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Category Archives: Myalgic Encephalomyelitis

Weekend Drama

This weekend was our first wedding anniversary. While we are rather limited in celebration options, I had arranged to have a raid night off and we planned on having a lovely day together just enjoying the company. Things never quite seem to work out as we plan.

Mr Wench managed to have an accident at work on Thursday, hitting his head and cutting a deep gouge along his scalp. He’d been advised by the first aid team to just leave it as they didn’t think it would require stitching. On Friday morning, however, it was still bleeding so Mr Wench woke me up to get a second opinion on whether he needed to go to the hospital. I got up, took a quick look and confirmed that I thought a hospital visit would be necessary…and then collapsed on the floor.

I’m really not the sort of person that faints at the sight or blood or anything and I’d been checking on the progress of his head wound the day before. One of the symptoms I get with ME when under stress or particularly worn out is that my temperature can suddenly go up or down without warning. I also react badly to temperature rises (nothing to do with ME, just a bonus quirk) so after all the stress of keeping an eye on Mr Wench and just generally having been a little run down, I woke up, my temperature rose and I overheated. Annoyingly, I’d managed to collapse behind the bathroom door and while Mr Wench had seen the sudden colour drain from my face and checked my fall, I was now blocking the bathroom door shut and he couldn’t get out. Mr Wench is not just my husband, he’s also my carer. Having watched over me for so many years, he thankfully realised this was likely a temperature issue and covered me in cold damp towels and flannels until I started to be responsive again. After cooling down again, I was just exhausted and a bit bruised and he was able to head on to the hospital to get his head treated with medical glue.

Our anniversary celebrations were a little more quiet and subdued than we’d planned, but it reminded us that we have each other to lean on.

In World of Warcraft, I have done very little this week outside of raid time commitments. My auction sales and stockpiling are becoming more reserved as we approach patch day. I have stopped restocking PvP armours and am just selling off the stock I have left, as it will be mostly useless by patch day. Jewellery, enchants, gems and the like will still be useful so I cam still keeping them stocked. The rest of the time has been used to stockpile more materials. I have been focussing more on Magnificent Hides, Exotic Leather and Windwool Cloth this week as my supplies in each are rather low and I feel it will be impossible to have too much! Witht he increased amounts of each used for new daily coolowns, I suspect there may be an increase in demand leading to higher prices which would choke my supply line or force me to raise crafting prices.

Show Me The Money

215,118g

That’s down by just over 110k from last week but the increase in stored materials and supplies is huge. As I’ve done this over the course of a few weeks, I have been able to buy just the low priced items rather than paying much more when demand is higher. One more week until I start to see my finances going in the right direction again!

 

 

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Treating ME

A quick note here about something I stumbled across today. As the second edition of the Chronic Fatigue Syndrome: A Treatment Guide has now been released, the first edition of the book is now free to read online at http://cfstreatment.blogspot.co.uk/

You can also find the details there for the new edition which will undoubtedly be much more thorough and up to date as so much more research has been done since the first book’s release in 1998, however the information in this first book is still very relevant.

For anyone wishing to know a little more about the illness of many names (CFIDS – chronic fatigue and immune dysfunction syndrome, CFS – Chronic Fatigue Syndrome, ME – Myalgic Encephalomyelitis) this is an easily accessible source of information that will not cost you a penny.

 

 
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Posted by on August 14, 2013 in Myalgic Encephalomyelitis

 

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Look Through My Eyes

With the distinct lack of new content in World of Warcraft at the moment, I have had very little incentive to blog about it, so I’m afraid that today is another ME/CFS related post.

One of my old school friends has a child with autism, and in her quests to try to understand him better in order to improve his life quality, she reads a lot and visits many websites. Today she linked me to a video on YouTube which was made to help show people without autism what the world looks like to someone on the autistic spectrum suffering from sensory sensitivity.

The video stunned me.

As I may have mentioned before, ME/CFS sufferers can experience a wide range of symptoms and the selection that one person may get will often differ from the selection of symptoms that the next person has. There are common symptoms that almost all people with an ME diagnosis have in common, but the list of secondary symptoms is a seemingly inexhaustible list that fate appears to take a random selection from. I think of it as a kiddies sweetie pick and mix in hell!

The reason that the autism video meant so much to me was that I suffer from sensory overload as a secondary symptom of ME/CFS as do a few of my friends. This was the first time I’d seen someone try to convey in video format what we see, hear and feel in a normal day. It had never occurred to me to try to show it this way. There are many illnesses and conditions that produce similar effects, for example it is frequently a symptom in PTSD cases. We try to explain to people what we mean, but its difficult to show someone.

This video attempts to convey the difference between someone that does not suffer from a form of sensory overload and one that does. The first view is that of most people, and the second with sensory overload. The brightness is a little overdone on the second clip from my experience, but it does get the point across. If you have ever wanted to understand a little more about autism or other conditions that have sensory overload as a symptom, have a little look. Maybe it will show you why I usually wear sunglasses even on cloudy days and often have earplugs in if I’m in the wheelchair!

 
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Posted by on June 2, 2012 in Myalgic Encephalomyelitis

 

Hear us

One of the key problems for sufferers of Myalgic Encephalomyelitis is that we are ignored. Our illness works against our ability to be seen and heard. ME is a difficult enough condition to try to explain to people, but trying to do it whilst exhausted and confused makes the task near impossible. Making public displays and being seen and heard in the community requires energy and many sufferers are unable to tolerate the noise and  brightness that would be required to do something as simple as be present at a demonstration.

There was a time when I thought that all we needed was to have someone famous develop ME. Not that I’d wish it on anyone, but it seems that once a celebrity develops an illness the media are all over it. I realised after a while that it wouldn’t matter. There have been several celebrities diagnosed with ME including one of my idols, Michael Crawford. There’s plenty of interest in stories about these people but how good a story can you really make about someone lying in a dark room, without the energy to talk to you? We can’t fight our own battle, and the medical and governmental personnel that decided years ago to back the wrong treatment can shout louder and be seen. All we can do is rely on others to fight our battle for us. The people who have lived with the illness and managed to recover, the people who have cared or are still caring for severely afflicted ME sufferers or the few medical professionals that continue to fight for a cure.

Recently an hour long documentary film was produced in the UK by Natalie Boulton and Josh Biggs  – the mother and brother of a severe ME sufferer. It has been assisted by many people giving their time and skills voluntarily to help us be heard.

You can find their official site here. Please help us be heard.

 
 

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People with ME/CFS don’t have a sense of humour

Today I saw yet another media article about ME/CFS and whether the condition was real.  There is nothing unusual about this, each week another handful of these are written.  The thing that made me write today’s post however, was a comment response to the article that said that people with ME/CFS don’t have a sense of humour.

He is entirely correct.  Where our health is concerned, ME/CFS sufferers do not have a sense of humour.  There is a very good reason for this.  Every week since my diagnosis I have watched new articles released in newspapers, magazines, blogs or on television all looking at ME sufferers and how convenient it is that none of their illness can be proved.  Occasionally a positive article will slip through the net describing realistically what it is like to struggle through each day with such a debilitating illness, or that gives a positive reinforcement to the neurological/physical aspect of the illness.  These positive articles are extremely rare, however, and the media as a whole seems to continually spawn articles that confirm in the eyes of the general public that people with ME/CFS are lazy, lying hypochondriacs or are in some way mentally impaired and requiring psychiatric treatment.

For a physical, neurological illness.

There does appear to be a distinct lack of articles telling the sufferers of other severe debilitating physical illnesses (like cancer for example) that they can be cured with a little psychiatric treatment, or advice articles telling people with AIDS that its all in their head and a little bit of exercise and self-esteem would make it all better.

Of course there aren’t articles telling the world that sufferers of Multiple Sclerosis just need a bit more fresh air and exercise and to stop being lazy.  That would be considered rude, politically incorrect and insensitive.  Yet ME/CFS sufferers have no such considerations as many of these articles or documentaries are backed by medical professionals.  If only we could cure all the cancer victims in the world by telling them they aren’t really sick.  We can’t.  Just as we can’t cure the ME/CFS sufferers by doing the same.  It is socially acceptable to continually belittle and demean the sufferers of this misunderstood illness which has already taken much of their life away.  How dare they not see the funny side?

I don’t have a sense of humour about ME/CFS, just as I wouldn’t find jokes about AIDS funny, especially if I were HIV+. Surely that is a natural reaction?

 

 
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Posted by on April 5, 2012 in Myalgic Encephalomyelitis

 

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How do you cope with being ill?

Today’s post is inspired by a friend that asked me a random question today.

How do you manage to have a life when you tell me that you are so ill?

For me there is a simple and short answer: because my day is prioritised around anything important.

The short answer though is really only understandable if you can see how a regular day is for me.  The long answer would involve all the hundreds of things each day that are done without even thinking anymore to make this happen.  I’ll try to show you what I mean.

I live in a small flat just outside London, UK.  The town I live in is quite small, stuck between two large towns.  The street our building is located on, is closer to the main high street, but tucked aside with its own private community garden and high walls that seem to prevent the rest of the world from intruding.  It’s rather quiet.  There is very little noise from traffic.  My neighbours are mostly elderly or rather private people and as such rather considerate in noise levels.  Why am I explaining this? One of the things that tires me out quicker than anything else is strong sensory input.  Loud noises, bright lights, strong smells and so on.  Our home is ideally situated to help reduce their effect on me.

The majority of my day is spent in our living room.  It is fairly small, so if I need to move about there are many pieces of furniture to rest against or grab hold of.  There is no noise to disturb me; no television in the background or music playing, no children playing. Even Mr Wench is asleep in our bedroom for the majority of the daytime as he works the night shift.  The curtains remain permanently drawn closed unless a specific reason requires me to open them.  The entire flat is a small cocoon of quiet and darkness.

I know this is not so for other families and that in most homes I could not do this.  However, most days I get to enjoy my comfortable, quiet shell that protects me from wasting energy.  At the weekends I am much more exhausted and that’s purely by the introduction of Mr Wench watching television in the background or needing lights on to be able to see things he is working on.  Visitors to our home require more light and inevitably bring more noise, so these have to be rationed into acceptable times. This is not normal behaviour obviously, but it has had to become normal for us.

Then we move to daily routine.  I have a collection of loose-fitting tops and jogging bottoms, along with some pyjamas that are all easy to pull on and off as well as comfortable to wear.  These are essential. They stop me wasting valuable energy choosing items to wear and fiddling with buttons, ties and zips.  Things like brushing my hair or teeth are done whilst sat on the closed seat of the toilet which enables me to rest the active arm on the cistern to take the weight off my arm muscles.  A bottle of water sits on my computer desk so that I do not have to get up just to get a drink.  A high stool stands in our kitchen so that I can sit whilst trying to wash up or prepare food…the list is endless.

To most people, meeting a friend for a quiet lunch is a simple thing.  For me, its something that requires several weeks of planning and much rest afterward, often more than one day’s rest.  Consider the activities and atmosphere I mentioned above.  Now consider how many of those things need be altered for lunch with a friend.  It is not just the energy required to get to the location, eat and chat with my friend and then return home.  The clothing has to be changed into more difficult things to wear in order to be presentable in public…perhaps even make-up may be involved.  There will be traffic noise and noise from the crowd around you, smells of food and exhausts, sunlight and lighting inside the lunch venue.

This weekend I travelled to a reunion to see friends I had not seen in about twenty years.  I could only stay for a few hours before I was struggling to hold my head upright, but it was worth every second.  Just being able to talk with people who have meant so much to me over the years and that I’d lost contact with was so important.  Despite taking the wheelchair and trying to make sure I did nothing else that day, I still was in pain and exhausted when I reached home again.  In fact, it took me a couple of days of little more than resting to be up to writing this.

So, why did I put myself through it?

It’s important to still feel that you have some semblance of a life, no matter how cut off you may feel from the rest of the world.  Those few hours sharing memories with people who I have loved for decades showed me that even if 20 years go by without seeing someone, it’s still possible to just carry on as if you had seen them the day before.  Thank you, girls. That was something truly special to me.

 
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Posted by on October 11, 2011 in Myalgic Encephalomyelitis

 

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Finding a champion

I recently wrote about the articles in some of the more respected UK newspapers that were pure opinion being presented as fact about ME.  I know I am not the only person that has done so, and in fact I’d imagine there are very few bloggers that focus on ME as a topic that could keep silent about this.

It was quite simply yet another kick in the teeth.

Professor Malcolm Hooper responded at length to these articles on our behalf.  This isn’t the first time he has done so, and sadly I fear it is not the last time he will be needed.  I’m not going to reproduce his words here as so many have already done so on other sites.  In case you haven’t read the article yet, you can find it here.

Instead, I would like to thank Prof. Hooper for his actions.  One day people will look back at the history of ME and how abusively its sufferers are being treated and feel shame.  There will come a time when the world will see Simon Wessely’s persecution of terribly sick people as an unacceptable outrage.  People will demand to know how this went on for so long when we have so many organisations and laws in place to prevent precisely this situation from occurring.  When this time comes, I sincerely hope that Prof. Hooper is recognised for the work, research and effort he has put in to fighting the cause for a group of people who are struggling to fight back.  I suspect however that his efforts may get lost as time marches on, so I want to take this opportunity to say that it never went unheard.  Even though currently the people who should be listening are turning away either through ignorance or conflicting loyalties, we heard.  We recognised what you were trying to do for us and we appreciate that you fought for us when we couldn’t fight for ourselves.

 
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Posted by on September 16, 2011 in Myalgic Encephalomyelitis

 

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