Posted by: Claire | June 25, 2012
The night before my trip to Sandringham I was so excited I couldn’t sleep! I was like a kid before Christmas. I knew I had to get some sleep before the big day; but my brain was going ten to the dozen with thoughts like “what am I supposed to do if we meet her? What do I say? Do I have to curtsey? That might be hard in a wheelchair! A bob then, maybe a mini bow? And is it ma’am like ham or like jam?” That doesn’t even cover the other fears of will I be okay with the travel, will I be tired when I get there? How will my ME be? Oh the joys of living with a relapsing chronic illness! I would not let it bring me down though, so I did my best to relax and finally fell asleep, waking to the annoying sound of my alarm.
I had an early start because I had booked to have my hair put up. I have the most amazing hairdresser who can do wonders with my hair – my expertise runs to ponytails and the odd bun! She worked her magic and ta-dah!
Now came the final decision on the dress, I couldn’t put it off any longer! It had been a grey day when I woke up; but it wasn’t raining. The blue dress seemed sensible; but the purple dress was calling to me! So I was a complete girl and chose pretty over practical!
All dressed up and Google map in hand we piled into the car and set off! We chose the alleged fastest route and found every road that was being resurfaced in Norfolk! We also trailed behind tractors and slow moving vans. Fortunately we had left early!
As we approached the first signs for Sandringham, I looked up at the sky and saw one blue swathe of sky right over the estate! I let out a cheer!
We slowly made our way to the disabled parking and Mum put up my wheelchair. For anyone that has pushed or been in a wheelchair over rough grass you’ll know it’s not a pleasant experience; but we managed and were pleased to get to the smooth path. We went past the church that you see on TV that the Royals go to at Christmas!
We went through security, handing in our invitation cards and then made our way in, past the official photographer! N.B. if anyone knows how to get copies do let me know!
The gardens were beautiful, the sun was out and everywhere you looked there were women in beautiful dresses and hats, with men in smart suits. I think one of the best bits was people watching! I saw a few people in the same dress! I also got very good at guessing if a suit was off the rack or tailored! There were some gorgeous outfits and thankfully I didn’t see anyone in my dress!
There was about forty five minutes until tea was served and then there was a bit of a rush to the tea tents to get the food. Fortunately we had taken up a place near the entrance so we were in fairly early. The food looked amazing! Miniature sandwiches: cucumber, ham and mustard and egg, smoked salmon bagels, cut into tiny triangles, cheese straws, mini cakes – all British classics: Victoria Sandwich, scones with cream and strawberry, chocolate tarts and macaroons in red, white and blue! Tea, iced coffee or apple juice to drink. All the food was made by local colleges with local ingredients.
It was a bit if a task to load the small rectangular plates, while Mum pushed me, wanting to get a selection; but not look too greedy! The plates had little indents for your cup or glass; but fortunately they carried out our drinks (Mum had tea, I had juice) we then sat/stood in the sun and enjoyed our food. It was delicious! Really yummy and perfectly bite size. My favourites were the salmon bagel – I don’t normally even like smoked salmon! And the Victoria sandwich which had a fresh raspberry coulis and was dreamy! Some people went back for seconds; but we resisted!
We moved onto the main grass as we saw people gathering round the entrance to Sandringham Hall – which is incredibly beautiful and dramatic! I saw the Union Jack flag had been changed to the Royal Standard which meant the Queen had arrived and was in residence! Then there was a buzz of excitement and I could just make out a pretty orange hat pass between the crowd. We didn’t get close to the Queen; but it felt enough to be close. I actually felt a bit sorry for her because people were pushing to the front and gawking a bit!
We then had a wander around the garden which is beautiful! Very English country garden, as you would expect. I could imagine that it would be an amazing place to have a picnic, with lots of little hidden areas you could disappear into for a great game of hide and seek!
We emerged just before the band were set to play and took our places near the Hall, on the West Terrace. Turns out we had the best location, with a view diagonally across to the Royal tent. We saw the Royal party enter the tent and then sit down to watch the show. We were only about 20 metres away from the Queen! She was petite; but looked very stylish and very happy to be there. Prince Phillip was ill and unable to join her; but Prince Andrew, the Duke of York, was there instead. I even saw them bring out a blanket to put on the Queen’s lap to keep her warm – I was a little envious as despite the sun it was very cold in the wind.
The marching band began and they passed back and forth right in front of us, so close I was worried they might trip over my wheelchair foot rests. The music was loud and strident, I could feel the air vibrate with the beat of the drum and the notes of the brassband. It was incredibly absorbing, I got lost in the music, forgetting where I was, or who was sitting so near to me! I had this feeling like this must be what it’s like to be in your own movie with a soundtrack playing behind you during your big moments. It was magical!
The musicians deserve incredible respect – I learnt to play the flute at school and that was a challege standing still; but doing it while marching up and down, keeping time, not bumping into each other and turning your own music cards over is skill at its finest! I was seriously impressed!
The afternoon ended witha speech and then the Queen went inside – she was even closer then, I could see her through the window, she was about six metres away! People crowded to the window, so we made our way back to the car, escorted by the sounds of a bagpipe, coming from high up on a balcony above us. It was haunting and beautiful. The perfect end to the perfect day!
Posted by: Claire | June 15, 2012
The big question – what on Earth do you wear to the Queen’s Garden Party? What do you choose? Do you go long or short? A bright colour or something pale and demure? One thing was certain, you have to get a new outfit, because if you can’t treat yourself to a new dress when you go to visit the Queen, then when can you?
The invitation had a dress code. It said Ladies – Daydress, hats optional. So began my hunt for a dress. I wanted something beautiful, classic, elegant. I wanted a dress that would look great, feel comfortable, be suitable for wearing in my wheelchair and that I could wear again.
First stop was to a local boutique, were I found this gold dress, which I liked; but didn’t love. Temptation was to get it in case I couldn’t find anything else; but I resisted!
Then Mum and I paid a visit to John Lewis, where I tried lotws of different dresses on; but none were right. The long ones had too much ,aterial that would get caught in my wheelchair or dragged on the ground. The short ones were not my style and the others made me feel like the Mother of the Bride. I did love this dress; but it was just too old for me. (Good job as I saw three different people in this at the party!) So the search continued!
I was getting a little desperate; but then we went to TK Maxx on the off chance of finding something special and I saw a couple of dresses that I really liked. One that was in my size that I liked; but the one I really loved was too small and the only one they had 
I decided to do a search online and managed to find the next size up from an e-bay seller in America, so I contacted her and begged her to send it to the UK, which she did; but I wasn’t sure it would arrive in time, so I thought I should look for a back-up, just in case!
I felt I needed some help with choosing the dress, so I had a free session with a stylist at the local shopping centre. The woman was incredible, she did my colours and advised me on the right styles for me, so I knew what clothes I should be looking for. I tried on about five different dresses, loved three of them and decided to get one – a gorgeous purple dress, really classic and I felt amazing in it. It’s the first “grown up” dress I think I’ve ever had!
I even found some shoes and a shrug to go with it! The shoes are pretty high; but that is the one good thing about being in a wheelchair, I don’t have to worry about walking in them!
A friend had also suggested I go to Debenhams and have a session with a personal shopper, something that I have always wanted to do, so I’d booked it for a couple of days after my style session, in case I didn’t find anything. Despite getting my dress, I didn’t want to cancel it as it sounded like fun, so we went along and it was great.
We were in a private room, with comfy chairs and a little changing area. We were served drinks and the personal shoppers brought me lots of different outfits to try on, most I would never have even thought about looking at. I found one blue dress with a matching jacket which was a bit warmer than the purple dress and looked like it might do better in the rain – we’ve been having heavy down pours for the past six weeks, so rain is a definite possibility – I bought a see-through butterfly umbrella just in case, eventhough it’s June! In fact they even advise taking an umbrella on the invitation!
I technically didn’t need another dress; but this one looked like I could wear it for other events and networking dos (it looks nicer than in this picture!). I also felt it was my safety net, if I planned for rain, like with the umbrella, I could trick the sun into coming out!
Finally I was all sorted and keeping away from any clothes shops or websites so I couldn’t be tempted again! Then my dress from America arrived! I had been worried that it would still be too small; but I knew it came with a gorgeous shrug and matching belt, so I thought that at least I could wear those with other things, so not the end of the world. When I tried it on I had an Eeeek moment! I realised that I had got a US size, not a UK size, so it was several sizes too big and looked awful, like I was wearing a tent!Even the shrug drowned me! I could have cried, in fact I very nearly did!
Fortunately we know a seamstress who took it in for me, two days before the garden party – big relief!
On the upside I now had three options of what to wear – on the downside I had to let the weather decide it for me! Now I just had to wait and see…
Posted by: Claire | June 12, 2012
In January I received a very normal looking white envelope in the post – so normal in fact that the postman wrote on it to say he’d left a parcel for us. I opened it to find the most amazing letter I had ever received – the Lord Lieutenant had been asked by the Queen to request my presence at her Garden Party! The event would be held at Sandringham, to celebrate her Diamond Jubilee.
The letter said that I had been nominated because of my contribution to the community! I was beyond thrilled to get the invitation; but then I read the small print – the letter was not a guarantee of an invitation, it was a pre-invitation. I had to send my details, plus those of my guest (my Mum, of course) to the Lieutenant’s office and then I had to wait. I also couldn’t tell anybody either – that was the hardest part; but I didn’t want to tell people and not get an invite, so I kept my secret, despite feeling it on the tip of my tongue several times!
So I waited and I waited, then I waited some more. By April I was convinced that I wasn’t going to get an invite. In fact I even went on to Google and did a quick search to see if people were talking about their invites, so I’d know for sure I wasn’t going to get to go. I didn’t find anything, so I had a glimmer of hope.
Then I decided that I really, really wanted to go, so I just had to get an invite! I even booked an appointment with my hairdresser on the morning of the Garden Party – just in case! Then the next day a very, very exciting envelope arrived. It had my name printed in calligraphy and was franked with “From the Sandringham Estate” in red ink on the front and the Royal seal was embossed in red on the back – I was beyond excited!!!
Inside was this extremely beautiful invitation…
The invitation came with instructions, a list of timings for the day and a dress code. So began the preparations for a once in a lifetime event – literally you only get invited to one Garden Party at Sandringham!
Posted by: Claire | May 30, 2012
I believe that everybody deserves a life that is more exciting, more amazing and more wonderful than any film or book. A life of fun and pleasure, of sunshine and smiles, of great memories, exciting adventures and stories that people want to hear. I think that by the end of our time on Earth we should be full of tales to tell, stories that people want you to share. They will want to hear about all the things that you have done, the places you have been and the people you met along the way.
I think that it’s every person’s right to live an extraordinary life, to be the star of their own life and I want to help people create the story of a lifetime, no matter what barriers they may face.
There are so many obstacles that we face every day just to exist, health, money, commitments, they all seem to trap us, to hold us in place and stop us living the life we dream of. Some of these are immovable, there is very little we can do to change them. I know because I’ve been ill for nineteen years with a condition that has no treatment and no cure, all I can do is live in the hope that either I get better on my own or “they” discover some kind of medical treatment. I feel that I have two choices, I can sit around and wait for that to happen, while my life slips away from me, or I can make the most of my time now. Live now!
So that’s what I choose to do and it is a choice, one that I make every single day, even on the days when it would be easier to just give up, close my eyes and hide from the world and my reality. Life isn’t always easy; but it’s up to us to make it worth living. I believe that no matter what your circumstance, what challenges you face, you can have a great life, full of all the things that everybody wants – happiness, laughter, fun, friendship, freedom and adventure.
That’s why I set up Holidays From Home because I know that I’m not the only person who feels like this. I know people who are doing incredible things, living their lives and refusing to let life stop them from following their dreams. They won’t take no for an answer. They may have to adapt what they do, they may have to work round a situation, a problem, a hassle; but they will find a way, because they are determined to have the life they want, because they know they deserve it.
My personal love, my heart’s wish is to travel, probably because I’ve had to be in one place for a very long time – six years bed bound, six years house bound. I’ve always had a sense of wanderlust, the desire to see new places, try new things, meet new people, so being confined to one room, in one house, is a cruel challenge for me. That’s why I looked for ways to escape the four walls that enclose me, the physical barriers that stop me from taking flight. I found ways to travel without travelling, to Arrive Without Leaving.
I’m passionate about helping people, about using my own pain, and experiences to make sure that other people don’t go through the same thing or at least help to alleviate some of that pain. I believe that nobody should feel alone in a situation, whether that’s stuck at home on your own or in the middle of a crowd. Isolation is cruel and devastating; but with today’s technology there is no longer a reason for anyone to feel isolated. I want to bring people together, people who may have completely different lives; but who can be a part of a community, a global family, and together we can all take pleasure and appreciate the amazing world around us.
This is my dream and it’s what I’m using my life to create. I know that time and energy are the most precious things we have, so I want to use mine to make a difference, to create something beautiful, incredible and positive. That’s why I’m here, that’s why I do what I do and that’s why I will keep doing it for the rest of my life.
Posted by: Claire | April 26, 2012
Last weekend I did a guest blog post for the fabulous Grace Quantock, who runs Healing Boxes. Check them out here..
Grace is doing a photo blog series, called Waist Height and Wearing, of ill and disabled people in their favourite outfits. I thought it was a brilliant idea and was happy to do a post. With all the rain we’ve been having, it was a challenge to find some time to get outside and get Mum to take a few pictures; but amazingly the sun shone the day I’d had my hair done and so we popped out into the garden and I was really pleased with the results!
Here’s a sneak peak…
You can see my full blog post on Grace’s site here… I’m number 12 so you’ll need to scroll down slightly; but check out the rest of the incredible things Grace does. She’s one busy lady with Healing Boxes and her new project Sick Chick to Trail Blazer.
Posted by: Claire | April 10, 2012
Today I woke to a tweet saying Disabled woman ‘s virtual holiday to London will bring the Olympics closer to home. It was sent out by the local newspaper Twitter account and I realised with a burst of excitement that my article on the new Holidays From Home virtual London trip must have been in. I was so relieved and pleased. I followed the link and saw the brilliant article. I was really happy with it, it covered everything I wanted to say.
I dispatched Mum to go round to the paper shop, where she got several copies; but I was amazed and slightly horrified to see my face on the front cover! That’s the first time I’ve been on a cover and I was on page 9 – my lucky number!
Front cover of the Evening News
Mum took me round to the shop later in the day because they had a board up outside with a headline about my being in the paper and I had to see it for myself. We even took a picture….
Holidays From Home in the Evening News, the board outside the paper shop.
When you send out a press release, you never know if anything will come from it; but I was so delighted with the coverage and very, very grateful.
Posted by: Claire | April 5, 2012
I’ve been gradually noticing the lighter evenings; but tonight for the first time I really appreciated that spring was here. I’ve even been able to sit out in the garden the past two days which has been wonderful! The spring flowers are out, with lots of brightly coloured daffodils and the fresh green of new leaves is emerging on the plants and shrubs. It feels really hopeful.
I’m making the most of the nice weather while it lasts, since we had a great spring and then a poor summer last year. You feel like you have to be out in the sun as much as possible, I’m doing all I can to up my vitamin D levels. I even took the laptop out and sat writing some of the virtual London trip today. Topically I did the day set in Kensington Gardens and drew on the sounds and senses around me, including some very chatty blackbirds, to help imagine the experience. I did visit the park years ago; but I’m going to be roping in some of my London friends and traveller contacts to help add some more details to the virtual experience. I’m going to create some virtual Olympic games events to do while at the park, that will also be living room /bedroom friendly. That’s tomorrows task – I’m hoping I’ll be able to get outside again, I feel much more creative when I’m in the open air!
Spring is probably my favourite time of year. Everything feels so much more hopeful, anything seems possible and there’s the promise of a beautiful, warm summer ahead. Let’s hope the weather listens and delivers on the promise this year!
Posted by: Claire | March 24, 2012
Tonight I went out for a meal with my mentoring group. We wanted to meet and have a catch up, to see how everyone was getting on. It was really lovely to see everyone and to realise just how far we’d all come since we first joined the group. It was run by Kate Wilde from Engage with Business, who is really motivating.
I love interacting with other people who are facing the same challenges. I love being able to share experiences and also just have a good chat, which our meetings seem to always become. There’s often food involved, normally cake; but tonight’s meal was delicious!
When we first started, Kate got us all to fill out a card with three things we wanted to achieve in the six months the group met for. Tonight we got our cards back and I took mine with a small amount of trepidation. Had I done any of them? How much had I really achieved?
This was my list:-
- Create a London holiday that I’ll be proud and excited to market.
- Increase my marketing online. Reach out to more communities.
- Film a video about the holidays and how they work, show the fun.
I was delighted to realise that I was part way through each goal.
- I’ve started the London holiday, with two days written and two almost finished. The rest is planned and ready to write.
- I’ve been doing regular blogging here on my Holidays From Home Blog. I’ve also upped my Facebook interactions and I’m looking at ways to connect with more online support groups for things like carers, specific illnesses, anxiety, agoraphobia, fear of flying, as well as parents at home with kids looking for things to do to keep them entertained.
- I start a course a week on Monday learning how to do my own videos, so I’ll have some ready to upload and get out into the world.
It’s reassuring to know you’re on track with your goals and that you are going in the right direction. The coach I’m working with suggested having a book and keeping a list of my goals written in it, so I can check back to see when I achieve them. I have to do lists; but this sounds much easier to maintain and keep track of. Fun even! I’m sad that the group is over; but I’m sure we’ll all keep in touch, social media makes it so easy now. It will be great to watch people grow and to share my own progress with them.
You can check out their sites here. Loved it – www.lovedit.co.uk/ Second hand children’s clothes.
Rebecca Coulby Interior – www.rebeccacoulby.co.uk Kitchen, Bathroom, Interior Design
Wright Learn – www.wrightlearn.co.uk/ Driving Instructor
Gary Smith Property Solutions – I’ll add his site when it’s done.
Engage With Business – www.engagewithbusiness.co.uk/ – Business Coaching
Posted by: Claire | March 19, 2012
Today has been a magical day! A day when so many different projects, ideas and moments have come together and I literally feel like I’m flying! I’m working hard to stay grounded and not get too carried away. I’m buzzing with ideas and wondering how I’m going to get them all done.
They say you should do one thing every day that scares you and today I signed up to do an online course for making your own videos. It’s something I’ve been wanting to learn more about for Holidays From Home. I think it will really help to be able to do some videos explaining what it is that I do and how people can enjoy the holidays. The thought completely terrifies me though. Not the recording part, I think I can do that; but knowing what to say, finding my voice so to speak.
My finger hovered over the mouse button; but I saw the organiser’s picture today in a group I’m part of and just knew I’d work with her, having no idea who she was, or what she did. My task this week has been to get the courage up to make a video and I’ve been putting it off. Then I got the email which came at the moment I was looking into other people’s videos online. A coach has been telling me I have to connect with my audience more and that she thought video would really work for me, so it all felt like the Universe giving me a major push. I decided I would listen. This is it, if you want to check it out http://videorockstaruniversity.com/
Watch this space for some videos featuring moi in the coming months!
Posted by: Claire | March 16, 2012
I love going out, anywhere – down to the shops, into the city, the cinema, out to meet friends. Being stuck at home the majority of the time means that every outing feels like an adventure, a chance to escape from the same boring four wall. Just being in the car, seeing the world go past is exciting.
However there are times when you just want to go home, shut the door and keep the world out. I’ve felt like that today, mainly because my brother was rushed into hospital at the weekend. He’s fine now and was sent home the next morning; but the shock and emotional roller-coaster has taken its toll and I feel I need time to recover, despite not being the one who was in hospital.
My Mum and I went out to get some shopping this morning and the world just seemed too loud, too bright, too frantic. I felt like I was displaced from time, wandering around a bit like a zombie, kind of amazed that the world was still going on as normal when we’d been dealing with such trauma.
I was so relieved to get home, to the peace and tranquillity. I think there are times when you don’t want to venture out, when you’d rather be living in a space where you feel safe and calm, where you can control your own environment. It made me begin to appreciate how hard it must be for people who suffer with anxiety and agoraphobia, the impact it must have on their lives. I’ve always thought that the virtual holidays would be great for them too, as they face the same barriers to going out and travelling as I do. I imagine that they wish they could be leading normal lives, going on holiday, doing what everyone else does, just like I do.
I’d really like to be able to reach out to these communities and share the virtual holidays, because after my very minor taste of that life today, I want to be able to bring some fun and escapism for them too.
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