Why I nearly gave up blogging....

It has been around 10 months since I last posted a blog, and for a long time I was adamant that I never would again. To say this last year was difficult would be an understatement, and one that I definitely needed time to concentrate and process.

The last few months have been the most horrendous and difficult time that I think I will ever go through. For those that are unaware, on 5th March 2019 at approximately 10AM my beautiful and wonderful mother passed away from cancer at the age of 58. Just 11 days before her birthday, and 20 days before mine. Her cancer battle was a short, but extremely difficult one. 

After becoming unwell towards the end of 2018, she was diagnosed with cancer just a few days before Christmas and within 10 weeks she was gone. She had been poorly for a few weeks but was deteriorating by the day and in my heart, I knew that it would be the last Christmas we would ever have with her. And It was extremely difficult to put on a brave face. How could we go from Christmas shopping a few weeks before, to finding out she had terminal cancer? My whole world had turned upside down.

When Mum was diagnosed, I found myself thrown into a constant state of worry, exhaustion and anxiety. My relationship with her had totally changed, while I tried to keep things as normal as possible, her level of care completely changed, and I found that our roles had become reversed. After all the years Mum had cared for me, I found myself becoming the carer along with my father.

Everything seemed to be happening so quick. By New Years, she was rushed back into hospital and we very nearly lost her. Thankfully she managed to pull through, however we knew that we had a long road ahead. 

Suddenly, I felt the weight of the world on my shoulders, and the new responsibilities I now had. This woman who cared for me during my darkest days, who carried me down the stairs when I couldn’t walk. The woman who would push me in my wheelchair when I needed to go out. The woman who would pick me up when I was down. The woman who dried my tears and told me that everything would always work out, suddenly needed all that from me. And although I never showed it, it absolutely terrified me. How would I cope without the woman who has been my rock for the last 22 years of my life?

Alongside the stress of caring and dealing with the fact that my mother is terminally ill, I also had to deal with the normal stresses that come with having EDS, maintain my university grades and work! I can honestly say that within just a few short weeks, I found myself totally burnout and drained. And although we knew Mum was terminally ill, and we never really expected her to go as quick as she did. 

At that time, her battle felt like a lifetime and I found myself feeling a mixture of emotions- relief that she was no longer in any more pain, but a profound yearning for her to just give me a hug. 

Here I am, 9 months later, and while the grief and emotions aren't as raw as they were, I am still going through so many emotional experiences that I never thought I would at this stage. It has taken me until now to be able to fully address the trauma and upset that has happened over the last few months, as it is surprising how grief can affect you. I had lost so much confidence and have missed out on so many opportunities because of my grief. And it has taken until now to realise, that my mother wouldn’t want this for me. She would want me to be grabbing life by the hands and embracing every opportunity like I had done before. And I will do, again.

For something that is so common as death, there is very little support or information about the subject of grief. People suddenly expect you to get back to normal very quickly, to try to move on and repress how you feel as it isn’t "appropriate". It doesn’t seem right to me that, in 2019, we still have the attitude that we must "move on" and as such, I definitely plan to do more blog posts and hopefully some volunteer work to address the stigma of grief and death.

"No one ever told me that grief felt so much like fear" C.S Lewis

Things they don't tell you when you have a chronic illness

I always pride myself for being "real" with my blog and in real life also. I try to be positive and always achieve the best I can with my disability, but there are definitely times where I struggle. Then I started to think of all the things they don't tell you when you have a chronic illness.

One of the most scary things about having a chronic illness can definitely be the unpredictability – you never know what each day may bring. And this can be even more scary when you have a condition like EDS. Ehlers Danlos Syndrome is connective tissue disease, causing problems with the muscles and ligaments surrounding the joints.... But there is so much more to it than that.

The abundance of symptoms and fear it causes can be overwhelming, and almost feel like it is never ending, and that is just the physical symptoms. But no one ever tells you about the emotional and practical sides of having a chronic illness.

Like the fear of not being taken seriously by a medical professional who isn’t educated in EDS. The fear of being dismissed, or not believed or undermined. The anxiety of going to your next doctors appointment because all the times you have gone before you have left in a distressed state, crying and feeling so helpless. And the dread of what will happen next time.

 Like the fear of not knowing how you will be from one day to the next. The thought of knowing that you will never be the "healthy" person that you once were. The look of concern on your loved ones faces and the fear in their eyes as they can see you deteriorate each day. The fear of unknown, yet knowing that you will never be better than you are in this moment. Being scared of the future, not knowing whether things will get better- Will I have a career? A family? Friends? Will I walk again? Will I ever be pain free again?

Then there is the depression. A condition so painful that it feels almost incurable, and just as bad as the chronic illness itself. Grieving for the "old" you, for all the things you could do but now can only dream of. Grieving for the loss of friends and family that don't believe you, or think you are exaggerating, or are simply to busy to deal with someone who "can't go out." Being in a constant state of surviving not thriving. The frustration and shame of not being able to do the things you could do so easily, and the guilt of being a burden to others. 

Being chronically ill definitely changes you. It changes your outlook, your goals and perspective on life. Sometimes this can be a good thing for some people, and it can open up a whole world that you didn't even know was there. Don't get me wrong, there are definitely days where I wish I was "normal" but then, I wouldn't have the friends that I do, the career, the opportunities, and I certainly would not have got to meet the people I have met.

Yes, there are dark times living with a chronic illness. But for all the bad times, there are many more good times ahead. You just have to find them in each day.

-Sophie

xx

10 things this last year has taught me

So I have been neglecting my blogging, and sadly my charity work lately due to a family illness. But this has had me reflecting a lot on what 2018 has taught me, but more importantly, what I have gain from it. So here are 8 things I have learnt from 2018!

1. There are just as many positives from life, as there are negatives. When I look back on this year, it has quite a tough one personally but thankfully I don't see 2018 as "the worst year." I still have so many positive and wonderful memories that I will cherish forever, which unfortunately been mixed in with some terrible circumstances.

2. Dealing with other peoples attitudes on disability can be a right pain! The most frustrating thing about dealing with an invisible illness is definitely peoples unwanted opinions. To look at me, you would think there is nothing wrong. Some days are good, some days are bad which is completely normal for someone with a fluctuating CHRONIC illness. Thankfully I have heard only a few ablest comments this year, but we still have a long way to go! 



3. There is more to life that studying and stress- Which seems quite ironic coming from someone who is training to be an accountant and studying a full time business degree!

4. Physiotherapy actual works. Since i've started specialist physiotherapy 2 months, which is looking at improving the strengths of my legs and my core, I can now see a small but noticeable improvement! Something which previous physio sessions have not been able to do.

5. Baking can literally fix almost anything. Recently, anytime I have become stressed I automatically go into baking mode and it seems to be the only thing that can relax me!😂


6. "When life gives you lemons....." After having so many setbacks, it can definitely feel that life isn't on your side or that certain things are not meant to be. If you work hard enough, you can find your way around anything.


7. Blogging has definitely opened doors for me- especially when it hits 3,000 views! So many opportunities have come my way, and will hopefully continue to do so in 2019!

8. Even though it may not seem like it at times, everything will get better.

Currently 2019 is going to be one of the most busiest, stressful and difficult years of my life filled with lots of uncertainty and challenges. Thankfully with the support of family, friends and wonderful people in my life I know that things are going to be okay. Here is to 2019- hopefully a year filled with positivity, happiness and health for all, and to the year where my charity work really takes off.💓


Sophie x

When your "invisible" disability becomes "visible"

I thought that this weeks blog post would be based on using a mobility aid in work, my experiences and how I tackle unintentional ableist comments. So just to give you a little bit of background info, I have been working for over a year and only a select few know of my disability. This is not because I have tried to hide it in any way, but when there are few hundred people working at your organisation and you have an invisible disability it is kind of hard to make it visible for everyone.....unless you start using a mobility aid.


A few of weeks ago, I had subluxed my left hip and it has caused me a lot of problems. Since then the joint itself continually moves when very little pressure is applied to it, and at random times too. So sometimes I could be doing something and it could be fine, the next time i try to do that it subluxes again. Not only is this causing me a lot of pain but it is also causing me nerve pain in my left leg, sciatica, ankle instability and difficulty walking. After a lot of deliberation and seeking advice from people with EDS on Instagram I decided to give a mobility aid a try. I sent my parents up the attic to get my crutches as I haven't used them in a few years to see if that would help and safe to say it made a huge difference. After a few weeks of struggling I could finally walk around work with little pain in comparison to what I had before and felt more stable in my walking! I could come home from work and found that I had more energy than what I had in the previous weeks, and didn't feel like I was going to fall over all the time.

On the plus side, I definitely have some amazing colleagues who weren't afraid to joke here and there with me, or as I am now known as "Hop-a-long" (which I absolutely love!)Although some people may be sensitive to this, I actually love it! I have explained my condition in great detail and they are aware of what I have to deal with, they are not afraid to see the funny side or have a sense of humour. 

Overall, it has been such a positive experience for me and it helped my condition so much! I definitely wont be resisting using a mobility aid in work in the future-whatever that may be. 
However, what I don't particularly like is when complete strangers come up to me and start asking questions. Even though I work in the same place as them, I still find it slightly intrusive when people ask personal questions when in fact I don't even know their name! I try to remember that it is usually out of curiosity rather than rudeness, but I find it so hard to explain what is wrong with me as they are usually expecting me to say something like "I've sprained my ankle." How do I explain I have a debilitating genetic condition that causes my joints to dislocate at random times with someone you have never even met before? The response I usually have is an awkward "awhhhh.."


I struggled for weeks before finally using one and it was the best decision I made. It made my life so much easier, the pain and fatigue eased and it also made people realised that I am disabled. When you have an invisible disability, I think it's very easy for people to forget that you are "chronically ill" and it's so easy for it to feel like they don't understand. For anyone who is struggling and is considering using a mobility aid- just go for it!


Sophie

xx 

Hospital Appointment

I thought I might do a little bit of an update as I have been so busy these last few weeks. I have sat exams, moved out, got a new job and started my degree. Safe to say, I haven't had much time to blog. So a few weeks ago, I had a hospital appointment with the chronic pain team in my local area, and safe to say I was so nervous! I had waited well over a year for this appointment, and it definitely felt like it was one of the last chances for me to get some proper help with my EDS.

The first part of my appointment was spent sitting with a lovely nurse analysing my chronic pain form, and we spent much of our time talking about our lovely dogs and puppies. After which, I had an appointment with a different specialist nurse who has decided a plan of action for managing my EDS. (About flippin' time!)

So over the next few months I will be trialled on a different type of medication to treat not only my chronic pain, but the nerve pain and issues in my left which seems to be there constantly! Shes also decided for me to have specialist physiotherapy with someone that actually knows what Ehlers Danlos Syndrome is and how to best treat it.

It was such a change to talk to someone and actually have them listen to me! After years of going back and forth from different doctors it was definitely a change.
I will also be going on a chronic pain management programme for about 6 weeks which will consist of a team of physiotherapists, occupational therapists, psychologists and other health professionals. The waiting list is currently a year but I am so excited to start this programme. I am feeling really optimistic about the outcome. Although nothing can cure Ehlers-Danlos Syndrome and at the moment nothing can take away the pain it brings, but at least i'll finally have support from medical professionals on how to deal with it for the future.

-Sophie
xxx

Dating With a Disability- Part Two

So I thought it might be a good idea to write a blog post on my experience of dating with a disability, especially as my boyfriend Rhys post was really well received.

I asked him to write a blog post for me on what his perspective is on dating someone with a disability, and any advice he would give. Safe to say, he wrote a really amazing piece and he explained exactly the point I was trying to make.

IT IS NO DIFFERENT TO DATING A HEALTHY PERSON.

People seem to think there is some advice to give for this, but it is literally just that. If you love someone, you love them no matter what. If they are the right person they will love you and embrace and love your disability too. Don't get me wrong, it has been hard on times, especially as I sometimes feel guilty if we have to go about things a different way.
It can be hard to show when I’m having a bad day, or flare up as it means that I am showing an incredibly vulnerable side but after having a long talk with Rhys I’ve realised that it is important to show my limits. One of my biggest worries was disclosing that I used to use wheelchair, and it is always in the back of my mind that some day it will be a possibility again since i've had my EDS diagnosis.

For the past couple of weeks, I have been having an awful pain flare. I am still managing to get by in work, but between the pain in my hips and legs and managing full time employment it has just left completely exhausted. I always feel guilty if I have to cancel any plans, or rearrange especially when those plans are with Rhys. Over time I have learnt that it doesn't matter that we aren't going on long walks or out clubbing every weekend, but just the fact that we are spending time together.

So here are my tip tips on dating with a disability!

Honesty

My advice for anyone who has a disability and is dating- Just be honest!
Be completely upfront and honest about your conditions as soon as you can, but don't disclose anything you aren't comfortable with. The sooner the other person knows, the sooner you will know if they are worth sticking around!

Communication

Explain what you can and can't do. Don't push yourself for anyone. If they are the right person they will do what it takes to make sure that you are comfortable, if they are annoyed at you for not being able to do something because you are in pain- they are not a nice person!

Patience

Give the other person time to come to terms with your disability. This doesn't mean that this gives them the right to treat you any less, but it can be different experience for someone if they are not familiar with your disability or chronic illness.

Time

The only way you will truly know if they are the right person is by giving the relationship time, and that goes for whether you are chronically ill, disabled or completely healthy. Life is unpredictable and full of surprises, but the most important thing is to not give up.


-Sophie

xx

My thoughts on "Afflicted"

After seeing all the controversy surrounding the new Netflix original series “Afflicted” I thought it was only right I should watch it for myself before making any sort of comment. After watching it is safe to say, I was disappointed. Netflix, you have let us down!

For those of you that don’t know, “Afflicted” is a small documentary series set in America and is focused around the lives of a number of people with various rare chronic illnesses. Including conditions such as M.E, sensitivity disorders and lupus. All of which are seriously debilitating and painful conditions! The series contained interviews from medical professionals (primarily psychiatrists) and researchers with interviews from the sufferers and their relatives. So you would think it would at least be factually correct? No! The series manages to provided no factual evidence at all and from the start the programme puts doubt in the viewers mind as to whether these PHYSICAL conditions are actually real, or whether they are all in the patients mind.....

What made it even worse was seeing the interviews with the relatives and especially the parents who seemed to focus on their own doubts of their validity of their love ones conditions! Now, clearly this was edited, and I am sure that they spoke greatly about the conditions itself but it seems that it clearly wasn't interesting enough to make the final cut. In order to make the series more interesting and watchable they decided to play a guessing game with the viewer whether the conditions are real or all just in their heads.

Now some of you know, I have depression and I am in no way suggesting that a mental illness is any better or worse than a physical condition. They are both awful to deal with in their own ways. However, I believe that it is totally wrong for physical illnesses to be portrayed as "all in our heads" and that we are "making it up."

It was heart breaking to see the extreme suffering that these people had to go through for them to only be stigmatised and mocked in front of a global audience. I later found out that the participants of this series were initially told that they were would be a part of a “compassionate" documentary of what it is like to live with a chronic illness.

Our illnesses should not be used for your entertainment!

Netflix, you had an amazing opportunity here to spread awareness of a variety of conditions and the lack of resources that are available to treat them, yet you have turned it into a mockery. With such a widespread number of viewers, you have to take responsibility of the programmes you release and the impact that they have on the viewers. As a person with an invisible disability, it was extremely hard to watch. We are already a marginalised community but programmes like this only isolates us further. Shame on you.

Sophie

xx

The negative side of results day!

So it is nearly that time of year again- GCSE and A level results!

This time of year is always particularly stressful for young students, but it is even more stressful if you are chronically ill and disabled. Believe me I have had my fair share of "highs" and "lows" when it comes to achieving my results, so here are 5 tips to go by.


Firstly...

1. It is not the end of the world.

Many students and teachers seem to believe that if you don't have your life figured  out by 18, then you are somehow are not going to achieve great things. If you don't go to university, you are a failure, you are stupid, incompetent, you will never get a job. But the reality of the world outside education is far from this. There are so many alternatives that are under looked, but are so beneficial for young people today.

2. Alternatives to university?

One of the biggest alternatives to university, is an apprenticeship. I am currently coming towards the end of my business administration apprenticeship, and I can honestly say it has been the best thing for me. It has allowed me to complete a qualification at my own pace and being paid to do it as well! What is even better about this is that while being employed as an apprentice, we still have the same rights as regular workers. It is highly important to find a supportive employer, especially if full time is something you might struggle with.

3. Clearing

So, you didn't get the results you were expecting but still want to go to university? Why not try clearing? This may be a bit daunting if you are chronically ill, but there are still many ways that you can access support at university after you have started. It doesn't mean that you will miss out on any help because you have asked a little bit later.

Also, a big thing to note: Do not go to university for the sake of it.

If you are unsure what to do, apply next year!


4. College instead of sixth form

So points 2 and 3 mainly focus on A Level results, but what about GCSE? Didn't get the grades that you expected? That is totally fine, chances are there is someone else in the same position as you.
If you were hoping to do A levels but are worrying about the difficulty, why not try college instead?
Although there are some controversy over this, BTECs are a great way to get into university.

5. Resits

Lastly, the most obvious point to make- you can always resit! It is never to late to resit, and there are so many places that take on private candidates, that it is possible for you to study from home at your own pace.


Hopefully this will help anyone going through the stress of results day! If anyone needs any advice on anything else then feel free to contact me.

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Sophie
x

Scope for Change 2018- Residential Weekend

So the day had finally arrived! It was time for me to begin my journey for the Scope for Change 2018 residential training weekend.


I travelled up to Loughborough and spent 3 days there to begin training for my campaign with Scope. After feeling a little unwell on Friday, it was touch and go whether I would actually make it but I am so glad I did!

Day one

I left at roughly 7:30 in the morning, and after a long 4 hour journey we managed to reach the Burleigh Court in Loughborough at 11:30. The hotel we stayed in was amazing, and I later found out that Team GB Paralympians had previously stayed there! It was so accessible and all staff were really friendly.


We started the weekend off with a meet up with everyone, getting to know each other and then had some lunch in the restaurant. Afterwards, we had our first session which was "Planning a Campaign." This was really useful and a great way for us to get started! It focused on our objectives and aims, different tactics and how to target our audience. It was so useful to hear from other disabled campaigners and all our ideas just seemed to bounce off each other.

Later on, we  had a 1-1 with a member of the Scope team to talk about our campaign and what they could do to help. I found this particularly useful as it meant that we weren't on our own through this.


The day ended with a fabulous meal at the restaurant hotel and an early night in bed. Safe to say by around half past 8, I was knackered and in quite a bit of pain. I only wished I could have stayed a little bit longer!

Day Two

So this is where the training really stepped up! We had 4 training sessions which where spread out over the day, including a guest speaker. It included training like "Using Social Media" and how to spread our message across a variety of platforms, and how we can utilise the use of social media to our audience. Another speech, that was particularly useful was the "Making a change with your story and video." This was definitely one of my favourite session as it focused not only on our story as a disability campaigner, but also from the perspective of the interviewer. It meant that we were able to use these skills to be a competent and good interviewer when gathering testimonies for our campaign.

After a little lunch break, we then had two more sessions which included using persuasive techniques and how to influence people. My all time favourite session had to be from the external speaker- Bal Deol. After hearing her story and her journey of campaigning, she is officially my new idol! So Bal had discovered that she was being over charged by taxi firms, for simply being a wheelchair user. This led to her being involved in an investigating with the BBC whereby they were able to provide evidence to prove that she was right!

Over the course of a few years, she was able to propose a new legislation which meant that it is now illegal for taxi drivers to refuse to take wheelchair users which has been passed. Her story was so inspiring to prospective campaigners, and she has achieved so much at just 25 years old.

Towards the end of the day, my pain levels started to increase. I was so exhausted but so excited for all the good things to come. Unfortunately, I had to leave dinner a little bit earlier than I had hoped as I was just in too much pain in my hips and spine. 

Day Three

So this was our final day, and the weekend definitely flew by. Our first session of the day was "People, Power and Parliament" with another guest speaker called Skye Yarlett. She was brilliant and really engaging! This session was particularly useful if your campaign involves changing any legislation, and how to get the most out of your MP.

At this point, it had now been official that I was going to collaborate my campaign with Chloe, a fellow Scope participant who lives just down the road from me. We both have similar ideas in what we want to achieve, and for us to share the work load around our conditions we have decided to join forces. After all, two heads are better than one!

By mid day, it was safe to say I was really starting to struggle. It had been such a long weekend and I was battling all sorts of symptoms, but I'm so glad I managed to be a part of it. After feeling a little bit demotivated, I was beginning to feel that there was so much in the world that needed to be changed, would it ever be possible to achieve full accessibility and equality for disabled people? But after hearing Bal's speech, this was definitely the turning point for me in the training.  I would definitely recommend anyone with a disability to join Scope for Change! I am so grateful to be given the opportunity and I now feel like anything is possible.

It isn't about changing everything in society, it is about making a difference no matter how small.

-Sophie xx

(Photo Credit: Scope Team)

Dating with a disability- Part one

Hi, I'm Rhys, Sophies boyfriend of 8 months. I'm writing this as Sophie asked me to share my experience of dating someone with a chronic illness.



I met Sophie on a dating app in October and she blew me away. We really hit it off and decided to meet up. The first few dates went really well and I looked her up on facebook so that I could add her on there.

This was when I first found out about the illnesses Sophie had. At first, the prospect of this was really scary and became even more so after a bit of time spent googling everything. This all came as a bit of a shock to me, as seeing Sophie you would never be able to tell.

Shortly after, Sophie actually brought this up and was able to explain a bit better. I could tell this was something that was difficult for her, and knew that her telling me all of this could leaving her thinking that she might've scared me away.

But would finding any of this out change anything about the amazing person that I had met?

Since I am here writing this its probably quite obvious that the answer was ‘no'. She is still beautiful, kind, funny and smart. None of that was going to change and why would it?

The time we have spent together has been perfect and I wouldn’t change it for the world. Even though we sometimes have to approach things a different way and take a bit more time doing them. I think this can sometimes be a bit frustrating for Sophie as we can't do things ‘normal' and have to take life a little slower on occasions.

One of the most important thing about our relationship would have to be honesty and being able to talk to each other about anything. I think this has really helped the two of us. I now have a better understanding of some of the limits to what we can do and I think Sophie is more comfortable being able to talk openly about how she is feeling.

Sophie asked if I would add a bit at the end with some tips for dating someone with a chronic illness, but I don't think there is anything special that you shouldn't be doing already for someone you are in a relationship with.

--Rhys 

Disabled and going to university?

So the summer is here! Exams are over! And you may be wondering what to do next. Do you do A Levels? Go to college? Go to university?!

These decisions are completely life-changing and are even more stressful when you have a disability or a chronic illness.

For me personally, I have had a wide range of experience when it comes to education. I have tried EVERYTHING. I have taken a year out, done part-time education, full-time education, self-studying and distance learning. I have had to change my career path and the way I study as a result of my EDS, and I have even left a brick university because of it.

However, that was my experience, and I have spoken to many people who have successfully completed university with their disability and in their own way. My biggest downfall was my complete stubbornness. I hate asking for help and felt that because I wasn't “disabled enough” during my time at university, I therefore, was not entitled to the help. 

So here are some tips on how to survive university with a disability.

1. Inform the university as soon as you can.


The best way to do this is to disclose it on your UCAS application! By doing it this way, the university can get in contact with you about the support you need before you even start your course.

2. Speak to your tutor and let them know of your condition.


Now you may think there isn't much point in doing this, especially if your course has quite a lot of students. For example, my university course had 100+ students. It's better to speak to your tutor so they can put a name to a face, but they can also see that you are trying. If you are completely honest with them, explain how your condition affects you, they are less likely to think that you haven't turned up to a lecture because you are hungover.

3. Apply for DSA if needed


This is a big must! This can help you so much, whether it is just a bit of extra income to having a helper attend lectures with you.
 
4. Speak to your disability officer


Make yourself known to your disability officer, they may be able to provide support for you that you didn't think was possible! 


5. Sort out support in lectures and exams


This is something that your disability officer can help with. You can get access to all sort of support that you should have had in secondary school, such as extra time in exams, a reader or a scribe. You can even get access to equipment to help you with your lectures that can come out of your DSA like recording equipment! Every little bit of support you get can go a long way!

6. Ask for help


Please whatever you do, don't do what I did. I was so stubborn that at times I refused help, which looking back is quite silly. If some offers you help, take it! If you need help, ask for it! You are not being a pain or a nuisance. You are paying a lot of money, giving up your time and energy to get your degree, you deserve the help.

7. Do not give up.


If attending mainstream university is not for you, then there are other ways. How about attending a college instead? Classes tend to be smaller so more likely to get support. Or how about Open University, or other means of distance learning?
University was ultimately the best and worst time of my life. I met so many wonderful people and had the experience of living on my own with complete strangers who turned out to be the most amazing people! That is something that money can’t buy, but it wasn't an easy decision for me to leave either!

The point I'm trying to make is that it doesn't matter if you don't graduate at 21 or if you can't get your degree in the way that society or schools say you should. It doesn't matter when you get there in your life, as long as you don't give up.


Sophie xxx

Scope for Change 2018 Launch Event- London

 (photo credits: Scope Charity Twitter)

As some of you know I have been offered an amazing opportunity to be apart of a campaign programme with the disability charity Scope. As a result of this, I was invited to attend their launch event in London where I have met some fantastic disabled campaigners.

To say I was nervous at the start of the event would be an understatement. For me personally, I felt that I would not "fit in" at event like this, as from the outside I can look completely healthy. I am a complete advocate for invisible disabilities, but my own self acceptance to "becoming disabled" was definitely a long one, and so it was natural to feel like this. I can honestly say that attending this event was an incredible opportunity and one that I will definitely wont forget. From the moment I walked in, I felt comfortable and that I belonged.

The afternoon started with some introductions and icebreakers. It primarily focused on our background, our conditions and what we would like to campaign about, as well as what we want to get from the residential training in Lough borough in August. The hours just flew by, and after a half an hour break, we heard from some guest speakers.

 (photo credits: Scope Charity Twitter)

Firstly, to talk about his experiences was Robin Hindle Fisher, one of the trustees of Scope. What resonated with me most about Robins speech, was his attitude and determination to succeed despite growing up in a time where disability was not accepted to the extent that it is today. And while being able to comment on his childhood and adolescence, admitted that while society has progressed so much since then, we still have a long way to go. 

To quote Robin "Encourage to see society as our friends and not as our enemy, if non disabled people feel uncomfortable see that as something that we can change"

The other guest speaker was a woman called Esther Foreman, who is the CEO of The Social Change Agency, and a professional campaigner. She talked about her experiences of being diagnosed with MS at 15, and the knock on effect that this had on her life and what spurred her on to begin campaigning. Her most recent campaign is the "ScrapPIP20m" which involves people showing how far 20m will get them, to show that people with disabilities still require full support if they can walk a few steps more than 20 metres, something which the UK government disagrees with. Hearing how Esther had coped with her disability and her journey to self acceptance, was definitely something I needed. Especially after feeling like I didn't deserve to be at the event as I didn't class myself as "disabled enough". 

After to speaking to other disabled young people, it made me realise that things will be okay. We can all achieve anything we set our mind on to, whether its a career or just doing something you are passionate about. It was wonderful to hear from so many people who are in a similar position and going forward in achieving equality together, regardless on what our disability is.

Love Sophie.

xxx

Campaign Launch!

Hey everyone👋🏼
I know some of you already know what I’m going to say, as I was too excited to wait to announce it on my blog but....
I have been selected to take part in the “Scope for Change” involving the leading disability charity Scope!
It is a programme whereby 15 disabled applicants were chosen to have training on how to campaign for something you are really passionate about, with the support of Scope!
The campaign I have decided to create is #Education4allUK
It’s primary focus is to ensure that all disabled children have an equal access to education in mainstream schools. I hope for this to start off in my local community of South Wales, and then branch it out to the rest of Wales and the UK. I am truly passionate about accessibility in education, and based on my own experiences as well as speaking to other disabled and chronically ill people, more work definitely needs to be done in this area!
We are one of the richest, and successful countries in the world, there is no excuse for barriers to be in place for a child to access education.
I am so thankful for Scope for giving me this opportunity, and to hopefully create a platform where we can introduce a more equal and diverse community within our mainstream schools. I am incredibly grateful that my employer wants to get involved in helping rolling this throughout our local community.
6 months into BendyBlogs, and so much has changed for the better. I want to thank you all for your support and hopefully this will continue to grow.
Much love,
Sophie xxx