Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: 2013 Page 2 of 9

It’s Going To Be A Hectic But Exciting Week!!

So not long to go until my birthday and plans are coming together nicely. Not quite as quiet as I had hoped but then again you’re only 21 once right?! I’m getting ever so slightly excited now!!

A nice lunch with my parents and sister at a cafe in a local park and a walk (wheel for me!) round the gardens to take some photos. Before a buffet dinner at my grandparents with my Aunt, Uncle and cousins. Should be lovely, and it’s planned that way so if I get too tired I can go home – whereas if it was held at home I’d be stuck!

Also going to visit my boyfriend Tom this week. It’s going to be the longest journey I’ve made in quite a while but it will be so worth it! I’m really excited to see him, it’s been three weeks since we last met up which seems like ages!! That’s the problem with long distance relationships combined with one of you having a chronic illness like M.E. But then again they say distance makes the heart grow fonder…don’t they?!

And at the weekend I’m hoping to see my best friend and have a late birthday celebration! If we’re both well enough that is!!

Oh and the website for my next module – B203 Business Functions in Context – opens this week! So I shall be busy preparing for that starting on October 5th. Hopefully getting a bit ahead if I can.

Luckily I seem to have got over the cold thing I had last week, still have a lingering sore throat but not sure if that’s a cold or the M.E! Fingers crossed I survive the busy week with minimal payback.

Hope you all have a good week whatever you are up to!

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Goodbye T215

The past month or so has been spent working on my EMA and the middle of last week I said goodbye and submitted it!

It’s been a lot of hard work but I’m pretty happy with my submission. So now (after paranoidly checking it’s still there come the actual deadline this Friday) the waiting for results will begin!!

I’ve loved studying T215 and found it a really interesting course. Despite having a pretty horrible time with my health and struggling to spend much time on the computer during the most vital times – during the group work in particular! And not being able to attend the tutorials, I’ve managed to get some amazing marks for my TMAs. My favourite TMA has got to have been the final one and the video, despite being challenging with neighbour & health problems it was the one I enjoyed most!

The EMA has been challenging too (as it’s supposed to be…) but again it’s been interesting – once I got started! Glad it’s now finished, just hoping it will get me a decent grade!! Roll on December!!

In a few weeks time on October 5th I officially start B203 Business Functions in Context. The materials for that arrived a few weeks back and I’ve got a new printer in preparation for the block companions – the old printer would jam after just 5 pages! Ever so slightly frustrating!

I’m slightly daunted by this next course – know I said that about T215 but still it’s the truth! My health is still really quite dodgy and winter is my worst time of year generally picking up virus after virus. People have said not to fall behind on B203 cos it’s almost impossible to catch up – not exactly reassuring! Fingers crossed I’m going to manage it…but watch this space!

When the module website opens on Sept 24th I shall be looking to make a start to get ahead. My only slight problem is my birthday being the next day – it’s a special one so I shall be celebrating, and although by most people’s standards my celebrations will be very tame they will really take it out of me. So having to be careful and plan suitable birthday celebrations which hopefully won’t impact on my studies!

I will update this blog as and when I can/ when there is news to share! 

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End of an Era

Well it’s been a while, I’ve been rather busy of late but things have calmed down a bit now.

Generally M.E. wise I’ve been improving still, slowly but surely getting there. Managing round the house and garden without crutches, and getting out a bit more in my new wheelchair. This does however mean my bank account is taking a hammering after months of barely spending!

I’ve completed my End of Module Assessment for my current Open University course with a week to spare. More about that on my other blog soon.

This week I’m planning how to celebrate my birthday, doing something on the day and spreading visits out across the week hopefully – IF I can arrange it. Small things like that make a big difference to how I cope. I know the day itself will still be knackering but if I can spread it out a bit I can pace myself better…or so I hope!!

Sadly I’ve been knocked down by a cold/flu thing so currently spending my day lying on the sofa resting as much as I can without going totally insane! So I’ve found the time, the quiet and a bit of brain power to write this blog post.

The past few days I’ve been scanning old photos into the computer so we’ve always got them to hand – generally they’re stored in the loft so never get looked at. It’s long, boring task but it gives me something reasonably low energy to do. I place the photos on the scanner, leave them for however long it takes to scan them at the highest resolution then go back and change the photos! All without leaving the sofa!!

I’ve also had to take the difficult decision to step down from my volunteering position at the Association of Young People with M.E. after almost 3 years. As I can’t manage it with my University workload. I shall miss the work I did and the people I worked with immensely but I know in my heart of hearts I need to focus on my health and studies for the future. Hopefully one day I will be able to volunteer for them again.

Things are still going really well in life, having a few bumps along the way but that’s what makes it interesting! I’m looking forward to celebrating my birthday next week, just hoping the payback won’t be too bad as I officially start my next Open University module 10 days afterwards! And I will hopefully be going out somewhere nice this weekend as well!

I shall keep this updated as and when I can! Bye for now!!

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Amelogenesis Imperfecta

So I figured since I mentioned I suffered from Amelogenesis Imperfecta in my last blog post I really should explain a bit about it! Especially as it’s a rare genetic condition and I haven’t actually met anyone else other than my relatives who suffer from it.

Amelogenesis Imperfecta is condition that makes the enamel on teeth form abnormally. I basically had no enamel left on my teeth. My teeth were incredibly sensitive to hot and cold, were a brown/yellow colour and were incredibly difficult to keep clean because the surface of them was rough.

I grew up being teased at school, told I didn’t clean my teeth, when in fact I spent five to ten minutes brushing them in the belief doing so would make them whiter. (I was five and soon learned this wasn’t to be the case!)

I was referred from dentist to dentist, before being sent to the Dental Hospital in Whitechapel. Where each dentist I saw would say something different, use an electric toothbrush it’ll help you clean them better, don’t use an electric toothbrush it’ll do more damage than good because the teeth are so fragile!

I was also seen by a orthodontist when I was 9, that was terrifying! I mean I’d got used to going up to London, having one or two different people look at my teeth but at the orthodontist appointment there was 10 of them! Took a long time for them to just say, we can’t do braces or anything because the teeth are too weak.

In 2003 I had a general anaesthetic in The Royal London Hospital to have temporary white coatings & stainless steel caps put on. As well as having 5 teeth taken out. I was discharged from there at 10pm that night, had to get a taxi from Whitechapel to the station just outside London where we’d parked as I wasn’t allowed to use the trains. That was quite an experience though, I was absolutely petrified.

The I got M.E. in 2005 and dental appointments fell away for about a year and had to arrange a local alternative – there was no way I could travel to London in the condition I was in. So I saw local dentists, each saying different things, moaning I wasn’t cleaning them well enough. There was many tears of frustration – I was doing the best I could given how ill I was and how difficult it was to clean the teeth.

I hated going up to London, come to think of it I hated going to the dentist back then, always wondering what criticism they were going to throw at me as I could never do anything right. What one dentist told me was right, another dentist said was wrong. I couldn’t win.

In 2009/10 having improved significantly, I was referred back to London and the Dental Hospital there in the hope they’d be able to do something. No such luck, well they could but it wouldn’t happen til I was in my mid twenties. My grandparents were less than impressed by this and told us to investigate how much it would cost to go private. The answer A LOT. But they would not be stopped.

So in April 2010 I started having private treatment. Appointments often twice a week, sometimes twice a day! It took 2 months, 17 crowns, 4 veneers and a bridge to complete the work and now my teeth are protected and white! The private dentist said that if I’d waited til my mid twenties there’d be hardly any tooth left to do anything with.

After so many years of tears, wishing I had white teeth and hardly smiling properly, these days I have the confidence to smile and laugh without worrying what people will say about my teeth. I’ve got so much more confidence it’s amazing! I am forever in my grandparents debt for giving me the opportunity and the means to get my teeth sorted.

I now pay insurance to cover private dental work so regular check ups etc. so they can be done with that same dentist who did all the work.

I’ve taken over the bathroom with my dental products – I have two different toothpastes at the moment; one for ordinary use the other specially for my wisdom tooth. Two toothbrushes – a single tufted one for the wisdom tooth and a small one for the rest of them. The there’s two different flosses one for the bridge and the other for all the other teeth! Takes me 10-15 minutes to work through it all, but is so worth it to maintain these beautifully white teeth! But it can be hard to find the ‘spoons’ when I’m at my worst.

The only trouble I have with my teeth at the moment is a wisdom tooth – because all the other teeth are protected by the crowns etc. I’ve gotten used to not having much sensitivity. This wisdom tooth is affected by the Amelogenesis Imperfecta and as a result is incredibly sensitive as it breaks through the gum. Despite growing up with such sensitive teeth I’d totally forgotten how painful it can be! Hopefully it’ll come through fully soon and I’ll be able to get it sorted as well. In the meantime I’ve just got to get used to the pain.

Anyway I hope this has helped you understand another aspect of my life, any questions just let me know and I’ll do my best to answer them.

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