M.E. | Depression

m12bbThe #May12BlogBomb is back! Hurrah!

This year I want to talk about two very different illnesses, both of which I’ve had experience with at different times in my life: Myalgic Encephalomyelitis, and depression*.

The whole M.E. vs depression thing is a controversial topic- amongst people who are unfamiliar with both diseases at least. And that’s understandable in a way. From the outside, mild-moderate M.E. (or Fibromyalgia, or Lyme Disease) can look very similar to mild-moderate depression: lack of participation, lack of energy, increased need for rest, even things like physical pain. Even more confusing, you can have depression and then completely separate to that develop M.E. (for example from a viral infection, as I did), or- like with all chronic illnesses- living with M.E. can sometimes cause a reactive depression.

However, they are very different diseases, with very different, almost opposing treatments. That’s why its so important to raise understanding of what those differences are and how to treat each disease. So here are a few basic differentiations for you:

1. With M.E., you have a strong desire to carry out activities, but are physically restricted from doing so.
With depression, you have no physical inability or backlash from activity, but have a reduced desire to carry activities out.

It’s especially important to note that people who have learned to manage their M.E. might appear to not have the desire to do things due to their superior desire to actually recover – sorting the motivation is key.

2. With depression, carrying out vigorous activity (especially exercise) generally results in short-term improvement of the condition.
With M.E., carrying out vigorous activity (especially exercise) generally results in short-term worsening of the condition – with effects often delayed by a day or so.

3. With M.E., regular physical exercise which pushes the person’s current activity ability results in long-term worsening of the condition.
With depression, regular physical exercise which pushes the person’s current activity ability generally results in long-term improvement of the condition.

4. With depression, pushing a person to do activities such as socialising which they feel incapable of, leads them to realise they are capable and can help them improve.
With M.E., pushing a person to do activities such as socialising which they feel incapable of leads them to have severe backlash and can worsen their illness.

5. M.E. is managed with lots of rest, careful pacing of activities, and sometimes the help of physical disability aids and painkillers. This can sometimes lead to recovery.
Depression is managed with psychological treatments/methods such as CBT and intentional carrying out of activities which are fulfilling and/or enjoyable. This can sometimes lead to recovery.

6. Depression is often successfully managed with anti-depressant medication, believed to correct chemical imbalances in the brain. This can sometimes lead to recovery, although often a patient may have to stay on these long-term.
M.E. is never successfully managed with anti-depressant medication. Painkillers** are helpful in managing the disease, but don’t lead to recovery. There are however promising drug trials with things such as chemotherapy treatments, which show long-term improvement whilst remaining on the drug.

7. The exact mechanism of M.E. is unknown, but is often triggered by viral infection or environmental toxins. The central nervous system, endocrine system, digestive system, circulatory system and more can all be adversely affected by the disease.
Depression is caused by a complicated mix of environmental and physical factors, often (but not always) triggered by adverse life events such as abuse, personal tragedy or long-term stress. Depression can cause changes in the body too, effecting the thoughts and emotions of the sufferer.

8. Depression is extremely emotionally painful, although activity can provide some respite and improvement for this. The exact mechanism is unknown, but as the brain struggles to deal with the levels of emotional torment it can cause physical pain too, such as a sore back or stomach.
M.E. is extremely physically painful – muscle pain is the most cited and often most severe symptom of sufferers. This constant physical pain, made worse by activity, can cause emotional pain to the sufferer as they struggle to deal with the intensity and unrelenting nature of it.

As you can see, treating one disease mistakenly as the other can have terrible consequences for the sufferer. That’s why it’s so important to spread understanding of the differences. There are however also important similarities between the two illnesses, which are equally vital to understand. For example:

1. Both depression and M.E. are long-term serious life-altering illnesses.

2. Both people with M.E. and people with depression are often socially isolated, due to the illness making it difficult for them to carry out social activities. Different reasons, same result.

3. Both depression and M.E. are often misunderstood illnesses. People assume you can think your way positively out of them, or just “pull your socks up” and get better- but in actual fact, they both require careful management and hard life changes to see any improvement.

4. Both M.E. and depression can be fatal.

5. Both depression and M.E. often require increased medical and social support for the sufferer.

6. Both M.E. and depression can cause changes in the physical structure of the brain. Different changes, to be sure, but changes none the less.

7. A healthy balanced diet can be beneficial to sufferers of both depression and M.E. in managing their illnesses.

8. Both M.E. and depression can occur at different severities and fluctuate over the course of the disease – and the experiences of each, like with all illnesses, are unique to the person suffering them.

If you’re suffering from either disease – or both – life is hard. It’s my hope this ME awareness day to clear up some of the common misunderstandings between the two, which often lead to more suffering by those already dealing with a hard illness. It’s also my hope to encourage people to love those around them struggling with these diseases, to reach out to them, and not to leave them alone in a very dark place.


* Obviously both diseases are far more complicated than this simplistic overview of some of the major differences between them, and if you want to find out more then I’d recommend researching them thoroughly. Perhaps start with the charities ‘Invest in ME’ and ‘Mind’.

** It’s worth noting for the astute that while some neuropathic painkillers are used as anti-depressants at a higher dosage, but when prescribed for neurological pain (such as found in M.E.) the dosage used is too low to use as an anti-depressant.

Think before you vote, Scotland!

This post is not about voting for No or Yes, but encouraging you to think carefully about the consequences of each option before you decide regardless of what way you lean. It’s not only in response to the many vague and heartfelt reasons such as “we have so much shared history”, “it’s upsetting to break up a union”, and of course the famed “we’re just better together”; but equally directed at the “freedom for freedom’s sake” rhetoric which I honestly have never heard but suppose from all the vitriolic comments directed against it must be out there somewhere.

I understand that there is a lot of emotion, history and joy embedded in both sides of the debate, but there seems to be an assumption that this vote is about “change” or “no change”.

As both sides will readily attest, that’s simply false.

It’s untrue that there will be no change. It is a choice between two options which are both very different to what we have now, not just a matter of opting for the flag or politician we prefer. This is why I consistently encourage people to investigate what both sides say, both from their own sources and from the many neutral sources available for each topic. For example, you want to know about pension security? Great! The DWP have explained exactly what would happen. Go look it up1.

I think it’s important to know what you’re voting for as much as possible precisely because it means big changes. If it didn’t mean anything at all I would agree it doesn’t matter, but it really will make a difference whichever option is chosen.

If you vote ‘No’ you vote for all the change ‘No’ brings, based on the change that the UK government has been bringing into place and all major parties have sworn to continue. If you vote ‘Yes’ you vote for all the change ‘Yes’ brings, based on whatever government is voted into power in an independent Scotland. Neither option retains the status quo.

Some examples:
After a Yes vote, Scotland’s vote actually counts for choosing a government.
At the moment the UK government only has options which lean to the right with any power, but Scotland’s political landscape has a lot more variety2, especially with socially minded or left-wing parties. Plus, Westminster uses First Past the Post which as one can see results in swapping between Blue or Red; Scotland uses Mixed Member Proportional Representation3 which means our parliament reflects the diversity of views. That makes a big difference in how the country will be run.

Like what the UK government is doing? Vote No.
Dislike it? Vote Yes.

After a No vote, the amount of funding allocated to Scotland for services will change greatly.
That’s not unionist backlash or separatist myths; the way funding is allocated guarantees it. Currently for services such as the NHS (which is entirely separate from the three English, Welsh and Northern Irish health provision services, which are also separate from one another4) Scotland is allocated a percentage based on what England is allocatedr5. But, England has been privatising their NHS6 with one of the outcomes being to not have to pay as much. If England doesn’t allocate as much funding to the NHS, Scotland doesn’t get as much funding. If they allocate none, Scotland loses about 1/3 of all income. That means under a No vote we will end up with a private health service instead of public health care (unless the Green party or NHS party win a majority in the UK). 

Like public healthcare and universal rights to treatment? Vote Yes.
Like the move towards fully privatised healthcare and treatment based on income? Vote No.


After a Yes vote, that new government is going to have some new parties.
Actually, all the major parties involved in the Yes campaign are putting forward their vision for what an independent Scotland could have, and since they are in agreement on the basics (more spending on public services, less spending on nuclear weapons) if they get in then there will be a massive swing towards social ideals. For example, the SNP wants to increase childcare funding and minimum wage7, the Scottish Greens want to introduce a universal basic income8 instead of our current benefits system etc.

Like guaranteed health and social care for all? Vote Yes.
Like the current and increasing reduction in public services? Vote No.

After a No vote, the three major UK parties have said that, to varying extents dependent on which party gets in, powers for the collection of income tax will be devolved to Scotland9.
That means that, if you believe anything those parties say any more at least, the Scottish government will have to set up a Scottish version of HMRC and fund it from the Scottish budget. On the one hand, new jobs; on the other, far less money for the government to spend due to funding the Scottish HMRC. As Johann Lamont (Scottish Labour, strong No vote) said: ‘Scotland will not be getting more money, it will simply be accountable for raising more of its money. I hope that dispels some myths.’ That will be a big change.

Dislike public spending but like devolved tax collection? Vote No.
Like public spending and want all powers transferred to Scottish government? Vote Yes.

Those are just a few examples; I’m trying to show that either way, No or Yes, there will be a change from what we currently have, so it’s important to explore what those changes actually mean to inform your vote.

Sadly it’s not a case of whether you like England, it’s a case of considering the various implications of what the vote brings. And as a Christian, I would consider what government policies are in line with God’s character, and what aren’t, and inform my vote in that manner. We know from the sources on both sides that independence is entirely financially feasible, nobody is denying that, it’s whether it’s a good thing or not that’s the case. This is not choosing between two flavours of the same dessert, with the only difference being that a Yes vote means we become dual citizens. If it were I really wouldn’t care enough to write this much

I am not urging you in this post to vote a particular way, I am urging you to consider your vote as the important thing that it really is by voting for the consequences you want in the future. If you look around at the state of our country and you really like the status quo, that’s all well and good (though it highly surprises me), but it won’t stay this way whatever the outcome; which change we want is what we need to consider.

 

References:

1. http://wingsoverscotland.com/wp-content/uploads/2014/05/pensionsletter.jpg

2. See the UK political compass based on 2010 party manifestos at: http://www.politicalcompass.org/ukparties2010

3. For a detailed explanation, see Dr. Euan Bennet’s explanation here: http://scienceofindependence.wordpress.com/2014/08/14/mythbusting-with-evidence-1-after-independence-it-wont-be-any-easier-to-change-governments-we-dont-like/

4. http://www.kingsfund.org.uk/publications/four-uk-health-systems-june-2013

5. http://en.wikipedia.org/wiki/Barnett_formula

6. https://archive.today/xL9YB

7. http://www.snp.org/vision

8. http://www.scottishgreens.org.uk/independence/

9. http://www.ft.com/cms/s/0/a6869f26-1c83-11e4-98d8-00144feabdc0.html#axzz3AV0LPjVo

Confessions of an English Scot

I have a confession to make to my fellow pro-independence campaigners, for which I am very sorry, and that is this: I often say ‘British’ when I mean ‘English’, and ‘English’ when I mean ‘British’.

I don’t doubt that actually many of you have picked that up – my husband occasionally corrects me on the point – but it’s a habit I’m striving to relearn. But it raises the question ‘why?’

Why do I confuse the two terms?

I know what it comes across as (which is why I’ve been trying to stop it) – it comes across as that proud English chit assuming that ‘England’ is an interchangeable term for any land in the British Empire, and that as a true citizen of that noble country I have the right to build myself a castle anywhere I set my flag!

flag castle

Air conditioning, sea view, private moat… *

I can promise you that, in my case at least, that isn’t the reason**.

I think it comes down to something much more basic and forgivable. I think it comes down to identity.

You see, I’m English for sure, but I’m also British. I was brought up English and British, and I have lived my life English and British. I’m from England, I’m from the UK. My passport is British but it says I’m born in England. Just like so many of the ‘No’ campaign say they don’t want to separate because their identity is British, my identity is British.

I understand that British and English are different things – of course they are. To be English makes you British, but my husband is British too (don’t tell him I said that) and is firmly north of the border, heart and soul. They are clearly not the same, but my identity isn’t different things – it’s not split. I’m me, and that me is both ‘English’ and ‘British’.

Part of the privilege of being English (and I don’t deny that we are privileged, nor that that privilege is unjustly given) is that we don’t have to differentiate those identities, and separate out what they represent. In fact, most of what we are given affirms that the identities are inextricably linked and intertwined. Our media paints a picture of Englishness and Britishness being so close as to be the same, and there’s little to contradict it in South English culture. For me, it was only when faced with people equally British but undeniably un-English that I started to question where the line actually is. I never had to before.

All that to say, when I encounter something ‘British’, I may retrieve ‘English’ (or vice versa) as the correct term. I’m not done renewing my mind yet.

This isn’t an excuse. I believe it’s the duty of the privileged to compromise in order to build up the disadvantaged, and that’s why I’m overhauling my lexicon. But I hope it goes some way to explaining why we English often mix up the terms, and might even make you reconsider the words you use and why.

 


*Photo credit: Sarah Groves. Image cropped. Source: https://www.flickr.com/photos/adnamssouthwold/5637302947/

**Well, not usually

A Moment for Meso

I first heard about Mesothelioma when I was a child- my parents were talking about someone who had died of a cancer caused by asbestos, and how unfair it was. They explained to us that a long time ago it had been used as a building material, but that they had discovered that even a little exposure to the dust could be deadly so they had stopped using it. That was all I ever knew about it, so I was shocked when I learned recently that although they have known it was dangerous since the 1950s, it wasn’t actually banned until 1999 and it’s still the leading cause of work-related deaths in the UK

Mesothelioma is a cancer of the cells which cover organs, usually those of the lungs. It develops slowly and is often not discovered until the sufferer is already struggling to breathe. Although it can be up to 40 years from exposure time to the patient developing the disease, once diagnosed the average life expectancy is a mere 1 year. It’s incredibly painful and debilitating, but the early signs tend to be subtle and so often missed – weight loss, side pain, shortness of breath, fatigue and a persistent cough.

One of the great battles faced by Mesothelioma sufferers, much like those of ME, is the lack of information available for patients and doctors. Although most people are aware that asbestos is dangerous, very few realise that it was still used as a building material in the UK as late as the 90s. Then there’s the large number of professions exposed to it – from those serving in the armed forces to those washing construction crews’ clothing – most of whom never knew there was any danger at all.

The good news is that there are treatments available, and new research is being carried out all the time – the prognosis nowdays is better than it was even 10 years ago! However, many doctors are still unaware of the latest options, and patients often struggle with understanding the illness and what to do about it. That’s why, as ever, the spread of information is key – and that’s something we can all help with.

We can combat poor poor life expectancy simply by knowing what to look for. Usually the illness is diagnosed very late, but the earlier its caught, the better the chances of survival. You can find out more about the symptoms at www.mesothelioma.com/mesothelioma/symptoms. It’s also a good idea to check whether you or a loved one worked in one of the industries which used asbestos – a list can be found here:/www.mesothelioma.com/asbestos-exposure/occupations.

If you’ve been diagnosed then there’s a wealth of medical and legal help available at websites like www.mesothelioma.com (US) and www.mesothelioma.uk.com (UK) where you can find out about the latest treatment and research options. There are also support groups and helplines available. In the UK you can sign up for clinical trials through the NHS at www.nhs.uk/Conditions/mesothelioma/Pages/clinical-trial.aspx and help researchers improve treatments and quality of life for sufferers everywhere.

Lastly, if you’re thinking of carrying out some DIY or home renovations then find out first whether your home was constructed with asbestos, so you don’t accidentally put yourself and your family at risk.

Like ME, this was a disease I had vaguely heard of but never really knew about, but it’s something many people know all too intimately, and those sufferers need support too. I’m glad I took the time to learn a little more and to share that knowledge. Information empowers us – the more we know, the better we fight!

We deserve better

This year’s ME awareness week, I’ve been discussing some encouraging reasons that it’s so important that we raise awareness. Today is my last thought for the week.

Reason 3: Because those suffering deserve better

I’ve looked in reason 1 and 2 at how people act on what they believe – and so the consequences of believing a lie mean acting as though that lie is true. The lies of ME include things like saying sufferers have ‘false illness beliefs’ or that they are fakers or lazy – and the consequences of those lies are evident to every sufferer.

They are things like mistreatment by medical professionals, ranging from not being taken seriously through to being locked in institutions and forced to undertake activities which are severely harmful. Outside of medicine, it can mean being shamed for having a disease, ostracised by a community and treated awfully. Families push people out for refusing to get better; spouses leave because they can’t cope and don’t have the support they need to care for someone who is suddenly severely ill; needed research grants are ignored; jobs unfairly fire people; gossip centres around someone who rarely leaves the house; benefits are cut off unjustly from those who are too ill for basic care – and it goes on.

People with ME do not deserve this treatment. Every sufferer deserves better. Every sufferer deserves rigorous scientific research to find a true treatment, a reliable cure. Every sufferer deserves doctors who have heard of their condition, specialists who truly understand it and real help to manage the disease’s course. Every sufferer deserves those around them to understand them and to come alongside them in their difficulties, not turn away.

I believe the route to this is awareness.

When doctors are truly aware of this illness, they will treat their patients in accordance with that awareness. When friends and family, carers and support providers are truly aware of this illness, they will move to support each other appropriately. When sufferers are truly aware of this illness, they will know how to take care of themselves and how to take charge of their own care where possible.

The lives of those affected by to this horrible disease are vastly improved by awareness, and that is what the sufferers, carers, friends and family deserve. They deserve a future where people truly understand this illness, where it is researched and treated seriously, where patients regain their dignity – they deserve a future with a cure.

My encouragement to every sufferer, carer, friend and family member this week is this: keep fighting, because every little increase in awareness that we make together moves us towards that future. I know so well that sometimes it feels like we are doing nothing. But each little action, each single person you inform and enlighten, moves us one step closer to the future of true understanding. Whether you have a popular public platform reaching thousands, an online-only presence telling your story, or a single conversation at the shops, you are helping spread that truth, and that truth slowly but surely makes a difference.

 

Awareness brings change

This week I’m exploring the needs for awareness, as an encouragement to all those I know who are fighting hard to keep raising awareness. I wrote about how different it looks from the outside, and that lead to the first reason it’s so important to raise awareness – because if we don’t tell people, they don’t know. Today is my second reason:

Reason 2: Because awareness brings change

As I discussed yesterday, when people don’t understand an illness, they make wrong assumptions – and the knowledge and assumptions we have are the basis for our actions.

Currently the assumptions that people have about ME, mostly formed from the negative portrayals in the media and their own preference for assuming the best, lead to a negative treatment and response of those suffering. They hear or assume fakery, false illness beliefs and over-emphasising, so they act as though sufferers aren’t really ill, aren’t as bad as they say they are, or that they would improve if they just thought positively.

It’s even worse when these lies and false assumptions affect the medical profession. Since they aren’t taught about the disease, they have no idea how to treat it – worse, with no accurate foundation, they are susceptible to listening to the serious miscarriages of science in the psychosomatic school of ME ‘research’. Someone with even a basic knowledge could not take such things seriously, but because they haven’t even that much, patients are treated like malingerers. Worse, many are imprisoned in psychiatric institutions, forced to exercise against their will and better judgement, ultimately making them irreperably worse.

But think of the opposite – what happens when doctors are adequately informed of how to treat the disease? Patients improve, they can manage their lifestyles. Or think about other illnesses which have previously been little-known: when enough people know about the difficulties, the much-needed research finally gets funded and there are breakthroughs in treatment. Even in the day-to-day, the way a patient is treated by someone with understanding restores dignity to a horrific situation, instead of degrading them further and adding insult to the grave injury of underserved and unremmiting disease.

Informing people is part of how we make that change. When the balance tips and people’s preconceptions are based on truth, that knowledge will bring change.

They won’t know

I wrote on Monday about how different ME, and many other chronic illnesses, look from the inside and outside. How those who don’t know what is going on simply can’t tell. So, I want to expand on this with just three reasons why raising awareness is so important.

Reason 1: Because if we don’t tell people, they won’t know.

I have noticed that we have a tendency to not want to believe the worst situation. We want to think that when someone tells us how bad their illness is, that they are over-emphasising it. Why? I suppose that it’s because if they are telling us truth then that situation is too awful to comprehend. I assume that it’s because if we knew how bad something really was, we would also know we would have no choice but to help. But perhaps that’s me not wanting to believe the worst.

It also seems that people want to believe that if someone suffers greatly they suffer because they have brought it on themselves. We may not explicitly believer in ‘karma’, but there is some comfort in the vague idea that if we are bad we get what is bad, and if we are good we get good. When we see something awful happen to someone good, we often rationalise tha they somehow deserved it, or their bad choices lead to it… because if it could happen to them, it could happen to anyone. If it could happen to anyone then it could happen to us.

As I have already mentioned, ME really does look invisible from the outside. When you’re too ill to go out, those outside can’t see the casue, just the result. So when people look on that, just the result, they maybe like to assume that the cause isn’t as bad as it really is. And as long as we let them keep that assumption, they don’t know any better.

If you add to this the tendency in most chronically ill people to hide how ill they really are, people often really cannot see or understand how much an illness effects someone. Actually, when we hide how it really is, we end up obscuring the truth of our situation and making it harder on ourselves.

We need to speak out and say this is how it effects us – the sufferers, the carers, the family & friends – this is how we suffer and survive. If we don’t tell them, they don’t know – but if we do tell them, if we don’t shut up about it, then they have heard the truth.