Monday, 29 May 2023

M.E. Q&A - Questions from Instagram followers

What is the one thing M.E. has taught you?

Who my real friends are. I’ve lost a particular friend who I thought was “my person” (something from one of my favourite shows Grey’s Anatomy) but it turned out they wasn’t the person/friend I thought they were. Now though I feel as though I’ve found ‘my tribe’. A group of amazing people, pen pals and friends who I feel are a positive influence within my life and on my social media. I feel I can turn to these people, talk to them, turn to them with my questions or for advice, have a rant or a ramble and just talk about the things we have in common which has nothing to do with medical stuff at all like books, pen palling, crafting, pets, makeup and nails, home decor and much more. They also fill my Instagram with positive things; some things are medical but it’s done in a positive way with a good balance of medical and just general normal non-medical life stuff.

M.E. has also taught me gratitude. I have a lot thankfulness for everything in my life big and small. A letter or message from a friend, the enablement from my PA/carer to have a hot bath, drinking a nice cup of coffee, going outside in my wheelchair with my PA for a walk, a hug from my Dad, the fact I have my own home (!) these are just a few of many things I am grateful for.

What's the hardest part with M.E?

Feeling stuck in life. I’ve been ill for ten years now and I’ve had little to celebrate. I see people around my own age achieving things like my brother graduating from Uni, doing a masters, getting a job, getting promoted etc and I just go nowhere at all. 

However I now do have something to celebrate as I’m now moving in my own home so I do feel really proud of myself for that.

Loneliness and isolation is also a hard part of having M.E. especially because my M.E. is severe so I’m mostly housebound so I can’t go out and socialise and virtual events are too tiring for me.

What symptoms do you experience with M.E?

A lot of people think that M.E. is just about feeling tired but it’s much much more than that. The symptoms that I experience vary in severity throughout the day and some symptoms affect me more seriously than others. I also have co-morbid symptoms which are symptoms of other illnesses that have been brought on by my M.E.

My ‘main’ symptoms I experience include:

🩵 Hypersensitivity, especially to light, noise (and sometimes touch and smell too).

💙 PEM/PENE - Post Exertion Malaise or Post Exertion Neuroimmune Exhaustion - sometimes even the smallest amounts of activity can bring this symptom on. It’s a delayed reaction symptom for me it’ll come on the following day and you don’t know the extent of how hard it will hit you. Basically after exerting myself I’ll feel generally unwell; as though I have the flu with cold and flu-like symptoms and I will feel utterly exhausted and weak and my other M.E. symptoms will flare up too. It can take a few days or a few weeks or even months to recover.

🩵 Payback is a more instant reaction following doing any sort of activity so pacing and activity management is really important. I’ll experience a flare up of symptoms immediately after exerting myself as opposed to PEM/PENE which is a delayed reaction symptom. 

💙 Pain is a big symptom for me. I feel different types of pain - muscle pain including spasms, nerve pain including neuropathy and intense pins and needles and like electric shock sensations etc, joint pain as well as headache and migraine pain and abdominal pain and co-morbid gastrointestinal problems such as IBS and other issues. My pain is widespread throughout my whole body but my legs are the most painful part of my body when it come to my M.E. pain.

🩵 Persistently feeling fatigued and exhausted which worsens after doing activities including physical activities, cognitive activities or even something emotionally exertive and no matter how much I rest I never feel refreshed from my fatigue.

💙 Sleep difficulties especially for me insomnia - to me I think that when I’m struggling with insomnia it’s because my body doesn’t have enough energy to sleep. I also wake up feeling unrefreshed and often exhausted even when I’ve managed to have a good night.

🩵 I struggle with my cognitive function - this is often referred to as ‘brain fog’ - it involves this like difficulty thinking, planning and concentrating as well as multitasking, difficulties with speech and poor memory.

💙 Flu-like symptoms, poor immune system and generally feeling unwell.

🩵 Autonomic problems - this is problems to do with my body’s autonomic functions. So things like poor body temperature control, poor circulation, dizziness. Orthostatic intolerance is something I really struggle with a lot; I struggle to tolerate being upright for too long and so have to sit down especially with my legs out and also sit/lay reclined to ease my symptoms and prevent me from passing out in the worst case scenario.

Do you have more cognitive or physical energy?

I would say that I’ve always had more cognitive energy but I still have to keep in check what I’m doing and time activities so I don’t overdo it on my activity management and burn out. 

Do you/are you grieving for your old life - how do you cope with this?

For a long time I have grieved for my old life. I’m turning 30 next month and the plan I had for my life isn’t possible anymore which I still grieve for sometimes. I’ve also been academically driven I didn’t have any other life plans other than my education and the career path I’d planned out for my future, so when I became ill and had to leave University and then especially when I realised that returning to education wasn’t possible it was really hard. I really struggled to know where to place myself in the world and I felt stuck whilst the world and everyone else around me still where going places and it was hard especially when I saw people doing the things I wanted to be doing. I didn’t feel angry or envious as that’s not me, I just felt a sense of deep seated sadness and grief for the life I had lost and I felt like that for a long time.

What helped me cope was counselling and talking to a therapist; also friendships as well as just not focusing on the past or the future but just on the day in front of me and getting through that. I tried to celebrate the little wins because to me they were the big wins. I’ve also developed and grew my feelings of gratitude for all the things in my life big and small and that’s really helped me cope and realise what’s important in my life now and to look at what I have to be grateful for rather what isn’t there which is my pre-illness life.

What helps you get through difficult times? What are your go-to coping techniques etc?

Therapy has really helped me get through difficult things. Friendships are also really important to me especially the friendships I’ve made on Instagram and friends through pen palling - some of my friends also have M.E. and though we don’t focus on our M.E. it’s nice that there’s that understanding in the background.

My go-to coping techniques are:

💙 Anything sensory such as my aromatherapy diffuser or kinetic sand etc

🩵 My noise cancelling EarPods along with an audiobook 

💙 Strawberry jelly and vanilla ice cream!

🩵 Letters to/from friends and pen pals

💙 Crafting especially colouring

🩵 Cuddling my heated Warmie zebra ‘Zoë’

Are you bed bound or able to move around a little and make it to the sofa and things?

I’m not bed bound but I spend most of my day on my bed as I’m most comfortable here. I have a profiling bed and a hybrid airflow mattress so I can adjust my position easier and independently and it’s much better for managing my orthostatic intolerance. I can move around like getting to the bathroom and through to my front room/kitchen area which is just a few steps away. Since I’ve moved to my bungalow it’s been much much better for my mobility as there’s a way less walking required and no stairs to contend with so it’s made a big difference for me. I really struggled to get around at my parents house and I was very restricted a lot of the time.

My ability to get around also depends on good/bad days. On my good days obviously my mobility is better but on my bad days I’m mostly restricted to my bed just so I can manage my symptoms and be safe and comfortable.U

Do you get muscle wastage/do you have exercises to do to stop that or help circulation from sitting lots?

No thankfully I haven’t experienced muscle wastage so I don’t have exercises to prevent that from happening. I do some daily physiotherapy exercises to help keep me mobile as ‘if you don’t use it you lose it’ - the exercises are also to help with my other illnesses too. However I have to be careful not to exercise too much as with my M.E. I struggle with exercise intolerance and it can worsen my M.E. if I do too much physical activity of any kind.

I once went through Graded Exercise Therapy (back when it was recommended as a treatment for M.E.) and it made my M.E. become much worse. 

💙 In a 2019 NICE survey 67% of people with M.E. who did GET became physically worse afterwards.

In terms of circulation I have regular massages with a lady called Hollie who treats people with health conditions so her massages aren’t like spa treatments but more focus on my symptoms so in with my massages she works on helping my circulation.

Your decision and process of moving to your own home?

My decision to move house was based on two things. The first thing was the fact that I’m turning 30 this year (in a few weeks to be exact!) and I just felt it was time to get my own home despite all the challenges I have with my health. The other factor was that back at my Dad and stepmum’s the house just medically wasn’t suitable and didn’t meet my needs and I was struggling to live there and I couldn’t have the adaptations I needed because it wasn’t my home to give permission for certain adaptations etc. to be installed.

I was worried a lot about the idea of living alone because of my health but I just hoped I’d get the care and support I needed to enable me to live on my own. Thankfully I got the care hours I needed but I’m struggling to find PAs so I’m using a care agency at the moment.

The property I’m in now I was actually number 4 for so I didn’t think I had a chance and forgot about it and then a couple of months later I got a call asking if I wanted to view it. I was a little unsure at first because of the lack of storage space and the kitchen space but I’ve totally made it work for me and I’m now happily living here. Some days are really difficult I won’t lie and it’s not helped by the fact that I’m still yet to find additional PAs so my care situation isn’t ideal but at least for now I’m getting to use my care agency that I like as opposed to the not-so-great agencies adult social care use. It’s just a case of waiting and keeping my fingers crossed that a PA will come along asap as in the evening I’m meant to get 1 ½ hours but I can only financially get ½ and hour with my agency. (I pay a contribution towards my care but if I go over budget I have to pay the excess and my agency isn’t the cheapest. A myth is that a lot of people think that when you get your care through adult social care it’s free when actually you have a financial assessment to see how much you should pay towards your care.)

Since moving here I’m slowly getting the adaptations I need to live independently. This ranges from the grab rail next the bath so I can sit myself forward on my own I’ve also got one by the back door, I’ve also had a key safe installed and I’m waiting for a step for the back door. I’m also waiting for my OT (Occupational Therapist) to bring me things like a perching stool and I’ve bought other adaptations myself.

I chose to get social housing as there was more security and the rent would be lower plus I’d be able to adapt the property. I couldn’t really imagine a private landlord wanting their tiles being drilled into to fit a grab rail. I’ve had support from a housing charity so I’ve had a housing support worker every step of the process. They set up my profile with the council to bid on properties. Medical evidence was submitted and I was instantly put in the highest band based on medical needs as my current property wasn’t suitable for me. Both me and my support worker was surprised I’d been instantly put in the highest band but it did make things easier as when I bid on properties I was more eligible for them. I was only able to bid on properties I was eligible for however after a while I made myself eligible to also bid on properties reserved for older people based on my medical needs so this did mean that there where more properties open to me that I was eligible to bid on.

Finding a new home wasn’t easy as most one bed properties where I live all had wet rooms. Because of my hypersensitivity with my M.E. showers make me feel like I’m in a super charged jet wash which is really physically painful plus I get cold easily in showers causing my muscles to go into spasm causing me more pain.

I had a total nightmare with the wet room situation (long story) but basically it felt like the assumption was that all elderly or disabled people needed or would need wet rooms so even when a property was advertised as having as a bath (perfect for me) whilst it was vacant a wet room would be installed or the advert would be out of date.

I hope that’s answered the question about the process of moving - I was a bit unsure how to answer that question such as how much detail to go into and give.

Sunday, 21 May 2023

M.E. Guest post by Katie

I'm Katie, I’m 18 and living with Very Severe M.E. I live my life in one room, always in my bed. Not leaving it for months at a time. Everything, literally everything, happens from here. 

As you can partly imagine it affects all aspects of life. Although I’m not sure you can know just how much. 

I first got properly ill at 13 and from there have lost more and more of my life and being. My friends. My education. Hobbies. Sports. Joy and happiness. My identity. And the experiences you could expect a teenager to have. Parts of my family have drifted as they have been forced apart by lengthy hospital stays and the requirements of my care. Family who live further afield and can’t visit nor can we. And guests in the house are far too much for me to cope with. It isolates not just me but my whole family. 

There is not an inch of my life or how I live that M.E. has not affected. The more I lost the ability to go to school the more I lost my friends. But that was on them and their choices to start with. Teenagers argue and fall out anyway. And then when we’re ill we’ve pretty much all experienced accusations of faking. It’s a hard combination. I’ve wondered why I either wasn’t good enough, what my illness changed for them, or how they didn’t know me well enough to know I was always wanting to do everything I could. The same when it comes from relatives or beliefs it’s in our heads, exaggerated or made up. All those ridiculous things we are told. 

It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot. 

Aside from that even those I’m still friends with and would love to talk to or see I’m unable to due to my health. It has gradually trapped me and hidden me away more and more until it’s like I have ceased to exist in the outside world. Neighbours never see me leave the house, because I don’t other than in an ambulance, school people haven’t seen me there in years. My school years have passed now with no qualifications. I’m housebound but can’t even interact with my whole household. No family dinners, movie nights or outings. 

My identity was my passion for drama, education, and having fun with friends. My love of riding horses, hockey, the sunshine and outside. Enjoying shopping, dressing up and doing my hair and makeup. Spending time with family, young cousins and family friend’s children. Always being busy and having something to do. I miss it all hugely and have gone through so much grief as a result. 

But I have gradually gained a new identity, new friends, and new joy. My life is so unbelievably different but despite the horrific symptoms it’s not all awful, there are small pieces to find in the mess of it all. And perhaps my identity now is more meaningful. My identity is my writing and voice about this illness and experiencesr. It is the strength it has taken to get through these years and be here. It is the power when I stand up to health professionals and fight for what I need. The ability to advocate and metaphorically stand strong. But it is also my strength in my weakness. The tears I’ve shed and the support I’ve needed. Learning to be vulnerable and rely on others, be a team. 

And when I say everything happens from bed that includes some nice things. Crafting and starting my own little small business, yes, I need a carer to help but it’s something I never did before. And creating my platform and sharing my story. 

My friends are powerful sufferers of this illness who are better than the ones I’ve lost. I’ve known true support and care. I am in awe of them and their strength. Reminded every day why I write and why I share on social media. I’ve created stronger bonds with some family due to the level of care and interaction. M.E. and all it comes with has ingrained itself into my life in a way that will last long after this illness does. Some may take this to say my illness is my identity. Or the idea that we want to stay ill for some unknown secondary gains. It’s not. It’s just affected everything including my identity. Perhaps it’s not even the illness but just me. I’ve changed my identity as I’ve adapted to my situation. 

My life has drastically changed because of M.E. But I’m Katie, currently 18 and suffering, and I believe I will get to live again one day.


Katie raises awareness of M.E. and her lived experience of the illness on her Instagram account @katie_andm.e

Tuesday, 11 April 2023

Welcome to my new home!

 I have some exciting news to share, I finally have my own home!!

It’s a little one bed bungalow - secretly I much preferred bungalows over flats (- imagine having a deaf OAP neighbour who always had the TV or radio on full volume, it would have been a nightmare for my noise sensitivity!) AND this bungalow has a bath.

I was really struggling to find a one bedroom property with a bath and a times I was getting really low and fed up and disheartened as I kept being let down.

So basically because of my M.E. I really struggle with hypersensitivity so being in a shower feels like I’m being high powered jet washed - ouch! Plus I get cold in showers which triggers my muscle spasms - double ouch!! 

Locally there’s one big main housing association and they were the ones letting me down. I was bidding on properties that said it had a bath and as I was in the highest priority band for housing. I often won the bid on properties which supposedly had a bath but after I won the bid on the council housing system HCL I’d be told that the bid was skipped only for me to later find out that the information was out of date and the property actually now had a wet room. This happened about 11 times so you can see why I got so disheartened after each time this happened over and over again. Then there were the properties that whilst vacant the housing association installed wet rooms. Personally I feel there just seemed to be an assumption that disabled and elderly people needed wet rooms. When I asked them about the lack of properties with baths and wet rooms being installed the solution I was given: put an inflatable bath in the wet room!? Yep that was the serious solution that was given to me and my PA.

Me and my housing support worker was just in the process of trying to get me eligible for 2 bedroom properties when I got a call about this bungalow. 

When I bid on it I called the housing group that own the property (it’s different the the one I was writing about above) to put my case in for it but they said to just call the council and then when I became number 4 for the property I gave up on the idea of the property so I didn’t think it was to be but in fact it actually was! About 6/7 weeks after I bid in the property however I got a call and I was told that 3 people had turned it down and was I still interested in it and if so would I like to view it. 

There’s no storage space so nowhere to store my wheelchair but I’ve found a spot near the door to put it and my bedroom is quite big so I have enough room to make it work to store my medical supplies.

The kitchen area isn’t the best but again I’ll make what I have work and it’s just me living there and I’ll see how I go once I’m living there. One solution Dad gave was to get an external kitchen unit to extend the space and I’m going to put a shelf up too. The kitchen area is part of the living room and the living area is a good size plus I can have my craft area that I REALLY wanted to have so that’s a bonus.

Dad and Mandy have finished the painting now. The doors, skirting boards and window sills have had a freshen up. In the living room I’ve gone for a paint colour called ‘nutmeg white’ along with a pop of turquoise paint. Originally I’d expected to have a separate kitchen and living room so I’ve had to merge the two rooms together as I’d bought a couple of turquoise items for my kitchen so I’ve had to incorporate turquoise into my living space. It will be quite a colourful room once my IKEA button rug is down and my Poang chairs and footstool are in there along with my other furniture. In my bedroom I’ve got the same colour as I have here as I love the colour so much and one wall has glitter mixed into the paint for a subtle shimmer.

I’m not going to need to buy much new furniture thankfully as I own a fair bit already. I’ll need to buy my craft desk which I can’t wait to set up and organise all my craft belongings into it and I’ll need a desk mat, desk chair and floor mat (for the chair). In time I’m going to save up and buy a small desk to put in my bedroom and have my first ever makeup desk. I’ll also need storage and bits and bobs for the bathroom. Then other miscellaneous items like a laundry basket, clothes rack, bins etc and my white goods of course. I’ve bought already most of my kitchen bits and pieces. At first I’ll just have the essentials but in time as I save up and add things and I settle in it will become more my home and I’ll put my own style on the place.

I really want to make a success of living on my own. I know I’ll need some care but it’ll be nice to have to quiet time with the bungalow to myself. I do have my anxieties about living alone: managing my seizures and my bad M.E. days, getting the care I need, managing my health in general and it not going downhill, managing financially and not feeling too isolated to name a few things. I want this to be a new and positive chapter in my life as for so long I haven’t felt like I’ve had much to celebrate because of my health.

Monday, 27 February 2023

10 years on

This February marks ten years since I became chronically ill.

Sure I've had health problems all my life, I grew up with an acute curvature of my lower spine (hyper lordosis) and had care for that as well as treatment for my mental health as a teenager and also my now diagnosed Ehlers-Danlos, a genetic hereditary condition was always there just never known about. However non of my health problems as a child including my mental health including anorexia which I was seriously ill with never really affected me and my life to the extent and in the same was as my health issues that I've been dealing with over the past ten years.

Over the past ten years I have lost so so much. Friends, academia, a future career, my dream career, my independence, volunteering, the ability to look after myself, my mobility, my freedom, dreams and plans and much much much more. I have grieved and I am still grieving for the life I have lost and I feel lost, like where is my place in this world? Thankfully I'm now just beginning to get some support from a psychologist at UCLH to help me re-find my purpose and what is meaningful to me so I can move forward in life.

How it all started...

 It started back in 2013 with a case of the flu which I never recovered from. After then I was tired a lot, I struggled to walk and ride my bike around campus and to places like the shops and to dance for as long as I used to be able to. I found it hard to take in what was said in lectures and seminars and to get essays typed up and to do my set reading even with all the support of my academic support worker. Then one day I had a seizure, and then after that I had more.

By this point it was February and my health was in pieces. It came to the point where I had to leave University where I was studying nursing and return home. I thought at the time that this would just be a temporary measure and I even reapplied to a University to return to my studies. I've always been academically driven and my only plan for my life was academics and my career. My drive was to eventually become a child psychotherapist. I didn't get back into University but they advised me to do some further study which I did but it took me longer to complete the course than usual and I didn't get the grade I wanted and what my tutor thought I'd get so I felt pretty low. I could have retaken the exam module but by this point there was no way I'd cope doing it with the time frame.

I'd gone to my GP several times about my overwhelming levels of exhaustion and other symptoms. Each time my GP would diagnose me with Post-Viral Fatigue Syndrome and I just needed to rest and I'll soon be feeling much better. However I never did yet I still kept being told the same information.

Then on the 4th July 2017 I finally had my long awaited for neurology appointment with Professor Edwards regarding my FND (Functional Neurological Disorder). Until this appointment I'd not been diagnosed with anything other that this Post-Viral Fatigue Syndrome. Professor Edwards specialises in FND and confirmed that I did have FND - a neurological disorder where the brain's messaging system doesn't work properly. For some people this can cause just one symptom or for others like me it can cause multiple. So that was my first solid diagnosis since 2013, four years on,

As well as Professor Edwards confirming my FND diagnosis he also said I had M.E. but little more was said about M.E. so I was left to go home and Google this diagnosis myself and work it all out alone as no further referral was made. Professor Edwards also picked up on my hypermobility and referred me to Dr Kazkaz, a rheumatologist who specialised in Ehlers-Danlos Syndrome over at UCLH.

I eventually saw Dr Kazkaz and after some tests including genetic testing I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and because of the secondary problems my EDS was having on different organs of my body Dr Kazkaz referred me to different specialties within UCLH as well as the Pain Management Centre. I've also seen consultants and other departments at my local hospital too.

I honestly see my health as a full time job and that is a blog post I plan to write about soon.

Over the years my health has declined but not in a linear way, it's been a gradual up and down process.

Back in October 2019 - March 2020 I was in a specialist unit for people with FND and M.E. (though they mainly focussed on my M.E.) Some of the treatment health like learning activity management and developing a daily plan as well as being around the other girls with had M.E. and FND too but other aspects of my time there didn't help like Graded Exercise Therapy so soon after coming home my M.E. started to worsen.

Then in April last year I had surgery and that really crashed and set-back my M.E. and I haven't really recovered since then. However the surgery was a success.

Where I'm at now...

I still feel grief for the life I should have had and have lost but each day I try to find a focus for the day such as what I'm going to do and I just take each day at a time; each activity at a time as my health can change so rapidly. 

It's taken me a long time but I now feel like I've found 'my tribe'. My only way of socialising is on Instagram and through letter writing to friends and pen pals and I now feel since last year that I have a good network of people around me that are good and positive as sometimes the chronic illness community can be a competitive and unhelpful place.

I'm also now looking to find my own home and I can't wait to move out and have my own space to design and put my stamp on. I've already got a growing Pinterest board with a section for each room planning out my new home!

I have a good network of support from an array of different professionals from doctors, nurses, housing support workers, other professionals, Personal Assistants, family and friends.

So though the past ten years has been tough to say the least I don't regret becoming ill. It's made me a stronger and more resilient and grateful person and the person I am today.

Tuesday, 14 February 2023

Guest post by Rebecca writing about FND

“About 1 month ago I was diagnosed with FND, Functional Neurological Disorder. My initial reaction was relief and empowerment, finally, after 2 years of unexplained symptoms I was given a name for thief that had stolen my life away. However, I soon discovered that the letters ‘FND’ are accompanied by contradictions, at times prejudice and frequent misunderstandings. In short, the diagnosis felt somewhat like being thrown a fantastic gift, grasping it for just a brief moment before watching it slip through my fingers and smash on the floor. 

Certainly, the same emotional cycle of optimism, hesitation, disappointment and embarrassment followed. Optimism that a diagnosis would lead to answers, being heard and understood. Hesitation followed, caused by confused and contradictory explanations. I felt disappointment in the reaction of health professionals and lack of support provision and finally embarrassed by the assumptions, invasive questions and shocking stigma attached to the diagnosis. 

Both a blessing and a curse, FND was a common disorder that no one had heard of, an enigma of disability, real, but “not real”. I quickly discovered, my journey hereafter was going to be an unusual struggle, finding health, respect and rationality again. 

Thankfully, I also discovered I wasn’t completely alone! A few super strong and brave people were not only battling life with FND, but also battling the misinformation out there. Sharing knowledge and cultivating respect for people with FND. These voices, although few, provided clarity and confidence. Pulling others, like me, out of the ambiguity and creating a place of solidarity for them.

My hope, arriving in this strange new place, is that more people with FND will be empowered to voice their experiences, to shake off the offensive outdated language used around FND, and to deepen empathy within their communities based on knowledge and understanding. It’s time for FND and those suffering, to be understood, accepted without bias and listened to! Fighting Negative Discrimination!”

What is FND?

FND is a problem to do with the brain’s messaging system. It’s a bit like when you’re in a car an you go to press the break pedal but insteadc the indicators come on. This is what happens in our brain; it tries to do one thing but the messages get tangled up and misfire resulting in a wide range of different symptoms.

  • For more information about what is FND and links to further resources visit my page on FND here

Tuesday, 31 January 2023

Origami bookmark tutorial


You will need a 15cm square piece of paper (plain or patterned), washi tape and scissors

Face your paper pointing like a diamond

Fold in half - make sure you make nice crisp creases on all your folds

Fold up the right quarter to meet the top point

And do the same on the other side

Unfold the last two steps and fold down the top point to meet the middle

Fold up the right side again

Tuck the point underneath to start forming a pocket

Do the same on the other side

Now you just need to decorate with washi tape and happy reading!

Tuesday, 24 January 2023

Make time to rest

Rest is so important especially when you have a chronic illness or disability. Making time to rest can really help with fatigue and other symptoms such as brain fog and pain.

For some people, like myself I need to build regular rest periods into my day but others may find that they just need to rest when they've over done it or on bad days or if they haven't slept well.

Working out how best to rest my mind and body has been a journey of trial and error. For some people they rest by watching television or listening to a book but for me that's too stimulating. Those two activities for me still require a low level of attention and use of cognitive energy and I consider them to be 'low level activities'.

In my other posts you may have heard me write about my 'daily plan'. This is my schedule for me day which I developed with my Occupational Therapist and it helps me manage my M.E. It mainly consists of during the day alternating between activity (normal level and low-level) and rest periods ranging from 30-60 minutes (though my activity limit is 10-30 minutes). 

I find for me making regular time for resting really beneficial. It just allows my mind and body to pause periodically so that I'm able to keep going; if I didn't I would just crash.

The best way's in which I have found best is to listen to mindfulness meditations and soundscapes though I know this isn't for everyone. I find for me I really need to 'switch off' to allow my mind and body to just stop for a short while whilst I rest.

If this isn't for you and you find you have to still be doing something to rest some restful things I recommend include:

  • Colouring
  • Reading or flicking through a magazine
  • Taking a hot bath or shower
  • Watching easy watching TV shows or YouTube videos
  • Listening to the radio, a podcast or an audiobook
  • Easy to do crafts like knitting or crochet
Rest has proven health benefits including supporting mental and emotional wellbeing, easing pain, supporting the immune and cardiovascular systems and decreasing blood pressure.

Some apps I'd recommend for mindfulness, meditation and soundscapes are:

Tuesday, 17 January 2023

Fundraising for M.E.

After the success of my Christmas card fundraiser and after a lot of thought about it's do-ability I have decided to continue to sell my handmade cards and fundraise for two M.E. charities: Smile for M.E. and Action for M.E. (who I fundraised for at Christmas).

I had to think a lot about whether I should go ahead with the project and the way I done it this time I've set it up to be more M.E. friendly as how I did my Christmas fundraiser really crashed me. I also had to factor in my health and the fact that *hopefully* at some point I will be moving. However I think the way I've worked it I can alway make a notice to say that I'm taking a break for whatever reason.

I also did a lot of research and thinking into charities but deep down I felt that I wanted to support M.E. charities - everyone has their own charity or charitable area that is meaningful to them for whatever reason and though I do have other illnesses I feel a closeness to want to support the work of M.E. charities. This is partly because M.E. is probably the illness that affects me the most; I also know how overlooked M.E. is and how little understanding of M.E. there is as well as how little funding M.E. research and just M.E. in general gets.

Smile for M.E.

Smile for M.E. is a small UK charity and they send out 'Smile Parcels' to people with M.E. as well as care givers to people with M.E. They also hold special events such as for Carers Week and 'Merryn's Smiles' - special Smile Parcels to people with Severe M.E. in memory of Merry Crofts who sadly passed away from the illness. Smile for M.E. was started in response and in recognition of the isolation and loneliness people with M.E. often experience. You can find out more by visiting their website or checking out their Instagram.

I chose to support Smile for M.E. as it's a very small M.E. charity and I love the idea behind what they do because M.E. is such an isolating and lonely illness as especailly for some like myself with Severe M.E. I'm cut-off from the outside world as I'm mostly housebound. So when I was nominated as received a personified Smile of a few gifts to me it reminded me that I wasn't forgotten about and that I was loved and cared about. I'd like to help the charity by fundraising for them so they can buy gifts to include in Smiles and bring the same feeling to other with M.E. or those that care for people with M.E.

Action for M.E.

Action for M.E. is another UK charity that takes action to raise awareness of M.E. and to take on the ignorance, injustice and neglect faced by people with M.E. They also provide targeted information, support to health care services as well as providing advocacy work to people of all ages with M.E. The charity also works closely with professionals and policymakers to improve for people with M.E. access to appropriate care and and support. Action for M.E. also collaborates with scientists and clinicians to help more research forwards. For example the DecodeME DNA database study.

In the past I've collaborated with the charity to help raise awareness through videos and articles on their magazine.

The reason why I wanted to continue fundraising for Action for M.E. is because of the support they offer to people like myself with M.E. The charity provides a wealth of information and resource to people with M.E. of all ages, care givers, the public and professionals. They offer support and advocacy such as their 'Listen to M.E.' helpline - but it's open hours are limited and I hope that more funding will extend this to help reach more people with M.E. The charity also supports children and young people with M.E. Also at Christmas they run a project called 'Christmas Angels' which means a lot to me and like with the helpine I hope that fundraising will help to keep this project running.

Where to by cards?

You can buy cards through my shop Instagram account - there's an explainer on there about the project and how I've organised my cards and how they can be purchased.

Tuesday, 10 January 2023

My top 10 favriorite books of 2022

 1. 'A Gil Behind Dark Glasses' by Jessica Taylor-Bearman

This is the first of two books by Jessica. In this book Jessica starts with a documentation of her life before she become unwell with M.E. (Myalgic Encephalomyelitis); then when she become ill and her rapid decline into very severe M.E. and the subsequent 4 years she spent in hospital due to the severity of her M.E.

The book took me on an emotional rollercoaster ranging from upset to anger. I'll admit that at the start of the book when Jessica is talking to her diary 'Bug' about the start of her M.E. I did cry because of the similarities in our story. Both Jessica and I became ill with M.E after having the flu from which neither of us recovered from and as Jessica talked to Bug about her overwhelming fatigue and leg pain (which I was struggling with at the time of listening) I cried and couldn't listen anymore.

I listened to parts of this book but I also read parts, some from the book other times on my kindle app. I have the sequel 'A Girl in One Room' which doesn't come in audio format but this year I'm determined to read the sequel.

2. 'The Language of Kindness' by Christie Watson

I've gotten through a lot of medical career books but this particular book was quite special compared to others. Christie doesn't write about the hilarity of the nursing profession but what is at the heart of nursing: kindness. I found this book really touching to listen to; to hear Christie talk about her career as a children's nurse, most of which was spent working in paediatric intensive care. In her book she talks about how she came to become a nurse and what it is to be a nurse. She shares her stories of all her and her colleagues acts of care kindness and what is at the heart of nursing and how this is being lost. It truly is a heartwarming book that I would highly recommend.

3. '163 Days' by Hannah Hodgson

This book documents Hannah's longest hospital admission of 163 days. The book is split into three parts.

The first part is the book and I loved the unusual format. For each day of Hannah's admission there was a written piece alongside medical note documentation.

The next part of the book was a collection of Pallative 'After Care' poems and the third part of the book contained previously published poems and a written thanks. These poems I want to come back to when I feel I understand and can grasp the concept of poetry better, though I have read some of Hannah's other poetry pamphlets and have enjoyed what she writes and the topics Hannah writes about.

4. 'Everyday Sexism' by Laura Bates

Laura Bates is one of my favourite authors and I love every one of her books and I've listened to a few of her books this year but I chose this book because it's slightly different to the usual feminism books.

The book comes from an online project that Laura set up to give people a voice to share their experiences of sexism, misogyny, discrimination, harassment as well as sexual and domestic violence and assault. People, men and and women of all ages from all over to world can share their experiences on the Everyday Sexism Project.

From that online project Laura wrote this book taking inspiration and submissions from the Everyday Sexism Project. What I like about this book and Laura's other books is that she includes men in her books and in this book she includes submissions to the project from men.

5. 'Holiday SOS' by Ben MacFarlane

I thoroughly enjoyed this book; it was like no medical career book I have ever come across nor did I realise that this field of work existed. Ben MacFarlane is a doctor and his job is to repatriate injured Brits from their holidays. I found it fascinating to and out the different injuries people have sustained on holiday and how Ben and sometimes a nurse from his team gets them home, hopefully without a hiccup on the journey, but that doesn't always happen, and sometimes he's called to help he own patient and and another flight passenger at once! As well as flying patients home on normal planes he also has flown patients home of medi-copters and luxury private jets.

It's defiantly a different book from your average GP working in an average GP practice writing about their day-to-day life as a doctor! Plus at the end of 2022 I discovered a sequal where Ben goes to sea to work on a cruise ship as a ship's doctor (which is also a good read).

6. 'In Your Defence': Stories of Life and Law by Sarah Langford

I actually listened to this audiobook twice last year. It's written by a defence barrister and she writes about her career climb from law school through to becoming a barrister which was quite interesting to understand that. Each chapter follows a different case in which she has defended. I liked how varied each case was in terms of the crime or crimes that the accused was on trial for. The author explained the different laws really well so that they where included in the book but where understood well by the reader. 

It was an interesting and well written book letting you into the life of a defence barrister; how their job works. The author Sarah Langford writes about UK law and a look into different UK law courts and how they are run. She also writes about what it is like to defend those accused sometimes repeatedly of different crimes and the circumstances surrounding them.

I enjoy books that follow different people with different careers (as you can probably tell from this list) so this is a good book if you're interested in reading about law or the life of someone who works in this field.

7. 'Weird Things People Say in Bookstores' by Jen Campbell

I got this book for Christmas last year. It's split into three parts the first two parts are stories from two bookstores and the third part is stories from different bookstores from all over the world.

The book contains little real life stories of strange things people have said in bookstores along with some illustrations to accompany some stories.

Some of the things customers have said to staff are so out there it's hard to believe what has been said is true. For example "is this book edible?" or "do you have a book on how to breath underwater?" or when a bookstore owner asks a customer if they can help them at at to which their response was "no I don't think you're qualified, I need a psychiatrist, that's the only help I need"

8. 'The Girl With All The Gifts' bu M.R. Carey

This book was another totally different book for me be Hannah Hodgson had recommended it on her YouTube channel (I've come across a lot of good books from Hannah's book reviews on her YouTube channel and Good Reads account).

It's took me a while to get into this book and work out the plot but once I got into the book I really enjoyed it. I'm still trying to work out though what the title of the book has to do with the plot of the book however?

9. 'A Perfect Stranger' by Shalini Boland

This was another book that was different for me but it was a real plot twister - a crime thriller/suspense novel (that makes me want to read/listen to more of this genre). I really enjoyed listening to something different and also not knowing where the story was going and the plot twist at the end was excellent!

If you want a book that's a thriller and something that you're totally not going to expect then I'd highly recommend this book.

10. 'In Order To Live': A North Korea Girl's Journey to Freedom by Yeonmi Park

This book was quite different to what I normally go for but it was very insightful. I learnt a lot about life for North Korean people and the political set up there. Yeonmi Park writes about her life in North Korea and her family's escape, and how difficult it actually is to escape and gravelly from country to country before they can get somewhere in which they can claim political asylum. Then once they have finally claimed asylum in South Korea their adjustment to finally being in a place where they are free. It's an insightful book and if you're looking for something different or want to understand more about North Korea I would recommend this book.

Tuesday, 3 January 2023

Positives out of 2022 and Plans and projects for 2023

Over the years I've often struggled at this time of year. I feel that especially due to my health compared to most other people my age my life is pretty stuck, uninteresting and going nowhere and filled with not much else other than my health (or lack of!). But putting my health aside there's a few things to celebrate from the past year. I'm also not a person who set's New Year's resolutions but for 2023 I have some projects and things I want to do.

Looking back on my plans for 2022

So firstly, looking back on last years post with my plans for 2022 let's see what's I've ticked off:

✔️ Committing to my 1 Second Every Day Project (the video is on my YouTube channel)

✔️ Growing my blog and YouTube channel - I did take a blogging break when I had my surgery but I did continue with my blog this year. I've also continued with my YouTube channel - I did reduce how often I posted due to my health but my subscriber numbers continued to grow.

✔️ I finally had my surgery in April

✔️ I found my second PA (carer) Jo (- who is lovely)

What else have I achieved in 2022

✔️ So for a few years now I haven't been able to go to the hairdressers and because I was shielding I couldn't even have my home hairdresser so this year one achievement has been going to the hairdressers to have my hair done.

✔️ I set myself a book goal on Good Reads and I reached that so I upped that and I exceeded that goal and I've worked my way through 97 audiobooks and books.

✔️ On the theme of books one major achievement this year has been to begin reading books again. This may seem minor but I used to love reading and the ability to read books was something that M.E. took away from me so to begin reading books again has been a big win this year. I've read one proper book and a shorter book as well as poetry pamphlets.

✔️ I raised £76 for Action for M.E. selling handmade Christmas cards

✔️ I also feel happy that I've 'found my tribe' on Instagram and through my pen pals and the Chronic Warrior Collective in terms of friends and people who are positive in my life. Many also have chronic health problems/disabilities but it's a healthy and supportive tribe as opposed to the negative "support" groups I've joined on social media in the past.

Projects and plans for 2023

🌈 The first thing is my charity fundraising project I'm going to do. I'm going to continue to sell my handmade cards and raise money for Smile for M.E and Action for M.E.

🌈 I want to read more books

🌈 I want like to do my nails more often - and if I keep this up I'll treat myself to some more Shellac nail polishes. I'd also like to do my makeup more often too.

🌈 I hope to find myself my own home

🌈 I would like to do more random acts of kindness

🌈 I said this last year and I'm saying it again (!) but I want to stick to my photo/bullet journal on a regular basis (hopefully daily)

🌈 I want to get my giant diamond painting finished