Poem – Count

When the pain is so bad and you’re wanting to die, count the good stuff. 
When your heartbeat betrays you by beating on regardless, when your breath keeps on coming in between sobs of pain, count the good stuff.
When the view is so bleak and the clouds are so black, when the rain and the cold and the pain knock you down, when you feel like a long distant shore may be home, because being pain free would beat being alone, count the good stuff. 
When the tablets are calling and sleep is your friend, count the good stuff. 
When the night is too long and the days never ending, when the bottle’s a friend and it doesn’t judge.  When the bitter black anger screams this isn’t fair, this isn’t my life, I didn’t chose here.  Count the good stuff. 
In the worst of your pain you’re never truly alone, that’s the good stuff. 
When you’re angry and wanting to scream at the day, when your damned limbs betray you and get in your way, when the pain is a physical beast that you fight, that tears it’s way inside your head deep at night, it’s the love that clings on and gives strength to your fight – that’s the good stuff. 

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The Black Dog & RA

Depression. Even the word is dark.  For me it conjours up images of rain and grey skies, stormy seas and windswept moorlands, barren landscapes with stunted trees. 

If only depression was that simple, had that Heathcliffian black and white glamour.  In reality it’s days of deliberate isolation, it’s curling up because you want the world to go away.  It’s knowing if one more person asks how you are you’re going to start screaming and never stop  so it’s better to turn off the phone. 

There are no definitive numbers available, but it’s thought that around 30% of people with RA suffer from depression.  Cause and effect? Who knows.  There is a new school of thought suggesting inflammation may be linked with depression, it’s certainly linked to RA. 

It’s pretty obvious that combining a life changing diagnosis of RA with days of fatigue and constant pain are a trigger for low mood.  Then you hit the old catch 22, studies have shown that people suffering from depression feel pain more.  And so it goes round. 

Sometimes the cause is irrelevant, the why is unimportant.  It’s the living with that we need to focus on.  ‘Why’ will drive you mad.  Those of us with chronic illness do not need an extra why. 

Writing about depression is hard.  I find writing about my RA fairly easy, it’s almost factual, it’s symptoms and pain and drugs and impacts… Whilst obviously personal it doesn’t feel revealing.

Depression feels more like I’m opening a window instead of talking about the facade of the house.

I wanted to touch on this because it’s been a difficult road for me the past few weeks, yet I’ve never been alone.  Thanks to some amazing people I’ve met online, that I now think of as my RA family, we have shared. 

We have shared in the small hours when the pain is visceral and all encompassing.

We have shared the lows of losing activities, friends, relationships and whole careers to this damned disease. 

We have shared the need to sometimes tune out of the world for a time, because one more thing that demands energy will just be too much. 

I’m taking anti depressants, my GP is very supportive.  Nearly every RA sufferer I’ve gotten to know well online is on them too.  I think they are a necessary and vital part of our support system, we have to look at our health holistically, we are in this for the long haul.  Most importantly we should not be ashamed.

I think it’s starting to be recognised by the medical profession, my rheumatologist has a direct referral link to a psychologist to help people deal with diagnosis,  I was offered this last week and accepted with open arms, I see this support as being as important as any other they offer me. 

To anyone who stumbles across this post who even thinks they may be depressed, please reach out.  GP, rheumatologist, nurse, samaritans – there is always someone there, and thankfully these days the stigma surrounding mental illness has diminished dramatically – to the extent I am not ashamed to say I suffer with depression. 

If you’ve not come across the black dog from the WHO on you tube I’ve posted a link here, it’s a useful way of explaining how depression feels. 

Ask & you will receive?!

I may have mentioned before I’m ridiculously independent, sometimes almost stubbornly so.  It would suprise those who don’t know me very well to know that I’m am introvert, because I am perfectly capable of mixing with people I know and enjoying it.

However it has to be balanced with time on my own.  Quite a lot of it.  Even as a child I would distance myself,  finding a quiet corner with a book for cover and taking time to just be.  I’m genuinely happy with my own company, and I feel sympathy for people who aren’t, I can’t imagine always feeling a need to be surrounded by others. 

However this does not mean I don’t enjoy company, and I’m lucky to have a very special and varied group of close girlfriends, and a wider but just as lovely group of social friends. 

I have found myself in the position very recently of starting to need to ask for help, and boy does that grate! But I simply cannot pretend any longer to myself that I can do stuff – I can’t!

To my immense delight and true gratitude I have found when I ask people come through.  They really do. 

A call out on Facebook this week resulted in an old friend I hadn’t seen in 7 or 8 years dropping round within 2 hours to shift a load of boxes for me.  I paid him with a hug.  Seriously, how simply amazing is that?

I have also had boxes dropped off and meals brought round, and I know when I move house in four weeks the help I need will be there.  If there’s one thing RA has done for me in the last few weeks it’s made me truly appreciate the people around me, my support network, my friends.

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Out of Sorts, Out of Spoons

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

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

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

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.