Saturday, 30 March 2019

Chronic Illness Bloggers Network

Text reading 'Chronic Illness Bloggers Network - Proud Member' and a picture of a laptop with a rainbow awareness ribbon
So I've recently received an email accepting my request to become a member of the Chronic Illness Bloggers Network.

The network brings together bloggers living with and writing about all sorts of illnesses and disabilities.

They offer a directory of blogs where you can find blogs which focus on all sorts of illnesses and disabilities. There's also a blog.

By becoming a member it just helps to put this blog out there and allows me to connect with other bloggers with chronic illnesses/disabilities.

There's also help for bloggers to help people like me grow my blog and make improvements such as the best hashtags to use on Instagram, improving accessibility, and there's blogging tips which I'm going to look at more when I get some free time.

Thursday, 28 March 2019

A&E - Positive experiences so far this year

So far this year I've had a few admissions to A&E including today and a few paramedic call-outs were I've bee able to stay at home and so far this year things have been better than my experiences that I had last year.

My first experience of A&E this year I was already at the hospital having an appointment with the orthopaedic clinic getting my knee brace fitted and things are a bit blurry but I got good care then which made a pleasant change.

I then had a few call-outs at home. One call I was with my carer and the fast response paramedic came and gave me some Entonox and some of my own diazepam and even though my seizures didn't subside completely I like to avoid A&E as much as possible but things have calmed down enough for the paramedic to be happy enough to leave me at home with someone with me and my friend was popping round so she took over from my carer and sorted me out and we had a nice catch-up which was a much needed distraction and then my step-mum came home.

Today I had my appointment at Orchard Barn. Whilst waiting for my taxi to go home I had a few tonic-clonic seizures without warning and then like usual when I came round was having continual myoclonic seizures. I was quite postictal (the altered state of consciousness I'm in post seizure) and my speech was also stuttering. I'd dislocated my hip and shoulder. Dr Sally gave my some of my morphine but I was still in a lot of pain and kept going back into tonic-clonic seizures, probably because of the pain, so they called for an ambulance. The staff at Orchard Barn was great. The put pillows and towels around me to support me and put a cold flannel on my forehead to cool me down and they was really calm which was just what I need and the called my step-mum a couple of times.

The fast response car came first and he gave me some Entonox and IV diazepam and called for an ambulance crew. Using a scoop to get me onto the stretcher they got me into the ambulance. A&E was rather busy but I was still postictal and my brain had gone AWOL. I was initially in the ambulance handover bay. I spoke with my step-mum on my phone and she arrived not long after and stayed with me in A&E which was lovely of her. By this point I'd been moved to a spot in the corridor. A Dr came to take some bloods, unfortunately my veins are rubbish and I was still having myoclonic seizures in my arms so she had to put a cannula in my foot.
After a short wait got sorted out with some IV cyclizine and the off x-ray we went. They was going to take me to x-ray earlier but I asked if I could go after I'd had some anti-sickness meds.
When we got back we was in the corridor for a little longer and then I was moved to a room and I was finally given some more pain relief. I've been trying hard not to ask staff too much for things as I know they'll get round to me when they're ready but it's not nice when you're in pain and waiting for medication. 
Thankfully today that gave me all of my meds IV which on my care needs and wishes list as in acute settings it's what I need to to my poor absorption of tablets. 
The nurse looking after me was lovely as was the main Dr taking care of me. Dislocations sorted my bloods where okay, well borderline okay but that's normal for me though my haemoglobin was pretty low but the Dr just said to keep taking my iron tablets. I also have a UTI (bladder infection) so I've come home with some antibiotics.

The nurse suggested I do something like blogging to share my experience of being a young person with chronic illness and living with a disability and I said I already had a blog and told her a little bit about it and why it's called 'Diary of a Zebra' and she thought that was great and so told me to keep it up and that what's prompted me to write this as I think it's nice to turn a negative (my seizures) into a positive post about how A&E has been as okay an experience as A&E trips go this year.

I feel grateful for my step-mum being there for me today and for going to the kitchen's to get me some soya milk for a cup of tea as the nurse said I was better to drink tea than coffee and I'm not too keen on black tea. (My step-mum works in the kitchens so she was able to nip in for me). Tea always makes things better and it should be on the NHS prescription. 

I'm home now and my step-mum cooked tea (dinner if you're not a UK northerner) and now I'm just finishing off this blog post and I'm going to get into my pj's watch something on TV and then head to bed.

Tuesday, 26 March 2019

The emotional toll of being chronically ill

The emotional toll of being chronically ill is HUGE. Most of the time you have to hold it all together and put on an mask and smile because life has to go on because there is no magic cure but then you get moments where you just crumble and you find yourself wrapped in wet towel crying because the burden of holding it all together became too much.

That was me tonight. Just the thought of getting dressed too tiring let alone the thought of getting through tomorrow. Knowing you will have unrefreshed sleep because I can never get comfortable and another day of relentless pain, debilitating fatigue and the unknown and unpredictability of what symptoms I will have, or how many falls or seizures I will have.

The unpredictability brings a lot of anxiety and a few weeks ago I had a really bad seizure a church resulting in paramedics being called and that's taken a huge knock to my confidence, especially leaving the house.

Simple things can can set me off sometimes, like tonight. I can find myself getting angry or frustrated or upset over spilling coffee granules because of my tremor or myoclonic seizures, or people not understanding me when my speech is slurred or stuttering, or my continence pad leaking and having to change my clothes or bedding at 4am. But in that moment those small things become big things.

It's like chronic illness is a cup and every minute of pain, or being too tired to move, or spilling a drink etc is a drop of water into that cup and it gets to a point where that cup overflows and you breakdown because you can't contain it anymore.

For me I see my specialists in London every 6 or so months but in-between then I get little medical support so I feel like I see them and then I'm left on my own. Everyone seems so wrapped up in my physical health that the emotional toll of my health gets forgotten about. I'm under mental health services for my mental health but they're so clueless about  my physical health that they're not much help either. 

It's not just the medical burden of symptoms but the day-to-day activities that become an emotional burden because of how difficult they are to do. Things that able-bodied people take for granted and don't think twice about being able to do like getting dressed, or having a wash, or getting up to make a cup of coffee.

I think the emotional aspect of being chronically ill is the most invisible and sometimes the worst aspect. 

As well as having to deal with the illnesses themselves comes all the admin which is also emotionally draining. The phones calls and emailing which is exhausting especially when you get bad news and so you have so sort that out or there's a meeting so you need to invite this person and that person and you have little help in doing that.

It really is hard to sum up, especially to able-bodied people how emotionally overwhelming being chronically ill is and I find myself typing here over the past few days putting this post together getting frustrated trying to find the right words to get across what it is I want to say in explaining the emotional toll of being chronically ill.

You become sick and tired of being sick and tired. And there's no let up; no days off; no hours or even minutes where I'm symptom free. Being ill and disabled is my full time job and it's a job I didn't choose and one I can't resign from.

I'm not quite sure how to end this post but it was a place to vent and explain that there's a whole emotional side to being chronically ill that people with chronic illness and disabilities have to live with. And for those whose illness or disability came later in life there is also the loss of the life we had before.

My advice to able-bodied people is if you have a friend with a chronic illness/disability is just simply be a friend and listen to them - a chat over a cuppa can go a long way. Or ask if there's anything you can do to help. But also remember that there is more to a person than just their illness and it can be nice to talk about other things too which gives us a nice distraction from the illness that we're having to deal with on the inside. 

One Second Every Day - March: Week 4


Monday 18th March


Went out with my carer and managed to get my glasses fixed which I broke during a seizure. They're not perfect but they're do-able. We then had a drink in Costa and headed home.
I watched TV for a bit and then took a break to do some college work and then when back to watching TV and now I've just finished doing a bit more college work and now I'm going to start getting settled down for bed.



Tuesday 19th March


Popped out with my carer today to post some letter and drop in at the GP practise.
All afternoon I've been attempting to get some college work done but so far I haven't managed to get done what I want as my brain is so foggy and I'm struggling to focus. Even attempting to work in short bursts hasn't worked - my brain is just going in slow motion.



Wednesday 20th March


Had a nice quite comfy clothes day.
My POTS was playing up a bit today but I managed to get my target of two modules of work done. Some days I'm better at pacing than others.
Got quite a bit of mail today including some from pen pals, and some things for the Bravery Bottles project. I also wrote a coupe of bits of mail. I've gotten a bit behind but I've realised that I don't have to write a long letter, even if I just write a few letters it's the thought that counts and saying hello and that I'm thinking of you.
My step-mum bought me a new duvet as mine was in desperate need of throwing out and my new one is like a fluffy cloud.


Thursday 21st March


Struggled to get out of bed today.
The post has becoming earlier the normal so I came down to a stack of postcards from PostCrossing. I like the international stamps and I got a 'scratch and sniff' stamp from the USA.
My step-mum is kindly making me a cushion cover today for me using my Moomin's Doing Art fabric.
I'm having another comfy clothes day. It's nice having a break from appointments at the moment and just being able to chill out at home and spend the day at my own pace.


Friday 22nd March


Had another quiet day in. Not been feel great today physically or emotionally. Still feeling flu-like, headachy, tired, run down etc.
Only managed to get one bit of work read but that's okay; I have plenty of time.
Spent the afternoon and evening on my bed watching TV. Got a bit bored of Bones so I thought I try and find an alternative to watch so I've started watching 'Agents of S.H.I.E.L.D'.


Saturday 23rd March


Went to a friend's baby shower for a little bit this afternoon. I was in two minds about going as I've been feeling anxious about going anywhere since my seizure at church which has totally knock my confidence.
When I got home I watched some TV and fell asleep on the sofa.
Didn't manage to get any work done, but i'm telling myself it's okay to have days off.
This evening Dad, my step-mum and I watched a film called 'The Dressmaker'.


Sunday 24th March


Didn't feel confident enough to got to church again and my POTS was playing up again and I'm still feeling unwell so I've been curled up on the sofa watching TV.
Dad washed my hair for me and I spent the afternoon and evening on my bed.
The evening was finished off with Dad, my step-mum and I watching the final episode of Baptise.

Monday, 25 March 2019

A-Z of survival tips for UK FND Awareness Day 2019


Acceptance of what you can and can't do
Breathing exercises
Communication aids 
Distractions
Essential information, such your care plan
Fluids
Glasses, especially if you're photosensitive 
Headphones, especially helpful as a distraction or to reduce noise overload
Independence 
Jotting down notes, especially important things
Knowing when to ask for help
Looking  after yourself, your physical, social, emotional and intellectual needs
Medication
No, knowing when to say no
Organisation
Pacing
Quiet
Rest
Sleep routine 
Time out to look after yourself
Useful contacts, especially for emergencies
Vent, speak with a friend/family member or professional
Work/life/rest balance 
X - eXpressing yourself, you needs and your care wishes
Yes, knowing when to say yes
Zzz's, getting plenty of sleep

Thursday, 21 March 2019

GUEST POST by Hannah for World Poetry Day 2019

I have a number of diagnosis’, and in June of 2016 I was finally diagnosed with EDS (Ehlers-Danlos Syndrome) type three (now hypermobile EDS). EDS, along with another neurological condition, has wreaked havoc in my body. In January of 2015 I began to no longer tolerate food or water – and so now have a feeding tube directly in to my bowel. I have gastroparesis – but tests show that not only is my stomach paralysed, but my whole gastrointestinal system. I also have POTS neurological deafness resulting in use of hearing aids, and many other conditions. 

In January 2015, I was in my dream position in life. I had passed all of my GCSE’s, smashed all of my target grades, and was in sixth form, beginning to think about applying for uni to do teacher training. My illness resulted in a sixth month stay in Manchester Childrens Hospital – a very far way away from the rural life I usually lead. This resulted in the inevitable – my friends moving up a school year to year 13, while I started over in year 12, once I was home from hospital. My whole life had changed, and I found it so difficult to relate to people my own age. My family always say that I may be 21, but I have the life experience of a 40-year-old. I felt so desperate – like my life had been destroyed and I was never going to be able to accomplish my dreams; and that is where I was completely wrong.

Having always enjoyed writing, I took to the internet to try and find a club to join which would allow me to enjoy this hobby again. This is when I found Dove Cottage Young Poets, a group run by poet Kim Moore and funded by the Wordsworth Trust. I didn’t know anyone who went to the group, but decided I had nothing to lose. 

I had always wanted to be a writer. In Primary school I received the leavers certificate for the person “most likely to be a writer”. It was in high school that practicality took over – I decided to train to be a teacher – because writing was never going to pay the bills. Despite this, I ran the school creative writing club from year eight through eleven, and wrote many short stories. I still had the dream of being a writer in mind, although I was definitely listening to my head over my heart when it came to career prospects. 

The first year after coming out of hospital I felt I had nothing to lose. It took a few months of writing before I could allow myself to write about my illness and disability. I was so used to my conditions being the only thing people saw when they looked at me that I didn’t want my writing to be about that as well. However, I quickly learned how unaware the general population was regarding disability issues. I knew I had to start writing about that. First of all I started my blog, www.hannahwritesablog.co.uk . Where I started listing all of the medical and non-medical things that are going on within my life. I started the blog because when I went out of the house, the only thing anyone wanted to talk about was my illness. The blog has become so much more than a place to refer nosey people, it became my online space to give my opinion on the world. I also started to send off my poetry to journals and magazines – and had a number of acceptances.  This all gave me confidence, and also acceptance of my new body and experience of the world. 

Poetry has been so much more than a hobby for me. It has allowed me to explore where I now fit in within the world. It has given me the confidence to read in front of audiences and get away from the ‘rat race’. I don’t think you realise how restrictive school and work are until you are outside of that way of thinking. In many ways I am happier than I have ever been – and in other ways I am more depressed than ever, thinking of a life that could have been. Poetry has been a therapeutic and important thing for me, I feel privileged to have my first poetry pamphlet published and to have the opportunity to work alongside festivals, bloggers and to have made a whole host of writing community friends. I never thought poetry was something that I would grow to love. I think the intensive ‘unpicking’ of poems in school killed them for me – it was more about literary devices used and hidden meanings needed for essays, than an experience of being able to enjoy and love poetry.

The poem below is taken from my first poetry pamphlet ‘Dear Body’. Which is available for sale on my blog (www.hannahwritesablog.co.uk/shop), which is sold through PayPal.

I also have a Youtube channel where I talk about all things illness and disability which is www.youtube.com/HannahHodgson

Invisible


Watch Rapunzel
as she can’t get to the top of the tower
because there is no lift.

Or Cinderella, 
who can’t get to the ball
because there are no accessible pumpkins available. 

Watch Jack
as he learns to live with a brain injury
after he tumbles down the hill with his water;

Or Goldilocks
as she can’t find
an accessible bedroom.

Watch the princess
as she gets bed sores
from the pea in her bed.

Watch Snow White
as she recovers 
from her coma.

Watch Aladdin 
surrender his magic carpet license
because he’s having seizures.

So many stories
ignored because
they are not beautiful.

March 2019 Birchbox - 'You Go Girl'

This month's Birchbox theme is 'You Go Girl'.

In honour of International Women's Day and inspirational women out there this month Birchbox are donating a beauty product to Beauty Banks for every order placed in the Birchbox shop.

Inside the box it includes...




The Beauty Crop - Bronzer Compact  in 'Sardinia Sand'

Full size - RRP £8

This long wearing bronzer is filled with antioxidant reich green tea extract to energise and refresh the skin.
Simply dust over the cheeks for a healthy looking glow.




Chella - Clear Eyebrow Defining Gel 

Full size - RRP £15.50
Taming the brows to stay in a lovely shape whist fixing products in place.
Simply brush through your eyebrows to set.

Generation Clay - Detoxifying Clay Mask

Sample size - RRP £28.50
Packed full of natural activated charcoal which works like a magnet to draw out dirt and detoxify, clean, hydrate and reduce oil and minimising the appearance of pores.
Apply a thin layer to skin and leave to set for 10 minutes then rinse off.

Caudalie - Vinosource SOS Thirst Quenching Serum

Sample size - RRP £29
This product is 97%natural ingredients and will restore the skin's balance.
All Caudalia products use the power of grapes to renew and regulate the skin's hydration levels.
A perfect base for make-up.
Applying morning and night to cleansed skin.





BOD - Glitter Body Scrub in Pink Salt and Coconut

Full size - RRP £4.99
A vegan body scrub infused with ingredients to get rid of dead skin to bring a happy and healthy glow to your skin. Apply to the skin and rub all over to for a soft and scented skin.







Charlotte Tilbury - Scent of a Dream 

Perfume sample - RRP £49
An award winning fragrance with floral hints including lemon, peach, black pepper, jasmine, tuberose, violet and patchouli and amber based notes.
Simply fritz onto pulse points and smell amazing.

Tuesday, 19 March 2019

Ashamed of a diagnosis

I talk a lot about having M.E. and Functional Neurological Disorder and Hypermobility Spectrum Disorder (my main three illnesses that leave me the most disabled) here on my blog to try and raise awareness of what these illnesses really are and my life living with them, but truth is outwardly I'm ashamed because of how misunderstood these illnesses are. Often I just say I have hypermobility/connective tissue problems and some neurological disorders.

There's a lot of stigma around these illnesses. M.E. is often portrayed as a "just feeling tired" illness when in reality it's much more than that and the 'just feeling tired' can leave me in bed unable to move without a lot of effort. FND is portrayed as a psychosomatic illness or that I'm feigning my symptoms or that attention or drug seeing; like how can anyone fake a seizure for several hours - like my brother once told an A&E Dr I'd need to win and Oscars' to put on a tonic-clonic seizure like the one I was presenting with. And HSD is seen as 'way less severe than Ehlers-Danlos Syndrome' and one person commented online that is doesn't matter if people get wrongly misdiagnosed with HSD. Wrong! HSD can be as severe as hEDS, we just don't have all the symptoms for the new diagnostic criteria but I still regularly dislocated joints and have intestinal dysmotility and other complications and I've developed secondary debilitating conditions such as POTS.

Yet why do I still feel ashamed? Because of other people, not just by care professional but by others in the chronic illness community.
There should be no hierarchy of illnesses, whatever your diagnosis we are all equal, we have all had our lives turned upside-down we are all plagued by daily disabling symptoms wondering "why me?". 
No one, especially someone with a chronic illness should put another person with an illness down or see their illness as "worse" than another persons.

Care professionals should take the time to update their knowledge on a person's illness, or refer to their specialist consultant. Often this can be hard, especially in situations like A&E but it doesn't take 5 minutes to ask the person to explain their illness rather than jumping to judgements like a person is feigning their symptoms.
I can easy explain what M.E., FND and HSD is in a clinical way that makes my real illness a real illness and if I'm unable to I carry information on me that explains them for me.

Every illness/disabilty is equal and devastating. I shouldn't be made to feel ashamed of the illnesses I have.

Monday, 18 March 2019

One Second Every Day - March: Week 3

Monday 11th March

Really not feeling myself today. Tired, in pain and feeling low. Had my carer for a couple of hours. 
Spent the rest of the day just trying to look after myself as best I can.

Tuesday 12th March

I was meant to have my carer's for ½ an hour today but I wasn't feeling well physically and emotionally so I cancelled.
I've hardly done much today and my spoon count (see Spoon Theory) was very depleted today and most of my energy went into having a bath
I did manage to write a couple of PostCrossing postcards as a distraction.

Wednesday 13th March

Had a nice quiet recharging day and nothing much to it.
In the evening Dad, Mandy and I watched two episodes of 'Cheat' which I'm really enjoying as we didn't get to watch it the night before.

Thursday 14th March

Had my Bluebird visit today which helped lift my mood a bit. I recently had 3 new carers to my care team and one of them has become my main carer and we get on really well, plus she can braid hair.
I also called the Distance Learning Team to get my deadlines for my course so I did a bit of studying to get started.

Friday 15th March

Woke up and thought it was Saturday. Took me over an hour to get out of bed today.
Did my usual morning routine and actually got dressed before midday (little victories despite the spoons it took).
Watched TV for a bit. Struggling with concentration today so I've flitted through watching TV, laptop stuff, reading two parts of my distance learning course and writing a letter.
It was just Dad and I again this evening and I managed to concentrate for the film tough we had a break in between. It was a film called 'Sully' and it was about the plane that landed in the Hudson River in New York.
I've just finished off the part of work I was working on. It's now 9.15pm so I'm going to leave studying for n 

Saturday 16th March

Woke up okay-ish.
Like yesterday I flirted between doing different things again.
Not a very exciting day. 

Sunday 17th March

Didn't feel confident enough to go to church.
Washed TV most of the day; feeling a bit flu-like. Managed to get some studying done.
Evening wasn't too great with lots of seizures.

Saturday, 16 March 2019

GUEST POST by Hannah for Disabled Access Day 2019

Disabled people have the same hobbies, interests and passions as non-disabled people. We also need to go through the same mundane motions as the rest of society – from getting about our houses, to doing our shopping and going to work. But, whatever our health condition, disability or impairment, we’re still a long way from having equal access to most aspects of daily life. From architecture to attitudes and everything in between, we are not there yet. 
When you think of disabled access, what comes to mind? Is it an accessible toilet, a ramp or a lift? How about hearing loops, British Sign Language, lighing, braille, large text, easy read, personal assistants and the language we use?
Disabled access is so much more than ramps and toilets, and I want to share my thoughts on the least remembered yet most important element of access for disabled people everywhere – ATTITUDE! So, without further ado, here are my top 5 tips for being accessible by attitude:


BE OPEN MINDED

Attitude begins with open mindedness and understanding that, whatever your background there is, always more to learn. Disabled people, like anyone, are diverse and complex – they have different abilities and strengths and weaknesses and needs. Even people with the same impairment like to do things differently. Disabled people are not one size fits all. Treat disabled access as individual and listen to what people have to say.


THINK ABOUT YOUR LANGUAGE

Don’t be scared to talk for fear of saying the wrong thing. Disabled people have heard it all and as long as you have the right attitude and are willing to learn, say what feels right. When I’m accessing a building, event or attraction my general rules are to only ask what you need to know. You need to know how I can access the occasion. This doesn’t matter what my diagnosis is. Start by asking ‘How can I help?’ Don’t ask ‘What’s wrong with you?’ and don’t ask ‘How long have you been disabled?’ Always assume ability (go back to your first question, if a disabled person hasn’t mentioned that they need something, don’t assume that they do). Don’t be offended when a disabled person refuses your help – your offer is still appreciated. Most people prefer being referred to as a disabled person and some people prefer person first language such as ‘person with a disability’. Disability is not a dirty word but always consider whether you actually need to refer to someone’s disability and if not, just reference them as any other person – by their name or pronoun. Lastly, DO NOT make a joke or light-hearted comment about someone’s access requirements (unless you know that person well enough to do so). Just be friendly – good access really is in being a nice, friendly human.


SHARE INFORMATION

Information is so important for disabled access and good access information demonstrates a good attitude. The more you think about the information you give, the more confident I will be in accessing a service. Share all of the information, even the parts where you aren’t quite so accessible. Most people will be much happier to access a service that isn’t fully accessible if you have the right attitude and know they will be supported to access the bits they can and treated with respect. When sharing information think about everything you can offer as well as the room layout, ticketing (if appropriate) and event format. Attitude is Everything have a great template for thinking about access information for people with disabilities.


ALWAYS IMPROVE

Ask for feedback on your service from a wide range of disabled people and act on their feedback. If you have a business or you run an event, you can use feedback to sell your service, whilst demonstrating your attitude and making more disabled people feel welcome in future. Make sure you talk to disabled people and ask them how they’re finding it. Most disabled people will be so happy to share their experiences for improvement. I go to a lot of gigs – it’s my favourite thing to do. Disabled access and attitude is so varied in live music; I’ve experienced the very best and the very worst. I almost always give feedback when attending somewhere new and it feels so good to tell someone they’re doing something well. I wish more places would sell their good work through access information (tip number 3) so that more disabled people would access their service. Remember – the purple pound (that’s the spending power of disabled people) is worth £250 billion! Let’s start making disabled access competitive


SPREAD THE WORD

Be an ally of disabled people by spreading the word of good practice and raising awareness of attitudinal barriers. Tell your friends about all aspects of disabled access and raise awareness of all the barriers that disabled people face – it’s not just about ramps and toilets! Make yourself aware of good initiatives that need to be recognised more, like the Access Card (http://www.accesscard.org.uk/), which helps businesses understand the needs of disabled people. Keep talking about the importance of attitude in disabled access. The more we talk about it, the better we’ll get at it!

Hannah at a concert with a backpack for her enteral nutrition equipment
Hannah's blog can be found here where she writes about different topics including disabled access, live music, life with a disability, and her travels and adventures.

Helpful Links for Disabled Access Day:

Friday, 15 March 2019

One Second Every Day - March: Weeks 1 & 2


Friday 1st March

B-A-D PEM day from Thursday's trip to London (only managing to write this Sunday). 
Spent the whole day in bed except to go downstairs to bring my breakfast and a drink upstairs as my step-mum was out running errand and I also went downstairs mid afternoon for 10 minutes to eat so soup but just doing that tired me out enough to need a nap afterwards. 
My blinds remained shut tho whole day. Most of the day was spent laid flat as my POTS and OT (Orthostatic Intolerance) was playing up big time. 
I managed to watch Amazon Prime on my laptop with the screen on the dimmest setting and the volume as low as I could get it. 
I felt really flu-like and also had a migraine all day. 
Mandy brought up drinks for me and kept popping her head round the door and Dad did the same when he was home from work. 
It took me a while but at bedtime I changed into some fresh pj's. 


Saturday 2nd March

Still having a rough day and had a quiet morning. 
Mid afternoon with Dad's help I managed to clean Flop out as he was stinky. Straw bedding wasn't the best we've worked out so my step-mum bought some wood shavings this morning which smell much better. 
After a something to eat and a rest I had a bath (just gone 4pm by this point and I was still in my pj's). It was a spoonie bath, aka lay in the water and just pour jugs of water over you and then have a quick wash of your face, but I felt better for it and left my usual talc explosion on the floor. Having the bath lift makes days like today so much easier. 
The rest of the day was spent curled up on the sofa drinking cold and flu herbal tea. At least I wore something other than pj's for a few hrs today.


Sunday 3rd March

I really struggled to wake up this morning. I took just less than 1¼ hrs from my initial alarm going off. Still feeling pretty shattered so I decided to conserve my spoons and miss church again. 
I have managed to get dressed before midday today! 
It's now 2.13pm and I've had my main meal (when I'm eating for myself I prefer to have a small breakfast, then mid afternoon have a main meal to keep me going (though I still need to eat small portions) and then have a light meal in the evening) though writing this now I've realised I forgot my salt - a big thing for people with dysautonomia and POTS is to have extra salt in their diet. 
Dad and my step-mum are out for the to a surprise birthday meal in Lincoln so I've set myself up on the sofa with plenty of drinks and blankets so I don't need to go far. I've also got my CareLink just in case. I also have permission to put the heating on. 
I'm not keen on being alone as I worry about having a bad seizure or fall but I have to but equally I like the independence and the quiet and being able to do what I like when I like.
Dad and my step-mum weren't back as late as I thought. The got back around 5pm and we all ended up going and having a nap. I slept until around 7pm and then had something to eat and in the evening we watched Endeavour.


Monday 4th March

Getting out of bed was very difficult today. It took me about an hour ½ from my first alarm going off to then waking up to then getting out of bed.
I've not done too much today. I had my carer this afternoon.
My step-mum left me with a few jobs to do an by pacing and breaking tasks into little manageable chunks and rest in between I managed to get them done.
I also called my advocate to see what was happening with my Continuing Health Care assessment.
I've also done a lot on my blog today.
This evening we (Dad, my step-mum and I) watched the last episode of Endeavour.


Tuesday 5th March

I didn't get off to bed to easily due to pain even though I was exhausted and I was feeling low in mood too which being tired probably didn't help. Lately I've not been doing too bad at getting off to sleep.
Had a quiet day in apart from my L&H support workers beefy popping round but there's not much for them to do t the moment.
This evening we had pancakes for tea.
In the evening I spent quite a lot of time on my laptop trying to working out how to get a dropdown menu on my blog without having to try and work out some complicated computer code which I managed to do and then I spent ages creating the menu and adding and transferring the information; it was quite a job!
I think I over concentrated and over tired myself. Late evening (gone 9.30pm as Dad and my step-mum where back  from church group), I had an absence seizure and then mid absence seizure my heart started to race and I got hot and I knew I was going to have a tonic-clonic seizure but I couldn't act because I was in my absence seizure. Over 1½ hrs later I'd spent that time in various states in consciousness, having tonic-clonic seizures; myoclonic seizure in my arm and in my whole body; unable to speak; in full rigid spasm and in a lot of pain. 
By the time I was able to crawl upstairs it was pretty late but I nodded off fairly quickly.


Wednesday 6th March

Struggled to get up this morning.
Had my ½ hr Bluebird call this afternoon and we dropped some mail off at the post office and then my carer braided my hair for me.
Quick stop for something to eat and then my friend came round and we chatted for a while.
I was pretty exhausted by this point so I had a rest and then did some more work on my blog which was slow going but I'm started to feel happy with what I've achieved like building dropdown menus and just decluttering and organising everything.
It's nice having the back spare bedroom as a little sitting room.
In the evening Dad, my step-mum and I watched Baptiste.


Thursday 7th March

Mission accomplished getting up this morning! Sometimes it's the small victories that matter more.
Had breakfast, got washed and dressed and put on a little bit of makeup.
12-2pm I had my carer. All of the carers in my care team at the moment I get on rally well with and again small things like that make the world of difference. 
First of we went to Specsavers to get my glasses adjusted. We then went to Tesco. For the first time I used one of the clip-on wheelchair shopping worries which me and my carer found amusing, especially because of my lack of 3D vision I couldn't tell how far away or close to things the trolly was. 
I picked a different colour hair dye to my usual as I'd like to go more red but not bright red. I also got myself a new foundation and restrained myself from adding to my makeup collection. I have plenty of choice at the moment and I especially love the eyeshadow palette I bought a few weeks ago and I get makeup bits in my Birchbox too. I also treated myself to some tulips to brighten up my bedroom.
Back home now and exhausted so just I'm just going to crash out for the rest of the day.


Friday 8th March

Spent most of the day getting ready.
At 2.30pm I had my assessment with the Adult Autism Team. We went through questions about socialising, sensory hyper/hyposensitivity and then some open questions which we discussed.
It was quite difficult and draining.
I spent the rest of the day crashed out.
It was just Dad and me this evening so we watched a film.


Saturday 9th March

(Didn't fill this in on the day so can't remember what I did, oops!)


Sunday 10th March

Not quite how I planned to end my week.
Woke up late as I went to bed exhausted and forgot to change my alarm so I woke up late but manage to get myself together to get to church.
During worship I went into a prolonged seizure episode and ended up in A&E.
I feel so embarrassed as I get stuck in an anxious cycle of avoiding going to church in case I were to become ill so I avoid going but them I miss it and them days like today where I put my anxiety aside my anxieties just get confirmed.
When Dad was free after his church had finished he came to see me in A&E and we decided it would be best for me to go home as I can get better care there and I have all the meds I need and Dad to keep an eye on me an help me more as he can care for me 1:1 compared to the staff etc.
We got home and Dad got me into bed and gave me my meds and made me a drink and held the drink for me and I went off to sleep.
I spend most of the day sleeping/resting.
In the evening I though it would be a good idea to come and lay on the sofa downstairs and we watched Baptise.


Monday, 4 March 2019

Action For M.E. - 'Walk with M.E.' Campaign

Action for M.E.'s campaign Walk with M.E. event which is a sponsored walk with a twist: everything is done as a team. Starting on Friday 1st of February, team members count their steps for 100 days and add them together to make one grand team total, aiming to reach one million steps between them.

Walk with M.E. was organised for the first time in 2017 by Action for M.E. supporter Natalie, who was diagnosed with M.E. in 2010 and has kindly allowed us to continue running the event.

Natalie explains below how she designed the event to be accessible to as many people with M.E. as possible:

Natalie’s story 

“Ten thousand steps per day is quite achievable for most but it's actually quite a lot for someone like me. M.E/CFS participants will need support to complete this challenge, as they may do with their usual day to day activities. The challenge is therefore designed to be completed in teams, which means my team mates can help me out and donate their steps to help me achieve my target of 1 million steps over 100 days.”
To find out more or take part click here.

Saturday, 2 March 2019

One Second Every Day - February Week 5

Monday 25th February

Had my carers 11-1pm. Got something to eat and then met my advocate at 2.30pm. We discussed meeting with the Practise Manager and I gave her an update on things and how i was feeling.
At 3pm I had a CPA/meds review with my MH care-co and Dr.
Went home via the pharmacy.
Rested for the rest of the day as I need as much energy for Thursday.

Tuesday 26th February

Glad I went to the pharmacy yesterday and got them to deliver my meds today and woke up not feeling great and it just wouldn't have been possible to have gone in my ½ hr care call today. Instead my carer and I nipped to the post office (I would have left it to my carer but I need cash out) and then we sorted my meds out as my hands have been in too much spasm, also got something to eat and today's carer makes good coffee.
Not the best day seizure wise. Had one this morning and then another in the car with my carer.

Wednesday 27th February

My hairdresser came midday to trim my fringe and then my carer came. i was hoping to get my hair braided but instead my body opted to have a prolonged seizure and make acquaintance with a rapid response paramedic. Thankfully he listened to me and my care needs and wishes. Entonox helped calmed my spasms down and I was also pop my joints back in. The paramedic also gave me some of my own diazepam. I was still having bad myoclonic seizures but he didn't want to overload me with a top-up of IV diazepam. My carer stayed as log as she could and she was trying to arrange for another carer to come and take over when my friend Abi came to the door (in the chaos of everything I'd forgotten she was coming). Abi was happy to stay so my carer could leave. As there was very little A&E could/would actually do the paramedic and I decided home would be the best place for me and to call back if I start to get worse again.
Abi was great, she made me a sandwich and a coffee and she was patient with my speech difficulties and we chatted and it was a nice distraction.
In the evening I got my bag and packed lunch ready; put things on charge and downloaded some things to watch on my iPad and then had an early night.

Thursday 28th February

Up very early at 4am to give myself enough time to wake up and get ready, do final bag checks and put on some makeup. Luckily I did asTASL patient transport arrived early (around 5.20 instead of 6/6.15am) just as I was in the middle of doing my makeup so i got in a panicked rush as I'd planned to sit and have a coffee whilst I waited. 
I was glad they was early rather than late. We arrived at appointment 1 of the day in plenty of time and then Dr Kazkaz was running over an hour late.
It was a short appointment. Not much to actively do except see the specialists that I'm seeing for the complications of my hypermobility connective tissue issues (gastro, urology, orthotics, physio etc). She was please that I was taking on all the right advice to manage my POTS and subluxtions/dislocations and she's going to reiterate to my GP that self-management for subluxtions/dislocations is what I should be doing and that there's no need to present to A&E every time (which would be ridiculous) to "prove" that my joints sublux/dislocate. For now it's a case of attend the COPE Pain Management Programme and then the hypermobility exercise program and wait to go to Leeds to get my FND and M.E. more stable to in the future I can hopefully to the inpatient rehab programme at Stanmore (as Stanmore isn't an acute hospital they're not equipped for my seizures even though Professor Edwards says it's not a problem) but hey, we have a plan.
The TASL crew then picked me up and we detoured to the canteen for coffee and I got some soup and then we drove to Cleveland Street. I had a rest on the stretcher and had my soup; I also had a migraine brewing - tiredness and travelling being two big triggers so I took some pain relief and anti-sickness as as well as feeling sick from the brewing migraine I'd eaten too much.
My brain decided to have a little seizure - probably brought on by tiredness and pain and my blood pressure lowered and my pulse increase so maybe it was an autonomic seizure? (I'm still trying to work these out) Thankfully we had enough time before the second appointment to have a lay down.
Second appointment was more a group info session looking as what pain is, how pain affects our lives, the pain cycle and information on the pain management programme so we can make an informed decision about whether to go ahead or not. I'm going to give it a shot; I've noting to lose apart from all the travelling. The next step is to have a 1:1 session to assess my suitability for the programme, ask questions and for them to decide if I'd go the program individually or as a group etc.
Home with a pitstop at Peterborough services for the loo and a cup of tea (I felt in a tea mood); the TASL crew also got a KFC and we sat for a bit and then my brain decided to have a few more seizures. The crew was great we went back to the ambulance and they helped get me comfortable as I'd going into rigid spasm and they helped me get some pain relief and held the cup for me and then they help my cup of tea so I could drink (paper straws vs plastic straws people (!); the straw ban annoyance and how it makes life difficult for people like myself who need decent plastic bendy straws for drinking out of necessity). I'm so glad I got a cup tea as tea makes everything better. Once I was settled we headed back home.
Travelling today I've found a new onset on Amazon Prime that I like called New Amsterdam which is a medical drama (not like I need more of that in my life!) which I'd defiantly recommend.
Home, sorted a few bits out and then straight to bed.