McCall’s Organics – A Great Resource for Dairy-free & Gluten-free Vegetarians in Manchester

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McCall’s Organics is located on Church Street, where the family have been trading since 1920! They stock fresh fruit and veg, baking goods, snacks, veggie pâté, veggie ready meals, fresh bread, spreads, healthy drinks, cruelty free beauty and household goods, dairy free cheese and chocolate.

Usually in a small-ish shop I have to really search to find anything gluten or dairy free and have even been so pleased to find something that I haven’t noticed it contained meat! McCall’s stocked every single veggie free-from thing that I usually buy, apart from the Genius brand, which I can get from any supermarket anyway. It was like someone had made a shop just for me!

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Here is my shopping, you might have noticed I’ve reviewed some of these before. I would have gotten more but this is all I could carry. (clockwise in a spiral sort of shape) Eat Real Quinoa Chips in Sundried Tomato and Roasted Garlic; These are so tasty and perfect for scooping up humus or guac. Free and Easy Tomato Soup; I’ve really missed Heinz cream of tomato soup and this is fairly sweet with a lovely thick consistency. V Pud, veggie black pudding which, although not perfect, is very recognisable as black pudding and very tasty. Vio Life Pizza Cheese; Not only does this melt well and grate well but it actually tastes of pizza! Bouja Bouja Hazelnut Truffles; Little sweet choccy truffles with a light dusting of bitter choccy on the outside (best kept in the fridge so they don’t go too gooey). Kingfisher Toothpaste (they stock various flavours) which is cruelty free of course. Free and Easy Vegetable Balti is a spicy vegetable stew type of curry, which is great with rice but surprisingly filling on it’s own. Weleda Calendula Shampoo and Body Wash for kids but I love it as it makes my course hair incredibly soft and shiny. Organic Smoked Tofu; I like this fried with white onion and yellow sweet pepper, with added salt and pepper. Faith in Nature Soap, which helps to balance skin, rather than dehydrating it. Ecoleaf Aloe vera Handwash (not seen), which is antibacterial, cares for skin and only has a subtle scent so perfect when cooking.

What are your favourite free-from and cruelty free shops?

Chrissie

Good Full Stop – Dairy and Gluten Free Bars

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Good Full Stop – located in Devon – have created fruit and nut bars that taste like enjoyable snacks (even chocolate bars) which are healthy and give you energy for longer. They are dairy and gluten free and have a low glycemic index. Perfect for people like me who need to keep blood sugar levels constant and also maintain energy throughout the day.

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Here are the flavours which really stood out for me…

Choc & Orange – I’m not usually a fan of this flavour combination but this was the perfect breakfast bar. Not too sweet and slightly tangy, it was a nice start to my day.

Fiery Choc & Chilli – I think this one might actually be too strong for most people but I loved it! Okay, so I had to give half to my Bloke for the sake of my tongue but I really would go out of my way to shop for these.

Mixed Nuts – A little disappointed with this one as I was hoping it would be very nutty with a rougher texture, rather than smooth and blended like the rest.

Cherry & Maple – I’ve never heard of this flavour combination before (maybe an influence from across the Atlantic?) but it works so well. I ate this far too quickly and then was sad three was non left, ha!

Which one’s would you try?

Chrissie

 

 

 

 

Activewear You Want To Wear

Pretty Active
Active wear, active wear, I go everywhere in my active wear!

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Lush (Halloween) Monsters’ Ball Bath Bomb

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Lush have 16 halloween related products including bath bombs, bubble bars, a black lip tint, a shimmer bar (for party skin) and soap. I chose this Monsters Ball (£4.50) bath bomb because my legs love the Himalayan rock salt as it helps with water retention and wrestless legs syndrome at night. Plus he’s a cute little monster.

The combination of lime and neroli oil combined to create an unexpected scent, reminiscent of zingy strawberry sweets which lasted all through my bath. It fizzed for a long time and turned the water pink, then blue and then all purple. I broke him (it!) up into two as there was more than enough for one bath. Relaxing, uplifting and made my skin surprisingly soft.

Rating 4/5 (I’m saving the extra point for when I get the beautiful golden Bubble Bar)

Chrissie

 

 

My Lifestyle Lately – May 2017


Obviously as I’m Mancunian there has been one big event for me which has separated May from any month surrounding it. The terrorist attack. I have so many things to say about this, how upset and angry I am, the social and religious politics, the possible ramifications and what actions could be taken now, but I’m emotionally exhausted by it so I won’t. What I will say is that the resilient and empathetic spirit of my fellow Mancs and the support from people around the world has been amazing. I’m actually writing this to the sound of The Courteeners concert drifting over from Old Trafford Cricket ground and they are doing a cover of Oasis’s Don’t Look Back In Anger, with all of crowd singing their hearts out. Aw shit, I’m filling up now. I really do love Manchester.

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Food & Drink

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Have you been drinking lots of water but still feel more thirsty, brain foggy or fatigued because of the heat? I’d give this a go. It tastes like blue ice pops (you can get other flavours like strawberry and tropical) and because of the aloe (i.e electrolyte) content, it hydrates better because our bodies use it more efficiently, rather than just rushing it through our system like it would with water.

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As the weather has been so warm I’ve only been able to manage very light meals. I’ve discovered that Original Sheese spread can be broken up and used as a creamy feta cheese alternative.

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I’m starting to see why people mistake me for a vegan but it’s actually my wonky body that can’t cope with dairy and egg white for gastro and auto-imune reasons. I miss having omelettes though so I was pleased to come across this. If you use it with a small amount of say, mushrooms and are sparing with the cooking oil and leave it alone to cook, rather than harassing it with the spatula, this comes out brilliantly! Unfortunately I was too hungry to take a photo of my perfect first time attempt. Then I fracked it up something terrible the second time – doh!

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At the begging of the month it was my birthday so me and the bloke hopped on a bus and then a tram and went to our fave Indian restaurant of all time, Lilly’s in Ashton-Under-Lyne. You can read my review of Lilly’s here. We also got a lot of takeaway which lasted us for around three days!

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I’ve been making cold mocha’s every evening so there is one waiting for me as soon as I get up. I actually take it back to bed with me. 1 heaped tspn dark cocoa powder (mixed with a little cold water), 1 heaped tspn instant coffee, 2 rounded tspn sugar, 1 tspn vanilla essence, a little hot water to mix, fill up beaker with unsweetened almond milk. Chill.

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I compiled a dairy and gluten free shopping list and reviewed each item to make it easier for people who are feeling a bit overwhelmed with this kind of dietary transition.

Fashion & Style 

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I put this Romwe wish list together right at the start of the month and managed to resist buying anything for myself. op

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It’s funny that in the same month that I’ve stopped approaching any brands, two brands have asked me to collaborate with them on Outfit Of The Day outfit reviews. However, the items (around six of them) are taking ages to arrive so those will be live on the blog next month. I’ve also ordered stuff from EMP, yet again and opted for everything to arrive together but apparently it’s not all available (even though they weren’t ‘Out of Stock’) so that hasn’t arrived either. Only just realised last week that my fave jumper works really well with my fave skirt, both of which I’ve had for ages, ha!

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Even though I don’t rent a place I can call my own, I still love compiling homeware posts every now and then like this In The Tropics one.

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I made a Stylish and Sensible Summer Shoes post because I like alteration and not falling over when I walk in summer.

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No, not me going for a job as a waitress at a sports bar but me melting in this fracking horrendous heat. My feet still get cold in the evening though due to circulation issues, hence the Uggs. I actually love this basic look but haven’t been brave (crazy?) enough to leave the house in it yet. I’m managing to keep weight on these days but my muscles tone is disappearing fast so I’m getting a cross trainer for less fatigued days (I’m being very optimistic here) as it will give me a whole body work out but the machine gathers it’s own momentum quickly so you can put as much or as little effort into it as you want.

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I’m a firm believer in wearing what you want no matter what size or firmness you are so I gathered together the 15 best shorts. There is a style here to suit everyone. I’ve bought the denim scalloped hem one’s from H&M and wear them with very sheer black tights and they look great! I keep meaning to get some black fishnet tights to wear with them and with my ripped jeans for a grungy feel (like I used to in the 90’s) but I keep forgetting.

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I would stagger around blindly in summer if it weren’t for my sunglasses. Some of these are off-the-shelf but some are designer so they should be widely available in options if you need prescription lenses like I do. I suggest getting polarised lenses to decrease glare if you are light sensitive.

Random Stuff

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As a fellow geek I decided to join in with the The Geeky Girl Tag after I enjoyed reading other bloggers answers.

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I wrote this post as I wish my parents would have come across something like this when I was a kid as they and they and my paediatrician and my teachers where clueless as to why I was struggling so much and therefor how they could help me to help myself. Actually my Paediatrician barley noticed. *giant face palm* As a child I was very aware that I was different. Things didn’t come easily to me, yet the other kids magically seemed to instantly know what to do and how to do it, without constant mishaps. As a teen I realised I had a rather different thought processes going compared to my mates as well a lot of the time. Like what is the point of over analysing the way that cute guy said “Hi” to you for hours. Just be glad he said it and maybe even have an actual conversation next time. Reading something like this would have made me feel a lot less like an alien from another planet.

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I made a Funko Pop! of myself, which I’m pleased with.

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May has been Ehlers Danlos Syndrome awareness day, which is so important as it’s one of the most misunderstood and miss represented genetic disorders out there. I’ve been given a verbal diagnosis of EDS but several Rheumatologists are still refusing to put it in writing on my medical records. Preferring instead to say instead “Christine is having it that she has EDS” er, I’m ‘having it’ because I was TOLD that I have it FFS!?!? It’s important to mention that all of this stubborn ignorance and arrogance from specialists (and I do use that term lightly) makes dealing with EDS so much worse as it’s a constant battle with people who’s actual job it is to know better. It really does make us emotionally exhausted and just adds to all the other shit we have to deal with. I’m so lucky to have received support from an amazing online community of fellow zebra’s here, otherwise I would have been questioning my own sanity.

Beauty and Skincare

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I reviewed e.l.f. Studio Tone Correcting Powder and Studio Flawless Foundation and was impressed with both products. In fact their foundation was the best I have ever used!

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I arranged my lipsticks in colour order and had a general makeup clear out. I just kept on buying the same 3-4 shades of lippy over and over again, having forgotten that I already own them. I’ve thrown out any shade that needs mixing with another to create the colour I bought it for in the first place and any lipsticks which are either too drying or slide off after ten minutes. Same with foundations as I don’t have the time, storage space or patience to have to mix several together to get the right colour or consistency. No more making-do with crappy makeup.

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I reviewed Soap & Glory Perfect Ten Shadow Palette but wasn’t that impressed with it for some unexpected reasons.

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I finally found a use for my old metal heart cage. Storage for all of my mini’s and free samples.

Well that was quite a catch up! Let me know if there was anything you found interesting.

Chrissie

 

Gluten & Dairy Free Veggie Shopping List & Reviews

Tesco Onion Rings

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Tasty and crispy.

Cauldron Marinated Tofu Pieces

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I absolutely love these simply fried up with some white onion and covered in salt, Szechuan pepper, black pepper, a tiny bit of BBQ sauce.

nakd Peanut Delight and Banana Crunch

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I know a lot of people don’t like nakd bars that much because of how squidgy they are but these two bars are crunchy with lots of texture. Whenever I come across the peanut one’s I buy about five at once.

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B Free Fajita Kit consists of some of the best gluten free tortillas I’ve tried, slightly sweet but spicy seasoning and spicy salsa.

Terra Vegane Easy Cheezy is a powder which is really easy to mix with any milk substitute and freshly cooked pasta in a pan. The flavour is very subtle so I use rice milk, a pinch of salt, a flat teaspoon of sugar and some smoked paprika to add a unique cheese flavour.

Cortas Falafel Mix is so simple to make. You just ad the required amount of water, stir  and let sit for two hours. It looks a little sloppy but if you plop a spoonful into a frying pan and leave the underside to fry before you try moving it you will get crunchy falafel where the centre is still soft and slightly moist.

Tesco Curry Noodles taste similar to a curry Pot Noodle (which is a nice change from Thai style curry flavours) and the rice noodles have a more solid consistency than some others I’ve tried. Perfect quick meal that’s surprisingly filling.

Schlar Cream Crackers taste a lot like Jacobs cream crackers but they are rather brittle and end up in pieces every time I try to spread something on them!

Curried Patra

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A roll usually provides two servings. This is easily reheated and rehydrated when nuked in a microwave for two minutes. Really tasty, even more so with a drizzle of sesame oil.

Ten Acre Crisps cheese and onion (I refuse to pretend that a piece of cheese is meeting an onion) flavour

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Me and my friends all read the ingredients because we couldn’t quite believe that these crisps were dairy free. They are delicious! Ten Acres (veggie) Chicken Soup flavour crisps are also amazing.

Meridian Pesto (I drew the ‘C’s’ on it so as not to confuse it with the Bloke’s jar)

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I love how much texture and protein this pesto has because of the large amount of cashews. I do wish it contained more salt and oil though as I always end up adding some.

Mrs Crimbles Bakewell Slices

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These Bakewell Slices along with Mrs Crimbles Coconut Chocolate Macaroons and Jam Coconut Rings have meant I’ve been able to eat cakes again when ever I want. They are so moist and lovely.

Good Hemp, Hemp Seed Hearts

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I was intrigued and a tad baffled when I was presented with these. Turns out they are perfect for adding a mild nutty flavour and a lot of protein to cereal or salads.

Go Falafel

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Yeah, I know this chain is really well known but it’s so good! I don’t know how many years the one just around the corner from Piccadilly on Newton Street was there before I found out about it. They are dairy free and you can ask for the Lunch Box with another piece of falafel instead of bread if you have a gluten intolerance or allergy. The salad is always interesting and fresh and changes slightly daily.

Which one’s do you like and which will you try?

Chrissie

Motivational Monday – Telling It Like It Is

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So volunteer for the next tea round or go to the corner shop for that forgotten loaf of bread. Maybe have a quick tidy up or get off the bus a stop earlier, it all adds up.

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Apparently our brains are hard wired from caveman days to continually analyse our mistakes and bad situations so we don’t repeat them. Also, life isn’t fair and bad shit happens to good people obviously. However, you gotta choose to let the past go though, before it negatively effects your future.

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This can apply to how you treat others as well as yourself. Next time you are about to open your mouth to criticise someone (again) for something they did in the past, maybe don’t.

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Fair enough lol

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This actually gave me goose bumps I thought it was so clever and bad-ass.

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The birds are singing, I’ve got food in the cupboards, my socks actually match, I patted a friendly doggy today.

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Life lessons.

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Sometimes what you have planned your life to be doesn’t make you happy and sometimes, something totally unexpected does.

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If it’s just not you, then why are you wearing it? There’s a big difference between giving new things a try, and wearing what others expect of you, especially if it makes you miserable.

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Absolutely.

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Especially in a zombie apocalypse.

Chrissie

Your Tea – Tea Face Healing Hydrating Tea Scrub

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Your Tea is a company which sells all kinds of tea, tea accessories and tea based beauty gifts. Tea Face Healing and Hydrating scrub ($24.95) is said to assist with a radiant complexion, healing scars, addressing uneven skin tone and drawing out impurities. It contains all natural ingredients including Rosehip Oil, Patchouli Oil, Jojoba Oil, Ylang Ylang, Cold Presed Coconut Oil.

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I thought this scrub would be messier to use than it actually was but the tea granules stuck together quite well as I scrubbed my skin in circular motions. I leaned back to chill out for 15 minutes to let the oils soak in before removing with a damp flannel and rinsing my face with tepid water. I was impressed with how effective the exfoliation of this scrub was as it left my skin feeling really smooth. It also looking radiant and a lot calmer than before. Some scrubs leave my skin a little red or flushed but Tea Face actually calmed down the redness that I had across my nose and cheeks.

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I decided not to use any moisturiser straight afterward as I loved my skin the way it was! I really like the packaging as it’s easily recyclable and I’m going to re-use the glass jar as I think it’s lovely. It’s important to keep the scrub in the fridge once it’s opened, which keeps it fresh and really adds to how refreshing it feels.

Rating ❤ ❤ ❤ ❤ ❤

Chrissie

Aptonia Soft Wrist Brace from Decathlon

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As I’m sure a lot of you know by now, I have Joint Hypermobilty Syndrome so I end up over extending and hurting my wrists on a daily basis. This Aptonia Soft Wrist Brace from Decathlon was recommended by someone in the fantastic Hypermobilty UK Support Group on Facebook. It’s adjustable so it fits my skinny wristicles and oddly square mitts. I had to cut the width of the thumb strap down, which was really easy and it hasn’t frayed.

  • Comfortable
  • Easily adjustable
  • Wipe-downable
  • Can be worn loosely for bed
  • Can be tightened to provide enough support to lift pans and chopping boards, do household chores or light sport (I’d get the stronger support for squash or tennis though, trust me)
  • Looks pretty cool

Rating ❤ ❤ ❤ ❤

Chrissie

My Weird & Apparently Perplexing Disabilities & Conditions

Theres a lot of information to convey here so to stop you getting bored and to stop me getting totally lost in what I’m saying, I’m just going to list them, tell you when I first noticed them, when and who I tried to get help from and whats being done about them as they all kinda weirdly link up.

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Hyper-Thyroidism

In my early 20’s walking home from work ever night, I’d tell myself ‘I just need to make it to the next lamp post’ over and over until I got to my front door, I’d be that exhausted. It wasn’t until one day in work when I was slurring my speech, couldn’t walk or think straight that I (and my lovely colleges) got worried. I booked an appointment with my GP and was running late, he phoned my landline and when my Mum answered he began to question her about me possibly ‘burning the candle at both ends and partying, like these young one’s do.’ My Mum was gobsmacked and told him a) I was an adult and therefore he was breaking patient/Dr confidentiality b) I was a sensible young woman and if that if partying was the reason for the exhaustion I could have figured that out for myself and c) he was being very assuming, patronising and arrogant and the least you expect of your Dr is for them to believe you when you are clearly ill! He did a simple blood test and confirmed I had an under active Thyroid. Sadly, that was the simplest and quickest diagnosis from then on.

Massively Swollen Puffy Ankles and Feet

Aged 12 I went to my GP one summer and showed him my giant elephant ankles and feet. He immediately told me that I was obviously having way too much salt. I told him my parents brought me up to eat moderately healthily and I didn’t add extra salt to my meals and never ate ready meals. He told me to reduce my salt intake ‘drastically’. Years later in my early 30’s I mentioned to my mate that “My body just doesn’t sweat” so when I’ve been walking in the sun for around 40 minutes I feel nauseous, have a headache and feel really quite feel faint. He immediately looked concerned and asked if I was getting enough salt as you need a certain amount for your body to start sweating and to cool down so you don’t get heat stroke, which I’d been getting! Also the body needs a balance of salt, sugar and water (those electrolytes in those isotonic drinks everyone buys these days) in order for the body to function properly. As soon as I increased my salt intake I stopped getting the terrible swollen ankles and feet which had dictated my miserable fashion choices every summer for the past 20 years and I had lots more energy as I wasn’t dragging around pounds in water weight!

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Food Intolerance 

By the time I was in my mid 20’s I figured something must be wrong as was I tall and slim, yet I had a very distended round belly, like two thirds of a football. I looked four months preggers! I went to see a nurse and was told “Be glad your tall and slim in most other places, we can’t all look like a model.” and sharply asked “Is there anything else or is that ALL you came to see me for?”

A few years later I figured out it must be a food intolerance from several articles I’d been noticing in various magazines and went to see a GP. She agreed and told me to do a food elimination diet. When I asked for more information she looked at me like I was daft and said “You cut out most foods and then reintroduce them slowly. Anything else you need to see me about or is that it?”

It turns out after paying privately for a blood test along with a thick info booklet and food planner, that I’m intolerant to wheat and gluten and dairy and eggs and that symptoms aren’t always evident for up to four days. There is no way I’d have been able to figure out all of my intolerance’s and kept up a healthy diet on my own! Symptoms include bloating, facial redness, water retention especially in the face and stomach, skin itching, temperature fluctuations, constant thirst, headaches and stomach pains, sneezing, blocked sinuses/excess snot (sorry!) and fatigue. I’d had all of these all of my life (when I was a kid it was like I had the flu constantly. If I made it to school for four days in a row, it was miracle!) but the symptoms were never connected to food intolerance or even to each other.

Dyspraxia

Had this all of my life, first noticed by my parents and primary school teachers but not by my Dr who I’d been under since I was born! Teachers asked my parents, my parents asked my teachers, both were utterly baffled at my way of thinking and doing things. When I was 28 I read an interview with the singer Florence Welch who talked about Dyspraxia and it was an utter revelation!

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I asked a GP to get help with this aged 30. He was sympathetic to the amount of stuff I’ve always struggled with and amazed I hadn’t been diagnosed with disability as a teenager or at college. He astonishingly referred my to a Neurologist. These referrals are like gold dust! I then got passed between three of them because non of them dealt with Dyspraxia and didn’t really care or know who did. Five years later, yes FIVE, I’ve gotten a referral to a mental health team with maybe a years wait list to then get referred to some kind of Physiologist, hopefully the right kind.

Sensory Processing Disorder (SPD when your brain over or under processes stimuli)

A large amount of people with Dyspraxia also have SPD. I along with everyone else just thought that I have very particular quirks and like things just so, however as a kid I’d get really upset easily if I was too cold, too hot, the food ‘felt funny’ in my mouth, clothes were too scratchy or it was too windy etc. I have more quirks these days but get less annoyed/upset because I realise it’s just my sensory shit and I can find ways around it or ways to cope with it. Unless things I’ve been expecting and looking forward to something and then it suddenly changes, which really really upsets me as I feel sort of lost and bewildered. Lack of ability to adapt to new things is very common for people with autistic spectrum disorders. SPD and Dyspraxia kind of run parallel and overlap a lot with spectrum disorders you see so some people who have Autism/Asperger’s also have Dyspraxia.

I’m so glad I found blogs written by Dyspraxic people mentioning SPD because I then found an amazing Facebook group for SPD. We aren’t as unique and weird as we were made to feel at all and actually have masses of sensory quirks in common.

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I asked my Neuro (who denied this condition even existed and said ‘It’s just one of those things, your just being too sensitive’) to refer me to an Occupational Therapist (OT) for help with my SPD and Dyspraxia. She turned out to be clueless as to the term SPD, didn’t seem to understand what proprioception was (the feeling of where the outside of your body is compared to the air around it) or interpception (your bodies navigation system and steering and the way it interprets your senses. The ability to sense the position and location and orientation and movement of the body and its parts. Responsiveness to external stimuli; the faculty of sensation) because she kept just describing me as ‘clumsy’ which is ridiculously simplifying the problem and ignoring so many things which can be done to help with all of that, I later learned. Her advice with my severe memory problems (to the point I feel like I’ve got early onset Alzheimers a lot of the time) and wonky concentration was to print off a child’s work sheet from the internet suggesting I group things together that I’m trying to remember. Gee thanks, I could not have done myself – oh wait….

Demyelination (when the Myelin sheath which protects your nerves from damage is attacked by your immune system)

This was discovered by mistake when I had an MRI looking for reasons other than Dyspraxia why I might have had Dyspraxia all of my life as my Nuero thought there must be something else causing it. He happened to discover Demyelination which I can’t have had all of my life because it usually develops over time and from the age of around 20. It could be MS it could be something else. Whatever it is, my immune system is basically attacking healthy cells thinking they are invaders, causing them to wear and then to get damaged and then scar so the nerve signals get weaker or disrupted/distorted.

Hypermobilty – when joints are too flexible, which can lead to joint and muscle pain, joint stiffness and accidents and Arthritis, the auto-immune kind oddly enough!

A large majority of Dyspraxic’s are hypermobile. I’ve been having problems with my joints since I was 14 when one of my knees sublaxed, meaning the joint almost comes out of place but manages to just hang in there and in my case, rock back into place again. I was sent for an X-ray and told I was fine.

This happened three more times by the time I was 20 and it had gotten to the point were I was no longer able to run without my knees suddenly collapsing and I was in mild pain all winter. I complained to my rather perplexed GP and I got sent for another X-ray and again told I was fine and ‘it’s just one of those things’.

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So at the age of 33 I asked for a referral from my Neurologist (utterly incompetent as a Neurologist but he’d do any referral, just to get rid of me I think because I had ‘so many unusual difficulties’) to a Physiotherapist. She was a good laugh and patient with me but couldn’t understand why certain exercises hurt my joints, she suggested I wasn’t doing it correctly, then when she realised I was she just looked confused. Again I got the usual ‘just one of those things’ shrugs.

I asked for another referral to a different Physio “Someone who understands a lot about hypermobilty because my last Physio seemed to be utterly unaware of the condition/disabilty somehow.” A few days before my appointment I learned from the Physio’s secretary that my Neurologist had referred me for weaknesses in my forearms and wrists, not mentioning hypermobilty at all. Utterly irresponsible! If the secretary hadn’t have checked (after remembering my previous request) I’d have possibly seen a second oblivious Physio who, again, could have done more harm to me than good.

So this new Physio Dave was amazing, he not only understood Hypermobilty completely he was also familiar with Dyspraxia and two other related disabilities, one of which we both agreed I most likely have. He gave me brilliant (and realistic) daily exercises to improve my balance, co-ordination, control, strength and stamina. He’s referred me to a Rheumatologist who should be able to tell if I have Ehlers Danlos Syndrome and what type.

My GP (who was surprisingly familiar with EDS) asked me why I wanted the referral “because there’s no cure anyway.” I actually had to explain that if I’d have had a diagnosis years earlier I could have gotten help with so many health problems (which weren’t taken seriously) over my life, which have needlessly gotten worse and done damage so surely it’s better late than never?! Plus, EDS effects the heart so surely that should be monitored at least!

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Ehlers Danlos Syndrome

A certain amount of people who are hypermobile have EDS. It’s simplest definition is faulty collagen, meaning it can be dense in some areas and sparse in others like Swiss cheese, so totally uneven and far too stretchy – Jim Carey’s face has nothing on me! This can effect connective tissue (hence the hypermobilty), your heart valves (mine were faulty when I was born), your digestive system (it’s common to have intolerance’s to wheat and dairy and for it be slow in general, which I have), to have an underactive Thyroid, teeth and bone weakness (my teeth are terribly weak and wear down easily), visible small blood vessels like thread veins and bulging blood vessels (both of which I have on my legs – sexy), uneven collagen (my cheeks are like a relief map of a tiny hilly area, my gums are so fibrous that general anaesthetic is useless, my boobs are way too heavy for their size and I had terrible stretch marks by the time I was 14, I have some scars which are sooo soft as are the palms of my hands and feet incidentally but other scars which are way over the top compared to the initial damage), difficulty absorbing and using certain vitamins (I can’t absorb Vit B12 and need injections instead). There are literally no other symptoms left, I have them all. If these were Pokemon I’d be well chuffed.

Four things to add context….

Each referral to a new ‘specialist’ (I use this term loosely these days) takes between 3 and 12 months of waiting on a wait list. So nothing happens quickly.

Fatigue is increadibly common with people who have Dyspraxia and Hypermobilty because we have to work so hard just to do the simplest of things and my Demyelination also causes terrible fatigue especially in the heat. Oddly this has never been acknowledged by any of my GP’s a) because my Nuerologist hasn’t bothered informing them and b) they all consider it to be just a side effect that’s not serious, even though extreme fatigue (to the point where I sometimes have to be helped out of bed in the pm and with getting dressed) is the most debilitating thing I struggle with, at some point every single day and the reason I can’t work.

After asking a wide range of people in various forums and reading a lot on this subject, it would seem that a lot of people with hypermobilty, dyspraxia, EDS, Asperger’s and Autism seem to be genetically prone to food intolerance. Food intolerance is now thought to be auto-immune related (as our immune system reacts largely to the health of our gut). It’s fascinating (but rather logical) that what we digest can effect the auto-imune system, which in turn can effect the brain, which in turn goes full circle and has physical effects again!

I’ve changed Neurologists. My new one did lots of tests, said he was going to send me for more and actually seemed to understand the terms and disabilities I was referring to – hurrah! Shit, I forgot to ask him to inform my GP’s that my extreme fatigue is very real and why. Looks like I’ve got a phone call to make.

It’s utterly exhausting researching my conditions and deciding on which referrals I need and caring for myself while I wait.

Zzzzzz

Chrissie