Tuesday, 26 June 2018

Video Telemetry

So I thought I'd do a blog post about video telemetry's and EEG's after my recent hospital stay. I did plan to write this whilst in hospital but I didn't get round to it and its a bit delayed as my recovery from being hospital has been slow and I've had a lot to deal with.

A video telemetery is a EEG which is also video taped and sometimes there's also a microphone too..

An EEG is a 'electroencephalogram'. Tiny metal discs are glued to the scalp and forehead; around 24 discs are applied. I also have two on my arms to record my heart rate and muscle activity due to my myoclonic seizures in my right arm.


In the video telemetry I was more-or-less constantly hooked up to the machine that and there is a camera above me. I had a little bag which all the wires on my head was pegged into and then from that box (pictured) there was a wired connected to a monitor which displayed the EEG readings. Each time I have any kind of seizure activity I have to press a button (pictured) that is almost like a bookmark on the recording and it also alerts the staff in the nurses bay so they could come an check up on me. I/the staff also had to keep a written record of my seizure activity. For the most part I was glued to my bed and the machine but I could have 15 minutes off the machine to allow me to say use the bathroom.


Each day the clinical neurophysiologist came to renew the tape and make sure the metal discs where all still intact and ask how I was getting on ask what seizure activity I'd had.


The purpose of scalp telemetry is to record on EEG (electroencephalogram) any spontaneous electrical activity of the brain. At the same time it aims to record any physical movements and sounds that may occur during your usual attacks, episodes or seizures. A wall mounted video camera; microphone and the EEG cabling are set up at the telemetry bed. We aim to record three or more of your usual attacks, episodes or seizures. The purpose of recording both the EEG and video is to establish if any electrical changes occur in the brain prior to or during any physical symptoms you may experience. The telemetry test can be helpful in:
  • Confirming a diagnosis of epilepsy or other conditions such as sleep and movement disorders.
  • Establish the epilepsy focus as part of the epilepsy surgery assessment process.
  • Recording exactly what occurs during the attack, episode or seizure.

The purpose of my 5 day admission for the video telemetry was to try and record as much seizure activity as possible both on the EEG and on the video and microphone to work out what is causing my seizures so my Professor can make a plan in terms of treatment and moving forwards with my care.

Once all the data has been collected it will then be reviewed and analysed and a report will be sent to my Professor.

I get the results of my video telemetry next week when I see Professor Edwards. I'm feeling quite anxious about the results and the knock-on effects of those results, such as prognosis. But I keep trying to stay in the moment and just hold out until my appointment on the 3rd July.


Links:
https://www.cuh.nhs.uk/neurosciences/your-treatment/video-telemetry  
http://www.bscn.org.uk/content_wide.aspx?Group=patients&Page=patient_video

Monday, 25 June 2018

One Second Every Day: June - Week 4


  • Monday 18th June - Strange start to the week settling back into routine. Watched a bit of TV and wrote out some thank you cards to people who sent me birthday gifts. Not much to the day really. Had an early night but waited up in bed until Dad came home then went off to sleep. There's elements of being in hospital that I miss that I'm struggling with as I hate being in hospital but i miss not struggling through my bad days or just simple things like when my hands go into spasm so I've emailed my Bluebird (care agency) nurse for a catch-up as I haven't seen her for a while any way; it's all been phone calls and emails lately so hopefully she'll get back to me tomorrow.
  • Tuesday 19th June - Today has just been one of those l-o-n-g day that you just want over with. Myoclonic spasms have been playing up, not just in my right arm but my whole body too and so its been 'one of those days' and a day where you're just tired and in pain and waiting for it to be over with. i've done some expenses admin work so feel up-to-date with that and got round to ordering a few things, some boring medical supplies but also some new washi tape and blank cards to have a go at some of the ideas in a book I got for my birthday called '20 washi tape cards to make'. Now it's bedtime so I can finally got to bed. Tomorrow I plan to get a bit of my bedroom tided as my mind feels better when it's done. I've also got some blogging to get round to as well. My Bluebird nurse got back to me and she's coming to see me next week so that will be good.
  • Wednesday 20th June - My carer normally comes int the morning but she got held up with her previous customer who needed a ambulance. Dad came home at lunchtime as he had a medical appointment so we had lunch together. At 3pm I had two people come from the Wellbeing Service and they did and initial assessment and asked me what support I would like and gave me some useful contacts and are going to help me with a few thing and they're going to come back in a few weeks.In the evening I went to see a play called 'Dark Harvest' - I was originally going to go with my Uncle and his girlfriend Holly as my birthday present but my Uncle wasn't feeing well so one of their friends came as we all got along. The play was really good; I have seen one in years and I had a really good time and the ending of the play was not what I expected.
  • Thursday 21st June - Another day where I was just happy for it to be over with and high levels of fatigue and subsequent pain played a big part so the day was spent dosed up on pain relief and rest. "M.E. is much more than 'just being tired'!" I think it was an accumulation of being in hospital last week then coming back and getting back in my usual routine and my body just went into crash mode.
  • Friday 22nd June - A day of lovely nothingness so I was able to rest and pace myself. The morning was a bit slow going but I set my alarm clock to give myself a lay in but not over sleep. Spent the morning chilling out and watching TV making the most of having the hose to myself. The afternoon was a bit more productive, I did a chapter of college work which means i only have the questions Dad's going to help me with at the weekend and one very short chapter left so I should be all set for me deadline on Wednesday hopefully. I also moved my pain clinic appointment to a telephone appointment which was was so much easier than having to leave the house and get patient transport etc and to be honest there was little to discuss. I'm waiting for for a meds review and I'm not going to be discharged from them until I've been handed over to the new local complex needs team so at least there will be a transition and to be honest I find the local pain team a bit wishy-washy and not specialised enough for my needs so I don't find them particularly the best if I'm honest. In the evening I watched some more TV and then Mandy and I watched Men In Black 2 which was a good watch.
  • Saturday 23d June - Set my alarm again for a lay in but not to oversleep like I have been doing. I did accidentally go back sleep for a little bit, but not for too long. I watched TV for a bit until Dad wanted the TV to watch the football so I thought I'd get on with some blogging and sorting out some Etsy shop orders and if I have the energy some more tidying in my room.
  • Sunday 24th June - Made it to church for the first time in a few weeks. Rested and watched TV most of the day and got a letter written. I've been stuck on a piece of my distance learning work so Dad sat down with me and helped me with that and I decided just to do the final chapter and finish the Module off and submit it in rather than leave it until Wednesday as my brain was on focus mode. I had a little wash and headed to bed early ready for the week ahead.

Tuesday, 19 June 2018

One Second Every Day: June - Week 3



  • Monday 11th June - Early start to the day. Woke up at 5am. Patient transport arrived just after 6am and we set off for London. The stretcher was forgotten to be put on the ambulance so the transport crew set up a duvet and my pillow on the floor just in case. We took a pit stop at Peterborough Services for the loo and for coffee. My dizziness was getting quite bad and I fainted so we made use of the makeshift bed and my blood pressure settled down and it was quite a novel way to travel though not great as I wasn't strapped in to the crew member sat in the back with me called the control centre to make sure that a stretcher would be available for my journey home. One we go into London it was nice looking at the houses and architecture. We got to St George's Hospital around 1pm. I'd typed up an brief explanation of my different illnesses and care needs and wishes and the staff where fantastic in meeting those needs. They set me up with air flow pressure relieving mattress so I don't get pressure sores. I also met with the dietician so she got some meal ideas for me and brought some oat milk up onto the ward for me. The neurophysiologist also came and took me downstairs to get plugged up the the EEG and the we went back upstairs and connected me up to the monitor next to my bed. The Dr also came just to go over my medication and do a quick physical exam as part of my admission. The staff have been great in meeting my needs. There's been a slight hiccup in the arrangements as it was my understanding that I'd be here for 5 days but the paperwork was written down for a 3 day admission so they're going to try and find out what's happening. I bought myself wifi as essential sanity keeping and made the most of it doing some blogging and watching some catch up TV. The nursing assistant at bedtime helped me into my pj's as I was getting all tangled up in the wires and I settled into bed to sleep. Its a nice quite ward and my nurse was great in trying to make things not some sensory overwhelming for me.
  • Tuesday 12th June - The business of the ward started around 8am and my meds where sorted out. I've seen the Drs on ward round and the pharmacist and the neurophysiologist. Also waiting to hear from Professor Edwards to see how long I'm going to be here for. I've kept myself busy with my laptop and my sticker-by-numbers book that I found on Amazon. I've also seen one of the hospital chaplains today which was nice. I currently have a bit of stomach ache so I'm curled up with a heat pad and my laptop. This afternoon the neurophysiologist came and did some tests but they didn't cause me to have any seizures. So far its just an anxious waiting game. I'm quite tired so I'm going to wait for my 10pm meds ge inro my pj's and put on Harry Potter and head off to sleep. I'm keeping a daily hospital journal on so that will have more info on what I've been up to.
  • Wednesday 13th June - Got the news that I'm staying in for 5 days, so until Friday. Had my first tonic-clonic seizure so hopefully that will help with the video telemetry results.
  • Thursday 14th June - 
  • Friday 15th June - Home time! FINALLY got the EEG wires off my head, though I'm left with a ton of glue in my hair. Uneventful but long journey back home taking 7 hrs! Glad to be home but shattered. Liking the quiet of my own bedroom back but missing my profiling bed and air flow mattress which really helped with the pain, especially in my hips. Also missing the help I had from the nurses and nursing assistants and making me want to push for funding for care. Going to see if I can get and update from my Bluebird nurse next week and hopefully when I see Professor Edwards next month he can put together some supporting evidence for my need for care and hopefully my care notes from my admission will be read by him too so he can see how my illnesses affect me. Have a ton of glue in my hair left over from the EEG wires so my weekend's task is to try and get rid of it; failing that I'm off to the hair dressers! Came home to literally a box of mail; some birthday mail. More about my week in hospital can be found in other blog posts; I also have lots of other blog post ideas so watch out!
  • Saturday 16th June - Slept in until just after 1pm! Woke up more tired than when I went to sleep but must have needed it. Spent most of the day resting/napping. Very wobbly on my legs after being mostly bed bound since Monday. Put on a hair mask and Dad washed my hair for me so that should hopefully get the glue out of my hair; failing that I'm off to the hairdressers! Still have some unpacking to do but I've just been to tired to do much.
  • Sunday 17th June - Father's Day aaand... my 25th birthday! Had a lay in again and then woke up and opened some of my presents. I decided to eat and not go to church. In the afternoon Dad and I watched a film together. I then did some tidying of my room and a bit more unpacking, boring I know, especially when it's your birthday but my bedroom's gotten a bit messy. I then watched TV and had a nap as I'm still feeling quite tired from being in hospital and the l-o-n-g journey home. When Mandy got home from work a Naomi friendly birthday came out which was lovely. I had a early night as my spasms where getting quite bad so Dad helped me up to bed and I finished of watching the documentary about the Suffragettes as a distraction and went to bed.



    Friday, 15 June 2018

    St George's Hospital Admission - Day 5 - En Route and Home

    Busy start to the day. Still having myoclonic spasms. Just finished packing my suitcase and making sure I haven't forgotten anything (which has brought up my normally low pulse and blood pressure to within an acceptable range). I'm now just resting with a coffee and a BBC documentary on the Suffragettes waiting for the Drs to come and do ward round as I have a few questions to ask and also for the neurophysiologist to come and take off my EEG wires. Once I've had them taken off the nursing assistant is going to take me to the bathroom for a wash (and hoping a hair wash!) and then transport is taking me home around 12pm.

    So the neurophysiologist who's been looking after me this week came and some my head in a tone of acetone to take of the electrodes and also on the electrodes stuck to my forehead and arms. 

    After that I headed off to the shower and had a nice hot shower and hair wash but I've got red sores of my arms and forehead from the acetone and electrodes so I feel a bit self conconcious of the bit red sore on the middle of my for head. Whist in the shower transport turned up early but they went off for coffee to give me time to finish getting showered, dressed and dried. It was all a bit of a mad rush from then on. The nursing assistant insisted on blow drying my hair to take off some of the dampness and then it was packing the last few things that I had out like my laptop and putting my lunch bag together and making up my water bottle and a coffee to go and taking my lunch time meds and ensuring I took my meds home with me (though I later realised that I left my oramorph behind) etc. I was getting a bit flustered and panicked wanting the ensure that I hadn't left anything behind.

    It was then onto the stretcher and I was so glad that I brought a blanket and my pillow with me and a moment of fresh air for the first time since Monday before being loaded into the ambulance. The ambulance crew wanted to get off as soon as possible due to the long journey ahead.

    As it was a different patient transport service taking me home I gave them the low-down on my seizures and where my emergency Stickman Communication © file was located etc and off we went! We took a pit stop as some services, not sure where in the country though and went to the loo and bought a coffee. The crew member sat in the back with me was nice. I listened to some music and slept most of the way home exhausted from the night before. 7 hrs later we arrived home! 

    Once home I had (literally) a box of mail waiting for me, though some of it is birthday post and also in there was some beads from the 'Warrior Beads' project (which I need to sort out and will probably write a blog post all about at some point - so many blog ideas; not enough time or energy to type!)

    I had tea when I got in and it was nice to eat something that wasn't jacket potato and salad! I then did some un packing but got tired so came and watched this morning's episode of 'Crimewatch Roadshow' in the sun room. And here I am now just typing this post and ready to head to bed.

    I still had a ton of glue in my hair so tomorrow's task is to soak my hair in the hair treatment mask that I bought at the vegan festival as it's cocoanut oil based and the neurophysiologist suggested that I use oil to get rid of the glue. I also have the rest of my unpacking to to tomorrow and to order a new wash bag as the zip on mine has broken. I also need to sort out my meds tray as it all over the place from being used in hospital as one day they where using my own meds, then it was that they can't take medication out of pharmacy trays then back to using my own meds. 

    Now for bed as I'm shattered!

    Oh, when I released on the ambulance that I had left my oramorph behind I hoped it would have been delivered this week as I ordered it last week but it hadn't so I called them and they're going to deliver it on Monday so I'm just keeping my fingers and toes crossed that I won't need it over the weekend!

    I've now migrated upstairs to bed and how lovely it is to be back in my own bedroom in the quiet, though I do miss my profiling bed and air mattress. Already I've noticed how much weaker I am from being in bed since Monday; only making the short trips to the bathroom. I can't yet manage the stairs and my legs keep buckling. Back to my physio exercises tomorrow but for now bed and sleep!

    St. George's Hospital Admission - Day 4

    1.45pm - 2.44pm

    (quite tired and symptoms are flaring so it's taking me a while to the and I'm just typing in little chucks)

    So far I've only had a cluster of myoclonic seizures and an absence seizure. I'm hoping I will have another tonic-conic seizure with a really strong aura as my one yesterday didn't have a strong aura and I want the EEG to see if there is the possibility that some of my seizures could be epileptic.

    I expressed my worry to the neurophysiologist that's been coming and seeing me each morning that I was worried that not all my seizures will be captured on the EEG and them missing a possible epileptic seizure and it leading to a misdiagnosis i.e. all my seizures are non-epileptic. I think part of my thinking and I don't want this to be taken the wrong way, but with epilepsy there's medication and treatment and hope but with non-epileptic seizures there's just management and learning to live with them and at the way my FND and M.E. is at the moment I'm struggling to just get through the day some days and my seizures control my life. There's also the prejudice, especially at my local hospital and with my GP around non-epileptic seizure and functional conditions like FND and M.E. that is also worrying me. 

    Thankfully I'm seeing my consultant Professor Edwards next month so hopefully he can look at my video telemetry and EEG results and put together a care plan and hopefully try and educate my GP and local hospital and ambulance trust a bit better on how to care for me and also sort out this palaver with the referral he made for me to go to Leeds for neuro rehab where they specialise in M.E. and FND.

    For now I just continue to wait for the seizures to come and keep myself occupied in the meantime.

    The hospital have been okay-isa with my dietary needs; getting me oat milk for my drinks but I am getting a bit bored of quorn sandwiches and plain salad every dinner time and a jacket potato with plain salad every tea time.

    The colloquial language barrier between the north and south also confuses things a bit at medication time as I say 'dinner time meds' and to them that's evening meal meds not midday meds. 

    I've way over packed on things like entertainment as I'm mostly making the most of my WiFi and my sticker-by-numbers book and I'm not getting through all the snacks i bought except the flavoured coffee sachets. 

    At lunchtime I had a little wit of a wobble/meltdown and needed my lorazepam to calm me down. I think I was just getting a bit overwhelmed and anxious about the test results and diagnosis and 'time traveling' as they call it in DBT. The other patients on the ward where really amazing. Two came to me and gave me their contact details to stay in touch and helped me to calm down and telling me it was good and okay to get upset.

    I'm hoping when the nursing assistant is free the take a little walk up an down the corridor as so far all i've down is go from my bed to the bathroom and back and my legs have been in a bit of spasm and weakness and pins and needles so I hope a little walk and stretch of my legs will help.

    (Written Friday 15th0

    Around lunchtime (5pm) my myoclonic spasms started, they eased and I was able to have my tea. I then just rested and watched TV Around 7.30pm I started getting more violent spasms in my arm and the nursing assistant put blankets rolled up around my arm as my shoulder kept dislocating/subluxing. Thing then spiralled and I stared have full body spams and I wasn't;t able to verbally communicate. I  was in agony and at one point I'd had enough of life and seizures apparently. My favourite nurse was one and was great comforting me and getting me comfortable getting me comfortable in bed. The on call Dr came (same one as before) but he didn't want to give me any medication for me seizures and spasms. By this point it was gone midnight. One my lovely nurse and a nursing assistant got me comfortable and settled in bed I just put on a film and nodded of eventually exhausted for all the hours spasming and my body going into full spam. 

    Wednesday, 13 June 2018

    St George's Hospital Admission - Day 3

    3.24pm

    Good news! I'm going to be here until Friday, now the wait for me to have a tonic seizure or two or three.

    Seen the neurophysiologist again briefly who gave me the news and she comes every day to restart to EEG tape.

    Also seen the Dr in ward round and there's the possibility of putting a canna in me just in case I go into status seizures so they can give me IV Diazepam and other medications but so far that hasn't happened. My nurse yesterday made a request for me to have a cannula but the Dr on didn't want to unnecessarily cannulate me due to the risks like sepsis so I just need to wait and see if they'll cannulate me today or not. I've asked the charge nurse and he's going to chase it up.

    So far today I've had a quick wash and got into my day clothes and watched some TV on my laptop and i'm starting to get into the routine of things.

    The dietician always appears at the right time and she's getting me some more oat milk as I'm drinking plenty of coffee. I'm using some little flavoured coffee sachets that Mandy got me so thats a nice little treat.

    Having an electric bed is amazing and it would be so great to have one at home, especially when I'm having my poorly days. The are mattress is also great and helping with my pain and keeping those pesky bed sores at bay.

    I love having the student nurses to chat to and also o help them learn about my illnesses.

    I've been quite tired today so this afternoon I've had a nap with some music.

    I'm so glad that I've brough my ear defenders as it makes things a bit quieter and calmer for me and I've just been keeping my sunglasses on.

    8.16pm

    So I've had my first tonic-clonic seizure and they gave my buccal midazlolam. When I cam out the seizure I was in rigid spasm and I'm still in spam now; currently waiting for the Dr to come and see me. I got given some oramorph for the pain when I was more with it. Because I was in spasm I had to be fed but the student nurse and she was so lovely and I also needed the student nurse and nursing assistant had to use a slide sheet to move me up the bed. It was difficult as I felt like my illness took so much independence away from me. 

    One of my favourite nurses is on tonight which is a bonus.

    I've also developed a headache so I'm just in the process in being dispensed some co-codamol and see if that helps if not Sumatriptan to the rescue!

    As well as the spasms which as super painful, not fun and annoying and difficult to do things like type and drink I'm also havingmore myoclonic seizures, probably from the pain.

    I'd like to do my sticker by numbers book but my hands are a but uncooperative so I'm just watching some TV, 

    11.36pm

    Shattered and ready for sleep. Still is spasm and just had some more oramorph. My nurse is wonderful and very understanding of how much pain and how unfordable I am, especially after what the on call Dr said which I'll get to in the next sentence. 

    So the on call Dr came and was understanding of how no nice my situation was but he didn't want to give me any medication like diazepam which may reduce my seizure activity which would hider the reason why I'm here which is to capture as many seizures as possible. He said give it a couple of hours and he'll come see me if there's no change. My nurse has helped me change position and is going to keep me topped up with pain relief like she's just given me the ira-morph just now and I'm hoping my night meds will also kick in and help too. I'm a little upset that the Dr didn't do anything or my spasms as it's my full body, painful and annoying and been over 4 hrs now but I can see where he's coming from.

    My seizure earlier didn't;t have as strong an aura as I've had in the past so I'm hoping I'm might have one of those tomorrow or Friday.

    Now for Stephen Fry to read me Harry Potter and try and sleep.

    Tuesday, 12 June 2018

    St George's Hospital Admission - Day 2

    The business of the day started around 8am. I step well and the air mattress is really comfortable and helping with my hip pain which is a bonus.

    The pharmacist came as the nurses was querying about my dose tray as they don't know what's what in is and also where to store it as it has my zomorph (slow release morphine) tablets in it.

    My nurse today has made my bed area seizure proof putting padding on the bed sides and clearing access so they can reach things like the code red button, suction, O2 etc.

    The neurophysiologist has also come to see me and she's going to come and do a strobe light test at some point to see if there's any effect on my seizures and brain activity.

    I've kept myself occupied with my blog, catch-up TV and a fab sticker-by-numbers book that I found on Amazon.


    Just in the middle of typing this I've heard back from my nurse that this will be a 48hr video telemetry as they can;t find the paperwork that requested a 5 day admission so I'm feeling a bit down and disappointed as Professor Edwards wanted to capture a couple of tonic-clonic seizures and that's unlikely to happen in 48hrs and its taken 11 months to get this admission so it's possible that I may have to come back. The nurse said that she tried to fight my corner and I've asked to speak with the Drs to express my worries and need for a longer admission.

    The staff continue to be amazing in meeting my needs and helping me out and often it's the small things like answering the call bell quickly and getting my meds to me on time and not waiting too long for pain relief etc.

    I've just had a little meltdown getting upset over the change in the admission and my two nurses where lovely reassuring me and empathising with my situation.

    3.40pm UPDATE

    Seen the neurophysiologist and we did a strobe test and a deep breathing test but no seizures.

    Still waiting to see the registrar to discuss how long I'll be here for. For now I'm just going to watch '24 hrs in Police Custody' and do some more sticker-by-numbers.

    One of the chaplains also came to see me after I called them this morning and we had a brief chat and prayer and read a few verses of the bible which was comforting, especially as I have no visitors from home.

    I had a slight wobble/meltdown as I would like to stay until Friday by which I'll hopefully have had 1 or 2 tonic-clonic seizures and I didn't want them to take the EEG wires off in the morning and have a less than 48 hr recording with no TC seizure for Professor Edwards to make a proper diagnosis and plan. The staff was very reassuring and empathetic and have been trying to fight my corner for me to stay and th neurophysiologist also said that she was me to stay for 5 days too. Part of the issue is the referral request for a 5 day admission can't be found so they're going on the referral request for a 48 hr video telemetry.

    9pm UPDATE

    Professor Edwards, my neurologist, is going to come and see me to make the decision on how long I'll be here for. So far I haven't had any tonic-clonic seizures.

    I've got stomach ache so currently curled up with my heat pad and my laptop.

    With regards to transport rather than use transport from home I'll be taken home by the transport team here so I don't need to worry about them coming to pick me up tomorrow and having to go back home without me because it's been decided I'm stating in longer.

    I'm feeling quite tired so I'm just waiting for my 10om meds and someone to help me into my pj's then I think I'll put on some Harry Potter and go to sleep.

    One Second Every Day: June - Week 2


    • Monday 4th June - Bit of a dull day. Made some birthday cards as have a few birthday's coming up. The evening wasn't so great asI had an hour and half long seizure. Thankfully Dad and Mandy was at home and Dad stayed by my side the whole time and gave me assistance where I needed it. Once things had settled down, though I was still a bit twitchy I went and put my pj's on and Dad helped me upstairs and I got settled in bed and went to sleep as I was exhausted.
    • Tuesday 5th June - I stayed at home today as I was in a lot of pain and exhausted from yesterday's seizure. I mostly rested and watched TV and I made Dad's Father's Day card. I also phoned St. George's Hospital's Neuro Services Manager as I was concerned as I have an appointment with Professor Edwards at the beginning of next month and I still hadn't received my appointment for my video telemetry test. This afternoon I got a phone call to say there had been a cancellation and could I come in next week for my video telemetry  It's a 5 day admission so there was a bit of madness making phone calls cancelling next weeks appointments and getting extra medication ordered and I also to get an extension on my distance learning work. I feel all bit of a flutter as I've been wanting this video telemetry appointment since July last year and now I feel quite anxious at the though of being in hospital in London for a whole week and trying to get organised like making sure I have a profiling bed and they are aware of my care needs and assistance etc and starting to think about what to pack. I also called patient transport to make sure there was enough notice and when the admissions co-ordinator called me I explained I needed to know when I'll be admitted to book patient transport so I'm waiting for her to call me back tomorrow and I'm going to mention to her tomorrow my care needs so they're prepared for me. I think part of my anxiety is my sure poor care experiences of being admitted to my local hospital, but hopefully St. George's will be better equipped and there will be healthcare assistance on hand to help me where needed and it will be a specialist neurology ward too. Update, just got off the phone from the Neurology Services Manager and put across my care needs and wishes and he's going to speak to the manager of the ward and see what can be done. Just going to rest up for the rest of the day and hopefully get the final episode of Pompeii with Dad and Mandy that we was meant to watch last night if depending on if Dad and Mandy are going to their house group tonight if not, if they are we'll have to wait until tomorrow to watch it. I mighta so try and get some college work done if I have the brain power.
    • Wednesday 6th June - Not a very interesting day. Overslept this morning and woke up to the doorbell with my carer arriving. Was quite tired when she left so spent the rest of the day resting and making the most of having no plans. In the afternoon I had a telephone appointment with the Pain Clinic to do a medication review but the nurse prescriber has passed my case onto one of her colleagues, a doctor who can deal with more complex cases so need to wait for an appointment for that. Aslos did more organising getting ready for next week. 
    • Thursday 7th June - Bit of a dull fatigued day. Finally got my letter from St. George's Hospital and called up the ward and ad got and admission time so book patient transport to get me down there. Did more packing; feeling quite anxious; hoping I'll remember to pack everything I need and had plenty of things to keep me occupied and clothing that will be suitable to get on and off which having electrodes stick to my head. My sticker-by-number book arrived and so did Season 2 of Chicago Med. I'm expecting my mandala dot-to-dot book to arrive tomorrow so that's a few things to keep the boredom at bay. Watched an episode of Desperate Housewives with Mandy; now its time for bed as have group therapy in the morning.
    • Friday 8th June - Not a very exciting morning. In the afternoon I had an appointment at the salon for a massage and a facial. I find massage really helps me manage my pain and unknots my muscles and helps my stress levels which in tern helps with pain. My mandala dot-to-dot book arrived and its certainly going to keep my busy next week as there's over 10,000 dots to connect! (Must remember to take my magnifier!) Going to spend the rest of the afternoon watching TV and resting and maybe do some more packing. Feeling very anxious about next week, especially being in a bay as I'm worried it will make my symptoms worse, especially my M.E.
    • Saturday 9th June - Lazy morning having a lay in. Aied to get up at a specific time, 11am, rather than waking up when my body is ready like normal but didn't end up getting out of bed until about 11.30/11.40am. I then did my usual morning (restful) routine of sorting my days meds out, watching TV getting breakfast etc. Mid-afternoon Mandy and I went to Tesco to pick up some things for next week - magazine, puzzle books, ear plugs, travel razor, snacks etc. I feel like I've way over packed but I want to ensure I have enough to keep me occupied and having enough clothing and other bits and bobs. In the evening we all sat down and watched 'The Theory of Everything', a film I've been wanting to watch for ages. It was very moving and really insightful into the easy life and work of Stephen Hawking. His resilience towards his illness also shone through, like how he dealt with it through humour, like we do at home with my illnesses and his sheer determination to carry on when his body was failing him. Towards the end of the evening my headache was turning into a migraine so when I went to bed I dosed up on Sumatriptan, pain relief and anti-sickness meds and got myself a wet flannel for my forehead. I was almost a breaking point with tears with the pain but eventually I managed to get off to sleep. Its now 5am on the Sunday morning, I've just woke up and my neuropathic pain flaring up so I thought I'd fill in yesterday's post as I couldn't due to my migraine.
    • Sunday 10th June - Had a rest day today as have an early start in the morning. Called up the ward to check my bed is still free and called patient transport to get an ETA for my pick up. Had lay in and watched a bit of TV, also did some letter writing out in the garden and the birds where pretty sociable. Mandy also went through my suitcase with me so hopefully I'm all set for next week.


    Monday, 11 June 2018

    St. George's Hospital Admission - Day 1

    So I'm here! I woke up at 5am and patient transport arrived around 6am. We had a pit stop at Peterborough Services for the loo and coffee and we got here around 1pm. Travel was a bit problematic as they forgot the stretcher so the transport crew set up a duvet on the floor of the ambulance and put my pillow there and got a blanket out. For part of the journey I traveled laid on the floor like this but they're going to ensure that I have a stretcher going home.

    One of the first things that got done when i arrived was speak with the dietician who sorted out my dietary needs so now as I typed I have a nice flavoured coffee with oat milk and I've had a Naomi friendly tea.

    Next was setting up the EEG wires which required a trip downstairs to neurophysiology so now i'm all plugged up and have a video camera watching me. I'll do a pot all about video telemetry tests and EEG's.

    I've also been put on a air moving pressure relieving mattress as I'm glued to my bed and to prevent pressure sores as my skin is more fragile due to my hypermobility.

    I've purchased wifi for essential sanity keeping and so I can keep up with my blogging and watch catch-up TV etc.

    So far the staff have been great at meeting my needs and the bay I'm on isn't as noisy as I expected though I'm keeping my sunglasses on but thankfully they don't have florescent lighting.

    I've also met with the Dr who went through my medication, medical history, list of diagnosis', neuro exam, heart and chest listen etc.

    There's been a slight hiccup in the arrangements which has unsettled me a bit. I was told and expecting to be here until Friday but when I went to get my EEG wires fitted I was put down as only being here until Wednesday and another patient is due to be coming after me on Wednesday. They're going to check with Professor Edwards whether he wants me here longer but I'm worried that 48 hrs won't be long enough for me to record a tonic-clonic seizure and there's a possibility that I may need to come back again for another video telemetry admission so I'm really hoping that I will be staying for the 5 days but only time will tell. I'm trying not to worry too much and feel unsettled. I'll speak with Dad later and let him know how I am and the change in the plan. 

    For now I'm going to make the most in my internet and watch some catch-up TV on my laptop and try and distract myself and keep myself in the hear and now and use my DBT skills.

    Sunday, 10 June 2018

    All set and ready to go!

    Last Tuesday (5th June) I got 'the call' that i'd been waiting for for almost a year. A call to saty that I would be admitted to St. Georges Hospital in London for my video telemetry test. That morning I'd called the Neurology Services Manager to say that I had an appointment with Professor Edwards at the beginning of July and I still hadn't had my video telemetry which I needed the result of for my appointment. He said leave with him and that afternoon I received a called from the Admissions co-ordinator to say that there had been a cancellation and could I come in last minute on Monday 11th. Not wanting to turn down the slot I agreed. I was all a bit made from that point. Cancelling next week's appointments, trying to find out when I'd be admitted so I can book patient transport, starting to pack my bags, asking on social media advice on what to pack for a planned hospital admission etc.

    Well now I'm all packed and ready to go. I'm feeling VERY anxious for numerous reasons... I'm anxious about being in hospital after bad experiences being in hospital locally but I'm hoping that being on a specialist neurology ward will be better than my experiences of say being on an acute admissions ward; I'm anxious about being in a bay with other patients, again from previous bad experiences, I'm also worried about it flaring up my anxiety and M.E.; I'm worried in case i've forgotten to pick everything despite Mandy going though my suitcase with me; I'm not looking forward to the early start tomorrow; I'm not quite sure what to expect and I'm hoping that my clothing will be suitable as I have no button-up clothing as they suggested I bring; I'm anxious about catering for my dietary needs, though with Mandy working in hospital catering she keeps reassuring me that they will be able to find me something; I'm anxious about being away from home. So many anxieties. My care co-ordinator just told me to take things day by day and when I arrived explain then my care needs and wishes rather than keep calling them in my anxiety to make sure they are prepared for me. She also said that I can call her during the week if I'm needing some support which was nice and much appreciated. I've also typed up a care needs and wishes piece of paper to put in my file so whoever is looking after me can see it and be aware of what support I need so they can try and support me as best as possible to make the week as best as possible as to look at me its not always that obvious that I need help and support with certain things.

    Mandy and I have gone through my luggage so hopefully I now have everything I need; just a few things left to pack in the morning like chargers and my pillow and I'm pretty sure I have plenty to keep me occupied. I feel like I've way over packed but I've got plenty of spares like extra t-shirts etc. And some thing like my food items will be gone by Friday.

    I've called the ward and my bed is still free and I check about clothing and t-shirts should be fine and I'm allowed bedding so there wasn't;t need to take my onesie thank goodness as tat one less big item to take. I've also called patient transport who are going to pick me up around 6.25am (though I'm going to be ready for 6am) and my alarm is set for 5am (*fingers crossed* I wake up).

    I'm going to pay for wi-fi as it see it as a sanity keeping essential so I'm planning on writing so blog posts such as what is a video telemetry test and keep you posted on how the week goes and do my One Second Every Day journal etc.

    Tuesday, 5 June 2018

    One Second Every Day: June - Week 1


    • Friday 1st June - Went to group therapy this morning. Spent a few hours in the garden sat at the table writing some letters; managed to write 4 letters before I got tired so I packed up and came inside to watch some TV. Dad and Mandy are now home so feeling relieved. Discovered a new boxset on Channel 4 called 'Ackley Bridge' which is good so far (currently on episode 2 and typing this in the adverts). Also ordered myself a second pair of my favourite jeans whist they're still in stock and got them in black too so I now own 2 blue pairs, a grey pair and a black pair. Also got myself some ballet pumps which I desperately needed so I can wear my harem trousers when I go out. In the evening Dad, Mandy and I watched the first episode of a documentary about Pompeii that was really interesting.
    • Saturday 2nd June - Had a long lay in this morning. Got up and been watching TV. Having a bad pain day, its not like acute pain but just generalised background pain that's just 'there' and I'm quite sure what to do with myself. My concentration isn't great, but Ackley Bridge isn't too hard to focus on. I've tried sitting and laying in all sorts of positions, even my physio ball and not much is helping with the pain. Unfortunatly with FND: "Chronic pain occurs when signals of pain remain active in the nervous system for weeks, months, or even years. This can take both a physical and emotional toll on a person. This type of pain does not always respond to medication." - FND Hope  I'm just hoping the pain relief helps and I can get comfortable. When the football came on I went and sat myself in the sunroom and rather than pick my laptop up to watch more TV I've decided to get on with a bit of college work. I realised that I'd misinterpreted a bunch of questions so after a lot of copying and pasting I put the right answers to the right questions but the questions I misinterpreted I struggled to understand and answer so I've asked Dad to sit with me at some point and go over. I'm now feeling a bit brain fogged for doing a load of college work so I'm going to find a new boxset to watch as I've finished Ackley Bridge now.
    • Sunday 3rd June - Didn't sleep well. Woke up at 8.30am to be ready to go to church but accidentally went back to sleep and wok up at 9.44am - oops! There wasn't enough time to make it to church so decided to stay at home. Dad wasn't feeling well either so he didn't go to his church either. I spent the morning putting together a birthday wish list as my request for a typewriter was turned down; Dad do his research but found it hard to found one suitable and wasn't quite sure where I would be able to keep it as i don't have a desk (though I'd love one) and wasn't sure if I'd be able to find ribbons etc for it when I run out so I made an alternative wish list instead. Dad and I are now just about to sit down and watch some TV together. After a few episodes of 'Can't Pay? We'll Take It Away' with Dad I did a few bits and bobs. I then snuggled up in bed early and watched a few episodes of Chicago Med. Thankfully my pain was better today.



    My gratitude list list for this week is:
    • Thankful for the sunshine and being well enough to sit outside
    • Having the money to buy new jeans and shoes
    • Having access to pain relief
    • Spending tome with Dad watching TV
    • Having a better pain day on Sunday



    Friday, 1 June 2018

    One Second Every Day - May 2018: Week 5


    • Monday 28th May - Woke up around 10am to give myself a bit of a lay in but so I'm not too tired getting up tomorrow. Sorted out my meds and to my annoyance my clonazapam (seizure meds) was missing, queue phone call to the pharmacy and another job for tomorrow - grr! I have put Shellac™ on my nails for a while due to fatigue and brain fog and I've missed it so I summed all the spoons I had an did my nails. It wasn't;t perfect but it was an achievement and Dad was very good at helping me choose a colour and style! I then rested after I cleared up my nail equipment and spent the rest of the afternoon and evening laid watching TV, though my neuropathic pain and in my foot and restless legs was driving me a bit stir crazy. After tea Dad washed my hair and then we washed Springwatch together (the three of us). Part way through I had a half hour long seizure episode which I had around 5/6 tonic-clonic seizures and in-between unconscious full-body myoclonic seizures. I came round but was still having myoclonic seizures (and and still spasming now) I made it upstairs to bed and got into my pj's. I wanted to sleep but the spasming was stopping me from nodding of so I thought I rest and do a bit of distraction. Hopefully it will wear of soon so I can get some sleep.
    • Tuesday 29th May - Today has been hugely challenging and difficult. Found it hard to put my thoughts down and unwind and instead I just find myself getting more tangled up. Anxious about Dad and Mandy going away tomorrow, thankfully the pharmacy have delivered my clonazepam so I've got that back in my system, I'm just hoping that I will be okay over the next few days. I have carers popping in to check in on me and to give me a hand with anything. Fingers crossed I can enjoy the peace and quiet and there will be nothing going wrong like last time they went away. 
    • Wednesday 30th May - Busy morning out with my carer. Tesco's took longer than expected but the pharmacist was really helpful when I went to get advice for my sore throat (I'm currently loosing my voice) and sinus pain. We then went to Specsavers to pick up my glasses. On the way back to the car I had an upper body myoclonic seizure attack which lasted around 15/20 minutes and my carers had to guide me back to the car as I was a bit out of it and incase I was to have a tonic-clonic seizure. A few letters and a parcel then went off to the post office. I spent the afternoon on the sofa where I was safest. In the evening another carer came round as my parents are away. I went into a prolonged status seizure episode and my carer eventually called 999. The paramedics came and gave me some IV diazepam to bring me out the seizures but I was still spasming so I suggested entonox which usually does the trick and it worked. They did their obs and really wanted me to go to A&E but I explained my previous poor care and bad experiences so they left me at home and I glued myself to the sofa and put on Harry Potter as a distraction. Later my evening carer called me just to check I was okay and I got to bed and went straight off to sleep.
    • Thursday 31st May - Nothing special today. Difficult start to the day; in a lot of pain and very tired. I just hope that the situation with A&E gets sorted out soon. I didn't do much during the day, just rested, did a bit of college work and watched TV. I went to check on my wildflower seeds which I was please to see have started to row. I had my carer come in the evening and I had a nice shower and my hair washed and then got my tea. I washed TV for the rest of the evening and went to bed. 



    My gratitude list list for this week is:
    • Having the skills to Shellac™ my nails
    • Dad washing my hair
    • Dad being there through my seizure and helping me when I came round
    • Access to medication for free
    • My carers
    • Brilliant paramedics who I'm going to contact EMAS PALS and say how great they was with me
    • Nature and my lovely wildflower seeds
    • My pen pals
    • Shower and hair washes

    One Second Every Day - July: Week 2

    Monday 8th July I had a 15-ish minute seizure with my carer today and she's daily new to working in care and she's only just d...