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:

image

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 💙