'But you don't look sick...'

' You don't look sick'

Many people often say 'Well you don't look sick' which is a compliment but when you feel so poorly it can be so frustrating. So I just thought I'd make a short blog post on the day to day life of someone with a chronic illness or someone in chronic pain.

So I may not look sick but I'm currently in hospital trying to get all the nutrition I can as I need this nutrition to stay alive. I'm currently needing IV (into the vein) steroid anti sickness to help my nausea, morphine and more for my pain and needing several drips just to keep my hydrated, I also am getting 3/4 hours sleep at the most due to the pain I am suffering from the nutrition I need.

'I may not look sick but a few steps send my legs to feel like jelly'- this quote is so true, earlier I went for the walk and I reached the lifts just next to the ward and i was already exhausted. Just because I may not look sick,doesn't always mean I aren't sick.

'I may not look sick but something as simple as a dose of paracetamol can cause agonising pain'-

 this is another true quote, something as little as 20ml of paracetamol straight down my tube into my small intestine can cause me awful pain,  this isn't how a once regular teenager should spend her life'.

'I may not look sick but I suffer from an extremely sensitive heat intolerance' , 

this can cause me to faint from something as little as a bath or even standing near heat'. Due to this condition I could even pass out/faint in a room that feels like a normal temperature to you. 

'I may not look sick but every hour or everyday I'm fighting chronic pain' every minute of every day I'll have some sort of pain whether it is mild, moderate or severe. I get a wide range of aches and pains in my body, ranging from the top of my head down to the tip of my toes. 

'I may not look sick but the smallest sip of water could make me awfully sick' due to a condition I have called Gastroparesis (paralysis of the stomach), the smallest bit of oral intake can make me really quite poorly.  This is why I am tube fed as I can't sustain my weight and can become severely malnourished without my tubes.

These are just some of the examples I get on a day to day bases and although I may not look sick, looks can be deceiving! You may walk past many people daily who may be sick but you cant always tell by a single look. So think about what others may be going through before you judge them. 

'Behind the scenes'

I thought I would do a post on 'the reality' of been sick.

I have a huge list of conditions including Severe Gastroparesis,  Severe Gastrointestinal Dysmotility, Dysautonmia, Postural Orthostatic Tachycardia Syndrome, Chronic Lung Disease, A Kidney Disease, Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, Small intestinal Bacterial Overgrowth, Leaky Gut Syndrome and the list goes on. 

I'm sure many of you have seen my Instagram pictures, baking in the hospital, riding on IV poles, meeting best friends, wearing cute pjs, nurses plaiting hair, lush baths, pamper days, Starbucks, daisy chains in the park, meeting famous people, crafts, and more. These are just the highlights but the reality is very much the opposite.

The reality and negative parts of my hospital stays are:

• Being too weak to get out of bed.
• Bed baths.
• Not being able to move with pain.
• Infections.
• Sepsis (life threatening infection).
• Vomiting.
  
  
  
  
• Bed sores
• Being bed bound for weeks
• Medication side effects
• Allergic reactions leaving me paralyzed
• Theatre trips
• Surgeries
• Weeks on Ketamine and morphine
• Blood pressure, heart rate, oxygen levels and temperature every 4 hours even in the night.
• Many cannulas
• Needing cannulas done at 4am
• Having to see doctors in the middle of the night.
• Oxygen
• Feeding tubes
• TPN
• central lines
• SATS dropping
• screaming with agonising pain
• Infusions
• Catheters
• Blown veins
• Doctors nearly having to shave your hair for IV access
• needles
• daily bloods
• countless medications
• Tests
• procedures
• dehydration
• malnourishment
• underweight
• Loneliness
• Isolation
• Home sick
• and so much more.
  
  At one point I was so home sick I couldn't even go on my phone to message my family because I would just cry as I wanted to be at home so bad! 

Not many people realise the reality of hospital stays, many people just see the positives, I don't tend to post the negatives for many reasons but what you think hospital stays are like is not the reality and unless you have been in hospital whether its a long stay or a short stay you will understand.

I have had many horrible experiences in the hospital like many people! I have been very poorly and also had not very nice things said, like before I was diagnosed I was getting told it was all in my head or it's mind over matter which is so frustrating when you know it's not. As many of you know I have also battled sepsis which was a very hard time which I don't really remember because I was on such strong drugs. I have memories from hospitals and met some amazing people but the negatives deffinatley out weight the positives.

my oxygen level and heart rate

The only people that truly see the struggles in hospital are your family, friends, nurses and other patients. There are many struggles you have to face in the hospital, no one see's the isolated and lonely times, the days where you are fed up, no one see's you crying and begging to go home when in reality you know you aren't well enough. There are many more 'behind the scenes' to been in the hospital, some I may not wish to share, but this post may give you a little more understanding.