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Tag Archives: M.E.

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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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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Why are people threatening the lives of scientists?

In the past week, there have been several news stories about medical science professionals receiving death threats, and having people show up to their lectures carrying weapons.  For more information on this, please feel free to check out the article written by Robin McKie for The Observer, or this one by Max Pemberton for The Telegraph.  The second one is particularly amusing for its presentation of unsupported theories as fact and for its disregard of the medical opinions of hundreds of medical professionals/researchers and the World Health Organisation in favour of the opinion of a very small group of psychiatrists whose theories have not been proven.

Part of me died when I read those articles.  Don’t get me wrong, I don’t condone this sort of behaviour, but the actions that people like Simon Wessely are taking are worse.  There are legal systems in place to punish someone taking a knife into a lecture theatre in order to threaten the speaker.  There is nothing to help the many people that are struggling daily to exist with M.E and yet are being removed from the care of their families if they try to refuse treatment that is causing their condition to worsen to life-threatening levels.  How can this be legal?  These laws were put in place to help people that were being denied the treatment they needed.  They are being abused in ways that to my opinion are equivalent to severe torture.  I struggle each day to get through many tasks which most people would consider basic needs, and for me this is painful and difficult.  But I am by no means one of the worst cases.  I have days where I can walk for myself (albeit rather slowly and needing support) and I am only occasionally unable to leave my bed.  There are many that never see the outside of their room.  How can it be right to be forcing these people into treatments involving physical activity that will reduce their quality of life, small as it may be, into nothing. I can only imagine that these “activists” are seeing this as the last possible way to carry a message across that may save the life of people they love.  I do not agree with the actions, but I can certainly understand why this may seem to be the only solution.

Science is about understanding the world around us and finding out truths.  It is not about creating a theory and then adjusting the world to fit into it.

This is the news report that should have been in the media.

Taken from GetwellfromME.com by Giles Meehan.

 
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Posted by on September 5, 2011 in Myalgic Encephalomyelitis

 

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The insubstantial enemy

For me, the most difficult part of ME has been an inability to fight back.

In the past, if something has upset me, I deal with it.  If a situation isn’t working, I fix it. I’ll admit that sometimes I get lazy and it may take a little while for me to change the situation, but I don’t feel comfortable if things are wrong and I don’t at least try to do something about it.

But where do you start to fight with ME?
I’m a social person at heart and feel miserable when I get lonely.  Yet having people visit me becomes exhausting incredibly quickly.  At the weekends when Mr Wench is at home and awake during the daytime, I become so tired just from the extra person being there or the noise from the television in the background.  Going out to visit other people now tends to require me to use the wheelchair, and although this means I can buy a little extra time to add to my mental strength at the cost of my physical strength, it still only grants a short visit and of course ensures that I will spend the next few days at least unable to move.

I’m a terrible patient.  I get frustrated and impatient very quickly and I like to be able to do things for myself.  I watch my body getting weaker each month and want to exercise to reverse the damage.  Yet exercising even just a small and gentle amount makes me more exhausted and the resulting recovery time leaves me more deconditioned than I started.

How do you fight an enemy that cannot be fought?  You can’t work at getting better, as the effort you put into recovering worsens the condition.  I find that in an odd sort of way I feel relieved on the exhausted days.  On the bad days there is absolutely no denying in any way at all that I am physically ill.  I can’t fool myself into thinking that I just imagined it and that there’s not really anything wrong with me.  On the good days that is more difficult.  Having to stop before symptoms are in control means that it is easy at times to wonder if you are just under some delusion.  The days where you misjudge the energy you had and go too far are almost reassuring.

Thank heavens for technology!  I think I’d go crazy without the internet enabling me to contact people.

 
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Posted by on September 27, 2010 in Myalgic Encephalomyelitis

 

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Don’t they know it’s the end of the world?

Yesterday was one of the days that I term “bad days”.  Everything ached to the point where it was too painful to move.  My mind felt confused and fogged and could not settle on any one thought for long and with no sort of clarity. On days like this there is nothing I can really do.  I can’t just push through it in the hope that it wears off, as it never does, and instead means that I will have several days like this in a row.  I can’t focus the muscles in my eyes enough to use the computer or watch television.  Noise is just irritating and makes my head hurt.  I gave in and spent the day laying on the sofa, occasionally playing a song on the MP3 player and then resting for a while before trying to listen to another one.

I was feeling rather frustrated and miserable, which really isn’t uncommon for me on days like those.  I don’t suffer from depression, but I defy anyone finding that yet again they are constrained to a day on the sofa with little that can entertain them to be happy about it.

One of the songs that I listened to became today’s title because it hit a nerve.  The song speaks of a person’s entire world ending because they have lost the person that they love and the amazement that nothing has changed for anyone else.  That your world has come to an end, but that everyone else doesn’t notice.

Don’t worry, I’m not about to tell you that Mr Wench and I are going our separate ways.  For me though, it does feel that a large part of my life has ended, or at least been put on hold, probably indefinitely.  I can’t spend evenings hunched over a sewing machine enjoying creating myself a new outfit, as I can’t concentrate on it for long enough and I make too many mistakes as well as struggling with the physical capability of sitting at the machine for any length of time.  I cannot sing, as my throat muscles tire too quickly and my voice constantly goes out of tune, much to my bitter frustration.  I can’t dance.  I guess that is obvious as that is pure physical exertion, but something I had loved doing.

The problem is that the world hasn’t ended for anyone else (except perhaps poor Mr Wench, struggling to look after me and keep me sane).  I watch the people I learned to dance with going on to perform wonderful dance shows. New dancers learning, surpassing me and going on to enjoy their performances.  Friends getting married and starting new families. Lives carrying on…

I’m just a stranger looking out at it all now.  People can’t sit back and not get on with their lives just because mine is on hold.  I wouldn’t want everyone to stop their busy lives either, not really.  I sit here trapped in my limbo, chatting through the faceless internet to the friends that I once spent so much time with as I cannot cope even with the limited strain of a phone conversation.  I keep myself happy with the thoughts of our wonderful wedding plans, that in reality we both know is unlikely to happen as I am just not physically capable of that level of social interaction currently.

Don’t they know it’s the end of the world? It ended when I got ME.

 
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Posted by on February 24, 2010 in Myalgic Encephalomyelitis

 

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