End Of The Year Reflection

I can't believe we are at the end of 2016 already, it's gone so fast but at least it gives me a chance to write a blog based on this years happenings. It doesn't seem like 5 minutes since I first started blogging back in june! Taking up Blogging doesn't sound like a big deal, but for me it's been the best thing about my year. By joining Blogger I gained a voice, and I gained the courage to speak up about things that trouble me. Initially I wasn't doing it because I wanted people to read, I was just doing it to give myself something else to focus on other than my worries. But as time went by I slowly built up a strong readership of people who can relate to the things I blog about, people who suffer with similar problems as me, and more importantly, people who fully understand my words, all of that has given me more motivation than ever to keep Blogging, even though I only do it as a hobby, it has made me feel like there's more of a proper purpose to it. I just want to say a huge thank-you to everyone who has taken an interest. At the beginning of this year I was just a socially anxious oddball who didn't know what to do with her time, that's why I turned to Blogger, because I needed a hobby. I didn't think it would lead me to the point of doing things that I have never felt capable of, such as publicly speaking about my personal business, & interacting with people, even though it's only online, it's still a step forwards compared to where I was this time last year. I guess I owe Blogger a really big High Five for giving me the determination that I needed!

My greatest highlight of the whole year came at the beginning of November when I shared a blog I had written about Marfan Syndrome, a rare & serious health condition that I have. It's not something I have spoken about before until this year, not even to my own family or friends on Facebook. Ever since I was diagnosed with Marfan Syndrome, the word has made me feel queasy, which is why I have not mentioned it before until recently. I can imagine it was probably a shock to read for those who know me but didn't know about Marfan. Anyway, when I said my blog about it was my biggest highlight, that's because it did so much better than I would've ever predicted! In a matter of days it had travelled around the world, reaching people in Africa, Brazil, Canada & more, gaining more than 10,000 views & also recieved a share off The actual Marfan Foundation based in Port Washington! To this day I still don't understand how a basic person like me could gain such a mega response for writing something that I didn't even class as anything special. It was just my honest & open feelings based on how I felt about being affected by such a damaging condition. I'm not going to lie, I do feel pretty proud of myself & I definitely see that as a huge achievement, especially for someone who only recently took up blogging! Not many people who are as plain as me can say they wrote a blog that ended up going viral, but that wouldn't have happened without so many kind people sharing it, so once again I want to say a big thank-you to all of you. 💓

As well as Blogging, I have also managed to accomplish some other very small things this year, I say very small things because I know that's how they seem to those on the outside, but to me, the fact that I am finally starting to make slight improvements means a huge deal. To someone who has faced anxiety issues her whole life, the fact that I've taken steps towards overcoming that this year is something to feel satisfied about and for once I can look back over the years events & feel a tiny bit of pride at the little things I have done.

I've also had a few low points this year too, as I'm sure many people have. I wanted to leave it until the end before bringing this bit up as it's always nice to read the good parts first. My low points have mainly consisted of feeling down due to my on going health troubles, I don't want to go in to too much detail as it's not something I feel very comfortable discussing just yet, but I like to base my blogs on honestly so I thought it was only right that I include the fact that although I have made some changes for the better, I have also had some hard times as well. I visited my Doctor a few weeks ago due to my lower than normal mood & he has referred me to a councellor because he thinks I need to talk to someone who has a better understanding, like I said, it's not quite something that I want to blog about at the moment but I thought I should briefly mention it. I am on a waiting list for now & will be contacted when an appointment with a therapist becomes available, which hopefully won't be too long.

Right, I think I have just about covered everything that I wanted to say this time so I shall bring this post to a close now by saying a super big Thank-You for reading once again, and for following my blogs since the beginning of my journey. I can't promise to always have something substantial to write about but I can assure you that I will keep on blogging throughout 2017.. That's the plan anyway! Happy New Year Everyone..💓💓

A Thank-You Speech (2nd attempt)

This is just going to be a very quick post because I have already done this one, but stupidly & accidently I pressed revert on my blogger account & it messed the whole blog up, so when people was clicking the link, nothing was coming up. I wasn't going to bother doing it again because I can't remember exactly what I wrote lol, but I'm going to give it a try. Some of might've read it before I messed it up, if you did, you won't want to read it again, but I'm just posting it for anyone who might not have had chance to see it before I managed to loose the whole thing! At least it's taught me to be extra careful in future! I'll try to say everything that I said in my original post, but I'll aim to make it shorter. I can't promise that though, as you all know what I'm like once my fingers get going on this keyboard, they don't know when to stop!.. Here goes.. 

I just wanted to say a really big thankyou to everyone who read, commented on & shared my Marfan Syndrome blog. I didn't expect to receive almost 10,000 views & a share off The Marfan Foundation, and I certainly didn't expect something I had written to reach so many people, Africa, Canada & Brazil are just a few places that I received messages from! I guess that's what they call Going Viral! I was very grateful to get so many pleasant comments from strangers, all telling me how amazing/brave it is to share my story so openly. Although I appreciate their kindness I don't really understand it because in my opinion I'm not doing anything special, or brave, or amazing! I'm just a girl who happens to be affected by a rare condition, and I also happen to like blogging about my experiences because it gives me a constructive outlet for my feelings, I'm doing something useful by putting my thoughts in a blog, instead of just sitting around all the time thinking about my health issues.

I think I've pretty much covered everything that I said in the first place but not in so many words this time lol. Before I finish I just want to say a great big THANKYOU again to all of you for making me feel like blogging is worthwhile, and for all your views, comments, messages & shares. That's it for now, hopefully I won't accidently revert this one!.. X X

My Scoliosis/Spinal Fusion Story (It's a Long Read)

Today I bit the bullet and had my hair chopped into a very short pixie crop with a heavy fringe. It's something I have been thinking of doing for a while now, I had a similar style a couple of years ago but I'd let it grow since then. It's only when my hair starts to grow though that I realise how much having longer hair affects my back. Washing it becomes difficult due to the rods in my spine because I cant bend, so I've had to comprimise lately but that has been putting too much pressure on my screws, making them pop in & out, as well as bringing on terrible pains around my metal work. It was that which led to my desicion to go for the chop.Well that, and the fact that I like to have a bit of difference about me, there's nothing I hate more than fitting in with the crowd, I love to stand out & I can't do that if every other person I look at has the same, or a similar hairstyle as me. So now I've cleared that one up, lol, I'll get to the main point of this blog. I thought whilst I am on the subject of my back issues I might as well take this opportunity to talk about my spinal fusion.. Put your glasses on guys it might be a long read!

When I was 13 years old I started having trouble with my back so I had to have some X-rays to find out what was going on. The doctors discovered and S shaped curve in my spine, starting at the top & making its way down to the bottom. They told me it was called scoliosis & said I'd need surgery to correct it as it was too severe to be treated any other way. Whilst I was waiting for them to give me an operation date, the curve kept progressing & I ended up with a visible hump on my back, I was breathless because the curve was pressing on my lungs and I had a lot of severe back pain. At 13 years old, I barely understood what was going on, I'd never heard of Scoliosis & never thought something like that could happen, I did know that it was serious and I can still remember the fear I felt when the doctor told us what the operation would involve. He told us an operation for Scoliosis was called a Spinal Fusion, which means 2 rods are inserted at either side of the spine, held in place by a number of bolts/screws, it's much more complicated than it sounds.

The day before my operation I was admitted to hospital so that they could prepare me. I was very upset & cried a lot, especially at the thought of being in surgery for 10 hours! My family & I was told that the operation was a risky one, a spinal fusion is one of the biggest operations that can be done, there was no guarantees that it would go well. A few wrong moves could have paralysed me but I had no choice about having the surgery, without a spinal fusion the curve would have carried on pressing into my internal organs, which would've either put me in a wheelchair a long time ago, or worse, I could not even be here now. The morning after I was admitted I was taken down to theatre at 7.30, my Dad came with me & stayed until I was put to sleep. I'm sure the day was a long one for all my family as they congragated in the hospital waiting area.

I took a couple of days to properly come round after the surgery but everything went smoothly and I was moved out of intensive care after 48 hours, although I was unable to move for another week, and even then it was only slight movements. On top of all the pains I had coming from my back, I also had to deal with the pain of 6 broken ribs! The surgeon had to break them during the operation. I spent a long 4 weeks in hospital & I can't really say I improved a lot during that time. Recovery was slow, slower than I expected, well actually, I don't exactly know what I expected, it was the first time I had ever experienced anything like this.. I was a 13 year old who thought everything was very black & white.. I'd have the operation, recover quickly, come home & be back to normal. That was what my head thought. The reality was very different though!

I was very glad to be discharged from hospital after 4 weeks but that didn't mean I was fine, far from it actually & it took me a long time to get back to some form of "normal" The first few months after surgery was one of the worst times of my life. Imagine having to lay flat on your back for almost 24 hours a day, apart from sitting up briefly at meal times, for almost 4 months! That was my life for a while & at 13 years old I found it hard to cope with. I was very unhappy & I can still remember how angry I felt, I couldn't understand why this unusual thing had happened to me & I was scared that I'd never get well again.As time passed though I did start eventually adapting to the changes I had to make now that I was living with rods in my spine. I had to have physio which taught me new ways to move around, with rods in your spine, you can't move as easily as other people can, and you definitely can't bend down, you can try, but it hurts like hell! I slowly got the hang of how to cope after a Spinal Fusion.

At my regular check-ups the consultant told me that the surgery had been a success, everything went smoothly & my spine was visibly straighter, which I was pleased about considering I had a large hump beforehand. I don't regret having the operation, it basically saved my life & for that I'm grateful, but in terms of back pain, it's much worse now than it was before the surgery, this is all down to the bolts & screws, they are very protruding and you can even see them poking through my skin when you look at my bare back. There's a lot of them & some are bigger than others, it makes everything very uncomfortable, I can't sit up for too long without having to go for a lie down, as that's the only thing that brings relief to the unpleasant sensations caused by my metal work. When I'm sitting down I need to have firm cushions behind me, if I don't, my screws stick out even more & they'll stay like that until the next time I can lie down. I haven't yet managed to find a medication that helps with my back pains. I have spoken to other people online who have also had spinal fusions & it seems I'm in the minority yet again because most of them get on fine with their rods/screws, they can't feel them & they barely hurt, so that's good news for anyone who might be facing similar surgery. It just so happens that I was one of the unlucky ones.

Finally, I think I'm coming to the end of this blog but I hope it's been an insightful read rather than a boring one. It's time for me to go for a rest now, and time for you to take off your glasses & give your eyes a rest! Haha. I don't know what my next blog will be about yet but I'll try to make it a shorter one.. Thanks for reading. X x x

P.S. After reading over my blog I have realised that I didn't mention the fact that I had to wear a brace for a whole 12 months after my operation, which helped to keep my body straight as well as hold the rods in place until everything had fused together properly. Wearing the brace was a horrible experience, it was heavy and  hurt a lot. I just wanted to add that bit before publishing this blog as the brace was a very important part of my recovery, without that I wouldn't have been able to sit up at all.
Once again, Thanks For Reading. X

Life With Hypermobility Syndrome

An example of how bendy my bones/joints are due to Hypermobility/Marfan
At the end of my Marfan blog I mentioned Hypermobility Syndrome but I didn't go into detail about that so I thought I'd do that this time. Hypermobility is something I am hugely affected by & in my case it's called Secondary Hypermobility Syndrome, which means it's a symptom of something else. Lots of people are hypermobile, meaning their joints are more flexible than they should be, but it doesn't cause them any trouble & they aren't affected by any additional issues, so for them it's just called "being hypermobile" and there is nothing else to it. Hypermobility, or hypermobility Syndrome is what they call it when more severe symptoms are involved, such as pain & other things, which then means it could be part of something more serious & rare, and that's the case for me as I have Marfan syndrome. Since I was a child I have suffered from bad joints but I didn't get an actual diagnosis of hypermobility syndrome until I ended up needing a spinal fusion operation. I'm aware of the fact that most people have no idea what Hypermobility syndrome is, so before I talk about how it affects me I'll tell you a bit about what it actually means.

Hypermobility/hypermobility Syndrome as it's sometimes called, means that some of the joints (or all of them in my case) even my fingers & toes! are looser than they should be, this makes them weak & they slip out of place easily. Because the joints are too loose to support themselves, it makes them achy & painful the majority of the time. It affects me on the inside too due to internal tissue being too stretchy. Before I move on I should say that not everyone who has hypermobility syndrome will have another underlying issue causing it. People can just have Hypermobility syndrome alone, and also, everyone is affected in different ways, one person with hypermobility syndrome might only have 1 or 2 affected joints, another person could have all their joints affected by it, which is me!

The main thing I wanted to do today was get the point across that Hypermobility Syndrome is much more life altering than it sounds, people might hear the word hypermobility & think it means nothing more than a bit of extra bendiness. That statement couldn't be more wrong though & my own experience is proof of that. It's the reason my ankles throb after walking, the reason my knees are inflamed at the end of every day, it's the reason my hips constantly ache & my wrists are too weak to write/type without wearing a splint. Hypermobility Syndrome for me means I drop my toothbrush a minimum of 4 times every morning because my hypermobile hands/fingers are too wobbly to co-operate. It means I have to carefully plan what I'm going to do & how I'm going to do it, so that I don't put more pressure on my joints and it's the reason I need pain medication everyday. All of this is beside the problems I have with my back & the rest of my Marfan related symptoms.

Well I think I'm nearly done for now, I haven't said absolutely everything about my Hypermobility, this blog could go on forever if I was to do that lol. But I just wanted to give a bit of an insight into what life is really like when you are affected by these things. Hopefully people might now have a better understanding of what it means to have hypermobility syndrome as a symptom of Marfan, or even just Hypermobility syndrome alone. Thanks for reading. x x x

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many ...