M.E. – Relapses and mountain climbing

Mountain climbing

Photo credit: Ali Wade

M.E. is a relapsing-remitting illness, much like M.S.  This means that there are times when the body suddenly ‘crashes’, with a worsening of symptoms and an increase of disability. This is a relapse.  Remission for me is not like cancer remission, where there are no symptoms at all.  Rather it means that the symptoms are not worsening; they may be gradually improving or they may just be stable.

 

I had glandular fever (mononucleosis, from the Epstein-Barr virus) in 1997 which completely wiped me out for 2 months, and then went into ‘remission’. I felt like my normal self again, but every time I got a cold or minor virus I would feel exactly the same as I did with glandular fever, and it would take me much longer to recover from it. My first M.E. relapse came in 2005, though I didn’t realise at the time that is what it was. One day I woke up and just couldn’t get my brain to focus on anything. I had a month of feeling very ‘out of it’ and exhausted.  After that, I started feeling better, but was not able to function exactly the same as before; I would tire more quickly, was only able to work part-time and was falling asleep in the day. Then in 2007 I had another major relapse; this time my mobility was seriously affected and from then on I couldn’t walk more than 600 metres per day.  I became a wheelchair user.  In 2008 I had got a little worse and could only walk 400 metres per day.

 

In early 2010 another relapse; this time it left me unable to  walk more than 200 metres per day. Then in mid 2010 I gave birth. The physical exertion of labour, though relatively short, triggered another relapse, this time rendering me initially bedbound, and then largely housebound. I had a few months of improvement, then in early 2011 I relapsed again.  My mobility is significantly limited: not only can I not walk outside of the house, but even inside I can’t walk around freely. I can only use the stairs once a day; any more than that is too much effort and would risk deterioration or another major relapse. I can sit up for a limited time each day, and I can have about 2 hours or so of social or ‘brain’ activity per day (blogging, for example).

 

In between these relapses, there is a long, painstakingly slow effort to improve. This means having to very strictly stick to my energy limitations, making sure I don’t exceed them each day and then gradually, gradually, when I haven’t experienced ‘warning symptoms’, I can push the margins a bit, and extend the time I spend chatting to people, spend slightly less time each day lying in bed, slightly more time sitting up.

 

These are the clinical ‘facts’ of the pattern of the illness for me. But how does it feel to go through this?
the argentiere glacier

In a period of remission, it feels like climbing a mountain. Not the kind of ‘Lake District’, nice-day-for-a-walk-mountain, but proper Arctic explorer type mountain. Or a glacier, even, where the ice makes the ascent that extra bit challenging and hazardous. It’s inching along, clinging onto rock and ice, sheer effort. It’s hard work and unrelenting, but every now and again you can look back and see you’ve made some progress, and you’re a little higher than you were before. It gets a little easier, you can go slightly faster. You look back and see, ‘hey now, I can walk 10 metres per day further than I could 3 months ago!’

 

A relapse is like losing your grip and falling off the glacier. One minute you’re carrying on as normal, the next minute you try to take a step and feel the ground slipping from underneath you.

 

You get that sickening feeling in your stomach – a mixture of dread and denial, and then comes the frenzied scrabbling to desperately regain your grip. All futile.

 

Then gravity takes you and you fall, and it feels like an endlessness of falling, not knowing when you’re going to land or how bad the damage is going to be when you get there. I think that feeling of terror and the unknown is the worst part. That’s how it felt after I had just given birth and I could no longer stand up or get out of bed by myself.  It’s the feeling of, ‘is this it now, is this my new nightmare, or am I still falling? is there still worse to come?’  I had this feeling in 2011 when day after day I would experience more symptoms, and would find myself able to do less and less.  It’s the panic of finding it harder to walk and wondering, ‘will I now be unable to walk at all?’

 

Then there’s the feeling of getting up, and coming to terms with where you are after the fall.  The deep, deep disappointment of those small, hard-won improvements, all for nothing. The feeling that you were tricked into complacency, and something has been snatched from you. And the fear of having to do life at this new level of disability; looking up and seeing the place where you last were, now looking so utterly unattainable. Not wanting to keep going at this new level, and knowing you have to.

Replaying and replaying over in your mind what happened just before you lost your grip, ‘did I have warning? Was it because I wasn’t resting enough? Was it because I spent too long chatting?’, all the while knowing how pointless it is because you can never really know and never really prevent it.

 

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I am currently in a place where I feel like I’m finally making some progress, the inching is less slow, I feel more in a rhythm, I can see improvement. Last year, I was in ‘free-fall’ for 2 months, before eventually landing in a place of disability so severe that I just couldn’t conceive of how I would be able to look after my baby at all. It was, frankly, terrifying.

 

I don’t have that same sense of fear now, more like denial that it will happen again. I don’t believe it will happen, because I can’t believe it will happen, because I can’t imagine how I would cope. Each time I relapse I think there’s no way that I can do life like this, and that it can’t be done. And then, of course, you adapt, you surrender, you compromise, you give up on seeing life a certain way. Part of me thinks I ought really to have got more used to illness, more accepting. But it still feels wrong.

 

I want to say something helpful or encouraging about the aftermath, with the benefit of hindsight. I’m not sure if I can. For the moment, I just want to be honest about that raw fear.

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20 Responses to M.E. – Relapses and mountain climbing

  1. Genevieve @ Turquoise Gates 16th March, 2012 at 3:40 pm #

    I think there are things that are too big for us to cope with in the moment. I lean hard on verses like “Cast all your cares upon Him, for He careth for you.” (I Peter 5:7) and “Sufficient unto each day are the trials thereof.” (Matthew 6:34) I had cancer for 4 years, and I had to declare one day a week “cancer day” – the day I would do research, think about and process how I was feeling, etc. I simply couldn’t think about it every waking moment. Coping like this allowed me to be “in denial” the rest of the week, and come back to reality in small doses. Now I am in remission, and I find I have to push cancer out almost forcefully from my thoughts. What will I do when it recurs (they’ve told me it will)? I have to live like I’m not dying in order to live like I AM dying – bravely, wholly, diving into life with my entire being. I appreciate your thoughts here and you have my prayers! We don’t choose our mountains, do we?

    • Tanya 17th March, 2012 at 11:44 am #

      Thank you so much for these thoughtful comments. You speak as someone who has felt and thought deeply about these things – and looking at your blog, I can see why! Thanks so much for sharing; it is really helpful to glean things from others who have walked along similarly uncertain paths. You are an awesome lady – thanks for stopping by.

  2. Emma 14th March, 2012 at 8:12 pm #

    Tanya – this is such a helpful post, because it is so honest. Praying for you in the midst of the struggles.

    • Tanya 16th March, 2012 at 12:33 pm #

      Thanks Emma – that means a lot.

  3. Fiona 12th March, 2012 at 7:33 pm #

    Hi Tanya,

    You won’t remember me but we were at university together – our mutual friends are Catherine Straker (who I think was in the same building as Jon at Hild/Bede) and Alice Buckley (of Play on the Word – I know her from CYFA camp), and I happened upon your blog via Kath Cunningham, who is a friend of a friend! I just wanted to say I think your blog’s fantastic and I’ve so much enjoyed reading what you’ve written. Your attitude and faith is inspirational. Sending love and prayers xxx

    • Tanya 14th March, 2012 at 10:45 am #

      Hi there! thanks so much for commenting. Small world, eh? How cool that we both went to the best university in the world!

      Thanks very much for the encouragement – it feels entirely undeserved, as I am not convinced my attitude is always what it should be! – but no less nice for that. 🙂

  4. Vicky 11th March, 2012 at 2:04 pm #

    Hi Tanya,
    I’ve just read this and thought what a useful analogy mountain climbing is to describe living with M.E. and relapses. I too have had a very up and down pattern to my illness, with external factors that I can do nothing about, coming along and setting another relapse in motion and I know exactly how you feel. That fear, which you describe so well, is paralysing and scary. There is always the thought for me of whether this time it is permanent and I have to try remind myself over and over and over of Luke 12:22-31. I only have to get through today, I tell myself, but ‘today’ can feel like a mountain in itself!
    It will get better-bit by tiny little bit. Hold on to that if you can and keep rigidly to those limits (says someone who must be an expert in overdoing it on good days!)-but I’m trying to be more disciplined!
    How do you cope with the isolation from church? Vicky.

    • Tanya 14th March, 2012 at 10:43 am #

      Thanks, Vicky! I’m so glad the analogy spoke to your experience too. Luke 12:22-32 seems like a very wise passage to hold onto – I have trouble doing that!

      How do I cope with the isolation from church? With varying degrees of success! I have a lot of support from my husband, and I make a conscious effort to talk about spiritual things whenever I see Christian friends. Bible reading, prayer, Christian books all helpful, if I have the brain energy for it. How about you – are you well enough to go to church?

  5. Polly 8th March, 2012 at 7:19 pm #

    Hi Tanya,

    Nice to read your blog. I am in a very similar situation to you. I have had ME for 12 years and was much better until recently when I had my baby and now I have relapsed in a major way and unable to return to my part time job. It is terribly frustrating and only with the help of my husband and parents has it been possible for me to look after my baby at home and not send her to childcare. It is devestating and such a robbing illness. I coped with resting for months/ years the first time but I just can’t do it now as every day is so important as your baby grows up- they wont put growing up on hold until you are better. I think this forcing myself to do as much as possible probably will not make my recouperation as quick as it could be. God bless you and your recovery x

    • Tanya 9th March, 2012 at 2:02 pm #

      Hi there – great to hear of someone else in the same situation! Sorry to hear that you have relapsed so badly, though it’s good that your husband and parents are so supportive. I definitely know what you mean about it being a ‘robbing illness’. I hope that you are able to strike a good balance for you between caring for your baby and caring for yourself. Blessings. x

  6. Margaret Harding 8th March, 2012 at 9:33 am #

    Tanya, just read your blog. Can’t believe you are having to endure such a debilitating, frightening illness. I found your writing very moving but also enlightening. Thank you for being honest. It helps those of us who are lucky enough not to suffer from ME. God bless you. x

    • Tanya 9th March, 2012 at 2:00 pm #

      Thank you for your kindness! I really appreciate that you took the time to read and comment. (Lovely to ‘see’ you on here!) xx

  7. Anna Wood 7th March, 2012 at 6:32 pm #

    Have you just reached inside my brain and taken all my thoughts for this blog??? Ahh, you put it so well. A relapse doesn’t just happen overnight- that feeling of freefall is so awful, as you say, never knowing where you are going to end up;. That feeling that life isn’t really worth living if this is how it is going to be, that feeling of, how do I summon up the energy to have the hope, that I need to keep going, the hope to believe that it won’t always be like this?

    I am glad to hear you are stable – that you can look back and see progress. I’ve also been a bit better recently – back to where I was before Christmas, before my latest relapse. Life is that bit easier – I don’t have to continually think about how I’m going to do the simplist things – I know I can cook a meal most days, even if it is just burgers in the oven, I know I can push a little when I need to go out, without severe symptoms. I can enjoy life a bit more, feeling just that little bit less ill, and most importantly of all, I have hope, hope that I will be able to take the next step forward, maybe sometime soon.

    • Tanya 7th March, 2012 at 8:06 pm #

      Thank you! I also think you put it rather well in that comment – those are the things I think and say. I really relate to the ‘having to think about things’. For me, the last few months it has been really nice not to have to think, ‘I’ve walked across the room once – that means I can’t do that again now, so how am I going to reach the stuff on the other side?’ It’s so freeing to just be able to walk across the room!

      Glad that you are emotionally strong enough to hope too – that is a good sign…

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