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!

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 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.

Thursday, 26 July 2018

Status seizures and 6th A&E admission of the year

So I woke up feeling seizure-ish which continued but I just tried to carry on as normal and not let FND stop me. My carer came at 11.45am and I had a few things to pick up from Tesco so we got ready to leave the house. Despite not feeling 100% I was determined to just get on with my day. Unfortunately nearing our end of the Tesco shop my myoclonic seizures was getting worse and my carer was getting a bit concerned. I then just said "I need to get out of my wheelchair" so my carer swiftly got me on the floor and used my seat cushion to put my head on.

The seizures continued for about 25 minutes until my carer and the Tesco first aider decided it was time for an ambulance, especially as my tonic-clonic seizures where increasing nano getting more violent. Apparently Tesco was amazing. They blocked off the aisle and at each end of the aisle had someone stood their to ensure no-one was going to be nosey to give me my dignity and they grabbed towels to cushion me. My carer was also amazing in dealing with my seizures and later asked me if she did the right thing which I told her she couldn't;t have don't any better.

When the ambulance crew arrived they knew me from the past and dismissed my Professor's care plan and apparently didn't t treat me the best way and was a bit rude to my carer. They was only and EMT crew so couldn't give me the IV Diazepam my care plan states I needed to be given and when shown my care plan from my consultant barely looked at it. Apparently thought they know best and that I'd just 'snap out of it'. It seems daft that they'd send an EMT crew to someone in status seizures?! Later on in A&E though the EMT apologised to my carer as he realised that this episode was a bad one and didn't go about it the best way about it initially.

In A&E I was taken into resus and given IV Diazepam, cyclizine, and various pain relief meds. My carer arrived at A&E to stay with me with I was very thankful for and they was very busy in A&E so she did some care tasks and she filled me in with the missing gaps from when I'd been unconscious like how rude the EMT crew had been to me and her and how amazing Tesco had been and how the Tesco first aider also wasn't t happy with how the EMT crew treated me. I knew things must have been bad coming round in resus and thankfully the Dr looking after me actually followed my Professor's care plan and gave me the Diazepam I desperately needed. After the cyclizine and pain relief I was still in a bit of pain but desperate to get home where I'd be more comfortable and could rest and I always feel a burden on A&E when they're busy but my carer just kept reminding me that I needed to be there as I'd had a really bad seizure.

A&A was absolutely jam packed with people and patients and they was struggling for staff but in resus they got my meds to me eventually without a too long wait and the nurse was understanding of my pain especially how my hypermobility is affected during my seizures.

I absolutely hate having seizures in public as feel I feel so self-conscious and I get anxious leaving the house in case I do have a seizure or fall ill. Most of the time I'm at home due to my FND and M.E. and only really go out when I have someone with me that knows how to deal with my seizures so I am pretty limited but I try not to let it hold me back and try to keep life as normal as possible.

When we got home my carer made me something to eat and filled up my tumbler with juice and made me a coffee and ensured the fan was in the front room and I had my meds and phone on me.

I'm now resting, keeping topped up with pain relief and hoping I'll be up to going to London tomorrow for my gastroenterology appointment.

I also missed my delivery which I'm guessing was my new headphones which I'm pretty gutted about but I've rearranged it for Saturday and thankfully I didn't miss my pharmacy delivery. I also got some PostCrossing mail which included a lovely picture from one of the PostCrosser's daughter.

For now I'm just going to rest up and later get myself ready for tomorrow.

Today's PostCrossing post

[Image description: picture of the mail I received today Including a postcard from Ireland and another postcard of a textile piece of artwork of Woodbridge Tide mill and then two drawings, one a pencil drawing of a lady the other picture is a child's picture of a yellow haired princess with two other people.]

Tuesday, 24 July 2018

One Second Every Day: July - Week 3

  • Monday 16th July - I've had a pretty busy day. This morning I had a long conversation over the phone the Genetic Counsellor in preparation for my appointment on Wednesday. I then got washed and dressed and did my make-up and then got some lunch. Then my friend Abi came round for a few hours and we sat and had a good catch-up as we haven't seen each other in a while. I then got my tea with Mandy. I then made final preparations for going out for half 6, packing a picnic blanket and two flasks in a bag and then my friend Spen came and picked me up and we took a drive round the countryside and went to a place called Willows Lakes and we set up the picnic blanket and got out our flasks and had a good chat about all sorts of topics. Got home pretty late so I made myself a cup of tea and then headed to bed.
  • Tuesday 17th July - Bit more of a chilled out day as had noting on in the day time so put on my comfy clothes and watched TV and wrote out a load of PostCrossing postcards and replied to some of my pen pals. In the afternoon I got myself ready and did my make-up and at half 6 Spen picked me up and we took a scenic route to Louth and (eventually) found Wetherspoons and went and got something to eat. We went the scenic route back home and got back quite late again so like the night before I made myself a cuppa and went off up to bed.
  • Wednesday 18th July - Had a better nights sleep only waking up once for a short while which I was glad of as I had a busy day ahead. I got up and got some breakfast then had a wash at the sink and got dressed and did my make-up (wow, that's 3 days in a row now I've worn make-up!). I then packed my bag and put in some things to eat. Patient transport arrived just before 11.30am and then we got on the ambulance and buckled up and then headed towards Sheffield's Northern General Hospital. We arrived at the EDS Diagnostic Centre in plenty of time so I did some blog related stuff on Instagram; making the most of the free WiFi whilst I waited. I then went in and saw the Dr and a Genetic Counsellor who asked me some questions and they then did a physical exam of my hypermobility. They also took a sample of blood to be sent off for genetic testing and the Genetic Counsellor will get back to me once the results are back. We then headed home and it was a nice straightforward journey. I'm now feeling pretty shattered so I've made myself a coffee and I'm going to have a nap. I've done some updating on my blog uploading last week's 'One Second Every Day' project and started a post about my appointment today.
  • Thursday 19th July - This morning I had to be up at 8.20am to make a phone call at 8.30 am but once i made the phonemail I went back to sleep. I then got up and ready fro the day and put make-up on again (!). At 2.40pm I had a check-up with the Asthma Nurse  and then Dad and I went to The Range to buy a few bits and bobs and also to have coffee. I then went home and wrote a letter and had a nap on my bed and then had a chilled out rest of the evening.
  • Friday 20th July - A fairly quiet day; I was able to sleep in today. I did have some jobs to do but I was quite tired so i just rested on the sops. The evening wasn't very good as I had a VERY long prolonged seizure so that really through me in terms of pain and fatigue. Dad gave me my medication and Mandy made me some toast and a drink. I was exhausted but covered in sweat so with a bit of help I sat in the bath with a small amount of water and a jug just to get clean and then I went to bed.
  • Saturday 21st July - Had a lay in as I was shattered from yesterday's seizures and also because I kept waking up with severe joint pain. Today I've not done much as I've been in a lot of pain and had high levels of fatigue. I've gotten reply to a letter from my pen pal Ella and I've managed to do a sticker by numbers picture; apart from that I've just watched television and kept topped up with pain relief and anti-sickness medication. I'm hoping to have the energy to wash my hair before bedtime, even if it's just a shampoo and then spraying leave-in conditioner in it. My Aunt and Uncle from Goathland came over to stay the night as my Uncle was running the Grimsby 10k with Dad tomorrow.
  • Sunday 22nd July - Didn't go to church today du to road closures as it was the Grimsby 10k run today. In th afternoon my other Uncle and his girlfriend came round and everyone ate but I was going on a picnic so whilst they ate I packed up the picnic blanket, two flasks, some fruit and made some sandwiches and then sat with the until Spen picked me up at 2pm and we took a drive to Willow Lakes for our picnic. Spen brought crisps and veg sticks and we had our picnic and the weather we great and then we sat in the sun for a bit and then too a scenic drive back home. When I got back home I realised I was a bit sunburnt, oops! I was pretty tired when I got back home so I spent the rest of the day afternoon/evening in the sunroom watching Netflix and dosing. Dad and Mandy went out to a BBQ so I had the house to myself so I enjoyed the quiet - I just get anxious being home alone in case I had a seizure or a fall etc so I just tend to stay on the sofa where I safe(ish).

Gratitude list:
  • The NHS and free healthcare
  • Medication
  • Sunshine
  • Being well enough to do things like go out
  • Friends and catch-ups
  • Quiet
  • Patient Transport
  • My Dad
  • Free WiFi

Sunday, 22 July 2018

Picnic on a sunny day

So today the temperature was pretty hot and I'm still exhausted from Friday's seizure episode but I had a picnic planned with a friend which I'd been waiting to go on since Tuesday and it's on my bucket list of things to do.

So this morning I made up some sandwiches, put some fruit together and made up a couple of flasks and put it in bag with a picnic blanket - my friend was bringing hummus and veg sticks and crisps as well as doing the chauffeuring.

We went back to our favourite spot at a place called Willow Lakes and set up out picnic and ate and chatted then we laid on the picnic blanket and chatted and let the world pass us by. I forgot suncream so am now a bit sunburnt, oops!

On the way home we took the scenic route though he countryside and little villages and hamlets.

I was getting a bit tired in the car and I could feel that i was slurring my words a bit and it was an effort to speak and i was pretty tired from the heat. Thankfully my body behaved and I didn't faint like I usually do in the heat.

I'm now home somewhere cool with the fan on and I'm probably now just going to put on some Netflix and have a dose.

(PS, excuse the poorly taken photograph)

[Image description: red checked picnic blanket with picnic items laid out including napkins, flasks and crisps]