Monday, 11 July 2016

5 things I've learned in 5 years of chronic illness



So last week marked 5 years since my world changed beyond recognition. But rather than crawl up into a ball and blub about it I have decided to try focus on the positives. Because believe it or not there are still positives. I have learned so many lessons in these past 5 years, and got to know so much more about myself as I've faced these challenges. I'm sure I could make a much longer list of things I've learned throughout this experience but these are the ones that I thought of instantly. And in all honestly my cognitive functioning is pretty foggy lately, so I'm lucky I've been able to write a post at all. Anyway here are the 5 lessons I've learned from being chronically ill for 5 years. 

1

You are far stronger than you will ever give yourself credit for

Most of us really don't know how strong we are until being strong is our only option. If you are a regular reader of my blog you will know of my mental health battles prior to becoming chronically ill. Because of that, I fretted so much about how I would cope when I received my M.E and later my fibromyalgia diagnosis. I thought I would probably fall apart. Losing my independence, my career, friends, all I'd trained for. It's true that you will grieve for your former life. But illness is consuming and life becomes about coping with what it throws at you on a daily or hourly basis. Whilst also trying to keep your sanity. And to be fair your pain levels under control.

 There are of course times when you can't hack the pain, when you cry at how the simplest of tasks has left you completely depleted. But on the whole you manage. You just do. One of my favourite quotes I like to use as a kind of mantra when life seems unbearable is: 'On particularly rough days, when I'm sure I can't possibly endure. I like to remind myself that my track record for getting through bad days so far is 100%. And that is pretty good.'

Cope with it one minute at a time and try not to let yourself get too far ahead of yourself, imagining the worst. That only adds more stress to an already stressful situation. Also the odd wobble, sobbing self pity fest is perfectly healthy. Sometimes it takes those moments of grief to actually make us appreciate just how well we're doing.

Source: Pinterest

2

Friendships may come and go but you'll learn who really has your back

This is probably one of the harder things to come to terms with. Especially when you feel you've done nothing wrong, except become ill. Which obviously is not your fault. It can be heartbreaking, because this is a time when you need people on your side. But it's the being on your side part that's important, if they're not making the effort to try find out how you are or have some compassion for what you're going through then it's clear what side they're on.

 It can be really difficult standing up for yourself and cutting a former friend loose. Obviously you then fear having no friends at all and making your world even smaller. So it may take time. But in time you won't miss them.

 I know in some cases friendships have fizzled out due partly to my own doing, and again I don't mean becoming ill. Rather, that illness does change you (and that is probably a whole blog topic on its own) you don't feel part of your old world anymore and as a consequence you can feel that you no longer have anything to contribute to conversation. "So what are you up to?" "Err nothing." And cue awkward pause.

The important thing to remember is the amount of friends you have is nothing in comparison to the quality of friendships. Cherish those that understand that making plans may come with conditions, and you may need to cancel them at the last minute, not because you want to but because you have to. That if you don't reply to a message straight away or read it but don't respond instantly, it does not mean you're being ignorant, or don't care what they have to say. Also remember that whatever people think they know and choose to judge you on, only you have the truth. And that actions speak louder than words.

Most of my friendships now are with people I've got to know through the spoonie community. They're my first port of call when I need help. It's strange because obviously most I've never met, but I don't doubt their friendship any less for that. It's what works for our current situations but it's more than illness that bonds us. I do often laugh out loud at an image in my head, that if I were to get married (to my imaginary boyfriend) of myself and a trail of bridesmaids rolling down the aisle.

3

That smiling and laughter are medicine for the soul

Simple, but true. When you get diagnosed with a chronic illness, as you can imagine, it's disheartening and like I said you do go through a grieving process. You wonder if you'll ever laugh or smile again. But somehow you do and hopefully you will smile or laugh at least once a day. My not so secret, secret is to focus on the little things. The fact you've took less pain medication today, you've seen the cutest meme on Instagram. Eat something yummy. Have a mini pamper session. Or put on your favourite TV show or film, even though you've seen it a thousand times but you know it will make you laugh. I've got to the point where if ever I need both my parents to help hold me up and support me to walk I start singing 'let's all do the conga,' because I'd rather laugh and smile at how grateful I am to have such supportive parents, than think this is so depressing.

I already have some blog posts on happiness, in particular my 'happiness is...' series if you would like some ideas. I hope to continue writing more on happiness, confidence and self worth soon.

Source: Pinterest

4

To grab opportunities and have adventures

Obviously this is something that is subjective to each sufferer because no 2 are alike and we are all affected differently or have differing life situations. It's true though that we all must learn to see that achievements are not just life's big milestones, but the milestones you achieve with your health. Getting downstairs for the first time in months, being able to concentrate enough to read a book, walking into a restaurant rather than have to be wheeled. These are no less worthy achievements.

My own personal experiences have shown me that every now and again if an opportunity comes along and I feel I could scrape by then I go for it. So far I am lucky enough that that has included some holidays and even an amazing experience of being in the studio audience of Strictly. You can read about these experiences here on my blog.

 Yes, there's a lot of planning involved and usually smiling through extreme pain. As well as the agony of payback in the form of post exertion malaise. But making new happy memories that you can look back on with fondness, will help you to cope on those bed bound days. There is no such thing as a break from chronic illness but every once in a while you can try divert your attention. Within your limits of course. Life is far from over. It's about learning to live in the moment, taking advantage of your better days. And ultimately, knowing that because there is no cure, that you cannot delay your chance at happiness, you must grab it as it happens. You can't put off being happy until you are better. You will only rob yourself in doing so.

5

That you will have a whole new self respect for your body

You'll learn to read it and continually self assess. As well as a whole improved view on body image, because you are no longer as wrapped up in what your body looks like and hating on it. But rather what it can do and how much it puts up with. You are now so grateful for it for surviving through years of pain and for the times it allows you to have little adventures. It deserves your love and respect not hate and disdain. As ever self care and having a healthy relationship with your body is about what you put into your body, as well as being careful how you treat yourself physically and mentally. Your body and you yourself are doing the best you can within these circumstances, so treat yourself with care and respect.


As I'm feeling generous and I believe it needs saying, I'm throwing in a 6th nugget of wisdom. And that is: Healing and recovery are not linear. There will be peaks and troughs, better times and worse times. Times you cope better mentally than others. Set backs and relapses. So, never beat yourself up that you are not progressing as quickly as you would like. That you could do something one day but not the next. Remember illness, especially where PEM is involved, doesn't work like that. Never, look at everyone else's achievements and feel inferior, because they are making their own path not yours. Rest when you need to rest, cry when you need to cry and move at your own pace. Celebrate each achievement and give yourself lots of credit and praise for them, because it's you that's doing all the hard work. And yes, putting up with a chronic illness certainly is hard work.

What are the biggest things that you have learnt from becoming chronically ill? Let me know in the comments.

Until next time
Sian
X

Friday, 17 June 2016

It's not always ME



I have seen many a tweet or post from people with M.E and other chronic illnesses about doctors lack of understanding and 'horror stories' about appointments and hospital visits. And I'll be honest, for a while I gave these posts too much head space. I started to believe that I simply must suffer in silence and accept that my health was getting worse and that no one could do anything.

Until one day when even breathing felt like too much hard work I declared that this was madness. Because if someone that was otherwise healthy felt half this bad they'd be calling an ambulance or at the very least seeing their GP. Yet because I have a chronic illness and think I know what is going on I simply have to put up with it and keep quiet. Well I wasn't having that! It occurred to me how ridiculous it was to be suffering so much yet my GP obviously had no idea how bad things had got. And if I didn't tell them, how could they know? 

What was more ridiculous is the fact that I've always had good experiences with my GP's, they diagnosed me early, have made referrals to OT, home visits and helped me find a good balance of medication. I've not had the bad experiences others write about and fear will happen again.

The thing is though regardless of your medical history we all need medical attention from time to time. Whether it's to simply review medication or make referrals because our illness is becoming more severe. We cannot do what I've actually seen some suggest in keeping clear of doctors. This is not to say we should accept poor treatment. Far from it. There are good doctors out there that do understand M.E, it's a matter of finding them. They're the ones we should be taking advice from, not some naysayers on the internet. It must be so hard on them too, to see so many patients asking for help but the science and research is so far not progressive enough to help them. When all they can do is help keep us 'comfortable,' try to manage our symptoms and rule out other things.

Because that is another reason why seeking medical attention can be so important.  Sometimes it's not going to be 'just M.E' 'just fibromyalgia' or 'just IBS', etc etc. I think many people avoid getting help because they feel they'll be told it's just (insert known diagnosis). To be fair in some cases it will be. Or you will be sent for some standard blood tests or an ECG etc only for them to come back 'normal'. It can be disheartening, believe me I know how it feels, especially when you feel so far from normal. You just want answers. Or something with a quick/easy fix.

However, when it comes down to it this is also the best we can hope for. We already know we have that condition and probably have built up a wealth of knowledge and coping mechanisms to help. We also know recovery is an ongoing process filled with peaks and troughs. Having recently been on the other side, where test results came completely out the blue and needed looking into urgently, I can tell you being on that side of the fence is certainly not the better option. So my opinion on negative results has certainly become more 'phew what a relief.' Hopefully, I'm doing okay though.

Sometimes we might even get some answers that can be more easily solved, our iron or vitamin D levels might have dropped, which can be fairly common if we are housebound and not getting all the nutrients we need for whatever reason. So a short course of them can help us get back on track.

Then of course, like I said there are the times when it's not going to be just M.E etc. And obviously we can't know this until it's confirmed. But what I feel it's important to say is, we are not immune to other illnesses, chronic or short term. From common coexisting conditions such as many M.E sufferers also being diagnosed with fibromyalgia or POTS to infections, lumps and bumps and even mental health problems. Or heaven forbid breaking a bone or muscle damage, which when you think about how drained and weak we can be could easily be a possibility after a fall.

Which is why I totally rolled my eyes when I saw a post about the junior doctors strike making no difference to those of us with M.E because the NHS can't do anything for us. If only having M.E made us exempt from accidents or other illnesses. Sadly it doesn't. Of course in those situations we cannot always guarantee we will see a doctor or nurse that will also understand M.E or other condition, but in those instances we just have to remember that we know better and we're there for another reason.

This is why it's so important to be self aware and know what is normal for you. And that includes self examination of your bits and bobs too. I have a blog post explaining how to do this for women here and for men here. I think as long term sufferers we're pretty good at being self aware, because we are constantly self evaluating and assessing. Judging how many spoons we might have. Do we have enough to have a shower? Knowing when we need to stop and rest. The effects of PEM on your body and how it will differ from activity to activity. The difference between PEM and a relapse. The difference between a flare in M.E symptoms or a flare in fibromyalgia symptoms. You become an expert in you.

However of course there are going to be times when things feel brand new and out of the ordinary. Symptoms you may never have experienced. Symptoms that scare you, such as paralysis or feeling completely trapped in your body unable to communicate. And when you are treading that line between is this just another M.E etc symptom or something else, isn't it best to be on the safe side? Wouldn't you rather know for sure that it's nothing else on top of everything else?

Not long ago after I had been in a neurological hospital for a week I began to experience a dragging sensation in my face and my speech began to slur with it. It was something I've never experienced before and with this being a key symptom of a stroke you can bet I was spooked. And so even though I was struggling with PEM, I knew I had to get it checked out. Luckily it wasn't a stroke and thank goodness for that. It turns out it was a new PEM symptom, a reaction (or overreaction) of my diva body to having been in hospital for a week and only getting 10 hours sleep in that time, when usually that's what it needs a day. Did I feel better for knowing I wasn't having a stroke? Yes, of course. Did my doctor feel I'd wasted their time? No, they were concerned too and checked me over and spent ages on the phone to my team at the neurology hospital.

Sometimes, even though we're self aware we can also not pick up on some things because we're also so used to being in pain or other symptoms. These might mask other things that might be going on. I know someone that didn't pick up on a kidney infection until they almost got sepsis, which sadly could have been fatal, because back pain and fevers were common when they were flaring.

So my point with this blog post is, be vigilant with your health. Know what's normal for you and what isn't. And if you think something is amiss find out for sure. I know it's hard when you already feel so awful but you need to be safe. Find a good doctor and never think that you have to put up with bad treatment or poor opinion. Move on from them and block out their unhelpful comments. You know yourself and you know you are far from a lazy malingerer or hypochondriac. Because you really do need someone in your corner. I disagree that we do not need them because we all need medical care, whether it is for our chronic illness or for anything else that might come your way. Remember we can't get help if we don't at least ask. Don't suffer in silence. This is all part of treating yourself with love and respect, of wanting the best for yourself.

If anyone knows of a good resource for finding an understanding GP or medical professional please do share.

Take care everyone

Siân
X

Tuesday, 12 April 2016

Make way, make way for Team Princess 2016


We're back!! And ready (as we can be) to take on M.E awareness day 2016 (Thursday May 12th) and build on the amazing achievements of the past two years. Team Princess have raised over £10,000 for M.E charities in the UK and Australia through our The Princesses and M.E events. That has gone towards funding biomedical research, drug trials and all the great services these charities offer to help support sufferers and their families. As well as helped to raise awareness for this much misunderstood illness.

Firstly who are Team Princess and what is The Princesses and M.E event?

Team Princess are a group of M.E sufferers and supporters that become Princesses for the day on M.E awareness day to raise awareness and fundraise for M.E charities. Individually each Princess is admirable, courageous, strong and brave. Even though they might not think so themselves. Facing adversity with optimism. As a group we're a sisterhood (including the men) that want the best for one another. Getting each other through the worst days and cheering for them on their achievements.

The Princesses and M.E event is held on May 12th, where members of Team Princess become Princesses and share photos to social media using the hashtags #teamprincess and #theprincessesandME. All in the name of raising awareness and raising money to help give sufferers support and hope. More details on how you can take part this year are below.

When I first had the idea I wanted to not only fundraise and raise awareness but also celebrate some of the fantastic people that I had got to know that shared a diagnosis and soon became friends. People who left me in awe of their determination, their strength, positivity in the face of adversity and their kindness. They were princesses in my eyes.

But I think the word Princess can conjure up images of diva strops (that's the illness not us), of being delicate, fragile and girly. That they are helpless and in need of rescuing, whisked off into the sunset to live a fairytale life. Yes at times we are helpless and feel no one can offer any genuine help, until rescue comes in the shape of a cure or at least effective treatment that allows us to regain a life we can only dream of. But what I see is far from fragile, helpless and hope-less, I see strong people facing adversity with courage and even humour. They're the kind of people that you want to learn from and get to know more. They're Princesses.

This year we want to ensure that that message doesn't get lost. That people don't just look at the photos and think "oh how pretty you look as a Princess." But see the reasons why you are a Princess and that for all you cope with you more than deserve to be a Princess for a day.

So on Thursday May 12th if you wish to join Team Princess and our The Princesses and M.E event what you need to do is:

1) Get in touch and let us know you'd like to take part. Either comment here, Facebook, Twitter or Instagram. Links to which are at the end of this post.

2) Set up a justgiving or btmydonate if you wish to set up an individual fundraising page. This is not compulsory and because many sufferers are too unwell to set up their own fundraising pages and keep up with them group fundraising pages for a number of charities have already been set up, to make things even easier should you wish to help Team Princess' fundraising campaign. You can simply share the links,(please note not all event pages for btmydonate have been set up yet but will be added as soon as possible). Here are the links (simply click on the page to go to the page):

Justgivng
Justgiving Team Page
Association for Young People with M.E
Action for ME
ME Association
Invest in ME
ReMEmber
ME Research UK

BT mydonate
Smile for ME
Hope 4 ME and Fibro Northern Ireland
Tymes Trust


I've included more details about our fundraising campaign below. And a guide on how to set up an individual page is available here http://howtodealwithme.blogspot.com/2016/04/how-to-set-up-individual-fundraising.html

3) On May 12th dress up as a Princess. Dress up as much or as little as you like, or are able too. Over the years we have had full costumes, rewearing of wedding dresses, wearing a gorgeous dress you already have, Kate Middleton fashion inspiration, pyjama princesses or simply wearing a crown/ tiara. And let's not forget our men in their full Princess attire. Remember to put your health first and if you are too unwell to dress up on that date then of course you can choose another date should you wish or prepare your photos in advance. The point is you're a Princess regardless of what you are wearing. It's not a competition. Even if you simply use an app on your phone like snapchat or pic collage to add a crown it will still help make a difference. And any men that wish to take part but don't want to dress up as a Princess then being a Prince is great too.

4) On Thursday May 12th (or another date if you are too unwell) share a photo of yourself as a Princess to social media and use the hashtags #teamprincess and #theprincessesandme Be sure to post to our Facebook page too.

3) Alongside your photos write: "Today is M.E awareness day and to help raise awareness I've joined Team Princess. I'm a Princess because..."

Post about the characteristics you share with well known Princesses. Who if you look beyond the girliness you'll find stories of bravery, courage and fighting for what they believe in. Qualities that show you're strength and even your sense of humour. Here are some examples:

I ride around in a carriage/ noble steed. Also known as my wheelchair.

I'm in search of a fairytale.

 I feel like I could sleep for 100 years.

Just like the Princess and the pea the slightest discomfort means a restless night.

Because I have help to do chores and put on my shoes. Sadly unlike Snow White and Cinderella the animals have not been very cooperative to training.

Like Ariel I can't walk on land and want to be where the people are.

Like Belle you want adventure in the big wide somewhere.

Because I have been locked away from the world but never gave up on hope that one day things will change.

I long for the day a fairy godmother will arrive and tell me there's a cure.

Like Cinders staying out past midnight leaves you worse for wear.

Brainfog means that just like Cinders we're likely to leave things behind.

One of the quotes you try to live by is 'have courage and be kind.'

Because I am brave and face the beast that is M.E each day. And just like Belle as each day passes I am learning to tame the beast and find the beauty that life still has to offer.

Being brave enough to try to change your fate like Merida.

You're a warrior, like Xena or Mulan, but battling against chronic illness.

Like Kate and Diana I champion a cause and campaign for change.

5) End your post with: "Myself and thousands more are desperately hoping for a fairytale, for a magic potion that will help treat and cure this villain of an illness. You can help us achieve that by helping us raise awareness and donating at..."

5) Link to either the teams fundraising pages or your own fundraising page.

And that's all you need to do to be a member of Team Princess. We'll be sure to share your photos across our social media too, to help raise awareness and ensure they reach as wide an audience as possible. If you don't want your photo on a certain social media then please let us know.


Once again this year we want to support the cause as a whole which means supporting and helping as many M.E charities as possible. Here in the UK fundraising pages are set up on justgiving for Action for ME, Invest in ME, ME Association, Association for Young People with ME, reMEmber, ME Research UK and on btmydonate for Smile for ME, Hope 4 ME and Fibro Northern Ireland and Tymes Trust. These will be group pages and be open from April 12th.

 You are also welcome to set up your own fundraising page, should you wish to do so, which can be linked to the overall team page on justgiving so that we can keep track of our overall total. Having your own page will be best if you plan to sell or giveaway items in return for donations. If you plan to do this or hold an auction please let us know in advance as there are rules and regulations that need to be put in place which you will need to be made aware of before setting up your page. Also please note that no online raffles can be held due to licencing laws.

 Princesses that wish to set up their own fundraising pages are free to choose which charity they would like to support. We also ask that you respect individual members of Team Princess' choice of charity if they decide to set up a personal fundraising page and understand that their decision is based on their personal experience with that charity and the way they have helped them to cope with their diagnosis. However by being a member of Team Princess you are also supporting the cause as a whole, promoting unity and wanting to help as many charities that do so much for us.

Princesses in other countries that wish to take part please get in touch and we can look into how we can help charities in your country too. We'd love to reach as many charities as possible to help sufferers worldwide.

We'll also be supporting a lovely organization ran by an M.E sufferer called Spoonie Survival Kits, which sends survival kits to help brighten a sufferer in needs day. Money will be raised for these through auctioning an item for each charity/ organization, which will be held on our Facebook page www.facebook.com/MEprincesses. Dates for this auction are still to be confirmed.


As recently announced Amanda Carroll's beautiful paintings, as seen above, will also be auctioned on our Facebook page on the weekend of 21/22 of May. Amanda wishes to raise money for the ME Association. Full terms and conditions for the auction will be available to view on our Facebook page.

But wait there is even more information and plans! In the spirit of wanting to create a postive atmosphere and celebrate the kind, generous pillars of strength many sufferers are, the ones we see as real princesses who help get us through the worst days, throughout May we're going to be holding giveaways. Where each week you will be able to nominate a friend(s) (that has M.E) that you think is a Princess and share the love by stating the reasons why you think they're such a good friend/ princess. Each nomination will then be entered into a draw to decide the winner.

There will be four giveaways in total; one on our facebook page, one on instagram, one that is eligible for international (outside the UK) entries and one in which we celebrate our wonderful carers who take so much care of us. The first giveaway, which will be on our facebook page, will start on Wednesday April 27th and they'll be drawn every Wednesday. The rules for each giveaway will be clearly stated with each giveaway announcement. It's so exciting to think about making people feel special and to be giving away prizes that will help brighten someones day.

Finally watch out for our promotional posters and please retweet/ repost/ share them to help spread our message and raise as much awareness as possible.

On our social media accounts we'll also be trying to create a positive space. M.E awareness week can be quite tough for sufferers. As much as it's amazing to see M.E being mentioned so much and people using what limited energy they have to help raise awareness, it can also hard to see so many posts on your social media feeds. It can be very in your face, a stark reminder of reality and all the adversity; that life has not gone to plan. Because as sufferers we know full well the suffering and devastation this illness can cause. It's almost like rubbing salt in the wound. As mentioned it's difficult because awareness needs to happen to reach people outside of the community but if you are in that community it can stir up a plethora of emotions. So we want to create a little bit of a sanctuary. A place you can reflect on personal achievements and strengths. How you've learned to keep a smile on your face. And a place to celebrate others achievements and give them the support and kindness they need.

We're very excited about this years campaign and cannot wait to see how much of an impact we can make this year. 

Keep up to date with all things Princess on our social media:
Twitter: @teamprincess4ME
Instagram: @teamprincessofficial

Thank you for reading, and taking the time to learn more about Team Princess.

Queenie
xx

How to set up an individual fundraising page

As many sufferers are too unwell to set up their own fundraising pages and keep up with them group fundraising pages for a number of charities have already been set up, to make things even easier should you wish to help Team Princess' fundraising campaign. You can simply share the links, which you can find here, (please note not all event pages for btmydonate aren't set up yet but will be as soon as possible:

Justgiving
Justgiving team page
Action for ME
ME Association
Invest in ME
ME Research UK
ReMEmber
AYME

BT mydonate
Smile for ME event page

However here are the details of how to set up your justgiving and btmydonate page should you wish to set up an individual fundraising page for a charity of your choosing as part of The Princesses and M.E event.

Justgiving

Most the stages can be completed via the mobile version of the website, however to personalise your page, you may want to switch to the full site for ease of use, as pointed out in the steps below. If you are on your mobile simply click use visit full site at the bottom of the home page.

1) Go to www.justgiving.com and click get started. You will then be prompted to log in if you already have a just giving account, or you can create a new account. Alternatively you can sign in via facebook or download the free justgiving app. If you are already logged in click start fundraising.

2) Click the fundraising for a charity option.

3) In the search bar type in the name of the charity you wish to support and press select. Remember you can choose from:

ME Association
Invest in ME
ME Research UK
AYME
ReMEmber ME
Action for ME

4) On the next page select the taking part in an organised event option.

5) Even though I've already put in the event it doesn't come up as an option if you search so you need to click add your own.

6) On the next page, where it says tell us about your event, in the it's a... drop down box select other.

7) called... type The Princesses and M.E/ Team Princess.

8) starts on 12th May 2016
     ends on 12th May 2016

9) Choose a web address for your page for example justgiving.com/princesssian

10) Answer yes or no to the questions

If you are planning to make items to be sold in return for donations you will need to answer yes. Or if you are planning to auction anything please let us know in advance as there are rules and regulations and terms and conditions have to be put in place. Please note that online raffles are not allowed due to licencing laws.

11) Check or uncheck the contact options

12) Press create your page.

13) Now your page is created you can personalise it. If you are having problems saving the information using the mobile site, switch to the full site.

14) Add a photo of yourself or you can use the Team Princess logo.

15) Where it says tell us what you are doing write becoming a princess for M.E awareness day... because I want to make a difference.

16)  If you wish to set a fundraising goal amount you can, remember though every penny is great and not to put too much pressure on yourself.

17) Tell your supporters your story. You can copy the following (forewarning copy and paste doesn't seem to work as I found out creating 7 pages!) :

Non sufferers will need to adapt the wording to suit them. Also adapt to make it more personalised should you wish.

As some of you will know I suffer from a chronic illness called M.E a neurological illness that has dramatically changed my life.

This year I am joining Team Princess and taking part in The Princesses and M.E event, a group of M.E patients and supporters that are becoming Princesses on May 12th. In the hope of raising awareness of M.E and fundraise for the charities that do such a great job in supporting patients and those close to them.

Our ultimate fairy tale would be finding a cure for this villain of an illness that has locked us away from the world. Or even a magic potion that was an effective treatment. That would be an absolute dream come true.

You can find out more about Team Princess on our facebook page www.facebook.com/meprincesses

18) Say which charity you have chosen and why?

 19) You can personalise your page even more by adding more photos, videos, updates and even choose a colour scheme for your page.

20) You can also personalise the message that donors receive when they make a donation, thanking them for their generosity.

21) To make it even easier for people to donate you can also set up a text code. Learn more about how to do that here.

22) Link your page to our team page, so we can keep track of our overall total. Our team page is www.justgiving.com/teams/teamprincess2016 Simply visit the page and click on join the team.

BT mydonate

Donations can be made directly to Team Princess on the event page but if you want you can set up your own fundraising page. Just a note at the time this post is published all the event pages might not be set up as the charities might not have set it up as yet.

1) Go directly to the event page and press start fundraising.

2) Page title- for example Princess Ali's fundraising page

3) Page summary- My fundraising page for The Princesses and M.E event, which aims to raise awareness of M.E and fundraise by becoming Princesses for the day.

4) About you- share your story and why you have joined Team Princess. As well as why you have chosen this charity.

5) Enter a target if you wish to set a fundraising goal, remember though every penny is great and not to put too much pressure on yourself.

6) Upload a photo of yourself or the Team Princess logo.

7) Upload a banner image. This could be the Team Princess logo.

8) Upload any additional photos you wish to use.

9) Create a web address for your page for example https://mydonate.bt.com/fundraisers/princessali

10) Answer yes or no to the questions. Please note there is no team page for Team Princess on btmydonate.

11) Select if you would like updates from your charity and when you would like to be notified of activity to your page.

12) Write a personal message that donors will receive when they make a donation.

13) Select create your page.

And it's as simple as that!

Good luck with your fundraising.

Queenie
xx

Sunday, 31 January 2016

Spoonie Travel Interview with Anna

Malaga
photo by Anna Jones



Illness/ disability: ME/ CFS
Destination: Malaga, Costa del sol, Spain

Who did you travel with? 
My boyfriend, Mr Tree Surgeon

What airline did you use?
British Airways

First of all, how was your holiday?
Wonderful thank you!


What was your biggest worry before travelling? And how did you overcome it/ justify it?
Where do I begin?! It was the first time I had travelled abroad since becoming ill. I had no idea how I would cope with getting through an airport or enduring a flight. I asked my fellow sufferers who had already attempted foreign holidays what to expect and tried to keep an open, calm mind.

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, encountered any problems about this?
We stayed in an apartment and had contacted the host prior to our arrival about the best way to get across the city from the airport. We considered hiring a car but parking was restricted so we got a taxi from the taxi stand at the airport. The wheelchair posed no problems – although trying to give directions to a driver who didn’t speak English did!!!


Did you notice any changes in your health whilst away? Good or bad? Any new symptoms?
Nothing out of the ordinary or that wasn’t expected. I struggled with the warmer days as I have problems with temperature regulation. I initially struggled a little with the time difference, even though it’s only an hour. Sadly, but not surprisingly, I didn’t get the remission that some people had mentioned they’d had while they were abroad.

How was Malaga as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet)
Really, really impressive! Even the beaches were wheelchair accessible. A lot of the city was pedestrianised and there were pelican crossings almost everywhere. In 10 days we only had one problem with a drop kerb which is so much better than our experience of the UK. The apartment was in a quiet residential area away from the tourist district and the city centre. The only down side was that it was up a hill. On the one day I tried to stretch my legs I managed to get down the hill but then couldn’t get back up it! There were beaches and restaurants right on our doorstep and everything was in walking/wheeling distance.


How did you find attitudes/perceptions towards you by other travellers and from the locals?
Surprisingly the most negative attitudes belonged to the staff at Gatwick Airport, particularly those of the security staff and the Special Assistance Team. We were shocked by their distinct lack of compassion and care. If I handed over our passports and boarding cards, they were handed back to Mr Tree Surgeon and I was completely ignored.
In comparison I was treated like royalty by the staff at Malaga Airport. All of the restaurant staff and locals that we came across were incredibly accommodating of the wheelchair and I was made to feel like an equal for the whole holiday – something that doesn’t always happen. They took it all in their stride. I took a tumble out of the wheelchair on the way back home and a local couple came to help. There was building work on our road and we had to pass a skip that was right up against the wall, the builders helped Mr Tree Surgeon carry our shopping and the wheelchair while I shuffled past. It was really lovely.

From your experience(s) what piece(s) of advice would you pass on to other spoonie/disabled travellers?

Accept any help offered if it will mean you can save your precious energy for the actual event. You cannot be too organised. That said, there comes a time where you just have to stop or you’ll worry yourself silly. I had to zip my suitcase up to stop myself from panicking about what I had or hadn’t packed. Lists are amazing! Write down the essentials like medication and tick them off as you go. With memory problems it helped enormously.

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?
Most definitely

View from my bed
photo by Anna Jones

What items would you not travel without?
Ear defenders!!!


What are your must have items for in your hand luggage?
Rescue Remedy sweets to suck on – you obviously have to be careful with the liquid form. A woolly hat. A book. My iPhone. My prescription medication. Spare pants and socks, and a toothbrush, in case my luggage gets lost.


What other disability/illness related essentials do you pack?
A hot water bottle and disposable ice packs would have been good but I ran out of space. I’ll definitely pack them next time.


What are your favourite holiday beauty products?
I’m not really one for beauty products but I do love Rimmel’s Wake Me Up concealer after reading one of your blog posts. It definitely helped cover the dark circles under my eyes after a day of travelling.


If you were to go on holiday again what would you do differently?
Next time I’m sure I would be far less worried because I now know what to expect. I would pack more dresses to go over leggings as they proved to be the most comfortable outfits for sitting in the wheelchair in the ‘heat.’ Even jeggings became uncomfortable after awhile.


How are you after the holiday?
Not too bad! Well…you know how it is. Payback and post-exertional malaise. We were very sensible and had slow, lazy mornings each day so as not to push my body to do more than it could to soon. We did get into the holiday spirit and I did more than I would do at home but using the wheelchair saved so much energy! I made it out, at least for coffee, most days – which was incredible! Maybe I should brave using my chair more often at home…


Did your experiences make you want to travel again? If yes where would you like to go?
Yes. I was reminded though that I don’t manage so well in the heat – and it was only 22 degrees celsius! And we’ve had so many lovely holidays around the UK that I don’t feel desperate to get back on a plane. Having glorious sunshine everyday was fantastic though!

A very big thank you to Anna for taking part. And I hope her experience has given you some confidence about travelling or an idea of where might be good to go. It's certainly made me long for some winter sun. You can read more about Anna's trip as well as her other great blogposts over on her blog ME, myself and I lifeintheslowlanewithme.blogspot.com

Also some exciting news I'm currently working on a travelling with a chronic illness article to be featured in a book all about living well with a chronic illness by the amazing lady behind www.pajamadaze.com. Which will also feature an article by Anna. 

Sian x