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!)

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

Saturday Submissions – With Dr. Liam Farrell

It’s a day late, I know, I know, I’m sorry – (It will be worth it, promise!) I haven’t been well in the last few weeks, I completely forgot all about Saturday Submissions last week and then I do it a day late this week, oh dear! I can do better than this, surely!!

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This week I speak to Dr. Liam Farrell, yes, a real doctor, or at least used to be a family GP, now better known as an award winning columnist and broadcaster. You can find Liam over on Twitter as @drlfarrell.

 

Why presentations are best served rare

We are doctors; we do terrible things to people. They come into the surgery like healthy folk and go out as patients. If they’re really unlucky we confine them to an institution where the occupants are routinely left immobile, deprived of sleep, fed a diet that is tasteless and nutritionally marginal, and experience the de-humanizing indignity of being half-naked all the time.

‏The average age of a patient in general practice is 75 years old.. Many have multiple diagnoses, and their care is incredibly complex, and above all requires more of our time. But our time is in increasingly short supply, so much of it wasted on the worried well and on health promotion. If we reckon on 15 mins per consultation, a family doctor with 2500 patients would spend 7.4 hours per day to deliver all recommended preventive care and 10.6 hrs per day to deliver all recommended chronic care.

‏This leaves a generous 6 hours every day for those pesky acutely ill patients, sick certs, insurance and passport and DLA forms, paperwork, eating, sleeping, banging our heads against the wall in sheer frustration, toileting and reproducing. But what is never understood, by patients, the general public, the media, bureaucrats, managers or politicians, is the huge numbers of people family doctors see who aren’t sick, and who have nothing wrong with them; this really can’t be comprehended unless you sit in with a family doctor for a whole surgery. A huge part of our job is telling people what they don’t have. Unfortunately, ‘nothing wrong with you’ is a retrospective diagnosis and can only be made after the consultation.

As the threshold for attending healthcare services grows ever lower, there are more and more worried well, too much screening and over-treatment. It becomes harder and harder to pick out the really sick person from amongst the ranks of the worried well; when you are looking for a needle in a haystack, the last thing you need is more hay. There is consequently not enough time and resources to the really sick; so everyone loses, especially those with hard to recognise rare diseases.

As The Fat Man said in The House of God, when a medical student hears hoof-beats outside a window, he thinks it’s a zebra.

Which might be true, of course, in certain circumstances – if you were in practice in the Serengeti, for example (curiously, I was once in the Serengeti, heard hoof-beats outside my window, peered through the early morning mist and saw only an old cow).
A medical axiom used to be that common things are common and uncommon presentations of common diseases are more common than common presentations of uncommon diseases. But this is now known to be misleading. Taken all together, rare diseases, and rare variants of common diseases, are not uncommon. And diagnosing rare diseases is very difficult; it’s not as if there is a are disease specialist we can refer patients to.

I do have some hard-earned experience. As an intern, I saw a young lad in casualty. He had fainted at a disco (yes, it was that long ago, Saturday Night Fever was quite fashionable. Old age is creeping up on me, not sure why but fairly sure it’s up to no good) and he had a few unusual skin lesions and a labile BP.

These days, I doubt if I would be able to recognise a phaeochromocytoma ( a rare tumour of the adrenal glands) if one walked up and assaulted me with a blunt speculum (I’ve been flogged into apathy by too many URTIs and sick certs, rare and interesting diseases only present to other doctors), but I was young then, fresh and sharp and so hip, I could hardly see over my pelvis.

I wrote ‘possible neurofibromatosis?’, ‘possible phaeo?’ on the chart and admitted the young man to the ward. I was too green to realise the importance of hoarding unusual cases to myself, for my own advancement, and sure enough, the rumour spread around the hospital as fast as an epidemic of flaming gonorrhoea.

Later, when I went to check up on my patient, I found him buried under a tide of medical students, SHOs and research registrars, all keen for a piece of the glory, all ordering 24-hour urines, all dreaming of a case report for the peer-reviewed journals and another notch on their CVs.

‘Help me, doc,’ he said, desperately, ‘they’re suffocating me.’ I whipped away the students, but the others were far above me in the hierarchy and I could offer little succour.

‘Sorry, pal,’ I said. ‘It’s a common complication of uncommon diseases.’

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Thank you so very much to Liam for providing todays Saturday Submissions!
What did you think of his post?
Do you relate as a medical Zebra?

Please leave a comment and let Liam know what you think, be sure to check out his Twitter Link and make a new connection! 🙂

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

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) 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 Caroline from Living With PoTS!

Hi everyone! I’m Caroline, I’m a 21-year-old student, blogging about life with a chronic illness. You can find me on Twitter , The Mighty , and at my blog Living With PoTS


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Whilst not yet diagnosed, I’ve been suffering from PoTS symptoms for around 7 years, which have dramatically worsened over the last few years. My main symptoms are severe dizziness and fatigue when standing, as well as joint pain (which is probably related to some other undiagnosed condition). Recently, I made the decision to use a wheelchair for the first time, which was a pretty big decision and something I want to talk about.

I want to start off this post by saying that choosing how and when to use a wheelchair is an incredibly personal decision, and this is only my own experience.

 

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Why a wheelchair?

Ever since I realised that there was a genuine health reason for me being in so much pain, and not felt like I was being lazy, I’ve been trying to work around it. Whilst I can manage my day-to-day life relatively well, trips away are a massive struggle. Last month, I had what should have been an amazing trip to London planned for my best friend’s 21st birthday, two whole days of sightseeing, shopping and shows. Obviously, with it being such an important birthday, I wanted to make sure she had an amazing time, and that me being tired and in pain didn’t get in the way.

Worries

It’s safe to say, I had a lot of worries about starting to use a wheelchair. The practicalities: how do you borrow one? How do you steer it? Where are the brakes? The stigma: what will people think when I ask for one? And when I’m able to stand up out of the chair? And personally, admitting to myself that it was something that I needed, on occasions, and that it wasn’t a big deal, that using a wheelchair for a special occasion like this wasn’t making a commitment for the rest of my life.

How did it go?

After chatting to a few friends, and browsing museums to find one that hired wheelchairs, I decided to go for it, and on arrival at the Natural History Museum I went to the cloakroom, signed a disclaimer, and 30 seconds later was equipped with a wheelchair. After a bit of figuring out how to fit me, my coat and way too many shopping bags in it, we were go.

I started off being pushed, but the lack of control really bothered me, so I decided I was going to push myself which worked much better (after a few incidents getting around corners anyway!). Whilst my arms were so sore the next day, I think that’s something I’d get used to.

Practically, it was better than I expected. People were on the whole really polite, happy to move out of the way, and no-one I noticed gave me any weird looks or anything. In terms of the museum it was hard going; I couldn’t see quite a lot of the displays, and trying to find lifts was mission impossible.

Overall though, it’s a big thumbs up for the wheelchair. Whilst it is not something I would want (or need) to use every day at this point, for occasions like this, where I’m trying to pack a lot of activities into a few days, it makes things so much easier. It means I can do so much more, without the repercussions of the next few days, and more importantly (for me at least), it means I’m not impacting on others as much.

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Thank you so very much to Caroline for providing todays Saturday Submissions!
Do you relate to how she felt?
If you use a wheelchair, did you find the initial transfer to using the device difficult?

Please leave a comment and let Caroline know what you think, be sure to check out her social media links above and make a new connection! 🙂

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

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) 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

Looking for Guest Bloggers Please!

guest-blogging

 

Hi folks,

I am still on the lookout for guest posters for this little bloggie, I would appreciate hearing back from anyone with or in contact with a chronic illness. Patients, Partners, Family, Friends, Carers, Therapists, Doctors, anyone who would like to take part. If you know of anyone who might like to, please share this with them, thank you!

It can be completely anonymous or open, whichever you prefer, please just follow the steps below to take part and I really look forward to hearing from you 🙂

Also, a very BIG Thank You to those who have submitted something already, I hugely appreciate the efforts, thank you 🙂

——— Wanna Be Part of Guest Blog Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) 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

 

 

Lette 🙂

Admitted after the ERCP – Possible Bowel Pacemaker!

Things never just go straight forward, do they? Nope! and of course, this time was no exception!

In I went to the UHL on Tuesday the 21st at midday, all prepared for my ERCP procedure to be done and so I could be kicked back home that evening to recover, however, little did we realise just how long it would actually take!

They popped me on a trolly as soon as I arrived as I had been dizzy all morning and they didn’t want a risk of me fainting and deemed it best that I wait in as comfortable a position as possible as I could be waiting around for a few hours.

I said my goodbyes to Keith and the nurses told us to expect to be in until at least after 5pm. Keith went home and I lay on the trolly waiting for things to start happening. There wasn’t even signal in this particular part of the hospital for my phone so I had no internet, texting or anything to distract myself!

All was well until they needed to take some blood from me and wanted to insert an IV line. This is when all the fun started!

3 nurses tried and failed, 2 lads from the Cath Lab tried on not only my hands and arms but also on my feet (Very uncomfortable to say the least!) and failed, One of the theater consultants came out from doing an operation to take a look at my veins, checked them over and said, “Nope! I will hand it over to Dr. Moloney!” (referring to the consultant who would be doing my procedure in theater)

Finally at about 6pm, Dr. Moloney comes out of theater to take a look at my veins and decides, “We don’t need bloods anyway, not to worry about it and I will pop an IV in, in theater before the procedure”
So that ended the long wait around waiting for someone to be able to find a vein, now it was time to actually get this done! The nurse helped me into a very sexy blue paper theater outfit and pushed me into theater where there were 2 nurses, the first tall doctor who had earlier come out to check my veins and said ‘Nope!” and the good doctor himself who actually successfully found IV access after a few attempts, Excellent, time for sedation… am, about that…!

I have a sensitivity to Benzodiazepines, having ended up in ICU last year after being treated with them for seizures I started having in May 2014. It turned out the first seizure was caused by a complete once off event of a lack of oxygen to the brain after a Vasovagal Syncope where I had stopped breathing. The Ambulance staff immediately treated me with Benzos, the standard treatment to stop seizures, not realizing that the more Benzos they treated me with the worse my seizures got. I was treated for these seizures over the course of about 3 months with these drugs until such time as I ended up in the ICU before realising that it was the Benzos causing all the trouble.

Thing is, Benzos are used as sedatives in minor surgeries and procedures too, which was meant for this ERCP, so the Dr. decided to sedate me through the IV with something else they had, that would make me feel a little drunk, but I was still wide awake and feeling everything!

They sprayed the back of my throat with something nasty tasting to numb it and popped a round yellow thing in my mouth, between my teeth to keep my mouth open so that the endoscope could easily pass through. My eyes watered as the scope went down my throat, into the stomach and pushed through the duodenum.

I kicked out and squirmed in intense pain as soon as this happened. I gave the doctors and nurses a good fright too as they were under the impression that I was sedated!

The Dr. looks down at me,
“You’re still with me, yeah?”

I look directly at him while gripping my right side in pain and I nod quickly!

He looks at the nurses and said
“Ok, no cutting today, lets just do the Botox Injection to numb the site, make it quick!”

He tells the other doctor to give me extra pain relief and sedative as he quickly tries to inject the site. I feel the sharp pinches of the needle, they are completely bearable compared to the pressure and pain I feel because I presume of wherever the scope is after leaning.

The procedure is done quickly, I am given more pain relief and feel the earlier sedative continue to tingle the back of my skull but the pain is still there as I am wheeled into the recovery area to be monitored.

The Doctor comes out to check on me and says that if the pain continues I will have to be admitted. I am watched for a couple of hours where I begin to spike a temperature, a reg doctor is called for me, I am put on IV fluids and painkillers and am admitted to a ward by 8:30pm.

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In the confusion of trying to get me settled into the ward, make sure that I am properly assessed and medicated, the transfer of my regular meds list (Daily meds for Pots and EDS pain, some of which I cant just suddenly stop) to the nurses on the ward went a little askew and would come back to haunt me in the next few days, but ill get to that in a minute!

After many uncomfortable, sweaty, loud and painful hours they finally found a concoction of meds and opiates that got on top of my pain enough for me to want to rest for the night without feeling the need to moan loudly and annoy others in the room. I didn’t sleep, even with a sleeping tablet and much morphine but I really needed the rest.

I ended up staying in hospital over the course of a full week, in lots of pain and having major trouble with my Gastroparesis because of the opiates I was on. They wanted to keep an eye on my bloods and me to make sure nothing dangerous happened during the ERCP, incase I may have an infection or something as I was spiking temperatures on some days but thankfully this was not the case, I was just in a lot of pain.

On one day, I requested pain meds in plenty of time as I felt pain coming on only for the nurses to have been busy and left me without for a couple of hours. I ended up fainting after returning to my bed from the bathroom and I frightened the other ladies on the ward!

It turned out that when they initially admitted me to the ward my regular meds list got taken down wrong and they hadn’t been giving me my full regimen of meds that I normally take so my bp was all over the place and on the day I was due to be released my HR went up to 163bpm but settled again later with rest.

Prior to letting me go my Gastro surgeon came to talk with me and went through my meds and everything I would need going forward to help with pain and the Gastroparesis difficulties.

It looks as though things are getting worse in that department. I am losing weight, having difficulty eating anything without severe pain, bloating, nausea and vomiting and he mentioned the possible need for a Pacemaker in the bowel in the not too distant future to help with the ‘slow’ and sometimes ‘non existent’ transit in my gut, of which he wants to discuss further on my next appointment with him which is the 15th of Sept.

I was let go home a week after being admitted on raised pain meds and antiemetics with orders to take it slow and steady until they see me next month. I have been very sore and very sick. Pretty much bed bound nearly every day since being released and have even had a small seizure for the first time in over a year but I am able to keep the bright side out. Even lying in bed there are things to watch and I am eternally grateful for my wonderful husband who provides all of my supports.

So for now I am recovering slowly, I will see the specialist again next month and until then, I will keep you all updated with things as much as I am physically able 🙂 Ideally I need to get back over to London where they are specialised in those with EDS, to meet a neurogastroenterologist however, I need to get better before being able to travel once again, can you believe it has been a whole year this month since I first went to London for treatment? that story can be read here 🙂

Please remember, I am most easily able to keep the Facebook and Twitter pages up to date most frequently so be sure to check us out over there too for almost daily updates and thank you for following this humble bloggy! 🙂

Be Careful Who You Listen To When Advice is Given!

You do, you really sometimes have to just roll with it and turn a blind eye to certain things. Mainly other people and their pie in the sky, inexperienced views!

Since being in the wheelchair and hitting, somewhat ‘hard times’, some people can be great to start giving you advice.
…The wrong advice!

It is not the case for everyone, obviously this is just a handful of people I speak about, and I have just come to the idea that some people are just a little dim and mean no real harm in what they are saying!

I consider myself very, ‘with it’. I can tell the wood from the trees and know when to laugh off certain things, but for other people who may be in a vulnerable mental state having ended up in a wheelchair, out of work, and completely dependent on their better half for the majority of everyday things, this advice could be taken up wrong or could push a more vulnerable person over the edge.

You have to know when and what to take with a pinch of salt.

For example, a few close people to us have tried to give practical living advice to us, given our new situation and the phrase most often thrown out there is; “All you have to do is keep positive”, Keep positive and magical positive things will start to happen, right?!

No! I can get down, I can feel angry, I can feel like wanting to be pissed off and give out about my situation, but I am rational and practical too and I understand that these things happen to good people and you just have to learn to adapt to a new, given situation because it is completely out of your control and that is just that. I am a very positive person, nearly all the time, quite childish in my approach to life actually to the point that I get over excited and find joy over the most trivial things! but sometimes a bit of negativity bursts out of me through emotion and you know what? THAT’S PERFECTLY OK! it is perfectly NORMAL, and that is good to get out of your system too! It is like telling someone who is going through depression to “Stay positive”, that is so condescending, because if they could just stay positive, they would do it and not be depressed, would they? See where I am coming from?!

What pisses me off most though are these people who keep saying this “Keep positive” and “try this” and “Try that” advice, have no idea or experience of what it is to actually go through something like this. They are speaking from an outside looking in perspective which is just so far removed from the real life situation that is actually going on, so, how can they really give any advice?

It is not advice they should be giving.

Love, Kindness, A listening Ear and Understanding is what is needed most of all. Not advice. Not, “Just keep positive and all will be ok”, because that is not how things work.

When something like this happens to a loved one, a friend, an acquaintance. All we want is someone to listen and understand. A hug, A pat on the shoulder, hold our hand and cry with us if that is what it takes, anything, But don’t give advice unless you have been in the same situation, otherwise it is just perceived as insincere and condescending.

Just be there for that someone and help them get through what they are going through. That is more welcome than anything you could offer in the advice department 🙂