Sorry I’ve been away

First off let me apologise for my lack of blogs recently. As with any illness, you have rough times, and unfortunately I’ve been going through my own lately.

My pain levels have been really high, which has meant I haven’t been able to do too much. Also, I have been having to rely on extra painkillers which can make me really sleepy and pretty useless.

It all came to a head, as such on Saturday. With adhesions, depending on what they are stuck to, it can lead to other problems. **WARNING THIS MAY GET A BIT GROSS**
When your bowels are effected this can cause major issues and if a full obstruction occurs, it can even be life threatening. This is why after a week of agony, and not being able to go to the toilet, I was understandably worried. For this reason I called 101, the NHS advice line. The woman went through some questions with me and then told me she would need to speak to one of the clinicians due to my answers. When she came back on the line she went on to explain that an ambulance had been dispatched to me and to sit tight until they arrived. Needless to say, I freaked! Panic and scared do not even come close to how I was feeling, whilst at the same time it was a relief someone was taking me seriously. Doctors don’t like to acknowledge adhesions after all.
The ambulance turned up about 10 minutes later and they came in and started taking my obs. I had low blood pressure (but that’s pretty normal for me), my blood sugar levels were fine but I was slightly tachycardic (heart beating slightly too fast). They put me on gas and air to help with the pain, and made a phone call to the Doctors explaining all this. Because I live on my own they thought it best that I went into hospital so I could be checked over properly, because the chance of obstruction was still a risk. This is where it all went downhill……….

Once I arrived at the hospital my obs were taken again and they were pretty much the same as before. I was then taken through to a corridor…..and left! For about an hour. With no pain relief! Apparently this was the queue for the Accident and emergency Department. I was in agony and hadn’t had any painkillers since the morning, so I assumed someone would at least be along to provide me with something, but this never happened. Finally though I was taken through to a cubicle…..and left again. This time for half an hour or so. Then a nurse came in, just to tell me that she was my nurse BUT that her shift was actually just finished and someone else would be taking over from me! When I’m in pain, I have a tendency to show it through anger. I was in immense pain, and getting angrier by the second!
Eventually a new nurse came in to take blood samples and to get me to do a urine sample. I was then told that the only pain relief I was to be given was paracetamol. Now for those of you who are lucky enough to not have to take painkillers, paracetamol is for mild pain relief ie headaches. Now daily I take Tramadol, which is a hell of a lot stronger, an opiod painkiller. So to be told this, nearly drove me through the roof. If that was the case I would have been better off staying at home and sticking with the stuff I had indoors!!
Because of this I finally snapped and told them this, that I would be better off at home, so would they take the cannula out of my arm and let me go. The nurse advised against this and said she would get the Dr to come and see me straight away. In all fairness he was pretty quick. The Harry Potter lookalike! Was pretty hard to take him seriously, as I swear his voice hadn’t even broken yet!! He examined me and said that my bowels sounded like they were moving, all my tests had come back clear so they were pretty sure there was no major obstruction. I was advised to ‘rest my bowel’ for the next few days and see what happens. This would mean cut down my fibre content as much as possible and eat things, that would be easily digested and that could move smoothly along my intestines and through my bowels. If it didn’t improve I would be best off seeing my GP and getting another hospital referral.

That all happened 3 days ago. I’m still in quite a lot of pain but the good news is that I finally managed to ‘go’ today!! Woo Hoo!!! When you have a chronic illness that has side effects like these, you tend to lose your dignity slightly and become able to talk about these things much easier. It also means that simple things, such as bowel movements become an important part of your life. Pretty sad huh!

So I’m just keeping my fingers crossed that now I have ‘movement’, the pain will start easing off. If not, could be the start of yet another referral journey……..

UPDATE – Let the music heal your soul

This week has been a pretty sh****y week to be honest. I woke up this morning, got to the sofa with a coffee and as soon as I finished my coffee, I felt completely done in, so made my way back to bed. Now I’m lying here, in pain. I’ve spent the last half an hour writhing on my bed and shouting to myself, because of the pain and the frustration!! No one mentions that part do they!! This is a regular thing for me actually, I end up moaning while fidgeting and trying to get comfortable at least. If anyone saw me, they would think I had completely lost the plot!! There is always one thing that I can rely on to distract me (to a point anyway) and that is music! So I now have my playlist on.

My music taste has always been varied. I grew up hearing Frank Sinatra and Dean Martin through to Dr Hook and Fleetwood Mac, Kate Bush to Black Sabbath. Most of my happiest memories involve music. So as I grew up it only seemed natural that I wanted to learn music too, so I started playing the flute when I was 9ish and carried on till I was around 16. It’s weird cause whenever I would play, all my concentration would go into that. Nothing else would exist for those minutes I would be playing a tune. As life goes though, it wasn’t cool to be a flute player (especially after American Pie came out!!) so I havent played properly in years now, but music has continued to always be a constant in my life. I have my happy songs, my sad songs, my positive songs and the songs I can just have a good old cry to! My music taste is even wider now, still including all of the above and more!

Today I’m on my positive playlist:
Christina Aguilera
Britney Spears
Frozen
Emile Sands
Christina Perri
Nickelback
Ellie Goulding
Kate Bush
These are just a few on the list

Music can bring out so many emotions in you, and I find, can even help to change your mood. So today, I’m feeling so angry and useless, therefore I am trying to play the most positive of songs to change my way of thinking.
If you listen to lyrics, they can seem so personal during certain times, and this is another reason I find it helps. Knowing that someone may actually understand exactly where you’re coming from!!

Now I know this isn’t so much ‘adhesion’ related but music is a tool I use so much during bad ‘ARD’ days and something I wanted to share with others.

So next time you’re feeling in pain, down in the dumps and really not seeing the point in anything, try making a ‘Positive Playlist’ and see what it does for your mood. If you’re feeling up to it, why not even have a bit of a boogie to it and see if music can really heal your soul……

We’re not born as Arnie!

Living with a chronic illness can be extremely debilitating. It can lead to certain activities being very limited. One of the things I am asked about the most when it comes to this, is exercise. How can people with adhesions still manage to work out, without causing more pain and damage to themselves?

Over the years I have been on many different medications, I’ve been too ill to be able to move and also to eat. As a result my weight fluctuated for quite a while. It seemed one min I had this little pot belly and fat cheeks, the next I was being asked if I had an eating disorder! The moment it really dawned on me though, was being asked when my baby was due! Any woman who isn’t pregnant knows that this is our worst nightmare!!!

So I went on the search on how to exercise safely. Luckily I have a few friends who are in the fitness/nutrition industry so I bombarded them all with 101 questions on anything and everything I could think of. What foods are good for weight loss? What exercises are good? And I took on board everything they said, and then tailor made my own program.

Now I am not going to say from then on it was easy peasy, because that would be the furthest thing from the truth! I started working out at the gym and doing yogalates at home but me being me completely overdid it, and found myself in more pain than ever and that put me out for even longer! So it was a case of trial and error. One thing I did find though was that by doing weight training, it put less stress on my pelvis and abdomen as I could focus on certain areas, hitting certain ones harder than others. A lot of people would assume that by doing weight training you would suddenly turn into some He-She Muscle Mary, but that is one of the biggest misconceptions in fitness. Yes, if you train in a certain way then I probably could do that, but that’s not what I wanted.

Diet was the next hurdle. There is no point doing any exercise if your diet is full of rubbish. You would be completely defying any exercise you do. Anyone with adhesions also knows full well that diet and certain foods can be a trigger for a flare up, so everything was again trial and error. It soon became apparent that there never is, and never will be a ‘quick fix’ to weight loss. You get exactly what you put in!

The problem is that people think that all exercise programs are aimed at everyone, again, this is not true! Any type of program should be individual and aimed at YOU. We are all different, we all have different limits BUT having a chronic illness shouldn’t be one of them. Yes it can make it harder but it doesn’t make it impossible. People have said to me that it must be easy for me as I am naturally slim……well I think the pictures show different. Ok, so I have never been extremely large, and yes sometimes the medication can help that BUT in the opposite the medication can make it 100 times worse! I was at my biggest whilst I was on hormone injections, Zoladex. I went up to a size 14, which may not seem big to some people but when you’re used to being a size 8-10, it trust me, it is! So I made a conscious effort to make sure that I didn’t get any bigger.

So if you do have adhesions, or any chronic illness in fact, that shouldn’t be a reason not to keep yourself healthy in all other aspects of your body. It’s just finding out what works, and doesn’t, for you.

Surely if I can do it, then so can everyone. Don’t worry about people around you. Know your limits and just keep going. Yeah, it may take longer than some people to get to where you’re happy. Yes, there maybe people around you lifting heavier and yup, you may get those funny looks in the gym but just remember this………EVERYONE HAS TO START SOMEWHERE! We weren’t all born to be Arnies, HE wasn’t even born that way, he just worked hard!

 

***PLEASE NOTE I AM NOT A PROFESSIONAL AND ALL OPINIONS IN THIS POST ARE FROM MY OWN EXPERIENCE. THEY ARE NOT MEANT IN A PROFESSIONAL MANNER. IF IN DOUBT, ALWAYS CHECK WITH A DR BEFORE COMMENCING ANY EXERCISE REGIME***

 

 

 

 

 

 

 

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……. 

Let the haters hate!

When you have any kind of illness, there is always going to be some haters, and with ARD this is no different.
People are unsure of the unknown. It’s human nature. Is this a reason to hate though?

I have suffered for around 8 years now and have come across that type of people who are ignorant to the unknown though, and are not interested in gaining knowledge. Instead they attack! When you’re ill, this is not what you need though.

Invisible illness will always be a topic for haters. If they can’t see it, it doesn’t exist in their minds. I ‘ve had so many people say to me, or behind my back, ‘she can’t be ill, she looks fine’. Just because the outside looks ok, doesn’t mean the insides are the same. I just wish I could show them all exactly what my insides look like and THEN see what they have to say!!
People are cruel though and living with a chronic illness, you have to develop quite a thick skin, or else it will slowly but surely grind you down.
Another typical example is being told I’m a benefit scrounger. If I look ok, then obviously I am, therefore I should be able to work right? Well yes I do claim benefits and I won’t be ashamed of it. Do people really think that we would choose to be ill over going to work? Anyone truly ill is most likely dying to go to work! To be able to do the ‘norm’. To have something to actually do, instead of be stuck indoors in pain! This is the difference between the real ill and the benefit scroungers. The ill WANT to work but can’t. The scroungers CAN work but don’t want too!

It’s one thing to have strangers commenting and making judgements but it’s a whole bigger issue when it comes from people who you think are friends, or even family members!
People I know have made comments to my mum, asking if i have an eating disorder because of how thin i am. My mum will then explain about ARD. That I don’t mind. It’s educating people!
But the worst case I have ever come across is by a ‘family member’ and I choose that term very very lightly, as that person will never be a part of my family in my eyes ever again……
But I have been accused of being on drugs, because of how skinny I am. Anyone who knows me, knows how anti-drugs I am! They also know that I would have a death wish if i was mixing drugs with my prescription medication. When you have any type of bowel obstruction, eating and food doesn’t rate high on your list because of how rubbish it makes you. Plus some of the medication keeps my weight down. Not to mention that when I can I go to the gym…………But no, it’s easier to accuse people of things than actually educating yourself on a persons illness.

EDUCATION! This is the only way forward!

Unfortunately though, there will always be ignorant and nasty people in the world, judging on things they have no clue about and it’s to those people I say SCREW YOU! I’ve struggled and fought and got this far, I’m not letting narrow-minded idiots get me down now.

As Romy and Michelle say
“I don’t care if you like us, ’cause we don’t like you! You’re a bad person with an ugly heart, and we don’t give a flying f**k what you think!!

It’s not all about us!

Suffering with adhesions or Adhesion Related Disorder (ARD) can be a big enough struggle on the patient but it’s not all about us!
The lives of everyone around a sufferer around can change too.
So I asked my mum to write something about how she sees it;

“I am mother of a daughter who has suffered from adhesions for the past eight years. Sarah Emily has always and will continue to have my total support. Over the years, I have gone to doctors appointments, hospital appointment and all her surgery. Every time, after an operation, you think, yes , this will work this time only to be disappointed.
I can’t even imagine the constant pain that she has to endure, daily, the painkillers she has to take which don’t always work and wonder, is this my daughter’s life for the rest of her life? Should someone be accountable for what has happened to her as she got an infection after having her appendix removed for no reason? Mr Guyer, her consultant, has always given Sarah the utmost care and unwavering support.
I have an amazing daughter for who life is tough for her but deals with this, stoically, daily. People judge her, your too skinny, other days her stomach is so swollen and she is in so much pain.
It’s an illness that no-one can see, on the outside, she looks okay.
I don’t think there is enough information to be had to understand A.R.D.
I will continue to be there for Sarah, through the good and the bad times because this is a debilitating illness and I feel that it’s all I can do.
But as a mother, all I want to do, is take it all away for her.”

When I read this, I won’t lie, but it made me cry. Why? Because I felt so guilty! Sometimes we forget that it doesn’t just affect us but also everyone that cares about us too. They are the ones that sit up with us night after night when the pain’s so bad, they are the ones who attend the doctors and hospital appointments with us. They hear the nasty comments that are made about us ‘faking it’. Although they may not have the physical pain, the mental and emotional strain on them is just as tough. Having to be the strong one whilst watching someone they love curled up in pain.

So this is dedicated to all those who have stuck by us, helped us out and been there through thick and thin! It’s those people that mean the most and help us get through each day. We couldn’t do it without you, so this is a big THANK YOU to you all out there!

You are our rocks!!

xxx

Not a morning person!!

Anyone who knows me, knows that I’m really not a morning person…..AT ALL!! But I bet they don’t know all the reasons why?? It’s not just because my bed is so comfy and I don’t wanna leave it (that’s just a lil bit of it 😉 )

In fact there are a few reasons why;

Medication: 
As with most medications, there are side effects, and one of them is drowsiness. I take Tramadol and Gababpentin daily which are both pretty strong painkillers. Most people would then assume that because of the Tramadol, I’m like a zombie but that’s not the one that causes my morning problems. Gabapentin is the culprit! If you have ever taken it, at night, you will know how hard it is to wake up the next day. It’s a job to open your eyes, let alone even get out of bed!!

It is mainly used in epilepsy, but was discovered to be good for neuropathic pain.  I find it does help slightly, though nothing will ever get rid of the pain completely. Tests were done on this medication regarding sleep, and it has shown that is does improve sleep efficiency  AND ‘decreased wake after sleep’ and ‘ decreased spontaneous arousal’.

So it has its good and bad sides. Does help you sleep when you’re in pain, but it’s a nightmare when it comes to waking up!

Pain:
I guess this is a given, considering its a chronic pain illness, but mornings are 100% the worst time of day for me!

I am only 29 years old, but to see me first thing, I look like an 89 year old lady! I walk hunched over cause it hurts to stand up straight until I have had my morning painkillers. As I mentioned earlier, my bed is oh so comfy, after I purchased a memory foam mattress, and a memory foam mattress topper (may seem slightly pointless to some, but don’t knock it till you’ve tried it). This still doesn’t help completely though, I still wake in the night with awful pelvic and abdominal pains. By the time I do get up, I’m guessing, the night’s painkillers have worn off so I can barely move.

So if you ever expect to see me do a ‘Sportacus Jump’  outta bed first thing, then you’re gonna be waiting a loooooooong time! (google LazyTown if you have no idea what I’m talking about lol)

Mood:

You’re probably thinking ‘Well doesn’t everyone have this problem’? Trust me it’s not just a case of not being in the mood to get up! Imagine waking up, in pain,knowing that you had no plans for the day and that even if you did, the pain was too much to even stick to those plans. That there are things you really want to do, but you know that your body won’t allow it. It’s a pretty depressing thought.

I’ll admit there are days i think ‘Is there any point’? and will turn over and just go back to sleep. Not the best thing to do, trust me, but it is hard. It can take so much motivation to get up!

 

So if you know someone with adhesions who isn’t a morning person, hopefully you’ll understand why now 😀