5 Things I'm Grateful For Now I'm a Spoonie

Getting ill and becoming a spoonie has changed quite a lot of things in my life. In fact it's changed pretty much everything. It changes your perspective on life, your goals, hopes, dreams. Everything. Since becoming a spoonie, I have become grateful for things that I never really thought about before. These things have always been there but only since getting ill have I learnt to appreciate them. 

So I wanted to share with you 5 things I have become grateful for since becoming a spoonie. 

1.) Benches in Public - When I'm not using my wheelchair, I depend on there being a bench near by so that if I come over really poorly and need to rest for a bit, I have somewhere to sit down. I never really thought about this before I got ill but now I am aware when there aren't any. If there aren't any benches and I do feel really dizzy or ill, I have to make do with sitting on the floor (and getting off looks from strangers). 

2.) Having really thick hair - my hair is really thick (and long) and this comes in handy because it means I can go longer without washing it. If I had really fine hair, I would have to wash it more often and washing my hair/showering is tiring for me so I'm grateful my hair still looks fairly decent even if I haven't washed it for a week or more. Anything that saves spoons is a plus. (Along the same lines - I am so grateful for dry shampoo too!) 

3.) Having a back garden - being able to sit outside in my back garden is really great for me and I know that some spoonies don't have one so I feel lucky that I do. I love the fact that I can go into my garden and it feels like I'm going out but I don't have to get dressed or worry what I look like - I quite often go in the garden in a dressing gown-coat-boats-pyjama combo which is always a flattering look but hey, it doesn't matter because no one can see me! A change of scenery is always good and fresh air always makes me feel better. 

Also I am grateful for where I live. Living somewhere fairly quite really helps when it comes to resting. Outside sounds really make a difference when you are trying to rest and I am also grateful that I live fairly near to some shops, my doctors surgery and my family so I don't have to travel too far. Not only does this save spoons but it means I can go out and do things more often than if these things were far away.

4.) Having a car - I'm not well enough to learn how to drive but I'm really glad both my parents have a car. Public transport would be extremely difficult for me and would mean that I wouldn't be able to go out nearly as much as I do. I feel like using public transport would also add a lot more stress and anxiety to my trips out. This also means that I can come home if I feel ill and don't have to wait for the next bus or train. I can go on drives and do what I want to make myself more comfortable, whether that's having it quiet, no music and no radio or wearing what I want aka an odd combination of things/pyjamas or taking a hot water bottle with me. I've always been grateful that we have a car but now even more so. 

5.) The Internet/social media - I've really become dependant on the Internet in general, especailly Twitter, Instagram, Pinterest, Youtube and blogs. I have found the majority of information on M.E online and reading other sufferers blogs and getting to know them has been really helpful. Going online is a great way to feel like you are interacting with others when you're not actually well enough to go out and about. The spoonie community is honestly amazing and everyone so supportive of each other. I have made so many amazing friends through Twitter and Instagram, people that I have gotten to know really well and talk to them every day. I don't know what I would of done without my spoonie friends. I also like to watch YouTube videos and read blogs too. This is something I can do from bed and I find it useful to be able to distract myself or cheer myself up. YouTube videos are generally shorter than television programmes too so I find that they are good when I'm not feeling so great. I mainly watch beauty videos but I like vlogs too, especially ones where people are going on holiday/travelling so that I get to see a bit of the world without leaving my bed! Pinterest is one of my favourite places too, I like the fact that it's just pictures so you don't need to be feeling that great and don't need to be up to reading - which is good when brain fog strikes! I like thinking about things like what I would have if I ever got married, pinning pictures of wedding dresses, home interiors, positive quotes, places I'd like to travel to, things I want to bake or try. Or even just pretty things I like the look of. 

Those are just some of the things I'm grateful for since getting ill - I'd be here all day if I mentioned everything but I might do another one of these soon. 

What things are you grateful for since getting ill? 

Book Recomedation: One Million Lovely Letters

Something a little different from me today, I don't usually do book reviews, this isn't really a review anyway, more of a recommendation. The book in question is One Million Lovely Letters by Jodie Ann Bickley. I first found out about Jodie about a year ago on Twitter. Then last autumn, I heard she was on Surprise Surprise so as a fellow ME sufferer, I tuned in to find out more about her and her project, One Million Lovely Letters. [You can check out the site here]

After hearing her story I immediately fell in love with her and put her book, One Million Lovely Letters on my Christmas list. I was lucky enough to receive it and last week I started reading her book. It only took me two days to read it and is fairly short but I really really enjoyed reading it and found it uplifting and inspiring yet interesting, entertaining and easy to read. 

I found it really relatable too, not just because we both have ME but because she really is just an ordinary girl with a very big heart who wants to make people happy and the world a better place. 

I won't give away any spoilers, you'll have to read the book yourself (!!) but I think everyone could learn something from Jodie's story, whether you have the same illness or not. 

If you've not already read this book, I wholeheartedly recommend that you grab yourself a copy and give it a read.

Have you read One Million Lovely Letters? If so, what did you think?

I'm Back!

Sooo.. It's been a while. As you all know, this illness is unpredictable and it sure has been kicking my butt the past few weeks. The end of 2014 wasn't great for me. For the past 8 years I have suffered from bad anxiety and at the end of 2013 I made the decision to come off of my anxiety medication. All was going well anxiety-wise until October last year and it just got worse and worse from there onwards. This is definitely the worst my anxiety has ever been and I'm not sure why it came back, I think maybe me not being at college had a part to play in it but I guess we'll never know. I was having panic attacks at least once a day, having nightmares, not eating properly and not sleeping well at all. I mostly get anxious during the night and I think because it's winter and it is darker for longer, my anxiety is around for longer too. I'm not sure what it is, the dark just makes me feel more closed in and claustrophobic. 

In December I went back on my anxiety medication and I think it's finally starting to work, I'm definitely feeling a lot more relaxed and sleeping better. My eating isn't back to normal but I think that could just be my M.E. 

Sidenote: I'd just like to point out that before I started taking medication again, I tried a lot of other things, meditation, herbal tea, herbal tablets and remedies, aromatherapy, relaxing baths etc. 

Being chronically ill has suddenly really got to me. Maybe I took it too well to start with and am now having a delayed reaction? I'm not sure but Christmas Day was one of the worst days ever for me, in hindsight I shouldn't of done so much beforehand (I had a friend round on Monday, doctors on Tuesday, Christmas Eve busy-ness on Wednesday so naturally on Thursday I was pooped). I had been feeling pretty bad for the past couple of weeks. 

On Christmas morning I went downstairs to open my presents and have breakfast, all was fine, I mean, I felt ill and was exhausted but I thought I'd be okay. After presents I needed to go back upstairs to rest and this was when it got bad [just writing/thinking about it isn't nice]. My heart started to beat really fast, which for me is a sign of total exhaustion. I lay in bed for about half an hour before I felt like I was going to be sick so made my way to the bathroom. Two hours later and I was still sitting on the bathroom floor feeling sick, weak, exhausted, dizzy and many more things, I'd be here all day if I listed everything! I soon realised that I wasn't going to feel any better any time soon so had to make the decision to stay home whilst the rest of my family (apart from my mum who stayed with me). At the time, I honestly didn't care that it was Christmas Day, I just wanted to feel better so went to bed to rest. 

I can honestly say Christmas Day was one of the worst I've ever felt. I was so nauseous, it was painful and I am now so gutted that I missed out on christmas - anyone who knows me, knows how utterly obsessed I am with christmas! I was extremely light sensitive too (hence the glasses) 

For the past year me and my mum have been planning my dad a surprise birthday party for his 50th birthday which was on New Years Eve. The party was at home and I managed it quite well but struggled a lot with being around a lot of people and it being really loud. I was downstairs for a little while, perhaps not as long as I would of liked but considering how I was on Christmas Day, I'm pleased with what I managed. 

I've never really faced anything before that determination and hard work didn't fix so it's quite hard to still be ill and struggling after 4 years. Especailly when family members make comments about 'how long this has been going on for' - as if I'm not aware of it myself!

I've been feeling down because last year I managed so much at Christmas and even in January, I managed quite a lot too. It's upsetting to of gone backwards and hard not to compare previous years - even though I try not to!

So, that's what's been going on. I feel like I went quite deep there! (Lol) I am now getting back on track (slowly) and feeling a lot better than I was. As far as New Years Resolutions go, I haven't really made any apart from to keep up with the little bit of walking I've been doing with my mum every evening. Don't get too excited, it's not much, just down our road a little way but so far I've been doing it for 3 months and have only missed a few really bad days. 

I've also been trying to introduce some stretching back into my routine as my legs have been feeling extra sore. Back in the summer/autumn, I was doing some more exercises suggested to me by the lady I saw for physio so ideally I'd like to build back up to doing that again (although I'm in no rush). I'd also like to give yoga/Pilates a go and meditate more during 2015. I've been using this video as a guide for stretching. 

Hopefully I'll be blogging a bit more regularly now, and I'll be sure to keep you updated if anything exciting happens. 

Let me know if there are any posts you'd like to see me do, I'd always love some more ideas. 

Lots of love, Chloe x 

Positivity

It's sometimes hard to stay positive especially when being a spoonie means there is so much you can't do. Something I like to do when I feel down is to go onto Pinterest and either look at some of my favourite quotes and sayings or to try and find some new ones. 

Here are a few of my favourites, I hope they brighten your day and bring you happiness and positivity. 

Chloe xx 

An Autumn Walk

This morning we went for an autumnal walk at a country park near where I live. Here are a few pictures I took...

Chloe xx 

Things Lately

I try to keep my blog as happy and positive as possible and I like to think that I've come a long way where positivity is concerned but recently I've been feeling a bit stressed and a bit lonely too. Since finishing college, it upsets me that I don't really have any friends my age that I am able to meet up with often and although I have friends that I have met through Twitter, I would love some friends that live near me.

I feel really stressed about what I'm going to do in the future job/education-wise. I also feel really anxious about it and like I have no purpose sometimes. It scares me to think too far ahead to the future so I try to take every day as it comes. I don't feel like this as much as I used to but it's a big change not to be in education and not to see people my age and is something that is hard to get used to. I'm scared about never having a job, or being able to go back to education, never having friends or being able to do the things I want to do. I'm worried about what people will think if I'm not at college or working and it's making me so stressed. I feel like I need to have a plan but I don't and I really can't find anything that suits me which is so disappointing and disheartening that I can't do what I want to do. 

Don't get me wrong, most of the time I'm happy and positive but it's hard to be like that all the time and it sometimes gets to me. I try to apprieate the little things but it's really hard to see everyone else my age starting to drive and looking at uni's when I can't even walk too far or go shopping without suffering and being in a lot of pain afterwards. 

Chloe xx 

Dover Castle and Beach Adventures

A couple of weeks ago, I had a busy week and managed two full days out the house. The first was a trip to Dover Castle. 

Pondering over the meaning of life in the Abbey...

I climbed a LOT of stairs which was extremely difficult and painful but the view was worth it, do you think? 

 

Two days later we went to the beach for the day....

Typical English weather, the sky was very grey and so was the sea! 

I expected the second day to be the hardest and I thought I would feel worse because I would be suffering from payback from the first day but actually it was the other way round. The first day, I felt absolutely awful and didn't think I would make it out the car at first, let alone up the castle and I'm super proud of myself for how much I managed and how much walking I did, even if me and nan got left behind a lot! One thing I wouldn't recommend doing if you have ME/Fibro and are visiting Dover is going in the war time tunnels. We thought we'd just be wandering through but it was a guided tour and we had to walk super fast down slopes and there were automatic doors that closed behind you if you didn't move fast enough which was really horrible and I struggled so much. You couldn't drink down there either (although I did have to in the end because I felt awful and like I was going to pass out) and the tour was 45 mins so quite long and draining. There are also a lot of loud sounds, moving pictures and flashing lights so if I had know it was like that, I definitely wouldn't of gone! Silly me for not researching it properly beforehand. 

Both days out were super cold and freezing! Where has summer gone? I really enjoyed sitting relaxing on the beach though (even if I did look a bit of an idiot wrapped up in loads of layers including some of my nans clothes - lol my life is so elegant!). The beach is one of my favourite places to go, it's a shame I probably won't get to go until spring next year! 

I hope you enjoyed reading about some more of my adventures, I love sharing them with you all! 

Chloe xxx 

 

My Holiday - Part #4

Friday was our last day - boo! We went back down to Brixham and went on a boat ride to Torquay (and back!)

I don't look happy but I promise you, I did enjoy it! It was just VERY cold! 

(My mum will kill me if she see's this... - oops!) 

The weather wasn't so great, it looks really grey and cloudy! 

 

 

Cream tea #2, I remembered to take a picture this time! 

In the afternoon, we went on a Steam Train ride. 

 

 

 

  And that was then end of our holiday! I hope you enjoyed seeing what I got up to. Going out every single day certainly took it's toll on me and my body was not happy at all, it took me a few weeks to recover afterwards but I think I'm finally getting back to 'normal'. 

Chloe xxx