Dear Newly Diagnosed…

You obviously feel in need of support.
I do remember that feeling – that you are really struggling with the whole idea of having RA – of becoming chronically ill.

So you’ve joined a support group, seen a few posts about surgeries and disability and people trying their third biologic, now you’ve gone from slightly concerned to terrified!

It’s important I think that newbies to #chroniclife are made aware that it tends to be those with more severe symptoms who gravitate towards support groups or twitter, and stick around. It’s important we acknowledge that around 40-60% of those diagnosed with RA and treated early will likely achieve controlled remission with medication. That’s actually pretty good odds. And those people often never feel the need to look for support groups online or to stay around if they do.

So our tribe tends to be those who’ve been a bit battered, often suffering with mental as well as physical issues that ergo cause emotional as well as physical pain. It means sometimes posts and tweets can seem dark or bleak, but it also means we have a fabulous empathy with each other and are able to give outpourings of love and support and prayers whenever they are needed – we’ve been there, and many of us have come out stronger for it.

And that’s a really important thing to know – we do come out the other side. My first year with RA was dreadful, I lost my job, I was made homeless. My depression spiralled. It was a dark time, perhaps not dissimilar to where you may find yourself now, and without my online tribe (not forgetting my wonderful IRL family & friends!) I’d have collapsed. These fabulous, generous strangers kept me putting one foot in front of the other when I couldn’t see the way forward. They held up a light.

It was hard and it was sad and it was painful, I won’t pretend otherwise. Antidepressants helped, my GP helped, psychotherapy helped, group therapy helped, and very gradually my feet found new, firmer ground. On balance now I can honestly say chronic illness has brought more good into my life than bad.

The worst happened and the sun still rose and set. That’s life changing right there. Survival. Some great therapy led me to mindfulness which lead me to meditation and gratitude. Despite being ridiculously ill and in constant pain I am genuinely happier with myself than I’ve ever been in my life.

RA was the brute force needed to make me stop & smell the coffee. I know it touched me for a reason. I live more spiritually and much more slowly, I treasure my friendships, I’m more sympathetic, more patient & more kind. I’m grateful for the smallest things, a warm bed, hot coffee, a good book. I’m no longer impressed by the material, but hearing a bird sing or watching the clouds move can and frequently does fill me with with joy. My path has been irreconcilably altered by RA and I’m the better for it.

Yes I still have dark days. I’m very ill, with RA, ME, Fibro & other conditions. So I have constant pain and take a lot of meds. I’m still on antidepressants and fully expect to be for life, they boost chemicals I need to be me and I’m more than fine with that. But my darker days are just that now – days. In the past they would have been weeks or months, my coping strategies developed and yours will too.

I wanted to share this with you not because you’ll do the same or feel the same – we all walk our own path through this life. But to hopefully reassure you a little that you absolutely will find your way. Chronic illness is not an end but a shift to a new beginning, an altered life does not have to be a lesser one.

My newcomer tips?

  • Get enough rest.
  • Listen to your body, if it hurts, stop.
  • Build your pain toolkit – meds, gels, ice, heat, tens, marijuana, movies, whatever works for you.
  • Let go of worry about what others may think – it really doesn’t matter.
  • Look after you – baths, chocolate, candles, pamper yourself.
  • And always, always remember to be as kind to yourself as you would to others – we are way too hard on ourselves.
  • Practice #selfcare daily

Sending blessings, Namaste 🙏🕉️💙


Behind The Illness is Me…

Thanks to Emma, who is part of my twitter tribe and a fellow person with ME for tagging me in #behindtheillness – it’s a lovely reminder that all of us living #chroniclife are also very human! You can find her great blog at NotJustTired

So you can find below some interesting & totally not useful facts about me 😊

Four places I’ve lived:

1. Stroud, Gloucestershire (my actual & spiritual home).

2. Eastbourne, West Sussex

3. Clifford’s Mesne, Gloucestershire
4. Constantine Bay, Cornwall

Four places I’ve worked:

1. The Swan Inn – chef & barmaid extroidinnaire!
2. Stroud College – Lecturer in Floristry
3. JHP Training – teaching then management across the South West
4. Athena, Bournemouth – book retailer

Four favourite hobbies:

1. Reading
2. Knitting (very much a learner)
3. Writing – my blog, poetry & occasionally stories
4. Meditation

Four things I like to watch:

1. Criminal Minds

2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers

Four things I like to read:

1. Fantasy – swords & sorcery – Feist, Eddings, Hobbe, Douglass
2. Spiritual – Thich Naht Hanh, Ruby Wax, Russell Brand, John Kabat-Zinn
3. Thrillers – Koontz especially
4. Poetry – most recent discovery is the C14th Persian poet Hafiz – sheer beauty through words

Four places I have been:

1. Guardalavaca, Cuba
2. Marrakesh, Morocco
3. Vienna, Austria
4. Ghent, Belgium

Four things I love to eat:

1. Chocolate
2. Steak & roasted vegetables
3. Indian food
4. Lamb Tagine

Four favourite things to drink:

1. Coffee especially cappuccino!
2. Green Tea
3. Havana Club aged rum (very occasional treat)
4. Mango & Passionfruit Juice with soda and ice

Four places I want to visit:

1. Budapest
2. Iraq, Iran & Syria (ancient Persia, pictured below)
3. St Petersburg
4. Canadian Rockies

Four bloggers I’d like to tag:

1. The very lovely Wren at RheumablogWren
2. The wonderful disability advocate Shona at ShonaLouise
3. The fabulous & focused Sally at SallyJustME
4. The boldy tweeting and often amusing Elise at TheFragileBones

There are lots of other bloggers I’d love to tag, I’m just hoping I’m not duplicating the tag with my choices!

I initially thought this would be a quick five minutes, then started thinking, reminiscing….. It’s been good fun.

Namaste 💙

NYE 2017 – Reflections

I was trying to find a theme or quote that represented what 2017 has meant for me to use as a starting point, but nothing seemed quite the right thing. I know New Years Eve tends to bring us bloggers out of the woodwork, I think it’s the creative urge to somehow capture where we’ve been, and perhaps plot where we want to go. Combined with the creative muse that won’t let us know what the next sentence is until we write it.

My year has above all been a catalyst for change, and wending through it has been a series of lessons I hope I’ve learned from. I think I’m a better person than I was twelve months ago, and I hope in twelve months time I can say the same again and mean it as fully as I do now. There’s a lovely aboriginal proverb that says “”We are all visitors to this time, this place. We are just passing through. Our purpose here is to observe, to learn, to grow, to love… And then we return home.”

I have, with the support of some wonderful people, finally discovered the real Joy of Now. Not the superficial trimmings of mindfulness that is pushed by mainstream media, but the real living in the moment stuff. It’s mind altering. Life changing. And it’s so amazing! But I wouldn’t have been ready for this had it happened earlier in my life, I firmly believe that we have to become open and ready to welcome in the new and let go of the old, and do this with with self love and self compassion. Even when it’s as challenging as f*ck. Which it often is.

So how did I get here? I am forever grateful to Demi Schneider my wonderful therapist, who helped me become ready to open these doors almost two years ago now by teaching me how to love myself fully. To Ruby Wax whose fabulous book “A Mindfulness Guide for the Frazzled” gave my logical brain the understanding it needed of what was going on in my head and how to start rewiring those neural pathways. To the wonderful Calm app which helped me start meditating and sleeping again. To the beautiful Essia for leading me to The Now Project. And to Adrian from the Now Project who held my hand (literally & metaphorically) through one of the darkest hours of my life. And to the whole Now Project Team for just being here.

Does that give you a glimpse of how it all fits? How what seems random and disparate is beautifully interconnected. The Universe guides us to where we need to be even when we have no clue what we need. We can’t rush it, things will happen when they are supposed to. All we need do is live, right now.

For those that don’t know I was diagnosed with a serious lung condition in June, which at the time was believed to be terminal. It wasn’t a shock to me as I’d been expecting it for months, but even so it was definitely one of life’s “oh shit” moments. Thankfully I already had mindfulness and meditation in my life, without either I know I would have spiralled back into severe depression.

And here’s where synchronicity comes in. I attended my first retreat with the Now Project the day after I had this news. (See, I did have a point!) That evening during our informal meet and greet we were asked what we hoped to get from this weekend. As I listened to the others share a voice in my head (mine, of course) suddenly shouted “Nothing, I’m going to die, you can’t help me” In that moment everyone and everything else seemed trivial. Knowing I was about to either sob or scream I quietly left the room.

I went outside and sat under a beautiful willow, looking over the fields in front of the house. And I sobbed my heart out. Until gradually I realised I was watching the midges dance in the twilight. Above them Swifts circled and dove, catching their evening supper. And I found a measure of peace, my feet bare against the grass, grounded in nature.

Of course when someone came to see if I was okay I melted again. And Adrian, a complete stranger to me, sat with me for nearly an hour. Holding my hands. Bringing me back to my breath continually. And that is when I finally understood that we only ever have Now. None of us are guaranteed tomorrow. Nothing else is real. Catalyst.

I’m incredibly grateful to say that further testing has (at least for now) ruled out any significant impact on my life expectancy. I have Interstitial Lung Disease caused by RA, which in turn causes a lot of breathing issues, but they are manageable by moving slowly. I’ve also been formally diagnosed with ME this year, so fatigue impacts my pace too. And that helps me continue to live in the moment.

So in simple terms facing my own mortality brought me deep joy. I know I’m not the first or last to say this. And others will walk different paths. The one thing we’ll have in common is that realisation of just how essential it is to live Now. Not today or next week or next year – they don’t exist. When we combine that with real love for ourselves exactly as we are we become invincible. Even death holds no fear because it’s just another step towards enlightenment.

It’s quarter to midnight on New Years Eve 2017, the moon is bright and full. I have candles burning gently and the enchanting music of Deva Prema playing in the background. All is well right Now.

Wishing you all a blessed 2018.
Dee 💙

Excuse me, I’m Dormant…

I sort of feel I should start by apologising for being so quiet recently, especially with blogging, but the spoons have been really low for a couple of months. I feel the balance is tipping towards more ‘bad’ days than ‘good’. I dislike using those terms as they feel like I’m judging, I’ve hit the trusty thesaurus, how do dormant days and wakeful days sound?

The definition of dormant seems particularly apt – adjective: dormant (of an animal) having normal physical functions suspended or slowed down for a period of time; in or as if in a deep sleep

That accurately sums up about 40% of my time. Maybe more. At the moment I feel like I’ve hit a medical stalemate – another great word – any position or situation in which no action can be taken or progress made.

I saw my GP (who is fab) on Friday, we ran through a few symptoms where her answers were, not unreasonably, that there’s nothing that can be done. Of course if a,b, or c get worse let her know, if not do my best to continue to live around them. She has the option to refer me back into the hospital Fatigue Management team so to keep that in mind for the future.

FYI I’m not being ignored, I have ongoing support from Thoracic (lungs), Rheumatology (joints & lungs), and Orthopaedics (spinal surgery, sciatica) as well as my GP.

But none of these stop me doing this. Sleeping for 16, 18, 20 hours at a time. I track my sleep now because I’m not sure people believe me, but I’m genuinely out for the count, I don’t wake to pee, drink or eat, and a bomb could go off without me stirring. Usually after a sleep like this I wake but can barely move, it takes everything I have to stay upright just to make a coffee and maybe toast. It’s like the worst flu feeling quadrupled. I literally stagger to the kitchen and back, almost on my knees.

And every time within two hours I’m passing out again. I use passing out deliberately because that’s exactly what it feels like, it’s almost as if I can feel my body shutting down, to quote the Borg “resistance is futile”. I spend approx two to three days a week like this.

To be clear here I’ve been diagnosed with RA, Fibromyalgia, ME/CFS, and RA-ILD (Interstitial Lung Disease). All of which will be contributing to this dreadful fatigue, though my suspicion is this is much more ME than the others. I’ve attended pain management sessions and fatigue management sessions which mostly revolve around pacing and CBT. Unfortunately as anyone with ME knows the use of CBT as a tool to improve fatigue has been totally discredited. And pacing just doesn’t work.

Pacing is actually a very simple technique. One monitors one’s activity and fatigue levels for a few weeks on a chart, then you calculate an energy ‘baseline’. So let’s say the average day allows you three hours of low activity. You plan around this and you slowly work on building up. Sadly this model assumes a number of modes of behaviour are manageble for the patient – such as getting up at the same time every day, sleeping for the requisite number of hours per night, ceasing to nap during the day, and that after sleep one feels refreshed.

None of this applies in my case. When I mentioned to the fatigue team that I can spend two or three days a week sleeping (dormant) they told me this “wasn’t usual” for ME. I thank the stars for the Internet, there is a lively community online who very quickly taught me I’m not alone, and I’m definitely not an aberration. In fact I’m fortunate, there are people with ME who’ve not left their beds for years.

I can sleep four hours or twenty, I never wake feeling refreshed. I can’t choose to not nap when I can be awake and say, reading one minute and the next it’s six hours later. Yes, my internal nap monitor is screwed too, it’s never just twenty minutes! I can’t work to a normal “sleep pattern”, when I’m dormant I not only sleep through alarms, I’ve slept through my cleaner coming and going, and a few weeks ago just crashed on the sofa whilst a friend was building me a walk in closet, thankfully he understood as his mum has ME so he finished quietly and tiptoed away. Bless him.

But I think these examples clearly show this is not down to me giving in or not trying. I don’t see anywhere to go from here clinically. So my only realistic option is to continue to flex and enjoy my Awake around my Dormant.

Yes this makes planning difficult. There are hospital appointments I’ve had to reschedule, blood tests I’ve missed. More important to my sense of engagement with life is the birthdays, the weddings, the lunches and the family events I’ve missed. It’s been a long time since I’ve felt guilty for these, I know now I have to listen to my body, but it still saddens me to have to cancel.

Is this difficult to live with? Yes of course, saying otherwise would be disingenuous. I think anyone faced with the reality of losing maybe three or four days a week, every week, for the rest of their life would be floored. I think the blessing here for me is that this hasn’t been a sudden notification, it’s happened gradually over the past few years and whilst I’ve railed and wept I’ve also become accustomed to these limitations being my life.

It’s just that this conversation on Friday finally drove home that this is here to stay. There is no magic pill or potion, therapy or faith that will make this change. Stalemate.

And so comes acceptance. So I will continue to try to see my dormant days as necessary recharging, to allow my wakeful days to happen. I will continue to try every day to find both gratitude and joy in my world. I will continue to use my toolbox containing items as random as meditation and tramadol, heating pads, mindfulness and antidepressants. And I will continue to find my joy in the smallest and often unlikeliest of places. Eyes wide open.

Namaste 🕉️

Healing begins with Love 💙

I’ve been pondering for a few weeks where to start with this blog post.  I know what I want to say, I’m just hopeful it comes across as I mean it to!

In March this year, following 18 months of chronic illness with RD, Fibromyalgia & degenerative disc disease all playing together, plus the recent death of my Mother I kind of reached a tipping point.  I’m deliberately not using the word breaking! But I’d had month after month of pain, depression, anxiety, aching, medications,  fatigue, painsomnia and nothing was really changing – I wasn’t feeling ‘better’.

It was a sink or swim moment.  I could either drift along as I was, feeling pretty miserable most days, or I could look for help.  But what? Who? Where? So I hit trusty Google and followed where it led.  And boy was the universe ready for me to reach out! I started looking at mindfulness retreats, found lots of very out there options which included raw foods and tents, which aren’t necessarily my scene!  But whilst stumbling from link to link I came across the wonderful lady who was to change my life.  There is no other way to put that, and I truly believe we were drawn together.

Demi Schneider is simply one of life’s good ‘uns, and an insightful, generous and empowering lady.  A Clinical Hypnotherapist & Psychotherapist, Metaphysical Life Coach & Author of “Beat Your Depression For Good” – she powerfully challenges and guides us to look within for our own joy. To care for and love ourselves.  To be happy!


In simple terms what we think is all powerful. And it’s our choice! And that choice dictates how we feel, emotionally and physically.

It’s easy, rational and possible, but it takes learning, acceptance, meditation and work.  We have years of learned negative thinking patterns to turn around before we are able to allow ourselves to truly be open and actively listen to what our body is telling us. 

It’s known that the subconscious mind can’t tell the difference between imagination and reality.  So by changing our thought patterns to positive (for example repeating ‘I am calm and in control’ when feeling anxious), we physically change the chemicals our brain releases – increasing serotonin.  And when you feel better, you feel less pain. 

Does it relieve pain? A little, yes, and I’m in my early days.  Is it worth it? Absolutely, allowing peace and acceptance into our lives brings joy and happiness to our minds and our hearts, regardless of circumstances.  Loving ourselves rocks!

It’s not a magic cure, but it is a much nicer way to live, especially with chronic illness when things can seem very bleak.

Namaste 💙