What I got for my birthday

Before I start I want to say I'm not bragging in any way, I just enjoy reading these sort of posts so thought would share some pictures of some of the lovely things I got for my birthday earlier this month.

I posted here about how I felt before the day & surprisingly this year I was excited about it! My little Miss had strict instructions not to wake me up (!) so I had a bit of a lay in & had lots of nice messages when I woke up. Then I went downstairs to be greeted by an excited girlie who couldn't wait for me to open my presents. Between you & me, I couldn't either!

I had lots of cards & gifts so felt very lucky. I can't share pictures of it all separately as there were too many so will post as much as possible without making it too boring. But I want to say a huge thank you to everyone who gave me stuff as I really appreciate it. People know me very well as everything I got I would have chosen myself & there was a lot of sparkle :-)

So in no particular order here we go...

I didn't want to do too much especially as our fundraiser was only 3 days later so I went for lunch at my favourite vintage café with little missy, hubby & my mum. We had cakes too. Of course!

We spent the afternoon chilling & some of my friends poppped in to bring yet more cards & presents!

As I am a member of the Crown & Glory Glitterati (which if you read my blog you will know what I am talking about!) I got a sparkly crown for my birthday so of course it would have been rude not to wear it (& someone else did too as you can see above!).

I was pretty shattered by the end of the day but had been totally spoilt so felt like a little kid with all my lovely goodies!

In the evening I ran a bath with one of my new Lush bath bombs & decided to have some champers. We've had a bottle since Christmas but don't particularly like it however I reckoned I deserved a cheeky glass.

I drank some while I was in the bath but didn't really enjoy it so I also had a glass of Jack Daniels on the rocks (an old favourite!) which made me realise why I don't drink as I am intolerant to alcohol!!! Palpitations galore & awake most of the night... oops. But all in all a lovely day & despite being a year older I shall still act as crazy as ever! Age is just a number as they say...



M.E Awareness day 2015 & Team Princess fundraiser

M.E Awareness week is now over but I want to talk about what we achieved as sufferers as it's quite a big deal. May 12th was our Team Princess fundraiser, on international M.E Awareness day.

I am so proud of everyone who raised awareness by talking about it, posting pictures, sharing stories, raising money or generally just being awesome as there are a lot of pretty amazing people in the M.E community.

So our fundraiser, as you will know if you read my blog, was where a group of us sufferers became Princesses for the day. Due to us being poorly & unable to do any typical physical fundraising stuff, last year our lovely Queen Sian came up with the idea so this was the second year of it happening. A lot of time effort & (non existent!) energy went into the planning & Sian really deserves a medal for all her hard work. We all massively appreciate everything she did to make the event a success.

My day didn't start so well as my mini Princess wasn't well so had to stay off school. She had a poorly tummy & was flaked out on the sofa. My original plan was therefore not going to happen! I had luckily had some pictures done the previous day so I could try to pace a bit on the day. Everyone had been wondering what my outfit was for ages so I could finally reveal that (surprise surprise with a Frozen loving child) I was to become Princess Anna!

My sister does childrens' parties & has the costume already so she kindly lent it to me! I have to admit I did really like it (probably because it's blue!) & I've had so many compliments about how much the hair suited me which is quite funny. I accessorised with some Crown & Glory. Naturally.

When you are poorly & have a very low supply of energy it's really difficult to be online for any length of time at once. However the aim of the game was to raise awareness as well as money, so that's what I did. Flooded social media with pictures & the link to my JustGiving. Which totally wore me out but it needed doing.

I had already received lots of donations before the day itself but I got lots of others on the day too. I am extremely grateful to everyone who supported me. I am a little disappointed in some people but won't dwell on that & instead shall say that the people who did donate really have made a difference. They showed they care. They read my story. They understood why it was so important to me. That I want to try to remain positive that some day a cure will be found for M.E.  That I would do anything to give my daughter a mummy who isn't poorly. And every person who did donate made me feel like I matter. I will keep fighting because the government doesn't put much into M.E research so if sufferers don't raise funds too then who else will do it for us?

Anyway Anna was not the only Frozen costume that I had been hiding. Yep that's right... Elsa made an appearance too!

I can safely say that blonde does not suit me & that I didn't get complimented on it!!

My mini Princess had perked up a bit by the afternoon so I asked her if she wanted to dress up for 5 minutes. Luckily she said yes. And this was the result... mini Anna!

The next pictures I absolutely love but they make me feel really emotional at the same time.

I love my girl so much & I will always cling on to hope that I might get better in the future. Who knows what will happen but what I do know is that the money we have raised will make a start. I managed to raise £746.25 including gift aid for ME Research UK and as a team we have to date managed to raise a whopping £5858.28 for every single registered M.E charity in the UK & 1 in Australia. Not bad for a bunch of poorly people hey!

If anyone that hasn't already wants to donate, my JustGiving is still open but not for long. You can donate by texting AMLC99 £2, £3, £5, £10 etc to 70070 or you can visit my page at www.justgiving.com/princessali

We also held an auction in the evening & the items I had made managed to raise a bit of money for Smile for ME so that was an extra bit of happiness to end the day.

It has taken a while for me to get over the event, it totally wiped me out, but I am proud & so glad I did it.

Lots of love & huge hugs to all my supporters (!) & everyone who is affected by M.E in some way. And to my fellow Princesses (& Queen) you are all amazing :-)

Princess Ali


1 weekend, 2 perspectives

Myself & Sian from ME, Myself and M.E thought for our awareness post we would blog about our weekend meet up a few weeks back. Myself & Sian both have M.E, Myalgic Encaphalomyelitis, and are severely affected. We decided to meet up half way which is an hour's travel for both of us. By documenting our weekend & sharing it from both of our perspectives we wanted to show how even though we both have the same illness & the same amount of travelling to do, how differently we experienced the weekend. And to show how varied the symptoms we get are. This blog post is part of Sally's #may12thblogbomb. You can read plenty more awareness posts on her blog sallyjustme.blogspot.co.uk


Meeting up with spoonie friends is always lovely but it's also always challenging as there is no guarantee we will feel up to it on the day. M.E is very good at ruining plans & messing things up last minute.

Sian & I had arranged to get together & meet up halfway between where we both live. We booked the hotel a few weeks before & although it was more expensive, we chose the option to be able to cancel if we needed. If we had booked the room that couldn't be cancelled, chances are we would have had to & lost our money! I always opt for Premier Inns if possible as they are really good despite being fairly basic. Familiarity always helps with illness I find. I have always had good experience with Premier Inn & the beds are super comfy too.

We booked one night for the Saturday so on the Friday I packed my bag with some stuff & tried to rest as much as possible & again in the morning. We were planning on setting off about 12pm & had planned to have lunch at my uncle & auntie's house as they live 5 minutes from the hotel. We went the usual way but found that the road we take to get on to the motorway was closed, so we had to do a big detour which added on a bit of extra time to the journey. I get so uncomfortable travelling & my back starts hurting really quickly so I try to put something at the bottom of my back for a bit of support. I also feel a bit car sick so it isn't ideal but the car is the easist way of travelling for us. My daughter was really good & was occupied with some activity things so I was able to close my eyes (obviously I wasn't driving!) & put my ear plugs in.

We arrived at my uncles a bit after 1pm & I had intended on resting when we got there but due to arriving later than planned we were starving! So we had lunch & then I went to lay down. However because I had done a fair bit, I was already flagging so resting didn't help much. The best thing to do with M.E is to rest before you feel like you have burnt out but that's not always easy to do.

I had got a text from Sian in the morning saying she wasn't good & was getting some sleep so when I heard from her again while I was resting & she said she still wasn't good, I felt really worried for her & didn't know if she would be able to make it. She messaged me again after a while saying they were going to set off in a bit. Had she not be able to come, I'd of course have been a bit sad about not seeing her but would have totally understood as unpredictability is one of the things about M.E & you get used to it. Luckily though she was on her way!

When we arrived at the hotel it was around 3pm. The staff were really friendly & the receptionist was quite a joker. He had a laugh with my daughter which was quite amusing! I had telephoned a few days earlier to request a room close to the entrance as I always find it easier being near, not that it makes much difference as I still can't really walk. We went to the room & I had a lay down. On the comfiest bed ever! I had hoped I would have a snooze but I didn't. Sleep does not come easily to me.

My husband took my little girl to the park to let her burn off some energy! I was feeling a bit worried about Sian but then an hour or so later I heard my daughter's voice & she came bursting in saying she'd seen Sian! Who she adores. Yay!!

When she got to her room she sent me a message so we went up for hugs! It always feels so relaxed when we meet up. She was with her parents who are also lovely. I had bought presents (& Tunnocks teacakes!) & Sian had brought me my birthday presents so I was allowed to open them early! I was spoilt & my little Miss also got some stuff so it was really nice. Sian showed us how to make barefoot sandals as I really wanted to learn & she is rather skilled at beading! I was relying on my daughter remembering how to do it as my memory isn't the best.

It was suddenlty around 6pm & we thought we better go for some dinner.  There was a TGI Friday next to the hotel so we headed over. It was unexpectedly busy & really noisy. A lot of M.E sufferers experience sensory overload with lights & sounds so it was a bit stressful. We were given a table in the corner so although it was really loud, it didn't seem quite as bad than had we been in the middle. I tried to forget about the noise & focused on the menu!! We had been saying about getting a cocktail during the previous week but in truth if we'd had one we would have regretted it. I developed intolerance to alcohol when my M.E started & I get palpitations after I've had it. Plus it would have gone straight to my head!! Sian's mum did in fact get one though so we posed for a picture with it.

Sian & I decided to share a platter & it was yummy. Until I found a hair in my potato skin! It's a good job I was stuffed on breaded mozarella sticks already. I always seem to find stuff in my food hmmmm.. I did mention it to them as they cleared up our plates & they were lovely. They actually knocked the cost of the platter from the bill!!

I realised how tired I felt & it was also way past my daughter's bedtime. She was starting to act silly so it was time to go. We went back to the room & I plugged in my electric heat pad, which I take everywhere with me now! The plug socket isn't next to the bed though which is a bit annoying but it just about reached. Charging phones is a pain as you can't use it while it is charging & need to get up once it has finished haha. Sian had thought ahead & brought an extension lead so I need to remember for next time.

Finally my daughter went to sleep & I had planned on watching something with Premier Inn's free WiFi but it was so slow that I would have needed to upgrade so I decided to try to sleep instead. Hubby fell asleep too, people who can sleep so easily annoy me!! I went to the loo before bed & the light suddenly went off. So I was stranded in darkness. Fun! Found my way back & took some painkillers (using my phone light as it was now slightly charged!). My ears were ringing loads which I get a lot anyway but it is enhanced when I've had sound overload.

I didn't sleep great & then woke up (early) when I was sleeptalking & my daughter thought I was talking to her so I woke up when I heard her saying "mummy??"! I felt really really poorly with the M.E. I took some painkillers & tried to nod back off but I couldn't. I was extremely fatigued & aching badly everywhere. I got quite upset & felt sick as I felt so rough. I didn't think I would make it to breakfast & told them to go without me. But then after having a cry & taking different painkillers I decided to go as I was starving. Managed to climb into my wheelchair but I felt really spaced out & basically just rubbish.

We got a table & I didn't feel able to get up so they got me some food & a drink. I hate feeling useless but at least I had made it down there. Once the meds kicked in a bit & I had eaten I started feeling slightly better. Only slightly though! I managed to get up for some fruit & then saw Sian had come in so they sat at the table next to us.

Sian hadn't slept much & I could see she didn't look good. We were chatting & then she came over really poorly. She needed to leave & I felt so upset that by us getting together, when she hadn't been good in the first place, it had made her feel so poorly. It wipes us out so much doing the most basic of stuff & I'm not sure if I looked as bad as I felt but to say M.E is an invisible illness, it really isn't that invisible.

We went back to the room so I could lay down & I had a message from Sian saying they were leaving so they came to say goodbye. I rested a little while before we left but I felt so poorly & knowing we had to travel back when I felt so bad was stressing me out. I felt so ill & in so much pain whilst we were in the car & even though it was less than an hour's journey it seemed to take forever.

When we got back I went to bed & I was so cold I had to layer up. My body seems to go into shock a bit when the M.E is so bad but I fell asleep & slept for 2 hours. I felt horrendous when I woke up & I was sweating due to having so many layers on!! I started getting really upset & I find when I get like that, everything becomes massively exaggerated so all the stuff that was on my mind became about a thousand times more of a problem. I had a big rant & had to just stay in bed. I hate it when I feel like that. And knowing I felt like it from doing something so nice & so "normal" to other people makes it really difficult to cope with. However I would rather feel like that as a result of doing something good &  it was definitely worth it.

We were lucky enough enough to be able to get together despite it impacting massively on our health afterwards. But had we felt like we do on our worse days we likely wouldn't have been able to get out of bed in the first place. M.E is one evil illness.

Please see Sian's post here for her version of the weekend.



It's ma birthday!

It's the eve of my birthday & usually on this day I feel really sad about having yet another birthday while I am still poorly. But, despite having a crazy stressful week, I actually feel ok. And I'm quite excited! Shock horror.

Just found this in my diary that my little Miss wrote at the start of the year... "Brfday"!

I have been getting cards & presents through the post (thank you everyone) & feel like a kid again. I've not planned much apart from going to my favourite vintagey café for lunch & having one of their amazing cakes! I have had an early present from the very lovely Sophie at Crown & Glory. When you are part of the Glitterati (see my previous posts about it if you don't know what I'm on about!!) you get a birthday crown. It's so me & just so sparkly!

I have a few friends popping in on the day but I am keeping it low key because it's only 4 days until our Team Princess fundraiser. Please see my post here about it.  I would love to raise more money before the event... so as mentioned in my post if anyone can spare a few pounds in lieu of a birthday card/cake/glitter then please donate via my JustGiving or text AMLC99 £1, £3, £5, £10 etc to 70070. You will literally make my day.

And on that note I shall bid you goodnight. I have my rollers in my hair, some sparkle on my nails & my dress hung up for the morning. And I don't even care that I am getting old (I really am). You're only as old as you feel anyway so that makes me about 16.


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