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

A Wasted Physio Appointment

I have taken to Blogger tonight because it's the only place I can turn to when I want to completely express myself, and my annoyance. I'm sitting in my bedroom as I write this. I feel discouraged once again after todays appointment. It was physio this time, & just as useless as expected. The physician's manner was offhand & rude. I didn't want to go there but my Rheumatologist insisted on it, I think she just wanted to pass the book because I am a Marfan/Hypermobility patient, something that she knows little about, neither did the physio though. She asked me why I was there & offered me almost nothing, which I had already anticipated. What I didn't expect though was her rudeness & lack of understanding. She told me to "Park up my health problems, & leave them there"! Apparently that's called managing, wow, why didn't I think of that simple theory?! I felt upset at the time so I didn't respond to her small minded comment, but now I'm at home I'm angry and want to go back & ask her how she would go about parking up Marfan Syndrome & it's related symptoms and leaving them there! If she thinks it's so simple I'd love to get some tips off her. If only I had been brave enough to ask her that before I left!

I only wanted a bit of professional advice from her but once again it looks like I'm left to be my own expert, something that you have to get used to when you have a rare syndrome that certain doctors know little about. The good side of that though is I've had to educate myself as much as I can & do as much research as possible, which isn't a bad thing because the more I learn about Marfan Syndrome, Hypermobility, and related symptoms, the more I can help myself & maybe even others. Whenever I have some spare time now I always go on the computer and pick up as much relevant information as I can manage. I would advise anyone in similar situations to do the same, so that next time you see your doctors, you go along armed with the appropriate facts.

While I'm on this subject I just want to highlight the importance of online support groups. My online Hypermobility/Marfan friends are the real experts, because like me, they deal with these problems on a daily basis. Without them I'd have nowhere to turn when I feel unsupported by certain medical professionals. They can often inform me better than some doctors because they can 100% relate to my symptoms, being part of support groups full of people who suffer in the same way as me is helpful because it lets me know I'm not totally alone with my troubles.

I'm nearly at the end of this blog now but I'm pleased that I've been able to use my experience with the physio to bring attention to my rare health problems. It's not a sympathy thing, I don't talk about this stuff because I want people to say "poor Lucy, she's got this & that wrong with her" I do it because there's not nearly enough awareness for Hypermobility, Marfan Syndrome, or other rare illnesses. Even the doctors don't have enough knowledge, so if I can bring focus to it by speaking about it in my blogs, then maybe it will make a few people want to learn more about it, which will then hopefully raise more awareness..   X

How I feel About Marfan Syndrome...

I said last time that I wanted to discuss Marfan syndrome in my next blog so I should start by explaining what that actually is. Marfan syndrome is a rare connective tissue disease that only effects 1 in every 5,000 people. In most cases, it's passed on through inheritance, meaning it runs in the family, but a very small number of people have got it spontaneously, this is called a spontaneous mutation & means there's no family link, strangely, I happen to be in that category and I was diagnosed after suffering many health problems throughout my childhood. at the age of 13 I developed scoliosis (a curved spine) and needed major surgery to correct it, which then led to further investigations & that's how my Marfan diagnosis was discovered, although it wasn't quite as quick & easy as that, it took the doctors a few years to finally put a name to all my troubles. Marfan syndrome had a lot to answer for!

Being told as a teenage that I had a rare & serious syndrome that only affects a small number of people was hard news to take, I realise now that I dealt with it badly at the time by refusing to talk about it. I didn't want anyone to know & that was because I thought it was easier to ignore that way. I pretended I wasn't bothered by the news but secretly I was kept awake at night by the doctors words. I clearly remember sitting in the doctors room with my Mum as she explained what the syndrome meant, she told me it was life threatening & said I'd need to go for all sorts of other tests, as if I'd not already had enough after all the examinations before my surgery! I left the clinic that day feeling abnormal for having yet another illness that no one else could relate to. I felt angry & shocked, angry at life for singling me out once again, and shocked that all my problems where the result of something so serious.

As the years have passed I've accepted what's wrong with me & I deal with it better now, partly due to the fact that I speak to other Marfan's online who are in very similar circumstances, and partly due to the fact that everything became harder to ignore when my symptoms worsened.My mobility has deteriorated quite a bit lately & I can't walk far without needing to stop due to aches/pains & tiredness. This is because my joints/muscles are weaker than normal so my body gets tired easily. I suffer with widespread pain everyday though weather I am walking or not. Then there's the problems with my back caused by loose & protruding screws but I'll save that for another time.

My family are very supportive & understanding but I don't think they know that I often feel isolated, it's hard not to feel like a small fish in a very big pond when nobody around you can relate to your unusual health problems. A few people might know the names of my illnesses such as Marfan syndrome/Hypermobility, but hardly any of them actually know what that means, which makes it harder to talk about if I ever want to. The photo I've added is a card that I carry around with me now, just in case I'm ever in a position where I need to explain my health troubles. It sums things up perfectly.
I think that's it for now. I hope my ramblings haven't bored you too much... X

An Insight Into My Week

Last Friday I had my regular check up appointment with the rheumatologist, the consultant is a nice lady who I've seen for the last few years, her kind & caring manner always puts me at ease. She told me once again that treatment is minimal for those with my conditions & I left feeling downhearted at the thought of living with these issues for the rest of my life as they continue to worsen. I'm not going to lie, when you get told time after time that your problems can't be solved, it makes you feel pretty unhappy. Yet again I had attended an appointment that was of no use to me, which seems to be becoming quite a thing for me these days. The following Wednesday & Thursday I had two more appointments at the cardio clinic. Wednesday's wasn't so bad, they just fitted me up to a monitor to track my heart rate which I could cope with, unfortunately I can't say the same for Thursday's appointment, I had to have a Tilt Table Test which wasn't an experience I'd ever want to repeat. I was strapped to a table & hooked up to a number of machines. The table was then tipped upwards & forwards and I had to stay there for almost an hour whilst Two cardiologists monitored the machines! This was all done in a dark room and  I felt dizzy & sick the whole time! When it was eventually over and I was finally unhooked from everything, they told me to remain seated for a few moments whilst I got myself together and had a drink  but I just wanted to leave as soon as I could. My Mum & sister were waiting for me outside and both said I looked a little out of sorts when I came out but I'm sure they would too if they had been hanging in the air for an hour! Now I've said all that I guess I should explain why I needed these tests in the first place, I don't want to go into too much detail, I'll save that for my next blog because I don't want this one to become too long and boring. But basically, I've got a thing called Marfan Syndrome & because of that loads of different health problems can occur, such as POTS, which is what they are testing me for right now, it's something to do with blood pressure & heart rate. If the results come back as positive, meaning something is wrong, then I'll probably be put on medication for it, which wont bother me as I've been taking medications all my life. My rheumatologist also requested me to have some blood tests to make sure there's nothing contributing to my severe joint pains lately & I'm now waiting for her to write to me with the results.

Well I think that's it for now. I've tried to give a bit of an insight into my week, which has probably made a boring read but if I'm honest, I find it rather therapeutic as I don't discuss this stuff with anyone so blogging gives me a chance to get it all off my chest. For my next blog I'm thinking about talking about marfan syndrome/Hypermobility and how that has affected my life, but that will be a pretty long story so I might have a few weeks of planning to do before I'm ready to publish it.

Fergie and Holly... X X

My two Budgies Fergie & Holly are going to be the subject of this blog as I thought it would be nice to talk about a happier topic. I'll start by giving you a little information about them. Fergie is my oldest bird, she's 2 & a half years old & I got her from a pet shop at only 2 months of age. With her beautiful sky blue & white colouring, she looks nothing less than perfect. She really is a unique looking bird. Holly is just as adorable with her pretty green & yellow feathers, and her unusual white spots on each cheek. She's only 8 months old & has been with us since she was just 6 weeks! My nephews named Fergie after Alex Ferguson, as we originally thought she was a boy! But now I have to tell people she's called after Fergie from Black Eyed Peas. Haha. Believe it or not, I actually made the same mistake with Holly, I called her Olly because I thought she was a male, until a breeder corrected me. Obviously I then changed her name to Holly. Both birds are clear wing spangles, meaning they have no dark markings. Now I've got that out of the way, I talk about that they are like..

In my opinion, having pet budgies is nothing but a pleasurable experience, especially if you are someone who likes company, because unless its their bedtime, there is never a quiet moment. With their amusing ways & delightful chatter, they brighten up my everyday. their fascinating antics are enough to entertain anyone, Fergie's all time favourite trick is lifting her cage door up with her beak, then letting it drop so it bounces down with an almighty thud! She only does this for attention if no one has been to check on her for a while. She definitely knows what to do to get noticed, she wouldn't let you ignore her even if you wanted to! Lol. Holly hasn't quite mastered the art of such tricks yet but with Fergie as her influence I'm sure it wont be long before she's up to the same things. She's a little quieter than Fergie, she twitters along all day but her tone is much lower, but she is a bit more playful than Fergie, I often walk in to find her hanging upside down from the top of the cage! Haha, Fergie on the other hand, prefers to stand tall & proud on her perch and show off her whistling skills as if she's performing on stage! Where-ever you are in the house, you can always hear her cheerful chirping which I find rather uplifting, but I'm sure you'd find it a tad annoying if you aren't keen on birds.
One of the best things about them is their obedience & willingness to do as they're told, for example, they know that they haven't to start their day until someone has taken their cover off in a morning & put the radio on in their room. If I do this at 8am, they will start chirping, if I don't do it until 11am they wont move or make a single sound! That's what you call well behaved budgies! Another thing I love about them is the bond they share between them, one day never passes by without me catching them rubbing beaks & snuggling. Cuties! I also should mention that Fergie seems to have a super special bond with my Mum, which is strange considering she wasn't as keen on birds as I am lol. Fergie being Fergie, must have picked up on this & decided to set herself the challenge of trying to win my Mum over by making a special effort with her, and would you believe it, it worked!! She now loves Fergie (and Holly) just as much as I do! Good Work Fergie Birdy..!! To finish off this blog I've included a photo of my birds sharing a cuddle, which is just one of the many beautiful photos I have of them. x x

Shifted Out Of My Seat!

I'd like to start this post by saying a sarcastic thank-you to the old guy who I had the displeasure of meeting in a shopping store on Friday, without our encounter I wouldn't have thought of blogging about this particular subject.Your rather rude manner has given me an opportunity to discuss a topic that can be quite an issue for many others in my position. So thanks again Mr Judgmental, I guess I owe you a high 5! Also, before I carry on I want to state that I'm not tarring all older people with the same brush, or meaning to cause offence to them or anyone else. I just wanted to do a post that shows how younger people with disabilities (especially hidden ones) get treated by certain members of the elderly.

This particular situation happened while I was in the supermarket with my mother & as I always do when out shopping, I'd taken myself off for a sit down due to pain & tiredness caused by my health problems. Normally I'd stay there around 10 or 15 minutes until I felt rested enough to carry on, this time though I was more or less forced to move after only a few minutes due to an old man standing up beside me, staring at me like he thought I was a young person taking up a seat for a laugh. I mean, what other reason could there be? It's not like a young girl could possibly need a sit down for health reasons, is it? Before I got up and walked away, I pointed out to him that there was a seat next to me if he wanted to sit down, to which he grumpily replied "He needed two seats to sort his bags out, so he'd stand up and wait for me to leave". I didn't respond but I was slightly irritated by this as I had no intention of moving at that moment. I'll be honest though, I felt pretty awkward just sitting there with a bad tempered looking elderly man standing up beside me, clearly trying to make me feel in the wrong so that I would vacate the seat for him (And of course his bags) His plan worked! I gave up my seat because I felt judged for being a young person who's disabilities could not be seen.

So to conclude this blog I guess I just want to say to anyone (Mainly the elderly in my experience) who criticizes others based on age and looks that young people can & often do suffer too.  You might want to think about that before forcing someone out of a seat in future! Also, to the man who did that to me.. Maybe you should go away and learn the meaning of (INVISIBLE ILLNESS).... X

Holding Back On Facebook. . .

I thought it might be a good idea to talk about Facebook & why I've decided to think about how much I'm telling people before posting. When I am in pain or suffering due to my health I tend to take to Facebook to vent and express my annoyance, this is mainly because when I'm in that frame of mind I think it's unfair that I should keep quiet about my sufferings while others are happily enjoying their lives pain free. But, lately I've become aware of how this could be coming across, I don't want to be seen as an attention seeking moaning minnie! As that's what I sometimes think when I see people constantly discussing their troubles on social media. I'm more than certain that I'll still be updating my status with a moan every so often, or sharing something that relates to my issues, but I'm becoming aware of the difference between sharing and over sharing!

There's also another reason for my decision to hold back on Facebook though.. When someone on my "Friends" list recently started claiming they had the same health problems as me I knew they was lying, I also knew this wouldn't have happened if it wasn't for my over sharing posts! By saying too much about my troubles, I had been unknowingly giving them exactly what they needed..Information! It opened my eyes to what certain "Friends" are really doing..Spying on my page waiting for my next confession, with the full intention of repeating my story as their own. The difference is though, mine isn't a fantasy! Like I've already said, I'm still going to write/share what I want when I feel like it, I'll just be more mindful of how much I'm giving away.   X

Blog Number Four..

My last blog was my most honest one so far, after publishing it I felt a little embarrassed because I'd admitted to some things that I had never spoken of before, and I didn't know weather I was right or wrong in doing so. But what's the point of doing a personal blog if I'm not going to speak honestly? There would be no point if I was to lie, but I still felt like I'd be judged or maybe mocked for owning up to being an over anxious oddball who suffers from health problems. Having said that though, my embarrassment soon wore off after a few people read it & told me they thought I had done a good job! I'm starting to realize now that there's no shame in being openly honest about who you are as a person.

When I first joined Blogger I had no idea what to talk about but I definitely didn't think I would end up revealing so much about myself! That just kind of happened unexpectedly as I came across a new found bravery! Haha. I'm not sure what my next few posts will be about but this is only my 4th ever blog so I guess I'm still in practice mode, although I do feel like I'm starting to take it more seriously. I'll have to go away now & do some thinking & planning ready for next weeks blog, I'm sure I'll come up with something...X x

A Step In The Right Direction..

I've thought a lot about weather I should bother blogging this or not and I came to the conclusion that I should because it's not something to be ashamed of.. So here goes.. Last week I made a massive achievement by taking a leap into the unknown when my friend invited me to a BBQ with her, bare in mind I'm a nervous, socially anxious oddball (In my own opinion) After much hesitation & some encouragement I kindly excepted her offer & went with her. I cant say I felt totally at ease at first but I managed to overcome that once I got chatting to a few nice people. After I came home I realized what a huge step forwards I had taken, it was the first time in a number of years that I had gone anywhere without a family member (Apart from short distances) This is partly due to my anxiety issues but mainly because my health problems have always made me feel different compared to others, which then leaves me feeling unsure when it comes to going out alone without a close family member.

It might seem like a small thing to most people but the fact that I did it is a huge deal to me and I'm hoping it's a step in the right direction. I'm glad I did it & the next time I get invited anywhere, I'm sure I'll still be nervous but I'll know I can do it if I try... X x 

Blog Number Two (July 2016)

I've decided to be brave and attempt to write my second blog. Although I didn't say much on my first one I still enjoyed writing it. It was great to put my mind to something constructive, and the fact that doing it doesn't effect my health issues is even better! There isn't much I can do anymore that doesn't cause pain/tiredness so it makes a nice change to do something & still feel good afterwards compared to some my blogs will sound boring and uninteresting but at the moment I'm still learning how to become a good blogger, but I'm sure I'll improve over time if I stick at it. For now though, I'm keeping my posts short because I don't want to be rambling on about nothing in particular lol. Hopefully next weeks blog will seem better than this one.. X


 I've decided to be brave and attempt to write my second blog. Although I didn't say much on my first one I still enjoyed writing it, it was great to put my mind to something constructive, and the fact that doing it doesn't effect my health issues is makes it even better! There isn't much I can do anymore that doesn't cause pain/tiredness so it makes a nice change to do something & still feel good afterwards. 

Compared to some, my first few blogs are going to sound boring & uninteresting, but at the moment I'm still learning how to become a good blogger but I'm sure I'll improve over time if I stick at it. For now though, I'm trying to keep my posts short because I don't want to be rambling on about nothing in particular lol. Hopefully, the more blogs I do, the better I'll get.. 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 ...