Quick Christmas Update

I’ve reread my last post; I was fairly fraught with nerves and anxiety wasn't I? Luckily I’ve calmed down a lot and it wasn’t depression, which I’m incredibly relieved about. It turns out one of my medications was making me a bit loopy and out of sorts! I attempted to go cold turkey but that only made things 10x harder so I’m back on the medication (a pain reliever) and coming off it slowly and carefully.

Although this now means I’m in more pain, I’d rather deal with that than cope with panic and anxiety attacks. I now have a real empathy for real depression sufferers, who deal with those horrible feelings and thoughts 24/7 and can’t see a light at the end of the tunnel. I also can see why drug addicts find cold turkey so hard and distressing.

Anyway, on a lighter note; It’s Christmas!! I’m in Hastings visiting Mike’s family and finally feeling festive; I’ve kind of missed all the build-up due to being so I’m my own little world but I’m looking forward to seeing our niece and enjoying the company, the food, TV and the presents!

I’m wishing all my readers a pain free, stress free Christmas, try to enjoy it all, saviour the build-up, the day and the winding down to the closing year, it will all go so fast that we’ll be in mid-January before we know it!
Much love and festive wishes
L x

Shhh don’t talk about it...

There are things in life I try not to bring up in social situations; PMT, bowel movements and lastly depression.

People don’t want to hear how rubbish you’re feeling; or at least I thought not. People I’ve spoken to have been great.

I have been finding this relapse really hard work, I have felt at my lowest ebb this past week and am breaking out the tears and tissues regularly. You see, about three months into a bad bout of illness you get fed up not being out seeing people going to events or even just meeting for coffee, I want to go see my friends but on another hand I don’t. What do I talk about when the main thing is my life at the moment is how miserable I feel – not great chit chat!

I apologise to my friends far and near for my lack of contact. I’m alive but not very well. I’ve found myself leaving my phone in other rooms so I don’t have to contact or talk to people, I’ve left my e-mails into the hundreds of unread and it’s ridiculous because not one person I know doesn’t realise what I’m going through at the moment.

Even as I write this I’m tearing up and getting all jittery, which is again silly as it’s not as if any of you can see me right now!

That’s the thing with depression it causes a self pitying feeling verses a “get over yourself” fighting fit nature. One minute I’m in bits on Mike’s shoulder the next I’m plough through e-mails and forcing myself to get one with texting people back.

I have a lot to be thankful for, I’m never ungrateful for my family, Mike, Friends, flat and the clothes on my back but sometimes you need to be a little self indulgent and just let it take hold for a while. Pain is a stressful entity that can almost make you feel like you’re going mad, and at the moment I do feel a little just that....mad.

I’ve had this silly thought going round and round my head that I don’t want to be known just as the girl who is in pain and talks a lot but that is me. I may just be on this earth to talk about the pain but to be honest about it and tell you all when I’m feeling rubbish because then you’ll know that the drugs certainly do not work and in my case I think they’re possibly causing the depression. What can I do but take them, ride the storm of spasms and madness and see you all in between and on the other side!

Forgive my ranting!

L x

Fun in Fundraising

Hi All,

Thought I’d give you all a little update on how fundraising is going for Motivation (see Plans for Motivation by clicking here).

Motivation is an international charity who aims to provide wheelchairs tailored to peoples different needs. I have, sometimes, struggled with being disabled and not being able to do all the things I want to because of my health (Bungee jumping, driving, Parachuting) and sometimes forget how lucky I am to live in a Western country that provides wheelchairs and a country that although sometimes lacking in disabled access is trying to become a free and accessible country for all to enjoy.

So, some months back I pledged that I would fund raise for Motivation and help others enjoy the freedoms I sometimes take for granted. Unfortunately my health has been so bad that I’m struggling to get out of bed some days let alone plan big events.

Luckily whilst I’ve been ill friends and family have started, in my honour, raising the much needed cash for wheelchairs!

My friends husband Ben raised £110 in sponsorship by running a 10k race! This is only £30 shy of a whole new wheelchair bought and paid for – amazing isn’t it? Such little money to us is a whole new world to someone else!

My favourite restaurant is The Sunflower Eaterie. The Sunflower is a small cafe’ on Queens Road (just off Southend High Street for locals here is their Facebook page), I take all my friends there for lunches, fry ups and roast dinners. The owners Michelle and Scott are a lovely couple and they hold quiz nights with raffles raising money for charities, and after my piece in the localpaper, they chose Motivation on my behalf!

I went to my first quiz night a couple weeks ago with Mike, My Dad and our friend Siobhan. For £10 you get to enter the quiz and for that you’ll also get dinner too! We had a ball, our team – Three Cripples and a Carer, came 5^th out of 10 teams – not bad eh? The Sunflower will be giving me the proceeds of their hard work in January J.

The Sunflower - Borrowed from Michelle's Facebook

Although I’ve yet to start my fundraising I want to send a huge thank you and hug to Ben (and Helen for “encouraging” him to do the race ;) and to Michelle and Scott for starting to really make a difference to people’s lives and believing in a cause that is so close to my heart!

Family and Friends get ready as I’m planning on hosting a dinner at the Sunflower next spring amongst other things, so get ready to buy tickets!

L x 

Monkey World and Longleat Safari Park

Sorry for the rather long gap between holiday posts! No, sadly I’m not still in the West Country, living it up in the Chapel visiting cider museums and eating out in lovely restaurants. No, unfortunately I’m back home and suffering for my enjoyment. I think the holiday activities bought on an even more troubling relapse. I’ve been quite low, not really been in the mood to see friends, hiding away in our little flat feeling sorry for myself – self indulgent, I know!

But! I have been doing some self butt kicking and am letting people help when I'm struggling, keep telling myself "It could be worse", resting when needed! Boom, in your face relapse!

I have wonderful photo’s to share with you from Monkey World (Yes, the one from TV!) and Longleat Safari Park. Both were amazing.

At Monkey world there are 65 acres of enclosures all housing rescued Monkeys who have been beaten, given hard core drugs and abused buy circus owners and sea side entertainers. If you ever see some one offering you a photo with a real monkey – STOP! Please don't have your photos, report it to Monkey world. These poor creatures are kept in dreadful conditions and even when they are rescued it takes, months, years even their entire life to get over/cope with the trauma.

Here are some of my favourite pictures from the day, we were lucky enough that Mike’s parents bought us all a guided tour around the park so we got some pretty special snaps....

At Longleat Safari Park has been open for 60 years to the public holding 15 main attractions where the animals walk amongst the cars as you drive round. At one point we had monkeys sitting on our car bonnet and lions leaning against our car for the warmth – amazing! There was a lot of clapping on my part!

At the moment Longleat has a Christmas fair where you can buy Christmas themed decorations, gifts and old fashioned sweets. There is a magnificent singing tree that does and wonderful light so to accompany the music – well worth the wait to see it happen.

Also at Longleat at the moment there’s a little train that runs through the park into a snowed forest where Santa is waiting with gifts for the little ones. Our Niece Beth was confused by this bearded man handing her a present and soon got the idea when she opened up the parcel to find a stuffed tiger and a dog toy.

The park itself regardless of the Christmas fair is an amazing day out for all the family, it’s an experience you’ll never forget!

L x

Disabled Parents Documentary (Get involved!!)

Just a quick notice; I’ve been contacted by Special Edition Films regarding the making of a future documentary; they’re looking for disabled parents aged 16-28 to take part. If you  or know of anyone who fits the bill please contact Lindsey @ Lindsey@specialeditionfilms.com

L x

Somerset Part Two

Sunday at the Chapel was a lazy day, there isn’t much to report and I wasn’t a fatty eating all day either – surprising, I know!

Monday Mike, his Dad and Brother in law Andrew went to the Bovington Tank Museum so us girls went to close by Dorchester to go to the Dorset Bear Museum. Beth, our niece, loved the almost 6ft bears as much and the tiny ones; it’s a small yet sweet attraction and because of our under 3 and carers discounts an inexpensive one too!

Beth

Sweep, Sooty & Sue!!!

After some lunch at a place called Taste in Dorchester we headed to Yeovil and a soft play center called Rug Ratz to amuse Beth whilst we waited for the boys to return. As Mike’s sister Emma, is 7 months pregnant and I’m well… me (i.e. crap) chasing Beth was left to Andrea (i.e. Grandma!). When the boys came back all testosterone fueled from the man toy exhibition they took over with play duty then we headed to Ask for dinner.

One of my best friends, Helen, moved the Ivybridge in Plymouth in July and since we were close by we met up in Exeter today. Staying in town centre, we took Beth and Helen’s son, Alex to another play centre called Dinkys which was two minutes’ walk from the cities Cathedral. With the little ones in tow we decided not to go inside, it’s such a beautiful building but currently covered in scaffolding – annoying!

Goofing outside the Cathedral 

Exeter had just a huge city centre, Southend is looking remarkably small and dull now. Exceter has such a wide range of shops and they’re all huge – there’s a 5 storey John Lewis and a Cathy Kitson store… I may just be tempted to move here myself!

Lucky for Southend, I come home in three days’ time!

L x

Somerset Part One

So here we are again, taking you with me on my travels. I’m hoping that I don’t go on the mammoth food tour like it was in Australia (Newreaders go back to April this year on the blog) as I don’t have a glorious pool to swim in or the energy to work off any goodies, but as you’ll read In this blog alone I’m not doing so well.

We left for Somerset quiet late on Friday afternoon once Mike’s folks had finished work, so we headed out with intent of getting there before midnight with only one pit stop. After a 5 hour agonizing drive only aided by a pillow under my feet and a large dose of my pills, we arrived at our converted chapel. Which by the way; is bloody gorgeous!

The chapel has three double bedrooms but can sleep up to 8 adults if you’re not too fussy about privacy. There are three bathrooms plus another separate loo, three spacious sitting areas and two kitchens!

Inside the Chapel

None of us were up for a late night after travelling and we were all sound asleep by midnight.

Saturday morning we had a lazy start, me being the last up after a bad night and although I vowed just to eat toast my one sliced ended up with a fried egg, beans and mushrooms on top – fail! The chapel has a leaflet stand with all the local and Devonshire attractions pamphlets and being in the West Country we decided on seeing the Sheppy and Son’s cider tour and shop – we all know I love a good drink!

We headed to the near 100 year old site which has a small museum, tea rooms, a playground, an orchard open to the public and their shop. As you can see our two year old niece, Beth, had a ball as did we after a trip around the museum we headed for cream teas…. It was lunch time though!!

Beth having a ball

Gorgeous warm and huge scones were delivered to our table with hearty bowls of cream and jam, I was second to finish only behind Mike!

Whilst Beth played in the park Mike and I headed for the shop where we bought a 12 bottle selection of Sheppys best Ciders and if that wasn’t enough Mike bought a gallon bottle of their sweet cider and I added Marmalade injected with rum to the pile!

At dinner (pizza and chips – more fails!) I have half a pint of cider and became warm and fluffy… lucky I either using my stick or wheelchairs really!!

Anyway, one saving grace is I avoided all snacks and the scone became my lunch!

Will try harder!

L x

Tea, Toast and Butterflies

I’m on my holidays! I had planned on writing to you all last week but I had nothing personal to report and my brain was too fuzzy to write about a disabled parenting and a new campaign to support new parents with disabilities. I will still write this piece but first I need a break.

People have this funny idea that because I don’t work (cannot work!) that I shouldn’t go on holidays and ask: How is a holiday any different to my lazy and yet luxurious disabled pain ridden life?

Let me explain; pain is a full time job, it’s bloody hard work and exhausting, you try spasming and feeling like you’ve been set on fire – just for a day, then let me know how happy and full of life you are.

Anyway I’m off to Somerset for a week with Mike's family to stay in a converted chapel – how awesome is that? And although I hope that I’ll be well enough to explore Taunton and the towns surrounding it, but if nothing else the sofa or bed will have a welcome and different view from the one in our flat.

Until I’m in relapse I always forget how easy it is to get cabin fever and Mike and I have spent the last month in our living room catching up with each other, TV programs and the odd friend along the way.

I’m sure the boy must be sick of me by now, any couple spending 24 hours of every day together need a break so having 5 other people including our 2 year old niece to chat to will be a nice break for us both!

This morning became our official holiday start when the boy bought me tea and toast in bed (He’s a keeper) he made sure I took my pills (probably so I stop or at least to don’t moaning about the pain! Lol!) and a butterfly came in to join us… we shall name her Betty. A lovely start to a well-deserved break for us both don’t you agree?

Betty

L x

I'm not ill for kicks!

I’m having a rough day. I know that I have to rest in hopes of a better day tomorrow, but weirdly I find it hard to do that. Although my day’s at the moment consist of writing, comping (entering competitions) seeing friends and housework, on day’s like today I have to stay on the sofa, TV on and do nothing.

I feel guilty for doing this. Helping family and friends with admin tasks and researching pieces for them on Google makes me feel useful. This is, I’ve found, a common feeling amongst disabled/ill people who are on benefits, those who are genuine cases, feel terrible not feeling well enough to do the most mundane tasks. I feel like that today.

Mike is at my mum’s house doing DIY for her and the two things on my list of things to do were 1. Get up 2. Go to Sainsbury’s. I managed one those and since I’m sat on my sofa, Jeremy Kyle on in the background (for amusement) you know which one that is.

I'm not ill for kicks!!

Tonight I was meant go to my friend Jo’s house for a girls night in and a Chinese but since I’m feeling so rough and Jo lives in a first floor flat with no lifts, I can’t go.

I’m not writing this piece for sympathy. But I wanted to write this blog to open people’s minds to illness and disability and that just because we may not look ill put simply: we are suffering.

Yesterday was a good day I felt quite well I went out on my mobility scooter, I had put on make-up, made sure I’d straightened my hair and wore nice clothes. I had two reactions the first was a man came up to me and asked if I had stolen my grandmothers scooters “for kicks” and the second was an elderly couple came to tell me that it was such a shame I was a pretty girl. The couple had meant to be sweet but I didn’t really feel that great after either throw away comment, especially after being accused of theft!

So today I’m struggling with HAVEING to rest, I don’t want to be sat here with Jeremy Kyle for company but I HAVE to not want to, it’s not a choice.

As I said in the beginning I’m hoping for better day tomorrow or at least in two day’s time as I have Halloween drinks and Afternoon tea on Saturday!

Wish me luck!

L x

Paused

Hi All,

I wanted to write a letter to you all, keeping you up to date on my little world and adventures. Well, I say adventures but my life seems to have paused for the time being.

The old CRPS pain is putting me through the mill, whilst kicking me in the shin and stomach then covering me in oil and feathers for comedy effect.

I’m suffering, the pain is bad, and possibly getting worse, my lovely GP has put up my medications (of which there are now 9 of them!) so I should be grateful for them taking the edge of the burning, twisting and spasms but in the process of all these medications, I’ve lost my mind somewhere along the way, I’ve become a dozy mare and forget where my shoes, stick, handbag, phone etc are, on a regular basis.

I spend half my days on the loo and the rest of the time guzzling water to combat a wonderfully yucky side effect of a dry mouth, I’m talking Sahara desert dry, tongue stuck to the roof of my mouth dry – all while my left leg has such terrible spasms and cramps that I’m practically Irish dancing whilst sat down - I’m so attractive right now!    

My social life has taken a hit too – the ultimate price of illness, you see less of your family, friends and the outside world and when you do see any one you apologise for forgetting their visit was ever occurring and then do an Irish dance whilst they look at you in full pity!

I’m seeing some friends for a Halloween night out and have said I’ll only be out until my bed time – which is currently 10pm at the latest – it sucks!

On a more positive note The Gogo scooter died *sad* but I do have a new mobility scooter called an Eclipse *yay!*. So we’ve named him MR Eclipse as he’s more robust that the old Gogo and no I won’t be changing this blog name as I’ll then seem like I’m married to a mobility aid and as crazy as I feel I’m going at the moment I’m not THAT loopy just yet!

Mr Eclipse!

L x  

Shall I grow my monobrow?

Mike’s back tomorrow, he’s only been gone a fortnight but I’m as excited as ever!

I have this ritual that I clean the house, cook a requested meal and make sure that I’m plucked, dyed, shaved, buffed and painted to perfection, so he comes home and thinks “yeah there’s a reason I keep coming back”. Some of you may think this is very 1950’s housewife but I do not care!

Today is eyebrows, moustache and nails; tomorrow morning will be dedicated to the rest. It’s hard work maintaining this bod especially when throwing up in between!

Cupcake Nails by my Sister Nicola

Don’t get me wrong I do all of the above even when Mike’s away I’m not some Neanderthal woman all stubble and split ends and I certainly don’t work hard on my appearance just for Mike; it’s mainly for me and my self confidence.

Self confidence is such a delicate thing, mine especially, I spend a silly amount time doing my face and hair every morning because people still comment that “you look nice for someone in that (wheelchair)” or “Wow your quite pretty for disabled person” or my utter favourite being when a young lad kissed his teeth and declared that I was “a fit unable”.

It’s not as if us disabled folk think “Oh well, my legs are buggered so I’ll let my monobrow grow out!”

On Friday alone night I’d borrowed my sister Nicola’s curlers to only look like an electrocuted scarecrow in search of those wavy effortless curls my sister sports... effortless my arse!

But imagine being a celebrity all that attention on your hair colour and size of your thighs, my internal critic is enough let alone other people printing my flaws.

One of my favourite bloggers the Beautiful Betty Bee wrote a wonderful piece on the Daily Mail Newspapers’ abuse of Clare Richards (a la’ Steps) and her weight Read here. The piece got me thinking; we (not just women, society) beat ourselves up too much in the quest to look fabulous, but how many of us truly believe in our own fabulous-ness? Betty has started a campaign to get her readers to submit their most treasured outfit that makes them feel like a goddess see/like/submit here!!

I was looking through the 1000+ photos of me on Facebook and although I agree I scrub up well and am looking good after following Weight Watchers (1 ½ loss maintained 1/2 st more to lose but I’ll tackle that when I’m fit and able or is that a “fit and able unable?” according to my admirer!) but I’ve never truely felt stunning and I wish I had done or at least thought to myself “damn girl you’re hot!” and actually believed it, sad isn’t it?

But just how do we boost self confidence? Tips please?? Recommended reading material? Until then I’m off to ponder this over a tub of Jolene.

L x 

Winning!

I’ve been doing my disappearing act again, with good reason I might add. The old relapse is taking full hold of my life at the moment and between the pain and sleep deprivation, I’m slowly increasing my medications but they generally make me sick as a dog.

Why bother having breakfast?

From the medication I’m now dealing with nausea, sickness, dizziness and bouts of passing out – as you can imagine I’m as useful as a chocolate tea pot, filled with earl grey then sat on a radiator – not only useless but a bloody mess as well!

But I’m sure you’re as sick of reading about this as I am talking about it so I’ve been busy winning!

As I’ve mentioned here before I love a good competition! I’ve always entered them even as I child submitting drawings and poems, raffle tickets and prize draws aplenty and since my brain has turned to temporary mush I’ve been entering a lot more competitions as even I can fill out my name, address and telephone number. Although throw in a simple question and I’m vexed but since I’m awake between 19 and 22hrs a day I’ve been filling my time entering forms, sending postcards and running up my phone bill (sorry Mike!) and low and behold I’ve been winning!

There is something so lovely about a “You’ve won!” e-mail or a box turning up (although I had thought, on occasion, that I may have I been sleep ordering goodies?!?) and when you’re feeling as rubbish as I currently do it’s the little pleasures that really count.

My first e-mail this month was from the Stephen Cronk at Mirabeau Wine. A small family run business in the Provence, Mirabeau was set up by Stephen after becoming disillusioned with the corporate world. In 2009 Stephen and Wife Jenny packed up their young family and moved from London to the heart of Provence to start living a dream in wine making.

Three years later they’re selling their wine in 6 countries and you can buy it from Waitrose (£8.99) here but the real test for them came when they sent me that e-mail declaring that I’d won 6 bottles of their Rose’ – the pressure for Mirabeau was on!

Mirabeau

Oh who am I kidding? I know nothing about wine despite several wine courses and knowing some very knowledgeable connoisseurs, but I do know what I like and I love Mirabeau Rose.

I won’t try to explain the notes or the dry/sweetness as I’ll just sound like a plonker but three bottles down, on top of some heavy medication, I was willing to brave an almighty hangover but it never came! Mirabeau Rose is a gorgeous wine and I’ll be making a special trip to Waitrose at Christmas to keep my spirits up!

Enjoying a large chilled glass of Mirabeau

Thank you Stephen & Jenny!

I must also mention the lovely people at Chat Magazine and Flahavans Oats company who together sent me a hamper of porridge, oatmill and some lovely Flahavans branded kitchen utensils and an apron (ready for the new kitchen, which by the way is so close to being finished!). Flahavans have been making their oat based cereals, biscuits and snacks for over 200 years – I think they may know what they’re doing by now!

I made myself a hearty bowl of the Flahavans oatmeal yesterday which came in a very vintage style tubular tin (that I will be keeping after use!) and I was set for the morning, creamy and delicious! 

I was literally just about to post this blog when there was a knock at the door I'd won three Marian Keyes books from the wonderful people at Penguin Books including Marian's latest book The Mystery of Mercy Close which only came out a fortnight ago! - Thank you very much Penguin Books!

  

People keep asking on my Facebook how I win these competions, well, I’m in it, so I’m winning it - simples, and these prizes give my day’s a little, but well needed boost!!

L x

*Disclaimer - I have not received any payment for this piece - I'm just a nice blogger and competition winner who likes to show my appreciation in words!  

Service and Reputation

This week I’ve experienced both very poor and bloody marvellous customer service and work from the building trade. Everyone knows that the reputation of a builder, plumber, glazier, carpenter or electrician is paramount in hiring a work man and personal recommendation’s are like gold dust.

I hate getting any of the above in for quotes let alone letting them near my woodwork or plug sockets. I know so many people that have been the victims of terrible or over priced work or at worse threatened by the people they’ve hired – disgraceful! With Mike working away so much and I hate to play either card but.... being a woman and disabled I feel like a vulnerable customer, inviting these people into my house.

I’ve probably watched too many episodes of Watchdog and bad builders shows but I now know to get those gold plated personal recommendations and to Google search firm’s for bad customer reviews or low star ratings, but you can still end up feeling that people just don’t care about their work let alone their customers.

This week I had a firm, who I won’t name, booked in to do work whilst Mike is actually in the country, as you’ve probably gathered from former posts that these are short windows of time, and we spent 8 hours chasing up the whereabouts of the workmen to be told “yes we’ll call you back in half an hour” or “We’ll be there by 3pm” and to eventually be told “sorry there’s been a big mix up we can’t come in until the 28^th!” (23 days after the original day of work was planned).

Mike was furious and I was frustrated. I have used this firm before I know they’re a nice family run company who when they get round to the work are fantastic, but their customer service is shoddy! Now do I recommend them? Pre warn people about their bad time management? But show them the wonderful work they do? What would you guys do?

But on the flip side this week I contacted my trusted plumber friend Ryan. As I write this he and Mike are talking D.I.Y in the kitchen whilst Ryan fit’s my new sink.

It’s been 4 Months since we whipped the sink out but no more dishes in the bathroom and buying endless bottles of water – yay! Every time I did I kept hearing a childhood conversation with my Mum:

Me: “Mum! There’s no juice/milk/cola in the fridge!”
Mum: “There’s plenty of water in the taps!”
Me: “Boring!!”

Twenty years later I’ve never missed those blooming taps so much!!

Water!!!

Anyway, Ryan has fitted us in around his work, never over charges for evenings or weekends and it just a lovely friendly guy. I now have his number on speed dial ready for water related emergencies and ready to pass on to family and friends with that gold glowing personal recommendation!

A few manners and going that little extra mile for a customer is just priceless, but why do so many companies get that wrong?

L x

Taken by Surprise

I had some great responses about the Echo article, a majority of them were my gorgeous family and friends but it seems all the retweeting, sharing and forwarding that everyone did got my plans out there!

I have one friend running a 10k in aid of Motivation, a friend who wishes to have a musical evening at their piano shop, my favourite little cafe’ and I are in discussion for a charity meal and several people have been e-mailing regarding donating their shoes (see Plans for Motivation here).

So, we have lots planned, all very exciting! Will keep you posted and hope that more of you get involved!

I’m desperate to get all of these evening running and sorted for next week but I have to reign in my plans and take it slowly at the moment.

The CRPS/RSD is still getting worse and I’m spending an increasing amount of time in bed or passed out on a sofa (literally!). I’m finding it hard not to get down about it, even though my lovely boy is home from California, I’m hardly the ball of energy and life he’d probably like to see.

To my surprise a constant companion of mine has been the Olympics and Paralympics. I spent the last five years since London got the bid, refusing to believe I would be taken in by all the hype and as I’ve mentioned on many occasions here – I don’t do sport! Watching, following or playing sports just doesn't appeal to me. 

I think it’s because I’m not competitive (unless I’m playing Monopoly against my brother Michael who’s a bad loser and an even worse winner!) but either way right up until the opening ceremony I was not going to spend hours watching something I didn’t enjoy just because we were hosting it.

Well, from the moment I saw our Queen doing a spoof scene with James Bond I was hooked!! I’ve spent many an afternoon glued to my TV getting so into the events that I’ve found myself hyperventilating, shouting at the box as though they can actually hear me and on occasion stood up with some vigour only to realise that wasn’t a great idea, it hurts a lot and collapsed back on the sofa!

I actually got competitive! I had many conversations about the medal ratio to countries population and by definition we were kick the rest of the worlds butt!

It’s lovely to see everyone as geared up for the Paralympics as they were for the Olympics. I did worry that it would be seen as a sub event, a winding down from the big event, but the news, facebook, twitter and countless blogs are all still as excited as I am!

To address a few messages I’ve had regarding athletes having CRPS/RSD and “if they can get up and do something why can’t you?” as I’ve explained before CRPS/RSD is different for every person, as is every other condition. We all have limits and some of us are luckier to have the gumption and higher pain threshold to deal with the condition better.

Although look at Rachel Morris – hand cyclist, gold medallist and CRPS sufferer. She gained a Gold in Beijing and sadly she had to have both legs amputated because of the condition, it got so bad, so painful and life was so unbearable that she had to have the amputations.

Rachel Morris -  Gold Medallist - CRPS Suffer

Life for Rachel is no doubt still incredibly difficult without her legs but she’s doing great things, like Rachel defending her gold medal many of us are defending our bodies against the condition trying not to end up having to take such extreme measures. 

Although the last month has brought day’s where I would kill for my legs to be amputated, I’m taking small steps (every pun intended!) to keep going, get out of bed and have a life even if it’s entirely done from my bedroom!

L x

  

Read All About It!

Yesterday I was lucky enough to have had a feature published in a local newspaper! A features writer, called Louise, messaged me via Twitter and asked if I would like a feature in the Essex Echo’s New Woman supplement about my blog, conditions and the new charity work I'm planning with Motivation.

Of course I jumped at the chance but then the asked if I would like to write my own feature Dream.come.true!

I’ve had letters in magazines published, poetry included in collection works books and I’ve been a part of school newsletters/papers since primary school but no one professional had ever asked me to write for them before and what made this sweeter was that they’d read the blog and still wanted me to submit a piece!

So yesterday there I was grinning back at myself from page 23, I friends and family bought the paper and sent so many messages of support and had requests for copies of the paper world wide – I felt the love!

If you’d like a read of the article and see it and the whole supplement in a PDF format click here but below is the article text. (Some of you will notice it is slightly different to the one printed – as expected newspapers have to trim and crimp!)

Yes, I’m disabled... but why are people always shocked to find I don’t lie at home moping

Suffering with chronic pain gives you a lot of time to think, when everyone else is at work or asleep and you’re suffering with a long term illness it can take over your life and you can become depressed – but only if you let it!

For the last 20 years I have been suffering from Complex Regional Pain Syndrome (CRPS). I have learned and developed many tried and tested forms of relaxation and distraction methods, from high doses of pain killers to evenings watching Love Actually with a tub of ice cream.

I am generally a positive person and for the last two years I’ve tried using my experience with CRPS, a chronic progressive disease, to write a blog. I wanted to create awareness of the condition and to challenge people’s perceptions of disability. People are often genuinely shocked that I have an active social life, have travelled at far as Australia and that I have a lovely boyfriend, Mike.

I won’t lie, CRPS along with having mild Cerebral Palsy has taken my life in a different direction to the one I’d planned but I’m always fighting disabled stereotypes. I left school at 14, written off by some teachers, but I still managed to pass my GCSE’s with B and C grades and went to college. I was told I couldn’t have an independent future but Mike and I saved up and we bought our own flat at 23. 

I may never have a full time job but I’ll do my best to volunteer and help others, including being Trustee of the Family and Relationship Centre http://www.familyandrelationshipcentre.com/ and Sycamore Young Carers. 

I have a life despite illness, not a life that revolves around one.

I get a lot of e-mails asking how to cope with pain and discrimination but the majority of messages ask how to date or find love, what to do when people stare, how to customise a wheelchair and how to do practical things like apply for disabled discounts and benefits.

One particular night I was online at 4am unable to sleep due to crippling spasms and nerve pain. I came across a statistic that said that 100 million people worldwide cannot afford wheelchairs. Here I was sulking because I couldn’t go out while there are people out there who never leave their homes or have to be carried around by loved ones, unable to lead independent lives.

Although I’m lucky enough to have a wheelchair and a mobility scooter I have gone through periods of illness where I’ve taken to my bed for months unable to leave the house. Although that may be only a glimpse into the lives of the people I’ll be raising money for I can completely empathise.

In this rare selfish moment I felt I should snap out of it and start using my own frustration and pain to do something worthwhile to help others whilst keeping myself going.

After some searching I found a charity called Motivation, an international charity that supports people with mobility effected disabilities, supplying them with customised wheelchairs adapted to their surroundings. This was the Motivation I needed.

I contacted the charity telling them about my blog and my idea to support them; I also pledged to my readers that throughout this particularly difficult phase in my illness I would be fundraising for wheelchairs.

I’ve had some wonderful support for the cause; friends, family and complete strangers sending in ideas, offering services and most importantly – money.

My family, friends and I can only do so much. I have a lot planned for the next few months but I’d love people to get in touch, get involved and help me to aid and support people, giving them a chance of freedom.

Please go to www.ladygogo84.blogspot.com or e-mail Lynsey_Ellard@hotmail.com

Hope you guys like the piece, let me know what you think!

L x

Motivation

As promised I’m finally here to announce that my chosen charity is Motivation – an international charity support people with mobility disabilities. They raise money to give people high quality but low costing wheelchair specifically designed for developing countries and their sometimes difficult surroundings and environment. I felt that not only was I moved by the stories and their work the fact that they’re called Motivation – kicked me up the butt!

With chronic pain it’s so easy to become insular and a selfish, forgetting that is always someone worse off that really needs your help!

Since I’m becoming housebound I plan to start small; specially designed seat cushions that relieve pressure (and helping prevent sores) are £15, spare wheels are £25 and a full wheelchair with motivation is £135, so I would like to start by raising enough money for 1 cushion, 1 set of wheels and 1 wheelchair = £175 to ease us in.

Who’s with me?

Now when I started to discuss raising money for wheelchairs (when I found out that up to 100 million people need one!) I asked you all for idea’s;

There were the simple classics sent in: bake sales, sponsored silences, swims, sports & fasting. Offers of; Pub quizzies, gigs, raffles, pamper parties, make overs, tea parties, body shop, Ann Summers, Pamper Chef and Vie parties have been very popular choices too! I cannot wait to be involved with all of the above and plan to do as many as we can possible fit in!

The more unusual suggestions were surprising; sponsored diets, both Mike and I have done them in the past, they completely motivational – your charitys money is held hostage by your scales – I’m only 3lb away from my goal weight but does anyone want to volunteer?

From where I sit – the idea being that if you are completely able bodied that you’ll be sponsored to spend a week in a wheelchair – going to work, socialising and living your daily life seeing what it’s like from where I (and millions of others) sit. I very interesting idea, as those who did these would be offered a guest post on Diary of Freedom – almost a social experiment.

It has been suggested that I compile a booklet/PDF of my favourite blog posts or write a completely new piece for this project. Would you guys pay to read my work?? It’s something I’ll have to think about!

For all the wonderful suggestions above there were some damn right odd and frankly disturbing; one anonymous reader suggested I walk for a day, now I thought it was a sarcastic message, but the tone of the message and reasoning “I would appreciate my wheelchair” makes me think they were deadly serious. If I could spend a day walking around I wouldn’t be writing this blog and I’d be travelling the globe walking miles and miles and miles writing about this wonderful world!

Another wrote in that after seeing Cherry Healey’s how to get a life documentary on prejudice and finding out that disability is a niche’ in the adult entertainment industry that I “could make a killing for yourself and the charity”. Surprisingly this is not the first time this has been suggested!

So, thoughts? What do you all think about these ideas? Tweet me here, Facebook me here, E-mail me here or leave a comment below!

L x

For more information on Motivation go here, Tweet them here or see their Facebook here