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.

Why?

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.

Or……

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 😘❤

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.

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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?

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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!

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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!

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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.

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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.

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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.

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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!

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There were even 4 beautiful Queens ……..

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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.

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

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Occupational Therapy = Crochet Chaos!

Today started off with a trip to my second home…….the hospital! Although it was a relatively routine appointment I felt Agro Anxieties presence breathing down my neck. This made it easier for Shakey McShake Face to take hold. Luckily I had the help of Mumma L and William the Wheelchair who were only too happy to oblige despite Mumma L passing comments about how I was now a “lump” to try and push. The cheek! Let’s see who will be pushing her around in a wheelchair when she’s old!

So we made it to The Pain Clinic and were called in bang on time. I wanted Mumma L by my side to help the sudden stammer that seems to appear when Agro Anxiety is around. We got comfortable in the room, me in a great big armchair, and we just get started when Mumma L decides to have a coughing fit. As her face gets redder and her ability to speak quickly diminishes she excuses herself using gestures that we can only assume mean she is going to get water and sit outside. Agro Anxiety loved this! My heart racing (despite the beta-blockers best efforts), my skin leaking water and my chest feeling tight, I almost held my breath at the next question. The guy was great and just carried on ignoring my wriggling around in that great big armchair. He stated how well I was doing and how once again the professionals had discussed how amazed they were that “I survived” and he felt “privileged to be a part of that team”. He went on to discuss how my occupational health was fitting into my life and that I am ready to move on to a more structured plan with him.

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My occupational therapy has mostly consisted of riding Spirit round the farm (just plodding!), baking and learning how to crochet. I have thoroughly enjoyed these activities apart from crochet! This has caused me so much frustration. I started out with the naïve excitement that I would pick it up and in no time I would have a whole collection of crochet items. Mumma L printed me off a design that was labelled “beginners” and “Approx time: 1 hour”. About 17 hours later, 7 balls of wool and countless amount of stitches unpicked I had not produced a single thing! I was at a loss! I was even dreaming about crochet!

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Later on in my session he explained that anxiety is like a bee. It produces something for us (bees provide us with the honey that provides us with a multitude of uses from porridge to leg ulcers and anxiety gives us a protective factor).  However they both have the potential to cause us pain (bees have a bad ass sting whilst anxiety has the power to make you feel like death is immanent!). But they generally only do this when provoked, when left alone they are harmless. So he suggested that just by saying “I feel anxious” we start the process of that anxiety taking control due to the brain’s automatic response. If we say “I feel oranges” then we feel quite pleasant………..it actually worked!

 

There were more positives. I have the best BF Mumma (Ash’s mum) there is and she came to my rescue Sunday night! I felt terrible in that she spent her Sunday evening spending 4 hours trying to teach me how to crochet this seemingly impossible pattern and missed her beloved “Strictly”. She is more than brilliant! So I took home a mini version that she made to guide me and made a bigger version……..by bigger I mean the holes are so big they could make a mole envious. But I did it! So then I made another one………but I don’t like the wool! So I have ordered some more and will hope that all my acquired crochet knowledge doesn’t disappear whilst I eagerly wait for the delivery!

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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??