Sunday, 27 February 2011

Sick in the head? Part 1

This is the first of a planned three-post series about Munchausen syndrome. In this post I'll talk about the classic syndrome. In the second post I'll talk about Munchausen syndrome by proxy, and in the final post about a newly described variant, Munchausen syndrome by internet.

I used to know someone in meatspace who constantly told lies. About the tiniest, most unimportant things. One minute she was a dental nurse, the next she was working for MI5 (neither was true). It was like her real life wasn't interesting enough, so she had to make up another one to get more attention. We constantly called her out on it (apart from anything else, she wasn't consistent in her lies) but it didn't seem to bother her. Getting attention was the important thing, even if it was negative.



Many people need attention, but for those of us who have serious physical illnesses, and have to take multiple medications and undergo medical procedures to remain moderately stable (note: I didn't say well!), it seems truly bizarre that anyone would deliberately exaggerate or create illness symptoms to get it. People who do this may be suffering from Munchausen's syndrome. These symptoms can in some cases be as credible and measurable as heart arrhythmias, and people with Munchausen's may undergo multiple hospital admissions, treatments and operations. Typically someone with Munchausen's may:
  • invent psychological symptoms such as hearing voices or seeing things that are not really there
  • pretend to have physical symptoms such as chest pains or stomach ache
  • deliberately aggravate an existing illness
  • heat a thermometer to suggest fever, contaminate a samples of urine etc
  • actively make themselves physically ill: for instance by rubbing dirt into a minor wound to cause infection

People with Munchausen's are aware that they are exaggerating or inventing their symptoms. This makes it distinct from hypochondriasis. Hypochondriacs genuinely believe that they are ill. Although it has always been the case that people with Munchausen's have tended to be very well-informed about the symptoms of the conditions they are mimicking, there is now evidence that the use of the internet has increased this knowledge still further.

The name derives from Baron Karl Friedrich Hieronymus Freiherr von M√ľnchhausen, an 18th Century German nobleman who reputedly told many tall tales about himself. His feats apparently included riding cannonballs, travelling to the moon, and escaping from a swamp by pulling himself out by his own hair.


Although the person with it is aware of what they are doing, Munchausen's is a genuine illness - or perhaps, to be more accurate, a symptom: generally of a mood disorder, an anxiety disorder or a borderline personality disorder. There seem to be two groups generally affected, though nobody knows why: women aged 20-40, often with a background in healthcare; and men aged 30-50. It's not known how common Munchausen's is, though a fairly large study in a Canadian hospital estimated that out of 1300 patients 10 were faking their symptoms, a rate of 0.8% or nearly one in every 100. It's thought to be more common in men than in women.

Munchausen's syndrome is not included as a separate condition in the WHO's International Statistical Classification of Diseases, 10th revision (ICD-10) or in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR). The official diagnosis in these classifications is 'factitious disorder' and Munchausen's is seen as an extreme version of this. The DSM-IV-TR criteria for factitious disorder are:
  • The patient intentionally produces or feigns physical or psychological signs or symptoms.
  • Motivation for the behaviour is to assume the sick role.
  • External incentives for the behaviour are absent.
The sick role is a term used in medical sociology. It is a concept created by Talcott Parsons, and concerns the social aspects of falling ill, and the privileges and responsibilities that accompany it. To simplify his theory, an individual who falls sick is not only functionally sick, but must now adhere to the socially patterned role of "being sick". This role contains within itself certain customary rights and obligations:

Rights
  • The sick person is exempt from normal social roles
  • The sick person is not responsible for their condition
Obligations
  • The sick person should try to get well
  • The sick person should seek technically competent help and cooperate with the medical professional

So, by mimicking or exaggerating symptoms, someone with Munchausen's syndrome both gains attention and becomes exempt from their normal social roles such as going to work. For someone in the grips of a mood disorder such as severe depression, this could be very tempting bait.

There is little evidence as to what causes Munchausen's. One theory is that people with the condition have an anti-social personality disorder which leads them to take pleasure from manipulating doctors and other healthcare professionals. Another theory is that Munchausen's is an attempt to form relationships and become more socially acceptable, by people who previously have been "loners" with few friends and little family contact. Many people with Munchausen's claim to have experienced physical or sexual abuse as children, though these claims are impossible to verify. Many also seem to have experienced serious illness as children.

In the next post in this series, I will be looking at Munchausen's by proxy - where the individual harms others rather than themself.

Thursday, 24 February 2011

Locked in to happiness?

Imagine you were completely paralysed.

Completely.

Only able to communicate by moving your eyes, or maybe blinking.

Could you possibly be happy that way? Or would you want to die?

That's the situation for people with locked-in syndrome, a condition where someone is awake and aware but unable to move or communicate verbally due to paralysis of nearly all voluntary muscles in the body (the exceptions are the eye muscles). In total locked-in syndrome, the eyes are paralysed as well.

Possible causes of locked-in syndrome include:
Public awareness of the condition owes a lot to the book and film The Diving Bell and the Butterfly, the autobiographical story of French magazine editor Jean-Dominique Bauby, who has locked-in syndrome after a massive stroke. He dictated the book letter by letter, using a letter chart and the one eyelid he could control. It's a wonderful book (and film). Read/watch if you haven't already.

 
So, why have I been moved to blog about locked-in syndrome? Well, a recent (and admittedly small) survey suggests, perhaps against our expectations, that the majority of people in LIS are happy. The longer they have been in LIS, the more likely happiness is. Things associated with unhappiness included dissatisfaction with immobility in the community, anxiety, lack of recreational activities, and loss of speech. The authors of the study suggest that recreational and mobility-focused activities should be increased, and anti-anxiety medications used when necessary.

The response rate to the survey was quite good (56%), but nearly a quarter of the responses had to be excluded from the analysis because some of the quality of life data was missing. These respondents may have been different from the others in some important way that has not been considered.

When I was researching disabled people's attitudes to end of life issues, one message that came over very strongly was that although patterns could be discerned, every individual was different. Able-bodied people are sometimes heard to say things like "If I had to use a wheelchair, I'd kill myself". Those of us who've become disabled and now use wheelchairs have learnt that really, it's not that bad at all - but we set our new limit a bit further along. Perhaps with permanent catherisation, perhaps with needing hoisting. People adjust, and this is shown in the study's finding that the longer someone has been in LIS, the more likely they are to be happy.


Respondents in the study were dependent on a caregiver to complete the survey: therefore only those with a good level of trust and communication would have been able to participate. Responses may also have been affected by "self-presentation", where an individual gives the responses they think they're "meant" to give to maintain their relationships.

Even more so, the happiness of someone with that level of physical dependency is going to be hugely dependent on the quality of care they receive. This is illustrated dramatically in the film of The Diving Bell and the Butterfly when the nurses keep leaving Baudry's TV on a channel he hates, without asking him his preference.

So, what conclusions can be drawn? A majority of people in LIS are happy, but it's far from an overwhelming majority. Even among those professing themselves happy, many did not wish to be resuscitated if they had a cardiac arrest. Not conclusive evidence of happiness.

I think a huge amount of "happiness" for anyone, disabled or not, and whatever the degree of that disability, is going to come down to the amount of control the individual has over their surroundings. Even if it's as apparently little as being asked what channel the TV should go on, that's control. Choosing to go out into the community (obviously with support as needed), that's control too.

So it all comes down to the quality of the person who's watching that blinking eyelid....

Friday, 18 February 2011

Bloody spoons

A while back, I had some blood tests done by the GP. Nothing urgent, just routine - related to one of my encyclopaedia of medical conditions. A week or so later I got a phone call from the receptionist at the surgery saying the doctor wanted some of them repeated.

"Why?"

"Oh I wouldn't know. Just come in and pick up the form, any time."

Now, it's not quite as simple as "just picking up the form". Unfortunately. Once I've summoned up the spoons to get the form, I have to either traipse over to the local hospital and hang around for an hour or so, or make an appointment at a different surgery and hope I'm well enough to get there on the appointed day.

So, I never managed it. After a couple of phone calls from the receptionist, she agreed that you know, actually, the practice nurse could do blood tests after all...so I got the blood tests done at the same time as picking up the form (only one lot of spoons expenditure, you see).

Next day, phone call..

"The doctor would like to see you to discuss your blood test results...no I don't know what it's about...no it's nothing urgent, any time in the next week..."

That was a fortnight ago. Anyone got any spoons I can borrow?

Thursday, 17 February 2011

MS and CCSVI: the state of play

There is currently a lot of research going on, either directly into connections between CCSVI and MS or some of the issues around it. What I'm covering here is only a few of the studies I've noticed over the last month or so.

First, a very quick introduction, for those new to the subject.Over the last couple of years CCSVI (chronic cerebrospinal venous insufficiency) has become a "hot topic" in the MS community. The theory goes that rather than being an auto-immune condition, as is the received wisdom, MS is in fact caused by malformations of veins in the neck and trunk. These malformations lead to blood backing up in the brain, and consequent deposits of iron, which cause the immune system to attack the myelin coating the nerves.


If it is decided that there is a blockage, the area is widened using venoplasty or (on some occasions) stents. This has been termed the "Liberation Treatment". It's not without its risks: there have been complications, including deaths, particularly when stents have been used.

Large studies are currently in progress to establish whether there is a link between CCSVI and MS, and whether the "Liberation Treatment" is effective. Many people are not prepared to wait for the results of these studies, and are seeking treatment abroad, sometimes under rather dubious circumstances, as the clinic that diagnoses them as having blockages will also be charging them a large sum of money for the procedure.

So, some recent studies. I'll try to put them in some sort of logical order - not chronologically as they came out, but from diagnosis through symptoms and so on.

A clinically isolated syndrome (CIS) is an individual's first neurological episode, caused by inflammation or demyelination of brain tissue. It may be indicative of MS. In this study, a group of researchers in Italy scanned the veins of 50 patients with CIS, as well as groups of healthy controls and people with another neurological condition. There was  no evidence of CCSVI in the patients with CIS. This result does not support the idea that there is any cause and effect relationship between CCSVI and MS.

A group of German researchers have found no supportive evidence for the presence of CCSVI in people with MS. They scanned the veins of people with MS and healthy controls, without knowing which was which, and found them equally likely to have blocked veins.


If CCSVI causes blockages in the veins draining the brain, you would expect there to be a back-up of blood in the brain, and therefore MS patients to have higher intercranial pressure than people without MS. German researchers have checked this, and found that MS patients have normal intercranial pressure. Again, this does not support the CCSVI hypothesis.

Most mammals (including us humans!) have a part of our genes called the major histocompatability complex (MHC for short). The molecules made by these genes play a large part in our immune systems and in auto-immunity. The MHC in humans is called HLA (human leukocyte antigen), and it comes in various "types", which are identified by letters and numbers. We already know that people with MS are more likely to have the type HLA DRB*1501. Now researchers in Buffalo, NY and Alabama have found that there is no association between HLA DRB*1501 and CCSVI. They suggest that the role of the underlying associations of CCSVI in MS should be treated with caution.

Paolo Zamboni is the Italian doctor who first came up with the CCSVI theory. A new study from his research group has found that people who have undergone the procedure have significant improvements in reported fatigue. The researchers suggest that chronic fatigue may be the symptom most associated with CCSVI.

A positive result is of course a positive result, and I'm glad these people got relief from their fatigue: but it is of note that the studies which measured something objective found no evidence of a link between CCSVI and MS, while it was the study reporting a subjective, self-reported measure that did find a link.

Scans and treatments for CCSVI are carried out by Interventional Radiologists. The Cardiovascular and Interventional Radiological Society of Europe has issued a commentary on the treatment of CCSVI. It states that since no trial data are available, and the basis for the "Liberation Treatment" is anecdotal evidence and internet testimonies, this is not a sound basis on which to offer a new treatment.




Finally, an interesting commentary from Scientific American on how social media can shape medical practice. In this connected, internet-enabled age, doctors are playing catch-up. Even before Zamboni published the results of his first study, they had been posted on an internet forum along with useful links and a Facebook page. With MS, as with some other conditions, the problem is in knowing whether any improvement is really down to the treatment or to the natural ups and downs of the disease. It is vital for neurologists and other doctors to be aware of what patients are seeing and reading online.

Friday, 11 February 2011

Cutlery carer and co

Now, before you read any further, I should make it clear that the majority of the women who come from A Care Agency Ltd (name changed to protect the guilty) are nice, friendly, helpful, people. By far the majority, actually. The fact remains, though, that in the time I've been receiving care I've encountered some...well, let's just call them characters. Let me introduce some of them.

Cutlery carer
Many of my friends are used to hearing my stories about "cutlery carer". Her speciality (and that of her apprentices) is putting things back in totally the wrong places. It could be the forks in the spoon section of the drawer (hence the name...), the plates in a pile on top of the cooker, the tumblers (entirely randomly) in with the cat food instead of on the window sill directly where she'd been looking while washing up...I spend a lot of my life on a kind of treasure hunt.


Too fussy and can't be bothered
I suppose these two are kind of the opposite of each other, so I'll consider them together. "Too fussy" hovers over you, checking you're OK and that everything's being done to your satisfaction till you're just about ready to wallop them! This type can be fine once they calm down a bit. "Can't be bothered" has two sub-types. There's flat-out lazy, about which there's really nothing else to be said. And then there are the ones who actually and genuinely seem to have a mental block about seeing the things that need doing. For three days running they'll step over the basket of washing that needs folding, or not notice the stain on the carpet. Not sure what the answer is with these ones. Are they like this in their own homes?


Speedy Gonzalez



Speedy certainly moves fast and gets a lot done! The only problem is, she gets easily distracted in the middle of one job and goes off to do something else. As a result, I keep finding things like pints of milk sitting out on the worktop hours after she's gone. In the summer.

The hockey captain
...or certainly some kind of school prefect. Does a lot of "jollying along". Isn't interested in the fact that I'm not up to a shower today. My care plan says I'm due one, so she's damn well going to give me one! Also has a tendency to call me "dear", which leads me to suspect she's forgotten my name.


...and some nasties
Unfortunately, not everyone who does care is a nice, good person, and I've encountered a (very) few of the other sort too - either giving care to me or as a colleague back when I was a carer myself.

I've had some bad experiences with carers who seemed to think they had medical degrees, from the way they pronounced on the course, degree and prognosis of my MS. One told me (repeatedly) that I was lucky to have "such mild MS". Now while there are many, many people worse off than me, I don't think I'm particularly mildly affected either. I eventually sat her down and took her through all my symptoms, one by one. The only MS symptom she had been aware of was mobility problems.

I have also been unfortunate enough to have to deal with a racist, bigoted carer, who chose to spout her views to me. I made an official complaint to the agency about her, and asked never to have her do care for me again.

And really...some people are just plain not nice, not approachable, not sympathetic. I'm not talking about individual personality conflicts, which are inevitable. There are some people who just should not go in for care work.

So, those are the carers I've encountered. How about you?

Wednesday, 9 February 2011

MS Classifications - good or bad?

In an earlier post I talked a little about what MS actually is, and about one of the theories for what might cause it (lack of vitamin D in the womb). This time I'm going to blog about the different "types" of MS, and some of the advantages and disadvantages of classification.

Really, everyone with MS has a different course to their condition. They're often divided into four main "types", though, based on a survey of neurologists in 1996. To a large degree, the classification depends on whether the person has relapses. An MS relapse can be thought of as an episode of neurological symptoms, occurring at least 30 days after any previous episode began, lasting at least 24 hours, and not caused by anything else (eg an infection).

Relapses are caused by inflammation in the central nervous system (brain and spinal cord), caused by the body's immune system mistakenly reacting to the myelin surrounding nerve fibres. When messages are blocked in an area with a specific function (eg movement, speech, vision), symptoms may occur.



In the graphs that follow (from the wonderful http://www.mult-sclerosis.org), a rising line shows an increase in disability over time.

Relapsing-remitting

In relapsing-remitting MS (or RRMS), people have attacks (also called relapses, flares or exacerbations). During these new symptoms can appear, or old ones reappear or worsen. In between the attacks are periods of remission, during which the person recovers wholly or partially. Relapses can last days, weeks or months. The vast majority of people with MS have RRMS to begin with.

Secondary progressive

The majority of people with RRMS will eventually develop secondary progressive MS (or SPMS). In the early stages, this is characterised by a gradual worsening of the condition between relapses, which gradually merges into a general progression. As with all people with MS, they will experience good and bad days and weeks, but these are not formal relapses and remissions.

Progressive relapsing
In this type of MS, the individual has progression from the outset, punctuated by relapses. There is significant recovery following a relapse, as in RRMS, but also steady progression.

Primary progressive


In PPMS there is a gradual progression from the outset with no remissions. The word "primary" is used to show that the progression is right from the beginning of the condition, whereas in SPMS it comes after RRMS. PPMS tends to start in the late 30s or 40s (as opposed to the 20s or 30s for RRMS) and is as common in men as in women, whereas other forms of MS are about twice as common in women as in men. Initial disease activity is in the spinal cord, not the brain. It may later move into the brain, but is less likely to damage brain areas: for instance, people with PPMS are less likely than other people with MS to develop cognitive problems.

Other terms are still in use to describe forms of MS. Some you may hear include:

  • Benign MS: Used to describe people who have had MS for 15 or more years without picking up any serious and enduring disability. People with benign MS are often reclassified as having SPMS.
  • Malignant MS: also known as Marburg's Variant and Acute MS. A label given to forms of MS where the condition proceeds to severe disability in a very short period of time. Fortunately very rare.
  • Chronic Progressive MS: PPMS and SPMS used to be lumped together as one as CPMS.
  • ...and there are others.
So has it been beneficial for the multitude of "types" to be reduced down to just four? I think it certainly reduces confusion. At one point so many terms were in use, it was hard to know if you were talking about the same thing. Also, I'm sure it clarifies things for neuros and other healthcare professionals  (I'm not being sarcastic, I promise!)

When research is being carried out, having participants with only one form of MS helps keep the results "pure". And the results of that research can be targeted: if (for instance, as above) it shows that people with PPMS are less likely to have cognitive problems than people with other forms of MS, perhaps neuropsychiatry services could be targeted accordingly.

What with MS being such a variable condition though, and us all being individuals, it's inevitable that a lot of us won't fit perfectly into the categories. I don't, for one. My disease course is pretty much relapsing progressive - except that you're not meant to have an RRMS phase before that, and I did. Do we all want to be treated as "identikit" patients, considered to be the same regardless of our differences?


The same research in which it can seem so useful to separate people into disease types can end up by excluding some patients from potentially useful treatments. The new oral medication Gilenya is already approved in the USA, and it looks likely that it will soon be licensed in Europe. It reduces the number and severity of relapses. I have relapses as part of my relapsing progressive MS, but because Gilenya has only been tested in RRMS (by far the biggest patient group with relapses), it will only be approved for people with RRMS.

Being moved from one "box" to another can be a very traumatic experience. Many neurologists don't seem to realise how much. Being diagnosed with MS is a huge trauma in the first place, and it can take many years to adjust to your new "self". Being told, sometimes quite abruptly, that you now have a progressive form of the condition (read: it's all downhill from here kiddo) is something that needs another major adjustment. This is something I believe healthcare professionals really need to consider.

So, types of MS. Good or bad? Overall, the jury's out, I'd say. For you as an individual? Just remember, you're you, and your MS is as individual as you are! (dammit ;-)

Monday, 7 February 2011

MS research roundup

I was thinking it might be interesting if I did a regular roundup - say monthly - of MS-related research. There's a lot of really good stuff going on just now. I only have a few items here, as these are just the recent ones I can remember. From now on I'll do a draft post as I go along. If it looks like it's going to be too long, I can cut out a few!

I've deliberately excluded everything to do with CCSVI, as I'm going to do a separate post about that.

Researchers at the University of Oxford have established that vitamin D directly influences over 200 of our genes.There is a growing body of evidence that vitamin D deficiency can make an individual more susceptible to MS, as well as other auto-immune conditions such as rheumatoid arthitis, type 1 diabetes, Crohn's disease and even certain cancers. The main source of vitamin D in the body is from exposing the sun to sunlight, although we can also gain some from oily fish.

 It was already known that people with one auto-immune disease were more likely to get another. Researchers from Canada and the USA looked at whether smoking could influence this, and found that smokers with MS were more likely than non-smokers to report another auto-immune conditions. Smoking is a risk factor for both MS and other auto-immune conditions.

Along the length of axons (the long part of the nerve cell, stretching into the body), the myelin is separated into short stretches by nodes of Ranvier. In a normal cell, electrical signals can leap from one node of Ranvier to the next, protected by the insulating myelin.

In MS, the myelin sheath gets broken down and the electrical signal can no longer be conducted properly. Now researchers at the University of North Carolina are suggesting that when myelin begins to break down, the myelin segments begin to slide together and overlap, interfering with the operation of the nodes of Ranvier. For people in the early stages of MS, they say, regrowing the nodes (once we know how to do that!) could prevent the segments from overlapping, possibly halting the disease.

We more often think of histamine as being related to allergies, and anti-histamines as what we take for hay fever. But histamine is involved in other processes in the body. Researchers in Italy used animals with a laboratory-generated form of MS then assessed the effect of histamine on their cells. They found a wide range of results, including an increase in the ability of some immune system cells to stick to inflamed blood vessels in the brain, a crucial step in the development of MS. This connection between the pathways involved in allergy and auto-immune conditions had not previously been established. Histamine looks like a possible target for the development of new drugs.

Finally, a report about a treatment that is already available, but seems to be sadly underused. When people have severe stiffness and/or spasticity that is not relieved by the traditional medications, in some cases an intrathecal baclofen pump will be used. Intrathecal means into the spine. The pump is a small device inserted under the skin of the abdomen, with a reservoir of liquid baclofen. It delivers a constant low dose of baclofen directly into the spinal column, and significantly reduces stiffness and spasticity.


While it must be borne in mind that this report is issued by the manufacturer of the device, the study methods seem robust. It finds that of the 13% of people with MS who may be candidates for the device, only 1% actually have one. The expert panel who carried out the research noted that the main barrier to use of the device is that many physicians do not present it as safe, well tolerated and effective. This may occur due to lack of physician understanding of the quality of life issues related to spasticity, the potential benefits of the device and appropriate patient selection, as well as focusing on disease modifiers rather than symptom control.

I've seen at first hand how effective these devices are. It's appalling if people who really need them are being deprived of them.

Sunday, 6 February 2011

Multiple Sclerosis

I have a condition called multiple sclerosis. I was diagnosed with it when I was 42, but looking back I had had symptoms for a long time before then.

Multiple sclerosis (or MS) is the most common disabling neurological condition affecting young adults. In the UK, around 100,000 people have MS.The cause isn't known: it seems likely that a combination of genes make a person susceptible, and then something in the environment triggers the start of the condition.

One thing that seens to be very significant in whether an individual develops MS or not is where they live - specifically where they are brought up. MS is more common in areas further away from the equator. The map below shows clearly how the risk of MS varies around the globe. The red and orange areas are those with the highest risk, shading to green with the lowest risk.


How can distance from the equator make a difference? One way may be to do with vitamin D. Vitamin D is important in regulating the immune system response, and one source of it is sunlight. A much higher proportion of people with MS (in the northern hemisphere) are born in March, April and May than in other months.: their mothers were therefore pregnant with them in the dark days of winter. Scientists suspect that these people suffered from a vitamin D deficiency while they were still in the womb, and this has led to them being susceptible to developing MS in later life.

Scotland (where I was born and brought up) has the highest incidence of MS in the world. Schoolboy Ryan Mclaughlin has started the Shine on Scotland campaign, trying to get vitamin D supplements recommended to every expectant mother in Scotland, as folic acid is already.

So what's actually going on in MS? It's an auto-immune condition, where the body's own immune system begins to attack part of the nervous system. Surrounding the nerves is a substance called myelin, which acts like electrical insulation and helps messages travel to and fro between the brain and the rest of the body. In MS, the myelin is damaged by the immune system, and the signals slow down, get distorted, pass across to another nerve fibre (like short circuiting), or don't get anywhere at all. In time, there can also be damage to the nerve itself.


The damage leaves scars known as lesions or plaques, which can be seen on MRI scans. These MRIs are often the first stage in making a formal diagnosis of MS.

The nervous system links to all bodily systems, so many different types of symptoms can appear in MS. The exact symptoms depend on which part of the nervous system is affected. Symptoms can include:
  • Difficulties with balance and dizziness
  • Fatigue
  • Visual problems
  • Numbness, tingling, pins and needles, and other "strange sensations"- often painful
  • Bladder problems
  • Cognitive problems
  • Stiffness or spasms in muscles
  • Emotional and mood changes
  • Tremor
  • Bowel problems
  • Sexual problems
  • Speech difficulties
  • Swallowing difficulties
I could go on...and on! But this is quite enough, if not too much, for one post. I'll return to the topic at another date and talk about different types of MS, and some of the treatments available.

Saturday, 5 February 2011

So what's all this "spoonie" business about then?

In my potted biog over on the right, I've referred to myself as a "spoonie". So I thought I should explain what that's all about.

The Spoon Theory comes from an American woman called Christine Miserandino, who has lupus. Like the condition I have, multiple sclerosis, lupus can cause dreadful fatigue. Miserandino came up with the Spoon Theory as a way of explaining to her friends how fatigue impacted on her life. Since then, many other people, with all sorts of long-term conditions, have used it in the same way.



Fatigue is a terribly difficult thing to explain. First, and perhaps most obviously to the outsider, it's very subjective. You can't measure fatigue like you can measure blood pressure or heart rate. It's also invisible. When someone has a broken leg, people know that person's not going to be able to do everything a fully able person might. When you look fine, but are deeply, cripplingly fatigued, it can be very hard to explain that you're not just being awkward. You're not being anti-social. You're not "giving in" to your illness. You'd love to go shopping, to the gig, to the pub. Your body just won't co-operate.

I've often thought that we need a new word, not "fatigue", because everyone already has their own understanding of "fatigue". When I was able-bodied, I talked about being fatigued. After I got hit with MS, I developed a completely new understanding of what fatigue was. If we called it something else - let's say "banana" - we wouldn't have everyone's meanings of the word getting mixed up. "Sorry I'm going to have to cancel on the shopping, my banana is really bad today" - how does that sound?



Anyway, back to the spoons. Christine Miserandino's idea is that when you have a long-term condition, you start off the day with a restricted number of spoons. Each action uses up a spoon, and when you run out of spoons, that's it! You may suddenly lose a spoon or (very rarely) gain one. You can "borrow" some spoons from tomorrow, but that will leave you with fewer for then - and you may have been getting fewer then anyway! Those of us who live by the Spoon Theory code are spoonies.

So if someone suddenly cancels on you because they're "too tired", please bear in mind that not all disabilities and illnesses are visible. They may be a spoonie too!

New blog - or second-hand?

A couple of years ago, I kept a blog. Not religiously, but every few days, I would blog about something of interest to me - often related to my studies at the time, so in some way involving death, dying or disability. Cheery subjects all!

Gradually my postings tailed off. I wasn't that great at the time health-wise, and posting seemed like a chore. Recently though (particularly since I've been using Twitter) I've been reading wonderful, rousing, expressive, moving blog posts. While I'm not saying my writing is up to the standard of the great people on my blog roll (---> over there) I'd like to give it a go!

So what am I going to write about? Well, again, probably anything that's of interest to me. But my "areas of expertise" are disability (particularly from the medical angle, and particularly multiple sclerosis), and death and dying (palliative care, euthanasia etc). There'll also probably be a bit of pre-hospital care in there.

So, until I have something specific to blog about, that's it. Hope to hear from you soon!