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 😊

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. 

But…….

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.

Xxxx

Keep thinking about Oranges……

Well the day has arrived……..me and mumma L are on our way to Barts! We have a car full of stuff! There is a whole small suitcase (with wheels) just for my medication and feed for less than a week! I’m hoping that’s all I’ll need.

Since I got the call from Doc last week I have been plagued with nightmares and sweats giving Agro Anxiety a field day! 

Mumma L has been fantastic making sure all appointments were cancelled for this week and generally organizing……being ill is a full time job both for myself and Executive PA Mumma L!!

After all her hard work I thought it only fair to give her the weekend off for her to craft and see her friend. So that meant that Amazing Ash was on babysitting duty for me! We packed it full to the brim to try get my mind busy. So on Saturday he took me and Grace to Tropical Wings zoo! It was filled with the most amazing animals and the warmth of the greenhouse was all the more amazing with the silent flutter of butterflies in front of your face contrasting the noisy chirping of the birds up high. 

If it hadn’t of been so cold I could have watched the animals for hours.

Unfortunately being a Saturday there were a fair few children. Some of which spent more time staring at Norman the NJ than at the animals! 

Agro Anxiety would leap on these opportunities to make me feel like there’s a cube in my throat, however Grace would remind me that they are just children and 1) I would be just as fascinated by a grown woman in a wheelchair with a feeding tube and a unicorn! And 2) I’m setting an example. To not be embarrassed. To be proud of who we are no matter what we look like. To show that whatever limitations life may throw at you it doesn’t have to stop you having fun! 

Sunday was a Spirit day. We took him for a stroll in the cold afternoon November sun.

 

Ash was amazing as always and helped me pack as Agro Anxiety deciding to prevent my brain from functioning in a normal manner. Then it was time to say goodbye. Not just to Ash (he can’t visit during the week as it’s too late after work) but to Chip dog too! She is going to stay with Ash’s parents and her best friend Willow dog! 

I didn’t go to bed last night as Agro Anxiety wouldn’t let me. So I curled up on the sofa staring at the pictures on the TV. I managed to doze a couple of times before the sun began to rise trying to break through the heavy clouds that were releasing great big drops of water.

I received a lovely message and picture of Chop dog having a lay in…….she definitely wasnt crying about leaving me…… I was the only one doing the crying!

So I couldn’t resist the opportunity to pop and see Spirit. The air began to dry and we managed a quick walk round the farm before lots of scratches and cuddles. 

That leads me to now. In the car. On the A12.

Petrified

Oranges. Oranges. Oranges!!!!

‘Tiss the season to be jolly……

Yesterday morning started with a message from my GP to say that I need to have an urgent blood test as my weekly test from Tuesday had come back deranged. I was disheartened as last week’s came back “normal” and I need to have 6 consecutive weeks of these “normal” parameters before I can have them reduced to once a month. So after only 2 isolated “normal” results out of a possible 18 I was feeling a little deflated. Although it did offer me an explanation as to why I was feeling so grotty with Foe Fatigue, Parasitic Pain and Shakey McShake face hanging round me like a bad smell.

So I grotted around the house in my PJs, festering in my drearisome mood, leaking that foul odour. That night I was supposed to be going to a Christmas event at the garden centre where my dear friend Amy works and good old Ash said he would work an early shift so he could finish early, pick the lovely Jackie up, come and get me and then drive the 30 minutes there. Looks like PAS was going to ruin more plans. Well, it was a cold day. I wasn’t feeling the Christmas vibe. Maybe a night in on the sofa would be ok?

NO!!!!!!!!!! I had been looking forward to this for weeks! We all had a plan worked out……..PAS was not going to win this time!!!!!! Anyway, it will be Grace’s first Christmas……..I can’t be a scrooge!

So I climbed Mount Staircase so Bubblymazeballs Bath could envelope me in warm soapy, smell obliterating suds. At least it would keep the troublesome threesome (Ppain, Ffatigue and SMcFace) away for the meantime. I pulled on some clothes, powdered my face and forced a brush through my hair whilst Grace sat there and watched because she is always perfect because that’s just how unicorns are!

The doorbell went and before we knew it we were in a magical winter wonderland. Our eyes were wide, jaws open as we looked around taking in all the beautiful trees and gifts and goodies all covered in a stunning array of silver glitter. Then we were like excited children on blue smarties as we spotted something, dashed over to show eachother before abandoning it for the next magical item we saw. Grace was in awe.

There was so much to see but everyone’s bellies were getting cross with hunger. So we headed over to fill ourselves with the glorious warming food on offer. I even managed a few chips which Norman didn’t mind.

Then we strolled back out all be it slightly slower than before; a sure sign of contented gorging (even though I had William the Wheelchair to help carry me round). There was a band playing Christmas hymns, mulled wine, roasted chestnuts, lucky dips, gin and beer tasting, local produce and twinkling lights all amongst a magical forest.

Then we stumbled across Santa!!!! Grace could hardly contain herself and leapt towards him offering her hoof before I had barely had a chance to introduce her! Santa was lovely and we even got a cuddle and a kiss before he let us into his grotto! So we crept in with Santa’s musty beard still strong in our noses to find a pathway through Narnia at Christmas!

There were even 4 beautiful Queens ……..

Soon the night had to come to an end. We kissed Amy goodbye and travelled back in the car the only way we could……….blasting out a Christmas playlist! I can quite confidently say that the festive season has begun and despite the trials and tribulations of this year……. ’tiss the season to be Jolly.

Thank you. Sharing is caring so share the fabulous festive feeling xxx

The mind plays tricks so smile to trick the mind.

Ok this week has been a bit of a struggle with hospital/doctors appointments everyday this week apart from Friday. I was also extremely fatigued due to by B12 injection being die which I wincingly but gratefully received on Thursday. I also had my first proper CBT session after it was out on hold when I was admitted back in June. It was positive and I felt good and excited to start my homework. Friday also arrived and I felt excited about brother Chris coming to visit and Ash bought me a beautiful unicorn surprise! He is called Black and he is “the brave one” and he joins my previous unicorn called Mia “the calm one”. Two very appropriate companions to help guide me I feel! 

However, the feeling of relief at having survived the week was short lived when my dream unicorn bubble was burst that Friday evening. 

Let me introduce you to Agro Anxiety; a dear accquantaince that has followed me like a shadow for most of my life. He has been becoming an increasingly demanding part of my life over the last month.

On Friday night, when I should have been enjoying having my nails painted with a remembrance theme by my long suffering, doting boyfriend, instead our little party was gate crashed by Agro Anxiety. I felt him creeping up on me……. then he tapped me on the shoulder. Instead of ignoring him I made the mistake of giving him my attention and turned round to look at him. 

Bam!

Without warning he consumed my whole body. All of my senses. 

I was no longer in the safety of my humble abode in the month of November. I was back there. It was June. I was laying in that bed. In “hotel” hospital. The pprofessionals working hard on my body to bring me back. I could hear their vioces; quick and firm, with a panicked undertone attempted to be masked with a calm exterior. As they worked I was trying to say to them “I am here, don’t let me slip away”. Only I was was slipping further and further back. I was trying to shout but no words were coming out, I was desperately trying to cling on to life but I was slipping like my hands were covered in butter. 

Eventually I heard Ash and my parents and my eyes snapped open. I was back I had made it. However none of that was true. It was only a flashback. “Only” a flashback. When I thought no one could hear me and I couldn’t grab onto anything in reality I was screaming so loud my voice was scratchy and I was gripping so hard onto my bad that my knuckles were white. Then when I tried to explain to my fear filled family what had happened Agro Anxiety pulled me back. Once again it passed and I came back to reality. I was shivering yet sweating. I was petrified. I eventually managed to explain to my family but I cried for hours. I was finally calm enough for everyone to leave me and retreat to bed about 3am. However I was too scared to close my eyes. Instead a cuddled up to Grace on the sofa and watched a film. 

Yesterday we all felt rough. Yet Ash came over and we had a quiet day on the sofa with brother Chris. Ash kept me safe wrapped in his arms. I finally started to feel better in the evening and thankfully had a deep much needed sleep last night. 

Part of my CBT session was about acting the way you want to. Like acting calm and happy when inside you could be anxious and down. Eventually you see that this new behaviour becomes habit and true. So this is what I will do. I started off this morning messing around being my goofy self and ended up laughing not only on the outside but on the inside too! 
I was very indecisive about opening up about this. Why? Because I feel embarrassed and ashamed. Ebarassed that I had lost control, ashamed about the fear I installed on my family.

So why did I decide to post this? Because I want to help break this stigma of mental health. It can happen to anyone. I want people who have been through flashbacks or anxiety to feel proud of who they are. Mental health does not define what kind of person you are. I want people to feel empowered by the fact they carry on despite whatever inner demons they may be fighting. 

We can all feel the bad but we can also look for the good. I still consider myself lucky and that is what makes me smile. If you physically smile you can trick yourself into smiling for real. Try it! Ending this blog I am smiling for real…….. the sun is shining and I’ve been juiced up with B12 so parasitic pain should back off with the fatigue soon!!! I hope they take Agro Anxiety with them too! 

Thank you for reading. Sharing is caring xxx

How could you not laugh for real at this??

What a wonderful weekend!

Where to start?? 

Saturday was full of giddy anticipation for the night ahead. Me Ash and Grace were busy doing some last minute shopping in town and before we knew it, it was time to get changed into warm clothes to fight the November elements. As Willow (Ash’s dog) was coming with her humans, Chip needed help to get dressed too in her beautiful bandana and her posh polo collar. 

Then the door bell rang and the night begun! My friends and Ash’s parents walked through the door bringing with them the anticipation of the brilliance of bonfire night.

But first it was time to feed our bellies and what better way to prepare for the crisp November night than with a warming chilli and jacket potatoes? Well, chilli is still a little rich for me but I still enjoyed the comfort of picking at a steaming spud. Dessert was a strange one, following on with the Mexican theme Mumma L made deep fried ice cream. Now I envisaged crispy balls filled with melty ice cream. However, Mumma L produced a giant ice cream slab! It was huge but it did taste delicious as we tucked in around the fire.

Now it was time for the thing we had all been so patiently waiting for…….fireworks!!! 

There was all the quiet jittery chatting as we waited for Daddy L to get the surprise filled cardboard box lit. Then as soon as we saw the torch flying around with Daddy L running running towards us we all screamed “ruuuuuunnnnn” followed by the “oooooooo” and “aaaaahhhhhh” that are compulsory firework appreciation noises. This cycle repeated with each box producing a variety of colours, shapes, noises and explosions. 

Everyone knows you can’t have fireworks without the sparkles! So we danced around making shapes, spelling our names and pretending to be wizards before it was time to head inside to the warm and drink some hot spiced apple juice.

Sunday followed with just as much fun. Ash took me to see my gorgeous Spirit and we went for a walk round the farm in the glorious sunshine. Then we headed home to start cooking! Having such a restricted diet proves difficult to find yummy things that are gluten free and don’t attract Naffoff Nausea so I decided to try making my own. With the help of Ash’s muscles,  Graces guidence and the rents’ taste buds! We made pumpkin (my own of course) and ricotta ravioli with a spicy arrabata sauce and sundried tomato, rosemary and Himalayan rock salt foccacia bread. The verdict? It was all amazing……you couldn’t even tell it was gluten free!! We did have a lot of trouble making the pasta as it was so delicate which resulted in odd irregular shapes but we decided we were showing our variety! The sauce was a slight disaster. As yummy as it was I made the mistake of adding about 20 times the amount of chilli flakes required! However Ash and Daddy L powered through it like real men! Lucky we had dessert to cool the gastroisestinal tract down with poached pears incased with chocolate puff pastry spirals. Although I only had a few mouthfulls of each it felt great to be eating the same as everyone else…….and it was great fun to make! Unfortunately in all the excitement we forgot to get pictures of the final product……only managed one of dessert. Guess that’s my excuse to make it again…….theres that ever existing silver lining 😊 happy bonfire weekend everyone xxxxxx

Baking, carving, Halloween shenanigans!

Now for those of you that know me well will know that I LOVE Halloween and everything that comes with it. The pumpkins (both carving and eating), the delicious treats that resemble all things gross and oozey, the horror films that leaves you with enough adrenaline in your veins to resuscitate an elephant, and most of all………..the dressing up! I Love fancy dress and what better time to go all out than combine it with the scandalous spookyness of Halloween??

This year has been super exciting for me because last year I planted some pumpkin seeds from a 50p pumpkin in my garden. After everyone mocking me saying they wouldn’t grow…….they didn’t just grow they flourished into golden beauties shining brighter than the sun. So after already having reaped the benefits of my fruitful home harvest, by testing out those pert little pumpkins in some biscuits I was feeling chuffed. Even more so when Ash asked me to help him cook up some tantalising treats for him to take to work on Halloween. I was in my element stooped over the bubbling mixtures.

Boil boil toil and trouble 

In the end we had……..

Pumpkin passion cupcakes decorated as pumpkins and ghosts…..

And chocolate slim tarts……

After all this excitement I couldn’t help but feel a little dagger of nostalgia seeing all my friends uploading their petrifying pictures on social media has they headed off to party the night away. This was the second year in a row to miss because of PAS.

This mood could not continue…….so how do me and grace cheer ourselves up?? Pumpkin carving of course!!! It’s graces first Halloween…..i had to show her what it was all about! So me and Ash set to work on   my  pumpkins (sorry I totally mean  ours ) we carved them in front of a spooky film of course!

As it was actually Halloween yesterday I still wasn’t content with my lack of scary celebrations. So me and Ash (and good old Norman) went to see Happy Death Day at the cinema. He came to pick me up and I creaked open the door imitating uncle Fester “you raaaaannnngggggg” whilst revealing my new appearance. Ok so it was only the cinema and it was dark but at least Grace got to see what Halloween is about and I could go out using my walking stick and Norman to my advantage……i was supposed to look scary and grotesquely gruesome……no one knew I looked this gross on a daily basis. Always a silver spooky lining 😉

Happy Halloween!!!!!

Sorry it’s been a while……

It’s been a bit of a struggle the last couple of weeks. Whilst everyone is going on holiday, progressing in their careers and going out socialising I have been on this journey that feels like an uphill treadmill which no garuntee of recovery at the end. Stuck in a bubble of pills, hospitals and the sense of living in quicksand, going backwards rather than forwards. 

However, Grace convinced of this……

• I can ride horses…..
• Which means I can also ride unicorns…
• Unicorns have wings so they can fly high into the sky…..
• Skies have clouds……
• And every cloud has a silver lining!!

I’m not on a treadmill…….. I’m on a cloud!!

So what’s my silver lining??

My cloud is practically silver……

• I have the most amazing support network of friends and family.
• I have 2 beautiful fur babies. (Spirit my full sized unicorn without the horn and Chip my gorgeous grey)
• I am fortunate enough to live in a country where there is not only is the healthcare top quality…..but it is free!
• I have been lucky enough to experience some of the things life has to offer; horse riding, going to school, going out and dancing until sunrise.

Did I take all this for granted? YES!!!! It’s too easy to look around and compare ourselves to others and focus on what we haven’t got instead of what we have got. 

So with that in mind I decided to start getting focused again on my road ahead wherever that made lead me. So I started to have a little sort out of my room now that I am managing the stairs most days. I gained more than more space….  I gained some bruises after stupidly falling backwards trying to put something at the top of my wardrobe! Grace was far from impressed!

But this didn’t stop me and Norman from having a little walk round the farm on Spirit with Mumma L and Chip! After all……. I have more padding after spending 16 weeks with Norman. 2 stone more padding to be precise!

In the spirit of appreciating what we do Have, me and Mumma L decided to throw a little tea party! So whilst Mumma L made the sandwiches, ginger topped scone and dug out her finest China. Me and Grace were busy making raspberry tarts with homemade jam, coconut macaroons, chocolate coated marshmallows and pumpkin biscuits with my pumpkin from the garden! 

We had the most amazing afternoon and our cheeks were aching from all the laughing. 

Life is good 😊

Wonderful weekend

Yesterday started out fabulously with a cheeky little trip to the Food &  Craft fair at Cressing Temple Barns with fantastic friends! There  were so many an amazing treats and goodies as well as some beautiful birds of prey. Unfortunately there wasn’t any Fresubin based yumminess for Norman, but we did find some muttilitious muffins for Chip, Willow (Ash’s pooch) and Tilly (Holly and Russell’s canine). 

On the theme of hounds……..we went over to Holly and Russell’s that evening for a movie night! 

• Pizza: check (although not for me and Norm!) 
• Side splitting comedy: check. 
• Pjs: ONE GREAT GIANT CHECK!!!

After all that excitement I was exhausted……..so who spent the night with me……none other than party pooper Parasitic Pain!!!! Cheers PAS! 

But there was no time to lay around being miserable because it was pumpkin picking time! The closer we got to those brilliantly bright pumpkin presents the more excited I became! In fact……the pooches were feeling pretty waggly too!

We chopped one up in what could only resemble a prize producing pumpkin parlour!! 4 tubs!!!! The freezer is stocked! Don’t worry……..Im saving the other 3 for crazy cooky carving At Halloween! 

Now it was Sunday afternoon……that can only mean one thing…….Spirit time!!!! We went for the most wonderful walk around the farm. The sun was shining, the air was warm with a crisp undertone and we were ambling through the countryside with the birds signing in our ears. Nothing could spoil this picturesque perfectness……….until we hear rustling…….and who appears from the brambles? Willow!!! Although it wasn’t the Willow we saw disappear amongst  the thorny BlackBerry producing foliage. It was as if she had met some kind of hungry swamp creature that had coated her in thick black sludge that resembled black treacle with the aroma of wildlife sewage! Literally in a matter of seconds she had turned from the cuddly cute faced pooch we all know and love into a swamp creature from Scooby Doo! 

Thankfully, after some vigouros scrubbing with Teatree and Mint shampoo the beautiful spaniel reappeared. Transformed like a butterfly emerging from a cocoon!

Then we come home to mum’s homemade BlackBerry and Apple gluten free crumble. All in all……a pretty wonderful weekend!. Hopefully my PAS pals will leave me be tonight as I’ve got my flu jab in the morning. Need to keep my strength up!

I hope you’ve all had as giggly waggly weekend too…….or at least found something to make you put a smile on your face and give you that warm glow inside.

Xxxx

Cake and unicorns

Tuesday I felt awful and slept most of the day which did me good and set me up for a fabulous magical evening celebrating the birthday of our little Red mermaid! My uni friends are among the most thoughtful, loving, supporting and selfless humans to have ever walked this earth. 

We were all so excited to watch red open her presents from us. …….. we turned her into a real life mermaid with a map to cushion her little Red head on when she is tired from being so beautiful all day.

Then we had the Cake!!! Canada inspired by little Red Mermaid’s love of Canada and all things maple related. This was my first attempt at this type of Cake, and whilst it was far from perfect, little Red mermaid was impressed! 

Yesterday was a tough day due to Parasitic Pain’s presence and a tough letter about my future from the hospital. But I promised Ash I would go to Freeport with him for the student night. He wanted a new pair of Levi’s and to check out some banging Barbour bargains!!! Grace told me to pull myself together whilst Mumma L ran me a nice hot bubble bath with candles…….at least now I could cover up the fact my face was wet with troublesome tears! 

So off we headed and met Ash’s brother and sister in laws. Well ……..due to my expanding waistline……my size double 0 pair of Levi’s didn’t hang off me anymore……in fact not only did I have to squeeze my legs into them like I was stuffing a sausage, but if I dared to sit down I felt like they would pop like champagne bottle without the lovely fizzy stuff inside. So of course I needed a new pair!!! 

After that we grabbed us a couple of banging Barbour bargains. It’s nice to be able to go into shops and actually try on clothes without them looking like they are hanging off a coat hanger due to my body having about as many curves as a flight runway!

Then I had the most amazing surprise from Holly (sister inlaw)……..a unicorn onesie!!!!

And then when I thought it couldn’t get any better……..whilst I was writing this blog my dear lovely Laura surprised me at the door with this beaut……..

Life is like a box of chocolates…..you just don’t know what you’re going to get! 

Some are bumpy and some are oozing with sweet magic…….youve just got to savour your favourite ones.