Saturday, 19 November 2016

Chronically Invisible: Dear Society!

Dear Chronically Invisible Patients,

"You are all Superheroes fighting big battles! 
With courage beyond your years! 
And show others the meaning of unconditional love! 
Your stories teach others to endure, to face challenges, to love selflessly 
and find the strength we all have within. 
Your love extends sunshine warming all those around you!" 

Dear Society,

Shockingly, about 15 million people in England have a long-term condition (Department Of Health (2012). Long-term conditions or chronic diseases are conditions for which there is currently no cure, and which are managed with drugs and other treatments. Sadly, according to WHO Chronic diseases are the major causes of death and disability worldwide.

"How are you?"

"I'm okay, thanks." This reply is so much easier to say than to explain why we are not okay. Which is everyday.  We have trained our tongue so well that without even thinking, the words automatically come out before we even have processed what they have asked us. A reason for this being is that many times when we have told people how we actually feel they pity you for the rest of your life. You become the illness. Not a person.  Some people regret even asking you in the first place. So to keep everyone happy the automatic response seems reasonable.

"But you don't look sick!"

A remark thousands of people with invisible illnesses are subject to.  Most of us in this community are too nice, we just smile and nod, some may even say its just comes automatically to us or that we have heard it a million times.  Perhaps a response that is in some of our heads that would make people think would be: " Please do tell me, what does sick look like?" "I will make sure to satisfy you and try to get it right next time!"

This remark doesn't just come from our family, friends, and strangers but also our trusted doctors. A simple reply of theirs would be "It's all in your head!" and send you away home without a second look. I ran a Facebook page and Facebook groups, which has hundreds of members most of whom have been told this by professionals. This leaves us in more distress and some even start to believe that it may be in their heads after all. Many of us continue this fight even after we have been diagnosed with a chronic illness especially in A&E/ ER when all you're information should be on the system but they still doubt you.  That is one of the hardest parts of being chronically ill.

The worst thing you can do to someone with an invisible illness is to make him or her feel like they need to prove how sick they are. 

"My cousin's friend's, sister's uncle's, wife use to have that. She did this and that and that and now she is perfectly fine. You should ask your doctor that too." The number of times we hear this is unfathomable. Yes, we know you mean good but please stop comparing us to others. For most of us, it is a life long illness that does not have a magic cure. Yes, it is great to stay hopeful and faithful for future advancements in medicine but it is kind of hard when you are told there is no cure.

Have we come to a point to where we need to put a label on our foreheads to say we are unwell? A
common everyday problem is parking in the disabled bay. We may not have wheelchairs but does that make us less disabled? The cynical looks you get. The whispers you get. The disgusted looks you get. All this really makes you wish you had a label permanently marked on your forehead. I know people in our community who suffer from falls just by standing up. As they stand up their blood pressure drops and their heart rate increases, so the body's response is to fall flat so it can accumulate for this. Others suffer from dislocations and subluxations by simple movements. Some may even have a small bag with them (you may think what does a small bag have to do with being disabled?) don't be too quick to judge! That small bag they have with them is their lifeline! It can be either a machine to feed them through a feeding tube or an oxygen machine to help them breathe. So do we really have a right to say to tell someone that they are not ill? This is in no way to say that those in wheelchairs are less important but only that we should not judge a book by its cover.

Funnily a friend of mine had a deliveryman deliver her TPN (Total Parenteral Nutrition) and his first words were:
"Is this for you?"
She replied "yes." You can guess what he said afterwards...
"You don't look like a person who will need this." Now, we don't blame him for saying that, but it does get tiring constantly being told this. There is a lack of education about chronically invisible illnesses and lack of awareness of it. You can now see why they are called invisible illnesses.

We are not being rude or shady, we are just so awesome that even our own immune system can't get enough of us. It simply does not want us to be shared with others. It just wants us for its self.  Who doesn't want to go out with their friends and have fun? It is human nature to be around those you love and wanting to spend time with them. But being chronically ill these little joys in life are not so easy. I may be okay now when I have told you I can meet you but 2 minutes later things are not so certain. I guess what I'm trying to say is that we can't make plans not because we don't want to but because it is out of our hands. So please be patient with us. The worst feeling is not being able to keep a promise to your friends and backing out in the last minute or not even being able to plan in the first place. This sort of guilt eats us away.

Just because you can't see the symptoms doesn't mean they are not there. Most of us want to be constructive members of society but society seems to be irritated with us because we look 'normal'. But we ask you this: what is normal? I will leave you with this message. Illness knows no limits. It does not respect one's age or attitude. It simply says I will change your life but no one will ever know.  We may not look sick, but turn our bodies inside out and they would tell a different story.

Don't Judge. Be Kind. Be Thankful.


Friday, 12 February 2016

New Way Of Living... (TPN)

The Beautiful City Of London Was my Company! 

I hope everyone is doing as well as they can! xxx

You might be wondering why I have named the title of this entry as New Way of Living? Well over the past couple of months I have had many challenges. 

As many of you know I am completely dependant on a Feeding Tube, well what happens when that Feeding Tube decided to beak in half and fall out in the middle of the night? 

I woke up in the middle of the night drenched in my feed. I was so worried that I thought I had wet myself (which has never happened) but there was a much bigger problem waiting for me. I lifted my night shirt up and quickly realised that the jejunostomy had broken in half. Half of it was inside me the other half fallen out. So my initial response was to keep the stoma site open at any cost. I tried to push the tube back in to the stoma site but boy was it painful! It would not go in, the stoma had closed. 

So I emailed my Consultant (who is the most Amazing consultant there is!) and he emailed me back first thing in the morning instructing me on what to do and would be expecting me in A&E. I am so thankful for the NHS and the wonderful team of Doctors, Nurses, Porters, Cleaners... for their hard work and dedication! I went in early in the morning and was admitted in at midnight. They couldn't do much except to keep me comfortable and hydrated.

Fast forward my PEG had too become infected badly. I was taken down to surgery to get it removed and to place another jejunostomy. All is not very difficult as I have had done it many times before. 

But boy was I wrong! 

As soon as I come out of theatre I was in so much unusual pain (not the normal pain that I usually have with this surgery) by the evening I was spiking temperature of 40°C and sometime above. And then there was a lot of blood pouring out of the tube, I started to get worried, the nurses got worried too. I was given medication to lower the temperature but it did not help. It was one hell of a night and little did I know that many more were to follow. In the morning we removed the dressing and it was horrendous! the insertion made, the new and old tube site were full of puss and obviously I had caught an infection. I had excruciating pain in my lower tummy too. I could not move. I could not breath with out it being painful. I had never experienced such pain. 

The Insertions stitches had started to open and as everyday went by it would open even more!  By the third day it was an open gaping mouth full of puss. The new jejunostomy was taken out immediately. I started getting treated for the infection with 4 different types f antibiotics. the infection had travelled deep into my body. The temperatures never came down. I was feeling very weak. I had thought that I knew pain. but  I was wrong.  I had lost a lot of weight. They were not going to do any surgery on my tummy so I had a PICC Line Inserted in the hope that when the infection clears I will be put back on the Jejunosotmy. I had puss collections all over inside my tummy. 

Then after a few days the pain went away so they stopped the antibiotics. what a terrible decisions they had made, because a day later the horrendous pain shot back in. Worse than before. As soon as my temperatures came back down I was taken own to get a Hickman line inserted to my heart. This was to be a new chapter in my life. 

I was told that the infection is ferocious and that  I would have to go home with a Hickman Line and having regular antibiotics. I started to get trained on how to use a Hickman. Let me tell you something being told that this you're last option at keeping you alive is a scary thing. Especially when this come with much greater risk as it sits in my heart. I though I had changed my life style already for the jejunostomy and PEG but little did I know that I had to change it even more for this little lad. 

I have had to differ my last year of University due to this and that was the hardest decision I had made! Anyone who knows me knows how much I love education. I thought this illness had already taken a lot from me but hey it wanted to take this away from me too.But I am more than determined to finish it! evermore so! 

Fast forward... I am now fully trained on how to use and have gained my weight back and am having a much better quality of life with this tube because I haven't experienced pains such as my old tube ones from this tube. My Consultant was very proud of me for sticking to and trying over and over again with the other tubes. He had said we should have given it to you earlier but hey at least I tried my best. Knowing this is my last option staying alive haunts me everyday. However, we cannot allow it to stop us from living our lives to the fullest. 

Living with illnesses like this everyday I am reminded that life is very short. Something so small can kill me. 

Here is to Brighter Days! 
Only recently, I was about to get ready to start my TPN feed and something in my mind told me to check my phone. And I did. I had one missed call and one voicemail. I checked. They had said that my TPN bags were contaminated and that if I had taken any I had to go to hospital and tell them how much I had taken. In that mili of a second I was saved from unforeseen disaster. All I have to say is just be thankful for what you have. Be grateful for life. 

I will be writing an article for the Huffington Post and you can decide what it should be about! Just leave a comment to be a part of raising awareness. 

Sending my Love to all of you! 

"A Smile Cures Anything!" "Making the Invisible Visible!" 

Go and hit Like on the Smiling With Gastroparesis page!