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 or Have a Disability // 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 // 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 photograph of one of my self-care boxes

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

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 my 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.

GUEST POST by Michelle on living with Trigminal Neuralgia - Pain Awareness Month 2019

It's Tuesday morning, about 11am. For the third time since 7am, the ache pulsing through the right-hand side of my face has turned into indescribable bolts of agony. Some describe it as electric shocks, but today it feels like someone has flipped an "on" switch, activating searing acid trying to destroy my face from the inside out. My teeth and gums are indistinguishable from my jaw and cheekbone. They're one amalgamated plate of pain. I sit on the floor and grip the hair on the other side of my face, incapable of doing anything except scrunching my eyes and whimpering "ow, ow, ow." One of my dogs tries to comfort me by licking the only exposed skin area he can find: that searing side of my face. It's my breaking point. I call my doctor's surgery to tell them I need an urgent telephone appointment. I'm giving in, relinquishing my quality of life to the side effects of the medication that will help.

To some extent, knowing what's happening to me helps. If you put your palm on your ear and splay your fingers out- pinky under the lip, middle finger towards the nose, thumb above the eyebrow-you've got a rough idea of the three nerve branches in your face. Each branch has a few coming off of it, but that three-pronged nerve is where the "trigeminal" in "Trigeminal Neuralgia" comes from. The "neuralgia" is nerve pain. Often, in TN, there's an impingement on that nerve. It can cause misfiring on one, two, or even all three branches. For those whose MRI shows a reason for their pain, a surgery the decompress the nerve puts you out of action for about two weeks, but in return they're likely to have years free of torturous pain. This is more common in TN type 1, which is usually flashes of pain. In type 2 typically has longer periods of pain, more of a "strong, consistently throbbing face ache." This usually doesn't have an obvious cause that can be surgically rectified. People can have both, and often distinguishing between them isn't quite straightforward.

TN used to be referred to as "the suicide disease" because of the intense pain. It is debilitating and exhausting. Those who have been through kidney stones and pregnancy as well as TN agree that TN is by far worse, and harder to treat. Before vaguely effectivetreatments existed, many resorted to suicide. When my flare ups were only occasional, I didn't understand. When I became paralysed by pain repeatedly in the day, I understood. Cold wind on my face was a trigger. So was eating on that side of my mouth, brushing my teeth, blowing my nose, and a plethora of other benign things.

But I'm lucky. My dentist recognised the symptoms and didn't recommend pulling any seemingly healthy teeth to try to resolve the issue. Many others have had multiple teeth removed. Nor have I had to argue with my GP about my symptoms being psychosomatic or a migraine. Neurology advised on medication to start prior to my referral. Others waited months for even this. I'm hoping that an obvious physical cause will be found so I can have a long-term intervention instead of dulled pain, nausea, and thrice daily naps courtesy of my current medication.

Pacing, Activity Management and Rest

What is Pacing?

Pacing can be used by anyone living with a chronic illness/disability.

Pacing is helping you to keep a healthy balance between activity and rest by spacing out activities during the day. It enables us to take better control of our health and stay with our body's limits, even when we are unwell, and become experts in managing our health and life better and prevent exacerbating symptoms, or even causing a crash or relapse.

Though learning how to pace ourselves in can bring improvements in the way we feel and whilst it does take a lot of patience and self-control to learn how to do it in time most people are able to do more.

Learning how to pace ourselves allows us to gain a better awareness of our own limitations which allows us to better manage our energy levels and maximise what we are able to to on a daily basis.

It does take a bit of practise and work (and I'm still learning and improving myself) but once you've mastered it it will significantly help you manage your health.

The Traffic Light System

Traffic light 'to do' list from
© Stickman Communications

With he traffic light system it gives you a visual way of balancing activities to help you maintain your energy levels. and plan your day (for planning see below).

Green are easy tasks/activities
Orange are okay tasks/activities
Red are challenging tasks/activities

So with the traffic light system if you were to do a red task on your 'to do' you know to follow it by a green task or a period of rest so as to avoid overdoing yourself and making your symptoms worse allowing you carry on throughout day.

What is so good about the traffic light system is that you can adjust it for how you are feeling that day. So on a good day making a telephone call may be a green task, but one another day where you're running low of energy or you're feeling anxious making a telephone call may be an orange task.

What you label as red, orange and green is individual to you. 

Alternatively you could label green could also be labelled as rest, orange for low energy activities and red for high energy activities.

On bad days is is best to do more green and orange activities and if possible avoid red activities.

(Pacing Sticky Notes from © Stickman Communications) 

20:10

20:10 is another easy way to get a balance of activity and rest in your day. It basically entails 20 minutes of activities followed by 10 minutes of rest. On a bad day you could swap this around and do 20 minutes of rest and 10 minutes of activity or whatever is manageable for you. 

What is 'Activity'?

An activity is anything that uses up our energy, it may be physical, cognitive or emotional energy; basically nothing that is not complete rest. This could be anything from baking a cake, laying down listening to an audiobook and even getting upset or being in pain.

Using a balanced and steady approach towards activities prevents the tendency to overdo things which leads to an inevitable crash, relapse or exacerbation in symptoms.

Planning

Planning your day out is also a really important so you can spread out and use your energy wisely. You can use analogies such as 'Spoon Theory' to help you plan out your day and where to spend your energy of 'spoons'.

When planning what actives that you will do that day think it's important to categorise activities such as: physical, cognitive, high energy and low energy. This is where the traffic light system can be useful.

On bad days you should aim to do more green and orange activities.

I find using my pacing whiteboard and post-in notes really helpful to plan my day out, and if I do find myself running out of energy I can always rearrange the magnets to something that will be more manageable for the rest of the day. It's also a great visual tool, especially to colour coding (and I couldn't resist buying coloured whiteboard pens too!).

My whiteboard plan for the day using the Traffic Light system

Set yourself some reasonable and manageable goals for the day, like getting dressed, washing your face and spending some time out in the garden. Whatever is manageable for you to do on that given day. 

Remember, it's okay to have bad days and it's okay to do little on those bad days.

Find your baseline and stick to it, if 15 minutes of studying is manageable then just study for 15 minutes then take a break. Look after yourself as a car can't drive without fuel. Don't push yourself beyond your threshold, especially to please others, prioritise your limits, yourself and your health. And if that means cancelling plans then that's okay. 

(Pacing Fridge Magnet Set from © Stickman Communications)

Activity Management

This is slightly different to pacing but the idea behind it is very similar.

"Activity Management is an approach that combines pacing (which is to stabilise your ability level and grading (which is used to build up your ability level). - Severe ME/CFS: A Guide To Living by Emily Collingridge

To manage activities effectivity you need to listen to your body and work out how long you are able to do an activity for - this is your baseline. Your baseline is the amount of one activity you can do consistently without your health worsening. When you know your baseline you can know better your limits for good and bad days.

Everyone's baseline is different and how long one person can do a particular activity for differs for someone else.

When working out your baseline it's important not to make your symptoms worse. It may be help to keep a diary of your activities each day and note how long you was able to do that activity for to help you work out what your average baseline is. When taking your notes also make a note of your emotions as that can affect or energy levels as well as other notes such as your level of pain that day and breaking activities down with periods of rest. Slowly you will grade yourself up to increase the time you spend on an activity. When you listen to your body and let it guide you as to what activities you are able to do when; when you feel able to do something or not do something

And remember, it's okay to ask for help.

Switching

Switching is an important aspect of activity management. Often when you have a chronic illness/disability focussing on the same activity repeatedly during the day can exacerbate and make symptoms worse.

By doing different activities during the day can mean you are able to do more.

So switching could involve watching TV followed by making and eating lunch followed by doing your physiotherapy exercise followed by sitting in the garden with a hot drink. Doing this means you are doing a variety of different types of activity - cognitive, physical, high and low energy. Also, don't forget to plan in rest periods too.

Prioritising 

Try to prioritise the most important tasks and remember that there is always tomorrow. I find writing colour coded lists helps or using my reminders app which sync across my mobile, laptop and iPad helpful. You could carry a little list book or diary around with you or get a pack of differently coloured post-it notes.

When writing your 'to do' list or plan for the day make not of what actions have the most urgency, such as ordering medication you're running out of. It might help to number your list from 1 being to most important so you know that action needs to upmost attention so you can get them done first before your batteries start to run low.

If you're going through a rough time with your health and you have a lot of appointments it might also help to prioritise your appointments (this is something I've been doing lately). Look at what appointments you have, what appoints are important or can't be changed and what appoints can be postponed to a later date  so as to give you more time to rest and recuperate.

What exactly is rest?

Often we think that resting is laid watching TV or listening to music, and even though we are physically resting we are still actually stimulating our minds by using up cognitive energy - such as having to concentrate on the story line and listen to what is being said.

Complete rest means having no stimulus around us ignorer for our brains to rest. No sound, light, smells etc. To help you have complete rest you can put on an eye mask and use ear plugs or noise cancelling headphones/ear defenders. Whist resting you may try out breathing exercises, meditation or other things like visualisation. This type of 'neurological rest' allows or bodies and minds to recharge better.

When you have a chronic illness/disability, especially if you struggle with chronic fatigue having regular periods of rest or relaxation during the day is important when it comes to pacing.

Remember: never feel guilty for resting.

To sleep or not to sleep?

Some healthcare professionals say the having a sleep during the day can help to get better sleep as bedtime as this prevents getting over tired at bedtime resulting in difficulties getting off to sleep.

Some experts say they you should not sleep after 3pm.

Other professionals contridict this and say it is not necessary to sleep during the day and daytime sleeping can affect sleep quality at night.

I think its about really listening to your body. If it get to after lunch and your body just can't function without a nap then have a nap and then you can gradually build yourself up from sleeping during the day to just having a period of complete rest.

(Since reading about this doing this post I've been having a rest/nap in the afternoon and I have found benefit from this.)

Links and References

• 'Severe ME/CFS: A Guide To Living' by Emily Collingridge
• 'Pacing for People with M.E.' by Action for M.E.
• Pacing: The Chronically Ill Person’s Best Friend
• The power of pacing: Managing energy with a rare disease or chronic illness
• Activity Management: St. Helier & Sutton CFS Service
• Pain Toolkit