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

SIMPLE PLEASURES: everyday life


Our normal routine, our everyday life is the very simplest of pleasures that most of us miss. It’s an awful irony that we only realize how blessed we were every single day, when something awful that puts those things into jeopardy. It’s only when someone has an accident that results in paralysis that they realize how lucky they were to live without a disability. It’s only once you get ill that you realize that you took a good night’s sleep for granted. For me, I’ve come to realize how lucky I am that I only have fibromyalgia and CFS/ME. This hit me one day on a hospital visit, I was looking for the right ward when I read ‘teenage cancer’ on the sign and right there and then I thanked God that wasn’t where I was going that day.

I found out recently that a family friend has been diagnosed with pancreatic cancer. Although I am not close to this person or his wife, they are my parents friends, this has caused me a lot of grief because I can’t imagine how painful it would be to lose Paul. I think about all the things they’ve already done for the last time without knowing- the last holiday they went on, the last birthday. My parents are going through an awful time in nearly every area of their life but they have each other. I know that I would take any suffering if I could have Paul with me. These friends have lived a good, comfortable life but I know all of that will feel empty when she looses her husband.

This is something Gretchen Rubin tackles in The Happiness Project. It seems too morbid a topic to have in such a book, but realizing that bad news is only ever a phone call away makes you realize how lucky you are. None of us are exempt from the call telling us a loved one has been in an accident or that the test results are not good news. In a twisted way it is other people’s tragedies that make us thankful for what we have. Nothing can bring us security, we can work all our lives for a retirement fund that disappears in a few days in a global banking crisis or loose all our possessions in a house fire or natural disaster. We tend to think that because we worked for something then we deserve it, and we do, but just because you bought it, because you’re a good wife or husband, because your parents love you unconditionally does not mean it will be there forever. In reality we never really own anything, it can be taken in an incident is what I’m trying to say.

In my Church, we have a saying- everything is a gift. Don’t take anything for granted. We can’t live everyday as if it were our last, I’d have no money for starters and I would spend a lot of time on tearful conversations and making funeral plans. But, we can live a fulfilling, satisfying life. In the Bible it says to live life in all its fullness, sometimes that means doing not very fun stuff like being good with your finances so you have a roof over your head, but I’ve learnt not to see these things as a drag, I am so thankful that I have money to pay my gas bill, unlike many people right here in the UK. Instead of seeing things as a drag, I turn it on its head and I see the blessing, instead of missing the blessing. It may sound saintly but I’m happy than I’ve ever been. The other morning, I woke up really early in pain, instead of moaning at how unfair this is and how tired it made me, I thanked God that being in pain meant I finally got around to doing some stuff. I have a really short attention span and a bad memory so it takes me so long to get around to doing stuff so being stuck in the bathroom made me do some internet shopping I needed to get around to. Later on, I feel asleep with my head in Paul’s lap, usually he can’t sit down for more than a couple of minutes but because he didn’t want to wake me, he chilled out on the sofa watching TV, something he barely ever does.

So, thank God or the universe or just be happy that you are so very blessed today, no matter how little you have.

My staycation update: becoming a tourist on the streets I walk (or wheel) everyday


In July I wrote a post about making the most of your summer (read it here if you missed it) and another about my staycation in Pembrokeshire with friends– now, as promised, I going to update you on how Paul and I have become tourists in the city we have already lived in for two years. We began, as I always do, with a list, a very long list, firstly, to get the old cogs turning we thought of all the places we have been once and said we should definitely go again, and then of all the places and things we have wanted to do but have never go around it. It is a very big list (and Cardiff isn’t even a big city) so I won’t tell you all about it in one post. I’ll tell you first about one of my biggest passions….FOOD

Part one: Fashionable BBQs, takeaway picnic and A LOT of ice cream on the side

Hunting for our Central Perk

You may have noticed from the name of this blog that I like coffee (LOVE coffee), and that I also really like coffee shops. I am really picky when it comes to coffee though, in fact whenever we go over to someone’s house Paul always tells people not to bother making coffee for me because I won’t drink it, my daddy is the same so it must be in my DNA. Finding a favourite coffee shop has been a bit…impossible, and we usually go out for coffee with friends, all of whom have different tastes so we haven’t become a “regular” anywhere. I knew if I was going to get through my studies and writing this summer, I’d need to find somewhere that just visiting would excite me and feel like a treat. So out the notebook and pen came and we made another list (list 2) of all the places we have been for coffee and rated them and then all the places we haven’t been and then we began going through the list in search the best. Off we went in week 1, trying this place first, then that place, and then- well… actually place number 2 stuck- ironically it’s called No.1 Coffee. I already have a summer drink and flapjack that I am literally addicted to and I love their coffee (I buy their coffee beans too) so when winter comes around I won’t jump ship. Like most writers, I’m really sentimental about going out for coffee, I like a place with nice big comfy sofas, antique bookshelves with old books for you to peruse and far enough away from the centre that it’s not plagued by families and teenagers but close enough to my house that it’s only a few minutes walk- this place ticks all the boxes, plus it has lovely places to sit outside and big open bay windows for the breeze and sunlight to come in. That was pretty easy for an “impossible” task.

The Great outdoors

Men love taking over the BBQ

Next up picnics and BBQs which I absolutely love but living in Wales (where it always rains) you don’t get many opportunities and need to take them when you can. This evening Paul and I packed up our lovely new picnic set (and fashionable) and matching blanket we bought on sale, our little BBQ and headed over to the huge park in the city centre- Bute. We went in far enough so that we wouldn’t be shaded by the trees and couldn’t hear the traffic and made an absolute feast. The thing about visiting parks, even the same ones over and over again, is that they’re different every time you go there because the seasons change whatever lives and grows inside them. I have to say, Bute Park is pretty damn brilliant as far as city parks go though. It was owned by the Bute family who also owned the castle and so the grounds literally stretch for miles and miles and miles, whenever I go there I discover new pathways, rivers, and even once a cafe. I haven’t even come across the boat dock yet.

Picnic in the park, brought to you by Nandos

Tucking into some strawberries and cream

We took our fashionable little picnic set and blanket to the castle a few days earlier but being wheat intolerant it’s not very easy to pack a picnic so we threw in some bits and bobs and planned to get food to take-away from somewhere. We had our Nandos loyalty card all filled up so we got some yummy chicken and had ourselves a picnic inside the castle walls. All of my nature-loving, out-doorsy friends would be horrified that I did this but I know all of you who hate soggy salad and sandwiches with extra sand will think it’s a brilliant idea. There are so many chains that will do takeaways if you collect now so why not go and eat it in the sun with a chilled drink instead of sitting inside or on some uncomfortable furniture out on the street (practically)? I always feel like I can’t read at the table in restaurants and I definitely can’t sunbathe.

NB: please pick your rubbish up though, it’s just not cool leaving litter in nice grassy areas.

“I’ll have two ice cream sundaes please, what are you having Paul?”

Last bit, another of our favourite new routines is Cadwalders’ ice cream sundaes. I am a coupon girl, there are loads of discount and voucher websites and apps to use, one of my favourites is VoucherCloud. It picks up your location and lets you see all the offers you can get in the area, you can store your favourites in ‘my wallet’ so it’s easy to find the code to show the cashier. At the moment they have 2 for 1 on ice cream with this welsh company who have parlours all over Cardiff. We’re big lovers of ice cream, and with 2 for 1 it’s a cheap treat. One of the most impressive ones we’ve had so far is Tutti Frutti- check it out in the picture!

Cadwalders tutti frutti sundae

It is definitely well worth visiting new foody places or places you’ve been before and finding your favourite so you enjoy every single visit, most places have a loyalty card or you might be lucky like me and find it has an offer on almost permanently.

Hope this post has inspired you to dig deep in your local area and make the most of your summer by finding a place you just love to visit over and over again. Not to mention that it helps support the economy in your local area (which let’s be honest it really needs at the moment).

What have you been doing with your summer? Do you have a favourite picnic spot or are you a regular at a coffee shop? I’d love to hear what you’ve been up to over the summer and any great ideas you have for tourist-ing in your own city.

I know what you did last summer


What will you do this summer?

What will you do with your summer? If you are in education, summer is a big stretch of open time, this might be one of the only times you can throw yourself into something you love without any responsibilities. Summer is not just for us students though.

My university newspaper had a series of features by different people who explained what they were doing this summer. Some were big exciting travels, others had internships but you don’t have to do something massive to make this summer count. You don’t have to do the traditional things, you could do something as small as reading that book that’s been gathering dust or learn how to make jam- or even something less geeky! Even if you’re not student or do have lots of responsibilities take advantage of the long days and that bit of extra energy that everyone seems to magically acquire in the summer. I have a friend who is finishing her novel, my boyfriend is learning to drive. One of my biggest goals is to do all of the things I said I would do when I moved to Cardiff and never got around to. Even though I still have essays and exams I am also going to attempt some stuff that I almost don’t want to share. I am going to bite the bullet and finally set up my own Etsy shop. That’s the reason behind the lack of ‘homemade’ posts, I have been throwing all my creative energies into making products. Well now I’ve shared, it’s your turn- What will you do to make this summer count?

A holiday even you can afford!


In yesterday’s post I mentioned that I had been on holiday.

Outside St.David's cathedral- they always pose like that

When I told people I was going on holiday, they assumed I must be going abroad, but I didn’t, I went to a costal county of Wales called Pembrokeshire. More specifically I went to a little town called Broad Haven. Since the recession, magazines and newspapers inform me that staycations are becoming more and more popular. It’s a cheaper holiday, arguably ethical (helping the local economy), but it is also a lot of fun. My experience taught me that you can have a great holiday without spending a lot of money.

My friends and I stayed in a self-catering lodge which had a beautiful scenic view and a veranda, a lake for fishing, a child’s play area (my boyfriend loves rope swings)  and big open grassy space to play in. The boys went fishing a lot, we had a bbq and sunbathed on the veranda, we had rugby golf on the common land, played murder mystery in our lodge, and each night we took it in turns to make very nice dinners. We managed to do all of this for no extra cost to our accommodation. As we went out of peak time we had the lodge for a very cheap price, but even if we had gone during the school holidays it still would have been an absolute steal. Having a self-catering lodge meant that we didn’t have to spend lots of money on eating out, and as we each only cooked one night, everyone made a big effort, it was like having a dinner party every evening, and much cheaper than having dinner in a restaurant. Lodges, B+Bs, and family run hotels are sometimes not much more expensive than camping or caravanning so it’s worth looking around, especially if you are not the sort of person who appreciates living in the great outdoors.

This sunset was free

Once you pay for accommodation then you don’t need to spend loads of money on day trips, you can go to the beach, to parks, go on costal or countryside walks, all for free. A lot of the attractions (museums especially) in Wales are free so we didn’t have to pay many entry fees, we might even have spent less while we were away than we would have in a usual week. If you have a family (entry fees get pretty expensive when you’re paying for four) or are really strapped for cash then visiting these attractions would be perfect.

One evening we played murder mystery

We were pretty lucky with the weather but on a rainy day we went to Pemberton Chocolate Farm because it was indoors, the tour would have been £4.50 but we skipped that and paid 50p to design our own chocolate and then looked around the free museum and cinema. Other rainy days we stayed in doors to play games (Twister was lots of fun) and watch movies, so weather shouldn’t put you off of holidaying in the UK. Don’t underestimate how relaxing it can be not to have to work through your to-do list every day, you can just read a novel or magazine without having to worry what you should be doing around the house or running errands.

We might have bought a treat in the chocolate shop...

We did take a day trip to St.David’s, the cathedral didn’t charge to go in but just took donations. It was a really sunny day so we got chips and ate out in the sun, but for a cheaper alternative you could take your own picnic, especially as you won’t feel bad buying an ice cream then! Just looking around the city and visiting the galleries was a fun day, you don’t always need to go shopping. My boyfriend and I collect postcards and fridge magnets where ever we go, it’s a cheap way to buy souvenirs that will mean we remember our holidays. Instead of spending a lot of money on buying gifts for every man and his dog, it’s much more personal to pick out postcards you think the each person will like and send them a little message while you’re away.

If you were feeling crappy that you’re not going to have a holiday this summer, I hope this post inspires you to do a bit of research to see if you can change that. If you really can’t afford to go away though, I am also going to attempt being a tourist in my own city so watch out for posts about that. And, of course, I would love to hear all about the staycations you have planned or have been on. Happy holidaying!