Category Archives: Spoon Theory

November News

It’s been a while since I last wrote, and happily, the summer flares that plagued me throughout July and August have subsided, and I’ve had a pretty calm Autumn.

Just after I wrote my last post, I saw a rheumatologist who ordered a whole raft of blood tests – five vials full! I got the results through my GP surgery, but they couldn’t make head nor tail of them as they hadn’t ordered them (!). My vitamin D levels seem pretty low – which given I take supplements AND I had been outdoors a lot in the summer, seems worrying to me. Neither the GP nor the rheumatologist thought it was worth taking any action on. Other levels are mostly normal, except for one marker that the rheumatologist said was consistent with inflammatory arthritis. Clearly, if he isn’t worried, then I shouldn’t be.

The main thing that came out of that appointment was a diagnosis of something new. Fibromyalgia. It was quite upsetting at first – getting a label of another chronic condition on top of the one I already have. Particularly as Fibromyalgia appears to be little understood and some medical professionals don’t even believe in it. But as my mum said, I’m already living with the symptoms, so getting the diagnosis shouldn’t really make much difference, particularly as there aren’t really any decent treatment options that seem to be appropriate for me.

The diagnosis has helped in some ways. It explains why my neck and back can be incredibly painful, despite the amount of physio I’ve had, and regular pilates and yoga that I do. It also explains why, when I don’t do any exercise, I feel like I have fewer spoons (and less energy) than when I do. My funny symptoms – the ones like my skin feeling sunburned or super sensitive, could also be down to fibro. So it’s good to finally get an explanation for that.

Since my last blog, I’ve had gluten twice. Both were small amounts and on both occasions, I was convinced that it would be fine, and it was too little to make a difference. After the first time, I had a three day flare that was pretty bad and painful – more so than anything I’d had for a long while. The day after the second occasion, I felt totally out of spoons and full of brain fog.

Coincidence or caused by the gluten? It’s difficult to know, but both incidences are enough to persuade me that it’s worth staying off gluten. I do feel as if I have more energy without it and I’m still eating healthier.

Since September, I’ve also been doing a daily morning yoga practice (just 15 minutes if I’m short of time, 30 if I’m not) on top of my meditation. The yoga is helping with general stiffness and pain, and is good for my energy levels too. It’s the first thing I do when I wake up, and it’s a great way to start the day. I’ve got a bunch of asanas that I like, but before I felt confident in self-practice, I used some online videos, including some from a website called Do Yoga With Me and the  30-day yoga challenge by Erin Motz

As far as my diet goes, I’ve got even stricter with what I eat and don’t eat. So, as well as totally avoiding gluten, I’m mostly avoiding dairy (mainly having goat’s or sheep’s dairy if I’m going to have any), still largely avoiding refined sugar, – (refined anything actually), avoiding additives and processed food and making as much food from scratch as I can. I don’t eat meat – but that’s not a new thing.

I’ve mainly been following recipes from Honestly Healthy  which recommends an ‘alkaline’ diet (which I guess is what I’m following). I have two Honestly Healthy cookbooks, which are great. I’ve also got a few nice recipes from Deliciously Ella.  Both are good sources of vegetarian, dairy free, gluten and sugar free recipes.

I also went back on a detox retreat, run by Olive in Spain. It was the second time I’d been and was as wonderful as the first time, which I reviewed for Queen of Retreats. I came back bouncing with energy (as I had done the time before).

The retreat reinforced the path I’m currently taking, and so I want to be as disciplined as possible, as far as I can. Hence the ‘mostly’ and the ‘largely’ when it comes to dairy and sugar. It goes without saying that I’m not drinking a lot of alcohol, and I’ve even cut down on coffee. So far, I’m pretty positive. I still get flares but they seem to be shorter lived, and I’m still having long periods of no pain (two weeks and counting currently).  My energy remains pretty good overall too.

The biggest challenge to the whole diet thing remains (as it was in August), eating out. That, and occasions where everyone brings in cake that I can’t eat.  This means that I imagine that the upcoming festive season is going to pose the biggest challenge yet. But I plan on making lots of lovely GF/Vegan/sugar free treats so that I don’t feel too left out.

If you want to know more about the types of food I’m cooking and eating, you can follow me on Instagram where I’ll post occasional photos.

Thanks for reading. : )

Some of the delicious meals served at Olive Retreat

Some of the delicious meals served at Olive Retreat

desserts at Olive Retreat - all sugar, gluten and dairy free.

Desserts at Olive Retreat: Sugar, gluten, dairy free.

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.

Tired of being tired

Again, another two weeks have passed since I last wrote.  Flare-ups have been few and far between – mild or short-lived.  However, my energy levels have varied from having bags of energy to feeling as if I have none at all.

Most days, I’ve found that I have the energy for SOMETHING, which is good, because I’ve had a lot of work on. However, by about 4 or 5, I’m often absolutely spent and, on some days, even having a conversation feels like a complicated thing to do! My eyes, meanwhile, feel so tired that keeping them open feels like a supreme effort.

One of my current projects is to lead a course for women on building their self-esteem and improve their job application (and interview) skills. It’s quite a cycle there (40 minutes each way), plus then I have to lead a two-hour workshop. It’s great work – very rewarding – but I am usually pretty stressed about it beforehand, put a lot into it during the course and then crash as soon as I get home. So, just two hours of paid work, takes an entire day worth of energy. Having expected that, I don’t tend to make plans for those afternoons. Still, it’s a drag.

I’m also getting really BORED of feeling this way. I accept it as part-and-parcel of how I choose to live my life. But I’m bored of it. I’m tired of being tired. I don’t want to end up giving up everything in order to conserve energy. What would be the point of that? At least this way I still have a life and still do things that I enjoy or that are rewarding (even if they are stressful too). Yet, I’m tired of answering “tired” whenever anyone asks how I am. And tired of my internal dialogue going “I’m so tired”.

This particular run of tiredness (it’s not quite as bad as fatigue and a total lack of spoons – at least I have SOME), coincided with me stopping taking my St John’s Wort supplements (which I was taking for depression). I’d felt so much happier that I thought perhaps it was time to stop. But, just in case the two are linked, I’ve decided to start taking them again to see if the energy picks up a bit. So, along with the hydroxy, the doxy, the calcium & D supplements and the glucosamine, the St John’s Wort is back on the morning menu again as from this week.

I’d be interested in hearing what other people have found improves their energy or fatigue.

Energy report

It’s amazing how much difference a little bit of energy can make

On Sunday, I was really low on spoons. I had a walk round the park with a mate, and then went to the local shop to do some food shopping. It didn’t take long, and I didn’t buy a lot, and it isn’t even that far from my house, but it totally and utterly finished me off for the day. It was so bad that I couldn’t even make it from the front door to the kitchen to empty my bags, I just sat on the stairs and sort of cried! By 2pm, I was back in bed, having spent all my spoons for that day. It was Sunday and I didn’t have much to do, so I resigned myself to being low on energy and just watched DVDs and chilled out.

Monday and Tuesday have been a totally different story. BOTH days, I have returned home from a full day at work (which for me, is around between 4 to 6 hours) and actually had enough energy to go into the kitchen and COOK! It really is incredible to me how different it can be. Sometimes the thought of cooking seems so overwhelming  – even a simple dish like soup which requires very little effort. And yet today and yesterday, it was nothing at all to chop up some vegetables, add them to a pan and whip up an amazing dish – even if I say so myself! Yesterday’s was broccoli & cashew nut soup, today is a stew with mushrooms, spinach and butter beans. And yet other days, those five hours at work would have used up all my spoons. So that means today I have been to Zumba, cycled to the office, done nearly 5 hours of pretty intense research, cycled home AND cooked. No pain, and a level of tiredness that would be expected for a normal person. Amazing.

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How many spoons will I have today?

The spoons in question are an analogy for available energy. If you haven’t read spoon theory, it was developed by a woman with lupus who was trying to explain to a friend what it was like to live with a disability/illness. She used the spoons to help her explain that for many people – especially young people – spoons (energy) were limitless. However, for people living with illness or disability, there are only a limited number of spoons (energy) available to them each day, meaning that careful choices need to be made.

As she says: “the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

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