The Unexpected Outrageousness 

I find myself thinking on the big stuff this afternoon, a mixture of a few friends recent story of illness and a slightly rose-tinted memory of carefree days before all the adult stuff came along and stole the freedom. I don’t mean I’d change anything, marriages, lovers, friends, & family have all come, and some have gone on or melted into faded snapshots of another time, all an essential part of me in their way.

I just had a moments hunger for that freedom we feel at say, 17 or 22 when you are still far too young to have your shit together, but gladly still too young to notice. The world is yours, the years lie ahead to be filled with anything you can imagine and love comes easily and quickly without doubts and worries beyond tonight. I don’t think we ever feel again as free as we do in those early adult years, though perhaps it is only felt so deeply with hindsight, viewed with sepia tones.

I am blessed to have a few very close friends that I would literally trust with anything. Some are newer by comparison, but some go back to those earlier memories of late late nights, too much wine, lazy Sundays, passionate conversation and laughter that cramped you over with a pleasurable ache.

The paths we’ve followed since have been meandering and varied, I’ve seen careers grow and change, babies born and come to early adulthood, and loving relationships grow beautifully strong, or be ended by death, neglect or ennui. All of these changes, the loss, the grief, the growth and the joy are what you expect, life moves on and we accept and learn to roll with the punches. In the same way perhaps the loss of a pet helps prepare a young child for grief, the early teenage relationships and heartbreak are preparation for the pleasurable hell that is serious dating.

Nothing prepares you for serious or chronic illness. Certainly at 17 or 22 I never imagined that I or one of my friends would end up being sick. Properly medical hospital type sick. As it happens I have my own illnesses, and a beautiful friend has been sent far harder trials.

We met today. I was trying to describe or capture just for a moment the beauty that exists in being able to sit and laugh, really laugh with her at the whole damned medical process, the tests, the letters, the constant appointments, the drugs, the morbidity and the side effects, the reduced life expectancy, the medical dictionary your mind becomes in your relevant field, and the phrase that came was ‘we were laughing at the unexpected outrageousness of the roads we travel’.

The Unexpected Outrageousness.

Sometimes a phrase can just capture a feeling. Being serious and sad can sometimes have it’s moments when you’re facing the reality of the fragility of life head on, but what’s far more important and appropriate is laughter.

Yes, life has become bloody outrageous, the kind of outrage that makes you want to punch the earth and scream at the sky. And instead by reaching deep inside for the shared humour that says f*ck this, for the ridiculous medical farce life can become, you find that 17, that 22, and laughter cramps you again with that pleasurable ache. May we live forever.

Weighing the risks 

Well here I am, roughly 20 months since diagnosis with RD and more or less no further forward.  Although I can now quote some really fancy medical terms! Most of my joints are now affected in some way, my mobility is very limited and the fatigue is a constant companion. Having tried all the basic DMARDs, Methotrexate (damaged liver), Sulfasalazine (no effect), Hydroxychloriquine (no effect) and Leflunomide (horrid side effects) it’s come time to move on to the biologic medication.  

My rheumatologist and I have decided to start on Humira (Adalimumab) which means fortnightly self injections using a click-pen delivery system. I’m just waiting for an appointment to go through the logistics of delivery, storage etc and then it’s a go. I can’t wait. 

One of the reasons this medication and others like it are not offered until other drugs have failed is the cost. According to the most recent information I can find online, Humira costs the NHS £352 per injection. With 52 weeks in the year that’s over £18,000 per year. Shocking isn’t it? I’ve only become conscious of medication costs since chatting with my lovely RD friends in the US, it’s a horrid reality for them every time they so much as call a doctor. So I’m very grateful for the NHS right now, believe me. 

So what is a biologic, why is it so special? They are actually genetically engineered proteins derived from human genes. All very modern medicine!In simple terms they target specific areas of the immune system, Humira in particular blocks a chemical reactor that causes inflammation called TNF. Biologics are only prescribed for moderate to severe RD, and have revolutionised treatment  over the past 20 years or so. This more aggressive treatment can help reduce the chances of long term disability and have changed many people’s lives.  I’m hoping this will be my ‘magic’ and allow me to enjoy a better quality of life, which is why I’m prepared to take the risks associated with biologics. 

They can read as very scary. Even on Humira’s own website, the first thing you see is a warning.  Firstly that serious infections can occur whilst on Humira and some people have died.  Secondly that there is an increased risk of some cancers. According to the Journal of the American Medical  Association the risk increases three-fold the chances of  Lymphoma, skin cancer and a specific type of T-cell Lymphoma that commonly results in death. Plus of course the full range of more ‘normal’ side effects. Definitely not to be taken lightly. 

So why take this risk? Two things:

  • Firstly I would really like some proper quality of life back. To be able to get out and about more, not have to cancel arrangements because I’m too ill or too fatigued. I love my friends, I’d like to see them more often. Believe me fatigue is incredibly debilitating, unless you’ve had to sit down exhausted after something as normal as taking a shower you have no concept of just how awful it makes you feel. 
  • Secondly I’d like to slow the progression of my RD and hopefully keep my joints working to some degree. My RA hasn’t been controlled at all yet and whilst my joints haven’t become obviously deformed they is ongoing damage occurring which causes incredible pain. 

So yes, I’m excited. I know some people who refuse biologics because of the risks, and that’s absolutely their right. However for me there’s no alternative but to say a heartfelt yes please. If I can lessen my pain and swelling, and hopefully reduce some of my other RD symptoms like night sweats and  hot flashes, AND get some energy back then I’ve got to grab that chance with both hands! Maybe my dream of returning to work of some kind could even become a reality! 

As with most RD drugs I won’t know for around ten weeks if this is working for me, so it’s not an overnight fix. And I’m fully aware it may not work for me, I have to keep that firmly in my mind too – not negativity but reality. My rheumatologist has already said if this doesn’t work she will try another biologic which is delivered by weekly infusions, so this isn’t the end of the line by any means. 

I’ll obviously post here as soon as I know more and receive my doses, in the meantime you’ll still find me napping 😉

(As always please do not consider this post in any way medical advice, any errors are my own!) 

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 💙

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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.

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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. 

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 🙂

Passive Patient or Empowered & Educated?

It’s different things that attract our focus in #chroniclife – and unsurprisingly it’s often health related. Yes it’s slightly nerdy, often involves research, and it’s my decision,  but I’d rather be on top of managing my health than leaving it all to someone else. The real choice here is do I want to be a passive or an empowered patient, and I don’t do passive!

It was solely my decision to come off Arava (Leflunomide) on 16th May because I was suffering horrid side effects.  I researched manufacturers warnings, I looked at scientific and anecdotal evidence, and I weighed the pros and cons as they applied to me. I also applied the old “trust my gut” test – we have to remember we are the only ones who know exactly how we feel.

Ten days later and so far (touch wood) the indescribably severe itching that landed me in the hospital out of hours has stopped,  I’m not ‘passed out’ for 18 hours a day,  I’m no longer vomiting randomly and fairly frequently, and my BP meds now have a fair chance to work instead of being overwhelmed by the Arava. Hence my excitement at my BP slowly but surely dropping to near normal most days this week!

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Anyone with knowledge of RD is aware that we are at much higher risk of heart disease, so keeping my blood pressure on an even keel is really, really important.

As with all DMARD’s what works fabulously for one does nothing for another,  I know people who swear by Arava and that’s fabulous.  I was on it for just over six weeks, and while I appreciate that was early days I felt no benefit.  However it definitely didn’t agree with me to the extent that I was not prepared to give it longer just in case. Unfortunately we are still at a stage where we must trial each med like Guinea pigs,  waiting out both the RD activity and the side effects for up to four months before knowing if this is the med for us.  When you consider that with dmards and biologics there are over fifteen meds to try, some of which work better in combination, that can involve a lot of waiting!

Where I go next is a conversation with my rheumatologist, I’m slightly apprehensive as I’ve now tried all the basic dmards and the next step up is biologics.  I’m not nervous of taking them, I’m more concerned that for one reason or another I won’t meet the UK criteria.  I have RF+ RD,  I’m in constant pain, suffer intense fatigue, daily stiffness, I have ultrasound evidence of active disease, but I don’t always get the obvious swelling and my bloods often bear little resemblance to my disease activity/how I’m feeling.  And of course the only reason the strict criteria is in place is cost! As they say in the papers…. Watch this space!

Flying the Spoonie Way ♿✈♿

I’m in beautiful Cyprus at the moment staying with family, and someone asked about how I found the flight now I have RA and Fibromyalgia with mobility issues. I’ll share my tips as it’s absolutely doable, it just takes a little thought and planning, especially if like me you travel alone.

1. Use Airport assistance ♿ – it’s free of charge and I couldn’t travel without it.  You get transported in a wheelchair right through airports both ways.  An absolute must, it saves spoons and keeps pain levels down.

2. Book extra legroom seats. Worth the few extra pennies,  it does make a massive difference to how much you can wriggle and stretch, very important if you don’t want to arrive as stiff as a board!

3. Hydrate.  Lots.  Water is your friend on a plane – that actually applies to anyone – alcohol is so dehydrating.

4.  Face mask.  Yes, you probably look a little nuts, but when you have a suppressed immune system you do not want recycled germs. Planes are the worst. I always wear one when I fly – paper ones like dentists have, cheap as chips. Pop on some shades too & look mysterious 😉

5. Neck pillow.  I have an inflatable one, my neck is affected by RA and it saves so much pain, even if you don’t sleep it helps you support your head. I always book a window seat so I can ‘lean’ and get comfortable.

6. Meds bag.  I have a large multi zipped handbag I use to transport my meds – never put them in the hold, always carry on.  Take everything in original packaging with prescription labels attached,  it saved me a lot of odd questions on a complete bag search last time! I include meds, BP monitor, tissues, voltarol gel, pain relief etc.  Only thing that goes in the hold is oxycodone as it’s liquid. You can get notes from GP to allow you to carry on but this was just easier.

7. Give yourself permission right now to have “rest days” whilst your away.  It’s really,  really easy to overdo it, and then you end up spoiling days on end. Let your schedule be as flexible as it can be,  it’s better value to fully enjoy 11 days out of 14 rather go all out and miss half the holiday.

I’m in Cyprus staying with family, and I know I will spend tomorrow on the sofa because I’ve had two fabulous but exhausting days with my nieces/nephew.  They go back to school tomorrow so I can rest :mrgreen:

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It’s very important not to guilt trip yourself into a painful flare,  by pacing and resting you will relax properly and enjoy more of your holidays – after all that’s what they’re for!

Happy Holidays!

Flying the Spoonie Way!

I’m in beautiful Cyprus at the moment staying with family, and someone asked about how I found the flight now I have RA and Fibromyalgia with mobility issues. I’ll share my tips as it’s absolutely doable, it just takes a little thought and planning, especially if like me you travel alone.

1. Use Airport assistance ♿ – it’s free of charge and I couldn’t travel without it.  You get transported in a wheelchair right through airports both ways.  An absolute must, it saves spoons and keeps pain levels down.

2. Book extra legroom seats. Worth the few extra pennies,  it does make a massive difference to how much you can wriggle and stretch, very important if you don’t want to arrive as stiff as a board!

3. Hydrate.  Lots.  Water is your friend on a plane – that actually applies to anyone – alcohol is so dehydrating.

4.  Face mask.  Yes, you probably look a little nuts, but when you have a suppressed immune system you do not want recycled germs. Planes are the worst. I always wear one when I fly – paper ones like dentists have, cheap as chips. Pop on some shades too & look mysterious 😉

5. Neck pillow.  I have an inflatable one, my neck is affected by RA and it saves so much pain, even if you don’t sleep it helps you support your head. I always book a window seat so I can ‘lean’ and get comfortable.

6. Meds bag.  I have a large multi zipped handbag I use to transport my meds – never put them in the hold, always carry on.  Take everything in original packaging with prescription labels attached,  it saved me a lot of odd questions on a complete bag search last time! I include meds, BP monitor, tissues, voltarol gel, pain relief etc.  Only thing that goes in the hold is oxycodone as it’s liquid. You can get notes from GP to allow you to carry on but this was just easier.

7. Give yourself permission right now to have “rest days” whilst your away.  It’s really,  really easy to overdo it, and then you end up spoiling days on end. Let your schedule be as flexible as it can be,  it’s better value to fully enjoy 11 days out of 14 rather go all out and miss half the holiday.

I’m in Cyprus staying with family, and I know I will spend tomorrow on the sofa because I’ve had two fabulous but exhausting days with my nieces/nephew.  They go back to school tomorrow so I can rest :mrgreen:

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It’s very important not to guilt trip yourself into a painful flare,  by pacing and resting you will relax properly and enjoy more of your holidays – after all that’s what they’re for!

Happy Holidays!

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!

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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 💙