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!

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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!

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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!

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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!

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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.

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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 . . . . .

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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!

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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!

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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!

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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!!!!!

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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!

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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!

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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.

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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

 

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!

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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!

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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.

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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!

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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!

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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!

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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!

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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!

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A reason to be upset or an amazing opportunity?

After 3 days of Parasitic Pain plaguing my body I finally started to feel a bit better yesterday. This sense of cautious elation was quickly obliterated when my phone rang.

It was a doctor from St Bartholomew’s Hospital in London.

He stated that I needed to come in to be admitted. It will happen on Monday. That gives me 5 days before I feel like a lab rat.

Due to the very rare and complex nature of PAS not an awful lot is known about it. This was exacerbated by my severe weightloss leading to the events of the summer. There is also limited knowledge and literature on refeeding syndrome which was only discovered after World War 2 when Jews from concentration camps were released and began dying when they started eating again.

Although the main crippling symptoms of refeeding syndrome have thankfully seized, my bloods are still unstable which could be indicative of a malabsorption problem. The combination of this has left any poor healthcare professional that crosses my path scratching their head. I knew my Professor wanted to carry out some more investigations but I put that to the back of my mind and carried on pottering around and attending my local hospital and doctors appointments.

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My best friend

Now it is time to face it. What is “it”? Well, I am unsure as to what “it” is. The doctor on the phone was lovely and kind and reassuring but he could not tell me what tests they were planning to carry out or how long I would be staying for. I know my Professor wants biopsies from various parts of my digestive system as he stated this from my last visit with him, but other than that I am in the dark. The doctor on the phone just stated that I should “bring at least a few days worth of clothes and medication and we will go from there” and “Monday you can eat and drink because it will just be a settling in day”. “settling in day”???? I’m not moving house! I understand that results of some tests will determine the need for further tests which cannot be predicted but the thought terrifies me. I don’t want to go through the pain, anxiety and loss of control that hospital brings. Especially so far away. that is without all of the worry as to what they may or may not find!

Of course Grace the unicorn will be with me. And she asked me to see this in a different light………

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Time to smile

 

I am under the lead endocrine Professor who is also the clinical advisor for ADSHG who set the UK National guidelines regarding Addison’s Disease. I am going onto a tiny specialist unit where people with rare complex endocrine disorders come from all over Europe. This bed alone will be costing a gulp inducing amount per night, and not only am I going in on the first day to “settle in” and be prepped on a loose plan for my stay, but I am receiving all of this world class treatment for FREE!! This is thanks to the amazing NHS. There is no way I could receive this level of care without the NHS and in all honesty I would not be here.

So I am seeing this as an amazing opportunity and I feel extremely lucky and privileged to be in the position that I am. It doesn’t stop the butterflies and tears everytime I think about next week as I don’t think hospital tests get any easier nor do you “get used to it”. You just learn how to keep Agro Anxiety hidden from view. I am not strong or brave as I did not choose to be born with PAS. I am terrified. I want to run away and hide. But life is like a game of poker and I have my poker face on. I am merely playing the cards I was dealt. I may not have the best hand but I will put on my best poker face. Anyway, this is the perfect chance to practise my CBT………. I’m not going into hospital………I’m going to oranges! Now that doesn’t sound so scary!

So between now and Monday me and Grace will focus on having as much fun as Ppain and Ffatuge allow me to before we face the oranges!

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My dog Chip . . . .I’m going to play it as cool as her

Pushing comfort zones to the “Maxarena”!

Saturday was a big day for me! I have only just pulled my brain back into a reasonable state of focus……..my body is still catching up. But it was worth it because Saturday night marked a big step for me both physically and emotionally. I went to a dinner dance in aid of the British Red Cross who have been one of the many hands that have aided me in my recovery. It was held at the local cricket club and was all finished at midnight but this was the equivalent of an exclusive A list event for me; worlds apart from my sheltered little life.

So I turned into a typical girl in the run up to this event. After my usual early start for sorting out Norman, my feed and medication, I hiked up the stairs with the grace of sea lion to submerge myself in the bath. I washed my hair and applied a hair mask, I successfully completed a facemask which Norman usually has some objection to, and Shakey McShakeface even left me alone to exfoliate and shave the thin wisps of hair on my body that I do have.  Since being unwell I have shed my hair on my legs and body to be replaced by the odd fur-like strand here and there, so I really don’t need to shave my legs but I was wearing a dress……. and as a woman it made me feel better to pretend I needed to, almost like a pre-teen desperate to do all the things your friends are doing!

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So after all this self grooming was complete it was time for phase 2. I covered myself with a light tanning mousse with a hint of shimmer in an effort to make me sparkle and take the attention away from Norman! I rough dried my hair and put some setting lotion in before plaiting it into 2 French plaits.

Now it was time for phase 3. REST! Now whilst I appreciate this is not a normal part of one’s routine, it has forced itself upon me. Anyway, I couldn’t do much else as I had to let my gorgeous glowing tan develop and for my hair to set into wonderful waves! I also had to save my spoons. For those of you that don’t know what the spoon theory is I will give a brief summary.

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We all start our day with 12 spoons (just an example). We all spend our spoons differently throughout the day. Getting up and dressed in the morning may only cost you 1 spoon whereas it may cost me 4. This means I have less spoons to spend on the rest of the day. So if I have something planned later on then I need to save my spoons by doing less throughout the day. The cost of spoons also varies each day. One day it may cost me 3 spoons to walk to the end of the garden and another day it may cost me 9. You healthy cutlery filled people don’t really need to worry about this theory because your draws are full of spoons, but it’s a nice way to help explain the pacing of life for anyone with fatigue.

Spoon theory in mind I desperately tried to sleep. I kept my eyes closed and counted sheep with little success. I was stuck in that place of half consciousness where you feel you teetering between sleep and leaping up in frustration at the fact you are not asleep. This continued until I decided it wasn’t too early to start getting ready if I did it v.e.r.y.s.l.o.w.l.y. Once I was all dolled up the doorbell rung  and I thought my stomach had leapt into my mouth with excitement and anticipation. After all the lack of slumber due to excitement I suddenly wanted to jump back into my PJs and hide under the safety of my duvet with Grace.

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But amazing Ash was there on the other side of the door and my whole body went warm and gooey when I saw that big welcoming smile beneath that bushy beard. What if he was embarrassed taking me out like this when he was looking marvellous all smart and suited? After all, Norman isn’t exactly the most glamorous addition to an outfit. As these thoughts raised through my mind Ash said “you look beautiful”. And all of a sudden it didn’t matter what anyone else thought because if Ash thought that I looked beautiful then nothing else mattered.

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I needn’t have worried as everyone was super friendly and I even bumped into some old friends! I picked at some food, joined in with the raffle, “ooooed” and “aaahhhhed” at the magician and even did a cheeky Macarena!!

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I felt elated and proud. Proud of how far I have come. And even more proud to be on the arm of the most amazing man that I could ever wish for.

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Yesterday I woke up with a “spoonover”. It’s my version of a hangover. Most people drink too much; I went into my “spoon-overdraft” which meant I have spent 2 days recovering paying my debt back. Parasitic Pain, Naff off Nausea and Shakey McShakeface have had a whale of a time! However they didn’t stop 2 old friends from popping over today with a beautiful Christmas rose plant and plenty of giggles.

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Am I also sitting here writing this next to the best brother in the world who has come to visit. My whole body is hurting but I can sit here and smile thinking humbly about the things I have spent my spoons on over the weekend. Isn’t that what life is about?

Keep on with the force don’t stop, Don’t stop ’til you get enough……

 

‘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??

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!!!!!