Wednesday 31 January 2018

Bravery Bottles




BRAVERY BOTTLESSet up by Katie Fant the 'Bravery Bottles' project is a new project for anyone with a chronic illness, regardless of whether its physical or emotional everyone is welcome to join. Bravery Bottles aims to highlight acts of bravery, such as a hospital stay, going to a therapy session, having a test/scan etc. It’s whatever you personally consider an ‘act of bravery’. Through the project our acts of bravery are recognised, rewarded and our fight made seen. Katie sees that ”anyone living with a chronic illness is brave”.


"How does ‘Bravery Bottles’ differ from other similar projects?
Put simply, the difference between my project and other similar well-known projects is based on the definition of ‘bravery’ within the chronically ill community, in particular who and what is considered as ‘brave’. The majority of other similar projects are aimed at those with an illness that, at times, means lengthy hospital admissions, the need to be blue-lighted to Resus in ambulances, require multiple ITU stays, need regular surgery etc. as their lives are at risk. Having to face ‘acute emergency’ type scenarios like this is, of course, very scary and no doubt deserves recognition and reward - and this project does just that. As well though, it extends to include the people who still have to face, manage and cope with a chronic illness as part of their daily life, but who don’t necessarily have the ‘acute emergencies’ as mentioned previously as part of their illness. Those who have a ‘stable’ illness, or one that doesn’t require emergency hospital admissions, either because of the nature of their illness, or because they have community care implemented to allow them to be cared for at home when they’re more unwell than usual, are often not considered ‘ill enough’ to take part in these sort of similar projects. Not only is this unfair to the patient, but it also encourages competition within the medical community as to who is the ‘most ill’." - www.braverybotles.com

Being part of the project and seeing my little glass bottle filled up bead-by-bead has greatly helped me recognise the resilience I have within myself to just keep going an fight whatever battles come my way and it's a visual reminder of how strong I am and how I got through some really difficult things or the everyday things that I have to endure like blood tests, seizures, dislocations etc.

I have given myself a bravery bead for acts such as:

  • Going to an appointment
  • Having my spinal injections
  • Getting through a bad pain or fatigue day
  • Getting though a bad day with my emotions
  • Seizures
  • Hospital admissions
  • 999 call outs
  • Having a bad dislocation
  • Fighting anxiety
  • Having a blood test
  • Getting through a bad insomnia night
  • Bad symptom day

How to project works:
Each person is given a 'Bravery Bottles kit' which include a tracking booklet, 30 bead and a glass jar charm and a charm bracelet. For each day of bravery a bead is added to the jar. Once your jar is filled with the 30 beads a milestone charm is awarded. There are also extra charms, such as introducing a friend to the project or when its your birthday.
It's a way of recognising and awarding ourself for the 'acts of bravery' we face as a life lived with a chronic illness. As well as this there is access to the participants Facebook group, monthly prize draws and other competitions that you can be a part of.

To sign up to the project click here.
The Facebook Page for the is here.
You can email Katie about the project via braverybottles@hotmail.com
To donate towards the project via Just Giving click here.

Monday 29 January 2018

Non-Epileptic Seizures

I've become so used to having seizures that they are just part of my average day now. I have three types of seizures Myoclonic Seizures - these are sudden involuntary jerks; sometimes they are just one-offs and other times they come in clusters. I am usually conscious when I have then and they usually affect the right side of my upper body, but sometime they will affect my whole body.
I also have Tonic-Clonic Seizure which are your stereotypical seizure - unconscious full-body convulsions.Often I will get a warning, called an aura, before a seizure which will give me time to get on the floor or somewhere else where I will be safe and comfortable. Other time, like yesterday morning I get little or no warning - yesterday I collapsed in the bathroom and have a nice bruise on my hip from it. Sometimes a seizure lasts a few minutes; other times they can go on for quite a while. Sometimes I go into what is called a 'Status Seizure' episode whereby I have repeated seizures and generally require a 999 call out and medication to bring me out of the seizure. 
I also have Absence Seizures which just look like I'm day dreaming and only last a brief few seconds.

I have Absence and Myoclonic seizures on a daily basis. I've learnt to live with them though they can still be frustrating, like trying to make a cup of coffee and your arm jerks spilling coffee everywhere. I've learnt to adapt - I drink from lidded cups and have plastic crockery incase I drop it. I try to look at the humorous side of things but deep down it is exremely frustrating (just like I do with my subluxations and dislocated joints). And I have Tonic-Clonic seizures approximately every 3-5 days, though sometimes they can be a daily occurrence too if I'm having a bad week.

My seizures where put down as non-epileptic and part of a condition called Functional Neurological Disorder, but back in July when I met with a specialist neurologist he wasn't 100% convinced that my seizures where purely non-epileptic, so I'm waiting to have a Video Telemetry EEG test to rule out or rule in Epilepsy alongside the non-eplielptic seizures.

There are a few triggers for my seizures including: stress, tireless, pain and over sensory stimulation among other things including biological factors like low blood sugars, low blood pressure, having an infection etc.

The thinking behind non-epileptic seizures is that with FND the brain is unable to properly send and receive messages properly and when the brain gets overwhelmed, whether it be from pain, stress, tiredness or even low blood sugars the brain short-circuits and a seizure occurs.


All of my illnesses go hand-in-hand. So when I have a seizure it puts a huge strain n my joints; sometimes causing them to sublux or dislocate which the pain from that does't help. It also causes Post Exertion Malaise and impacts on my M.E. too.

Sometimes I can recover quickly from my seizures; other times I need to sleep for a while other times after a bad seizure it can take days to fully recover. And when i'm having a bad spell of seizures, the pain and tireless from the previous seizure triggers another seizure and so on so I don't really get much recovery time.

My seizures impact so much on my daily living. Cooking is out of the question as I've had too many accidents. I use a hot water dispenser as a few years ago I had a seizure whilst holding a kettle of freshly boiled water and had 2nd degree burns. To wash I have to have my phone next to me and someone hovering around just in case. Drinking and eating is hard when your arm is constantly jerking. I also always get anxious going out the house as I hate having seizures in public. Even with the confusion I get post absence seizure has caused me injuries in the past. Then there's how the seizures affect me that affects my daily living, such as the tiredness following a seizure and the pain in my muscles and joints. I hate being alone in the house just in case something was to happen, my anxiety worsens whenever this fear becomes true and it takes me a while to settle back into feeling safe again.

Medication only does so much and still then my seizure are classed as frequent and uncontrolled. 

I've lost count how many injuries I've had from my seizures - dislocated joints, broken wrists, burns and scalds, bumps and bruises, cracking my head open (more than once) and even a minor bleed on the brain (thankfully I didn't require surgery and it healed itself), cuts (such as from holding breakable objects in my hand and then having a seizure), falls down the stairs. I've even stopped breathing during seizures in the past.

Living with seizures never gets any easier. You just learn to adapt. You use gadgets and adaptations to make things safer; you shuffle up and down the stairs to avoid falls; you keep yourself on the sofa or in bed where you are safest etc. And that's all that can really be done; there is no magic wand, you just simply have to learn to live with it as difficult as that is.

Seizure Gratitude List:
  • Thank you to my Dad, step-mum, carers and friends who care for me when I'm having my seizures
  • Thankful to the paramedics who help me 
  • Thankful for the medication that helps manage my seizures on a daily basis and reduce medication like IV Diazepam 
  • Thankful to be under the care of a super specialist neurologist - Professor Mark Edwards
  • Thankful for the NHS esp A&E (despite it's flaws)
  • Thankful for my carers who help give me independence and confidence as much as possible

Sunday 28 January 2018

Insomnia

So it's 1.09am and I'm still wide awake. It' one of the stranger symptoms I have and it always perpelxes me that I have the symptom of chronic fatigue alongside insomnia. How crazy is that?!

Some days I can barely lift my head because I'm so tired but come night time I can't nod off. Other times I can just sleep and sleep and sleep.

I've literally tried everything at bedtime. Even my nighttime medication has no effect which I find frustrating, especially when you hear of how tired it makes others sleep at bedtime. 

Sometimes I can't sleep for different reasons - pain, struggling to get comfortable and overthinking being the main culprits but other nights, like tonight, there is no reason, sleep simply just doesn't want to come to me. There are nights when I'm physically exhausted but mentally I can't drop off and sometimes its the other way round.

How can I have chronic fatigue and yet have insomnia at the same time - it just does't make any sense?! I try my hardest not to nap during the day time in the hope that will entice sleep to come but not, my body and brain just won't have it. I also try other sleep hygiene stuff too but sleep still won't always happen. 

Maybe I'm trying too hard. Maybe I should just snuggle up in bed and but on the TV for the background and wait for sleep to come to me?

*** Update ***

It's now 2.43am and I'm still awake, but feeling sleepier (yay!)

Thinking of doing a post with some positive sleeping tips later today (aka the it's not stupid o'clock in the morning).

Despite the insomnia I am feeling gratitude for:

  • Having my own bedroom and a safe place to relax and rest in
  • My DVD player with Chicago Fire playing
  • My laptop

Thursday 25 January 2018

Just. Keep. Going.


I've not been having the best few days emotionally wise if I'll be truthfully honest. I've been struggling with my mental health but the pressures of chronic illness - dealing with pain and fatigue along with al the other symptoms and on top of that struggling with basic tasks has been weighing on me heavily too. 

Yesterday I met with my nurse from my care agency who's been doing a lot of advocacy work on my behalf; trying to get things sorted but we're both feeling frustrated. We feel like we're getting somewhere, like that meeting with A&E last month but since that meeting nothing has happened and we desperately need and Ambulance and A&E Care Plan put into place. My GP is also dragging his heels too, such as not responding to the countless phone calls and letters my nurse has sent to him, which is also frustrating and I have yet to hear back from the email that I sent to my rheumatologist almost two weeks ago. I also have on my to-do list to email my neurologist. My nurse has now suggested the idea that we see my local MP to explain how lack my care is from both the health angle and with social care too and see if that will get us anywhere?

I don't want to go into too much detail but living with mental and physical illness is draining and when you have a lack of a support network around you the isolation plays on you. Sometimes you wish that people could spend a week, or even a day in your life. The mediation regime, the pain, the struggle to get up, dressed, the brain fog clouding your brain, the isolation etc.

'Fight Song' by Rachel Platten is one 'Just. Keep. Going.' songs that I put on when I'm struggling so I thought I'd add it to my blog in case any of you need a little reminder to hang in there.



Today I am feeling gratitude for:
  • Music
  • The support being there when i'm in crisis
  • Medication
  • My Bluebird nurse
  • The health that I do have
  • The NHS


Wednesday 24 January 2018

PostCrossing

So I thought I'd do a little non-medical post on one of my hobbies which is PostCrossing

"The goal of the Postcrossing project is to enable anyone to exchange postcards with random people around the world. That's using real mail, not email!
It goes like this: for every postcard you send, you'll receive one back from another random member — and the more you send, the more you will receive. It's that easy.
You can learn about far away places, different cultures or even practice foreign languages. Postcrossing turns your mailbox into a box full of surprises!" What is PostCrossing?
I really enjoy PostCrossing as it a way of exploring the world and connecting with other members - hearing about their lives; what they've been up to that day and about where they live etc.

In my postcards I write different things depending on the receivers profile - sometimes I write out a short recipes; tell that facts about where I live or my favourite parts of the UK or just write about what I've done that day.


I've also done some 'Direct Swaps' whereby you exchange addresses with other members and you each send the other some mail; I've even become pen pals with a couple of other members though this. 


To anyone looking for a new hobby I'd defiantly recommend giving PostCrossing a go.



This is my lasted few postcards that I sent off today. That are going off to Bulgaria, Japan, South Africa and The Netherlands. 



Saturday 20 January 2018

Coffee and Cinema Trip - The Greatest Showman

Today I took an adventure out with two friends from the TC. We met up at Starbucks initially for coffee. One of the good things about Starbucks is they now offer oat milk which is low FODMAP friendly, however I was annoyed with the fact that they charge 40p for this option. I raised up with the mange and flashed him my Stickman Communications © Medical Diet card and explained how I due to medical needs I can only consume rice or oat milk and how I felt it was unfair that because of this I have to pay extra. He was very understanding and said that he wouldn't charge me and in future if I show this card that i wouldn't be charged for oat milk which I though was really good, so I'm glad I was brave enough to bring up this complaint and how facilitating Starbucks. 

One of my pet hates is emergency red cords being tied up and out of reach. The red cord in Starbucks was tied up and again I was brave enough to bring up this issue and how by it being tied up meant the it could stop someone from calling for help. Normally the complaint is just let with the member of staff and that's that but the lady I spoke with instantly went to the toilet to until the red cord. So all-in-all thumbs up to Starbucks today.

After our coffee's we headed over the road to the cinema to see The Greatest Showman. Good job we got there early as the showing sold out!

It's a musical set in historical America and is about a man facing adversity with a vision to put on the greatest show on earth.

We all really enjoyed it and it challenged my anxiety and it was good to socialise outside to TC too. I always get anxious about my health, like a joint popping out or having a fainting spell or a seizure but I just reminded myself that I was safe with my friends and that they've dealt with it all before at the TC.

I'm home now just resting and writing this blog. Its film worth watching and I'd highly recommend. Hope you are all having a good day too.

Today I am filled with gratitude for:

  • Being well enough to leave to house
  • My friends
  • Starbucks offering oat milk
  • My Stickman Communications © cards

Friday 19 January 2018

Pacing

Pacing is a key part of life with chronic illness and it's easier said than done. You can set out at the start of you day a nicely planned out pace day but as usual things like fatigue and pain have other ideas. Pacing is particularly important when you have an illness which involves chronic fatigue or persistent pain to try to prevent getting to a 'crash point' where functioning becomes difficult and to try and lesson station like Post Exertion Malaise (PEM) and levels of pain and flare-up of symptoms.

This was today's nicely planed out day. I used my Stickman Communications © Pacing Pack as a handy tool to pacing my day out. Green are easy tasks, orange are okay tasks and red are challenging tasks.The idea is that following a red or orange task you take a rest or green task. The visuality of my day laid out like this helps me plan out my energy and spoon count so I don't get to 'crash point'.


However, like I said, chronic illness has other ideas and its okay to change your nicely planned out day. I didn't do my email sorting today as phone calls to the Pain Clinic, Patient Transport and more excitingly booking my tickets for Harry Potter Studios took up more energy than I imaged and time had flown by and I hadn't yet had lunch so I got myself a snack and to do some physio exercises and then forced myself get to the sofa and put the TV on the get a rest. After a couple of programmes I was nodding off so took a nap on the sofa. The next thing Dad and Mandy was coming home and I'd been asleep for a few hours - maybe I should have scheduled in a nap? So the afternoon's plan went out the window and no tidying got done. My body just simply needed to sleep and rest, and that's okay.

It's strange as for most people making phone calls is an everyday mundane task yet for me, like today and I'm sure other out there living with a chronic illness it can be very tiring thing. And I think I' having some PEM still from Tuesday's seizures and A&E visit still?

I do feel a little bit annoyed with myself as I wanted to get some tidying up done but like with chronic illness is unpredictable and far too often your mind and body develop other ideas. But I think a learning opportunity today is to plan naps into my schedule and maybe move my magnets around more to meet my body's changing needs as the day goes on and also to not be disappointed when I don't get everything done that I want to get done.

Learning to pace oneself is hard and an evolving process and takes a lot of skill. I'd recommend using the traffic light system, even if its using a red, orange and green pen on your to-do list as I do. I'd also personally recommend the Pacing Pack fro Stickman Communication © in it you get a magnetic board kit, pacing stick-it notes and a pacing guide 'Getting the Best out of Life'.

Handy Links:

Thursday 18 January 2018

What I miss from before I got ill

 

This is quite a sad post as it's about loss and what I have lost to illness. Illness has take a lot away from me and although I have gained so much since becoming ill there is still a lot of loss.

I miss he freedom of dance. Now every step is cautiously calculated, my balance off kilter, not longer the flexible self I use to be instead my hypermobile joints just sublux, dislocate and cause pain rather than grace and beauty.

I miss horse riding and the exhilaration of being in the saddle and taking brave new steps like jumping over a new height and being at one with the horse - even just spending time with horses, grooming them and putting on their rugs (or pj's as I called them).

I miss my independence; now being alone causes anxiety and fear. I used to get on the train to see friends and volunteer in different parts of the country. Now I'm reliant upon having someone with me to ensure I'm safe.

I miss University; studying to be a nurse; having a purpose and goal in life. Now I'm the one being cared for and having little reason to get up in the morning. 

I miss being able to read books, even ones in adjusted text; now i can barely make it through a few pages without loosing concentration and forgetting what it is I'm reading.

I miss volunteering and feeling like I'm making a difference in the world. I used to do so much work - travelling down to London for meeting, conducting research, pilot projects. I did recently start volunteering at the local hospice, but my seizures put a hold on that.

I miss going to the gym. I do physio but I'm limited to what I can do at the home. To go to the gym would mean having to pay for a carer to accompany me and that's a financial pressure as I have to pay for my own care currently and although I get disability benefits (PIP) it doesn't come close enough to coving the full cost of having a disability.


 (one of my favourite ballet films)

The #MillionsMissing campaign aims to raise awareness for those with M.E. missing from the world due to their illness. Its is a campaign to raise better awareness and treatment for the with M.E.

Faith and Chronic illness

 "And now these three remain: faith, hope and love. But the greatest of these is love." - 1 Corinthians 13:13

I'm a Christian and my faith has played a huge part in learning to accept my life with chronic illness. 

The following verse has helped me a lot. It made me realise that God has put illness into my life to make me a better and stronger person.
"Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,My grace is enough; it’s all you need.My strength comes into its own in your weakness.Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become." - 2 Corinthians 12:7-10
Through God I know I am always loved and times when I am tested, frustrated with pain and the thoughts than my life is going nowhere I feel Him reminding me to simply trust in Him and His timing.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. - Jeremiah 29:11
By no way is it easy. Its damn hard at times and you wonder how I can be pushed and at times I feel that I am being pushed to breaking point. But my faith has given me good things. A good church with a social group. My inspiration for writing this post tonight is that I've just gotten home from a little social evening. There was no worship or prayer, just general chit-chat but my faith has given me some sort of a social life. I go to church when I am able and an opportunity to socialise with others that takes me away from the medical world and any from my life with chronic illness. Sure it's still there in the background - my should dislocated tonight from simply lifting up my cup of coffee but I had friend to laugh with me at the ridiculousness of the situation I was in and sometimes laughter is the best medicine and my faith is my medicine too. 

Gratitude list:

  • My faith and the great plans God has for me
  • Friends
  • Humour in situations where I could cry

Wednesday 17 January 2018

What's with the spoons?!

Often you will find those with chronic illnesses or disabilities like myself referring to spoons and our spoon count, and no, we are not talking about how many teaspoons we have left in the draw.

The Spoon Theory is a metaphor and is a way of describing what it is like to live with a chronic illness or disability and its limitations.

Where it all started

Spoon Theory was created by Christine Miserandio who has Lupus. She created Spoon Theory as a way of explaining other fine what is like to live with the condition.

Chronic illness and spoons

When you have a chronic illness or disability you have a limited amount of energy - physically, emotionally and cognitively.

With Spoon Theory it gives us a way to measure the energy we have and how we need to spend it as we don't have to bountiful amounts of energy able bodied people have.

Everything we do throughout the day uses energy in some way shape or form - getting out of bed, washing and dressing, making meals, going to work or studying, sorting out your emails, reading a book, going to a doctor's appointment, socialising with friends etc.

Spoon Theory explained

Each spoon is a unit of energy and we have a set limit for the day. Each task takes a spoon away from this daily 'bank of spoons'. So for example:

Daily allowance = 15 spoons

Getting out of bed = 1 spoon 
Making and having breakfast = 1 spoon 
Getting washed and dressed = 3 spoons 
Going to work or university = 5 spoons 
Picking up a some groceries = 3 spoons 
Making and eating evening meal = 2 spoons  (because you're getting tired)
Total = 15 spoons 

Now do you see that you've used up all your spoons and you have no spoons left for the rest of the evening so all you are able to do is lay on the sofa or go to bed early as there's not enough spoons to do anything else like meet up with a friend and you need that last bit of energy you have to get ready for bed.

This is just an average day. If you're having a really good day tasks may take up less spoons, but on a bad day tasks take up more spoons so you have to learn to prioritise. You may have to take the day off from work, or cancel plans with a friend for example so you have all the energy you have to get you through the day and just do the bare basics.

When we reach our spoon limit we experience a 'spoon crash' as we've used up all the spoons we have and we have no more left to get us through the rest of the day and we need to rest, have a nap or take time out.

Spoon Theory & Me

I find it a lot easier to say "I'm running low on spoon" rather than "I'm running low on physical, emotional and cognitive energy". (Though those who aren't familiar with Spoon Theory often give me a quizzical look wondering what the heck I'm on about!)

I was introduced to spoon theory by someone I knew at University who has MS. For a while I wondered what the heck she was on about when she kept referring to spoons and I even considered buying her a pack of teaspoons as I thought she didn't own many at home. Then one day I asked her "what is it with the spoons?' and then I was introduced to Spoon Theory and I've been using it ever since.

Links

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Tuesday 16 January 2018

Stickman Communications and my Pocket Medical File

Stickman Communications © by Hannah Ensor
This is a fab company that I'd recommend to anyone with a chronic illness. Stickman Communications ©, run by Hannah Ensor who herself has Ehlers-Danlos Syndrome (EDS) and Postural Tachycardia Syndrome (POTS).
"Stickman Communications' Mission:To challenge the view that disability is a negative and scary thing, and to create a better understanding and acceptance of disability as a different normal instead."
Hannah has created a wide range of communication cards, badges, lanyards,stickers, clothing, zipper pulls, and other handy communication aids for a wide variety of illnesses and topics such as autism, diabetes, chronic pain, EDS and HSD, PoTS, seizures, mental illness, allergies, M.E./CFS, Dyslexia, Asthma, Tourettes, pacing, relaxations, Fibromyalgia, Chronic Regional Pain Syndrome, sleep and much more.

Using my Communication Cards I have put together my own medical file. (You can buy the dividers and sticky tags from the shop).
in mine I have all my essential information such as a Name and Emergency Contact Card, alert cards such as for moving and handling warning professionals that I have fragile joints, then I have a section of illness info cards which explain my different illnesses to readers, I then have a section on mobility explaining things like "Sometimes I fall. Son't worry, this is normal. I will wait, rest and get up when I am ready." And about my use of different mobility aids and how mobility problems aren't alway obvious. My last section is on communication as I can suffer form speech problems due to migraines or M.E. and because of my dyslexia too, and how I find it hard to follow fast verbal instructions and can struggle with concentration due to fatigue.
Some cards I have made myself, such as the ones explaining FND, and my Pain Score card, medication card and emergency/clinical contacts card.
My little book has literally been a lifeline at times and speaks for me when I am unable to do so and every medical professional who I have shown it to so far has loved it, from my carers to paramedics to my district nurse.
I also own a pack of the Stickman Communications © status squares which I have on my 'Differently Normal' lanyard that also use to communicate.  For example if I'm struggling or running low on energy. Each square is double sided and is a handy little communication aid that I'd also recommend to readers.

For Christmas I got my own "I'm recharging" hoodie which I love wearing.


Links and Contact info for Stickman Communications ©:
*Note: this post is not sponsored by Stickman Communications © 


Second A&E admission of the year - "Sick and Tired of Being Sick and Tired"

So I managed to make it into the the TC today; during Community Meeting which is the first group of the day on Tuesdays my Myoclonic Seizures (involuntary joking movements in my right arm and shoulder). They eased after a while and I was able to rejoin the meeting, but then ever so suddenly I got a very brief aura (pre-seizure feeling) and the next minute I was off the chair and having seizures on the floor. For me one minute I was sat at the table; the next I had two paramedics sat around me.

The paramedics knew me, (though to be honest a lot of the paramedics know me by now). They gave me diazepam which brought me out of my status seizure episode - a status seizure episode is a cluster of seizures that go on for a prolonged length pf time. For me when this happens I swing between Tonic Clonic seizures and unconscious myoclonic seizures; sometimes they can go one for over an hour. They also gave me some Entonox for the pain as I prefer to step-up pain relief rather than go straight for the strong stuff.


Once I got to A&E I was taken to a room and the wait began. You can't be on Entonox for long which is frustrating as it meant that I was left with no pain relief and as stated in previous posts for me I'm in a lot of pain post seizure mainly because of my hypermobile joints. One positive is that I had a good chat with a 4th year medical student and explained to her my complexities and educated her about hypermobile disorders and FND so that felt good so hopefully in the future she will be able to better understand the needs of patients like me. She also took my bloods and took them successfully first time so I congratulated her for that as it took the paramedics today two attempts to get and IV line in.


Eventually the Dr came and he was nice but he was limited on pain relief options which was frustrating as apparently because I've had Entonox I couldn't have a medication called Penthrox (even though I have been able to before in other admissions - again another reason why I feel I need an A&E care plan in place so there's a clear plan on what medication I can and can't have and for my individual needs too). Pain makes me nauseous so he agreed that I could have some IV Cyclizine (and anti-sickness medication) and he also gave me some IV paracetamol which took the edge off the pain but didn't really get rid of the pain completely but that was all he could really give me apparently. My myoclonic seizures then flared up so after a while and consulting with another Dr I was also given me some IV Lorazepam to calm things down which worked so I think that's maybe why else they couldn't give me much else pain relief wise? The nurses where okay too, the nurse that brought me my meds got me a heated blanket and a coffee and put it in a beaker so I didn't end up wearing it. 


So all in all not a bad A&E experience, it's just this pain relief thing that we need a plan for but luckily at home I have what I need as breakthrough pain relief. I got an email form my care agency's nurse Debbie (who's amazing) and she's chasing up my GP and A&E to get this care plan sorted so hopefully I can give you an update on that soon and hopefully no more A&E admissions this month!


A&E has become my norm but I hate going there; I hate the inconsistency in care that I get. No-one really thinks that a 24 year old needs help to get to the toilet or with sitting up or putting a jacket on or is at risk or falls. I'm tired of having seizures, I'm tired of A&E and hospitals. I'm sick and tired of being sick and tired.


As a pick me up when I left hospital I got myself a Costa coffee as a pick-me-up. I'm home now and I'm exhausted but I wanted to to blog as its a distraction form the pain and I know that I'll be tired tomorrow thanks to M.E. and Post Exertion Malaise* but thankfully Wednesday's is one of my day's off from the TC and I only have my carer coming for an hour in the morning so I can have a rest and recharge day. My plan for the rest of the day is to rest, maybe sort out some more of my blog and tonight Silent Witness is on which I enjoy.


My Stickman Communications folder also came in super handy and I'll have to post about that one day too. Basically Stickman Communications produce cards with info about various images but also one like "I have many joint problems, please don't touch me without permission" and " Please keep questions to a minimum. Especially if you want a sensible answer." In it I have all my essential information like allergies/intolerance, a list of meds, contact details etc. It's VERY handy to have and paramedics and nurses love it.


So today I am in gratitude for:

  • The paramedics, Drs and Nurses
  • Free healthcare from the NHS (despite it's flaws)
  • The heated blanket as it was VERY cold in my room
  • The hospital offering Costa coffee with soya milk
  • Stickman Communication who make awesome products
  • Students who can learn from patients like me as they are the future generation


* "Post-exertional malaise (PEM), or post-exertional symptom exacerbation, describes a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity".

Monday 15 January 2018

Blue Monday


"The third Monday of January has been awarded the gloomy title due to a combination of post-Christmas blues, cold dark nights and the arrival of unpaid credit card bills. Supposedly the date was calculated by using many factors, including: weather conditions, debt level (the difference between debt accumulated and our ability to pay), time since Christmas, time since failing our new year’s resolutions, low motivational levels and feeling of a need to take action." *
* Reference: Blue Monday 

It's strange how it is Blue Monday and I'm feeling a bit low today - though nothing to do with Christmas or debt. Well, I've been feeling low for the past few weeks but today I found it hard to face the world and my pain and nausea was getting to me too. So I took the executive decision to call into the the Therapeutic Community (TC for short) and called in sick, which was true. I don't take much time off from the TC except for appointments and the occasionally rare sick day; usually I battle on, even when I've been in A&E until the early hours or had a seizure at the TC. 

I think I needed the day off though as when I got of the phone my nausea was peaking so i took some anti-sickness meds and headed to bed, vitally to watch something on my laptop but i was so dizzy and tired I feel asleep and sleep for a few hours.


Coincidentally today some post arrived from one of my pen friends with 'Mr Happy' on it.

*** UPDATE *** After having a nap and doing some blog sorting I'm feeling a bit brighter and I think my meds have kicked in too. Now I'm going to spend the rest of the afternoon just resting, writing a reply to my friend and watching some TV.


Some tips to beat the blues:

  • Get outside, even if its sat out in the garden
  • Make yourself a hot drink
  • Eat well and drink plenty of fluids
  • Get dressed
  • Connect with friends, whether it me on social media, face-to-face or via pen and paper
  • Talk about how you are feeling 
  • Express yourself, write or draw; even if its just a scribble on a piece of paper
  • If your struggling with sleep try out some sleep hygiene, check out The Sleep Council for handy tips on how to get a better nights sleep
  • Try mindfulness
  • Exercise if you can, even if it just a wiggle (- I know this is particular hard when you have a chronic illness/disability)
  • Get yourself a new hobby, such as learning to crochet
  • Try changing your usual routine

Today I am grateful for:
  • Mail from a friend
  • Having my own bedroom where I can rest and recharge
  • Anti-sickness medication






Sunday 14 January 2018

Lovely Weekend

Weekends are usually hard, physically and emotionally. Physically because I'm usually exhausted from the week that has just been and emotionally because there is a void in the business of the week.

I've always struggled socially but since starting at the Therapeutic Community (TC for short) I've made one friend. That brings my total count of "friends" to two. Sure I have other "friends" like those that I write to and chat to online but my two friends are actual friends that I meet with and feel able to fully share my life with and I know are always there for me no matter what (even if it means being camped out in A&E with me).


So going back to my lovely weekend, on Saturday I met up with my friend from the TC for a coffee. Since she started at the TC we clicked and it made going to the TC much easier knowing she was there too - this was the friend that went to A&E with me the other weekend. So that was nice to get out the house and do something "normal' for a change - I say "normal" because hey, define "normal". Sure we met at the hospital for our coffee but it's close-ish to my house and it's one a good bus route for her, and the do Costa with soya milk and you can't really go wrong with that. To say it was 1pm it was fairly quite and in the cafe you don't really feel like you're in the hospital (unless you looked around and saw the Drs wearing their stethoscopes with pride, the staff in their varying colours of uniforms and patients in their finest NHS gowns with the added IV pole as an accessory to complete the look). 


Then when I got home I had a low FODMAP friendly late lunch and watched an episode of 'Hard Sun' with Dad - a drama we've been watching on BBC. After that I did some tidying of my room and then took a rest and wrote some letters.


Today, Sunday I made it to church this morning which was nice as I haven't been for a few weeks as since moving to the new building the heating was broke and it was too cold and it was making me ill. When I got back home I continued with the letter writing, then took a break and watched another episode of 'Hard Sun' with Dad then went back to my letter writing and then tidied up - usually when I letter write my bedroom becomes a stationary explosion. Then this evening another drama came on which is call McMafia which is also on BBC (BBC have one some good drama's at the moment - my favourite being Silent Witness). I also did some blogging (as you can probably tell) this evening which I'm enjoying. Oh, I've also spent the afternoon online chatting with a couple of people which was nice.


Now I'm just wrapping up and heading to bed. So all-in-all its been a good, sociable and busy weekend. Now I need to prepare for the week ahead which brings its own difficulties...