The Loss of Me

Posted on by SingleRheum

The weather is matching my mood this morning.  It’s dark and raining heavily and the wind is howling.  Much like inside my head today.

I occasionally get melancholic, it doesn’t last for long but it was here to greet me when I woke up this morning and it will probably stick around for the day.

I just feel a little overwhelmed.  I know this will pass, that it’s actually part of my mental process, I sometimes deal with things by diving into the sadness then finding the positives as my way out.

I know this has been brought on by RA, and the impact it’s currently having on my life.  It’s fair to say the last time I went through this much of a life change I was getting divorced.  And I wanted that!

What makes this harder is that I’m not feeling in control, RA is.  That’s very hard for me.  In simple terms RA impacts my health; impacts my ability to work; impacts my finances; impacts my accommodation; etc, you get the the picture.

I am currently under notice on my rental home, that makes this very real.  But it’s not about bricks and mortar, it’s about loss and grieving.  It’s very likely RA will impact on the rest of my life, as an independent female that grates a lot.

It has already taken my previous pain free existence, my social life, my enjoyment of silly alcoholic drinks on occasion, smoking (not a bad thing),  my gym membership, my working routine, my enjoyment in driving, and my enjoyment in cooking.  It’s also taken away my ability to employ a cleaner which frankly is a disaster!

Will I overcome these losses? Of course.  I will learn to find alternative things to fill my life, learn hacks to make things like cooking easier, learn to turn the losses into positives and make that climb back to ‘normal’.

But today, today I’m grieving and I’m ok with that.

The Need For Empathy

Posted on by SingleRheum

I was going to write today about decisions, and how RA affects them, but my mind is stuck on an ‘incident’ from this weekend, so this decision has been made for me by RA! I will return to this theme….

I’m starting to feel that maybe I annoyed a higher power this week, perhaps I should sacrifice a small fish or something!

I had a real scare Saturday morning.  It was methotrexate hangover day so I am now used used to feeling somewhat rubbish, but just before 10am I had what I can only describe as a really bad ‘turn’, and thought I was going to lose consciousness.  I actually thought for a moment this is it.  Out of nowhere I was suddenly cold, my stomach was churning,  I was covered in sweat, my head was spinning and both arms were tingling, I really thought I was going to land on the floor.  I lay flat on my back for about half an hour before I felt able to risk sitting up.  Another half hour and I felt back to ‘normal’, whatever that is!

I phoned our NHS helpline whilst I was lying prone, and after advising what had happened they said because of meds I’m on and recent history they wanted a doc to check me over.  I was relieved!

I then tried calling round friends for a lift,  it’s a bank holiday weekend so no one was here –  cue choruses of “Sorry, I’m in…….. Portsmouth/Cornwall/getting a wax”, you probably couldn’t make it up 🙂

I decided I was steady enough to drive myself by this point.  The duty doctor at the local hospital checked my BP, pulse, temperature etc and everything looked good. He in essence said it sounds like I nearly fainted, and it might be the meds but then again we may never know why!?!
If it happens again I’m to lay down immediately to help blood flow to the upper body, and he said to tell my rheumy so she can make a note of it. 

And that was it, notes recorded, case closed.

Except it wasn’t for me.  What for the doc was almost dismissed as a near faint actually frightened the life out of me.  For a moment there it is not an exaggeration to say it crossed my mind I was dying.  OK, in the cold light of day it seems somewhat ridiculous, but it was how I felt at the time.

Does RA make me more aware of my mortality? Yes, without a doubt.  It’s very difficult not to be when you combine the impact of the disease itself with the side effects of the medication used to treat it, statistically I am likely to die younger than a person without RA, that’s not being gloomy, it’s just the truth. 

However, I suspect anyone going through the experience I had would have been terrified, I have never felt that… Odd. 

What I would have liked would have been a little more reassurance from the doctor before I left . Telling me we don’t know what caused this or if it will happen again may be honest, and I want that, but it’s not reassuring! Just a touch of empathy and a smidge of caring would have gone a long way.

I know I have said this before.  I will very likely say it again and again.  And I don’t think that makes me a demanding patient, it makes me human.

I’ll get by with a little help…

Posted on by SingleRheum

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

Posted on by SingleRheum

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

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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Expecting too much?

Posted on by SingleRheum

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

Posted on by SingleRheum

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?

Posted on by SingleRheum

 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.