31/05/2015

MEAM: Round 'Em Up.

Seeing as today is the last day of my M.E. Awareness Month challenge i thought i'd do a little round up and a little ramble especially for you. It's been 31 days of constant posting and trying to keep up with Instagram and Twitter (and failing miserably). Man, am i wiped. When you take into account how ill i am at the moment, posting everyday probably wasn't the best idea, but a girl's gotta do what a girl's gotta do. The end of this month is bitter sweet for me, i loved posting everyday and connecting with you guys but, truthfully, it has made my health decline. Yesterday was a very emotional day for me, i'm pooped after a month of not one good night's sleep, my brain is frazzled and my body is shutting down on me. But, i've done it and boy, am i proud.

I've raised £281 on my Just Giving page and you can still donate which would mean so much to me. All the money you've donated goes to Invest in M.E. who put biomedical research into understanding more about M.E. and hopefully developing a cure to this terrible uncurable disease.

I've written a wide range of posts but there are a few that really got your attention and some that i just really loved writing. The most popular post i wrote was My Life with over 3000 views! I am so pleased that the post got so many views and shares at it was so hard to write and very hard hitting. I have very severe M.E. and life is extremely difficult for me and i'm so glad that i got this across, i've even been told that people want to show it to their Doctor's to show how badly M.E. can affect you. The post is basically just a description of what i go through every day and what it is like to live with severe M.E. And i'd like to say a special thank you to Tom for sharing the hell out of my posts and getting My Life out across the internet. Another post i'd like to mention is my interview with Katharine on living with M.E. and how her life has been over the part 7 years while living with a chronic illness. Katharine has been so supportive of me throughout this challenge and you just have to read our post. The final other post i'd like to specifically share is My Holy Grail, i think it will be extremely useful to other spoonies who rely on the little things to get them through each day. Again, if there's any items that help you survive then please comment and i'll add them in. You can read all of my M.E. Awareness Month posts here on the blog and by going to the archive on the left hand side of the blog and clicking on May. A quick mention that Charlotte from The Tea Drinking English Rose did an interview with me on her blog that you might want to take a peak at. And, Charlotte was absolutely lovely and wanted to understand M.E. better which was really kind.

We also hosted a giveaway and i promised to announce the winner today so well done to Jenny and i hope you love the Box of Sunshine as much as we did! 

I also thought i'd share a few of the things i've enjoyed reading from other M.E. bloggers, as without them i wouldn't have had the inspiration to start this blog and keep at it.
  • First of all, i think you should all go watch Hayley-Eszti and Meg's video Let's Talk About M.E. Unfortunately, i have been too ill and spoonless to watch this video yet but after a little while of proper rest it'll be first on my agenda. I have, however, heard very good things about it so have a watch of these lovely ladies.
  • Faye's lovely boyfriend Jared did a 3 part post series about their lives and finding the right balance between living and living with M.E. It's definitley one worth reading and it's actually quite an easy read too that Michael and i both enjoyed. Part 1. Part 2. Part 3.
  • I'm sure all of you in the online M.E. community are aware of the #May12BlogBomb and if not, it was set up by Sally from the blog Just ME to get as many posts on M.E. as possible for M.E. Awareness Day. There is a special May Blog Bomb post linking every single spoonie post written for it so you can have a read about M.E. from many different perspectives. And, well done Sally, for it beeing such a success!
  • Team Princess raised awareness in style when on M.E. Awareness Day many M.E. sufferers dressed up as beautiful princesses to raise awareness. They raised £5858.24 for a huge range of M.E. charities, incredible! Sian, the wonderful Princess who started it all, wrote a post featuring all the princesses that took part, a must read.
  • And last, but by no means least, i thought i'd include Sally's gorgeous Sleeping Beauty look that she did for M.E. Awareness Month when she wasn't well enough to go out and do all the prancy outfit stuff.
  • There was much much more than this going on in M.E. Awareness Month but obviously i can't write them all down. However, i wrote a post called Spoonie Love which includes all my favourite M.E. bloggers, where to find them and a few specific post links.
Thinking about this month makes me very emotional and i know i'll be remembering this month for the rest of my life and constantly redirecting people to all the posts i wrote. I can't say how thankful i am for every single word you've written to me, every tiny donation and every single view that this blog has had throughout this month. If you haven't read some of them, please do bookmark them to read when you have the spoons. And, i'll be replying to every single comment throughout the next few weeks so please check back to see my reply. There's been blood, sweat and tears put into every single word and post i've written, and now it's time for me to rest. There's still time to donate if you can and please don't ever stop reading. This blog is my lifeline and i love you all so much. 

30/05/2015

MEAM: M.E. & Passing On.

For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.

a page from the book 'Badger's Parting Gifts' my teacher gave to my Mum when my great-grandad died
I never know what to say, 'death' just sounds so horrible. But then, 'fluttering away' sounds waaaay too poncy! So, i'm going with passing on. Anyway, onto todays post (the second to last post of M.E. Awareness Month btw!). Death is not something anyone likes to talk about, yet it's a natural part of life that every single one of us goes through. It doesn't matter if someone dies young or has lived a full and exciting life, we all feel the heart wrenching pain of grief. But, waht about when you suffer from a chronic illness, that already leaves you completely drained, and you lose someone you love?

Last year, my step Nan died, I'm going to call her Nannie Beard as we always did, and i think it's obvious how she got the name. She had been feeling ill for a while and all of a sudden it got much much worse, she eventually collapsed and got taken into hospital where they told her she had lung cancer and that it had already spread nearly everywhere. But, we thought we moght have a little time with her before she left us. Unfortunately, we were so so wrong. She went into hospital, found out she had cancer and within 3 weeks she had gone. At first we thought she might come home for a bit and my Step Mum and Mum would care for her, then we realised this wasn't possible and we thought she might go to a hospice, and then we found out it just wasn't going to be possible and within a few days she had gone. I'm so glad i didn't leave it and say i'll see her when she comes home or in a hospice. Yes, when i went to see her she was completely out of it and couldn't put a sentence together, but i'm glad i got to hold her hand and tell her i loved her. Now, i really pushed myself to do this, and Mum told me i didn't have to worry about it, that she would understand, but, me being me, i just had to see her. Unfortunately, there wasn't time for any of us to really tell her how we felt about her and i wish that i could have so badly. But, i know it was even worse for my Step Mum. I think that was the hardest thing for me, not being able to help. I know i couldn't have done much but i've always been the one to try and make things better in our family and just making a cup of tea would have made me feel better. 

Now, my Step Grandad (not married to Nan) has just been told he has incurable lung cancer. Fortunately, he's got at least a few months so the family can go and visit him and spend time with him. Obviously, this just isn't possible for me and i am really struggling with it. But, this time, i have learnt that there are little things i can do to help and to have that connection. So here are a few little things i'll be/have been doing:
  • Send Cards - All of us spoonies love sending little notes to eachother so i'll be putting this habit to good use and sending little notes and cards. Not just to Grandad though, but all the family, in the hope it might make them smile and they'll know i'm thinking of them.
  • Send Little Presents - I know how much it cheers me up when i get a little surprise in the post so i know that he'll love to receive just a little something that will be relevant to him. Like this Box of Sunshine made by my lovely friend, we're also giving away one.
  • Share Your Unique View - Us spoonies have a unique view on coping with day to day life, especially those of us who are severely ill. They say that M.E. is similar to Cancer in many ways and i plan on using that to help out. For example, Grandad is having trouble just eating anything so i'm writing down all the things i find easy to eat, ways to sneak things in and extras that will help give him a little boost. It's given me a way to help and something to focus on.
  • Find Ways To Cope - It's obviously not going to be easy and you will get upset, but we can all find our own ways to get through it. With Nan last year, i found that just offering little things like watching the dogs or just sending little texts made it a little easier but this year, my severity has increased so i'm finding new ways. Last night, i was finding it hard and getting a little upset so i phoned my Mum (though this is extremely tiring) and just asked her about how Grandad was and how my Step Mum was feeling and just had a chat and it really helped. I just think it's so much better to let it out, if you hold it all in it will only get worse.
  • Tell Them - This one's a little tricky and it depends on your circumstances, but if you have that chance, tell them how you feel, talk about good memories and make sure they know you care. I'll be writing a little card for Grandad, as it's unlikely i'll be able to see him, telling him a few things and then he can read it when ever he's ready.
  • Try To Make Light - God, we're pro's at this! Last year, i missed all but 5 minutes of Nan's funeral because we got lost, in the same place, to the same place, twice. Yup. But, as my Mum told me, she would have been laughing her head off at me. And, when Nan couldn't remember the word for boyfriend when she was telling the Nurse who Michael was, Michael lept in and said body guard and it got a smile. And, last night, i said to my Mum and Michael that everyone's just trying to get out of coming to our wedding! The little things help.
  • Don't Feel Stupid - This is something i have real trouble with. 'What if they don't know how i feel?' 'What if i'm not really their grandchild?' What if no-one understands that i can't be there?'. I feel damn stupid all the time and feel like i'm not part of the family. But, as everyone tells me, everyone understands and i'm always a part of the family.  Most of all,  just want to give my Step Mum the biggest hug in the world and it's stupid that i can't just get up and do that.
I know that this has been directed at people who haven't died suddenly as i don't really have experience with that, but i think that most of these can be applied to that situation too. And, my main point is, don't hold it in and be there for eachother. Oh, and Macmillan Nurses are absolutely incredible! There will be two seats reserved at my wedding and they better bloody well be there.

29/05/2015

MEAM: Moving House.

 For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.
Moving house when you have severe M.E. is not fun. At. All. But, fortunately we kept our heads, planned well and had lots (and lots) of help. So, we thought we'd share a few tips we learnt from moving house with severe M.E.
  • Make Lists - This is such a big help! Moving isn't just about the packing and taking stuff from one place to another, there are loads of household duties (sorting out gas, electric, internet, etc.) to sort out. As you remember things just jot them down and you can work through them slowly with the help of someone else.
  • Lean On Others - God knows how we would have done it without the help of my family! My grandparents, step Mum and Mum all worked really hard to get everything done so i didn't have to stress and Michael could look after me and get started on packing. 
  • Know That Things Take Time - We've been living here 4 months now and still don't have living room furniture and have still got boxes piled up! But, when you're so ill those things don't matter. It's not like i can go into the living room anyway! Just take the things you need out of the boxes and leave the other stuff until you can manage it.
  • Don't Get Stressed - Ha! Easy for me to say. It's easy to feel overwhelmed and like everything's a mess, but things are going to be messy and there's nothing you can do about it. When you're so ill, all you can do is boss people about, and it's bloody hard to not be able to help. So, talk to people, say if something's bothering you and you can come up with a solution.
  • Take It Slow - We packed up for over almost a month and the flat was painted by my family over around 2 weeks. And, this must have worked because i actually didn't find moving all that stressful! It's good if you know in advance when things will be happening so you have lots of time to sort shit out.
  • It's Okay To Take Things Easy - No matter how much you're actually involved with the heavy lifting, moving is tiring. So, yes, you can eat crap food, like ice cream, because it's easy to get down and it tastes damn good. And, if you don't have the time, it's okay to let personal hygeine slip just a little. After all, it's what dry shampoo, deroderant and wet wipes are for.

28/05/2015

MEAM: Recipes for this Spoonie to Try.

We love a good recipe. When you have intolerances to wheat, dairy, bananas (!), fresh pineapple, white rice, onions, garlic and have trouble with sugar, you struggle buying ready made things. And, to be honest, I know what goes into homemade food (important for my anorexia brain and why I've always eaten natural) and it tastes so much better anyway. But, being ill also comes up when choosing recipes, it needs to be easy to eat and be full of goodness to help my sick body along. Michael makes 2-3 recipes a week, at least one sweet and one savoury. So, I thought I'd share a few of the recipes that are suitable for my intolerance and being so ill that we'll be giving a go soon. All of these are vegan and gluten free.

1. Bagels



27/05/2015

MEAM: Mango & Coconut Layer Chia Pudding.

For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.

Now, this post is going to be slightly wierd. I'm not a big fan of chia pudding. Shock horror. I think it has a funny taste and no matter what we do it just won't go so i suppose that's just what chia seeds taste like? Please do let me know if you have any clue, and if there's something off about our recipe don't be afraid to speak up! Anyway, i know many people would love this recipe and i loved it too, just without the chia ;) God, i'm talking absolute crap today! Its looks yummy and if you love chia pudding then you should definitely give it a go. It's so full of goodness, healthy fats and protein and will keep you fuelled. I also think chia pudding makes a lovely light summer breakfast, so snap up some chia seeds and get making.

Mango & Coconut Layered Chia Pudding
Chia Pudding Ingredients: 
1/4 cup chia seeds
1 cup almond milk
1/4 tsp turmeric
1/4 tbsp agave
Layer Ingredients:
1 mango
1 handful fresh coconut cubes
2 tbsp cashew butter
3 tbsp granola - i love this one but with agave syrup.
  • Mix up the chia pudding ingredients in a tub or jar and leave in the fridge overnight. When you wake up give it a good stir and if needed add a little more almond milk or add a little coocnut sugar if not sweet enough. Leave for a further 2 hours, sirring regularly.
  • In a large jar or pint glass, layer up the chia pudding with the layering ingredients and it's all done. I didn't use all of the chia pudding but it's up to you how much you want to use.

26/05/2015

MEAM: It's Okay If You...

For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.

source

  • Get angry and throw things.
  • Get confused and very stressed.
  • Need to use a commode.
  • Cry and just need a cuddle.
  • Get jealous of other people, even other spoonies. 
  • Have to cancel because you just can't do it.
  • Say no one understands.
  • Have more bad days than good.
  • Can't manage physio sometimes.
  • Just can't face the world.
  • Buy lots of goodies online.
  • Eat ice cream for every meal, just for one day.
  • Don't wash for weeks and weeks.
  • Rely on dry shampoo to feel even a tiny bit normal.
  • Have binge watched every episode of Big Bang Theory.
  • Don't change your pyjamas 3 days in a row. 
  • Tell people to be quiet around you while you rest.
  • Get over excited about post.
  • Need to have a good moan.
  • Want to give M.E. to someone else just for one day.
  • Wear sunglasses inside, you're not a douche.
  • Can't stand the sound of someone breathing.
  • Get tired at the thought of going to the toilet.
  • Can't speak to your family for weeks and weeks.
  • Feel like you know the presenters on This Morning.

25/05/2015

MEAM: Challenges.

For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.

Writing a post every day for M.E. Awareness Month is one of the hardest things I have ever done! Throughout this month I have regretted it at times and really struggled getting posts done, then sharing it all on social media to raise awareness. It's been a bloody tough one. But, we're on the last week now and I'm really excited to complete this goal, see how many blog views we've had and how much money we've raised. Michael and I are also going to be having a little celebration on Sunday, the last day of MEAM, with lots of yummy foods! Michael will be making this Blueberry, Lemon & Almond Cake which is 'everything free' so a healthy treat and we've bought some special fancy lemonade, and Izzy might get a sneaky bit of melon and cashew butter. She has posed beautifully for many photo's so... Maybe some of you could have a little treat along with us and share it on Instagram or Twitter, one final push and a little thank you from me to you for all being so great. Sorry this post is a little rambly, me, Michael and the pup have got a tummy bug so we're all a bit all over the place. But, we can do it. We should all give ourselves a pat on the back for even the tiniest of achievements, because, when you have M.E., every single thing we do is amazing. So, whenever you feel down or useless, think about all the challenges you face everyday, how you overcome them even when you can barely move, and know, that you do the most incredible things everyday, and we're all so proud of you.