• Sophie Ward

Putting Our Burning Feet Down.

Demand. Demand. Demand!

They can call you crazy they can tarnish you with the same brush because it’s the easiest option. Unfortunately that is the way things are... the weak and poorly are left to fight for ourselves when we should be the ones recovering, recharging and resting. 

Yesterday, I told you how I couldn’t bare the thought of having to wait yet, another 16 hours without a proper meal.

Luckily, I got to catch you with the dietican before dinner. Unfortunately not before lunch and snack so they were just liquid. She wanted to keep me on liquids until this lunch time! 

I refused! I demanded a dinner last night and a proper evening snack. As I was going insane and the panic of starvation was worrying. 

Lucky for me there was a spare veggie meal. A quorn ( processed ) sandwich with a choice of chocolate bar and a piece of fruit of crisp and biscuits.

I chose the chocolate bar as it was milky bar and they were my fave back in the day! LOVE white chocolate. 

It’s was a dream to have bread again, it was always my weakness. But then for breakfast we got bagels ( love bagels and ALWAYS used to have one every morning when we were on the cruise ) and then sandwich again for lunch after having toast for supper snack.

It’s fair to say I was itching all night and feel like I can’t breathe.. like an elephant is sat on my chest. 

Everyone has been saying I have been quiet and look tired today. 

Each day is harder and more challenging to make conversation when nobody else speaks.. and I hate awkward silences. So when I don’t speak a lot people almost make me feel bad about it.

Like am I not allowed a day off

I’m dropping. 

They have run out of nuts and are refusing to get cashews nuts in as I am the only one eating them. 

Hence why they won’t talior to my diet they don’t want to buy in what I can tolerant - alomond milk, wheat & gluten free products etc. 

Because my intolerances are ‘intolerances’ and not allergies, so I won’t drop dead - they don’t care. 

My options are eat the food and feel ill or go back on the liquid diet, starving and still feeling ill?

Lovely options to have, ey?

My professor was so mad about them feeding me processed foods and refined sugars what the bacteria thrive on. 

As my Lyme symptoms have also got a lot worse but I have NONE of my Lyme med’s.

It came up in the meeting yesterday that 5 people had complained because the nurses were reordering their med’s and they were going days without important meds. 

With me they just don’t believe Lyme ...

Yet they think it’s okay to laugh at the fact my feet are burning .. ‘How that hell could you feet burn?’

You just want to wack some sense into them.

There is zero point asking for pain relief because I can’t even get that! I am denied that. 

If I really exercised my rights they would be in for a huge, HUGE shock. 

Well... after demanding that I NEED three meals and three proper snacks ( meaning food - we can’t say they are very nutritious)  

I have now moved to stage 2 B and will be reviewed on Monday ... once at stage 3 then that’s me. 

I need my Bioglan Superfoods, my nuts on demand, flaxseeds, chia seeds, freefrom products and the right MEDICATION!

I need to go home to recover from a place I admitted myself into, to recover!!! Believe it or not... 

Even now my temperature is up and I am clammy..

Yet I am running a temperature 🤒 to them it’s normal. So nothing is done. 

I am bound to be getting poorly when my body will now most probably be fighting itself.. ( another lovely thought.) I am not just tired from lack of sleep and pain but by the endless battles my body is going through.  

The nurse asked me how my mood was yesterday - I said not good. How can it be!  

She admitted it must have been emotionally difficult not having much food and energy. WELL YEAH!

Each day I say it - I know.. but I am literally at my wits end. I don’t know how much more emotionally and physically my body can take.  

I will finish on that point - as my eyes are too blurry, my mind truly fogged.  

After asking for a histamine 3 times and still it took until 3.15pm to get one. After them saying they would get me to see the doctor - that never happened.

Then the meal 🥘 for dinner was everything on a plate I shouldn’t eat.. my symptoms are getting so bad it’s to the point of swallowing tears.


#Lymedisease #Lyme #Disease #Illness #Chronicdisease #Chronicillness #Treatment #Hospital

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