A Moment for Meso

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

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

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

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

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

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

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

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

They won’t know

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

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

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

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

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

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

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

Adjusting to discipline

I started writing a while back about adjusting from chronic illness/disability to what is considered ‘normality’, since it’s not covered very often and a lot of people had questions about it. Like I explained in the first post, “I’ve not been writing because I’ve been doing, and for me writing requires a lot of space to think”, but that’s part of adjusting, too… working out what to make space for and how to do it.

I have a little space now so I’d like to continue where I left off, way back in March.

I found the struggle back then to be with discipline, and not having a schedule really didn’t help with that. I wasn’t using the time I had in a way I considered good, because I was no longer disciplined in making sure the housework was done, getting up at a reasonable hour (etc.) – and that last one is especially hard if I don’t have any specific reason to be up at a certain time! I spent far too many mornings just dozing, in a state of being too sleepy to get out of bed but not actually sleepy enough to sleep. Also, sleep was kinda my default state for almost 9 years. I remember hating sleep so much – I’d rather use time on something enjoyable or necessary than on dozing in bed, but it took work to break out of it.

I was working from home a lot too, both doing housework and lesson planning for tutoring, and they suffered from lack of discipline. I wanted to get them done in a certain amount of time but the push to actually do that was very difficult. I think discipline is a “use it or lose it” skill – I don’t blame myself for that loss, I had no choice, but I still find it a struggle to re-learn.

It’s amazing how quickly you lose it and how long the retraining takes.

There were a whole bunch of other things that I suddenly need to do, too. Eat healthily (since I can actually cook!), exercise, go to bed on time, do laundry. I had to remind myself to do things just because it had been so long since I was able to do them that I forgot that they needed to be done. Going to church on a Sunday felt utterly bizarre, and bathing? Oh yes, bathing. I used to shower every day before I relapsed, and then suddenly I could only bath every… month? Once a week at best, and that was pretty rare. And required supervision. Awkward.  Suddenly I didn’t have that restriction anymore, but I also didn’t have the habit! Don’t worry, I didn’t go for more than a few days without remembering – is it okay to admit that on the internet? – but I just would plain forget that it had to be done. Probably a good job that I like showers so much!

It basically felt like I was learning it all from scratch. But I also had a better foundation, the knowledge that I did actually need discipline (and a schedule), and that I could build my life on top of the things I knew to be important, instead of trying to cram them in at the edges.

Growing Flowers

This post is part of the ME Awareness Week Synchroblog, hosted today at http://hiddencourage.wordpress.com/2013/05/08/counting-our-blessings-me-synchroblog/ with the topic “The Positive Side”. To join in, head over and post a link or comment, or tweet with the hashtag #MEAW13

I really love these song lyrics, they sum up pretty well my thoughts on bad experiences:

“I won’t regret
Cause you can grow flowers
From where dirt used to be”
Merry Happy (Kate Nash)

Chronic illness sucks; ME is its own special form of suckyness – but it’s in the midst of the dirt that the flowers grow.

I feel like the most positive thing that came from illness (and there are surprisingly a lot, too many for a single post) was the product of endless time to reflect. I think it changed me a lot, and I hope those changes were all positive. I learned a lot about how to live and prioritise, things which I still find difficult to apply but which I hope I never forget. Here are just a handful of those lessons:

  • I learned that telling the truth about suffering breaks down barriers, and that sharing stories opens people up in a way which bare facts don’t.
  • I learned about the important things in life: that they aren’t found in meeting deadlines or endless activity. There is value in just living, value which isn’t measured by your grades or your paycheck. Whether you’re an overachiever or utterly dependent on others to survive, life can be worth it.
  • I learned about enjoying myself. There’s plenty of goodness in small things, and it’s worthy of attention. Life is already full of beauty and peace, and appreciating that brings a sense of fulfilment.
  • I learned about taking care of myself – I need to rest, eat healthily, have time to myself to reflect as well as my need for socialising. I need to pray and spend time with God, or I go off track. I need to pursue the character I value, not grow aimlessly.
  • I learned that I should put my time into what I value, not squeeze it out to the corners of my existence. I will never have enough time or energy for everything, so I need to work out what is important to me and focus on that.

Of course I forget them, so maybe the lessons aren’t fully there yet – but I’m on my way. And since I got so much better, I’ve been learning a lot more… mostly about how little I have it together!

I look back though at those dark times, and realise how much light there was in there, all those flowers growing in the midst of the dirt. Like Abigail, I think if I was offered chronic illness I would run for the hills – but I certainly won’t turn a blind eye to the good things that came of it, however small.

Me Awareness Synchroblog

Blog topics for ME Awareness week 2013!

Here are the dates/topics for the ME Awareness Week Synchroblog! Hashtag #MEAW13

May 6th Being a Good Family/Friend/Carer
Tips, advice, warnings and stories of what it takes to be there for a loved one in need.
Hosted by Arielle at Dear Little Disease
https://dearlittledisease.jux.com/

May 8th The Positive Side
Counting our blessings; good things that have happened since, or as a result of becoming ill.
Hosted by Abigail at Hidden Courage
http://hiddencourage.wordpress.com/

May 10th Living with ME
From coping with specific problems, to the stories of every day life; advice and renumerations about life with ME.
Hosted by Barry at Barry John Evans
http://www.youtube.com/channel/UCCrsPBrO__GVcD3rm8nomjw/videos

May 12th Research & Controversies
The disease(s) with a thousand names and ten thousand theories. What’s your take on it?
Hosted by Leigh at A Path Through the Valley
https://apaththroughthevalley.wordpress.com

Or feel free to post about ME Awareness any day of the week.

Want to take part? Here’s how:

1. Produce your own post on the topic, as narrow or broad as you like. It could be a blog post, video log, story, poem, picture… it’s your take on the topic and what you want to say.
2. Post a link to what you’ve produced in the comments section. You might want to provide a short description, too.
3. Check out some of the other links; leave comments if you can, and share what you like!
4. Tell people about it – this is about raising awareness, after all.

I’ll try to maintain a list of everyone I’m aware of who is joining in so people can just browse, so be sure to let me know if you want to take part.

There are also some images you can feel free to use (currently hosted by imgur.com). The first three have transparent backgrounds, not white.

Discrimination (BADD2013)

This post is part of the Blogging Against Disablism Day 2013 in the category “Definition and Analysis of Disablism/ Ableism”. To participate and/or have a look at some of the other posts, check out the main page here, on Diary of a Goldfish.

dis·crim·i·na·tion

/disˌkriməˈnāSHən/

Noun
  1. The unjust or prejudicial treatment of different categories of people or things, esp. on the grounds of race, age, or sex.
  2. Recognition and understanding of the difference between one thing and another.
Synonyms
distinction – discernment – differentiation

(Thanks, Google)

I find the whole topic of discrimination to be difficult, because of the inherent confusion involved in any word with multiple meanings. Discrimination can be, and often is, good. Discrimination about disabled people can be highly necessary. For example: when I was in a wheelchair, my husband would help me to get down or up stairs, but I never found him helping his friends with stairs. That’s discriminating (2). And it was a good thing.

Of course, when we talk about discrimination we are generally talking about discriminating (1), being unjust or prejudicial about someone. There’s a lot of discrimination against people with disabilities- outright, hurtful, deliberate discrimination- and that’s bad. It’s awful. It needs to be stopped, and fought against. Changing that requires changing peoples attitudes entirely, it requires convincing those who see the disabled as less, in equality, and raising up new generations that value people for being people, not for being white, male, cis-gendered, fully-able, healthy people**.

A lot more “discrimination” comes accidentally though, because it can be hard for the differently-abled* to see the line. This is the point at which I find it difficult and confusing; the point at which I’m not sure if I’m being discriminatory, or if I’ll be seen as such even if I’m not; the point at which good discrimination can be taken as bad discrimination. This is where I wish I could read minds so I knew what behaviour would hurt people and what wouldn’t.

When we offer to help our grandparents carry their shopping, do they feel loved or discriminated against?

When we speak slowly and clearly to someone who has trouble understanding speech, do they feel loved or discriminated against?

The point is, that people with disabilities often do need to be treated differently. The disability needs to be accounted for. But often, the extent is misinterpreted. When we end up patronising someone who has one leg, we have moved beyond good discrimination to hurtful, bad discrimination.

I think the only way out of this is understanding each other better. Open communication to discover what help (if any) is needed, and what help is just patronising. But I know that that’s not easy, or maybe even viable. Everyone is different, even the same illnesses and injuries come with different experiences, and that’s a lot of communicating and understanding to do.  I don’t think we can ever be perfect, but I think we can be better.

There’s also the problem of trying to gain understanding being perceived as discrimination. We like to pretend that the person on crutches isn’t really on crutches, as though they might be offended if we realise they are on crutches. Well, what if they are offended? That’s hardly the solution we’re looking for. But I don’t see any other way around it, than understanding being the best solution we have. Communicate… carefully? Hm. It’s too difficult a subject to have straightforward answers in 500 words anyway, what did you expect?

So, what are peoples thoughts on disability discrimination, and how to combat the negatives? What experiences have people had?

Blogging Against Disablism

*I say differently-abled not because I have suddenly embraced PC, but because it is just as possible for someone with one disability to be discriminating against someone with a different disability, as someone without disability to be doing the discriminating.

**Our culture has far more issues than just prejudice based on ability.

 

Speaking up for ME (ME awareness week 2013)

ME Awareness Week 2013 is coming up, so who’s up for a synchroblog?

The idea is this: a different topic for every day, all related to ME of course, with different hosts. The ME Awareness week theme this year is “Speaking up for ME”, so let’s help each other speak up!

What does a host do? A host picks a topic they like, and writes a post inviting people to contribute their own posts on that topic on the day that topic is scheduled for. Then later on, they post some of their highlights from the contributions. Of course, given that this is ME, I’m not expecting that hosts will be able to check every single link, don’t worry. It would be great if hosts could commit to some kind of post for every day of the synchroblog, linking to whoeever is posting that day and providing their own take on the topic, but I realise that might be too much for some.

What does everyone else do? Produce something on the topic for the day, then head over to the host’s page and post a link to it in the comments section. It doesn’t have to be a post written especially for the day, old ones are fine too, though obviously fresh ideas are good. The topics will be made known in advance anyway, so if you really want to write on something, you’ll know when its for. You don’t have to post every single day, or just once – post as much as you are able and want to do. It’d also be helpful to put a line in your post explaining it’s part of the synchroblog, and forwarding your readers over to that day’s host.

Also, be sure to check out the links in the comments section to see if there’s anything there you like, and support other people working towards raising awareness for ME! Encourage people to check out the links for the day, especially if its a topic where you feel like your voice isn’t being heard on its own and could do with the bolster.

Of course, when I say ‘write a post’, I’m not wanting to limit that to writing a blog. Vlogs, art, poems, stories, songs… whatever. This is about each of us raising ME awareness in our own way, joining our voices together. We don’t all agree on everything in this community, but we do agree that ME totally sucks and the situation surrounding it needs to change

Who’s it open to? Anyone who wants to raise some awareness about ME. You could be a sufferer, recovered, a friend, a carer, a family member, or even totally uninvolved until now. If you know it’s bad and you want to get the message out, you’re welcome on board.

What do I do now? Well, if you want to get involved as a contributor, hold tight for May 6-12th, and check back here to find out what the topics are. If you think you’d like to contribute then it’d be great if you could leave a comment or send me a note saying as much, so I know if people are on board for this or if we should scrap it.

If you’re interested in hosting, please contact me! Obviously “spaces are limited” on that, but hosting is more work than contributing so I’m not expecting so much interest. I’m not sure yet if it’ll be 3 days or 7, or even if there’s enough interest to go ahead at all, so don’t be shy. And if you want to be involved but this doesn’t look quite like it will work for you, remember it doesn’t have to be exactly the idea I’ve laid out here. Let me know your take on it, and I’ll see if it fits. You can get hold of me on Twitter or leave your email in the comments section and I’ll get back to you.