Facing a Fear

It's blog time again! But this one's only going to be a short-ish one as I haven't done any planning. I've only just decided to do it as I thought it would be nice to talk about my day, so forgive me if it doesn't seem as well thought out as my blogs normally do. I've been quiet lately as Marfan Syndrome Awareness month is coming up, so I've been trying to focus on putting something together for that. For now though, I'll tell you about today. 

This morning I went to church with my friend, she invited me along because she knows we share similar interests. Even though I have known her for a very long time, I was still nervous about going with her because I knew there'd be a lot of people there, (People are my biggest fear) & I always feel out of place in the middle of a crowd. But my friend made me feel less anxious by sitting with me at the back of the room out of the way of most people. I was worried about doing that in case I was seen as being rude, but nobody minded & everyone who spoke to me was friendly which made interacting easy. The service last nearly 2 hours & then my friend fetched me home.

I then realised what a huge step I had taken once again! (Sorry if you're bored of reading about my achievements) But it feels like a big deal to someone who has lived most of her life as a socially anxious oddity who would do anything to avoid an outing. I still feel like I have a long way to go, I wouldn't have made my own way to the church & gone inside on my own. I'm not at the stange of wanting or feeling able to be alone in a busy public place, or an unknown public place, I still feel like I need to have a close relative/friend with me to be able to do that. But this time last year, had my friend have asked me to go out with her then, I would've politely refused her offer out of fear. So looking at it like that.. I guess you could say I am making improvements.. Small ones, but still enough to be proud of.

I can't take all the credit for my bravery today though. A special thanks has to go to my friend for encouraging me & letting me know it's ok to be the way I am..🙂. I think that's it for now. X x

Just a Short Post To Keep Everyone Updated

It's blog time again guys! Although I don't have much to say at the moment as my mind has been more focused on planning next month's blog because February is Marfan Syndrome Awareness Month. So I've been busy trying to draft something up for that, but I'm having to think hard as I already did a blog based on my personal Marfan story back in November, and I don't want to basically just repeat everything I said then. But at the same time..I also don't want to ignore the opportunity to raise awareness of something that I'm hugely affected by. So, I'm not making any promises, but I'm hoping to put something good (or at least publishable) together for February lol. 

That's not the only reason I've been quiet lately though. The fact that I've been in low spirits is also partly to blame as it has been impacting on my ability to concentrate on writing. But hopefully, by doing this blog & planning February's..my motivation will be brought back. That's my aim anyway. 

I've not blogged properly since my Raw Honestly post, which some of you might not have seen as I didn't share it with everyone. I only published it on a few Facebook groups & on twitter, just because I didn't feel brave enough to let everybody read it as it was such an openly honest blog. But to those who I did share it with..I want to say Thank-you for all your kind replies, I never expected so many people to say they felt the same as me. It made me feel less embarrassed about publishing it. So thanks again.. x

Right, I think that's pretty much it for now. I know it's been a sort of short blog, but I'm sure my next one will be better. I have my notepad & pens ready & waiting to jot down some thoughts for my Marfan Awareness Post, which I am going to try putting my mind to once I've finished this..

From Scoliosis To Marfan Syndrome

I was diagnosed with Scoliosis when I was 13 years old. I clearly remember the day I had to go for an X-ray because I had been complaining of back pain, I waited a while then the consultant came to see me. I was with my Mum as he explained what was wrong, he told me I had an S shaped curve of the spine, called Scoliosis. He didn't tell me much more than that, apart from saying he'd refer me on to an orthopaedic surgeon. I went home that day not knowing what to think or feel, I was just a 13yr old girl who didn't understand any of this. 

The day came when I had to see the Spinal Doctor & I went along with my Mum & Dad and had some more X-rays, then I saw the consultant who told us my curve had progressed since I saw the first doctor a couple of months earlier. He told me I actually had a double curve which was aggressive & would need operating on, he said it was strange to be so severe at my age, usually Scoliosis can be treated with a brace & physio, but I needed surgery almost immedietely. He explained what that would entail and I found it a scary prospect as I'm sure my parents did too. I was booked in for surgery 3 months before my 14th birthday. 

I had 2 rods inserted at either side of my spine, held in place by a number of bolts & screws, the operation itself was a success, my spine was significantly straightened. Recovery was a long road though & much worse than I could've anticipated. After 5 weeks in hospital, I came home but was still unable to do anything other than lie down most of the time as sitting up caused too much pain & dizziness. I was told the dizziness was brought on due to the fact that my body had undergone a massive shock during surgery. After around 6 months, I was better able to manage the pain & my dizziness subsided as I slowly started getting back to some form of normal. 

Living with rods in my spine was hard to adjust to but I was becoming more used to it. I wasn't totally pain free but I could bear with it. My spinal surgeon did tell me all that before the operation, he said the aim was to straighten my spine because it was pressing on my vital organs, it wasn't to cure me of all aches & pains. As time has passed the pains in my back have worsened because some of the screws at the top of my spine are protruding more than they should be, so no matter where or how I sit, I'm always in pain from my neck to around the middle of my back. 

At my last check up my Doctor said although it's not an ideal way to live, it's better left alone at the moment as even though my screws seem to be loose & protruding, they are still holding my rods in place. An operation to try replacing them could end up doing more damage than good & it's possible that I would end up needing to have the full operation done again because everything is at risk of loosening once they touch the screws. On top of pain caused by bolts & screws, I also have left over nerve pain at the bottom of my back, if you don't know what nerve pain feels like, I would describe it as a painful pricking sensation. 

It's a depressing thought knowing nothing can ever solve my back problems but I try not to let it get me down too much. I deal with it by resting a lot as that's the only thing that helps to settle my pains a little. I have to be careful how I move, if I happen to make a wrong movement my screws feel like they are about to pop out, which then causes agony for the rest of the day. I can't bend at all either as it's not really possible with rods at either side of my spine. Having said all this, I dont regret having my Spinal Fusion, without it I might not be alive now as the curve was pushing into my lungs, making it hard for me to breath

The operation definitely changed my life though. It definitely made things more challenging, but since then I've developed a few more health problems so I'm getting more used to living with difficulties. I found out that my Scoliosis was a symptom of a more rare condition that I didn't know I had until a couple of years after my surgery, called Marfan Syndrome. It's the reason I've suffered with health problems since being a small child. Marfan Syndrome is a rare genetic disorder that only affects 1 in around every 5,000 people. Rarely, a person can be affected spontaneously, meaning there is no family link which seems to have been the case with me. I thought being diagnosed with Scoliosis was scary, but finding out I had a severe & rare condition was even scarier. 

I live with a lot of chronic health problems now as a result of Marfan Syndrome, which aren't easy to cope with but I think the psychological effects have been the hardest to deal with. It has made me feel isolated being the only one in my whole family to have a rare condition. So now I'm waiting to see a therapist which will hopefully help me come to terms and deal with all the upset caused by my health

A Short Explanation... x

If you read my last blog you will know that I've now decided to remove my Facebook blog page. A few people have asked why I'm doing this so I thought I would do another blog to explain my reasons more clearly. I don't think people understand my decision to delete it so soon after I set it up. But hopefully I will be able to give a better explanation here. 

I didn't consider anything other than making things simpler to begin with. But as time went on I started looking at it like this.. I could keep sharing my posts on the page, but I'd have to edit what I was writing about because I didn't want what ever it was to be read by everyone on Facebook, or I could delete the page & go back to blogging in the honest & open way that I did before. 

By sharing my blogs on the page I felt like I had to think more carefully before writing them. I had to question weather I was happy for people to be able to visit a facebook page & find out so much about me, did I really want friends of friends coming across my page & reading my life stories? The answer was no and in the end that was my decision maker. 

 It might sound like a stupid theory because I don't know who's going to come across my blogs anyway once I've published them. My Marfan blog ended up in Brazil after all! But the difference is, if someone reads my posts on the internet (Not on my Facebook Page) then there is a much less chance of them actually knowing who I am in real life, which is how I like it because it makes me feel much more comfortable with it that way. A big number of people who liked my Facebook page knew me, & I was nervous about them sharing something I'd posted & telling people who had wrote it. If I could've kept my identity secret, I might have wanted to keep using the page. But that can't always be possible when people already know you. 

So there you go, that's why I've decided to remove the page. Hopefully everyone understands better now that I've given a bit of an explanation... X 

Read About My Decision To Delete My Facebook Blog Page... x

This time I want to talk about my Facebook Blog Page & why I've decided to delete it. I made the page a few weeks before Christmas & have been using it to share my blog posts on. It wasn't something I always intended to do though but the idea came after people where asking me if they could read my blogs, which meant I was having to share the links around in seperate places, which I didn't mind. But I thought it might make things simpler if people could read everything all in one place. And also, I guess I just thought it was normal to create a Facebook page for my blogs as it's something that most bloggers do. I made the decision to set up a page based on those 2 things but I didn't take into consideration how I would feel about hundreds of people reading my personal business on Facebook. I started questioning weather I was comfortable with that but I tried to stick with it in the hope that I might get used to the idea, but something in my mind can't adapt to it & my thoughts keep leading me back to thinking that broadcasting my blogs this way isn't for me. 

So, I've decided that after this post I will delete the page. I'm still going to blog, I love blogging! And I'll be more than happy to share the links with anyone who wants to have a read. I'll also share the blogs on a few of the groups that I'm on, I'll probably post them on my own Facebook page too. So I'll still make sure people get a chance to read them but by doing it that way it means I have better control over who see's my stuff. 

Before I go I just want to say a huge Thankyou to everyone who did take an interest & like the page. I'm sure you'll still see my blogs cropping up somewhere. I don't mind if they get shared around. I just wasn't keen on the idea of having a whole page on Facebook that contained so much about my life. Thanks again. X X X 

Raw Honesty (I Can't Believe I'm Posting This)

I am not sure if I will publish this blog once it's finished, I'm only writing it to get a lot of things off my chest and some of those things aren't going to be pleasant. I don't know if I am brave enough to let people read my rawest feelings, especially my family members as I know they like to read my posts. But if you're reading this now then it means I have braved it. Please don't feel sorry for me or anything of that sort, I'm not doing it for that. I just needed to completely offload in a way that I have never done before. I try to always be honest about how I'm feeling when I write my blogs, and I have been so far, everything I've wrote has always been the truth, but I've edited it slightly to make it sound less harsh, I've held back a little because being completely honest about my feelings might upset & worry those close to me, which is the last thing I want. But I need to remember why I took up blogging.. To let out my darkest & deepest thoughts & feelings. If I'm not going to stick to the purpose that I started doing it for, then there's no point doing it at all. Like I said, I have been truthful in my previous blogs, but only to a certain extent, I haven't 100% gone for it and completely been as negative as I feel.

In my last blog I mentioned that I am now waiting to see a therapist due to feeling low, which is true, but I made it sound like a minor issue when in actual fact, (besides my health troubles) it has been my biggest problem over the last 12 months. My mindset has been very negative & I can't seem to shake off my feelings of depression & anxiety. Everybody has anxiety from time to time, we all worry about important stuff, but that's normal. It's not normal when you worry every hour of the day about things that shouldn't matter at this moment, "How am I going to make it through this year" "I can't manage on my own" "Who's going to be there for me" "I have nobody, I'm totally alone" "What's going to happen if my health gets worse in a few years"... That's just an example of the things that go around my head every single day of my life. People tell my I shouldn't worry, just be happy, they say. But they have zero experience of what it's like to battle with your mind everyday, or to live with such dark feelings. I cry at some point everyday, several times actually, because I feel so down. I feel like I am a failure to myself & a dissapointment to my family. I try, but I don't know how to change that.

I visited my Doctor because I realised I needed help, I realised this was not going to go away. I needed a professional to point me in the right direction because if I'm honest, I feel lost, totally lost & somewhat alone. I'm not alone in reality though, I have a big family who I see a lot of, but that doesn't take away the feelings I have. The feelings of not knowing what to do with myself, the thoughts of not knowing how to handle life. Anyway, my Doctor gave me a number & told me to call it, he said it was to refer myself to a councillor, which I was happy to do because I agree that I need to talk to someone. But other than that, he couldn't have shown less interest even if he'd tried to. After handing me the number, he smiled & asked if there was anything else. That was all he had to say on the matter, I mean seriously?! Is there anything else?! Is that really what your GP is supposed to say to you when you've just admitted that you have been suffering from anxiety & depression for the last 6 months?

I'm not entierly slating my Doctor, the surgery is very busy & I understand that he only has a certain amount of time, but I just wasn't quite expecting such a matter of fact response. I thought he might've asked me a few questions & had a bit of a chat with me, which might have made me feel a little better, but he didn't really engage with me on the subject, apart from giving me a councelling number & telling me that therapy is the best place to start, he barely said anything. So I hope you can understand why I feel even more lost than before. I mean, how are you meant to get the help/treatment you need if your GP fails to take your issues on board properly? Maybe he didn't mean it to come across like that, I'm sure he thinks he's done what he can but I can't help feeling slightly uncared about. I phoned the therapy number & explained my problems, they've put me on a waiting list & apparently there's a 3 month wait which isn't ideal but I get that they are busy. I just don't know what I'm supposed to do with my anxious feelings until then, but I am managing so maybe it's not as bad as I think. Not everyday is bad, some are better than others & some are worse.

Apart from my Mum (because I live with her) Nobody else has any idea of how I really feel. When my family members come round to visit I probably seem happy, and to be honest, I am when I'm with them. It's just when I'm alone that my thoughts & feelings become more troubling and I start worrying about tomorrow, next week, next year, then that makes me realise how stupid my life has become. How have I got to the point of doing nothing with my time except for feeling anxious & downhearted? The fact that I've let that happen then adds to my stress. Everything adds to my stress at the moment. If I have an appointment to attend it increases my anxiety levels because I don't go out alone, so my thoughts will consist of "Who's going to come with me" "What if they are annoyed for having to come with me" "What if they can't make it, what will I do". I know my perception of everything is wrong, but try telling my anxiety disorder that!

In my previous blogs I've talked about how I made some improvements last year, how I took some steps that I never would have taken a couple of years ago, and that's all true, I did make a few forward moves in 2016 which I'm proud of. But although I've done that, it hasn't really done anything to alter the way my mind works, I thought maybe it would combat my low mood & anxiety but it hasn't. I am convinced that my health problems have always contributed to my state of mind, when you live with chronic issues your whole life it's bound to have an affect on your mental well-being. But I'll be honest & say I'm to blame for not asking for help sooner, I've always been prone to anxiety issues from time to time, many times I could've spoken to one of my doctors about how bad it was but I never did because I wasn't brave enough. So, I'm happy to hold my hands up & say I know I'm partly to blame. But I also feel like I could have/should have been offered more help from those in the medical profession, they know I've had a lot to cope with over the years so it probably would've been sensible for them to offer me some kind of emotional support, rather than just looking after my physical health. But nothing can be done about that now, so I'm trying to concentrate on the therapy that I've got coming up.

I've just read over this whole thing & realised how long it is, it's probably my longest blog to date. I feel embarrassed at some of the things I've wrote & I can't believe this.. but I've decided I will publish it after all. If I don't, it's like saying people should be ashamed of feeling/thinking this way and I want to help people realise that that's not true, there is no shame in admitting your rawest of feelings. Having said that though, I'll probably feel a bit uncomfortable myself after posting this, just because I'm not used to letting people in on my most deepest feelings. I'm only going to share this blog with my friends on support groups, and maybe other places like twitter. I'm not going to post it to my Facebook page because then my family members & people I'm close to will see it and if I can help it, I want to try and stop them from coming across it. It's funny how I don't mind so much about sharing this with strangers but when it comes to friends & family, I feel too embarrassed to let them read it.

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 ...