Making positive changes…

So I’ve just got out of the bath and finished reading chapter 3 of Katie Piper’s book’ ‘Confidence, the secret’, which has completely inspired me to write this post. Yes, I was actually taking some time for myself and I didn’t feel guilty once!! (Those of you who know me well, will know how much of a big deal this is for me!) When I reflect not just on last year, but the last few years I have really let a lot of negative thoughts rule my life in so many ways. Starting 2018 I was, and still am, very determined to distance myself from things and people that affect me in a negative way, and change the conversation in my head with myself.

Over a lot of years I have taken comments people have made, some to hurt, and others not at all, and let them rule the conversation in my head with myself. As a result of which this has really affected my mental health (which I touched on a little in my previous post). I have over the last few years filled my head with thoughts such as; you’re not good enough, you’re not thin enough, you’re fat, people don’t like you, I’m not successful, I don’t have a big career, I’m a failure etc, and I’ve believed every word I’ve told myself. I suffer from anxiety (like a lot of people) and so my brain will concoct the worst case scenario in about 30 seconds, and I often (wrongly) let this affect me for days. When I say ‘let this affect me’, it isn’t a conscious choice, it’s a conversation in my head that I found difficult to change and if on that day my anxiety wants to play havoc, it will. And there is often very little I can do about it other than try my best to think of something else (much easier said than done!!). Some days I can just wake up feeling that way without seemingly much rhyme or reason.

Some of the few things I have been described as are; sensible, boring, negative, judgemental and stuck up. I really take comments like this very personally (probably too personally), especially when I don’t believe that I am these things. But then I think, is this really how people see me? Then I start another spiral of ‘I’m not good enough’ and so the cycle continues. However, I can honestly say that I have (after a lot of hard work) started to change that. My conversation now is that; I am good enough, I am strong, I am kind, I am caring and I am successful in my own way. I might not be everyone’s cup of tea, but I am who I am. So there’s two choices, like me for who I am, or don’t. I won’t say that it won’t bother me, because it will, but maybe it will just bother me less (well for today anyway).

My Negative Internal Comments (NICS), which I have taken from Katie Piper’s book had become pretty ugly. I don’t really know when I started to think so little of myself, but it actually made me sad, but in a “I’m putting a rocket up my arse and changing this” kind of sad. I had a conversation with a close friend recently about anxiety and how neither of us remember being so consumed by what other people think , or how a situation might look to someone else when we were younger. In fact both of us were fiery, no nonsense, outgoing, opinionated strong independent women (all by the age of 17 might I add!) I believe social media has a lot to do with it, and the constant comparing of your life to everyone else, and worrying about what everyone else might think. I have caught myself so many times saying “I wish I was like that” or “Look how amazing their life is”. The truth is, most people will only ever post the good things. I have never been someone who is going to paint a pretty picture if it isn’t one, this doesn’t mean that I’m negative, I am just being honest. Maybe too honest, but hey, mum always said honesty is the best policy!?

Some of my anxiety (not all of it) and negative thoughts I believe have often come from the frustration from not being able to control or fix my brothers condition. Take any situation you can think of where you can’t fix it, there is no resolve, you just have to wait and let it play out. First comes the frustration, then shear anger, then ‘this isn’t fair’, then tears, and then another last ditch attempt at some way to fix it, and so it continues. But it can’t be fixed, and it isn’t fair, but there is bugger all you can do about it. So, I can understand more now that when this cycle is a regular occurrence in someone’s life, why I’ve reached the point I did last year. I am now allowing myself the space to say you know what, “I’m not ok, this is hard, it’s unfair, I want to make it better and I can’t, and today I hate the world!”. But letting myself have that moment then pick myself back up, and kick some ass by telling myself that I CAN do this, I AM good enough and It’s OK to have a bad day!

Up until today every blog post that I have written I have over analysed, panicked about if people won’t like it and re-read about 100 times before posting it. Today I only re-read it 70 times, and I only panicked about 5 times (small steps!).

 

 

 

 

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2017… What a year!

2017 has certainly been a rollercoaster of a year to say the least. The highs have been really high, and the lows have been really low. This year I have had a wedding (mine), a hen party, two 50th birthday’s a 21st birthday and that’s just scratching the surface. It has certainly been a very hectic year.

The massive high has definitely been marrying the most amazing man and best friend I could ever wish for. We had the most amazing day, and all the stress and planning was 100% worth every single second. We got married at Armathwaite Hall on the 1st August, which is a very special place for us. This is where we had one of our first dates, where Adam proposed, and now where we got married. The date we got married was the date of our first date, and the date that Adam proposed, that will now be our wedding anniversary.

We had a very small wedding of just 24 people at the day, and I wouldn’t have had it any other way. Sat around that table where the closest and most important people in our lives that have been there through everything, good times and bad. It was a very emotional day with lots of personal touches, and that’s what made it so special (in my opinion anyway!). Considering there was a lot of years where I would never have ever considered marriage, it was the best thing I’ve ever done. Mum was right, it definitely changes when you meet the right person. (why are mum’s always right?! So annoying!)

So here’s the soppy part, but it has to be done. My now husband, is by far the best person I know. Without him I honestly don’t know where I’d be (in the nut house most probably!). He has picked me up at my very very lowest, embraces my crazy and just loves me for who I am warts and all. I never thought I would really ever find someone that would embrace all that (trust me it’s a lot of crazy!!) This year’s lows have been really tough, but he’s been my rock as always.

I have really struggled with my mental health this year which isn’t something I would ever usually admit. But, in the light of entering a new year with a new attitude, I don’t think we should feel embarrassed to say that we struggle with our mental health. For a long time only those close to me knew just how tough I was finding it, sworn to secrecy and hoping that I was hiding it well (I thought I was but who knows!). I would (and still do) build up in my head that everyone would think it was silly, that I was crazy or attention seeking. So it really does take a lot for me to write about it. In fact my heart is racing as I write! What I find both annoying and fascinating is just how much damage your brain can do, and how much it controls things like your mood. I have suffered from some of the worst panic attacks I have ever known, anxiety beyond control, and low points that that have taken me to some really dark places this year. Some of it valid, and some of it entirely made up scenarios in my head that I have created single handedly. But I do think I’m a stronger and better person for it. I have struggled on for a few years, but I’ve found it really hard this year. I know that it is something I will always have to work at, but I think if I had worried less about what other people might think (not an easy task!), it probably would have been a whole lot easier!

Joe’s health hasn’t been good this year which has been hard, which has fed a lot of my worry and anxiety naturally. And then I worry about mum and dad and then worry about worrying!! I think when you grown up and live in a high pressure, high stress, high anxiety household, it’s going to affect you mentally in one way or another. I don’t remember particularly struggling as a child, but as an adult I have found it really tough. If you too live with someone who has a life-limiting condition, I would take the time to remember that what you’re living as a part of is hard. It’s not fair, you can’t fix it, but it’s ok for you to not be ok too. My god it’s taken me years to realise it, but it’s true. Allow yourself the time that you give to everyone else, and if your a big sister or brother like me, stop trying to fix everyone else’s problems, because it’s what we naturally want to do. Some days I could just have a tantrum, cry, scream and stamp my feet all at once. But let yourself, get it out of your system. Then pick yourself back up, but your brave face on (because you do whether you realise it or not) and carry on. I realise now that if I had given myself the same leeway I give everyone else when they’re having a bad day, I probably wouldn’t have got myself into some of the states that I have done this year (Oh hindsight eh!)

So I for one will be entering 2018 with a new outlook, new rules for myself and taking lessons learnt into the new year. It’s good to reflect on each year as we start a new one, and really remember what we’ve accomplished, the mistakes we’ve made and start afresh! I for one am excited for what looks to be a very bright and busy 2018!

Happy New year! 🙂

 

 

 

Jigsaw Children’s Hospice…

Christmas is a time for giving, so I thought it would be nice to explain why we don’t do Christmas cards. As a family a couple of years ago we decided to stop sending Christmas cards, and instead we donate to Jigsaw children’s hospice and this is why.

Joe has used Jigsaw for respite for more than 10 years (I think) and without the amazing  service that the hospice provides, we would be at a real loss as a family. Both in terms of respite and support. When most people hear the word ‘hospice’ you in that instant see the expression of complete shock and panic distill across their face. And I do understand why, but I literally cannot get across in words just how much of an amazing, happy and peaceful place it is. I think everyone should go and really see what the place is all about, and most importantly just how amazing the staff are.

When we were young we used to attend siblings days that the hospice provided. These were days provided by the hospice where siblings of individuals with a life limiting illness got to go and do ‘normal’ activities together such as light water valley. Those days were often a life line for a little bit of ‘normality’ for us. It was an opportunity for us to feel care free almost. It was always reassuring knowing that everyone there was in the same boat. We all understood what each other was going through without ever really having to say anything. And that was the best thing, we could talk about it if we wanted, and not if we didn’t.

When I was young I never really knew what a hospice was at first. This has been part of our ‘normal’ from quite young, and still very much is. At first I didn’t used to like going in, and I think that’s because you feed off other people’s reaction to the word without realising. It always used to feel like such a daunting and scary thing. But if you’re new to being a part of your local hospice, I would really urge you to go and see before you make any judgments. Although a hospice is a sad place in many ways, Jigsaw doesn’t feel like you would expect a hospice too at all. I love going as it’s peaceful, the staff are always really positive, bubbly and mad as a hatter (which I absolutely love). There is just this real serene feel to the place. Once I had been for the first time I felt so much at ease and positive about it.

The staff are what makes Jigsaw tick, and I absolutely admire every single one of them. I have always felt supported by them as a sibling, and even staff that no longer work there still stop to speak if I’m on a night out, having a meal or just pass them in the street. They go so far above and beyond their job, and I cannot stress enough the importance and significance of what they do, and also the amazing way they deal with some pretty tough circumstances with such grace.

Over the course of each year my husband and I try to do as many events as we can for the Jigsaw. Some years we manage more than others, but this is always the charity I support 100% of the time. At christmas we all spend so much money on things like cards, when lets be completely honest, they go up for a couple of weeks then go in the bin. I would really encourage more people to consider scrapping it and giving to a cause close to your heart instead. It makes you feel good as a person knowing your supporting such an important service that has an impact on so many people’s lives. But it’s also nice to drop some of the commercialisation and do something kind and nice, especially at Christmas time.

 

 

The most wonderful time of the year…

It’s that time of year again… the shops are hectic, streets look like santa’s grotto (or mine does anyway), and considering it’s supposed to be a time about kindness and giving, it seems to bring out the rudest version of people! Or perhaps we’re just oblivious to it the other 11 months of the year, who knows!?

Christmas means something different for everyone, and for some people it isn’t always a good time of year…and that’s besides the freezing cold and much anticipated flu that rears it’s ugly head every year. For me, it’s all about family. I couldn’t care less if I don’t get a single gift, it’s just about being together. I think too often we loose sight of what it’s really about, and it does good to take a step back, a deep breath and a moment to really appreciate what we’ve got. Good, bad and indifferent.

This year is the first year that things really feel different for me. We’re all getting older, one of my brothers lives in Middlesborough (feels like the end of the earth sometimes), it’s my first christmas as a ‘Mrs’, and we’re all moving on with our lives. Gone are the days of camping on bedroom floors in case of reindeers on the roof, letting the dog sleep in the same room (the only time of the year this was allowed), playing xbox and watching films until we fall asleep. It makes me really happy, but sad at the same time. Happy that we had years of these traditions, but sad because I wasn’t quite ready to let go of them yet. But then I don’t know that I ever really would be.

For many years we camped in Joe’s room together with snacks and several duvets on the floor. Everyone always had little sleep, and a really bad back Christmas Day… apart from Joe of course. Think we got the raw end of that deal. But my favourite year, was the year that I beat both the boys at COD (Call of Duty). They both protest this… apparently it’s cheating to watch someone else’s section of the screen, and sit in a corner and shoot people as they walk past!? I do like to bring it up whenever I can! My point is… the memories are what’s important and I really can’t emphasise this enough. We’ve had years of sleepless nights, happy memories and make-shift Christmas’s during rough times. Now I guess it’s time to make new traditions as we get older.

This year I will be spending my first christmas morning at home with my hubby and our dog. As much as I miss all the old traditions, we have to make new ones at some point, and this is a good place to start with my first Christmas as ‘Mrs Bewley’. I think what feels scary is that it’s different. Not good, not bad, just… different.

This time of year especially, is about celebrating that it’s another year together. Another year we made it. Maybe a little more exhausted… but none the less. I think there is even more emphasis on this when you live in a family circumstance like we do. However, it’s also a time to be there for others that perhaps aren’t as fortunate as we are. A little thought and kindness can make a big difference to someone. It’s nice to feel that someone else has thought of us, so return the favour.

We’re very lucky that we are here, happy, and as healthy as we can be! Our family has never been a vision of health between us, but we’re all still here and that’s what is important. Even though lives move on, traditions change and we get older it’s important that we all remember… Santa is still real!! Make sure you’re on the nice list. It’s nice to be nice.

Merry Christmas!

‘Big Sister Syndrome’…

As the eldest of four, I have always tried my best to be someone my younger brothers and sister could look up to. I have always felt a sort of responsibility for them too, like a parent in a way. I think this is a notion you only really understand if you’re the eldest sibling.

For as long as I can remember, I have always had a desire to want to protect them, stop them making the stupid mistakes I did, guide them, support them, and give them a good kick up the arse when they need it! It’s not always made me very popular, but I have only ever wanted to give them the advice I didn’t have being the eldest.

As an individual I have always had ‘rescuer’ traits and wanted to help and fix everyones problems. This is a part of me that I do believe has been ingrained in me from a young age. While this is who I am as an individual, I do think our family circumstance has nurtured this part of me in a way I could never have expected. If someone is ill, I want to make them feel better, if you’re sad, I want to make you happy, if there’s a problem, I want to help fix it. But when you live with someone you love and care about, and they have an awful condition like my brothers… you quickly realise that there are some problems you just can’t solve. And that’s a hard and very bitter pill to swallow… a bit like when paracetamol dissolves in your throat before you can swallow it!!

As the eldest, I have always tried to be the strong one as I thought that was what everyone else needed from me. No one has ever told me that but I’ve always felt it. I always thought it was just me until I spoke to my husband who is also the eldest, and he was the same too. If your the eldest then heed some sound advice… you don’t always need to be strong! In fact, sometimes your siblings need to see that there a times where you need them too. It’s ok to let the mask slip.

I am very lucky in that generally, we are very close as siblings. We have crazy banter that no-one else understands, we’re stupid together and that is what has always kept our bond strong. When things are tough we have always glued together, and been a real force to be reckoned with. But like everyone else, we also piss each other off, fall out and call each other out on our shit. And that’s our normal. I believe it’s extremely important to be able to create good memories, have stories to tell and be able to reflect on the good times. The bad times, we all know can be really bad, but when it’s all getting too much and you feel like your drowning, those happy memories are what have kept me going time and time again.

When I talk about happy memories, I’m not always talking about huge things either. It’s not always about a big trip to disneyland or any extravagant event etc. Sometimes it’s just about that time one of us farted on the other, or the time we all went to the pub quiz and made a rude name for our team, or the time one of us went through a horrid fashion sense. That’s what keeps the light in it all, even though it’s really hard to see on a bad day, it’s there, you just need to look a little harder sometimes! But don’t ever stop looking 🙂

 

 

 

 

 

 

 

Who Am I…

Who Am I?… That’s a good question I suppose. I thought I should really expand on me, so more of you can understand where I’m coming from.

I am a wife, a big sister and a daughter. I am creative (I have a degree in Commercial Photography), I love fell walking, I like to be unique and different (not sure if this is a good thing yet!), I am passionate, but to be truthful, just fairly ordinary. I guess I am just… me.

My little brother suffers from Duchenne Muscular Dystrophy, which is my ‘why’. If you read my previous post this will make more sense. Now I’m going to be honest (unfortunately, I’m nothing if not honest), if your looking for statistics, information on the condition, or my view on whatever latest cure they think they’ve come up with, your in the wrong place. Take it from me, it’s shitty. And that’s all I’ll be saying on the matter.

I personally have never found any amount of going over this stuff makes it easier, and clinging onto a far alluded to hope of some cure, in my opinion does no good for anyone. Your missing on all of the good parts while your focusing on the science of it, which in the midst of it all means very little. The fact is, sometimes we are just dealt a really shit hand of cards, and we just have to accept what is (as hard as that is to swallow!).

This blog is my account on how this has shaped MY life. A siblings perspective. One that is quite often forgotten.

From a young age my brother has been firstly, a royal pain in the arse (like every sibling is at one point or another), and close second, someone I’ve always looked up to. I have learnt more on the meaning of life from him, than I ever have off anyone else. I vividly remember him being about 8 (maybe even younger) and saying that it was everyone else that had a problem, not him. I also remember fearing being subjected to a round of ‘fisty cuffs’ while he mouthed off at some teenagers saying; “What’s your problem? Do you want a picture?”. I can laugh now, but believe me he was holding no prisoners at the time!

But that’s just one occasion I can think of where he has defied the odds, and stood up for what is right. I look at it like this; if he can do that while dealing with all the shit that he does, what’s the excuse for the rest of us!? And that’s what sparks the fire in MY belly. His fire, perspective, determination and most of all… wicked sense of humour.

A good sense of humour just makes all the shit seem a little less shittier, and the world a little less daunting and scary. And believe me, our family knows how to banter like no other. Not everyone get’s it, but it’s what keep us going.

It’s important to keep perspective on all of this, and see the light and good in an unfortunate situation. As I write this I can think of so many happy memories, funny stories and hilarious comments made over the years. I really and truly believe that this is what we have to hold on to. And like I said in my previous post, no-one ever tells you the good parts, but fear not, that’s what I’m here for 🙂

Over the coming weeks I am going to be addressing a host of different topics, if there are some you would like to me discuss my perspective on, then I would love to hear them.

 

 

 

 

 

My ‘Why’…

So… I thought I’d start with my ‘why’. Why I’m writing this blog, and what I aim to achieve from it.

Straight up- I want to help people! I would also like to fulfil a dream (maybe a pipe dream who knows) of writing a book, and this seemed like a good place to start.

Anyone that knows me well will know that there is one topic that has always followed me through life, uni projects, careers, the list is endless… and that is disability. I have always come back to this professionally despite initially being reluctant to in my younger years (turns out dad was right!!). And not just disability, what it is like from a siblings perspective.

This blog is not going to be all gloom and doom, and neither am I about to divulge my deepest darkest secrets but, I want to provide a sense of support and understanding for others.  A support network where others can relate to a situation or milestone that might mean very little to someone else. This is my honest account of my experiences.

When you grow up with a sibling with a disability, I don’t know how many times I’ve been told it’s not a ‘normal’ situation. Yes, it might not be normal in the respect that it’s isn’t as common to other people, but it’s our normal. Define ‘normal’. You can’t because everyone’s definition is different. So, I’ve always adopted the attitude (courtesy of mum) that there is no such thing as normal and it’s honestly never done me wrong (hence the name of my blog!).

On entering my late teens and early adulthood, I quickly realised that unless you want to go to some support group which if you’re anything like me, is your idea of a nightmare, there is very little support out there. It’s very easy to feel like you’re the only person in this situation when others struggle understand and relate to your situation, but you’re not! There are more people then any of us care to realise, and we are quite often completely unaware of these people. These people are quite often as private as we often choose to be too.

But then there are the unhelpful, gloom and doom negative forums, blogs, books etc that pull on all the wrong things and in my opinion make things seem worse on a bad day. They often focus on the bad parts, but no-one really tells you about the good parts do they? The fact that you get a fresh and real perspective on life, it can shape who you become as an individual, the laughs, the milestones, the traditions you build, and the perfectly normal arguments over who is right and who is wrong!? Don’t get me wrong I will never paint a perfect picture when that isn’t the truth, but neither am I going to dwell on the negatives. I would like to believe that I can provide a balanced view, and maybe with a little humour too.

I can honestly say that I have struggled more through my late teens and early twenties than I ever remember as a child. On reflection, this has probably been my own doing. Over the last few years I have become a very private person. I don’t trust people easily, and I don’t tell people when things are really tough when I probably should. I put my face on and get on with it. Because that’s what I’ve told myself I should be doing for years. There’s always someone worse off right? But the truth is, it’s fine to say “you know what, I’m not ok. Things are tough and I’m doing my best.” And sometimes your best today doesn’t look like your best tomorrow, and that applies to life in general. But do I do it? Of course I don’t. It’s much easier to give advice, than it is to take your own!

Most of my life I have always had a desire to want to help others in whatever way I can. From supporting someone through a difficult time, direct care giving, or just chatting to the old man down the road when I’m walking the dog, I’ve always felt that a little kindness goes such a long way. You don’t know the difference you could make to someones day, and isn’t it nice to believe that maybe we’ve made someone smile today? This hasn’t always worked in my favour, but I can honestly say I’ve always had the most genuine of intentions. And that’s all I want to achieve at the end of the day. To spread a little kindness and understanding.

I really hope that whoever you are, you can find some support, laughter and feel a part of something positive. That you too can relate to my experiences and perspectives, and help find what YOUR ‘normal’ looks like… and if I can make you smile a little too then that’s a bonus 🙂