Disabled Revolution  Anyone? 

  

  
It was a long night and day yesterday in the UK with some of us waking up to the horrid news that David Cameron, leader of the Conservative party will be our priminister again for the second term and what’s worse is that there is no coalition this time so it’s pure Tories!! As a young disabled woman living in central London this is really hard news to digest.. I have seen and experienced how much suffering sick and disabled people have gone through in the past 5 years and as a young person I have seen all the services that were helping me live a supported and progressive life vanish before my eyes… We have been treated like the lowest of low for being sick and not being ‘able’ to work! We are living in a country where people automatically believe sick/disabled people are just a drain to society  or we are all lazy and just want to live on benifits! How are we MENT to work without support or suitable jobs! 

  
I have been on benefits for maybe 7 years now.. I have never had a ‘real’ job as My illness progressed when I was 16. I would love to work but with my health conditions there is nothing out there right now that I can physically do or earn enough from. Saying all of that I don’t believe that I’m getting money from the government for not doing anything! I am a positive member of society that works as a person for the community! I volunteer as much as I  can to local charity’s, I speak to and help as many  people as I can about issues they are having! I educate people on my illnesses and disabilities, I am always there for my friends and family and most of all I am there for disabled/sick people! So many disabled/sick people really help and support each other! I think that’s the biggest ‘job’ of all! We shouldn’t be named unemployed benefit receivers  we should be called ‘undercover heros’ or ‘expert advisor to the people’ lol no one with an ‘official’ job can do the work we do to support and educate each other! I honestly think if we didn’t communicate with others or just sat in a dark room quiet it would be a very horrible and a hard world out there! We are the experts and I think its about time we get recognised for it!! We need a disabled revolution! We need to stop all this bull shit thinking others have of us! We are not benefit scroungers, we are not useless but WE ARE the soldiers that show everyone that you can do anything you put your mind to! WE ARE the fire that burns through all the bullshit and WE ARE some of the most important and influential people in society!  

  
I know it can be hard to stay positive but we need to! Even with the government we have today we are  still lucky to live in a country where  people do support us and we are lucky to have free health care and financial help! Allot of countries don’t have this! So we do need to praise the good while recognising the bad but don’t let the government make us disabled! We are amazing people with soo much knowledge and power! So I say fuck all the nagetivity and bullshit and join together to show everyone what we are made of and why we are key to the running of this country!!! We will stick together and rise together and do anything in our power to stop any injustice thrown our way! The next five years are gong to be very interesting! So lets continue to be open and out there! Fight for what you believe in and continue to reach out to everyone you can! We are the force for change and equality! We are the soldiers and most importantly we are the PEOPLE

So let your voice out in any way you can and fight for what’s right!!! 

  
  
PEACE & LOVE XXX


Other posts that you should check out 

How to get disabled tickets of you need them 

Chronic illness Flare up plan 

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CLEAN HAIR LIFE HACKS

Hair comes in all shapes and forms! Some have long hair some have green hair but we all have one thing in common!! washing our hair!                   Well most of us like washing our hair 👇👇👇 except for Luke of xfactor last year!! 



I love washing my hair! Honestly the shampoo smell and then the silky conditioner!!! It makes you feel soo refreshed, it smells great and it really feels like your washing all your pain away!! But for thoes of us with EDS, Fibromyalgia and other chronic pain conditions, washing your hair can be the hardest thing esp when it’s long hair like mine!!!



Currently my hair is just above my lower back! So you can’t see all of it in the photo, I’m going to get it cut soon lol but iv always had my hair long and  having long hair with pain is not the best combination.. There are allot of days when your too weak or tiered to have a shower, or you have had a dislocation and the worst thing would be to wash your hair!! 

CLEAN HAIR LIFE HACKS are the only way I have managed to keep and maintain my long hair so here are some hacks that help me 😊

DRY SHAMPOO 

Dry shampoo is a miricle worker!! Everyone needs this!! There are soo many types of dry shampoo and for different types of hair! They also all give your hair volume!! 

Batiste Dry Shampoo Aerosol  



Im sure allot of you have heard about this brand and their range! I think this is the first dry shampoo I tried about 5 years ago! Back then they had a tiny selection but now they got a huge array of products with amazing smells and they even have ones for dark hair! 

  1. So brush you hair! Then shake the can like you would with hairspray
  2. Now hold it about 10cm away from your scalp and spray where need it! I normally spray on my crown 
  3. It comes out as a greyish powder!  Now it’s times to use your fingers to massage it in! This will absorb the excess oil! You can also brush it out! I normally turn my head upside down and rub my roots this creates more volume 
  4. Don’t spray on the ends of your hair just the scalp 
  5. Replete if needed

My fav from this range are these three!! They smell like holidays lol 



Herbal Essences

Soo many other hair companies have now got a dry shampoo range! I’v stoped using the Batiste range recently because im inlove with the dry shampoo by Herbal Essences!! It smells just like their shsmpoos. I literally spray it all over my scalp and rub it in! You can get mini cans for your bag to!



VO5

Another great product is the VO5 Plump It Up Dry Back Combing Spray now technically this isn’t advertised as a dry shampoo but it sure works like one!! I love using this on nights out! I use the spray before I curl my hair so I know what the volume is like! Again you use it in the same way but this one will give you soo much volume so you don’t really want to brush it out!! 



TRESEMME

For thoes of you with wavey or curly hair I would be cautious about the above as it may make your hair static or frizzy but don’t fear I found a really nice dry shampoo mouse by Tresemme it’s called Instant Refresh



  1. So shake the bottle gently to mix the product 
  2. This comes with a pump! I use one pump at a time! It comes out like a wet mouse 
  3. Scrunch this in the ends of your hair and even your roots! 
  4. It smells refreshing 
  5. It does make your hair a little wet but give it 5 minutes and  will dry! 

I love this product as you can use ur everywhere! It does not give you volume but it makes your hair look like it’s just been washed! I tend you use this allot in the summer and when my hair is Curley or wavey 

TALCUM POWDER 

Good old baby powder!!! what would we do without it!! It’s got a comforting smell and can be used for soo many things! If you don’t have dry shampoo at home or want a cheap alternative then it’s time to get the talc out!! 

Excess oil from you scalp and dirt make your hair greasy! So using Talc really help absorb the oils! 

  1. Brush your hair 
  2. Take a tiny pinch of talc on your fingers and rub it in the areas of your scalp that need it! 
  3. The brush it out or keep massaging it in so you can no longer see it! 
  4. Be careful not to put to much as it’s very noticeable ESP on darker hair 



That’s all I have for now and will update if I find anything new! If all fails invest in a good hat!! Lol 



Please share any advice you have!! Take a look at more life hacks here 😊

Peace and love xxx

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Let’s talk ‘LIFE HACKS’

What are Life Hacks you may ask? It’s a list of things that help me through life!



I suffer from a few medical conditions and one of the hardest to manage is my EDS and Fibromyalgia. Living with so many complex conditions can be very tricky and it can feel impossible at times. I was 16 and in the middle of GCSEs when my health deteriorated! My life turned upside-down and I didn’t recognise my body anymore I just felt lost! I went from going out with friends and family to having to stay at home or in hospital all day!! I could no longer do small things like painting my nails or making a cup of tea! Back then I didn’t think I could do anything independently anymore! EVERYTHING SEEMED LOST! 



You will be glad to hear that things have changed soo much! And I am no longer that scared and lost teenager I once was! like soo many of you I have gone through  lots of challenges and changes but for the better! I have learnt to pick myself up and I came to the realisation that If I want to see a change I need to be that change!!



I am now 26 and living in tempory (been here 4 years lol) supported housing two roads down from my parents. I am 100% more clued up about my health conditions and have oblivious grown up allot!! I now know and understand that life goes on and you just have to adapt to it! Anyone can do anything they want as long as you’re smart about it and have self belief! 



I have learnt loads on my journey so far especially when it comes to making sure I live my life to the fullest ontop of keeping a healthy balance between my life and my health conditions! But I’m telling you it’s soo hard ESP in the beginning! But I’m trying my best a and I couldn’t live like this now without my ‘life hacks’

LIFE HACKS

Life hacks are basically things that help you in your life to just be you! This is just an introduction to ‘life hacks’. There are soo many that it would be too complicated to write them here so visit my Life hacks page to read the different posts!! I will keep updating that page 🙂

Please send me your advice and life hacks and I will add them to the page to 🙂 lets go!!! Click here 

First post 👇

To read ‘Clean Hair Life Hacks’ Click here 



Peace and love xxx

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Instagram!!

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 



‘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


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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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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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