getting somewhere

in the days since I last blogged things have been moving along. I’m feeling a bit better – whether this is finally the effects of the medication change in January or just naturally something that is happening I have no idea, but I welcome it. Unfortunately with feeling better comes the tendency to overdo it. I can walk (albeit a little bit like a staggering drunk at times) so therefore I will walk, which has led to a little bit more sleepiness…. it means I sleep better at night, but it also means I feel the need to nap through the day! (and by feel the need I mean, I nod off from time to time). Whatever, I’m just very glad to be moving about more freely and just generally more. I can’t go far but I can go and that is such a massive relief and improvement.

In terms of foodie stuff, I’ve been trying really hard to eat my daily quota according to Dr Wahls but unfortunately the complete and utter lack of appetite I’ve had for almost a year now is making it so difficult, added to the fact that I can’t really taste much anymore means I really am not eating enough. You’d think someone who was overweight would be happy with this but of course, I realise it’s adding to the tiredness (and Nige would say the grumpiness…). I am trying and there are days when I get my 9 cups of veg/fruit in and there are days when I don’t, I’m not eating as much protein as I’m supposed to be, or as much fat but I am eating as much as I am able to manage. We’ve managed liver & heart, both good for you, I’m adding a tsp of dried seaweed (I can’t remember which one but it’s red) and where I remember also some nutritional yeast flakes. So, I’m trying but I’m not eating clean as I should be.

Yesterday I made yuca root calzones – they were delicious and I suppose technically paleo – no grains, no potatoes, no dairy, no legumes but I think they were very cheaty – I’m not sure blended, boiled yuca root rolled out as a pastry is really clean – although there were no dense nut flours which I guess is good. Even Yogi ate half a calzone, loaded high with delicious home cooked roasted chicken and a tomato,basil & onion sauce that I concocted. It was indeed delicious – and for ‘pudding’ we had the same pastry but with an added bit of coconut sugar and loaded with dark chocolate chips! It felt really decadent – I literally only managed a calzone and a small chocolate pastry (ravioli sized) and felt I had eaten plenty – but there was no heavy bulky bloated feeling that can come (and pretty much always does for me) after eating pastry! Making the pastry was a long and laborious task but I think it’ll become easier with practice and to be honest the joy of watching Yogi (and Ed) eating something so healthy with eagerness made the effort involved completely and utterly worth it. The yuca root proved a tough root to blend in the Optimum 9400 but by doing it in smaller batches it actually became relatively easy, it was the ooey gooey stickiness of it all that was probably the hardest thing! Here’s a quick pic Nige took, right by the pile of washing up that resulted…..

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So, I guess that’s it for today. So far, I’ve managed to eat nothing so I’m off to make myself a pineapple, orange & spinach smoothie – which is probably my favourite, unfortunately Yogi still refuses to eat anything with green in it so I’ll be keeping this one completely to myself!

getting well mission part2

Well, we took the plunge and bought a blender – not just any blender but a super dooper Optimum 9400. It seems to be doing a fantastic job of smoothing everything – well almost everything, I’ve had a couple of issues but I think it’s just practice that’s required.

Yogi, has taken to having a smoothie a day. So far, nothing green, no green coloured smoothies, she’s absolutely adamant that she won’t be trying anything green…. She is however perfectly amenable to adding a tablespoon of pea protein, and some flax seed too so she’s improved her intake already. I’ve also snuck some spinach in from time to time, it seems to be quite good at hiding in amongst red/purple berries. I haven’t tried making any hidey cakes yet but that’s because I’ve had a tiring week. Tomorrow I have a child-free day (just as long as their first ever sleep over works out!), I will attempt a beetroot cake then.

I’m doing a bit better, although possibly overdoing it, which means that when I’m not actually doing something I feel ready to drop (and have found myself asleep in the middle of the day/park….) I’ve been trying things out by walking without my crutches if I am only going from the car to somewhere close by and I seem to be doing ok. I don’t think I’ll be climbing any mountains anytime soon but I do feel that something is lifting. I’ve been (for years) looking at different ways to eat to help health, I’ve been paleo before and generally do my best to eat as close to as possible but now, following the Wahls Protocol I’m hoping to make some real, life long changes. I’m not swearing I’m ready to be completely healthy eating, and I’m not expecting a miracle cure but if I don’t try everything I can then I can’t really complain that I’m not improving.

and today I leave you with Bob & Millie

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Get well Mission part 1.

Today has been ok, I’m up and about these days – have been for a month or so, but it’s been starting to wane. I think the poor sleep is the issue here. My plan, to help with my healing is to eat better (again). I’ve been researching and researching and reading and rereading and I think I know what I want for all of us. First off is Yogi, she needs healing before she becomes truly ill, for now she is just weak, and not thriving in the way she should.

Yogi has proven to be very intolerant of both wheat and dairy – although when I say dairy we have established it’s the lactose not the milk protein, which is a good thing as she was really really missing cheese and butter. The biggest problem with her is that since being poorly repeatedly she doesn’t really like food anymore – and she never did like it much anyway. She gets hungry, she really wants to eat but there isn’t anything that appeals to her. She won’t eat pretty much any vegetable anymore – which is a shame as we’ve yet to see a vegetable cause a negative dietary reaction. She’s almost reached the point of no veg at all. She agrees to have things on her plate, i.e. she says yes please I’ll have tomatoes/pineapple/carrots but then when it comes to eating them she’s full up and leaves them. I didn’t realise it was happening until very recently when I finally saw it. The only meat she’ll happily eat is sausages and bacon, chicken she is picky about but manages some mouthfuls. She does like the paleo meatloaf I make and I do manage to sneak mushrooms in there. That is pretty much the sum total of the foods she’ll eat (that are ‘healthy’, she’ll eat crisps and gluten free bread, and cake and soya yoghurts), I have convinced her that she needs some vitamins and so she’s taking a multivitamin and I found a childrens cod liver oil capsule. Unfortunately she can’t swallow the cod liver oil capsule so she chews it. How can a child that thinks beetroot is disgusting chew cod liver oil capsules? I tried one to see how bad it was, and it was bad, she does have a small spoonful of honey afterwards but still…. yuck.

So my newest endeavour is to find ways to disguise the foods that she won’t eat. I only want to disguise them before her first try, with the meatloaf I told her it had mushrooms and onions in it and she hasn’t forgotten but she loves it. Once she has eaten a hidden food a few times I will happily tell her the exact ingredients – when Ed is feeling generous she makes a chocolate mousse using avocados, Yogi knows it’s made with avocado but she eats it because she was convinced of it’s loveliness before she discovered what was in it. One problem I have is that our ancient dying food processor is struggling. It has a tiny motor and just really doesn’t have the ability to do what it needs to do but for now it will have to continue struggling, we do not have the means to replace it yet, unless we replace it with something that isn’t up to what we need it to be up to. I need something that can produce deliciously smooth smoothies that Yogi cannot feel the kale in, smooth chocolate nut butters that have no crunchy bits, perfectly lumpless soup bases full of hidden goodness. Today she ate ‘waffles’, eating the waffles she ate two whole eggs without knowing it. I had to work hard though, first the food processor roughly chopped everything into a weird, lumpy paste then I used the stick blender to do what I could, luckily the only thing I was trying to make smooth was raisins so the ones and bits of ones she found were acceptable, had they been bits of beetroot, or carrot, or pumpkin things would have ended very differently. I think tomorrow I’ll try the same again, if I can face the thought of the mountains of washing up created by using these two separate appliances.

So that is my initial mission, to get something nutritious in to Yogi, something that she enjoys eating. She’s pale, her skin sometimes looks almost transparent, she tires easily, she’s full of mucous, she cries so often, and it’s usually tiredness or hunger that sets her off but convincing her to eat is difficult. I try to imagine a summer of kale filled smoothie ice lollies, carrot cakes, pumpkin waffles and cassava root ravioli – nothing whole and pure but I’ll take whatever I can get with her. (Boo will eat anything except chick peas, kidney beans  and I haven’t convinced her to try liver – but she’ll eat any fish or shellfish you put in front of her, any vegetable, any meat, she’ll try any drink, any food)

Tonight I leave you with Millie

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time to blog again?

I feel it is. I”m not sure what I should blog about at the moment though but I think it would be useful (to me at least). It’s been so hard to blog since I became too unwell to have much going on but maybe now is the time to blog the most – if I am blogging for myself that is. I think I stopped as I couldn’t find anything interesting to say, I have more than enough going on with my illness without blogging about it too. Maybe I should have just carried on though and maybe that would have helped me.

In truth, life is tough. I’ve had a couple of years of finding everything tough, sometimes it’s been too tough to get out of bed, for days. Sometimes getting out of bed has been all I’ve been able to manage. No one saw me then, except my family, and by family I mean those that live with me. I don’t like to share, or to burden, but not sharing probably made me more of a burden on those within my home. Poor Boo, capable before her time, making lunch for her and her sister, just ‘getting on with it’, poor Yogi, coming upstairs to love me, to play games with me, sometimes just to snuggle up. Maybe others would have come in to help but that’s not the experience I have. Where (who) I’m from we don’t do that, we don’t ask for help and if it is offered we make sure the person offering realises that we really don’t need help, even when we do, when we desperately do.

So, what’s wrong with me? Nobody knows, they thought it might be Multiple Sclerosis because that’s what it looked like, but the MRI didn’t support that, they’ve repeatedly tested for Lupus, but the blood results aren’t quite right, I had a sky high Rheumatoid Factor at one point and so they pinned Rheumatoid Disease on me, but now it doesn’t fit, they still toy with Lupus, and with Sjorgrens. Back and forth, back and forth. They’ve settled for ME, Myalgic Encephalomyelitis, and RD. The drugs I’m on are pretty…. awful. My hair has thinned so much, but I don’t have joint pain anymore, I seem to (finally) be a bit more mobile. I’ve been taking immunosuppressants for over a year now, and I’m not fixed. Sometimes I takes drugs to stop me feeling sick because the other ones are making me sick. I only took them so they’d fix me. I keep taking them as I’m worried that not taking them will send me backwards (and I definitely feel a bit further forward even if it’s only a couple of steps). They jiggled the drugs in August when things hadn’t improved at all, there was definitely improvement there – that’s when I started the Plaquenil (the Lupus meds), and then another minor adjustment in January seems to have helped also. I can look ahead with optimism. The optimism unfortunately keeps waning, it’s ok on nights when I can sleep, on nights when there’s no pain and I’m not too exhausted to sleep, but on nights like I’ve had this week when sleep doesn’t want to come I feel less optimistic, as though, at 40, I’ve had it, my best years are behind me and the future is one of wheelchairs and dwindling health.

One thing I am thankful for (health wise) is that, despite sometimes feeling a bit down about it all I haven’t become depressed. Sometimes (often) I am angry or saddened by my situation but I don’t feel depressed. I have been in the past, and this is how I know I am not now. I am truly thankful for the fact that my physical health has not managed to destroy my mental health. Yes I could be happier, yes I feel miserable at times but I don’t feel that horrible miserableness, that hopelessness that comes with (my) depression.

I am also thankful for my family, these folks who have been here and helped me, physically, emotionally through the last couple of years, the girls have been amazing, Ed has helped me more than a daughter should help her mother, Nige has been so much more than a husband, the four of them have been my carers. Even tiny Yogi who has just turned 7. Nige is amazing, I’m not sure how I would have coped without him. Without his love and support, without his unending optimism (which I know has taken a battering) I don’t know where I’d be right now, but the chances are it wouldn’t be here, writing this blog post.

I leave you with Bob, upside down.

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this house living malarky

well, truth be told our year of being back in a house has been a tricky one. i know we had no end of problems under canvas but i have to say i’d rather be there than here. yes i missed baths and easy cooking, yes we had neighbour issues but i still prefer that to this. i slept better, physically i was better, the children were more chilled out. i miss the simplicity, i miss the outdoors, i miss dim lighting and a lack of electricity, i miss the closeness of the whole family. here there are too many rooms to escape to, to many walls to put between us, we end up shouting out at each other and still not hearing, we end up sitting apart, even at night when we were up and the girls were asleep there was a proximity, now they’re a doorway, a set of stairs, another doorway and the other side of the room away, we go to bed and i can’t sense them sleeping nearby. we’ve just spent 4 nights at Tribal Earth and i loved it. i slept better, i was more awake and able to function in the mornings, when i woke in the night i could look over and see the girls. cooking was a bit rudimentary, but simple enough, i missed our compost loo but the loos were adequate and now we’ve discovered the beauty of the bucket shower my  bathroom requirements are easily satisfied (also at tribal earth they had a water trough with a fire beneath – something we talked about last year but were too busy to actually get round to). I don’t actually want to be in a tent again but a yurt or a hut of some kind would do the trick. i’m not sure how long i can live in a house, it’s stifling, it’s just so unnatural! would like to work out some kind of freezer/decent fridge solution though as keeping food cool & bulk(ish) buying becomes a bit of an issue with no cold storage.

anyway, there’s my latest rambling, and rambling it is.

A plea to the universe

People keep telling me that if I don’t tell people what it is I want, or rather if I don’t ask for what it is we need then I will never get/someone who can help will never know. So, that leads me to this blog post.
We do love lots of aspects of this house. We do not love some aspects of this house.
Truthfully though, we miss the woods, Boo misses her freedom,not just her freedom though, the ability to climb 20 different trees in a day, to build 3 dens, all different, to watch birds, lots of different birds! I crave hens, and pigs, and sheep, I crave the peace of woodland, coupled with the meditative quality of dappled shade. Ed, she just craves the woods – which seems amazingly odd considering how much she hated living in the woods…. In reality, it wasn’t living in the woods she hated it was in actual fact the disorganised life we had in the woods that she hated. The absolute awfulness of the weather (and Niges work hours) meant that the functional cooking area never became a reality, nor did the clean up area, the weather meant the shortish trek to the shower became a hike around the perimeter of the 5 acres of woodland we were living in. And then there was of course the planning issue. Ed did not like being watched, she did not like her comings and goings scrutinised by a miserable busybody who really had nothing better to do with her life than make ours miserable. If the weather had been better we might have been in better spirits, more able to shrug off the awfulness that was her constant spying but it wasn’t. I mustn’t forget the other two either, Yogi misses it, she says so a lot, I think it’s because I was more present with them, also she did in fact love squelching through the really icky mud in barefeet, feeling the mud squish up between her toes, she loved the compost toilet, the wee bale and she loved playing fairies amongst the trees. Finally we have Nige, he was happy in the woods, he likes nature, he likes it to surround him, he loves the sounds, the smells, the sights.
What I’m saying is, that although this house ticks many boxes, it doesn’t tick enough. We can happily survive in a much smaller house, I miss my childrens constant presence now that they run off and hide in their rooms, I miss the sparcity of ‘stuff’.
What we need dear reader is a house with some land and for some of that land to be wooded – or alternatively we need some woodland with a clearing and space for a yurt. We do not need a lot of indoor space, 2 bedrooms a kitchen and a bathroom will do us, but we do need outdoor space, I’d like to raise our own meat and grow our own veg, but for that we need space. We can’t afford much however and we need to stay local – the local home ed community is amazing and we have some truly wonderful friends, and of course Ed has been accepted to her preferred college and we need to stay on or near the bus route for that.

Someone asked today whether it was possible that moving back into a house (or this house specifically) might be what had triggered my illness. I don’t know, I can’t say but I feel things would be better viewed through the door of my cottage, with the hens clucking around in the background and the delighted squeals of my children as they clambered and swung in the trees.

So, if you can help us please do get in touch. It sounds like such a huge ask but if I don’t ask no one will know and things will never change.

Eating paleo

Well, it’s been a few months now since we returned to paleo, allowing for the bits and pieces of cheating that’s been going on I just had to say that I discovered this week that not only have I lost ‘lots’ of inches, but it turns out I’ve lost 11.5 kg – the worst thing about that I think is admitting I have lost that much considering how far I still have to go – I remember seeing the shocking truth on the scales way back in September and almost crying – but it had been a particularly trying summer with a diet of either junk food (predominantly McDonalds), or very high in grains and legumes. I still need to get back to being good on my paleo diet – I was doing well and feeling better and then Yogi had a birthday and we ate Pizza…. that was less than a month ago but I haven’t been brilliant about it since, and with a relapse in my health proper cooking tapered off again. It’s prompted a renewed/revised meal plan for the second month running, including actual recipes each day rather than a ‘this is the meat, improvise’ attitude, and a definite attempt to actually plan lunches too. I’m still dodging the AIP bullet, I just don’t seem to be able to manage it. I find cooking with tomatoes so much more inspiring, and with a fusspot at the table I need the food to be as delicious as it can be and with health being what it is I need meals to be as easy as they can be. Combine fusspot, with ease for me and you come up with tomatoes. It might be easier once our herb garden emerges but I’m still worried that without the beautifully slowly reduced tomato in the sauce I’m going to lack in the delicious flavours that encourage Yogi to eat her meals – she definitely favours those full of tomatoes and herbs, be it beef, chicken or pork. She also likes them roasted with a drizzle of olive oil and nothing else but I (and the others) need more from our meals! I’m trying to find somewhere local that does a good quality fish sauce which I know will add a delicious depth of flavour but until I do I can’t really try it out. So this month, the AIP is put on hold in an attempt to get Yogi eating more – although I suspect she needs to be on the AIP herself. I need to get back to health quite desperately, but also to accept my health as it is in order to not drown in frustration/desperation. My days are currently spent attempting to drag myself from one hour (or 10 minute slot) to the next and to not forget to feed the children or tend to their other needs. Luckily, they are wonderful and apart from having to break up occasional (although when I’m feeling very rough it feels like every 5 minutes!) rows between them I think I’ve got it pretty good with them.

Now, if only Yogi’s health would improve they’d be darn near perfect.