Invisible Awareness Week

Invisible Illness Awareness Week

It’s INVISIBLE ILLNESS AWARENESS WEEK!

As many of you know this is something very dear to me and very important to me, so any oppertunity to promote or educate people about invisible illnesses I will do so. So please take the time to read through it all and feel free to ask questions – however, this is my life and I do have to live with it so keep your criticism to yourself please.

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is: hypermobility syndrome (primarily knees, wrists, hands, neck, hips, shoulders), irritable bowel syndrome, rhinitis, migraines, asthma, depression/anxiety.

2. I was diagnosed with it in the year: Multiple years starting with asthma when I was 11, hypermobility when I was about 14 and the most recent was rhinitis about 2 years ago.

3. But I had symptoms since: Since birth? Hypermobility is genetic so I’ve always had it even if it didn’t show itself until I was in my teens. My asthma symptoms were all through childhood but it was only when my archaic childhood doctor left and I got a new GP that the possibility of asthma was even considered.

4. The biggest adjustment I’ve had to make is: Learning my limitations and living with them. It’s really easy to say ‘well of course you have limitations, you’re disabled!’ but the fact is it isn’t always easy to come to terms with it, especially if your illness progressed and worsens over time – or you have a condition which isn’t easily treated, therefore you suffer for a long time before someone finally is able to help you. I don’t have to just deal with one of my conditions, I have to deal with them all interacting which means I can’t just do things impulsively, I have to plan where I’m going, how and when and when I get there I need to scout out things like rest areas, lifts and toliets.

5. Most people assume:  That I am a slacker, that I’m making stuff up or could ‘do more’ to work through ‘my issues’. People don’t understand chronic pain or depression until they’ve had it themselves.

6. The hardest part about mornings is: getting my body to do its thing – I need to let my tummy settle, my emotions get their act together, not to mention waking up and not feeling extremely fatigued. Sometimes pain and stiffness can be an issue as wall but usually meds sort that out. In the morning it is my tummy that is the biggest hurdle.

7. My favourite medical TV show is: House because it investigated a range of health problems rather than just being a typical/most known one. Ok, there was the ‘it’s lupus’ ongoing  joke but the key words there are; ongoing joke. Most medical TV programs also focus on major issues or cancer, House had so many different things.

8. A gadget I couldn’t live without is: My laptop and my kindle; I can’t write for long periods of time or carry heavy things, so ebooks and having a laptop to use for lectures/classes is an important part of me furthering my education. I couldn’t have gotten through my 2nd degree and now my postgrad without it.

9. The hardest part about nights is: Getting comfortable and not stressing about not getting enough sleep. With all my health conditions it can take any one, or a combination of them, to make my nights difficult. I need at least 7-8 hours sleep and if I feel like I’m not going to get that I’ll start stressing about the next day.

10. Each day I take: As this is a public post to promote awareness I don’t feel comfortable listing my medication for all the world to see. So here’s a total of how many meds I take a day; 9 different medications every day with 4 optional, which is a total of a minimum of 17 tablets a day, plus 2 inhalers. Then there are extra non-prescription things like cold patches, massage oils, pain gels, nasal inhalers, vicks, heat pads/hot water bottles, ginger and lemon tea etc. which I will need to use multiple times a week.

11. Regarding alternative treatments I: I’ll use anything that will help me as long as it doesn’t badly interact with my medications. For this reason I don’t use homoeopathic remedies because I’m on so much meds, unless a doctor clears it.

12. If I had to choose between an invisible illness or visible I would choose: I honestly don’t think it matters – if it’s visible you still get ignorance and prejudice, it’s just aimed slightly differently. People still suffer and have to deal with things on a daily basis. Neither is better or worse – the most important thing about disabilities is that they are all important, it isn’t a competition. Just because someone can walk doesn’t mean they’re not in pain every single step of the way – something the UK government doesn’t seem to realise but that’s a different rant entirely!

13. Regarding working and career: I have 2 undergraduate degrees because after the first one I had to re-evaluate my career options. Most History of Art related jobs were either too physically intensive (on your feet a lot) or required fine motor skills that I no longer possess. Information and libraries is a sector which allows me to sit down, take my time and do things at my own pace using body parts that haven’t given up on me yet 😛

15. The hardest thing to accept about my new reality has been: Limitations as mentioned before (including future limitations such as being unable to pick up my future children), but also the fact that the UK government does not provide ANY support for young people who are in chronic pain/suffer from multiple conditions but can still walk/have all their limbs – some people have successfully fought and won, but they are a minority and it has been a hard/emotionally taxing fight. It is incredibly depressing and mind-numbingly lonely to realise no one can help you. I’ve had to go to a private physio to get the help I need to improve my life.

16. Something I never thought I could do with my illness that I did was: So much; finding someone who understands and supports me no matter what and wants to have a future with me, as well as completing 2 degrees and now working on a post grad and actually be able to consider a career in a field I love.

17. The commercials about my illness: Generally only IBS gets one.

18. Something I really miss doing since I was diagnosed is: Being able to explore nature. I love nature, I love animals and I’d love to just go out and hike through the countryside. I just can’t do it any more.

19. It was really hard to have to give up: My independence.

20. A new hobby I have taken up since my diagnosis is: Video games – I may not be able to go out and physically explore the world or jump from tall buildings, but I can explore and complete all different manner of things in video games. MMOs such as World of Warcraft have also allowed me to do this and meet an amazing bunch of people who have helped support me over the years. You guys know who you are <3

21. If I could have one day of feeling normal again I would: Honestly, I don’t know. I have never been truly “normal” by societies standards, I’ve always been a sickly child even before things got bad. As much as everything sucks the way it is, at least I am used to it and can cope with it – a day of no pain, no difficulties etc. would just make reality so depressing.

23. Want to know a secret? Invisible illness suffers can be happy, true, many suffer from depression (etc.) but if you had to deal with all this you’d be depressed too! But we can and do enjoy life, be happy, laugh, joke, mess around. We just have to fight harder for it and ya know, I think that means we appreciate it all the more for it.

24. But I love it when people: Ask me if I’m ok, if I need anything, generally actually recognise that every day I’m struggling, fighting an invisible battle. Also, if I fall over (which happens pretty damn often) don’t ignore me, or stare and laugh, help me up.

25. My favorite motto, scripture, quote that gets me through tough times is: I don’t really have one, it’s people, family and friends who care and support me that help me more than a motto.

26. When someone is diagnosed I’d like to tell them: I’m not going to lie; your life is going to change, it will be difficult but it isn’t the end. There is a light at the end of the tunnel and things will get better. You’re not alone.

27. Something that has surprised me about living with an illness is: Nothing positive to be honest, it’s more surprised me how horrible people can be. Especially people that suffer from invisible illnesses themselves; it’s not a competition, everyone’s suffering is valid.

28. The nicest thing someone did for me when I wasn’t feeling well was: It’s little things like emailing you class notes, sending you a treat or taking over your responsibilities so you can rest.

29. I’m involved with Invisible Illness Week because: this is an incredibly important subject for me and something that will be a part of my entire life. I always speak openly about my health because if I can get one person to listen, one person to learn something new about invisible illnesses it is totally worth it – or make a fellow spooney feel better and less alone, all worth it.

30. The fact that you read this list makes me feel: warm and tingly, and hoping you read it because you a) cared and b) wanted to know more about invisible illnesses rather than just being nosey to talk behind my back (yep I’m talking about you there).

If you have any questions please ask, I am always open to questions 🙂 You’re also welcome to share this as long as it’s to help others and not to mock or anything else negative.

If you own a website or blog consider showing your support of invisible awareness by joining my web clique ‘Fighting Everyday’ – http://cliques.ruby-wings.net/fight/

It’s a 2.2!

Degree

Yesterday I got my degree classification for my English Literature MA (hons) and it was a 2.2! In my previous entry I wrote about how bad I expected the result to be and honestly, I was not expecting a 2nd at all. I stared at the screen for several minutes before the hyper hysterical reality hit me and I have been on a high ever since. I am just so happy. I am extremely proud of my fellow students for getting their 2.1’s, I know how hard they worked for them – but I’m not jealous. A 2.2 is beyond my wildest dreams for four years that have been emotionally and physically difficult. I almost gave up this year, considering the idea of resitting my final year and I’m really glad I didn’t now. I’m still waiting for my individual module marks, but it is most likely my creative writing dissertation which boosted my final mark. I seriously doubt my exam results were that good.

 

They say you can do anything if you believe in it, if you put the work in and I finally feel like that is true. I had health problems during my first degree, however, they were mostly in the final part of my final year. I had to get an extension for my dissertation and that probably cost me a 1st. I was and still am overjoyed with the 2.1 I got, just as I am with this result. There are always going to be ‘what ifs’ and sometimes, especially when it’s due to health reasons beyond my control, it is easy to get lost in them. What if I hadn’t been so ill? What if I’d not missed so many classes? At the end of the day I am very lucky that it doesn’t matter. I’m already accepted into a Masters so the result didn’t matter – wait no, that is incorrect; it didn’t matter to my career, to my future. To me personally it matters. I would have been satisfied with a worse result, yet I would have felt terrible. Like a failure. Everyone around me would have told me not to be so silly, that even just completing a second degree with my health issues is a marvellous achievement – and they would have been right. I still would have felt bad. I still feel bad about my A-level results all those years ago despite holding two undergraduate degrees now.

 

Last time I got my degree classification I had just come out of a bad relationship, and while I was proud of myself, my future was completely up in the air. I had this awesome degree, loads of knowledge and experience in my mind and no idea what to do with it. No confidence to do anything with it. That was 8 years ago, and several months later I would make a choice to return to a game I still play today, the MMORPG World of Warcraft, after a chance meeting at my cousin’s wedding. There I met Chris, the amazing and loving man who has helped me through this degree and built my confidence up one bit at a time. I still have bad days, they will never go away, but I have hope and I have love. This time I am surrounded by love and support, people cheering me on and wanting me to do well – for myself.

Need to do x, y & z

Uni Updates

While thinking about writing this entry I couldn’t help but think ‘I really need to get better at blogging’. It’s a thought I had just under a year ago, and many times before that. There are so many things I need to do, so many I have done and the last year really has just felt like an ongoing list of things I need to do. I guess that is what life is about, moving from one thing to another and on a positive note at least I am progressing. It’s especially important that I remember that right now because since September I have been quite seriously ill. Not at death’s door or anything like that, but my god did I feel like it a few times. I caught the flu and for three weeks it was absolutely awful. I’ve only ever had flu one other time I can recall and I had the same reaction. It’s why I am such a big fan of the flu vaccine and have been getting it since I was 16. Unfortunately the flu vaccine isn’t a cure, and every year the doctors need to choose which flu strain they think will be the most prevalent. Apparently this year they made the wrong choice and one of the other strains turned out to be more widespread, so my flu vaccine did nada.

 

As if flu wasn’t bad enough my body decided to add to the fun; I developed tennis elbow in my left arm and had sinusitis. The flu took such a toll on my body that I developed became post viral which basically means my immune system got smashed to bits. For a while there I had pretty bad fatigue and every day I’d get up for an hour or less before having to collapse into bed with crippling fatigue. I’m still feeling post viral, which basically means I’m really run down, have not been able to concentrate for more than 15 ish mins at a time (end of term essays were great fun…), and generally feeling really crappy with every symptom under the sun. I’m  slowly regaining my health back because I have exams in May and being able to concentrate for 15 mins at a time ain’t going to cut it in a 2 1/2 hour exam.

 

I missed pretty much all my classes, including the creative writing workshops I have been looking forward to for years. Fortunately I managed to persevere and got my dissertation completed, as well as all my assignments on time. The past few weeks have been incredibly difficult and stressful, but I did it. Now just my exams and that’s my final year over with and I graduate. What I’ll graduate with is yet to be seen. I had planned to go into teacher training, however, my Maths GCSE grade doesn’t quite cut it up here in Scotland. I could go to college for a year, struggle with the one subject I find terrifying and still not get the grade. I’ve also had time to think about it and have decided for various reasons not to pursue teaching. My dissertation supervisor, the author Laura Marney, was very supportive of my writing and teaching takes an awful lot of time up. If I want to seriously pursue my writing I don’t think I have the time to do both. So I am applying for a postgraduate course in Library and Information studies which leads to working in libraries (duh) as well as publishing.

 

At present I am coming to the end of my ‘week off’ before hitting the revision. I really enjoyed the selection of texts from my term 2 courses, Children’s literature and Science fiction, to the point that they both added a pile of more books to my ‘to read‘ list. I’ve also registered with our local library at last, which is handily located at the end of our road 😛 So I am catching up on some much needed reading for pleasure 🙂  Also playing some WoW and catching up on various online projects.

And just like that it’s December…

December

I don’t even know where to begin. That is what happens when you don’t blog for several months at a time :-/ /facepalm. Let’s start with the simple stuff; I’m now 28, I am just finishing my first term of my honours degree in English Literature at the University of Glasgow. My birthday was lovely with a great night out with friends and spoilt rotten as usual. The notable presents include a brand new gaming pc which is awesome – my last one was on it’s last legs and was dangerously overheating constantly. It has been great to be able to finally play games on high quality and see them all in their beauty. The downside was windows 8 which is slowly growing on me; the handy way to view pdfs while keeping other windows open is very useful for studying and essay writing. But the lack of a traditional start menu is just ick.. that got changed straight away thanks to an addon.

The other notable present was tickets to see Nickelback live at the new Glasgow hydro. I’m still a little annoyed at the level of sneakiness employed by my fiancé Chris to ensure I didn’t get the tickets for him. During a concert related discussion in the summer he swore blind that he really didn’t want to see them, even though they were one of his favourite bands. That’s how early he was planning this! Yes, I am a very lucky girl to have someone who puts so much effort into presents and knows me so well. The concert was on 27th November and we had amazing seats. Right in the middle of the first tier facing the stage. And the concert was fantastic!

University has been a mixture of good and bad, the bad mainly being health related. It has been a constant struggle with a lot of things going on but despite that the grades for assessments have not been too horrific. My first two assignments, an essay for Medieval Literature, and a mid-term for Victorian Literature, were rushed to say the least. I ended up with a C1 for the essay which was far far better than I imagined and a B3 for the mid term. The mid term was a mini-essay comparing two recent articles on one of the texts we had covered. The aim was to evaluate and summarise while showing our own voice and the later I did pretty well according to my tutor. I am currently working on the second essay for Victorian Literature which is due next week, and I’m really enjoying it because we got to create our own questions. It feels less stressful and more of a fun challenge compared to previous essays we have had. My question is “The emerging voice of the late Victorian ‘new woman’ in the work of Rudyard Kipling and Arthur Conan Doyle.”.

I have no exams for either modules until the spring, so that just leaves this final essay. I am supposed to have two and I have chosen not to do the second one for medieval literature. As much as I would like to refine my essay, to gain a better grade, I have realised that I would be mainly doing it to prove something. To prove that I am capable of better and that despite missing so many classes I can still do well. But who do I need to prove this to? By choosing not to do the second essay – the best grade of the two essays is chosen – I am saving myself a long period of stress before Christmas. A C1 for something worth 25% is pretty good and right now I would rather relax and get better. Next term is going to be as difficult, if not more, because I will be also doing a teaching placement. This time also gives me the chance to start looking for that placement and also preparing my reading for term 2 so I can get ahead.

My health has not been disastrous, and some of it has been improving. Primarily my hypermobility syndrome because I have been seeing a private physiotherapist who has worked wonders with me. I have begun to get better muscle strength and have been working my way up from the lowest weights to about the 3rd now. And I FEEL better. I am actually able to walk now without having to constantly use my asthma inhaler due to the pain, and I don’t have to stop every few minutes. After 8 years someone has finally been able to offer me hope and help to something I thought would never get better. It’s a long journey and the next step is to begin to loose some of this weight now that my body can actually handle exercise again.

Once that essay is finished that is me done for christmas and we’re going away for it this year. We’re visiting some relatives in Harrogate before spending the Christmas period with both families in London. I also get to see my best friend who is pregnant and expecting in January! I am so excited 😀 I’m taking part in three secret santa this year; the TFL one, one over at Obsidian Butterfly an RPG I’m in and the RPG secret Santa we’re running over at Distant Fantasies: RPG Resource. We’re also currently working on a massive move and overhaul of Distant Fantasies which should be ready for the new year.

This will probably be the last topic for 2013, I may sneak another one in after Christmas. But if I don’t; I hope you all have a wonderful holiday period and new year!

All Change

Uni Updates

In the past few weeks I’ve had to change my class timetable several times, so the post I previously wrote about classes is now pretty much null and void. One of the changes I had expected; Creative Writing Dissertation is for 4th years or 3rd years doing a general humanities degree. Since I am neither it means that I don’t need to take it this year. The good news is that I don’t need to resubmit a portfolio next year; I just need to email to say I’m still interested. While I was looking forward to it, I have to admit I am a little glad of the delay. The last year has been very difficult and while I’ve been planning my novel out in my head, I’ve not actually touched it for months. So a year of getting involved with it again will really help 🙂

The other change is that I am no longer taking comparative literature courses. I received a very unprofessional and condescending email from one of the senior lecturers. There was a specific bit where my disabilities were mentioned and that is all I am saying. I felt extremely uncomfortable after this and have therefore chosen not to take the courses. I’m disappointed because I was looking forward to them, but the bad outweighed the good. It has actually worked out in my favour because it meant I was taking an extra course due to the weird 20 credits for comparative literature modules, where as english literature ones are 30 credits. That means two courses per semester, where as with the comparative literature I was doing 3-4 – the comparative literature ones lasted 2 semesters. Each english lit course is just one semester. It likewise has given me a much nicer timetable; I’m off both wednesday and thursday, with one 10am lecture on fridays.

So what am I actually taking now? I’m still taking Victorian Literature. This term it is accompanied by Medieval English Literature:

On this course Honours students will have the opportunity to explore texts from the period of Chaucer’s lifetime, when English literature exploded into life. The texts selected will be contextualised within the fourteenth-century cultures and societies within which they were produced and received. Themes and theories covered will be based on topics such as authorship, patronage, sexuality, gender, piety, personal identity, historicism, legend, medievalism, audience, manuscript production. At the end of the course, assessment will give students the opportunity to demonstrate their ability (1) to translate and comment on select passages of late medieval literary texts; (2) to discuss and locate select texts within the culture, society and linguistic and literary milieux in which they were produced; (3) to discuss the approaches and techniques available to and used by critics and commentators in the interpretation of these texts.

 

For those of you who don’t know; I did my history of art dissertation on manuscripts. Apocalyptic manuscripts to be precise. I also really enjoyed a manuscript based course I did in third year, so this is essentially looking at manuscripts from the opposite side; literature rather than art. I also took a previous medieval studies course during the same degree, so I figured this would be building up on knowledge I already have.

In term 2 I still have Humanities in the classroom, and now also Modern Literature 1945 to Present.

This course offers an opportunity to study the key writers, genres and movements of the immediate post-WWII period through to the contemporary moment. Through an extremely varied programme of lectures and seminars, students are introduced to a range of literary texts (poetry, drama, novels and graphic novels), placed in relevant historical and cultural contexts and critical debates. Students will be encouraged to read widely in order to understand the diversity and innovation that characterizes contemporary writing. Lectures will address the impact of a range of important cultural and political concerns (e.g. war, racial and ethnic diversity, national identities, changing attitudes to sex and sexuality, ecological crisis) as well as changes (and continuities) in the forms and genres through which writers have engaged with these issues.

I like my literature the opposite way to my art; I prefer modern literature, especially this time period. Plus getting to study Angela Carter, Neil Gaimen and graphic novels is just awesome.

The class changes are not the only changes. For the past month and a bit I have been working at my university as a part of the enrolment and registration support team. And as of today, that job is officially over 🙁 I really enjoyed the job and met some amazing people who I intend to stay in contact with. It just feels so weird now that it is over!

I also had my assessment with the private physio and wow, just wow. I don’t remember ever not feeling some sort of pain or discomfort, and she did some nerve work on my arm/shoulder/neck where there is pressure on the nerve. I felt pain free for a while and it was blissful. She was lovely, so understanding and not at all judgemental. So I’m just starting a new period in my life; she’s the first person in 8 years to actually help me battle against my hypermobility syndrome. I have my first proper appointment on monday, and I just hope I can go. All that time around freshers has inevitably given me Freshers Flu. I’m due a new flu vaccine and it only covers the most popular forms of flu, so this one has managed to slip in under the radar and I feel terrible.