Poem – Cessation

Posted on by SingleRheum

The colours around me all merge to a blur, the world is moving too fast
I see through a mist and I hear through a fog

And the ride keeps spinning around

The feelings I once had of laughter and hope seem to be slipping away
I reach and I yearn to touch them once more

And the ride keeps spinning around

The cage I am trapped in tightens each day, the bars seem closer at night
I shrink from their touch as I hide in the pain

And the ride keeps spinning around

The energy needed to move me has gone, I am empty,  withered and dry
I ache for cessation, an end to this life

And the ride keeps spinning around

The noise of the world keeps drowning my cries, my whisper is lost as I turn
I’m screaming in silence oh please make it stop

And the ride keeps spinning around.

Fatigue, the crushing weight

Posted on by SingleRheum

And again today I feel like I am losing myself to the demon that is RA. 

From no sleep to hours and hours, punctuated by half waking moments where I heard my neices and nephew playing in the garden but was too bone achingly tired to even lift my head from the sofa. 

It felt as if all around me the beautiful island of Cyprus was enjoying the sunshine, but I was trapped in a separate place where energy may as well have been unicorns.

Trying to explain fatigue is incredibly difficult.  Ask almost anyone who suffers with RA and they will tell you how debilitating it is, I’ve had many agree with me that the fatigue is worse than the pain.  Seriously, offer me a partial cure for RA that will either remove the godawful joint pain & corrosive damage, or remove the fatigue, and I’ll take the latter. 

It’s bearing a crushing weight even when you’re laying down and not moving, it’s feeling totally, mind numbingly, exhausted regardless of two hours or twenty hours sleep.  It’s being surrounded by a cushion of dead air, it separates you from the real world where people live and breathe and move and laugh and just be without it being so f*cking difficult. It’s walking to the bathroom and back and having to sit down and rest. 

Add all that to an constant aching that doesn’t leave out a single part of your body.  That’s fatigue.

It is the most debilitating thing I have ever known, and the most frustrating.  It makes me angry and it makes me sad  and it sometimes makes me scared for what lies ahead. 

I am trying very hard to stay positive, I’ve only been on methotrexate for 6 weeks, prednisone for four weeks, I’ve now had my folic acid upped and we’ve added vitamin D to the mix.  It could all start working any day.  The odds are between 30% and 50% of this combination of meds working for me.  Not the best, but certainly possible. 

In the meantime I’m mentally crossing my fingers (can’t do it physically anymore!) that I’ve got enough spoons tomorrow for the planned visit to Limassol Castle and lunch with my sister-in-law,  it’s a couple of hours, should be easy, right?!!

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Relaxing is Exhausting!

Posted on by SingleRheum

It’s 8am, the sun is already shining down on the lovely island of Cyprus and I am with my fabulous family.  In fact I can hear the kids chattering upstairs and I suspect they’ll be down soon, full of energy for the day. 
All of this is amazing and I know how lucky I am to be here, so this is very much an observation not a moan!

I just hadn’t ever thought before about how exhausting holidays are.  This is my first trip post RA diagnosis, to be honest getting here was vile. There can be few greater tortures for an RA sufferer than being trapped in a plane seat for 4.5 hours, let me assure you! Add to that packing, driving to the airport, negotiating said airport etc and it becomes a day of extreme challenge and a lot of pain.  My left hip in particular apparently hates being unmoving for that amount of time and was burning brightly for hours after the flight.  But that’s why mother nature invented tramadol right?!!

I arrived around 11pm at my brothers, so my first full day here was basically spent on the sofa reading and restoring spoons. Frustrating but I literally had no choice.  Yesterday was better but it was mtx day, so whilst I was up at 7am I had to have an hours nap at 9.30am – all very rock n roll!

My plan was to see the Tomb of the Kings in Pafos, but energy levels just wouldn’t allow me to contemplate two hours hobbling around a hot archaeology site.  I had a very slow walk around Pafos harbour instead, followed by lunch and a one hour boat trip along the bay, but again the frustration of plans thwarted, I love old ruins!!

I have to keep reminding myself over and over I now have limits, if I want to function two days in a row I must limit my activity on both days, it’s that simple. 

Having never been one for sitting around on holiday (seriously people, there’s stuff to see!!) this is a new concept for me.  However, I have my brother, his amazing wife and my gorgeous neices and nephews for company, so even the thought of the flight home will not remove my smile.  And will I travel here again? Try and stop me, FURA!

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