The Facebook status says it all!

Update from Mummy!

Friday lunchtime, another difficult morning, Chloe still in immense pain with the annoying addition of hiccups!!!

More urgently her cannula has once again blown whilst her anti sickness was administered, from a mums point of view it's terribly difficult and heart wrenching to see your daughter suffering and going through so much pain!!!

The OT and physio have finally been gosh we've only waited 11 weeks!!! The lack of communication is appalling why is it you constantly have to fight and stamp your feet to get anything done.

Chloe is so grateful for your support, messages and ongoing well wishes.  Unfortunately she is too poorly to update you today that why it's me.

I've told Chloe that everyday we will stand together and fall together but with Chloe's strength of faith, her positive thinking and will to get better we will get there.... We're just a little bit unsure of when.

At least the sun is shining....

God bless you all

Suze xx

Cannula change wasn't a pleasant experience.....

Well, I am struggling to update or talk to anyone because of the fact that my  body is filled with pain relief and my mind is totally worn out. I can make myself look reasonably okay with pretty filters and editing like this.... 

When the reality is Infact this....

I am so spaced out, because of the pain, and then I stop feeling spaced out when I have pain killers but they create a new sensation in my body that is just as weird!

I'm falling asleep whilst typing this because I'm just so weak from the pain. 

The rhuematologist came today and is going to test me for different things. I will try and say more about that before I have morphine tomorrow, or get my mum to post on here! 

It took 17 attempts to cannulate me today by four different people. This is the outcome: 

My veins are just not happy! 

Tomorrow I have no idea what is happening, I can't actually recall much of what anyone has told me today.

Thanks all,

Chloe xxxx

Back in hospital

Pain was out of control and possible chest infection. Mum called the doctor who said to come back to hospital and so that is where I am! 

Morphine muddled mind!

This is the face of my reality right now. Snuggled up surrounded by pillows as padding to try and ease the pain. I get up in the morning with great intentions for the day. But, by the time I am on the way back from the hospital I am in too much pain to function, I am exhausted, I feel sick, I fall asleep.

I stayed in the car fast asleep until gone 1.30 pm. I am back on morphine- Doctors advice. I just can't cope with the constant burning in my joints. The pain is hard to describe- it's like growing pains x 1000000000.

I wish this would all go away, I will admit, it's starting to wear thin. I don't think the morphine helps that though, when my mind is so cloudy it's hard to think straight.

I had a nice time at the river festival yesterday afternoon! It's just a shame I have to pay for it today. We aren't at the hospital tomorrow, but back Wednesday, at least we wont have to rush so much!

My eyes are closing as I type, so I better go...

Thanks all!

Chloe xxxx

It's tough, I'm not going to lie.

Days like today, when I'm totally exhausted- end up going to the hospital in my pyjamas, feel like bursting into tears at the slightest thing, feel weak, lethargic but angry at the world, they are really hard work. Not just for me but everyone around me. 

I am in a lot of pain in my legs and hips, Infact I have shed tears over it. I feel like my joints are burning and my calves are being stretched beyond a tolerable level. 

I feel sick, my abdomen hurts, I don't have the energy to do anything becUse my feed gives me enough calories to just about survive. This is tough. 

My family are exhausted, we have no time for anything but sorting me out, which is hard. My poor Mum physically can't take the strain if how demanding looking after me right now is. If I try and walk one day, it has a knock on effect in the pain and exhaustion levels of the next. I have people (that don't understand) telling me that I 'need to keep walking" but it is simply NOT that easy. When I walk I feel like I'm going to pass out, my legs cramp up and give way, it affects the rest of my day. 

I am too exhausted to drive round to Nanny's for a shower so sorry world- it will just have to wait. 

I think thank is enough moaning for one day. I just desperately need some suitable space so I don't rely on piggy backs that hurt my hips even more. So I don't have to travel to another house to have a shower. 

It's all so very hard. 

Exhausted is a HUGE understatement.

Hi all,

Sorry for being so absent, we are desperately trying to settle into a routine at home and that is not easy in the slightest. We have many factors to content with, the biggest being having to get to the hospital every morning...4 days down- We don't know how many to go! At least tomorrow, Monday and possibly longer but we shall see.

Another is that I am just. so. tired. I could sleep pretty much day and night if I was given the chance. My feed is 1500 calories daily, and I am used to living on more than that. My weight is going to have to be closely monitored because I am now moving around more than I was (okay not much) but I am still using more energy than I was lying in hospital in bed (getting in and out the car, trying to use my legs, sitting up more than lying down. It all equates to energy usage) and I was still losing weight quite often there.

I need a lot of help, which sometimes I feel guilty for as the whole house is running around after me. I hope that as we get used to things there will be a lot more I can do for myself, and even if I can't things will be done more efficiently and wont take as long so that it doesn't feel constantly like everything is about me. I am also a very stubborn independent person and that doesn't fit in with needing constant support! So it's all a matter of adjusting.

I went to Nanny's yesterday evening for a shower which is not ideal! We are lucky that nanny has a wet room downstairs. But getting me in the car, then out the car, getting me into Nanny's house, then have a shower (By this time I am irritable and beyond exhausted- and Mum is exhausted too) THEN get me back in the car, and out the car and back into our house. It just makes life harder than it needs to be.

Lastly, I am worrying about school work. My family and I are all paying for me to do an Oxford open university course and I am stressing that I am just not going to get it done. I don't have the energy to do it right now, and time is ticking. Do I stop now or do I try and cram all the work after my surgery? Advice on that one would be really helpful.

Thanks everyone,

Chloe xxx