Out of Sorts, Out of Spoons

Posted on by SingleRheum

I don’t know where to start this evening, I just feel a need to write. A lovely old fashioned expression comes to mind, “I’m feeling out of sorts”.  It just seems to fit.  I feel restless and fidgety and fed up and exhausted all at once.  Plus it’s 3am.  3am is always introspective time, ask anyone who doesn’t sleep well!

If I lay it out the last two months look like this – Rheumatoid Disease diagnosis, chemotherapy drugs & steroids, chronic fatigue, pain & inflammation, painsomnia,  too ill to work, no income, depression & anxiety recurring.  Add in homeless in 5 weeks and that about covers it. 

I guess if there’s a time in my life to feel out of sorts now is it.  The biggest frustration is I’m a fighter, always have been, I fix things.  And I just don’t have the energy.  I spent yesterday packing up boxes ready to move at a very slow and steady pace.  Then I lost 80% of today to sleep because I was so exhausted.  That’s what this does,  and it’s the hardest part of this illness for me to accept. 

I totally understand the spoon theory, I have a limited amount of energy per day, and once I use it it’s gone.  Period.  If I push myself I steal spoons from the next day. 

I’m just finding it really difficult to accept how low my daily ration of spoons is, and how quickly they become used.  I packed 7 boxes of books (yes I have a lot, no I can’t get rid of them!).  That would have been an hours work last time I moved, instead it took me 5 hours with breaks.  And it seems that was still too much. 

I commented as part of a discussion recently that the existing spoon theory felt right to me, but the energy used for tasks felt wrong,  for example a days work as 3 spoons and prepping a meal as 2 spoons – this doesn’t equate for me at all.  Someone suggested I write up my own spoon chart, perhaps I should make that my task for tomorrow.  Along with maybe 3 boxes of packing!

I think more importantly tomorrow I need to use some time to work out three things.  What needs doing, what I can realistically do by myself and what I will need help with.  I have to start accepting I can’t do it on my own, and that means asking for help, bit of an anathema to me!

That more than anything else is probably behind my out of sorts moment, I worry that if I ask too much I will be a nuisance and eventually a burden.  People say “if you need help call me” but do they mean shifting boxes of books from my lounge to my garage? I guess there’s only one way to find out…….

If by any chance you’ve not read the Spoon Theory, the link is below:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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The Tramadol Question

Posted on by SingleRheum

Hurt Blogger asked a question of her Facebook readers today regarding helping doctors to improve their understanding of patients experiencing chronic pain and why patients take opioid relief for chronic pain. 

It did cross my mind that only someone who’s never really needed pain relief could ask the question why!

However (and despite not being in America where things are very different) it is a very relevant question, how to explain it to those who simply don’t have the same reference points?

I have chronic pain from RA.  Because of this and what I’ve learnt over the past few months from fellow sufferers in the US I thank heaven I live in a country where I’m not treated as an addict for legitimately requiring effective pain relief to help me function.  I will state here very clearly I feel that not having access to pain medication seems to be a common reality in the US and one that to me seems totally barbaric. 

Until you’ve lived with chronic pain week  in week out you can have no concept of how physically and psychologically wearing it is. Just how damn tired it makes you. How much you begin to resent your own body, the one thing you can’t run away from. 

Pain that would send a ‘normal’ person to the ER becomes your daily baseline. Your definition of pain changes into something at once more tangible yet harder to explain. Pain becomes your constant companion, your nemesis and your whole reality.  It just is. 

Contrary to what most believe you become more careful about taking pain relief, not less, because of the constant concern that regular use means your body will build up a tolerance and at some point the meds you so desperately need will cease to function.

You wait until your pain becomes ‘really painful’ before reaching for your medication.  You ration your own tablets so only on really bad days you actually take the maximum dose.  You  set yourself mini targets to get through before taking your meds, such as “I’ll just finish the shopping before I take the tablets” in spite of the fact that you’re in bloody agony. 

I have run this past my GP, and she tells me to be kinder to myself, take the tablets, it’s what they’re there for! And part of me knows she’s right, yet still that fear of tolerance lingers, so I wait. 

I am in the wonderful position though, thanks to our NHS, that I can simply ask my GP for a prescription for Tramadol and it’s written.  I suppose if was I using too quickly or something there would be questions, but my GP knows me and knows that I need them.  And for that I am indescribably grateful. 

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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…..