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Image of a white male plasitic model anatomical torso in a window. Text over: Diagnosis Denial for Experts- Shame, Blame & Adulting Part 1

When I was finally diagnosed with my first autoimmune diagnosis, I was relieved – relieved to actually have a diagnosis. For somebody to put a name and a label on everything I was going through.

(And finally, after all the years, they did believe me.)

It was really happening, I hadn’t ‘gone crazy’ or just become really, really unfit, or whatever other fears my mind could throw up.

If it had a name, that was something to hold onto.

If it had a name, I could find out about it, and I could look for a cure and make it all go away, and get my life back.

At the same time as this, I was desperately embarrassed, really so ashamed, I felt like it was my fault, and that I was weak or had failed in some way. That I had done something wrong somehow, by getting ill. And that people would be angry at me for it. Or too worried and try and take more of my life away. The shame/blame game played out strongly and at the time I didn’t have the tools to handle or escape it.

I couldn’t believe this was happening to me. I was the one who was so strong, who always coped, who had so much energy, who worked so hard.

I really really wanted the illness not to be true. I really, really wanted to just ignore it. Denial deepened.

I wanted not look at the diagnosis, the reality, the pain. I wanted to pull my life around and try and make it less of a factor. Never mention it. Change my hobbies and pretend it was from choice, and never ever say, not even whisper, that I was now far, far too sick to do the things I so desperately loved. Oh, adulting challenges.

You may have wanted this too, or you may have had one of a thousand other different reactions and that is ok.

We feel that something horrible has come into our lives, and we can’t instantly change it.

But we want so, so hard for this not to be happening to us.

Desperate with toe curling, tear streaming, muscles clenched, shouting, impotent fury and pleading for this not to be real and not to be happening to me, because I’m a good person, and I’ve got a life to lead and I don’t know how to handle this and I need to be okay.

The thing is, ignoring it doesn’t work… I was building my life around a pretence, I was not taking care of myself because I was too busy trying to pretend that I wasn’t sick and I got ever, ever so much sicker. Dangerously so.

But I found my way, and that’s what Trailblazing Wellness is about, it’s not to tell you my way – it’s to give you options and to help you find yours.

To get started, download my free guide on Turning Trailblazer below…

6 Things to Do Today to Rock Your Summer, white text over a purple rectangle over a photograph of a white dish of raspberries and blueberries on a table, out of focus green background

“Another wasted Sunday… Realise, as the long hot days freakishly repeat themselves, one after the other, that whatever I am doing I really think I ought to be doing something else…

The more the sun shines the more obvious it seems that others are making fuller, better use of it elsewhere: possibly at some giant softball game to which everyone is invited except me; possibly alone with their lover in a rustic glade by waterfalls where Bambis graze, or at some large public celebratory event, probably including the Queen Mother and one or more of the football tenors, to mark the exquisite summer which I am failing to get the best out of.”

– Bridget Jones Diary

The summertime is often portrayed as the best time of year, the time to which everyone looks forward.

But what if you don’t fit into that category, for whatever reason?

It may be that you just prefer the winter months, or it may be that certain difficulties come with the intensity of summer.

Perhaps it’s frustrating seeing how bright and warm it is if you’re not able to go outside as often as you’d like, or at all, especially if you are living with chronic illness, caring responsibilities or mental health challenges.

It can sometimes feel like there’s a pressure to be outside and to enjoy the weather (how many times have you heard the phrase “enjoy it while it’s here”?).

But there are a few things you can do that might make those difficulties a little easier. Planning for summer now can make all the difference later.

1. What’s YOUR reality?

Firstly, acknowledging that you find aspects of summer hard might help. It won’t necessarily make you enjoy the time more, but it can at least take some of the pressure off, knowing that you don’t HAVE to enjoy it. It’s easy to fall into thinking that we shouldn’t feel like this, but we’ve had some words to say about ‘should’s before.

2. Prepare for Clear Skies

You know the heat makes things harder, so plan ahead and prepare to make things easier when the temperatures soar. Think about the tasks you need to do every day and how heat makes them harder. Setting up options in advance is doing your future self a favour. Can you freeze meals in advance? Get a chillow or fan ready? Discuss a flexible work schedule with your colleagues? Get organised get your cool ducks in a row.

Read the full post at Yumbles where I am a featured wellness blogger.

how to party with pain: a guide to celebrating with challenges gracequantock.com black text over imsage of pitchers of red cocktails on a table, white wall behind

I was seventeen when I was first invited to a dinner party. My first, real, grown-up party! I got all dressed up. Hair. Make-up. The excitement was palpable. Good friends, food and fun times – this was living!

I made it to the soiree, elated and expectant…but fell asleep at table. Weakened by just getting to the party, once I actually arrived, I simply collapsed and passed out with exhaustion.

It was the first of many disheartening occasions where my chronic illness dampened the festivities.

I love birthdays, milestones and celebrations. Parties are amazing opportunities to bask in joy and happiness – but they frequently bring up huge challenges, especially for those in pain or with illness. Travel. Unsuitable food. Emotional or physical overwhelm. Over-stimulation. Navigating expectations. Awkward questions. And, for those of us with mobility aids, new or inaccessible environments. With pain or without, parties present unique issues. But with forethought and savvy planning, they can still be managed and – even more importantly – enjoyed.

Planning may seem to undermine the fun and spontaneity inherent in happy occasions. It may even seem boring and unfair when it appears not everyone must go to the same lengths to achieve the same outcome. But in truth, everyone plans how they’ll navigate a party in some way, shape or form: people work out what to wear, what gift to buy, what food to bring, how to avoid traffic (and that obnoxious aunt or ex!)

The difference?

Most people don’t consciously acknowledge that it’s actually “planning.” When planning how to manage a party so we can enjoy it with illness, pain or grief, we’re prepping just as everyone does, just more deliberately.

Some of the best ways to release the pressure and cope, energetically and emotionally, are some of the simplest:

Read the full article on Positively Positive here.

Image of a white and black cat lying on a white background. Text on top: Sleeping Struggles? 10 Easy and Effective Tips to Try
Do you ever find that sleep eludes you?

For something so vital, so many of us do not get nearly enough. 

So often sleep can seem like time wasted, when the to-do list is growing and the world is moving onwards, who has time for snoozing in bed? 

Have you ever stayed up an hour later – just to get that task finished off?

Did you know that when you loose an hour of sleep, you don’t gain an hour of productive time? Not at all, in fact, you reduce your productivity greatly with each hour you give up. 

I learned this doing the research for my Successful Sleeping Workshop. It shocked me, and it made me go to bed earlier!

(We teach what we need to learn).

The problem is when we are in bed, how can we actually get to sleep? With whirring minds and spinning thoughts, how on earth does sleep come?

Well, I have some suggestions…

  1. Mindful Moments

Does your mind spiral and run riot when you lie down to sleep? If so, Mindful Moments may help. If we do this, if we syphon off some of the roaring thoughts that live in all of our monkey minds, then they won’t ambush us the moment our head hits the pillow. 

If we do this, if we syphon off some of the roaring thoughts that live in all of our monkey minds, then they won’t ambush us the moment our head hits the pillow. 

If you have worries waking you up at 3 am, maybe they need somewhere to be released in the day. Mindful Moments give you that.

We can stop and take the time to appreciate our surroundings and be here now. The sound which could be irritating can become an exercise in letting go or can become a sound-scape: a landscape of sound. Do the sounds, smells, textures or sights around you bring up any images or feelings for you? We are just expanding our awareness, not cataloguing or engaging just bringing closer awareness to this moment.

The sound which could be irritating can become an exercise in letting go or can become a sound-scape: a landscape of sound.

Do the sounds, smells, textures or sights around you bring up any images or feelings for you?

We are just expanding our awareness, not cataloguing or engaging just bringing closer awareness to this moment.

Do the sounds, smells, textures or sights around you bring up any images or feelings for you? We are just expanding our awareness, not cataloguing or engaging just bringing closer awareness to this moment.

Many people say they do not have time for meditation or mindfulness practice, but it is not something that has to take hours.

Several of my teachers recommend a “3-minute” breathing space, and Sue Weston, my Tai Chi Qui Gong teacher actually talks about a “3-second” exercise.

As she says, no-one is too busy for 3 seconds! Whatever you do, just do it, stop, breathe, be.

An exercise for 3 seconds is still powerful, no-one is saying it will solve everything and you may still be agitated but it is a practice, your body practices stopping and resting, the more you get into it the body remembers and the practice deepens.

If it takes the edge off your tension the tiniest bit it is still worth it.

No magic pill but practice, experience and kindness of living in our bodies and hearts.

2. Create a Self-Care Kit

Let’s get to work with our treasure chests: create a treasure chest of joys, of happy activities, pleasant memories, blessings, gratitudes, favourite things. Put it together and use it when you can’t sleep.

Put in things to help you cope; a relaxation c.d, a journal, whatever is right for you.

Check out my guide to making your own Self-Care kit here. 

Or let me design a bespoke care kit for your needs, through my award-winning non-profit, Healing Boxes

Once you have your Self-Care Kit, then you can create a Strong-Box, this can be a box or chest that you keep somewhere, either physically or mentally, you put all your problems, sorrows and worries into it.

You can do it before you enter your home in a chest by the door or before you sleep or sit down to a meal with your family.

A chest is safe, it is designed to hold things.

If you really need to you can put your worries there for a while, take a break and if you need to you can pick them back up afterwards. This is somewhere that can store all your “baggage and burdens” until you can handle them alone or with a therapist, coach or trusted friend. 

3. Restful Environments

I’ve had a lot of success with sleep care. It is very simple but remarkably powerful.

Basically, you make sure the room/area where you sleep is conducive to rest and reserve it for rest only.

Aim for calming decorations, I’m not suggesting redecoration but there are easy things to do. If the walls are not a restful colour, (and it doesn’t matter which colour, as long as you consider it restful), then you can cover them with pictures or wall hangings.

Create your own home “Bedscape“.

You can put covers or sheets over any open bookcases or shelving units so that you are not looking at stimulating or work related things at night. If you can’t devote a room entirely to sleeping, (and many of us can’t), then try and have the desk or television facing away from the bed.

Try to make sure you only sleep in bed. You don’t eat in bed, or watch television or read, you just sleep there. This means that you begin to associate your bed and the room with sleep and rest and so sleep and rest come more easily to you there.

Another important part of sleep is the routine. Try a regular bedtime and rising time and a bedtime routine. You turn getting into night clothes, brushing teeth, bedtime prayers, whatever you do in the evening into a calming, relaxing routine.

Make sure your room is dark, if you need to, put up blackout curtains.

When I first did this I couldn’t prioritise blackout curtains in our budget, so I bought blackout material and tacked it to the inside of our normal curtains and it worked wonderfully.

Put opaque tape over any glowing lights from c.d players or digital clocks, if you can manage without them at night.

If you may need the clock then try and put something in front of it that you can move if you need to see the time. It can be useful to try and make sure that all electronic devices (especially mobile phones) are at least an

It can be useful to try and make sure that all electronic devices (especially mobile phones) are at least an arm’s length away from the bed as we don’t want to sleep bathed in EMFs (electro-magnetic frequencies).

4. Dietary Detecting 

It seems obvious, but needs mentioning, especially as one friend was struggling with insomnia and it turned out she was having so much coffee daily that she was struggling with the caffeine and that was why she couldn’t sleep until three am every night!

Cut out or at least cut down the coffee. Try alternatives to coffee after midday. Try to do something other than television or using devices for at least an hour before bed and try to eat before seven pm.

What would it feel like to wind down with a calming herbal tea or whatever is suitable for you? Try it and see…

5. Best Bed Investigations

Is your bed comfortable? Let’s make it so! If your back hurts every morning then your mattress could be too old, and it could be time to get a new one.

If you don’t have the money right now then perhaps you could get a mattress topper for now and then save up.

Disclaimer: If your back hurts every morning you also need to get your doctor to check that out.

Most pillows need changing every three months because they lose their support and because of dust mites.

Go for dust mite free bedding if you can and use as many pillows as you need.

I used to have so many pillows for all my aches and pains and to go under my legs at night, but now I’ve found something that works brilliantly: the N:rem Sleep System.

Everybody experiences pain differently.

We know that it moves and affects different parts of the body at different times.

That’s why a basic mattress doesn’t offer a comfortable solution to a good night’s sleep.

N:Rem bed offerimage of caucasian woman on a bed

I’ve been trialling the N:Rem mattress for over a month and I’ve been astonished at how much difference it’s made to my pain.

The N:rem Sleep System is a completely customisable mattress that’s been designed especially for chronic pain sufferers who struggle to get comfortable at night.

The interchangeable foam tablets in soft, medium and firm allow you to tailor your own comfort and support to get the right set-up that’s unique to you – and you can swap them around whenever your pain moves.

N:Rem have extended an exclusive discount when you buy an N:rem mattress using this unique voucher code: TRAILBLAZER

Remember the unique voucher code: TRAILBLAZER at https://www.nremsleepsystem.com/

6. Building a Back-Up Plan

Worrying about sleep doesn’t help us sleep. I know it is almost impossible not to worry but meditation, audio books, relaxation exercises and so forth can all be used to help you rest in bed if you cannot sleep.

Let’s make a back-up plan. If you can’t sleep, what will be your sanctuary? Imagine and inner safe place where you can go and feel calm, can you go there now?

What is relaxation to you?

What invokes relaxation and the sensation of ease?

It could be a massage, the knowledge of nothing to do, a hug, a warm bath, the smell of clean linen, candlelight, the sea and the beach…whatever it is for you, create or invoke it to relax today.

Use smell, taste, colour and imagery.

Is there something that you like to look at that makes you feel relaxed? A place, or view, or a picture or object. Gather these and use them.

7. Planner Priorities 

Give yourself some space.

Plan some space into the day and then in it ask yourself what you want to do?

Rather than thinking “I need to rest, I will plan a restful activity and Get It Done.”

Just plan some space, plan it into your schedule like an appointment, it is an important appointment with You.

This appointment is you, it’s your life.

Then when you get to it ask yourself what you feel like doing?

Give yourself time to answer and listen to the little voice.

Don’t dismiss it if you think it is a strange idea or not what you imagined as ‘rest’. If you have not listened to yourself for a while it might be a very little voice, a fleeting thought or sensation but the more you listen the stronger it will get, the more in touch you will be with your intuition, yourself, inimitably You.

Listen, you may want to walk down the road, eat some cherries, read a childhood book, go to bed for 20 minutes, rub your feet, pick something off this list.

Do it and release the guilt and enjoy. This is important.

We all desire happiness and joy, so have some now.

You can’t help others without taking care of you so we can release that worry and expand into our present space.

This will lead to better sleep when you hit the pillow at the day’s end. 

8. Add Adventure

Try getting outside, and get some fresh air, and hopefully some sunlight, for a break that will be a body (and later a sleep) booster.

You could take your tea, or meditation practice out there too. Enjoy the air.

Often we spend too much time in air conditioned or closed window places and this can make us sleepy and grumpy.

Inside, open some windows if that is possible and include some nice air cleaning plants – I choose round leafed ones as much as possible as we have found that spiky-leafed plants can make a spiky atmosphere.

I like rubber plants, spider plants, Boston ferns, ivy, aloe vera, orchids and lovely peace lilies. Go outside and breathe deeply. Pull up your sleeves and enjoy some vitamin D – for 15 minutes if you can on as much skin as possible bearing in mind sun safety. Even on a grey day things are often nicer outside than you think, wrap up and enjoy the – we are going to call it fresh and bracing rather than cold – weather!

Go outside and breathe deeply. Pull up your sleeves and enjoy some vitamin D – for 15 minutes if you can on as much skin as possible bearing in mind sun safety. Even on a grey day things are often nicer outside than you think, wrap up and enjoy the – we are going to call it fresh and bracing rather than cold – weather!

Even on a grey day things are often nicer outside than you think, wrap up and enjoy the – we are going to call it fresh and bracing rather than cold – weather!

9. Breathing Blessings

There are so many variations on this and it is worth exploring and finding ones you resonate with and new ones to try to keep your practice fresh.

You can look into mindfulness, pranayama, different forms of meditation, biofeedback, visualisation, guided meditation, Buddhist meditation and many others.

For now try breathing in a light the colour of your choice, whatever you need right now will come to you (but gold is always a good general life force/ healing/ love/ God light colour) and see yourself breathing out negativity – smoke, dark colours, pain etc. See the gold fill you up and the darkness become less and less and feel this is so.

See the gold fill you up, the darkness become less and less and feel this is so.

10. Make a Hammock Mindset

If you do not have a hammock to enjoy then you can create one. Hammocks are places just for relaxation, they are not for anything else.

We can create a space which is just for relaxation, which is what hammocks are and why they are relaxing. L

ie outside on a blanket or inside have a special blanket to lie on or under that is just for your relaxation periods.

Gradually you will associate the blanket or space with relaxation and it will be relaxing just to be near it.

What are your favourite tips to sleep well? Share in the comments.

Full Disclosure: I am an affiliate for N:Rem mattresses because I have found their mattress so helpful. N:Rem provided me with a sample mattess foam pads to trial, but all views are my own.

Photo of coastline, text: Trailblazer Interview- Tiffany Kairos on Epilepsy Mindfulness, Compassion & Action

Today we are hearing from Tiffany Kairos Care-Rose,  the founder of The Epilepsy Network (TEN).

TEN’s mission is to educate, advocate and provide hope to all who have been affected by epilepsy. Tiffany has lived with epilepsy for eight years to date.

In this Trailblazer Interview we talk about: 

– How to move forward and build a life with a condition that can make the future unpredictable.

– How to keep positive after seizures happen (or any other unexpected health flare or challenge that might affect someone) and how you’ve managed to make peace with a repetitive condition.

– How Tiffany used her challenge to blaze her trail and make the path easier for others

– The one thing people can do today to reclaim their life when they live with a similar condition.

N.B: For accessibility purposes, this interview is offered as a video, a podcast (audio) and a transcript. It’s all the same content.

If you’d like to support increasing these interviews accessibility by being offered in languages other than English, please feel free to donate below. Thank you.


 

Watch the interview:

Podcast:

Download and read the transcript:

Trailblazer Interview- Tiffany Kairos on Epilepsy Mindfulness, Compassion and Action Transcript

How do you handle unpredictable life experiences? Let me know in the comments!

P.S You may also like Trailblazer Interviews: Accessible Yoga for All to check out more Trailblazer Interviews here.

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