First blog post

Ok so for my first blog I was going to tell you all a funny story about the antics and fun that me and grace have indured during our stay. However, what started off as a nice calm day turned into chaos from lunchtime. I’m being coupled up tomorrow with a new NJ…..lets hope this time we get on or at least work through our differences instead of one member of the team deciding to make a quick getaway whilst o sleep! I mean I honestly felt cheated to wake up and find that Terry was trying to sneak out! 

So anyway. I going to theatre tomorrow to join my new partner for a match made in heaven…….i wish!!! After lots of confusion over my steroid cover for the procedure they decided it would be best to move me to first on the list and come into hospital this evening! So the GO prints my bloods which are deranged again because my body just does not know how to function like any other normal human being! Then I grab my bag and medication ( well more like awkwardly bumble along with Florence the frame) and mum dad and i are in the car and straight to the triage ward. 

Whilst we are sitting having a lovely chat and suddenly go faint and dad has to practically pick me up onto the trolly. Alarm goes off everyone comes running.  2 aterial needles, nice big green cannular, an ECG, IV hydrocortisone and bolus fluids later…….i have an infection! Lovely! So now I’m on IV antibiotics……i don’t think I have any blood in me …..i think my veins are running with chemicals! I mean magic unicorn dust would be nicer!!! 

So it’s now 3am and i was moved wards where i am in a side room and I am nil by mouth ready for theatre in 5 hours time. I am scared? Yes! Do I feel like I want to do a runner? Yes! But am I going to laugh about how much sedation I will need and still fight 3 nurses to hold me down, whilst green bile is running down my cheek after it’s all done? Yes!!! With Grace by my side we can achieve anything …….. unicorns are made of magic remember

Don’t forget….sharing is caring…….and I promise the funny stories pur on their sweet little way 

A little orange light…..

I wish I could say I’m feeling better this week. But I cant. A flare on Sunday saw me feeling awful. Parasitic Pain was having a great old time and even got Shakey McShakeface involved making me bonk myself on the nose!

My poor baby chip is still not well and it could go either way.

I spent Valentine’s evening on her bed with her head in my lap. Whilst I was doing my best to massage her neck spasms with heat packs, I didn’t stand a chance of stemming the flow of my salty tears.

Of all the physical pain I’ve had; this still hurts more.

But amazing Ash, amazing as always, bought round the most romantic goodies.

My heart bursts with love as he holds me whilst I’m silently sobbing holding onto Chip. It bursts with the pain of love I feel for Chip and it bursts with the love of feeling those comforting arms envelop us both.

Amazing Ash also bought with him a sign. Yet another sign of hope…….oranges!

Ash bought me a little surprise gift and neither of us could believe it……..

A unicorn with oranges!!!!

There is always light at the end of the tunnel……iys just choosing whether or not to follow it. This little orange unicorn will show me the way…….

And chip seems much better today!!

A gentle reminder…..

I’ve been struggling. A smile on my face and a bounce in my step are like my protection against facing my own true feelings. However, like the healthy leaves they are to me, they are wilting. Struggling to hold even their own weight in the absence of adequate nutrition and sunshine, let alone my own too.


I feel like all the ones I love and care about are having a real tough time and there is nothing I can do to ease their pain.

My dear little girl Chip dog has also been very poorly. After recovering from a nasty infection from the poison of a blackthorn her back gave way. Everything in spasm. And with lots of cocktails of medication and trips to the vets, everyday I have faced the very real possibility that it may be her last.

I feel so drained emotionally and have just got home from yet another trip to the vets. After acupuncture really helping her last night, she cut her side this evening needing 11 staples. She is so strong and so brave.

After plodding up the stairs like they were the rocks of Everest I ran a bath and finally got the chance to read my messages.

That’s when it happened……..

I had a message from a lovely lady friend of mine. It was a video.

A video of an Orange!

I thought Aaaahhhhhh oranges! And took my mind to the citrusy land.

There were hands cutting into the orange.

Hmmm, salivating at the thought of that juicy goodness bursting out….

After lots of cutting and me almost slightly deliriously dreaming of oranges; something amazing happened.

The hands peeled the orange and placed the skin flat on the table…….

It was a unicorn!!!!

Like the snap of a hypnotists fingers I was back in the room…… and smiling!!!

I looked at Grace…….and I remembered. We are all given life……and we can do with it as we wish.

We can choose to ignore it’s potential and let it turn fuzzy and green and mushy and wilty like my leaves of armour.


We can shape it and mould it into something beautiful. And actually my citrus skin unicorn is made up of:

  • My hospital bed went back this week.
  • I am back at uni.
  • I have amazing friends and family.
  • I have so far maintained my weight.
  • I jumped my horse Spirit for the first time in 18 months at the weekend.
  • Me and Ash are tentatively started the search for our own nest.
  • And Chippy dog is still here!

Thank you oranges and Grace.

Sometimes we just need a gentle orange reminder of what our skin is all about.

A farewell that marks another step forward

Yesterday was a big day!

It started with a pretty intense physio session at the hospital. Although Shakey McShakeface did his best to embarrassed me, I focused and stayed in “the zone” to work hard. The physiotherapist was impressed with my progress and informed me that I lost well over 40% of my total muscle just from that one hospital stay last summer! He also reminded me that I have forever to build this muscle back up, it’s a marathon not a sprint. And, although I often get frustrated as I feel my progress is too slow, he said that it will take my body at least 18 months to 2 years to recover from last summer so I’m only a quarter of the way in. And in that time I have put on over a third of my total body weight! I’ve gone from 38kg to 52kg!!! I know have a 6 week programme to work hard at building strength and co ordination to help my brain relearn the nerve pathways to my muscles and hopefully shake off Shakey McShakeface for good!

This session also marked a farewell to my dear friend Florence the Frame. I never could have imagined needing a frame in my 20s! But Flo helped me take those first few tentative steps all those months ago. She also gave me the freedom to make the 4 metres from the bed to the sofa with Norman the NJ and all the feed attatched. It is these simple tasks in life that are so easily taken for granted. As much as I was dead against starting my partnership with Flo, she gave me such confidence in my legs ability to hold me up and for that I am eternally grateful.

Next marked my first monthly blood test! Another thing I am so grateful for after having daily bloods for 6 weeks followed by weekly for the last 6 months. 4 weeks feels like ultimate freedom!

Another positive yesterday was my dear little girl Chip. Her bandage change yesterday took a while but the vet said it was doing better than expected! She was amazing and didn’t even cry despite seeing the pain on her face! She is my little hero!! I feel so lucky to have Chip and spirit who are my inspiration everyday.

Unfortunately I was in agony last night from physio. Pain relief and hot water bottles barely muffled Parasitic Pain’s screams. It feels like a step back……. until Grace reminds me……. no pain, no gain; right??

From patient to vet nurse

This is a quick one because I am exhausted.

Over the weekend my poor little rescue greyhound Chip became a little subdued and off her food. This is always a worry as, at the age of 11, she is no spring chicken! Then she got stiff and had trouble laying down. Chip has 2 slipped discs in her back from racing which are managed conservatively, so I gave her some anti inflammatories and some tramadol (the doggy kind!)

Monday morning she seemed a little better but I had decided I would phone my vet when I was home from uni as there was just something I couldn’t put my finger on.

When I arrived home from uni (where I also acquired an acquaintance AKA Parasitic Pain) I was greeted by a limping Chip unable to bear wright down a backleg. I looked and it was swollen. I phoned the vet immediately and asked me to bring her in just over an hour. This was perfect as it gave me just enough time to shoot off to get fuelled up with my B12 injection at the doctors.

I rushed home and was worried. Chips leg was turning purple and she couldn’t stand. Mumma L phoned Daddy L who raced home from work to help us. In the 10 minutes it took him Chips paw burst open with pus. We carried her to the car and 1mile down the road we arrived at the vets and carried her.

She was kept in to give her an anaesthetic to explore the wound. At home I watched my phone and struggled to swallow my cuppa soup for tea. (Grace made me as she said I’d come too far to start failing now)

Finally the phone went…….. It was most likely a blackthorn which releases poison into the bloodstream and when it takes hold it spreads rapidly. But poor chips paw had disintegrated and I was told “you can see all the bits in the paw that you’re not meant to see!”

I collected my precious girl late last night as she is not good with anaesthetic and the memory of kennels makes it worse. My vet is fantastic with her and knows us well so was happier for her to be at home.

Between Chip, Grace and I, I think we managed a total of about 1 hours sleep!! Chip was so distressed it broke my heart, the only way she would start to settle was if her head was buried in my lap and me stroking her. It was relentless but Grace kept us going. I felt so helpless and wish it could be me.

With the sunrise came a calmer Chip. This was a combination of more drugs and the anaesthetic wearing off.

Chip is much brighter now bit she is not out of the woods. One thing is for sure though…….. me and Grace won’t leave her side 💔

In with a bang!

Oh my gosh. What a start to 2018!! As some of you will know my year always starts with becoming a year older as I gave my parents the ultimate gift to start the 90s with a bang (or a push!) by blessing them with my birth! Any of you that’s good at maths will have worked out that now makes me 28. I never really worried about my age before……. but 28 is very close to 30!! I feel like I’m going to have a midlife crisis because that’s what people do at 30. But then I feel all panicky that I’ve missed my opportunity to go through this essential midlife phenomenon because I probably passed my “midlife” a long time ago! 

Anyway, besides my minor midlife flapping, 2018 has kicked off not too shabby. It has always been a tradition to go out for a family meal on my birthday. The last 2 years this hasn’t been possible due to my health. This year I wanted to make the most of possible my last birthday without a J-PEG! (A hole into my jejunum that I can connect my special feed through like a drip) dinner would be unrealistic so we decided on lunch! My lovely grandad and auntie if made the occasion! We decided on a lovely Italian as there was lots of gluten free vegetarian choice….. I even managed a few spoonfuls of dessert! It felt fantastic!

The following days were up and down with a touch of the virus going around and a lot of fatigue. But fast forward to Monday of this week and I had my first day back at university! I think it’s safe to say that after 5 hours at uni and taking me nearly 3 days to recover ; this is going to be tough!!! 

The positives:

  • I am currently device free
  • My blood tests have gone down to once a month
  • I have returned to uni
  • I have managed to maintain my weight
  • The shortest day is behind us
  • Blue Monday can kiss our sweet ass’
  • Unicorns are life!!!!

Keep smiling you beautiful people…… it’s not too long until payday 😘❤

HO, HO, HOme for Christmas!

My Christmas began 2 days early when we arrived home from holiday to brother Chris being home aaaannnnddddd. . . . . . . Dadda L made it home! He has been working on a site out in Saudi Arabia for the last month and whilst we are used to him being away we couldn’t help but feel deflated by the strong possibility that he wouldn’t be home for this Christmas which would also be the first one without Mumma L’s dad and Dadda L’s mum.

That struck the start of a great day! Ash and I had a Christmas party to attend that evening with karaoke, secret Santa and fancy dress! With Ash’s great big bushy beard we could only go as one thing……… Joseph and Mary with Grace as baby Jesus!


The atmosphere was just magical and everyone looked great . . . . . there was even an inflatable turkey! But then came the “secret” Santa . . . . . . what are the chances of me receiving this unicorntastic treat?! Santa must have know and I had to try it out immediately!


The following day was Christmas eve and bought me a day of baking! Although I had saved my legs and sat down for most of the party, my body was still feeling like a 90 year old . . . . it’s a good job Mumma L lets me sit and spread out whilst I’m baking!

You see, this time last year I moved my trusty stead Spirit to a new stables just down the road from my house where he is looked after 24/7 meaning I can go to see him when I am well enough. Since being there I have not been well enough to spend enough time there to really get to know my fellow parents of these majestic beasts! However, they have shown me so much support, encouragement and kindness it is beyond words. So I wanted to try to say Thank You to them, the obvious choice seemed biscuits! So I made Lemon Star Shortbreads and Cranberry and White Chocolate Baulbauls for the humans and Healthy Homemade Treats (which turned out more like a cake!) for the horses. I made my own tags featuring Grace and I and trusty stead Spirit sporting a hat and bowtie!


There were cookies everywhere!!!!

Christmas morning was amazing getting to the stables for 6am so me and Mumma L could sneak around the close to 40 stables leaving the treats outside each one for the fur baby parents to find when they arrived. Everyone said they were yummy . . . . . as they weren’t gluten free I couldn’t try them so I’ll take their word for it!


I was truly spoilt with gifts for Christmas and after eating Christmas dinner on our laps due to my hospital bed taking up the space previously occupied by dining room table, we spent the afternoon with my Grandad, Auntie, Cousins and their little ones.


By boxing day I was defeated by PAS and PAS was going to make me pay. I had been invited to Ash’s family but I didn’t even have energy to brush my hair to go so it was back to bed for me, same again for the following day. Yesterday I thought I was feeling better so my amazing friend Lucy picked me up to go and see our amazing friend Kerry where I could finally meet her new horse! However, it wasn’t to be as it wasn’t long before my head became light and my vision started to fade. Lucy whisked me off back home where I spent the rest of the day with poor Mumma L rubbing my back and holding me over a bowl as I couldn’t get to the toilet whilst Dadda L got my stuff ready for the hospital. I am a baby when it comes to vomit. But now for me it is life threatening. Whilst a couple of days without most meds is reparable, the stress of vomiting releases cortisol in the body as a stress response to help our bodies cope. Because PAS has eaten my adrenal glands the only way I can get this is through my steroids. Therefore, if someone with Addison’s disease vomits they must get to the hospital immediately, unfortunately many fellow Addison’s fighters have died from this within hours. Thankfully, I was just dry heaving and after managing to swallow 3 anti sickness tablets I was able to keep my steroids down. So I have been on double dose and slept on and off since. I am in so much pain but I feel so much better today.

PAS likes to attack at the most inconvenient times, you never know what is around the corner so make the most of each day and find something to smile about. And if you can’t . . . . . .eat an Orange!

My baking collection . . . . .



Have a holly, jolly Christmas

Firstly I need to apologise for the long overdue blog! However I do have a good reason to explain my absentness. . . . . . . . I have been on holiday!


That’s right! I got the ok from the hospital to go on a last minute break so me and Amazing Ash went and stayed in Ash Lodge (it was obviously meant to be!) on a farm in the middle of nowhere in the heart of Somerset.

It was just perfect. Me and Ash have barely spent any time together this year and we really needed to get that feeling of escaping it all. Of course we didn’t because Shakey McShakeFace, Naff Off Nausea and Parasitic Pain tagged along didn’t they! So last Saturday 16th December Ash and I packed up our things (including a suitcase just for my medication) and the 2 dogs and disappeared to spend the week with cows, sheep, chickens and horses. It was so remote that there was no Wi-Fi and very patchy signal . . . . . .bliss!


The weather even came out to see us whilst we were there and we saw the most beautiful sunset overlooking the farm. One day I even managed a little walk on the beach!


We spent a day at Dunster Castle which was just beautiful. When we arrived after spending the best part of what felt like the entire morning just trying to get out of the car, we had a welcome surprise. See, I have now developed sciatica which can lead me to develop an usual gait after sitting in one position for too long, e.g the car. My lovely rescue greyhound Chip is getting to be quite an old lady at 11 years old with 2 slipped discs in her so I bought her a ramp for the car which she is still getting used to getting in and out of Ash’s Landy. This resulted in poor Ash trying to round up his excitable spaniel Willow, creaky old Chip and a girlfriend with the grace of a seal as well as his camera bag, my day bag, blanket and William the Wheelchair. We eventually made our way to the entrance to be offered a Tramper for the day! Now for those of you that don’t know what a Tramper is (neither did I) it is like a pimped up mobility scooter for off roading!!!!!


It was brilliant!!! We had a fantastic day and after struggling to climb some of the hills, Ash was pleased he wasn’t trying to push me and William with all our bags whilst controlling 2 dogs!


After lots of rest and movie days we were feeling very much at home, but there was one thing I wanted to do before we left . . . . .

Ride with Ash.

On our last day we went for an hours walk across the marshes with the owners and their 4 golden retrievers. I could finally show Ash why I rave so much about how I miss being out on Spirit as we felt the freedom of being carried effortlessly through the countryside. We even saw views of Cardiff and Barry Island!


It was all over too quickly and although my pesky crew of ailments joined us without invites and they did dictate parts of the holiday I felt that this was a massive achievement. It’s scary being away from the safety of being tucked up in my hospital bed at home with Mumma L the carer and being so far from my local hospital. I didn’t even know where the nearest hospital was! This was a big step after being confined for so long and I feel more confident and liberated.


Ash is the most amazing man I could ever wish to be in my life and looking at him on Mouse (his trusty stead for the morning) I couldn’t help but see my knight in shining armour. My rock. My confidante. My voice of reason. My best friend. I would run a million miles from this disease given half the chance, yet Ash has chosen for hospitals, needles, an almost non-existent social life and disability to be a part of his life as the sacrifice to be my boyfriend. And for that I will always be eternally grateful and in awe of his resilience and ability to stay calm. He is my inspiration and writing this now, with tears rolling down my cheeks, I feel as if my heart is going to burst as it aches to be with him again. I am rubbish at telling him how amazing he is and I know he will hate me when he reads this! No doubt he will have pleasure if finding a way to make things even!

Although when we arrived home after a week to find I had 3 letters from the hospital with 2 more appointments coming up, when I think back to Ash Lodge with Ash I feel that brief feeling of freedom and tranquillity. Oranges


An important announcement 

Gosh the last few days have flown by! So I will get you up to speed.

On Tuesday morning it was all systems go despite arriving home late Monday night. The district nurse came round to take my bloods and then some workman came round to check the metre as they were working on the power lines so we would be without electricity. It’s that just typical on a cold dark winters day and being physically and mentally drained when you just want to curl up and have a duvet day, that is the day when there is no power! 

Anyway there wasn’t much time to tax as the afternoon consisted of travelling to my local hospital to meet with my stomach surgeon, pain consultant and specialist dietician. To say the meeting was a little tense is an understatement! All 3 had different views and opinions on what course of treatment would be in my best interests. What about what I want?? 

After an hour of discussions it was decided that I need to make a desicion on whether I want to have another feeding tube put back in or have an operation to put a hole into my intestine and put feed through that which is called a PEG-J. Each one has they’re pros and cons and to be perfectly Frank the future terrifies me.

But…….. this also happened at the end of the consultation!!! 

Ok so I wasn’t “ready” to part ways with Norman according to the professionals but due to the fact that Norman had cause a pressure ulcer in my septum which was weeping and Norman was becoming unreliable in accepting feed, they had no choice but to separate us and I couldn’t be happier. I am thankful to him for saving my life but I had become fatigued with his constant presence that attracted stares and whispers everytime I went out in public. It was a mixed emotion when we separated. I was so excited but whilst the nurse was pulling all 1 and a half metres of him out, rubbing against that pressure ulcer all the way and bringing a constant flow of bile up with him, I couldn’t help but wish it wasn’t happening. But then he was out! He had turned a deep shade of brown due to sitting in acid for over 5 months!!! My nose is finally starting to feel better. For those of you that have never had the pleasure of experiencing the aroma of an ulcer (not the ones in your mouth!) It is awful! Its a pungent smell of musty, rotting flesh. Having that smell sitting in my nose was not pleasent! 

The following day me and Mumma L celebrated by having a little wonder around the magical winter wonderland at Perrywoods garden centre.

Unfortunately I have had to go back on my beta blockers as in the few days I was off it my heart began to struggle again and had a resting rate of 120 which would explain the chest pain! I also need to work hard with drinking my prescribed supplement drinks as it will provide me with essential fat, protein and calories packed into small portions. They are like drinking thick slimy tar with flavours that are . . . . . Not what they say on the bottle! But I’m going to give it my all. 

All in all this week has been another rollercoaster of emotions but I get a lovely surprise everytime I look in the mirror to see my face as a free non-tube feeding woman! It will take some getting used to but I have a feeling it’s going to be something that I will enjoy 😊

My Time at Bart’s

I can’t believe I week has gone by since my last blog. It is all a blur but I have finally plucked up the courage to write this.

Thursday was pretty good when a Healthcare Assistant came over with homemade cake and posh ice cream that is donated to the ward every Thursday from a local supermarket! Unfortunately the cake wasn’t gluten free and the ice cream was too cold for me (who would have thought it…….cold ice cream!) but Mumma L and Chris were more than happy to clear the lot. They do say one man’s rubbish is another man’s treasure! But what a wonderful surprise and it certainly lifted my spirits!


Friday is where things started to go a little wobbly. Whilst I was getting used to the seemingly endless poking and prodding and my oh so faithful veins giving up at every opportunity, I was feeling excited to receive my iron infusion! Turns out that I have not been absorbing some of my medication so the only option was straight into the vein! So my juicy iron was hooked up and the infusion cautiously begun. I had no idea that it can be so dangerous as it causes anaphylaxis in some people!!! So after the infusion had tediously dripped for 15 minutes my observations were taken again and I felt great so the doctors gave the green light to send the rest through over the next couple of hours. They watched me closely and everything was great. Grace thought it was magic orange juice!


As it was Friday evening Mumma L needed to get home having stayed in the hospital accommodation all week she needed clean clothes and a break! Mumma L leaving sparked a flow of emotion. All of a sudden I felt so alone and so far away from everyone. I couldn’t tell whether my heart felt fit to burst out of my chest at 100mph due to being blessed with Agro Anxiety’s presence or the fact the doctors were trialling me off of my beta blockers! I cried and cried and shook with fear. Why? I was in the safest hands. The staff were like angels from heaven. They weren’t planning anything other than blood tests over the weekend! As I held onto Grace she reminded me of oranges. With oranges in my mind I decided to occupy my mind . . . . . what else could be more appropriate to make me look forward to than writing my Christmas cards! So that’s what me and Grace did! As we did this, I began to feel an itch……. of course!!! I was having a reaction to the iron. All be it nothing life threatening it meant I would itch for the next 5 days and it would jeopardise me having the regular infusions I will need! Thankfully  the doctors agreed I could continue to have it as it didn’t effect my breathing.


Saturday bought much excitement as Ash and my friend Katy came to visit!!!! We had a great time chatting and giggling and I felt great listening to their stories of how these 2 country people had a great adventure travelling on the train and trying to navigate their way to me through the giant maze called London. Me and Grace showed them round the ward and to the day room where relatives were free to make hot drinks and munch on biscuits!


When Katy had to leave later in the afternoon Ash took me out for a little fresh air…… the first time going outside since Monday. I say fresh air but I really mean different air as the busy congested streets of London are worlds away from the quiet green fields I call home. Nevertheless it was good to get out and show Grace what the capital was like! After crossing 2 roads and travelling a total distance of less than 0.2miles to a local coffee shop, only 2 country bumpkins, a unicorn and a wheelchair could get lost finding their way back. It was great fun!


Sunday came and I was excited to see Ash again. However whilst I was patiently waiting I felt very hot. I went to look for something next to my bed and it all went black…..

Next thing I know I’m on the floor with multiple doctors surrounding me. To add to the humiliation they had to lift me back into bed using a full body hoist due to me feeling the full force of Parasitic Pain! My blood pressure was very low despite having eaten and drunk that morning. Ash came and his big smile quickly turned to a frown as he was informed of the recent events. Parasitic Pain was in my head….. literally! Even morphine couldn’t get rid of him and the lights only came him more power. After 3 litres of Hartman’s solution (a drip containing sugars and electrolytes) my blood pressure didn’t stabilise. So the decision was made to call the resuscitation team and to take me for a CT scan. We were down the lift, in and out the scanner and back on the ward in 20 minutes! The doctor even pushed the bed! (The staff here really were amazing!) Thankfully the CT scan didn’t show up anything other than my perfectly normal brain (yep I have pictures as proof!) so all the lights were turned off and I was topped up with more pain relief and fluids. I dozed off and when I woke I was upset to find poor Ash had spent the whole afternoon and evening watching me sleep……. apparently Grace wasn’t too chatty either!


He left me to get a good nights sleep. Well……… after 6 litres of fluid in 18 hours my kidneys were working overtime! Under doctor’s strict orders to the nurses I was not allowed out of bed which meant one thing  . . . . . . the bed pan! The poor nurses were in and out all night. Now, if any of you have ever had the pleasure of trying to balance yourself precariously on a bed pan you will understand it is not the easiest of tasks. Couple this with my morphine induced mind resembling a tipsy teenager on a Saturday night and this could only mean one thing. A change of bedsheets and clothes. Again and again! In the end the poor nurses just dressed me in a practical hospital gown….. Grace found this highly amusing! Thankfully when Monday morning arrived the doctors allowed me to get out of bed and my angelic healthcare assistant washed my hair, helped me shower and cream to make me feel more human again!


As my observations had improved and I was due a review with a team of people including the stomach surgeon the following day, it was all hands on deck to get me home. They did a fantastic job and gave me everything I needed, including a lovely injection! It was very painful and although me and Grace thought of oranges, I needed to lay down after When I felt I was back in the room I felt for my nurse as she told me that she knew it was going to be nasty when drawing it up was like syrup!

This feels like a natural place to finish this blog. I cannot fault the world class care I received at Bart’s and we are one step closer to hopefully having better control over PAS. The staff were amazing and amongst the tears there were giggles and I know if anyone can help us battle PAS it’s them!



Quick update…..

After 3 days in Barts me and Grace are shattered! It has been non stop since we arrived. Blood tests, drips, with holding steroids (which makes you feel like death warmed up!), periods of fasting, periods of laying flat/sitting up, scans, physiotherapy and endless questions.

So far my BP has dropped to 72/38, blood sugar to 2.6 and veins have been misbehaving. 


We have met:

  • Endocrine team
  • A team of 5 dieticians (from consultants to nurses)
  • Physiotherapists 
  • Specialist nurses
  • Radiographers

All have which have been super thorough, thoughtful and have smiles on their faces. They have made us feel at ease and at home despite being absolutely petrified. They have spent hours with us picking my body apart from the highest strand of hair on my head all the way down to my little toe! I think this is the first spare hour I’ve had since we arrived on Monday! 

There have been many times where I have been thinking oranges and no doubt there’s more to come as the current plan involves:

  • More blood tests
  • Scans
  • ?endoscopy + colonoscopy
  • ENT consultants
  • Pain team
  • Cardiology team
  • More physiotherapy 

And we have to stay until at least Monday! 

Although I am exhausted and frightened this places is full of the oranges I need to be fresh and juicy and bouncing around.

Oranges. Oranges. Oranges.