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.

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Comfort

I find a lot of the time, especially when I was really ill but even now, that people felt guilty telling me of hardships. Small things especially, like suffering with a cold or a bad nights sleep, but often they aren’t mentioned at all or if they are, it is with a “oh, but it’s nothing compared to what you have been through, I shouldn’t even mention it”.

Actually, I probably do the same myself. There is the tendency to think that because someone suffers greatly, they will be insulted if we seek comfort in our smaller sufferings. Sometimes they are. Or, to think that they would consider the small suffering to not be suffering at all, because the gap between them is so huge.

The way I see it is this though: any suffering or hardship, is suffering or hardship. It is beyond the point of not-suffering, and so unpleasant, no matter the comparison to anything else. If comparison was the only legitimiser to needing comfort, I doubt anybody would be worthy of it, because there always seems someone who is worse off in some way.

I found that, on the contrary to what people thought, I wanted to comfort people more when I was suffering, because I appreciated the comfort so much myself. Comforting someone is in itself a thing that makes you feel good, even the comforter. It brings people together, and part of me chaffed at being denied that when people would not share any hardships with me because of my own situation. I felt most of all, that I was more able to sympathise or empathise, more able to offer the silent comfort of listening, because I understood so much of what suffering was. Especially in things that seem shadows of what I went through – tiredness, pain, injustice, and whatever else – I know how awful they can be to go through, in a way those without encountering suffering could.

I think Biblically that this is the way to go, too. I came across this yesterday, from 2 Corinthians 1:
Praise the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort. He comforts us in all our affliction, so that we may be able to comfort those who are in any kind of affliction, through the comfort we ourselves receive from God.  For as the sufferings of Christ overflow to us, so through Christ our comfort also overflows.  If we are afflicted, it is for your comfort and salvation. If we are comforted, it is for your comfort, which is experienced in your endurance of the same sufferings that we suffer.  And our hope for you is firm, because we know that as you share in the sufferings, so you will share in the comfort.”

It reminded me of my thoughts on this matter; that actually it is through suffering ourselves that we are able to really come alongside others in suffering, and that it makes you want to do just that. I don’t deny that there are people who really do get upset by others mentioning their own sufferings, indeed that there are times in which it isn’t a great idea to bring up minor things in the face of major, but I think that this is the right response to suffering – to reach out and comfort others. Not always easy, or painless, but right.

Recap (NHBPM 30)

So, it’s the end of NHBPM, which is frankly a huge relief. I enjoyed the challenge of having to write so many posts, and some of the prompts were very good, but it was hard going. I had to give up a lot of stuff, primarily time which I would have spent on social activity but also a few more “challenging” mental things like the amount of TV I watched, in order to manage the posts I did manage, and I still had to shift a couple of times. Writing posts ahead is quite good but apparently still fries my brain; every-other-day worked a little better, but still probably a bit much. As I think I said, I want to raise awareness of how ME affects you, and this is how: not enough energy for crazy schemes like this!

nhbpm_daycount-30

I enjoyed it though, and it gave me an opportunity to practice writing and learn a bit more about my limitations.

What else has been going on this month? Well, I had my follow-up appointment with the neurologist, which went well. She clearly knows her stuff, and I am very happy that she is not content to just dismiss everything as “chronic fatigue”- she really wants to find out what’s wrong, and then try to fix it. I have seen a lot of the bad side of the medical professions, so it’s both refreshing and a good reminder that there really are doctors out there who are in it to help us. It’s still hard to shake the constant fear that she will turn around and go “a-HA! It was all a trick! I don’t really believe you’re ill at all!”, dealing with all this has not given me great confidence in doctors actually listening to me or believing what I say.

Most of the tests came back negative, but she is still waiting on the EMG results and has referred me to a muscle specialist. I think that the current ideas are ME or migraines plus some as-yet-unidentified muscle condition. Either of those could explain the symptom set, so we’ll wait and see what shows up! I’m pleased there are still options which might be treatable.

This morning our tumble drier arrived, which I am immensely excited about! The horrendous pile of washing had been attacked lovingly by my mother in law, but now we have the ability to put a stop to it once and for all, and actually sort out the wardrobe – hurrah! Not so sure about admitting that a tumble drier is an exciting development… I already feel like I’m 23 going on 80, oops.

We have also had a couple more mysterious donations, for which we are so thankful. I am repeatedly amazed that all the things we have needed have been given to us, and although I guess I should not be at all surprised that God can an does provide for us and keeps his promises, it is still a “wow” moment, every time – the small things and the big things both. What you only seem to read about in missionary books, has right now been happening for us. Every time there is a set back or a door slammed in my face, it has been so easy to despair even of life, but we have not stopped trusting that God is the “living one who sees [us]”(Gen 16), and he has seen us and helped us. It’s not the path we would have chosen to go down, but we are here anyway, and it is clear that whilst it is hard, we have not been abandoned for a moment. Thank you for looking after us, and hearing our prayers, and getting us through this. I suppose that soon enough I’ll be equipped to write some detailed post on providence, but for today, it is clear that “all things work together for the good of those who love God”(Rom 8).

Coping: Hope (NHBPM 9)

This follows on from”Coping“, “Who am I now?“, “What’s really important” & “Acceptance“.

“Surely if you have accepted a situation, you have ceased hoping?” – often, this is the unspoken question which causes people to hold on to denial about their situation. Are acceptance and hope really opposites though? I think that actually, it is only through acceptance that you can truly find hope.

When I say “hope”, I say it in the Biblical sense of the word, the sense of believing in something that can and will happen; not idle wishes. Something that can truly be held on to. Idle wishes may be fun, but we can’t place our trust in them and rely on them as a source of comfort. Hope however, is looking forward to that which we may not have, but know we can one day attain.

I think there are two things to hope in that are important, for those suffering. The first is this – hope that these hard times will pass. For those with a chronic illness, this could mean many things: the most obvious is hope of full recovery. But, I do not mean that to be the only hope one could have of things getting better – we know that most people with chronic illness don’t recover!

What else than, can we hope in, for things getting better? For those with a stable illness, there is the hope that we learn to manage it better, that the medications we are starting on can make life a bit easier, that getting care will enable us to do many things we can’t on our own.

Lastly, there is the hope that some of us have in a better life beyond death; in the end of suffering and pain. We know that illness will pass away, and end, and that it will not always be this way. For those who’s illness continues to progress, this is perhaps the only hope of improvement left. I don’t mean to say this in a “give up and die” sense, not at all – but in a “keep on going; one day it will be better”. Christians may feel wrong in hoping in death, but even Paul says that he wants to depart from the present suffering to be with God (Phil 1:21-24). We are encouraged in the Bible to hope for Christ’s return, and to hope in new life – it is not a sin to look forward to these things.

Life is also about more than improvement, and that brings me to the other thing to hope in – the hope of good things now. Even in suffering, there are good things, and focusing on them, being thankful for them, enriches our lives even in the midst of suffering. I am not saying to ignore bad things and “think positive”, but to acknowledge both the good and bad, and be thankful for the things that make our lives more enjoyable.

I have hope that going through illness will shape me into being a better person – even if the illness does not come to an end, there are good things from it. I have hope that what I write might encourage or teach others, even if I write it from a place of pain. I have hope that I will enjoy time with my friends. I have hope in my relationship with my husband, which brings great happiness to me, and hope in watching my kitten grow and play.

No matter how dark it is, there is always something bright to hold on to (although we might have to be inventive about it). It makes suffering more bearable, and coping become possible. Losing hope is what causes us to give up – living with it can keep us going, and what’s more, enable us to find happiness in the midst of calamity.