I know I am still sick but this past week since being back home from the USA, I just feel a massive amount of determination to not let this disease win. Right now I am so grateful for even the simple things in life and I just feel lucky to be alive and kicking even if I am still quite broken! The support I have received from people has been incredible, every message however small really helps to keep me going.
On the other side of the coin let me share with you that becoming so ill turns your world upside down. When you are unable to socialise or work you soon realise before you know it that you have lost more than a handful of friends. I am still not sure wether this is because people don’t know how to deal with this type of chronic illness or because they can’t understand how someone can maybe look well and still be too sick to party. That’s life of an invisible illness. Apart from the weight loss due to an additional H.pylori infection which has massively effected my GI tract, ‘I look well’. I suppose it’s times like this when you find out who your real friends are. Some you lose and some you have to give away. I have been both shocked and saddened at this reality, especially when during this time one longs for company. This illness is truly isolating. I don’t want a pity party or friendships out of guilt, I am just feeling reflective and am stepping out of he box and accepting that those who walked out of my life made room for all the lovely people who have walked in, what more could I ask for. It makes me happy to see people progressing with there life, but I am not going to lie there are times when all it takes is one more fun adventure photo or a new baby announcement to start the tears rolling. I feel like my life has hit pause whilst everyone else is on fast forward. Who knows when the play button will be pushed or how quickly I will catch up on life. When will I be well enough to build a career and follow my dreams? So many questions and unfortunately not many answers. That is the nature of this illness, so un-predictable, a world of the un-known.
On a positive note I also feel like I have gained a huge amount of support and guidance from a new group of people, an online community of other Lyme sufferers, also known as ‘Lymies’! Believe it or not we don’t just sit in a state of misery and mourn our past lives, well not all of he time! In fact many feel motivated to fight this disease, to help others unravel the complexities of diagnosis and treatment, and to do our best to raise awareness of this world wide problem. By using the internet sufferers can be connected from the comfort of their homes and realise that we don’t have to be alone. I have even had the chance to meet up with some of these inspiring people, even if it has been sitting opposite each other in a medical environment getting ‘prodded and poked’ with needles! I am happy to say I have also made some really special friends globally, that I know will last beyond my life with Lyme. Just imagine the mahoooosive party when we are all celebrating the return of our health, my excited face will be off the scale!