I’ll get by with a little help…

I’ve been doing a lot of thinking the last few days, as I’ve reached the point where RA is forcing me to make some big decisions and changes.  I am still nowhere near well enough to be very active or proactive, or at the moment work,  and obviously that has an impact on my days, how I spend my time, my mood, and even more significantly at the moment where I live. 

So, I’ve been (on the instruction of my very wise GP) reaching out over the past few days, actually telling people this is me, I’m not well, and I may need help, both physically and emotionally. 

And Oh my! The response has been amazing.  I have been seriously touched and moved to tears by some of the messages I have had back from my beautiful, generous friends and family.  

Not one hint of censure or criticism, which has very importantly validated what I am doing to try and keep myself as well as possible.  It’s difficult to explain but I know I’m not alone as a chronic illness sufferer in feeling incredibly guilty and yes, embarrassed for not being able to just “get on with it”.  So very soon you start doubting your reasoning and assuming others will think the worst. 

So. Having reached a forced and unexpected fork in my road, I have new terrain to walk. I have downsized my expectations in the same way I’ll be downsizing my belongings, it’s not that I no longer have dreams and goals, they are just becoming different as my priorities shift.  I am starting to make some peace with this. 

But that would not have been possible without knowing my support network is out there holding me up.  I’ve warned my friends I may need to lean and without hesitation they have held out their hands.  I am blessed. 

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Call it Serendipity

Right at this moment in the here and now I feel happy.  I try to think mindfully, am better on some days than others, but this minute, this now, feels good. 

My plan was to meet a girlfriend for coffee today.  This happened and was lovely, we then moved to our local bar which has a courtyard garden, another friend turned up, then another and another.  We’d planned to meet but not together if that makes sense, call it Serendipity!

For the first time in ages just for a couple of hours I shoved the RA to one side quite ruthlessly, ignored the ever constant pain and refused to give it power.  We had drinks (soft ones for me),  lunch and some very silly conversation in the sunshine. 

And omg it did my soul good.  I haven’t laughed so much in ages, or talked about such nonsense, and it was so much fun that just for a while a weight was lifted. 

Of course I am now exhausted, my back, hip, hands and left foot are throbbing and aching and my shoulder is stiffening up.  I have had to lay down and will likely not move again today.  Today a shower and some excellent conversation have taken my spoons. 

But just for a while I felt alive in the sunshine, my heart was happy and free of worry and pain, and that’s the best medicine there is. Just for a while, FURA.

Poem – Cessation

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

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!

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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Expecting too much?

I left my rheumatologist’s office about an hour ago, and am still trying to analyse my feelings of disappointment. 

On paper she did nothing wrong.  She was polite.  She was professional.  She had my records.  She answered my questions.  And I walked out of there feeling like I’d just spoken to the system, not a person. 

I can totally appreciate this appt is of way more signicance to me than it is her.  RA is affecting every aspect of my life at the moment, both physically and mentally.  For her I’m just a name on an appt list for today. 

But surely the fact that she is a specialist in this area of medicine means she should get that? She discussed my bloods, she asked if I felt mtx was agreeing with me, she emphasised that mtx takes three months to kick in and to stick with it.  When I said I was still suffering chronic fatigue and had been unable to work for three weeks she suggested an increase in folic acid and to continue prednisone at lower dose of 10mg.  She ruled out lupus and fibro which was a concern of mine and said my symptoms are definitely RA. 

So what more do I want? I wanted her to ask how I was. How I’ve been feeling, how bad the pain has been, how my joints are on average, how is RA affecting my day to day activities. How it’s affecting me as a person. 

She doesn’t know because she didn’t ask that I struggle to cut up and prepare food, that lifting a kettle or pouring milk is a struggle,  that I’ve almost stopped wearing clothing with buttons or zips, that lifting my cats up hurts, that my brain turns to mush when the pain is flaring and that that scares me more than all the other symptoms. 

I know that this is a medical consult and not a psychological review, and I know that her time is precious.  But I don’t think it’s unreasonable to want to have come away feeling like we’ve had a conversation, not just an exchange of sentences. 

The question is do I send her a copy of this blog? Hmm…..

Poem – Invisibly Drowning

The weight feels like water, running over and down and around and under me
It twists my perception until I no longer recognise up
This invisible drowning, choking my mind and my soul
My thoughts turns to water, all liquid with no train to grasp
I see land all around me and it teases me with a veiled normality
My limbs twist and ache, heavy with memories of movement and ease
I reach for a branch, a twig, a leaf, anything to keep me floating
I know that swimming is forever beyond me, that tide has turned
And again today, I fight the call of the depths
Where there is no weight, no water, no pain, I strive just to float
All the time invisibly drowning

Swapping Exhaustion for Sanity?

 OK so one day last weekend I achieved. I wrote this later that day.

I had a plan in my head for the morning I knew would be a struggle.  Firstly because it meant getting up, secondly because it involved some small physical exertion. 
In essence boxes into car, drive to car park, unload car, sell stuff, drive home.  2 hours tops.  Simple. 
In practice I mentally shoved my incredible fatigue to the back of my mind behind a cupboard, then grabbed the incipient pain and closed the door on it before it started showing off too. 
By 10.30 am I had been up for an hour, had sold most of my stuff and was begging myself for Tramadol (This is a mental battle I’ll go into another day).
I was determined to have a “normal” today, so I pushed on, met a friend for a drink at lunchtime then hit my local for one of their fabulous roasts.  This is where it really went wrong. 
I nearly cried as I struggled to cut up my food, my hands were agony. It ruined most of my enjoyment but I was there, I struggled on.  I wanted the tramadol more and more but I won’t take them and drive, so the pain crept on.
 By the time I got home I was ready to collapse, but some inner stubborn demon made me unload the bits from the car, empty the cat litter and put the rubbish out. 

OK.  Hands up, seriously rookie mistake day.  I am now in pain everywhere.  Joints throbbing and burning, hands on fire, muscles aching and screaming, and my lower lumbar is beating it’s own tattoo. 

So down go the tramadol (finally).  And as I lay here waiting for relief and monitor which body part is screaming loudest I am pondering this… I actually feel quite positive.  Despite the agony (no exaggeration) some small part of my brain is happy.  Satisfied.  It’s actually jumping up and down and yelling FURA!

My worry is that this is not a healthy ‘high’.  It’s great that I feel achievement, but it really sucks that the only way I can do that is by literally ignoring every pain receptor in my body until it screams stop.  I suspect my good mood will drop as the pain increases now I’ve stopped moving. 

My mental health is as important as my physical, feeling well is a holistic challenge and must be treated as such.  I guess my lesson from today is pace and limits.  I suspect my poor body will remind me of this incessantly for a while. 

Why me?

The first question has to be why. Why start to blog, why me, why RA, why now? And dammit now I’ve asked I have to answer.  This requires a little self analysis, but it’s my blog, indulge me a little?

The why’s are actually all one question, and the answer is Rheumatoid Arthritis. Diagnosis day Tuesday 10th March 2015. It feels like that should be bigger, maybe with banners and fireworks, though not necessarily pretty ones. Very much a D-Day.  More on that later perhaps.

I started having obvious symptoms around six months ago, and my standard method of processing things is to write. I will think them over, but will then start making notes, run them past friends, whether in person, online, by text etc, I read, I investigate, I gain some comprehension, then I process by writing. Or typing. Semantics. In it’s essence writing down my thoughts is my filing process.

I have been very fortunate to have discovered a couple of great groups on facebook who have not only put up with my sometimes very wordy posts but made me feel welcome, and validated.

And that leads me to here. RA is a demon. Make no mistake, it’ll enter your life oh so quietly, and then overnight it becomes your every waking thought.  It provides pain and aches and stiffness and inflammation and itching and pins and needles and that’s before you get started on the medication. But above all it brings what has currently become my nemesis, fatigue.  And this is where validation has been a literal lifeline – the fatigue has had me on the floor, and without the online RA community I would have felt as if I was going mad. It leaves you feeling so isolated and alone, as if no-one understands. Except they do. Those beautiful fellow RA’ers, they get it, in spades.

So, blogging. I’ve attached a wordcloud of my brainstorm when I was thinking of doing this blog, key for me is having somewhere to connect, hopefully inform and share, occasionally (or maybe more often) vent, but mainly to remove the isolation.  I know I am not the only “single rheum” out here, and my hope is this blog will become a virtual room where connections can be made, or sometimes just validation sought.

We are NOT alone.

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