day.
Testing soy and asapargus - with end numbers of 8 and 6 was reasonable. My arm however is now bruised and learning how to handle the needle and vaccine was challeneging to me to remember. Thank god my Mum was listening.
I keep blacking out and not only do I not remember last night ( eating and getting back to the room ).
I don't remember a lot of this afternoon. I just remember the utter pain in my stomach and back from the infusions. Mama kindly tried to calm me down and help me through. I thought about travel trips I loved and enjoyed. Though I can't remember much else. Only getting my IV line removed and doing my vaccine.
I am still in a lot of pain. I can't explain how wiped out I am! I am exhausted. I feel so sick, dizzy and have awful pain.
I guess it's all part of the fun and games ey.
We have to make the best out of things - put of everything. I admit though this week has really challenged me and to enjoy life, appreciate life and still live have been challeneging. I have been reduced to an exhausted, stay in bed - bore.
Wiped out and no energy. Conversations, and parts of my days being lost - somehow.
It worries me - however I don't know how these moments happen. The nurses put me at ease telling me it's normal to feel so drained. However it upsets me when I am losing a pleasure in things I used to enjoy and love. This disease cannot take anymore from me.
So here we are - the end of the week.
All that is left is to do is have a lovely final evening though pretty exhausted, pick my vaccines up from Breakspear's freezer in the morning and take on the 5 hour drive home.
All needles, needle cutter, wheelchair and cushions are packed and in the car. Just the little last bits then homebound we will be heading.
Thank you for all the support this week.
It means the absolute world to me. I can't thank you enough.
Love and peace more than ever.