A Day Without Spoons

A day without spoons

When I asked my rheumatologist a few years ago about the fatigue I’d experienced since developing my arthritis, he told me that it wasn’t related. In the new Arthritis Research UK leaflet on PR, it says that fatigue can accompany a flare, but that you are symptom free in between. My own experience, and that of others with PR, does not echo either my rheumatologist’s statement or the Arthritis PR leaflet. Here’s my description of what a day without spoons (energy) is like:

A day without spoons can come without warning. Sometimes it seems understandable — I’d done too much the day before – whatever too much means. But it’s not always as simple as that. If it was as simple as exerting myself too much, not sleeping enough or working too long and too hard, I’d have a day without spoons every two or three days. My morning Zumba classes would be off the menu for good and I’d have to cut down the time spent sat at the computer. But it’s not as simple as that. The spoonless day is as mysterious as the flares that typify my palindromic rheumatism and as variable and unpredictable. It comes out of the blue, often without warning, and then just disappears, just as mysteriously and often as quickly too.

It’s not always clear when I wake up how many spoons I’m going to have. Sometimes I know immediately. My head feels heavy and both mind and body feel as though they’re stuck in the deepest part of sleep even though I know I’m awake. Those are the kinds of days where it can take me two hours to muster up the mental or physical energy to leave my bed. Those are the days when I’m thankful for J who will bring me breakfast without complaint and a coffee to try and chase off the remnants of sleep. By that point, however, I know that it’s pretty much too late for me. There’s no point trying to get out of bed or to plan to do anything. There are no spoons and that’s how it is.

Other days, I don’t realise the scarcity of the spoon situation til I’ve been up a while. It’s sort of like my mind and body are on automatic. I get up and breakfast and have a coffee, and meditate (my general morning routine) and sometimes I even get as far as doing something or leaving the house before I realise I’m not quite right. In fact, I’m far from right. My legs, the ones with the power, muscle and energy to get me from home to town on my bicycle, the legs that are happy to dance for an hour to Zumba with enthusiasm and verve suddenly feel as weak as someone who hasn’t got out of bed for a month. Walking isn’t as easy as putting one foot in front of the other but is a supreme effort, like walking through treacle or heavy mud up to my knees or even my waist (though I’ve no actual first-hand experience of either). It’s like walking at altitude (and that IS something that I have experience of), when it just feels that the oxygen is not getting to the muscles to give them the fuel to work properly.

And then there’s what happens to my brain. Usually pretty quick and alert, I’m suddenly rendered pretty much incapable of forming a sentence or making a decision. I can spend ages searching for the right word, trying to pull it out of the fog clouding my memory and eventually give up as the searching is using spoons I do not have. Justin will ask me a simple question – such as whether I want a drink or what might I want to eat. I understand the question but I cannot seem to access an answer. Deciding or working out what I might want, again, uses spoons I simply do not have. I honestly do not know. Coffee is nice. I enjoy the taste, but it doesn’t give me spoons I don’t have. Often these symptoms are accompanied by a sore throat, though it isn’t always the case.

Having no spoons is like having flu. Getting out of bed to go to the toilet is an effort. I feel light headed and weak and it takes me a while to recover from the short walk from room to room. The fatigue is so overwhelming that it, in itself, is almost painful. Thinking takes spoons. Sometimes, sitting up takes spoons. I just want to close my eyes and sleep, but I know that sleep won’t restore spoons when there are none to be had that day.

On a spoonless day I know that there is nothing for it than to give in and be ‘ill’. There’s no point forcing anything or wishing it was any different. Some days are just like that. Then I’ll go to sleep at the end of the day, sleep a full night and wake up the morning. “Are they back!?” I will wonder to myself. Standing up, I realise that I have not come down with a flu or got a virus. The sore throat is gone and I feel completely normal.

My spoons are back to ‘normal’ levels again. It’s not even a partial return of spoons, but I’ve got the full complement again . My muscles have enough oxygen to work properly and my brain knows how to find the words it needs to form a sentence. The difference for me between a no spoons day and another day is pretty dramatic. And, unlike a flu or an actual virus, there is no recovery period. It’s as if the day before had never happened, and I’m back to normal again.

Thankfully the days without any spoons AT ALL aren’t that common. And they don’t always tie in with a flare– in fact, they very rarely do. There is often no flare, pain or inflammation at all. But they are part of my PR, and part of the experience of lots of others with this weird and mysterious illness. They need to be taken seriously by the medical profession as one of the symptoms of PR and need to be understood by others that it’s not just like feeling a bit tired or worn out. It’s more than that. Much more.

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22 responses to “A Day Without Spoons

  1. Thanks for your story on having no energy. I have pr and over the past year this has been a problem for me. I generally have flare ups about every 2 months that last from 3 to 8 days. On the real bad ones I cant sleep so its no mystery why it takes 1 to 2 weeks to get my spoons back. But even during dormant times I find myself with no spoons on any givin day. I live in the US ,and I dont think we are as up to date on pr as you in the UK, we definitly dont have any research that I have found, I just wish I had the means to come to the UK to take part in some of the studys there. Agian thanks for your stories , it keeps me from thinking I crazy with the things I experiance with pr when nobody has any idea what it is or has even heard of it. I guess what I find most desturbing is most doctors that ive encountered have never even heard of it. WOW!

  2. You described so well my every-morning… like wading through treacle. Thankfully things have usually improved by midday for me and then I have my ‘window of opportunity’ to do stuff in whatever is left of the day.

  3. How true this is! You have just described how I can feel. I have psoriasis arthritis and the fatigue is unreal.
    People, including nurses & doctors look at me stupid as I try to describe how I’ve been.
    I went to a rheumi assessment Tues-a good day-no visible swelling, inflammatory markers Ok. Yet there I was trying to explain that the day before I couldn’t get out of bed and indeed at least two days a week are spent in bed! Ive started taking photos of my swollen hands and feet which come up so quickly I can actually watch it! What I can’t capture is the burning pain and feeling of being completely lifeless!
    I think I’ll show them this next time. So eloquently put! Thank you!

    • Thanks for commenting. Really liked you liked the blog. I think people really don’t get how the fatigue is all encompassing when it strikes. It’s not like feeling a bit tired. Sometimes I’m tired, yes, and that’s something that many people share, whether or not they have arthritis, but this fatigue is truly something else entirely.

  4. Hilary De La Ceaux

    Thankyou from the bottom of my heart for this. I was diagnosed with PR some 13 years ago and have to say this is the first time i have seen info and blogs on here about the condition. I can relate to all of what i have read. I have printed this off to show family & friends in the hope it may help them to understand better my illness. I can be suffering pain/fatigue ( the worst to bare), and the inflammatory markers will show as clear. Most days start with difficulty but this can change throughout each day and from day to day. Sometimes i am housebound. I try my best not to let it beat me but after a day of having a go, as i have done today, tomorrow will need to be a day of rest. There seems to be little info about this illness. i was given a basic leaflet when i was diagnosed. my Rheumi called it The “Travelling Arthritis” because it moves around the body. I would very much like to keep intouch with others who live with PR. Perhaps we can support eachother.

    • Hi Hilary,
      Thanks for taking the time to comment on the blog and I’m really glad that you’ve found it useful. I had never met anyone with PR when I got diagnosed and it definitely helps to know that I’m sharing this weird and unpleasant illness with others – though I wish that none of us had to suffer! If you want to connect with others living with PR, the facebook group is very supportive, with lots of people asking and answering questions and sometimes just posting for a moan. There are nearly 300 members in the group now and it’s just called The Palindromic Rheumatism Group.
      I hope that a day of rest restores you a little.
      Ruth

      • Hilary De La Ceaux

        Oh thankyou Ruth. I will certainly look at the FB group. I took myself for a day out yesterday to get out of the house so today is a recovery day at home. I hope to do some painting this afternoon to help me relax and take my mind off pain. Very tired but tomorrow is another day. x

  5. Hilary De La Ceaux

    Does anyone else experience very sore, dry eyes. i was recently referred to the eye hospital who have prescribed me drops. Before i was diagnosed with PR i had a sudden onset of IRITIS which docs told me was often a symptom of Arthritis.

    • no problems with eyes except I noticed my eyes get puffy prior to a flare up

    • Yes I have psoriatic. Arthritis which is autoimmune and and inflammatory arthritis.
      In Dec 2008 I had a very sore red eye and thought it was from poking myself in it-even though I didn’t remember doing that.
      I went to the optician who asked how quickly I could get to hospital. Apparently it was euvitis and as I’d left it a while, was told it could “pop” at any time!
      Given a course of steroids for a month and the eye clinics emergency number. A month later I went back-this time iritis is both eyes. Same treatment but longer. I went on to have 5 bouts in 18months. They said it was unusual to have so many flares in such a short time and there must be Inflammation somewhere in my body.

      No tests done though.

      In 2010 I was diagnosed with psoriasis and eventually with psoriatic arthritis in 2011-finally the “inflammation in my body” was found!
      Finally an answer to why I couldn’t even get out of bed/lift my arms or legs/shower/pull my pants on & so much pain.
      The only reason they diagnosed it was because I paid privately as my shoulders were so bad. I had spurs and bursitis then I was sent to a rheumi!
      Chronic fatique, painful joints, sore red eyes, flashing like broken glass in eyes, sensitivity to light, psoriasis,nail psoriasis then Psa (psoriatic Arthritis)

      My rheumi told me I had inflammatory arthritis just be looking at my nails hands and joints. I then had mri scans-thank god I paid private and kept on insisting things wasn’t right.

      Now I’m on biological drugs with
      my methotrexate, due to the expense other drugs have been tried first.I tried Sulfadalizine

      I’ve failed Humira and will shortly try diffrent biological injections.

      Although we have a different arthritis-it seems many symptoms are similar.
      For me, the charity Arthritis care, have been fantastic with help, advice and counselling.
      Please keep sharing your experiences as it helps so much.

      • Hi Debramich,
        I have a close friend who has Psoriatic arthritis so I can empathise with you. I also was diagnosed through the private system as the NHS lost my GP’s referral letter. I waited almost a year to hear from them so was very angry at the time. Without a diagnosis my employers at the time were putting me under a lot of pressure about my sickness record. The Rheumi I have to this day, now back on the NHS is the same one I saw privately.
        I have recently heard about Humira from a lady I know who went on a trial. Is it available on NHS?
        I to have Bursitis and Tendonitis and sometimes require Steroid injections, although I understand it is best to keep these to a minimum so I try not to have them too often. I have been taught some physio exercises to help when Tendonitis flares.
        I have recently been in contact with Arthritis care and received some leaflets from the. I looked for a local support group but thee only one available in my area was for elderly folk.

    • I have never had much of a problem with dry eyes but I do know that it can be related to RA so it makes sense that it might be something that some PR people get too.

  6. I have a different kind of arthritis, but bad as the pain can be, the fatigue is the worst symptom. I seem to have fewer and fewer spoons each year. I developed a stress condition 3 years ago, which saps energy on top of the pathetic levels I had before, but this new year I have been looking back on how I was 2 years ago (when I had a lot less energy than 2 years before that) and realising I seem to have less energy now than then. I wish I knew a way to get it back! Annoyingly, exercise seems to be the best way to get more energy, but I never have enough energy to do that! Quite apart from the rusty knees etc 😦

    I’ve written a poem about how I feel on a spoonless day, it’s on my blog if anyone wants to read it. I didn’t want to put it here and clog up your comments. I hope it doesn’t seem spammy to link to it, sorry.
    http://knotrune.wordpress.com/2014/01/23/void-poem/

    • Thanks so much for taking the time to comment and to point me to your poem about a spoonless day. It’s brilliant and describes what it’s like very vividly. thanks – not spammy to link to it at all. 🙂 I agree that (mostly) exercise gives me energy. I get around the not having enough energy to do exercise by doing mine first thing in the morning before I get too sluggish or lazy. It seems to work most of the time. The will is a lot stronger then too.

  7. Since eye problems have been mentioned here I’d just like to urge everyone to have regular (annual) eye checks because you may have a problem and be totally unaware as I was forty-odd years ago. After several operations I eventually lost sight in one eye but I have managed well enough without it for the past twenty-odd years. In those days the link wasn’t known about but in theory it is now and should be closely monitored.

  8. So true. My big bouts of no spoons rarely run with a flare, although days without spoons run closer together when going through a flare, but with drug treatment they soon disappear. I remember when I was first diagnosed 8 years ago, no one told me about no spoons. I used to eat bags and bags of sweets to try and get my energy up- terrible I know, but the then immature 18 year old had no idea!
    Hope you’re well at the moment x x

  9. Pingback: Body confidence | My Palindromic Life

  10. Vert well written. As a newly diagnosed PR member, I am finding I can finally relate to others and it is not in my head…….my hand swelling (or what ever), accompanying pain and struggle to keep going during those days is real. Now it is scary. Getting used to this being something is now another hurdle. The fatigue is so annoying. lol

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