I would say this week has been the toughest week of my life.
At no point did I imagine I would be sat in a room with two Drs and my mum and I would be begging not to be admitted to hospital.
More weight loss, deteriorating health, weak heart amongst numerous other issues left me with a question which I will never forget the Dr say – This is it, YOU either EAT or you DIE.
I remember being sat there feeling weak, tired, shocked and scared but BEGGING for them not to shut me away on a hospital ward. After an hour of discussion, they agreed to give me two weeks to gain some kind of weight and show them I am capable of managing this recovery OR the decision will be taken out of my hands.
I left the treatment room and went straight to the supermarket, shaking, I grabbed a basket and walked around the shop in a daze, crying. I grabbed every single food I have been so fearful of and threw it in the basket. Coconut Milk, muesli, roast chicken slices, brown rice, yogurt. Yep all pretty normal foods, but foods which are scary to me. However, there is always a BUT….
You see at this point, it’s not as simple as just eating. Due to the amount of time, I have put my body through starvation mode; I have fundamentally changed how it functions. I have pushed all of my organs to the extreme and they have adjusted every single cell and electrolyte in my body; I am in ‘preservation’ mode.
The next two weeks bring a very dangerous and serious time; The refeeding. Staying and being treated at home means I have put this ultimate responsibility on my family, typically in a hospital, I would be monitored every meal time with blood pressure checks, ECG, and general monitoring. I have to rest, any movement is expanding calories, calories at my weight I cannot afford to give up.
Refeeding can be fatal, the body goes into shock as food is processed and already weak organs are put under pressure to perform and process this strange substance they have not had to deal with for a while – FOOD!
The irony is I have to eat but I cannot eat too much. My daily calories are increased so very very slowly and at the same time, I have to deal with stomach issues which are so impossibly awful I just cannot explain.
Blood tests every other day carefully monitor how my body is handling food, one small fluctuation or change could mean admittance to the hospital, so you see now I am eating the illness really starts to show its true colours.
Our first scare happened at 4 am on Wednesday morning. After the first day of increasing my calories, I went to bed with an awful stomach ache and a racing heart. I did not and could not sleep a wink. My heart was beating so fast, I felt wired. At 4 am things got worse and I found myself, sick, dizzy, dripping with sweat and faint. I led there with my mum sat next to me on the bed with skin as yellow as a minion.
The refeeding had started to hit me. I craved salt like nothing else I have craved, so at 4.45am I ate a bag of ready salted crisps. The salt tasted like PURE GOLD and within 20 minutes I started to feel a bit better. I begged my mum not to call the hospital as I knew they would take me in!
Imagine how scary this feels. I had hardly increased my food intake but already the issues were apparent. The next day was spent speaking to the hospital, chasing for blood test results and researching online trying to find out what cravings mean and are we treating me in the right way?! We are having to learn how to handle all of this by ourselves.
We have both become experts in ready test results, my mum frantically checking each result against a checklist; knowing the reality is that any change will mean she has to forcibly take her daughter to the hospital where she will be admitted against her will.
I cannot imagine how that must make her feel. Of course, I feel guilty for adding this pressure to her, the successful career women who already has enough on her plate; but the truth is I need her now more than ever.
Yes, I should be in the hospital where they can monitor me and ensure I am refeeding in the right way, where I am checked every hour or so but I cannot give into being admitted, I cannot be held captive in an environment I know will just zap whatever life I have left.
The clinics are amazing and do an amazing job, I just want to do this at home surrounded by familiarity and my family. I am clinging on whilst I still have a choice.
We are day three into refeeding and it is tough. Mentally, physically and emotionally. I sleep, cry, eat, sleep, fidget, and eat again. The tiredness is overwhelming and I have to give into resting. Although my mind is sharp and active my body is weak and tired.
The year of stability and recovery has started and it is way harder than just taking a bite!
Today as I head off to another blood test, I do so with a positive mindset.
The journey has finally started, the switch was turned on and the light is shining BRIGHT and CLEAR. I am not making any promises, we still have a month of careful refeeding and all the emotions associated to deal with and then comes the issue of dealing with how my body is and will change.
Weight gain means one step away from being admitted, yet it goes against everything my disease wants me to do.
I am going to catalogue pictures of a few of my meal times, I want to see from Day one how they improve and change over the next few weeks and months. This was my first refeeding meal, needless to say, it almost landed me in hospital…….
I want to eat in restaurants, enjoy breakfast in coffee shops whilst reading a good book, take afternoon tea because I can and just revel in the joy of a Sunday dinner with my family.
For now, I carefully and slowly eat, renourish, restore, rest, hope……..and wait.