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!


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.

Why I write about my health (NHBPM 1)

I didn’t originally intend to pick this topic for day one – I actually wrote a short piece on the internet and how wonderful it is for housebound people. I kind of think that “why I write about my health” is a clichéd way to start… but my husband pointed out that it’s actually really important. I am doing this for a reason, not just to pass the time. So – my pro-internet piece has been scrubbed and replaced with this! Much thanks to him for his proof-reading and  idea-giving efforts; I am much too exhausted to produce this kind of thing without support right now.

Although at first, I just wanted a place to share my ideas and experiences, it becomes very clear after spending any amount of time in the world of ME that there are serious issues involved. There is a lot of ignorance about ME, both in the general population and amongst healthcare providers. The former is perhaps understandable, the latter utterly unacceptable. A result of this is that even amongst patients and carers, there is much confusion. So, part of why I write is to explain things, from the basic knowledge that the general public should know, to new research or interesting studies.

On the human side of things, I want to share my own experiences to show how it is for someone to live with this disease, so that the appalling suffering behind the closed doors and blacked out windows of thousands of homes in our country, millions across the world, is made plain. On the scientific side, I want to share research and make the difficult and inscrutable, understandable to the everyday person.

In wider issues, disability rights in this country are being taken away by our severe right-wing government. The poor, sick, disabled, old, young or merely unfortunate are demonised and stripped of the little that they have to survive on. Doctors are paid to lie about their patients; those who claim to represent the people, are crushing the people under their feet. I refuse to stand by and let it happen – though it may well happen despite all our efforts.

It is particularly hard for all those with “invisible” illness; the current assumption is that if you can’t see it on the surface, it doesn’t exist. Despite the fact that this is obviously foolish when examined, most people don’t take the time to think about it at all, and happily pass out “scrounger”, “defrauder”, “hypochondriac” and “liar” labels to anyone they like. ME poses it’s own issues here, since the tests which show abnormalities are not routinely available on the NHS.

I want these to change, I want all of it to change, so I tell people about the truth and hope that one day, it overtakes the lies out there already. I realise that the awareness I raise, or the insight I glean, might not make much difference to the world – but I would rather stand up for what is right, despite all my limitations, than stand back and let what is wrong win.

Finally, I write about what doesn’t change with illness – following after Jesus. Physical illness has given me much time to consider what the important things in life really are, and this is one of them – the most important if it has any importance at all. I want to be able to encourage others, and share the musings of my mind. I wish that one day my blog returns to what it originally was, just this topic, and that there will be no need at all for patient advocacy or raising awareness. I write for a better world, but I know, like anyone who has seen even a glimpse of the evil and corruption endemic in our culture, that I will probably never see it. Not in this life.

An introspection II

I am determined, first and foremost, to live. Just because I have orthostatic intolerance doesn’t mean I’m going to lay down and die – I can lay down and form a new life.

But it really is forming a new life.

The things I used to do aren’t available to me anymore. Before, if I was ill I would read loads of stuff. Now my brain can’t cope with that. Instead I’ve taken up watching stuff, DVDs and internet TV. It’s totally alien to me as a hobby, but it’s something I can usually manage alright, especially if it’s mindless and doesn’t actually require much attention. So, reading out – watching (and listening) in.

I used to socialise with people face to face, but turns out people aren’t so interested in seeing you when you’re disabled and housebound. So now, most of the people I talk to I’m talking to online. I’m kinda used to that from growing up in this new age of technology, but what I’m not used to is never seeing anybody in real life as well. I don’t encounter people randomly on the street, or exchange greetings with shop workers, or sit down by myself while the world walks and talks around me. I’m on my own most of the time. It’s hard to adjust to.

I used to do everything myself. Making food from scratch, making clothes, DIY. I love the idea of self-sufficiency, and hate spending money on things I can do myself. Sadly, I now have very little I can do myself, so meals etc. are significantly more expensive, and new clothes are currently out of the picture. But I can manage a little bit of crochet or knitting, maybe a little sewing. Not super exciting, but not super strenuous if I stick to short stints.

Basically, all my old hobbies required energy, and I need to find new things that don’t. Things that don’t require going out, or moving much, or thinking much. But there are things like that, and I’m not going to do nothing just because my initial loves have been taken away from me.

Oh, I’m still trying to game. But in small doses, and only games I could play in my sleep (for obvious reasons).

That’s just a glimpse of hobbies though, to show how everything has to change. A year ago, I was into totally different things, and I had totally different ideas on how to spend my time. It’s somehow like I’m a different person, but still the same person. It’s strange.

Hobbies are one thing, but what do I do with my life? Well, here’s where it doesn’t seem to change so much. I mean, I loved my job and education, I really did, but they were never the point of my life. The point is to love God and to trust God and to do His will, right? He knew that this would happen to me when he chose me, it wasn’t a surprise to Him. Whatever His plans are for me, they catered for this. So the whole goal and purpose of my life is the same – yay! Except that, I still need to work out what to do.

Part of what to do, is to work out who to become. To try to become closer to God and do His will. To read the Bible and apply it to my life. And part of it, is to work out all the changes. The hobbies, the activities; work out what I can do now that will glorify God. I’m praying a lot more, for a start – somehow it’s easier to pray when you’re not capable of much, so I think I have an advantage there.

I’m not sure what else to do, to be honest; but I’m thinking about it. I’m trying to adapt to the new world that I live in, and become more of the person I was meant to be. I still have the same struggles that I always had, and the same struggles that everyone else has; loving, forgiving, learning; but I now have all these new struggles like corrupt government organisations lying about me so they don’t have to help me (wow, sounds pretty James Bond when you put it that way), and trying to work around a brain that won’t function and get about with a body that’s the same. How do I socialise when I’m isolated? How can I get a healthy diet when I can’t cook? Life is still… interesting.

Then there’s other things I’ve had to give up, things that are more precious than hobbies. It’s hard to turn your back on the career you wanted and were training to get. I loved what I did, I really loved it, and the knowledge that I might never go back is heartbreaking. I guess I have to stop looking back, right? I’ve had to give up my fun ideas of learning martial arts, riding a motorbike, joining a band… the cool stuff I wanted to do, but didn’t have time for, and now might never make. I might have to give up the hope of ever having ‘real’ friends, close by – I’ve not given up quite yet, but I know that it might not be an option for me.

The hardest thing right now, is giving up the hope of ever having a family. Jephthah’s daughter took two months in mourning over the children she would never have, but I think it might take me a lot longer. I don’t mean that it’s an impossibility – miracles and treatments may one day abound – but I can’t hold onto it as some beacon in the distance. Right now, all evidence is that I will never be able to raise children. I can hope, idly, but it’s not a real hope, not a hope I can hold onto. If I grasp onto something foolish I’ll make myself a fool.

If I live for the possibility that one day I’ll get better, I will never live until that day comes. If I accept the way things are, I can live despite it all – and maybe one day, things won’t be that way.

I’m going to find what God wants me to do. I’m going to trust that He has plans for me, good plans, and that the person He’ll make me to be will be worth all the hell I’m going through to get there. I’m going to live, even if it’s horizontally. I’m going to love my enemies and pray for those who hurt me. I’m going to keep fighting against injustice and evil with the only weapons I have, and I’m hoping that I’ll face down these struggles so that people coming after me will have a well-worn path to walk in.

This wasn’t what I wanted, but God will make it better than that.

Idle thought

In heaven, I will be able to run again. Not the stumbly, achey, 8-metres-on-a-good-day shuffle I’m accustomed to – I’ll be able to run. I’ll be able to run as far as I want, outside, through all the perfect and beautiful things God made, and my legs won’t hurt and I won’t collapse after two steps and I won’t stop until I’m laughing too much to keep running. And then, when I do stop, I’ll be able to start again.

There’s a lot of better things to look forward to than that, I know. But right now, that’s what I miss.

More decisions

It is monday, the first day back at uni for the new semester! I had a lecture at 10 this morning but I still can’t make it in, so I guess that’s me. My advisor is treating it as a we’ll-see-how-it-goes situation, in case later on in the semester I suddenly improve (which is sensible). I think however, as I’ve said before, that this is an indication for the next few months.

So… we will see what God has for me :)