Team Princess fundraiser 2016

The time has come again for us to become Princesses on M.E Awareness day! For those of you unfamiliar with what Team Princess is, we are a group of sufferers who become Princesses for a day to raise awareness and money for M.E charities.  We have raised over £10,000 so far for UK & Australian charities and have funded research and drug trials as well as supporting various services the charities have to offer people.

Me and my mini Princess last year 

Our founder and official Queenie Sian, who blogs over at Me, myself and M.E came up with the idea a few years ago. She wanted to raise awareness as well as fundraise but she also wanted to celebrate some of the people who display different qualities which in her eyes make them true Princesses. Being brave, strong and having courage to name a few. For being there for each other despite all suffering. Spoonie sisters we like to refer to it as.

Sian has written a very informative blog post with all the information and details of how to join Team Princess which you can find here.

This year, despite my illness and all it brings, I decided I wanted to try to be more positive. I have surprised myself with how I've managed and every night I have written something good from the day in a diary. It has made me realise that even on the worst days, for whatever reason, there is still always something good no matter how small. Which kind of leads me into the charity I have chosen to support this year...

Those of you who know me will know how much I love a Random Act of Kindness (RAOK)! I really enjoy sending people things and knowing it has made them smile is the nicest feeling.

So, I am excited to announce that the charity I am hoping to raise lots of money for is Smile for ME. It is a fantastic charity run by two lovely ladies, Alice and Gracey, who are both poorly themselves. They send personalised presents to sufferers or carers who have been nominated by someone for a smile. I have nominated friends through them previously and all I'll say is that it was emotional when they received their parcels!

M.E can be a very isolating and debilitating illness so to receive something lovely and unexpected can make a huge difference and give you a massive boost. I would love to be able to raise enough money to send lots and lots of Smile packages! If you wanted to nominate someone you can complete the nomination form.

Of course on May 12th I will be dressing as a Princess so will be sharing photos and information on my social media. However if you want to donate now, my fundraising page is HERE!

I have a Facebook page for my blog here which if you follow you will be able to keep up to date with stuff. I will also be holding an auction on or around the day and have some fab prizes which have kindly been donated by some of my favourite independent businesses. I will provide details shortly! The Team Princess Facebook page will have lots of information about the event so please give us a like to be kept in the loop. The team JustGiving page is here.

I have had a lot of amazing support in the previous two years so I am really excited about this one! Thank you in advance for donating and supporting me. This illness is really difficult to live with so if I can help make fellow sufferers smile then I'll be happy.

For more information about what M.E is and how it affects me, please see some of my previous posts What is M.E?, Diagnosis & remembering life before M.E, (In)visible, A day in the life of ME!

Thank you for getting to the end as I know it's a long one!

Ali
xx

So long 2015

Here we are again.  Another year done. Can you actually believe it?

I'd love to say how much better I was but the truth is I'm not. M.E is a permanent fixture in my life & isn't going anywhere soon. It took me a lot of years to accept that & every New Year's Eve for a long time I would be full of hope that the following year would be the one when I'd get better. Full of hope for getting my life back. Full of hope full stop.

But now instead of dwelling on the things I haven't done or can't do, I am focusing on the things I have & I can. When you're chronically ill, you can feel as though your life passes you by & that you spend the majority of the time resting or generally feeling poorly, but there are lots of things we DO achieve & should be proud of. And there are many happy memories made in the process.

It's nearly time to open my memory box again - see last year's post about it here - & I will be doing it again next year. It's something nice to look back on at the end of the year & smile at the happy stuff that happened. Things that non-poorly people would likely take for granted & not consider a big deal are a big deal to us. A lot of the stuff in my box is to do with my little girl so I can't wait to read them with her. At her request we are having a party tonight (which according to her means she can eat lots of sweets & chocolate!!) so we will open it then.

2015 has been full of ups and downs but there have been lots of things that make me realise I am lucky. Yes things could be better, but I've also managed to do some fab stuff for which I am very grateful. I've picked out some of the memorable ones & they all make me smile but there are lots more too. Pictures are amazing for creating memories too & probably the reason I take so many! So in 2015...

I went to my first vintage fair & loved it

We went to Harewood House where we have membership but I don't often get there so it's extra special when I do

My girlie turned 6

I met up with Sian, one of my fab spoonie friends & we pretended to drink cocktails

I spent lots of sunny days in the garden

I had a lovely birthday & was very spoilt

I got a new camera

We had another successful M.E Princess fundraiser

I changed my hair colour

We baked

We had a lovely holiday in Majorca

We had a fun trip to Sheffield to stay with friends we met on holiday

We had fun with Autumn leaves

We went to Stockeld Park & I ice-skated on my wheels

I had a lovely spa day with my sister for her birthday

I turned the house festive

I am staying positive & am looking forward to doing more happy stuff in 2016. I've already booked to go & see my bestie in Essex and I have one of my oldest friend's wedding in October. My close friend is having a baby in March & I'm so excited! There are people I want to see more of & other spoonie friends I've met online who I want to meet for the first time so we shall see what the year brings in terms of fun! I have also decided I am going to use one of my new diaries to write something positive every day. So again I can look back & realise there are good things in each day even though it doesn't often feel like it.

Finally before I go, I want to do a quick shoutout to everyone who has been there for me this year. Whether it's to be there when I've been down or to make me belly laugh just because. And despite me having my illness, friends & family who have included me in stuff or asked me to do things even if I've not been able, I really appreciate it. I love you all!

Happy new year!

Love Ali 
xx

Mummy will your M.E ever go?

My daughter is exactly 6 & a half today which is something to smile about but this morning my heart broke a little bit. We were having a snuggle for 5 minutes before she got ready for school & out of the blue she asked me if my M.E will ever go. I told her I didn't know but that I hoped so & she told me she hates it as I can't do much with her or go out to many places & it isn't fair. Ouch.

As you may know I try to remain cheerful & try to be positive despite everything, but it totally got me & although I tried to give her some reassurance I had tears streaming down my face. I told her the stuff we do together is still nice & that this is just how it is. She said she just wishes we could do more stuff together. I couldn't agree more.

I said we would have a chat after school & write a list of some of the things we could try to do. My carer took her to school for me & the tears flowed. It isn't fair, she's so right. The pangs of envy towards other people who can do "normal" stuff are always there. I think that's understandable when you have so many restrictions & wish you could do the stuff you always took for granted.

I get so wiped out so quickly that when we go out I may not be up to driving back. Safety has to be a priority & obviously with such poor mobility I can't really walk anywhere either.

I usually have a carer with me when my husband is working & they collect my daughter from school so I am up to doing stuff with her rather than being too wrecked from the school run. However today when my carer came she was really unwell so I sent her home. The exclusive mummy time my little girl had said she wanted was happening quicker than I had planned!

I had promised her yesterday that we could bake & she never forgets stuff so it was the first thing she asked. As she can pretty much do it herself now I got everything out & she did all the work! Apart from a few bits like putting them in the oven, she did such a good job.

The finished results made her (& me) so proud! They tasted delicious too :)

After the baking I felt really tired so I had a lay down on the sofa & little Miss watched tv while she ate her tea. Then she joined me & we snuggled. My mum popped in after work & helped her have a shower so I had a quick rest.

I decided it was time for the chat & we started writing a list of things we could do. A few ideas we had were going for a hot chocolate at a local café, an ice cream at our favourite Italian deli, finding out about hiring a scooter at the park & going for a ride! Conker picking, finding leaves to do Autumn craft stuff with & going to a park to draw pictures. She also asked if we could go & watch a show at the theatre so if we do that I will have to have someone with us to push the wheelchair but I think it would be something we'd definitely both look forward to.

I am going to do a treasure hunt on our street too. I haven't told her about that one yet but I know she will love it.

I asked her what the main thing that she wanted was from what she had told me this morning & she said just to spend more time with me on her own. She said (& it really made me laugh) that because her daddy takes her out and about a lot that it's/he's a bit annoying!! She said it doesn't mean she doesn't like him, just that she wants to spend time doing stuff with me too. Bless her!!

I feel the same as she does & our afternoon today made me realise I'm not as useless as I sometimes feel.

If anyone has any suggestions for stuff we could do please leave them in the comments.

Thanks for reading :)


Ali 
xx

Holiday Part 2 - Puerto Pollensa Majorca 2015

Following on from my previous post about the journey - here - this is the rest of my holiday blog.

Part 2.
Arrival & holiday

I am always so relieved when we've landed safely & feel like I can finally relax. Time to enjoy myself! Because I had wheelchair assistance, we had to stay on the plane until everyone had got off. It makes me feel a bit claustrophobic when they all stand up the second the seatbelt sign is off waiting for the doors to open.

Once all the passengers have got off, they bring an ambi-lift to the doors of the plane. They always take the wheelchair off you when you get on the plane as it goes in the hold, but in my experience it has always been waiting for me before going into the terminal. While we were waiting for them, the cabin crew & captain were at the front so my little girl thanked them for the flight and the captain asked if she wanted to sit in the cockpit. Oh yes she did!! She loved it. He told her she could turn the wheel so she thinks she moved the plane. And she pressed something which made a noise so she thought it was brilliant. Think she would have happily stayed there!

One of the perks of having assistance is that you don't need to queue. Which at any airport is a pretty good thing, but at Palma airport it's excellent as it's so huge! By the time we got through security & to the carousel, our luggage was there so we went to find the coach. We must have been some of the last people to get on it as not long after we were ready to go. That was a bonus as sometimes we can be sat waiting for ages. It took about 40 minutes to get there which compared to the 90 minutes it had said in the brochure was a pleasant surprise.

We've been to Puerto Pollensa once before. I was pregnant at the time so it was around 7 years ago but I'd always wanted to go back. It's a fishing port & it isn't very built up so it still feels really traditional. I had already had confirmation from the Travel Agents that we'd been given a first floor room near the lift as I had requested so when we got to the hotel & we saw the room I was really happy. The hotel has had a recent refurb & is lovely & modern so I was pretty excited.

I can never relax properly until the unpacking has been done so we cracked on. We were still in time for dinner so we headed down after a quick change. I was exhausted & wasn't that hungry as I'd eaten on the journey but I still had a few bits. We were all inclusive too so no having to make sure we had money on us!! The restaurant has been extended since we were there & they have chefs cooking fresh meat & fish each night as well as a huge choice of other stuff. Was very impressed throughout the week with the food.

We went to sit round the pool & had a drink. It was so hot & I finally felt like I was on holiday. There was entertainment going on but we didn't stay long as we were ready for some sleep after a day of travelling. I was hiring a scooter but the place was shut until the morning so we headed to bed. I dosed myself with painkillers & sprayed some heat stuff on my wonky body!

Our hotel was the biggest in the resort with lots going on. We stayed at the Fergus Pollensa Park. Hotels are always a bit noisy at night/early morning but that's to be expected. We managed some sleep & even though I felt pretty knackered & achey the next day, we headed down for breakfast. There was everything you could possibly want to eat. Then it was time to go & chill by the pool!

I had booked the scooter via reception so went to collect it at the time they said it would be there. However in typical Spanish "mañana" style, they were not on time! It was an English lady who brought it for me so we had a chat & I was rather happy to discover the scooter was blue, my favourite :) And of course my little Miss loved it...she spent all week wanting a lift on it & I think she was as disappointed as me at the end of the week. I love having the independence of a scooter as oppose to being in the wheelchair. I did find it hurt my hand where I was having to hold down the accelerator but other than that it was good.

Just in case you wondered I am wearing shorts in this!! 

The outside area in the hotel was really nice with decent sunloungers & not the usual white plastic things you usually get. There were activities going on throughout the day for both children & adults. I hadn't really intended on sending my daughter to the Mini Club that often but it turned out to be really good & they did stuff around the grounds so we could pull a chair up & watch close by. They did stuff like colouring, yoga, pool games, garden games & every night was a mini disco. She loved it & made a lovely friend who she spent a lot of the holiday with & we spent time with her parents so that was nice. We are actually going to see them in a few weeks as they don't live very far away.

I felt really chilled whilst we were away, I went & had the odd rest but did feel relaxed round the pool & I was in the shade a fair bit as I can't seem to hack the sun very much these days. We had the occasional wander in the day but it was so hot that it was pretty uncomfortable. We went to the beach one day but it was busier than I thought it would be so we had a drink at a beach bar & left after an hour or so. Beautiful beach though.

The resort has the beach running along next to a road & from our hotel it was about a ten minute walk to the harbour where the cafes are. Some fab picture opportunities!

All in all we had a lovely time. I find the sun helps me loads too & would live abroad if I could. By the end of the week though I was ready for home. I think doing so much compared to normal was taking it's toll on me & also I was sick of all the food!! Which is really silly as I actually ate really healthily while I was there.. I was feeling pretty wrecked & the thought of travelling home was at the back of my mind. The journey home was really draining as by the time you've got to the airport on the transfer & gone through check-in then security you feel like you are ready for bed. But we had a few more hours yet! I was really good again taking off & did the looking out of the window thing but then turbulence started & I freaked. I really don't like it! Combined with exhaustion I was ready to cry. However, we finally landed safely & were soon home. I love the feeling of climbing into your own bed when you've been away!

I had really bad holiday blues for a few days & felt quite down but I'm ok now. I think because being away I escape everything & although I still feel poorly when I'm on holiday, it is better than being stuck at home not being able to do much. Once you get back it's like reality hits you & there's no escape anymore. But I have all the lovely pictures to look at & some really nice memories. And I would be back there now in a shot!

Ali
xx

Holiday part 1 - Puerto Pollensa Majorca 2015

I am going to split my holiday blog post over 2 seperate ones as it will be too long otherwise!

So here we go with part 1.
The Journey.

Even though I had done the majority of packing in advance, of course I still ended up a bit stressed the few days prior to leaving. The last bits seem to be the most stressful and I kept thinking of yet more stuff I needed. I was going to get some Rescue Remedy to try to keep me calm (or calm me down I should say!) but I never ended up getting round to it.

I didn't sleep much the night before, which always seems to happen when I'm going away no matter what time I am travelling. I am a rubbish sleeper anyway but add a holiday to the mix & I've no chance! I did manage a bit of sleep though & then woke up far too early. Great. I had to cram the last bits into my ever increasing hand luggage which included travel cushions, a few bits of make up, chargers, tablet, camera, travel documents & a couple of clear bags with various toiletry bits I didn't want to risk getting smashed in the main case etc etc. You get the idea. There was a lot! And it was heavy. Good job I had a wheelchair to rest it on!!

Fast forward a few hours & the taxi arrived. As the hubby was hoovering. Seriously.. hoovering. I was not impressed but it made me seem to forget about panicking so much as I was shouting that the taxi was there over the sound of the hoover. Men! I had done the usual "our cases seem really heavy" thing, despite us being allowed to take up to 22kg in each case. I do it every time. And every single time we are way under.

We had done the online check-in via the Travel Agent & had booked wheelchair assistance. However when we got to the desk they had no record of the assistance. Erm what?! Slight moment of panic but she said she could add it no problem. It's at the other end that I need it more. Palma airport is ridiculously huge so without them helping us through security etc it would be a nightmare with the wheelchair. But all was ok. And our cases weighed about 5kg under! Surprise surprise.

Little miss practising for her holiday!

Then it was security which always makes me anxious for some reason. But we were soon through. My daughter was relieved that none of us had anything bad on us!! We went through to the departure lounge & nipped to the loo. The next thing, we heard someone knocking on the door. And then again. Probably kids I thought. But no, hubby was standing there saying he had heard an announcement with our name saying to go to a particular gate as a matter of urgency. Bloody brilliant. However he hadn't been listening properly so had no idea where to go. 'Surely they wouldn't be calling us' I thought... I sent him off to find someone as I was annoyed I'd not had chance to look at duty free (!) & he came back a few minutes later saying it was someone else with the same name.. I was not very happy with him & I stomped (wheeled myself) off into Superdrug!!

I managed to grab a few bits I'd wanted for a while (Rimmel stay matte primer, holiday necessity!) then suddenly it was time to board. With having wheelchair assistance we had to get to the gate earlier than the other passengers. An hour earlier in fact. The guy found us before we found him & took us to the ambi-lift which is a special lift they use to take you up to the plane, which was quite far away. I was also complimented on my funky wheels several times which was nice! Why have a boring wheelchair when you can have a blinged one (post all about it here!)

Leading the way to the plane!

Our seats were towards the back of the plane & they had said we would board via the rear steps, but the lift goes at the front so I had a bit of a walk down the plane. It was fine though. We usually get on first but this time it was after everyone else. Cue all the stares from people! (This is when I feel like wearing a badge saying I have a chronic illness)..

And then the panic started. I hate taking off. I always sit with my eyes shut & my head under a pashmina because I'm a big baby, but this time my friend had given me a tip (you know who you are!!) to keep my eyes open & look out of the window when taking off. I didn't know if I would be able to do it, but I did. For the first time in years. I can't say I particularly enjoyed it but I was so proud! And it really did make a difference. I didn't feel as scared or as iffy as usual. Until the turbulence kicked in & I freaked haha.

Because the flight was only a few hours it wasn't that bad. Sort of. And it did go quite fast. Once they have been round with drinks, snacks etc & we've eaten half our sweets it soon passes the time. My daughter was kept occupied with various crafty bits I'd got her & her DS which I ended up playing Super Mario on for a while! There was a fair bit of turbulence on the way down so I wasn't as brave as on the way up (I was a complete & utter scaredy cat as my daughter would say) but after some breathing exercises & telling myself it was fine we were down. Yay, we were in Majorca!!!

To be continued..


Ali 
xx