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?
BendyBlogs♿️
Life as a 22 year old living with Ehlers Danlos Syndrome & Postural Orthostatic Tachycardia Syndrome
Saturday 7 December 2019
Why I nearly gave up blogging....
Friday 15 February 2019
Things they don't tell you when you have a chronic illness
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?
Saturday 19 January 2019
10 things this last year has taught me
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
Wednesday 14 November 2018
When your "invisible" disability becomes "visible"
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
Thursday 4 October 2018
Hospital Appointment
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
Wednesday 29 August 2018
Dating With a Disability- Part Two
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.
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
Monday 20 August 2018
My thoughts on "Afflicted"
Sophie
xx
Thursday 16 August 2018
The negative side of results day!
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.
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
Monday 13 August 2018
Scope for Change 2018- Residential 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!
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!
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!
(Photo Credit: Scope Team)
Thursday 5 July 2018
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
Sunday 1 July 2018
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
Friday 22 June 2018
Scope for Change 2018 Launch Event- London
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.
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
Thursday 7 June 2018
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