Facing the Thief that is RA

Posted on by SingleRheum

I have avoided writing about this so far because it feels like a failure, in fact the biggest failure of my life.  But I promised myself when I started this blog it would be honest, in the hope that maybe it could help others, so here goes. 

RA has already stolen so much from me in such a short time,  my dexterity, my mobility, my ability to work currently, the pain free existence I took for granted and the energy to get through each day. 

Unfortunately the thief that is RA is this week taking my home. 

Homelessness (there, I said it) has always been a distant thing that happens to other people.  I donate now and again and I empathise, but it’s not been something that belonged in my world, it could certainly never happen to me.  Oh the arrogance.

I was very fortunate, I grew up in a middle class home, my parents instilled a strong work ethic, and I’ve been employed all of my adult life.  I’ve paid my way,  and over the last few years have enjoyed a good standard of living as I have been successful in my career. I lived from month to month, I wasn’t short, if I wanted things I bought them (within reason – cappuccino, meals out, new lipstick, manicures). Like many people it never occurred to me this could suddenly all fall down.  I had no savings, why would I? I’m single, no family to support, no children to leave things to, life’s too short, enjoy it while you’ve got it right?

Then I started feeling ill.  At first non specific malaise, then full blown RA.  Fast forward six months and I have to admit I just cannot work.  Between the chronic fatigue and the joint pain I was not capable of doing my job and being effective.  And that’s when it all fell down.  Going from a good salary to statutory sick pay overnight is financially devastating.  And I had no cushion. 

One month I could meet my outgoings, the next I couldn’t, very basic math. I’ve accessed benefits, but they unsurprisingly don’t cover the luxury of me as a single person living in a detached 3 bedroom bungalow. A combination of circumstance and timing have led to me having to be out of my rental by 14th June.  It’s really hit me today, I have one week left in my home.

I’ve been trying to source alternative smaller accommodation for weeks, it seems I’ve come up against a shortfall locally in the letting market.  Add to that my need for an apartment with either ground floor or a lift as I am now on crutches because of my hip and it gets difficult.  Throw in my two cats, even more so. 

I have turned down somewhere this week because it was first floor and no pets.  I though seriously about taking it, beggars can’t be choosers right? But then I had a meltdown.  There is just no way the RA thief is stealing my cats too. 

I have spent the last two months at home ill, this has exacerbated my depression so badly additional meds have been added in, and thankfully they are helping.  But my cats are my company, my family and my therapy.  We three are a unit.  For my mental health they do untold good, even the thought of losing them causes immediate anxiety. 

So I go into this last week in my house with a large dose of stress and trepidation.  I literally do not know where I will be sleeping in a weeks time.  But I do know wherever it is, my fur babies will be right there with me.

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Poem – Count

Posted on by SingleRheum

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

Posted on by SingleRheum

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.