Cortisone injections – Update.

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In December you’ll of seen I posted about my experience with hip dyslasia and how after years of hospital appointments and pain, I’d just recently had my first course of Cortisone injections on 18th November 2015. After the procedure I had quite a bit of pain/discomfort which the hospital had warned me about but within about a week the constant pain I’d grown so used to had completely gone. I honestly can’t put into words how good that felt, you’re body gets so used to feeling pain that you completely forget what it’s like to wake up pain free.

Three weeks seemed to fly by and I genuinely felt like I’d be given a brand new leg, I thought I’d finally found something that truly worked and as time passed I was overjoyed to finally be able to get back into a regular routine at the gym, I could see friends again I know it probably sounds crazy that it’d stopped me seeing friends but being in daily pain really had started to take it’s toll on every aspect of my life.

So everything was going great until about a week before Christmas when I first began to notice the clicking again when moving my hip, I didn’t think much of it and just assumed it was because of the increase in cold weather but with the more time that passed I noticed the niggling pain start to come back when walking. I was absolutely gutted at the thought of being back in pain as the last few weeks had been so nice and I finally felt like I had some control over my daily activities again.

We’re almost at the end of January and sadly my pain with my left hip has well and truly reared it’s ugly head again, it’s horrible to back to square one again after a lovely few pain free weeks but thankfully I will be seeing my specialist again in February and I’ve got everything crossed that he’ll be able to offer me something that’s more long lasting.

Have any of you guys ever tried Cortisone and did they work for you? If not how did you deal with the pain?

 

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Trying to change perceptions – My fixers project.

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Everybody who knows me will tell you how passionate and determined I am about changing people’s perceptions of disability, that is a huge part of the reason I started this blog, I’ve come across so many people who seem to have such a preconceived idea of what a person with a disability is like or how they live there lives. So with that being said  I’m always trying to think of new ways to challenge how people treat and act around someone with a disability,  in July 2015 I was just looking around online when I stumbled across the Fixers UK website. If you haven’t heard of Fixers they’re an organisation that helps young people age 16 – 25  campaign around an issue they’re passionate about using a number of different ways e.g short film, poster, campaign or an event/workshop. After looking through the website and seeing some of the campaigns other young people had made, I decided to give it a go and sent an email expressing my interest in becoming a Fixer. You can find out more about Fixers and also view my Fixers profile here.

I’ve contacted numerous charities/organisations and heard nothing back so I was pleasantly surprised when I received an email from Fixers saying they would like to arrange an initial meet up with one of their team to discuss my ideas. On August 7th 2015 I had my first initial meeting with a Fixers Co ordinator (Mariam) which was great, I spent about an hour speaking to Mariam about my life with a disability, the times I’ve faced discrimination  and why I wanted to make a change.  It was lovely to speak to someone who truly listened and really wanted to help me make positive changes, I remember going home after that meeting and feeling happier and more determined to make positive changes than ever! Me and Mariam  emailed back and forth about my ideas until my project was assigned to a producer who could help me develop my ideas into a resource.

On 2nd October 2015 the day had finally arrived for me to meet again with Mariam and also a Fixers producer (Abi) to discuss  all my ideas and get the ball rolling on producing a resource. The meeting was amazing yet again I’d never met Abi before so I spent time with her discussing my disability and why making a change was so important, we then chatted about what kind of resource I wanted to make. After reading through and discussing my blog we decided that making my blog post ‘The do’s and don’t of disability’ into a short film would be a great way of getting my point out there and hopefully help non disabled people end any awkwardness they might have around someone with a disability. Anybody who has ever met with me will tell you that I use humour quite a lot in my approach to my disability so I decided that using humour in my film was best suited to my personalty and everybody loves a bit of humour right? Abi wrote down all my ramblings/ideas to take away with her and put together into some sort of script for my film.

After about 2/3 weeks I received the script for the film from Abi and absolutely loved it! It was everything I’d wanted it pointed out some of the experience using humour but while still getting an important message across. I emailed Abi/Mariam telling them how happy I was with the script and we arranged a day for filming. I was beyond excited at everything that was happening, I never would of thought a few years ago that I would ever be happy and confident enough in my own skin to be making a short film.

On 6th November the day had finally arrived for us to film and to say I was excited would be an absolute understatement! We were due to film a few scenes outside around Liverpool city centre but English weather meant that we had to film inside at Liverpool University. I was so nervous about being in front of the camera at first but after a few minutes my nerves went and I just couldn’t wait to film more scenes. I won’t say to much about the scenes as you can see the film for yourself below, filming was everything I’d wished it with be it was such a lovely day filled with laughter, jokes and amazing people!

I hope you all enjoyed the film and if you did can you please share it so we can get it out there! It’s so crazy for me to think back and look at how much things have changed for me, I feel so blessed to have experienced the things that I have within 2015. I want to take this chance to thank every single person who has helped me during this experience, you’ve all helped me so much and this amazing opportunity for me to get my voice heard would not of been possible without any of you! ❤

 

 

Hip dysplasisa & cortisone injections

 

If you guys have read the blog from the start then you probably will of read my post on hip dysplasia – to surgery or not to surgery, in this post I explained that I’d suffered from hip pain since I was about 15 and that when I was younger they had once offered me hip replacement surgery  but this was something I’d turned down at the time because as a scared 15 year old I felt this was a huge decision to make and I didn’t feel I knew enough about it. After I’d turned down the surgery they didn’t offer me anything else and I was left for years to just deal with it and try to manage my pain.

So I sort of give up on doctors but anyone who knows me will tell you that over the years I’ve googled hip dysplasia more times than I can count and tried every possible ‘at home’ remedy I could think of from heat packs, ice cubes, herbal remedies and even losing dramatic amounts of weight but nothing worked.

My pain just seemed to be getting worse the older I got and it was effecting my daily life more than ever as I was in constant pain, I decided earlier this year after a fall that enough was enough and I needed to get some help for my hip before it got any worse. So in June I went for my first appointment as an adult patient with a hip and knee surgeon, I’d waited almost 5 months for this appointment so I was actually really excited/nervous to see what help or options he would be able to offer me. I didn’t hold out much hope though as in the past I haven’t had very much luck in regards to doctors/specialists but to my surprise my specialist had said that surgery wasn’t something they would be willing do right now as it wouldn’t be just a hip replacement, they would have to rebuild my pelvis and then do a hip replacement apparently this is a really big operation which means the longer I can manage without it the better.

After many xrays/scans and examinations they found that as well as my hip dysplasia I now have secondary arthritis which they think is the main cause of my hip pain, although they didn’t think surgery was my best option right now they did come up with another option of giving me cortisone injections. Cortisone injections were something that I’d heard nothing about until ironically I met a lovely lady while sitting in the waiting room, it was one of them you know where you’re sitting there and a wonderful stranger starts telling you there story? I’d been sitting waiting to be called when this lady just randomly started telling me that she comes to the clinic every 6 – 12 months for Cortisone for arthritis in her hands. She told me she’d had them a few times and found them amazing so as you can imagine when they offered them to me I was over the moon, that was until I remembered how she’d described her clinic visits as ‘the scariest of my life’ she then went on to say that the needle was huge and some of the worst pain she’d ever felt.

Despite the stories of  terrible pain the lovely lady told me I decided the benefits seemed to outweigh the negatives so I decided to give the injections a go. On 18th November the day finally came for my first course of Cortisone and I can definitely say I’ve never felt more excited to go to an appointment even though I was really nervous as I’m really not too good with needles but thankfully my nerves were soon put to rest once the hospital staff ran through everything that would happen and assured me the needle wasn’t huge! As the doctors assured me the needle wasn’t huge and it wasn’t the worst pain I’ve ever felt like certain people had told me it would be obviously it was uncomfortable like you can imagine with any needle but it was over within 25 minutes, they told me that once home I’d probably be in pain for a couple of days as the steroid in the injections can cause slight irritation at first but after that I’d be fine to get back to normal.

Cortisone injections don’t work for everyone so for a couple of weeks after I was really apprehensive and nervous as to weather they would work for me but just over a month after my injections I’m so pleased to be able to say it has worked wonders for me and my pain has dramatically decreased, the effects of cortisone can last for up to 7 months so hopefully they’ll last that long for me and I’ll be pain free for many more months to come!

Have any of you guys had Cortisone? If so How did it work for you? please let me know in the comments below guys.

Loneliness & disability

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I stumbled across an article earlier this week that really shocked & saddened me, it was an article on BBC ouch that was titled ‘Why are a quarter of disabled people  are lonely’ this report was made up of survey results from disabled people 23% said that they feel lonely and isolated on a daily basis so why is this and why isn’t more being done to change it?

Reading articles like this one really get to me as it makes me realise that the way I felt growing up was perfectly normal sadly,  loneliness is one of the hardest feelings I think there is to deal with and while it is something that everybody deals with. I do think  a lot of research is put into helping older people who may struggle from loneliness due to no longer working or loosing friends due to age but not much seems to be put in place for young disabled people who can’t socialise, I do think it can be harder if you have some sort of disability or something that may make you feel different to your peers, as it may be harder for you to gain friends in the first place. I know for me it was struggling to do what other children found easy that made it harder for me to socialise comfortably because I always felt somewhat less than my peers. Even at the age of 25 I still struggle to socialise in certain situations due to poor access into certain places or just basically my awful shyness and I genuinely think that more needs to be done to help young disabled people to overcome these barriers and make lasting friendships.

This article highlights a number of reasons why people with disabilities find it really hard to make and maintain friendships e.g poor access, lack of money or low self esteem which are all perfectly understandable reasons to me as someone who has a disability myself but one of the most shocking facts this article brought to light was that a huge 67% of the British public admit to avoiding communicating with disabled people as they feel uncomfortable or just don’t know what to say which makes this another huge factor as too why people with disabilities struggle to make lasting friendships with their none disabled peers. I strongly believe that everybody should have at least one friend in life regardless of their abilities so more needs to be done to help people get out there and make connections, so my dream is to set up some sort of workshops to help people out with their social skills and hopefully give them a safe environment for them to make forever friendships.

So what are your guys thoughts on loneliness disabled or not, is it something you have struggled with or still do? If so what do you find helpful?

Happy National Cerebral Palsy Awareness Day!

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Today 25th March 2015 marks National Cerebral Palsy Awareness day, so I couldn’t let it pass by without writing a post so I thought I’d do a post about all things positive when it comes to Cerebral Palsy. I thought I’d write a list of 5 celebrities with Cerebral Palsy who inspire me because they have never let their disability hold them back when it comes to pursing their  dreams.

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Francesca Martinez –  Francesca Martinez is best known for being a stand up comedian & actress but she is also a campaigner. Francesca’s attitude towards disability and her Cerebral Palsy is refreshing and is something that inspires me and many others to never let CP get us down.

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Christy Brown – Christy Brown is someone I’ve only recently heard of but wow what an amazing example of not letting anything stand in your way, Christy was born with severe Cerebral Palsy and his parents were sadly to when he was born that he would have no sort of life as he only had control over just one limb which was his left foot. Despite doctors predictions Christy went on to have an amazing career in both art and poetry and sold his amazing paintings done with just his foot all over the world.

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Anne McDonald –  Anne McDonald was an author and an advocate for people with communication difficulties sadly Anne had a difficult start in life which saw her be neglected and starved at the hands of her carers. Despite her difficult start in life and her serve Cerebral Palsy Anne never let that hold her back, Anne’s book called ‘Annie’s coming out’ all about Annie’s life won numerous awards and went on to be made into an award winning film. As well as this Anne was also an amazing advocate who did so much to help raise awareness for people with Cerebral Palsy and communication difficulties.

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Abby Curran –  Abby is an american beauty pageant contestant who was the first person with a disability to compete in Miss USA, she now appears on American TV regularly and has now set up her own pageants for young girls with disabilities called ‘The Miss You Can Do It’ pageant.

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Dan Keplinger –  Dan is best known for his art and his Oscar award winning short film King Gimp, He is an incredibly talented artist and also a great example of how cerebral palsy doesn’t have to stop you living and pursuing your dreams. Dan is now a motivational speaker and talks all around the world inspiring people and motivating them to find and pursue their passions in life.

This list is just a small example of 5 incredible people who are proud of their Cerebral Palsy and have never let it hold them back or define them, I know so many incredible people who aren’t famous who motivate and inspire me everyday! Who inspires or motivates you guys?

Since starting this blog I’ve had so many amazing comments and emails of people saying they love my passion and positivity when it comes to my disability and it’s such a lovely feeling because only a few years ago I really struggled to accept and love my disability, so I wanted to use today to let anyone out there who might be struggling with accepting their CP know that it will happen eventually over time you will come too realise that your Cerebral Palsy is just a tiny part of who you are and you can achieve incredible things! One question I get asked a lot is ‘Would you take a cure for you Cerebral Palsy?’ & the answer always is  NO without a doubt, I’m not saying that my CP doesn’t annoy me at times but I consider myself to be blessed and I’m proud of who I am Cerebral Palsy and all! I think we should use everyday but especially days like National Cerebral Palsy Awareness Day to unite and show the world that we’re proud of our Cerebral Palsy and that it won’t stop us making our mark on the world!

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So I just want to finish this post by saying Happy National Cerebral Palsy Day too all my fellow CP’ers I hope you all have an amazing day and keep showing the world how incredible you are and let them know that having Cerebral Palsy is not a big issue, we will never let it dull our sparkle! ❤

The Do’s & Don’t’s Of Disability!

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As a lot of you will know I’m looking to set up my own disability awareness training business so over the last few months I’ve been attending some business training courses. Being on these courses has brought up a number of questions about what I do and don’t find acceptable when it comes to my disability, this has got me to thinking how awkward or uncomfortable certain people feel when it comes to disability because they don’t know how to act for the best. Every disability and every person with a disability is different so I’m not saying that my list of do’s and don’t’s will fit everybody but they are definitely important too me.

The Do’s!

  • Do ask questions – I know certain people don’t feel comfortable answering questions about their disability but for me I’d much rather some one ask about my disability than just sit there wondering.
  • Do speak directly to me – I’ve been out on numerous occasions either just in the street or at appointments and someone will look right at me but then speak directly to my parents like I’m not even in the room, I have a disability that doesn’t mean you can’t talk to me.
  • Do act normal –  I am a human being just like anyone else, I don’t need any kind of special treatment just treat me like you would any other person.
  • Do see any mobility aids as part of my personal space – Weather it be walking sticks or a wheelchair, it is part of the person so don’t lean all over it or move it without asking the person. I wouldn’t come a pick you up and carry you off so please don’t push my wheelchair without asking me.
  • Do think before you speak – I’ve always been told to think before I speak and this is a saying some people have never heard because I’ve been asked and heard so many ridiculous things when it comes to my disability and if people just took a second to think before they speak then this awkwardness wouldn’t happen.

The Don’t’s!

  • Don’t make assumptions – One of my biggest bugs is when someone knows one disabled person or one person with Cerebral Palsy so they just assume they know me and how I am.
  • Don’t patronize me – I’ve had so many people who see my disability then for some reason think they need to speak to me like I’m a child, I’m 25 years old my disability does not effect that.
  • Don’t help me without asking – This may sound a bit harsh as I know people will think they’re being kind by helping and I’m grateful that people want to help me but I can’t stand it when someone comes over and just takes over or starts doing something for me without asking do I need their help.
  • Don’t tap or touch me –  This one actually makes me laugh and I genuinely don’t understand it, would you go up to a stranger and tap their head? No so why is acceptable if the person is disabled? Let’s be honest it’s not it’s just disrespectful!
  • Don’t single me out of conversations – I remember being in college and being sat with a group of girls who decided to leave me out of a conversations about boyfriends because they assumed I didn’t have a boyfriend because I was disabled, which of course isn’t true! If I don’t won’t to be involved in a conversation I am more than capable of letting you know.

So I hope that this short list helps anyone out there who may be struggling when it comes to interacting with people with a disability and please remember the most important thing is that we’re just like anybody other person! Interacting with someone with a disability shouldn’t be a big deal!

Blogger help? :)

Hey all my lovely fellow bloggers this is just a quick post to ask for some help, some of you will know that I’ve been wanting to set up my own business for some time now and earlier this week I had a meeting with a business advisor.

The meeting went well and I feel like I’ve made a huge step forward in terms of setting up seemenotcp but now I need to do all the boring stuff like business plans and market research which is where I’d like your help, Seemenotcp would go into schools, colleges, universities, organisations and speak to new parents of children with Cerebral Palsy and help answer any questions, give talks, raise awareness and also offer disability awareness training. Before setting any of this up though I need to see if their is a costumer base and a need for my services so if you feel you or anyone you know would benefit from this type of service could you please take the time to fill out this short survey?

You can find the survey here https://www.surveymonkey.com/s/PZ6K82P  it will take less than 10 minutes to fill out but will really help me out, Thank you for your time and any help you can offer me guys! 🙂

More support is needed!

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Growing up I didn’t really get much help from authorities in terms of things I needed around the house e.g stair lift or walk in shower, so I’d always said that when I got older I would help others in the same situation to fight for the things they needed but why should we have to fight for it? Surely we should be offered help!

I’m not in any way saying that all organisations or charities are unhelpful because i’ve had some great help over the years. It’s not like I expect to just get things handed to me either because I certainly don’t but since starting this blog and really beginning to look into starting a business, have I realised that even though things have improved since I was younger there is still a huge gap when it comes to help for people with CP/disabilities. I’ve done a lot of research into businesses similar to what I want to start and was shocked that there is hardly any out there and especially in Liverpool.

Since leaving college four years ago I’ve searched high and low to get the help/support I needed  to get out there and be making a contribution to society because contrary to popular belief by certain people, disabled people are not lazy scroungers! I’ve always found it incredibly funny that there are certain organisations or people that are so quick to jump on as disabled people if we aren’t actively out there doing something but seem to go into hiding once we do actually need some help.

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I know  not only from personal experiences but also from friends experiences that even when there are organisations out there who claim to want to help that they aren’t always as helpful as they may seem, I’ve lost count of the amount of never ending waiting lists I’ve been on, the amount of phone calls that never happeneded or the amount of let downs I’ve experienced, not only in terms of my disability but also from mental health services. That’s what really angers me though when the media and certain other people go on about laziness or how people should try harder but how can we as disabled get out there and make our mark if the help we need isn’t out there? Or the people who claim to want to help us let us down so badly!

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The amount of times you hear tragic news or people taking thier own lives because the system failed them is why I whole heartedly believe there should be so much more support out there for people who are struggling or just need some extra support to reach thier full potential. So it’s my absolute dream to run my own business supporting others in similar situations to mine, nobody ever deserves to be let down and so should be offered every bit of support they need to live the full and happy life they deserve!

How exercise has improved my cp 💪

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In previous posts I’ve discussed my weight loss over the last two years which has made me so incredibly happy but it’s also improved my Cerebral Palsy in ways I could’ve never imagined!

Before starting the gym my mobility had hit an all time low, I was constantly falling over, had daily aches and pains and things I’d once found easy had become a huge struggle.  As you can imagine being 4 ft 11 and almost 12 stone is going to affect anybody’s mobility so add CP into the mix and your not doing well!

I was a complete beginner when it came to the gym and I had no idea where to start when it came to exercises, I thought I would be able to get some help online but after hours of searching I found that nearly all the exercises or advice I could find for people with disabilities were poor to say the least.

My first few months at the gym I took things easy and only used machines that I knew wouldn’t effect my legs as I was scared of injuring myself and loosing what independence I had, after about 6 months into my gym session I started to notice my weight loss but couldn’t see much difference to my mobility problems. Once I got more comfortable at the gym I began to figure out what I could use and that’s when my complete love for the gym truly started.

I started to see a real difference to my Cerebral Palsy when I’d been at the gym about a year and a half, I had so much strength in my legs and for the first time in my life I felt strong enough to walk without linking someone while out and about which at the age of 24 is amazing (no one wants to be holding a parents hand at my age). As well as my body strength and stability improving I also found that the more I worked out the more my stamina improved which meant that I could finally complete a lifelong goal, which you will know from my previous was completing race for life 😀

I know that it is a cliche but exercising definitely has changed my life and improved my health and wellbeing in so many ways, before I started working out I was convinced that exercise wouldn’t do me much good but I was so wrong and would recommend exercising to anyone regardless of their disability. I know that not everyone can access every piece of equipment but no matter what you can do, any form of movement will really help.

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I’m pleased too say it went well! 🙌

I thought after my recent post ‘A mixture of nerves, excitement & anticipation’ and all the lovely comments I got regarding my first public speech, it’s only fair I write a follow up post to let you all know how it went.

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I’m so pleased to be able to say it went so well!, in fact it went far better than I imagined! When I arrived at Daisy the hall was a lot fuller than I had anticipated, which only increased my nerves but after speaking to some old school friends who attend the club on a regular basis and the lovely Dave KellyKelly, my nerves began to subsaide.

Although hearing claps and cheers as Dave introduced me was such a lovely experience as soon as Dave handed me the mic I began to feel a huge lump enter my throat and my voice began to shake but I knew that everything I wanted to say was genuine and heartfelt so I just dived right in and started speaking.

By the end of my speech, which was only about 10 minutes long, all of my anxiety seemed to  have just floated away and my whole body just filled with happiness and pride! I know to a lot of people doing a small talk in front of maybe 15 – 20 people may not seem like much but for the women who used to giggle uncontrollably every time I was asked to speak in public, its a massive deal and if I’m truly honest I couldn’t feel prouder of myself! I feel I can now say I’m well and truly on my way too my dream of becoming a motivational speaker! 😁

So I just want to finish this post off by saying a great big THANK YOU too you all for such overwhelming and incredible support, I’m blessed to have such lovely followers!! 😘