Thursday, 18 August 2016

Celebrating My Achievements

Yesterday the shortlist for the Blogger's Blog Awards came out and today students across the country got their A Level results and together they've got me thinking about a few things. At first I was a little gutted not to be shortlisted for an award, I think anyone would be and I still get upset sometimes that I had to drop out of school 3 months into my A Levels but it all got me thinking about some of the things that I have achieved.

When I first starting talking about my health and Marfan Syndrome on my blog the goal was always that talking about it would hopefully do some good, whether that be raising awareness or supporting others and making them feel less alone. Life has been pretty non-stop though and I haven't really had chance to take a step back and see what kind of impact I have had until now. I sometimes think that I haven't achieved much at all and that what I'm doing is pointless but after looking back at some of the things I've done over the past couple of years I can see now that I've achieved more than I could imagine. I might not have a blog award or A Levels but I'm pretty proud of myself and wanted to celebrate that a little today, perhaps to remind my future self that I have reached some of my goals.



Last year I was put in contact with a charity, the Hypermobility Syndromes Association (HMSA), who help support people with a hypermobility syndrome like Marfan and EDS. They asked me if I would like to share a little about what life is like living with Marfan Syndrome in their journal (their bi-annual magazine) and I jumped at the chance. I was finally given a real opportunity to educate people and raise awareness of my often unheard of condition. Marfan is very often left out of the conversation when people talk about hypermobility syndromes so I was more than happy to share my story and it was a little surreal to see my words printed out in a professional magazine. This year I then took the next step to volunteer with the charity and now I'm often their go to person if anything Marfan related pops up since I'm the only volunteer with the condition!

Recently I've also been given the opportunity to work with another charity, Scoliosis Association UK.  They got in contact with me after reading my scoliosis story that I shared for International Scoliosis Awareness Day and hopefully I'm going to be working with them really soon on a few things. My type of scoliosis is syndrome scoliosis, rather than the much more common adolescent idiopathic scoliosis and they are keen to share my story to inform people of how having a syndrome, such as Marfan, alongside scoliosis affects things such as having spinal fusion surgery. I really hope that sharing my experience will help others who do not have the usual scoliosis type as such information was not around when I had my surgery and even my surgeon wasn't sure how my recovery, for example, would differ from others.



I hope that by talking about Marfan Syndrome on my blog and social media and sharing my journey that I have raised awareness of the condition. Even if more people at least know the name then I am happy and perhaps a handful of you know some of the symptoms and physical features to look out for now which would be even more incredible! I sometimes wonder if I'm doing the right thing by sharing my story so openly but if I've even raised awareness of Marfan by just a tiny bit then it is all worth it.

Lastly this is a bit of a more general achievement and something that I never give myself credit for but I'm pretty damn proud of myself for just continuing blogging through everything. Since starting blogging nearly 5 years ago I've gone from having mild aches and pains to then having 3 major surgeries and now having to use a wheelchair/powerchair and the only constant that has really continued through all that is my blog. I'm not sure how I've managed to keep it going to be honest and of course there have been times when I have questioned whether I should continue or not but even after having a couple of months off I always come back to it. This is just my little space where sometimes I can get away from everything by talking about my favourite lipsticks or I can openly confront my health problems which in the long run has really helped me with acceptance.

I think what I'm trying to say for once is that I'm proud of myself what I've achieved. For so many years I had a very simple plan which really was only based of doing my exams and going to university so when those dreams shattered I found it difficult to focus on building new goals but I think I've finally found something that I can be proud of. If you are feeling down or like you've not reached your goals then look back on what you have achieved, even if they are only small achievements, because I guarantee it will make you smile.

Thursday, 11 August 2016

July Paradise Nailbox | Monthly Subscription Box

Over the past few years we've seen a lot of beauty subscription boxes appear, some have come and gone whilst others have stuck it out. All the boxes have always appeared to be very similar in my opinion though so when Nailbox contacted me I was pleasantly surprised to see that they are offering something a little different. Nailbox is a subscription box for people who love nail polish and all the nail accessories you can get these days to keep your manicure looking fresh and polished.

Nailbox Subscription box review


Each box contains 5 items, either 3 or 4 nail polishes and either 1 or 2 nail treatments/tools, a pretty good balance I think! They never send out the same nail polish twice as well and they work with big brands like Nails Inc, Elegant Touch and China Glaze to bring you a selection you'll like each month. I'm pretty rubbish at keeping my nails painted and perfect so I hoped that this would encourage me to try a few different colours and spend more time on my nails! Each box is £15 and delivery is free but they offer discounts if you pay for a set amount of boxes at once. On to what is actually inside July's box though which has a paradise theme!



The first product, the True Brit Nail Enamel in The Summer House (RRP £12.50), is meant to represent a sandy beach. I've not heard of this brand before but I really love the bottle and design! The shade is gorgeous but also quite neutral so it could be paired with any outfit quite easily and I think it would even look great when Autumn comes around.



The second product is more of a basic one but a total must have, the Brush Works Toe Separators (RRP £2.49). I actually don't own any toe separators which makes painting my toes very tricky so I was more than happy to open my box and find these inside!



The product that I was most excited to find inside the box was the Nails Inc Gel Effect Polish in Soho Place (RRP £14). I've tried Nails Inc polishes in the past before and really liked them but I've never tried the gel effects ones so I was excited to give this a go. This shade is meant to represent the sea and it's certainly a bold but very summer appropriate choice. I think this would look great on your toenails just peeking out from a pair of sandals!

The 3rd and final nail polish is from Angelica in the shade Snow White (RRP £2.75). I think at one point you were able to buy this brand in Primark, I'm not 100% sure if you can anymore though. I've never worn a white nail polish and I'm not sure if it's entirely my kind of style but either way it's a good basic colour to have in my collection.

The last product is the Nailberry Coconut Nailbalm (RRP £12), as I said before I definitely don't look after my nails well enough so I was more than happy to find this in the box. I've been using it ever since it arrived and it's definitely helped improve the condition of my cuticles especially, my nails are looking a lot more presentable now!

I have to say this subscription has most definitely impressed me! This box costs just £15 but you are getting nearly £45 worth of product inside and these are all products that I will use! If you paint your nails a lot and really enjoy taking care of them then I'd definitely say that Nailbox is worth trying!

This product was sent to me for review consideration but this does not affect my opinion and I am always 100% honest.

Tuesday, 9 August 2016

Spoonie Update | The Bad News I Didn't Want To Hear

I've spent the past few days going back and forth about whether I should write this blog post, I've always been so open and honest about my journey with my health but sometimes you question whether you are annoying people or others think you are attention seeking. It's something that is always at the back of my mind when I write my spoonie updates, despite this being my blog and therefore I should be able to write about whatever I want. When people get bad news everyone deals with it in their own way and personally I find that writing these posts and talking about it honestly helps me a lot. So, this post is going to be quite negative and there isn't really a positive side to it so if you'd rather not read then I totally respect that but I know that doing this will help me a lot.











If you read my previous spoonie post  then you'll know that we thought we had found the reason for my back pain and various other symptoms. Scans that I had last year showed that I had a Tarlov Cyst sitting at the bottom of my spine in the sacrum area but we didn't get much more information than that. Within a few weeks I had some more detailed scans and I was due to get the results in September, that was until my surgeon's secretary rang me to tell me that my surgeon wanted to see me a lot sooner, the very next week. I think that was probably the point when I realised that I wasn't going to be getting good news.

Unfortunately on the day of my appointment my surgeon wasn't around so I saw one of his registrars, I felt sorry for the guy to be honest as he didn't know me but had to deliver some not very good news. It turns out that my cyst is bigger than I had expected, than all of us had expected really. It measures at about 5.9cm long and it definitely stands out on the scans. I mention briefly in my last post that the cyst was eroding some bone in my sacrum and we managed to get some more information about that this time around. If my cyst keeps getting bigger then I'm at risk of fracturing my sacrum which would most likely result in more surgery and more metalwork, I'm not going to lie I have been laying awake at night worrying about that a lot.













Of course we asked about my treatment options, already knowing that they were anywhere from limited to non existent. They could operate and remove the cyst but I risk permanently damaging important nerves and leaving myself with life changing bladder and bowel problems. They want to do some epidural steroid injections to officially diagnose that the cyst is the root of my pain (it's pretty obvious that it is) but we don't know if we are going to go ahead with that yet as it's unlikely I'll get any decent pain relief from them and we risk causing more damage.

I feel like I have been given such an impossible set of decisions to make. If we do nothing then I'm left in with severe chronic back pain for the rest of my life, the numbness in my legs could potentially get worse and I risk fracturing my sacrum. But, if I let them operate then I risk leaving myself with even more life changing and life limiting problems. Sometimes I forget that I'm only 18 when doctors tell me things like this, I wouldn't even expect someone much older than me to have to make such decisions. Right now I feel somewhere between numb and scared, for so long we thought my pain was related to the spinal surgery I had and when we thought that we still had hope, suddenly it feels like there isn't much hope left.

Right now it seems the only way I'm getting through this is by ignoring the severity of it, I know I'll have to face up to the facts at some point but it's difficult to accept big things like this sometimes. The plan now is to get a referral to a neurosurgeon, someone with more expertise in this area, and really learn as much as possible about what my future could be like. I really hope I'm as strong as I like to think I am.
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