LIFE WITH FRAGILE X SYNDROME AGE 33

I last wrote a blog post on this when I was 31 so I thought it was time to write an updated one.

Job Hunting

This is frustrating, I've struggled with job hunting since school/college and I've only had 4 paid jobs which were all temporary and led to nothing. I didn't like 3 of them as one was 2 buses away which was a Christmas job, the other Christmas job was only one bus and I had another temp job also there too and my last job was walkable which was better but again it was only temp. I've never really had support when it comes to job hunting the jobcentre have been awful when I was on jobseekers I was sanctioned a lot and someone came to my house which was absolutely horrible. They don't help people with disabilities at all, I was picked on, had some horrible advisors and no help at all. When one of my jobs ended I had to reluctantly go back and go on a new benefit which was universal credit and I've been on it since. I am currently getting help from another company which started last year which is going okay and it has been helpful but I am looking into other options as applying for retail is pointless now. I need to try other things and widen my search and see what's out there. Job hunting has been so difficult for me and I don't understand why I can't get a job? It's unfair the way things are, the way I've been treated in the past and lack of support. There needs to be more help and guidance for people with learning disabilities who can work and want to work.

Confidence

I have gained confidence through volunteering and I do feel more confident but I also have the fear of the unknown when it comes to trying new things. I need to work on that and think actually I will try and if I don't like it then I can stop and find something else.

Volunteering

I started volunteering again because I felt at the time I wasn't any nearer to finding a job and I've been there since September last year. It's going well, I've met new people, talk to people and it gets me out the house for a few hours a week.

Making Friends

I don't have any friends and sometimes it's hard because I do wish I had maybe one or two friends. As I've got older it is more difficult to make friends, I don't keep in contact with anyone from school or college. I tried to make friends through a service that helped people with disabilities to meet people and while I did somethings through it, I didn't make friends and I stopped using the service and it's since going to close. I thought if I got a job I'd make friends but that doesn't always happen either.

Thanks for reading.

FINDING A JOB WHEN YOU HAVE A LEARNING DISABILITY

There are many challenges when it comes to job hunting the searching,the applying and going to interviews all these things are difficult and take time and it's even harder for people like me who have a learning disability. I have Fragile X Syndrome which is a genetic condition this affects me with making eye contact even though I am listening, meeting new people, being in busy places and being anxious.

I volunteered at a charity shop for 9 years which helped me gain confidence,come out my shell and I become less shy I loved it and met some great people who I do still see now and then.When the pandemic hit I gave it up because all the good people left and I didn't like it as much.

Sometimes I say no to things and I know that I am allowed to but sometimes I feel under pressure to take up things even if they're not for me.I am trying my best to find paid employment but sometimes I feel like people don't listen to me and suggest unsuitable jobs which makes me feel like they don't think I'm trying even though I am. I've been trying for so long and it's tedious and draining but I keep positive and plodding on.

I just want a job I can get to specifically where I live but if not then on a bus route with suitable hours in the DAY. I'm trying to make things easy for myself but it sometimes feels like people are making things difficult and it's not helping. My first job was a Christmas one which was working in a supermarket it was alright but no one really spoke to me and I was glad when it was over. My next job was another Christmas one in Chelmsford which wasn't ideal at all but at the time it was a job and experience but again no one spoke to me. The job after that wasn't as far but I didn't really like it after I had an issue no one helped me with. All the paid jobs I've had haven't got me a job now which I don't understand? I sometimes feel like I'm being discriminated.

When I go to interviews I always feel judged and under pressure to be outgoing and really confident and while I have some confidence I am not very outgoing. I am more than capable of working with the right support and guidance. These days interviews are so difficult and nerve racking I wish they weren't a thing because they don't mean anything purely based on answering questions that are hard. I think they should give a paid trail and see how people work. Anyone who has learning disabilities deserves to work and have a supportive employer and colleagues.

Thanks for reading.

 

LIFE WITH FRAGILE X SYNDROME AGE 31

I last wrote one of these posts when I was 28 and I thought I would write an updated one age 31 as things have changed since then.

Making Friends

I don't have friends, I thought if I got a job then I'd meet people and make friends, but I haven't got a job, so I've not made friends. I spend a lot of my time by myself which I don't mind but sometimes I wish I had friends. Meeting people and making friends is difficult for me because I'm shy and I don't look at people. It's also lot harder when you get older, I don't keep in contact with anyone from school or college and I didn't make friends at my past jobs either. There aren't really any clubs here I could join either which would be helpful. 

Confidence

I think I've gained more confidence since doing volunteering and going to reed to get extra help and support. I've also been using the phone more which might not seem like a big deal to some, but it is to me. I've never had to use the phone, I never answered it at the charity shop I still don't like using the phone much, but I do sometimes have to use it.

Finding a Job 

I'm still unemployed and still trying I've had some interviews which I thought went well but I was still unsuccessful. I apply for what I can but a lot of jobs are unsuitable hours so I can't get there or get home which is annoying but that's what retail is. I don't know what else I could do, being unemployed is really tough and it's got even worse since the pandemic. I haven't been going to the jobcentre as they said I could have phone calls; due to the cost of living I didn't know I could at the time but it's better for me, so I don't have to pay £5 return for the bus every 2 weeks.

Online Course

I completed an online course on zoom which was through reed, it went well, I learnt more about customer service, met people virtually and gained confidence even though it was on zoom. I am glad I took part, it helped me, and it will look good on my Cv. I've done many other courses in the past which have been okay, but they didn't get me a job.

Reed

I've been getting help from Reed since this year and it's been going well, I've been to different sessions to help me which I have found useful such as interview help, job club, a catering and hospitality and a confidence session.

Volunteering

I stopped volunteering at the charity shop I was at for 9 years in 2020 when the pandemic hit, it was at the time we got a new manager who I don't know and I lost interest in it, the people who were there left so it wasn't fun anymore. In 2021 I began volunteering at the local cinema theatre where I'm still there but to be honest I've lost interest in that now because there isn't enough to do, there's always too many of us and I feel like a spare part. It has helped me to meet people, gain confidence and try new things, I did do a first aid session which I thought was good.

I hope you found this post helpful 

Thanks for reading.

FRAGILE X AWARENESS DAY 2021

Today is Fragile X awareness day here are some facts about it and how it effects me. Please feel free to share this blog post to make more people aware of Fragile X.

About Me

I'm 30, I am currently unemployed and really keen to find paid employment I have struggled with finding a job since I left school/college. I have done volunteering in a charity shop which helped me come out my shell and I currently volunteer at the Empire Theatre which is helping me meet people. I find giving eye contact hard, I can be shy and I find maths hard but that's not important! I can also be anxious and I find it hard to start a conversation and I can be sensitive.

• Fragile X is an inherited learning disability
• We don't like maths
• It's found in 4,000 males and about one in every 8,000 females.
• We avoid eye contact
• We get anxious in social situations
• Fragile X affects everyone differently
• Fragile X is the most common known inherited cause of learning disabilities yet so often goes undiagnosed
•  1 in 250 females and 1 in 600 males are carriers of the Fragile X permutation
•  Fragile X is an inherited condition characterised by a change to a gene on the X chromosome

Thanks for reading.

FRAGILE X SYNDROME MAKING FRIENDS

Making friends has always been hard for me I struggled at school and college I wasn't sociable; I was the quiet and shy one and spent time on my own. I was bullied and did nothing about it because I didn't have the confidence to speak up, so I just put up with it.  After I left school and went to college I met new people, but I was still the quiet one who kept herself to herself.  I started volunteering in 2010 in a charity shop which Mencap helped me get and when I first started, I didn't know what to do with myself, I felt awkward, and I wanted to quit but I stuck at it for 9 years in between having 3 paid jobs. I met new people at volunteering and after some time I came out my shell, started to speak more and I gained confidence. When I got my first paid job in 2011, I didn't make friends, and no one really spoke to me, and I just did the job then it ended because it was a Christmas one. In 2015 I got another Christmas job which was 2 buses away (not ideal) but at the time it was a job I met people, but I didn't make friends. After that I was still volunteering and not much was happening but in 2017, I got another job which was ideal and I did like it apart from one incident, I met people and spoke to them but again I didn't make friends to keep in contact with. 

Having Fragile X Syndrome, a learning disability makes things harder, I find it difficult to strike up a conversation first, can't give eye contact and feel awkward in some situations. I come across as shy, quiet and withdrawn but once you get to know me, I find it easier to make conversations and while I won't always give eye contact, I am listening. I think if I'd got a job by now, I would've met people and made friends but unfortunately that hasn't happened and I've no idea what I'm going to do. I wish people would stop suggesting voluntary work because I did that for 9 years, I think that's long enough, and I deserve a paid job now. It would be nice to meet new people who share similar interests to me and are similar age. I'd also like to meet people who have Fragile X Syndrome so we could chat about how things are hard for us etc. I just don't know how or where to meet people as we're still in a pandemic and I can't get a job as so many businesses have gone or are making cuts.

I do try to be positive but sometimes it's hard and I know others have it worse, but I am allowed to feel down. I don't know what will happen in the next few months, but we'll cross that bridge when we get there. 

Anyway, thanks for reading and I'll be back with more posts soon.

LIFE WITH FRAGILE X SYNDROME DURING LOCKDOWN

I've been sharing how my weeks have been on lockdown and today I thought I'd share what it's like having Fragile X Syndrome (a learning disability). Leave a comment if you relate or if you have Fragile X or if you know someone who does. Feel free to share as well on your social media if you wish. Just so you know I still live at home with my parents.

How I Feel
I have felt more anxious than I used to before this started but going for walks everyday or most days helps. I have good and bad days and some I'm more bored and others I'm more productive but I know that not everyday needs to be the same. The times I've felt anxious are when going to supermarkets and queuing up, paying and making sure I'm in the right place and following signs. There was a time when we went to Lidl and there wasn't anyone on the door so everyone could go in. Then there were too many people and when it came to queueing it was really long and I felt hot and anxious. 

How I Cope
I think I am coping ok apart from the one day I cried on week 4 but I showered and put makeup on which helped I think things just got to me and my emotions needed to come out. I have some positive days but that's not always the case everyday and that's okay because we can't be like that all the time. It has been hard to adjust to being in lockdown and finding things to do.

What Helps Me
Colouring- I have a lot of colouring books and colouring pencils I got from the charity shops before this. I enjoy colouring in the pictures and taking my mind off things and getting off my phone. I do wish I could draw though!.

Walks-I enjoy going for walks most days getting fresh air, exploring and taking photos makes me feel good.

Netflix- I mostly watch true crime documentaries on there but I have found some good space documentaries as well now that I've got into space after the international space station went over. I don't really understand space but it's interesting. I sometimes watch the big bang theory for the millionth time or I have been watching films or other documentaries. I have got tiger king to watch I've seen mixed reviews but I'll give it a whirl.

Now Tv (thanks to my sister)- Sky crime has some good things on and Sky witness has law and order special victims unit but they haven't added seasons 18,19 and 20 so I can't finish it which now would be a good time!. I also watch Chicago med on Sky witness. I like watching teen mom UK which I don't relate to but still like it!.

Listening to music- This makes me feel better! I like a range of music from Little Mix to musicals to really cheesy songs to Whitney Houston.

Baking- I like to bake and eat so this is a good one! I make good brownies! and I also make sticky toffee puddings, mini cakes and sometimes flapjack. I like cooking other things too such as spaghetti Bolognese, risotto, lasagne and enchiladas to name some.

Organising- I like organising my things such as my makeup/skincare, my clothes etc I like things to have a home. I feel better when I've tided up and things are away but it's hard when you've done it all! haha.

Thanks for reading.

BEING 28 AND HAVING FRAGILE X SYNDROME

I haven't published in a while due to no ideas or inspiration and to be honest I still don't really have any but today I thought I'd try and write an update to my previous post linked below on being 25 and having Fragile X which I wrote in 2016.

Job Hunting
I am still looking for a job which I didn't think I'd be saying but here I am! sometimes I hate it and sometimes I don't, but it hasn't been easy. I don't get much help from the jobcentre they either try to put me on things that are hard to get to or find jobs that I don't want to do. I've been going to the jobcentre on and off since I left college and having a few jobs in between. I try my best but applying for jobs is draining and it isn't nice when you get rejections, or you get rejected before you've even sent the application. I also hate that some companies have questionnaires as a way of applying which isn't fair at all and gives you no idea of the person! I'm looking at you Boots, Next and Lidl if there's any more than do tell me. A lot of companies seem to make a simple job sound so complicated and it's ridiculous because they're always advertising so why not just take me on! I know what I'm doing.

Volunteering
I quit volunteering last year as I wanted to concentrate on finding a job but as that hasn't really turned out I decided to go back one day a week. I wasn't planning to as I have been there 8 years now which is a LONG time to be in a UNPAID job, I really thought I'd have one by now. It does help to get out the house to see people, but I really want a paid job.

Everyday Life
I do struggle with some things such a maths not that I do any only with a calculator and meeting people. I sometimes feel under pressure for example from the jobcentre to do things or they just put me on things without asking. It makes me feel anxious and worried because I don't feel comfortable doing these things. They need to be more understanding of people with disabilities.

My Other Post
https://sarahbobbeal.blogspot.com/2016/08/being-25-and-having-fragile-x.html

Thanks for reading.

FRAGILE X SERIES: WELCOME

Welcome to my new blog series all about my disability Fragile X I have written many posts on this before but I wanted to write a series but I keep debating what subjects to write about! anyway I decided I would do a series on Fragile X Syndrome and see how I get on!. I will be posting everyday starting Monday 27th until Thursday 30th at 9am.

Here's What's Coming

10 Facts

Employment

Daily struggles

Not letting Fragile X stop me from achieving

I hope you like this series

FRAGILE X SYNDROME Q&A

Welcome to my Fragile X Q&A post! I've wanted to write a Q&A for a while but no one ever asked questions so the Fragile X Society helped me with this and I got a few questions so here are my answers. Thank you to everyone who asked me a question.

1. What things do you find most difficult?

Maths, job interviews, making friends, finding employment and confidence.

2. Is there certain areas of adult life you feel you need more support with. X

Employment and job interviews which I have had support with in the past. I now get help from my one to one sessions which I started last year.

3. I have a soon to be 11 year old daughter with Fragile X, is there anything you would tell your 11 year old self that you wish you had known back then?

I wish my school teachers were more helpful and understanding when it came to Fragile X because I found the work difficult which made me fall behind. I think schools, colleges etc need to be more aware and know about Fragile X and any other disabilities.

4. My toddler was diagnosed with Fragile X in October. Can you tell me what life was like for you as a child? How can I best support him?

I struggled at both primary and secondary school the teachers didn't know much about Fragile X so my advice would be keep on at them for when he starts school or nursery so they are aware of what it is and how it affects him daily.

5. Can you tell me if you and your family had heard of Fragile X before diagnosis and did that affect how you all felt about the situation?

No, my parents hadn't heard of Fragile X before it was new to them and me and yes it did affect the situation because they didn't know how I was going to cope with things such as school etc. 

6. How does Fragile X effect your everyday life?

The things that effect me everyday are being social and communicating with others.

7. What advice would you give to a younger girl with Fragile X?

Don't give up, ask for help, be yourself and don't let anyone tell you, you can't achieve something!.

Thanks for reading.

FRAGILE X SYNDROME BEING A BARRIER

I believe having Fragile X Syndrome is a barrier for me when it comes to job hunting because I am shy, quiet and withdrawn and not very outgoing. Which means employers don't see that I can do a job and take on someone else.When I have interviews I'm nervous but isn't everyone? I get stuck on questions and don't know how to answer them because I don't always understand or I get my words muddled up.

Having Fragile X does make things difficult for me I struggle with maths (not that I want to work on that!) and meeting people isn't always easy. I don't have many friends to go out with but at the same time I do like my own company!. Employers don't give people like me a chance because they don't think I'd be any good so they take on other people. Then some time later the same company is advertising again it doesn't make sense? I have skills and experience but they make a simple job sound so hard which is ridiculous how do I get more experience if no one will employ me?

I do get interviews which I know is good but I find them hard because they ask difficult questions that I don't understand or find hard to answer so I either don't hear back or it's a no. I've applied for so many jobs and most of the time I get a no and its more or less the same answer you don't have enough experience but how do I get more experience if no one will employ me?. I believe everyone has to start somewhere and I believe I should be given a chance because I can do things.

I do take as much help as I can because I think it's good while it's there and I know I've done many courses in my time some have helped and others not but we'll see. I do try my best but sometimes I feel like giving up because I don't think I'm getting anywhere. I also feel behind because I haven't got a job and most people my age have had many and I've only had temp ones. I did feel used I just don't think shops need to be open at Christmas it's ridiculous people should be at home eating turkey and  chocolate.

Thanks for reading.

BLOGTOBER DAY 10: FRAGILE X SYNDROME AWARENESS DAY

Today's post is all about Fragile X awareness day! as it's in October I thought I would mix it up and share my experiences, struggles and facts about Fragile X. I was diagnosed at 8 years old with Fragile X Syndrome which is a learning disability. This means I struggle with maths, shyness, being social/making eye contact and finding a job to name a few things.

5 Important Facts

1. Fragile X is the most common cause of inherited learning disability.

2. About 160,000 people are affected by Fragile x Syndrome.

3. Fragile X Syndrome affects boys more than girls.

4. It's found in 4,000 males and about one in every 8,000 females

5. Fragile X Syndrome is a genetic condition that can cause delays in learning, language and social skills. It can also cause autism.

If you want more information then check out the Fragile X Syndrome website here
http://www.fragilex.org.uk/

Thanks for reading.

FRAGILE X SYNDROME:BEING SOCIAL ONLINE AND OFFLINE

I've written many posts on Fragile X but I thought I would share how being sociable and making friends is hard for me. I struggle with being sociable, so making friends online and offline is difficult for me and sometimes wish I had some friends but I find it hard. I started blogging in 2015 and I've not made any friends from it because I'm shy even online. I find it hard to interact with people, so I don't really comment on blog posts because I don't know what to say.

I sometimes think people might think I'm rude but I'm not I just find it hard to speak first so when I see someone I know and they're talking to someone else I don't interrupt and just wait if they see me or I walk past. I sometimes feel awkward or judged at places like the other day when I got my eyebrows waxed I went in and the therapist was talking to someone else,then made them a drink and then spoke to me. I felt awkward being in there because I'm shy and when my appointment ended I felt judged.

I am currently doing a confidence course which I hope helps me and I gain something from it don't get me wrong I do have some confidence but I feel more confidence when I'm at certain places like volunteering. I just want some confidence to help me with job hunting and interviews because these days they make them so hard and I don't always understand the questions.

Thanks for reading 

Check out my other posts on Fragile X in the categories list.

LET'S CHAT ABOUT: FRAGILE X SYNDROME

As I've got back into writing my lets chat series I decided to write about Fragile x, I have posted many posts before so be sure to check them out. Anyway on with today's post I hope you like it and this little series.

What Is Fragile X?
Fragile x syndrome is a genetic learning disability which affects boys and girls. It affects everyone differently and some have it worse then others. I was diagnosed at about 8 years old and I've struggled with school, college and employment etc. It affects around 1 in 4000 boys and men, as well as 1 in 6000 girls and women.

How Does It Affect Me?
I struggle with maths and numbers I can't add up in my head or write it down I passed my GCSE with a G so I guess that's better than a fail!. I also find it hard to meet people, be sociable and I can be shy at times too. I never really have any luck with employment either it's something I didn't think I would struggle as much as I did/do now. I can get interviews but can never get past that stage they make a simple job sound so complicated and it's always the same reply other people have more experience its just a vicious circle. So how do I get experience if I don't get a chance?. It is hard to find a job with a disability and while I only have fragile x mild it still affects me and I wish that some things were easier.

Bullying
I was bullied throughout school I didn't have friends ,no one wanted to be my friend and I just hated it. I struggled with the work and I was always behind. After I left school I went to college but still got bullied there but the last course I did was ok I made friends and I enjoyed it.

Volunteering
When I began volunteering back in 2010 I didn't think I'd still be there 7 years later! it wasn't my plan at all but it has helped with confidence and coming out my shell. My manager at the time was a huge help and now he's left it's not the same and I miss him lots :(. I do wish I had a paid job though as it would be better! I want to meet people and earn my own money.

Thanks for reading.

FRAGILE X SYNDROME Q&A

I thought this post would be a good idea, well I still think it is but no one asked any questions which is annoying because I thought people would want to help. Anyway, I'm still going to post it because it's important.

1.How do you cope with having Fragile x?
I cope in different ways so for example I get upset easily or I bite my nails when I'm anxious or nervous.

2.Do you find being sociable hard?
Yes, because meeting new people is hard, and I always feel nervous and anxious.

3.How old were you when you were diagnosed?
I believe I was 8.

4.What do you find most difficult?
Meeting people, maths, job interviews, finding a job etc.

5.How was school/college?
School wasn't a good time for me I was bullied a lot and college was ok, I made friends (who aren't my friends now) but I was picked on by 2 girls one was someone I went to school with.

6.How has finding a job been?
VERY hard and it still is the jobcentre are useless and don't know what to do with people.

7.How did you get into volunteering and how did it help?
I got my volunteering role through Mencap back in 2010 I think, and I've been there for 7 years. It's really helped me come out my shell and my manager helped a lot (he's since left sad face) he was the best manager and I miss him a lot.

8.How do you cope in difficult situations?
It depends on what is it but sometimes I cry, get frustrated and angry.

9.How do you find interviews?
Very hard the questions are sometimes difficult to answer, and I get stuck. I just wish they didn't ask such stupid questions and just give me a chance.

10.what's your advice for someone else who has Fragile x?
Don't give up! you can achieve anything you put your mind to and don't let anyone tell you different.

Thanks for reading.

FRAGILE X SYNDROME

I've had this post drafted for ages because I don't know what to call it but I really want to get it finished so here I am hoping to publish this today!. I've written many posts about having Fragile X and they've all done so well which I'm glad about. I like to know I'm helping others and it's good to know I can relate to others, I don't feel so alone as I know others are in the same boat as me. As it's Fragile X awareness day today I think it's a good time to post it.

Finding A Job.

It hasn't been easy for me to find a job when I left school I went to college and then when that ended I had to sign on and ever since then it's been hard to find a job. I think my first proper job well temp one was at Sainsbury's at Christmas in 2011, then that ended and I was unemployed until I got another Christmas job at M&S in 2015. I applied for a job as a marketing assistant in 2016 the job was dealing with probate etc, I didn't think anything of it until I got invited to an interview so off I went and got the job the same day! then the start date came around in January 2017 and it all went downhill from there. I found it hard, I didn't get any help or support and they didn't understand Fragile X. I didn't really like the people and felt left out because this other girl was there more than me and they bonded.

Fragile X Research.
I took part in Fragile x research in Edinburgh in June for a MRI scan but I didn't have it done because I panicked and felt anxious and claustrophobic. It really upset me and I felt so silly for going all that way with my mum. It bothered me afterwards because I wanted to have it done but I just couldn't. I took part in other research but still felt like I was a let down.

How I Feel Day To Day.
Sometimes I'm quiet and don't say a lot if someone or something bothers me, sometimes it's stupid but I can't help it. I also find it hard to explain what Fragile X is so I try and avoid that but I do try and tell people. I sometimes don't always look at people in the eye but I do occasionally, though I think I'm getting better at it now. I really find it hard to ask for help with things because I feel silly even asking something simple I don't know why I find it hard but I get worried and scared. When the bus doesn't show up it throws me off because then I don't know what to do and I panic I'm going to be late for work etc. I don't like lifts much I try and avoid them at all costs because I hate small spaces I panic and feel anxious. I don't even like using public toilets.

Meeting People.
I find it hard meeting people and striking up conversation because I'm shy and quiet and I find it hard to start talking. I don't like being around drunk people and I'm not keen on alcohol either I feel uncomfortable around drunks.

I hope you liked this post

Thanks for reading

FRAGILE X RESEARCH TRIP TO EDINBURGH SCOTLAND

As many people know I have Fragile X a learning disability you can read more here http://sarahbobbeal.blogspot.co.uk/2015/02/my-disability-fragile-x-syndrome.html and so when my mum got a letter through about volunteering for research in Edinburgh I thought it would be good to go to possibly help others. We booked our trains and a hotel to Scotland I also wanted to go away somewhere as I don't really go anywhere because I get travel sick :(

Day One Travelling Tuesday 6th June 2017
Me and my mum travelled from Braintree to London Liverpool Street, then we caught the tube to Euston to then get a train to Crewe and then onto Edinburgh. The journey going wasn't good at all because our train seats were backwards not good when you suffer from travel sickness :(. When we got to Crewe and got off the train in the fresh air I felt a bit better but it still wasn't nice.  We arrived at Edinburgh at about 4:30pm after a 7 hour journey. The hotel we stayed in was called Motel One and was right opposite the station and was a nice room especially the shower!. We went out to Pizza hut for dinner which was good.

Day Two Wednesday 7th June 2017
This day was the research day which was a taxi ride away at the Patrick wild centre, the scan was at a different hospital. I was really nervous and anxious about it but I thought I'd be ok after having a practise one and talking through what will happen. First I answered some questions and did some word/picture tasks some were easy and some were hard but it went okay. Then we went over to the other place for the scan I was given ear plugs, headphones and some padding around my had, then there was a thing that goes over the face and then some binoculars which shows pictures and I had to press a button. When I first went in the scanner I really panicked and had a button to press because I wanted to get out. I felt claustrophobic,my heart was racing and my hands were sweaty and I felt scared. I then got the option to have the scan without the thing over my face but I still felt panicky and anxious, I got upset a few times during this and afterwards when I'd decided I didn't want it done after all I felt like I'd let people down and just felt over whelmed. After we had been there we went onto visit the castle which was good and the weather was good! (the best day) the castle was interesting my favourite part was the prisons (I've watched a lot of docs!). We then went back to our hotel and then went out to look for somewhere for dinner and ended up in the filling station which was really nice!.

Day Three Thursday 8th June 2017
It rained for most of the day! oh bother anyway we went shopping, looked around a money museum and had a little bite to eat in patisserie Valerie. I bought 2 Cath Kidston bags (I'd never been in there before!) one was from the Disney 101 Dalmatian collection and the other was a blue bag with ducks on and I also got a purse/little bag these ones were in the sale. In the evening we went to Prezzo for dinner which was nice.

Day Four Friday 9th June 2017
Going home day :( our first train of the day was at 10am so we had to be up and ready, we had breakfast in this little cheap café around the corner it was ok but there was water on the floor and the delivery was everywhere so not really ideal but ah well. The train journey home was much better because we had face forwarding seats I listened to my music and just looked out the window so I didn't feel funny. I also napped a lot! well it was a 10 hour journey home. We got to Peterborough and had a few hours wait for the next train to Ipswich, then we got to Witham and then had to wait again for the train to Braintree and then we got a taxi back home at 9pm! such a long day!.

I had a good time despite the weather but that's Scotland for you! I would go back again and possibly take part in other Fragile X research should they do any.

Anyway feel free to leave comments and share, you can also follow me on X sarahbobbeal

Thanks for reading and I'll be back soon with more posts.

FRAGILE X: MEETING NEW PEOPLE

I've written a lot of posts on Fragile X and to be honest I've probably mentioned most things by now! but then I had a thought I could write about meeting new people and how I find interacting with other people.

Fragile X makes it harder for me to speak to people who I don't know so I tend to just keep myself to myself. I have always found it hard meeting new people; I get shy and nervous and really never know what to say. I had a difficult time at school as I was the quiet one, I got bullied and found it hard making friends. This was similar to college, but it wasn't as bad, I made friends, but I did find the work hard.

I find it hard talking to girls and interacting with them as they can be bitchy and clicky (it was like this at school and college) they never want to be my friend because I'm quiet and don't say anything. I find it hard to speak up in groups especially interviews, I also can't go up to someone and introduce myself. I feel uncomfortable when I'm in unknown places with people I don't know.

I recently had a marketing job and found that so hard making calls to the general public. It's honestly the hardest thing to do because most people aren't interested or aren't even home, and then there's the rude ones but I guess we are all like that when we get these sorts of calls at home. I found the interview ok as it was just me and another girl instead of a group one.

Since being at volunteering for 6 years now I have really come out my shell and it's made a huge difference to me. I now talk to the customers which is something I didn't think I'd do, don't get me wrong I do like meeting people, but it just takes me a while to come out my shell.

I think this goes for the same as blogging I find it hard to interact with other bloggers online, so I tend to just not to. I find some girls can be quite clicky and as they already have their group, I would feel awkward. I know not all girls are like this and there are some genuine ones out there I just wish it was easy for me to make friends/talk to new people.

I hope you liked this post be sure to leave comments or follow me on X sarahbobbeal

Thanks for reading

xxx

4 EVERYDAY FRAGILE X STRUGGLES

This idea came to me last night about my struggles with having Fragile X, so I thought I'd share what mine are and how they affect me. If you relate to any then be sure to leave a comment or tweet me @sarahbobbeal I'd love to hear.

Maths

This has always been a struggle of mine since primary school, secondary school to college I hate it and I know I'll never be good at it, but it doesn't really bother me now. I had loads of trouble with it I got help with it, but I still didn't make any difference I still don't understand it.

Explaining Fragile X
I do find this hard sometimes, but I am getting better since I began writing about it in my blog, I'm getting more aware of what it is. I don't understand it all as there's a lot more to it and it gets quite complicated plus most people haven't even heard of it so that makes it more difficult.

Meeting People
I have got better at this but sometimes it's still a struggle for me when I meet new people it's not always easy to strike up a conversation straight away. I'm not the most outgoing girl anyway so that makes it harder too but since being at volunteering I have gained a lot more confidence and I talk to people more which I never used to.

Interviews
These are difficult end of I hate them I've always found them hard especially when meeting someone for the first time. I never know what to wear most of the time I feel overdressed when the interviewer is wearing jeans. I also get my words muddled up and find it difficult answering questions and giving eye contact.

Thanks for reading.

FRAGILE X AWKWARDNESS

Having Fragile X comes with its difficulties feeling awkward is one of them well for me anyway I thought I would share where I feel out of place and awkward.

 If you relate to any of this post, then please leave a comment and I'll reply :)

Posh Restaurants/Out My Comfort Zone
Going to these sorts of places or places you have to wear fancy clothes such as Jamie's Italian I feel so out of place, very awkward and uncomfortable. These places aren't for me, and I always dread going because I feel like I'm being judged. When I went for afternoon tea at the Barn Brasserie, I didn't really enjoy it because I'm not posh and I felt so awkward and out my comfort zone.

Shopping
When I go into a clothes shop where there's girl assistants (who wear way too much makeup) I feel like I'm being judged whether I buy something or not and I feel so out of place like I'm not meant to be there. They keep looking at me and I feel uneasy being in there or when I pay for something I feel like that.

Parties My Worst Nightmare/Pubs/Clubs
I've never been into parties or sitting in the pub for that matter they've never been my thing and I try to avoid them as much as possible. I feel out of place and because I don't drink, I always feel like people are judging me. I really don't like being around people who do drink I'm not the most sociable person anyway, so parties aren't my thing and I very rarely get invited to any which is fine by me.

Meeting New People
I've never been a good at this, but I have improved since volunteering and having Xmas jobs but overall, I sometimes still find it hard meeting people. I'm quite shy and withdrawn so I tend to not say a lot, or I fiddle with my hands or bite my nails (which I haven't in a while since getting them done professionally).

Thanks for reading.

FRAGILE X AWARENESS DAY 10 IMPORTANT FACTS

I got asked to write a post for Fragile X awareness day which is today Monday 10th October 2016 and I would like to make more people aware of it.

1.Fragile X is a learning disability.

2.It's found in 4,000 males and about one in every 8,000 females.

3.Fragile X is an inherited condition.

4.Fragile X affects everyone differently.

5.Symptoms are often milder in females than in males.

6.1 in 250 females and 1 in 600 males are carriers of the fragile X permutation.

7.Avoiding eye contact.

8.Anxiety in social situations.

9.Fragile X is the most common known inherited cause of learning disabilities.

10. Fragile X is an inherited condition characterised by a change to a gene on the X chromosome.

*MORE INFORMATION*

You can find more details here about Fragile X http://www.fragilex.org.uk/syndrome

And also check out my other blog posts linked down below.

http://sarahbobbeal.blogspot.co.uk/2016/08/being-25-and-having-fragile-x.html

http://sarahbobbeal.blogspot.co.uk/2015/05/my-fragile-x-syndrome-experiences.html

http://sarahbobbeal.blogspot.co.uk/2015/02/my-disability-fragile-x-syndrome.html

Thanks for reading.