Wednesday, 20 February 2019

National Love your Pet Day 2019

Today is 'National Love Your Pet Day' (according to the internet). So I thought I'd send you some love from my guinea pig Flop.

Flop loves his food and having a mad run around his cage, especially after you've cleaned him out, he's all very chatty and will run up to the cage door when you go into the room and he loves cuddles and when you go in his cage to feed him will nudge your hand for a stroke. The only thing he doesn't like is his claws being clipped.

We used to look after Flop and his brother Flip (though Flip is no longer with us) when his owners went away. His owners then got a dog who wasn't too keen on Flop so we got asked if we wanted to have him on a permeant basis.
When we first got him if you put him on the floor he'd just stand there; no he'll happily run around and he's getting more adventurous each day.

Monday, 18 February 2019

One Second Every Day - February Week 3

Monday 11th February

Chilled out this morning trying to get myself into day mode. Flop and I had morning cuddles and he was very chatty.
At 12.30pm my carer came and then at 4pm my support workers from L&H came.
I was quite tired after so I just chilled out. I got my packed lunch and bag ready for London tomorrow and had an early night.

Tuesday 12th February

Up at 8am, so not too early. Ensured I had everything with me.
TASL (patient transport) came at 10.30am. Uneventful journey there. Stop off at Peterborough for the loo and diet coke and coffee.
Was a bit late arriving at UCLH but it was all okay. I was expecting to have a bladder pressure scan but instead it was an ultrasound. I got a bit panicky but she was lovely and understanding of my PTSD and just did a scan of my abdomen which the results was all okay.
The TASL crew was waiting when I came out. Luckily I one tot get a coffee on the way out and my gastro dr called me whist I was getting my coffee. She called me yesterday and she said she's call me to give me a prescription today so she caught me just in time. We sat in the main atrium and waited for her to come. Prescription in hand we didn't need to got to the hospital pharmacy so we could just head off home.
I had a few tonic-clonic seizures whilst we was driving out of London and my myoclonic seizures carried on for quite a while so I took some diazepam (which I rarely take; this was the fist I'd had to take it this year) to calm things down.
I slept/dozed most of the way back home listening to episodes of Bones except for a stop at Peterborough again for the loo and I got a free hot chocolate using up my Costa points.
Home and then straight to bed.

Wednesday 13th February

Struggled to get up this morning.
The lady from the Red Cross came round this morning for a chat.
I then got busy with sorting things out on my laptop and making phonically that I forgot about the time.
At 2.15pm my carer came for ½ an hour. We took my prescription that I got yesterday to the GP surgery, they hadn't;t received the email about my ECG yet so I need to call back in a day or two. We then went to the post office to post a stack of letters and to buy stamps.
Back home I got a snack and had a rest.
I've spent the evening typing some replies to letters. I've put one letter together and the rest I'll do tomorrow.
I'm now settled in bed and hope to get off to sleep soon as part of my bedtime routine.

Thursday 14th February 

Had my carer come at 11.30am this morning for a few hours. Had several seizures and it was a new carer but she seemed to mange things okay.
I was quite tired after so I watched some TV on the sofa and had something to eat and then migrated upstairs.
I was planning of typing some more letters but fatigue and M.E. had other ideas so been laid flat in bed watching episodes of Bones in a dime lit bedroom; even the thought of the smell of my aromatherapy diffuser feels too much but I might still put it on at bedtime.
I have Shetland and Silent Witness to catch up on so I may watch one of them instead before heading to bed (it's currently 8.37pm).
Hopefully I will sleep well tonight.

Friday 15th February

Had a quiet day in today.
Cleaned Flop out. Mandy accidentally bout straw bedding instead of wood shavings she he's a little bit curious about that.
Had an afternoon sleep. Something I've not been doing as much (though still having 'neurological rests' every day) since I've been starting my supplements prescribed by Dr Sally.
I then had a bath and having my bath lift is making life a lot easier.
This evening we watched a really good film called the "The Guernsey Literary and Potato Peel Pie Society".
I then headed to bed and trying hard with my sleep routine I put on an audiobook instead of a TV programme and I  nodded of pretty quick.

Saturday 16th February

Got up okay-ish this morning. Did my usual morning routine and it now just gone 12pm and I'm dressed already! 
I've been meaning to do my nails for a while and though I got distracted for a while I finally got round to doing them I've used and Oxblood colour with copper glitter tips.
This evening I've been feeling quite dizzy and briefly fainted so I just laid in bed with my laptop.

Sunday 17th February

This morning I practised y make-up skills and I made it out to church today!
I was exhausted when I got home so had a lay down and then I got something to eat.
This afternoon/evening I spent time on my laptop setting up a Facebook group called 'Chronic Pen Pals'.
I'm now shattered and ready to bed and I'm sticking to my bed time and listening to an audiobook.
I've not waned to jinx it but this week I have finally managed to take ALL of my medication/supplements on time (more or less, some doses have been a little delayed but I'm getting there; I'm most please about remembering my empty stomach tablets which I struggle to remember to set the timer on my watch for to take and hour after eating). Hopefully next week will be even better. Now to take my 10pm meds (it's 10.08pm), finish this post, publish it, take off my make-up, put on my aromatherapy diffuser, and listen to an audiobook. 
(Actually, I'll finish this post  off tomorrow and head to bed).

Video description:
Monday: Flop (who has a black, tan and white coat) sat on my lap being stroked
Tuesday: View of a clinic room and an ultrasound machine
Wednesday: A letter coming out of the printer
Thursday A cup of herbal tea being stirred
Friday: Flop greeting me at his open cage door
Saturday: My tablet box time going from 9:59am to 10am
Sunday: A colourful eyeshadow palette and me holding a make up brush 

Monday, 11 February 2019

One Second Every Day - February Week 1 & 2

Friday 1st February

Didn't sleep well - I struggled to get off to sleep but Dr Sally is going to look into any possible remedies to help me, though I'm trying my hardest to get into a bedtime routine. Then I was up in the early hours with really bad stomach pain and cramping and I was in too much pain to sleep so I just put on Amazon Prime.
Busy afternoon. 
My OT (Occupational Therapists) came to deliver and fit my pillow raiser which is already a massive help. I did just have a rail next to my bed to pull myself up but it was strain on my shoulders and on my bad days I struggled to have the strength to sit myself up.
Then at 2pm I had my support workers from L&H come and visit me and update paperwork but my brain then decide it didn't want to do paperwork and instead have a seizure. Thankfully Mandy was home so she was able to help me up to bed and I had a nap.
Spent the rest of the evening on my bed resting and watching TV except for tea time.
Got off to sleep well. Woke up in the early hours to use the bathroom and found myself with my glasses still on the TV on and still in my dressing gown on top of my duvet so I must of nodded off pretty quick.

Saturday 2nd February

Struggled to get up this morning as was pretty tired but needed my 10am meds and breakfast to go with it.
I've spent most of the day on my bed. After breakfast I put Bones on to watch but nodded off. My newest pj purchase have become my current favourite pj's - they're long sleeved and brushed cotton which a zebra print.
I've just been taking it easy today and only got dressed at lunch (2pm). I did have lunch downstairs and because I had rested I summoned the energy to clean Flop as he really needed it and he had fun running around whilst I did it.
I'm now back on my bed doing some bits on my laptop. 
This evening Dad, Mandy and I watched the second half of Alien 2 that we didn't get to watch because of my seizures.

Sunday 3rd February

I did plan on going to church today but instead, and without warning, my brain decided it would be a good idea to fall off the barstool and have a round of seizures. Thankfully Dad and Mandy heard the thud just as they was leaving for their church and stayed until I cam round and then Dad helped me upstairs to bed where I slept for several hours.
I then sat in bed for a while and watched Bones on my laptop.
After having something to eat I sat and made some cards from bits I've received in letters and wrote a round of PostCrossing postcards. I was exhausted but I pushed myself to tidy up.
I wasn't too hungry but I needed to have some wheat/gluten food so I had a bagel and and Dad made me a coffee and I settled back on my bed.
I'm having an early night as I'm exhausted but it's nice to keep and have a tidy bedroom.

Monday 4th February

Had my carers (one was shadowing) for a couple of hours. The new shadowing carer was lovely and she's a trained hair dresser so can braid hair - bonus!
Mid getting dressed I had a 10 minute absence seizure with continual myoclonic seizures and then about 5 mins later whilst my carer was blowdrying my hair I had a tonic-clonic seizure.
I spent the rest of the day doing some letter writing and just resting as I feeling extra exhausted at the moment because I'm having a lot more seizures, fainting episodes and falls.

Tuesday 5th February

Not feeling well today so had a pj and curl up on the sofa day. Had a ½ hr Bluebird call so had a quick shower and got dressed and something to eat to feel a bit more human.
Spent the day on the sofa.
The evening was difficult. I had on/off absence seizure and continuous myoclonic seizures.

Wednesday 6th February

Hectic day. Getting ready in the morning the running errands with my carer this afternoon and accidentally buying makeup! 
Then home for a rest for a few hours before heading out to Orchard Barn for a 'Pamper and Relaxation Evening' with Mandy.
Had a lovely evening. It was nice to have some girly time with Mandy.
First, we had an aromatherapy workshop learning about aromatherapy and blending up our own oil.
Then we had a makeup tutorial and I was the model.
After that I had a back massage which was much needed.
The evening ended with a relaxation, mediation and breathing exercises workshop.
I'm in a lot of pain and my symptoms are flaring up so I'm just going to try hard to distract myself and I hope I nod off soon.

Thursday 7th February

Had a quiet day to rest for going to London tomorrow. My OT can at lunchtime with the bath lift but it ran out of battery so she came back after a few hours so it could charge up a bit and so she can show me how it works and so I can give it a go.
In the evening Mandy and I watched the 3rd Alien film and I got myself ready for going to UCLH tomorrow.

Friday 8th February

Up early, but not too early (7am). Got stress like I normally do just in case I forgot something. I had a patient transport crew come from Peterborough and they was a bit late but it was okay as we got to UCLH on time.
Had a seizure on the way there; we stopped off at Peterborough services for the loo and to get my diet coke and gelatine free sweets fix.
Clinic was running late but the Dr I saw was lovely and she has EDS herself and we both had diet coke and agreed that it's a good cure for nausea and dysautonomia. 
(I'll do a separate post about the appointment.)
Mid gastro appt my gastro symptoms decided to flare up - talk about irony.
Had bloods and a ECG.
Nausea, pain and a migraine started up just as I was finishing up and ready to go home so took some meds and thankfully this time I packed a heat wrap.
Uneventful journey home. Got home about 9.30pm-ish.
I'm exhausted but I can't sleep.

Saturday 9th February

Really struggling today with a cold/viral infection that comes with PEM for me.
Distracted myself with typing some replies to letters and I managed to get two letters put together. The rest I can have fun doing another day. (I type the letters in text boxes to fit inside the card and then I print it and cut out the text boxes and stick it inside the card and then I add little bits like quote cards, mail tags and puzzle book pages etc and no two letters are ever the same which I love making).
Despite the exhaustion I managed to get a wash this afternoon which made me feel a bit more human.
This evening I had a seizure so Dad helped me upstairs and now I'm just laid  up in bed ready to put my pj's and and settled down once I've finished this sentence.

Sunday 10th February

Made it to church this morning after not being able to go for several weeks.
I came home and put together a couple of letters and organised my Instagram, I'm now just doing some blogging and I've just realised the time and now I need to get my meds and something to eat and I just want to curl up on the sofa and have a rest.
Had a rest on the sofa and then Dad wanted the TV so I went upstairs and sat on my bed and started to type up a reply to a letter form one of my pen pals. I also made some word searches to photocopy and put into letters.
I watched some YouTube videos and then started to get ready for bed to try and get myself into a better sleep routine.

Video description
Friday: Time-lapse video of the head of my bed elevating 
Saturday: Sliding open my tablet box
Sunday: Water running into the bath
Monday: Cup of tea and my laptop screen
Tuesday: dropping a Bravery Bead into a glass jar
Wednesday: [noisy background] video of my aromatherapy oil bottle
Thursday: DVD going into to DVD player
Friday: Elevator doors opening
Saturday: Cutting paper with a guillotine 
Sunday: My view in church

Sunday, 10 February 2019

UCLH Gastro appointment 8.2.19

So last Friday (8th Feb) I went to a follow up appointment with the gastro team at UCLH. This time I saw a different Dr. She was lovely and easy to talk to; she has EDS herself and we both had Diet Coke and we both agreed its a good cure for nausea and dysautonomia.

Based on my symptoms she diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome). She explained to me that my gastro symptoms where a mixture of all of my different illnesses - connective tissue problems causing my guts to be stretchier and move much slower; FND not sending messages to my digestive system properly; dysautonomia and POTS and M.E. too as well as the effects some of my medication.

She's going to refer me to pain management to look at options to manage my chronic pain (caused b all my different illness) as it would be impossible to function without medication but to look past help in managing pain and different pain management options and medication.

Having some basic medical knowledge both from when I was studying nursing, but also being a expert by experience (aka being a person living with a disability) she spoke to me in a clinal way and I felt that she treated me at an equal level, unlike some Drs who look down on you because you're the patient and they're the Dr.

She was really happy with what I'm doing with seeing Dr Sally (private Integrative Medicine Dr - I keep meaning to make a post about that!) as one of the things Dr Sally is working on is improving my gut health and intestinal permeability which in turn can help with things like improving my immune system. Anyway, the Dr I saw complemented me on how nice it was to meet such a proactive patient.

In my last appointment I was started on a medication called Prucalopride which helps my digestive system to work more normally; my GP was supposed to do a follow up ECG as it can affect the long QT heart rhythm, but my GP who's as helpful as a chocolate teapot failed to do this so I had a ECG after my appointment. On the way home I got a call from her to sat that I had developed long QT syndrome fro the medication so she's going to switch me onto an alternative which will do a similar job as the Prucalopride but will also allow my pain meds to work but stop them affecting my digestive system. She also said that some of my other medications can affect my long QT but I said I've been on them a while and I've had other ECG since and nothing has been flagged up. As well as my ECG I also has some bloods as my vomiting can affect my potassium and iron levels (though I'm on supplements for that so they should come back normal) and she redid my coeliac blood test and she's going to call me on Monday. She also suggested the idea of having an updated endoscopy.

For now the main things in terms of managing my gastro issue are increasing my salt intake and having smaller meals (which I'm already doing) which can help with the POTS, avoiding trigger foods, keeping up with my Low FODMAP diet. There's also a few other things which she's going to write and requesting my GP to do (and at least I now have my independent advocate to get my GP to do those things). Hopefully doing those things will keep me going and will slow down to possible progression of my symptoms.

During the appointment my cramps and nausea started up - talk about irony!

I've got a 6 month follow-up appointment but she said if things get worse they can bring that appointment forward.

Even though travelling is really difficult I'm thankful to now be under such good specialists (the local gastro Dr I saw was very lacking on knowledge on how to treat me) and I'm also grateful to the patient transport crew that get me to all my appointments and take such good care of me.

Monday, 4 February 2019

GUEST POST by Laura & Lucy from 'Debating Mental Health' For Children and Young People's Mental Health Week

With children and young people’s mental health high on the political and media agenda and with “listening to young people” billed as key to “transforming services”, Laura, the Director of Debating Mental Health and Lucy, one of the young people Debating Mental Health works with, reflect on what “listening to young” people should look like in relation to young people’s mental health and across the mental health sector.

Debating Mental Health works to empower young people who have experience of mental health support needs by equipping them with the skills, knowledge and experience they need to speak out on what matters to them in mental health and to take action, where that is desired.

Laura: As someone who works with young people, helping them to use their voice, I am often asked how others can engage young people and how they can talk to them, especially about topics related to mental health. For a while, I used to say “just ask some questions, like you would if you were starting a conversation with anyone else”, but now, I have to say, I have changed my mind slightly and I think, going forward, it will be “listen” and when I say “listen”, I mean really listen.

These days, life can be so hectic, that our interactions with young people (indeed, all people) are often brief and distracted. We ask questions, but don’t really listen to the answers, because we’re thinking about what to cook for dinner, getting a piece of homework done, or where Aunty Ethel is going to sleep when she comes to visit, but if we slow down and really listen-especially when talking about mental health-wonderful things can happen. When we slow down and listen to young people we show them that we care, we show them that we want to take the time to support them and we show them that we believe in them. We also build the relationships that are essential if we want to change the way we do things in the children and young people’s mental health sector. If we really want to change services, so that they truly meet the needs of young people, then we must learn to listen in the way that empowers young people and supports them to take a lead and deliver change within the mental health sector. But, additional to this, we must learn to understand when listening is all that is wanted of us, that sometimes, we should listen for the sake of listening, rather than to offer our opinions or solutions to young people, who often just need to feel heard and understood, so that they can find their own solutions.

Lucy: As a young person with extensive experience of mental health services and both positive and negative experiences with mental health professionals, I know the huge value of effective listening. Listening is so much more than having an open ear, although that is very important; the secret is engagement. If you listen effectively, you are engaging with the person or people speaking and you are engaging with what is being said. If you do this, you will feel compelled to respond; respectfully and compassionately. 

Talking about mental health can take a lot of courage. It can feel quite exposing opening up about personal difficulties, so when we listen effectively by engaging, a person can feel validated and supported, as opposed to vulnerable and alone. Engagement then encourages further engagement and honesty - it opens doors - and creates almost a snowball of trust and progress! 

Young people can be empowered through reciprocative engagement across many areas of their lives; schools, extra-curricular activities and healthcare. Ultimately, our engagement with young people should build young people up. It should encourage self-belief, perseverance and confidence. And it is not an insurmountable task. A few words of encouragement to a young person feeling destined to failure in their maths class can transform their attitude. This engagement can lead a young person to fight the fear of failure, apply themselves and achieve, such that they have the confidence and determination to overcome other barriers. This can similarly be applied to anxiety, suicidality, depression and any other feelings young people may be experiencing. There can be huge value in a few words.

Importantly, however, engagement must be assertive. In a therapeutic healthcare setting, it is important to engage with young people in a way that equips them to be able to lean upon their own qualities and skills in hard times. Mental health services can be a significant support to young people, but their reactivity can lessen young people’s capacity to feel able to support themselves. Through engagement, young people should be able to feel strong; able to stand on their own two feet, whilst knowing they can reach out for support and will be properly listened to. 

The lack of engagement within mental health services is an ongoing and pressing issue. Mental health services deal with life and death much like physical health services do. Yet this reality is often softened, in part due to the inability of scans and blood tests to confirm difficulties. But this is exactly why engagement is so essential. It is the vehicle to recovery from mental health difficulties, because it facilitates accurate diagnosis and the implementation of a correct treatment plan.

When I consider the impact a few people in the mental health world have had on my life, I feel excited! Because I now know, after all these years, what it means to be properly listened to, and I know the potential of engagement to transform young people's lives. Through engaging with Laura at Debating Mental Health, including taking part in a debating workshop and attending and presenting at the Global Summit for Mental Health 2018, I have hugely grown in confidence and rather than feeling like a vulnerable patient because of my difficulties, I feel like a strong young woman with valuable experience that can be used to help bring about change for the better. 

Similarly, I look back fondly on my time being supported by an CAMHS outreach worker, who took the time to fuss my dog and get to know my sarcastic sense of humour. These things are not trivial; in fact, quite the contrary. My dog is my world and she knew that - she showed interested in me as a person beyond my difficulties - and for that reason I felt more able to trust her and open up. Through taking time to get to know my sarcastic sense of humour, she would be able to know when the “I’m fine”s meant quite the opposite. I think this shows that engagement can take varied forms, but that it doesn’t have to take a lot to make a real difference to a young person’s life.

Let it be remembered, though, that young people themselves are making waves in the mental health world. As experts by experience, we must be taken seriously. We are the ‘now’ generation. We have stories, we have felt pain, we have sought help. Yet we are determined, we are strong, we have huge hearts and we want to make a difference. 
Let this be an open invitation to engage with your ‘now’ generation!

Twitter: @DebatingMH
Facebook click here.


Saturday, 2 February 2019

One Second Every Day - January Week 5

Monday 28th January

Went out to run a few errands with my carer at 12pm. Then at 3.30pm I had a quick appointment with orthotics to get my new knee brace fitted. 
Whilst waiting for patient transport to take me home I started having a seizure with no warning. Thankfully I buckle myself into my wheelchair (and I was in my wheelchair) so I didn't go anywhere. 
Came round in A&E. Thankfully this time I got really good care, the nurse looking after me was lovely. He followed my care plan and got a cannula in me and some diazepam which calmed my seizures down but I was still twitching and also some cyclizine as I was being sick. He also got me comfortable and propped and bolstered me up with blankets as my shoulder kept popping. I also had some bloods taken and some of my results were a bit off (phosphate, lactate, blood glucose and potassium) so I had a bag of IV fluids with these in to bring my levels back in to the normal range. I had my obs checked. I mostly slept in A&E. The IV fluids did the trick. The Dr came and saw me again and said that to admit me it would be a 10+ hour wait for a bed and with my low immunity she didn't;t want to risk catching an infection and even though my seizures have been worse I'd probably get better care at home and I have the meds I need at home too so I was discharged. I was having speech difficulties again so my nurse was trying to call Dad and Mandy for me (be just got voicemail) but then TASL (patient transport) called to say they was taking me home. 
Whilst we was waiting for TASL I was overdue with my 6pm meds and because I was still spasming my nurse helped me to take my meds. I warned him about my dodgy veins when he when to take my cannula out and true to my word it was a bit of a bleeder!
It probably broke all of the moving and handling policy rules but to get me off the hospital trolly and into my wheelchair my nurse scooped me up and put me into my wheelchair!
When I got home it was just in time for tea then off to bed with Dad now checking in on me.

Tuesday 29th January

Busy day! This morning I had my support workers from the Wellbeing Service come and do a discharge visit as I've had my 8 sessions with them. I get on really well with them and I showed them my crochet blanket and Cat had a cuddle with Flop. 
I then had a bit of a break and a rest and then at 2pm someone from the Red Cross came to see me for a chat. 
It's nice that services like the Wellbeing Team and the Red Cross exist as as well as practical support it offers emotional and social support which is great as the medical teams deal with the physical side of your health but your emotional and social wellbeing care gets forgotten about.
I referred myself to the Wellbeing Team and I was referred to the Red Cross (it's only time limited but my support worker from L&H is looking into a befriender for me as a more long-term solution). 
In the evening I had another few tonic-clonic seizures and myoclonic seizures and once again I had speech difficulties. I was too tired to go to bed so I slept on the sofa until bedtime and the Dad helped me up to my bedroom.

Wednesday 30th January

Finally got to speak with someone at Revitalise Sandpipers (they offer repost holidays for people with disabilities). She tried calling me yesterday but it was always when I was in my appointments. I was worried because of my seizures that I wouldn't be able to go but they where absolutely fine with everything so now I just need to work out a few logistics and call them up and book my holiday with them!
My carer cam this afternoon and we had quite a productive time and then we went off to the GP practise for to have some bloods taken.
Since coming home I've just watched TV and written some letters.

Thursday 31st January

At 12pm I had my appointment with Dr Sally at Orchard Barn. I seem to be getting in a routine with my supplements and finding what's helping me at the moment. After my appointment I had a hot shells massage which was nice and relaxing but also helped with my pain.
I got home and quickly got something to eat and brushed my teeth and headed to meet Dad and Mandy at the Dentists. It was a fairly quick appointment I'm still having issues with pain in my jaw because of my muscle spasms bust also because of my hypermobility. My teeth where perfect and didn't even need a clean. It was a goodbye to my dentist as he's retiring and he's been the only dentist I've ever had since I've had teeth. 
When I got home I just rested and watched TV and typed a couple of letters.
I just chilled out and rested for the rest of the day.

Video description
Monday: View of my bed in A&E, (taken half asleep). You can see my flowery rucksack and my flowery doc martens boots and jeans and my wheelchair and a male nurse walking past.
Tuesday: Wearing a burgundy hoody and Flop my guinea pig in my arms with me stroking him
Wednesday: Photograph of my GP practice's waiting area which is a light and airy place with turquoise and blue chairs, stone flooring, a big window at the back and two big sky light windows.
Thursday: My one cup (self pouring kettle) dispensing water in a mug with a dinosaur shaped tea infuser

Tuesday, 29 January 2019

One Second Every Day - January Week 4

Monday 21st January

Spent the morning doing my usual wake-up routine. 
I received quite a lot of phone calls. One was from my care co-ordinator to check in on me after my blip at the weekend which was really good as I've felt since I left the TC that I've been a bit invisible. The other was from my independent advocate letting me know that my GP finally sent of the funding request for Leeds rehab (after waiting 14 months for him to do it). I really do feel getting an advocate involved has helped as I feel it's making professionals like my care-co and GP do their job and it's getting things done and getting my voice heard. We're still going to make an appt with the Practice Manager to raise the issue of how long it's taken my GP to send off for funding and to see if I can change GP.
Had my carer come at 12pm. 
Then at 4pm I had my initial appointment with the Adult ASD (Autism Spectrum Disorder) Team to see if it would be worth assessing me. They was really good and explained everything to me which helped and only one person spoke to me which helped me focused and they really understood "me", which I usually have to explain to people when I have other appointments. They did feel it was worth doing the ASD assessment so I'll be sent an appointment in the next few weeks.

Tuesday 22nd January

Exhausting but good day in London. Dad came with me today.
The journey there went okay, TASL was late but we got to St. George's on time, but Professor Edwards was running late anyway so I got my diet coke fix.
Professor Edwards was great as always. There's not much he can do for me, most of things now is just waiting for Leeds. He's going to continue seeing me which is good as the TC told me he was going to discharge me which sent me into a bit of a panic.
One the way home there was a lot of road closures and RTC's so we had to take the back roads. I didn't have any major seizure which was a bonus but I didn't feel well with a bad headache/verging on migraine and then I got really bad stomach cramps and sickness and I forgot to pack a heat pack but meds helped and I managed to get some sleep.
Home now and Mandy had my night time herbal tea ready for me so now I'm just settled in bed.

Wednesday 23rd January

Had a tonic-clonic seizure this morning so today has been a sleepy haze. The Red Cross was due to visit me but they had to rearrange due to a family emergency. Haven't done must, mostly napped, watched TV and crochet a little. I was too tired to migrate to my bed upstairs so had to make a nest on the sofa instead. 

Thursday 24th January

Made it out the house for some non-medical for the first time in weeks! Successful hunt for jeans, might actually go and get a second pair as I have to crawl around so much the knees ware out. 
Exhausted when I got back so I just rested. 
Today has been a good day for people like myself with M.E. as it was finally discussed in palimony today. Hopefully words will turn not actions. Had another tonic-clonic seizure this evening so when I came round and was well enough Dad helped me upstairs to bed and then brought me up my herbal night tea. I'm currently in too much pain to sleep so i'm just resting and distracting myself. 

Friday 25th January

Had my carer come this morning and we went to the postbox for some fresh air and to post some letters. Shattered afterwards so since then I've been in bed apart from going downstairs for meals. Been quite fatigued and brain fogged and I've struggled to concentre on much for long so went flitted between things like social media, crocheting, YouTube, and easy watching TV as well as napping. I think this morning, seizures and London are catch up on me. At least I can totally rest tomorrow. 

Saturday 26th January

Spent most of the bad on my bed just doing bits and bobs. I managed to have a wash which I haven't managed to have a 'proper' wash since Monday. That tired me out.
In the evening I fast watched my way through Alien catching up on the bits I missed and skipped though the bits I remembered as I was really struggling to concentrate when we watched it the other night. We watched Alien 2 in the evening but halfway through when I went to make myself a drink I had a few tonic-clonic seizures so I was too brain fogged to do anything except get Dad to help me upstairs to bed.

Sunday 27th January 

Slept in and forgot to reschedule my alarm to an hour earlier to get up in time to get ready for church so I had a lay-in and I feel bad about not going to church I haven't gone in weeks but it's a difficult balance of doing things I enjoy but pacing myself and not pushing myself too hard and making myself ill. 
It took me an hour to get out of bed but I got out of bed and had my breakfast downstairs and I brought down my crochet and sat on the sofa and put on some background TV and I've now finished the baby blanket and I'm just about to look at other blanket patterns to use with the yarn I bought. I was thinking of doing another star blanket but it will be nice to do something different.

Video description
Monday: view of a waiting area with a reception desk, grey double doors, a corridor and shelving unit. 
Tuesday: View out of the ambulance window whilst driving and cars and trees going past.
Wednesday: Small glass bottle with wooden beads in and another bead being dropped in.
Thursday: View of laminate flooring and table and chair legs and Flop the guinea pig who has a black, white and tan colour coat running around.
Friday: Red postbox with several letters being dropped in.
Saturday: Silver plug in disc port and a black DVD being ejected with 'Alien' written on the DVD.
Sunday: TENS machine which is white and green with different buttons on and a wire coming out on my lap and a blue digital display screen with different number on and me turning a button up and the number on the display turning from number 1 to 2.

Monday, 28 January 2019

What a day // Health Update [CC] YouTube video

So I made a video as it was easier than talking (though maybe I should have done the CC tomorrow and published tomorrow instead of tonight, but oh well).

So what a day. Went to orthotics for a quick appointment to fit my new knee brace and I ended up spending a few hours in A&E after having a prolonged seizure whilst waiting to be picked up to go home. Thankfully I got really good care in A&E.

Home now and about to settle down to bed.

Thursday, 24 January 2019

#MEdebate (+ transcript for video)

Today's in parliament M.E.* is being debated finally after 20 years (the last debate was in 1999).

Here's my virtual contribution. 

Stop GET (Graded Exercise Therapy) & CBT (Cognitive Behavioural Therapy) - it doesn't work.
NICE* guidelines need to change. 
Give people with M.E. equal access to care wherever they live - no more 'postcode lottery' and increase specialist rehab centres.
Invest in biomedical research. 

In the UK 250,000 people have M.E; 1 in 4 people are severely affected, thats 62,500 people if you put that in numbers.

For to long M.E. suffers are left alone in silence. We want to contribute and be part of society; not hidden away. We deserve better.

Stephen Pound MP gave a really good contribute to today's debate.

[Video CC: "What we're talking about is that we have to change attitudes. You cannot dictate an attitude; we haven't had a dictator in this country since Oliver Cromwell. You cannot say what a people will do. But what you can do is to raise this issue calmly, objectively and using all the pragmatic skills available to us and to actually use the data that's available and I'd like to say to all those people out there suffering from M.E.; all those people who suffer from Chronic Fatigue Syndrome; all those people who've been ignored and belittled and insulted in many cases, this house recognises the reality of your condition. This house will not sit idly by whilst you suffer. This house will not ignore you. This house will devote it's intelligence and its resources to research, ultimately to resolve and to cure this terrible condition because we respect you, we understand you, and we give credit and credibility to what so many people have for far far too long been denied. M.E. sufferers the world over must know that this house and this nation is finally speaking for you."]

Thank you to all the MP's that went along to the debate today. Hopefully change will happen.

Watching the debate was very moving. Seeing such support for people like me and hearing that parliaments agrees that GET and CBT do more harm than good and that more biomedical research is needed and that M.E. needs to be seen and treated and a physiological condition. That care professionals need to change their attitudes and that areas such as education, work, DWP and housing also need addressing. MP's also read out case studies from constituents in their area with M.E. and hearing their stories made me feel like I wasn't alone in my struggle with the condition.

To follow and find out more about the date search #MEdebate on Twitter.
The full debate can be found on Youtube here.

(Myalgic Encephalopathy)
* (National Institute for Clinical Excellence)

Monday, 21 January 2019

One Second Every Day - January Week 3

Monday 14th January 2019
Struggled to get up in the morning. Did my usual morning routine and then got myself dressed and did and extra tidy of my bedroom and the bathroom. 
Debbie my nurse from Bluebird Care came round for a catch-up at 12pm and then at 1pm Dennis (my Care Supervisor at Bluebird) came round to join us for my home OT assessment. The OT came and she was lovely and she went through a questionnaire with me and then one of her colleagues joined us. 
I feel like the assessment went well and I was listened to. Some of the things we're going to trial is a bed raiser that will raise the head of my bed up and down for when I need to sit up or lay down without having to struggle with cushions and also instead of my bath board where I struggle to lower myself on and off the bath board into the bath they've suggested a bath lift to trial. Some things where a bit of a no-go as Dad and Mandy aren't keen of the idea of things like grab rails drilled into the wall. The OT is also going to write a medical needs letter for housing for me to use if needed should I get funding for care so I can apply for an accessible adapted property. 
The OT, she's also going to speak with the home physio team to see if I can get home physio as my GP wouldn't authorise it (but didn't give and explanation as to why or ask me why I felt I needed home physio) so hopefully that will happen as I'm really going to struggle to get to the hospital and back which how my health has been. 
During the assessment my muscle spasms started to play up and I needed to take my lunch meds and Dennis was going to make me something to eat after to assessment and when I went to take my tablets I realised I forgot my breakfast meds (major oops!). 
Towards the end of the assessment I was getting quite tired and I had a few myoclonic seizures and then I suddenly had a tonic-clonic seizures, and then another and another and it went on for over half an hour. Debbie and Dennis tried to leave off calling 999 as they know how much I hate ambulances and A&E (to put politely - aka hell on earth) but it got to the point where they had to call for an ambulance. 
Stupidly EMAS (for the second time now) sent an EMT crew to me who aren't qualified like paramedics to cannulate or give IV diazepam like my care plan states and they weren't happy to give me any of my own liquid oral meds incase I aspirate on them. Debbie and Dennis tried to persuade them to let me stay st home as they can stay with me but they said as they was there now it was protocol to take me into A&E. 
Thankfully Debbie followed the ambulance and stayed with me in A&E for a while and whilst she was there she gave me me diazepam and some oramorph which a) A&E would have taken A&E hours to get round to doing or b) wouldn't give me the medication despite my care plan. Debbie had to leave but I only had to wait on my own for about an hour/or two (time was a bit blurry) staring up at the ceiling (hospital seriously need to have more interesting ceiling if you have to lay looking at them). I'd managed to speak with both Dad and Mandy with Debbie's help and when Mandy was free she came with shoes and my crutches to pick me up form A&E and go home early as when the Dr saw me and Debbie had said what meds she'd given me he said they'd just "monitor me" aka laid on a trolly in the corridor with no one at all coming and checking and asking me how I was. 
So Mandy came and we got home where I got more care and monitoring than I was getting (as usual) in A&E. I had a little cuddle with Flop and then went up to bed and Mandy got me something to eat as my blood sugars where low (unsurprising as I hadn't eaten since breakfast) and I also needed to take my meds. As a distraction I sat in bed and did some blogging and wrote some PostCrossing postcards. 

Tuesday 15th January 2019
Woke up this morning in a heck of  lot of pain due to my right shoulder being dislocated so I took some pain relief and put something to watch on my laptop. I can't wait to get this bed head raiser as it will be so much easier than having to mess around with cushions, especially when you're in sky rocketed levels of pain. At 11.30am I had someone from the Red Cross come round just to chat to she posted some letters for me. In the afternoon I had my Bluebird visit which was moved over from yesterday. I was quite tired after so the rest of the evening was just spent not doing much.

Wednesday 16th January 2019
I started on a new crochet project today making a baby blanket for a friend a church. I also got round to finally cleaning Flop out. In the afternoon I had my physio appointment. It was a new referral even though I've been before so most of it was paperwork, questionnaires and just a physical assessment. It was with my favourite physio Suzi and there was also a new to the department physio that joined us just so he can learn. I've got some exercise to do and once I get my knee brace fitted we can start some work in the gym. I've worked out how to sort out patient transport so they arrived just before I finished with Suzi so there was no waiting around to go home. The rest of the evening I just spent crocheting and resting.

Thursday 17th January 2019
I had Rosie my carer 11.30am-1.30pm today. It's been quite cold today so most of today has been trying to hibernate and keep warm and do some crocheting. I also had a home visit from my support worker at L&H who's going to look into getting a befriender for me as the Red Cross is only short-term support. I had a seizure just before tea so Dad kept it warm for me and I was pretty tired and out of it so after I ate I went and laid on my bed an put on the TV and had a doze but I tried not to sleep too much so I sleep well tonight. I've dyed up two short letters and now i'm just about to settle down and go to bed.

Friday 18th January 2019
Struggled to get up this morning then at 11am, still in my pj's Jess one of my carers turned up. The office had changed the time without letting me knowing which was super annoying. Jess and I went out and got some (cold) fresh air for something a bit different. I've spent most oft day in the sun room for a change of scenery and made it toasty warm with he heater in there and got on with crocheting the baby blanket that is my current project. It's star shaped and is really easy to do and I've ordered more yarn and I'm going to try and make it as bi as possible and I showed my friend Dani a picture of it (as its for her baby) and she loves it which is really nice and she's invited me to the baby shower party in March. Abi also posed round for a few hours and we had a good catch up and drank tea. I got lost in my crocheting and went to bed later than I wanted to and now i'm struggling to get off to sleep due to pain and it s that verbalised achy background persistent pain and one of the problems with FND is that pain signals can remain switched on in the brain for days, weeks, months and even years and pain relief meds don't always work so it's just a case of trying to distract yourself as best you can.

Saturday 19th January 2019
Had the worst sleep reversal i've had so far. Didn't get off until around 4am and then forced myself out of bed at 11.30am-ish (but could have stayed in bed way longer), thankfully I took my 10am meds before nodding back off. Today has mostly consisted of crochet, easy watching TV, crochet, rest and cuddles with Flop. I've also really struggled with my PTSD today so ended up picking up the phone for support and I was encouraged to taken my PRN meds and I'm now settled in bed with distractions and self-comfort and I'm also glad that thins morning I found 'Mouse' as I thought I'd dropped her out of my pocket and lost her somewhere. So now for an early night and hopefully better sleep.

Sunday 20th January 2019
(Writing this on Monday so can't quite 100% remember what I did) Struggled to get up this morning so didn't make it to church. Spent most of the day resting, watching TV and getting out my sticker-by-numbers book which I haven't done in a while. I've not been able to work on my crochet blanket as I need more pink yarn. I also got a letter finished off to one of my pen pals. I'm trying hard to get into a sleep routine so I did that at bedtime.

Hope list...
  • That the new OT gadgets will help 
  • That my care in A&E will improve and my admissions this year will reduce.
  • That having the Red Cross coming round will help me and give me some company and that my support worker from L&H will be able to find me a suitable befriender that I can feel safe will and leave the house with
  • That my sleep routine will improve and help me
  • That next weeks appointments go well
  • That next week's PEM won't be too bad
Video description: 
Monday, a view down an A&E corridor. 
Tuesday, a still picture of the Red Cross leaflet. 
Wednesday, a view of the physiotherapy department waiting area with different types of chairs and information notice boards. 
Thursday, me stirring a cup of milky white water and powder with a green measuring spoon (one of my nutritional supplements). 
Friday, a video clip of me crocheting. 
Saturday, me going Flop the guinea pig a pice of broccoli stalk. 
Sunday, me placing a sticker on a sticker-by-numbers book