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

Self-Care Week 2019

This week marks Self-Care Week 2019. Self-care is a vital tool look look after not just jour emotional wellbeing but your physical, social wellbeing too. 

This week I'm going to post some self-care info to help you look after yourself.

I will be posting about self-care boxes, mindfulness activities, yoga and other ideas for looking after yourself to get you going on your journey to self-care.

100 Best hashtags for Social Media for Chronic Illness Bloggers

1. #blogpost
2. #chronicillness
3. #chronicinsta
4. #invisibledisability
5. #invisibleillness
6. #invisibledisabilitylookslike
7. #sickbutinvisble
8. #chronicpain
9. #chronicfatigue
10. #illness
11. #disability
12. #disabled
13. #morethanadiagnosis
14. #healthblogger
15. #chronicillnessblogger
16. #disabilityblogger
17. #chronicillnesswarrior
18. #mentalhealthblogger
19. #spooniebloogger
20. #selfcare
21. #mentalhealth
22. #zebrastrong
23. #spoonie
24. #spoonieproblems
25. #chronicillnessproblems
26. #emotionalwellbeing
27. #chronicillnessblog
28. #theworldseesnormal
29. #awareness
30. #disabilityawareness
31. #invisibleillnessawareness
32. #chronicillnessawareness
33. #mentalhealthawareness
34. #spoonielife
35. #chroniclife
36. #chronicsick
37. #sicklife
38. #mentalhealthmatters
39. #emotionalhealth
40. #emotionalwellbeing
41. #itsokaynottobeokay
42. #endthestigma
43. #beingincurable
44. #careaboutrare
45. #raredisease
46. #rarediseaseawareness
47. #accessibility
48. #mobility
49. #mobilityaids
50. #babewithamobilityaid
51. #caregivers
52. #holistichealth
53. #chronicillnesswarrior
54. #[insert illness]warrior e.g #MEwarrior
55. #chronicillnesslife
56. #painsomnia
57. #fightingformyhealth
58. #tubefed
59. #spooniesupport
60. #spoonielife
61. #butyoudontlooksick
62. #health
63. #fighter
64. #chronicdisease
65. #awareness
66. #hope
67. #healing
68. #chronicillnessfighter
69. #chronicillnesssucks
70. #pain
71. #thebarriersweface
72. #makeourinvisiblevisible
73. #inVISIBLYdisABLED
74. #brokenbutbeautiful
75. #disabodypositive
76. #bodypositive
77. #spooniecommunity
78. #disabledcommunity
79. #disabledtogether
80. #wheelchairlife
81. #wheelchair
82. #assistancedog
83. #chronicallyfabulous 
84. #hospitalglam
85. #disabledandbeautiful
86. #painwarrior
87. #iamapainwarrior
88. #painwarriorstrong
89. #disabiledwarrior
90. #keepfighting
91. #myscarstellastory
92. #spooniestrong
93. #disabledandbeautiful
94. #brainfog
95. #appointment
96. #drsappointment
97. #hospital
98. #hospitallife
99. #wellness
100. #millionsmissing
101. #disabilityadvoocate

PoTS Awareness Day - Dysautonomia Awareness Month 2019

Today is the first PoTS Awareness Day. 

"Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. Simply standing can be a challenge for people affected by the condition as their body is unable to adjust to gravity. PoTS is due to an abnormal response by the autonomic (automatic) nervous system ad is characterised by orthostatic intolerance (the development of symptoms when upright that are most relieved by lying down). Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headache, ad are associated with a persistent increase in heart rate from the lying to up right position." - PoTS UK

I got a diagnosis of PoTS this year. I struggle to stand for even short periods of times so I often need a wheelchair to help me manage my symptoms (alongside my other illnesses). When I stand my blood pressure drops and my heart rate increases to try and compensate. For me my PoTS goes alongside having M.E. and my hypermobility disorder which is very common.

The PoTS UK website has really helped me to understand the condition as well as helping me find ways of managing the condition.

Though there is no cure for PoTS it can be managed by lifestyle changes and for some people alongside this medication.

For anyone interested in wanting to know more about PoTS or has the condition themselves or if you are affected by the condition such being a carer for someone wit the condition or you are a care professional I'd defiantly recommend checking out the PoTS UK website. 

Having an Invisible Disability

My health problems are real, even though other people can't see it and what others do see, like my wheelchair or crutches or orthotics is on a tiny fraction of what I'm dealing with. Things like pain and fatigue and all my other symptoms, like a dislocated joint (unless I'm waving around a x-ray), migraines, hypersensitivity, depression/anxiety and autistic traits can't be seen, only invisibly felt or experienced.

"You don't look sick" I've lost count how many times I've heard that over the years. It's not a compliment when someones says those words to you. Those words I find so funstrating to hear as I wish I could hand over a box of all my invisible suffering and it makes it hard for your suffering and trying to have your ill health taken seriously.

"Looking well" takes a heck of a lot of effort and it can be a burden to seem "okay" to the outside well and it's almost something you have to do because you have to live out your life through your suffering. If you spent your days acting out your internal sickness you would never get anywhere.

Often care professionals don't take your symptoms, like pain, seriously because you've become so accustomed to masking and living with them. Even when I've been rushed into A&E with something like a badly dislocated hip internally I'm shouting/screaming/crying, but I've learnt that that get's me nowhere, so I quietly and subtly deal with the pain and she I'm asked how I'd score my pain I'm not believed because I'm not shouting or screaming or crying.

People around you question you, why are you not "trying hard enough" or "pushing yourself" to get a job (or some other part of adulating) because you "look" capable of working. When in fact they only see me, which is briefly, is when I'm having a "well" moment because I've rested and recharged and tried my hared to summon my "functioning human" mode to meet that person. And then when they leave I can go back to my usual position of being curled up in a ball on the sofa too tied to lift my head ill mode externalising what my body s screaming about internally.

And even though I'm a pacifist when people tell me "you don't look sick" or "you need to try harder" what you really what to do is punch them.

It's okay to not feel okay. And if you want to get upset or angry then go for it!

There is no stereotypically "ill person" - 19% so almost 1 on 5 working aged people in the UK are disabled (Scope) and the vast majority of those people's disability will be largely invisible. Each person's disability is unique to them; even two people with the same illness will not have the same difficulties as one another.

Links and References

• Scope - Disability Facts and Figures
• Invisible Disabilities Association

Guest post by Mark on disability & searching for his faith

I had a stroke in my mother's womb and as a result I was born with paralysis down the right-hand side of my body. No operation could 'fix' me and only intensive physiotherapy in childhood could help improve the functionality of those muscles that had been weakened by the stroke.

I 'coped' reletivly well into adulthood. I went to University and had a career working as an IT as well as being a qualify lecturer working in Further Education teaching adults with dyslexia.

However, eight years ago, aged 35, I suffered what I can only described as a 'second stroke' that caused immense pain in my muscles and severely affected my mental state. I've read that people born with disabilities have difficulty coping as adults when their condition worsens. This was defiantly true in my case. I had to stop working and concentrate on recovery. However, I entered into a black hole of depression and as a consequence made some very poor life choices.

By the time I turned 40, I was coping a lot better physically but mentally my mind still felt shattered. It was at this point that I decided the best way forward was to find faith in something I could believe in. I'd previously experimented with Buddhism and Christianity but never really felt  'connected' to either.

From a local library, I read about 30 faith-based books before I came across Quaker Faith & Practice. When I read the introduction and the first chapter, Advice & Queries, a tingle of excitement ran down my spine. I carried on reading and when I got to the page 'Ways of Seeking' I decided there and then I was going to be a Quaker.

What appealed to me the most is that the Quakers have no creed. There is nothing to say a Quaker must believe this or that. If you believe in God or not, it's your choice. Every Quaker must speak for themselves and seek their own spiritual path.

What binds Quakers together are the testimonies. These are most commonly referred to as SPICES:

• Simplicity

• Peace

• Integretity

• Community

• Equality

• Stewardship / Sustainability

Quakers live their everyday lives through these testimonies, interpreting them as they best see fit.

For me, it is the Equality testimony that I find most powerful. When the Quakers began in mid 17^th century England, it was the Church that decided who should and shouldn't receive God's love. The Quakers rejected this and adopted the belief in Universal Love.
It may seem strange to think in this day and age, but at the time Universal Love was a highly controversial belief. This was because it took power away from the Church of England who claimed to have the authority, on behalf of God, to say who was and wasn’t worthy.
In essence, Universal Love means equality. You have an equal right to love and be loved in return no matter who you are. For me, I find an acceptance within the Quaker community that I've yet to experience elsewhere.

I'm now 43 and have been a Quaker for almost four years. My mental health has improved and I'm probably happier in my own skin than I have ever been. 

World Gratitude Day

Today is World Gratitude Day.

Gratitude is something that has grown more within me since becoming ill. The small things have become the big things. A cup of coffee, a shower, sitting outside in the sunshine or a visit/message or letter from a friend. These things matter more to me now and I am more thankful for and actually often enjoy more than the big things at times.

I think we need more gratitude in our lives and to take a step back and evaluate our lives and what we feel gratitude for and what matters the most to us and makes us the happiest and to help out other people and share kindness and happiness.