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Im now on Instagram as Findingmyrange or click here!!! Follow me for latest blog updates and also random Bits and Bobs!!! Join me on my Journey and hopefully I can join you on yours   🙂 peace and love xxx 



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My Experience of Sexual Assault in hospital & how to report it! 

I know this is not one of my normal blog posts but I feel like I need to share this!! This is a really long post so I suggest making some tea before you start 🙂



For people with chronic conditions, hospital can be like a second home! You get nervous the first few times but you have gone through soo much that at the end you just get on with it and it’s not a scary place anymore but a place where you know you need to be! 

I used to be very shy going to hospital but after being in and out of there for 10 years it’s not somthing that bothers me at all! I’m very comfortable with all my consultants and I have never felt scared or weirded out by any doctors, UNTIL 2013…. 

I had a laproscopy in April 2013 to check for endometriosis. After the operation I kept getting these crazy coughing fits everytime I tried to talk or laugh! I am asthmatic and my blue inhaler would not help me! I would cough till I was choking and somone would have to physically slap my back so I could breath again! This carried on for a few months so I was referred to the asthma clinic in a very famous NHS hospital in Paddington West London … I have been there a number of times when I was younger.. I have suffered from asthma since I was seven and I have had so many asthma attacks and chest infections in my life including pneumonia! So I’m very used to seeing doctors about my chest and know all the tests they do to check you! 



Anway so I finally arrive at this chest clinic appointment! My dad has accompanied me.. I first saw this really nice male nurse, he took me through all the lung function tests so we could show my doctor my results at the beginning of the appointment.. After the tests I went back into the waiting room and my name was called out by a male doctor Prob mid 50s..  I told my dad to wait there as I knew it was a chest appointment and it would have been awkward having dad in the room with me 😕 



The doctor seemed very friendly he opened the door for me and told me to take a seat! As I walked passed him he touched my shoulder! For a quick second I thought it was weird as Iv never met him before but I didn’t think too much about it as I’v had consaltants in the past hug me and I just take It as they care (which they do). I sat down and he brought his chair close to me so he was directly infront of me! we started talking about my problem but he seemed weird! The way he looked at me was just strange and he was saying things like you can’t have eds as you are short and not slim but then compliment me after.  Anyway he didn’t spend long with me and told me to go get a chest X-ray and come back! I left the room and went with dad to get the X-ray.. I kept telling my dad this doctor is weird somthing is not right!

So I got my X-ray and came back to see the doctor… As I sat in his room again he told me he needs to check my chest ! Normally they can check it from the chair but because I was having so many problems he said it’s better to do it on the bed! I was told to undress but keep my underwear on ( I didn’t ask for an chaperone nor was I offered one as he was not going to check under my bra and knickers) . It was really hot that day and I was wearing a vest dress and a light cardigan. I didn’t fully undress because I knew he was just checking my chest so I dropped my dress to my belly so it covered everything below my belly button… He then did the normal tests.. He listend to my chest and then he checked my back with a stethoscope then told me to lie on my back! So I lay down and he started doing the normal tests on the front of my chest then looked at me funny! He then let go of the stethoscope and started doing some tapping thing they do on my chest! Then all of a sudden his one hand went under my bra and he started squeezing my left boob and rubbing my nipple for around 30 seconds while smiling at me! I just FROZE!!! I honestly didn’t know what was happening I just felt shocked, sick and wrong all at the same time! My mind and heart were screaming but my body just froze!  I then managed to move my body and he stoped and Walked back to his desk saying to get changed again… 



I got dressed and went back to the seat. I didn’t say anything! my mind had emptied and I was feeling soo shocked 

He wrote me a prescription then I left.. I couldn’t say anything to my dad as I was feeling soo strange and embarrassed ! I did text two friends on the way home explaining what had happened and both replied saying that’s wrong! No doctor has ever checked my breast like that and I can’t think of any exam that requires you to do what he did! I have had breast checkups before and they would never go under your bra like that! they will ask you to take it off and normally sit up or put your arms over your head! I am 100% comfortable with doctors ESP if they are examining me but this was the first time in 24 years I had ever felt like this! I decided to go straight to my mums house! I told my mum and sisters about it as soon as i got home and they said to call the police but I was soo trumatised that I just tried to sleep.

The next day I went back to my flat! I live in supported housing so I have carers living in the flat who look after me! I told the staff and they straight away told me I need to report it! They said we have to contact the police but that scared me soo much as I didn’t know how I was feeling, I was just shocked! we decided to contact the hospital first! We contacted the hospitals patient advice and liaison service (PALS) for information on reporting sexual abuse! They weren’t very helpful and ended up not even documenting my first complaint properly! They also told us we need to report it in the General Medical Council (GMC). We had to go online and fill out a form reporting the incident. Then we were told to contact an advocacy agency called Voice Ability who help disabled young people with issues like this! We rang them up and explained what had happened they then said we had to report it to the police ASAP! We waited for the police and when he arrived he took my statement! He then warned me that if I continued with reporting it through the police it would be a long process    (He wasn’t encouraging at all and it felt like he didn’t really support me) then he said since i have reported it to the GMC I should wait for their outcome then contact the police again! He also asked the staff if ‘I make stuff up‘ because I am disabled!! The staff got angry as I only have physical disability but even if I had a learning disability should the police be talking about a victim like that? I wasn’t there when he said that the staff told me after he left!  

Anyway allot happened after reporting the doctor and because I am under social services we had to have a few meetings between the PALS representative and Us ( social services and I) the PALS lady first read us a statement that the GMC had no cause for concern regarding the doctor and spoke about his ‘clean record’ they also read a statement from the doctor saying He never touched my breast in the examination! That statement alone   reconfirmed it in my head that he sexually Asssulted  me and there was never going to be an medical explanation into why a doctor would touch me like that! I then told the lady he is definitely guilty  because he’s saying he never touched my breast! She then got soo defensive of the doctor(she’s ment to be a nutural representive) I then asked her what medical exam involves a doctor using one hand to grope a patient breast under her bra while she is lying down and she said she will look into it! A few weeks later we had the meeting again this time the doctor had changed his statement and now states that he did touch my breast area and it was because he was checking my heart beat and I did not feel the stethoscope because it’s was a special one that’s not cold and it was a hot day!!  I was soo angry like is this man actually suggesting that that I didn’t feel let alone see his invisible stethoscope!!! He had stopped using his stethoscope and just had his hand! And to make this worse the representive from the hospital tried to make excuses for him! The meeting ended and I asked for a copy of the statement she read today and the previous statements for what the doctor said he never touched my breasts and her recponce  was this is the same statement as the first one!!!! We argued saying it was different but she refused to change her mind! Then left and that was the end of the meetings…. 



A month later the GMC finally get intouch with me to start investigating my case! The first thing I asked them was ‘didn’t you tell the hospital that you have no cause for concern regarding this case? they said they have never looked into the case as il they haven’t taken my statement so how can they make a decision. So basically the hospital covered up for the doctor 

Nearly 2 years on and the GMC have still not finished investigating because of major setbacks like my hospital file going missing for a few months, then my gp asking me not to complain because the doctor is her friend, to my NHS details getting deleted of the system now my police file has gone missing to so they can’t complete the investigation!!!! Am I crazy or is this a blatant COVERUP??! 

I never wanted to sue as I love the NHS I wouldn’t be here with out it but I think I have to sue the doctor personally! You don’t get anywhere through a normal complains procedure! We have all see the crazy/disgusting abuse scandals in the news recently and after my experience I can see why it took soo long to get the bad guys! 



The complaints system is a joke! The way they treat young women who complain about sexual abuse is a joke and the attitude of people who are ment to encourage you to report stuff like this is a joke! This is why soo many people do not report abuse in hospital because they don’t know how! Or if you do proceed with your complain you are only greeted by a system that does not work or takes a very long time to actually deal with! It’s even harder going through somthing like this when you have chronic conditions because it becomes so tiering! I was lucky to get allot of help with this as I was under the age of 25 so social services were good but now I have no one to help as I’m in adults social team. I don’t really have much of a support system around me anymore and people don’t seem to care because they see it as just a ‘grope’! But it’s not right at all! He could have done worse to other women and to women who don’t know how to speak up about it! So it’s my responsibility to make sure it’s reported and people know!  

I have never regretted complaining and I will never give up on this case! if we don’t standup for ourselves then cases like these will still go unnoticed! It is very hard to deal with this and very frustrating!

I hope the GMC will finally finish investigating this case and the truth comes out. I still have some faith in this system. In the mean time this post is out here for anyone els who has gone through somthing similar! If anyone has any advice for me please contact me! 



So remember 

  • Always have a Chaperone in the room during body exams 
  • Take someone with you if your not comfortable 
  • Report any incident that happens straight to the PALs service in your hospital 
  • Also report it to the GMC through their website or click here 
  • Always have a pen and paper and write down the time you spoke to anyone regarding the case and their name 
  • Contact a advocacy worker! PALs should help you find one 
  • Ring the police and make an official statement (try and do it witching 48 hours of incident happening)
  • Tell people close to you as you will need their support 
  • Try and use email as much as possible to keep in contact with people involved with the case as this is evidence 
  • Set up a folder to keep all information on there 
  • And Trust you Instincts!! If you feel like you have been abused in hospital or are not happy then there is somthing that’s not right!get advice and get an answer! 

If your still reading this Thank You! 

Peace and Love xxx

http://thezippyzebra.com/?p=974


Good News ‘driving’

I finally got a letter from my Autonomic  Dr giving me the all clear to drive!!!! I was told previously by DVLA that I would have to go ONE YEAR without fainting to get my licence!! So I gave up then because that would never happen even if I didn’t have POTs! But my doctor said because it does not happen while sitting Im ‘safe’ for the road!! Now I have another huge bump in the road (excuse the pun lol) I am partially sighted and currently don’t pass the vision requirements! But I am seeing a doctor about that next month!! So fingers crossed I get the go ahead!!!! Wish me luck 



Peace & Love xxx

‘Toolbox’flare up style!!  

Finding my range ‘body fixing’ 

What does a toolbox have to do with a ‘Flare Up’??? 



When you need to fix something or you are looking to do some DIY, the first thing you will need to get is your toolbox!! There is somthing so satisfying about going to get your toolbox(even if your not very good at using it lol) 

Everyones toolbox is different as we all have some things we need to fix more then others. We will have our favourite tools and we will have things in there for predictable situations (superglue is mine as I’m constantly smashing things 😖 lol). So if a tool box is there to help mend things or to aid you in a new DIY project, why don’t we have a ‘toolbox’ for when our body and mind need to be fixed or encouraged?!! 

FLARE UP

In the world of chronic illnesses/conditions hearing or using the words ‘flare up’ is part of our everyday lives.. For those who don’t know what one is let me explain it in my own words/experience…



A ‘flare up’ to me  and many others is a time in our lives where our medical conditions worsen or becomes harder to cope with.. It’s a time when most of your plans will change or get cancelled! It’s  a time where it will normally feel like your condition is taking over! You can’t normally predict when one will come unless you know you have done somthing to trigger it (like over doing things and not pacing). I know that I get more prolonged flareups in the winter then in the summer.. I’v had my current one for nearly two weeks and it hit its peak a few days back (hopefully). Most times I can feel my flare up creep up on me! I will start getting very tiered, start taking higher dosage of painkillers and my immune system will start to slow down! My gums will start to get  itchy and mouth ulcers will suddenly appear! My blood pressure will drop which means my dizziness will also increase and my brain fog will be in full swing! These are only a few signs I have mentioned, in general all my pre-existing symptoms will start to get allot worse! 

When my flareup is in full swing I won’t be able to do most things, walking becomes non existent, Doing repetitive movements like chewing my food will be a huge task and picking up a glass of water will feel like I’m picking up a bag of bricks…. 

When I first started experiencing major flareups I didn’t know what to do! 



I would normally end up in hospital for a few days. I would end up getting poked and over drugged because my observation stats would be all over the place.. I would come out of Hosp with my Meds completely changed and bruises all over! As I started getting more familer with flareups I would learn to tell the difference between what symptoms were ‘safe’ and ‘normal’ compared to symptoms that needed urgent medical attention!! This is a very important thing to learn but it will take time!! It took me a few years to recognise when A flareup was normal or if it was somthing els.

Surviving a Flareup

Everyone has different ways of dealing with their flareup because it is a very personal thing! What works for me may not work for others… But one thing we can all do is have a flareup ‘toolbox’

It does not have to be a real toolbox (most are heavy) you just need some sort of box or container! I find a shoebox works for me! The point of this box is when you get a flareup you won’t need to run around like a headless chicken you will just need to reach for this box to get some of your stuff you need to get you through this time!!! I have different boxes as I don’t have space in my flat for a bigger box…

Again please contact your doctor before you try any new products… 

Here’s a list of what I have in mine!! 

Personal Information!-  I have typed up a cover letter of my personal information. On this it has my name, date of birth, gp details, emergency contacts, List of medication with instructions on how and when I take them, any allergies and of course a list of all my conditions including my average heart rate for sitting and standing and my average peak flow reading. I live in supported housing so it’s very important to have this ready as staff/family will need to know this information ESP if they need to contact a doctor. If you have EDS / Hypermobility you may want to write ‘please be aware that my joints dislocate and sprain easily‘ I notice that people like to just pull me up ESP ambulance staff and end up hurting me in the process… 



Spare Medication! –  I keep a copy of my current prescription and check its up to date every six months or when there are changes with the medicine I take! I will also attach to the prescription a list of any herbal/supplements I’m taking like my cranberry tablets. I keep spare meds in the box incase I have run out of my main supply! I will always have all my painkillers and anything to do with my asthma and POTs (pumps, steroids, peak flow meter, heart medication) in the box! I will also have my start up antibiotics for my recurrent urine infections & bladder catheters. I label all the meds in my box so if I have family or a carer looking after me they will know what it’s for. I also keep plastic shot glasses from poundlan in the box and I get the carer to put my medication in the shot glasses before they leave so I can acsess my meds easily.



Pain Management- other then medication I like to add things in my box that really help me deal with the pain!! I am allergic to ASPRIN so I have to be carful about what I use!  I can’t survive without  cura heat patchestiger balm, kool ‘n’ soothe patches and my hotties microwave hotwater bottle. I will do another post later introducing and reviewing these products!! 



 

Medical supplies- it’s can be a tricky thing to know when it is the right time to use splints. They do support the joints but sometimes it can’t make the joint worse… When I get a flare up I notice more pain in certain joints so I will always keep bandages in my box. I’m more likely to hurt myself during this time so having the bandages ready really helps! I will wrap the joint that’s playing for a day so it can rest up then I will remove the bandage and start to slowly move my joints again! I will also have cura heat arthritis bandages! You can get them for your knees, back and wrists. These are really cool because the tubular bandage will help hold your joint while the subtle heat from the patch will cover the joint that hurts! 

Diary- I keep a small diary in my box to write down the dates I have gone through my flareups!! I will also wrote down what I think triggered it so I can pick up and patterns. I will also write down anything that has helped me or anything that has made it worse..

Working out- I will keep a paper of  exercises I can do from my bed… I have things for when I’m at my worst to when I’m feeling abit better.. For when I’m at my worst the paper encourages me to move my small joints (toes, fingers,jaw) a bit. I won’t intentionally engage any big mucles as it is a very hard task when your at your worst but some sort of movement is better then nothing! Another thing in my box are these Cool sponges I got from hand therapy! They are used to stregthen your hands and fingers! They come in different strengths according to the colour. I like keeping one next to me in bed so I can squeeze it and keep my  joints moving.  



I also have a exercise resistance band (from Physio) 



I never look like the cartoon below duringing a flare up. I will do the same positions as her but on a much smaller scale…. You can adapt what you do in accordance to how you feel and what you can manage! I never do anything like this when I’m at the peak of my flareup! I will only move on to exercises like this once my pain is under control or I feel ready! But it’s definitely part of my plan to get through a flareup! 





(She makes it look so easy lol) you can buy the sponges and bands online to… Click here to buy one..

Relaxation- it is important to have things that will help you relax as tense mucles and sleepless nights will only make it worse! Things I have in my flareup box to help me are

  • Scented tea-light candles (so I don’t have to get up to blow them out) 
  • Meditation cd
  • Olbas oil, I put some drops on my t-shirt and pillow
  • Hand cream, my hands always swell during a flareup so the cream keeps them moisturised and I get to exercise my hands without realising
  • Cooling gel eye mask to keep the light out and to also revitalise them 
  • Earplugs, my hearing becomes over sensitive so the quieter it is the happier I am 
  • Massage oil that’s made for joint and muscle pain. (I use Benjamin healing oil) 
  • Peel of Face mask to pamper myself without moving
  • Prayers and a personalised positive quotes book to keep me happy 
  • Lip balm to stop lips cracking 
  • Body spray or perfume beacuse when you smell nice you feel nice. 
  • Dry shampoo to avoid washing my long hair 
  • Baby wipes to freshen up 
  • Favourite  songs for me to get lost in and to start moving my joints withoit thinking about it 
  • Reminder to look at my fav youtube channels to keep me busy and entertained 
  • I keep about £10 in my box so i dont have to stress about not having money to give my carer to buy me what ever i need

Food- I don’t eat well during a flareup and normally get support to come and help me make food. Even if I get some food infront of me I will still not eat well because my body it too tiered to chew and process the food so I keep a smoothie recipe In the box. My recipe has ingredients that will boost my immune system! It is also very easy for me to consume as I am just drinking it! I keep Straws in the box to so I can use them to drink my water/smoothies without holding the glass. I also keep hard boiled sweets to suck on and 100% Cacao Chocolate! It is raw chocolate, I use it as a natural antiseptic as I can’t use asprin, it’s also amazing to use as a immune boost!



VentingI keep a note that’s addressed to ‘flare up Steph’. It just tells me it’s ok to feel angry and all the other nagative feelings during a flare up but don’t bottle it up, let it out and let it go!!! This note wakes me up and really does encourage me to let it out!

That’s all I can think of at the moment but will update every time I find somthing els 

Hope this helps! Let me know what you will put in yours! 

Peace and love xxxx


Shared through http://thezippyzebra.com/?p=974

Bob Marley’s 70th Birthday 

FINDING MY RANGE ‘MUSIC’ 

Today marks the birth of one of the greatest, most inspirational artist of all time! the one and only ‘Bob Marley‘   

We grew up on his music and it has definitely helped me stay positive! My family are East African Catholic Goan’s from Tanzania, my ancestors are from Goa and I was born here, so we have a lovely mix of culture & music in our home/lives. When ever  I go back to visit my family in Tanzania i will hear allot of music especially reggae music… One of my Granny’s favourite artist was Bob Marley! I remember my Aunties (granny’s sisters) were all in a room singing some old school songs… I then noticed my granny was sitting on her own in the corner singing to herself… As I sat next to her I recognised the song! She was singing ‘Buffalo Soldier‘ lol. I also went back to a place called Katesh where my Granny brought up my mum & her siblings… It’s a rural part of tanzania but when I arrived the shops that Granny and Grandad own were playing Bob Marley lol it just shows how deep our love for him and his music is! His songs have soo much meaning and they definitely count as a  natural drug for EDS, POTs and the all rest 😊 

So in Honour of Bob Marley here are a few of my favourite  songs and quotes: 

Redemption song 



Small Axe-



African Herbsman



EXODUS –



Jamming



Stir It Up – 



QUOTES





R.I.P Mr Bob Marley! Thank you for your music and mind!! You really give us Musical Healing 

Peace and Love xxx 

How to get Disabled Tickets if you need it! 

Hey all sorry for not posting this sooner, I haven’t been well for the past two days, my glands are all swollen and CRP is high so I’m probably fighting some sort of inflammation/infection. I need to see a doctor but my lift is broken and I can’t  do the stairs. I don’t feel sick enough to go a&e so I rang 111, just waiting for a gp to get back to me… 

The reason I want to cover this subject is because I know how hard it is to do these things and theres not much help out there to show us how we can attend and enjoy events while having a disability! If they didn’t have disabled tickets I would not be able to go to most of these events 😞

I want to see more of you out there and taking charge of your life to do the things you want to do! Let’s find our ‘Entertainment Range‘ 

Please keep in mind I am a disabled customer just like you! I am not a professional  and everything below is just advice and things that work for me! 

And please forgive my spelling mistakes I tried to fix as many as I could 😊

So let’s talk about tickets for events/shows… I’m not sure how to go through this as there are sooo many things to explain but let’s try 😊

So what are Disabled/Accessible  tickets? 

To my understanding and I am no expert, they are tickets offered to people/customers with extra needs/disabilities… They are normally the same price as a standard ticket and it it should cover your personal assistant/carer at no extra cost or a discounted price .. So disabled customers who need  their own personal assistance will use this service. For concerts/festivals, disabled tickets will also get you into certain seating depending on your needs. I will explain more later on.

I have no idea what the law says in regards to this subject but i don’t think public venues are ‘forced‘ to have complimentary or discounted carers tickets, I think it’s up to the venue/business. I also think the government probably advise to allow one carer in for free/discounted. If it’s not the law it should be! 

So if you need someone with you because of your disability/health then you can buy these tickets. The ‘complimentary‘ carers ticket is for you to have someone with you who will help/support you during your time at the venue/event. It can be someone you employ, a carer or a friend/family member as long as they have the ability to support  you. 

EVIDENCE                                            

Most places will ask you for some sort of evidence supporting your need for a disabled ticket. For those of us with physical disabilities the best forms of ID to prove your disability ESP if it’s like ours ‘invisible‘ is to present your disabled freedom/travel-card  or a disabled parking permit known as the ‘Blue Badge‘. 





Both forms of ID are useful as they have your photo on it and they are  both allocated by your local town hall/city council. They won’t question your disability once you have this. Another form of evidence is a copy of your DLA (disability living allowance) certificate.       

 

             

If you do not have any of the above please consider applying for them because if you need to buy a disabled ticket or need a carer you should be entitled to one of the above.                   To those who can’t get the above or don’t fit in with the ‘criteria’ I would get a stamped  doctors letter explaining you are disabled and need a carer for whichever reason.. Iv never used a letter before as I have always had the above

GENERAL INFORMATION ON BUYING A DISABLED TICKET AT DIFFERENT VENUES ! ! 

So it’s different in different places 

Museums: most are free but for the ones that charge or if your going for a certain exhibition they most likely allow a carer in for free. Also most of the big museums like the V&A or the National History Meusum have wheelchairs & walking frames on site for visitors to use. I like the frames with the seat! 

Tourist Attractions: places like the ‘London Eye’ or a ‘Themes Riverboat Cruise’ count as attractions.. Most and probably all have disabled tickets with a free carer. You can also book these tickets online or through their telephone booking service! I always recommend buying your ticket ahead when it comes to touristic places as they tend to get very busy! Speaking about it being busy, because you have purchased a disabled ticket you can also join the fasttrack queue when entering your venue! Some places like the London eye can have queues that last for 3 hours at peak time/season so the fast track will really help! 

Concerts/Festivals:  My favourite thing in the world ATM and it’s only because I’v been to soo many recently! Last Year I saw over 30 artists preforms live!! It’s crazy now I look back… I will do a more detailed entry about concerts and festivals as its allot to take in. So the best and most of the time the only way to book disabled tickets for gigs is by telephone! Most of the main ticket providers have dedicated accessible booking lines. That means only disabled tickets can be bought on that line… Most of the disabled lines are charged at the local rate which is a huge bonus as you can bee waiting for a long time when tickets first go on sale.. Once you get through they will ask you about your disability and how it effects you, they will also try and figure out the best seating for you! For concerts they won’t ask you to send evidence of your disability but they may check on the night of your concert. Festivals on the other had will ask you to scan and email your evidence to them so they make sure that disabled people get disabled tickets which I think is really good and they accept all the evidence I mentioned earlier.. To get the number you need to call look at their website or search it on google. The main sites and venues for concerts and shows are : The O2 and TicketMaster  

Cinema: Now this one is not as easy as the rest especially if you have an invisible disability! The amount of times i argued with cinema staff is crazy! That was before I found out that you can apply for a disabled cinema card!! Yep that’s right! Most of the major cinemas like Vue, Odeon and a increasing number of smaller companies are part of the ‘CEA Card Scheme’.  this scheme has been developed by the ‘Cinema Exhibitors’ Association for UK cinemas. You don’t need a card for the cinema to make your visit more enjoyable but it does ensure you get a complimentry carers ticket! The card is the same size as a oyster or credit card which is perfect because it fits in your purse! 



It cost £10 a year to be part of this scheme but it’s worth it!! Here’s the link to apply: https://www.ceacard.co.uk

Theatres: most theatres in London have really bad access because they are old buildings… The best way to get a ticket that suits you is to ring them up as they will tell give you the best advice… Again your carer ticket should be free and you may get a consession price because the buildings are not that accessible. Look at this link for more info http://www.officiallondontheatre.co.uk/access/

Theme Parks: there are many theme parks/fairs around the UK. To be honest I have only gone to Thorpe Park since my EDS became a problem. Their websites will give you the best information. You can buy disabled tickets on the site or through their booking line. You will get a carer in for free. Also when you enter ask them to point you in the direction of the disabled access   team or customer service. When you get there you can get a access map of the park and also any other important information. You will also be given fast track  bands so you can jump the queue and won’t have to wait in the main queue.. They take all the Id listed above but I would also get a doctors letter saying you are allowed on the rides especially if you suffer from POTs

TRAVELING IN THE EU: I recently went to Disneyland Paris!!! It was a dream come true!!! Honestly I am obsessed with everything disney but could never afford to go. Then I saw a deal on groupon for £99 trip by coach including the ticket entry! Will tell you about it another time 😊. 



Anyway your carer goes for free and you also get to jump the queue for rides.. They have other arrangements too like disabled seating and so on… You will need to take your blue badge as it is recognised in France and can be used all across Europe. If you don’t have one then you will need a stamped doctors letter!  Please research any attractions outside the UK! 

Advice 

Hope this is helpful and please contact me with any questions also comment any useful advice and links we can use in regards to disabled tickets! I have added links throughout this blog. Click on any highlighted blue words to take you to relevant sites…

Just a few extra points:

  • Always ring the venue before purchesing you ticket especially if it’s your first time 
  • Look for reviews online regarding disabled tickets 
  • Most big venues like arenas and theme parks have disabled parking 
  • Don’t be afraid to ask! Most places are very helpful especially if you are honest about your condition. The staff are not psychic! So make sure you communicate your needs and any worries 
  • Work out the safest and easier route to your Vanue before the actual day 
  • Always be prepared 
  • Bring any medication you need, bring Id, make sure you have your medical ID card/braclet on. Also I bring a copy of my prescription just incase 
  • Bring your own food as these venues are pricey
  • Check restrictions on liquid items including water and even if the venue says no to bringing water but you need it please talk to the manager and explain why you need it! They normally make exceptions 
  • Always look out for the fast track queue 
  • Ask your doctor before attending anything your unsure about
  • Keep an eye on for this sign! I like to call him Angel! Lol
  • If you have a friend or family member who looks after you for free take them to your concert! That means your not paying extra for an employed PA and if they are willing you can split the price of the ticket if the carer ticket is complimentry! I do this most of the time because it’s allot nice being with someone who will enjoy it with you! Also allot cheaper especially if your on a low income 
  • Use google!!! Put the word disabled next to your venue/event details in the search engine and it will take you to the page you need instead of looking around 
  • If you have any problems or issues make sure you voice them to the company! I will deal with the situation as it happens. If you are still unhappy complain in writing!  Email is the best form at you have proff! I always out them on Twitter first to get their attention then follow whet they suggest when they reply! It’s the most effective way! 
  • Give the venue feedback it’s your responsibility! Praise them on things that have gone well and also advise them on things they can improve! We want the venues to have a good relationship with disabled customers! So have good communication with them! 

Ok think that’s enough I will probably go through each venue and review them later on! Please share this with anyone who will benifit from this 

Good luck and I hope to see more of you going out there to do the fun stuff because we can!! 😊 

Peace and love xxx

Ps : the wireless lineup has got even better!!



 I got my three day pass! After you buy the ticket they will send you an email asking you to send evidence of you disability and an application form to get access to the platform and a carer! You have two weeks from the day you purchsed the ticket to fill out the form.  

You can buy your tickets from the website http://www.ticketmaster.co.uk/wireless

Or ring them on: 02071952133 

I rang them to book the tickets and I would  advise you to buy them over the phone to! It’s better to talk to someone and ask them questions before you purchase! LET ME KNOW IF YOU ARE GOING TO THE LONDON DATES!!





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FESTIVALS & CONCERTS for VIPs (disabled tickets) 

It’s 2am in west london. I am wide awake like a true Insomniac and i’m not feeling sleepy AT ALL!!  But I am feeling over Excited!!! It’s finally starting to snow outside and 

At 9am Wireless festival 2015 tickets go on sale!!!! 

It’s London’s 3 day urban music festival like no other!! I’m a huge hiphiop/r&b fan so this festival gets me very excited!!!! As the months go by they will be adding loads more artists to the bill!! Here’s the line up so far!!! And a link to their website  http://www.wirelessfestival.co.uk



I think i was 16 when I first got interested in concerts & music festivals properly. I had been to local music events at places like the Notting Hill Carnival, Portobello Market and at the Tabernacle (a local community center at the time). I had also been on music chart shows like ‘Top Of The Pops’ and ‘CD:UK’ any one remember these tv shows? 

That was all before my EDS and other chronic conditions took over!  It was also at my worst point health wise at 16 and a half years old. I never dreamed let alone thought I could go for events like this back then!!! It wasn’t till 2013 that I decided to research going to a concert because ‘Queen B, Mrs Carter, Sasha Fierce BEYONCE‘ was coming to London!!! And it was for one of my favourite albums of all time!!!  



So at the age of 24 I was finally brave enough to take control of my conditions and fight for what I wanted!! 

She was playing at the O2 arena North Greenwich!! I am an O2 customer so I got priority to buy tickets before general sale! So I singed up with AXS the ticket provider website and sat on my computer From 8.30 am waiting in a virtual room to be let into the site for 9am! I was soo excited yet soo nervous!! My plan was to buy two tickets to see Beyonce! One for my Carer and one for me.. 9am came and just like magic purchasing options became available!! I have never done this before soo it was all new! I added my two tickets into my basket but every time I tried to checkout it would say something like ‘There are no tickets to purchase’!!! 

Aghhhhhh What Am I Doing Wrong! Thats me screaming down the phone to my friend lol 

After 30 minutes of trying, we start to see the social media sites blow up with status updates announcing: BEYONCE PRE SALE SELLS OUT IN UNDER TEN MINUTES!!

I was soo upset! It took allot of courage to get me to this point and I couldn’t get a ticket!! 

After my mini breakdown I realised I had been upset over Presale and the rest of the tickets will be on sale the next day!!!! 

Ohhhh everything changed in me!  I was no longer trying to sit at a computer patiently to get tickets.. I now knew I was going in to a battle!! As I did more research into making sure I got a ticket, I stumbled across a button with information for people with Access Needs!!! I wouldn’t have clicked on it if I didn’t recognise the familiar blue wheelchair user logo! 

I had just found the Magic Button for all thoes living with disabilites!!! As I read through I found out that most venues provide special seating for people with disabilities and that your carer will be allowed in free of charge!! Then I found something even more magical!!! O2’s DISABLED BOOKING LINE!!!! An 0208 number that will solve all my questions while providing me with a the most appropriate seating for me to watch the concert!!! I didnt waste any time and rang that number straight away! I know they said pre sale had sold out but at least I can talk to somone about my best options for getting tickets the next day!! I spoke to somone from the accessible booking team and explained its my first concert and I suffer from this and that. The lady I spoke to was very nice and the first thing she said was we still have one more disabled ticket on Presale, would you like to purchase it? I paused is disbelief.. I then said I need two tickets as I need a carer! She then explained that most events allow a carer for free when needed and that the ticket she offered me included a carers ticket!!! 

I was over the moon!!!  I then paid for the ticket so fast!! I had finally purchased  a concert ticket and realised how easy it is to deal with when its at big venues!!! 

So that was my first experience! And I have loads more to tell but I need to try and get some sleep…. This post has taken me an hour :-/ 

A detailed page about disabled acsess tickets can now be viewed here 🙂 

Night 

Peace and love xxx

 

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Swimming with EDS & HMS 

Afternoon All!! 

Can’t believe it’s the 2nd of February already!! 2015 is flying by!! 

For over a year now I have been going swimming every Monday at 7.30  with the help from a carer! I have tried so many  exercises but swimming seems to be the best fit! The cool water helps my POTs stay under control and being in the water makes it allot easier to move without putting weight/pressure on my joints! It took me a while to figure out what I can and can’t  do in the water!! But it’s definitely worth trying! Most pools are accessible but always call and check! If you are on DLA you can most probably get a free swimming membership for you and your carer…  Again ring up your pool and inquire! Don’t forget to ask if they have a hoist for those who can’t use the steps to get in and out the pool.. You can also ask for a tour of the facilities before you go for your first swim so you can make sure everything you need is provided

About 4 years ago I had hydrotherapy for my EDS at UCL hospital London… The physiotherapist taught me loads of excercises– mainly strengthening ones. My favourite thing to do is to use a pool noodle! It’s a must have for anyone with joint and muscle problems… 



I do an exercise  which you can do even on a really sore day!! If I didn’t have this excercise I would not be able to go swimming! 

There are so many ways to use a noodle and you can workout many different mucles with this simple accessory 

I love to use it for my core mucles! 20-30 minutes of this once or twice a week works wonders and really helps with stability and I found my balance starts getting bad when I stop doing this exercise 

Your local pool should provide noodles… If you are unsure ring them up and ask! If they don’t then ask the manager if they can provide some…. You can also buy them online or in stores like argos and the large super markets.. They tend to start selling them from March till the end of summer… I have always bought mine from my local poundland!! It’s cheap, efficient and I don’t have to feel bad when I leave them in a hotel when I’m on holiday 😄

Once you get that sorted it’s time to go in! Please do take someone in with you for support wether it’s physical or emotional! Also let the life guard know of any health issues that might effect your swim like POTs!  I would also advise you get the go ahead from your doctor before you start swimming!

I always swim in the the small pool which is normally the children’s pool! My swimming pool offeres women’s only sessions at 8am for an hour on Mondays and swim for all every day between 3pm and 4pm! It’s allot quieter at these hours and you can concentrate on your body in the Pool without the pressure from the more advanced swimmers…

Always keep a bottle of water next to the pool and any medication you may need like an asthma pump.. Also buy goggles if you are going to swim… 

Technique! 

When you first enter the water dip your head under the water to get  used to the temperature… Then start stretching! Do what ever stretches you would normally do! Don’t rush take your time! 

So your in the water with your noodle! I use two noodles as its more stable! Walk down the length of the pool till the water is above your waist but under your chin! I always go to where the water stops between my elbow and my shoulder.. You want to be able to touch the ground without tiptoeing and you want to stay next to the pool wall so you can hold it for support. Take your noodle/noodles and make a horseshoe shape then place it under your bum so your sitting on it while holding onto the side of the pool for balance.. You should look like this random cartoon lol 



 Once your sitting you will notice your basically floating with your legs dangling… Try and keep a straight  back and keep your balance by moving your legs…  Engage you CORE MUSCLES! Once you get the hang of it let go of the wall and do it without support! This will really help! Start of with 5 minutes or less and then build it up! I don’t really do over 40 mins!! The days I have a flare up and actually make it to the pool I will only do stretches and this exercise! It’s normal to feel tiered after! 

That’s it!! Let me know how it goes for you or if you have any other tips and tricks. Swimming helps me but it’s different for different people… So give it a try 😊

Peace and love xxx

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Finding My ‘Range’

Helloooo to anyone who finds this page! 

I’m new to all of this and thought I would give it a go!! My CBT counseller told me the best way to deal with the million and one things running around in your head is to write it down! So I tried to keep a diary but because im dislexic and have a short attention span i gave up on that idea pretty quick 😳 but let’s face the main fact here!  I love using my phone and I love using the Internet so this seems allot more promising!!! 😄

My name is Steph, I’m 26 and live in West London, UK… I am a volunteer film maker and also a face painter… There are a hundred things I could tell you about my self right now but I think it’s best to let things roll out naturally and it will give me something to write about later on…. 

I Suffer from a few health conditions… The main one is  called Ehlers Danlos Sydnrome type 3 (eds), it is also refered to as Hypermobility Syndrome (HMS)… I have had this since I was born but i was only diagnosed at 16/17… I also suffer with Postural Tachycardia Syndrome (POTs) since I was little but was only diagnosed at 21

I basically suffer from allot  of pain due to unstable joints throughout my body!! I dislocate and sprain my joints nearly everyday… And it also causes a number of other health issues that are not related to my joints but are connected to having this condition!! I know it’s abit confusing lol 😝 here’s a link if you would like to learn more: www.ehlers-danlos.org

Having hypermobile joints mean I’m very flexible and bendy!!  For some this has allot of benefits and they can live without any pain and dislocations… But for people with my specific condition it’s a completely different story!!! and the main thing the doctors seem to say is to learn to keep your joints at a ‘Normal Range‘ 

Iv learnt over the years that the ‘Normal Range‘ is something that you have to work out on your own because every ‘body‘ is different! And you also have to find your ‘Normal Range‘ of your soul/spirit!!! We are not just a body we are people and that means finding what is ‘Normal’ to YOU

My blog will probably be very random and will be about anything that I feel I want to write about which will include what I go through and how I deal with it!!! IT being health concerns to a lipstick I really like or a random song that pops up in my head 😄

So join me on my journy in

               ‘Finding My Range’


Peace & Love xxx

Ps, please forgive my spelling mistakes I have tried my best to correct as many as I can 🙂 



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