Keeping busy whilst you're self-isolating

Being stuck at home can get a bit dull once the novelty has warn off and it can be difficult for those that aren't used to being stuck at home but there's plenty of things that you can do to keep occupied during this period of isolation due to this coronavirus.

Here is a list of things you can do to keep yourself occupied at home...

• Do some online or distance learning such as through your local college or places like Skill Share or the free courses the the Open University offer on a wide variety of topics.
• Do some long awaited organisation and decluttering of your home - I've been going through my craft supplies finding things to donate and making bette use of my storage spaces.
• Skype or FaceTime family and friends, maybe have a virtual coffee catch-up.
• Get creative like drawing, origami, macrame, painting, crocheting, jewellery making etc, or learning something new. For example a new craft you've always wanted to master or a project you've been waiting to have the time to do. I always say that we all have a creative streak in us. There are also colouring apps you can do. 
• Activity books. I like Criss-Cross, word searches, sticker-by-numbers and colouring books. You can do some online puzzles here.
• Get into mindfulness or meditation - there's some good apps out there or there's plenty of choice on YouTube from guided visualisation to breathing exercises or a personal favourite which is a colour meditation. If you don't get along with one thing try something different like for me I'm not too keen on guided visualisation.
• Do some exercise by joining an online class or watching a YouTube tutorial.
• Start learning a new language. British Sign has a time limited offer where you can pay what yo can to learn BSL. BBC Languages is also a great website with free learning to a wide variety of languages.
• Watch films or TV programs. There are plenty of boxsets to watch for free on some of the main channel's apps like BBC iPlayer, ITV Hub, 4 OD and My5
• Read books, or find new blogs to read.
• Listen to music to an audiobook or podcast. BBC Sounds have a great selection of podcasts on a variety of topics and genres. 
• Join virtual groups - someone sent me a link to an online card making class today.
• Join online support groups, some you can just post freely and some are organised chat forums on set date and times.
• Take a virtual tour around art galleries - Google Arts & Culture have a great list here.
• If you're into it, organise you're Pinterest account and find new pins to inspire you.
• Play app games; some you can link up with friends and play virtually. Some app games I like are 1010, 2048, Sneezies and Sneezies Match, Angry Birds and card games.
• Do a jigsaw puzzle. If you don't have any at home you can download some jigsaw puzzle apps.

To those housebound due to chronic illness/disability

This list may also be helpful if you are housebound due to illness and you can adapt to your limits for example I've found that my local college have given me extended deadlines to give me extra time to complete work. 

The RNIB Reading Service also have a talking book library that people who struggle to read due to a physical impairment can access for free. 

Some of the suggestions are more basic too such as app games which can help ease the boredom on a bad day. 

An extra suggestion that is more of a long-term activity is to start a blog or YouTube channel.

Chronic Illness and Identity

My friend Ruth once said: "Your life is like a piece of cake and you have ten portions, but only one of those portions is your health".

For a while now I've seen a trend on people's bio's on social media whereby they list what illnesses they have right down to the mundane and it's almost become a big competition as to who has the longest list. In the new year when I was going through my Facebook account and deleting all the groups I'd joined (and a lot I didn't know that I had joined) I saw a comment from a person who was in the same few groups as me to do with non-epileptic seizures and FND (Functional Neurological Disorder) and on each group this person had posted the number of seizures they'd had in 2019 and then people where replying with the number of seizures they'd had that year. I sort of feel sad that people feel the need to publicly share the number of seizures they'd had or to list their illnesses and create so many posts about being ill. Sure the odd one is fine as it's part of your daily life but sometimes I feel that some posts where unnecessary to make and I look of some accounts of people who have requested to follow me and so many posts are about their health or even if it's not they still hashtag their illnesses.

Instead of being in competition with each other we should be supporting each other and living with health problems isn't easy and it can be very lonely and challenging.

Anyway I can empathise with the chronic illness community, after all I am part of that community. When you're chronically ill looking after yourself and managing your health as best you can it can almost become a full time job and your identity as it feels as though that's all you have in your life to talk about and you can lose yourself and forget who you are. 24/7 you deal with symptoms, you attend medical appointments and go through many tests etc and often it can take a while to find out what is wrong with you which in itself is extremely difficult. Plus when you have an invisible illness as people can't visibly see what you're struggling with which is another extremely difficult challenge.

Because your chronic health becomes your full-time job you often have to put aside the other nine portions of who you are, or your health does. You may loose the ability to engage in hobbies, or you may not be well enough to go out with friends, or you symptoms may be so prevalent it can be hard to function or you get frustrated that you can't do the things you once used to be able to do and so much more. Your health can start to feel like it's your identity as it's all you have in your life and it can be isolating and all consuming. Then people go online and join chronic illness group for support and mutuality which can either be positive or it can become toxic. But those groups perpetuate that illness identity and before you know it your health becomes your identity and it's all you feel you have in your life and it's all you have to post about online and talk about as you spend all day living with your ill health and talking about it online. I'm not saying this is wrong, I've found it helpful to have friends who are also dealing with health problems and it's nice to have someone there who just 'gets it' but it's important to find other things other than health problems to talk about.

I think it's important to share this with the chronic illness community. To let them know that there is so much more to who they are than just a list of illness. I feel health professionals need to approach care more holistically. Far too often the medical model is used which solely focus on the illness but with the social model other aspects alongside the physical aspects of the person are explored: social, emotional, spiritual, cultural for example. I feel by doing this it helps the person to know that there is more to them than just their illness and to explore ways of how they can embrace all 10 portions of who they are and I feel that this will be essential to a person's wellbeing.

As you may have noticed with the re-naming of my blog and YouTube channel I'm trying hard to now focus on those other nine potions of who I am. I acknowledge that the health portion is still there and I have to deal with it 24/7 and I will still talk about it but I'm starting to learn that that one health portion is not all of who I am and there are lots of other things I can focus my life on and write and talk about.

What I'm trying to say is that chronic illness doesn't have to become you're identity but it can take time and help from others.

Send a Card to a Friend Day 2020

Today is 'Send a Card to a Friend Day' (yes it ridiculous how many odd days their are). But I wanted to use today to share how much letter writing means to me and has helped me.

I've been writing for a few years now and I love it. Being ill I'm not able to do much of your conventional socialising but through letters I've met new people and become good friends with the people I write to and I hope to one day be able to meet those people.

Letter writing is my escape. You can lose yourself in creativity making origami butterflies and word searches and quotes etc to put in letters, learning hand lettering, doing little drawings or finding the perfect wording on a card or postcard to say to the person you're sending it to. It's a wonderful hobby.

Some of my pen pals have health problems too and though we can support each other with that it's nice to focus on the other parts of ourselves like what crafts we've been doing or what we've been watching on TV.

I'd recommend letter writing to anyone.

(Image description: pale blue background with a colourful collage of photographs of mail I've sent or received and my notice board which is filled with mail I've received)

2019's One Second Every Day Video [CC]

So last year I did a project called One Second Every Day.

Each day I captured a one second video clip or photograph of something I did that day. Being housebound and not being well of the summer and coming into hospital in October my life isn't that interesting but looking back it did prompt some positive memories and there are a lot of cute clips of Flop (my guinea pig). And just a note from the intro clip, my life is a lot more interesting than making cups of tea and writing letters!

Looking back I realised how medicalised my life had become. Obviously I can't delete that part of my life (though I wish I could), but this year, 2020, I'm making much more of an effort in lots of ways to reduce the medicalisation of my life and focus on the other parts of who I am such as on social media (such as having a massive declutter on Instagram), on my blog and with this year's One Second Every Day video clips.

The video on YouTube can be found here.

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.

International Day for Persons With Disabilities 2019

So as the title of this blog post suggests, today is International Day for Persons With Disabilities. This day first began in 1992 by the United Nations General Assembly.

This day aims to promote the rights and wellbeing of disabled people is all parts of society and to increase awareness of the challenges disabled people all over the world face in many different aspects including political, social, economic and culture.

When I was recently scrolling through the BBC's news app I saw a business article stating that the Office for National Statistics had found that last year the median pay for disabled employee was £10.63 an hour whilst non-disabled employed earnings were £12.11  (you can read the article here). How is this fair especially when you have you factor in the extra costs many disabled people face for things like utility bills, equipment, care, therapies, insurance and more. The disability charity Scope has found that on average disabled people face extra costs of £583 a month and 1 in 5 disabled people extra costs of more than £1000 a month. Along with these finding Scope have found that on average a disabled person's extra costs are equivalent to around half of their income (exculding housing costs). Along with this findings for a disable person money doesn't go as far and on average £100 for a non-disabled person is equivalent to just £68 for someone with a disability. (Scope's 'Extra Costs' Campagn)

How is all this fair?

As well as lower pay and extra costs for disabled there is also the lack of access whether this be physically such as getting into buildings or lack of suitable toilet facilities or social barriers like how many subtitled cinema screenings aren't at reasonable times. There's also the visibility of disabled people, such as using disabled actors for disabled parts in TV and film or in the modelling industry - far too often I see older people being used as models for equipment and aids and it puts me off a times as I think 'I'm too young to be needing this'.

Yes the world has come a long way in terms of the social model of disability (read my blog post on the medical and social model of disability here), but there is still a long way to go.

Nourish You Social Life - Self-Care Week 2019

Looking after our social wellbeing is just as an important part of self-care as looking after our physical and emotional well being.

Being connected to other people is vital, it helps us to feel valued and boosts our confidence and self-esteem.

Some of the things we can do as part of social selfceare is spend time with family and friends like having a games or film night or having a meal together, going to hobby groups to meet new people etc, attending places of worship etc, going out for coffee or a cinema trip or have a DIY paper session with your friend.

Social self-care is important, but also difficult to those who are chronically ill. I know this from my own experience. Being mostly housebound and only really leaving the hose for medical importance takes it toll on my social self-care, especially when you see the same few faces week-in, week-out, but finding other who understand your help needs can help and even when meeting friends in person can be difficult there are alternative ways of still being able to engage in self-care.

Even just sending someone a text or talking over FaceTime or Skype can be a way of socialising with others to was isolation. For me personally I love writing letters, it's a fun and creative way to connect with others and it gives me that social contact I'm not able to do much of in person.

Other things you could do is find a common interest group either online or if you want to try and get out more you could go to your local library of community centre might where they may have some good resources for you interns of finding a group, they may even hold some groups there. This can vary from craft groups, coffee mornings, physical activities like dance or yoga, cookery or gardening.

Self-Care When You're Chronically Ill/Disabled - Self-Care Week 2019

Introduction

Self-care can be more difficult in some ways when you're chronic illness/disabled as 
A) we get so wrapped up in prioritising in dealing with our health and getting through the day and the demands our of our minds and bodies
B) some things like going for a walk or meeting up with friends may be more of a challenge for some people

Sometimes we're so busy trying to keep afloat with managing our health and all that come with it (phone calls, emails, attending appointments etc) that self-care doesn't become a priority and it can be hard to find a space to take time-out. However, self-care when you're chronically ill/disabled is even more important as it supports our all-round welding. But even if you can find 5 minutes each day to do something like for a mindfulness exercise, do some stretches or put on a face mask.

Self-care, even the small things count

Even though we may not be able to do some of the 'big' self-care things, we can sell engage in self-care in smaller and more manageable ways.

Even the small simple things count for example:

• Drinking plenty and eating healthily
• Ensuring you remember to take the right medication
• Going and sitting out in your garden or local park -  you don't need to walk or wheel to enjoy nature
• Take up new things, like find a mindfulness app that works for you
• Do some simple easy yoga at home or get out your physio exercise sheets and put that into your day
• Pick up a new manageable hobby
• Invite a friend or two round for coffee or a pamper session
• Have a movie night
• Take time out from social media

Even if you can't make it out the house or your are bed bound there are plenty of simple low-energy self-care activities you can.

Self-care is very individual, what might be helpful to one person might not necessarily work for someone else. It's all a case of trial-end-error to find what works for you and try not to get frustrated if you keep trying things and they're not for you. You'll find something eventually. It's important to listen your your mind and body and what it needs and what your limits and and it's a forever learning and evolving process. 

Even I'm still trying to figure out what works for me and trying to get into a daily routine of self-care.

So, how do we practise self-care when you're chronic illness/disabled?

1. Recognising and monitoring your own boundaries

Setting and monitoring blundering and learning to say 'no' when needed is an important part of self-care when living with a chronic illness/disability. You can't prioritise if you don't self clear boundaries.

Make it clear to other people around you - friends, family, carers what you can do and when you need help with; for some people this may change day-to-day. Making this clear to others helps others to know your boundaries so they can give you some independence but support you were and when needed to take the pressure off, and also so you don't get pushed beyond your boundaries. 

2. Reviewing our self-image

Having a chronic illness/disability can often come with a lot of negative feelings which can make it difficult to make self-care a priority as we don't feel we deserve it or it's not a priority.

But it's important to try and challenge ourselves and review how we feel about ourselves and try and achieve inner peace and be happy with our inner selves as well as our external selves and be accepting of the things we cannot change and think of all the things we can do and celebrate those achievements which make up feel more positive about ourselves. It's important to celebrate those achievements, no matter how small they are because you you they are the big victories.

Reviewing how we view ourselves can help us to feel more happy with ourselves and our bodies/minds despite it's flaws. We also need to find ways to value ourselves instead of valuing the things we do.

3. Connecting with ourselves 

When we have a chronic illness/disability we become experts at looking after our physical bodies - attending appointments, taking our medication, doing our physio exercises etc. However, it can be harder to nurture our inner self. As mentioned before, this may be because we feel inadequate or have a poor self-image of ourselves or we may feel that we have little value or that you may never be "good enough". It may also be because we are so wrapped up in looking after our physical selves that looking after other aspects of our holistic self don't become a priority.

It can be good to take time-out to connect with ourselves and try not to feel guilty about this. If you're going through a rough patch, whether it be physically or emotionally it's important to recognise that, connect with ourselves and ask ourself what we need. This may be doing something like prioritising our diary, rescheduling to a later date non-urgent medical appointments, planning a free day/week off of nothing in your diary to rest and recharge and reconnect with ourselves.

To try and connect with yourself you need to try and not hide your feelings from yourself. Try and find way to take care of your mind like creating a positivity jar or journal/scrapbook, notice and name your feelings, accept thoughts and emotions, practice self-compassion and being kind to ourselves and enjoy activities that just involve yourself such as arts and crafts, meditation or mindfulness, yoga/pilates, doing a jigsaw puzzle or activity book like sticker-by-numbers, dot-to-dot or colouring books, or sitting in the garden or local park or green space. Here's a blog post I did yesterday on 30 Things to Put into a Self-Care Box and tomorrow I'm publishing 30 Self-Care Ideas.

4. Pacing, planning, prioritising and rest

Often, and I'm guilty of this, when we're having a good moment we often use that moment to get things done, but then we push ourselves too much until we're running on empty adrenaline leaving us feeling utterly crashed which can for some of us set us back hours, days or even weeks. And then we do the same and we get stuck in a 'boom and bust' cycle.

This cycle is both damaging to our physical, intellectual/cognitive, mental and emotional states. But, great news, this cycle can be avoided with the practise of self-care and pacing.
I did a whole blog post on Pacing, Activity Management and Rest which you might find helpful if you want to read more.

30 Self-Care Ideas for Self-Care Week 2019

1. Go for a walk
2. Spend time in nature like watching the bird in the garden
3. Have a pampering bath/shower
4. Give yourself a DIY facial
5. Have a digital detox
6. Practice mindfulness, meditation or prayer
7. Enjoy a quite cup of tea/coffee
8. Ask for help if needed
9. Eat healthily
10. Drink plenty of fluids
11. Give yourself permission to have a nap
12. Reassess your priorities
13. Let go of perfectionism
14. Put exercise/movement into your daily routine
15. Treat yourself to a massage or a manicure
16. Read a book or magazine
17. Do some colouring
18. Attend a social or worship group
19. Create an enforce boundaries
20. Go and see a film, either own your own or with a friend
21. Treat yourself to a drink from a café
22. Have a clear out of your wardrobe
23. Get into a good sleep hygiene routine
24. Give permission to treat yourself to something like a new handbag
25. Listen to some music, a podcast or audiobook
26. Go to a yoga class
27. Take up a new creative hobby
28. Keep a journal 
29. Know it's okay to cancel plans
30. Reflect on the day that just been

30 things to put into a self-care box - Self-Care Week 2019

Self-care boxes are a great tool to keep to hand for when we need moments or prompts to keep calm and look after yourself. Anyone can benefit from having a self-care box. From things that bring us comfort, bring up special memories or help ground up and calm our mind in a moment of crisis.

1. A mini comfort blanket
2. Headphones
3. Tangles or other fidgets
4. Aromatherapy oil or aromatherapy oil roller to put on pressure points or aromatherapy oil spray
5. A weighted lap blanket
6. Tea, hot chocolate or coffee sachets
7. Colouring book
8. Felt-tip pens or pencil crayons
9. Puzzle books, sticker-by-numbers or giant dot-to-dot books
10. List pad to write down coping skills as a visual reminder or to write a 'now and next plan'
11. An elastic band - this can help those who struggle with self-harm
12. Lip balm and/or hand cream
13. Fluffy socks
14. A packet of tissues
15. A list of numbers and people/organisations you can contact such as friends, local crisis team or organisation like the Samaritans, Mind or Papyrus UK
16. A 'Where's Wally' book
17. Special memories such as a card or letter or photographs
18. Mindfulness activities
19. A tea bag to smell and hold to help with grounding
20. Miniature puzzles like a miniature lego figure you can concentrate on and build
21. Kinetic or magic sand
22. A small soft toy
23. A notebook to write and draw how you are feeling
24. A favourite DVD or CD
25. Your iPod or MP3 player
26. Nail polish
27. A 'Calm Jar' or snow/glitter globe
28. Sensory tactile items like a spiky ball, play-doh, a koosh ball, squidgy mesh ball or glitter slime
29. A favourite book or comic
30. A favourite snack or hard boiled sweets or a lolly

A photo of some of the things in my self-care box

7 Areas of Self-Care - Self-Care Awareness Week 2019

Physical Self-Care

This involves looking after our bodies including health, nutrition, sleep, rest etc.

Some examples include:

• Going for a walk
• Having a bath/shower
• Getting enough sleep and resting during the day
• Eating a nutritionally balanced diets
• Drink plenty of fluids
• Take a rest or nap during the day

Emotional Self-Care

This involves emotional literacy, emotions, increasing empathy, managing stress and anxiety, developing compassion.

Some examples may include:

• Writing a gratitude journal or creating a gratitude jar
• Be more kind to yourself
• Do a stress management course
• Making time for reflection 
• Working on developing emotional literacy
• Being aware of ones own boundaries and saying 'no'

Intellectual Self-Care

This involves learning new things, thinking and creativity.

Some examples may include:

• Practising mindfulness
• Journalling
• Reading
• Learning a new skill
• Doing a digital detox
• Do a colouring or puzzle book

Social Self-Care

This involves having a supportive network of family, friends and others such as colleagues at work who you trust and can turn to when needed.
Having  a supportive and caring network of people around you helps build up a sense of belonging and connection.

Some examples include:

• Join a social group, such as a local craft group
• Asking for help when needed
• Meeting new people
• Spending time with others
• Speak with friends, either send them a text, call/video call them or even send them a letter
• Go out with people such as cinema or coffee dates

Environmental Self-Care

This involves being organised, having a clutter-free space to work at either for work or hobbies, a tidy room for rest and sleep, your home environment, a tidy care. Also minimising waste and monitoring home mine time we spend with technology.

Some examples could include:

• Having a declutter of your home or work environment
• Having a wardrobe clear out
• Recycling as much as possible
• Monitoring technology time
• Tidying up after yourself
• Maintaining and clean and safe living environment

A Quaker Meeting (my faith)

Spiritual Self-Care

This involves your beliefs and values that are important to you and that guide you in the way you live your life. This could include pursuing goals and practises that help you develop your spiritual awareness.

Some examples could include:

• Meditation or mindfulness
• Having a reflection journal
• Volunteering
• Spending time in nature
• Preyer, either alone or with another person
• Find a place of worship where you feel comfortable

Financial Self-Care

This involves being responsible over your finances such as daily living expenses, income, insurance, savings etc and having a good relationship with money.

Some examples could include:

• Knowing where your income in going in
• Knowing what and when your outgoings are due
• Paying bills on time
• Keeping insurances up-to-date
• Opening a savings account and saving money more wisely 
• Using an appt or finances book to get track of ingoing and out going expenses

What is Self-Care // Self-Care Week 2019

Self-care is looking after your mind and body to support your physical, social, emotional and intellectual wellbeing.

We could engage in self-care by eating healthily, exercise like going for a walk, attend an activity group, talk with a counsellor or take time out of the day of a spot of mindfulness.

The dictionary definition of self-care is:

Self-care is good for us as it empowers us to take control and look after ourselves and be more self-reliant and become resilient both interns of of physical health as well as our mental health. Self-care also helps catch problems early and prevents problems from getting worse. You don't need to be ill to engage in self-care, intact it's better to engage in self-care to prevent problems occurring int the first place, especially when it come to our mental health.

References:

• Mind
• Self-Care Forum