This morning I woke up and within minutes I had burst into tears.
Because I had a blocked nose and so I thought that maybe I had the starts of a cold. Yep, a cold. A bit of an over reaction I hear you say … yep.
But the last time I woke up and felt like I might have the starts of a cold, by the end of the day I was in hospital. Because between waking up and ending the day I had an asthma attack. And then it turned out the ‘starts’ of a cold was pneumonia.
Ive been hospitalised again since then. Not that long ago. That was a straight forwards asthma attack, except it wasn’t very straight forward. It never is. I don’t respond to drugs well and usually after hours of struggling to breathe and many drugs I end up at the critical point.
I came out of that hospital stay feeling like it was time to plan my funeral. Which I did.
Yesterday I travelled to the hospital almost 90 minutes away which I visit regularly. And spent the afternoon in what felt like a ‘House’ scenario, where lots of Consultants came in and out (up to 12, I think, but to be honest, we lost count – at one point there were 5 in the room).
My body isn’t working. The symptoms are wide and varied and I could be here all night writing about the various issues, the various blood tests, the various things that have come up, and the fact that as yet no one seems to know what is going on except that I am sick.
This makes treatment pretty hard. And it means for the last 18 months I’ve been on a roller coaster ride of being set on a treatment path, stopped, started on new ones, stopped and so on. Being told one thing, or another, then something else.
Its meant side effects like before last Christmas 2013 my hair started to fall out. It means that if I take medication to help me sleep at night I can’t function properly, or be on the ball enough to work the next day, BUT if I don’t take those tablets I get 90 minutes (if that) of sleep because my body goes into overdrive and I can’t sleep because of crazy reactions or pain.
Its meant days before going away to run the additional needs team/work at a family church conference I had to pull out because I was not well enough. Its meant bailing out of plans on a regular basis, cancelling going to day events, dates with friends, and other things.
Its meant time off work. A lot of time of work, and at the moment its meaning not working. I like to be a busy person. I’ve always worked, and worked hard. And so for the last 18 months/2 years each time I get sick, I go back to work as quickly as possible, as if nothing has happened. Because thats what I do. And because I am already on a low wage, and have no other income.
And also because I haven’t wanted to accept my body cannot keep up. And that it does not function at 100%.
Because accepting its sick is hard.
Accepting my GP told me the other week that I need to start considering this all may be classed as ‘chronic’ and that life will be about ‘managing’ instead of finding that one treatment that would sort it all out.
Accepting its sick and may never be fully healthy again means accepting life has to change. is changing.
And its meant accepting, once again that I don’t understand what is going on. I really don’t. And I would like to. As would my Mum. And my friends. And and and. But we don’t.
Its meant having to think about physical ‘healing’ and how God works, and does not work in that sense. Its meant avoiding conversation with the trigger happy ‘Jesus WILL heal’ you people because I just want to say ‘what if He doesn’t?’ or scream at them, and its meant having those gentle, but painful conversations with friends and tissues, and with people wiser than I am.
The conversations that go ‘Does God heal, Yes, but sometimes He doesn’t. Why?’. The kind of conversation there isn’t any answers to. And thats OK because I prefer the ‘there are no answers’ answers to a load of crap. Important but painful conversations that will have to continue to happen for the foreseeable future.
The other thing its meant, which actually makes me teary eyed just typing out now, is accepting I am not in control.
I am not in control of my body.
I am not in control of what it is doing, not doing, when it is doing it/not doing it.
I am not in control when I can’t breathe. I am not in control when its gone into stupid allergy mode in the middle of the night and my skin is red raw. I am not in control when I am in pain and I can’t stop it.
I am not in control when I end up having to go into hospital. And I am not in control of what they do to me whilst I am there.
I like to be in control. Its important to me. And I know some of you will be reading this going ‘of course, its important to everyone’. It is. I agree.
But having survived things being done to my body over the years in which I had absolutely no control over, over the years, especially the last 8 I work harder than maybe some people do at maintaining some kind of control. I hold it tightly. People don’t always ‘get’ it. But thats ok. Because I manage it. I control it. Pretty well actually. I choose who I let touch/hug me. I choose who can do that without even asking now. I am in control of it.
But when I am sick and in hospital I am not in control.
In fact I am not in control of anything.
I am not in control of yesterday, today, or tomorrow.
I am not in control of the days, months and years to come.
So where does leave me right now?
Well, right now it leaves me clinging on to the One who is in control.
It leaves me clinging on to the God who I know is faithful, and has my life in His hands, even if I don’t know what that means.
It leaves me having to look at the tattoo on my wrist every day and remembering I am clothed with His strength, and dignity and that I can and will laugh at my future days to come. Whatever those future days to come look like.
Because He is control. And has ‘got this’.
I don’t talk about ‘spiritual battle’ often. In fact I’m not sure I ever have. Yet something someone said at the weekend (although I’ve heard it all before, many a times in different contexts and usually switch off) which I actually heard. And it made sense.
I’ve realised over the last few months, in fact more and more so over the last 18 months since re engaging with God that He is in control.
But I’m realising with that comes the ‘enemy’. Who also wants to be in control.
I text a few people Wednesday night before yesterdays appointment – amongst other stuff I wrote I said this
‘… I’m not letting/refusing to let the bastard drag me down totally. I know that God has got it, whatever ‘got it looks like’.
And so tonight, after someone rung me and asked me how I am, I sit here, still with all sorts of emotions, but refusing to let this get the better of me.
And refusing to ‘spit my dummy out’. Which I’ve done a few times in the last few weeks.
Ive decided that on Sunday instead of going in to church late to avoid people, and sitting alone to avoid talking to people, and trying to be shield myself from difficult conversations and instead of sitting and asking God why why why? I will go to church with my head and heart held high.
I will go to church, and choose to worship Him for who He is. And for what He is doing in my life. And for what He has already done. And for what He is going to do, even if I don’t know what that looks like.
I’m not saying I’m not gong to continue asking the questions. Sure I will. I’m not saying I’m not going to cry. Sure I will. I’m not saying I’m never going to ask why? again, sure I will.
But I feel like the battle line is drawn. And for the first time in my life I am giving up control.
I am choosing to choose to let God be in control.
Thank you for your raw and honest writing, Helen – very powerful. Standing with you xxx
Some time has passed – how are you feeling now. I can so relate to your words. Thank you for being vulnerable and sharing! Struggling with the breathing roller coaster myself.
hi there
thank you for taking the time to reply and ask how I am.
I am plodding on – taking it steady. Lots has changed, I have had to leave my job, and still find myself landed in hospital periodically (the week before last because of a chest infection).
Looks like I might be having a medication change again quite soon.
But I try and stay as cheerful as possible!
some days i manage that, and some days are not so easy!!
appreciate your concern 🙂
The ups and downs are physically and emotionally exhausting! I understand! God has taught me so much through my asthma journey especially about depending on and trusting Him – not being afraid. Have you explored natural ways of addressing asthma as well as dealing with the emotional side? Those two pieces have been powerful to me. I know every journey is different. Just curious. I hate that you have been back in the hospital – not my favorite place!