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!