Friday, 31 August 2018

One Second Every Day: August - Week 4


  • Monday 20th August - Went to group therapy but got sent home just in case I do have a have a tummy bug so I've got to stay off for 48hrs. I got home an rested and also did some PostCrossing and made a few medical related phone calls. I also started a new series on Netflix called 'Stranger Things' which so far is pretty good. Dad and I also watched a documentary together. Time seemed to fly by today.
  • Tuesday 21st August - Still on sick leave. Dad did some private tuition this morning and I had a nice chat with the mum. Currently just watching more Stranger Things and hoping to have the energy to do some tidying in my room and write some more letters today. Feeling much better today than I have don the past few days.
  • Wednesday 22nd August - Today was a day of little victories, like getting out of bed, getting something to eat, getting showered and washing my hair and pushing through the pain and fatigue and other symptoms. In the evening Rik came round and we watched a film and drank tea. I'm enjoying Flops company. He enjoyed munching on a carrot I gave to him today and its very calming stroking him. I think combined with my usual symptoms and my tummy bug M.E. has really knocked it out of me today. I supposed to be going to group therapy tomorrow so I'm just hoping I have the energy to go. 
  • Thursday 23rd August - First day back at group therapy after my time off with a tummy bug. It was a difficult day at the psychologist there it was her last day and I got on really well with her so I was sad to see her go. I got home and crashed out and my usual daily headache started to creep into a migraine so I took some magic Sumatriptan and put on my sunglasses and managed to watch a film with Dad and Mandy. I was really struggling to get off to sleep so I put Harry Potter on my TV as a distraction to listen to.
  • Friday 24th August - Chilled out day. Woke up to make a phone call at 8.30am and then went back to bed. Had a chilled out day. In the evening I had a few tonic-clonic seizures and was in spasm for over and hour afterwards. Managed to have my tea without throwing it at the wall (yes I have done that in the past!) and after tea Dad, Mandy and I had another film night.
  • Saturday 25th August - Accidentally slept in until 12pm, oops! Got up and breakfasted and I've just had a bath and got dressed. Need to get myself ready and my packed lunch made by 4.30pm for when Dad and Mandy get home (the've gone to look at a car) and then this evening Dad and I are going to Gunby Hall to watch an open air theatre production of Alice's Adventures in Wonderland. Had a lovely time with Dad at Gunby Hall, and I'm now in bed watching The Great British Bake Off (I was a late started to watching the GBBO so was delighted when Netflix put on the first 7 series) with my TENS machine on my hips which have been hurting me all afternoon and is keeping me awake. Hopefully it will ease the pain so I can go to bed, (especially as I want to avoid taking medication straight away).
  • Sunday 26th August - Got up on time today, yay! Rik came round for a few hours and we watched a film and I designed him some logos and we drank far too much tea. Watched some TV, the time flew by and tidying up my room got forgotten about. I did mange to get two replies to letters done. I hope I have in my letter rack all the letters I have to reply to as I have a feeling there's some missing maybe? Had a long seizure and I should really have gone to bed in hindsight but ended up watching a film with Dad and Mandy. Tomorrows' plan is to do some blogging, doing some tidying in my bedroom as I really don't like how messy it has gotten; even if I do it in small manageable chucks and pace myself I can't use illness as an excuse, order a few things and choose which distance learning course I'd like to do next. So lets see how that plan works out!...

Gratitude List:
  • My Dad for looking after me
  • Friends, tea and films
  • Being able to leave the house
  • Little victories

Thursday, 30 August 2018

August Birchbox Review


This month's Birchbox was designed by Etsy seller Nikki Strange. This month's birch box design came as a unique design and there was a chance of receiving 1 of 10 designs made by Etsy sellers and the theme was "Live a life beautiful".

Inside I received...

Eye Shadow Crayon in 'Fetch' by Dirty Little Secrets
This product I got to choose the shade and I've tried this product out and I love it! The shade is beautiful subtle; it's very neutral with a little shimmer. It's very easy to put on as not brushes are needed and it has a lovely creamy texture. Just scribble a bit onto your eyelids and blend in with you finger and off you go! It can also work as a base coat of powder eye shadows and it can also be used as a highlighter so two-in-one - fantastic! And it's lasts all day but it easy to take off at the end of the day. I got this as a full size product and it's a decent size and a little goes a long way so it's going to keep me going for a while. The RRP of this product is £10.50.

CLĒ Cosmetics Melting Lip Powder in Red Cherry
This little sample, tough it may a sample a little goes a long way. It can be used as either a lip colour or a cheek tint and goes on as a lovely matte finish and as a bonus it's smudge proof so is long lasting throughout the day. The RRP of the full size product is £15

Dr Botanicals Pomegranate Regenerating Sleeping Mask
This product I have tried out. Just cleans your face before bed and apply a small out and work into your skin and you wake up with lovely refreshed skin. It smalls amazing too. "The antioxidants [in this product] will rejuvenate tired skin so when you'll wake to a glow, hydrated complexion". The RRP of this product is £14.90

ModelCo®  Eye Define Crayon Liner
This was another full size product which I haven't used yet as I'm wanting to use up my current eye crayon. It's a twist-up crayon, so no need for sharpeners (yay!)  and lasts all day, perfect! The RRP of this product is £11

Bumble and bumble. Don't Blow It Hair Styler
This was a sample size and not one I've used yet but I love Bumble and bumble's other products from previous purchase's and Birchbox's but I'm eager to try it out as I often don't blow dry it's designed for towel-dried hair which isn't going to be blow dried as I often don't bother to blow dry my hair. The product uses "plant based conditioners to enhance you hair's natural texture and shine". The RRP of the full size product is £24.

All products can be bought in full size from the Birchbox Shop and if you wish to subscribe to Birchbox follow this link https://www.birchbox.co.uk/invite/pm6lh to earn £5 to spend in the Birchbox shop and each month new subscribers also receive a free gift. Birchbox costs £12.95 each month including P&P and there are different subscribing options and you can cancel anytime.

Monday, 27 August 2018

Guest Post by Christina for Gastroparesis Awareness Month

It took me seven years to be diagnosed with Gastroparesis. I went from doctor to doctor with no answer other than “you’re just stressed”. Doctors wouldn’t listen to the fact that I was in pain. I was refused testing that I desperately needed due to doctors who didn’t want to do their job. All the while I’m unable to eat food without throwing up, loosing weight, and being in an immense amount of pain. 
Unfortunately, more and more people are going undiagnosed with this horrible disease due to the rarity of it. It’s misunderstood and talked about very little. 
Since August is Gastroparesis Awareness Month, I want to take the time to spread awareness and information about how this disease effects people. 

Gastroparesis is delayed gastric emptying due to a partially paralyzed stomach. The stomach pushes food into the small intestines to move food through the digestive tract. For people with Gastroparesis, our stomachs have a hard time doing that, therefore food stays undigested in our stomach for long periods of time, causing malnutrition, pain, nausea, and vomiting. 
Gastroparesis is diagnosed through a Gastric Emptying Scan (GES). This involves the patient eating food that contains a small amount of radioactive material so that a nuclear medicine scanner can watch how fast food leaves the stomach. 
Liquid digests better than solids. This is why I had to move to a liquid diet in order to get the calories I need, and even then, I’m still struggling. It’s like playing Russian Roulette with every meal. Some days food stays down just fine, and others days, not so much. 
It’s also very common for people with Dysautonomia (like myself) to have Gastroparesis since the autonomic nervous system controls digestion. 
And yes, I’m good at hiding it. As are most of us living with chronic illness. We are good at pretending everything is ok when inside we are struggling. Most people don’t even know there is something wrong.

We try our best to put on a brave face and act as normal as we can to get through the day. It’s a coping mechanism for a lot of us. 

If you are interested in finding out more about Gastroparesis, go check out www.aboutgastroparesis.org. They have a lot of helpful information for patients, or people who are curious as to what Gastroparesis is. 

Friday, 24 August 2018

GUEST POST by Cheyenne for Gastroparesis Awareness Month 'Loving My Body Despite Gastroparesis'

Loving My Body Despite Gastroparesis

“Let’s do a gastric emptying scan,” said the gastroenterologist. I was only thirteen at the time. We were on a frantic search to determine the malady at the root of my stomach woes. Relentless nausea, wretching, and the oh so unglamorous constipation—this was the umpteenth medical test, and every single one before had led to more questions than answers. I thought the idea of a gastric emptying scan to be kind of silly. What would eating radioactive eggs tell us? I can assure you I did not leave the hospital that day singing a peppy rendition of the Imagine Dragons hit titled Radioactive, but between dry heaves, I really did “feel it in my bones.”

Ironically, the gastric emptying scan I had deemed irrelevant was far from it. The results were indicative of a condition known as Gastroparesis. My stomach is partially paralyzed, digesting food and its natural acid secretions too slowly. What little I choked down basically sat there to rot.

Life changed after my diagnosis of Gastroparesis. Gazing into the mirror, I did not recognize the reflection staring back at me. It was as if I was seeing myself for the very first time. I could no longer maintain a convincing healthy façade. Foundation did not conceal the dark circles under my eyes from malnutrition. Stylish, baggy clothes did not hide my emaciated frame as I struggled to gain weight. Laparoscopic scars dotted my midsection, while feeding tubes were plastered to my face and abdomen.

Suddenly, all the changes occurring both inside and outside of my body finally had a name, as did each of my insecurities. I was vulnerable. Grabbing what little flesh I had, the nail marks embedded into my skin symbolized my contempt. I had a new relationship with this earthly vessel of mine, and it was not necessarily that of positivity.

Like most teenage girls, I hated my body. Still, the hatred I harbored was deeper than “does this outfit make my butt look big” or the anxiety over those extra cheese fries causing an unsightly breakout. Instead, it was fueled by the deep yearnings for a functioning body—one that could easily gain a few pounds to disguise my sickly appearance or one that was able to digest a plate full of ooey gooey delicacies. However, I had Gastroparesis. That was never going to be me.

Learning to accept my body in the stages of awkward adolescence was an arduous process. I went through periods of resenting my peers. I was envious of the bodies they had, which digest food properly and lack painful medical devices. In a way, I was jealous of their ignorance. Many had the audacity to remark, “I wish I had what you had so I could lose weight,” completely forgetting that their muscular build and the ability to shovel snacks in their mouth without hesitation would be things of the past if they had Gastroparesis too.

As I approached young adulthood, I had to alter my perspective. Wallowing in the hypothetical out of order sign on my gastrointestinal tract would not bring me satisfaction. I later realized that I have to focus on what I can do rather than what I cannot do.


Perhaps I cannot eat, but I can smile. I can laugh. I can love. I can choose to be joyful always. It is because of Gastroparesis that I once hated my body. Yet, it is also because of Gastroparesis that I found solace and appreciation in all my body can do.

Cheyanne's blog can be found at www.hospitalprincess.com




Thursday, 23 August 2018

Between a Rock and a Hard Place

In the year I've been at group therapy (and I still have enough 11 month to go) my symptoms, especially my various types of pain and especially my fatigue have gotten worse because I have to put it aside to go to group even when when my body is screaming at me to stay home/in bed and rest and the staff there I feel don't understand or what to listen to my physical health stuff; they want me to leave it at the door and focus on my mental health (despite my physical health having a great impact on my mental health) and they blame my fatigue on my medication which is keeping me afloat and I'm saying over and over again "it's not my my meds, it's my M.E." [that's making me so tired] but they don't want to listen and I'm left feeling voiceless and wishing I wasn't physically sick. 

Yesterday I called up my contact for the Complex Care Team, she's just the admin but was very understanding when I explained my predicament with the group therapy staff not understanding or listening to me about my physical health and them wanting to reduce my medication (even though they're not Drs). Hopefully soon I'll be assigned a key worker in in team so I can have someone to talk to and help me unmuddle things (and have a big MDT (Multi Disciplinary Team) meeting with my care co-ordinator from the group therapy to explain and discuss my needs, physical and emotional) as I'm just declining and at the moment I'm wondering if I can continue with group therapy but if I do I will lose all access to mental health care and I can't do that so I'm in a rock and a hard place and my body is failing me.

Before I started the group therapy programme I was able to pace myself throughout the day. On my bad days I was able to stay in bed and rest and do what I can and I was able to spread my energy out thought out the day and get up when my body was ready and take rest/nap breaks when needed and do what needed to be done when I had full capability. Now jobs get left - my bedroom is a mess as I don't have the energy because my days off from group therapy are spent resting because I'm so drained and when I get home I just crash for the rest of the evening until I drag myself to bed because I'm forced to get up earlier than my body likes and leave the house and sit through groups and fight the fatigue and get moaned at because I'm nodding/switched off and my medication is being blamed when there should be more understanding of my M.E. and FND.

The group therapy staff are also putting stoppers in the way to me getting to rehab in Leeds which really angered me when they brought it up in my last CPA (Care Plan Assessment) and they want to speak with Professor Edwards (when I don't know what they're saying to him) about my mental health and how that might make my ineligible for the rehab in Leeds at this present time as they don't think I should be going because of the state of my mental health even though like I've said a big chunk of that is caused by my physical health, which just sucked away all my hope of getting some help for my FND and M.E. because I've been waiting for this rehab ever since I first saw Professor Edwards last year. I think I need to find out and request that I be kept in the loop with all conversations with Professor Edwards and the Leeds rehab centre to ensure the correct information is getting passed on?

I just really don't know what to do. I might have to take some timeout of group therapy if this hypermobility sessions come up so that might give me a welcome break to at least try and look after my body in-between travelling to UCLH.

I think when I go to group therapy later on today (it's currently 5.40am and I can't sleep) I'm going to have a conversation with my care co-ordinator about everything. For now, I need to try and get some sleep.

Tuesday, 21 August 2018

One Second Every Day: August - Week 3


  • Monday 13th August - Last day in Goathland. Typed some letters in the morning then ensured I had packed everything. We said our goodbyes to my Auntie and Uncle and we set off. On the way out of Goathland we stopped off at Goathland train station where they filmed the scenes for Hogmeade Station in the Harry Potter films.
  • Tuesday 14th August - Not much going on today. Had an early night with some Netflix in bed and a cup of tea.
  • Wednesday 15th August - Had a fairly chilled out day. Had a lay in ad then got ready and watched some TV. Dad and I finished off watching a series called Hidden. Then at 2.45 my Bluebird nurse came and picked 
  • Thursday 16th August - Challenging day at group therapy and fatigue was flaring in the afternoon so when I got home I just crashed.  
  • Friday 17th August - Had an lay in this morning though I did get up to make a phone call at 8.30am then went back to bed. Symptoms have been flaring so had a rest day apart form my hairdresser coming round in the afternoon.
  • Saturday 18th August - Had an accidentally in this morning but I'm guessing that my body needed the rest. I got up and ready and watched some Netflix. I've just finished cleaning Flop's cage and he's now happy munching grass in his outdoor run and I've decided to spend a bit of time out in the garden making the most of the summer whilst it's still here. I got tired after a while and just rested on the sofa the rest of the afternoon. The evening was a blur of seizures, muscles spasms and muscle rigidity and I didn't get get off to sleep until the early hours.
  • Sunday 19th August  - Woke up at the normal time for church to see how I felt but I felt so ill and so was going to lay in but decided seems I was awake that I'd drag myself downstairs. I think I also had a tummy bug (maybe?) and felt so sick and exhausted and weak. Rik (Spen) was going to come round and I was going to call it off but I'd perked up and in the afternoon we drank tea and watched a film for a couple of hours. I tried to not over rest so finished off typing up some letters and printed them off and made three letters up ready to post and paced between that and watching TV and also tidying up my room. My pain, especially in my hip is flaring so I'm just resting and going to watch an episode of Desperate Housewives with Mandy hopefully before bed.

    Gratitude list...

  • Living is such a beautiful country
  • Friends
  • Rest days
  • Cuddles with Flop
  • My Dad who does so much for me
  • Desperate Housewives sessions with Mandy 

Monday, 20 August 2018

GUEST POST by Christina for Gastroparesis Awareness Month

I was recently diagnosed with Gastroparesis on the 13th June 2018 but I had been having stomach issues for a while.

When I was a freshman in 2014 my stomach got incredibly bloated , and I'm pretty skinny so all of a sudden seeing my stomach look like a ballon was alarming. I went to the ER after the pain became terrible and I almost failed in school, but they didn't do much. They just asked what do I eat most of the time and all they did was blame it on the food. 

All of this went dormant until half a year ago where the nausea and vomiting became extreme and I lost weight which scared my parents. 

Since I already have chronic pain and other illnesses to begin with it wasn't really all that important to me because all of my doctors where more invested in trying to find a way to lessen my pain.

Recently I've been having more bad days. I feel as if I can;t stand up and my eyes can barely stay open no matter how much I sleep and my body just feels weak all the time and I hate it.

Friday, 17 August 2018

One Second Every Day: August - Week 2


  • Monday 6th August - Difficult and challenging day; one where I felt "sick and tired of being sick and tired" and frustrated at being chronically ill. Felt quite low this evening too but tried to "just keep swimming".
  • Tuesday 7th August - Another not-so-interesting day.
  • Wednesday 8th August - Didn't have my carers today as wanted to rest. In the evening Spen and I had a take out pizza and went to our favourite spot and then went for a drive.
  • Thursday 9th August - Group therapy in the day. Had a Desperate Housewives fest with Mandy in the evening which was nice
  • Friday 10th August - Chilled out day. Just rested and recharged my batteries. Watched some Netflix and started on replying to my pen pals.
  • Saturday 11th August - Up early this morning to drive to Goathland to stay at my Aunt and Uncle's for a few days. I loved driving over the moors. We got there around lunch time. In the afternoon we went to the annual village flower, fruit and handicraft completion. I also went into some of the village shops to stock up on postcards for PostCrossing as a lot of members ask for tourist/local picture postcards. I was struggling a bit pain wise so when we go back I took some pain relief and snuggled up on the sofa and watched some Netflix and then had an early night.
  • Sunday 12th August - Slept really well as the bed was super comfy and it was novel to have a double bed all to myself. I got up and had my breakfast and watched some Netflix then I had a nice hot shower as the temperature has dropped and with my autonomic issues I struggle to keep my body temperature up so I'm forever cold. I then brought down some letters and started typing up some replies. In the afternoon Dad and I went to the North York Moors Centre and I bought some more postcards and we looked around the art gallery which had a display of artwork based on local tales, myths and folklore. We then sat outside and had coffee and cake. When we got back I had a nap and in the evening the four of us played a board game. 



Gratitude list...
  • Family and friends
  • Visiting beautiful places
  • Chill out days


One Second Every Day: August - Week 1


  • Wednesday 1st August - Bit of a dull day; not much going on. Received a lovely letter from my pen pal Ella.
  • Thursday 2nd August - Didn't sleep well so had a tiring day had an hour long seizure at group therapy so Dad had to come and help me out and then take me home and I slept most of the evening.
  • Friday 3rd August - Rested most of the day, tired from yesterday's seizures. Just chilled watching Netflix and got som pst from one of my pen pals Eleanor.
  • Saturday 4th August - So such an early start to the day despite the fact I'm heading off to London. I had to be ready for 11am for patient transport to pick me up so I had plenty of time to ensure everything was in my bag, get dressed, put my make-up on etc. The journey there was pretty uneventful and we had a pit stop at Peterborough Services, the only hiccup was the struggle to find the hospital - we could see it over the road but didn't know how to get over to it and the it was a case of finding where ambulances could park and then it was a case of finding the right building and clinic, but with a but of guess work we finally got there. My appointment went really well. (see blog post). On the way home I had a couple of seizures and gain we stopped of at Peterborough Services. My new headphones came in perfectly for the journey there and back and I just sat and chilled listening to my iPod which help distract me from the nausea.
  • Sunday 5th August - Went to church this morning and then after church I went out with Spen for a drive and we stopped off at our spot to sit in the sunshine and I tried to even up my tan as the arm I burnt is now tanned but the arm that didn't get burnt was still pale. 



Gratitude List...
  • Letters from pen pals
  • My Dad
  • Patient Transport
  • The NHS and having specialists caring for me
  • My faith
  • Friends
  • Sunshine


Guest Post by Emma for Gastroparesis Awareness Month

Gastroparesis sucks. 

Due to Gastroparesis, I can’t eat. Imagine that, not being able to eat your favourite food or eat cake on your birthday! 

My stomach is paralysed and my intestines aren’t great either causing me to be dependent on a feeding and drainage tube to function and live. 

There is no cure. It will never go away. 

For people suffering with Gastroparesis, it’s like having the stomach flu constantly without a break. Taking multiple medications including narcotics to control symptoms. Being bloated from a bite of a cracker, nausea from the smell of fries, vomiting from a glass of water, Losing weight rapidly with no control. This is our reality. 

Gastroparesis isn’t common and so it can take a while to be diagnosed. I ended up losing just over 38% of my body weight, slowly starving with my body shutting down. Sadly this isn’t uncommon for sufferers. Its life altering and scary. 

We need more awareness and understanding!

Wednesday, 8 August 2018

Hypermobilty Eduction Session - 7th August 2018

So yesterday's appointment was a bit different.

Patient Trnaspost arrived to pick me and Dad up. We took a pit stop at Peterborough Services and I had my obligatory Costa along with their mini gluten.dairy free cherry bakewells.

We got there a little late as the crew member diving couldn't find the hospital and I was madly trying to get in touch with literally anyone at UCLH to say we was coming and one our way as the appointment letter said if you arrive late you may be turned away and I desperately didn't want that to happen and have a wasted trip, plus I'd made sure that the appointment was during the summer holidays so Dad could come with me (he's a teacher). 

So once we got to UCLH it was a made run, (well, Dad running pushing me in my wheelchair) from the main UCLH building to the Education Centre. We was a little late but we got in most of the session and the physio who took the session is going to email me the power point.

The session covered things like what is hypermobility, pain, symbols and management of symptoms, nutrition and abdominal symptoms, autonomic issues/symptoms and tips for management, posture and footwear (so no more ballet pumps for me!). It also covered the two treatment pathways following the session which is the COPE Pain Management Programme and the Hypermobility Exercise Programme.

We (Dad and I) had a good chat with the physio afterwards, asking things like what of the two treatment options I should do first (I went for the pain management programme first and then to to the excise programme after so hopefully when I do the exercise programme my pain would get in the way so much). I was also anxious about how the exercise programme would affect me M.E and the physio had some knowledge of M.E. and so reassured me that they would work within my capabilities and not push me to breaking point and would build me up slowly at a pace I can tolerate both in terms of my hypermobility and with my other illnesses.

When the physio covered the slides on autonomic issues - things like heart rate, temperature, dizziness - all pre-seizure symptoms so I'm going to trial some of the advice for managing autonomic symptoms like increasing my salt intake (easier said than done as I really don't like salty food), drink more and have smaller meals as the amount of times I have seizures after meals is rediculous but apparently having smaller meals reduces autonomic symptoms as all the blood isn't rushing to to the digestive system.

So all-in-all it was a very productive and valuable day. The physio wasn't sure how long the wait was for the COPE Pain Management Programme but hopefully it won't be too long and then when I've done that I can be referred for the exercise programme.

I left feeling so lucky to be under UCLH now for my hypermobility after so many years of locally hitting brick walls and no one really listening to me or doing anything to help and support me. I have an amazing team of different specialisties that all specialise in hypermobility related complications and other co-mobidities.

Before heading back to the ambulance we took a quick toilet break then whizzed over to the main UCLH building to grab a coffee and a snack and then we set off home.

I had a few seizures on the way back home, probably because I was so tired but travelling via stretcher now for my London trips is defiantly the way forward and I had a nap and I'm loving my new beats headphones as listening to music/audiobooks defiantly help pass the time on long journeys. 

Monday, 6 August 2018

UCLH Gastroenterology Appointment - 4th August 2018

So on Saturday I had another trek down to UCLH in London for a Gastroentrolgy appointment, one that came from my appointment with Dr Kazkaz (rheumatologist).

As the appointment was at 3.45pm I didn't need to be up mega early. Patient transport picked me up just after 11am.

The journey there was pretty uneventful and we had a pit stop at Peterborough Services, the only hiccup was the struggle to find the hospital - we could see it over the road but didn't know how to get over to it and the it was a case of finding where ambulances could park and then it was a case of finding the right building and clinic, but with a but of guess work we finally got there.


TW: Picture of needles

The Doctor I saw was very knowledgeable and reassuring and he's put a plan in place for me to start on a new medication (which I can't remember the name of and I can't read his handwriting!) and another treatment called bio feedback which I forgot to ask what that was, so I'll have to do a bit of googling. He also gave a name to what's going on but again I can't remember the name of it so for that I'll have to wait for the summary letter which should hopefully have it on. He also looked up hospitals closer to home that he knew specialised in hypermobility/neurological related GI issues should in the future things progress and I need more intensive care to save me travelling down to London a lot. He ordered a bunch of blood tests which I has after I saw him and I'm having a follow-up appointment in 6 months time.

On the way home I had a couple of seizures and again we stopped of at Peterborough Services. My new headphones came in perfectly for the journey there and back and I just sat and chilled listening to my iPod which help distract me from the nausea.

I got home around 9pm and got something to eat and drink and watched an episode of something on Netflix then headed to bed.




Sunday, 5 August 2018

One Second Every Day: July - Week 4



  • Monday 23rd July - Difficult start to the day as it was my first day back at group therapy after my week off. It went okay; nothing special. I was shattered when I got back home so I just chilled out for the rest of the evening.
  • Tuesday 24th July - Not the best of days. Feel like everything is weighing me down and I'm feeling quite low, and I know it's part my fault for letting people get to me and for personalising almost everything. I'd been in two minds about treating myself to some new Beats headphone and had been in great deliberation with myself but when my only pair of wireless earphones decided to stop working properly I decided to just go for it and buy them.
  • Wednesday 25th July - Dad and Mandy went away and Mandy only told me this morning so I had to make a hurried call to see if I can get any carers to pop in and as usual Bluebird was amazing an arranged extra carers for me. Most of the day, because I was home alone I spent on the sofa where I was safe. I had the same carer in the morning and evening. I mostly just watched TV and listened to music and did some online puzzles like link-a-pic and word searches and colour sudoko to break up the monotony of watching TV.
  • Thursday 26th July - Woke up not feeling 100% and a bit seizure-ish but I was determined not to let FND win so I carried on with my morning. I had a few bits to pick up from Tesco so when my carer came I insisted that we went. Wrong move. I went into a prolonged seizure in Tesco and eventually and ambulance was called and I was taken to A&E resus. There they gave me meds for my seizures, anti-sickness and pain relief and thankfully my carer stayed with me. When I felt better, (though still in pain) I asked if I could go home. When we got home my carer made me up a tumbler of juice, a coffee and something to eat and ensure I had my meds and phone on me and left me on the sofa to rest. I then had an early night as I was exhausted, plus I had to be up early in the morning ready to set off for my appointment in London.
  • Friday 27th July - Early start to the day (up at 7,30am) to get myself up and ready as Patient Transport is picking my up them we're heading down to UCLH in London for a Gastroenterology appointment. Then at 9am I got a call from TASL to say they couldn't find a vehicle for my journey and they're going to have to call UCLH to cancel my appointment and say that it's entirely their fault. The situation was understandable as I'd be stuck without TASL but I still feel upset and as I've waited months for this appointement and I don't know when the next appointment will be. And I feel frustrated with TASL as I booked the journey weeks ago. I'm currently on the phone trying to get through to UCLH just in case TASL don't call them. In the back of my mind I feel as though God is telling me that I needed today to rest after yesterday and if I had of gone to my appointment today it would have lead to a major crash. Currently now been on the phone for 15 minutes and I'm now doubting whether it will ever be answered? So instead today will be another chill out recharge day as well as trying to get some bits and bobs sorted including my blog and One Second Every Day project and my distance learning course. So I managed to get through to someone at UCLH and they put me through to the sectary and I've managed to rebook my appointment for Saturday 4th August (hoping I won't struggle too much as have another appointment at UCLH on the 7th) but on the plus side I don't have to wait long. I watched a bit of Dirk Gently and had a little nap then in the afternoon I set up on the patio table and did some distance learning work and managed to do two sections of work which I feel quite please with myself about and I also got a couple of replies written to the mail I received today and when it got too cold outside I went inside and took my teatime meds and put one of the letters together then got myself something to eat and now I'm sat watching more Dirk Gently and I'm just going to rest for the rest of the evening as I'm shattered.
  • Saturday 28th July - Fairly mundane day. Just had a lay-in and rested and watched TV mostly - a spoon severing day. My new headphones arrived which was nice and they where very easy to set up and I love the colour.
  • Sunday 29th July - Went to church in the morning, then Spen picked me up after church and we went for a drive to a place called Appleby's where we had coffee (well, I had coffee; Spen had a pot of tea). The rest of the day was fairly boring and I just chilled out, saving my energy for going out tomorrow.
  • Monday 30th - Had a lovely day today. Dad and I went to Gunby Hall (see blog post about it)a National Trust property and it was nice just to spend time just me and Dad. We go there and had out pack-up and then took an wonder round the gardens. We then sat and had coffee and cake before heading into the house where we wondered round for a while. When I got home I was shattered and so went to bed for a nap. I must have slept for about 5hrs (!) and woke up at 10pm, confused, thought I'd overslept thinking it was 10am but couldn't work out why it was getting dark outside. I then get something to eat as I needed to take my tablets and stayed up for a little while and started watching Bad Girls on Netflix before heading to bed where I nodded off fairly well despite my long nap.
  • Tuesday 31st - Had quite a tired pain filled day. I was meant to be going to group therapy but when Dad got home from taking Mandy to work he found me in the hallway having a seizure. The seizure went on for almost and hour so today's plans got cancelled. When I came round Dad got me some pain relief and helped me to the sofa where I had a nap and I spent the rest of the day resting and watching TV.


Gratitude list...
  • Family, friends and carers
  • Helpful and caring A&E staff
  • Days out
  • My faith and church
  • Free healthcare
  • Letters from pen pals


GUEST POEM by Emily

Guest poem by published poet Emily in commemorationof the centenary year of the Suffragettes who finally succeeded in their mission to get the vote.

Emily's poems are published in a book called 'Ballerina' which is published by Tomser Cat publishers, a link can be found here.

"In commemoration to all those who defended my voice,
long before I could speak"...




Suffragette I'll stand beside you. Speak when you're too worn when countries burden you when history re-writes your legacy, I will stand in your stead. Lead those into unity Hold composure and while others turn and forget I will always speak of your victories. I will carry you on my voice, as my strength and my memory. Though your politics, your leaders And your own might discriminate I refuse to cover, turn my back on you. One torch might burn in dark solitude But if held high It can spark the actions of millions.

Wednesday, 1 August 2018

Gunby Hall - Day out with Dad

So on Monday Dad and I went to visit a National Trust place in Lincolnshire called Gunby Hall. It wasn't actually that far away and only took about 45 minutes in the car which was nice and manageable. 

We arrived around 12.30pm and sat in the courtyard and had our packed lunch. We had nice weather for the day - not too hot but not too cold and no rain.



We got a map of the wheelchair accessible route round the garden and so after lunch we set off round the gardens and there was lots of beautiful flowers in bloom. 
It wasn't 100% wheelchair friendly as most of the paths where gravel and I had to rely upon Dad pushing me. Some of the paths where also a little narrow, but I have a narrow wheelchair so we managed okay there was also some mini steps that where marked as grass ramps on the map but they wasn't any so at times Dad struggled especially with the tip guard being so low on my wheelchair (which needs looking at) but we did manage it. So if you're a wheelchair user I would recommend that you'll need someone with you if you're in a manual chair, it may be easier in an electric wheelchair, but that depends on your chair and I've never used one and you'd need a narrow-ish scooter too to get round some of the path but I'd say it is possible. But all-in-all it was a pleasant wander round and I'd say in terms of accessibility it depends on whether you can walk around as it's not huge and it depends on your wheelchair/scooter.
There was also a church to visit but that wasn't part of the National Trust and we didn't take a visit to that. 
They also go guided tours of the gardens which tells you about the gardens and grounds and the plants there, but we didn't go on one.

We then stopped off at the tea rooms and sat outside and had a coffee and cake.


Next we headed into the house. This wasn't wheelchair accessible so I used my crutches and there where seats dotted around to sit on and rest.

In the first room we entered there was someone playing the piano which was lovely to listen to (see video). We wondered round and unlike most National Trust properties all the items in the house belonged to the house. We wondered round and peered in the various rooms and I enjoyed looked at the titles of the books dotted around on shelves and in the library and also spotting William Morris wallpaper and other wallpaper designs (textile design geek here).


It wasn't full day out which was nice as it wasn't too tiring. I was in a some pain from walking round the house but unfortunately due to the nature of of old houses which are often listed buildings which the National Trust look after they are not built for wheelchair accessibility unfortunately which makes it hard when you're like me an enjoy visiting places like the National Trust.

All-in-all it was a lovely afternoon out and somewhere I'd recommend visiting.