Bravery Bottles

Set 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.

GUEST BLOG by Emma on 'College and Chronic Illness'

College with dyslexia, ADHD and Autism is hard enough but when you add chronic illness onto that it can be unbearable at times. I rely on a feeding tube called a Jejunostomy to deliver a special formula into my jejunum in order to bypass my stomach. I also have a PEG (gastronomy) tube in my stomach to vent out my stomach bile as to prevent me constantly vomiting as the bile has nowhere else to go quick enough.

A Jejunostomy is a thin tube that goes through the abdomen and straight into your jejunum (part of your small intestine). I have this due to Gastroparesis or delayed gastric emptying which means my stomach doesn’t empty properly making me vomit when I eat food. With the jejunostomy, my stomach is bypassed and so I can still be fed and stay healthy! The PEG is a tube that goes straight into my stomach that I use to drain my stomach bile. From the Gastroparesis, the bile builds up in my stomach and if I don’t drain it can make me vomit. Previously, I had a PEGJ tube which is like a PEG but has a jejunal extension, so like two tubes in one! However, I had lots of problems with that tube and ended up very weak and put on TPN (Total Parenteral Nutrition). TPN is a formula that goes straight into your central vein via a central line in your neck, chest, upper arm or sometimes your groin. TPN is used as a last resort as it’s very dangerous as central lines can cause sepsis.

Dealing with my learning difficulties is really hard at times to keep up to date with assignments and write the notes up fast enough. Just to understand the context and conversations between students becomes some kind of a mind game. I have an obsession with Lego so I guess a way of explaining it is, I’m trying to build an understanding without; instructions, no base plate and not enough blue 2x2’s. This is all if I’m not distracted by the person in fronts fluffy coat that as hard as it is, I. Must. Not. Touch.

Being surrounded and offered food you can’t eat is a real awkward situation. You don’t want people thinking you’re on a diet or being rude but yet again, not want to wave your tube about and tell them that this is how you eat. Even I know that’s not how you make friends. After a few weeks of the start of term, the questions start coming; “why don’t you eat?” “what’s that tube for” “why do you carry that backpack everywhere?”. With me I went to all three tables and explained everything to them as to prevent repeatedly telling individuals over and over again. After that however, the support I’ve got is amazing and they haven’t treated me any different. If anything, they protect me from other people outside our class, supply teachers and help me to get to places as I have to carry two backpacks. One afternoon my PEG fell out and the student drove me to A&E to get it reinserted! Another time I was admitted to hospital for a week and they came and visit me! I don’t know how I would do college without my class mates. A few in my class work as HCAs in A&E and on wards; so recently I had an epileptic Tonic Clonic seizure in class and they knew exactly what to do! and I’m so grateful for them and their knowledge in that particular situation which could of been very dangerous for me. The paramedics were also pleased with their quick responses. One student has also caught me as I was passing out and on another occasion, sat with me while I was vomiting my guts up as my PEG got blocked and stopped draining.

Are class has become a very open place where Poo, wee, sex, farts, vomit, smelly stomas have all become so natural around us and it’s great and you can get off your mind that question of ‘if your poo last night looked normal’ or if not, ‘what should you do’ etc.. and it’s great!

College is exhausting, despite all the laughs. My body doesn’t always cooperate and I end up missing days due to extreme pain, nausea and seizures. My teachers and class mates understand and support me by taking notes for me so I don’t miss out which is so helpful! There’s a cupboard with a bed in it which is kind of meant to be a medical room but anyways I use it a lot when I’m too tired and need to lie down or have to administer my medication through my tube. All my class mates are fascinated by my tubes and some like to watch me do meds which I’m fine with as it raises awareness for when they all become great nurses!

The relationships I’ve made with these lovely ladies (and Sam) have made College so much easier for me mentally and physically, I wouldn’t still be on the course without them. They gave me loads of lolly pops on my birthday as lollies are one of the only food I can have, they voted me student of the month in October and they are some of the kindest people I’ve ever met. I’m glad to say that my conditions are not going to get in my way when it comes to my education as I have the best support network I could ask for and all the determination I can produce to succeed.

-Emma Shutts

GUEST BLOG by Alex a.k.a. @yourachingart_cfs on Art and M.E.

Hello, my name is Alexandra Baker and I’m a “lovely, left-handed, unemployed lady”, as most of my medical reports state. You know how people joke about how their lives appear a lot more interesting online? Well, thats undeniably true in my case. 

When words fail me, art usually does the trick. When the brain fog makes me physically incapable of expressing how I feel, art can express it for me. When people don’t understand or even don’t believe it, art can show them the truth and teach them. It’s a strange existence being a creative, introverted, twenty-something with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome or M.E). My plans of becoming the next big thing in the world of Graphic Design hit a major roadblock thanks to this debilitating and complex condition. Since then I’ve been trying to find ways of coping and surviving each day as best I can while still holding onto my passion for creativity. That's why @yourachingart_cfs was born. A small corner of the internet where I could keep on creating while simultaneously raising awareness for M.E and chronic illness. 

My artwork normally consists of attacking M.E with relatable, light-hearted and fun content. I often try and turn this very negative experience into a more positive one, resulting in some quirky illustrations and some amused viewers. I’ve said to myself on many occasions that if I can make just one person smile, especially someone who is currently going through an illness of there own, then that's a job well done. Using humour to defuse a negative situation is something I am very guilty of and it’s worked pretty well so far. Approaching M.E with the same sassy attitude has helped me to cope. Making artwork is my way of processing and coming to terms with something that I wouldn’t wish on my worst enemy. It keeps my mind active and distracted and fills in the void where I feel I’m unable to participate in ‘real life’. It gives me a taste of being productive in this deeply upsetting situation where any activity, no matter how small, is it’s own mountain to climb. 

Discovering the ‘chronic illness’ and ‘M.E’ community on Instagram was the best thing I ever did. I found so many like-minded people who help and support each other. Although many of us are confined to our houses or even beds, through the power of the internet we can all connect and share our experiences and feel less alone. I hope that sharing my own journey and art will help to bring much-needed awareness. I aim to give people just a spoonful of comfort in knowing that it’s ok to be a lovely, left-handed, unemployed, introverted, creative, sassy, twenty-something woman who is also an emotional and physical wreck with Myalgic Encephalomyelitis and has a much more interesting life online’. Or is that too specific?

Big thank you to Naomi for inviting me to guest blog.

Hugs and spoons x

P.S. Alex's website can be found at www.yourachingartcfs.moonfruit.com and you can find her on Instagram at @yourachingart_cfs

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

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

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

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. 

Pain Clinic - Injection Time

This afternoon I had my spinal 'Trigger Point Injections' appointment with the Pain Clinic. I had them from my T-spine (middle of the back)  upwards and into my shoulders as this has been the most painful part for me in terms of my back and spine. I asked about hip injections but that's not something they offer but when I next have a 1:1 appointment I'm going to ask them if they can refer me for them to somewhere that offers them such as the hospital or my team in London.

Trigger Point Injections are injections of local anaesthetic and steroids into painful muscles. They work to give relief from painful or tight muscles that irritate the nerves surrounding them which causes pain in that area.*

I don't particularly find the local pain clinic helpful. I find them a bit too generic and a bit wishy-washy when it comes to the services they offer in the 1:1 sessions. The other week I emailed Dr Kazkaz, my rheumatologist to see if she could recommend a more specialised pain clinic as an in between until I'm well enough for the programme at Stanmore so I'm waiting to hear back from her on that and I'm also planning on emailing Professor Edwards (my neurologist) and asking him about getting a referral to more specialised pain clinic too.

Going back to today TASL (Thames Ambulance Service) picked me up on time today for a change and as usual the crew where very helpful. I was in the middle of packing my bag when they rocked up (normally they arrive late so they look me by surprise). 

Once I got to the medical centre I wasn't waiting too long to be seen and the staff where great. The injections was slightly painful as local anaesthetic doesn't have much affect on me unfortunately but I just did some deep breathing exercises and it was my third round of injections so I was familiar with the procedure and this time I didn't faint which was a bonus. The nurse who was chaperoning me was also lovely and kept chatting to me to keep me in the room. They also managed to do the injections whist I sat in my wheelchair so that helped not having to do all the moving and handling malarky. My blood pressure went a bit low and I went a little light headed but after a cup of Lucozade it subsided. I've not had injections in my shoulder before, only my back but they helped before so hopefully they will give my shoulders some relief too. 

One difficult part of the appointment was when one of the receptionist asked me why I was in a wheelchair (having seen me walking with crutches in the past); I find this a hard question for a multitude of reasons, firstly because its not a straight answer like 'I was in a car accident' which isn't an easy answer in itself anyway, and secondly because my mobility changes more than I can explain even to myself. Part of me wanted to flash her my 'different mobility aids' Stickman Communication © card at her but her tone of voice caught me, as if she demanded and explanation from me as though 'why aren't you walking today because I know you can' sort of way. I simply gave the best explanation that I could, that my "I have a neurological disorder and my brain doesn't send messages to my legs to walk properly so I lose my balance more and I get functional paralysis and also having the spinal injections I knew I would be in a lot of pain afterwards". 

I then called TASL to let them know I was ready to go home - I explained that I was in pain after having some spinal injections and that I have daily seizures and incontinence and wanted to know how long it would be before I got picked up, the call handler checked with the control room and said if no one came in the next hour to call back. My past two trips with TASL, well the last trip I waited 3 hrs but my seizures started and instead of going home I ended up in an 999 ambulance and took a trip to A&E and the time before that I waited 4 hrs to go home and as a result I made a complaint. After an hour and just before I was about to call TASL the crew that brought me turned up, now I wasn't sure whether that was a) a coincidence, b) a result of my current complaint about TASL or c) my explanation of why I needed to get home as soon as possible. The TASL crews are brilliant, letting me take the lead when I need assistance, helping me put on my coat; even making me cups of tea - it's more the bureaucracy that gets to me and the staff too. So when I did make my complaint I did highlight how the TASL crews themselves I have no fault with what-so-ever. I'd also be pretty stuck without the service and find it incredibly difficult to make it to my appointments without them. I have whats called a double crew - so I have one person driving; then I have someone sat in the back with me should I faint or have a seizure etc. Its written in my notes to keep me talking as if I go quiet it means I'm about to have a seizure!

Anyway, I'm home now, a little sore with a cup of tea beside me and my nice scented heat pack that I got for Christmas around my neck which is very soothing and relaxing. My plan for the evening is just to rest, maybe get some letter writing done, have tea, a nice hot bath and then watch Silent Witness at 9pm. 

And hopefully there will be some guest posts approving soon on my blog! I'm really enjoying blogging at the moment; just sharing the mundaneness of life with complex chronic illness and all the other non-medical bit in-between.

* A Guide to Trigger Point Injections

Gratitude list:

• The NHS
• TASL and the crew that assisted me today
• The injections that will hopefully give me some pain relief
• My wheelchair 
• Not having to wait long to go home
• Being well enough to have a hot bath

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

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:

The Mighty - Pacing Yourself Throughout the Day With Chronic Illness  

Pacing - Action for M.E. 

Quick Guide to Pacing for CRPS and Persistent Pain 

How to Get More Done When You Have MS: Pace Yourself! 

Pacing and Goal Setting 

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

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

The Spoon Theory written by Christine Miserandino

Happiful: What is the Spoon Theory?

Using Spoon Theory to Explain Chronic Pain

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