24/05/2015

MEAM: My Holy Grail.

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.

As promised, my Holy Grail post! We all have those little things that get us through the day to day life of being a full time spoonie. And, I don't think I'd be half as good at surviving without them. So, here are mine:
  • Eye Mask - I don't know where i'd be without this. Sometimes it get annoying having something stuck to you face (especially when the hairs from our crazy maulting dog get stuck to it!) but you have to weigh out the pro's and con's. Obviously, apart from a couple times a week, Michael and i go to bed at different times so it's great to still be able to cuddle up to him whilst he's on the laptop but not get blinded by the light. I use it a lot in the day too, especially when full on resting. Also, we live in the brightest flat known to man (everyone else loves this but i don't quite think they thought it through properly :P) so at 5 o'clock in the morning the sun is blaring through our window like it's the middle of the day and i need the eye mask to keep me sleeping.
  • Heat Pad - Mine's a cat and his name is Poppit (pop it in the microwave! Geddit?). I've had problems with my bowels for the past 10 years, let alone the last 6 with M.E. pain on top of that, I need this little guy. He's also great for our bad temperature control as you can out him anywhere on your body and heat him to a temperature you prefer.
  • Thisworks Sleep Plus Pillow Spray - I Love this stuff! A few sprays on my pillow and I immediately feel completely relaxed. I prefer the strong stuff but if you're a little more sensitive they do a normal version too. And, you can get samples so I really recommended you give this a go.
  • Batiste Dry Shampoo - I use Batiste in particular as they are completely cruelty free. Seriously, I would be an absolute wreck without dry shampoo. My hair affects my confidence so much which means as long as my hair's okay-ish then I don't feel so minging. I can leave my hair a month using this stuff, although halfway through my head is super itchy but I have a very sensitive scalp. Just one whizz over my hair and I feel a little better.
  • Wet Wipes - I can't shower at the minute, it's just too hard so wet wipes are the key! When I'm getting changed all Michael does is give me a quick wipe down. I think the best wet wipes are when they're a little more wet/soaked so you feel that little bit cleaner.
  • Izzy - Ahh. I couldn't live without a dog now, they help my state of mind so much. I use Izzy as huge heat blanket, she just cuddles up against my body like in this blog post to keep me toasty. Her body heat really helps with my pain. Also, she knows when I'm having a really bad day and will stay close to me and keep trying to lick me.
  • Puss - Puss is the orange Octopus in the photo above and he's Izzy's bestest friend. All I have to say to her is 'go get Puss' and she will put him on the bed for me and wait until I can throw him for her. But, she'll quite happily play with him by herself by throwing him up in the air and chasing him! It's super cute.
  • Audible - I really thought i was going to hate not actually reading a book, i was the kid in school that when a book was being read out loud in class, i would ignore it and read it myself quietly and end up finishing book by the time they'd read the first chapter! But, i have adjusted and now actually love listening to an audio book. I have trouble completely resting becuase my head just buzzes so listening to an audio book is the next best thing. For Audible you pay £7.99 a month for use of the app and you get 1 free book token a month which i think is really good. I recently did a post on my favourite audio books so far.
  • My Mobile Phone - My phone is my connection to the outside world. That sounds so dramatic but so true! It allows me to use Instagram and Twitter to connect with other spoonies. I can talk to my best friend nearly everyday through text, pinterest and snapchat even though we're both ill and live in different counties! I use Audible on my phone to listen, spotify to relax with and i can text with my family when i can't speak. And, i even use the Tesco app to do all our food shopping, so i can help with someting and choose when is best to get it delivered.
  • Tumbler -I had a really really bad habit of spilling water everywhere, the amount of times i ended up sat in a puddle of water. No joke. But these are great! There is a little cap under the straw hole that closes when you remove the straw so you won't spill a drop. Easy Peasy. And, straws are needed when you can't lift a cup and have trouble swallowing. Michael uses these for my smoothies too as we know it holds a manageable amount for my little belly.
  • Gluten Free Oatcakes - As Katharine mentioned in our interview, crackers and the like are perfect for us spoonies. So, as i'm vegan and gluten free, oatcakes are the ones for me. I find these great to help with sickness (tip: add a sprinkle of ground ginger on top to help settle your stomach), i practically lived off of these in the two times i got gastroenteritis in the past nine months. I have trouble with not eating enough or my sugar so when i get a bit weak or dizzy due to food, Michael wacks a bit of cashew butter and cinnamon on top of a couple for me and they seem to do the trick. My favourite way to eat these as a dinner is to slab a bit of nut butter on them, then some nice low sugar jam and some chopped strawberries to top off. So. Good.
  • ASOS Pyjamas - ASOS don't sell my pyjamas in the picture anymore but there are a load in the same fit, just a different pattern. These are the most comfy pyjamas i've ever worn, if you go to Anna's Instagram you'll see that she agrees. They're really soft, oversized but not excessively and wash really well.
  • Huge ASOS Jumper - I love me some jumpers. Before i got ill, i went to the beach with my Mum and her patner but i got so cold that i had my own jumper on, my Mum's on top of that and Terri's on top of that. Everyone else was in bikinis! Anyway, you can't beat a big comfy jumper to snuggle up in, and layers are great with temperature control too. I bought the jumper above (the link is for a similar one with better sizing) 2 years ago now and even in the smallest size, you could fit 3 of me in it! I absolutely love it though, and i'm never throwing it away. Never.
 And, here are few that others have told me about:
  • Peppermint Essential Oil - My best friend says this is great for headaches, all she does is rub a bit on her forehead/temples/upper lip/pulse points and it helps relieve the pain.
  • Accupressure Mat - She also says that she finds this great to help brain fog or when her mind is going absolutely bananas! Also, great for pain. I'll be trying one of these so i'll let you all know how i get on.
  • Bike Phone Holder - One lady told me that she attaches a bicycle mobile phone holder to her bed rail so that she doesn't waste energy trying to hole her phone up.
  • Remote Control Plug Adaptor - I was told that you could buy these so that if you can't get up to turn things off, all you have to do is point the remote! Definitely a good idea for those of us that are alone a lot.
  • Kindle - Someone mentioned this, and before i got severely ill i loved mine. At first i thought i'd hate it and miss the feel of a book and the smell of it's pages but i actually really liked it and it got so used that eventually it just died on me! It's so light and you can get stands for them too, so if you do have the energy to read, it's a great buy.
That's it. But, I'd love if you shared your own Holy Grails in the comments, we always love hearing from you.

3 comments:

  1. That bottle looks genius, I have to have bottles so that when I spasm I don't break anything or spill anything.
    I'm also OBSESSED with a kind of dry shampoo you can get on disabled equipment websites that comes out just like regular shampoo but you don't use any water, you can also get body wash of it. I use it all the time (showering is HARD!).

    Sally xx

    P.S. i used to have an acupuncture mat & loved it although I stupidly let my brother borrow it & it vanished never to be seen again :S x

    ReplyDelete
  2. Great post I'll definitely be checking some of these out :) as a newly diagnosed ME sufferer I am still discovering new things to help me but at the moment I am loving aromatherapy associates bath oils (for when I have the energy to bathe), especially "breathe" and "de stress muscle" ones. I'm also using a 1 step cleansing conditioner which makes hair washing quicker and Tiger balm and 4head for aches and pains :) totally know what you mean with the nausea, sometimes almond butter is the only thing I can stomach! Really enjoyed your posts for MEAM :) xx

    ReplyDelete
  3. I forgot when I mentioned the remote control sockets that I use it mostly for the fan. Fan goes on... fan goes off... fan goes on... It's the bog standard floor standing 3 speed fan, generally runs about £15-20, and I use it year round due to temperature fluctuations and hot flashes. I also find it useful for white noise when my tinnitus is really bad. If my fan died, my husband would probably have to go out to Asda that night to replace it. So it definitely deserves a place in my holy grails.

    ReplyDelete