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 www.fmauk.org/medications

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.

 

 

What ‘The History Boys’ teaches us about education


Yesterday afternoon I went to see a wonderful performance of Alan’s Bennett’s The History Boys (now been made into a film). The play, while very comical, also asks some probing questions of the British education system. These same questions and issues are just as prevalent in every school up and down the country today, as they were in ‘80s Sheffield, where the play is set. Most of my friends have a gripe or two about their school, their teachers, etc, etc. We all have someone to blame for not getting an ‘A’ in an exam or piece of coursework. Is the current approach of focusing on exams really the best way to teach and grade our society? I’d like to explore some of the ideas Bennett presents his audience through the teachers, without giving away too much of the plot.

The play is centres around a group of schools boys, who have achieved grades good enough for them to apply to Oxbridge to study history. The headmaster, eager for his school to climb up the league tables, seizes the intelligence of these boys and enrols them in classes to prepare them to apply to Oxbridge. Other than the headmaster, the play has three teachers, each representing a different approach to teaching and education.

Firstly, Mrs Lintott, who taught the boys ‘A’level history. She represents the teaching style which has dominated schools since the introduction of national curriculum. The boys acquired the knowledge of history needed to achieve an ‘A’ grade in their examinations but did not actually engage with the material. This approach doesn’t encourage pupils to think outside of the box. They simply memorize and regurgitate the correct information. I have to admit, I remember little of what I was taught in school, even from my ‘A’ level classes, although I achieved high grades and only left school two years ago. That may have more to do with my bad memory though, the students on University Challenge seem to soak up every little bit of information around them.

Does this process of memorizing and then repeating the material actually improve intelligence? The structure of the examinations means that students can remember the material for a short time, but as soon as they leave the exam room, the knowledge just disappears- we learn just for exams and do not obtain long-term knowledge. This disadvantages pupils who find learning and working in this way difficult, because their minds do not work this way, but it does not mean they have lower intelligence. A prime example are dyslexic students, who are actually usually highly intelligent but find it difficult to express themselves in the way exams demand, and therefore achieve lower grades. Great people such as Van Gogh and Mozart would have been branded as having learning difficulties if they went through schooling today. This begs the question, does the schooling system get the best of pupils? Are intelligent pupils slipping through the cracks because they don’t fit the system, and, therefore, are branded as low-achieving pupils, leaving school with low self-esteem?

Hector very much recognises these flaws in education. He teaches the boys general knowledge, and is infuriated by the boys consistently asking, “will that be on the exam?” For him, knowledge is not repeating facts, events, etc, but “all knowledge is precious whether or not it serves the slightest human use” (Housman). He teaches the boys French, poetry and hymns among others, but all of this seems pointless when you consider whether this knowledge will ever be of any use. The headmaster scheduled these lessons so that the boys will appear as cultured candidates.

Do you agree with Hector?

Irwin, however, wants the boys to harness this knowledge to present a new view of history. Irwin is hired as a temp to ensure that the boys’interviews and exams will be good enough. Unlike Irwin, none of the teachers went to Oxbridge so they don’t know how they can help the boys get in. Irwin pushes the boys to think outside of the box, and steer them away from the status quo answer. This is very much the approach to education in university. Read, read, and read some more so that you can give an informed and strong argument. The boys strive to reach Irwin’s high standards, but are frustrated when they realize they have to argue for arguing sake, and not because they agree or believe what they are saying. Irwin’s response to this is to tell the boys that they must detach themselves from history. Should students and lecturers be passionate about their subject, or does this emotion only cloud judgement and prevent proper study and argument?

Ultimately, the best system should involve all three- in Europe pupils obtain a baccalaureate, instead of ‘A’levels. Life and key skills are assessed alongside academic subjects. In 2003 the Welsh Assembly introduced a Welsh Bacc. It is not yet compulsory but my school was one of the first to trial it, and, while my former class mates would hate me for saying this, I do think it did help me develop skills, and definitely made me more aware of my strengths and weaknesses. I love learning, and so academia and exams will always have a place for me, least not because it is essential for development, but in economically developed countries, like the UK, where old industry and manufacturing are almost non-existent, the education system must teach skills which are needed in the workforce and assess intelligence in more varied forms than written examinations, rather than waste talent because those pupils don’t fit the mould.

What do you think? Do you prefer one of the teacher’s approach over another, or disagree with all of them? What was your experience of education? And, if you’re one of my international readers, bow does the British education system compare to that of your country?

“I’m not a token woman”


Nick Clegg, speaking at the Lib Dem conference this week, told the party that there needed to be more ethnic minority, disabled and female members. He said, “We have some exceptional women in Parliament…but we don’t have enough.” Previously, the party has been against positive discrimination but Clegg now proposes a list of Lib Dem  ministers with 50% of places for female, 20% of places for ethnic minorities and 10% of places for the disabled. This came after the Hansard Society condemned the lack of women in the Coalition, revealing that only 32 out of 184 cabinet committee seats. When this issue was discussed at the Lib Dem 2002 conference, female MPs wore t-shirts with the slogan, “I am not a token woman”, to make a strong point. The idea came from Jo Swinson, who still opposes all-women short lists. Who is right? Does Clegg really want to have better representation in his party and do his part to remove glass ceilings, or is this simply a way for his party to gain popularity again?

Until recently, I had a firm opinion on this topic, all-women short lists are not the way to improve equality, but no I ask myself, how much has society really advanced since equal opportunities and anti-discrimination found its way into law? Little, if Parliament is anything to go by. True that females have become MPs, we have even had a female PM and, from the politicians I have spoken to, treatment of female MPs in the House has improved, but that is not to say that there is no more ground to make.True equality is impossible, but isn’t it about time for institutions, like Parliamentary committees, to be forced into giving equal opportunities?

“We have got fewer women around the Cabinet table than we have had in years- we are going backwards in numbers.” – Ruth Fox, the director of the Hansard’s Society’s Parliament and Government Programme

Opponents will say that discrimination of any kind is immoral, no one should get a job because of their sex, the colour of their skin or because of their disability. And perhaps they are right, all-women short lists may not be the way to solve the issue, Swinson has a point, work needs to be done in order to ensure there are actually women to go onto the short-list. It seems to me though, unless an alternative is found, all-women short lists is a step in the right direction. Perhaps it will encourage women into politics and at least that means that if/when women actually get to that stage then they won’t have a stumbling block.One thing is for certain though, non-intervention has not worked and, at least in politics, the glass ceiling remains.

What do you think?

Home-made: CHOCOLATE FAIRTRADE PUDDINGS


A quick and easy Fairtrade pudding is chocolate fondu- melt some Fairtrade chocolate and dip bits of Fairtade food into it.

BAKED CHOCOLATE BANANAS

This recipe is a little more time consuming but will still only take a couple of minutes to prepare, and it’s part of your five-a-day!

All you need is:

One Fairtrade banana per person, preferably a bit more ripe than the ones I have here;

A bag of Fairtrade chocolate buttons, big or small, or can use squares of chocolate;

A tub of your favourite Fairtrade ice-cream (optional).

Method:

1. Preheat the oven to 150C/ 300F/ Gas mark 2

2. Slide each banana open, do not peel the banana.

 

3. Push the chocolate as deep as possible into the banana.

4. Cover eat banana with foil and place on baking tray. Put in the oven for about 15 minutes or until the banana and chocolate seem gooey. Keep checking them though, you don’t want them to burn.

5. Remove the bananas from the oven and carefully scrap all of the inside of the banana into a bowl. Add a few scoops of ice cream and serve immediately.Enjoy!

Let’s go bananas!


If you’ve ever been a waitress then you know you’ve hated your boss for paying you minimum wage to run around all night. You hate anyone who doesn’t tip fairly, even when you were extra nice because you needed some extra cash. It just doesn’t seem fair. Imagine how much cotton pickers and coffee farmers feel when you pick up Nescafe at Tesco instead of one of the many Fairtrade coffees now available, just because you didn’t want to pay the extra couple of pence or even as much as £1. We have all been frustrated to tears many times in our lives because we feel that we have been treated unfairly. Think about the mothers in poor countries, doing back-breaking work all day every day and are still unable to feed their malnourished children.  Or the child now without a mother because their family did not have access to safe water. I’ve noticed that people are quick to jump on the bandwagon moaning about all the people who unfairly claim benefits with the tax payer’s money, so annoyed that someone is gaining on the taxes they pay. This is an injustice they care passionately about. When you bend someone’s ear about shopping more ethically, they quickly wave you off because they can’t afford it. I questioned posting this blog because I have been trailing out this argument many, many times in the last few years and the response is always silence, or a roll of the eyes- here she goes again. I couldn’t not use my blog as a soundboard for Fairtrade Fortnight though.

Fairtrade Fortnight begins tomorrow and runs until the 13th March. I’ll be writing some specially themed posts throughout the fortnight but I’ll start off by listing some of everyday products, found in all supermarkets (including Lidl), and some smaller shops too, which you can switch to Fairtrade today!

Chocolate: Cadbury’s Dairymilk or Bournville, most of Green and Black’s chocolate bars are Fairtrade, and organic too, and the lesser well known, Divine (aptly named).

Tea and coffee– there are tons of different Fairtrade coffees (instant and ground) and tea bags now

Wine– red, white, and rose

Fruit and fruit juice- Bananas, mangoes and more

Rice- I’ve only seen this is Sainsbury’s so far

SugarTate and Lyle

Hot chocolate

Spreads and sauces- Honey, peanut butter, mango chutney, etc

Ice cream- lots and lots but most famously Ben and Jerry’s

Snack barsKitkat, cereal bars, flapjacks, brownies, biscuits, nuts, etc

and there’s lots more too!