So it’s just before 6 o’clock here in California and finally the nausea of the day has began to subside. It has been a hard day and the tears have been flowing by the bucket load. I think all of a sudden the enormity of the recovery journey ahead has sunk in. It’s going to take over a year minimum to see the big changes, although hopefully over time my symptoms will diminish or lessen in severity and my immune system might eventually do some of the fighting!
This illness has been a whole lifestyle change, and will continue to be even when eventually I go into remission. I am going to have to watch how far I push my body in the future, both in work and play as I just can’t afford (literally) to relapse.
This 6 week trip alone is costing an estimated £15 000, for fights, hotel, taxis, food, appointments and the array of costly medications and supplements are not cheap! To give you an example just the IV medication alone per day is £200. It’s insane, this illness is for millionaires, which I am clearly not! There are not enough words to describe how grateful I am for the money that has been donated so far. Without this treatment I would deteriorate and eventually probably die. These initial costs only cover the first 6 weeks of treatment. I will have approx £500 of outgoings a month for my medication once I return to the UK and I won’t be able to work for a long time either. There will have to be another trip out here too at some point and depending on my progress I may need further IV. It’s all if, buts and maybe’s at the minute, and I will just have to take one day at a time.
I hopefully have a good chance of recovering from this, but as I mentioned before there is no simple or easy fix, I really wish there was. All three of the bacteria I am suffering with are unfortunately really difficult to get rid of. They hide deep inside blood cells, and the bodies tissues and joints. They take on different formations and even build there own protective coating to try and avoid being killed off. Talk about perseverance! However much they try to multiply and thrive in my body, hopefully in the long run, I will manage to win this fight.
I have lost a lot of weight with this illness because of the effect it has had on my stomach. Right now I resemble a bag of bones and have so much muscle wastage. This is not helped by the viscous cycle of nausea which makes it really difficult to eat. Today I struggled to eat some chicken salad and a gluten free wrap through the tears, washed down with hot water, lemon and ginger! With all these tablets I need a hearty loaf of bread to line the stomach but this isn’t allowed with the new gluten free diet! I am going to have to force down food little and often, I need the calories and the strength to fight this through to the other side.
Well only the evening now to get through and then I can tick off another day! It’s worse than watching paint dry! I am a not so attractive shade of ‘pale’ and have some beautiful black rings under my eyes! I have had my 20 minute Epsom salt bath, and came out of that shrivelled and with massive tremors. This disease hates heat, but its tough as I have to detox as much as possible. The anti-sickness tablets have finally helped a little and copious amounts of lemon and ginger water are definitely helping. I will most likely spend the rest of this day horizontal but at least I have free wifi to keep me in contact with the world!
Tomorrow I introduce another new drug so watch this space… I am sure there is going to be some highs and lows to document!
5 Comments Add yours
Ahh Elly, this all sounds so traumatic and actually bought a tear to my eye reading this. One positive is you are there safe and sound and your treatment has started. Fingers crossed ur body reponds well to the drugs and one day u will feel a glimmer of hope and normality will begin again one day. Ur a strong girl and a fighter. My prayers and thoughts are with you xx
Laura aka Britney xx
Ahh Elly, Same thoughts as Laura really. What an awful thing you are going through. We so take our bodies and health for granted. I wish you lots and lots of luck and am sending buckets of positive healing energy your way. You have an admirable resilient outlook on this illness – keep strong and positive because that will have amazing power against this. You also have a fab family and love behind you all the way. Keep smiling. Lots of Love. Nadine xxxx
Stay strong Chantelle,sounds as if you are really going through a lot of unpleasant things,every day is another day to recovery.We are all thinking of you and wish you all the love in the world
Whilst I don’t know you Chantelle your daily battle is in my thoughts. Every journey starts with one small step, your journey back to good health started when you swallowed your pride and asked family, friends & strangers to help. In time your journey will be complete and you will look back at your achievements with disbelief. Always remember the key to success is taking that first step no matter how impossible or daunting the journey ahead appears; I think you have probably already realised that so God speed to a swift recovery and remember that there are many people out here willing you on in their thoughts and prayers.
Laura, Nadine, Shirley, Michael and Tim…Such kind messages, thank you so much for taking the time to read my blog/mini essays! I am doing my best to stay positive, and just attack this problem head on, and managing to follow all doctors orders! I know it’s not a great situation or illness, but it’s the hand I have been dealt, it’s not forever and what doesn’t kill me makes me stronger! Lots of love to you all. Chantelle x