Hip dysplasia – Big Decisions!

As I’ve mentioned in previous posts I’ve struggled with pain and hip dysplasia since I was about 14/15 with little to no relief from painkillers, it wasn’t until early last year after a fall that I decided enough was enough. I went to my doctors who sent me for an x -ray as they were concerned that I’d do myself more of an injury due to the fall, thankfully I hadn’t done any further damage but they did find that my hip dysplasia had gotten worse as the bone had worn down more over the years.

After my initial x ray I was given an appointment to see a hip specialist which I was very nervous/apprehensive about, from this appointment I was then offered Cortisone steroid injections which you’ll know from previous posts worked absolute wonders for about 4/6 weeks. I was absolutely gutted that the injections hadn’t worked for a longer period and I was now back to square one but I was hopeful that at my next appointment they may be able to offer me something more long lasting.

Today 3rd February was the day of my follow up appointment and all that comes to mind is wow!! firstly I’ll start by explaining that just over 4 months ago when I last saw my specialist, I was told that surgery wouldn’t be an option they were even prepared to discuss for many years too come due to how much would be needed to rebuild my pelvis/hip. As much as I hate being in pain it was a relief to be told that surgery was such a long way off because as with many people I hate hospitals and even the thought of another surgery brings me out in major panic. So if I’m honest today’s appointment wasn’t something I’d been too worried over as I’d sort of convinced myself I’d just be offered some other forms of pain relief.

I couldn’t of been more wrong about the outcome of today, after waiting to be seen I was told by a nurse that my specialist wanted to know did I want a hip replacement, I was just like ‘wow what?’ It was such shock after not expecting surgery to suddenly be told that surgery was now my only option. If being told that having surgery was my only option wasn’t bad enough it then got worse when they proceeded to tell me that unlike most hip replacements due to my disability and the condition that my hip/pelvis is in that it’ll be a much more complex operation than usual, with a seemingly never ending list of possible complications.

Looking back now the whole appointment seems like a blur and I’ve got 101 worries running through my head and about a million more questions than I even got chance to ask during my short time with the specialist. They’ve given me an eight week period to think about it and then get my name on the waiting list but from what I’ve read in the booklets they gave me, I don’t think I’ll be getting the operation due to the high risks of certain things that could go wrong. I feel so frustrated and sad that after all these years it’s boiled down to either risk things being worse or spend my life learning to live with the pain.

Have any of you guys ever had a hip replacement or been offered one? If not how do you manage your pain? Any suggestions or advice would be amazing!

 

 

 

 

Life lessons for my younger self!

Firstly guys I just want to say that I’m so sorry that I haven’t been around much lately but like I’ve said on various social media, I’ve had major writers block and  that teamed with a lot of things going on has meant I haven’t been in the right frame of mind to blog.

Recently I’ve been over thinking a lot so I thought what better time to do a post about things I wish I could tell my younger self, obviously I would be here all day if I wrote down everything I wish I could say so I thought I’d keep it short and just do the 5 that I think are the most important.

Don’t be gullible – Not everyone out there is as genuine as they may seem and soon you will start to realise that certain people will tell you anything they have to, if it means that they will get what they want. I’m not saying they there aren’t genuine and honest people out there but please just remember to not believe and trust everything you are told.

Be proud of who you are – I know like every young girl you have dreams of being a perfect supermodel with a size 6 waist and looks to die for but I can guarantee too you that nobody is as perfect as they may seem and you are imperfections are what make you unique and special. Don’t waste the next few years of your life wanting to be someone else you are beautiful..be proud of yourself!

Don’t dwell on the past –  Certain things will happen during your life that you will wish you could change or do differently but one thing I’ve learnt is that yesterday is gone and tomorrow isn’t promised, No matter what you can’t change your past and by living in the past you are doing nothing but robbing yourself of future happiness. By the time you get too the age I am now you will realise that all the trivial idiots from the past and the things that happened have no significance on your future.

Bad times won’t last forever –  I know during these crappy times you will feel like nothing will ever get better for you but I’m so happy to be able to promise you that they definitely will, there will become a time in your life when you will be so glad you stuck with it and overcome the bad days because great things lay ahead.

Don’t chase people – This one is something I know you would laugh at me for because I know that you don’t believe you do this but please don’t ever feel the need to chase people to keep them in your life, If you mean as much to these people as they say you do then they won’t need chasing because they will be right there by your side wanting to be apart of your life.

So if you had the chance to go back in time and talk too your younger self what would you say guys?

Motivational Monday – Don’t be afraid of being alone!

I’m a firm believer that everything that happens in life, happens for a reason and recently never has that saying become truer, so much has happened that has mean’t I’ve realised that not everybody is genuine and certain people are so judgemental but I’m not afraid to admit that when I was younger I was so afraid of being lonely that I became a follower, crowd pleaser, someone who was determined to fit in and make people like me. I’ve been judged and let down like most people but like I said everything happens for a reason and all these judgements/let downs have taught me that I don’t need anybody else to be happy There would of been a time in my life that if people were hurtful or no longer interested in being part of my then I’d try to change myself to keep them by my side but I’m so happy to finally be able to say that over the years I’m learning that I’m a good, genuine person and if people can’t see that then it’s not my loss but theirs!

I’m not saying that I don’t love my friends and family because I do more than life itself but I’ve definitely realised now that you shouldn’t feel the need to change for anybody, I’m comfortable enough now in my own skin to able to say that I would rather be alone but happy and content with myself than to be surrounded by a huge group of people but be unhappy and untrue to myself. So I just wanted to write this post for anyone out there who may be surrounding with themselves with the wrong type of people just in the pursuit of not being lonely, too let you all know that once you spend time being alone and learning to love who you truly are then the right people will be queuing up to be a part of your life!

The Do’s & Don’t’s Of Disability!

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!

Don’t let people rob your happiness!

first of all sorry I haven’t blogged for a while guys I’ve had a really busy week or so but I hope you all had a fabulous Christmas and now I’m back to give you guys some Monday motivation! 🙂

Over the years a  whole range of people enter our lives some just briefly and others become a huge part of the people we are, some teach us things we could’ve never imagined while filling us with joy and happiness. While others will bring nothing of great importance and there negativity may start to hinder our own happiness.

Anyone who knows me will tell you that I find it incredibly hard to see the bad in people and like to try and help people be happy, in any way that I can regardless of weather that effects my happiness. Recently though it has become apparent to me that not everybody in my life is as pleased to see me happy as they should be and that the more time I spend around these people the more my happiness just drains from me. So I just wanted to write this post today to say that you shouldn’t have to sacrifice your happiness in life, So if the people around you don’t accept and encourage your happy, positive life but instead try to rob you of it then you should ignore these people and start living a life you love!

One of the most important things you can be in life is happy so from today guys please do whatever it is  that makes you happy regardless of what others think, you only get one life and you deserve the best one possible! Always remember that if people don’t bring happiness to your life then they don’t deserve you because you truly deserve happiness!

More support is needed!

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.

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!

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!

Cerebral Palsy & therapy.

Although Cerebral Palsy is a lifelong condition that can’t be cured, there all a whole range of therapies that can help ease or help the effects of CP. In this post i’ll be explaining each therapy and my thoughts on how they help.

Physiotherapy – This type of therapy focuses on a persons everyday movements such as sitting, standing & moving. A Physio therapist will help a childs movement by using a variety of streches and body exercises.

Occupational therapy – Occupational therapy is to help you out during your everyday life by using specialised equipment including standing frame, special seating, stair lift, walk in shower or any otger equipment which may make your everyday life easier.

Hydrotherapy – Hydrotherapy is a water based therapy that is carried out in a pool but unlike swimming the water is normally alot warmer than a regular pool. During a hydrotherapy session you will preform a number of different exercises usually instructored by a physiotherapist. This type of therapy is normally used to relieve muscle and joint pain.

Speech therapy –  This form of therapy will help improve communication skills by helping you to prounce words more clearly, learn new words, put words into sentences or using alternative ways of communication e.g commumication boards, flash cards or electronic communication aids.

Aswell as these common forms of therapy while searching online, I found a list of therapies I had never heard of but apparently these other therapies have some positive effects when it comes to helping people with Cerebral Palsy.

Music therapy – Music therapy can take on a few different forms depending on the persons needs, it could include anything from learning to play an instrument, writing a song or singing. Music therapy will can help improve a number of skills e.g communication, physical or social skills.

Play therapy – The clue is in the name, this type of therapy uses play for young children with CP to help increase confidence and remove any social barriers they might face.

Social therapy – Some people with Cerebral Palsy struggle with building and maintaining relationships which will obviously leave them feeling lonely or isolated, so social therapy is normally preform in small groups to help people build and maintain happy and healthy relationships in a variety of settings.

The list above is just a small list of the possible therapies avalible for children or adults to help improve the effects of thier Cerebral Palsy. Although I would really like the chance to give all these therapies a try, I have only ever used physiotherapy, hydrotherapy and occupational therapy.

As a young child I didn’t particually like any of these therapies, as I hated being taking out of class during school times and I also didn’t like physiotherapy as it caused me pain at times. Looking back now I realise how important having therapy was for my mobility and how much it has helped me. So i’m very sorry to any physiotherapist I shouted or moaned at during my school days 😉

So how do you guys feel about therapy?..what ones have you tried? And what ones do you find helpful? Let me know, I love hearing your thoughts!

A mixture of nerves, excitement & anticipation!

If you’ve been reading my blog recently you’ll know that since I started this blog, I’ve decided I want to start my own business that will go into schools, colleges, universities and local organisations to talk about CP and how I haven’t let it stop me from living a full and happy life, So two weeks ago I took the first step by contacting a local organisation. Daisy uk have been amazing so far and have really helped me get my ideas together and focus! I went for another meeting on Monday which was pretty nerve wracking because it was the first time ive ever written my ideas down and had someone else look at them, it went so well that they’ve asked me to attend a local activities club next Monday to give a talk.

Although this is something ive always wanted to do, to say i’m nervous is the biggest understatement! My mind is spinning with questions ‘what do I say?’ ‘What if no one listens?’ ‘What if they think im boring?. When i’m thinking rationally I know how much of a good opportunity this is for me and how much it will help in my future career, which is why i’m so excited! Im just really starting to worry that I’ve bit off more than I can chew if that makes sense?

The future is something that at one point in my life, I wasn’t looking forward to and just the thought of work or mixing with people in everyday situations just filled me with dread! In the last month though my whole outlook on my future has took a complete 360 and I’m so happy too see whats ahead, my brain is just going into over drive and hooefully my first ever talk will go well.

So guys how do you keep your nerves in check? Any tips/advice will be greatly appreciated! 🙂