So how is married life treating me?

Eighteen months on from my wedding day I don’t get asked that question quite as much anymore, but it still happens from time to time if I haven’t seen the person for a while.

The answer is always the same – married life is still great, thanks for asking.

I tend to go on to explain that in the run up to the wedding day itself and for the last 18 months Rachel has been largely housebound, unable to work and struggling to live a “normal” life after finally being diagnosed with Chronic Fatigue Syndrome (ME). That invariably and understandably provokes a concerned look and the observation that it can’t have been an easy introduction to married life.

But that leaves me with a bit of a dilemma. This isn’t the first 18 months of being a newly-wed couple that either of us envisaged, but married life is great and I can’t help but count my blessings.

In so many ways Rachel’s illness hasn’t impacted on our life together – all the things that convinced me she was the woman I wanted to share the rest of my life with (which I don’t intend to list here for embarrassed blokey reasons) are still evident every minute of every day.

Yet, obviously, in so many other ways it has changed things radically.

If I’m asked how I cope with my wife’s illness I struggle for an answer. As those who know me well will testify, I tend to be quite a simple bloke with a fairly straight-forward approach to things.

I’m not one to dwell too much on stuff. So I don’t “cope”, I simply get on with what I believe I have to do.

That is why I have struggled to write anything on CFS and how it impacts on Rachel, myself and our life.

If anything Rachel’s illness has reinforced my long-held belief that life is far too short and unpredictable to get bogged down on the trivialities and incidentals – although I’m not sure I classify her illness as either of these, there is a part of me that regards it simply as stuff to deal with.

There is a big world out there to explore so let’s get stuck in and see what we can find.

Admittedly our world has shrunk quite considerably, but that doesn’t mean you stop exploring what it has to offer. Having travelled together a fair bit prior to Rachel’s illness, these days we tend to restrict ourselves to the familiar surroundings of home (either our own, our families or closest friends). If we do venture farther afield a fair bit of planning goes in beforehand to ensure we get there at our own speed and Rachel isn’t left wasting days recovering from the journey.

But, again, I don’t tend to dwell on such things.

The only time I’ve sat down and seriously looked at what life for us, me and Rachel has meant over the last 18 months was in writing a letter of support for my wife’s DLA application (which we’re still waiting to hear about).

So, perhaps, the best way to describe what married life means is to include an extract of that letter:

“…I have adapted my own working arrangements to ensure I am home as often as possible. I am now self-employed and have reached an agreement with various clients that I can work from home wherever possible as this allows me to provide regular care for Rachel.

If she is well enough to go outside I, or someone else, has to accompany her as she is at risk of stumbling or falling and due to the impact of her CFS Rachel can become disorientated and confused very quickly. As a result, the majority of trips outside are taken in a wheelchair with either myself or someone else pushing Rachel in the chair.

Rachel is unable to carry out the most basic of household tasks and struggles to look after herself due to the chronic fatigue, exhaustion and tiredness she experiences on a daily basis, as well as confusion and disorientation. She requires almost constant supervision and undertaking the most menial and basic tasks prove extremely problematic.

So, as well as working full-time, I look after the household and provide care for Rachel, ensuring she is able to get out of bed in the morning, wash and dress and is able to go downstairs. More often than not Rachel is confined to our house as the combination of the effects of her CFS makes it impossible for her to spend any time outside on her own.

During this typical day I will also be carrying out the responsibilities of my own full-time job, looking after the house and garden and dealing with any visitors, telephone callers, deliveries or other occurrences…”.

I struggled to write that letter and I still struggle with describing myself as a “carer”.

Perhaps it points to the fact that there is still part of me that is in denial? I’m unwilling or unable to accept the extent of my wife’s illness and the impact it has on us both.

But I’m not sure that is the case for the simple reason that I think I may have adapted to my wife’s illness sooner than she did herself. I’m acutely aware of what my wife’s illness means as I live with it every day too.

I don’t regard any of this as a selfless act. If anything I think I’m being quite selfish because I tend to think of myself a lot more and what Rachel’s illness means for what I want to do – or can’t do.

I also feel selfish because I can’t help but think how I would cope – or wouldn’t cope – if I had developed CFS. I feel thankful I haven’t and amazed at how Rachel herself has coped.

If I do sit and analyse the last 18 months in terms of Rachel’s ill-health and the impact it has had then there is one over-riding emotion – frustration.

It is frustration directed completely towards the illness itself.

I’m frustrated about how it has exercised such control over Rachel and us and that there isn’t a straight-forward solution. I’m frustrated at the lack of understanding amongst the medical profession and wider society and frustrated that if Rachel hadn’t been diagnosed with CFS and enjoyed good health then I would be just as ignorant today as most people are about this debilitating illness.

I’m frustrated that the illness didn’t leave us alone to enjoy the sort of start to married life that “normal” people do.

Above all, I’m frustrated that I can’t wave a magic wand and make everything right.

That is what ME means to me. But does that sense of being powerless make me selfish whilst Rachel herself struggles with the day-to-day reality of CFS?

I’m not sure this provides any startling revelations. I’m not entirely sure it achieves what I set out to write.

The conclusion I have is that amidst all the uncertainties that CFS provides, the most important thing I know is that my wife isn’t defined by her illness.

She is still all the things I fell in love with six years ago and life with her is still a brilliant adventure.

There is a big world out there and we’ll carry on exploring it together, just in much smaller chunks.

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5 responses »

  1. Nick Scott Donald says:

    Unsentimental… yet a more romantic piece of writing than you would find in any “romance” book or film, I think.
    Unfortunately, however, being in a not dissimilar predicament to Rachel, I find that the “trivialities and incidentals” of life are not so willingly dismissed by all of us!
    But the willingness to freely admit frustration is the beginning of wisdom, I think, for “sufferers” and “carers” everywhere.

  2. Paul Groves says:

    Thanks Nick. I’m also frustrated by the fact that I didn’t know what to write and now that I’ve written it I’m not sure it is exactly what I wanted to say!

  3. Rachel M says:

    Thank you for sharing your side of story. As I’ve seen many healthy partner left their ill partner because they cannot deal/cope with it anymore, or refuse to accept it as part of their lives, your attitude is really refreshing. You look at ME/CFS as a joint project with your wife Rachel and it is heart warming to me.

    Focusing on positive and possibilities of life together is great. From a sufferers point of view, having such emotional support is priceless. (Well, you need to ask your wife Rachel as I cannot speak on behalf of her.).

    You may not tell everything with just one post, but it is a beginning.It might open up other “healthy partner” or “carer” to openly share their experience and point of view.

  4. Paul Groves says:

    Thanks Rachel. I think one of the the things that helps me is that I tend to focus on the little things more than the bigger picture. I know I can possibly make more of a difference that way.
    For example, one of the things I miss the most and look forward to doing again is going for a long(ish) walk with Rachel and simply strolling along side-by-side, holding her hand.

  5. Rachel M says:

    🙂 That is romantic!
    I have asked Rachel to clone you and ship one to Australia. I better double check with her how the progress is going.

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