Fundraising and Research Projects

Apart from just raising awareness, the other part of the Well A.R.D group is dedicated to fundraising. So I thought todays post I would concentrate on this and tell you all about the research program that the money will be donated to 🙂

I did a tonne of research over about 6 months, trying to find a project in the UK that focuses on Adhesions/Adhesion Related Disorder. This turned out to be a lot harder than I ever expected, but then it just goes to show WHY there is such a lack of knowledge on the subject! I emailed every hospital I could find, contacted the Royal College of Obstetricians and Gynaecologists, even emailed the Health Minister and not one of them could provide me with any information of such a thing. In the end it actually turned out that the simplest contact was to be the most useful! I emailed my own consultant, Mr Guyer, at the Queen Alexandra Hospital, Portsmouth and explained what I was looking for. He gave me the contact information for a lady called Ying Cheong, who was previously a  trainee of his. She had gone on to work at the Fertility Unit at the Princess Anne Hospital in Southampton. She had become a Consultant in Obs and Gynae, as well as Senior Lecturer in the same subject. She was now leading a research program at the hospital into Adhesions.

I contacted her straight away to explain what we were trying to do and to see if she would be interested in getting involved, or at least letting us make donations.
She was so lovely!! and more importantly willing to help in any way she could, as well as being more than grateful to accept any donations that we wanted to make.

She then went on to send me the full outline of the research that was currently being done ( you can find this information at the bottom of this post).

It’s mad that there is not more research going on, BUT it was also very relieving to find that there is at least SOMETHING being done. If we can help in any way, then that’s exactly what we will do! At this time we haven’t started the fundraising, as we have been concentrating on setting the organisation up first but rest assured once that has been done then we will be pulling the big guns out to raise as much as we can!

Here is the link to our Facebook page with all the research information: https://www.facebook.com/groups/WellARD/561866957213276/

 

***If anyone would like more information about this project, research or anything else Adhesion related please feel free to contact us at: adhesionawareness@gmail.com***

 

 

 

 

Guest Blog: Working with ARD

Today’s blog has been written by fellow ARD warrior, Gemma, about her experiences on living and working with adhesions, and the problems that are faced in the workplace……..

I’m 34 and suffered with chronic pain for 14 years on and off (had some surgeries which brought temporary relief from pain). This pain is caused by internal scar tissue (adhesions) which are as a result of numerous abdominal operations (7 in 14 years).

I work as a medical secretary within the NHS, so you would think that they would be supportive of someone with a chronic illness, especially of someone who is wanting to work. But in fact, recently I have found the opposite to be true.

People ask me why I continue to work when it’s such a struggle for me every day. And wouldn’t it be easier to give up work and claim benefits? My answer is simple, I love what I do, it keeps my mind active even if my body isn’t. It also distracts me. I’m not sat at home 24 / 7 thinking about my pain or getting depressed about the things I cannot do.

The problem I have though is the Sickness Policy that the NHS uses. Allowing only 3 periods of sickness in 12 months (this being 1 day or 1 month, either is classed as a period of sick). Should this target be reached then you are progressed through the “Sickness Management policy”, which they claim is there to offer support, where in reality it causes more stress, and as anyone with chronic pain knows, the more stress you experience then the higher your pain levels increase.

Another part of this policy is the long-term sick, so if you have more than 4 weeks off, once again you are progressed through this policy.

I recently had major surgery and was off work for 4 months to recover, I was progressed through stage 1 and 2 of the policy and then informed that if I did not return to work the following week then I would be progressed to stage 3 of the policy and dismissed.

This sounds all very unfair but this is a nationwide policy within the NHS, to bring down sickness levels and thus improve work attendance, however, people are being dismissed for being off sick and this is now causing people to go to work when they are still unwell, creating a fresh set of problems.

Because I am stubborn, love my job and refuse to give up, I am fighting this and making my voice be heard, not just for me but for everyone who has been unfairly treated through this policy.

I want to work, yes its a struggle and I know there will be a day when I can no longer work, but I want to carry on as long as possible. Surely there should be support for people like me, who want to work but may need the occasional day off because the pain gets too much. I’ve been told I am unable to use annual leave for these day because then my sick cannot be monitored. Sometimes it feels like I am talking to a brick wall.

Although chronic pain is classed as a disability, because it’s not visible and because it’s not life threatening, it seems that many don’t think allowances need to be made.

I’m not asking for anything unreasonable, I’m not asking for endless days off sick, but surely employees should be able to take time off work, if genuinely unwell without fear of losing their job. Especially within the National Health Service, an institution that is there to improve people’s health and general wellbeing.

Through The Keyhole

With adhesions, there is only 1 definitive way to diagnose them. They won’t show up on ultrasounds, or any other kind of scans. Blood tests and urine samples won’t give any answers. No examination either. So the only way that will diagnose 100%. Surgery!

A laparoscopy is an investigative surgery, nowadays generally done through keyhole procedure. What does that mean in layman’s terms?? Well here’s a rough guide to adhesion surgery;

Keyhole surgery involves having 3 small cuts made, as opposed to the olden days when they would cut you right open.  The cuts are roughly an inch wide, if that! This is good for a few reasons;
1) You are left with minimal scarring
2) The healing process is much quicker and safer
Once these incisions have been made, they then fill your abdomen with gas. This gives them room to see what they are doing, and more room to move about. The down side to this though, is the aftermath. The gas goes in…….so it has to come out! For a few days after you do have the constant farts! It can also make you feel quite uncomfortable, and almost like you have indigestion. One thing I found that really helped with this is flat lemonade. I’m not sure how or why it works??? But it does lol!
Ok, where was I? After your stomachs been inflated, a camera is then passed through into your abdomen. This is when they have a good look around, and how they can see if and where you have any adhesions. 9 times out of 10, if they are found, the surgeon will remove them if possible at the same time, instead of leaving it to another operation. For any surgeon though, this is a very time-consuming job. I remember being told before one of mine that I should be in theatre for around 45 mins. This was a 7:15 am. I remember looking at the clock when I was brought back up to the ward and it was 11:45. This gives you a rough idea of how long it could take! It’s a very fiddly job and as adhesions can be stuck to pretty much anything, a good surgeon will take their time, as they don’t want to damage any other part of you, or any other organs.
Nowadays, there are now ‘Adhesion Barriers’ available and are used once the adhesions have been removed. This is a liquid that is left inside your abdomen. If the adhesions regrow, this barrier coats your insides and is meant to prevent any sticking, which is what causes the problems. Unfortunately they are not 100% successful yet.

So this is a rough idea on how adhesion surgery works. Any kind of surgery can be extremely daunting and scary, especially if you have no idea what’s going to happen.
I have been pretty lucky that my consultant went through everything with me before hand and told me exactly what was going to happen, yet I know that not everyone is that lucky and can be chucked in at the deep end, with no explanation what so ever.

***I would like to state that I am not a Doctor though, and have no medical education. This information has been provided from my own experiences. Every surgery is different, so this should not be taken as set in stone***

Introduction to my book…..

After a long think, I have finally decided to put my story down on paper, and write a book! There is only 1 other book in circulation, that I know of, but it has been written by the parent of an ARD sufferer. So it’s about time that there is something from a ‘warriors’ view, something that tells it exactly how it is!

It may take a while because I want it to be perfect and if my posts on here are slightly less, it’s only because that’s my main focus at the moment. I will do my best though, to still be posting regularly.

I have been writing for years now and have found it to be very therapeutic. If I’m having a bad pain day, or just feeling down, writing can help to get all the emotions and frustrations out, and it really helps. Everyone has their own way of dealing with things, and this is mine.

The feedback I have had from this blog so far though has been amazing! The comments have been humbling! and the support has made me realise that a book may actually be possible.

So thank you to everyone who has been reading and given me such lovely comments and for filling me with positivity!

Here is just a very small introduction that I have written so far…….

When you’re a child, the world seems such an exciting place. Life has endless possibilities. You are full of hopes and dreams, so many ambitions that you’re unsure of even where to begin!
You’re protected by loved ones, from all the bad that surrounds you. Not once, though, do these dreams ever feature pain and illness.
This was me. I was an average young girl. My priorities were my friends, what tunes were on the radio. My family drove me mad, but I still loved them to bits.
I was happy.
So who knew that years later, my whole world would be turned upside down by an ‘invisible illness’ and it would change the person I was to become. That nothing would ever go as I had hoped or dreamt……. 

Missing out on lifes biggest blessing

As with any illness, the symptoms can be pretty hardcore, and life changing. This is no different with ARD. The list is endless but I wanted to concentrate on one, specifically, today as it’s the one that I have found the hardest to deal with.

INFERTILITY

I was one of those little girls who was constantly dreaming of meeting my Prince Charming, having the perfect wedding and then going on to have the perfect children.
So when, at 21, I was told that this may never be possible, I can honestly say it felt like someone had just reached inside my chest and ripped my heart out – no exaggeration!
As a woman we take it for granted that we will be able to reproduce, after all that’s our job isn’t it?

Now in my case it isn’t completely and utterly hopeless (or maybe I’m just being too positive). I had to have one of my fallopian tubes removed because of the damage that the adhesions did. I was left with one, but that too had been pretty badly damaged. But 1’s better than nothing right? I also do still have both my ovaries, although they are buried in the depths of more adhesions, but still having them is better than not!
What it does mean though, is that my natural conceiving chances have been more than halved, but with IVF, I’ve been told that it shouldn’t really be a problem.
Who ever grew up thinking that their babies would be created in a test tube though, instead of through love?

When all of this first happened it hit me hard. I was in a long-term relationship, and I remember when he turned up at the hospital after my surgery, all I could do was to keep apologising. I honestly felt like it was all my fault and the guilt was awful. I was lucky that he was so understanding, and although things never worked out in the long run, it’s one thing I will always be grateful for.
After that I found it really difficult to be around babies, pregnant people and children in general. It was just a constant reminder. What made it even worse was that friends and family seemed to suddenly become scared of me. Thinking that if they told me they were pregnant, that I would turn into a complete mess. Ok, maybe the first month or so I probably would have but the last thing I would ever want is to put a dampener on someone’s exciting and wonderful news. It got easier, though I still get occasions when I find it hard in certain situations. I recently had to pass up on my cousins baby shower because I just didn’t feel that I would have been able to cope with it all……..yet I hate myself for doing that!

The worst part of it all though, was the feeling of no longer being a ‘real’ woman. The one thing that women are meant to do, and now I may not be able to even do that. I have had people tell me that, that I’m not good enough and at first, it was devastating! I have spent way too many hours crying over vile comments, wondering if they are right? Am I really a waste of a woman if I can’t produce? The thought does still cross my mind at times. I don’t think I will ever feel 100% woman but you learn to deal with that over time.

It’s now been 8 years since they first told me the news, and I have seen fertility specialist and Drs to find out about my options, and the way I see it, is that all is not lost.
All I have ever wanted in life is to be a mother. That has, and still is my number 1 aim and nothing and no one will ever stop me, not even my own body!
I am hoping that it is all part of a bigger plan, that I haven’t had children yet because I haven’t met ‘the one’…….and to be honest I am actually so so glad that I haven’t had children with my exs, I would be tied to them forever then haha and I really do not want that!!

When I do finally meet the person I know 100000% that I want to have children with, who knows what will happen?
And what is wrong with IVF or any kind of treatment??
I would quite happily do anything, to be able to have the chance to feel such a precious gift grow inside me, and then spend my life watching them grow into their own person.
So I will always stay positive! Negativity will never get you anywhere.

I just need to find that Prince Charming now…………

*Update*

They say that when you have adhesions, they only hurt if you eat, drink, sleep, move or breath………
I would agree with that today!!

The worst thing about the illness is that you never know when it’s gonna rear its ugly head? So the fact I’ve had a good few weeks ( for an ARD sufferer that is ), I’m not impressed that today is not one of those times!!

Stress is never good for anything, but I have found that it’s especially unhelpful in adhesions. I’m quite a tense person……in a body sense. I can always feel how tight I am and have to remind myself to relax. This is just on a normal day for me! It would make sense then, that when you have any other kind of added pressure, its your body that bares the brunt of it…..and in my case my abdomen and pelvis.
After a pretty stressful afternoon and evening yesterday, I woke up this morning to the feeling that my whole abdomen had been stretched! To be honest, this is normally the case, but today, after taking my pain relief and moving about a bit, it hasn’t eased off 😦

It’s so hard to describe the feeling to someone who hasn’t felt it but I’ll give it a go anyway; Imagine you were to wake up and your legs had fused together. Not so much that you couldn’t move them at all, but enough that when you try pulling them apart, you can feel them ripping……..yeah not nice!!!
The internal organs are designed to move about freely in your body, but having adhesions restricts that movement and fuses them together and other body parts. This in turn causes the ‘ripping’ when you move or when the organs have to move, ie due to general body functions.

So anyway, my plan for this morning was to go to the gym. Normally I could handle a certain amount of ‘tightness’ but not when it’s like this ( I’ll be doing a separate blog on Exercise and ARD later on in the week ). That put me at a loss, cause I hadn’t actually worked out what my plans were for after the gym.
Instead I have spent the day trying not to move, trying not to breath and generally trying not to do anything that will make the pain worse……and it’s typical that its blue skies and sunshine outside! If i had a garden I probably wouldn’t mind as much but I don’t, so I’m stuck in my little flat, feeling decidedly sorry for myself!
Anyone who says that they are constantly strong, that they tackle it head on with constant positivity is LYING!!!!! I’m sorry but you can’t deal with every illness or such like without having some episodes of negativity and feeling like ‘woe is me’. We wouldn’t be human if that was the case.

Now the day’s halfway through, and I’m slowly getting some slight relief ( thank god as I need to go get food and toilet roll!!! )
Needless to say, though, that this day has been a right off! Let’s hope tomorrows a better one……and that the sun’s still shining!