Karina Hansen

I'm assuming everyone reading this will already be familiar with the situation but if not here's basically what's going down.

http://xa.yimg.com/kq/groups/86982676/2146474059/name/You+are+killing+me+19-6-13.pdf

Karina has now spent months in a locked psychiatric ward against her and her families will. Again, whilst it's incredibly important to highlight the lack of evidence supporting the idea of M.E being a functional disorder that's not what I'm personally going to focus on. It's quite clear that Per Fink is not interested in hearing evidence to the contrary. What is of paramount importance right now is that Per Fink and the drones at Hammel Neuro centre understand is that there is ZERO peer reviewed evidence supporting Graded Exercise Therapy for severe sufferers. You don't need to have a background or qualifications in science to understand that this makes Fink's intervention rest on very, very shaky ground.

As I alluded to in my previous post, the science is even incredibly questionable for the efficacy of GET in moderate or mild patients. A more detailed analysis can be found within this fantastic article. Just what does he think he's going to achieve here? A recovery? What? It's not going to happen. Sorry.

http://orderedrights.files.wordpress.com/2013/06/nel340313r01_morris-maes2.pdf

There is no debate left, she is being experimented on and I am gravely concerned that this will lead to her losing her life. Sophia Mirza was sectioned in 2005 in the UK and later died. Wanting to help her is not a good enough excuse when there is a precedent for interventions such as this resulting in death of the patient. Not that I think for one second Per Fink wants to help her. From his arrogant sentiments and complete disregard for scientific evidence I don't feel as though there is any exaggeration in stating that personal ambition and ego are the primary catalysts for his actions. It seems to be a rather disconcerting theme that blights the scientific world and one we're all very familiar with suffering from M.E.

I'm at a complete loss as of how to help. I've contacted journalists, emailed Per Fink, contacted celebs, M.E charities who aren't already involved, but what else? Will he even be held accountable should her health deteriorate? Why is it ok to experiment on a patient because you can flash a qualification around?  What happened to science? What happened to the rule of law? What happened to treating patients with fucking respect? I hope Karina is released but if the worst does happen I hope we can all put every ounce of energy we have into making sure those responsible do not get away with this.

Health n dat

Yeah yeah yeah. Health, M.E. My favourite thing in the entire world.

Here's a summary:

Started pacing properly. Started taking Co-Enzyme Q10. Feeling the best I have in five years, all my mate's noticed and everyone was really happy for me. It was great, not back to normal great but holy shit I can get out and socialise great. Then I had to move house with only a few people to help me so I crashed pretty hard. This was four weeks ago, I'm still not feeling great, not really getting out of the house at all and pain is fluctuating pretty badly.

I'm off to Portugal in a week but not stressing about the travelling as I know I can do it and it's a short flight, hot weather and peaceful surroundings always make me feel much better. What I will do when I get back is produce an M.E travel guide specific to this trip. Lucky people you.

I've also just found out I've never been tested for Lymes disease. With all the extensive tests that were carried out I'm pretty unhappy about this. I've ordered a testing kit from IgeneX which are much better than the NHS ones which I hear are next to useless. It will cost me though, around $260 but for peace of mind I'm happy to do it. If it turns out I do have it, then it's something that can be treated.

I'm also going to start taking LDN (Low Dose Naltroxene) due to a large amount of anecdotal reports about it's effectiveness in M.E and indeed Lymes. With the absence of peer reviewed evidence that's all you can do, trust your instincts, analyse anecdotes thoroughly and make that decision.

Life for the last five years has been very tough. Not moaning, just stating a fact. Part of what bugs me so much is the apparently never ending amount of conflicting information surrounding M.E. It's an auto-immune disease. It's a neuro-immune disease. It's an immune system irregularity. It's actually Lymes. It's something to do with AIDS. It's a virus, it isn't a virus. It's a virus but with psychiatric components. M.E isn't CFS. CFS is M.E in Australia and the US. Some patients diagnosed with M.E don't have M.E. Many CFS patients actually have M.E unless of course they're in the U.S or Australia in which they do because CFS is M.E there. Oh yeah, it's also M.E/CFS or CFS/M.E. How are patients supposed to interpret this junk?

The psych's think it's a functional disorder, great, where's the next treatment coming from and when? What is it? More GET/CBT? Brilliant. Next to useless and in some cases dangerous. It's not dangerous you say? Patients are lying? The peer reviewed evidence says it's safe? Oh, right, the peer reviewed evidenced studied a whole host of different patients with different illnesses and the data on who got worse isn't there for us? Other evidence suggests the complete opposite? Who in their right mind would trust this!?

Other psychs think it's a physical cause exacerbated by psychiatric components. Great. Lets go with that, what are the treatme.....Ah yes, same issues as above. Brilliant. But then we have peer reviewed evidence detailing immune system abnormalities and a host of experts detailing how convincing the evidence is that it's a physical illness. Now personally, I think the evidence of this is pretty damn solid, but I'm not here to wax lyrical about what I think causes M.E, just the complete mess and conflicting messages that are sent to patients, who are given little to no support from their GPs and sometimes outright hostility and abuse.

Lets get one thing clear, nobody should ever blame a patient for their illness, whether it's psychological or physical, depression, anxiety, cancer, M.S, M.E, even hypochondria. These all need treating. How far do GPs and the medical profession think they're going to get in treating patients if they blame them? Can anyone tell me? Because I doubt it results in much success.

You are failing patients and you will be held to account, I will make sure of that.

Mensch Press

Louise Mensch likes to lift Louise Mensch likes to spot Louise Mensch likes to be lifted by Louise Mensch lifting whilst spotted by Louise Mensch.

Invest in M.E

Oh yeeaaaah. I've been growing a beard on and off for a while now but kept getting annoyed with it. I've also been thinking that I'm not really doing anything worthwhile with my time so this fundraising adventure was born.

I shall be growing a beard until Jan 1st 2014.

http://www.justgiving.com/Paul-Gadsden

I'm excited about it as much as I'm dreading looking like Happy Gilmore's caddy.

My advice to Labour

Shutup. About. Welfare.

There's no need to say anything. Ideological austerity driven economics are collapsing the economy and
you're falling for the trap set by the Tories, willing to cast hundreds of thousands into poverty to satisfy the ignorance of baying hordes.

If you had to, I guess you could actually try and promote the facts surrounding welfare and not adhere to the agenda set by the government and the tabloid media, but it looks like that's too hard for you SO JUST STOP TALKING. Look, I hate you for being neo-liberal losers, but your economics are at least a little bit more coherent than the "scribbled in the back of an Ayn Rand novel during gcse economics" drivel we're currently using. Actually, I won't even be voting for you, this is just a bit of friendly advice. But please, quit being massive arseholes and return to just being arseholes, focus of the economic failings of Osborne, it's so easy I don't know how you're missing this.

That Cher Is Dead

No, not Cher, the Queen Diva, but Thatcher, the Queen.......Shitehouse.

Awash with sanctimonious and patronising sycophancy over how to act when a public figure dies I figured what a great moment it would be to round up all my thoughts into a single blog post.

I don't like nasty people, I celebrate when they die, is basically how I 'd sum up my approach to today's wonderful news. Harsh? Inhumane? Not in the slightest, it is because I care for people and value humanity that today I celebrate. Sure, she's no longer in power and sure, her ideology lives on in today's government and that is why I am still angry, but today is cathartic, I don't just celebrate the death of a wicked person but also to signify my opposition to the continue legacy of privatisation, victimisation of the poor, removal of public services and rapidly increasing inequality and unemployment. 

Naturally, I need to explain why I think she was so wicked.

She was a homophobe. Section 28. A truly awful policy.

"Children who need to be taught to respect traditional moral values are being taught they have an inalienable right to be gay" - Thatcher

Xenophobia.

Let that comment sink in for a while, it reads like a diatribe from a delusional UKIP or EDL member.

She supported the mass murdering Pinochet. Gave him a home in the UK so he couldn't face his crimes.

http://news.bbc.co.uk/1/hi/uk_politics/466571.stm

Covered up for the child raping Saville.

Did nothing whilst children were abused in Kendall House.




The demonisation of travellers and legislation against the freedom to roam and congregate.

Rejoicing in sinking a ship which was fleeing leading to the deaths of 200 people.

Selling off social housing. You know why we have this bedroom tax problem right?

She called Mandella a terrorist and refused to sanction Apartheid South Africa.

She refused to sanction the Khmer Rouge and there's also...


http://www.guardian.co.uk/world/2000/jan/09/cambodia?CMP=twt_gu


Covered up the Hillsborough disaster.

Opposed the re-unification of Germany.

The closure of the mines was disastrously handled, with police battering political dissenters, leaving whole communities gutted. Nothing in place for those left unemployed, nothing.

She drastically reduced trade union rights, setting the template for reduced wages and inferior working conditions for employees.

Her financial privatisation ultimately led to the corrupt banking practises we see today and helped in part to create the financial crash we're still suffering from, not helped by devotion to the ideology of austerity and market privatisation left in her wake.

Privatisation of nationally owned industry for the financial benefit of the wealthy few, and Tory shareholders. Continued today.

Rising inequality and poverty as a result of the removal of public services, rise in vat (8-15%) and lowering of top taxation rate, which is still falling and leading to further inequality.

The last 30 years have been Thatcherism, continued in part by Blair and now by Cameron. Any criticism you can make of Cameron is ultimately a criticism of Thatcher. I can't understand why I'm supposed to respect this, so the next time you're sitting in an ATOS exam or reading a news article about what a scrounger you are, or how kids shouldn't be taught that being gay is ok, think about where this all came from and maybe you'll reconsider whether you really should be respecting the dead, because she sure as hell didn't respect you.

Climate Change

Ahh the joys of debating! It has led me to realise how nutty some Libertarians really are, especially when it comes to climate change. You can lead a libertarian to water, but you can't make it drink because that would violate it's personal freedom you Stalinist motherfucker.

Anyway, thought I'd collate some super duper climate change resources as a bullshit detector.



http://grist.org/series/skeptics/

http://www.sciencedaily.com/releases/2009/05/090519134843.htm

http://www.realclimate.org/index.php/archives/2007/05/start-here/

http://www.realclimate.org/index.php/archives/2012/12/online-video-lectures-on-climate-change/

http://www.newscientist.com/topic/climate-change

http://www.youtube.com/watch?v=52KLGqDSAjo

Now, doesn't that feel better?

BUT WAIT! Your day is about to get worse. Just look what you could be up against!

"Peer review has been shown as corrupted again and again by eco-fascists on the journal editorials"

"You're the only one believing in a defunct religion here"

But it gets worserer! They even share James Dellingpole articles. This is a major klaxxon and should cause you to retreat immediately. Hide. Cover your face. Run. Do whatever it takes to protect your sanity.

I'd like to imagine they simply haven't heard the evidence but as you can see they probably have and brush it aside as a conspiracy. I can't think what vested interest Libertarians have in ignoring climate change, the devotion to free markets and opposition to government action? Surely not? I mean, it's not like Ayn Rand ignored scientific evidence about the dangers of smoking or anything.

What do the Tories stand for?

Erm...

• Protecting the City of London
• Ignoring tax evasion/avoidance
• Retroactive legislation
• Forcing people to work for £70 a week which many of them have already earned (That's what insurance schemes are)
• Removing guaranteed rights
• Decreasing workers rights
• Making it easier to sack workers
• Reducing redundancy periods
• Cutting taxes for millionaires
• Cutting support for disabled people
• Cutting support for unemployed people
• Selling NHS services despite widespread evidence that PFI schemes are wasteful and inefficient
• Economic policies that have been shown to increase inequality and shift income to highest earners
• Punishing disabled people if they're not on their death bed
• Punishing disabled people even if they're on their death bed.

Of course, this is all to cut the deficit and national debt. Which they haven't done. So people are poorer, services are being sold off, unemployment isn't being solved, patients aren't getting improved healthcare, disabled people are on the verge of suicide and we have no access to legal advice to challenge it, nor will we have human rights legislation to appeal to. For what? Absolutely nothing!

How did they do it? They convinced you we were overrun by scroungers and fakers and this was crippling the economy. An economy caught up in a worldwide financial crisis, caused by an illegal and unscrupulous financial sector. A financial sector given the freedom to do what it likes by the same party 25 years ago, encouraged by the very party they blame for our economic woes but at the time, were pushing for more removal of regulations. They have done nothing to solve it and nothing to prevent it from happening again, they still bleat on about scroungers, fakers and the lazy as if people on tiny incomes can bring down an entire economy. How gullible must you really be?

My manifesto

This going to be brief, unorganised and will no doubt be updated when I remember what I think about certain things. Otherwise, here is my political manifesto.

• Public funding of political parties.
• Donation limit of £10k to parties.
• Full marriage rights to any consensual participants.
• Cancellation of 1986 deregulation of banking industry. Introduce UK glass-steagle equivalent.
• Nationalisation of bailed out banks. Return bailout money to taxpayers.
• Bring to justice anyone involved in illegal banking activity which led to financial crash.
• Removal of Church's tax free status.
• Disestablish the Church.
• Disestablish Monarchy.
• Reduce VAT to 10%
• Increase top rate tax to 75%
• Invest in mass, sustainable social housing.
• Introduce a law to make sure all new houses are to be built with solar panels/wind technology.
• Shift British economy from banking to sustainable energy products.
• Remove the wild camping ban.
• Introduce press regulation and laws on press monopolies.
• Clampdown on tax avoidance/evasion.
• Legalise all drugs. Invest in rehabilitation facilities for addicts.
• Nationalise utilities provision.
• Nationalise railways.
• Reverse the privatisation of NHS services.
• Emphasis on preventative medicine throughout the NHS.
• Legalise prostitution.
• Encourage self sustainability in UK households, both food and energy wise.
• Cancel trident.
• Support small businesses via start up loans.
• Increase the minimum wage in order to increase demand.
•  Limit salaries for union bosses and executives. Political donation ban also applies to unions.
• More science education in schools, especially in regards to climate change.
• Cap private rents.
• Reform libel laws.
• MPs must have no financial interests in order to serve the public.
• Political parties will be fined by an independent regulator for failing to fulfil manifesto promises or introducing legislation not in manifesto.
• Sex education for every student.
• No religious schools.
• Mandatory politics classes for every student.
• Strong emphasis on critical thinking in schools.
• Remove all Lords appointed due to to religious affiliation.
• Remove ATOS contract immediately and return benefits decisions back to GPs.
• End PFI contracts.
• End big business subsidies.
• End farm subsidies.

Ok that's it for now, some of them may need changing and bits/detail added.

Animals

Stuck in the house a lot. Not much to do so I like to keep pets, only I'm a bit weird so my pets are naturally a bit weird too.

Time for dinner mofo.

I miss their singing!

I do not miss their "singing"

My first lizard Thomas Geckoson I MISS YOU MOST OF ALL!

Difficult to look after but stunning.

Little buggers. Would jump onto your face.

My Rainbow Boa Jason all grown up. He's super chilled, too chilled even. He don't even give a shit.

Twitter and current health

Soooo reluctantly I'm going to announce that this winter has been the healthiest I've ever had. Usually I dread winter and the lead up to this one was exactly the same but the reality was much different. There was a rather soul destroying relapse over Xmas day which left me barely able to lie on the sofa but other than that it hasn't been too difficult at all, I've now managed to cut out all painkillers and haven't had any relapses since that day. Now I'm tentative to say improvement but it certainly feels that way, I'm not going to ignore anything positive no matter how small.

That brings me on to my next POINT OF INTEREST. I've learnt an absolute shitload about M.E since joining twitter and received some excellent advice, which I credit my improvement to. So thank you to everyone I've engaged with, it's not just advice and info but being able to talk to people going though the same thing and realise I'm not alone *wipes tear*. I feel less guilt, less stress and I can moan about being ill without getting on people's nerves. Sorry, I have to brap. Brap.

And another for fun. Brap.

Symptom time

I don't really want to do this as I try and avoid talking about the fact I'm ill, it's only recently I've taken an interest in research and so forth. I never really saw the point before but having joined twitter I've become a lot more comfortable talking about research, hypothesis, GPs, symptoms and so forth. I don't really feel guilty about it anymore. HIGH FIVE.

The most reassuring thing is reading that other people are in the same situation as you and have the same symptoms, only a sick person could understand how this feels.

I know I covered some of this in an earlier post but I wanted a more complete version.

My ME seems to fluctuate quite a bit and for relatively short periods. Relapses last about 2-4 weeks for example.

Pain is sporadic, from background aches to pain that puts you on the verge of tears and covers your entire body.

Numerous gastro problems. Acid reflux, lactose intolerance, bloating, possible IBS but I don't want to self diagnosis and don't see the point getting one.

Fatigue! This is not tiredness, I do not get particularly tired. Fatigue means my body will not move, it's like flu but without much of a fever. Sometimes difficult to talk.

Difficulty regulating body temperature, hot flushes are common (not fever).

Neurological symptoms. Blurred vision, dizziness, inability to concentrate, difficulty finding words, extreme forgetfulness (sometimes forgetting something moments after being told even when trying hard to remember).

Mental health problems. Not really much of an issue, suffered from depression after 3/4 month but treated successfully since. No problems with anxiety.

Alcohol I can tolerate but hangovers are very long and not much tolerance. I can't cope with caffeine well, feel confused and can easily stay awake for 24 hours on a single cup.

Most importantly all these symptoms are not improved by exercise. Exercise has put me in relapse every single time.

There's probably a few other minor things I can't remember right now (lols) but that's the main stuff. Hope people can relate.

I do like terrariums

Here's a few of, some finished, some unfinished. All housed poison dart frogs. Unfortunately I'm pretty much terrariumless at the moment and all of my frogs are gone, I had quite a few tropical tree frog species too and at one point 4 salamanders. 

After having to leave work I was forced to sell everything, including my snake but fortunately finances are a bit better now and I have him back!

Animal pics coming later :)

Bee Story

If I was a talking bee I would try and get all the other bees to talk aswell. If they didn’t I would go to other hives and look for bees that were like me. If I couldn’t find any I would feel very alone. However I’d be the sort of bee that laughs in the face of loneliness, so I’d get through it.

There are also lonely people in the world, so I could talk to them. Maybe our friendships would last a lifetime. I wouldn’t be eligible to drink legally in pubs so if I could make friends with someone over 18 they could buy me scrumpy.

Obviously the ideal situation would be finding or teaching other bees to talk. We would discuss important bee issues like, how are we doing for honey? Is hexagonal really the way? Why can we sleep with only one woman and why is she so fat? We could talk all through the night. We might become lazy and decide work is for suckers and start some sort of bee revolution. I would name myself Bee Chevara and encourage everyone to revolt against the queen and make a more democratic bee society. I’m not sure how this would work though.

I do like fish tanks

This is one of my old ones.

Pros and Cons of keeping Lady Gaga in my fish tank

One of my most fulfilling hobbies is to think of ways in which I can punish celebrities that haven’t really done anything to me personally, but nonetheless deserve cruel, unusual and rather elaborate punishments. This is pretty much everyone. Today I’ve been deliberating over the pros and cons of keeping Lady GaGa in my fish tank, it’s not very big but I have one of those fake chests that opens up and blows bubbles. Kids love it, I don’t have any kids though.

Against

1. She would scare the fish.

2. She wouldn’t fit.

3. She would attract algae.

4. She would fill it with adverts and product placement whilst still maintaining she’s controversial. This is not goof for PH levels.

5. She would probably request the water to be Evian. I prefer to use government juice.

6. She would probably need an entourage and thus a larger tank.

7. Something unoriginal about her looking like a man.

8. It would cost me a lot of money. I don’t have money to spend on keeping talentless fads alive.

9. That idiotic meat dress would cloud the water and go rotten within hours.

10. I don’t like her.

For

1. She could drown.

2. She could fit if I broke her legs.

3. I can’t hear her sing when she’s in a fish tank.

4. She could take care of my water changes.

5. I don’t like her.

6. That idiotic meat dress would cloud the water and go rotten within hours.

7. I could take pictures and send them to her 12 year old fans, or her family, depending on who would offer the highest amount for her release.

8. It would give me a great sense of satisfaction. Although it’s only one out of a billion useless, non entity, creativity sucking, mind dumbing, musical monstrosities removed from the collective genepool of profit driven suck ups that pollute the industry.

9. Lilly Allen would kick up too much of a fuss, probably write a shit song about it in that annoying talky I’m just a normal girl slightly less annoying than my dad type voice.

10. I could enter it as piece of abstract art at the Tate Modern.

How to plan an ME day out

They're rare, they're short but when they come along they give me an emotional boner. But don't fuck it up, the last thing you want to do is end up slumped over the pavement crying out for some heroin or whatever pain meds you crazy kids take these days.

There are rules damn it!

Rule 1: Know your limits. Easier said than done, I can probably get a half mile of walking in SPREAD OVER A DAY. Don't plan to do more or you'll be worrying and not enjoying yourself, plus you'll F your body up AND NOT GOOD K.

Rule 2:  Plan. Know how far you need to walk to do whatever it is you're doing! I went for a meal in London the other night. First thing I checked was the walking distance between the station and the restaurant, I even booked partly based on this. It's nothing to be ashamed of, it means you can have a night out like one of those mysterious healthy people.

Rule 3: Take supplies. That's right. Prepare for worst case scenario. Take your meds, take whatever you'll need should you come over a bit goofy. I pack the following in the car, meds, deep heat, water, snickers bars (I'm evil when hungry), lucozade/coke for energy, blankets, pillows, comfier clothes if I get uncomfortable or for the way home.

Rule 4: Make sure you can go home if you have to. This could probably go under planning but it's so important I think it needs its own number. Yeah, I said that. It's getting its own number. What you want is A GET OUT PLAN. Who else has get out plans? Superheroes. That's fucking right. Make sure you have a lift who will leave at a moment's notice, money for a cab, the train timetable to hand.

All of this should hopefully result in a less stressful evening, no pressure should you become unwell, no anxiety...MAXIMUM FUN. Well, I hope so anyway.

Peace for 2013 bitchez.

Having /M.E/CFS and reflections on the past 10 years

*Originally written in April 2012, amended slightly*

Prepare for the self pitying :)

I fell ill with ME/CFS (official lazy diagnosis) around this time in 2008, so 5 years I’ve been ill now. My 20s have been pretty much plagued with ill health, at 20 I had a bad case of glandular fever (mononucleosis) which in turn triggered a bad case of depression. It took me a good few years to recover but by age 25 I was doing well. I had a great job which paid a good wage, a good social life and I was regularly exercising. Swimming a mile once a week and attending the gym. Then, one day at work around 11am something hit me. My arms felt heavy, my head slumped to my desk and I had only one thought, I’m coming down with the flu and I need to hit my bed. A few hours later and the flu hadn’t hit, I just felt all the same sensations as having flu but without any sign whatsoever of the fever or migraines. My muscles hurt, my back, legs, arms, everywhere but that was it, nothing else seemed to be happening. Two weeks later I went back to work thinking whatever this was would eventually disappear, but it didn’t. 

A month later I went to see the work doctor and explained the situation, I had come back from Mexico a few months previously so that was his first though, that I’d picked up some tropical disease. So off I went to the tropical disease specialist, nothing. A hundred different blood tests, nothing. Apart from a low functioning immune system. I’d also had an endoscopy recently for a stomach complaint, so another avenue to explore was that the procedure had aggravated the epstein barr virus in my throat. Possible? I don’t know. Unfortunately due to staff cuts my doctor left. I feel like I’d be in a better position now if I was still under his care, very knowledgable and very understanding. My diagnosis switched from Fibromyalgia to ME/CFS. He put me on antidepressants as after 3/4 months of being ill I was starting to become depressed. I knew the signs and wasn’t prepared to go there again. He had also sent me to a fatigue specialist to get my diagnosis/2nd opinion. I didn’t like him so never went back.

3 years later my health had deteriorated to such an extent that I had to give up work, having previously been working part time hours and missing almost 12 months in total from the last 3 years or so. It was a hard decision to make but was no doubt for the best. My partner and I had to give up our beautiful home and move in with her parents, we’ve been here 9 months and fortunately are now in a situation where we can get our own place again, thanks to a friend who has agreed to share with us and thanks in part to the government who’ve been on time in returning the excess tax I paid last year!

I don’t really see my current doctor and have refused referrals to CBT treatments. I told him I think they’re absolutely ridiculous but he’s convinced I should at least try them and see before judging. After the recent PACE trial I dare say I'm correct. I became frustrated with the medical profession over it’s sometimes antiquated and irrational views towards M.E/CFS.

So what’s having this illness like? For the most part I’ve accepted it but relapses are still traumatic and sometimes frightening. I’m forever living in fear that I will deteriorate and be permanently bed bound, unable to face daylight. The number one cause of death for people with this illness is suicide or heart attack, sometimes I can understood how hard it would be to deal with the extremes of CFS/ME day in day out and be forced to see suicide as the only option. On some level I’m lucky, I can still go out and see my friends, go on holiday, read, drive but just plan my day so I use as little energy as possible. On bad days it’s hard to stand up but on good days I can go for walks and be relatively active throughout the day. You probably wouldn’t even notice I was ill to look at as the only time most people see me is when I’m in remission and I have the energy to go out.

As for the physical symptoms well they fluctuate, fatigue is obviously a major part of it. Think the sort of fatigue you have when you’re suffering from flu, that’s how it is at it’s worst. Throw in the intense muscle aches but picture it without the fever. I suffer from brain fog where I forget what I’m doing and become confused and agitated, words don’t seem to make sense and sentences stop midway and I’ll wander off having completely forgot what I was doing. This usually happens everyday. I’m slowly developing food intolerances and suffer from acid reflux.

I miss working and my independence but I’m not unhappy. I’ve learnt to appreciate things I’d never have if I hadn’t become ill and I have some great people in my life for which I’m eternally grateful.

March 2013 update:

Not much has changed, my health is still the same, I had a relapse throughout December and experienced a bad period of mental health. I've since taken on a course of meditation, have began to put more effort into my pacing and  now avoid all painkillers as basically, they don't help. The last two months have been pretty good, I can usually get out once or twice a week depending on what the activity is. I'm also slowly starting to develop a small plant nursery which brings in a little extra income, hopefully I can develop it further but don't really have the funds to do much.

Welcome

Hi, this is my new blog, I've had a million in the past about exciting topics such as politics, history sociology, funny houses, fish tanks and frogs.

This one will be about ME. And my M.E, basically because I keep finding fantastic articles I wish to save and have nowhere to put them, plus I need a place to think out loud....again, so I don't forget.

Here is a picture I made of Ayn Rand. Hahaha Ayn Rand.

I don't like Ayn Rand. I also have M.E. I don't like talking about in the reality world because it's boring and makes me want to punch crocodiles.

This is my first post and I welcome you all to my world.