There seems to have been a bit of a boom in the number of books published, or hoping to be published, aimed at twenty-somethings with chronic illnesses. I'm not too sure why this is. Maybe everyone just clicked at the same time that there was a gap in the market or they started to realise that more and more younger people needed this information. Either way it's made me take a look at what I'm doing in more detail and determine why I should continue writing this and why it's unique.
I feel like this book has been years in progress. Since I was diagnosed at 14 I've written a diary sharing my thoughts and feelings that I just didn't want to discuss with anybody else. Reading through it (and trust me, there's a lot of notebooks involved) there's bits where I laugh at how silly I sound and others where I'm straight back in the shoes of that teenage girl who is terrified about what's going on with her body.
I never thought that I would want anybody else to see this but then I realised how many other young people are going through the exact same thing - terrified and believing they're the only person in the world who feels this vulnerable. I then thought about including some of these diary entries into my book. I don't claim myself to be the next Bridget Jones but I wondered how much more it could achieve by showing people, first hand, that they are not alone and they can get through it.
I would read books, newspaper reports and internet pages with huge interest and would follow their 'tips on how to feel better' but I was always frustrated when it didn't work...so it's more about reassurance and encouragement than a medical/living your life bible.
I heard a great saying the other day - "Life is not about waiting for the storm to pass, it's about learning how to dance in the rain".
And the only way you can really learn how to dance in the rain is to make sure you've got the right back-up.
I was carrying cups of tea from the kitchen through to my desk at work when my ankles decided they didn't want to walk any further and sent me tumbling down the stairs. Our new office walls are now covered in tea stains and I'm sporting some rather beautiful looking bruises and a burn on my right hand.
Aside from the embarrassment in front of my work colleagues I'm feeling pretty fragile this evening. I'm finding it difficult to breathe deeply and when I cough or laugh my ribs are really painful. I just hope that there's nothing more serious than bruising because I can't be doing with any broken bones or more pain at the moment.
Recently I've found myself struggling to do normal things that I would normally take for granted, like lifting pans or the kettle, carrying things and even climbing stairs. I often panic that my lupus is getting steadily worse, and at times I feel that things are worse since I've been on this new medication. I know I'm probably reading too much into things and I'm just a bit wobbly at the moment. I hope so...I'm really over this spilling tea lark!
At least I've determined once and for all that I can't fly...best hang up those wings!
Yesterday I received a letter saying my appeal had been successful!
I can't really describe how it makes me feel. There is no doubt that the extra money will help me out with mobility etc but there's a part of me that hates the fact that I need to rely on it. I know I shouldn't feel guilty as I have been doing my best to take care of everything myself, including working full-time, and it has just got to the stage where I do need a little bit more help.
My Grandad's wife (I've always called her HG - honorary grandma) has lupus too and I have been speaking a lot more to her recently. She has helped me see things from a completely different perspective. She told me about her experiences when she was first diagnosed and how lupus was completely unrecognised as a disability. She told me about the fight she, and many other lupus patients went through to get the DWP to recognise that they all needed help too.
The doctor told me about some household gadgets that are available to help with everyday things and I can now look into them a bit more to make the little things that little bit easier. Of course I would give anything to be healthy and not have to receive DLA at all. But in a way it's almost like we deserve it for the pain and problems that we face and overcome every day.
I have always appreciated the little things and today, despite me telling him to save money for more important things, my boyfriend surprised me with a birthday cake and candles and a present. It was more than I could have asked for. On Saturday he also took me to one of the best restaurants in Leeds, when I thought we were just going for cheap and cheerful!
Even though birthdays are not as exciting as they were when I was a child and I don't lose sleep the night before from excitement I still love them. If nothing else they are a day to celebrate you and who you are. I look at each birthday as a chance to look back over what I have achieved this past year and what I want to gain from the year ahead. When I was younger I would make resolutions on my birthday rather than New Years Eve and I often found that I was more likely to keep them!
This year? I want to learn to accept myself more. I've got used to the idea of my illness but I want to appreciate the me that deals with this. Yes, the tablets might have made me put on weight and I might hate the fact that I'm constantly pumped full of chemicals but they're helping me and that's all that matters. And I've got a great boyfriend who keeps on surprising me every day.
I'm just lucky I guess.
I was invited to a facebook group created by a mother in memory of her son who died from a rare form of bone cancer and she is trying to get her book published about his condition and his fight for life.
Ben Calvert died after a long battle with Osteosarcoma and now his family are trying to make his struggle with this made public to help prevent others being diagnosed too late. The problems his mum is facing is trying to get the book noticed by publishers.
If you have a facebook profile please join the group http://www.facebook.com/group.php?gid=17
I had my first appointment with a new specialist doctor this morning and I was there for 2 hours, which is unprecedented for me!
I have waited so long for this appointment that I was a little bit nervous. I really hoped that he would be nice and that he'd come up with a way to make me feel much better as I've been struggling a bit recently. It went better than I could have imagined.
I sat down with the doctor for half an hour and he asked questions about how I was feeling. It was the first time I've had a specialist who actually listened to me and didn't interrupt or try and put words in my mouth. I needed to talk to people who actually understood what I was going through and could help me make sense of it all. It was wierd going through all the symptoms I've been experiencing since the very beginning and him understanding automatically that it was all down to my lupus, rather than before where everyone has been rather confused about it all.
With other doctors my lupus has not really been approached, it's almost as if it's pushed to the side because nobody really understands it. Today was different. Lupus was the main topic of conversation and the way in which they want to treat me from here forwards is very much as a lupus patient. I feel much more relaxed knowing that I now have a doctor who understands what I'm going through and can help me come out the other side healthier and happier.
I've now been prescribed Plaquenil, which is new for me, and continuing with my current medication. I've also started swimming so I'm hoping that it won't be long before I'm up and running properly again. It just takes a little bit of a push sometimes.
I've recently opened my eyes to the world of chronic illness and started to see outside the lupus shaped box I've been living in for recent years. It started when I had to leave my last job because it was making me sick but I think, more than anything, it's down to the fact I now feel ready to learn exactly what Lupus is and why it affects me how it does.
My bookshelf, once adorned with the girly chick-lit novels, is now laden with library books on arthritis, lupus and living life with a chronic illness and I find myself reading through each one with interest. When I was first diagnosed I tried to gather together as much information as I could but I would just end up scaring myself. At 15 I would come across reports that said things like 'lupus sufferers can now expect to live for 10 years' and I would shut down terrified that I would never get to my 30's or experience half the things I had dreamed of. Now there is much more information available to me, much of which is more accurate and I feel ready to deal with the reality of it all now.
Reading through the books that are available has led me to big ideas for my own project that I am currently working on. Whilst I am now armed with lots of medical information and tips on how best to deal with my illness I am still struggling to find anything that is deliberately targeted at young people, in particular the age group I was when I was first diagnosed as a teenager.
Today is the publication date for a book I have been looking forward to reading. I was only introduced to Laurie Edwards' blog 'A Chronic Dose' last month but since then I have read it with great interest. Now she has put her writing skills and life experience of living with chronic illnesses into a book called 'Life Disrupted', which specifically deals with twenties and thirties. I can't wait to get hold of the book and see how she has tackled the subject. I have no doubt it will be as down-to-earth and eloquent as her blogs.
A Chronic Dose: A Chronic Illness Blog - http://achronicdose.blogspot.com
I finally applied for Disability Living Allowance (DLA). It had taken me years before I finally realised that I could use the help. Before I hadn't want to 'bother anyone' and I wouldn't believe people when they said I was entitled to it.
It had taken me days to fill out the form with a lot of help. I wasn't too sure what angle to take with my responses. I didn't want to give details of my good days because that wouldn't get my anywhere but on the other hand I was reluctant to concentrate on the bad days either. I know it's not being dishonest because at times I really do struggle but it almost felt wrong. In the end I decided to go with a happy medium and make sure I made them aware in my answers that this was changeable and some days were much worse.
It's taken over a month to receieve the response and my claim has been unsuccessful. I don't really know how to take it. In their reasonings for rejecting the claim they say that I was capable of walking short distances slowly and normally and therefore I did not qualify. I doubt they've even read it to be honest.
I feel almost like they have totally disregarded my responses to their questions. They haven't taken into consideration my bad days where I can hardly walk and need help with even the most simple of daily tasks. It feels like they don't recognise the condition that I have and almost like they have disregarded my claim because of my age. I'm getting fed up of people not realising that despite having good days and looking relatively healthy there is more going on inside me that I refuse to make public.
I know of people who receive these benefits who really do not have reason to have it. Do I have to totally over-react in order to get what I am entitled to?
I've decided to make it more general, rather than targeting just people my age with lupus and arthritis I want to make it more accessible for all young people with an invisable illness.
The response I've had has been absolutely amazing. I've spoken to a number of people who have, like me, been diagnosed young with a variety of different things and it's pretty much unanimous that more information needs to be available for young people.
I don't confess to know anything medical about chronic illnesses so I want to make it more about the people behind the diagnosis. People's experiences, information on how to deal with your illness and to make people aware that they're not alone and being diagnosed does not mean an end to your life.
The answer - nothing!
Ok, so there's the odd leaflet and support group across the country but nothing that really gets into the mind of a young person who has just been diagnosed with an illness that is associated with old people!
I just don't understand why with all the information that's out there for older people that young people are not regarded hardly at all. It is impossible to expect a 20 year old to pick up a book that has photographs of an elderly couple on the front and want to read what's inside.
It may be dramatic, but for me I felt angry and upset. Was I less important because I had contracted arthritis in my teens rather than my 60's?
So I've come to a conclusion, I'm going to write my own. I know it's going to be a long job and a lot of hard work but if it helps young people across the UK understand what's going on in their bodies better then it has to be worth it!
After all, someone has to do it and it doesn't look like anyone else is.
Up until now I've never really dedicated that much time or attention to learning all about lupus or arthritis. I think in a sense I was too scared to know all the details because then it would seem more real and I didn't really want to know what my future could hold.
I don't know what I expected to find when I visited the library, but I was shocked to find as little as I did. Now Leeds is by no means a small city but there were no books or leaflets on lupus and their arthritis section was very small. Every book I picked out on arthritis was aimed at older people, with no mention of younger people also having the disease, or parents of children. There was nothing targeted at young people themselves.
I'm now 21 and fairly intelligent but reading through some of the books on offer was far too technical and complicated for me to understand. I never really attempted to look before, but if this is what I was offered at the age of 14 I would have been terrified.
So if there's nothing available for younger people to read about their illness and how it could affect them what are they going to do? My mum is a nurse and she helped me out a lot with understanding all the medical jargon I heard every day, but not everyone has the same luxury.
I'm going to do some research and find out what really is available for people my age to learn and gain support from.
I've always been independent and would prefer to do things myself rather than have someone else do it for me. But now I'm struggling to come to terms with something completely different; letting something, rather than someone, control my life.
It's not a new concept I know. My diagnosis was now 8 years ago and I really should be used to my symptoms and how my illness affects me but for some reason I still can't. Yes, I know more about it and I know more about how I can deal with it but there is still that part of me that would rather ignore what's going on and continue as normal.
I'm finding it hard to keep on top of how I'm feeling. I'm incredibly emotional, unable to walk any distance, constantly tired and I think a part of me struggling to cope is because I still refuse to believe that this is really happening to me.
I know it's a bit late in the day to still be in denial, but I still can't help but wonder what my life would be like if I didn't have all this extra worry to handle.
Maybe it's a good thing that on finishing my previous job I have a clean break and can start afresh somewhere different. Leeds, in my opinion, is very different to Manchester. In fact I'm not sure I really like it that much, but I can't put into words why.
There's been so much going on in my life this past year, starting from leaving university and now moving to another city that's I've never so much as visited before. To be honest, I'm starting to feel a little bit unsettled. I can feel myself getting worked up about small things and I'm having a few flares that are lasting longer than normal. I've always suffered more when I'm feeling stressed, and whilst I know I should sit back and relax a bit more I just can't bring myself to fully shut down.
I've just started my new job, where I will be working on the advertising for in-store radio. It's an exciting job and my first week there I have really enjoyed. This job is much more suited to my degree than my previous and it is definately better for my health. When I ws debating whether or not to leave my previous job I would wonder whether I had made the correct decision, I can now say without a doubt that I have. I feel better in myself and I can see myself being able to live the life I want to a bit more. Not only will I have more time, but more energy to enjoy doing things I like rather than devoting it to work all the time.
So once again, it's time to throw myself into life in a new city. I think I'm going to enjoy having this fresh start and I hope I grow to love Leeds more over time.
This isn't a decision I've made lightly, it's something that's been coming for a while now. However, only now do I feel confident enough to actually do anything about it. Working 12 hour days, 6 days a week would be a strain on anybody but I've been struggling with flares over the past few months and I can't help thinking that they have something to do with my busy, physical job. I spent the majority of my day walking around neighbourhoods and talking to people. Whilst I loved being in contact with so many different people, loved everyone I worked with and the fact no day was ever truly the same I just came to the conclusion there were other, probably more sensible, jobs I could try.
My friends and family often ask why it took me so long. When I told anybody about what my job involved and the time and effort I put in every day their first reaction was always "I don't think I could do that". So why did I? Probably because I wanted a challenge and the prospect of success it offered and I probably lasted as long as I did because I hate the feeling of quitting and letting others down.
One thing I've always struggled with since I was first diagnosed with arthritis and lupus is realising that I'm not useless and just by saying that I'm having a problem with something is not making myself a failure. I almost believe that this mindset over my illness transferred into this job. I was so determined to succeed because initially I didn't think I could do it and the idea of quitting would be failing. I had to come to terms with the fact that this was not the right attitude to have towards this.
I needed to understand that I was moving on for the benefit of myself, my health and my future. Yes, this job may well bring me success I could barely have imagined but for the sake of my health years down the line it just is not worth it.
I do miss it and everyone involved. This job and the people I met there taught me so much about myself that will no doubt be of great help in everything else I do. Not only has my confidence improved dramatically, but I know now that even if I think I can't do something somewhere deep down I have the determination and ambition to try my damn hardest!
I can't really tell how well I did considering it was only my first day of training today but I know that I'm going to experience certain things doing this that I would never have thought I could manage. I've always been a little bit shy, although I could usually hide it behind a pretence at being confidence, but doing this job it's something I really need to get over. I don't think I'll have a problem talking to people so directly as I've observed people doing today but it's going to take a little bit of practice before I can do it with the confidence they all seem to have so naturally.
The opportunity within this job is really huge and I'm excited about the possibilities. However, for now I think I need to keep my feet on the ground and just to get to grips with this entry level side of it first.
The apartment is really nice, despite having boxes lying around everywhere waiting to be unpacked. It's 2 bedrooms, has a really large bathroom and a living area with a kitchen along one end. I can see us both being really happy here; if we actually get much time to enjoy it working these hours everyday.
If I'm honest I'm not too sure whether this is the route I imagined myself going down when I first started applying for 'grown-up' jobs but at the end of the day I don't exactly have anything else to be doing right now.
Darren was also offered a position in the company too, and we will be starting work as soon as we can find somewhere to live. I think it will be good for us both to be doing the same job, especially considering this one will be pretty long hours.
I'm looking forward to learning what the real world is like and having to learn how to pay bills and everything for myself. I don't know if this job is something I really think will be my future but I'm willing to give it a go and 100% for 6 months and see where it takes me.
Having spent 3 years doing journalism at university, I've now started to have second thoughts. I've always loved writing and would adore the chance to do it as a career, but writing the news is not really my thing. My heart lies with magazines and, in particular, travel. I constantly trawl through the available jobs on the internet hoping that something will magically appear which will allow me to travel the world, camera in hand and write about it. Unfortunately I know that opportunities like that don't come around very often, so I'm looking for other aspects.
Before I step foot into the big wide world and my first proper career step, I'm currently trying to find a temp job to keep me in shoe money for the next few months. I've now visited a recruitment agency who will hopefully set me up with a job pretty quickly, giving me some extra cash and a little something extra for my not-so-impressive CV.
I've been told that getting your perfect job is not so much what you know, but who you know. And especially in the media industry this is very true. I constantly wonder who my "contact" will be and whether, one day, I'll get my camera and my one-way plane ticket and disappear.
I've come close to leaving university once before. There have been many times where I've wanted to get away, or had a strop because I thought university and journalism was not for me, but it has only been once that I actually considered leaving it all behind. Since then I've always wondered what my life would have been like had I actually gone. For one I would not have met Darren, or half of the great friends I have made over this past year. Looking back on it my life would actually be totally different.
Now as it comes to the point where I have to leave my house, the university and Lincoln I'm finding it hard not to stick my heels in and demand to stay. But then I wonder whether it's the university life I'm wanting to stick around for, or my friends.
I love Lincoln. I love how it reminds me of Canterbury and I felt like I belonged here almost the moment I set foot in my Junxion flat in 2004. I love how you can wander around and guarantee to bump into someone you know, whether it's on a night out or a random shopping trip. For a university life, Lincoln is pretty much perfect. It's small enough so you know everyone and everywhere. But I can see myself growing out of it, and I'm looking forward to finding somewhere new to call home. I will always look at Lincoln as "that city I loved whilst I was at Uni", and like Canterbury, part of me will always love it.
I'm excited about the next step, and look to it as a new adventure. I've always wanted to get the opportunity to do what I've wanted my whole life and I look at finishing university as a chance to fulfil my dreams. But today, as I sit in my room thinking about my time here in Lincoln and the friends who have left, I start to wonder whether it will ever be the same again.
I never really went to big matches, partly because there weren't any near by and also because myself and my dad could never agree on which team to support which would just make things difficult.
Since being with Darren I've started to become a bit of a convert, he's turned me into a little bit of a Scunthorpe United fan.
I started to follow the results and ask the right questions, as any girlfriend would, but then I began to get a little bit more interested. So I went to my first match at Glanford Park. The Iron vs Bristol City.
Since then I haven't looked back. I don't mention the win against Gillingham, my local team, very often especially because I spent much of that game trying to hide my delight whenever the Gills managed to score. It didn't happen often so my plan was not foiled too quickly. However since then Scunthorpe actually went onto win the league, and myself and Darren went to all the home games.
The atmosphere was great. Not being a Scunthorpe girl I was still getting into it and cheering along the team like it was actually my home town. It was such an achievement for a small club like Scunny to actually win the league, when nobody had ever imagined they could do it.
Today was slightly different to the last home game against Huddersfield. The party atmosphere and the chants were the same but it was much more chilled because everyone knew they were promoted and they no longer had anything to prove.
Watching the team recieve their league one trophy was almost as special, if not more, than seeing Liverpool lift the Champions League. Not because it meant more, but to Scunny it meant the same.
Even though it was Darren who introduced me to the Iron, and admittedly had he not I would never have paid much attention, I look at them as a great club. Determination and the support the fans gave the team throughout the season was amazing. I hope they do great in the Championship next year.
It's official. I have finished university. No more lectures, essays or exams ever again. Whilst my inital reaction is 'thank god', the more I think about it the more it upsets me.
Whilst not having anymore work to do is great, it also means that very soon we will have to say goodbye to our friends and Lincoln as we move into the real world. I've been looking forward to moving for months, but now the time has come it's more than a little bit scary.
These next few months will be spent trying to find a job, trying to find a house, and clinging onto every last memory in Lincoln we can.
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