How to put a sleep pattern in place - 10 DAY SLEEP SCHEDULE

Hi, quick post today!

In my last post I mentioned a sleep schedule that I had been given a couple of years ago when I was at the sleep clinic. It is a 10 day plan designed to push your sleep forward two hours every day, so by the end of it, you've had an 8 hour sleep and woken for 7am.
Christmas is only 15 sleeps away, so if you're struggling with your sleep pattern at the minute and worried that you'll not be awake for the big day, this may be able to help you out!

Spoonie tips for surviving the festive season!

I adore Christmas but thinking about my actual plans makes me feel the same way as I do when I think about going on holiday... Extreme excitement but even 'extreme-er' anxiety. I think every other spoonie out there understands me when I say that. As exciting as it all is, it is a very busy, sociable time and to me; that sounds rather daunting. So I'm going to share a few tips with you on how I'll be making sure my Christmas runs as smoothly as possible!

Gift shopping!
Before you can begin to worry about how you're going to get through the Christmas party, you have to worry about the secret santa exchange that will be happening there!
Shopping in December is a nightmare for anyone but for us who are in pain just walking around the house, the thought of trying to manoeuvre 'round the eager sale enthusiasts, is more of a night-terror..
So the obvious solution is online shopping! I sometimes think 'I can just do a few shops, it will be nice to be around the festive spirit' and then I regret ever thinking that when I'm in bed, barely able to move a limb. So if you're like me, don't risk it, get all your shopping done online. There's also a lot more sales online, especially around this time of year, so as long as you can make it out of bed and to door; you're sorted!

Sleep!
Prioritise sleep. Sleep plays a big part in my day, if I haven't had any my symptoms are often worse than usual and I find it a lot harder to get through the day. I would recommend a strict routine the week before xmas, not that it always works but a good amount of sleep and rest is going to help a lot!
I have a sleep schedule that I was given at the hospital a couple of years ago that is helpful for temporarily putting a sleeping pattern in place, if it would be useful for you to see, let me know and I can type it up and put on my Facebook or Twitter!

Don't over do it!
Don't over-book your time, it's ok to say no. Festive gatherings; spending time with family and friends sounds great but sometimes if you've already had a 'busy' week, for your own good, you're better to kindly decline. I've made the mistake many times before of over planning, when I'm having a good day I sometimes forget to think ahead and I try to take on the world and then again, I end up back at square one! So even if something seems manageable at the time, we've all learnt by now that even the slightest task can come back to bite us in the ass, so please do treat yourself extra delicately this Christmas and don't ever be afraid to ask someone else to step in and help you out.

Take a break!
Take a step back out of the crowd. Socialising is one of those things that catches me off guard, one minute I'm laughing, happily chatting away and then the next, my energy has plummeted and I find it hard to carry on the conversation, which at that point I'm better to politely take myself out of the situation. So if any point you feel like you could do with disappearing from a busy atmosphere, don't be afraid to take a moment out, I'm sure that your family will understand and won't miss you too much!

Stay warm!
I don't know about you but my body doesn't act well with the cold weather, I have flare-ups from walking down the fridge aisles in Asda...
Most chronic pain sufferers symptoms worsen throughout the winter, so layer up and keep your fingers and toes snug! If you're traveling, whether it be a 10 minute drive or across country, take a blanket with you, keep your body warm and comfortable to avoid pain increase. Hot water bottles are also my best friend, all year 'round but especially in the winter, they're a good thing to have most nights but they're also a jolly good traveling companion!

Pre-ready!
Something I do to save a little energy on the day is I start getting ready the night before... Which sounds outrageous but I don't mean that I go to bed with my false 'lashes on. I find it helpful to style my hair the night before, so that in the morning, I only need to brush my bed head out and go over my already, almost done hair! I also break down my tasks in the morning when getting ready, so I'm not just sat at my table for 2 hours straight. I could paint one eye on, go have a drink, come back and do an eyebrow and so on... If you already have manageable hair that doesn't take long or you're a man... then I suppose this isn't a useful tip for you but for me, if I were to wash, dry and style my hair as well as get dressed and put my face on in the morning, I'd have to crawl out of the door.

If you have anymore tips for me on how to keep my feet on the ground throughout this busy time, please do let me know!

 I wish you all the best health and I hope that your Christmas plans can be achieved (and that you don't suffer too horribly afterwords!)

           

SELF HELP & ADVICE FOR YOUNG PEOPLE - SELF HARM

Today I'm writing about a sensitive subject which I never thought I would be publicly writing about, but here goes! SO NERVOUS

I recently found some leaflets and NSHN printouts in the back of one of my drawers that I had been given at the hospital a couple of years ago, they were purposely pushed into the depths of my drawers as at the time I was given them, I had no plans to actually read them. I remember flipping through them pretending I was taking it in because my psychologist was watching, while she wrote up my safety plan. 

Although I don't think I'm quite prepared to talk in depth about my own experience with self injury, I do think that with my knowledge and my handy dandy leaflets that I am in a good position to offer advice to young people who are dealing with depression and/or urges to self harm. 

I know maybe if you are in a dark place and experiencing unpleasant thoughts and urges at this time you probably will feel a little reluctant to read on, maybe you're hesitant about accepting or asking for help or you maybe you think you have everything under control and are unaware that you need some form of help. But if this is this case, I'll say that there will be a moment when you're pushed too far and you are left with no other option than to tell someone and accept their help in hand and although it might seem like an impossible thing to do so, it's the right thing to do. Listen to that moment when help is screaming you in the face, don't chose to ignore it because there is only so long before things get out of hand and it is too late.

Here is how I started to get help and some tips I would have for others…

Although I do want to keep my own experience as brief as possible as I'm not comfortable in talking about the in-betweens, I do want to share with how I got to the 'getting better' stage!

The day that I took the step that turned everything around for me wasn't a day I planned, I didn't wake up one morning and think that 'today is the day I tell my parents and ask for help', I don't think I ever anticipated that I would go so far and that it turned into something I genuinely needed help for. But on this particular day I took things a bit further than I intended to and once I came home with my arm bandaged and taped, I knew that was the moment that I needed to tell my Mum what was going on. Telling my Mum has to be the most difficult thing I've ever had to do and I wish to never have to see her look as heartbroken as she did when she realised what I was trying to tell her. But from that day, things got better, I can't explain it but everything became clearer and I wasn't the lonely girl crying on her own while everyone else sleeps then wakes up the next day none the wiser, anymore. Despite the few especially tough weeks that came after, I did what I had to and attended the meetings and appointments I needed to because I knew that after all, after taking the step in telling someone, there would be a time where that part of my life would soon be something of the past.

MY ADVICE FOR YOU 

Work out your triggers; find what kind of thoughts, feelings or activities encourage you. 

Here are some things that I would suggest doing to distract you

FAKING SLEEP WITH MAKEUP...

Sometimes no matter how little sleep you've had (or not had), you still have to get up and do things. 

When I'm super exhausted the last thing I think about is applying makeup but if I need to leave the house to do something that involves associating with the public.. I like to avoid the ‘are you ok?’ question just because I'm not wearing makeup and my dark under eyes are out in full force that day. As I've talked about before here, people often think the way you look corresponds with the way you feel and as much as that can be a negative thing, sometimes it's good to avoid the questions because of your tired face!

So when I want to look as awake and fresh as possible there are a few things I make sure I do with my makeup. 

POST APPOINTMENT BLUES

Today I'm having those post appointment blues...

Over the past 5 years I have attended plenty of hospital appointments and meetings with different people to discuss 'what's wrong with me', which means I have had to listen to a lot of people telling me things about my body, my life and the limits I have to put on myself. Which is why whenever the day of an appointment comes I don't usually think much about it, I'll wait in the waiting room with no expectations, I know that I'll probably be leaving before long with no new knowledge, no progress and no magical medicine that's going to make everything go away.

I somehow always fool myself into thinking that this time, I'll not be leaving the appointment any more emotionally scared than I was when I arrived but I'm always proved wrong! 

When my Mum is talking to the doctor, for me to sit there hearing others talk about my life, I always think that it's not going to bother me, as if I'm discussing my condition with my family or anyone else, I'm totally fine, I feel accepting about the way my life is now. 

So even though it happens most appointments I still end up feeling a bit shocked when I start to feel myself choke up. Everything they say I've heard before, it's not as if they're telling me some shocking facts that I don't already know, I know that I can't get up in the morning, go out to work like everyone else then sleep that night and then do the same everyday after that.. But there's something about hearing it in from a professional or in a professional environment, like the a doctors office or a career advisers office...that really hits a nerve!

Maybe it's because these are the places you usually go for answers; to find out about all the different options there are to treat your symptoms, to get advice on where your life is going... So when you're hearing the opposite from these people and you leave with no positive outcome, it can be very disheartening. 

(And for me, it leaves me needing a little cry once I'm back in the car)

Let me know how you feel after your hospital appointments.
Do you always think that nothing else someone can say will affect you but it still ends up doing so?
Or has anyone out there become truly invincible to hearing doctors tell them there's nothing they can do, do you manage to leave without wondering what the point is anymore?


It's the next day now and I'm all good, I'm over it and happy with life again.. Though I'm sure if I have another appointment I'll end up back at square one for the day until I realised that yes, things were said out loud but those facts were things I already knew, so nothing has actually changed.

BLACK DRESS DAY FOR SEVERE ME.

Raising awareness for severe M.E. with selfies in black dresses… sounds a great idea! Though I did miss the day… I’m stuck in quite a rough patch at the minute and I wasn’t able to do anything yesterday but I’m sure I can get away with one day late… any day is a good day to raise awareness, right? As I'm a bit late I figured I had to step it up with my photos which may have resulted in them being a little harsh... but it can be a harsh reality.

I read about the black dress selfie campaign here on sallyjustme.blogspot.co.uk, the idea was to raise awareness for the people suffering with severe M.E. by posting a selfie in a black dress on your social media. August 8th, this day would mark the 41st birthday of Sophia Mirza. Sophia sadly lost her life to M.E. in November 2005, at the young age of 32. Many others are suffering in the dark with this terrible condition and are often left with an extremely low quality of life.

Read more about Sophia Mirza's story here 

I myself have suffered with M.E. for the past 4 years and I still don’t fully understand it, I just have my own experiences to go by. And from that I can tell you what a dark, lonely place your world can turn into, feeling trapped in your own body, opening your eyes to see the same four walls, day in day out and having to squint your eyes at the sunlight showing through the gap in your curtains… But not one of my stories could ever touch on the devastation that severe M.E. brings into peoples lives; being ill 100% of the time,being confined in their bed unable to move or function, having to be tube fed, being so hypersensitive that they're unable to see anybody, having their life taken away from them yet still being misunderstood.

Please take a moment to raise some awareness, whether you share this post, retweet a black dress selfie on twitter, write your own blogpost or post your own selfie (a bit late like me)... 

The more people that are aware of this nasty condition, the better!

Know that you're never as alone as you feel.

My Polagram prints!

Hi! 

Just saying a quick hello before my unconscious mind takes over for the night.

Yesterday I received my photo prints from Polagram, which is a great app I discovered through a twitter advertisement! I don't know if this is already a popular thing that I'm a bit late to the party with or if it's a pretty new app but it's really practical for me. Me and my friends, or should I say; me and my friend Sophie enjoy taking photos when we get together but it soon fills up the memory on my phone and I can't go deleting my Kim Kardashian game to clear some space now, can I?... So it make sense for me to print off my photos, so I can clear them off my phone and seen as I'm much better at online shopping than I am 'outdoor shopping', what a delight to hear that I can get my photos developed straight from my phone's camera roll then all I have to do is wait for them to arrive at my door! (It took 1 week)

The photos come with instructions for this origami fox too, adorable.

I ordered my prints in a polaroid style, although there are many other styles to choose from, counting phone cases. Though I'm not one for spending £20 on a phone case but if you are; cute idea!

I am really happy with my photos, they're such good quality and it was really affordable, I'm already ready to order another lot of them!  

If you want to use this app, it can be downloaded on the app store or google play, you can also use my referral code from my order which will give you free credits; free photos!

PGU2HJ91

Happy developing! :)

How I've been spending my time.

Whenever someone hears that I spend most of my nights awake, they ask what I do for all that time and to be honest, the night goes pretty fast for me, well that is until it gets to 5am then from then the night/morning starts to drag, but for the rest of the night, I spend my time watching TV, reading, trying to get a blogpost wrote or trying to learn another language...

Ok, so the last one, I have to emphasise on the trying. While I was recently holidaying in Spain, me and my friend felt rather out in the wild when we were around all the spanish speakers but for most people it is compulsory to English while in school, which I guess is why we're always able to get by while on holiday but I only managed to grasp some basic French during my time in school. So after spending our nights meeting new people then trying to put together their sentences, we figured it wouldn't hurt to know a spanish word or two! Now that I'm back home I'd love to be able to say that I'm taking some intense spanish classes but I'm really not... I just downloaded a few apps onto my phone to get me started and I've really been loving the app Duolingo, the way it's designed and set out is great, it feels more like a I'm playing a game rather than doing something educational. I also just discovered their website which is just as great and they have a discussions page on there, so when I see everyone on a crazy-good level while I'm trying to work my way through level 5, I have to say; it is keeping me motivated! Intro to Duolingo.

Let's talk about Catfish: The TV Show! 

I've been on holiday!

Hello! Welcome. I hope you're doing good.

Last night I got to sleep before midnight, I cannot remember the last time I fell asleep at a reasonable time. I must have fallen asleep around 11 and it is now 4am, I woke up about an hour ago and I was determine to get back to sleep but I was in a lot of pain and my mind wouldn't switch back off, so here I am, awake, waiting for my legs to wake up too! I guess 4 hours sleep is better than none.
This gives me some time to write about my holiday, if you follow me on my social networks or have read my pervious post, you will know that I have recently been away, I've been back over two weeks now but I've only just being able to hold some concentration long enough to write a new post. The first week back I spent trying to recover but I admittedly over did at any chance I felt any better, so I spent my second week, sleeping and unfortunately missing the lovely sunshine everyone has been excited about!
So my holiday, I mentioned before that I was pretty nervous about going away, mostly because I know how I feel on bad days and knowing I could be feeling that way miles away from the comfort of my own home was quite scary. I did however, make it through the week and I had a great time but on the first night I did admittedly have a 'this is going to be the worse week of my life' thought, very dramatic; I know!! But let me explain, we had started traveling at 02:30 on the Monday night / Tuesday morning, so I of course hadn't slept yet, I had just been in an anxious panic all day after not getting much sleep the night before. So when it came to setting off I told myself that everything would be fine, that I'd sleep on the way to the airport then on the plane and then I'd be able to get on with the day, then I could at least start the week with some rest. But I was a fool to think I could just drop off on the plane like everyone else could do, so easily. We arrived in Spain around noon on Tuesday, that afternoon I tried to have a nap but as absolutely exhausted as I was, my brain just wasn't switching off, so frustrating! I did end up getting about 20 minutes sleep before I had to force my body back off the bed and get on with the day. I honestly cannot even remember what we did on the first day but I do remember leaving the hotel room that night to try and walk out my anxiety but it didn't quite happen as smoothly as I'd of hoped, so after some, a lot... of tears and hyperventilation in the hotel corridor, I returned and I sat up in the lounge part of the room, so I wasn't disturbing my friend and I watched Miranda on my iPad to try and distract myself while I was calm enough to finally sleep.
I think it was the knowing that I needed to sleep that night, I knew that I wouldn't be able to do a thing the following day if I'd not of slept for the past 2 nights and I didn't want to let my friend down, "here it's our first day but you can go fend for yourself while I hang back here." When I'm at home, I know how to handle not sleeping; I try to stay sane 'till I can drop off and then I sleep for as long as I need to, even if I miss a couple of days by doing so. But that wasn't an option for me here (another reason I felt apprehensive in the first place)

Oh quick side track (bare in mind at this point I'd been up over 30 hours and I'd just come 'round from a panic attack, so as you can imagine, I was feeling rather delirious), just when I was finally becoming sleepy and my heart had returned beating at it's normal pace, I heard someone screaming "help, somebody help me, please" outside the door, so obviously my heart rate shot back up in a second, I was scared, I didn't know what was happening on the other side of the wall. I then wasted (what felt like) 5 minutes trying to unlock the door, nearly pulling the lock off in the process while I could hear someone crying on the other side and once I got the door open and practically jumped outside the hotel room almost in a frantic mess, there were about 7 other people stood at the end of the corridor and a girl laid on the floor, long story short; a drunk girl looked to have been arguing with a boy and my heart nearly dropped threw my backside for no reason.

Apart from that, not very pleasant, first night I had a good time, I was exhausted and for a few days I was in a fair amount of pain but thankfully I didn't have any too bad days throughout the whole week, every day was bearable.
I did have to stop myself from jumping in the pool though, I use to love swimming, especially underwater but I really didn't feel strong enough to swim this year, I tried to use as little energy as I could with everything I did and I'm sure going swimming would be something I would have been left regretting the following day, so I settled with sitting on the side with my feet in! :)

About to traveling with pain and anxiety.

(I wouldn't recommend this post to any anxious flyers who will be traveling soon or anyone that is in a anxious mood, this will not be comforting. I wrote this to express my thoughts and feelings at that time.)

The difference between LOOKING ill and FEELING ill.

A lot of the time I think that the people around me may not be convinced about the pain I say I'm feeling or maybe they think I am faking the sudden dizzy spell that burst through my head or when I say I want the music off because it's hurting my head, making me feel claustrophobic when just 5 seconds ago I was happy listening to the music loud, I feel lots of different sensations in my head throughout the day causing me to feel disorientated and dizzy but seeing me lean on a wall or sit down on the nearest chair doesn't project a picture of what I'm feeling at that moment, there's nothing I could do to show you how I feel, you just have my word.
The people close to me, they understand but a lot of people don't understand, not everyone bothers to even try to understand, a lot of people will assume how you are on how you're looking that day.
I mean have you ever been asked if you're ok when you're fine; you just didn't put any makeup on that morning?

Now here is my 'game'... Which 2 photos out of these 4 would you think I would be feeling the most ill in?

One of those days!

It just passed 6am and I have already claimed today as a not a good day, may seem negative, I know but gosh I feel rubbish! I have been trying to sleep all night, I've give up at this point, this is no different to most days, getting up around 6am when I accept that I'm not going to be sleeping anytime soon. I don't know why this is any different to another night, it's not really but I guess I'm just over tired and not dealing with it as well! I'm going to get up and take a cool bath now, can't lay here any longer, my temperature is all over the place and my body is only going to become more restless.
(Update: It's 16:18, I'm still awake, have been for the past 25 hours, so hoping to get some sleep soon!)

I wish there was snow outside my window, I wish it was a frosty morning and that I needed to wrap up in my duvet but still feeling the cold air at my toes, I do love the sun and warm weather but right now as I imagine a frosty, snowy morning, it sounds perfect.

What have I been up to?

Gaining and losing weight while ill.

I am feeling brave today! Today I'm gonna put out there a lot of photos I wouldn't exactly call flattering. When I look at these photos I see more than just me looking like a gain a few pounds, I can see how unhappy I was and to me, they are sad photos, I often think that I can't really remember those couples of years but when I see photos from the time, I remember how I felt the day of that photo, in some, how much I really didn't want that photo taking, or how normal I was trying to act in front of my friends when being closed doors, I was a distraught young girl feeling like I had been thrown a few steps too far in life, too soon.

Note that this post is not intended to offend anyone, it is just my personal experience with gaining weight.

Please prepare for a long post, grab your cup of tea, make sure you're sitting down and be ready for a photo-heavy post, a lot of my face; not all the most flattering photographs!

2009

In the summer of 2009 life was all good, I was 12 years old in this photo >>, I was happily enjoying my holiday in Tunisia. Now I cannot remember to be exact but I think the winter after this was when I injured my back, I had an unlucky slip at school on a snowy day. It was one of those days where you wake up, look out of the window hoping that it had snowed enough over night that the radio would announce your school was closed, you know? The cold, snowy, wet sludgy days where all you want to do is stay in bed! Yes, one of those days, I was walking to my first lesson, I of course decided to avoid the cold and walk through the cafeteria to get to the other side of school, walking on lose flags covered in ice didn't sound ideal, though I didn't think about all the wet sludge that would have been trailed inside. So I of course, went to step down the steps on my way into the cafeteria and my foot slipped and I fell straight onto my back, my back banging straight down on to the metal edges of the steps, you know they put those metal bits on the steps to prevent accidents but what about when they are wet? They create a sharp, hard edge for your back to land perfectly on.

To help your imagination!
Though I don't remember the stairs I fell down looking that rounded at the edge.

BLUE SUNDAY! BAKING FOR ME AWARENESS

Today's the day, the day to bake! It's currently Sunday the 11th, it's almost 2pm and I am kind of dressed but I'm not looking very glam, I nipped out with my sister and I wasn't quite ready for the comfy pyjamas to tight clothes change, so I met half way and threw on some joggers and a creased t shirt.

How I spent 11am-2pm

My delightful clothing choice.
(Could be considered making effort for me)

It is now 3PM, I was hoping to have baked cake, drank several cups of tea and photographed it all by now! But no flour as yet been poured and the eggs are still waiting to be cracked, I have had to push back my baking time as the dinner has been taking over the oven all afternoon! At this point I've made myself look a bit more presentable and got out of my comfy clothes.

Right time to start a blog.

So as ME awareness week is approaching... 1 day to go, I have been reading more and more blogposts from people supporting the occasion. For a long time I've avoided talking about being ill, not that people don't know, they do, you can't really hide that fact you spend most of your days in bed. But when I am out of the house, I don't talk to friends about how ill I've been recently, how this is the first time I've seen sunlight this week, maybe I avoid talking about it and tell everyone 'I'm doing fine' because it helps me feel that bit more normal, or maybe its because I already think about it everyday when I'm stuck in the house, so when I do have the opportunity to think about something else for a couple of hours, I take it! I'm sure theres no harm in leaving the 'this is my life now' daunting thoughts at home, theres no doubt that they'll be ready and waiting to jump right back in my head once I walk back into the house. Though part of me does wants to talk to my friends, let them know how I have actually spent my week but who really cares to hear someone complain about their life when to them a life in bed, getting away with not reaching deadlines, sounds like a luxury. I always mumble away my answer to 'what you been up to?', some people say 'nothing really' just because they think they haven't done anything exciting enough to share but when I say 'nothing really' it's because I really haven't done anything, unless laying in bed is classed as something! But yes, I'm going way off the point, I wanted to talk about how I've never really cared to research ME, like I said, the opportunities I have to not think about it are great, so I wouldn't want go out of my way to read about it knowing I'll probably read something I didn't want to, the 'There is no cure for CFS' is usually the line that gets me. Makes me question why I thought googling the letters ME or CFS were a good idea in the first. Though recently I have seen the benefits in acknowledging it and acknowledging the other 'spoonies' (I've learnt thats what they/we are referred to as), out there. I am in a better place now where I am able to view this unfortunate illness in a positive way, yes I may not of found the boat with all the others spoonies on 'till now but I feel ready to board the boat and join in with this weeks events, starting with this blogpost, it's Saturday 10th May, it's 23:21 and I'm here writing this, with my blue ribbon on my top as we speak, I'm hoping to get some sleep tonight and be up tomorrow to bake and eat some cake to join in with lifeintheslowlanewithme's virtual tea party! Should I be this excited to eat cake, drink tea and post photos online while it happens?! I have to find excitement in something now don't I! :)
So heres to this awareness week for bringing something new out in me, a side that I want to share, so I am able to spread the awareness too!
Let's hope for a great week, I keep my fingers crossed for everyones energy levels, hopefully we all manage to spend at least one day on our feet this week!

Right this minute, first blogpost complete!

                                                                         
                                                                 Katie xx