Looking after your mental wellbeing over the holidays

The holidays can often be a difficult time, especially if you struggle with your physical and/or your mental health. Here are a list of things to help you look after your mental health over the holidays:

Plan something lovely for Christmas Eve and New Year’s Eve 

Christmas Eve and New Year’s Eve can be two days that are the most difficult. You may have a lot of anxiety on Christmas Eve about how Christmas Day will go and how you’ll cope. On New Year’s Eve you may be reflecting on the year that has been and the year ahead and be struggling with many mixed emotions.

Making a plan ahead to do something nice for either or both of these dates mights be an idea to help you cope and get through those days as well as having something to look forward to.

You might plan a whole day or just a small part of the day, it’s up to you and what other things you have going on on those days. - Always remember too that it’s okay to sit out of events over the holidays if you need to look out for your physical or mental wellbeing.

You could do something like have a cosy PJ evening and have your favourite meal and/or dessert. You could get a takeaway or cook something or buy in your favourite flavour of ice cream alternatively you could make a special hot chocolate with cream and marshmallows and have this while you watch a box set or a film. You could also do your nails and have a go at some nail art. Or alternatively if you wanted to do something in the daytime you could go to somewhere special to you like a park or the beach and go for a walk or a ride (however you travel) out in the fresh air.

Plan some moments of ‘Me Time’

Self-care isn’t selfish; it’s important to spend time on yourself. Planning moments of ‘me time’, whether it be 5 minutes, a hour or a whole evening can really help with emotional wellbeing. 

Some things you could do are:

• Read a book or listen to an audiobook 
• Sit quietly with your favourite hot drink
• Spend time with a pet (if you have one)
• Have a DIY facial 
• Paint your nails
• Watch your favourite box set 
• Listen to music or a podcast 
• Do some crafting like colouring, card making, crochet, diamond art etc.
• Doing your makeup or a nice hairstyle 

Have some screen free time

These days we live with our hands attached to us and on average adults spend 6 hours and 40 on our phones a day with 2 hours and 20 minutes being the average time spent on social media. Research has shown that this time spent social media does have an impact on our physical and mental health.

I know from my own experience that the less time I spend on social media the better it is for my mental health and I don’t actually miss social media if I haven’t logged on for a few days. I personally would rather write a letter to a friend or message a friend if I had to use my phone. 

One way you could look after your mental wellbeing could be to have some screen free time away from either social media or your phone completely. Alternatively you could set up an app timer to limit time spent on social media or what I’ve done is delete the social media apps from my home screen. Especially over the holidays you could use your screen free time to do other things like making thank you cards to give out in the new year to everyone who has bought you a gift, or you could spend the time with your family doing things together such as playing a game or watching a film or you could get last minute jobs done like wrapping gifts.

Spend time outdoors 

Spending time outdoors does wonders for our mental health which research supports.

I know since I’ve got my Batec and being able to go out for a ride with it in the outdoors more often has really benefited my mental health.

Obviously the weather isn’t the greatest this time of year but wrapping up and going for a walk or a ride (if your a wheelchair or mobility scooter user) when the weather is nice even for 5 minutes as often as possible can really benefit your mental health.

If you struggle with the cold you can get thermal hat, scarves and gloves and thermal coats. For wheelchair users you can get wheelchair cosies (mine is very thermal and warm). You can also get reusable hand warmers.

Get plenty of sleep

Getting plenty of sleep is so important for our mental wellbeing. Often when you’re struggling with your mental health it has a negative impact on your sleep. You might struggle to get off to sleep instead you may lay awake worrying about things or just find you have insomnia. Alternatively you might have broken sleep or unrefreshed sleep where you’ll still feel tired when you wake up in the morning.

If you have physical health problems you might find you struggle to sleep because of symptoms like pain, or if you have limited energy and you’re very fatigued you might find it hard to sleep because your body doesn’t have enough energy to sleep. You also might have unrefreshed sleep too and wake up feeling tired too. This can impact on both your physical, cognitive and mental health.

Some things to do to help with sleep are:

• Avoiding screens before bed so doing an activity like reading or laying and listening to a book or podcast before bed
• Having a hot milky drink at bedtime 
• Having some sort of bedtime routine where you get ready for bed and then settle down at the same time and do your screen free activity until you’re tired and ready to sleep 
• Wake up at the same time each morning and have a small morning routine 
• Get ahead of your pain before it becomes your pain levels are really difficult 
• If you can’t sleep don’t fight sleep - if you can get out of bed do this for a short period of and do a screen free activity until you feel able to sleep - if you can’t get out of bed do something in bed until you feel ready to sleep
• If you just can’t sleep at all just laying in bed and doing something like listening to a book, podcast, music or the radio is still allowing your body to rest as often just laying with your thoughts can be difficult for your mental health 

Keep it in a journal

Journaling can really help with emotional wellbeing; instead of bottling feelings up you can write or draw in a journal how you are feeling an it can be a good emotional outlet. 

Writing or drawing (or both) in a journal can also help you work out your feelings and analyse them to make sense of them. You can put how you’re feeling into your journal and keep it in there almost like a container for how you’re feeling. Doing this is especially helpful as the holidays can be a more difficult time of year and can bring up a lot of difficult thoughts and feelings.

You can also make lists in your journal to help you organise what’s in your mind; this really helps if you struggle with anxiety.

The 2025 jar project

So how does the jar project work?

You and someone close to you exchange jars - I’m doing it with my best friend. So I’ll her jar and she’ll have mine. I’ve just bought some 1litre plastic jars as they’ll be easier to post and they’re a nice size to fill.

Over the course of 2025 (or any year you’re doing this project) fill the jar with things like

• Positive quotes
• Messages of encouragement, hope or positivity
• Achievements you want to share with your jar buddy
• Uplifting messages or song lyrics or poems etc
• Anything else positive that you can think of

I also encourage you to decorate your jars.

Just before New Year exchange jars and give your jar back to the person you have made the jar for.

New Year can often be a difficult time for our mental health so the purpose of the jar is to have something to open at New Year and to look through all the positive messages and quotes and achievements your jar buddy has written for you (or drawn) and to have something uplifting to look through.

It’s okay not to feel okay

Mental health is a topic I’ve recently realised I need to write more about. If I feel okay writing about physical health then why shouldn’t I feel okay writing about mental health. (Maybe it’s because mental health holds more stigma?) Our mental wellbeing is just as important to see to as our physical wellbeing. The same goes for medication: medication for or bodies and for our minds - they’re both just as important to take to be well and to not to feel ashamed of taking or admitting that we take.

Recently I’ve been struggling more with my mental health, to the point where I’ve needed help to manage things to be safe and well - Again there’s there shouldn’t be any shame in admitting that we’re getting support for our mental health; we freely talk about seeing a doctor or nurse or physiotherapist so it should be okay to say that we’re seeing a therapist or psychiatrist or community mental health nurse. 

Anyway, as well as the professionals supporting me my Dad and best friend have been amazing throughout this blip that I’ve been going through and I can’t thank everyone for their support. I’ve also got back in touch with my old therapist and I’m seeing her again which means a lot and it will be good to just have a space to simply be and just let out.

This blip just came on though a mixture of social stressors and my physical health being a bit worse than usual. I do find that the my physical and mental health impact upon one other so when I’m having a bad day physically my mood gets lower. On top of that when I haven’t slept well that affects me both physically and emotionally too, and also when I’m not well physically and especially emotionally I don’t sleep well making things worse. 

 I’ve struggled with my mental health most of my life but for quite a while now I’ve been managing really well and I’ve not needed much support apart from a recent medication increase to help with my anxiety (I’d been waiting for the appointment for nearly a year) I’d also had a couple of sessions with my therapist again in the new year because I was struggling to cope due to anxiety but a few sessions was all I needed compared to the year and half of therapy I’d had the previous time I’d had therapy with the same therapist. It’s good to know that she’s [the therapist] always there for a ‘top-up’ of therapy and it’s always with the same therapist plus the last time and this time when I’ve needed a top-up I’ve gotten a session within a week - the perks of private therapy. It does cost me but it’s discounted as I’m on PIP but it is a medical expense just like a physical health expense but I get what I need which I wouldn’t get with mental health services (MHS) locally plus my sessions aren’t time limited and I get the type of therapy that suits me which is creative therapy which again MHS all don’t offer.

Whilst I’ve been going through this mental health blip I’ve been doing a lot of diamond art which I’ve found helpful to do. My concentration hasn’t been great and sometimes I struggle to distract myself and just listening or watching something wasn’t enough so when I called for support someone suggested doing colouring or diamond art with the television or my audiobook/podcast on in the background. I found her suggestion really helpful initially I did some colouring and ordered a diamond art kit and now I’m on my third kit! I’ve found mini projects easier as they seem more doable compared to a giant picture; I now need to find what to do with all the key rings and bookmarks I’ve made! - I’ve just bought some setting glue so I can fix down the gems and I’m thinking of selling them and putting the sale towards my fundraising? I’ve gifted some of the things I’ve made to friends and a bookmark to my Dad for Father’s Day.

I find engaging my senses helpful for grounding me too. So I’ve had my aromatherapy diffuser on, my Mathmos protector on (it projects like a lava lamp onto my ceiling - I’d love a galaxy protector) and I used to use lollies but I’ve discovered vegan fruit pastels. I also have my fidget ring that I wear or I’ll have a tangle toy. I have other things in my self-care box too like a calm jar, colouring bits, a micro Lego block type kit to built and other things - most of my self-care box is based upon the contents Megan put in my Recovery Shoebox* and my self-care box is the one Megan made for me. My therapist and I also made a self-care jar with little self-care notes in there to remind me of things to do or things that make me smile and feel positive.

Trigger Warning:

*The Recovery Shoe-box Project was started by Megan who has now sadly passed away by suicide. The project was personal to Megan as she struggled with her own mental health but she helped so many people through the project. In her memory Megan's friends and family continue the project to reach out to more people with mental illnesses to help them with their recovery.

Personally recovery for me is learning to live with my mental illnesses. I rather them not be there but depression and anxiety will always be there but it’s about me learning to be the one in charge, that’s what recovery looks like to me and inevitably I’ll have good and bad days and blips and wobbles but that’s okay. It’s okay to not be okay all of the time.

Product review: Fidget rings

As someone who deals with anxiety I really love my fidget rings. I prefer the design I’m wearing in the photo personally but there are other designs of fidget rings out there as well as fidget necklaces. 

What I love about fidget rings is that they’re a lot more discreet to use compared to other fidget items I’ve used in the past such as tangle toys; they’re also a bit more ‘grown up’ compared to fidget toys too. I can easily fidget with my ring and you’d hardly notice what I’m doing. Fiddling with my ring really does help as I find it helps to keep my hands occupied when I’m anxious and with my OCD I find it helps calm my compulsions which get worse when I’m anxious.

You can get many designs of fidget rings, I have this daisy one and another silver rainbow one and a gold one so I can pair them with my outfit of the day. The main places I’ve bought fidget rings from are Etsy and Calm Collective - If you buy from Calm Collective a portion of their sales goes towards supporting UK mental health charities too so good for you and good for the charities.

As well as fidget rings being good for anxiety disorders, they can help with other conditions such as ASD and ADHD as well as stopping habits like nail picking and biting.

I’d highly recommend fidget rings; if you’re looking around to buy them you can also search for anxiety rings as another name for them. They help in so many ways and there are so many different designs and styles out there including necklaces like I mentioned and you can buy them in many different sizes including some styles and sizes for men. They are hugely beneficial and look lovely at the same time.

It never gets easier... Eating disorders and what needs to change

Fact: eating disorders have the highest mortality rate of any mental illness

As a teenager I was very unwell entrenched in an inner battle with anorexia. I spent time in several inpatient stays. What saved me was psychotherapy though my eating disorder is still something that stays with me to this day.

On Sunday I heard of another person I knew closely from one of the inpatient units I was in who had passed away. 

I now now 6 people who have passed away from eating disorders, some have passed away from the illnesses itself others have ended their own life. Some where still very much unwell when they passed away others where well but had lasting damage to the body. Even my body has taken a toll from my own eating disorder.

Every time I hear of another life sadly lost it still hits me hard and never gets easier. At 28 I feel too young to know too many young lives taken too soon.

I still feel that more needs to be done to prevent these tragedies. Still far too often early intervention isn't happening; something I've been part of campaigning for for a lot time. More awareness is also greatly needed in places like schools and by primary care professionals such as GP's to aid early intervention and to support people like GP's to manage those who first start to show signs of developing an eating disorder. Also, something I felt was also missing was the care, or lack of, when I was discharged. I was seen by mental health services but they weren't specialists in eating disorders.

There needs to be better access to specialist eating disorder services - I know from personal experience that even when there is a specialist eating disorder service it is hard to get help from them. Often their main acceptance criteria is your BMI which is totally wrong. If you've been discharged from an impatient unit but need ongoing support post discharge your BMI will be within the normal range as well those who are in the early stages of developing an eating disorder will also have a normal BMI and for some types of eating disorders their BMI will remain within the normal range. So BMI shouldn't be used as an admittance criteria for help and support from an eating disorder service.

Goodbye Hayley

I also feel that the media need to be more responsible and thoughtful of how they approach the subject of eating disorders. There are many things that I find unhelpful when I read media reports around eating disorders and I can speak from personal experience when working with the media myself to help raise awareness of eating disorders. Awareness and facts about eating disorders need to be the focus; not a person's weight or a photograph of them when they were quite unwell.

Finally I just want to end this post in memory of Hayley and everyone else who is no long here. Hopefully the inquest for Hayley will help bring improvements for those with eating disorder and something will come from her loss.

Kintsugi 金継ぎ - Acceptance of physical & mental brokenness

I've been listening to a mindfulness meditation series on Headspace about self-compassion. In each meditation the narrator gets you to repeat to yourself the following affirmations:

"May I accept who I am", "May I love myself as I am" and "May be at ease with who I am"

At first I found this hard to really take in. I don't love, accept or feel at ease with myself. Part of this was about my disabilities as it's taken me a long time to accept my chronic health problems into my life. My disabilities have made it hard to love myself as I am now and equally to be at ease with myself and my disabilities and all that comes along with having disabilities and chronic health problems.

It can be hard to love a broken body and mind; especially one that can't be fixed. So in the absence of being able to fix my brokenness I must learn to love myself as I am and accept my brokenness and also be at ease living inside a broken body and mind.

Kintsugi, 金継ぎ, is the Japanese art of putting broken pottery pieces back together with gold — built on the idea that in embracing flaws and imperfections, you can create an even stronger, more beautiful piece of art.

The Kintsugi bowl I made

Something I did a while back with my therapist was to make a Kintsugi bowl. It was a kit my therapist had bought for me, which was such a lovely3 thing for her to do for me and was so kind of her. 

The small bowl was whole. I then had to break the bowl, which I tried to do artfully, ensuring that the bowl was broken in a particular way. With my own physical and mental brokenness there was no artful way in which I have become broken.

Once I felt happy with my artfully broken bowl I set out to fix it, but to fix it in a way that would make the bowl more beautiful for having been broken. I mixed up a combination of glue and gold powder to make a golden glue to piece back together my now broken bowl. When I reflected with my therapist about how I glued to bowl back together my therapist pointed out to me about how I glued the bowl back together (therapists have to analyse everything (!) but it can be helpful at times and even I'm analysing in this post!). I didn't rush putting my broken bowl back together I carefully applied the glue, like how I care for my own broken pieces. I applied the amount of glue that I wanted. Remembering back to this therapy session I remember how I wanted enough glue so that it was visible and showed through the cracks of the differs ceramic shards. It was a carefully chosen process. With my own brokenness some of my cracks are invisible; my pain and exhaustion and struggles with mental illness cannot be seen but at the same time I also have scars on my body that are visible but I choose to hide.

The whole process of braking the bowl and then putting it back together made me think of my own body and mind's brokenness. I feel like throughout my whole life I've been broken in one way or another and smashed apart as I've gone through my life both by other people around me but also due to physical and mental illness.

In therapy over the years I've often stated how I feel that I'm broken into a million pieces and 'too broken to be fixed'. Unlike how I artfully broke the bowl I've never had any control over how my mind and body has broken and because of this it's been difficult to piece myself back together. Therapy I would say is the thing that's held my brokenness the most over the years. Sure inpatient and day patient treatment (both psychiatric units and medical admissions) has kept me safe and in all honesty alive, but even my times in hospital have added to my brokenness from so of the things I experienced as a patient. Then there is the medication I take both for my physical symptoms and also my two psychiatric medications. Medication just enables me to manage my physical and mental health symptoms to allow me to just get through the day. 

Therapy isn't for everyone but for me over the years therapy (most of the time) has been what has held me together the most to stop my broken pieces being blown away in the wind.

Going back to the kintsugi bowl I did with my therapist a few months ago massively helped me. It was such a simple thing that me and my therapist did together but it really helped me to accept my physical and mental brokenness but how in time I can piece my life back together. I will never be whole and unbroken again; I will always have to deal with being physically and mentally unwell. However out my brokenness and with time my broken pieces will come together and what I've learnt over that time in life and in therapy I can turn my brokenness into some better and create something positive. I can use my brokenness for example to help others, like I hope I do through my blog and what I share over on my YouTube channel and also through things like voluntary work and the support I give to my friends and others around me and hopefully in the future when/if I'm able to work. I can use my lived experience to my advantage and turn negatives into positives which I feel I already have done.

As well as helping others inwardly I can turn my brokenness into something beautiful. There is no cure for my physical and mental illnesses but as I was putting my kintsugi bowl together I realised that in my own self I can develop a better attitude and learn to accept my brokenness and learn to love myself including the broken parts and also to live and be a ease with my brokenness. By doing this I can start to feel whole, glued back together with gold.

I keep my kintsugi bowl next to my bed and put random bits on bobs in it but every time I see the bowl it reminds me that in time my body and mind can become like that bowl, broken but whole held together with something beautiful.

Mental health & disability

Recently I decided that I needed to address mental health more here on my blog. It's something I've shied away from possibly because I've had experiences where my illnesses where not fully understood and where mistaken for being psychosomatic or that I'd over reacted turning a twinged hip into one that has dislocated. (Note: having hypermobile Ehlers-Danlos my joints do dislocate a heck of a lot ore easily, so no I don't have to be in a car crash for my hip to dislocate). In all honesty when healthcare professionals think I'm 'making it all up' it's really upsetting and I don't feel like my very real and very physical illnesses are believed and are poorly understood and at time it's makes me question myself. Having rare illnesses or poorly understood diagnosis's is often really hard. I know the medicalisation of my life and my life with the conditions I have often better than most doctors, especially when you live in a small town. Sometimes talking in medical terms makes professionals think that I've been on WebMD instead of living with chronic health problems and because my illnesses are poorly understood I've often not been given the care I  need; this is especially the case in A&E.

What staff can do is listen to me and let me use my expertise by experience and learn that a 28 year old may need help with certain tasks most people my age can do for themselves. Also just ask me what would help me the most like turning the lights off in the room and keeping the noise level to a minimum and ensure I am comfortable and have the tools to communicate to name a few things. Also along with that with the new NICE guidelines I hope that staff will follow the new guidance for the care patients with severe M.E may require as I find out of all my illnesses the hospital environment flares my M.E up the most.

Now, back to mental health. My struggle with my mental health precedes becoming chronically ill and now my depression and anxiety are exacerbated by my chronic health problems and disabilities. 

Being chronically ill/disabled is pretty much a full-time job. All the time without a break you are dealing with symptoms, bad days, medication times, appointments, chasing up professionals, sending letters and emails, making phone calls, ordering medication and other medical supplies, endless waiting for so many things - the list goes on. There is so much more to having chronic health problems and disabilities than meets the eye.

For many people as well as their physical health it deeply takes a toll on their mental health unsurprisingly. 

Everyone has mental health and it's important that we look after our mental wellbeing as much as we do for our physical wellbeing.

Since becoming ill I've found a gap when it comes to mental wellbeing. When I developed depression and anorexia as a teenager I was able to access psychotherapy and other care. However when I became chronically ill there was and is little emotional support to help me deal with being chronically ill and little of it has come from the NHS and never from mental health services.

I became ill in 2013 and was officially diagnosed in 2017 with FND and M.E - my other diagnosis': hypermobile Ehlers-Danlos Syndrome, PoTS and a few others all collectively being my 'main' conditions followed shortly after when I was referred onto other consultants. Even after then after being given  name to my illnesses there wasn't a massive shift in the help I was receiving physically let alone for my mental wellbeing. It wasn't until 2019 when I when into a specialist ward for my FND and the severity of my M.E that I received some sessions wth a health psychologist. In these precious sessions it was the first time I was able to talk about and work on how my health was affecting me.

There is health psychology services, there's even one at our local hospital. The specialist ward I was on tried to refer me as part of my after-care following discharge but the service only accepted those with certain diagnosis' and non of mine where on their list. Plan B was for a psychologist from our local mental health services to see me with support from the hospital's head health psychologist, who from what I was told was interested in 'my case' (gosh I hate that term, I just feel like my oversized hospital file as opposed to a real person with whatever is in said oversized file). That Plan B never came to fruition. It felt like my mental wellbeing wasn't important to them. I also felt that the support was denied from both health psychology and mental health services because I didn't fit into a nice neat tick box - I didn't have the right physical ailment and neither did I have a sufficient enough mental health diagnosis (despite my diagnosis of clinical depression).

However, positively, upon discharge in my after-care plan I was also referred to a Social Prescribing service and they where able to refer me to a counselling service which they had a pot of money for. Reflecting on this this has been the better option. 

Counselling isn't for everyone but for me medication alone doesn't work alone. Now I've been seeing a therapist (and there's no shame or weakness in seeing a therapist or indeed taking medication for your mental health) it's really helped. It's helpful to have someone from the outside who's just there to listen, support me and help me see things in a different way (and how it's all confidential too). I can talk about how down I get when I'm stuck in one room, or how out of control I feel or how I get 'sick and tired of being sick and tired' or how I wish I could quite my disabled full-time job and also the ability to grief for a life that's been turned upside down.

I think there's a lot of awareness around how our mental wellbeing can be affected by lots of things - job loss, family breakdowns, bereavement, being a victim (or more-so a survivor) of crime etc. However I don't think that many people attribute chronic illness and disability to poor mental wellbeing and I think more needs to be done about this. For example more health psychology services and them accepting a wider range of illness to be directed to their service. I also think that GP's, consultants, nurse specialists etc need to become more aware of how someone with a chronic illness or disability may as a result of their health may be struggling with their mental wellbeing. I know within the new NICE guidelines for M.E that CBT - Cognitive Behavioural Therapy - is now recommended as a support tool but the problem with that is that for some, like myself, CBT isn't the right sort of therapy for everyone and other types of therapy may be more effective.

I'm so grateful to have access to therapy as I know for some it isn't something they are able to access. I think mental health and wellbeing within chronic illness and disability also needs to be talked about more and considered.

Lastly I just want to say to those who are chronically ill or disabled that it's okay to not feel okay; we're allowed to be upset, depressed, bereaved, angry, frustrated, fed up and every other emotion named and un-named. Also don't feel afraid to talk about how you are feeling emotionally - your mental wellbeing is just as important as your physical wellbeing; speak with your GP or your consultant or your social worker as they may be able to help. Also talk to family or friends or even a helpline. As good as it is to talk to my therapist I find it good to talk to my friends who also have chronic health problems as they 'get it'. 

Also importantly and I can speak from personal experience on this point is to live outside the bubble of your health problems. My friend once shared this quote "your life is like a piece of cake and you have ten portions, but only one portion is your health". It is so important for your mental wellbeing to yes deal with your health problems but to not have them as the central sole of your life and existence. When I realised this and started to focus on all ten portions of who I am it massively has helped my mental wellbeing.

Let's talk about Loneliness

   - Marmalade Trust -   

This week is Loneliness Awareness Week; it's a topic, especially as a disability blogger, that I feel needs talking about. 

As the image from the Marmalade Trust says, everyone will feel lonely at some point but not everyone experiences loneliness.

It's a bit like depression. Everyone has felt a bit low at some point in their life but not everyone experiences or goes of to develop clinical depression.

This year I wanted to write and share with you my own loneliness. Being house and sometimes bed bound I have faced a lot of isolation and loneliness since I became ill. 

I only leave the house usually when it is necessary such as for medical appointments, so little chance to socialise. Very occasionally I do go out for fun things such as a drive-thru coffee trip as I did recently with my Dad on the last Bank Holiday Monday. 

Leaving the house has to planned, I rest for days before just to cope and then usually I have limit my time out and then once I'm home my body just crashes from the burnout of going out.

I only have one local friend but I haven't seen her in person for at least a year and half due to my health worsening. A friend coming round to the house is still exhausting for me, talking and listening tires me out and I just wish that my body and mind would allow me more time with my friend and I wish even more-so that I could travel to meet some of my other friends who I have gotten to know over the years.

My main comfort from loneliness is in the form of letters from friends and being part of the Chronic Warrior Collective.

Hearing from friends through a letters gives me that connection to the outside world. I love hearing what my friends having been doing and about their lives. For me letters fill that loneliness gap in my life; they remind me that I am not alone and that I am loved and cared about. Equally replying to letters also eases my feeling of loneliness and I know that for some of my friends who I write to that my letters will equally ease their own loneliness and isolation due to being house/bed bound themselves due to their own challenges with their heath.

Equally if you know of a friend who is experiencing loneliness and isolation for whatever reason - it could be due to illness, bereavement, a relation breakup, those shielding during lockdown, people who live alone, moving home or to University as a few examples. Reach out to those friends; let them know that you are thinking of them and that you are there for them. You could write to them or even just a text goes a long way to let someone know that they are thought of.

Here is some advice from Lets Talk Loneliness on what you can do to ease your feeling and experience of loneliness:

(This is just a brief summary but if you click the link above ⤴︎ it goes into more detail)

⭐️ Keep in touch with the friends and family around you 

⭐️ Join online groups, these could be forums, social media groups, virtual get togethers on video link (some charities and have moved their face-to-face support groups to become virtual groups which is great especially if your nearest support group is still a long way to travel to. For me I've found this great due to me being housebound.) - Some religious groups have also moved their get togethers for worship via video link.

⭐️ Help other who are experiencing loneliness

⭐️ Contact helplines that support those experiencing loneliness 

Link to organisations & charities:

⭐️ Marmalade Trust - The organisation that leads Loneliness Awareness Week
⭐️ Lets Talk Loneliness 
⭐️ WellbeingInfo.Org
⭐️ I Will - Loneliness in young people
⭐️ Scope - Disability charity // Loneliness search

Some online groups and forums that may interest you:

⭐️ Chronic Warrior Collective - social club

⭐️ Scope online disability forum

⭐️ Sane, mental health online form

⭐️ Beat, Eating Disorders - message board

⭐️ Gingerbread online forum, for single parents

⭐️ The Mix, online support for young people under 25

Public Health, Not Public Shaming - A Campaign by Beat

Beat is the UK's leading charity that supports those with eating disorders and those that support them such as family and friends as well as professionals.

Beat's new campaign 'Public Health, Not Public Shaming' is around the new governments announcement in a plan to encourage weight loss. Now whilst this is a good thing to help get the public more healthy and making better decisions about their health which will improve health and wellbeing. It will also in turn ease the strain unhealthy lifestyles have on the NHS.

The new measures laid out by the government include introducing a weight loss app and also increasing the publication of calorie labelling in places such as cafés, restaurants and takeaways and fast-food outlets. Whilst this is good, what I feel is missing is the public education of what is a "healthy" amount of calories to consume when browsing the menu - a bit like how the traffic light system works on food labels with green being a healthy amount of calories and red being a high amount of calories in that portion so people will understand and consider consumption of that particular food item.

What I also feel is also missing is the consideration of the many people in UK who are living with and trying to remain in recovery from an eating disorder.

I've written here on my blog before about my own experience of anorexia and now even though I am in a well state of recovery from my eating disorder even I can struggle at times. Eating out can still be a stressful situation for me and faced with the numbers [calories] on the menu it may possibly leave me feeling rather flustered when choosing what to eat.

Now I'm in a much better place to manage my eating disorder but if I where to take myself back 10 years I found eating publicly challenging enough without being faced by calories on the menu even when looking at my list of safe go-to foods and knowing that there where apps for weight loss defiantly would trigger my spiral downwards aiding my anorexia.

Previous Government anti-obesity campaigns have been ineffective in reducing obesity. However they have increased stigma, and have put those vulnerable to developing an eating disorder or those currently experiencing an eating disorder at risk. 
As one eating disorder sufferer highlighted: “My eating disorder makes me, and many others, susceptible to taking these messages to the extreme.” 
Beat recognises the importance of reducing obesity, but it is vital that the public are not shamed into losing weight in an attempt to solve this problem.. - Beat

Update

Since starting to write this blog post there has been n update from Beat in regards to the Public Health England's planned weight loss app.

"Public Health England have now taken steps to update the app to help ensure that people with eating disorders and people who may be vulnerable to eating disorders do not use the app." - Beat

The flaws with the app are still that those under 18 and those underweight could still use the app and knowing from my own experience of having anorexia you become a great deceiver and when there is a will there is a way. So on the app you could possibly falsify your age or BMI/weight to still be able to use the app and even if you are stopped from using that app there are probably many other apps that can be used in its place.

Help for Eating Disorders

If you or someone you care about are concerned bout eating disorders, (and remember you don't have to be underweight to struggle with one) you can always initially speak with your GP or contact Beat.and look at their resources on ther website to better understand eating disorders, the different types of eating disorders and spotting the signs that someone my have an eating disorder. Beat's website can be found here.

Beat also have a helpline

📞 Helpline - 0808 801 0677

📞 Studentline - 0808 801 0811

📞 Youthline - 0808 801 0711

The helplines are open every day of the year 

9am - 8pm during the week 

4pm -8pm at the weekend and on bank holidays

→ Calls to this helpline are free from landlines and mobile phones within the UK and do not appear on itemised bills

There is also a 1:1 web chat if you are unable to get through on the phone.

Alternatively you can email

Adult support email inc concerned adults/parents or professionals e.g. school staff

💻 help@beateatingdisorders.org.uk 

Student line

💻 studentline@beateatingdisorders.org.uk 

Under 18's Youthline

💻 fyp@beateatingdisorders.org.uk 

Mental Health and Chronic Illness: Mental Health Awareness Week

I think I'm one of those people that's a bit more emotionally fragile and maybe if I'd been taught to be more resilient it might have helped. I've done a lot of work in the area of children and young people's mental health. I've worked on many projects including the CYP Improving Access to Psychological Initiative as well as speaking in parliament, working with YoungMinds and Beat and the Samaritan's to develop their DEAL project which gives resources to schools to help young people to become more resilient  - a project that I could have really benefited from it it was available when I was younger.

Even now I lack the resilience to deal with the emotional aspect of being chronically ill. Some days I am okay with the fact that I am chronically ill, other days I really struggle with being chronically ill. Heck, just being in constant pain affects my mood let alone everything else. 

Even with medication and other strategies my symptoms are still very debilitating and relentless and in terms of other treatments they are very few options. Some of these options are very difficult to access which I feel adds to the emotional aspect of being chronically ill as I'm not just dealing with the symptoms but I'm dealing with the frustration in struggling to get specialist support. On top of that there is also all the 'medical admin' that I have to do: emails, phone calls, meetings, paperwork, filing etc which is very time-consuming, overwhelming and tiresome.

This year I've tried really hard to reduce the medicalisation of my life. When you're chronically ill it's a full-time job. Sometimes I become 'sick and tired of being sick and tired' and I don't want to be ill anymore. Being ill is a full time job and over time you become lost within an existence of illness and you lose yourself.

My friend Ruth one gave this analogy "your life is like a piece of cake and you have ten portions, but only one portion is your health." It's true, being ill is not all I am, it's just part of my life, but sometimes it feels that way. But I'm trying to reclaim myself and make space in my life for the other nine portions of myself (easier said than done some days).

Then there is the comments of 'oh but you don't look sick' - but what should illness and disability look like? On the day of writing this part of the post I got asked by my social worker why I had an advocate and I explained; her response was something along the lines of "but you come across so confident and able to communicate well". I need my advocate because at time I feel voiceless or I'm not being heard, or recently I've struggled with getting my medications and prescriptions organised and I just reached the end of my rope with the pharmacy and my GP practise and I needed someone to help me.

Another recent example was that recently I've been going through a pain flare. This left me a emotional rock bottom, but the mental health crisis worker said should couldn't help me as the reason for me hitting rock bottom what a physical health matter (?!). This left me feeling even more alone as at present with this coronavirus situation much of my professional support network is on hold or vastly reduced down so I'm muddling through much of things on my own and since leaving hospital it's been a struggle.

I often use the analogy of a duck where on the surface I'm gliding along living my life, but underneath I'm paddling like mad just to stay afloat. 

Living with chronic health problems with a lot of unpredictabilities my life is riddled with anxiety and worry. When will my next seizure be? What will I next stand up and faint? Will I have a fall next time I go to the bathroom? Will I be able to get out of bed? How much worse will the pain get? And so on and on with these thoughts and worries. It makes hard just to get on with life.

It takes a knock on my confidence and independence too. I feel like I can't just have a "normal" life.

I feel the emotional aspects of physical illnesses and how this affects people like myself's mental health often gets overlooked. Healthcare focuses on the medical model: concentrating on your symptoms etc yet they forget to ask you how you are and how you're coping or not coping as may be the case.

There's also the isolation. Being mostly housebound I don't get to see a wide range of people. Isolation in itself has been proven to be linked to people's mental health.

I suppose to bring this blog post to an end my main point is there is so many emotional elements (and there are more than what I've just mentioned here) that feed into being chronically ill and that physical health and mental health go hand-in-hand. Care needs to follow more of a biopsychosocial model to meet the whole needs of individuals like myself so we are well not just physically, but emotionally and socially too.

Coping at Christmas

Whilst Christmas is for most people a joyous time for many people it can be a daunting time for some, especially to those that have a chronic illness, disability metal illness or autism. I'm only writing this post from my own experience and I know that each person's experience and ways of coping my differ from mine, but this is was I have to say on the subject.

In ways I do enjoy Christmas; it's a time to see family as growing up with my family living in various parts of the UK Christmas it the one guaranteed time to see and spend time with my family. I also love playing games and again that's a predictable certainty that we will be doing that.

Christmas is just as equally hard in so many ways; some of which you may be able to relate to...

The first one is grief, growing up Christmas Day evening we would always go to my Nana and Grandad's house with the rest of my family; then we lost my Nana and a few years ago my Grandad, and even though time has passed it still feels odd not to have that tradition.

I find the change in my usual routine and the house looking different difficult to cope with. I also struggle with sensory stimulation - flashing Christmas lights on someone's house, so much more to be looked at (such as the Christmas decorations around the house), Christmas music being played everywhere. It's often all just too much for me to cope with and process.

Christmas is meant to be a happy time, but when you're struggling with a mental illness such as for me depression and C-PTSD it can hard to feel happy. When you're around people you have you put on a mask and at Christmas you have to wear this mask a lot lot more and it can wares me down.

Even though I have come a million miles from where I was as a teenager with my anorexia I find the focus on food at Christmas time and then the subsequent New Year dieting craze still a challenge.

Carrying on with the mental illness and wearing a mask there's no days off when you have a chronic illness/disability and with that too you have to put on a mask. I feel the need to have to hide how much pain or fatigue or whatever other symptoms you're experiencing around people and go to that event and this tradition and almost battle with your body to get through as much as you can bare and you're waiting out for when you can retreat to the quiet comfort of your bedroom.

Continuing from that when you have a chronic illness/disability there's also a lot of delegation as to where and when to spend your limited precious energy. There can also be a lot of cancelled plans or downturned invites and feeling of missing out and also not feeling like you average 20-something year old.

There are positives to this though. It's not all doom and gloom. Explaining to loved ones you health problems can help such as dishing you up a smaller portion for Christmas dinner so you don't have a dreaded gastro flare up. Delegation can be difficult but choosing what events you will go to and also how long for will mean that you can have a nice enjoyable time with reduced levels of payback.

Listening to your body is important. You may need to say for example need extra sleep at night and if you do somewhere and you're body is saying it's had enough be kind to your body and go home or to the quiet retreat of your bedroom.

It's all very individual to you but make the most of the good moments, even if it's just for a couple of hours and be around of yourself for managing that.

You might find it helpful to have a mini coping kit. Like this Christmas I know I will find my noise reduction ear plugs and noise cancelling headphones helpful to get some quiet in my bedroom if I'm sitting out of an even downstairs or if someone is paying music and I want a nap. I'm currently in neuro rehab but will be going home for Christmas so I'll have my daily routine to follow as close to as possible (though unfortunately no lay-ins will be allowed!)

Always look for the positives and rather than feeling like your health is preventing you, see your body as something that needs nurturing and kindness and remember that if you can't do something this year it's not a once in a life time opportunity as Christmas comes around every year.

The emotional toll of being chronically ill

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

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

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

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

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

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

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

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

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

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

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

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

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

Mental Health Awareness Week 2018 - Stress

This week is Mental Health Awareness Week and the focus this year is on stress.

"Research has shown that two thirds of us experience a mental health problem in our lifetimes, and stress is a key factor in this. By tackling stress, we can go a long way to tackle mental health problems such as anxiety and depression, and, in some instances, self-harm and suicide" - Mental Health Foundation

Almost everyone experiences stress at some point in their lives - in education, at work, at home, with their health or in relationships as a few examples.

The Mental Health Foundation conducted a survey in 2018 on stress and here are some of their findings:

• In the past year, 74% of people have felt so stressed they have been overwhelmed or unable to cope.

• 46% reported that they ate too much or ate unhealthily due to stress. 29% reported that they started drinking or increased their drinking, and 16% reported that they started smoking or increased their smoking.

• 51% of adults who felt stressed reported feeling depressed, and 61% reported feeling anxious.

• Of the people who said they had felt stress at some point in their lives, 16% had self harmed and 32% said they had had suicidal thoughts and feelings.

• 37% of adults who reported feeling stressed reported feeling lonely as a result.

• 36% of all adults who reported stress in the previous year cited either their own or a friend/relative's long-term health condition as a factor. 

• 49% of 18-24 year olds who have experienced high levels of stress, felt that comparing themselves to others was a source of stress.

• 36% of women who felt high levels of stress related this to their comfort with their appearance and body image, compared to 23% of men.

• Housing worries are a key source of stress for younger people (32% of 18-24 year olds cited it as a source of stress in the past year). 

• Younger people have higher stress related to the pressure to succeed. 60% of 18-24 year olds and 41% of 25-34 year olds cited this, compared to 17% of 45-54s and 6% of over 55s).

For more statistics visit: Mental Health Foundation - Stress Statistics Survey

As someone with both physical and mental health difficulties stress in my life is just something I come to expect and have to live with on a near daily basis. Some days I deal with stress better than other days. Being ill is a big stresser - having to make what feels like a million and one phone calls and emails to gets things sorted; waiting for appointments and test rests and just simply dealing with the illness and symptoms itself, especially pain and lack of sleep are two big stresses for me.

I believe that its normal and in some ways, at times, healthy to be stressed as it gives us that push to get things done and it is what makes up human. But equally when we're feeling stressed its important to deal with it and nip it in the bud before it becomes more serious.

Dealing with what is making you stressed is important, and reaching out to others for help a support is key, whether it be a partner, friend, family member or a professional. It's not weak or selfish to ask for help.

For more help on how to manage stress check out these helpful resources:

• NHS - How to deal with stress 

• NHS - 10 stress busters 

• Self-help for stress

• How to manage and reduce stress 

Body Gossip: 'This one is for you' video

This beautiful video by Body Gossip has been around for a while but I still love it and though during EDAW would be a good time to share it. It's a poetic film staring different famous faces and is about Eating Disorders and fighting back to claim a life recovered.

To find out more about Body Gossip's work click here.

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