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.


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.

The next step on my journey

Although I didn’t expect to learn much through doing my fibro awareness posts, I have. It’s the first time I’ve ever been in contact and chatted to other sufferers and it’s been a bit of an eye opener. It’s made to realise and come to terms with the fact that part of the reason I always feel so rushed, panicked and like nothing is getting done properly is because I’m trying to live a life which would be very busy without any illnesses, let alone someone with CFS and fibromyalgia. It’s not giving up to admit that and neither is tailoring my life so I’m not stuck in a cycle of depravation- always over-doing it, paying the costs and then being frustrated because I can never sustain a schedule.

Things have got to change. Part of that was actually writing down my “ideal” schedule- exactly what I would want to achieve everyday or every week- it was ridiculous so I’ve put some stuff on the backburner for now instead of trying to do everything at once. In honesty, that wasn’t enough, even after I cut out as much as possible, it was still obvious that I would still be doing too much. I had to make some tough decisions in reducing my work load in EVERY area of my life, including this blog. I have never been able to post as much as I always planned to on this blog and by rushing posts, I have sometimes compromised quality (if I’m honest)- re-reading some of my earlier posts made that obvious to me. I am, therefore, cutting back the features on this blog to what I think are the best parts and you may be seeing a few less posts on here but I promise to make them really good. I really hope my readership doesn’t go down as a result of these choices, I love each and every comment and subscription. It is a great moment in every bloggers life when someone signs up to be notified when a new post is published. It’s even greater to look back over the first year of blogging and realise how much more successful your blog is than you’d hoped and how it has grown.

Part of being a good blogger/writer is knowing what works and what doesn’t so I won’t be posting any more film reviews or sports time posts regularly, I will, however, be leaving the pages up so you can access old posts and I won’t completely close the door on the possibility of the occasional post in these areas.

And, I will be adding a new feature- inspiration of the month. Every month I will be choosing a person who inspires me and I’ll write a post on them and why they inspire me. If you know someone inspirational who deserves to be honoured then please contact me on the email address below- I am open to all submissions.

As you read in an earlier post, I launched my own small business this summer (eek!) called Pandora’s Box. In brief, Pandora’s Box grew out of the home-made posts on this blog. More and more I’ve realised my passion for vintage/retro items and remaking old things into new is something I want to share. Vintage shops and markets can be really expensive and so can handmade products so part of what I do is making sure all my products are really affordable, meaning that my products are cheap but I don’t make a huge profit but I’m ok with that for now. I love individual things but my flat is small and I can’t fit it all in so I’m happy to pass on vintage finds and home-made treats to happy customers. You can find out more about it and view items on the page here. I will post updates here on my blog for you to see and if there is anything which you love in a home-made post but for whatever reason don’t make yourself, you can request me to make it for you in the comments section on the post or on the Pandora’s Box page.

Related to this, as part of the Etsy community, I come across other great and very talented sellers- look out for posts for my favourite Etsy finds.

Most of all, I’d really like to take on guest posts, I welcome any and every proposal so whatever you feel you might want to put on screen and have published here, you can get in touch with me by email:

Thank you loyal readers,

Katie x

Fibromyalgia awareness week

When I posted a link to my ME story I had no idea the huge amount of messages of support I would receive through various forms of social networking. This has really encouraged me to share a bit of my personal health issues and use this blog to raise awareness.For about the past year or so I have had to keep increasing my dosage of painkillers (particularly after my DLA medical examination), for a long time my muscle pain seemed to get worse and worse. Last year it became blatantly obvious to myself and my doctor that my symptoms, particularly my pain levels,seemed incredibly extreme for a ME/CFS patient. My doctor knew that even though it was doubtful I would find a cure, I needed a proper diagnosis. Various hospital appointments and tests revealed what I had suspected and feared, I had also developed fibromyalgia in addition to my pelvic pain and ME/CFS. Last Sunday was the beginning of fibromyalgia awareness week and I wanted to use my blog to raise awareness about this little known illness. I really hope that you, my readers, will be as welcoming and willing to learn about this condition as you were when I published my ME story. I’m going to publish a few different posts telling not just my story but those of other sufferers and the inspirational way in which they manage to cope with their condition. I was hoping to have started these posts on Sunday but in true Fibro-style I haven’t been able to manage getting any up until today so the posts will probably continue a little past Saturday. Please help raise awareness by sharing this post on Twitter, Facebook, Linked in or on your blog.

Like ME/CFS, fibromyalgia is an invisible illness and there are few physical symptoms, it isn’t necessarily easy to spot a sufferer (or fighter as most like to call themselves). In this post, I want to share what exactly fibromyalgia is. I’ve adapted this information from various patient leaflets, websites, etc.

What is fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment. If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.

Note: It is important to notice the distinction between the levels of suffering of Fibromyalgia patients and to recognise the different ways in which a patient can both suffer and manage their illness. Some are able to manage with a slower pace of life, others like me are confined to wheelchairs or worse still bed-bound. Put simply-everyone is different.

What causes fibromyalgia?

The actual cause of fibromyalgia has not yet been found. Over the past several years, however, research has produced some insights into this puzzling condition. For instance, it has been known that most people with fibromyalgia are deprived of deep restorative sleep. Although I sleep really deeply, no alarm can wake me up, research shows that my body never goes into deep sleep but is disturbed.

Research has identified a deficiency in Serotonin in the central nervous system coupled with a threefold increase in the neurotransmiter substance P, found in spinal fluid and which transmits pain signals.

The effect is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness. It is hoped that more research will discover the cause and result in more effective treatment.

Current Treatment

At the present time treatment for fibromyalgia aims at reducing pain and improving sleep. In other words, some of the symptoms are being treated, rather than the condition itself.

Pharmacological management

Over-the-counter medications may help relieve the pain of fibromyalgia but severe pain may require the expertise of a pain clinic.

Medications most often prescribed for fibromyalgia are tricyclic drugs also used to treat depression although doses for fibromyalgia are much lower than for depression. In some cases these drugs will help both sleep and pain.

However, many people find available medications either insufficient to control their symptoms or difficult to tolerate due to a high incidence of adverse effects.

Support from family, friends and other people who have fibromyalgia is extremely valuable to those who have fibromyalgia. Professional counselling may help some people to cope with this illness and to take an active part in their own treatment. For more information on medications please visit

Learning to manage the condition seems, so far, to be the most successful way of dealing with fibromyalgia.

A combination of heat, rest, exercise and reducing stress can enable some people with fibromyalgia to maintain a productive life.

Managing Fibromyalgia

The best way to cope with fibromyalgia is to use a number of techniques that ease the symptoms as much as possible.

Relaxation is one technique that works really well for almost everybody with fibromyalgia. It reduces tension in the mind and body right away. The results are calming for all the symptoms, especially for the pain. Relaxation can be learned from books, tapes, videos or special courses.

Heat is important. A hot water bottle and hot baths or showers will help reduce pain and banish morning stiffness. Soaking hands and feet in hot water for a few minutes can ease their aching.

Although no particular diet has been shown to help fibromyalgia, a healthy, balanced diet is important to provide protein, vitamins and minerals. It is best to avoid or at least cut down on coffee, tea and alcohol. Some sufferers have a tendency to gain weight and this can be distressing in itself.

People with fibromyalgia can have good days and bad days. On a good day it is important to pace yourself; overdoing it may simply make matters worse. Rest is also important.

Other symptoms

Besides pain and fatigue, fibromyalgia symptoms often include:

  • unrefreshing sleep – waking up tired and stiff
  • headaches – ranging from ordinary types to migraine
  • irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
  • cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
  • clumsiness and dizziness
  • sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
  • allergies

If you’ve read this entire post, thank you so much! I know it’s pretty long and probably not very interesting but there is no easy way to describe fibromyalgia. Look out for more posts coming soon which will give you an insight into the lives of fibro-fighters including interviews with other sufferers and “the secret language” of auto-immune and neurological disorders including fibromyalgia, ME/CFS and lupus.

The state is disabling the disabled

This guest post was written by my boyfriend and carer, Paul. He is only 20 but is my full time carer, I won’t go through the indignities of listing all of the things he has to do for me everyday, but trust me when I say everything, I mean every little thing. I suffer from invisible illnesses so even though many people have told us there is all sorts of help and support available, this simply isn’t true. I get some level of DLA but the real amount of care I need is not recognised by the DWP. The state will not provide the support I need, my parents are ill themselves and not in a position to care for me, and now I am lumped into the category who are thought t be unfairly claiming DLA. I may not look unwell, when my friends see me, it’s hard for them to see any difference in me, but my doctor told the DLA my medical record, how I turned up at her office screaming in pain, and in my pyjamas, but that doesn’t make any difference. The truth behind the cuts to disabled benefits is ugly, and I can’t bear to write about it myself so Paul has written a guest post telling our story in the hope you, the reader, will listen and stand up for all of those too ill to fight for the support they need.

This week the Department of Work and Pensions have announced figures finding that only 7% of incapacity benefits claimants that they have tested are ‘unfit’ to work; 17% could work with the proper support and 39% were moved to Job Seekers Allowance.  Before you sharpen your pitchforks and light the torches I urge you not to take these statistics at face value. These findings are clearly bias at best.

Firstly, consider that the government have committed themselves to cutting the cost of benefits on the state and helping get the sick back to work, giving targets not linked to any research, so for example the government intend to cut say 17 people, they will find a way to cut those 17 people. The government want reduce the Disabled Living Allowance (DLA) bill by 20%, unless they’ve discovered a universal miracle cure for people’s illnesses, it will mean that some of the most vulnerable in society will be placed in an even more precarious position. DLA is not intended for people who are not working, it is given to all disabled people in recognition that they have extra costs and difficulties in their day-to-day life, for example people whose mobility is severely restricted are able to borrow a specially adapted car so that they are able to drive, this obviously helps disabled people into work, it is not free money, it is the support urgently needed. Only those who go through the invasive, degrading and timely system are able to get it. Incapacity claimants receive a higher income than those on Job Seekers and since May 2010 the government has attacked the position of the disabled through cutting. In light of this I find it hard to see how the intentions of the DWP can be viewed as legitimate.

As a carer, I have witnessed the application of disabled benefits and medical testing first hand. I can assure you that the process is far from neutral. The application itself is ripe with questions designed to ‘trip up’ claimants. The most scandalous part, however, is with the medical tester. They are committed under exaggerating the level of an applicant’s illness. They will look at a claimant looking to prove they are fit to work. In my experience, part of the reason why my girlfriend was refused was because she smiled, we were astonished to see that in her report. Even more incredible was that the examiner noted that she seemed very awake and alert even though she was actually sleeping in the waiting room when she was called. Additionally, few people are approved for DLA because of one disability or illness- it is well known that several disabilities are needed to get approved.  As a result a large number of applications will go to appeal, even when it is obvious that they are certainly too ill to work, and 39% will be overturned. The testing is thorough and always pitted against you. The system works on the assumption that you are lying unless you can prove otherwise, even letters from doctors are ignored a lot of the time. The DWP no longer carry out tests at patient’s home, as recognised by a recent parliamentary paper, it is incredibly difficult for a lot of very ill people to even get to the medical examination and often has a negative impact on their health. For Kate, she was pushed incredibly far beyond what her body could cope with at her medical examination in October, and she has never fully recovered, her medication dosage had to be doubled. The idea that 93% of those who had gone through the process, and managed to be approved, would be fit to work and had fooled the DWP is absurd.

The figure for 36% dropping out of the process also needs to be seen in context. Do not interpret this as 36% of claimants dropped out because they don’t have a legitimate claim. A large number of applicants will be suffering from mental health problems meaning they won’t have the capacity to complete see the application through. Unassisted the process can be overwhelming for those unable to work. Social services are very over-stretched so it is not always possible for to get a social worker. I heard of one case where a man whose mind had been classified as that of a three year old  lost his DLA payments, how is sufficient care going to be provided? And who will support the disabled who are no longer able to be independent without the aids they are lent?

For the 17% that could work with sufficient support. What level of support would this require? And where is this support going to come from? If it is employers responsibility to provide the facilities then where is the encouragement to hire someone with such extensive needs? DLA was created to provide this support. And with rising levels of unemployment who will employ a disabled person who will need lots of support, at the cost of the employer?

If these figures tell us anything, it shows us the intentions of the government and the DWP to cut the cost, no matter what the consequences are. Empty statistics such as those published this week are all about justifying the cuts to the public because they know that those on these benefits are not well enough to make their voices heard. Will you stand up for them?

ME story

At the beginning of this academic year I found out that the ME charity, Action for M.E. were looking for patients with Chronic Fatigue Syndrome (CFS, sometimes referred to as M.E.) and Fibromyalgia to contribute to a section of their website they were developing students. I decided to share my story with the CFS community, you can find my article here. I encourage you to have a look at all their website to find out more the condition, especially if you have a family or friend who is a sufferer.



Beauty is on the inside and other cliches part two

In my post Beauty is on the inside and other cliches I talked about the difference between being obsessed with perfection and enjoying enhancing your appearance with make-up and hair products. Recently I began reading The Female Eunuch by Germaine Greer for research. While I don’t agree with everything Greer says and some parts are now not relevant (the book was published in 1970), I really liked the chapter about beauty. It’s normal to have reservations about your appearance, but as Greer argues, we should be mainly not only be okay with our natural appearance/body, but should love it. You don’t have to be arrogant, but find a way to convince yourself that we are each different, and come to appreciate yourself and the natural appearance of others.

If we could stop striving to become the ‘perfect’ woman (or man), then there would be less ‘frankensteins’ as I like to call them (and yes I know Frankenstein was the creator, not the monster). Frankensteins are created when a person sees a part of someone elses body that they like and try to change their own to be the same, most of the time this either ends up greatly exaggerated, or just doesn’t fit with their natural appearance, and the result is ugliness. For example, I have pasty white freckled skin and auburn hair, if I started hitting the sunbeds or used spray tan I would look ridiculous. There are tons of orange women parading our streets, it ain’t a good look ladies, you’d be far better off accepting your pasty skin and just using blusher.

I don’t say these things lightly, I have experience. I was a size 8 before I got sick and now…I’m a few dress sizes bigger. It’s frustrating and yes most people will look at me and think “don’t order the cake” but it’s not the end of the world, worse things happen. As long as I’m eating healthily then I won’t waste my time worrying about the odd treat or the size of my waistline, I’ve come to accept my bigger self, and hopefully soon come to love it.

My freckly knees

When I was teenager I hated my freckly knees and did all I could to cover them up, until freckles came in to fashion one summer, and my friend said they were a cute oddity. Not everyone loves them but I do, my friend helped me see my spotted knees in a different way, and now I like that I’m the only person I know who has freckles on every joint, as if they all congregated at the bends.

Perhaps there’s a part of yourself that you could see in a new light?

“For women, there is one aspect which is common to both situations: demands are made upon them to contour their bodies in order to please the eyes of the others. Women are so insecure that they constantly take measures to capitulate to this demand, whether it is rational or not” – The Female Eunuch