Warning: this is kind of a long one.
A few things to witter on about today: some good, some not so good.
Starting with one of the good things: GUESS WHAT I AM EATING NOW!
I went and saw my nutritionist yesterday (among other people) and calmly and rationally put forward my opinion that I was ready to start reintroducing foods into my diet.
She did the temple thing with her fingers and had a think about it. ‘I don’t know,’ she mused. ‘I wonder if you’d do better if you just manage a few more weeks on the strict diet …?’
I swear, I became tearful on the spot. She must have seen my desperation, because we agreed (one eagerly and one reluctantly) that I could give eggs a go for the next few weeks.
‘But be careful,’ she warned. ‘Don’t rush into it and be sure to pay attention to all the little changes.’
I made lots of yup-yup-yup noises and raced home to have my first soft-boiled googie egg for six weeks.
And it was amazing.
Please place your hand against the screen for an internet high-five with Darling cockatoo.
Eggs is all I can try out for the next two or three weeks, because it can take that long to get an autoimmune response. After that, I am going to push pretty hard to try legumes. I tried for cultured dairy, but she seemed fairly unconvinced. But with eggs and legumes, assuming I can tolerate them *, I can at least create some decent non-meat meals.
Another lovely thing is that I went to visit a sister and niece today. It was lovely to see them. My sister had painted her fence a lovely shade of blue. Their pet birds were flying around. I brought over some cookies and some flavours of Adore Tea to taste.
The cookies, by the way, are the result of me being desperately hungry, longing for a snack that isn’t either bloody meat or a piece of fruit, and having a great desire for something filling to have with my tea.
I got the recipe from one of those super-mega-crunchy-worthy lifestyle websites that I can hardly bear to think about; but Professor Google seemed to think it would fit the bill.
They contain significant amounts of coconut. However, I have discovered that my main issue is with coconut oil and coconut milk. I appear to manage ‘desecrated’ coconut and coconut flour much better.
Apart from coconutty products, they contain a small amount of honey (now acceptable in little doses on AIP), a little bit of fruit, eggs or an egg-substitute and vanilla. The egg-free version looks pretty useful because if you use maple syrup or similar, it could be vegan, and it’s gluten-free.
I actually made two versions: egg-free, and eggy.
They keep well so I’ve stocked up.
Those on the left are egg-free (I used arrowroot instead) and contain sultanas. Those on the right are eggy (and use coarser ‘desecrated’ coconut), and contain fresh blueberries. I think they’re slightly nicer.
I had been a bit worried about them when I was cooking them, because all the coconuttyness made them look and smell an awful lot like a confection called ‘White Christmas‘ which definitely should be consumed in small, careful quantities, and not handed over wholesale to small children unless you are prepared to deal with the rather messy consequences. The Captain still can’t bear to think about the stuff. ***
Happily, when cooked these beauties taste a lot more like macaroons ****, and they are really quite nice. And my gut tolerates them. So all is well.
When I arrived at my sister’s, I was a bit fragile and tearful. This is the natural downer I always have after seeing a number of medical practitioners one after the other.
As I think I’ve observed before, each medic sees only what their background allows them to see. And they frequently hold very different opinions to each other. This tends to leave me feeling highly scrutinised, confused, and a bit defensive due to having to convince people who can’t work out why I’m in so much pain that I’m actually doing the things they tell me to do.
One of the people I saw yesterday flatly refused to believe that I have a hardwired persistent pain problem. They insisted that the only thing between me and a completely pain-free back is that I’m ‘extremely unfit’. That was quite a blow, because I haven’t exactly been sitting on my arse doing nothing for the past few months – and other medics had been congratulating me on my increasing fitness.
After I left the appointment, I couldn’t help but wonder what, if anything, all the exercises and stretches and walking and yoga and stuff I’ve been doing, have achieved. My back, when I sit for too long or stand for too long, is just as bad as ever.
Don’t get me wrong: I enjoy exercise and I want to be getting fitter because it it pleasant to be fit and I’m sure it will help me in many ways. I just wonder if, in order to be free of pain, I have to – as this person suggested – be able to do a ’15 km mountain-bike ride’ or a full-day bushwalk (which I insisted I am in fact able to do right now. And the medic said, ‘No you can’t’. And I said ‘Yes I can’. And they clearly did not believe me. *****
Putting aside the fact that this is now twice that this person has insisted that I will not be able to do something that I know I can do, I am concerned at the idea that before some people will believe that I am doing my best to be healthy, I will have to be a pretty darn good athlete. It was my long-term plan to maintain a moderate-to-good fitness level and live a serene sort of life: not have to turn myself into a weekend athlete. I like exercise but I don’t want it to become the single most important thing in my life.
Between you and me: I think even if I did that, there would be people who wouldn’t believe me. Mainly because I’m fat.
I have – in fact – lost a bit of weight on this diet. It’s not something I’m happy about – and for god’s sake please don’t comment enthusiastically on it if you see me. I do not enjoy people telling me that I ‘look great’ because of the results of a combination of raw pain and starvation. When you tell somebody they look good because they have lost weight, what you are actually telling them is that they looked bad beforehand. And believe me, I remember all of those comments, and tend to pull them out and go over and over and over them in agony late at night.
There is a very great deal more I would like to say about this topic but for the time being let me summarise it thus:
- It sucks that to most people, less weight = more health. Even when it is caused by bad, unhealthy things.
- Doctors fall for this one the same way any other human does. The fact that I’ve lost a small amount of weight does not, sadly, translate into less pain. It may well carry other little health benefits, but right now it’s pain that is affecting my whole life. (And I suspect I can get equal benefits out of things like avoiding processed foods, staying fit-ish and cleaning my teeth properly.)
- And the fact that I’m still fat, and statistically likely to be so for the rest of my life, does not translate to me being unfit. It is possible to be fat and very fit indeed. And healthy!
- Our social currency should not be defined by the appearance of our bodies. My feminist soul is deeply offended by the idea that people are thrilled by me taking up less space.
The experience I had yesterday with this medic reminded me that, in order to be seen as doing my part towards my own health, every aspect of my life will be under close scrutiny. My diet, my medication, my general demeanour, my mental health, my personal history, my weight, my fitness and my hobbies – these have all already formed a major part of how my flotilla of medics (squadron of medics? sleeplessness of medics?) have assessed me and – yes, judged me so far.
And whatever I do for one person may be the wrong thing for the next. This is the main reason I asked for a referral to the pain specialist (that, and I was sick of people prescribing panadol for level 8 pain). Just to have one person who I can trust to believe me, and who can keep an eye on the rest.
If I try to get back to work and find that it’s just as bad as before, people will be looking very closely at me to see if they can work out what went wrong. And they will be doing it with the very best of intentions, but I will feel like a lab rat. ****** And some people will look at me and say, well she’s not fit enough and she’s still fat and she probably hasn’t been doing her exercises and maybe she just isn’t committed. Because that is, sadly, what humans sometimes do.
As for the person who thinks I’m in pain because I’m not as fit as they want, perhaps they’re right. I will get fitter (to the best of my genuine ability and within the capacity of my sanity, thanks very much) and see what happens. However, I’m disturbed by their insistence that I’m not able to do stuff I know I can do – and by the arguing with me about it. I have really, really liked this person for years. Is the relationship over? Should I find somebody else? Or should I persist and clock it up to the fact that they are clearly hugely flummoxed by not having been able to shift the pain yet? Answers on a postcard please.
Anyhoo, there I was at my sister’s, and I blurted this all out (actually, she was so 100% with me on it all, that she blurted half of it out to me. I love my family).
And having them being so understanding, and the birds and the cookies and all the laughter and all, cheered me right up. And then – my sister sat down with me and taught me something I have been longing to learn for AGES. How to crochet a granny square!
She was a fantastic teacher too (well, she is a professional). I have been longing to know how to do it because a) I love love love granny squares, especially when they really badly clash, and b) crochet is easier on arthritic fingers than knitting. I hope I end up better at it than knitting. *******
Look: here is my first ever granny square!
It’s kind of a misshapen Frankensquare because I changed hooks partway through, and it’s way more tasteful than I intend to make in future, and the flower in the middle was crocheted by my sister.
I promised myself when I left work that I’d try to achieve at least one thing every day, and now I have. It has been a good day.
On my way home from my sister’s, I commented on her lovely new blue fence. The soft, mid-blue, she said, was called ‘Boat Shed Blue’.
How appropriate. The Captain sometimes talks about ‘painting the boat shed’. You see, sometimes it’s your job to paint the boat shed. You know how to do it, and you’ve picked the colour.
But the thing about painting boat sheds is that anybody could do it. Everybody knows how, and they know exactly which colour it should be. And they are mad keen to let you know all about how to go about painting that boat shed, and give you advice on the correct colour. And they all have different advice.
Everybody knows how to paint the boat shed. But it’s your boat shed.
Boat Shed Blue? Why would you paint it Boat Shed Blue? Everybody knows that colour is only for fences!
Your health is your boat shed. Sometimes you need to get some advice from the experts in how to paint it, or how to fix it when it’s broken. And everybody knows exactly how to do it.
If you’re going to pay an expert, you need to give them your attention, and give a professional the courtesy of listening to them and considering their advice. It is madness not to.
But if you’re a Spoonie, and have more and more people giving advice on how to paint your boat shed, you’re logically going to get to the point where you have multiple people clamouring to get you to use their paint mix, and if you don’t, there is a pretty good chance somebody is going to judge you badly for it.
Today I realised, when I looked at the Boat Shed Blue fence, that my health is MY sodding boat shed, and the main person who gets an input is ME. I just have to keep a clear head, sift through all the advice, and decide what my personal ultimate goal is. Then try my best to reach that goal, in spite of the fact that I might well make a few mistakes along the way. And regardless of the fact that my own goal might be different from other peoples’.
By the way, I love my sister’s fence. I think she made exactly the right choice.
* Confession: I have already decided I can tolerate eggs. This isn’t as gung-ho as it sounds: I’ve have several occasions in the past to learn that I can digest eggs fairly easily. But frankly, I’ve been so desperate for a non-meat meal base, that even if they land me in hospital **, I’m likely to tell the nutritionist they’re fine.
** They won’t land me in hospital.
*** Copha has a lot to answer for.
**** NOT to be mistaken for ‘macaron‘. As somebody once observed, the macaron is created by skilled artisan pastrychefs using rainbows and the breath of baby unicorns, whereas macaroons are made of dessicated coconut by your granny.
***** At the worst of my pain, the Captain and I went to New Zealand, where we spend many days doing long walks, and not wussy ones without any hills or scrambly bits, either. It hurt like hell but I did it because it was also fun.
****** A really glamorous, stylish lab rat, thank you.
******* Spoiler: I’m a really crap knitter.