Mandala Metaphor…

We all know what Mandalas are, right? Those pretty round pictures that come in mindfulness coloring books? They have a number of interesting historical meanings, they are said to be a visual metaphor for the innate order and beauty of the universe, as well as metaphors for political, psychological and social statements. Buddhists, who patiently create them in coloured sand tend to use them as a metaphor for transformation and enlightenment.

It’s the transformation and enlightenment aspect that has grabbed me today, though not in that particular order. It’s fascinating to me that this little enlightenment has come through the form of the mandala, which has made me reflect on transformation. Sometimes the universe sends what we need ๐Ÿ•‰๏ธ

Below is the link to a video that was shared today by the lovely Lene – please do follow her @TheSeatedView , you won’t regret it! It starts at 7m32s so you can see the exact segment we were viewing, which very beautifully shows hand exercises in the form of mandala shapes – clever and easy on the eye.

However… I watched, then went back, paused, watched again and all I could think was ‘are they really bending their hands that far?’. Yep, I can confirm they are, I’ve viewed it verrry closely. And what hit me was that they hadn’t searched the country for four models with “super-hand” abilities, this was how other people’s hands move. All the time, without them even thinking about it.

I tried. And my hands can’t do these movements, and trying hurt. I’ll be honest, I welled up for a moment. The enlightenment here is that I’ve simply failed to consciously notice over the past couple of years just how bad my hands have become. So in a way it was like a sudden… revelation. Almost a shock. Weird huh?!

I think a lot of that is down to the very gradual nature of the transformation (you knew I’d get there!). Had I gone to bed last night with my hands of three years ago, and woken up with my hands of today I’d have been screaming for doctors to fix me. Over three years I’ve slowly made adaptions, changed the way I do some things, stopped doing others, used tools to support etc.

A mish mash of coping methods that has added up to my odd ignorance of just how bad they’ve become. It’s mostly that the RA damage to my tendons and enthesitis have massively restricted my movement, leading over time to loss of hand agility and strength. So I wanted to review exactly what coping methods I use… And to share the extent of how much RA has changed a myriad of small daily tasks to raise awareness. They might even help you, bonus ๐Ÿ™‚

  • Changing the bed – my cleaner does it, I can’t even put a quilt cover on or stretch on a fitted sheet
  • I have no grip strength – earlier I needed to open a flat plastic tray of bacon, I made the mistake of trying to grip the corner & pull the plastic film up – rookie error, that finger thumb grip kills me. Its like opening a yoghurt pot or a carton of milk, teeth or knives are needed
  • Kettle – I no longer can use one. I have a Breville One Cup, and when I fill it with water I have to use a plastic jug half filled and use both hands to hold it to pour
  • Tin opener – can only use electric one, the other was binned long ago
  • Jars etc – I have an amazing rubber square from my OT which will grip much better than I can, but occasionally I can’t even open with that & I give in or grab a neighbour
  • Cooking – am slowly giving it up, I last peeled & chopped veg a few weeks ago, then sat down & ordered some pre prepped food & some ready meals. Of course I also can’t move hot saucepans, another reason to keep it simple & safe
  • Cleaning – getting a small stubborn stain out of the carpet recently lost me the use of my wrist & elbow completely for three days – from now on my lovely cleaner’s job if needed
  • Sewing – not that I do loads, but machine only, small movements for hand sewing & even pinning hems really hurts
  • Reading – my biggest love but damn, holding a book is hard. Moving more & more over to my kindle app on my tablet
  • Dressing, washing, doing my hair… the only way I can can dry my hair is to drop my head down and use my knee to support my arm holding the hair dryer. It’s complicated ๐Ÿ™„๐Ÿ˜…
  • Writing by hand for longer than about three seconds… ๐Ÿคฃ

I’m sure there are other people things that will occur the minute I publish this, but frankly I’d bore myself, you get the picture. Yeah, so my hands, pretty crap and mostly painful. So I definitely won’t be doing the Mandala hand workout anytime soon.

But that doesn’t mean I can’t appreciate the very clever beauty of it. Namaste ๐Ÿ™๐Ÿ’œ

https://www.pscp.tv/w/bZo90nR3LTcxMzA5MjM2NHwxTW54bmVhZXp2akpPRqjkRT1-GsBc73pklr4lZ3TaiR4bYZj_G6gv3S73Mew=?t=7m32s

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Emotional Eating…

I’ve been thinking today as I sorted out my sewing box (how many buttons?!) and my stationery box (how many pens?!) about the how’s and why’s of my relationship with food, and what lies behind it.

I don’t know anyone, overweight or underweight, who doesn’t have problems with emotional eating, and in some ways I think it’s the hardest thing to step away from. Unlike with heroin or crack or alcohol where one just abstains from the substance to deal with the addiction with food we can’t, we all have to eat to survive.

And these are deeply ingrained behavior patterns melded into our psyche as children then carried through to adulthood where they become a subconscious belief – the belief that certain foods make us ‘feel better’.

What do we do with a crying baby? Feed it. How do we cheer a toddler out of a mood? Food. What do we reward children with when they clear their plates? Sweet food. (two lots of issues there – we are all trained not to ‘waste’ food from an early age so we stop noticing when we’re full). What do we have as treats on special days, holy days, birthdays? Food, food & more food.

It’s no big shocker that we associate food with comfort more than anything else. When we eat that bar of chocolate or packet of biscuits we are unconsciously reaching back through time to our first feeds, when food also meant being held close, safe & loved, with no worries or cares. That’s a really strong pull, and in essence it’s what we’re fighting.

I don’t know what makes the difference between people who have a healthy relationship with food and those who don’t. People who can have two chocolates and put the box away for another time. Maybe it’s nurture, maybe nature. I’m sure the answer would be worth millions!!

But I do know my eating issues started in my early twenties, and I’ve had them ever since. I can look back at times when I was really happy and the weight fell off, and then sometimes when I thought I was happy and the weight was piling back on anyway.

For years I’ve watched furtively as slim people ate chocolate bars or ice cream and thought “well they can have them, why should I go without”. Yes they. They (the slim people) are obviously a race of aliens with incredible willpower. Except no. They simply view food as fuel, enjoyable fuel but without the emotional baggage we attach to our eating.

I don’t know what the answer is, but I do know what it isn’t for me. Diets. Shakes. Low Carb/fat/protein. Intermittent fasting. Atkins. Weight watchers. Banning sugar. Spending three mornings a week at the gym. Yes, I’ve done all of these plus others over the past twenty eight years. And I’ve lost weight. And on it has gone again because I haven’t tackled the cause. My mind.

So for me the change I make now has to be permanent, and yes, if that means I calorie count for the next twenty years so be it. Because I can’t be trusted not to. Interestingly I’m not finding this hard. Difficult yes, but not hard.

I’m rediscovering a love for fruit and salad and veggies cooked well with flavour. I’ve found a wonderful organic granola that has no added sugar or fruit and its gorgeous. I’m remembering to reach for grapes or a carrot or a rice cake if I’m peckish. I’m actually planning meals on the days that I can cook, and enjoying preparing them.

Believe me when I say I could happily ditch this tomorrow, go back to eating mostly crap and put weight back on in a heartbeat. But you know what? I want this more. I don’t want to have to use an extender on plane seat belts. I don’t want to keep looking for the sturdier chairs. I don’t want to keep wearing shapeless tunics because they ‘cover the bumps’. And I don’t want doctors to be less concerned about my symptoms because they look at me & see fat. I want to remove that excuse from their arsenal.

But most of all I want… Leather trousers, 50th birthday ๐Ÿ˜Ž๐Ÿ‘–๐Ÿ‘ข๐Ÿ’›

As always comments & opinions are my own and not a substitute for speaking with a medical professional

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 ๐Ÿ™๐Ÿ•‰๏ธ๐Ÿ’™

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 ๐Ÿ˜Š

Four places Iโ€™ve lived:

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

2. Eastbourne, West Sussex

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

Four places Iโ€™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 Iโ€™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 ๐Ÿ’™

Please watch #Unrest

Some of you may know I have Myalgic Encephalomyelitis, or ME/CFS. Many of you will have no idea of what that actually means beyond “being tired” which is so far from the truth. For too long the medical profession & the media have treated ME/CFS as a joke, a mental illness, or fakery. It is none of the above, and the mindset is insulting to every single one of us.

It affects waking & sleeping. It affects cognitive thinking and speech, memory, writing and listening. It causes seizures and myoclonic jerks. Clumsiness. Bowel problems. Joint pain. Muscle pain. Exercise intolerance and PEM (Post Exertional Malaise) which can last for weeks or months. Flu like symptoms. It affects every minute of waking life every single day.

In the face of ignorance and incompetence from those with whom she sought help, Jen did what many of us do. She went online and found a tribe. Somewhere where we are heard, seen and understood. Where we are validated.

She then went much further, eventually creating and filming Unrest. This is her story, but it’s also our story. Thankfully I’ve never been as severe as Jen, I pray I never am.

But I have periods of days when I am invisible, when no-one sees me. I don’t get dressed or leave the house. When I wake from an 18 hour sleep then have a three hour nap. When holding a conversation is impossible. When simply sitting up is just too hard, let alone leaving the bed or sofa. I am too often one of the #millionsmissing

Please watch #Unrest – it’s now on Netflix. The link to the trailer is below. Yes it’s hard viewing. But it will open your eyes to the reality of the lives of millions with ME.

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 ๐Ÿ•‰๏ธ

Things I wish I’d known..ย 

What do I wish I had known at diagnosis? This started out as a short response to a seemingly simple question and ended up here, I guess I always figure why use ten words when you can use hundreds!

1. That there is a fantastic, amazing and committed online support community. That these strangers would become my home, my family, my friends. There is an amazing bunch of people out there, living #chroniclife just as I do, and they are all passionate about providing support, information, safe places to chat and vent, and somewhere to go at 3am when the regular world is asleep.

2. That getting the diagnosis is not the end, it’s the beginning. Just after I very first joined a wise RA’er told me that this is a marathon, not a sprint. Three years later I get it.

3. To take all the RA stuff seriously, but learn to laugh at it at the same time. It’s very easy to get bogged down under it all, so spot the funny moments and treasure them, they do help! (Getting stuck in a hotel bath springs to mind!)

4. That everyone’s RA is different. There are similarities within recognised parameters, but you may suffer some things badly and others not at all. That doesn’t make you odd or weird, we all feel this differently
5. That #selfcare is the single most important thing you’ll learn to do. You can’t pour from an empty bucket, so look after you properly, then you can be there for others. Putting even family before yourself is a mistake, I always think of the airplane oxygen rule, you first, children next.

6. That it’s perfectly possible to have even severe RA and live your life with love and joy and hope. You’ll find your way, and there are others who are here to help, always.

7. That it’s OK to scream and rant and rave and be angry too. We all do it, venting is welcome! Letting off steam occasionally is I believe an essential part of processing and accepting your diagnosis

8. That no one can tell you how a medication will work for you. Not your rheumy, not your doctor and not us. Unfortunately RA treatment is trial and error – many people hit their magic med first or second time and probably never join online groups because they don’t need them. Others will have meds fail them over and over, or provoke allergic reactions. The only way to know what will work for you is to try it with your rheumys support and guidance.

9. That you will find your way through this. You’ll learn how your RA behaves, what helps and what doesn’t, when you need to rest and when you need to work through. It’s not a quick or easy process, but I promise you will get there ๐Ÿ’™

RA & Lung Disease, or my struggle for breath

Firstly my apologies for sneaking in a wildcard at the end of RA Blog Week, but I’ve been suffering badly with fatigue which is unfortunately not conducive to blogging!

It’s been a long year already, and it’s left me a little tired. Let me take you back almost 12 months….

October 1st last year I started coughing. An irritating dry cough that was constantly annoying. By the beginning of December my GP ordered a chest xray ‘just to cover all bases’ and prescribed a steroid inhaler to help with the cough, which we thought might be Bronchitis.

Around Xmas I started getting breathless on exertion, and over the next few weeks this got worse. My xray came back showing ‘some scarring’. I’ll cut a long story a little shorter here but over the next few months I had a number of attempts at spirometry tests which failed as I coughed too much, though they did indicate a restrictive breathing pattern. At this point I was referred into the hospital, and after more detailed HRCT scans, Fleuroscopy, a bout of pneumonia and extensive lung function tests it became apparent that the RA has attacked my lungs.

In the last meeting with my thoracic consultant I got to see the scans, including a short “video” of my lungs breathing. It’s fascinating to see, you know me and wanting the fine detail! What it’s also shown is that on top of the lung damage – which is very likely from the RA – my right hemidiagphram is significantly elevated, though still thankfully working. The diaphragm is essentially the muscle that moves your lungs when your brain says breathe.

I’m saying it looks like RA damage because the jury is still out, there’s still a small chance it could be pulmonary fibrosis and not interstitial lung disease – further tests will keep an eye on progression of the lung damage and help identify the cause.

But essentially parts of my lungs have become inflamed, and then hardened, reducing my lung capacity and making it harder to breathe. On top of that the raised hemidiagphram is squashing the bottom of my right lung which just increases the breathlessness. We don’t know why that’s elevated so investigation is needed there too.

There is no fix, no cure. Lung tissue can’t be repaired. At the moment my consultant doesn’t feel this will significantly shorten my life, but we all know life don’t come with guarantees. I’m not being negative here, just sharing the facts as they’ve been put to me.

Unfortunately whether I live another four years or forty, I will have to live with this constant breathlessness. It was particularly difficult the first few days here in Cyprus as my lungs struggled with the hot air, making breathing incredibly hard even on mild exertion. This has now eased somewhat, hopefully in part due to the new inhaler I’m on.

But daily life has become that much harder. What makes me breathless? Making a coffee. Having a shower. Getting dressed. Turning over in bed. Walking short distances on crutches. Cooking. Basically everything. I’m also increasingly tired, probably due to low oxygen saturation levels which are being monitored, but on top of ME/CFS this has been a big drain on my already limited energy. I’m slowly learning to take pacing activity to the nth degree, quite literally tiny baby steps.

There have been moments when this has been very scary, but I’ve come to realise it’s almost like starting over again with a new chronic illness. Except this time I’m better prepared. I don’t need to slog through the ups and downs of adjusting mentally because I’ve been there. I’m certainly not willing to allow – or even in a place where – this can knock me down.

So, both mentally and physically I take those baby steps forward. I still meditate regularly, practice mindfulness and gratitude daily and these help keep me sane (ish!). In all seriousness without these I’d have been floored by yet another chronic health issue, but living in the now definitely reduces stress reactions. I’ve had my moments believe me, but they’ve been mostly manageable.

I think it’s important to remember that as with my first diagnosis of RA, this isn’t an end but the start of a new, slightly tougher path. And with the support of some amazing friends and family I can learn to live with this too.

Please remember as always nothing on my page is intended as medical advice and any errors are my own!

Painsomnia, it can be beaten!

Speak to anyone with chronic illness and they’ll know exactly what painsomnia is.ย  It’s night after night of not sleeping or very broken sleep, days of odd nap times that can last for hours so you wake up wondering where and who you are!

Unfortunately what this does is break down our sleep routine, leaving us with a mixed up body clock that has no idea of the time and is unable to differentiate between day and night.ย  I’ve had some of my most awake and alert hours when the rest of the world is asleep.

After about four years of insomnia which then turned into painsomnia I honestly thought I was screwed.ย  There was no way of putting this right again, this was just the way I roll now. And then I attended a Pain Self Management Programme at my local hospital.ย  It’s run by a team of physio, nurses and counsellors.ย  And for the first time they have me an inkling of hope that I could beat this.

They repeated many times “it’s simply down to sleep hygiene”. And I’m gobsmacked this is working, but it is.ย  So I wanted to share.ย  I know how many of my online RD friends suffer with poor sleep, and it makes us feel worse in many ways. So, here’s what has worked for me…..

(Just bear in mind these are my tips, and although I’ve pulled from what I’ve learned on the course this is definitely not hospital or medical advice)

1. Set a regular bedtime.ย  I now get into bed at around 11pm pm each night.ย  Not to sleep, but to relax.

2. Put down the phone! I don’t allow myself on my phone or tablet after 11pm – it really does keep your brain over stimulated instead of allowing it to wind down.

3. Hide the clock.ย  Yesย  I’m serious ๐Ÿ™‚ Turn it away or remove it from the bedroom.ย  When we can’t sleep we constantly time check, which just gives us another thing to worry about “oh no I’ve only got 4-3-2 hours then the alarm goes off”ย  Familiar?

4. Ditch the sleeping tablets.ย  They help you drop off initially, they do not help you sleep.ย 

5. Ditch caffeine.ย  I drink decaff tea and coffee, but hadn’t given my diet coke habit a thought! I stopped drinking it two months ago, the difference has been very noticeable.

6. Get comfortable.ย  Really think about this.ย  I now have an arrangement of 6 normal pillows, one bolster and one wedge in my bed, but it supports my joints and it’s comfortable!

7. Stop napping in the day time.ย  Believe me I know how very hard this is.ย  And on flare days I chuck this out of the window.ย  But as a rule try and stay awake.ย  Take regular rest breaks instead of naps.

8. Use relaxation tapes or relaxing music once you’re in bed.ย  Make sure you’re breathing deeply and evenly.ย  Watch some relaxing TV if you want – this is about resting and winding down.

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My TV and my stereo in the bedroom both have ‘sleep’ functions, so I can drift off to sleep, and they will turn themselves off, so no being woken by loud adverts or wasting electricity.

I kind of trick my psyche by saying I’m going to bed to relax and get comfortable – you can’t force sleep and trying is the worst thing you can do.ย 

What it’s really important to remember is that sleep patterns are a learned skill. What’s the first thing we train babies to do? Sleep at regular times.ย  It’s not something we instinctively know, we had to learn about bed times and waking up times.

So it can be relearned! It takes about two months to establish a regular sleep routine, so don’t expect overnight success.ย  I’m two months in and it’s already making a difference to how I feel during the day.ย  The fatigue is just a tiny bit more manageable. At the moment I’m just focusing on sleep times, I’m not worried about regular waking up times – one thing at a time, right?!

Have I been perfect every night? Hell no! But…. I’m carrying on.ย  A few nights ago I woke up, I had no idea what time it was as the clock was turned away. So I rolled over, got comfortable and used my breathing to relax again.ย  The night before this had worked and I went back to sleep.ย  This time no.ย  So I got up.ย  It was 4am, I made a cup of decaff, sat and looked at my phone for a while then got back into bed, where I drifted back off to sleep. I still had one completely sleepless night last week, but one is so much better than three or four.ย  Some nights I still sleep on the sofa, but – I sleep well, so I don’t let it worry me!

For me the biggest thing has been to stop stressing about not sleeping – it’s the most unhelpful thing you can do! And that’s particularly important during flares – I’ll say again these ‘rules’ do not apply during flares, do whatever you normally do to get through!

Interestingly one thing I have realised from being away recently is that actually my bed isn’t very comfortable. It’s too soft for me, which does not help my back. Hopefully I can replace this soon, it could be the final piece of the sleep puzzle ๐Ÿ™‚

Gut Instinct? Mine says no…

I was browsing through my phone media, pondering a blog today on fatigue, and then this article popped up in front of my eyes.

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Link is at the bottom of the page.

To those not familiar with the RA or indeed the autoimmune world this is one of those areas that immediately provokes lively conversation, and often dissenting views. It’s a marmite issue if you will ๐Ÿ™‚

Leaky gut is a term that’s been floating around for years, often touted by people who think gluten is evil, we should refuse all meds, and we should probably all live on organic mung beans. Served in knitted yoghurt pots. It’s a nonsense term as of course the gut ‘leaks’, it’s designed to. How else would we absorb goodness/drugs etc into our bodies?!

I’m being slightly flippant here but you can probably guess which side of the fence I fall on. My rheumatologist tells me diet is irrelevant. My personal experience tells me so. My GP agrees – standard advice is that a healthy balanced diet is best, do not exclude food groups unless you have a medically diagnosed allergy, as it causes more harm than good.

There is no scientific evidence to prove diet affects RA in any way.ย  Yet. I do keep an open mind. Honestly! However….

I’m still very dubious. I just don’t believe the answer is this simple. Bearing in mind this research has been targeted to ‘prove’ a theory already held by the researchers (and of course this is common practice), it is still full of its, coulds, shoulds, mights and maybes.

So is it possible those of us with RA have gut problems? Absolutely,ย  it’s actually incredibly common.ย  But my logical head tells me there has to be more to it, it’s not as simple as “which came first RA or Bacteria”?!

But this research comes nowhere near to explaining the following –

Why some families have clusters of Autoimmune conditions whilst others have sole sufferers?

Why some suffer from JIA almost from the birth and others don’t show symptoms until they are 40-50 yrs old?

It doesn’t explain the huge prevalence of woman over men with autoimmune.

It doesn’t explain why some patients with autoimmune commonly have more than one condition diagnosed.

It doesn’t explain why some patients who eat “clean” diets still suffer symptoms.

And some don’t.

I absolutely believe the “gut”, gallbladder, liver, pancreas etc may well be involved. We have a complicated system that relies on food of many different types to stay balanced and healthy. I along with millions of others suffer IBS alongside RD, but so do many without it.

In my own humble and very non scientific mind I strongly believe RA, along with many other conditions is genetic in origin. It might well be triggered at any point in our lifetimes by stress or bacteria or illness or injury or pregnancy, but if that genetic marker for RA isn’t there it can’t and won’t occur.

I will, with many others, watch this space, small discoveries like this often lead to other bigger things,ย  and as I’ve said before I may be opinionated but I’m not closed minded โ˜บ I actually hope for all our sakes this leads RA research forwards.

http://individualizedmedicineblog.mayoclinic.org/discussion/microbiome-biomarker-found-that-triggers-rheumatoid-arthritis/?utm_content=bufferd6eea&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer