Living with an invisible chronic illness: the truth and the tears. 

I’m not going to be specific to any particular illness here as I feel that this covers a very broad range. I myself have been in this position for the past two and a half years so this is of course, from my own point of view as I have been and am still living it.

Living with any ongoing illness is going to be hard, it changes the way you live your life whether you want it to or not. What makes it ten times worse and much harder for those on the outside to understand is when that illness is invisible. If I had a £ for every time someone said “but you look really well” I would be filthy rich by now! It seems much harder to try and explain to friends and family about why you can’t do the things you used to, why you aren’t better yet and how come you look ‘normal’. It has crossed my mind that sometimes I’m not believed but I can’t control other people’s opinions so I try not to think about it too much. After all, it’s much easier for people to ‘get it’ if you have something obvious like a broken leg. I’m very fortunate to have brilliant friends who are always ready and willing to bail me out if I need help with anything, some have been helping out with school runs for years! I’m also very lucky to have one particular friend who is in the same sort of position as me health-wise and we often use each other to sound off and have a little moan about how crap it all is. I think if I had the same conversation with my other friends they’d be extremely depressed by the time I’d finished and would avoid me like the plague ever after!

OK, so let’s talk about your social life. Ha, what social life!? Something that I have found is that people stop inviting you…to anything. If you’re unlucky enough to be stuck within the same boring four walls for most of every day, day in day out because your illness just will not allow you to be buzzing around like you used to, you’ll know this one. Everyone suddenly assumes that it’s not worth inviting you to anything because you’ll be too tired or too unwell to attend. It’s not their fault, they don’t realise, and if you’ve never been in that position you really cannot imagine what it is like. Can I just say, if you know someone who has a chronic illness please invite them to everything, even if they say no most of the time. There really is nothing worse than being excluded on an assumption, we might say no but we still like to be asked. Even a quick drink down the local and seeing some different faces can make the difference between a crappy week and an awesome week. To everyone on the outside it seems minuscule and unimportant but to someone who’s going absolutely stir crazy at home it’s a huge thing! It’s mentally uplifting and breaks up the pure evil monotony that attaches itself to your very existence when you’re unable to live life like you used to. I have found that nobody gets this, even those closest to me. They may say they understand what it’s like but they really and truly do not. They can’t unless they’ve lived it. Again, this is no fault of their own, it’s just the nature of the beast. 

 I believe that there is a period of mourning when your life suddenly changes, mourning for your old life and how things used to be. There are too many emotions to experience, anger, frustration, self-pity, asking “why me?” Well actually, why not me? Getting used to a ‘new normal’ is damn hard especially when the mind is still super-willing but the body just doesn’t want to know. I look at my friend’s social media statuses when they have a headache or a cold which they’ve (as usual) self-diagnosed as flu and I think to myself “you have no idea, no clue at all” and I envy them their headache or their cold. They’ll be back to normal next week, I won’t.

So, sometimes you inevitably reach a point where you’re a bit more frustrated than usual and think ‘stuff this’ and you unwisely try and go back to doing things like you used to. I’ve tried pushing myself more times than I care to remember but the results are sadly always the same. Mind over matter doesn’t exist in this instance I’m afraid. Your body just can’t do what it used to no matter how determined the mind. I have found a wonderful outlet for my personal frustrations though in photography, something I’ve always loved but find that I have more time for these days since having to give up work. Of course I always spend too much time (and money) on Amazon trawling for snazzy new camera accessories but it keeps my mind busy and it’s something I can do at home at any time.  I do believe that it is important to have that outlet and I’m actually building up my skills as a photographer at the same time. 

I see photography as my silver-lining, every cloud has one right?

Carotid artery dissection: I hadn’t even heard of it.

I didn’t know how to start this one so I’m just going to write it as it comes.

In July of 2015 my life changed drastically, maybe forever, I don’t know. I sincerely hope not. There I was on a normal Friday morning getting the kids ready for school and getting myself ready to go to work after they were safely deposited in their respective places of learning. I had woken up that morning with a headache and a feeling like I was about to come down with something. My eyes felt a bit weird as though there was something pushing at them from behind and I was ‘seeing stars’ a little. With it being a busy day I didn’t really have the time to think about it too much and me and my man were off to a hotel that night so there was a lot to do.

As soon as the kids were at school I drove straight to work. I had my own cleaning business and was building up a good amount of regular clients, I only had one to do on this particular Friday though as my other Friday lady had requested a different day the following week due to her family visiting. I completed the work as usual although I wasn’t feeling 100% and at the end of the job I drove home to pack my overnight bag in readiness for staying at The Grand Hotel in Brighton, one our favourite hotels. The headache was persistent as was the flashing lights and pressure behind my eyes. By about 3pm, when I was renewing my makeup ready for the drive to the coast I noticed that my left pupil was tiny and it wasn’t reacting to light at all. My eyelid on that side was also drooping slightly. I can’t explain why but I wasn’t actually too concerned about this. I did have a quick ‘google’ which threw up articles on Horner’s syndrome but I didn’t read that far into it to see what some of the causes could be.

I continued to feel ‘off colour’ for the trip down and throughout the evening. We went to a lovely Chinese restaurant for our evening meal but I had lost my appetite and hardly ate a thing. Back at The Grand a bit later I wasn’t able to finish my cocktail in the bar lounge (very unusual for me!). That night, sleep didn’t come easily and the headache worsened. Breakfast was hardly touched and the headache was still going strong along with the eye pressure and flashing lights. After another google session it looked like my problem was down to sinus trouble and we walked into town to find a chemist. After a brief discussion with the chemist they agreed with the idea of sinus issues and sold me some tablets.

We found a cafe and sat down for a while, by this point I was starting to feel worse, I couldn’t focus on much at all as the visual disturbances were increasing in intensity. Needless to say, the rest of the day passed in a bit of a blur. Literally. We returned home late that afternoon.

The next morning, Sunday, nothing had improved and it was clear something was awry. It was agreed that I should go to the local hospital which deals with minor injuries for a professional opinion. After a lengthy assessment and phone calls to an optometrist I was sent to A and E. I was subjected to X-rays, a CT scan, blood tests and other observations and at about 9:30pm I was discharged with a diagnosis of Horner’s syndrome and was told that they couldn’t find a reason for it but I was reassured it should pass on its own. Basically, Horner’s syndrome is the name for a group of symptoms, headache, drooping eyelid and constricted pupil.

I’ll always remember the huge hug my man gave me at that moment as he said ‘thank god!’.

Not long after getting home from the hospital my mobile rang. It was a consultant at the hospital who had just read my notes, he insisted that I return to the hospital the next morning for an MRI scan. He didn’t say why.

That night I felt no better but was able to get some sleep.

The next morning, Monday, I got the kids off to school as normal and drove myself back to the hospital to await my MRI. I spent hours sitting in various waiting rooms before having an MRI, then a CT angiogram. More hours were spent waiting around before I was finally called in to see a doctor to view my results. I was not expecting what happened next. I was sat down in front of the doctor and she told me that I had a tear in my carotid artery and that it was life-threatening. She told me I was being admitted immediately. I’m not sure exactly what was going on in my head at this particular point but I remember protesting that I had to get home for the kids and that I couldn’t possibly stay overnight in hospital as I had to go to work the next day. Thinking about it now it seems a really stupid thing to say but I said it.

Next came the phone calls that had to be made to family. First I rang my other half to let him know, he left work straight away, he was working in London at the time, quite a drive away. I had been messaging one of my daughters throughout the day while I’d been waiting around, she was on holiday and was on her way back from Italy but had a few stops to make in various towns along the way so wasn’t due back for a few days. By the time I had been told the bad news I had completely forgotten that she wasn’t in the country even though she had just said she was on her way and would be back as soon as possible. I asked her to let my Mum know as I was called into another side room to be pumped full of a high dose of aspirin to dissolve the blood clot that had formed in my torn carotid artery.

I was at serious risk of stroke if the blood clot broke away and travelled up my carotid artery to my brain. I wasn’t allowed to leave the department I was in just in case anything happened to me so had to just wait for my family to arrive. I was admitted to the acute medical unit and shortly afterwards the headaches began to get worse. I’ve never felt pain like it, give me the pain of child-birth instead any day, it was horrendous. Morphine and codene were now my best friends. I spent the next couple of weeks in the stroke ward in extreme pain and experiencing massive sensory overload. I couldn’t bare to be under the bright white lights of the ward and thankfully was able to spend some of my stay in a side room with the lights off and the blind drawn against the bright summer sunshine. Every little sound seemed to be magnified a million times and I was constantly dizzy. I was told by my neurologist that I should lay still to give my carotid artery the best chance of healing. Carotid artery dissection is such a rare condition that most of the doctors I saw had never treated a patient for it before. The hospital itself had only ever seen one patient with the condition, a lorry driver that had been involved in an RTA and had torn his artery due to whiplash. After almost two weeks I was pleading with the doctors to let me return home, the hustle and bustle of everyday hospital life was making me feel worse and I was convinced that I’d feel so much better at home. They let me go and I was then able to start my recovery in the relative peace and quite of my own home.

The headaches began to lessen although two and a half years on I still get them if I do too much and I’m still left with sensitivity to light and noise. I’ve not yet returned to work as the fatigue that remains is so severe I am exhausted after only the smallest of activity. I have been subjected to many tests since my diagnosis but to no avail. No one knows what to do with me, there is no treatment and my artery is now 100% blocked. Sometimes it feels like I am being sent for tests purely because the doctors haven’t a clue but they want to be seen to be doing something.

Fortunately, I have found a couple of groups on social media where other CAD (carotid artery dissection) sufferers can share their experiences and I have to admit it’s been of more help to me than any doctor. Just being able to relate to their experiences is such a huge thing. I’m only now beginning to accept my new ‘normal’ although it’s very hard sometimes when the mind is so willing but the body just can’t deliver.

I know that I am lucky to be here and I’m aware that it could have been a lot worse. Had they not diagnosed me as quickly I would have ended up having a stroke and then who knows what would have happened.

It’s a small world: The art of macro photography.

Where photography is concerned there are so many genres to choose from and I don’t limit myself to just one or two. I have to admit though that macro photography is one of my favourites and I try to dig out my 180mm 3.5 as often as I can. There’s something special about the world of super-close imagery and how usually boring every-day items can become interesting and quirky. The above image was shot for an Open University photography course that I did a couple of years ago. I got the shot simply by piling up some old watch parts on a circular mirror about the size of a cup coaster and placing it on a windowsill bathed in lots of natural light. This image has even made it to the bedroom wall as I had it made into a canvas, I’m proud of that one!

This next one was equally as easy to set up. A couple of strawberries, some natural light and a 00 gauge workman made for miniature train set layouts and you’re good to go. The possibilities are endless and you can really let your imagination run wild to get some awesome and really creative results. I created a similar image using a digging man and some coffee granules.

Here is another of my favourites using a peacock feather (obviously!) I love how macro allows you to see ordinary items in much more detail and makes them look totally different. Macro work is really good for creating abstract images too, you just need to look around you for ideas.

This last one is a bowl of bubbles. Again, easy to do. A splash of washing up liquid added to water, blow into the water through a straw and hey presto, bubbles galore! This one was a little bit trickier and I had to keep changing the focus as bubbles were constantly bursting.

I’m by no means a pro at this and there are far more skilled ways of using macro photography. Such as, taking many images and stacking them on top of each other using specialist computer software. I do this for fun (and it is fun!) give it a go if you can and see what you can come up with!

All images are owned by myself.

Water beads time lapse.

As promised I’ve created a short time lapse video to show how the water beads grow once they are immersed in liquid.

The video is just over a minute long but in real time it took closer to two hours for the beads to expand until there was no more water remaining. I did have to top up the water mid-way which unfortunately is noticeable but hopefully doesn’t detract from their amazing transformation! Enjoy!

Tammy’s Thai review!

8CE78832-A146-464A-BB3F-C65CC495BDF3OK, so this is only going to mean anything to readers that are local to here (Surrey, UK) or happen to be visiting but it’s that good it just has to have a review.

We have visited Tammy’s about half a dozen times and every visit has been great. We had heard good things about this place and were passing one Saturday lunch time and decided to give it a go.

Now if you didn’t know about this restaurant you could quite easily drive straight past it without knowing it was there. That would be a crime!

From the outside it looks quite unassuming and like it once used to be a pub. It’s on quite a busy road (A22) in Newchapel, Surrey and quite honestly is a hidden gem!

AA85BD66-BDD6-43C2-8EA0-275085A92032When it comes to Thai food we know what we like and we don’t often stray from our absolute favourites. For starters, we ALWAYS order satay chicken skewers, salt and chilli squid (shown above) and tempora prawns. Needless to say, these three dishes are devoured within just a few minutes and are thoroughly enjoyed every single time. Each sumptuous starter is perfectly cooked and gorgeously seasoned and somehow (I don’t know how) they get the batter so perfectly crispy it is actually to die for. I can honestly say the same about every dish that we have had here. Many, many compliments to the chef!

4B671FA0-7BB7-490B-9955-6FB755EECB53When it comes to the staff at Tammy’s well, what can I say? They are all wonderful and very friendly and extremely attentive. You only have to be watching them for a few minutes to see that they are constantly checking tables to see if the diners need more drinks or if empty plates need taking away. And nothing is ever too much trouble, they are always eager to please.

Did I mention the decor? Inside the restaurant is nicely decorated and furnished with pretty fairy lights, orchids and  lots of Thai stuff (the tables are amazing). There are always little vases containing fresh flowers and tiny lit tea lights on each table, it really is the small things that make a difference. The tables are not placed too close together and even when at full capacity the restaurant still has a pleasant atmosphere.

1EE70510-98D5-4228-9C2C-B2288A610A71The menu I’m sure has something for everyone, whether  you like it spicy or not (I don’t like it too hot!) and when you get your bill you get a little bowl of sweets to munch on (smarties, jelly beans and mints). What does come across strongly is that the prices here are extremely reasonable (I don’t want to say cheap but it is compared to a lot of places we have been to!) I honestly think that they are not greedy and know that they will get bums on seats by simply providing a great service and wonderful food. It sure sounds like a recipe for success to me!

A tilted view.

If, like me, you love taking photos and you fancy trying something a little different I would strongly recommend giving tilt-shift photography a go. Now, taking photos is cool anyway but just imagine if you could make everything look tiny, like it was from a toy town. I first tried out my tilt-shift kit at my local railway station with very pleasing results and it was surprisingly easy to do. You don’t need any mega-expensive gear to start but just for example’s sake I used my Canon 5D mk IV with a Lensbaby Composer Pro with Sweet 50mm optic. You really don’t need a kit like this though and can use small and medium format cameras. The lensbaby was around £250 and does the job more than well enough for my needs but you can easily expect to pay upwards of £2000 for a pro-grade tilt-shift lens. Now for the tech bit. The tilt-shift comprises of rotation of the lens plane relative to the image plane (tilt) and movement of the lens parallel to the image plane (shift). So, you rotate and point the end of the lens towards your desired subject whilst keeping the camera body still. To get my images I placed myself on the bridge that crosses the railway line and got some fantastic shots with ease. It really is as easy as point, focus and shoot, moving the end of the lens around to capture what you want to be the main focus of the image. The lens beautifully blurs everything surrounding your subject and gives it the ‘toytown’ effect.

Although being a keen photographer and preferring to use my tilt-shift lens with my DSLR there are many apps available that will give a previously standard image the same effect. You can also edit your regular photos with photoshop and other similar software to give them the miniature look. It’s on my bucket list to take my kit to London and take some photos from The Shard, The Monument and some of the bridges across The Thames.

Crafters take note!

2C8DB97C-85C2-4E34-A725-89C76DFA2A65Here it is guys and girls, an old craft renewed! If you’re of a certain age you’ll have heard of macrame and might even have had a funky string plant hanger about 25 years  ago nestling a spider plant in its midst. Well, it’s back with a vengeance.

During a recent visit to Etsy, the crafter’s site where anyone can join and sell their creations, I found that macrame is making a big come back. And it looks better than first time around! There are books galore on how to use this fab rope work and although it looks extremely fiddly and complicated it’s easily mastered by anyone with crafty hands and a bit of patience. I might even have a go myself! With supplies easily sourced on the good old internet this could be a lovely hobby for those lazy Sunday afternoons. I’m off to go online shopping!

27E5E57E-FF3B-4F2D-ADF6-83B1A7A185BEPhotos shown are owned by @moderncraftbykirsty found on both Etsy and Instagram.

Water beads, new craze?

This could well be the new kids craze to hit town. These tiny little beads have been around for a while but I only became aware of their existence a few days ago after seeing an online video. These polymer-based gems are a pretty cool bit of chemistry that kids (and adults) can have some super cool fun with. They start life as brightly coloured, hard beads that look quite unassuming. Until….

Once water is added the magic begins. Within about 20 minutes the beads start to look more opaque and just a little ‘fluffy’ around the edges and by the time 2 or 3 hours have passed they have grown to the size of a pea. Still retaining their perfect spherical shape and looking more like transparent glass beads their transformation into soft, bouncy little jelly balls is complete. I have to say it’s very satisfying to just plunge your hand into a big old bowl of these babies and squish them around for a bit (stress toy anyone?).

As well as looking pretty and feeling great they do actually have some practical uses too. As they retain water really well they can be used instead of water in flower vases and in soil to help keep plants healthy. They are non-toxic but obviously they shouldn’t be left anywhere where small children and pets can get hold of them as ingesting them would not be clever!

I’m happy to report that my first batch of beads is still in tip top condition in a vase (without flowers) 3 days on and no moisture seems to have dissipated as yet. And I plan to create a little time-lapse video in the next few days to demonstrate their transformation. The beads do eventually return to their original state once the water has evaporated and they can be activated again and again by adding water.

Just for info, the little bottle pictured held 50,000 beads and cost about £7, I used just a small handful for my first batch.

I will be putting them to good use once summer arrives by filling the paddling pool!

And so it begins…

Be gentle with me, I’m a total newbie at this!

I have made the monumental decision to start this blog so I can share my life, experiences and some cool photos that I shoot along the way.

Firstly, let me tell you a bit about myself. My name is Julie and I live in the United Kingdom, I have a family, dog and all the usual stuff that goes with such things. Two and a half years ago I suffered a carotid artery dissection and it’s safe to say that I haven’t been the same since! More about that in due course. I invite you to join me in this journey we call life and hopefully you will find my blog interesting and occasionally informative.pexels-photo-585260.jpeg