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

millie

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.

IMG_6231

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.

Drusillas Park visit November 2012

Sunday 25 November 2012

We headed down to Drusillas Park as a family with our two girls aged 7 and 4.5. We were visiting as part of the Moneysupermarket competition to find Britains best family days out. A sudden black cloud and rainstorm as we got within a few miles almost turned us around but we decided to go ahead and give it a go! We had chosen to go on a Sunday as although it was still considered off peak more was open than during the week.  We knew as well that we were going just before the Christmas special features started up and we were happy to avoid these.

Entry was really quick – there was no queue, I suppose that was to be expected after the deluge of a few minutes earlier. First thing to be spotted were the children’s activity booklets and challenges to do around the zoo.  The girls loved this and straight away grasped their books and pencils eagerly as they zoomed to the first animals.  There was an animals spotters book and ink stamps as we went around, and then also some ‘zoolympics’ challenges throughout (can you jump as high as a cheetah, which animal can you run as fast as?).

The route is quite long, with no obvious resting places, but good and varied in the way the animals are viewable: some behind glass/plastic, some more open air so they could be seen over or through the fence, some underwater or mirror viewing windows etc.  Much of the route around was covered as well so although we actually didn’t get a lot more rain it probably would not have been much of a problem.

The animal highlights for us were:

–          The porcupine: Nige was amazed at how large they are

–          The meerkats: the children get to go through a tunnel and look through a bubble at ground level in the middle of the meerkats enclosure.

–          Penguins are always funny with their waddling and diving and swimming

–          We saw the ring-tailed lemurs being fed – you walk right into their enclosure and they leap around you and walk past you so it’s great and very immersive.

just a blur!

just a blur!

So, we got to the end of the zoo part and were pleased to emerge into an impressive outdoor playground area with towers and bridges and swings and tunnels and lots for the girls to go wild in after the relative order of walking around seeing the animals to this point.

Unfortunately we were pretty hungry by now too, we had planned to have our own food as a picnic, but the rain was starting back up and there seemed to be no undercover picnic space.  The Christmas features were taking over the normal allocated area, and signs everywhere reiterated that you were in no way allowed to sit at the cafes or other seating areas! So we shivered and struggled and ate half of our supplies huddled standing up under a roof of a shop area.  Later we managed to establish there was some tolerance in one of the cafes with a covered picnic area: and a later email conversation with Drusillas admitted that they need to improve this information for visitors.

The information leaflets and maps at first didn’t make it clear to us that there was an indoor play center, so it was a welcome, warming place for us, including space for me and Nige to have a bit of sit down and rest for a while.

We took an obligatory Thomas the Tank engine ride which we found quite disappointing.  I’m sure that littler ones would love it just for being a train and for it being Thomas, but there is very little to see whilst you are on it so it felt a little odd and pointless. Nige had certainly expected that you would get some peeks of the animals as you went round.  The promise of a Thomas ride was a big anticipation for our two and they too seemed a bit let down when it quite quickly came to a halt after just one short lap when nothing very interesting was spotted (I think (if my memory serves me correctly) you might be able to see the Llamas but they certainly weren’t out).

A happy discovery was a walk around maze which was themed around the four elements fire, water, air, earth with some interactive display pieces and riddles.  The girls found it both a bit spooky scary (a number of things suddenly make noise or talk based on infra-red beams) and intriguing, imagination-inspiring and fun.  Our 7 year old wanted to go around it again, alone, and then our 4.5 year old also wanted to go round it again although not so much without one of us.  It might be the sort of thing that older children would find a bit naff and pointless (in these days of high spec computer games), but our girls were willing to get into the idea of it and enjoy it for a bit of make believe, even on a drippy wet day when it spooked them a bit.  A nice feature of the maze was a raised viewing area, where I could see our 7 year old cruising around it from a high up birds eye view, although I couldn’t see her for about half the time she was in…. so not ideal for letting kids be unaccompanied (although I think the sign said they should be anyway)….

We decided we’d done enough, except for a quick pop back to the huge play area to explore the bits that Nige and the girls hadn’t quite managed first time round, and then some chips for all and a final cuppa for us before we strolled back to the car and headed home.

We were given Moneysupermarket discount vouchers to review this attraction free of charge.

Would we pay the full entry fee for a trip there? Unlikely. As home educators, we might be interested if they would offer a good value educational group rate.  Otherwise we would probably go there under some kind of offer such as using voucher or an adults go free offer or similar.  We would generally try to save money and avoid café food by taking our own, so a better message and adequate facilities for picnickers in all weather is important and they may need to sort this out first (although if they weren’t using the space/shelter that is available for their Christmas Wonderland when we went, this might be OK – although it might still be a bit chilly as it is a high roofed open fronted structure).

A new start on the paleo track.

With a new level of organisation comes the realisation that it’s time to organise my body/health.

We’re not sure quite what’s going on with my health but if we are honest we can see clearly that it is autoimmune in nature. This realisation/admission means it is time to get serious with Paleo again – the summer adventures meant paleo went by the wayside – and this time to not just do straight paleo but to trial the autoimmune protocol (AIP).

Honestly, I’m a mess. My right side is weak, I’m in constant ‘discomfort’ and almost constantly in pain that painkillers are only just about taking the edge off, sleep is becoming a thing of the past and so the whole ‘organised day’ thing is a lifesaver. Grumpiness is reigning supreme in my list of moods, with grouchy and weepy a close second. On the other hand Nige and I seem to have rediscovered humour (I did literally laugh out loud the other day – in a spit saliva all over everything kind of way (you’re glad of that image aren’t you?)), maybe it’s a defense mechanism to combat the murk that exists. Did I mention I don’t seem to be able to hear very well and I have frequent vision issues (right side only so far), my fingers are ridiculously unresponsive (which means I can’t knit or sew and forget learning to crochet), and my children and husband look at me in utter confusion as I ask them to ‘pick up the toilet’ or ‘jmumph the cutable’.

Ah well, it could be worse, I could’ve been converted.

Anyway, having gorged on cheesecake last Saturday I have now spent a week grain, dairy and excess sugar free (actually I had porridge midweek, oats but with coconut milk). Honestly, I’m in less pain – not no pain, just less, I’m not quite sleeping properly yet, I’m still pretty grumpy but I’m hoping things are going to steadily improve.

yummy paleo lunch

yummy paleo lunch

The thought of never eating a cake in a coffee shop again, or tomatoes or grabbing some chips on our way home from somewhere or other is initially daunting but then, the realisation hit that these things are really minor. They actually don’t matter in the slightest. Food is delicious, good home cooked, crapfree food is fantastic especially if it’s not hurting my body. With any luck a lessening of pain might result in an increase in physical activity and the two combined might actually help to shift my very not skinny butt…