May Monthly Round Up

A collection of my favourite things from the month of May

I can’t believe another month has gone past and we’re already nearly half way through the year. Where does the time go?! My month has mainly been taken up with having to rest or go to medical appointments, which isn’t ideal, but I’ve been finding ways to keep myself occupied in between. Something I’ve been doing rather a lot of is online shopping, both for myself and gifts for other people. Is it just me that loves choosing things to give to other people; thinking about what they like and hopefully how much they will smile when they open it? My bank probably isn’t too happy with me this month, but I’ve had a lot of birthdays to buy for, and have needed some cheering up too, so what better way to do it than buying pretty things?! One of my favourite buys this month is this beautiful lace day dress from Next. Is it possible to fall in love with a dress? If it is, then I’ve definitely fallen in love with this! I’ve been looking for a lacy dress for months but have struggled to find one with a nice shape and the right about of lace. Last week though, an e-mail popped up in my inbox from Next, showing this dress among other things, and I knew I had to buy it. Thankfully I could get it sent to our local store for free, rather than paying home delivery, and my lovely Mum kindly picked it up for me.

I’ve you’ve read some of my previous posts you’ll know that I enjoy arts and crafts and have been trying to teach myself to crochet. I’m getting there slowly, although finding it difficult because my hands get quite painful, so I’ve been looking into other arts and crafts I can do as well. I’m hoping a friend will teach me to knit when she comes home from Uni soon, so I’m really excited about that. But I’m also hoping to take up some sewing and also get back to making cards and doing some scrapbooking, which I used to do a lot of. I’m gradually clearing out my room for redecorating, so will be organising all my craft materials to make them much more accessible. I’m hoping that by doing that I’ll be more inclined to use them, as I won’t have to go searching through everything to find what I need. This month I’ve picked up a couple of magazines to inspire me, so I’m looking forward to browsing through them and hopefully starting a few projects. If anyone has any suggestions for arts and crafts, can recommend any magazines or websites, or who has any materials they no longer need, I’d love to hear from you!

As I mentioned, I’ve been gradually clearing out my room this month so we can redecorate it. I’m so excited about changing it all around, as it’s not been done for ten years, so currently feels like my teenage room. I’m looking forward to creating a more grown up sanctuary where I can relax and chill out. While I was tidying up, I came across a box full of my old diaries. I’ve kept a diary since I was about 8 years old, and still write in one every night. I can’t imagine not doing it any more and find it really helps to have a place where I can jot down everything that’s going on in my head. It was really interesting flicking through my old journals and I came across a whole variety of topics. From funny escapades I had with friends as a young child, to going through hospital admissions and health issues as a teenager and young adult. I don’t know if, one day, anyone else might read my diaries, but to be honest I write them for me, not for someone else to read through. I’d love to hear if you keep a diary and if you do, how long you’ve been keeping one for.

The final thing I’ve been up to this month is collecting teas. Now, this may sound rather odd – after all, who collects tea?! But this has been all in the name of blogging, as I’m planning a post a bit like the one I wrote about hot chocolates, but this time searching for the best cup of tea. Some companies have been amazing by sending me samples to try out, but I’ve also bought quite a few different teas as well. I never thought I’d be so thrilled to get a delivery of tea in the post, but when this gorgeous box of tea samples from Teapigs arrived I actually let out a little squeal of excitement! I chose to buy the pick and mix box, which meant I could choose 12 different teas to go in my box. I’m really looking forward to trying all the different flavours, as they sound so yummy, especially the chocolate flake and Crème Brulee.

Things I’ve learnt this month…

+   Sometimes life likes to remind you that it isn’t fair

+   Having to crawl round the house because your legs are so painful is pretty hard to deal with

+   Feeling sick all the time is incredibly tiring

+   Baking is very therapeutic

+   I’m definitely too impatient

+   The future can feel very scary, especially when you’re chronically ill

+   Sometimes things can just get too much

+   It’s terrifying when it feels like the past is repeating itself and there’s nothing you can do to stop it

+   I don’t know what I’d do without my family

+   The simplest acts of kindness can actually mean the most

+   Sometimes you just need to step back from the world and focus on getting through each day

+   Focussing on the little bits of happiness can get you through anything

+   Making the perfect poached eggs makes me happy

+   I think I may be related to magpies – I love a bit of sparkle!

+   I always underestimate the time and energy it will take to do something!

+   Sometimes it’s best to go with your gut instinct

What to look out for in June

As you’ve probably gathered by now, I enjoy watching films both in the cinema and at home. I’m always keeping an eye out for DVD releases and next month I’ll have my eye on two releases. First is Delivery Man, which will be released on 9^th June and stars Vince Vaughn. I wasn’t well enough to see it in the cinema at the time, but a friend of mine saw it out in Dubai and said it was hilarious. I’m a fan of Vince Vaughn anyway and usually find his movies funny, so I’m looking forward to seeing this. The other DVD that I’m especially excited about next month is TinkerBell and the Pirate Fairy, which is due for release on 23^rd June. Now, you might think this is a little immature for a grown lady, but I’ve never got over my love for Disney, especially TinkerBell! One of the goals on my Bucket List is to collect all the Disney films, so I’ll definitely be putting this on my list to add to my collection.

I’m a big fan of perfumes and like to spritz myself with scent every morning, no matter if I’m going out of staying at home. I’m especially taken by the Marc Jacobs perfume collection, and am always keeping my eyes peeled for new editions. I often lose track of the perfumes when different editions of scents are released, such as the Daisy collection, but tend to notice when a brand new fragrance is introduced. Thankfully though, I came across the plan to release a new edition of the gorgeous Honey perfume, which will be called Pink Honey. I’m already using Honey and I love the scent, so I’m excited to see what Pink Honey smells like. Pink is my all-time favourite colour, so I’m hoping it will make the scent even nicer!

Thinking about films, June seems to be another month for great cinema releases. Unfortunately, I’m not well enough to get out to the cinema at the moment, so it looks like I’ll have to wait for these films to come out on DVD, but I thought I’d mention them so you can keep up with what’s coming out. I always love a good musical, and on 13^th June, Walking on Sunshine comes to our screens. It showcases some of the greatest hits from the 80’s and by the end of it you’ll be singing along with the rest of the audience! Another film that I’ve been waiting patiently (or not!) for is The Fault in our Stars, which comes out on 20^th June. If you’re yet to read the book, I would definitely recommend giving it a try (as well as the other books John Green has written), as it’s a lovely story, which is bound to leave a tear in your eye. I’m keeping everything crossed that the film will stay true to the book and be a beautiful adaptation of a story detailing the journey of two teenage cancer sufferers. After the seriousness of The Fault in our Stars, you’ll probably be looking for something light-hearted. If you haven’t seen Mrs Brown’s Boys on BBC1 then where have you been?! I can’t get enough of it and haven’t laughed out loud at a comedy so much in a long time. This is why I’m particularly excited for the Mrs Brown’s Boys D’Movie, which comes out on 27^th June. It’s set to contain hilarity and fun, leaving you in stitches from start to finish.

June brings with it better weather (hopefully) and the chance to take part in the Cancer Research Race for Life. I’m not able to do it this year, which I’m really sad about, as I’ve done it twice now, when I’ve been having a better period with my health, and the atmosphere is just amazing. I’m not a runner by any stretch of the imagination, but I never felt out of place. Women of all ages and skill take part – some run, some jog and some walk. It doesn’t matter how you complete it, it’s the taking part that counts and as long as you’re raising money for a good cause it really doesn’t matter how you reach the finish line. On the day all you can see is a sea of pink and reading the stories pinned to everyone’s backs is so humbling. I’m hoping there will be a time when I’m able to do it again, but for now I’d love to hear if you’re planning to take part.

When my sister and I took part in a Race for Life

When I was thinking about what to look out for next month, I came across a website that contained information about all the awareness days throughout the year. So, I had a browse through June, and found out that it is National Picnic Week from 16^th-22^nd June! Hopefully the weather will start improving and we can get outside with friends and family to enjoy picnics. I had an e-mail recently saying I’d won a picnic basket, so I’m really excited for that to arrive to help me celebrate Picnic Week!

Do you have any favourites or things you’ve learnt in May? What are you looking forward to in June?

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30 Things

A friend of mine recently posted her adaptation of 30 Things about her Ehlers-Danlos Syndrome, and I thought it was a great way of answering some questions about illnesses that aren’t talked about enough. I’m focusing on both physical and mental illnesses, as they are all just as important as each other. With it being 30^th May, I thought it was the perfect time to post 30 things about my illnesses that you may or may not know.

1. The illness I live with is: M.E, Clinical Depression, Atypical Anorexia, Borderline Personality Disorder and I am being investigated for a Connective Tissue Disease, possibly a type of Ehlers-Danlos Syndrome.

2. I was diagnosed with it in the year: M.E – 2003, Clinical Depression and Atypical Anorexia – Roughly 2004/2005, Borderline Personality Disorder – 2013 and am being assessed now for a Connective Tissue Disease/EDS.

3. But I had symptoms since: Birth for some symptoms such as dislocations, pain etc. M.E symptoms became particularly apparent in 2003. Mental Health problems came in about 2004.

4. The biggest adjustment I’ve had to make is: This is a bit of a difficult question, as my symptoms have gradually become apparent, as I’ve gone through my life. When I was a baby I had to have the brace fitted for my hips, so my parents had to adjust the way they looked after me. I’ve had to adjust the way I approach things like studying and work, by pacing myself and perhaps taking a different route to get qualifications using ways that suit my needs better. With regard to mental health problems, the only adjustments I really have to make is ensuring I follow a meal plan and being able to voice when things are getting difficult to try and keep myself safe.

5. Most people assume: That if they see me doing something ‘normal’ or eating something then I must be better, or if I look ‘well’ that I’m not struggling. What they don’t see is how I am at home, either struggling with eating or my mood, or when I’m having to rest/crawl up stairs/have someone help me to wash, just so I could do that normal activity. I’ve also had people assuming I’m lazy because I can’t always do things that others do. And there have been a lot of assumptions that all my symptoms are in my head, when I do also have physical problems.

6. The hardest part about mornings are: Being able to push through the pain/nausea/sickness and dizziness to actually get up and take my medications and then try and eat some breakfast. It takes me quite a while to actually feel half decent, but I don’t always have the luxury of time, so if you see me in the morning and I’m not very chatty, it’s usually because I’m trying to keep myself standing!

7. My favourite medical TV show is: I enjoy watching Casualty and Holby City, although I annoy my family because between my brother (an Emergency Care Assistant) and I, we are always pointing out mistakes in how they deal with various illnesses and equipment. If I want something more lighthearted then Scrubs is always a good bet. I also loved 24 Hours in A&E and occasionally will watch House.

8. A gadget I couldn’t live without is: Probably my phone as it allows me to keep in touch with friends and family, which is especially important when I’m not well and need a parent to come and help me! I also put reminders on my phone for various things, which is a lifesaver as my memory is terrible!

9. The hardest part about nights are: The fact that I’m alone. For some odd reason symptoms seem to be worse at night – be it pain, nausea, shaking, dizziness. My Mum will often stay up with me, but there’s not much she can do apart from sitting with me, so I’ll tell her to get some sleep, as it’s not fair to keep her up. Mental health symptoms can also get worse at night, and if my insomnia is bad then nights can feel like they’re dragging on and my thoughts are racing, while I try to make myself sleep!

10. Each day I take __ pills: It can vary a lot depending on the symptoms I am experiencing and how severe they are. I don’t like taking medications, but a lot of the time there isn’t much choice because if I didn’t take them I’d feel a lot worse. Currently I think I take roughly 20 tablets a day.

11. Regarding alternative treatments I: Am willing to try alternative therapies, as long as they don’t make me feel uncomfortable. I know that some people swear by them, and I think it’s great if you can find something that alleviates symptoms, but so far I’ve not had much success. The only thing that does help me is massage, but unfortunately I can’t afford a personal masseuse!

12. If I had to choose between an invisible illness or visible I would choose: That’s a bit of a difficult one, as I’m in two minds about my answer. In one respect, if I had a visible illness then people might actually believe me that there is something physical wrong with me, but then I know even people with visible illnesses face judgments and prejudice. Having an invisible illness can be preferable because you can choose who you tell about it to a certain extent. A lot of the time I look completely healthy, which has certainly been helpful at times when I’ve not wanted people to know I struggle with health problems. When I’ve been using a wheelchair I often get looks when I stand up and walk a bit – people assume that if you’re in a wheelchair you have no use of your legs, but actually only a small minority of wheelchair users are completely paralysed. The biggest thing I hate about times when my illness is more visible (like when I use a wheelchair) is that a lot of the time, people treat you like a second-class citizen. They talk about you to the person pushing your chair and look at you with pity, which is just awful!

13. Regarding working and career: I’ve had to make sacrifices with work and my career because of my illnesses. I originally wanted to be a doctor, but, for no want of trying, I just haven’t been well enough to do the intense studying and long hours to qualify. I have been able to work sporadically, and when I’m not able to I genuinely miss it so much. I don’t like not being able to provide for myself and feel incredibly guilty for relying on other people. Career wise, I’ve had to think about what I liked about the idea of being a doctor, and then look into other careers that would allow me to meet some of these goals and dreams. I’m currently hoping to study as an Occupational Therapist, but I know it’s not going to be easy.

14. People would be surprised to know: Blood tests still make me faint! I’ve lost count of the amount of blood tests I’ve had, and I have no problems with seeing blood, or even watching others give blood. I’d even happily watch my own blood tests, but for some reason my body just can’t cope with them and I pass out. It usually happens when they can’t get blood straight away and have to wiggle the needle around, so I now lie down before we start. I once fainted in the middle of the hospital reception, and, despite there being doctors and nurses wondering around, it took a receptionist to come over and help me!

15. The hardest thing to accept about my new reality has been: In a lot of ways this isn’t a new reality, as I’ve had difficulties since I was born. Although I guess in the first few years of my life they didn’t affect me too much and I lived a relatively normal life. When my health took a nosedive at 15, that was when I was faced with this new reality, and it took me a long time to accept that I may never feel well again. Ten years on, I still struggle with my diagnosis, because for a lot of my symptoms it doesn’t make sense, which is why I’m still fighting for the correct diagnosis. But I have accepted that I am different from my healthy friends. However, I have also accepted that this doesn’t mean I can’t do things I want to do. Yes, there are some things that would be incredibly difficult, but the vast majority of my goals are still achievable, with some little adaptations.

16. Something I never thought I could do with my illness that I did was: Feel confident. I’ve always been a very shy person and hated having to stand up in front of the class at school. I’d do anything to try and blend into the background and not be singled out by the teacher. Even when I first became ill, for a while I tried even more to blend in because I hated people making comments about me. But over the last few years I really feel that I’ve become more confident, and I think a big part of this has been that I’ve accepted my illnesses and stopped blaming myself for having them. I’ve now done an article in Cosmopolitan, where I went to London on my own for a photo shoot – I never used to do anything on my own! I’ve been asked to do radio, but unfortunately haven’t been well enough yet, and I’ve started my blog. I’m even planning to branch out to vlogging now. In my opinion it is so important to talk about these illnesses to help people understand them, but also to help others who are going through them.

17. The commercials about my illness: Are pretty non-existent! The only adverts I’ve seen about M.E are posters produced by charities, which is a real shame as I think it would be amazing to see some TV advertising to try and break the misconceptions about the illness. The same goes for EDS. There are some adverts about mental health problems, which are usually fairly good, showing normal people with a few words about what they struggle with. I like these adverts because it shows that anyone can suffer from mental health problems.

18. Something I really miss doing since I was diagnosed is: Dancing. I used to dance nearly every day after school – ballet, tap, modern and street dance, but since my M.E surfaced I’ve not been able to do it. I did try when I had a good period, but even then my balance, dizziness and pain made it incredibly difficult. The only dance that I could probably cope with would be some gentle ballet exercises, as I’ve found gentle stretching can be helpful.

19. It was really hard to have to give up: My dreams of being a doctor. I’m not sure it is something I will ever truly get over, but I’m starting to accept that it just wasn’t meant to be. Saying that, my illnesses have opened so many doors that never would have been opened without them – I’ve made some amazing friends and had some fantastic opportunities, so I wouldn’t change what has happened.

20. A new hobby I have taken up since my diagnosis is: Crafting and blogging! I’ve always been an arty person, but it was only when my health took a nosedive that I started doing more crafts like card making and scrapbooking. It’s nice to feel like you’re achieving something when it’s been difficult to do so in other areas of your life. Blogging is something I only took up fairly recently, but I love the fact that I can be part of a community where I’m not judged by my illnesses. I’m also teaching myself to crochet and knit, although finding it hurts my hands quite a lot at the moment.

21. If I could have one day of feeling normal I would: Organise a full day of activities and then stay up to watch the sunrise. I’d meet up with friends, go shopping, perhaps go to a theme park and eat out in a restaurant without feeling ill. In the evening I’d perhaps go clubbing, as that’s something I’ve never been able to do properly, without having to leave early. Then in the early hours I’d drive to the beach to watch sunrise.

22. My illness has taught me: Who my real friends are. This was quite difficult, as I had friends who I thought would be there for me, and then they weren’t. I’m not going to lie and say I accepted it, because to be honest it still hurts, and it still happens now. But I do know that the friends that have stuck by me are the most amazing friends I could wish for. Being ill has also taught me not to take things for granted. Even little things, like being able to wash my hair or go for a little walk feel special to me now, because there have been so many times I haven’t been able to do them. It’s made me look at the world through different eyes.

23. Want to know a secret? One thing people say that gets under my skin is: You’re being lazy/it’s all in your head. I find it so frustrating when my physical symptoms are blamed on mental health problems – I know my body and I know I have both physical and mental problems, I just wish other people would understand that sometimes and support me. I also get infuriated when people imply that I’m lazy, because if they really knew me they’d see that I am far from lazy.

24. But I love it when people: Accept me for how I am and accept that I know my body more than anyone else.

25. My favourite motto, scripture, quote that gets me through tough times is: There are so many lovely quotes that help me get through life, but these are a few of my favourites:

“It will be alright in the end. If it’s not alright then it’s not the end.”

“Of course it is happening inside your head, Harry, but why on earth should that mean that it’s not real?”

“Happiness can be found even in the darkest of times, when one only remembers to turn on the light.”

26. When someone is diagnosed I’d like to tell them: To take one day at a time and not stress about the future. It’s advice that I should take on, but worrying about the future will only make you feel worse. Sometimes it is just enough to focus on getting through each day. And never feel ashamed of your illness because it is not your fault.

27. Something that has surprised me about living with an illness is: The amount of competition between some people with illnesses. I’ve never understood the whole ‘I’m more ill than you are’ arguments, so try to pull away from people who always have to do one better than you!

28. The nicest thing someone did for me when I wasn’t feeling well was: There have been so many lovely things people have done for me. Whether it’s been sending me some thoughtful post, sending me a text or even popping in for a visit. It was particularly nice when I was in hospital and some of my closest friends came to see me. I was feeling incredibly ill and didn’t want people to see me, but they were completely normal with me and treated me no differently to they had when I was out of hospital. I really appreciated that. I’ve also had friends who have dropped everything to come and see me when I’ve been having a difficult time.

29. I’m involved with Invisible Illness Awareness Month because: The illnesses I suffer from are still so misunderstood and I believe it is important to talk about them to help break misconceptions. I am also involved for other people who are suffering, to show them that they’re not alone in what they’re going through.

30. The fact that you read this list makes me feel: Incredibly grateful! I hope it has left you with something to think about, or spurred you on to talk about it with someone else.

Do you have any questions about what I’ve written here, or anything else to do with my illnesses?

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Thursday Throwback

I love looking back through old photos – I think it’s amazing how many emotions and memories a single photo can evoke. I thought I’d share an old photo with you for my Throwback Thursday.

This photo was taken when my youngest sister was still a baby, in our kitchen, long before it was decorated. Whenever someone had a birthday, my Mum would set a birthday table with balloons, party food and a yummy cake. Being a big family, we celebrate a lot of birthdays, so a month wouldn't go by without a family tea party, and we all loved them!

I loved having lots of brothers and sisters, as I always had someone to play with. We generally got on well and were always causing mischief together. Having a large family has definitely made me want to have more than one child, although obviously it will be a blessing if I’m able to have even one little bundle of joy.

Now that we’re all older, and doing our own things, it’s still lovely to be part of a big family. We don’t get all of us together very often any more, but when we do it’s like a big celebration. My brothers’ have girlfriends’ now, so our family is continuing to expand, and I love it. There is always someone to be there for you, no matter what. The next few years are going to be so exciting – one of my brothers is getting married and hopefully in the future I will get some little nieces and nephews!

Do you come from a big family, or are you an only child? How do you feel about family life when you were younger?

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Getting my bake on - Red Velvet Cupcakes

As you probably know by now, I love doing a bit of baking. In my last baking post I mentioned that I’d made a list of all the things I’d like to try and bake – it seems to grow every time I look at it, but I guess it means I’ll never run out of ideas of things to try! Next up on my list were red velvet cupcakes. I’ve actually tried to make them before but they didn’t turn out right and looked more like slightly odd chocolate cakes! So, I rooted around for another recipe to try, and came across this Hummingbird Bakery one. I’ve heard great things about this particular bakery, and am dying to go to one of their shops to try some cake, so I thought it would be a good place to start. Happy Baking!

Ingredients

60g butter, at room temperature

150g caster sugar

1 egg

10g cocoa powder

20ml red food colouring (we used Dr. Oetker’s paste – 2 10g tubes)

½ tsp vanilla extract

120ml buttermilk

150g plain flour

½ tsp salt

½ tsp bicarbonate of soda

1 ½ tsp white wine vinegar

For the frosting – 300g icing sugar, sifted

50g butter, at room temperature

125g cream cheese, cold

12-hole cupcake tray, lined with large cupcake cases

Sprinkles of some description

Preheat the oven to 170C/325F/Gas Mark 3 and line a cupcake tray with cases.

Mix together the butter and sugar. Beat until light and fluffy.

Slowly add the egg and beat until everything is well incorporated.

In a separate bowl, mix together the cocoa powder, red food colouring and vanilla extract to make a thick, dark paste.

Add to the butter mixture and mix thoroughly until evenly combined and coloured.

Slowly pour in half the buttermilk, beat until well mixed, then add half the flour, and beat until everything is well incorporated. Repeat this process until all the buttermilk and flour have been added. Beat until you have a smooth, even mixture.

Add the salt, bicarbonate of soda and vinegar and beat until well mixed.

Spoon the mixture into the paper cases until two-thirds full and bake in the preheated oven for 20-25 minutes, or until the sponge bounces back when touched. A skewer inserted in the centre should come out clean.

Leave the cupcakes to cool slightly in the tray before turning out onto a wire cooling rack to cool completely.

Meanwhile, for the cream cheese frosting: Beat the icing sugar and butter together until the mixture comes together and is well mixed. We found it quite difficult to get a light and fluffy mixture here, so you may find it helpful to add the cream cheese and then beat again until your mixture is light and fluffy. Do not overbeat, as it can quickly become runny.

When the cupcakes are cold, spoon over the cream cheese frosting on top, swirling gentle with the tip of a spoon. Sprinkle with your choice of topping, and enjoy!

Have you made Red Velvet cupcakes before? Or do you have another recipe you’d like to share with me?

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