When less becomes more

I realised this week that I’ve been blogging about RD for over a year! So much has happened in that time, the blog I wrote this week last year, Living in Limbo, was about finding myself homeless, things were certainly very up in the air and nothing felt solid or stable.

I’m very grateful to have had some amazing support since then, I’m settled in my little bungalow with my cats and feel on a much more even keel.  Constant change is unsettling, especially when it’s not because of choices we’ve made.

I’d say my key word for the past twelve months has been ‘acceptance’.  It’s been a long process but it’s definitely the fulcrum around which my improving mental health resolves… I can feel a whole separate blog there 🙂

It’s often the simple things that can resonate with us the most.  A conversation with my psychotherapist a few months ago is a great example, I’d been telling her how I kept looking ahead and just seeing no end, no way out of feeling ill and frustrated and trapped and out of control.  She said

‘everything changes – from your pain levels to the weather’

and although it didn’t help immediately as I was having a low day it stuck in my mind, and she’s absolutely right. 

Things do change, they will change again, the trick I’ve since found is to try to live more in the moment, enjoy each hour, each day, each small success – looking ahead is actually counter productive, especially when it feels bleak.

Depression is horrid, I’ve had it for over four years now, and of course it’s often common for people to start suffering post diagnosis, which is hardly surprising. But I honestly believe with a combination of meds and talking therapies it’s absolutely possible to enjoy better days!

The second simple thing that resonated was even more basic, but I strongly believe it’s worth sharing. 

Change that ‘why me? ‘ to ‘why not me?’

I know it sounds really simplistic but just churn it over for a while. Think about what it actually means.  “Why me” implies some cosmic force has said ahh yes you, you need RD! Isn’t it much more likely that it is just down to a random combination of genetics and environment? The simple fact is that it’s  not personal!

RA has literally turned my life upside down this past year, I first lost my health, then consequently my home, my job, etc etc BUT….  It has over the same period made me completely reassess my priorities, my way of life, and I’m now starting to work out what it is I really want. 

I’m not there yet and wouldn’t pretend to be, but boy it feels good to have had the breathing space.  I’ve been forced to step off the treadmill, to stop, take my time, breathe! And the ‘worst’ happened and you know what? Not only have I survived but there is still joy in my life, and in being alive, I’ve just have to look a little harder and in different places. Meditation has helped hugely. I’m more grounded, I’m more peaceful, my life is simpler and calmer, and this enables me to focus on self care and my hope that I will be able to return to some kind of contributing employment in the future.

Yes, of course RA limits what I can do and when – it probably always will, but I will not let it limit who I want to be.  You too will find a way, I promise 💙

image

Advertisements

Painsomnia, it can be beaten!

Speak to anyone with chronic illness and they’ll know exactly what painsomnia is.  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.  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.  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.  It’s run by a team of physio, nurses and counsellors.  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.  So I wanted to share.  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.  I now get into bed at around 11pm pm each night.  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.  Yes  I’m serious 🙂 Turn it away or remove it from the bedroom.  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”  Familiar?

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

5. Ditch caffeine.  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.  Really think about this.  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.  Believe me I know how very hard this is.  And on flare days I chuck this out of the window.  But as a rule try and stay awake.  Take regular rest breaks instead of naps.

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

image

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. 

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.  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.  I’m two months in and it’s already making a difference to how I feel during the day.  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.  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.  The night before this had worked and I went back to sleep.  This time no.  So I got up.  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.  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 🙂

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.

image

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 🙂

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.  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,  it’s actually incredibly common.  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,  and as I’ve said before I may be opinionated but I’m not closed minded ☺ 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