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

Holiday packing - Spoonie style!

It's almost time for our holiday & I know a lot of people dread packing because it's such a chore. I never particularly liked doing it before I got ill so still find it a hassle but since having M.E I kind of get organised (or try to) several weeks before we so. Because if I leave everything until last minute then it will completely stress me out & make me burn out which may mean not being well enough to travel. And an even poorlier than usual Spoonie (see previous post here about what a spoonie is) is not a pretty sight!

As a holiday approaches, out comes all the small clothing or swimwear that hasn't seen the light of day for a long time. Some stuff I have only makes an appearance when it's holiday time then it gets put away in a cupboard never to be seen again until the next one.. I have some sarongs that are practically as old as me (& I never seem to wear them when I am away!) but it's almost become a ritual for me when packing. "Oh that old thing" I think as I put it in the case. And then re-pack it a week later at the other end wondering why I bothered to take it...

Source Pinterest

The thing I love about beach holidays is that you don't really need that much stuff. I mainly take dresses for the evening & they are always lightweight as no-one wants to be sweaty (or sweatier than you already are) on an evening. We already have to battle with huge hair that no matter how much anti frizz serum goes on it, never stays frizz free. I imagine I shall mostly be wearing mine in a high bun with one of my various hair accessories this time around. However choosing which ones to take has become more of a problem than which clothes to take. So I'm taking a fair few. They are only small so it's acceptable.

After asking (some may say nagging) the hubby to get the cases from the loft several times (why do men never listen?), he finally got them down & I discovered one of them was broken. I seem to remember my mum borrowed it a few years ago & it happened then (!) so no idea why we still have it! I've borrowed another one from her now so didn't have to panic buy a new one. We only take 2 cases between the 3 of us as my daughter doesn't really have enough stuff to fill a case so it's just a waste. Every time we go away I think we will be over on the weight but we never are.

I had a trying on session a few weeks ago & pretty much knew what I was going to take, some new but mainly summer stuff I had already. Of course the denim hotpants from my recent Primark haul are in there!! I also got my little girl to try her stuff on the other day. She's grown quite a bit taller recently so a few things were shorter than we'd anticipated. Good job her big cousin passes stuff down as she has some gorgeous dresses to take!

I am fairly sensible when it comes to shoes & am only packing 3 pairs of sparkly flats!!! I am hiring a mobility scooter when we get there, which I much prefer to using my wheelchair, so although I could get away with heels I'm not bothering. This was me on the scooter last year, as you can see I am really mature!

Currently the cases are in my daughter's bedroom half filled with our clothes ( not his as he will no doubt do it the day before!) & a few toiletries. That's another thing I find a hassle buying for a holiday so this year I did an online shop at Superdrug which made it a lot less stressful. Most stuff was on some sort of offer & I managed to get pretty much everything except children's suncream which we will get elsewhere. I always put some tape around lids & then put each bottle in a freezer bag as I had a shampoo leak a few years ago & it was a nightmare!

I used to pack loads of medicine type stuff (other than my own tablets which I always take in hand luggage) but don't bother with that much now as the pharmacies over there are so good, so if we do need anything we can just get it there. I always pack the basics like antiseptic cream & plasters. Oh and calpol which is a necessity with children!

I intend on getting my makeup bits & jewellery together this week. Not that I wear that much makeup on holiday as I will hopefully have a bit of colour on my face. A selection of lippies & some of the glittery eye liners I use from Collection cosmetics will be pretty much all I need. And I always end up taking loads of jewellery but don't wear half of it so am going to be sensible. Or try at least.

I have packed most of the evening stuff already on hangers as they never provide enough when you are away, plus it makes it easier when you get there. No matter how knackered I am, I always feel better once the unpacking has been done so tend to do it when we arrive & then can push the cases under the beds & forget about them!

A tip I learnt from my friend Sian who blogs at howtodealwithme.blogspot.co.uk & has a series of travel tips for Spoonies on her blog, was to pack your beach bag ready with what you need so depending on when you arrive you can just grab it & go without having to think about what to put in it. I found this useful last time so am doing it again. It already has my huge hat in & some sunglasses so I will add bits to it & then pack away with everything else.

I always split stuff between the cases so if one went missing at least there would be enough in the other to keep us going. And I always put a bikini in my hand luggage just in case both cases went AWOL!  I take an inflatable cushion in my hand luggage too so I can put it at the bottom of my back as I get so uncomfortable. I got one from Poundland & have tested it already as the one I got last time was rubbish & deflated every 2 minutes.

I am aware this is getting really long so going to stop now & I might do another post before I go. To let you know if I have managed to be as sensible as planned!

If you have any questions or tips please leave me a comment below. Thanks for reading


Ali
xx

Fundraising towards finding a cure for M.E

Once upon a time I wasn't ill. I had a good job & a great social life. The end! And if I could write my story now it would be a fairytale with a happy ending. However, living with M.E changes everything.

Over 12 years of suffering with this incurable chronic illness means I am somewhat of an expert but you wouldn't think so if you saw me on the days when I am crying & saying how I can't cope with it anymore. No matter how long it goes on it never gets easier. Ever. It probably gets worse as the light at the end of the tunnel gets further & further away.

Every year I am still ill makes me feel a little less optimistic about ever getting better. However I can't lose hope. And the more research that takes place, the closer they are to finding a cure. Which is why on 12th May, M.E Awareness day, a group of us sufferers are taking part in a fundraising event. We have come together to form Team Princess - see my previous post here about it.

We are all raising money for different M.E charities & I have chosen to support ME Research UK. Research is vital towards finding a cure & without funding it won't happen. So I am trying to raise as much money as possible. As I write this, I have exceeded £200 & I am very grateful to everyone who has donated so far.

With less than 3 weeks to go until the event I would love to massively exceed that amount & I cannot do that without the support of people. People who know me or may know someone who suffers from M.E & knows the devastating effects of the illness. People who know how difficult it is for me being a mummy with M.E. People who know how I used to be before I got ill & how much my life changed as a result. People who want to help make a difference. To help support a great charity & give people like me a chance of a cure being found.

It is my birthday a few days before Awareness day & I always get emotional around then as it feels like another year has passed that I am still poorly. But I am going to stay positive & hope that I can manage to do a little bit of something on the day. If you fancy donating in lieu of a birthday card & some cake then I would appreciate it lots!

My JustGiving page is at www.justgiving.com/princessali or you can text AMLC99 £1, £3, £5, £10 etc to 70070.

On the day we are holding an auction on our Facebook page here. Some of the crafty members of Team Princess are making stuff & I will be making some bracelets. Any money raised I will be donating to Smile for ME, which is a brilliant charity who send sufferers gifts when they have been nominated by family or friends.

Thank you so much for reading & for your support.


Ali
ME Mummy A
xx

Is M.E really such an invisible illness?

I have been having a really horrendous time the last week or so with my health. The after effects of my daughter's birthday & party well and truly kicked in. In the chronic illness world it is known as PEM (Post Exertional Malaise). I have felt like absolute rubbish but I have also looked like it. Which has got me thinking about whether invisible illness really is as invisible as the name suggests!

I am naturally slightly olive skinned but my face is always pale. Thank goodness for make up. On a normal day I don't look so good but on my "even worse than normal" days I look poorly. Really poorly. Pale (a nice shade of grey), drawn & just ill! My eyes are a big giveaway. Dark dark circles. People who know me know when I am worse than usual just by looking at me. So it's not really that invisible.

I only tend to go out when I am feeling up to it & I usually have make up on. Even if it's the very minimum, I feel (& look) slightly better with it on. So of course when people who don't really know me see me, they wouldn't necessarily know there is much wrong with me. So in that respect it is invisible. However the fact I am often in a wheelchair when I am out & about is a bit of a giveaway that there is something wrong. Although I imagine people may assume I have something wrong with my legs - which I do - but you wouldn't know it to look at me & unless I wore a badge saying I had M.E then people would have no way of knowing. Actually maybe I am onto something & I will start wearing such a badge!

Then you have the whole judging/ignorance thing. Like when someone as young (sort of) as me parks up in a disabled bay, despite having a blue badge which entitles me to park there, I get dirty looks galore & it's usually from the older generation! When the wheelchair appears I see their expression change & they often look at me with pity. It makes me want to shout at them & tell them to not be so ignorant. Which I may have been known to do but I can usually keep quiet these days. Usually!

Trying to raise awareness of M.E is so important to me. It's the reason I started this blog & I've had so much positive feedback from it which makes me happy.  M.E Awareness Day is on 12th May so I will be doing my bit to raise as much awareness & of course money towards research as possible! My previous post all about what we have planned for our fundraiser is here.

Last week when I was particularly bad for yet another day in a row, I had a bit of a blip & I started feeling like I couldn't cope living like this anymore. You can't imagine how it eats away at you. Changes everything. Ruins lives. But of course I have to carry on. I don't have a choice.

Finally, I want to share a picture that I have posted previously. The images are from the same day within a few hours of each other. PEM takes hold quickly when I've been out & the hours/days that follow are not pretty. I usually end up bedbound which is really hard to deal with. This was before & after I had been to watch my daughter's dance show. The day after was even worse!

Invisble? I'm not so sure.



Ali
ME Mummy A
xx

Team Princess 2015

It's 12 years since I got my diagnosis of M.E. And yet here I am, still poorly. March 2003 will never be a particularly happy memory!

I have had a really bad week healthwise. My usual positivity wavered. There has been lots of tears & moments of despair. The knowledge that I have to keep going is almost torturous sometimes. I have to carry on living like this though because what other choice do I have? My daughter is almost 6 & she has never known her mummy to be well. Which breaks my heart but she keeps me going.

However, it is that time of year again. No, not Spring (although I am liking the sunshine!) ...Team Princess is back!!

It's getting close to M.E Awareness day on May 12th. Which means Team Princess AKA The Princesses and M.E rears its head again. Woo hoo! Last year was when our fantastic fundraising Team of Princesses (& 1 Queen), all of whom are sufferers, was born. See my previous posts about it all here & here.

Our fabulous Queen Sian, who came up with the idea, has done a really detailed blog post about it here. It gives all the information about this year's plans. We will be donning our costumes, tiaras or whatever else we fancy on May 12th & I have something fun in mind.

We raised over £4000 last year for the charity Invest in ME but this year it will be a bit different as we will be supporting more M.E charities both in the UK & other countries.

Last year was made all the more special by our very own Princess Allan who was such a good sport on the day & made a better Princess than all of us in his shocking pink wig! Very sadly, a few months later Allan passed away & it hit the online M.E community really hard. This year, in tribute to him, we will all be wearing or accessorizing with something pink on the day.

I will be setting a JustGiving page up shortly so will post more about that when it is done.  We had so much amazing support last year so I really hope we can again this year. As well as raising awareness, we aim to make as much money as possible towards funding vital research in finding a cure for this horrific condition.

If you have any questions or would like to join Team Princess then please let me know :-)

Ali
M.E Mummy A
xx

My views on the press claims that M.E patients are scared to exercise

So the good old press wreaked havoc in the M.E world this week by claims that people suffering from M.E (also known as Chronic Fatigue Syndrome - CFS - which in my opinion is a rubbish name for it) would get better if they were not frightened to exercise. Or that by not exercising they are making themselves worse! Grrrr.

And I couldn't really keep my mouth shut about it even though I should really do the usual & roll my eyes at the rubbish they print. However I feel that if we, as sufferers, don't speak up then some people "may" actually believe it. And a lot more harm than good will happen to people, especially those who may be newly diagnosed, who take what is printed as gospel.

Several newspapers reported that new research had been released & claims that sufferers were making their symptoms worse by not exercising have really angered people who live with the (extremely debilitating) condition. There is something called Graded Exercise Therapy (GET) which some people within the medical profession think will help & it is used as a form of so called "treatment". These medical people think M.E is a psychological condition (it most definitely is not) best treated with enforced exercise, which only worsens the condition's effects.   

Before I got M.E I went to the gym about 3 times each week. I loved to exercise & keep fit. I even pushed myself to keep going before I had been diagnosed but knew something was wrong. It is one of the things I have found most difficult about the condition, having to stop.  Who would purposely choose to not do something they enjoyed? How can someone fear doing something they know will make them about a thousand times more poorly? It is common sense. Would you say to someone with a broken leg to try & run on it to make themselves better? No, I think not!

Try walking (or not walking if we are being literal!) in our shoes Mr/Ms journalists & tell me if you still think what you have written is true.

I find it so frustrating that even walking a tiny bit wipes me out so much that it affects me both with pain & fatigue for days. Any over exertion, no matter how small, has the same affect. I know my limits & if I could exercise without it detrimentally affecting my health then I would be doing it already. I tried to do a ballet dvd once years ago with very gentle exercises which someone had recommended but it knocked me sideways & I felt as if I had been run over!

I do think it is important, if we can, to keep our bodies moving a tiny bit but that is very different to exercise. I mean things for example like moving legs about a little. Of course all sufferers are affected in various ways so everyone is different & it isn't always possible. I have osteopathy regularly (which I will be posting about seperately soon) to help alleviate pain. I had lost all my muscle tone when I first started going a few years ago through being immobile for so long so I try to keep moving a bit when I can. However I know what I can & can't do & on my worst days can barely move at all.

Action for ME have printed a response to the press articles & this is what they said. Link to article here here 

If it was as easy to just exercise to get better then you'd have seen me back at the gym long ago. I wouldn't even make it past reception now without feeling like I would collapse! Harmful articles like the ones this week are the reason research into M.E & finding a cure are so important. 

Ali

ME Mummy A
xx

Illness on top of chronic illness

As if it isn't bad enough having M.E & never feeling well anyway, when I am unlucky enough to catch some sort of virus or bug or lurgy (!) it makes everything a million times (or so it seems) worse.

I started feeling like I was coming down with a cold a few weeks ago but it just kept lingering & didn't really get any worse so I (stupidly) thought I had got away with it. Wrong! For about the last 4 days I have had a cold. For healthy people a cold is just that. It doesn't affect them too much & they can carry on doing stuff. However add chronic illness into the mix & it becomes so much worse.  I am quite prone to sinus infections after a cold so I am having to try things to stop it happening like doing sinus rinses & using steroid spray which I have in just in case. If I catch an infection it makes me mega poorly so I really can't afford to.

Whenever I get ill it affects me so much worse than it would if I didn't have M.E. Even something as simple as a cold makes you feel like you have full blown flu even though you haven't.  I have the flu jab now & have avoided getting it the last 3 years since having the jab.  I used to catch it every year without fail & couldn't risk it anymore as flu & M.E is pretty much the worst combination ever!!

It is the school holidays at the moment & because I've felt so rough I've not been able to do stuff out of the house with my daughter, which I am finding quite upsetting today. As you will know if you read my blog I already find it hard not being able to do a lot of stuff but when you're ill on top of ill it really does get to you.

She knew I was upset earlier & before going to the cinema with her dad she brought me this note she had written me. She really is the best. My little sunshine ♡

ME Mummy A 

xx

Festive season & missing out

I am writing this because I am feeling pissed off & need to get it off my chest! My family have gone to a local coffee shop & the kids are meeting Santa. I am however too poorly to go out & yet again M.E has ruined something for me.

I have been doing well being positive lately but it's times like this when it hits you & you just feel so sad at having to miss out. Again. I have had a few very stressful things happen this week & it has all caught up with me now. If I had ignored my body & pushed myself to get ready to go out, I would likely have collapsed before even getting in the car. There have been too many times where I have made myself do stuff knowing full well I wasn't upto it & the impact is has on me is just not worth it.

The festive season is difficult for anyone suffering from (chronic) illness for various reasons. We have to try to rest as much as possible to enable us to get through & cannot join in the festivities like everyone else around us. We feel hungover when not so much as a drop of alcohol has passed our lips & the chance of a mad night out is a fine thing!

Having children at this time of year is extremely difficult as (for me anyway) you want to be doing fun stuff with them & have visions of going to Winter wonderland type places & doing things like ice skating & eating hot sugar doughnuts. The reality, if even well enough to get up out of bed in between resting, is being snuggled under a blanket whilst watching Christmas films & drinking hot chocolate. Which isn't all bad I suppose! But the way it makes you (me) feel when all you want is to be doing "normal" things is quite soul destroying.

My daughter asked if I was going with today & having to say no breaks my heart. Every time I miss out it breaks me a little bit more. Who wants to miss out on precious times where memories are made? This life is no fun.

Sorry for the slightly negative post, I just had to write while I am feeling like this. I don't want pity but this is the reality of chronic illness.  Us poorly people are some of the strongest & I wish I could give us all good health for the new year.

Never take for granted what you have & appreciate everything.

Lots of love & sparkle
ME Mummy A
xx