Tuesday, 26 August 2014

Why people with chronic illnesses dislike #challenges

First things first. Let me just say this is not a stab at any genuine efforts to raise money for charity. I, perhaps more than many understand the value of charity and how much it is needed. It really should not be the case that it is, when it comes to medical funding but sadly it is and without it many people that are facing a chronic illness would have no hope. I am one of those people. So in no way would I ever dislike such efforts.

The issue comes when a fundraising concept turns into a social media phenomenon. In one way this is great for awareness, getting celebrities involved and sharing with their millions of followers is a fundraising dream. But somewhere along the way the charity and awareness drop off. What was the #ALSicebucketchallenge just becomes #icebucketchallenge. People get caught up in watching famous people scream and then daring their mates to do the same, because 'it will be a laugh,' or you want to get your own back. The illness it's in aid of gets forgotten. It took me a good few videos until I found out it was actually for charity.

The ice bucket challenge was devised to mimic the seizing up of muscles that ALS, or Motor Neuron disease as it is also known, patients experience. A lot of thought went into what would be an applicatble fundraiser for this devastating illness. So to all of you that have done the challenge and actually made people aware of the reasoning behind it and told them how they can also help to raise money if they want to, then I applaud you. I hope you've also donated what you could too.

But raising awareness and funds for diseases should not be about showing off, or wanting to upstage your mates, and forgetting why you're doing it. It shouldn't be about nominating someone, daring them, calling them a chicken if they don't. Charity is about generousity and belief in a cause not badgering. How many times do you pretend to be on your phone because you don't want to talk to the charity people on the street? Saying I nominate you to do this is also saying I nominate you to give away your money. Something I'm not sure you would say to someone, unless they were Bill Gates or the like. Why not just say 'I'm dong this to raise money for ALS and if you would like to donate here's how?' (Details at the end of this post.)

I know, people go to great lengths to raise money for charities that they believe in but the difference there is that they always stay true to their goal and the reason why they are raising money. Often it's personal and they want to make a difference for someone they care about. Charity is personal, it's about giving somebody that little bit of hope that things will get better with that money. How many of you well up at all the video clips on Children in Need and Comic Relief? Seeing charity offer people a chance.

As I said I am one of those people who is currently relying on charities to offer me some hope. To find answers. So perhaps you can imagine where I'm coming from, when I say don't get swept up in a craze without thinking about the difference people are trying to make. I'm not saying don't do it, post that no make up selfie or throw that bucket of ice water but please do so with a responsibility to the charity. Putting your hand in your pocket, or spreading awareness is much more important. And if you tell your mates how they can help too then even better.

So this does not come from a place of bitterness. I'm not in a tiff, thinking 'this should be to raise awareness for...', or 'such and such is a more worthy cause.' Of course I would love M.E to be recognized on that kind of scale of fundraising campaign. And one day hopefully it will be. Jealousy amongst charities is sad. I simply wanted to point out the nature of charity and how it's something that doesn't deserve to be turned into a dare. So please do the challenge responsibley and mention how you can help. Just in case anyone didn't know, you can donate via text message with the following info, no freezing yourselves is required, unless you really want to.

Text ICED55 followed by £1, £2, £3, £4 or £10 to 70070

Sian

Friday, 22 August 2014

Travel interview with Ali


 Today's post is another interview with one of my spoonie friends, the very lovely Alison, who travelled with her husband and little girl to Palma Nova in Mallorca. I think it's great to get as many perspectives as possible of travelling with a chronic illness and this interview has the added perspective of travelling with a child too.
 
Name: Alison 
Illness: M.E
Destination: Palma Nova, Majorca
Who did you travel with? My husband and my little girl
What airline did you use?
 Jet2.com. We also booked the holiday through them
 
First of all, how was your holiday?
Really nice, the sun always helps my symptoms and it was our 3rd time at the same hotel so I knew everything would be good re accessibility etc.  Was nice spending time with my daughter doing things like finding shells on the beach or being in the pool with her.
 
What was your biggest worry before travelling? And how did you overcome it/ justify it?
I was panicking about how much the travelling was going to wipe me out. I had to try to tell myself it would be worth it & had some tips from friends about how to stay calm!
 
Did you notice any changes in your health whilst away? Good or bad? Any new symptoms?
I always find the sun helps with my pain a bit but then, despite hiring a mobility scooter, I walk about more than I should be doing so end up suffering afterwards.  I always tend to sleep better on holiday which may be down to the sun plus doing too much!!
 
 
How was Palma Nova as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet)
It's a really good resort for wheelchair or mobility scooter users. There are many places to hire disability aids from & it is very flat. The only problem I found was that there were no flat kerbs in some places on either side of road so if you wanted to cross you could get down onto the road but not over again on the other side! Had to try to remember where the sections were that did have flat kerbs on both sides! Otherwise would have to drive on the road which with how they drive over there I didn't fancy!The beach is good as it has a wooden platform with a covered area which you can drive straight onto & leave scooter on (in my case).
 
How did you find attitudes/perceptions towards you by other travellers and from the locals?
Really good mainly. As I am young I am used to getting looks from people when I am in wheelchair or scooter but didn't notice it too much.  People were helpful regarding opening doors & passing me stuff etc if I was on my own.
 
From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers?
Always use special assistance at the airport if travelling by plane.  Makes such a huge difference & makes travelling not seem as daunting or scary.  Also make sure you find out as much as you can about the resort/accommodation & how accessible it is if you use walking/disability aids.
 
What items would you not travel without?
Painkillers!! Heatpads, which I used on my back during journey to help with the pain.  Ear plugs to block out excess noise & eye mask for light sensitivity or for when need rest.
 
What are your favourite holiday beauty products?
Not sure if classed as a beauty product as it's more a necessity but I love Malibu suncream, the smell is yummy! I use anti shine face sheets from e.l.f on an evening, I have to take a few lipsticks & eyeliner, anti frizz hair serum to try to tame the huge holiday hair, I always take some Elizabeth Arden 8 hour cream & will never be without nail polish remover pads & a few polishes!
 
If you were to go on holiday again what would you do differently?
Not panic as much about the travelling as it wasn't anywhere near as bad as I expected!
 
How are you after the holiday?
It took it out of me for a while after getting back.  We had a late flight home plus a horrible experience when the plane was about to land & the landing was aborted due to the weather so that really freaked me out & probably flared my symptoms too.
 
Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?
100%. I would definitely rather have a holiday than not.
 
What are the biggest stresses when it comes to travelling with children when you're chronically ill?
 For me, keeping them safe & making sure they stay with you whilst at airport.  I have always travelled with special assistance so she either walks with us or sits with me on wheelchair. Thinking about all the stuff they will want to do while you're away & knowing you won't be able to is a bit stressful but is more upsetting!
 
Do you have any tips or methods of getting your child more involved with packing etc?
She tried outfits on before we went so she knew what we would be taking & she would be wearing whilst there. She helped fold stuff up & put in case! But other than that, not really. I always pack as much in advance as possible.
 
What are your top tips for keeping them entertained on the journey?
Buy them a kids magazine, they usually come with a gift of some sort & have various puzzles games & stories in.  Colouring pads/pens. I got her a colour your own pencil case in which kept her occupied for ages. And snacks/sweets!
 
 
How do you balance keeping your child entertained and having a good time but also making sure you get the rest you need? Is this something you feel is important to consider when choosing a hotel/ resort?
Make sure you have someone else with you who can do stuff with them!!! ...Our hotel had a children's club which she joined in with a few times but she was quite happy going in the kids pool & we could be at the side to keep an eye on her if didn't want to be in the water.  She was also happy on the beach making sandcastles so I could sit next to her & chill while she did it.  She is 5 so it was much easier than in previous years as she never stayed still! I would preferably opt for a hotel with entertainment so they can join in with kids club in day then disco & games at night rather than try to find things to do with them outside of accommodation.
 
Did you have to make any special arrangements for transfer from the airport to the hotel because you were in a wheelchair? Or did you, or have you ever, encounter any problems about this?
No transfer was (& has been on previous holidays) included in holiday package & they take us on a coach so always room for wheelchair in with the baggage.  If we booked separate flights & ,accommodation though we would have to arrange own transfer.
 
Thank you to Ali for taking part and offering up some insight into what it's like to travel with a child in tow. Although her little girl is angel and very well behaved. You can read more about Ali and how she manages motherhood with a chronic illness over on her blog beingamummywithme.blogspot.com

Wednesday, 20 August 2014

Holiday Lookbook

Hey, just a little post to share some of my holiday outfits. For a woman that's usually in her pj's getting dressed up is a treat and so when I can, I like to make an effort and where better than on holiday. I seem to be going through a floral phase at the moment but that's no bad thing, especially when there are so many gorgeous prints about. I'll leave details of any newer purchases below each photo. Or if you want more info let me know in the comments.

Dress: Forever 21
You can't really see from this photo but it also has a keyhole front.
This dress is gorgeous not ideal for wheelchaira though because it has a slit in both sides making the material likely to catch in your wheels. I had to hold it up.

Jewellery set: Made by me (I did mean to wear them but completely forgot)

Dress: Forever 21
The photo of the necklace shows fabric of the dress
Necklace: Forever 21
Shoes: from holiday
Nails: CG Line (Greek company)

Dress: Primark
Shoes: Tesco
Bracelet: Made it myself


Dress: Induldge
Bracelet: from holiday

Dress: Forever 21

Hat: from holiday
Bikinis tops: Freya Swim and Fantasie
Bikini bottoms: Freya Swim, Fantasie, Primark and Tesco
Headband: Forever 21
Glasses: Ray Ban (from holiday)

Sian
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What's in my holiday make up bag?

The make up bag I've used is from Forever 21. It came with some travel sized make up brushes too and they're super soft and nice to use. You can get it on their website www.forever21.com. They also have a black version.


Starting with the base: 

Clarins Beauty Flash balm
SmashBox Camera Ready bb cream with spf 35 
Max Factor cc cream
QVS Foundation Brush
Rimmel Wake me up Make up concealer in Ivory
Collection blemish perfect concealer
Max Factor under eye concealer
Max Factor pressed powder

I've been using the bb cream during the day as it has spf 35 and I LOVE IT. It's given me that little bit of coverage and rubs in really well. Just rub it in a bit more if you caught your eyebrows as that's the only give away area. I've used it everyday for the past fortnight in 30°c+ temperatures and my face has been really well protected. I have been wearing a hat too so that may have helped a little too but still bigging up this product.

Revlon Highlighting pallete in Rose Glow
Collection Bronze Glow Mosaic in Radiant 2
Seventeen Cheek Stamp Blusher

Eyes:

Elf eye shadow primer in champagne
Barry M precision eye liner pen in black waterproof
Barry M Liquid Liner in turquoise (This was my first time using liquid liners and I found them really easy to use. The turquoise one did end up on my upper lid when I opened my eyes though.) 
Maybelline The Falsies mascara in black water proof
Maybelline New York Master Shape brow pencil in dark blonde



Lips:

Barry M Gelly hi shine lip stain in 2 (red)
Barry M Gelly hi shine lip stain in 3 (pink)
Barry M lipstick in coral


I'm not generally a big make up wearer but have been trying to experiment more lately. Mainly to try and make me look less sick chick and more human. I thought holidays would be ideal opportunity to try out a few new looks. However due to the heat and a sweaty face after a while I soon opted for as minimal make up as possible, for example some cc cream and concealer to even my skin tone or I went bare faced. With having a full fringe that brow pencil didn't even get used. I'll save the experimenting to perking myself up at home. 

Sian

* note some of the products in the photos didn't get included in the end.

Ootd: My travel outfit


Hat: From previous holiday
Cardigan: Primark
Denim shirt: George at Asda
Dress: George at Asda
Shoes: Primark

I chose this outfit to travel in. I chose a maxi dress as I thought it would be perfect for covering my lower legs, the area that get's cold easily but also keep me cool enough on the plane and when we arrived. Also because I had heat rash on my legs so I didn't want to aggravate that. Maxi dresses or skirts are also a great idea if you need to put on flight socks as you can do so easily.

I added some layers as it was an early morning start so would be cool and also because my temperature fluctuates so this gave me a bit more control. I also packed a pashmina in my carry on luggage just in case.

I realise I said about not wearing flip flops or peetoe shoes in my post on the perfect travel outfit. However I really wanted to take these shoes and had little room for them. Plus I avoided the bathroom on the plane. I did regret it slightly when someones case fell over onto my foot whilst being wheeled up the aisle of the plane. I also wore my hat to protect it from getting crushed in my case and it came in handy for protecting my eyes as I was sat by the window.

And of course my trusty wheelchair completes the outfit and allows me to be there in the first place.

Sian

Tuesday, 5 August 2014

Severe M.E awareness day


http://www.mookpixie-infofreak.blogspot.co.uk/2014/08/black-dress-selfie.html?m=1


http://lifeintheslowlanewithme.blogspot.co.uk/2014/08/severe-me-awareness-day.html?m=1

"M.E that's that thing where you get tired isn't it?"

No, no it isn't. M.E is an illness. A neurological illness that has been recognised by the World Health Organization since the 1960's. Yet so many people have never even heard of it. Or if they have it is often false statements like the one above. 

I myself suffer from severe M.E. I have very little independance and am housebound about 90% of the time. Ok I might be writing this post from abroad but I'm writing it from a bed abroad and we come here to try and let the sun do some healing. And although my life has changed beyond recognition I know things could be much worse than they are. 
 
Severe M.E at it's very worst can only really be described as a living hell. Unable to move, almost comatose, not being able to recognize your closest family, being so senisitive to light and sound they cause physical pain, tube fed and catheterized. Being so desperate for release from the constant exhaustion and pain but being told there is no cure, no effective enough treatments only tablets that target pain in different ways. Expected just to accept that that is it and to deal with it.

Now imagine being that ill and the police turning up at your home and forcibly removing you from your sick bed and confining you to a mental health ward. As was the case with Karina Hansen. Read my post on her on the following url (apologies I can't do direct link at the moment)
http://howtodealwithme.blogspot.gr/2014/02/justice-for-karina-hansen.html?m=1

This case highlights just how much more awareness there needs to be of this illness. Recently things are changing somewhat. Most recently there is the story of Jessica Taylor a 23 year old girl with severe M.E who has been ill since the age of 14. Confined to a hospital for years in order to be tube fed. As a result she developed osteoperosis and was at risk of braking a bone if she moved. There has been some hope though for her as finally she has been able to withstand hydrotherapy sessions and developed her muscles enough to be able to lift herself up to sit in bed, to stand with assistance and to walk a couple of steps. You can watch the news article on BBC South East on following the link
https://m.facebook.com/BBCSouthEastToday

It is a positive news story for the awareness of severe M.E as it shows photos of Jess pre M.E contrasted with photos taken whilst she was at her worst. The main highlight of the piece is the fact that it has taken 9 years for her to be able to do these very very basic things again. How often do you sit up in bed and then walk to wherever? You probably don't even give those steps much thought. Now imagine not being able to do that for 9 years. It's pretty well unimagineable. Can you imagine even saying my biggest achievement this year was to walk a couple of steps?

However what is important to remember is that Jess is far from better. She is not cured.There is no cure for M.E. Just because she has taken those few steps doesn't mean that she can now walk everywhere. Taking those steps has caused post exertion malaise and it will take her time to recover before she can try again. She is still having seizures and at times is physically sick. However she is over the moon to be experiencing these 'firsts'. 

One of Jess' biggest achievements though is setting up the charity "share a star" which sends a star and other gifts to seriously ill children and teenagers. Having been in that position she knows the importance of having something to hold on to. You can learn more about the charity on the following link.

Lastly I want to share an awareness campaign that started over on Facebook by Janet Smart. The black dress selfie for Severe M.E Day is representative of those many sufferers suffering alone in the dark. It also represents a mark of respect for Sophia Mirza who died of M.E  after being exposed to mistreatment, that left her even worse. Today (August 8th) would have been her 41st birthday and hence why this date was chosen as an awareness date. The day before her death Sophia's mother promised that her life would be a lesson to others and swore to raise more awareness of severe M.E. Learn more about Sophia and her story on their website.
www.sophiaandme.org.uk

You can read some more about the black dress selfie on Sally's blog at 
http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html?m=1

Details of how you can join in and help us raise awareness are on the following poster. Or simply share or retweet the poster. Or other awareness tweets or posts you see. If you care to share Sally's blog post or my own then please do.

My post is also dedicated to my dear friend Irene who passed away in February after 38 years of suffering with severe M.E. Missing her lots today.

I've included some more blog posts at the start of this posts by Anna and Chatlotte other severe M.E sufferers. Again my apologies for not being able to do direct links. 

Sian