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]

Saturday, 21 July 2018

An exhausting day

Yesterday I had a VERY prolonged seizure lasting almost 3 hours. Dad doesn't like to call out the paramedics due to lack of understating of my illnesses and poor care experiences in the past. He managed to get some medication in me but hopefully once we have the oral diazepam and buccal midazolam prescribed it will make situations like this much better. I'm seeing my GP in the 15th August and I'm going with my nurse for support so hopefully with my Professor's letter and care plan in hand my GP will comply but I've been having some issues from him so we shall see; if he doesn't comply we'll take it from there and hopefully once the Complex Care Team get involved that will hopefully help the situation too. I'm also going to show my Wellbeing Workers from the Wellbeing service the letters my Professor has sent me this week as they've been doing some care co-ordication too.


Ella's letter
All night I kept waking up in severe joint pain and ended up using my oramorph and I struggled to get comfortable. I had a lay in and got up and as a distraction I started creating a reply to a letter for one of my pen pals Ella and got myself dressed and some breakfast. I then watched some TV for a bit until lunchtime. I was still struggling with pain so I decided to do a sticker by numbers picture which was quite fiddly and difficult to do as I was having spasms in my hands and I was also struggling with concentration and it was a bit brain fogging but I felt a sense of accomplishment when I finished it, especially because of how much ore effort it took up to do on a day life today. After that I just laid on the sofa and watched TV. I've now had my tea with Dad and I'm just letting my tea settle. I'm hoping to have enough energy later to wash my hair, even if it's just a shampoo and they spraying in some leave-in conditioner.



When I have seizures it has a knock-on effect with my health, even just one seizure, let alone several hours of seizures. Because of my hypermobility the force of the seizures causes my joints to sublux/dislocate and my muscles spasm causing an immense amount of pain; pain which carries on sometimes for days, hence why I've been in a lot of pain today. Seizures are also very tiring so I sleep a lot and need to lay and rest and it stirs up post-exertion malaise. My brain is also very foggy from the pain and tiredness so I get more forgetful and find it hard to concentrate and tasks take a lot longer to do. I'm also more hypersensitive so my tinted glasses help and I turn the TV volume down or just enjoy the quiet. I'll still be feeling the effects for the next few days.

[Image description: First image is of a letter folded out, second image is a picture of my completed sticker-by-numbers picture next to that is a short video of me doing my sticker-by-numbers]




Friday, 20 July 2018

Trip out to The Range

So ever since my birthday on the 17th June Dad has been promising me that he'd take me the The Range for coffee and to browse all their craft stuff and finally yesterday (19th July) we went.
I had a few things on my 'to buy' list like water brushes (I actually found watch I was looking for in a cheaper version) for watercolour painting (I got some watercolour pallets from Dad for my birthday) and some sponges for painting and adding texture. I also needed a new messy mat as I'm not sure where mine has got too. I also needed more envelopes, address stickers, glue and clear tape.
Going round I spotted a new collection of craft bits called 'Moroccan Haze' and I haven't done any folded out letter in a while as I ran out of 12"x12" paper so I put some of that in my basket along with some matching supples like stickers, washi tape and ribbon.
Apart from the matching washi tape I refrained from buying any more washi tape as I have loads at the moment. I also bought some stickers but again I restricted myself as I have quite a lot at the moment that I want to use up first. I also found some pearlescent spray paint which I thought would be nice to add a bit of shimmer to my paintings.
I enjoy going to The Range as there's always new things that they're putting on the shelves.
After I shopped myself out Dad and I went to the cafe and got  two coffee's which we drank and I went through my basket and took out what on second thought I didn't need.




I was tired when I got home but pleased with my purchases and I chilled out making a letter for one of my pen pals.

[Image description: items bought from The Range including patterned paper, stickers, table mat, paint brushes, painting spongers, tape and glue sticks]

July Birchbox

So to try and jazz up my blog I thought I show you what's in my monthly Birchbox.

Birchbox is a monthly subscription box where you receive 5 beauty products, from cosmetics to shower stuff to perfume samples. 

I absolutely love my Birchbox and the start of each month when I know my box is on it's way to me. I have a beauty profile with things like my skins and hair type and how adventurous I want to be with my make up so my box is customised to me.


So this month I received a Browcote waterproof brow gel (which is a bit like mascara for your eyebrows), a 'Merci Handy cherie cherry' hand cream which I haven't used yet as I'm still using my Birchbox Cath Kidston hand cream from April, a 'What's in it for me?' shower scrub which smells amazing and I can;t wait to try out, a 'Balance Me' congested skin serum which is great and goes really well with the other Balance Me facial products that I've received in previous Birchbox's and a 'Manna Kadar' multi-use powder which can be used on the cheeks and eyes - this one i got to choose the shade so I went for the shade Blush; I haven't used this one yet as I'm trying to use up what make-up I already have on the go.


Most months you get a chose on one of the products, like todays I received an email asking me what shade of eyeshadow I wanted in next month's box. You also guaranteed to receive at least one full-size product, but often the sample sizes are pretty decent. 

I've been getting my monthly Birchbox for quite a while now and you can cancel anytime and Ive built up a box of products so when I feel in the mood for a pamper I got out my box of Birchbox products. I've also come across products and brands which I love and have go on to buy them in the Birchbox shop.

I'm still perfecting this type of post which i'll aim to do each month so if you want a better review or more information about what I go just leave a comment.


Thursday, 19 July 2018

EDS Diagnostic Centre, Sheffield - 18th July 2018

On Monday the Genetic Counsellor called me and we spent almost an hour talking and me being asked questions ready for my appointment on Wednesday. 

Then yesterday I had my appointment with the EDS Diagnostic Centre in Sheffield. I went there as I was referred my my rheumatologist to be tested for a form of Ehlers-Danlos Syndrome known as Vascular Ehlers-Danlos Syndrome (vEDS). Fact: there are 13 subtypes of EDS.

The journey went well and we arrived in plenty of time and thankfully with Sheffield only being a couple of hours away I didn't need to be up mega early like I do for my appointments in London.

Whilst I was in the waiting room a lady came out to me to ask me some questions like my height and weight and consent for pictures to be taken if needed and also to share my information for research and teaching - I'm all for research and education so I was very happy to consent.


At 2pm I went into my appointment with the Dr and Genetic Counsellor and the Dr asked me some further questions in addition to the questions the Genetic Counsellor asked me over the phone. 

The Dr then did a physical exam looking at my joints and also my veins to look at my how hypermobile I was and also to look for features of vEDS such as bruising, prominent veins and particular facial features.

EDS is a genetic disorder and vEDS can be diagnosed through a genetic test so a sample of blood was taken and when the results are in the Genetic Counsellor will contact me. Hopefully the results will come back clear as vEDS is quite a serious condition to have.

The journey home was also pretty straight forward apart form having a spasm attack down the motor way which was a bit painful as they usually are but being laid on the stretcher was much more comfortable than if I was sitting in my wheelchair.

*Personal views below*
During my consultation I brought up about the unbalanced way EDS, especially hEDS (Hypermobile Ehlers-Danlos Syndrome) is being diagnosed and how some people are diagnosed by their GP who have very little knowledge of EDS and then there's others like myself who go through appointment after appointment with specialists to be assessed for EDS and the Dr totally agreed with me and said that she believes that GP's shouldn't be diagnosing conditions like hEDS as they simply aren't equipped with the proper knowledge to diagnose such a condition. 
We went on to discuss how this unbalanced way of diagnosing means that there's people who have been diagnosed by say their GP (especially if you go to your GP and say "look I'm hypermobile, and I've looked it up and I think I have hEDS?") as there's a lot more out there now about EDS which is great but it's leading to people I believe being misdiagnosed or maybe even self-diagnosing (as you can be hypermobile but not have hEDS or HSD (Hypermobility Spectrum Disorder) for instance athlete, dancers and gymnasts) who probably, if they saw a specialist like I have wouldn't actually meet the new criteria for hEDS/HSD. In addition to this, being misdiagnosed with an illness, any illness, can lead to the person taking medications they don't need and other treatments like braces and splints which if they don't really need it will lead to muscle weakness and wastage. Plus it takes a huge toll on the NHS.
GP's need more knowledge and shouldn't;t be diagnosing rare illness, instead they should be referring to specialist for assessment rather and doing the easy (and maybe cheaper thing for the NHS) and diagnosing themselves.
But also now under the new classification there are people living with the old EDS Type 3 (Hypermobile Type) who now under the new classification wouldn't meet the new criteria for hEDS*, which again the Dr agreed with me on that.
And having HSD doesn't mean that you're suffering less than those with hEDS. Personally I've noticed recently that it seems to be the 'in thing' to be diagnosed with hEDS? You don't need the label; we are more than out illnesses. 

* Hypermobile EDS and Hypermobile Spectrum Disorder

Wednesday, 18 July 2018

One Second Every Day: July - Week 2


  • Monday 9th July - Felt quite low today but a trip to the hair dressers picked me up a bit. I struggle with washing my hair and I really don't want to cut my hair short so someone suggested to me about going at getting my hair washed at the hairdressers which was a nice pamper. I've booked in for 2 weeks time and in the mean time I have my Dad and carers and when I feel up to it if possible wash it myself to try and reduce the usual greasy hair look that I normally unfortunately have to put up with. When I got home I was exhausted so I just laid on the sofa and half watched/half dosed with the TV on. I did plan on having an early night but now I'm in bed I'm a total insomniac. I don't think my low mood and and anxiety are helping so i may resort to taking some extra promethazine and tomorrow's plans may have to change but I'll see how I am in the morning. Hopefully I can get to sleep soon as poor sleep nights end up with me just going into crash mode which I really would rather avoid.
  • Tuesday 10th July - Had a very low day today. Struggling physically and emotionally so just took the day in baby steps. I got some nice mail including some PostCrossing postcards and some charms and certificates from the Bravery Bottles project. As a pick-me-up I ordered some flavoured instant coffee - when I went into hospital Mandy bought me a little selection pack which I really enjoyed so I treated myself to some to drink at home. I bought two jars of flours I liked them a section box of 100 sachets which should keep me going for a while!
  • Wednesday 11th July - My social calendar when a bit haywire today. This morning I went out with my carer and we ran a few errands then we took a drive to Bring Garden Centre and I have coffee and a Naomi friendly rhubarb crumble cake. Then in the afternoon two ladies from the Wellbeing Service came to see me. I then got ready for the evening when I went for coffee and to the cinema with a friend. We went to see The First Purge. I wouldn't quite class it as a horror film but it was good and it had a good catch at the end. I was utterly exhausted when I got home but I couldn't get off to sleep. i was in fair bit of pain and it was just one of those nights.
  • Thursday 12th July - Woke up more exhausted than I was at bedtime and because last night was out of routine because I was out I forgot to take my night meds *oops* so no wonder I was in such a lot of pain. I took what night meds I could take in the morning should I forget to take them at night time and took my morning meds and some pain relief and (little victories) got dressed and my breakfast with a nice cup of tea and watched TV. The post came and I got some postCrossing postcards and a couple of letters from pen pals. I fell asleep watching TV for a short while but felt better for it. After some lunch I had a bit of energy so pacing myself I got a bit of tidying done in my bedroom and I got another section of my distance learning course done too. My order of coffee arrived which was a nice surprise but the packaging was badly damaged so I took some photos and emailed it to the company and called them us to and they said they'd send me another 100 sachet section box so I now will have 200 sachets of coffee!! If you don't ask you don't get so it was worth making that little complaint! Then at 4pm I booked a taxi as I had the dentists at half 4. I really don't mind the dentists as the dentist I see and have seen ever since I've had teeth is amazing and has a few patients with hypermobility so he's aware of the issue is causes like jaw subluxtions so he uses smaller dental tools and gives me plenty of breaks so I've not got my mouth open wide for too long. I said to him that I attribute my lack of fear over the dentists down to him which he really appreciated. My jaw is now a little sore but I'm just chilling with an Almond Amaretto coffee and some paracetamol. This evening Dad, Mandy and I watched another one of the The Purge films which was good then Mandy an I squeezed in an episode of Desperate Housewives before the 10pm news which Dad likes to watch. I'm now winding down and hoping to get a better nights sleep than yesterday.
  • Friday 13th July - Didn't sleep great again so had a lay in. I waited for the pharmacy to come and deliver my medication the got myself washed and dressed. It was a fairly unproductive day. Just resting and looking after myself.
  • Saturday 14th July - Semi-productive day. Paced myself between getting jobs done and resting. Get a few letters written and tidied up a bit; also got some studying done. Also watched a really good film on Netflix called 'Before I Wake' which was really good.
  • Sunday 15th July - Made it church this morning though my hip was playing up. After church when I got home and watched some TV then at half 2 I went to a BBQ hosted by one of my church friends whose in our Connect Group. The weather was lovely and I made the mistake of not getting changed so I was in jeans and a t-shirt so when I got back I got changed into something cooler and more comfortable. I was also pretty exhausted so I did start to watch something on Netflix but nodded off instead. Mandy thinks I might have a little bit of heat stroke. I had a late snack around 8pm (I don't usually eat that late) and went up to bed around had 9 and settled down with a cup of tea and Netflix on my iPad.

Gratitude list:



  • Friends, family and carers
  • Leaving the house
  • Cups of tea and coffee
  • Lay ins
  • Pharmacy delivery (the driver is lovely and so helpful)
  • Summer weather

Monday, 9 July 2018

One Second Every Day: July - Week 1


  • Sunday 1st July - In a bit of pain today with my hyper-lordosis but made it to church this morning with help from pain relief and my TENS machine. Had a bit of a creative afternoon painting some postcards experimenting with my new watercolours and Brusho crystal paints. It didn't quite go as I planned, by hey, that's art and I just need to keep practising. I also managed to wash my hair so now feeling pretty exhausted so just watching some TV and doing a few blog things and I think I'll head up to bed when Antiques Roadshow has finished.
  • Monday 2nd July - Bit of a dull day. Dad and Mandy decided that we'd go up to London tonight rather that get up early tomorrow for my appointment tomorrow in London so when Dad got home we quickly got something to eat we packed out bags booked the hotel last minute and set off down the motorway. We stayed in north London and arrived that the hotel around 11.15pm.
  • Tuesday 3rd July - Didn't sleep great; I found it hard to get off and and kept waking up at silly hours so I put the TV on to fill the silence. It was quite a good job I didn't sleep great as I realised that I forgot to turned my portable alarm on! I had a quick shower improvising sitting on the floor of the shower as it wasn't an accessible bathroom and got ready. My appointment wasn't until 12.30 so we didn't have to be up mega early, but early enough to negotiate London traffic to get to SW London and it was quite a nice scenic drive looking at the buildings and people. It was a year ago tomorrow that I first saw Professor Edwards and he was once again amazing. (I'll go a better blog post about the appointment.) It was a hard appointment but I just need to hold onto hope. After the appointment we headed to the cafeteria and got something to eat then set off home. I'm now home in bed, exhausted and ready for sleep.
  • Wednesday 4th July - Had a bit of a bit of a lay in this morning as I've moved my carers call to a bit later in the morning. Instead of going in the car to the post office I decided to take a walk. It was exhausting and I'm pain but i'm trying to be around of myself. The walk may be short to some but to me it pushes me to my limit and I had to lean on my carer on the walk back and we assessed on the way how I can make the journey in my wheelchair. I posted a bunch of PostCrossing postcards and a few pen pal letters
  • Thursday 5th July - Felt a bit low today. I received two PostCrossing postcards today including a sparkly Moominmama postcard from Finland with a pretty carousel stamp. I had a fall in the evening as my legs decided to go in spasm. I hung out on the floor for at least an hour in spasm and Dad put some cushions around me and gave me some pain relief (this is where we could really do with the rescue meds Professor Edwards wants my GP to prescribe) and then with Dad's help we managed to shuffle and get onto to sofa. I was still in spasm but I watched some stuff on my laptop as a distraction. The spasms still continued but I managed a bit wobbly and with help from Dad to get up to bed.
  • Friday 6th July - Had a bit of a lay in this morning and have been a bit brain fogged and my myoclonic seizures and spasms are still playing up and I've struggled to concentrate on much. I also got my transport booked to take me to Sheffield on the 18th for my EDS genetics appointment. With my birthday Amazon voucher I bought another sticker by number book 'Neon Nature' and that proved a much better distraction and also a huge sense of accomplishment when I finished it which felt nice. I also got a few more letters finished. The other day when I had my mega letter writing session it felt a loss that I had no letter to write which I enjoy doing but a few letters from my pen pals came in the post yesterday so I got letter writing again this afternoon and along with the sticker by numbers picture I felt a lot more productive than just watching TV all day.
  • Saturday 7th July - Not much going on today. Little victories like getting out of bed and getting myself dressed. I like this time of year as I can sit in the nice warm sunroom and watch things on my laptop with a nice cup of coffee/tea. The weekends are always quiet and I lite to make the most of them and to recharge my batteries.
  • Sunday 8th July - Made it to church this morning. The afternoon was spent resting and I got a section of my distance learning course done. 


This weeks gratitude list includes:
  • My faith and church family
  • Mail that makes me smile (writing and sending)
  • Pain relief
  • My creative mind
  • My Dad and Step-mum who are willing to go down to London for me
  • Professor Edwards and being able to see other specialists and my nurse Debbie
  • Patient transport
  • Being able to concentrate (something so small and simple but a big deal when you have a chronic illness)
  • Little victories
  • The invention and discovery of tea and coffee
  • Free distance learning courses
  • Weekends


Wednesday, 4 July 2018

Professor Edwards Appointment: 3rd July

So today I had my second appointment with Professor Edwards at St. George's Hospital in London. It was a year ago today when I last saw him. 
He started off asking in there has being any changed ins my symptoms. We also went through the test results of my video telemetry and he's pretty sure that all my seizure are non-epileptic in nature. I said how my muscle spasm attacks where getting worse and how problematic and painful they are because I'm conscious but I can't do anything and I'm in a heck of a lot of pain with them and with the complication of my joint hypermobility it causes my joints to sublux/dislocate but also I can't do things like voluntary move because I'm in rigid spasm and I can't eat or take medication etc. I also said how helpful having my wheelchair has been and how my weakness has worsened such as having more falls and dropping things. I also mentioned that my pain has flared up recently and also how the clonazapam has helped a little, reducing my tonic-clonic seizures and really reducing my absence seizures. I also said how my cognitive function and 'bring fog' has become more problematic. Dad and Mandy said how my tonic-clonic seizures have changed which I'm unaware of because I'm unconscious during those episodes.
I explained the difficult relationship with my GP and how he wouldn't prescribe me diazepam without an explanation despite how infrequently I used it when he was prescribing it to me so Professor Edwards is going to write to my GP to try and insist that he does give me access to that medication. 
We also discussed ways of reducing my needs for ambulances and A&E so we thought about buccal Midazolam to be used only in the extreme and I said that my nurse can arrange training on that. So hopefully my GP will prescribe that too and he wasn't able to prescribe himself so fingers crossed my GP will be on board if not I have a few back up plans in my mind and my nurse is going with me to see my GP in a few weeks so hopefully Professor Edwards will have written to my GP by them and we can get this medication prescribed. Professor Edwards is also going to rewrite to my GP highlighting education and understanding around FND and M.E. and he was very understanding of the prejudice and 'Neanderthal thinking' (as he put it) around illness like FND when I explain to him how I'm treated in A&E and with my GP. 
Professor Edwards also gave a really good explanation of what FND and M.E. is and how the the brain works, or doesn't work in my case and how there can be a multitude of reasons for this just like with other illnesses like strokes or MS.
I got a little bit upset in the appointment as I just want my life back and with me having multiple neuro symptoms he classed my case as severe but he said there is hope and I need to hold onto that and University and independent living isn't an unachievable goal for the future. He explained some treatment options. One is a rehab programme at Stanmore which is for people with pain and hypermobility and the other is Leeds. The Leeds program I will most likely qualify for as we've exhausted all local resources as we have to apply for special funding for that and part of that is that local care has been attempted but the neuro symptoms are still present and severe. 
I had a little 1:1 chat with him and explained how bad things can get, like how I struggle to do the most basic task some days/weeks and I mentioned Continuing Health Assessments and he's going to put some supporting evidence together for that and he was happy to hear about the local complex needs team that I've been accepted for. I also think he's going to write something about an ambulance care plan when I explained to him how I respond to seizure treatment and how when needed things like Entonox helps with my muscle spasms? If that's not in his follow up letter I'll get in touch with him about that as we really do need an ambulance care plan for times when ambulances are needed but primarily the aim is to reduce the need for ambulances and hospital admissions.
Professor Edwards is also going to refer me to a specialist M.E. team as we don't have anything locally and I felt it would be helpful to see and speak with people who understand M.E. and offer me treatment and advice on living with the condition.
Think that's about everything. I'm going back to see him in 6 months time. I feel such gratitude to have Professor Edwards as part of my care and what he does for me and his great kindness and empathy like when I got unset in the appointment saying "I just want my life back" and him just being so understanding and how at the end of the appointment he picked my bag and crutch up and handed it to me; no other clinician has ever done that for me, and true me, I've seen a lot of clinicians over the years!

Monday, 2 July 2018

GUEST POST by Rachael

Hi, Im Rachael, 21 years old 'living' with multiple chronic illnesses. 

"The ocean holds her, 
cradles her
in its tides
and she is
motioned by
the moon to
feel a bit more
pain, feel a
few more
salted wounds
before receding
back into
her grace."
Joe Straynge.

I love how this poem understands the way chronic illness can take control of your whole being yet as one rides it through you can witness pure grace, strength and growth.
In no way, shape or form would I glamorise chronic illness. Its not pretty, nor is it dignity. Often its no way to have to live, but I find this poem acknowledges that sometimes even in the darkest of times, something positive can come from it.
In 2011 at the age of 14 I was diagnosed with Complex Regional Pain Syndrome down my right side and after emergency surgery - for unrelated complications still under investigation, it spread across my whole body. Unlike many I do not have an explanation as to why my CRPS developed.
I am a part time wheelchair user and despite what people would assume it does not make things much easier. I still feel all the vibrations from surfaces, every push pull turn and temperature change. Not only this but it's hell to find decently accessible areas! My chair is manual so due to cramping, weakness and fatigue someone pushes me. Don't get me wrong its great to have it for the rare times that I leave the house but it really does cause anxieties and often a flare just as bad as if I was to walk.
I have had to teach myself how to walk, talk and write several times over the years and faced intense bullying from students, 'friends' and staff in education and workplace. Due to processing difficulties and previous events through mental health I am unable to manage my own medication. When I have the energy and ability to withstand the extra pain of water beating on my sensitive skin I often have to be washed by a family member. Then expect a long day ahead as that uses most of my energy up. Something most fail to realise.

After countless admissions, issues with my heart stopping followed by frequent hour long fits, my knees elbows and wrists popping out of place and locking, severe memory loss,30 pills a day, sudden paralysis from my waist down lasting days or weeks at a time, intense fatigue, insomnia, inability to continue university, work or drive, unbearable sensory overloads and severe weight loss after another surgery I was directed to a 'CRPS Specialist' in Plymouth, UK for the end of 2017. GREAT!
He turned out not a specialist in CRPS but (!) he is the only one in 7yrs who has demonstrated an acceptable amount of knowledge! He listens, gets treatments moving for me and above all BELIEVES ME. No more blaming my pain on 'growth' or 'stress'!
He was also the one who diagnosed me with further debilitating and limiting conditions which I'm unfortunately deteriorating with currently; Dysautonomia including Postural Tachycardia Syndrome (POTS), Orthostatic intolerance, Dissociative attacks, Subluxations, Polyarthralgia, Depression, Anxiety, Chronic Sleep Deprivation, Patellofemoral Pain syndrome and others, such as GI symptoms, which are still under investigation.
Great to have answers but at 21 I am unable to leave the house alone and I cannot be left home alone for long. I've gone from competing highly across the country for rowing and swimming and performing on stage for fun to not a whole lot.
POTS makes it incredibly difficult to remain safely upright for a period of time and due to GI issues I am unable to consume any item of food or drink without being in agonising pain and looking like I'm about to give birth through horrendous bloating. Hense why food intake has been reduced and I've lost a substantial amount of weight.

Unfortunately all my illnesses can trigger one another and stress/low morale makes them so much worse. I am living in a harsh limbo and a viscous cycle but am trying to accept that despite being bed bound more often than not and questioning daily what strength I have to go on, I am a warrior.
I passed school with 13 A*-Cs, I completed college with triple distinction * on one course and 11/11 A* for another and was passing university with flying colours before I had to quit. I managed all this whilst suffering chronic illness. I may have a different route to take now- whatever that's going to be - and I often feel like I'm falling behind as I cannot do anything independently but we must remember that life has no set time scale and we can complete what we desire in our own timeline. When it is best for US as HEALTH COMES FIRST. Most importantly we know our bodies better than anyone else, so listen to it. Know that it is real and what you are feeling is valid. I want to use my negative experiences for positive by helping others as much as I can. I don't want others to be so isolated if it can be helped!

Thank you Naomi, for offering to share my story to create awareness. I really appreciate it as others ignorance really is the hardest part to deal with!
If only one thing is taken from this post, please let it be that you cannot judge somebody's reality, illness or life by one photo. Things can change so very quickly.

Thank you for reading and always remember, in unity there is strength! 

Sunday, 1 July 2018

One Second Every Day: June - Week 5


  • Monday 25th June - A VERY anxious morning to the point I was physically unwell. A bit of a dull day. Yesterday I discovered a new programme 'This Model Life' so I watched a few episodes of that in my rocking chair in the sunroom where it's nice and warm and now I'm going to edit a few things on my blog and head up to bed.
  • Tuesday 26th June - If I thought my IBS and gastro symptoms was bad yesterday then today was horrendous. I've been i so much pain - hugging my heat pad so tightly and keeping dosed up with meds and unable to at much without the pain flaring up. I had some detox tea to try and help and am going to buy some more digest tea bags tomorrow and I've just kept myself distracted with episodes of 'The Model Agency'. I also met with my care agency nurse for a catch up which was nice and we put together a plan for what to discuss with Professor Edwards next week and she's going to go with me to see my GP too as my relationship with him is a bit difficult at the moment.
  • Wednesday 27th June - Met a new carer this morning and she was very nice and was eager to learn about my needs and how I would like things done. We went to the Post Office and Tesco to pick up a few bits. I was quite tired after so spent the afternoon resting. My muscle spams where quite bad this evening and I had a few tonic-clonic seizures too. The spasms went on for a few hours - I'm just glad I'm seeing Professor Edwards next week. The spasms eased enough for Dad to wash my hair with a bit of the bathroom becoming a wet room and to eat my tea just before heading to bed.
  • Thursday 28th June - The weather was really nice today; enough for me to actually want to sit outside (normally the UK's 'hot' is still my 'cold'). Dad went out the watch the football so Mandy and I had an evening of watching Desperate Housewives.
  • Friday 29th June - Not much of a special day, feeling pretty low today. It was Mandy's birthday so I got her an Amazon voucher and a set of mini hand creams (Mandy goes through a lot of hand creams and hand creams always remind me of Mandy). Dad and Mandy went out to eat in the evening and I've been struggling physically which was just making me feeling even more rubbish so I just decided to head to bed. Instead of listening to Harry Potter I decided to listen to something new that would mean I'd have to concentrate more on as a form of distraction so I'm now listening to 'An Utterly Impartial History of Britain'.
  • Saturday 30th June - Didn't sleep great and had quite interrupted sleep. I got up at a decent time this morning (not helped by next doors children playing very loudly) I was quite tired when I woke up so just chilled and watched TV and had a nap. I perked up by the afternoon and at 3pm when the football came on I went upstairs and did some PostCrossing as I haven't sent any postcards in a while and its now brought my total number of sent postcards to 104! I laos used my birthday Amazon voucher and bought a few bits. In the evening I watched some bits on my laptop and did some more of my sticker-by-numbers book. I was planning on washing my hair today but it wasn't desperately needing it so I'm hoping I'll have the energy tomorrow. I also want to paint my nails tomorrow to. I'm going to get up in time for church and see how I feel.