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.








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