ME Awareness Day


Yesterday (May 12th) was ME awareness day. The regular readers among you will know that one of the conditions I suffer from is ME (also known as CFS), and I’m passionate about exposing what it is really like to live with that condition. On that note, one of my new projects while I’ve been going through a very bad patch of health lately (told you I end up with loads) has been to set up a new a blog about my life. It’s much more personal than this blog, because if it wasn’t  then I wouldn’t be telling the truth. It won’t consist of post after post of whining, I’m just writing about my life and in that (hopefully) it will become obvious to the reader, the way in which my chronic condition affects my life. I really hope you’ll check it out and read it as loyally as you do this blog. I’ve named it Chronically Katie, and there are currently three blog posts for you to have a gander at to get the flavour for the blog, as well as two pages explaining more about myself and why I decided to start the blog. Please feel free to share a link and help me get the word out and give some constructive feedback.

Happy Sunday!

Link- www.chronickatie.wordpress.com

Wish you were here


In an earlier post I mentioned how I always take up lots of projects when I’m stuck in bed. As well as being surrounded by loads of books, papers, pens and my typewriter, I now have lots of postcards of Cardiff to add to the pile. What could be my new project? Well actually I’ve gotten involved with someone else’s project.

Like most people my age, I would love to travel, but at the moment I’d be lucky to make it to the cinema because of my health. And, of course, the hurdle to most people- cost. So when I read about the Postcrossing experiment, I was more than excited about it. As fast as my little achy hands could, I typed in the web address and signed up.

You must be wondering what sort of project could get me so keyed up (pardon the pun). Postcrossing members exchange postcards with each other. I would have been sold at that, I love postcards and handwritten letters. I always collect and send them wherever I go. More than that though, Postcrossing is international so members get postcards from all across the world. When you sign up, you are given the address of strangers to send postcards to, and in turn, strangers are given your address and send postcards to you.* My first postcard was from Malaysia. Members can also browse each others’ profiles and request direct swaps. I am feeling very popular because I have already had a few such requests.

As though it were made for me, Postcrossing combines so many of my favourite things. The founder, Paulo Magalhães, is bringing back the wonderful tradition of handwritten postcards. I can’t wait to learn about the lives of people all over the world. How can you have possibly finished this blog post without clicking onto the site to sign up?

As a special offer I will send a unique postcard about where I live for the first three people to request it.

Do you like sending postcards or are they redundant with texts, emails, Facebook, etc?

For more information on Postcrossing, visit the website www.postcrossing.com

*For those of you who would be concerned about posting your address on the internet (and you are right to be), your address is not published on your profile but only given to members who are selected to send postcards to you. Clearly it’s not full-proof but I feel ok about a few random people who lives hundreds of miles away being given my address and nothing else.

When the chips are down


In the last few weeks I have gone through a really bad patch with my illnesses. Whenever this happens, I try to keep my spirits high by forming habits like writing down three things everyday that I am thankful for, or a list of activities I can do when I get bored. At the moment I’m trying to think of easy one-day projects I could do.I love little projects, especially creative ones, but I often get bored before I complete them so I’m trying to stick to attempting do something which will only take one or two days, and not much energy. We all have little things we like to do when the chips are down, what are your favourite things to do when you’re sick? Any ideas for my one day projects?

The people behind the illness


ME and fibromyalgia doesn’t mean gradually getting more tired and in pain throughout the day or having occasional days but it means pushing through the exhaustion and pain several times a day. I have to find something in myself to push through and get out bed, to answer the phone, to get to lectures. It means constantly making compromises and never being a good girlfriend, sister or daughter because you always end up not calling someone on their birthday or missing the party, not getting someone a card, never replying to the text or phone call, missing the presentation. Constantly, constantly, constantly apologising and canceling. Having a chonic illness means you’ll never be a woman of your word but always unreliable. You’re always trying to make the decision between being the person who never accepts an invitation or being the person who never turns up. I am so lucky to have a partner who loves me despite the birthday cards and parties he never got. I’m lucky enough to have a sister who loves me despite never getting to be the one who takes the lift instead of the train. A best friend who continues to be just that despite all the unanswered texts, emails, letters, calls, despite my absence when she needs me and despite my never having visited her once, although she travels hours to visit me. I am lucky enough to have parents who will look after me like a toddler when what they really need is for me to be strong for them.

Thank you.

Carers’ rights day


Today is carers’ rights day, having an amazing carer I am happy to celebrate this day. Nonprofessional carers (by that I mean not employed to care) are among the most vulnerable society, in some cases they are far more vulnerable than the person they are caring for. In most circumstances they cannot get a university education or if they do they are not paid for the hours of care they are giving, pushing them in debt. Even when the government does give them benefits they earn a mere £1.58 per hour for the hours the government acknowledges they do (often the amount of hours acknowledged are way below the amount of hours actually spent on care). This should make you angry. Our carers need and deserve so much more than that. Please send messages of support to our carers today in the comments box below or by tweeting with #CarersRightsDay harsh tag.

For those of you who missed it, my carer, wrote a very informative article about being a student and carer. You can read it here.

Think min.wage is bad- try working for £1.58 an hour…


…no I’m not talking about sweat shops. I’m talking about being a carer in Britain today. We criticize developing countries or big multi-national companies for failing to pay wages which cover the basics- while I’m completely behind that- did you know that all over this country the state knowingly abuses carers? Knowing that carers won’t fail to help their dependents but the state uses them as free or cheap labour. Refusing to pay them an amount that will come close to covering the basics, if it pays them at all, means that quality of life for carers is usually very low. There are so many criteria through which many people working more hours than a full-time job fall through and are not paid at all. My carer, Paul Wilkinson writes about his experience as a carer and a student.

The 2001 census revealed that 1.9 million people provide over 20 hours of unpaid care a week with 1.25 million providing over 50. The 6 million who are paid using the carer’s allowance benefit receive £55.55 a week for providing over 35 hours of care, which works out to disgustingly low amount of £1.58 an hour!

These grim statistics are accompanied by the disturbing revelation that carers themselves are twice as likely to become long term sick or disabled as the average person.

I’m one of the 1.25 million who provide over 50 hours of unpaid care to a loved one. I want to look at the problems faced by carers and the help, or rather of the lack of help, available to them. While I could write endless pages about the plights of the disabled, and rightly so, in this case I want to stick with what I know firsthand. The problems faced by the disabled and carers are, however, interwoven so from reading this I hope you will gain an insight of both sides of the coin.

source: kingston.gov.uk

First things first, it’s important to note that not all disabled people will have carers. Some manage perfectly well without the need of care, or at least get by with relatively little care. Others don’t get the support even if they desperately need it.

A carer has a lot of pressure on them. They are ultimately responsible the well being of their dependent. They are required be on hand literally twenty-four hours a day, seven days a week. Some have to be ready to wake up at any point in the night and then to be completely alert throughout the day because one mistake could set the dependent back months. That’s one of the worst things about disability. It can take someone months, even years, to reach a certain level of health, however only a small mistake to send someone back to the beginning. Due to the lack of provision to support carers, you are essentially never allowed a day off, and definitely not a sick day. I manage to get away for a couple of hours a week but that’s simply not possible for a lot of carers. Insufficient support for the disabled puts a huge burden on carers, and I’m sure a lot of disabled people would agree that sometimes their carers bare the brunt of consequences when systems or other people fail to play the role in help they promised or when the state fails to provide the right care.  This is increasingly becoming a problem for a lot of people because of government cuts. Anyone who works with disabled people knows that often benefits and additional support is cut when clearly that person is in dire need of the support they were getting.

A good example of this is where DLA is cut for people with immobility issues, part of the support they get is specially adapted cars. When the benefit is cut, they lose the car and therefore their independence, meaning that a carer (if there is one) needs to do all of the things the disabled person used to manage to do for themselves. It’s a frustrating cycle.

Many struggle to be able to leave their dependent to go to lectures, so to work, is out of the question. Inevitably, the financial pressure on them can be overwhelming.

If you are a full time student and a carer, whether it is for a parent, sibling, partner or child, the cold reality is that there is no financial help for you. Absolutely nothing. Often when I have made this claim people refuse to believe it. Even professionals (doctors and Support Centre Staff) tell me that it can’t be true. I often get told, for example, that I could just apply for Carers Allowance. It turns out, that in all their wisdom, those running the country decided that you are not entitled to carers allowance whilst in full time education.

This technicality has had massive effects on young people’s lives. For example, imagine an eighteen year old caring for a disabled parent. This 18 year olds household is financially reliant on the Carer’s Allowance, because it is increasingly difficult to live off the government’s support. Despite the popular impression of the ‘comfortable’ life that people have on state benefits, those who are reliant on Disabled Living Allowance, Carer’s Allowance or Incapacity benefit seriously struggle to stay out of poverty. This is something which is getting worse with the disabled being targeted disproportionately in the government’s austerity measures.

Now he or she has ambitions to study at university, however, how can they do so if it will mean losing their allowance and their family falling into poverty? In an impossible situation where the carer is ultimately restricted in a personal and professional capacity. The same restrictions apply to all carers who are trying to find an occupation that could fit with their care responsibilities.

This not only effects the carer, but puts the dependent under a lot of pressure forcing upon them an unnecessarily burden of guilt. Which in turn usually leads a worsening of their symptoms, meaning the carer has to do more, and so the awful cycle goes.

14year old young carer helping her mom

14 year old carer helps her mum Image via Wikipedia

For student carers there is also very little educational support available. When a carer is up all night with a dependent, has to take them to medical appointments, or is unable to leave them alone due to ill health; there is no access to, for example, note takers, lecture recordings or similar resources that are made available for people with medical conditions. Ultimately this means the carer’s work suffers significantly without any recognition from authorities that they have any kind of disadvantage.

It isn’t all doom and gloom. In my experience, University staff have been incredibly helpful and supportive. I’ve been given extra support from lecturers, personal tutors and my head of year and have been offered extension on essays and an exam schedule split over the normal exam period and the re-sit period. I cannot speak highly enough of the individual members of staff who have gone out of their way to help. The problem is, is that this is support has been down to the individual’s discretion. With disabled students, law states that universities do all they can to make sure that they are not disadvantaged. Also, for disabled there is Disabled Student’s Allowance which is used to fund support workers that go to lectures on their behalf.  No such thing exists for carers. Ultimately, a carer’s life can focus around the life of the person receiving the care, if that person suffers an unpredictable illness, such as fibromyalgia, then the carer’s life too is unpredictable. Attempting to fit in full-time care around a full-time university course means being incredibly efficient and organized- that’s something I’ve had to learn. When the system or the routine fails because of a ‘bad’ day then things can easily go into disarray, in many cases, carers either fail or prepare properly or even fail to attend assessments. Until there is official recognition for carers, they are always going to be in a precarious position.

I must stress that I do not intend to give an impression of carer’s being more hard done by than disabled students. Disabled students face a massive uphill struggle in university. My comparison is merely to reflect what could be done to help carers level out the disadvantages they face. Also I don’t mean to paint a picture of a carer’s life being miserable. It suits my purposes, however, to focus more on the disadvantages one might face than the aspects which are rewarding.

There is a massive lack of awareness of both the disabled and carers in university and in the wider world.  Something which I hope will be addressed soon in order to give some of the most vulnerable and most gifted persons an equal opportunity to excel in life.

One of things I have seen frustrates Paul the most is that not only is there not a forum to voice your frustrations and affect change, but very few people care. He said to me this morning that he could tweet all day about carer’s allowance and no one would reply or re-tweet but if he wrote about Justin Bieber he’d get tons. Thanks for reading this post- will you help to raise awareness?

Justice will not be served until those who are unaffected are as as outraged those who are – Benjamin Franklin