A New Level of Fatigue? Get Your Bloods Checked!

 

Image From Google Image Search: IndiaMart

Those of us used to living with Pots and EDS will know that fatigue (sometimes extreme) comes as part and parcel of these conditions. However in the last year and a half to 2 years I had developed a new level of fatigue that had just crippled me! I pretty much needed to sleep most of the day. I got up, had a shower, eat breakfast and by the time 4 hours had passed, my body was crying out for bed again. Every 4 hours or so I would need to sleep at least 2 hours and this continued throughout the day until I went to bed at night, it got so bad that my husband was beginning to miss me as I was always in bed!

I had my meds reviewed, I was on a new diet which had helped my gut related symptoms hugely but nothing I tried would help my fatigue.

I decided to get my bloods checked in July this year and promptly found out that I had anemia. My vitamin B12, Folate and Vitamin D3 were all very low and contributing to my major fatigue and related symptoms.

My doctor put me on a regime of B12 injections, once a week for 5 weeks then once every 3 months there after to maintain my levels. She put me on D3 liquid supplements and also on Folate tablets once a day for the next 6 months or so.

After my 5th injection which is due the next time I go in, they will do more bloods to see how my levels are doing and we can maintain accordingly after that.

What are the symptoms of Vitamin B12 Deficiency?

“Vitamin B12 is needed by all cells of the body in order to allow them to multiply. A shortage of vitamin B12 mainly affects red blood cells, because millions need be made every minute. A lack of red blood cells can lead to anaemia. The common symptoms of anaemia are tiredness, shortness of breath and palpitations.

There is also a type of B12 deficiency anaemia caused by lack of intrinsic factor. This is called pernicious anaemia. A shortage of intrinsic factor means that B12 cannot be absorbed properly. Pernicious anaemia has the same symptoms as anaemia, including tiredness, shortness of breath and fatigue. Other symptoms of anaemia can include:

• soreness of the tongue,
• loss of weight,
• pale skin, often with a lemon tint,
• intermittent diarrhoea,
• menstrual problems, and
• poor resistance to infections.

If the deficiency goes on too long, the nervous system is liable to be affected, causing:

• tingling of the fingers and toes,
• muscle weakness,
• staggering,
• tenderness in the calves, and
• confusion.”
• – HSE.ie/b12deficiency

 

What are the causes of Vitamin B12 Deficiency?

” The immune system normally makes antibodies to attack bacteria and viruses. Pernicious anaemia is caused by an autoimmune disease, which causes the immune system to make antibodies against other parts of your body. In pernicious anaemia, antibodies are formed that attack the stomach lining and damage the cells that produce intrinsic factor. This stops intrinsic factor from attaching to B12, and so the vitamin cannot be absorbed into your body.

Another cause is where the bowel cannot absorb the vitamin B12 because it has been damaged by disease (e.g. Crohn’s disease) or shortened by surgery (usually to treat bowel disease). If the bowel has been shortened by surgery, these problems can contribute to a condition known as short bowel syndrome. Short bowel syndrome is a group of problems affecting people who have had half or more of their small intestine removed. Common symptoms are diarrhoea, cramping and heartburn. Some people become malnourished because their remaining small intestine is unable to absorb enough water, vitamins, and other nutrients from food.

Occasionally, some people who follow a vegan diet may become deficient in B12. This is because B12 is not found in vegetable foods (such as fruit, vegetables and grains). ” – HSE.ie/b12causes

 

So have the injections and supplements helped so far?

I definitely found the vitamin B12 injections and the D3 especially were really good initially as they would give me an initial burst of energy for a day or two but recently I haven’t found them as great, but, I am sleeping less now which is great, however, I still need a lot of sleep throughout the day.

Now I get up in the morning and can stay up until evening time around 6 or 7 pm where I have to go to sleep for about 2 hours or I simply wont feel refreshed enough to get up before 2 hours. Then I get up at around 8 pm and can stay up until we go to bed for the night. Sometimes I may need another nap in the evening but usually I just go to bed for a nap now just once in the evening which is a huge improvement and has given me more of a life back.

So, no it’s not a cure by any means, but I believe if I didn’t get my bloods checked at the time that I did, I would still be sleeping my brains out all day so my simple advice to you is, if symptoms change and you notice a new level of fatigue that you haven’t experienced before then there surely is something causing that, don’t just automatically put it down to your EDS or Pots or regular diagnosis, if it’s new get it checked out and I would recommend getting your bloods checked. At least they are something that can be fixed and managed and may play a huge role in your level of fatigue.

Just be aware, explain to your doctor what is happening with you and ask for bloods to cover anything that may impact fatigue as I was told that Vitamin B12 and D3 bloods need to be checked for separately to regular bloods. So just for you to be aware of that 🙂

Best of luck,
Lette 🙂 (Fainting Goat)

 

Blog Awards Ireland 2017

Hi all,
Hope you are all as well as can be, sorry about the little hiatus, I was in hospital and im only just out but more on that in another post, right now I am back for a bit of begging!!

It’s that time of year again where nominations for the best blogs in Ireland go forward for the Blog Awards Ireland and I have just entered this humble little bloggie in for the running.

If you have just a moment to nominate, and thats all it will take, please nominate the blog by scrolling down and popping in the blogs url at the following link

If the blog makes it to the Long List I will be back looking for further support from you so I just want to say a massive thank you to all who take the time to support this blog, THANK YOU!

Will be back soon with another medical update from while I was in hospital and more on my current new diet 🙂 Thanks all 🙂

Saturday Submissions – With MeggioMum

Todays Saturday Submissions is brought to you by MeggioMum A.K.A Heather, who lives with Pots and EDS, be sure to check out her wonderful blog about ‘Two cents from a Midwest Mom’, HERE.

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Potsy Mamas: What We’re Hiding

No, I’m not talking about marijuana, though that would definitely be an interesting article. I’m actually talking about coping with chronic illness while raising a family. Perhaps you’ve heard of Disautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), or Ehlers-Danlos Syndrome. Perhaps you haven’t. But these conditions are very real, and being a mom of four (soon to be five) while living with them is a surreal experience full of both suffering and beauty.

Imagine for a moment that, like every mother on the planet, you have more things to do in a day than are physically possible to accomplish. Now imagine trying to tackle that when your body feels heavy like you’re wading through thick mud, and coffee only makes the feeling worse. You’re exhausted like you’ve just run a marathon… ALL THE TIME. Walking up the stairs is like mountain climbing without oxygen. You have to constantly write yourself notes and set alarms on your phone because your memory is swiss cheese. Complex situations are overwhelming because your brain is in a fog, like when you first wake up in the morning, except it never goes away. The mere act of standing makes your heart jump in your throat, and the smallest movements can dislocate a rib or hyperextend a knee. And you are in significant pain every waking moment.

What happens when you live like this every day is both heartbreaking and inspiring. A series of things start to unfold. The first thing to go is your house. Dishes and laundry pile up, as does random clutter everywhere. You forget to clean the cat box and don’t have the energy to mow the lawn. Your house starts to look like an episode of Hoarders and you’re too ashamed to invite people over or even let your kid’s friends inside to play.

Then goes your self esteem. You blame yourself for all the things you know you should be doing. You feel lazy and worthless. Thoughts creep into your mind like “I’m not trying hard enough”  “I’m such a burden” and “My family must be so disappointed in me.” You curse your body for not working right, and feel resentment towards both yourself and towards healthy people who live more mainstream lives. Your marriage suffers, both physically and emotionally, and you start to tell yourself that your spouse would be happier without you.

The guilt and self-blame are the worst when it comes to your children. You want to give them the world, and instead they don’t even bother to ask if you’ll take them to the park because they know that pained look in your eye all too well. You teach your children to be self-sufficient and independent; more out of necessity than anything else. You are proud that your teens can cook dinner, wash their own clothes, and fix their own bikes. You love how your younger kids can quietly entertain themselves outside in the fresh air without you hovering over them. But you also know that their childhood is flying by at lightning speed while you’re laying in bed trying not to throw up.

Then comes the judgement squad. Doctors not familiar with your condition, random people on the street, your kid’s teachers, coworkers, sometimes even your own family members. Everyone has an opinion on how severe your illness is and how you should be handling it. A lot of people don’t even believe your condition is real because you look “normal” on the outside. Your slurred speech and shaky movements means you sometimes get mistaken for an alcoholic or drug addict, and then treated with open disdain and discrimination.

Some people will be sympathetic, but insist you’ll be cured if you would just take more ginseng, or stop eating gluten, or do more yoga. My personal favorite is when they tell you to think positive and visualize yourself healthy.

I am a strong believer in homeopathy, clean eating, healthy exercise, and so on. But none of these things are magic cures that will stabilize the blood flow to my brain and keep my joints from dislocating. None of these things will keep my autonomic nervous system from misfiring like an electrical short. This is what leads to the final stage: the mask.

You start hiding your condition as best you can from the world. You grit your teeth and smile through the dislocations and spasms. When someone asks what’s wrong, you tell them you’re “just a little tired” instead of telling the truth. People get tired of hearing about your symptoms and start to tune you out. You avoid social interaction as much as possible, and start lying to cover up for it. (“Oh I’m sorry I missed the meeting, I had a flat tire”). You completely shut down in stressful situations because everyday life is already stressful enough, and you just can’t bear any more. You decide it is so much easier to put on the normal facade than wasting energy trying to make everyone understand. (Because 80% of them never will.)

I am trapped inside this body like a butterfly in a cocoon, except I don’t get to break free and fly.

There is an odd beauty to it though. This purgatory of inbetween health- not sick enough to be disabled, but not healthy enough to be normal- is like slowing down and living your life in stop motion. You learn to appreciate tiny moments like the sun warming your skin, the crinkle of smile in your daughter’s eyes, the earthy flavor of a hot cup of tea. You appreciate the people who stick by your side, and love them fiercely for it. You learn to let go of the things that don’t matter; like messy hair,  dirty kids, and judgemental people. You learn to slow down and just breathe.

We are moms (and dads) worth knowing.

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Thanks so much to Heather for submitting this post today, does this relate to you? How do you find juggling parenting and family life with chronic illness? If you relate, please leave a comment or consider following the directions below and submitting your own post to share!

——— 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

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, 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.

page from my Into the Light book .

It is a peculiar world.

From the 1^st 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

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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

May Is EDS Awareness Month – 2017

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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!)

Saturday Submissions – With Ciara Chapman

In Today’s Saturday Submissions, I speak to the lovely Ciara Chapman from ‘My Chronic Pain Diary’,

Ciara is from Cork here in Ireland and is 34 years old.  As yet she is undiagnosed but has been experiencing chronic pain as a result of a nerve problem for 2 years now and she’s been getting through the experience by creating a beautiful illustrated diary.

Taken from the ‘About’ page on her site:

“I started ‘My Chronic Pain Diary’ in January 2016 as a form of Art Therapy to help me cope with the mental and physical toll Chronic Pain has taken on me. It’s a very lonely and isolating experience, even if – like me – you are fortunate enough to be surrounded by and supported by the people you love. I found the medication I was prescribed made it difficult for me to read, the words were fuzzy and I had my fill of television so I turned to my love of drawing. I hope by sharing this diary it will reach people in similar situations, whether you are experiencing physical, mental or emotional pain it is so important to remember we are not alone.” – Ciara Chapman – http://www.mychronicpaindiary.com

Please take a look at these images, I think they are so full of meaning, fun and life, very beautiful and excellently executed. I love them! Enjoy!

 

One step forward, two steps back.

Physiotherapy

Opinion after opinion after opinion…

Endless nights with little sleep

Out to sea

Help Wanted.

Rain, rain go away

Knowing your limitations

Meditation

I feel guilty sometimes

Time Freeze

 

Thanks so much to Ciara for sharing her wonderful illustrations with us, they really are stunning, please be sure to check out her link above and make a connection and please leave a comment or feedback if you relate to any of these images.

——— 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

Off To London Again!

Finally I have a date set to go to London for a consultation and possible treatment with a Neurogastroenterologist who specialises in EDS named Prof. Qasim Aziz at The Princess Grace Hospital.

I will be flying out on Saturday the 13th of May early Morning and the appointment will be at 12:30pm in London. I am going, not only because I have been recommended by my doctors here, both in Cork and Limerick that I should go for advice and more targeted help by a professional who knows EDS but because of all the trouble I have been having with my gut related issues, by far my gut problems give me the most trouble and upset with almost constant pain, nausea, vomiting and weight loss as well as occasional swallowing problems and my already diagnosed  Gut Dysmotility.

My Doctor in Cork is coordinating his treatment with Prof Aziz in London so I am having a Gastric Emptying Test on the Monday before I fly out which will help as one of the tests that needs to be done before going over. I have already had a Barium Swallow X-Ray done in February and thankfully that was all clear, so thats another test already down!

I am really hoping Aziz will help me out if he can, it would be great to finally get some sort of relief from all the symptoms. Even if he can get a treatment plan sorted that my Doctors here in both Cork and Limerick can do more needed tests and know what more to do with me, that would be a help in it’s self but he may also want me to complete treatment or tests in the UK which I can’t plan for until I know if that is even happening, so I will have to wait and see and I will keep you all posted as usual.

Keith, being my carer as well as my husband will obviously be going with me as there is no way I would be fit or healthy enough to do it all by myself.
Even as it is we have the flights over booked but won’t be able to book accommodation or flights home until we know more from the appointment, as Prof. Aziz may need me to stay over for further tests etc. So we will leave that until the last minute when we know more.

That’s kind of it for now until we fly over and it won’t be long before we will be at the day, it’s going to be a long day traveling for me and I am not the healthiest at the moment, I have had to cancel going to London from the last time until now as I wasn’t strong enough to go for a long time, but I can’t wait any longer and it must be done now. May was the closest appointment I could get so I took it.

I want to take this opportunity to thank everyone who fundraised and helped with my medical fund over the last while to help me get there, without you these trips wouldn’t be possible and with no EDS specialists in Ireland, with I as well as others fast running out of any help, we have to travel for treatment and help as we are completely alone here, medically, in Ireland.

Thank you all once again and I will keep you updated on everything that happens.

Lette (Fainting Goat!) xxx

Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.

After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)