x-weareallmadeofstars-x-blog

[x-weareallmadeofstars-x-blog]

[x-weareallmadeofstars-x-blog]

Pressure, No Resolutions and Self Love...

Hi there, 

Before I start rambling on I just wanna say Welcome to 2019! I hope the first week has been a blast... I know a lot of people have gone back to school/work now so I hope you haven’t struggled too much to get back into your normal routine. 

New year is a strange time, you lose track of the days and you’re still in that happy post Christmas phase. I also think some people put all of this expectation on New Year to be perfect and that as soon as the 1st January hits you have to improve yourself and change yourself. Personally I don’t agree with this. I’m not going to lie, I too have fell into this trap many a time. I agree with setting yourself goals if that’s what you really want to do but don’t put yourself under any pressure and don’t beat yourself up if you don’t reach that goal in a certain time limit. I haven’t set any new years resolutions this year  because I always put pressure on myself to achieve them and I never do. As long as you’re happy and healthy, that’s all that matters. 

Another thing that really annoys me about New Year is that there is pressure  everywhere to lose weight, to join gyms and go on diets. First of all, why wait until New Year to go on diets and join a gym? Second of all nobody should be/feel pressured to lose weight. You should want to lose weight/be healthy for yourself, not because there is a societal pressure on you to look a certain way. I’ve lost count of all of the adverts I’ve seen on television and social media and leaflets I’ve received in the post about joining gyms, downloading fitness apps and diet plans this month -and we’re only 8 days in!-. Since when was the worst thing a person can be is overweight? I’m not saying that being overweight doesn’t come with health risks, it does, and I’m all for losing weight for health reasons, but what I don’t agree with is shaming someone because of their weight. I truly believe that everyone is beautiful regardless of their size/shape. Everyone is different and it would be so boring if everyone was a copy of everyone else. Beauty really is in the eye of the beholder.

 I was scrolling through Instagram looking for makeup ideas the other day and came across a beautiful woman showing off a lovely makeup look she’d created and one of the comments really pissed me off. Basically it said “it is not good to be obese” and that “she’s promoting obesity” which first of all calling people names like that is just plain rude. Second of all, she’s promoting her makeup look and the brands she used,not her size. So what if she’s overweight? You don’t know a person’s story... there might be a medical reason or if not it’s got nothing to do with anyone else! 

I’m not a small woman by any means, I’m generally a size 12-14 but have been known to fit into size 18 depending where I shop. I’d be lying if I said I loved my body because there has been times when I’ve sat there sobbing to my mam because I’ve weighed myself or looked in the mirror and it’s made me feel shitty. But recently, my mindset has totally changed. I’m more comfortable in my own skin, I don’t hate myself anymore and I’m happy with the person I am. There’s worse things I could be. I’ve also stopped comparing myself to other women too. Yes I’ve got a belly and wobbly thighs but I’m happy and that’s all that matters. 

So if you’re reading this and you feel like you haven’t got the “perfect body” YOU HAVE! It’s perfect because it’s yours! Stop hating yourself because other people tell you that you don’t look a certain way. Screw them! YOU ARE BEAUTIFUL! 

I feel as though I’ve totally rambled and I apologise if this makes no sense but I just thought I’d share some of the thoughts in my head and spread a bit of positivity. 

Much Love, 

Amy :) xx

[x-weareallmadeofstars-x-blog]

An update and Life with Dystonia...

Helloo! Long time no speak! If you are reading this I hope you are well and you have had a lovely christmas :) New Year 2018 is in 2 days and I’m so excited! 

Lots has changed this year, my relationship and my state of mind to name a couple. I’m the happiest I’ve been in ages and looking forward to 2019, bring it on! 

The one thing that hasn’t changed is my Dystonia... in fact that’s a lie, it’s getting worse. (If you don’t know what Dystonia is I have written a post about it and how it affects me... see here - https://www.tumblr.com/blog/x-weareallmadeofstars-x ) My treatment isn’t working as well as it should be and things are getting harder my consultant is very good and is trying all options, so fingers crossed he finds a way to help me. The worst thing about having Dystonia apart from everything being a struggle, is the way you think people perceive you. I think people see me as this vulnerable person who needs looking after and needs things done for her all of the time. When in fact I’ve learned to be very independent and to adapt things so that I can do them for myself, it might look really awkward for someone else but more often than not it’s the most comfortable way for me. As long as I’m not hurting anyone else or causing mayhem then who cares as long as it’s easier for me. 

One of my main goals in life, that I feel most people take for granted, is getting a job. I’ve always wanted to work since I left school and have had small part time jobs or volunteered for years but I’ve never found a job that I can  do or have felt settled in. I’ve either found the job extremely difficult or been openly bullied. I’ve lost count of the number of interviews I’ve been to or jobs I’ve applied for and not gotten anywhere because as soon as I mention my hands I’m put straight on the rubbish pile. Or the worst thing, being accepted for a job and after 2 months being let go on some bullshit excuse incase you sued them for discrimination. All I need is for  an employer to see past all of the things that I can’t do and see the million things that I can do and give me a chance. Also I’m incredibly grateful for all of the people who send me links for jobs but all it does is make me angry because I can’t do any of the jobs I’m being sent  as they’re in retail or bar jobs which are all very physical or fast paced. It gets to a point where I have to just  grin and bear it and say"thanks” and “oh i’ll definitely apply” or else it’ll look like I don’t want to work. It’s incredibly frustrating! I’ve also been told that I should volunteer for places and it’s like no because I’ve volunteered before for years and never gotten anywhere, also I’m 26 I need to be earning money. I think with volunteering, people take the piss and just use you for free labour with no intention of offering you a job at the end of it. That’s always been my case anyway. 

It’s not often I rant about my Dystonia but it’s been playing on my mind and I thought writing it all down would make me feel better. I’ve had Dystonia for 17 years now and I’ve accepted it’s something that I’m going to have for the rest of my life as there’s no cure. I’ve also learned that people are going to have to accomodate and fit around me instead of me trying to fit in around them. I’m still learning to ask for and accept help when I need to and the right people won’t make you feel like  less of a person for doing so. I’m less embarrassed about having Dystonia and calling it a “disability” now too because I don’t consider myself “disabled” I’m just a human being who struggles with certain things. I used to be so worried about sticking out and looking different, whereas now I couldn’t give a shit... it says more about the person who has a problem with it than it does about me. 

The moral of the story is: If you feel like you’re different or you stand out then don’t care what people think or say. You be you and if they choose to be a shitty person then that’s on them, not you. Accept and love yourself. (easier said than done I know :) ) 

Happy New Year, 

Amy x

[x-weareallmadeofstars-x-blog]

25 get to know me questions...

1. Are you named after anyone?  I’m named after my great Auntie Amy. unfortunately I never got to meet her as she died before I was born. 

2. When was the last time you cried?  Earlier on today when I went to visit my granda’s grave. I was fine for ages then a memory popped into my head and it set me off. Then I got angry at myself for crying which is just stupid. 

3. Do you have kids? No but I’d love to have a little bean growing inside of me one day :) 

4. If you were another person, would you be a friend of yourself? Of course! I’m awesome! Nah in all seriousness I think I’m a really good friend 

5. Do you use sarcasm a lot? I really don’t, I think sarcasm makes you sound like a dumbass haha 

6. What’s the first thing you notice about someone? Their eyes or their mouth... when they start talking though I notice their attitude. 

7. What is your eye colour? Green... but they change colour depending on my mood

8. Scary movies or happy endings? Happy endings all the way! Bonus points if they make me cry haha! 

9. Favourite smells? Erm.... Anything fruity, petrol, fresh grass, party poppers 

10. What’s the furthest you’ve been from home? Cyprus, Greece... my first holiday with my boyfriend 

11. Do you have any special talents? Not really no..

12. Where were you born? I was born at South Shields hospital in North East England 

13. What are your hobbies? I like listening to different types of music, reading, writing and watching YouTube videos 

14. Do you have any pets? ! don’t sadly

15 Do you have any siblings? Yep! 

16. How tall are you? I’m a dinky 5 ft 2 

17. Funniest moment throughout School? During my Duke of Edinburgh my class decided to make and sell smoothies. So my friend and I sold this kid a smoothie and as he takes his first sip his arm gets knocked and this smoothie goes everywhere! I mean everywhere! His face, his hair, down his front... well me and my friend thought this was hilarious! We wet ourselves! 

18. How many countries have you visited? 3 ... Tenerife, Spain and Greece 

19. What was your favorite/worst subject in High School? Favourite= English worst= maths/french 

20.What is your Favorite drink? Pornstar Martini 

21. What would you (or have you) name your children? Olivia/Oliver/Niamh/Elliot 

22. Who are some of your favorite YouTubers? Louise Pentland, Sacconejolys, Mark ferris 

23.How many Girlfriends/Boyfriends have you had? 4 

24. How would you describe your fashion sense? Just my own style... casual 

25. Tell us one of your bad habits! Being Messy :P 

That’s it! Thanks for getting this far! 

[x-weareallmadeofstars-x-blog]

Losing my Granda + How I’ve dealt with grief...

I’ve been putting off writing this post because I didn’t want it to seem like I was coming across as “attention seeking” or like I’m looking for sympathy. I’m definitely not! I’m pretty sure most of the people who read this have lost someone close to them or know someone who has lost someone. I’m just sharing my experience. Also just a warning! Please don’t read if death is a subject that triggers you. 

I’ve lost quite a few people in my life... both friends and family members and it never gets any easier. I lost my Nana Emma when I was 4 I think and then my Nana Rosie when I was 10 but I was young and didn’t fully understand death and I suppose when you’re a  kid you’re quite resilient and just get on with things I guess. Obviously I was so upset at the time and I still miss them but I was just a kid. When I was 14 I lost my best friend to Duchenne Muscular Dystrophy, he was also 14. Then in 2017 I lost my other friend also to DMD; he was 23. It’s an awful disease and steals young lives. I sometimes get angry about it because at the end of the day I’m only 25 I shouldn’t have to bury my friends at this age but sometimes unfortunately life’s shit and it throws these situations at you. 

On 12th December 2017 I lost my Granda, which is something I still find hard to say. Obviously it was only 3 months ago which isn’t long at all so it’s still very painful and raw. In a way it still feels like he’s here, just like he’s went on a long holiday or he’s working away again. He died very suddenly and it was such a shock because he’d been out the day before shopping in Morrison’s completely fine. I found out at half 1 in the morning as I was round my friend’s house having a couple of drinks and my mam rang me apologising for ringing me `so late. I got a taxi straight to my granda’s house because my mam, auntie, nana and cousin were already there. I sat next to him for a while and held his hand, I got a shock because he was so cold (I knew dead bodies got cold but considering this was the first one I ‘d seen I didn’t really know what to expect) I tucked his dressing gown a little bit tighter around him and went and opened the kitchen window to let his soul out of the house so that he wasn’t trapped. 

I naively thought that my Granda would live forever (not literally of course) even though he was getting older and the truth is  over the last 6 months to a year of his life he was getting weaker and it was harder for him to get out of the house. Ever since he had to give his car up he just wasn’t the same. It gives me some comfort to know that he didn’t suffer. ‘I think he went the best way for him- quick and without pain. Obviously not for us, his family because we’d have loved to have had a chance to say goodbye. 

This is me and my Granda when I was little...

I love that photo because it looks like he was about to torment me, that’s the kind of Granda he was. He loved to have fun and play tricks on you. 

How I’ve dealt with my grief... 

I love writing so I keep a journal and obviously I have my blog, it helps me get all my feelings out. I also have little cries now and then; I tried to stop myself from crying because I don’t want to upset anyone else but  now if I get emotional I just take myself off somewhere private. I also experienced anger when it first happened but that seems to have dissipated -  counting to 10 helped. 

I feel like  2 separate people, the  Amy  before it happened and the Amy after it happened. I can’t explain it. I’m not the same person. 

What I’ve learned is that no two people grieve the same way and there’s no time limit on it either. It’s not something you just get over. So grieve however YOU want to, there are no rules. 

Sleep tight Granda, I will always love you x

P.S  keep sending me those little signs :) 

[x-weareallmadeofstars-x-blog]

Sometimes you will never know the value of a moment until it becomes a memory

Dr Seuss

[x-weareallmadeofstars-x-blog]

I’m Back! + Life Update...

Hey Everybody! Long time no see! In fact my last blog post was on 7th March 2017... I have no excuse really as to why I haven’t posted in all that time. I think it’s because I had no idea what to write about and then I just gradually forgot about it. Plus it makes it harder when you ask people what they’d like to hear about and no one answers you haha! 

In the past year I left my mental health job for a complete career change with the promise of more hours and then got let go from my new job because there were no hours and my dystonia got in the way (I’ve done a whole blog post on my dystonia if you want to have a look, see here ) So now unfortunately I don’t have a job and I am looking but it’s hard to find a job where it won’t affect my Dystonia. 

My lovely Granda passed away on 12th December 2017. It was such a shock and completely unexpected. Words can’t describe how much I miss him. I might write a separate blog about that day and what happened. 

It’s coming up to my 3 year anniversary with my boyfriend and we are going on holiday soon so I’ve got that to look forward to! 

I’m planning on writing more so if you have anything you’d like me to talk about just let me know in the comments or the ask box :)

See you next time... 

[x-weareallmadeofstars-x-blog]

what having Bipolar is actually like for me...

I’ve been scrolling through my past blog posts and I’ve realised that I haven’t really talked in-depth about what having Bipolar is like for me. I’ve mentioned what it is and all that kind of stuff but nothing personal. I wasn’t going to publish this with it being so personal but like I keep saying if it helps someone else in some small way then I’ve accomplished something. I’ve also mentioned something in here that I’ve only told one other person. 

When I’m on a manic episode...  

I’m a type 2 so my manic episodes aren’t as bad as they could be. My mood elevates- I’m on a high and so happy and optimistic - which sounds great but it isn’t really... I feel out of control and tend to spend more money than I should, I also tend to cross roads without looking which is obviously very dangerous. I tend to get very irritated with people because they’re not on the same level as me, meaning my mind races and they can’t keep up. I can’t keep still and always have to be doing something and get bored very easily. I can’t concentrate on one thing for more than a minute. Time seems to drag and it feels like I’m moving faster than everyone else. I’m also a lot more chatty. 

When I’m having a depressive episode...

My depression is as bad as it can get. I tend to cry my eyes out for hours at a time, It sounds disgusting but I don’t wash as much as I should, my hair’s a mess and I don’t wear makeup. I don’t leave the house much and the thoughts -oh my god the thoughts- are so bad. I believe everyone hates me, thinks I’m ugly and just a terrible person to be around. I think my boyfriend is gonna leave me when he’s not. I literally can’t think of a single reason why he’s still with me when there are a lot more beautiful women out there who won’t cry on  him every 5 minutes. I need constant reassurance from him. I think he’s going to go off with other people. But all of this is just a projection of how I’m feeling about myself and the body issues I have. 

Daz if you’re reading this, just know it isn’t me ... it’s my brains way of coping with all the bollocks I’ve had to put up with in my life, the way I’ve been treated in the past and continue to be treated in some small way. It’s going to take some time but hopefully it won’t last forever. You’re the first person to treat me the way I should be treated and it’s taking a while to get my head around. :). You’ve been here for the last 2 years and managed to put up with my mood swings so I hope you can for many more years to come. 

If you have experienced anything like this or just want to chat then comment or give me a message :) 

[x-weareallmadeofstars-x-blog]

My blog is 1 year old!!! plus a cheeky little Q&A

It’s all in the title really... yes this blog turned one year old today! it’s flown by really quickly actually and there’s been a few times where I’ve had writer’s  block and really struggled with what to write about, how much to share and wondered whether what I was writing was of any interest. But hopefully it will get easier from now on. 

To honour the first anniversary of this blog I’ve decided to do a little Q&A. 

1. Before you started this, what were you doing? I’ve been watching The Moorside, Eastenders and Youtube videos. 

2. What did you dream about last night/ do you remember  your dreams? Most of the time I do, last night I dreamt that I was in a crowd of people watching a plane crash. If any of you could tell me what it means it would be very helpful! 

3. What is the last film you watched? Moana :) It was really good, I’d recommend it. 

4. Would you ever consider living abroad? Yes! Definitely! I’m not sure where though, America or Australia I think :) 

5. Which store would you choose to max out your credit card? I’d like to think I’m smart enough to not get myself in any debt but if I had to I’d choose Urban Decay and make myself look pretty :) 

6. Do you carry a Donor card? I do indeed :) 

7. What did you want to be when you grew up/ what do you actually do? I wanted to be either an archaeologist or a flight attendant. I’m actually a support worker in mental health. 

8. What is your favourite time of day? Night-time, I seem to have more energy, definitely a night owl! 

9. What inspires you? A lot of things ... mainly people who have come from awful backgrounds and have made something of themselves. People who struggle everyday of their lives and still get up and see the best in the world and who don’t act like arseholes :)   My mam :D 

10. What is most important in life? For me, its having people around you who support you and make you a better person. Family and friends you can count on. And love! 

I hope you’ve enjoyed this and let me know what you think in the comments. Also let me know if there’s anything you’d like me to talk about in the future :) 

Amy xxx

[x-weareallmadeofstars-x-blog]

when your best friend moves away...

I’m sure I'm not the only one who’s been through or going through this experience. It is truly awful. As much as you’re proud of them for finally doing what they've always wanted -like going to uni for example- the thought of them not being here is really hard. Especially when you're so used to seeing them practically everyday. In my case, my best friend moved to Leeds to go to uni and I'm so so proud of her! It's something that she’d been wanting to do for a long time but couldn't for various reasons that I'm not going to delve into cause it's personal. 

I very recently seen her as she was home for Christmas and seeing her again made me realise just how much I have missed her. So much so that I cried like a baby when I saw her haha! And trust me, crying outside Frankie and Bennies in Newcastle while there's a famiily trying to enjoy their meal was not one of my best moments! 

l-r Karena and me :) 

Me and Karena have been best friends now for almost 7 years and I'd say she's one of the best people I know.... We’ve been through quite a lot together and helped each other through some of the worst times. When we met in college in 2010 we had quite a large group of friends and as the years have went on its just become me and Karena. As some of you may know through reading my other blog posts, I have bipolar disorder and I started noticing the symptoms around 6 months to a year after meeting Karena when I was 18. It must have been fate or something that I'd met her shortly before the 💩 Hit the 💨. She has been there through the thick and thin of my illness... From being so desperately low that I didn't want to be here anymore, to my ramblings on and hyperactivity when I'm feeling on top of the world to me being terrified when I was hearing and seeing things due to psychosis. She's seen it all. If it wasn't for her I don't think I'd be here or wherei I am now.

We've laughed together and cried together and I can honestly say she knows me better than I know myself. I know if I ever need her she's only a message/phone call away but it can be difficult to know that I can't just pop around for a cuppa and a chat. 

Despite how hard it is without her round the corner I'm immensely proud that she's moving on with her life with a man she loves in a different city working hard for her future. I love her to bits and wish her all the best in whatever comes next. 

What do you think? Have you ever had a friend who's moved away and how did you cope? 

Amy :) 

[x-weareallmadeofstars-x-blog]

Be happy with who you are and what you do, and you can do anything you want

Steve Maraboli

[x-weareallmadeofstars-x-blog]

Mental Health at Christmas...

          Hi There, 

Seeing as it’s the festive season I thought I’d write about how Christmas and New Year makes me feel. 

Overall, I love Christmas! I really do, I love all the gift giving and spending time with family and friends and all the drinks, fashion and weather that comes along at this time of year too. However, there’s a few sides to this time of year that I’m not fond of and that’s the shopping... god the shopping! I love buying presents for the people I love and watching their faces when they open them. I hate all of the crowds and the pushing and shoving as I get quite anxious and very irritable... I’m one of those people that like to zip around and get what they need and come straight home. I’m also limited to how much stuff I can carry because of my Dystonia (see previous blog post) and it causes me actual pain and I get very tired very quickly. The only way I can describe the pain is, it’s like lifting weights all of the time and my arms ache. For example, a few weeks ago I was only carrying 2 items and my arms were seriously hurting and it wasn’t even heavy! So this means I need to make multiple trips to town to get what I need. This year alone I’ve been to town 4 times. I’m now all finished and wrapped :) Hurray! 

Before all of the gift giving and that jazz it’s thinking of what to get people especially when they are no help whatsoever and don’t tell you what they want! I’ve shed quite a few tears stressing about what to get people and convincing myself that they are going to hate both the gifts and me, especially when they always buy me really thoughtful and lovely presents. So stressful!   

Anyway,  another side of the festive season that fills me with fear is spending an extended time with family and friends and I know I’ve just completely contradicted myself but being in social situations tend to make me feel quite anxious especially as there’s loads of people at one time. This year there’s a few new additions as well. I love it and hate it at the same time, it’s all very confusing. I think in my head there’s more of an opportunity for people to see me make a tit of myself and that’s why I get quite anxious. I also get very anxious when I give presents to people because of their reaction and what they really think of them.  

I realise that so far it seems like I’m moaning about things that other people would kill for and that I’m really lucky, and you’d be right! I am very fortunate, I have a family who I love and who love me (even though we’re a bunch of nutters!) I have some money so that I can buy presents for the people that I love; I have a roof over my head etc. I tend to struggle with my mental health at this time of year as many do. I have no idea why... I think it’s cause there’s this notion that you have to absolutely always be so happy and you aren’t allowed to be miserable or upset at all or you’re a party pooper!. I’m sorry but that’s an unachievable expectation! With or without a mental health issue. I think this year is the first year in about 6 years where I’m actually excited for Christmas  (couldn’t have said “year” anymore if I tried!). I’ve always felt really low and depressed and guilty because everyone else is really happy and I’m just not. But hopefully Christmas 2016 is very different. Actually, last year wasn’t that bad but that’s down to having Darrell in my life :) (sick noise). 

Whether or not I’m looking forward to this year’s Christmas because I’m back on medication or what I don’t know but it’s a good feeling! 

I’ve always enjoyed New Year more than Christmas and I don’t know why. 

Anyway, I hope everyone reading this has an amazing Christmas and New Year! And remember that it’s okay to feel a bit sad over the holidays and if you know anyone who struggles at this time of year then be a good friend/ family member and don’t be harsh if they’re not as happy as everyone else, be there for them and let them cry or vent or even have a bit of alone time if they’re feeling a little overwhelmed with everything. 

If you’re one of the people feeling overwhelmed then yiou can always talk to someone about how you’re feeling. I hope you feel better soon! :) 

Samaritans - http://www.samaritans.org/how-we-can-help-you/contact-us

HO HO HO! Merry Christmas! 

[x-weareallmadeofstars-x-blog]

Over analysing and worrying...

Hey there, 

Surely I’m not the only one who does this. I play scenarios over and over in my head, especially when I’ve made a genuine mistake, for ages afterward; sometimes even for days or weeks . It makes me absolutely miserable and anxious. The worst thing about it is, is that you’re afraid someone is going to bring it up again and it’ll make you want to run away and hide and agonize over it. Especially when the person has no faith that you won’t do it again. I’m not going to say what happened but it wasn’t as big of a deal as I’m making it out to be and it was a genuine mistake and it DEFINITELY will NOT happen again. Of course I’m sorry that it happened but it isn’t fair on me to keep agonizing over it and for that person to have no faith it won’t happen again. I’m not the type of person that will say or do something to upset someone else (unintentionally) and not care.  It’s genuinely making me want to avoid the whole situation and hide. 

This is only a short post I just thought I’d write about it as it’s been on my mind for days. 

ccccc

[x-weareallmadeofstars-x-blog]

[x-weareallmadeofstars-x-blog]

My experiences of having more than one disability and how Dystonia affects my life...

 For those of you who know me know I have Dystonia (hence the title genius :) ). Dystonia is a neurological/movement disorder that can affect different parts of the body. It causes awkward, unusual and sometimes painful movements called “posturing”. I have it in my hands and arms, it’s been mentioned that I have traits of it in my feet too but because my hands are worse I tend not to notice my feet and doctors focus more on my hands. Technically I have multi focal Dystonia which means that two unattached parts of my body have dystonia; for example, my left and right arm. I know I’m lucky really because some people have it all over their body. In this blog post I’m going to tell you exactly how much of a pain in the arse it is for me, because I’ve had it for so long now that I just plod on and I’ve done such a good job of not letting show how much I struggle and how mentally draining and heartbreaking it is knowing that it’s not going to get better, it’s an incurable condition. 

Let’s go on a journey, a long long time ago...(Approximately 24 years, 3 days and 2 hours ago)...

I was born. My poor mam had to be rushed in to hospital to have an emergency c-section because I was an “abnormal lie” which means that I was still moving around but just in funny positions (I think). I don’t really know exactly what happened (I was just a baby after all :P) and yes yes, I know I’ve always been abnormal shut up mickey takers!. A few hours after I was born I wouldn’t feed and I went all floppy (it’s known as floppy baby and is a warning sign that something sinister is going on). This was when Cerebral Palsy was mentioned but no tests were performed and I haven’t been diagnosed. I don’t know if you read my last post but in it I had a little rant about how I’ve slipped through the net and how loads of conditions have been mentioned but none were ever looked into. Spastic deplegic Cerebral palsy and dyspraxia to name a couple. Anyway, my poor mam was left to her own devices with me and after I wasn’t feeding I stopped breathing and the doctors had to resuscitate me twice, my brain was starved of oxygen for god knows how long. Little did we know it but that’s when my life and my mam’s life got a lot harder and all my problems started.

Coming Home...

When my mam left the hospital, having to leave me behind in intensive care she came back to visit and was informed as an afterthought that while she’d been away I’d had a number of seizures. I was discharged from the hospital (still having the odd fit) and grew up into a very troubled child with terrible anger issues and making my mam’s and the rest of my family’s life hell. My sheer frustration and anger was always taken out on myself. I can still remember lashing out and screaming for no reason but I have no idea why I did it. Anyway, after taking me to the doctors and them telling my mam that it was her fault and I was spoilt, she took me home completely frustrated and angry that she wasn’t being taken seriously; she knew for a fact there was something underlying and that I wasn’t quite right. She was sitting one night and there was a documentary on about these kids who acted exactly like me, so she marched me along to the doctors (yet again!) and demanded help, she mentioned the documentary that she’d watched and how I needed tests done to find out what was wrong. The doctor simply printed out a prescription and said “here” without even telling my mam what it was for, she had to find out for herself when she went to the chemists; we now know it was for Epilepsy. 

If it wasn’t for my mam fighting tooth and nail for all those years (and still does now in some respects) I wouldn’t have gotten the very little help I needed. She was told when I was born that I probably wouldn’t walk and talk and that I’d just be a vegetable pretty much. My mam made sure I walked and talked! it may have taken me a lot longer than the other kids but I finally did it! I can’t thank her enough for helping me then and still being there for every hospital appointment that I have now, She’s taught me how to fight for myself and stand up when I feel like no one is listening; she really is one in a million!  

Getting a little bit older...

So, everything was fine for a couple of years; I still wasn’t like the other kids but I’d started to accept that until I went into school one week and had a spelling test... we had one on the Monday and my handwriting was a little messier than normal but put it down to not writing all weekend; then we had one on the Friday and I couldn’t even put pen to paper and when I tried my arm was in this weird contortion. I had to explain to the teacher that I physically could not touch the paper with the pen and she must have thought I was taking the mickey! All the other kids went out to play and my mam was called...it took me 45 minutes to write A-M-Y and even then it looked like a 2 year old had scribbled it. I was distraught because I didn’t understand what was happening or why it was happening all I knew was that I loved to write and I couldn’t anymore. To cut a long story short I ended up seeing a load of different doctors for different things until I was referred to a specialist in pediatric Dystonia. It still wasn’t confirmed that I definitely had Dystonia as they “didn’t want to label me” but I was receiving all of the same treatment that a patient with confirmed Dystonia would have received. I’ve always hated when doctors say “we don’t want to label a child” or “we don’t believe in labelling children anymore” because without that diagnosis on your medical records you don’t receive the help that you really need. Diagnoses are so important especially when starting school or getting special requirements in school and even for starting a new job. If you don’t have the diagnosis then it sounds like you’re just making it up! 

It’s been 15 years since that day in school and I’ve been on medication to ease the symptoms none of which have worked in the slightest, I’ve been discharged from all hospitals for no reason, despite still needing the help. I’ve demanded to be readmitted because I still felt like I was getting nowhere and nothing had changed - it was getting worse if anything! I can honestly say the only thing that helps is getting 6 injections of Botox in my arms every 3 month (3 in each arm). It doesn’t take the symptoms of Dystonia completely away but it stops most of the “posturing” which reduces some of the pain I get.

So let’s get on to the topic of...

Symptoms 

Every new doctor I see always asks me this question...”So, how does Dystonia affect you Amy?” After 15 years I really really hate this question! especially as they know it’s in my hands. My answer every time is... From the minute you wake up on a morning to the minute you go to bed what do you use your hands for? basically every time I use my hands for anything it hurts, they go into weird movements and contortions... even sitting still is a pain, I physically cannot keep my hands still! They jerk and shake all of the time, trying to get to sleep at night is a pain in the ass when your hands won’t keep still. When I’m trying to watch a movie with my boyfriend and give him a cuddle of hold his hand; my hands are always there jerking and making me feel awkward and fidgety. Luckily for me my boyfriend is very understand and knows that it does my head in so we make light of it and laugh every time it happens. He knows what to do to stop them from hurting when we’re watching a film... he traps them, basically getting in a comfortable position and “trapping!” my hands so they can’t move as much by holding them in a vice-like grip so they physically can’t move as much which helps me cause it reduces the pain. If he’s not there I have to resort to trapping my own hands between my knees or gripping really tight onto something soft- which again makes my arms ache.                         Brushing my hair/teeth, carrying pots and pans, cooking, writing, sitting still, carrying anything etc. you name it I find it difficult to do. Even carrying 2 items of shopping around a supermarket makes my arms feel like I’m lifting a 200lb weight, The pain is unbelievable. 

I just thought I would write this post about some of the conditions that I have and give you a little insight into my life. It’s kind of a mix match of everything that has happened in my life and how hard it is to have something wrong with you and getting help from the people who are supposed to i.e medical professionals can sometimes be a lot harder than it should. My advice is, if you genuinely think there is something wrong and you feel like you aren’t being listened to, push it as hard as you can because you never know it might change your life. I’ve only given you a little snippet of what I go through everyday but I think it’s enough to understand a little bit about what dystonia is and my battle through life :) 

As always thank you for reading this far and I apologise if it’s a little all over the place. 

Until next time, 

Amy :) 

p.s please leave comments if you can for constructive criticism or suggestions on things you’d like me to talk about. 

[x-weareallmadeofstars-x-blog]

My trip to Scotland (Autism and other things)...

Hey! 

As the title suggests I took a trip to Scotland on Monday and Tuesday (24th - 25th October) to go see an expert in ASD (autism spectrum disorder) for my little cousin Ava. We went to see a relative of my auntie’s friend who is an optician but helps people with Autism. I’m not going to pretend to know the ins and outs of it or exactly how it works but the way Ian Jordan (The Magic Man) explained is “ All of the senses (sight, sound, touch, taste and smell) are out of sync with the body” and to have this happen can be very overwhelming. He’s found an innovative way to “fix” this problem and that is... Blue light therapy or wearing Blue lenses. We didn’t know this though when we went to see him, we walked in blind -excuse the pun- expecting him to teach us more about Autism... Boy were we in for a shock! 

We started off talking about Ava, Ian asked my auntie all kinds of questions while Ava went to get her eyes tested. Then he asked if there was any family history and that’s when I was mentioned. For those who don’t know, my mam had a very difficult birth with me, I died twice, had to be resuscitated and my brain was starved of oxygen all at a few hours old. As a result of this -we believe- I’ve had to go through a lot of struggles in life and a lot of conditions and illnesses were always mentioned but never diagnosed; much to the frustration of my mam and now me. One of these conditions that was mentioned but never diagnosed was, wait for it.... AUTISM. I’ve never really associated myself as being autistic; not through being ashamed or anything like that, I just see myself as me and that’s it. Although I do know that I’m not quite the same as other people and I do struggle with certain things that should come easily to me. The way I see it, it’s just another part of my (awesome) personality ;). This trip has proven that I am on the Autism Spectrum regardless of a professional diagnosis. I know they say that everyone on the planet is on the spectrum somewhere and I believe that to be true, it’s just more pronounced in certain people than others. 

Anyway, Ian tried to do some tests on Ava and ask her to answer some questions but Ava struggled with some of it so he asked me to do it. I know I don’t know exactly what it’s like for Ava but I can take a pretty good guess. Ava and I are so similar in so many ways and I see a lot of myself in her when I was her age, it’s quite spooky really. Whereas I thought I had to be “normal” (pffftt) and fit in with society growing up, (which I’ve really struggled with because I had no one who knew what it was like for me) I’m pleased Ava is now in a “special” school and has friends who know what it’s like to have struggles and who she can talk to if it gets her down when she’s older. She has me too, and I’ll be more than happy to help her if she has any questions or is struggling a little bit. I know we have the support of family and friends but there is nothing better than talking to someone who knows what it’s like personally and has been through it before you. Society has to fit around you not the other way around. 

I also have Dystonia (a muscle disorder which causes involuntary movements and shakes; I’ll do another post about it)  and Ian shocked me by saying he could help ease the shakes and involuntary movements by using light therapy; I’m not being rude but I went into that room thinking “how the hell is he going to be able to do that using a light? he’s got no chance!” Boy was I wrong! So we all squeezed into this tiny little room with a desk and a lamp. He asked me to sit down and look at a piece of card under the lamp which had the letter “X” on. He then turned the lamp on and switched between a series of colours: Red, Blue, Green and I think the other one was Yellow. While he was switching through the colours he asked me under which colour was the “X” most clear to which I said Blue. He then asked me to hold my arm out and asked me to push his arm down as he was pushing up, all the while switching colours one by one; he tested this on my mam and auntie too.It turned out that I was strongest under the blue light. I know it sounds crackers and I’m trying to write as simply as I possibly can so you can understand haha! The best is yet to come though, and for me this was the highlight of  our trip.... I experienced what it’s like to have normal hands,hands that don’t shake and form painful and weird shapes; a feeling that I haven’t had since I was 9 years old. Experiencing this for the first time in 15 years was so overwhelming that I couldn’t form words and all I could do was cry with relief. As I’m writing this I’m getting a lump in my throat and welling up. All I did was place my hands under the lamp with the blue light switched on and my shakes and weird movements just disappeared like that! *clicks fingers*. I still don’t know how it works but the first thing we did was go and buy a blue light-bulb for my bedroom. Which does work! Although it took some getting used to. After crying my eyes out and reluctantly removing my hands from the lamp we then went back out into the main part of the opticians where he held up a set of coloured lenses for me to place over my eyes so he could test all 5 of my senses.

 He compared my reactions using both the green lenses and the blue ones. I didn’t realise it at the time but I see the world completely differently to everyone else (apart from Ava probably haha!) and I know everyone sees things differently to other people but I see things drastically differently. Like I can’t see peripherally. For example, imagine you’re sitting opposite a loved one in a restaurant. Imagine you’re talking to that person. Supposedly -for want of a better word- normal people can see both the person they are talking to and the plate underneath them... I can’t. I can only focus on one thing at a time. I can either see the person or the plate, not both. Try it the next time you’re out! Even a person’s face, I can only focus on one part at a time, I can’t see the whole of a person’s face; which makes it hard to recognise emotions in other people so I misinterpret them...especially those I’m in relationships with (Sorry Daz! :)). So anyway, with the green lenses things looked awful, objects, people etc. people looked almost demonic and scary (sort of like a halloween mask) and Ian explained this was a heightened version of what I see normally and when he removed the lenses things looked practically the same as when I was using the green lenses just not as bad. He tested the rest of my senses and to cut a long story short I could not only see better but I could taste, smell, hear and my sense of touch was better. He got my mam to give me a hug and I could feel her more it was so strange. By this point we were all gobsmacked! I I feel like I’ve been cheated a little bit and that I’ve missed out on so much. Another thing that improved using the blue lenses was my balance... anyone who knows me knows that my balance is atrocious haha! I’m not very steady on my feet. I could walk and stand without being all wobbly and clumsy. It’s like someone waving a magic wand over your head and fixing every physical problem you’ve ever had! 

The only was that I can describe that appointment was amazing and I felt euphoric knowing there was a reason why I feel like I don’t fit in with other people. 

I’ll link a YouTube video to the opticians that I went to and hopefully Ian Jordan can explain it better than I just have! Thank you for reading this far and I hope I’ve explained things so it’s easily understood, it’s a definite “you had to be there” experience. 

Credit to the makers of this video and I had nothing to do with the production of these videos :). 

https://www.youtube.com/watch?v=jFjNdlDKEAY 

(sound kicks in at around 1 minute in) 

https://www.youtube.com/watch?v=ICz7I5Cor0c

(sound kicks in around 1 minute 30 seconds) 

Ian Jordan you are a miracle man! Thank you! 

[x-weareallmadeofstars-x-blog]

Mindfulness Blog Post :)

I’ve been promising to do an in-depth mindfulness blog post for a while now and I’m finally getting round to it. 

For those of you who don’t know, Mindfulness is a form of meditation that focuses on concentrating on the “here and now”. Basically most mindfulness meditations focus on your breathing or a body scan -which focuses on imagining a bright light moving over different parts of your body-. The aim is to let thoughts enter your mind, observe them and then let go. This teaches you to stop struggling with some thoughts you may have. I find that it helps with anxiety,stress and low mood. Mindfulness is very much individually led; you get to choose which form of Mindfulness you do; (Audio, visual, Kinesthestic or tactile) whichever relaxes you the most and however you learn best.

 For example:

Audio

As the title suggests you listen to soundtracks which range from soothing music/sounds to listening to someone guide through a body scan. You can find a range of these on the internet (YouTube) or from CD’s that you can buy in most shops. 

Visual

Again, as the title suggests you can look at pretty much anything an notice the little details in it. For example; I’m looking at the throw on my bed and I’m noticing all the different patterns and colours and how the light is casting shadows over different parts of it. My mentor Stephen, did this with a group of us and used a packet of Rolo’s; we had to look at the colour and pattern of them and how each of them were unique and different to everyone elses’. 

Kinesthetic or Movement

Recently, I’ve discovered “Mindfulness walking” basically you’re walking (obviously ;D) while noticing everything around you, how it feels to walk, feeling your muscles work, I do this quite often in the gym. Focusing on the movements that you make, most of the time it’s repetitive movement. It’s about noticing the movements you’re making and focusing your full attention on them. You may still find yourself losing focus and thinking about whatever is on your mind but all you have to do is re-focus and concentrate on whatever movements you are doing. 

Tactile 

This is all about the sensation of touch. As I mentioned earlier my mentor Stephen taught us to do this too (with the packet of Rolo’s). we took a Rolo each and rolled it around in our fingers and noticed how it felt; mine started to melt after a while and I didn’t really like the sensation. It can literally be done with anything you can touch/hold. For example, I have a habit of playing with my fingers when I find myself getting a bit anxious, I know some people who play with the corner of whatever top they’re wearing or with a little bit of blu-tack. 

As I said earlier, Mindfulness means different things to different people and you can choose the best option for you. 

When I first heard about Mindfulness I thought (like anyone else) “how the hell is this going to help me? I have Bipolar and this is just for people who are stressed and who lead busy lives...this doesn’t apply to me....it sounds like a load of balls” Well I was wrong. It particularly helps with my Anxiety and the intrusive thoughts that that and the low mood I experience with the Bipolar evoke. Mindfulness is about focusing on the present and not beating yourself up about your thoughts and the feelings that come about because of them. Some people use mindfulness to get 5-10 minutes in their day that is just for them, so they can relax and stay relaxed while they go on with their day.

 Mindfulness is for everybody, not just for people with a mental illness :). 

If you’ve managed to get this far and not be completely bored out of your brains then thank you! 

I’ve bought a few self help books on mindfulness and some of them have helped and some of them haven’t but the best book I’ve found is “Mindfulness for Bipolar disorder: How Mindfulness and Neuroscience can help you manage  your Bipolar symptoms” by William R. Marchand, MD. It sounds really complicated but it’s really not... it is what it says on the tin basically; all about helping you manage your symptoms and why you’re having these symptoms in the first place. 

There are loads of Miindfulness things around now, even colouring books! If you are interested though I know YouTube have lots of great videos too. Personally I like reading and listening to things.

I would like to say though, that this my personal experience practicing mindfulness and the people that I have mentioned in this post gave consent. 

Leave comments and let me know what you think :) 

Thanks for reading! 

Amy