Ehlers Danlos Syndrome Awareness #3

31 May 2014

Okay this is the last of the posts that I'm going to squeeze into EDS awareness week. I thought I would write a post mentioning some of the things that I need help doing that healthy people take for granted or carry out as if it was nothing.

Walking
I cant walk very far and use a wheelchair but even the short distances I do every step I take hurts. I am very aware of how much I am walking and how my joints react to it. I can feel every step in my ankles, knees, hips, back and even my shoulders. I get pain when walking and then extra payback pain once I've finished.

Showering
I tend to only shower at night because I use what little energy I have left, then I just have to go to bed. None of this quick shower in the morning to wake me up malarkey. Showering is exhausting and takes so much of my energy. Yes I sit down in the shower but all the raising arms and warm temperature is so draining. I have to take breaks between the different parts of showering and some times I cant even do that. I'm 21 and some days my mum has to shower me. I then get out the shower & have to have a rest before tackling dressing/wrestling with clothes. There is no way I can shower every day, that takes energy I just don't have to spare and I have to try and plan when I can shower around what I am doing what days.

Getting Dressed
Me and buttons do not get on. I tend to have to buy denim shorts or anything with a button a size bigger so that I can pull it on without having to undo the buttons. My fingers just fall out and give up the fight way too easily. Clothes that go over my shoulders also tend to have to be a size bigger as dislocated shoulders stuck in a jumper over your head is really not that fun. I have ended up stuck in my clothes screaming & having to be rescued by my mum a few times. Bras are also my enemy. Not only are they a faff to get on but man my ribs really dont like them. Yesterday I put on pair of tights & then found a hole in them but I was just too exhausted to have to go through that again so I just rocked the grunge look. Sometimes even the weight of my clothes on my skin is so painful. I have to wear light, soft clothes. Also about 75% of my wardrobe is pyjamas, and sweats

Eating
My body has so many issues with eating. Anything too chewy or big or hard *smirks* results in a dislocated jaw. I cant cut up meat. Even swallowing can cause problems. My throat forgets how to swallow which results in me spitting whatever was in my mouth at the time (behave) across the room in an explosion. Don't ever sit opposite me at a meal. Dislocated oesophagus, yeah I didn't realise that could happen either until I cried drinking vimto, has to be the most painful thing to ever happen to me. I also have a tendency to drop what I am carrying so am not trusted carrying my own plate to the table. Plus actually fighting my way into packets/jars is never very successful and usually results in my injury. I also have problems with digestion and suffer with really bad nausea, acid and stomach pains.

Sleeping
As mentioned in my previous post, sleep is difficult and the sleep I do get is un-refreshing sleep. I could and have slept 16 hours and woken up feeling like I haven't slept at all. I also have to surround my self with so many cushions to prop certain body parts up. I have 2 V shaped pillows to support my hips & I always need a pillow between my knees. I also constantly switch between being too hot and too cold

Stairs
Stairs are my arch enemy. We really don't get on. The amount of injuries I have had from stairs is ridiculous. I fall up them, down them and dislocate things. At uni I live in a ground floor flat so coming home & having to climb stairs to go to bed is always a shock. I usually have to take a break half way up. There isn't even that many steps. I have also had to sleep on the sofa because I just cant manage the stairs

Going to the toilet.
So not only do I have to pee a lot, I mean its ridiculous how much I have to pee, but all that sitting down and standing up takes its toll on the old knees. I need a raised toilet and grab rails to make it easier. I always forget how much this helps until I sit on a normal height toilet and then injure myself standing up. Never very glamorous when you need rescuing from the loo.

Making Plans
I cant make plans. Its impossible because I never know what my body is going to do and if I'll have a good day or a bad one. Also I can go out in the morning and after a couple of hours, suddenly go down hill & have to go home to bed. It does mean my life is more spontaneous though

Leaving the house
Some days even leaving my bed doesn't happen or is like climbing Everest. Some days the trek from my bed to the sofa seems like a marathon so leaving the house is not gonna happen. When I do leave the house I have to make sure I have my meds, extra painkillers, my phone in case I need help, my radar toilet key (tiny bladder issues), walking stick/crutches. If I go somewhere I need to know there's parking close, toilets and lifts.

Socialising
Sometimes I'm just in too much pain to be able to socialise, no matter how much I want to spend time with my friends. Pain and fatigue effects concentration which makes conversation difficult. I also get noise and smell sensitivities and too much makes me feel sick, gives me a headache and even makes me feel dizzy. This also makes reading or watching films difficult

Being on your own
I can be on my own for a bit but I need someone with me most of the time in order to cook for me, make sure I eat, help with washing & dressing on bad days, doing the cleaning, picking me up when I fall (literally). The list goes on. There is so much I cant do on my own. 

There are so many more little things that I need help with.
I am so grateful that I have such amazing family, friends and carers who help me so much. I have no idea how I would cope without all the love and support I have. My mum is my rock and my biggest support. My family are pretty amazing.

Beth...x

Ehlers Danlos Syndrome Awareness Month

30 May 2014

So this month has been Ehlers Danlos Syndrome (EDS) Awareness Month and as I was crazy busy with exams and moving back home I didn't get around to writing any posts so I'm going to fit 2 into the last 2 days. Sorry this is gonna be a long one. 

EDS is a hereditary genetic condition that I have and my dad and little brother also have it. We are pretty awesome and I think it makes us extra amazing however it does have some irritating down sides. I'm gonna explain what it is and tell you a few ways it affects me. I would love it if you could read and share as not many people know about it and we are treated like frauds including by some medical staff.

It took me 10 years to get diagnosed with symptoms from birth and I was lucky. Thats an early diagnosis in the EDS world. I was accused of faking it, attention seeking and my mum was accused of making it up and having munchausen syndrome and then my parents were accused of child abuse. We were then told I had leukaemia or bone cancer. A surgeon then wanted to cut off my legs because they hurt so obviously that would solve all the problems. It was just luck that the last Dr my mum was willing to take me to recognised the symptoms as I was walking in the door. 

EDS is a rare inherited condition with disruption of the strength of structural proteins in skin, ligaments, cartilage and blood vessels, leading to fragility of connective tissues. As EDS effects the connective tissue every single part of the body is affected.

There are several types:
Classic Hypermobile type - Most common and often not diagnosedVascular type - Overall median lifespan is reduced to 48 years.Kyphoscoliosis type - early progressive fibrosis and severe motor delay.Arthrochalasia type Dermatosparaxis type 

I have the Hypermobile type with some of the symptoms of classical merging. Symptoms from the different types do tend to cross over.

So my main symptoms are

- Dislocations, a lot of dislocations. I stopped counting the times my knees came out after it got beyond 20 in about 6 months. I can dislocate a finger doing up buttons, my wrist came out of place when I wasnt even doing anything the other day.

- Subluxations. This is when the joints partially come out of place. I get these daily and sometimes hourly.

- Pain. My muscles & ligaments have to work so hard to keep me in place that I ache constantly. Imagine how much you ache after a workout, well thats what my bod goes through just lying down. The dislocations and pain is why I use a wheelchair

- Fatigue.  Now Im not just talking about being a tired Im talking about being completely exhausted without actually having done much

Insomnia. We have issues with our adrenalin production so sleep is very hit and miss. Most nights I get about 6hrs broken sleep but I have weeks where I only get about 3.

- Fragile Skin & Easy scaring. I have a scar from where I accidentally scratched myself, a shaving scar and a scar that I have no idea how I got it

- Poor Circulation. My circulation is so bad, my hands and feet are permanently like blocks of ice and you will quite often see me rocking the shorts and fluffy socks look. It will catch on one day 

- Digestive System Issues. This results in nausea, pain, acid etc. Some weeks I can barely eat. I often live on mashed potato or brown rice. 

- I have to take at least 10 tablets a day and then painkillers on top of that just to function and not be left in a bed bound crippling mess

There are so many more symptoms, the list goes on and on and every person with EDS is different. Everyone has different symptoms with different severity.

I also have to wear some really attractive supports and splints to stop me falling apart some days 








I don't want to be too negative though so here's a few plus points

- I have met some amazing people on twitter with the same or similar conditions and have made so many new friends

- I can use my feet as extra hands. Helps with wrapping presents, picking stuff up without bending and as a baby I even used to drink my bottle with my feet


- When shaving my legs and painting my toenails I can get bring the leg to me. I have no idea how non bendy people do that

- I don't have to wear shoes in summer when Im in my wheelchair so no tan lines or I can wear super massive heels and not have to attempt to walk in them

- I have a fabulous silver walking stick with pink spots. I mean c'mon it is pretty cool

- I can scratch my own back

- My body is pretty amusing. The amount of people that freak out when they first notice how far my knees bend back makes me laugh every time.

- We have super soft skin so look younger and our skin has been compared to velvet. 

- My medical knowledge is pretty good. I know so many long words which is always impressive right?

- If anyone ever annoys me I just have to warm my freezing hands up on their nice warm back and they squeal and I feel instantly better

- I can also make smiley faces out of my meds


If you want any more info this is a really good Site and also has a message board you can sign up to to

If you have any questions or have been diagnosed or know someone who has and feel lost please leave a comment, email me at mermaidindisguise@outlook.com or you can find me on twitter here

Beth...x

Bourjois Rouge Edition Velvet Lipstick

29 May 2014

The other day I decided I was going to post on Mondays, Wednesdays and Fridays and then my happy post on Sundays however I already haven't managed to stick to that. However you get 2 posts today as I've reposted one from my old blog. 

Anyways, today I decided to write a post on by far my favourite lipstick at the moment, Bourjois Rouge Edition Velvet Lipstick. Ever Since I bought these one of them has been on my lips.

I'm a massive fan of the velvet lip trend at the moment and my love started with the Lime Crime Velvetine which I reviewed here. I do adore my Lime Crime but at £13.50 they are a tad pricey.

Bourjois version are amazing and I think I may even prefer them to Lime Crime (I'm planning a comparison post soon and including MUAs version).

These are £8.99 each but Superdrug currently have a 3 for 2 offer on all makeup or buy 1 get the 2nd half price on Bourjois stuff so what are you waiting for, go go go.  

So on to the actual review.

Considering these are matte they are so creamy. They go on like a dream, feel amazing on and aren't drying at all. They have a doe foot applicator which is really easy to use and makes application nice and simple. When I first applied the red I was really disappointed as it came out quite sheer but when I put on another coat and waited for it to dry (2 mins tops) I was amazed by the colour pay off. If you are a lover of bright lipsticks then these are for you but don't worry if you're not as they do a few more neutral shades. 

The lasting time on these is amazing. I wore mine on a night out and didn't have to top up once through eating & drinking (quite a lot). I also may have fallen asleep in my make-up (shh don't tell anyone) and woke up with my lipstick still on and not smudged up my face. When it does fade it fades evenly to a gorgeous stain. The only downside I have found with this is it does stain. When I take my make-up off night I do end up with a bit of a stained lip.

I have Hot Pepper and Pink Pong and I think Hot pepper is my favourite but it's a close one. Hot Pepper is definitely my most worn Red lipstick at the moment









Top: Pink Pong
Bottom: Hot Pepper

Hot Pepper

Pink Pong

Have you tried these yet?
Which one is your favourite?

Beth...x

Lime Crime Velvetine Red Velvet

I'm reposting this post from my old blog.
This was bought for me by one of my best friends for Christmas. I don’t think I have been more in love with a lip product ever. It is a liquid to matte lip stain and it is amaazzing. It dries super matte but it’s not drying and it doesn’t pull or cling to the dry patches. I’ve heard some complaints of it bleeding but I haven’t had this issue. One of my flatmates complimented me on it so many times and couldn’t stop going on about how it actually looked like velvet (he may have been drunk at the time but it still counts).
The Lime Crime Velvetine in Red Velvet has to have one of the best lasting times of all the lip sticks I own. There is very little transfer onto glasses if any and once its dry (few seconds) your good to go. I think I reapplied this once on a night of drinking and even then it was only a little touch up. I do find that with my not so very steady hands it is not the easiest product to apply due to the shape of the applicator but it can quickly be tidied up and the benefits far out-way that one downside.
Extra plus points, I love the packaging and it actually smells like cake or vanilla or something like that. In short it smalls amazing. At £13.50 its a little pricier than I usually pay for a lip product however I definitely think it is worth it.
I am now tempted to get suedeberry and pink velvet. Especially pink velvet. Who am I kidding? Soon these two will also be in my collection.
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To purchase Lime Crime in the UK you can use Cocktail Cosmetics or Cute Cosmetics
Anyone else in love with these?
Beth…x

10 Things That Made Me Happy This Week

25 May 2014

I'm thinking I'm going to do a post like this every Sunday to remind me of all the good things that happened during the week. So here goes. The 10 things that made me smile

  1. Finishing my last exam on Monday
  2. Buying a new dress
  3. Having an epic flat party to finish the uni year (hangover not so much)
  4. Spending the day with my friends sunbathing and eating away our hangovers and catching a very slight tan
  5. Getting a smaller chain for the charm bracelet I got for my birthday 2 weeks ago so I can finally wear it
  6. Coming across so many lovely people in Cardiff who made getting around a busy shopping centre in my wheelchair super easy and very pleasant
  7. Buying new glasses with moustaches on
  8. Going exploring to avoid revision (technically the week before but it made me extra happy so still counts)
  9. Finally having time to blog
  10. Being home so that I can use our amazing wet room and having the best 30min shower ever.


Penmon Lighthouse

Newborough Beach



Menai Bridge

                

                       
        
                         
My Gorgeous Bracelet

B&Ms finest
What's made you happy this week?

Beth...x

                              



My Revision, Bad Pain Day or General Lounging Wardrobe

5 May 2014

With serious revision time upon us and the fact that my pain is spiking at the moment due to me forgetting that I do actually have a chronic illness and over doing it recently I thought I would share with you what fabulous and comfy clothes I wear during these fun times.

Revision and Bad Pain Day Wardrobe


This Is What Perfection Looks Like T-Shirt £8
Mens T-shirts are always better than womens. They have room for large boobs unlike some womens T-shirts which is weird because it tends to be women that have big boobs. They are also long enough. None of this riding up or cropped business. Plus they usually have cool prints/logos on them.
Check Print Pyjama Bottoms £8
Oh pyjamas what would I do without you. I would say 50% of all clothes I wear are pyjamas. I have so many I had to empty a second draw of real clothes to accommodate them. So comfy and obviously super stylish. Also great for days when my skin is freaking out because they are nice & light and don’t touch my skin too much
Ribbed Vest Top £3
Vest tops are the majority of my top collection. I always get too hot so vest tops are great. Plus light and comfy.
Lonsdale Core Jog Mens Sweat Pants £7
I may have become obsessed with these when I stole a pair from my brother when I was ill one day and needed to go out but apparently Sonic the hedgehog pjs weren’t acceptable and these were the next best thing. They are soo comfy and great when you need to go out somewhere and have to change out of the beloved pjs. I also may have slept in them a few times when I have been too exhausted and in too much pain to change for bed.
Slub Vest Top £7
Another vest top which is light, cool and nice and long.
Navy Hudson & Rose Drawstring Shorts £9.99
I got these the other day so that I didn’t spend every day chilling in the flat in my beloved pyjama shorts. I thought this might make it look like I had actually got dressed and had my life together. They are so comfy and even though I thought they were a little pricey for casual bumming around the house shorts I love them and have worn them every day and they are now in the wash :(
Grey & Black Stripe Trim Knee High Socks £3.99
I have a slight addiction to socks but I have an excuse. Crappy circulation from my Raynauds means my feet are always freezing hence the large collection of socks. I love knee high and over the knee at the moment and I really want these pairs.
Mr Cool T-Shirt £8
Once again baggy mens shirts are the way forward also no one can tell you aren’t wearing a bra
Athletic Works Neon Side Piped Cropped Leggings £5
Okay so these are supposed to be for exercising but they are so damn comfy I cant help but lounge around in them.
Mint Green Hudson & Rose Authentic Sweater £14.99
Massive fan of these sweaters as they aren’t as heavy as hoodies.
Front Zip Sports Bra £8
For those days when you need to wear a bra but normal bras are too painful (stupid things) sports bras are great. This one is awesome because it does up at the front so no wrestling trying to get it on and popping out shoulders.

I also did a post on my revision tips over on my more lifestyle blog which you can find here

So what’s in your super fabulous highly stylish comfy wardrobe
Beth…x
LAYOUT BY MINTY FOX DESIGNS