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.]

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]

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.

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

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!