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:




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?!!


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.