Meeting Prof. Qasim Aziz in London

Day: Saturday 13th May

Time and Itinerary:

5:30am – Wake up, get ready!
6:30am – Arrive at Shannon airport

6:35am – Check in
6:45am – Get Breakfast

7:00am – Board Plane with the help of Disability Services

7:15am – Flight Take Off

8:15am – Flight Land at Heathrow

8:45am – Get through security and make our way to the Heathrow Express Train

9:15am – Heathrow Express arrives at Paddington
10:30am – Hang around Paddington for a little while, get coffee

11:30am – Taxi to Consultants Appointment at The Physicians Clinic at Devonshire Street
12:15am – In appointment place, fill out forms and go into meet Prof. Qasim Aziz

Prof. Aziz was very welcoming, I found him to be thorough, interested, very educated and deeply experienced with EDS and it’s comorbidities.

I had everything written out over two A4 pages, Which he said he was delighted with and wished more people would come prepared! It had My Diagnosis, Investigations done to date, Medications, All my doctors listed, Current Symptoms etc. So he went through everything with me.

To make a long story short I was there over an hour, he didn’t rush us at all and listened to everything both my husband and I had to say about all the symptoms, pain and weightloss I have been going through with my Gastrointestinal problems.

He did a few basic tests with me while I was there and then sat me down to explain what he believes is going on with me.

He reckons I am high in ‘Histamines‘, meaning that I am all inflamed and raw throughout my body as a result it all contributes to my various symptoms even outside of gastro problems. He said that a ‘Low Histamine Diet‘, would be of huge benefit to my lifestyle for 6 months and then I can introduce other foods back into my diet.

He added things like, taking probiotics 2 to 4 times daily with the diet as well as the supplements that I may be lacking in like, Vit.C, Vit B Complex, Omega 3 and Chelated Magnesium.

He went through all my medications and changed them about as well as adding some to help my tummy. Apparently a few of the meds I am on to help my gut are in fact paralyzing it, so I have to cut back on those and my opiates as they are slowing my gut function down.

As the LowHistamine Diet is sugar free, he has also changed the Fortisip Compact calorie drinks I have been taking as he said they are full of sugar, so he changed them to E028 Cartons instead.

He mentioned that he has had people like me come into him in wheelchairs and after this diet and the other extensive recommendations he gave, they are now walking, relatively cured and back to work, living a normal life once again as the symptoms are now controlled.

He also said that everyone is different and what may work for one person may not necessarily work for me but it is certainly worth a try for 6 months at the very least.

I still have a lot of research to do to get my head around this new diet but he wrote out loads of recommendations so I know what to look for, I found him to be very helpful.

I have already received his full report, he had it emailled to me within 2 days, by the Monday after the appointment on Saturday, I thought that was very smooth and professional.

14:00pm: Finish appointment and get Taxi to the Hotel.
14:35pm: Check in and unpack and relax for a few hours to recover from the morning.
14:55pm: Pass out for around 2 hours
17:00pm: Wake up and go get some food
17:15pm: Make our way to the food plaza across from our hotel and find a sushi place

17:30pm: Too tired to deal with crowds so decide to bring sushi back to the hotel to enjoy in peace. Then just relax watching TV for the rest of the evening as we were both wrecked and I was beginning to feel really poorly after the busy day. I did ok though but we didn’t get much sleep as there was a Hen party in the room next door to us so it was really noisy at times but either way we got through the night and were up bright and early the next morning, Though we were both impossibly tired and I was barely able to move!

We get up, shower and get ready, check out of the hotel and get a Taxi to Paddington again to get the HeathrowExpress train into Heathrow Terminal 2 to catch the plane.
We grab breakfast and all goes as normal through security and onto the flight.

I always laugh at the sheer difference between the security in Heathrow compared to Shannon, Shannon are so lazy about everything and you literally walk straight through without little hassle but in Heathrow they want to examine every inch of you and your bag, which is great that they are so thorough but the difference in the two always makes me giggle.

Either way we got home safe, landed, went to collect our dog from my parents house and hit for home where we both crashed and burned pretty hard! I know right, just one day and were done, useless we are! I felt incredibly sick and my husband caught a flu on our travels so he has been hit pretty hard too since coming back. We both still haven’t recovered properly!

Next up now is to make sure my doctors and consultants here get a copy of the report he has sent me and to start a food plan to get this diet started once and for all. I am still following the Low Fodmap diet until I have everything I need to start this new Low Histamine diet.

I am looking forward to the adventure over the next 6 months or so with this new lifestyle change, and of course I will share it with all of you as I go along!

Thank you once again to everyone who made this trip possible, John Steele and Mick Dolan for organising the Bowie Gig in February which raised €2000 each for both Zondra Meaney and myself and also to everyone who contributed through my Go Fund Me Page. I am deeply appreciative to all  of you for your help and support, thank you.

Lette (Fainting Goat!) xxx

Advertisements

London Update Soon!

Just back from London after meeting with Prof. Qasim Aziz Neurogastroenterologist who specialises in EDS. It went super well and I am delighted with what he had to say to me but I am feeling so very ill after traveling (I know it was only one night but I’m not able!) I will get to the full update shortly.
Just wanted to let you know it’s on it’s way I just need a little rest for a few days, Ill get to it! 🙂

Cheers Folks,

Lette (Fainting Goat!)

Saturday Submissions – With Corina Duyn

My name is Corina Duyn and I am an artist and writer who lives with the chronic illness M.E. (and fibromyalgia, and a host of other issues – all resulting from M.E.

Anyway, throughout the now 18 years I have found a few ways to help me live a good life. Silence. Nature. A positive outlook and creativity.

I pretty much look at how my day is right now and not fret too much about what might happen tomorrow. Good or bad.

Initially I thought that I had become ill because of my creative life. Working too hard, so I tried my best never to be creative again. But a friend pointed out a few years in, that I was making drawings about not wanting to be creative. Case closed as the saying goes.

I embraced my creativity from that point onwards and it has given me a huge amount of knowledge and understanding of how I can deal with the challenges ME had bestowed on me. How to deal with pain, with exhaustion, with an at times non-working-brain. I learned that I could be Free on paper. I could fly by using clay. I could explore unknown worlds through writing.

birth-dance.jpg

Birth Dance, sculpture by Corina Duyn 2016

And the bonus is that it enabled me to connect with the world beyond my walls. A huge world of people who are interested in my words, in my creations. It enabled me to publish books, have exhibitions, but most of all to share the little bit of nuggets of healing I have found along the way.

Sharing my life’s experiences is the most wonderful side effect from living with chronic illness.

brave-into

page from my Into the Light book .

It is a peculiar world.

From the 1st January I am writing a daily blog. With anything and everything that plays around in my head. From life in my garden, dealing with intense pain, to creative adventures, to inspiration I take from others. A mixed bag. Just like real life.

My blog is http://corinaduyn.blogspot.ie (you can sign up for notifications) or follow me on Facebook https://www.facebook.com/CorinaDuyn/ , where I link these posts.

My website http://www.corinaduyn.com/ has a host of galleries of my artwork, in which you can see the different stages I went through from illness to wellness. (Not recovery- but wellness). Also some videos and documentaries which were made along the way.

Thanks for your company here!

Corina Duyn

_________________________________________

Thanks so much to Corina for sharing her blog and work with us, Isnt her sculpture and artwork beautiful? Be sure to hit up Corina’s Links and make a connection and if you want to take part in Saturday Submissions just see below, I am always looking for guest bloggers and I will link your blog or preferred social media link in the permanent blogroll if you are featured.

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

#REDS4VEDS Vascular EDS Awareness

 

It’s that time of year again where we all try to raise awareness of Vascular EDS, the scariest of all the EDS’s. It is in conjunction with Annabell’s Challenge and originally organised by @TheZebraMom and EDS Awareness Ireland. This campaign has gone global now (Well done to the creators!) so lets keep it going!

1: Wear Red
2: Snap a Creative Selfie
3: Be sure to use #REDS4VEDS
4: Share on all your social media accounts
5: Tag or Share with 3 others so that they will do it too and we can carry on the love!

Thanks Folks

Happy #REDS4VEDS Day! 🙂

May Is EDS Awareness Month – 2017

f40ec78d230d1d2c18e460a4e7b96ece

Yes, it’s that time of year once again folks, May is EDS Awareness Month and this year, I update my diagnosis story as it just grows in volume and substance every year since all this started in 2011!! So here I go again, it’s 2017 and my story is in need of a clean up and update, so let’s jump right into it!

So firstly, What is EDS?

Put simply, EDS (Ehlers Danlos Syndrome or ‘The Ehlers Danlos Syndromes’, as it is now known since March 2017) is a group of connective tissue disorders. Here is a better explanation according to the EDS Wiki:

” Ehlers–Danlos syndrome (EDS) is a group of genetic connective tissue disorders. Symptoms may include loose joints, stretchy skin, and abnormal scar formation.[1] These are typically noticed at birth or in early childhood.[2] Complications may include aortic dissection, joint dislocations, scoliosis, chronic pain, or early osteoarthritis.[3][1]

EDS is due to a mutation in one of more than a dozen different genes. The specific gene affected determines the type of EDS. Some cases result from a new mutation occurring during early development while others are inherited in an autosomal dominant or recessive manner. This results in defects in the structure or processing of collagen.[1] The diagnosis may be confirmed with genetic testing or a skin biopsy. People may be misdiagnosed with hypochondriasis, depression, or chronic fatigue syndrome.[3]

There is no known cure.[4] Treatment is supportive in nature.[3]Physical therapy and bracing may help strengthen muscles and support joints.[3] While some types have a normal life expectancy, those that affect blood vessels generally have a shorter life expectancy.[4]

EDS affects about 1 in 5,000 people globally.[1] The prognosis depends on the specific type.[3] Excess mobility was first described byHippocrates in 400 BC.[5] The syndrome is named after two physicians, Edvard Ehlers from Denmark and Henri-Alexandre Danlos fromFrance, who described it at the turn of the 20th century.[6]” –

Ehlers Danlos Syndrome Wiki

If you would like to know more about EDS types, symptoms and a host of further information then I highly recommend The Ehlers Danlos Society Website for more info.

1655924_284533608363564_239963170_n

My Personal Diagnosis Story.

Though I have had many medical issues throughout my life, my Chronic Illness journey only began properly in 2011.

One Tuesday morning in March, I woke to not feeling very well and as I was exiting the bathroom I called out to my husband who just happened to come and catch me as I passed out in his arms.

I continued to come to and then pass out again every time I straightened my legs. My Heart rate was racing and my Blood Pressure was dropping really low. My husband called the doctor for advice who told him to immediately call an ambulance or take me to A&E. He decided to drive rather than waste more time waiting for an ambulance which would take at least 30 minutes to get to where we lived.

On the way to A&E my husband had to keep shouting at me in the car to try and keep me alert as I kept needing to pass out. We finally arrived at the hospital, I was rushed inside and long story short, many tests and doctors later I was kept in for nearly a month where many further tests were performed, one of which was a Tilt Table Test with which I was diagnosed with Postural Orthostatic Tachycardia Syndrome (Pots) and Vasovagal Syncope (VVS) or Neurocardiogenic Syncope (NCS) – they are both the same thing, basically neurological fainting!

 

So where does EDS come into it?

In the 2 years following the diagnosis of Pots, I was hospitalized many times because of the fainting, low blood pressure and other complications. In the process of trying to figure out what caused the Pots, Hypermobility was mentioned a few times by a couple of doctors and physios, however, whenever I mentioned it to my Pots doctor (he is a geriatrician but he is the specialist who looks after me for my Pots), he didn’t seem to think it was anything to be worried about, even though I did have chronic pain and I did feel it was affecting me at the time.

As time went on, the pain became worse and I felt a formal diagnosis of Hypermobility would benefit me, though there are no EDS or Hypermobility specialists anywhere in Ireland, I still felt a diagnosis would help me.

I had heard about a Rheumatologist in Cork who knew about EDS and Hypermobility so I decided to pay him a visit just to see what he thought. Down I went to see him and within a few minutes of him seeing me he had me diagnosed with a ‘classic case of Hypermobility EDS’, with possible Classical EDS overlaps. I was surprised and kinda happy that I had finally confirmed my inkling that I had it.

However, this diagnosis from the Cork Rheumatologist wouldn’t be worth the paper it was written on… with my pots doctor anyway. He never accepted the diagnosis and just ignored it outright so I just had to live with the fact that my Pots was probably caused by the EDS but there was nothing I could do about it.

To help, my Pots doctor did organize for me to see a Rheumatologist in Croom hospital who confirmed my possible hypermobility and organized for me to do Hydrotherapy and physio at their facilities in Croom Hospital. Even that physiotherapist confirmed I had possible hypermobility but she never believed I had EDS. I found the HSE as a whole were fine to say hypermobility but would never confirm EDS (for fear they would have to treat me for it if they confirmed the diagnosis! I have always been paranoid that was the reason anyway… maybe not!)

You Said You Always Had Some Medical Issues?

Yup! I was even breached for a while before birth but thankfully righted myself before being popped out! When I was born then, I was born with a Fissure and a broken Tail Bone and throughout my life I always had gut issues, travel sickness and dysmotility and I was never without a cast, sling, crutch or some other bandage or plaster thanks to stupid injuries and broken bones which, even though broken bones are not symptoms of EDS I put a lot of my past injuries and ailments down to my EDS as you’re born with it, it’s with you from the start and I seemed to have a lot of various symptoms.

img_0429-1

I am currently severely deaf and wear Bi Lateral Hearing Aids, I have and have had since the age of 7, Bi Lateral Sensory Neural hearing loss and Otitis Media with under developed eustachian tubes and auditory canals. My younger life was plagued by ear infections and severe ear pain.

When I hit puberty and teenage years the fainting, feeling really weak, Nausea, Dysmotility and chronic pain got bad with a vengeance and again all the way through school there are photos of me in slings and on crutches, it was crazy! I did do Karate though from the age of 13 and I was constantly breaking bones from it! Baaaaad idea with EDS but sure I never knew and the A&E at the time only ever treated the individual injuries and never looked at everything as a whole!

My teeth and gums gave me problems too. From the age of 13 to 16, I was with an Orthodontist and had braces for the full 3 years. As well as always having gum disease for as long as I can remember, They could never successfully freeze my gums, they had to do lots of injections and finally had to bring in a heavy chrome looking contraption thing to freeze the gums, either way lots of freezing needed. I also had receding gum and bone and every time the braces were removed my teeth would start quickly moving back to where they had been! I now know all these teeth things are problems of EDS.

Things Improved and I Returned To Work

After a little while things slowly began to improve, life from 2011 had been turbulent but in 2013 I decided the time was right for me to return to work. I had been working as self employed while I was running my Media Production Company from 2010 after I had finished my Masters of Science in College and it went very well while I had the energy for it and obviously while I was sick I became unable to deal with 12 hour days traveling all over the country for day long photo and video shoots so I decided something slower paced would suit me better and I found the perfect job working from home for Apple Computers. I absolutely loved the job and because it was from home it was sedate enough for me to deal with some symptoms and still be able to work but just as things had started to go well, about 4 months in I tripped over my Mums dog we were minding and wrecked my hip. Symptoms seemed to crack up from here!

Things Then Got Worse and I Went Into A Wheelchair and Had To Stop Work

Things got worse and worse from here, my hip pain was daily and excruciating, I had to go into hospital for investigations where I was advised to stop work because of my illness and to start using a wheelchair to help my mobility. Of Course, I didn’t want this at all and resisted it at all costs but had to give in, in the end as I simply just needed it and now I am glad I have decided to use a chair as it has given me much freedom in this restricted state.  Work however has stopped and has not restarted since stopping in 2013. It doesn’t look likely that I will ever go back to work as this is a progressive disease.

16524_b

The symptoms continued to get worse and worse, I started having seizures, ended up in the ICU at one stage for a couple of days and I decided that going to a specialist in the UK was the right thing to do. I was hospitalized so many times where the doctors didn’t know what to do with me and didn’t accept my EDS diagnosis from the Rheumatologist in Cork and I was left with very little help or treatment.

IMG_1523

Even my hydrotherapy and physio had stopped early in 2014 as I had fainted in the pool because of my Pots in the hot water and the physiotherapist didn’t want to see me back at the pool or gym until such time as I stop fainting… which is never! So unfortunately I havent been able to get back to that either since it stopped!

Prof. Rodney Grahame, EDS Extraordinaire in London, was the next port of call.

The Hospital of St. Johns and St. Elizabeth in London

s-l300

I started a Go Fund Me and started fundraising to go to London. So many people generously helped out, Thank you to all, everyone was amazing, even a quiz night was organized and everything, I was blown away! I finally had enough to go and so I did, You can read all about the trip HERE.

IMG_1758

Long story short, we got to London and I got a confirmed clinical diagnosis of EDS Hypermobility Type with secondary GI Issues and possible Classical EDS overlaps, from the Professor himself. He did up a great long letter and treatment plan to send to my doctors that couldn’t be ignored and I have found has helped me hugely since getting it. He referred me to Harold’s Cross which I did in Feb 2016 and you can read all about that time HERE and I find all doctors and nurses take the diagnosis far more seriously than the one from Cork. I have had no more trouble from anyone on believing or disbelieving the diagnosis. He wanted me to return to see Prof. Aziz a Neurogastroenterologist for further tests and treatment and I had hoped to return sooner than I am able to. I will be returning in 10days time (2.5years later) to see him and I am excited!

Why Didn’t You Return To London Before Now?

Simply put, I was too ill to fly. The past 2.5 years have been by far the worst in terms of my symptoms. My Nausea is daily and intractable, my dysmotility causing so much pain and trouble that I have been hospitalized loads of times because of it and what I have been diagnosed with called Sphincter of Oddi dysfunction has been causing severe pain and again I have been hospitalized because of this and other chronic pain. I have also been diagnosed with Neurogenic Bladder Dysfunction and have had complications because of that also.

12119196_10204695707743786_735339326102747030_n

My Neck has been giving me huge trouble. I am receiving Occipital and SI Joint Nerve Blocks for severe pain. My pain specialist thinks I have instability in my neck but that cant really be checked without an upright MRI, which I may also need to get, but again there is none in Ireland so this will have to be done in London if it is needed. At the moment he is treating me as though I have instability in my neck with the Nerve blocks and opiate pain meds until such time as I can get it checked properly. He has me in for a lie down regular MRI for which I am waiting to be called but he doubts it will show anything.

12552733_10205055767745061_6682798959552846822_n

My Gastro issues are probably my worst problem. They are what I am hospitalized for the most and they never seem to go away. This is why I decided to visit another specialist in Cork, this time a Gastroenterologist who has studied with Prof. Aziz (the Dr. I am seeing in London for my EDS Gut related issues) I went to see him in Cork and he immediately identified all my problems and symptoms, took note of all the medications I am on and booked me in for a number of tests that may be asked for in London anyway.
In Feb this year I had a Barium Swallow test that showed up all clear which is great. Next Monday I have a Gastric Emptying test to do which is happening just before I go to London to see Prof Aziz. I will be flying out the morning of Sat May 13th. The reason I decided to go to this doctor in Cork was that he understood EDS, I heard great things back about him and the fact that he studied under Prof Aziz all meant that he could possibly help me out and so far I feel he has. He was the one who wrote the referral letter to Prof. Aziz for me and he said he would work with whatever Prof. Aziz says in his treatment plan.

IMG_4113

So, When Are You Off?

All going well with my health (it has been very up and down lately, mostly down) we hope to fly out Sat Morning the 13th May at about 07:30am and landing in London around 09:05am. From here we may grab a bite to eat before heading to the appointment with Prof. Aziz at 12:30pm at The Princess Grace Hospital, where afterward we return to the hotel to rest.

IMG_1702

That’s the plan anyway, lets hope that’s how it works out! I tried a dry run of trying to stay up for 11 hours (sounds easy for some but for me I find it difficult to stay up past 4 hours before needing rest) as 11 hours is the time it takes from being up from about 05:00am that morning until about 4pm which is roughly the time we will make it to the hotel at, thats 11 hours up. I tried that the other day and actually failed at 9 hours and needed to crash so bad! so I am worried I may not be able for this trip but I will persevere and hope for the best. My husband will be with me so at least I wont be alone when I go to London and of course I will update you all when I return. I really hope the good professor can help! 🙂

Lette (Fainting Goat!) xxx

Saturday Submissions – With Denis Murphy – Parkinson’s Disease and Self Expression

Parkinson’s Disease and Self Expression.

Hi, my name is Denis Murphy and I’m from Cork city. I am currently living in a little village in county Sligo.
A major turning point in my life came in 2007 when, at the age of 48,
I was diagnosed with early stages of Parkinson’s Disease.

I would like to share some of my thoughts, feelings and emotions with you as I believe by sharing, we can better understand what we are going through,
which often seems like a lonely struggle.
It can also bring a better understanding to our family, friends and loved ones.

We can get caught up in our own worries and forget that our disease or condition not
only affects our own lives but those around us and they often feel as frustrated and
confused as we do.
I am very lucky to have such an understanding wife.
She has had M.S for over thirty years so she has great patience,
empathy and understanding through her own experiences.

As anyone who suffers from Parkinson’s Disease,or has a family member who does,
will know and understand that it brings about drastic changes, both physically and mentally.
It can be very difficult for people with Parkinson’s to
express their emotions, feelings and
to cope with their loss of power and independence.

One of the many physical conditions is called “The MASK “.
This is when the face muscles become stiff and rigid and expressionless.
The eyes appear to lose their sparkle and the mouth seems to be
permanently in a “sad” position. To the outside world this appears as if the person with Parkinson’s Disease
( or PWPD for short) is uninterested, bored and
apathetic. But behind this stern facade lies a sea of feelings and emotions.

Another symptom of Parkinson’s is a problem with vocal expression.
The voice becomes weak and we lose our strength and with
this we begin to lose confidence in ourselves.
We find it more difficult to express our opinions
and ideas in public as we struggle to be heard.
So between difficulties with facial and vocal expression
we can withdraw into ourselves and stifle our emotions.
All the more need for an outlet to express these
emotions, feelings and fears.

So many PWPD find this through art, be it painting or crafts or writing.
While Parkinson’s Disease severely restricts our physical and mental activities,
there is one advantage.
Whether it is the disease itself or the side effects of the medication
but it seems to stimulate the creative areas of the mind.
So it is only in the last two years I have begun
to compose and express my feelings through my poetry.

The main themes of my poems are about coping with Parkinson’s Disease
or any disability and the fears and hopes and also about our
relationship with Nature and with ourselves.

So enough about me, I hope that you will enjoy the
rantings and ravings of a mad Corkman and that my words may
stimulate your mind and make you think about life,
changes, and above all, appreciate this wonderful
gift we have been given.

–  c/ Denis Murphy 23 April 2017. 

_______________________________________________

 Background information on the poem – A Parky in the Pub

This is the first poem I ever wrote about Parkinson’s. So it was an important step for me
in revealing my personal feelings and exposing my emotions publicly.
I used humour to write about a serious subject.
I do not like the term “Parky” but in this case it’s just a play on the word party.

______________________________________________

A Parky in the Pub

I’ll head down to the pub for a drink and the craíc
Sure I’ll be dead long enough on the flat of my back
So I make my way down to my local bar
On the other side of town for a chat and a jar
Some sit alone, some sit together
Talk of the match or of the weather
And after a pint or two
I need to visit the loo
So I shuffle and stagger around tables and chairs
Aware of the glances, the pity and stares
Through the noise and the clatter
The gossip and the chatter
I make my way back to my friends and my table
Slow progress but thank God I’m still able
The lads at the bar exchange advice and opinions
To the world’s problems and all their solutions
While the girls at the table share secrets and giggle
And walk pass the lads with a sway and a wiggle
The winking and nudging, the secret half glances
Some of the lads even fancy their chances
The smutty jokes and clinking glasses
The lad’s loud laughter like braying asses
As they drown out the music like crows in the nest
It’s time to go home for some peace and some rest
So I say my goodbyes in words and mumbles
And make my way home in staggers and stumbles.
The journey home seems twice as long
But I’m on the right road not gone wrong
Two steps forward one step to the side
Steady as she goes watch that stride
Left foot right foot no downward glance
Sure I might yet get to star in River Dance
– c Denis Murphy Aug 2015

______________________________________________________

Thanks so much to Denis for todays Saturday Submissions post. Be sure to check out Denis’ own blog and make a connection. I love the poem and the play on words here to show the symptoms of Parkinson’s akin to those of being drunk. How do you feel about his poetry, does it resonate with you? Be sure to leave some feedback for Denis and share the love! 🙂

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Doing a dry run test for London!

So yesterday and today I have been doing a dry run for London, meaning I have to try and stay up for at least 11 hours straight, without bad symptoms kicking in, to be able for my flights and trip to London on May 13th. Sounds easy right?… yeah! I am having trouble and I still have 3 hours to go today!! I usually last about 4 to 5 hours up before bad symptoms and desperate fatigue get in the way and I need to rest in bed again so I need to be able to do this to go on the trip.

The itinerary starts for the trip on May the 13th at getting up at 5am to check in on time and fly out for the 7:30am flight to London, then I have to make it to London and to the specialists appointment at 12:30pm and wont be at the hotel until at least 4pm, so that is 11 hours from getting up at 5am! Then and only then will I be able to rest for the first time on the trip. To anybody else this would be simple but not for me.

I got up at 9 yesterday and made it to 8pm last night, then watched The Expanse and then passed out cold in bed for a couple of hours, I really needed the sleep and symptoms had kicked in pretty bad throughout the day. I simply do not have the stamina and health like I did the first time I went to London so I decided to do another dry run of it today. I got out of bed at 10am this morning and I have to make it to 9pm tonight and I have to say I am finding it tough!

I have the tickets bought for the trip and I really don’t want to have to change or cancel them so I have to be safely able to do this without bad sickness and symptoms getting in the way.

If I do this successfully, Ill let you know, but, I am finding it hard and may have to change the itinerary around a little to be better able to compensate my physical needs, but hopefully that wont need to happen.

Here’s to the next 3 hours, let’s do this!!! (I hope!!)

Lette xxx – (Fainting Goat!)