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!

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.

Adjusting in relationships

One of the biggest hits I had to deal with in being so sick was in my relationships with other people. Actually, it’s probably one of the areas with most adjustment, at least right now. It was just so hard to find the energy to spend on people, and more than that, hard to find people who would spend time with a sick person! Mostly I spoke to people on line, and didn’t see people in real life, except my husband.

Even then, it was different – not able to do things with him any more, even reading and playing games became impossible most of the time. My favourite thing was our “dates”, cuddled on the sofa watching whatever we could find online that seemed interesting to us both, but it felt so small compared to before. Now, we’re having to change it all up again, and that’s hard too. We grew out of the habit of doing things together, and we have to relearn it. Our hobbies have diverged a bit, and we’ve both become more used to doing things alone again, but we can do things alone, together, and even that’s so much better than him doing things whilst I rested. It needs more work, but relationships always take work. This one is the best I have and I mean to keep it that way. I mean to make it even better.

There are so many different people; people I spent so much time with online, and suddenly I don’t have so much time/energy to devote there any more; people who I was just getting to know, who I can suddenly spend time with ‘normally’; people I became very close to and can now develop that friendship more; people who were constant and still are constant, who cried with me when I cried and now get to rejoice in my rejoicing. I’m grateful for them all, and want to be there for them too. Each type of relationship is adjusting I think, in different ways, because so much of my life has changed. It’s inevitable, it’s hard to get my head around it all, but it’s good.

The hardest relationships to adjust to though, have been with the people who weren’t there, but now are. The people who disappeared but, for one reason or another, are now back in my life. It’s honestly really difficult to know what to do.

I’m in two minds about about writing about this bit, because it might be seen as condemning or judging. But in the end I’m saying this, not to condemn people, please don’t take it in a spirit of condemnation, but because I want to be honest about all these things I’m feeling and facing. Because if I’m feeling it, someone else might be too, and they might need to hear that they aren’t alone, and these feelings are valid.

I’ve had people look me in the eye and tell me straight out that they knew I was terribly ill and are glad I’m better… no apology for abandoning me, for the broken promises and the empty words they often gave me, just happiness that I’m better now. How do you deal with that?

Most people though don’t comment. They’re pleased I’m better, they don’t mention how they acted when I wasn’t. A few people seemed a bit awkward, but nothing was said. These ones are difficult to deal with, too.

Part of me sometimes wants to scream, don’t you know what you put me through? Another part of me wants to run away, change church, change city, never face them again. Part of me wants to tell them. Part of me wants to pretend it doesn’t happen, so there’s no conflict.

The part of me I’m listening to, though, says this: What they did to you, is nothing, nothing, compared to what you did to God. And did he condemn you? Did he send you away? When you deliberately hurt him over and over for no reason other than your own selfishness, did he rage at you or run away or refuse to associate with you? No. He knew it was wrong, and put the punishment on himself. He said it was wrong and forgave you anyway. How much more should you forgive these people who he is also willing to forgive?

Moreover, he who saved you from death and then saved you from being bedbound for the rest of your life on top of that, loves these people, really really loves them, and wants you to love them too. He commanded you to love them, in fact. He didn’t say they wouldn’t hurt you, and if they do then that’s their problem; your problem is to love them, and treat them with grace.

You gave up any rights to hold grudges or to condemn when you accepted God’s gift to not hold grudges against you or condemn you – and isn’t that more than a fair trade? Isn’t that super brilliant in your favour, even if it’s hard?

Yes, it is.

So my plan is grace. My “dealing with it”, is grace. It’s hard, of course it’s hard, but it’s the absolute best thing I can be doing. I’m not even sure how I’m doing it – it’s probably all God. I’m not saying I will tolerate evil or accept the status quo as okay – I absolutely won’t, because that is in no way love, but neither is condemning people for what they’ve already done and refusing to forgive. I want to change things, not dwell on the past; I want to treat people with the same grace I received, and move forward so that maybe next time, we’ll do better.

So that brings me to the third group of people – the smallest and the best – the ones who come up to me and say “I’m sorry”. The ones who say they knew I was hurting, and they knew they did nothing, and they know it’s not okay. The ones who take that step to repair the relationship themselves.

And the way I deal with that is generally by crying a bit, and hugging them, and telling them they made my day.

Adjusting my mind

I ‘ve spent a good couple of months trying to get my head around what normality is, now.

First, there was the sudden jump to being able to do things. Now, I want to be clear here – the barrier to me doing things was physical capability, nothing to do with what I thought I could do. In fact, I was constantly doing far more than I was physically capable of, hence all the crashing; I was always pushing it. But the best solution to, if not recovery then stability, is to not overdo it, so I’d been steadily trying to pace myself. Suddenly having that taken away… well, it was amazingly freeing, and at the same time just bizarre. It still feels bizarre. I suppose the best analogy I can think of is that prisoners might have the same reaction, having been locked up for so long and then suddenly able to walk free?

In any case, I had to fight with myself not to freak out when I had something to do every day of the week. I’m busy in the morning, and I need to do something in the afternoon, I can actually do both. Yes, I need time for rest, and adequate sleep, but not to the extent of not being able to schedule more than one thing a day. And boy, is that scary.

Just the number of hours in the day is something strange to me too… Around the time I got better, my general day schedule had me getting up around 3 or 4pm, and going to bed at around 11 or 12pm. That works out at about 8 hours of ‘up time’, in which I could manage a couple of light things like browsing the internet or watching a DVD, or a short amount of something ‘strenuous’ like crochet if I was especially well. The exact times and activities varied from day to day, but that’s generally what it came down to: 8 hours, one activity a day.

Suddenly, I can get up at 8am and go to bed at 11pm, no problem. That’s almost doubled the amount of time I have, not to mention how much more capable I am during those hours. Yet, I still thought of my day as that 8 hour block, and it’s really hard to get used to having more time than that. I feel physically, after around 8 hours, like that’s my day done – even though I’m not tired – which has resulted in things like coming home from work at 5pm and feeling like I’ve used the whole day up. Whole day? I’ve another 5 or 6 hours, that’s practically a whole other day still to go!

I’ve resorted to counting, physically, how many hours I have left before bed time, since I can’t trust that sense of time right now.

In fact, working out how to fill that time has been kinda strange too. What do I want to do? I feel like I have no time, but I have loads so I don’t plan for it and then end up thinking what do I do now? I don’t want to plan things in the evening because they take up a whole evening… but they really don’t, when it comes down to it!

Then there’s dealing with normal fatigue, normal illness. Is this a relapse? Am I getting worse? Or is this just something people just deal with anyway? I have no notion of what ‘normal’ is, any more – but fortunately quite a few people who I can double check with.

A strange juxtaposition assaulted me, too: The thought of the endless days of nothingness stretching into the future was one of the more terrifying things about being ill, but now that has been mirrored with the endless days of having to do things. I jumped between “I have nothing to do, how do I cope?!” and “I have too much to do, how do I cope?!”. I think it was a general fear of the future, thousands (hopefully) of unknown and unexpected happenings weighing down on my shoulders, and I have to deal with all of it. It felt too much to bear, all those days. It still does if I focus on them… but that’s not how we live. We don’t deal with a lifetime in one second, we take it day by day, and forcing my mind to focus just on today has been a great struggle. I’m sure I dealt with it fine before, but then before, I thought I knew the future (for some reason), even vaguely.

And lastly, twinned with that, is the great unknown of what do I do now? I still don’t know, but prayerfully dealing with it a day at a time seems the way forward for that, too. By that I don’t mean not thinking about the future, I mean accepting that all I can effect is what I’m doing right now, and just dealing with that. If I need to plan or prepare for tomorrow, or next week, or next year, then I will – but I can’t afford to worry about it. There’s far too much to potentially worry about in my life for me to do all that worrying in this second! Or, ever!

Adjusting is hard

I always set out to be honest about what it is to deal with chronic illness, and I guess being honest about this too is just as important: adjusting is hard. Even adjusting to something good.

Just to get this straight right now, I wouldn’t go back, good grief would I never go back. I am so joyful that I’m not stuck in that bed any more that I could cry, even now, months later. It is so good, but it’s hard, and hard to get used to. Somehow I didn’t expect that, but I suppose that I should have. But believe me when I say that whatever losses or hardships I’m talking about here are well worth the trade… yet that doesn’t stop them being losses or hardships. So, that’s what I wanted to talk about, really, when I set out to talk about adjusting. Because it’s the very thing people don’t talk about.

There are things I miss – the silence and space for contemplation, not having so much responsibility or a schedule to adhere to, sleeping with double bed to myself. I haven’t written very much because I haven’t had so much time to think – although I am undeniably grateful that I have so much activity to occupy my time. It was hard to get used to the endless days of nothingness, I thought I hadn’t, but it’s similarly hard to get used to that nothingness taken away in one sweep!

There are things I have lost – a sense of belonging quite so firmly to the community I was in, some sort of identity, even if it’s not an identity I want. I feel in some way like I’m betraying all the people I have met who are still so terribly ill. Betraying them because I’m better, and they aren’t; because I’m better and I still don’t have a magic wand to wave to make everything better. Betraying them because when I was so sick, I thought if I had more energy I could do so much more, but now I have more energy I realise I can’t – not now anyway – because so much of it goes on staying alive. I have to work, and look after myself and my family, and after all that there’s probably less time and energy left than I had before… right now anyway, whilst I’m adjusting. It seems a terrible irony. I know that there’s nothing I could do differently, nothing more I can add right now other than those small things I wrote of yesterday, but I still feel like I’m betraying you all. I know if everyone did that, it would be more than enough, but they don’t, and it isn’t, and I wish it was. I’m sorry.

I wonder, is this how my husband felt all that time? Knowing he couldn’t do enough?

Adjusting is good

Being well is good.

Today I was running in the snow as it fell, laughing, because I never thought I would ever be able to do that again. So many things that I thought I would never be able to do again, and it feels amazing when I realise. It still brings tears to my eyes. At first it was everything; answering the door, making a cup of tea, going for a walk, having a shower – I get more used to it all but there are still moments, even with things I do every day now.

Since I’ve been feeling better, the vast number of people who have come up to me and said something along the lines of “wow, I just saw you and knew straight away how much better you were because you look so much healthier!” is astounding. One of the top comments you get with invisible illness is “but you don’t look sick”… well, apparently you do. I don’t know if it’s people trying to delude themselves or be polite, but I suspect that it may be down to a lack of comparison to how you would look if you were well. 

What else is different? I can think of ideas for the future with the hopefulness of knowing they are possible. That’s pretty amazing. Yet more than ever I realise how I have so little control over what happens. There’s some kind of peace in accepting that, a different peace to knowing the future but peace none the less.

Life feels normal so much of the time, whatever normal is, but there are moments like that, running in the snowfall, when I remember, and I realise I will never, ever stop being ridiculously grateful for what I have. I suspect the moments will grow fewer and further between, the experience fainter with time, but it won’t ever disappear – more than that, I hope and pray it doesn’t. If I ever wake one day thinking that I deserve this, when I know all too well who I am, and how many people will never have health, please give me a good slap.

Anyway, I’ve not been writing because I’ve been doing, and for me writing requires a lot of space to think. I’ve been earning money, and reading books, and cooking, and talking to people, and praying, and all sorts of good things that I missed. I’ve been struggling with myself just as I struggled before, and enjoying being able to spend time with my husband. My absolute favourite thing has been the delight on people’s faces when they’ve seen how much better I am. Everything has been so new and exciting, and yet so… normal.

There’s a strange juxtaposition here – I do feel so normal, so natural, like nothing ever changed; yet at the same time I am aware of how much really has changed, how I can never go back to how things were before. Even if I returned to the same place and position I was in before, it would not be the same. I know the risks, that I might not be fully better, that overstepping it could be disastrous; but it’s more than that, much more. I know how every moment people are seriously suffering, in so many ways, in ways I’ve suffered myself, and I feel powerless to do anything. I wish I had answers and solutions, or big things I could do that would change things, but all I can do is keep pottering on with whatever small thing I have before me – a word here, a help there – hoping and praying that God will answer the cries in a way I can’t. And I know how blessed I am, unbelievably blessed, to be able to run in the snow again.

Coping: what’s really important? (NHBPM 7)

Part one, “Coping“; part two: “Who am I now?

The things that are really important don’t change, just because we got sick. In fact, dealing with a chronic illness is often what forces us to evaluate what is important, and focus on that. As a result of having such a limited energy supply, I have had to think carefully about what really matters to me, and assign energy to it accordingly. And, despite how much I truly hate the restrictions imposed on me by my body, I have learned a lot about what really matters.

I have much to say on this, but not much ability left in my mind to say it. I have prioritised spending time with a friend over writing a deeper blog post, because relationships are important. So I shall merely point out some of the many things which are important – and you will hopefully see for yourself that illness, while perhaps affecting our ability to embrace these things, cannot remove them all entirely: Love for our family, our friends, our pets, people and whatever else; finding peace; growing our character; developing the various relationships we have; appreciating beauty, taking joy in the small things; meditating upon what is good.

I will expound upon this one example: As a Christian, my character is immensely important – and being ill has not changed that. The “fruit of the Spirit” (love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control) are just as develop-able now as they ever were (or, conversely, just as hard to produce!). There are  other aspects to character too, of course; honesty, focus, how we spend our time, and more besides. Nothing about my illness has excluded me from this important thing, nor should it, although it has changed how I relate to it. In fact, I realised that the energy I poured into my relationship with God was not in proportion to how important it was.

That energy-importance relationship stands for other things too. Food is more important than getting dressed. Spending time with people is more important than tidying up. There are countless things which I used to do that I don’t have the energy for any more, but in relation to the things I use my energy for – they don’t matter. I hope one day I can do them, but until then I will stick with what is more important. That is why realising what is important is about coping – because we can cope without the unimportant; whereas the important is the reason for us to cope!