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.

Hafsa

https://www.facebook.com/smilingwithgastroparesis

Friday, 12 February 2016

New Way Of Living... (TPN)

The Beautiful City Of London Was my Company! 
Hello!

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! 

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

Go and hit Like on the Smiling With Gastroparesis page! https://www.facebook.com/smilingwithgastroparesis


Wednesday, 25 February 2015

Challenges!

Hello Dear Readers!

I'm so sorry I haven't been on the blog! I have had many challenges on my path way. I hope everyone is doing as well as they can!

The end of last year and the start of this year have not been great! I have had many infections that I have lost count off causing me extremely bad pains. Both of my tube sites are still infected and am still taking antibiotics for it but so far have not helped! And I don't even remember how many time I have taken antibiotics either! If this course doesn't help then it looks like going to Hospital and being admitted for IV antibiotics!

But hey what's life without challenges?!!!

I'm proud to announce I have passed my Driving test and I am an owner of a shiny pink new card in my wallet! (driving licence).  I didn't think I could do it because of the above reasons always sick but I pushed on to every lesson and on the test day I was awful running a temperature! But I did it!

I'm also proud to announce that I have become a student ambassador for my university! which is exciting! I had my first interview ever for this post, It was nerve racking but fun at the same time. I met wonderful people that is a pleasure to work with. People that know me know that I'm very easily approachable with big smile on my face and always on the ready to make new friends!

Furthermore, I have become an assistant at a school teaching Psychology, Sociology and Humanities subjects on the day I don't have uni. The teachers I'm working with are amazing and have accepted me with two crutches that carry with me all the time! And I'm grateful that I wasn't discriminated against because of my illness. This is an amazing opportunity as I would like to be a teacher one day... who knows maybe even a head teacher...

One thing I would like to apologise for is that I have not been in contact with many of my friends you all know why! Thank you all for your support, kind words of encouragement and friendship!

Hafsa xxx

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


Saturday, 20 December 2014

Gastro What? Gastroparesis

Great News!

In a bid to raise awareness I decided to write an article about gastroparesis for Huffington Post and it had a massive response being liked 1.3K only on Facebook!
Click on the link to view it --> http://www.huffingtonpost.co.uk/hafsa-momin/gastroparesis_b_5855264.html

All my Love!
Hafsa
Thanks for the ongoing support!!!!

Saturday, 13 September 2014

Article in Huffington Post

My Article that I wrote (Acceptance of Chronic illness) has been published in Huffington Post!

http://www.huffingtonpost.co.uk/hafsa-momin/acceptance-of-chronic-illness_b_5806028.html?utm_hp_ref=uk-health

This is exciting news as this platform gives an opportunity to spread awareness for Gastroparesis, EDS and POTS as well as chronic illness in general.

More exciting things coming soon!!!

Hafsa

Saturday, 6 September 2014

Acceptance in Chronic Illness

Acceptance in Chronic Illness

It is known that acceptance of long-term chronic illness is seen as a substantial problem in patients with chronic illnesses. Absence of acceptance can lead to clinical improvements being delayed considerably. It can also lead to poorer adherence to the current and ongoing medical treatment. They may be branded and judged by others as being in denial.

The term acceptance in human psychology means an individual’s agreement to the realism of a situation (a chronic illness) by identifying a procedure or condition without trying to change it or protesting against something that can not be changed. The term of acceptance is familiar to 'acquiescence', which comes from the Latin word of 'acquiēscere' (to find rest in).

There are different types of acceptance but the one we are going to look at is Self-acceptance this is a person’s contentment, loving and fulfillment with themselves with who they are now. This is known to be extremely essential for good mental health. Self-acceptance is an agreement with an individual’s self of self-understanding to appreciate, authenticate, acknowledge your strengths and weaknesses and support who you are at this moment in time.

In the 19 years of my life I have been through a lot of challenges, specifically in the past 4 years. I’m extremely lucky to have had almost a normal life s some people are not that lucky. My whole world fell apart when I woke up one day and started vomiting uncontrollably; at the time I did not take it seriously neither did my Doctor. We all thought it was just a nasty bug that was going around.  Little did I know that I was in for a shock! As time passed I started to get worse. Fast-forward 6 months I came from school and fainted I was then taken to hospital and this became my second home.

I always kept a positive attitude and thought that this too shall pass; that this was just another everyday thing. As days passed in the back of my mind suppressed that this thing that my body had was far bigger than I thought. Yet I kept that though suppressed and denied it everyday of the 5 months I pent in hospital. Here I was a girl who went to school just like any other teenager, played all sorts of sports, helped my mum in anything possible to being bed ridden, never did I think I would need help in going to toilet but I did everything was done in my bed. While my peers, carried on their normal life. I too was once part of that. It is a human thing that we never think of what we have until we loose it. I lost my mobility, my ability to eat, to dress myself even the littlest things such as brushing my hair and teeth.

I was very angry with myself first at taking simple things for granted. I was angry at why I was lying in the same place in pain, agony, covered in tubes one down my nose to my Jej, that I constantly vomited; another from my arm to my heart giving me artificial nutrients keeping me alive yet that could have been the very thing that could have killed me it caused havoc in my body but I needed the nutrients as my weight was dangerously low. I was angry at being poked with needles multiple times through out the day not because it was painful but every needle reminded me of what I had lost.
Days passed theses things continued but I always smiled through it not because I wasn’t angry but because I denied everything that was going on. Doctors and nurses believed I was not in pain because of the fake smiles the laughter’s with my Dad that I put on a show for my dad because he slept in an armchair for 5 months continuously not leaving my side. I had to stay strong for him but inside when he would be asleep I would cry dry tears for the life I had lost. For the life I had now. And the life I could have had or never will have.  Somewhere deep inside I knew I had to come to terms with the fact that my life had gone from being independent to being completely dependent on my parents for everything.

At 15 I had to fight my way to make them believe that all this was not in my head. Who would believe a 15 year old? Especially how the media portrays young women. My Father. But I was never into those things I didn’t read magazines or watched much of TV and I was always trying to be unique and find my own path rather than follow others. Both my father and I fought hard to make them believe that this was not in my head. This was a dark time for us all. My dad had lost his job because he was with me; you can only take a certain time of work before they show you the door. My little brother who was very close with me had problems sleeping at night because I was not home. He would spend the day crying. My mother was pregnant so hospital was not good place for her. All this was a huge emotional roller coaster for us all! I was grieving and denying in secret having bottled up all my feelings after trying the nasal tube for the 10th time that day after constantly vomiting it out that bursted into tears that were rolling down my cheeks uncontrollably; they tasted salty. This was the only thing that I had tasted in a long time. All the emotions I had hidden and bottled up behind a smile exploded. I was grieving. 


We all go through grieve during sometime of our lives. Weather it is loosing a close family member, a pet or in my case my health, a diagnosis of terminal illness or a long-term chronic illness. Above I have mentioned some of the stages of grieve they include denial, anger, bargaining, depression and acceptance, abbreviated DABDA. This also known as the Kübler-Ross model. To find out more click here.  Every individual is different and will go through theses stages differently for short or long terms, as there is no wrong or right time limit. The idea was established for bereavement and terminal illnesses; it can also be applied to chronic illnesses.

Denial

The first stage, a reaction that follows after loss is denial; when the reality is hard to face we deny everything. In my case I always hid my loss behind a smile and denied that this chronic illness will be long-term and that It will not get better. I though that in the coming days it will get better and kept giving myself false hope. What this meant was that I was in such a shock that I tried to shut everything and everyone out of the reality I thought that if I kept smiling everything would be normal. I pretended that that it wasn’t real and tried to protect myself from the truth. However we cannot always stay in this stage at some point we start to question about our feelings and the situation.

Anger

The good old “why me? It’s not fair!” stage believe me when I say this I still go through this most of the time anger surges through my veins and when I’m in this stage I tend to lash out my anger at my family members. Though they understand why, this shows that denial cannot continue anymore. During this time I feel guilt at the same time for lashing out but we all go through this at sometime of our lives. Anger can mark itself in distinctive ways. People can be angry with themselves, or with others, or at a higher power, and especially those who are close to them. To those who are dealing with individuals like this should remember to remain detached and nonjudgmental.

Bargaining

This stage compromise of hope that the person somehow feels that they can reverse or undo what has happened to them somehow just to avoid a cause of grief. In this stage those with grief may say things such as “I'll do anything for a few more years."; "I will give my life savings if…"
. This is often negotiated with higher power. This is a normal reaction to feeling powerless and vulnerable. I have thought things such as “IF only we had reciveved medical attention sooner…” or  “If only my Doctor believed me…” or sometimes my father would say “If only we got a second opinion from another doctor…” This sort of a of weak wall of defense we put up in front of us to protect us from the painful reality.

Depression
The fourth stage is one of the appropriate responses to grieve and loss it is natural to feel sadness, fear, regret and uncertainty; this indicated that the person has began to accept his or her situation and paves the way to acceptance.  We all go through this stage where we feel as though “What’s the point… I’m going to die soon…” or “this will not get better why bother with anything…” individuals feel a void in them. When I’m in this stage I tend to block everyone out. I don’t pick up phone calls from friends and family and refuse visitors or going anywhere. Sometimes it gets so worse that I refuse to take my medication. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is in a way acceptance with emotional attachment.
Acceptance
In this stage a person begins to come to terms with their chronic illness, terminal illness or a death of a loved one and of that of unavoidable future.  "It's going to be okay."; "I can't fight it, I may as well prepare for it." This stage is different to each individual. This does not mean I’m okay but only that I accept my mortality. I still go through anger, denial, depression and barging- I’m only human.  I have good days and bad days. On the good days I tend to enjoy myself by doing my favorite hobbies such as reading, photography or going out for a walk. However on the bad days I don’t want to get out of bed, I cry myself to sleep and questions such as “why me?” arises in my head. I lash out at family members or confine myself to my room. Accepting is just like acknowledging a new norm. your norm was different before you fell ill to what it is now.
Acceptance has come to the point form me is that I want to help others in my situation and that’s why I tend to blog about it so that others will find that they are not alone.
Please share and leave a comment so that others can benefit from it too.
References:

"Acceptance - Types Of Acceptance." 8 Apr. 2009. Law Library - American Law and Legal Information.

Kübler-Ross, E. (2005) On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss, Simon & Schuster Ltd, ISBN 0-7432-6344-8
Santrock, J.W. (2007). A Topical Approach to Life-Span Development. New York: McGraw-HillISBN 0-07-338264-7

Shepard, L. A. (1978). Self-acceptance: The evaluative component of the self-concept construct. American Educational Research Journal, 16(2), 139-160.

Telford, K., Kralik, D., & Koch, T. (2006). Acceptance and denial: implications for people adapting to chronic illness: literature review. Journal of advanced nursing55(4), 457-464.

Zalewska, A., Miniszewska, J., Chodkiewicz, J., & Narbutt, J. (2007). Acceptance of chronic illness in psoriasis vulgaris patients. Journal of the European Academy of Dermatology and Venereology, 21(2), 235-242.






Hafsa :) xxx

Thursday, 31 July 2014

Olanzapine Vomiting and Retching Reliefer!

Hello Everyone!

I hope you'r all well (as best as you can be) and that your having a Good day/ Night.

Quick Update:

It has been a long time since I last posted on here, this was dues to me being feeling unwell after getting my new jejunostomy tube. The tube placement it self was not painful but I had to get used to the feed again from the beginning starting with 5mls/hour. I'm pleased to say that my feed rate has increased and gone back to normal of 110mls/hour and that I'm feeling much better! 


Good News! 

I will start with this quote from my Doctor "we need to stabilise the gut by stabilising the brain".
My consultant has seen many patients like me with the same problems, feeing tubes and have got them better and living without a tube. One extremely important advice he gave me was "don't loose faith!" He is the only doctor that has told me that  there is a life for me that does not involve doctors having to punch through my abdomen making holes to feed me through it and that is extremely important to remember.


My consultant said that he will start me on Olanzapine (Zyprexa).  Olanzipine is a sedating medicine so it will help me sleep and will help stimulates my appetite. It comes from a family of drugs called major tranquillisers and also called antipsychotic. He said to me its important to remember that he is not giving it to me because I'm psychotic; he is giving it to me because it just so happens that the brain chemicals and the area of the brain that it works very good at helping with retching used in patients who have serious vomiting problems to stop them vomiting. It is a drug he prescribes commonly with the combination with citalopram. It does not come in liquid form but come in tablet form that melts on the tongue in seconds. He said that I would have to take it at night time.

Furthermore, my consultant has been amazing and that I'm so lucky to have him. He says one advantage I have is that he has seen me quite earlier on in my illness; people struggle with this problems for year because they are told they have an eating disorder. when I was admitted in some of the doctors had written to him to ask if he is sure its not an eating disorder. He said he had to be quite careful not to be rude he doesn't think this is an eating disorder! (thank God! finally someone believes me! I'm not anorexic or bulimic!). The problem is that it has an appearance of looking like an eating disorder particularly in eyes of an untrained eye and it can even be argued with eating disorder experts that it isn't a typical one. he doesn't buy it he says "its to an eating disorder. Thats not how he's looking at it or treating like it. yaaaaay!!!! finally!!!! it was extremely good to here that. don't let them upset you don't let them put you off was what he told me! And that is really comforting.

There are a couple suggestions he was going to make they were: 
Firstly Olanzapine people may start looking at you funny because its used to treat schizophrenia -ignore them. I'm getting it for the problems I have not someone else. Increase citolapram with it. persevere with  it even if I'm retching it may take longer but will help.  Educate the doctors involved with me. That I must not be treated as though I have an eating disorder. he has seen people after 5-10 years stuck with the diagnosis of eating disorder. This is not an eating disorder! 

Fast forward 3 months! 

It has completely stopped my retching to zero! I used retch 10-15 times every half an hour! It has helped my nausea a lot to the point where I have stopped taking cyclazine! It has also helped stop vomiting not completely but has reduced a lot! I now only vomit when I eat! Also whereas before every time I ate I would vomit within seconds and now food stays down longer sometimes half an hour or one or two hours. Although at the end of the day I still vomit the for I eat it has been a MAJOR achievement! Positive improvement.  Its been magic!

I suggest all my GP sisters to go and try it out ask your doctors and maybe it will help some of you! My consultant has told me there is much more work to be done until I'm not dependant on the tube but we will get there. I will be seeing him next month and can't wait to see what else we are going to try.

Thank you for reading Please share this it may help someone.

Lots of Love Hafsa xxxx :)