Realities Of Living With A Chronic Disability; The Balancing Act

Living with a chronic disability/illness feels like a constant tug of war between resting so as not to damage it any further and pushing through so as not to let it ruin your life. The balancing act is not easy, and it’s hard to know how to get it right. 

Often il push and push and push, determined to make the most of each day, defiant that I won’t stop me living a good life. Now a normal person when in pain or body feels exhausted might listen to their body and have a duvet day letting themselves heal. But when everyday you have pain and fatigue how do you know when to stop or when to push through? 

Often there’s the fear as well that if you do stop, you won’t be able to start again. Personally I find deconditioning terrifying. I know my body is deconditioning, every year  what I can do before symptoms ramp up, further decreases. Also as it deconditioning the more the symptoms increase; a vicious cycle it’s hard to know how to stop. 

Also there’s the anxiety fuelled drive to do what I can now; because the realities are in the future I may no longer even be able to consider being able to do them. Conditions that I have such as ehlers danlos syndrome, fibromyalgia, ME and Postual tachycardia syndrome are hard to predict. Opinions on the life time realities of living with such conditions are contridictory and confusing. The truth I personally believe from seeing the lives of both family and friends with the same conditions is that they are progressive.

 With age the more it impacts a persons health increases; for example at the moment at 28 my bladder is controlled with medicine but still spasms and replicates symptoms of a UTI, however seeing friends and family with EDS bladders I have mentally prepared myself by the time I’m in my 40s there’s a high chance it will have gone into permenant retention with the prospect of having to self catheterise  Or a permenant catheter in place. Sure it might not happen, eds effects everyone differently. But realistically there’s a strong chance that is my future.

No one (able bodied or not) knows what is around the corner. But when living the a chronic disability everyday is a potential guessing game of what your body is going to do next.

Chronic disabilities are also invisible. Often this means that from looking at me you wouldn’t know anything was wrong at all. I laugh and smile and carry on because I’ve become stubborn not to let it spoil the life I have. I’ve long since stopped voicing every pain, because why make everything negative and people around you feel bad. I think I may have become so good at masking the pain and fatigue that those around me may believe it’s actually no longer part of my life. What people don’t realise is that unless it has become so agonising I’m at the point of tears or vomiting, I just smile and ignore it. Only very few people, such as my mum who is now my carer and so with me everyday, has learnt to see the fleeting grimace or body positioning to know the truth.

Why am I writing all this? It’s not to put everyone who reads it on a downer, but more to try and explain why I do what I do, and that just because I’m busy and doing stuff doesn’t mean I’m not in pain or exhausted. I may share the good times and happy memories on social media as it helps me feel good and positive about my life. What you don’t see is the hours spent crashed out on the sofa, the scales numbers increasing because we’ve had to send off for yet another takeaway because making anything to eat, even cereal is completely past me (sure that sounds nice, but trust me the novelty of takeaway quickly wears off). What I don’t share is the multiple times that my mum and The Man have to help me with what most people would see as basic everyday routines.

I share photos that I’m smiling and look fairly presentable, I don’t photograph the days I look like death warmed up, why would I? It’s not that those days don’t exist, but why would I want anyone to see me like that? 

But today I wanted to be brave. I want to show the truth of what a flare/crash really looks like. The days when I’m too tiered to even get off the sofa and when it hurts so much every movement just makes it worse. 

So this is me on a ‘good’ day; when I stick a finger up to the conditions and push through everything else.

And this is me today, the times I don’t share even with my closest friends. The times where I flare so much every joint feels like it’s been attacked by hammers and set on fire. When I’m so exhausted I’m too tiered even to sit up straight. 

But I am extremely lucky. I have an incredibly supportive family and husband that rally round to make sure I’m able to rest while they entertain the kids. Who never complain about the impact I’ve had on their lives, or the duties they now have to do to care for me and the household. They do so much that people are unaware of and I can never thank them enough.

So today is a write off day. A date between me and the TV. and while there’s 100 other things I want to be doing and which my mind spins with how I could do them, there is nothing I can do but rest. 

But tomorrow is another day, and hopefully with rest it will mean that tomorrow or the day after that il be back at a level where I can carry on and push through.

I just need to learn to pace myself better and recognise when I need to listen to my body screaming no more. And so we come back round to the balancing act again; of when to rest and when to push through, I doubt il get it right any time soon, but hopefully with time I will get to learn and accept where my boundaries are, and let go of what I couldn’t and shouldn’t do.

Update To: A Letter To My Daughter

So today was the day. The day we were receiving potentially life of death news. Having had 8 weeks of waiting, dreading and imagining the worst, we were finally going to find out the results of Doodle’s genetic blood test. 

Needless to say I only slept a couple of hours last night, so having had to leave at before the sun was up this morning was physically difficult. The whole journey my eyelids were as heavy as lead; I’m not sure if this was due to the lack of sleep or if my pschye trying to lull me back into the deep ignorant abyss of sleep, so as not to have to face the inevitable. 

We arrived early and managed to find a disabled space close by, so had an hour of trying to talk about anything other then why we were there. It was only as we got out I realised we were actually parked outside the Chinese embassy and so now probably on some watch list as suspicious people stalking our the embassy. 

Arriving it turned out that the secretary had told us the wrong time and our appointment was at 11 not 9. I was dreading having yet another 2 hours of waiting, which really isn’t that long in terms of the great scheme of things, but every minute already felt painful slow and drawn out. 

Trudging off to the toilets to calm my nervous stomach (and Doodles tummy) I have to admit how impressed I was with the loo! It’s probably one of the nicest public ones I’ve ever been in. Doodles being Doodles obviously piped up as we were leaving the loo “We both just pooped in the poshest toilets ever. They smelt so posh but we made them stink.” Trying to hush her and quickly guide her back to the waiting room I was relieved that luckily no one was about to hear of our posh toilet desecrating.

Being early the doctors came in and said they could see us before the first appointment; and so this was it. The moment that I had played over and over in my mind for the last 8 weeks, 56 days, 1344 minutes, 80,640 seconds (give or take). 

They started by reminding us that they had believed that she had hypermobility EDS but were concerned that there could be elements of vascular. That was it. My heart stopped, I couldn’t breath, everything slowed down as I stared into the doctors eyes and waited for him to tell us what our daughters future held.

All the blood tests came back clear. It isn’t vascular.”

Never, and I mean never, have I felt such a rush of relief, joy, and complete love for the doctor sat in front of me. I must have been smiling like a crazy person whilst thanking them both repeatedly. They confirmed that she definately did have hypermobility EDS and they suspect probably POTs as well, but after facing the almighty nightmare of vascular, they suddenly didnt seem so scary. Yes their life affecting, but (and a big but) their not life limiting. We don’t have to worry that any bump or trip she has could cause internal bleeding. We don’t have to worry that at any moment, for no explanation, that her internal organs or arteries could rupture causing almost instant death. We don’t have to worry that at any moment she could be taken from us. 

Her body isn’t a ticking time bomb.

The doctors then put together a plan for the physical problems she does face; mainly her stomach and leg pains. I feel secure in the knowledge that there is hope and that they understand what’s going on with her and will help support us in finding the best treatment plan possible. These two doctors are incredible and worth every inch of their golden reputation.

Literally walking out of the office I felt on cloud 9. However it’s only then I was hit by the horrifying realisation of where their office was located. Right next to the desecrated posh toilet. I’m pretty sure they must have heard Doodles earlier declarations of guilt.

To celebrate (and as it was only 9:30am) we decided to go take Doodles for her first ever museum visit. I’ve literally been looking forward to taking her pretty much since she could walk and couldn’t wait to see her face when she saw the giant dinosaur skeletons. 

Outside of the science museum on exhibition road were a number of free disabled bay spaces so we were able to park right up front. However I was then out voted on going to national history museum and instead we set off for the science museum. Now being in a wheelchair can have its perks, besides the great free parking opportunities, we also managed to avoid the queue and were let in through the exit doors.

Now I’m not going to lie. I’m not the biggest science fan on earth, biology yeah I get, but the rest goes completely over my head. The Man and Doodles were completely in their elements! They loved looking at all the different displays, trying out all the hands on exhibitions, reading out the information plaques as my eyes slowly glassed over.

There was a lot to look at, and actually it was all very well laid out. It was easy to navigate where we wanted to go to and how to get there. All parts where accessible and the displays all widely spaced apart and so able to get around with the wheelchair. The only small problem we found was quite a few of the lifts were  out of order and so we had to find another one. 

There were lots of visually pleasing elements and so much thought had gone into the aesthetics and sensory elements as well as the information provided.

Unfortuantly some of the most interesting exhibits such as the imax films and robot exhibit were quite expensive so we had to do with the outside display and trying to sneakily peak through the barrier walls to see what laid behind.

One thing I would recommend for those planning to visit is to take a packed lunch. The cafe was very expensive, but they do have picnic areas to eat your own. 

After a couple of hours I reached my limit and staged a coo to go migrate over to the National History Museum next door. We were extremely lucky to bump into an friend who works there and able to short track us through security as the queues were literally up the road due to now having bag inspections at the enterance. 

I haven’t visited the NHM since childhood but stepping inside I could feel my heart racing as the excitement started buildin in a way any true history nerds should. I love the NHM. I love the displays, I love the adventure, I love the architecture of the place, I love the huddle bussle of all the people, noise and movement. The feeling of being amongst thousands of years of history, in a place in time many people have passed. It is literally my happy place.

The only thing was that unlike the science museum there were no provided free leaflets containing maps. This meant you could either buy one or try and test your luck at finding your way around the neverending turns and twists The Man likened to being stuck in the middle of Ikea.

Of course the dinosaur exhibit was a must. It was very popular and at times slightly claustrophobic especially as The Man was too busy looking at things and not watching where he was pushing me and at time knocked me into people in front.

The Man and Doodles went up into the giant light up planet and explored the earthquake room while I sat and watched the pretty lights and people passing by. 

After such an early start we were pretty pooped and so decided to call it a day and come back another time to explore the rest. So we left tiered, fulfilled and completely overwhelming happy. The weight and stress of the last couple of months gone, ready to enjoy life and what tomorrow brings.

Chatty Zebras Tips for visiting London museums:

  • Take a packed lunch of your favourite treats to save (a lot) of money
  • Try and avoid the busier times and if possible go during term time when quieter 
  • It is possible to reserve a disabled bay at the national history museum but you do have to pre-book it by ringing them before hand (they didn’t seem to be open today so we took our chance on exhibition road)
  • If going to the national history museum print off a map beforehand to take with you
  • Be prepared that certain exhibits you wanted to see May charge for tickets so double check before going

Sliding Doors

So I’ve just brought my first powered wheelchair. Like literally I’ve just pressed the confirm button and received the little invoice page. My first reaction was; whoopie this is so amazing!! I’m so lucky to be able to get it!! This is going to change everything!! Freeeedom!! 

In my highly exhilarated state I posted a screen grab of said chair on my personal Facebook site declaring that ‘in 7-10 working days this baby’s going to be mine *excited bum shuffle.’

And then it hit me.

I’m 28. 

28 year olds don’t get excited about buying wheelchairs.

28 year olds don’t even need to think about needing to buy wheelchairs. 

My peer group, collected friends from past schools or aquantices met at one time or another, wouldn’t even have wheelchairs on their radars. the above post may have caused them on seeing it to laugh at my laminess, or pity me and my current life circumstances.

It sounds crazy but I forget that this isn’t the norm  for other people. I forget that once upon a time I could walk around shops and to and from places and stand for periods of time without feeling my heart racing, becoming air hungry like you can’t breathe, becoming dizzy, headachy and nauseous and being left barely able to speak coherently, racked with pain and flattened by fatigue. 

I’m not saying that for sympathy, that literally has become my norm. My limitations have got bigger but so has my acceptance of what is happening. Instead of mourning what I could have been, should have been, mentally I try and focus on the what I can still do, getting pleasure from the simple things. Can’t go for a country walk anymore, no worries we went to the cinema today and watched a film that Titch found hysterically funny. Can’t pop off to the shops for an impromptu shopping trip, that’s fine because I can do it all online and get it delivered.

Now don’t get me wrong, I still have my down days. I mean there are things without doubt I would love to be able to do which cuts me up inside that I can’t anymore (like running about with the kids in the park or being independent on going out and about as and when I chose). And I would never wish chronic disability on anyone and would instantly change my life to being full abled if I had a magic wand.

But that doesn’t mine my life is bad, or sad. It’s different. We’ve had to adjust, there’s been tears and fears and tantrums (mostly on my part) but I would say we still have a good life. I strive to make the most out of all opportunities and days, to not let my disabilities rob me of fun and life and experience. 

And this is where the new power chair comes in. The last few years I have been using power scooters, but due to them either failing on me or pain levels increasing with having arms extended for periods of time to control it, I decided to look into powerchairs instead. This decision was further reinforced when I realised the simple fact that I can’t do public transport. Now the kids are older I love the idea of taking them to museams and art galleries, but with city traffic being a nightmare, being able to go on a train would be so much more practical. 

Also I want the kids to learn practical life skills and understand how you use buses and trains etc without being reliant just on cars. With the Autism and SPD issues at play I find this issue even more pressing, as I want them to feel prepared, safe and confident using public transport; as I was as a child.

Since the scooters been in the shop I’ve been reliant on the old manual chair. Which I hate. I literally become the worlds most grumpiest cow when in it. It’s like magic! I hate being out of control of way I’m going /stopping/facing and it all being in the hands of someone else. I hate feeling so dependent and a burden on my love ones. It’s also impractical as The Man or Mum are tied up pushing me meaning the ankle biters are on a looser leash and all havoc can erupt. It also makes everything require so much more planning or managing. For example I went with dad to a farm a couple of months ago in the scooter. It was fine I could follow the kids around, tag team dad in who was supervising who, and take myself where I wanted to be. Last weekend we went to the same farm with The Man in the manual chair and instantly everything was harder. Having to plan out the day to minimalise the amount of times he had to push all 14 stone of me up the giant hills. Having to work out how to supervise two ankle biters who wanted to play at opposite ends of the park (one being at the top of the very biggest hill) when The Man would need to manouver me around. 

The chair offers freedom. It means I can join in with everyday normal family activities without missing out or ending up really poorly. It means I can go places and see things and be part of life. It means I don’t have to say no to things or worry about how I would manage the smallest of things most people would just see as everyday life. It opens up my world, breaks down the barriers and makes me feel more normal in being able to join in with things. 

So right now I feel like the happiest girl in the world! 

So please join me in an excited happy bum wiggle, shuffle or dance

I may even let off some imaginary fireworks while we’re at it 😉

Life Unexpected

Today Doodles had Blondie over for a play date so we decided to get the arts and crafts stuff out and have some fun. Now in my head I though ah we can make some suncatchers and put them on the windows and it look all beautiful. 

Now things didn’t go exactly to plan. For a start after a quick peruse on Pinterest I realised I didn’t have any contact paper (whatever that is) but decided to use baking paper instead (I’m sure we’ve done it before using it?).

I was feeling kind of chuffed with how the initial cutouts looked framed with a paper boarder and by all the bright colours out of the bag of bits.

However the kids had other ideas. They quickly dug out the glitter and glitter glue and before I knew it our suncatcher project had transformed into a multi texture collage. It was great seeing them get stuck in and evolving their own art projects in their own unique style. Also I’m not going to lie I got the giggles at the thought of The Man’s horror-filled reaction tonight at the sight of his nemesis; glitter. And oh how much glitter there now is; everywhere. 

Titch declared himself the glitter monster, much to my delight. Yes that’s it’s my child spread the glitter, throw the glitter, make sure everything’s covered in glitter mwhahaha *ahem*

The kids loved it and it took no real effort; just leftover craft bits and bobs, paper and glue (we get all our supplies from Poundland).

As the rain is pouring outside we decided to grab life by the reins and take the chance to go puddle jumping. Thus leaving the debris of above to clear away later (read leave for The Man to discover *evil snigger*)

Now they’ve never attempted puddle jumping in the rain before; previously they’ve always gone out after it’s finished and normally by that point there aren’t many puddles left. Today the kids couldn’t believe their luck! There was puddles galore everywhere you looked.

Some were so deep it nearly overfilled into their boots! Literally I don’t think I’ve ever heard them all laugh so much! It’s what I love best; pure free fun filled joy in nature, honestly does anything else come close? It brought back such a rush of nostalgic memories from my own childhood and the feelings of the rush of adrenaline and euthoria from jumping around in puddles. 

Of course this is us, the Chatty Zebra family, so how else could it end then with Titch attempting to strip off and roll about in the muddiest puddle he could find. He isn’t exactly the best advocate for the fact homeschooled kids aren’t weird. Saying that it did look kind of fun, maybe next time I’ll join him..hmmm…

An Unfolding Adventure

Today we decided to start on our next home ed unit which is vehicles/transport. I was unsure what to do about structured learning over the holidays; whether it was better just to take a complete break from learning like the schools do, or whether to continue with some structured work. Every child is different but with Doodles ASD she craves some sort of routine and quickly gets bored, so having had a couple of weeks without learning she was literally bored to the point of tears. 

Why transport? Titch’s number one obsession/fixation/passion is vehicles. Literally all he asked for for Christmas and his previous birthdays was cars, before that it was trains and now it’s generalised to any thing that falls into a vehicle cateogory. I thought it might be a good idea to use this interest to draw his interest into learning and learning to join in with Home Ed, as he is notoriously one of the most self led children there are. I also thought there are lots of different avenues we could go down with it and involve all different areas of learning such as art, writing, counting, science, sensory play etc (more on that another day).

Now today hasn’t been a great day pain level wise (read bad, very bad). But the way I saw it if I was going to be sat on the sofa in pain then I might as well be sat in the wheelchair in pain. Probably not the wisest idea as probably should rest and pace but screw it I wanted to go out today and fed up of EDS/POTs stopping me.

So we decided to visit a Steam railway. I thought ah ha brilliant! It can feed into our transport unit AND (smug moment) tick two more things off our summer bucket list (ride on a train and visit a historical site) oh how I love my lists 😂

Now how smart did I feel when I found out not only did carers get free travel meaning we only had to pay for the kids, but there was also an event on meaning we could sell it more to Doodles who will go anywhere the chance of a sugar high is possible. 

Now I was literally in my element but all the historical rooms, furniture and features the railway was. I was snapping away in a manner only mad lunatic confined to a wheelchair can, and even out snapped the gaggle of Japanese tourists which I see as a badge of pride.

The fun day bit was small but enjoyable; having lunched on hotdogs and the kids on candyfloss, Doodles went and had her face painted whilst Titch played with some handmade cog toys.

Slight awkward moment when entering the museam part to shelter from the rain (who guessed the forecast would actually be right) and the entertainment juggler asked Doodles if she wanted him to do a trick and she deadpan replied “no” and walked off.

Next we visited the refurbished elephant carriage which had previously been used for circus animals. I was impressed how good the access was for the wheelchair; everywhere had ramps or workers would quickly help to assist with access to the right platforms.

This was the painted interior of the carriage which completely blew me away! It was so beautiful. They had a range of different science experiement activities and toys such as a slide and railway track. Whilst the kids were playing I took the time to photograph the information folder to add to our travel display. It was shocking seeing such exotic creatures in such normal everyday surroundings, and also saddening to see them in what must have been a restrictive lifestyle for them. A strange mix of emotions looking through it, but very interesting at the same time and I loved the photographs (when do I not) as it shows such an amazing window into the past, a moment in time which is now history.

We then decided it was time to actually go ride a train. Titch was beside himself to actually go get one. Due to finding the thought public transport quite intimidating in a wheelchair and the scooter being too big, unfortuantly he hasn’t had much exposure to it. This is something I’m hoping to change on hopefully getting an electric wheelchair as il be independent enough to manouver myself whilst someone else manages the ankle biters.

Now the ticket seller man was slightly bemused when I asked for 2 carers as in his eyes I was clearly in a wheelchair and so completely incapacitated. Before I had to embark on my rant that yes mine is a physical disability but that doesn’t stop me managing and calming Doodles sensory overloads/meltdowns luckily he permitted the sales as we had the relevant paperwork.

He also arranged for someone to help us across the tracks to the right platform. We had an interesting 5 minutes waiting for the signals to change and a train to go past before we could pass. The Man made several jokes about letting me go over the edge, well I think he was joking.

We found that on platform 2 it had parked carriages which included a shop and museam area which The Man and the ankle biters explored, while I tried to take artistic photos of the platforms ceiling.

Doodles literally jumping with excitement on getting to board a real life steam train. 

It wasn’t long before the train pulled up and we embarked on the journey.  Titch was pretty mesmerised the whole time, Doodles on the other hand got quickly bored and the E numbers from the candyfloss lunch kicked in meaning trying to keep her occupied with games of eye spy and prevent her using the train seat as a trampoline or seeing how fast she could leg it up and down the carriage.

When we arrived at the next station we were all thrilled to discover there was a huge trainshed museam to look around (Maybe not so much The Man who was tasked with pushing me, an activity neither of us enjoys but alas the scooter is still in the shop and so I have to relinquish power to him).

At which point we found the workshop area with actual real life repair man in action. Cue awkward moment no.2 when Titch asked why the train parts were broken and Repairman answered because their as old as grandma and grandpa, at which point Doodles deadpan style informs him that grandma died last week.

Titch was in his element racing around the shed, examining all the parts and asking why repeatedly to any explanation we tried to answer his initial questions (to the point the Repairman became slightly annoyed *cough* and so we made a quick exit.

It was then time to return on the last train to our original station. It was all rather cosy chugging along whilst the rain streamed down the window panes. 

The kids then decided to have a drawing contest on the fogged up carriage windows. Much to the delight *ahem* of the other extremely posh and proper passengers. Now I’m going to admit here I was slightly confused by Doodles masterpiece and after multiple attempts to guess; was it grumpy daddy? An emoji? A heart? I admitted defeat and asked what it actually was.

Doodles delighted enlightened the whole very packed carriage at the very top of her voice that she, my darling little angel, fruit of my womb, advocate of Home ed, example of my parenting; had in fact drawn “A BUTT DOING THE BIGGEST POO EVER.” 

Cheers love. Cheers

Summer Tick List Fun

Following the theme of our 180 summer bucket list we decided to attempt several more things on our list and have some fun with our friends:

1. Den building 

12. Sleepover with friends 

14. Movie night 

21. Swimming 

154 Dance show 

128 spa day

We had planned the den building for several weeks, and decided despite the weather to go for it; I mean when did a little rain hurt anybody? Now in our heads we thought the kids would be skipping about in the woods; climbing trees, making camp fires, being mini bear grylls forest children. 

What actually happened was the kids moaned about the weather. Moaned about having to walk. Moaned about having to touch dirty wood and leaves. Literally it was like something out of some American teen high school drama; poor children being subjected to having to touch icky muddy stuff when they could be inside doing makeovers or playing on tablets *rolls eyes*.  So much for natural childhood!

After a tense stand off with two melodramatic teen-wannabes we decided to call it a day and go swimming instead. 

Which was a brilliant idea until I realised I had forgotten the swimming nappies for Titch. After dismissing the idea of using a normal nappy we decided to be brave and free style it. I mean what was the worst that could happen, that’s what chlorines for right. 

Luckily no floaters occurred, or at least none that we noticed. They all actually loved it and the water confidence in Titch has grown immensely! It brought back so many happy childhood memories and nostalgia. It also meant me and claireBear could have a good natter while they played happily without the 2 minute interruptions about who’s turn it is on the tablet or Netflix.

Of course what better way to finish off the nostalgia adventure then with McDonald’s for dinner. Literally I was living my dream having picked everything up from the takeaway to return home with I was literally buried in McDonald’s bags and boxes. Living the dream eh

Now my kids are HUGE screen franatics. They would much rather be sat in front of a screen all day then doing something else. It literally drives me up the wall as they seem to be missing out on so much in life and loosing that sponetiaty and creativity I remember from my own childhood.

So as it was sleepover night we decided to attempt to be a bit creative and hold a pop star show in a bid to spend quality time together. The girls absolutely loved it and there were some interesting pouts and crossed arms any true bitchy teen would be proud of. However I hadn’t quite thought through the competitive edge of it and had 10 minutes of them shouting at us that we had to choose who we thought was best. Doodles is still giving me grief this morning about the fact I didn’t pick a winner.

Then came time for them to drag the mattresses into the front room and snuggle down with blankets and pillows to watch a film together. What did they pick? Legally blondes. Not to be mistaken with the famous legally blonde, this was a ‘spin off’ which was painful to the point of sticking pins in your eyes to make it stop would have been a preferable alternative.

I though aww this is so cosy all of us snuggled up together it make awesome photos. Nope it just looked like we were camped out in some student squat all we were missing were beer and baked beans.

The kids bagsied the mattresses so I ended up on the sofa with Titch. Now for one so small he doesn’t half move around ALOT and take up ALOT of space. Everytime I woke up he was in completely different position and place, at one point I woke to discover him spread out on my stomach limpet style.

This morning we decided to attempt a spa day with the girls. We had planned to do this last night but both had gotten too tiered. Now again in my head this would be a lovely bonding time playing miniature pampering and ultimate girly fun. What actually happened was ‘ewwww it’s slimy’ ‘argh it stings’ ‘urgh this is so gross it’s in my hair.’

My main complaint was the fact mine ended up making me look less like the comical mud mask face packs, and more like I was just really really sweaty. Also ultimately it just stayed sticky and didn’t do that tight cracking feeling face masks normally do or got the chance of the thrills of peeling it off little bit at the time.

We then moved onto nail pedicures. Doodles painted half my fingers in a variety of multicolours then kept lecturing me about using my photo to take photos as I was messing it all up and she had to do it all over again. Funny enough she didn’t allow me to return the favour of doing hers. 

Now looking all fabulous and made up; skin glowing, nails painted brightly, hair lovingly made over by Doodles I was feeling  confident and ready to hit the town. However the postman gave me a slight odd look when I answered the door like this:

I’m sure he was just bowled over by my glamorous stylish charms I was now projecting, watch out vogue here I come.

180 Ideas For Summer; 117 & 157 Nature Hunt and Making Art Prints

Today we decided to get stuck into our 180 ideas for summer bucket list. Having salvaged some remaining flowers from a bouquet I was given last week, we thought it would be a great excuse to attempt some nature prints (an activity we had tried at a home ed fun day). 

Of course this was also a great excuse to go on a Nature hunt to see how many different kinds of flowers and colours we could find. Luckily our wildlife garden *ahem* is full of all kinds of different plants and colours so we had lots to choose from. Like these pretty purple flowers (have no idea what their called) but I absolutely love the colour of them:

There was lots to choose from in the garden and also along the walkway opposite the house. We got a chance to discuss the different types of flowers and colours we could find and it became a bit of a competition between Doodles and Titch over who could collect the most, although I’m not quite sure how we ended up with several rocks and an apple amongst the collection.

Then came the fun part; having emptied the treasures into our sensory tray with some fabric squares (cut up pillow case) the kids dived in choosing which petals and flowers they wanted. They then laid them out of half of the square and folded the other half over the top.

Then they began hammering the top of the fabric crushing the flowers inside to leak colour and stain the material. Now I’m not going to lie at first it didn’t really work too well despite the welly both kids were giving it. I wasn’t too sure if this was because we were using plastic toy hammers (at the forest school at the fun day they used mallets). Actually it was because the sensory tray was springy and so cushioning the impact. Once we moved the fabric on to the tiled floor it worked a lot better.

They had great fun experimenting with different combinations and working out what flowers produced the most colour (roses were pants but then to be fair their pale in colour). I think Titch couldn’t believe his luck being able to hammer away as hard as he wanted and kept shouting ‘hulk smash’ whilst doing it.

The smell from mint and the lavender was AMAZING it literally fragranced the whole of downstairs. Although we weren’t able to get that many colours altogether, I think we will try it again maybe after going on a proper Nature walk and hunt and see what else we could find. Also maybe doing one at the change of each season to see if there is a change in the types of colours nature produces at different times of the year. 

We did debate getting some paints out and using the flowers to paint with, but as it was past lunch time we all decided we had had enough and will maybe pick it up again later. 

I wonder as well if it would work using different fruits and vegetables; I think maybe these would produce more vibrant colours and larger stains? Especially berries. 

The best part about the activity was that it was free! We used an old pillow case and flowers from outside. Both kids absolutely loved the whole process was feels great finding something Titch can join in with and get excited about! 

Hmmm berries…..

A Week of Buddha Bowls

Now anyone who knows me well knows two things:
1. I’m rather partial to anything fried and/or covered in cheese

2. I’m not a huge veg eater (read barely ever) and I like my meat **rarrrr**

However I’ve also always struggled with my weight (doesn’t take a rocket scientist to realise this may be slightly due to points 1 and 2 ahem). I tend to fluctuate between a size 14 and 20, however the last few months it’s been on the increase again and having put on over a stone I decided now was the time to man up about it and take control. 
This week has been literally the week from hell, however I think loosing nan from a bowel perforation reinforced how important diet, nutrition and optimum gut health is (mine ain’t ever going to be good due to the delightful eds). It also knocked into me the cliche of how short life really is and that everything can change with a roll of a dice.
So after having a snoop on instragram I discovered the world that is Buddha Bowls. Now I’m not going to lie I was entirely drawn in by the beautiful range of colours and artistic ways people display them. It made even food I find icky look kind of edible. 
Let’s give it a go I thought and see what happens. Now on previously healthy eating attempts I tend to get slightly obsessive and buy way too much of everything then end up binning 3/4s of it at the end of the week uneaten and rotting. So this time I made a list (of course) and worked out some cheap veggies I could share out over all the meals and save money and cut on waste and all that jazz. 
What I liked about Buddha Bowls is that it isn’t just salad. It uses carbs, protein, fats etc so you get a balanced diet and hopefully keeps you more filled up as I’ve found before with just salads my blood sugar levels quickly drop after an hour or so.
So here’s the weeks results. I must admit I was actually pleasantly surprised. They weren’t as gross as I anticipated before eating each one. They also didn’t take that much more effort then making sandwiches at actually were quite yummy with the different bursts of flavours and textures. Best of all they were filling and I found I wasn’t searching around for a snack mid afternoon as I normally do.
Today I was struggling as the heavy head cold that’s been brewing all week as come out in full force (So much for building the immunity with vitamins *huff*). At this point normally I would give in and just eat aload of junk for lunch for comfort. But today I really tried to push past this and be strong and must admit slightly proud of myself not to give in.
Although I do have an admission to make. 
Although lunches and breakfasts this week would have made any healthy eating guru proud, it all fell apart at dinner times. Due to various hospital visits and the whole week routine being up in the air I have had several takeaways and may have had 4 *cough* and a half sausages last night for dinner. But they were soooo good and tasted so yummy and the kids were just going to bin their which would be criminal really. 
Anyway on this note I was still presently surprised to realise today I’ve lost 2-3lbs despite the gluttonous dinners I have indulged in. I’ll take that thank you! One very happy Zebra 

We had planned to go to a home ed camp the day before and so didn’t have much left in the fridge. Due to what had happened with nan all camping plans were off, but I wanted to get started on the Buddha bowl love (on a plate because I only have teenie plastic kid bowls).

This one consisted of:

  • Wholegrain and quinoa mix (aldi) 
  • Kale
  • Halloumi 
  • Peanut butter with mushed up seeds in it (aldi)
  • Chia seeds (found at the back of the cupboard, pretty sure their supposed to add calcium or something *scratches head*)

Score: yummy would def have again, although have a feeling the fat content may be slightly high


The asda delivery had arrived Monday night so we finally had food to try and experiment properly. I slightly underestimated how far the food was actually going to go and ended up putting half back in the fridge for The Man to take to work for lunch tomorrow (he didn’t).

  • Wholegrain and quinoa
  • Roasted sprouts 
  • Roasted asparagus
  • Roasted chickpeas
  • Roasted leftover kale from yesterday
  • Feta

Score: really yummy and feeling, although the chickpeas probably done with longer in the oven. 


Having spent Tuesday night in A&E with Doodles and her recurrent constipation/tummy pain issues it was safe to say I was a complete walking zombie Wednesday. We threw all on mum and dad’s plates and hoped that the prettiness of the plates would make it look better. Dad had he’s a while later and remarked it was yummy, although I’m slightly dubious about the sincerity of his praise.

The avocado did make all the difference though and must note to make sure have more in the house as everyone loves them. Doodles also loves asparagus and ended up eating dad’s as well as her own. I’m not going to lie I love the smell of asparagus pee 😂 I actually get all excited about having a pee after eating asparagus it never gets old.

  • Rice
  • Avocado 
  • Watercress, spinach and rocket mix
  • Courgette ribbons
  • Carrot ribbons
  • Mixed salted nuts
  • Sprinkled with feta

Score: really enjoyed the creaminess of the avocado mixed with the saltiness of the nuts and tang of the feta


By this point I was getting slightly fed up of the sight of kale and asparagus and sprouts. I also made the mistake of trying to roast butter beans like the chickpeas and ended up with dried out bland mush that stuck to your toungue and made you go urgh.

  • Rice
  • Butter beans
  • Kale
  • Asparagus
  • Sprouts 
  • Mixed salted nuts 

Score: mweh urgh blurgh 


So today I tried to push through the ‘lets just give up and go back to blissfully delusional about how much weight I am now’. I tried to make it a bit more jazzy with lime juice and soy sauce. The soy added a salty taste that I like.

  • Rice
  • Spring greens
  • Mushrooms 
  • Garlic
  • Courgette
  • Lime
  • Soy sauce 

Score: alright, it would be better with a bit of avocado and was slightly sickly by the end of it. Also first time this week that still feel hungry after.

So next week is a new week. With everything still up in the air with funeral arrangements I’m not quite sure where we’re going to be and when. My plan is to carry on but maybe shake it up abit with some omlettes or scrambled eggs and stuff  (more as I can get free ones of mum and dad now). Also starting to crave a bit of meat so looking to use some smoked salmon and chicken breast hopefully. That’s assuming I haven’t dissolved in a puddle of snot by then.

If your interested in oogling Buddha Bowls or learning how to make them properly I found lots on instragram under the hashtags #buddhabowls and on Pinterest. 

Also I found these useful from Pinterest:

180 Summer Bucket List Ideas

Summers here and as I love making lists (like really really really love making lists, probably to a certifiable level), I decided how better to embrace the season then with making a summer bucket list. 

Now as I’m so pants with technology that after half an hour of shouting at the computer because it wouldn’t do what I wanted to, I gave up on a fancy smancy graphic poster and just hand wrote it all out instead (see bottom of post). 

I decided to write a whole post about it just incase there’s any other nerdy list lovers out there that wanted to share in on the joy or inspiration. I did it as a ticklist to see how many we could do over the summer, although in all fairness it probably won’t get looked at ever again (the way previous lists have gone lol!).

I may have got slightly overexcited at the creation of this masterpiece (sniggers) as The Man didn’t seem to share the same joy at the idea of getting a dedicated bullet journal just for list making. 

So here it is 🙂 

180 Summer Bucket List:

  • Den Building
  • Go to the Seaside
  • Camping
  • Outside Cinema
  • Roasting Mashmellows
  • Camp in the Garden
  • Visit a Zoo
  • Visit a Castle
  • Go to a Farm
  • Bowling

  • Fishing/Rock Pooling
  • Sleepover with Friends
  • Family Sleepover in the Lounge 
  • Movie Night
  • Water Fight
  • Pillow Fight
  • Bake Off Day
  • Make Ice Lollies
  • Make Cookies

  • Treasure Hunt
  • Swimming
  • Outside Lido
  • Picnic
  • Pound Cinema
  • Bird Watching
  • Bug Hunting
  • Tree Climbing
  • Star Watching
  • Splash Party

  • BBQ
  • Hiking (scooter accessible for me)
  • Nature Centre
  • Planetarium 
  • Make Icecream
  • Art Making Day
  • Museum
  • Science Experiment Day
  • Build Go Karts
  • Build Tyre Swing

  • Build a Tree House
  • Photo Booth
  • Swingball competition
  • Cardboard Box Creations
  • Soft Play
  • See Fireworks
  • National Trust
  • Family Funday
  • China Town
  • Adventure Playground 

  • Games Night
  • Catch Bugs
  • Build a Bug Hotel
  • Build an Ant Farm
  • Build a Bird Feeder
  • Fly a Kite
  • Tie Dye
  • Library Reading Challenge 
  • Magic Show
  • Circus

  • Visit a Flea Market
  • Brighton for the Day
  • Frisbee
  • Paint with Watercolours
  • Feed Ducks
  • Bike Ride (scooter accessible path)
  • Make Cards
  • Sports Day Races
  • Throw Paint Bombs at a Large White Canvas
  • Make a Movie/TV Show
  • Do a Talent Show with Friends

  • Mini Golf
  • Go to Inflatable Fun at parks
  • Visit Caves
  • Go on a Bear Hunt
  • Coloured Shaving Foam Twister
  • Make Pizzas from Scratch
  • Pick Blackberries
  • Dinosaur Park 
  • Make a Puppet Show
  • Make a Band/song

  • Build a Fortress
  • Explore the Woods
  • Video Games Night
  • Make Something You Can Wear
  • Make a Treasure Map
  • Make Rock People
  • Play in the Rain
  • Go Rollerskating
  • Have a PJ Day

  • Get Icecream from an Icecream Van
  • Play a Memory Game
  • Go on a Train
  • Go on a Bus
  • Watch a Sunset
  • Go to a New Park
  • Make Garden Potions
  • Make a Fairy Garden
  • Music and Glow Stick Party at Dusk
  • Make Friendship Bracelets

  • Play Pooh Sticks
  • Visit 100 Acre Woods
  • Grow Cress Heada
  • Go on a Boat/Canel Tour
  • Run Through Sprinklers
  • Chalk Creations
  • Sand Art Competition
  • Play Hide and Seek
  • Make Lemonade
  • Watch a Thunderstorm

  • Play in a Mud Kitchen
  • Take a Road Trip
  • Random Act of Kindness
  • Paint Rock Pets
  • Play in a Creek/Water
  • Collect Seashells
  • Go on a Nature Walk
  • Go on a Nature Hunt
  • Start a Nature Treasure Collection
  • Visit a Historical Site

  • Play Frisbee
  • Paper Aeroplane Contest
  • Pick Fruit
  • Roll Down a Hill
  • Plant Some Flowers
  • Visit a Carboot Sale
  • Go to a Amusement Park
  • Go to a Sweet Shop
  • Home Spa Day; Paint Nails, Face Masks

  • Go Shopping
  • Decorate 
  • Go Out for Icecream
  • Each have a Disposable Camera and Document the Day
  • Dress Up
  • Make Lanterns
  • Go to a River

  • Go Pottery Painting
  • Keep a Scrap Book of the Summer
  • Face Painting
  • Makeovers
  • Visit a New Town
  • Paint a Self Portrait
  • Visit an Animal Rescue Center
  • Go to an Aquarium
  • Go Exploring
  • Go to a Vineyard
  • Play date with Friends
  • Write a Letter for an Elderly Relative
  • Treasure Hunt in Charity Shops
  • Go to the Cadburys Factory

  • Go Pond Dipping
  • Have a Crazy Hair Colour Spray Party
  • Listen to Live Music
  • See a Show
  • Put on a Dance Show
  • Make own Picture Gallery/Exhibition
  • Make Suncatchers
  • Make Nature Prints
  • Press Flowers
  • Play Tag in Wild Long Grass

  • Do Shadow Animal Displays
  • Origami 
  • Read Books Together
  • Dog Walking
  • Lego land
  • Make up photo albums
  • Chessington
  • Peppa Pig World
  • CBeebies Workd
  • Thomas World

  • Diggerland
  • Ride on a Steam Train
  • Make Something for the Neighbours
  • Donate to a Homeless Shelter
  • Go out for Breakfast
  • Eat in the Garden
  • Have Breakfast for Dinner
  • Watch Planes Take Off
  • Build a Teepee
  • Do Different Country Themed Days
  • Have a Pirate Themed Day

And there it’s all in rainbow colours just because rainbow colours make me happy, probably even more so then lists. Now to put it down somewhere and forget about it and make brain space for the next List plan


Everything feels so strange. So surreal. My uncle said that death is supposed to be a natural part of life and yet it feels like the most unnatural thing to see, and it’s so true.

There’s an emptiness like a vacuum, an invisible black hole; sucking in all the emotions, all the reality of life. It feels as if I’m playing a part in a really bad movie. I’m unsure of the script, I don’t know how to act, how to do things, how to think.

It’s as if all time and space had spun out of order; I’m frozen in a point in time unable to take in anything else around me and yet can see life rushing past. How can everything continue as it always has, time keep passing, when it feels like everything has stopped and nothing makes sense any more. 

I can see myself doing normal day to day activities but it feels like a dream, like I’m sleepwalking through the day just waiting to awaken again. 

Every time I catch sight of her photo, or reminded of a memory of her I’m suddenly winded, all my breath is gone and I’m never sure if il be able to breath again. My mind plays over and over the feel of her hair, the smell when embraced in her hug, the sight of her elegant hands moving over the piano. How can she be gone? How is it possible I will never be able to touch her, see her, just be in her presence again? 

I constantly yo-yo between wanting to hide all objects of hers that bring back painful reminders that she’s not here to use them anymore, and wanting to touch everything that was hers, immerse myself in everything that was her just in the hope of feeling just for a second as if she was still here to hold and love.

Yo-yo between wanting runaway and escape to somewhere that I can hide and pretend loosing her never happened, with wanting to bury myself in her room in her blankets, curling up and never having to say goodbye. 

I miss her more then I ever thought possible. It hurts more then I ever believed it could. I wish I had spent more time with her, talk with her more, appreciated more every moment and memory with her. I wish I had told her just how much I loved her every day and made sure she knew how special she was.

I just wish there was a rewind button so I could relive every day, could take away all moments of sadness for her and made sure she was happy, truely happy.

I don’t know how to say goodbye. I don’t think I’ll ever be ready