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Showing posts from 2016

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

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

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 po

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

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

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 s

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 exp

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. Bot

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 minut

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 s

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 nex

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 fami

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