Open Letter: Being a carer for my wife with ME

Martin met his wife over a decade ago, he’s watched as ME attacks the person he loves. His knowledge of ME has grown over the years and he’s now Lex’s husband and carer. Read his open letter below.

By Martin Bates.

Hi all,

I met Lex 11 years ago when she was mild to moderately affected, in a place of reasonable balance of working part-time, socialising and resting. I had next-to-no knowledge of ME/CFS and to be perfectly honest I probably had a typically ignorant view if someone had held a gun to my head and asked me about it.

Lex knew a lot more than me, having been diagnosed 12 years prior at the age of 15, but in hindsight she lacked understanding of the wider, or more detailed picture.

Her knowledge has expanded considerably during our years together, both due to her health deteriorating and her desire for me to be better informed so that I could support her. We did this through research and reading. A lot of reading.

Our family.


Twice she noticeably deteriorated; not long after we got together then 4 years ago, when our daughter was 2. When times became really difficult I reached out to Carers UK, who provided fantastic support and gave me the strength to be there for Lex. 

Facebook groups were a help, with people sharing their experience of ME/CFS, the medical profession and treatments they were trying. This helped Lex come more to terms with having ME/CFS and the limitations it placed on her. I doubt it can ever be fully accepted because of its inconsistent nature and considerable impact to life, but understanding more about the condition has helped massively. There is less guilt over not being able to ‘pull her weight’; more acceptance of the (im)balance of our responsibilities; less guilt over needing me to wash her hair or get things for her.

ME/CFS is a cruel, parasitic master; it is unpredictable, uncaring, ever-present.

It steals life from those who suffer from it; not just the day-to-day restrictions from the physical symptoms and co-factors – fatigue, POTS, searing headaches, severe muscle aches etc – but also when you’ve carefully scheduled in some social time in amongst days of rest.

This is arguably the worst; stealing hope and joy when you’ve done everything you can to be able to see a friend for half an hour.

The flare-up of a symptom for no apparent reason; a poor night’s sleep resulting in brain fog, fatigue and muscle ache; the onset of fatigue because you sneezed too many times or had a sit-down shower. Having to cancel that thing you looked forward to is crushing; enough of life has been snatched away already, yet it feels the need to twist the knife on a sadistic whim. 

I’m lucky, I only get to watch this happen. Selfishly that is hard enough; I can take the disappointment of missing out now and again because there will be other opportunities. I’m able to work, visit people, play golf, take our daughter to the park, cook dinner, have a few drinks, rearrange social occasions. Even after a bad night’s sleep. Writing this makes me realise (again) what healthy people take for granted. What we sometimes take for granted.

Imagine you’ve booked a dream holiday, one that you can only afford or fit in once every 5 years; maybe going to Australia for a month to visit a friend you haven’t seen for a decade. Then imagine the week before you go you are struck down with an illness that means you can’t fly and have to cancel. Now imagine that happening every couple of weeks. 

You know all this, you watch your partners/relatives suffer and struggle daily with the physical and mental symptoms. And it affects our lives too; yes we are fortunate but it’s important that we don’t forget our needs or feel guilty when we do things for ourselves.

Being a carer doesn’t mean that you give absolutely everything; that doesn’t have longevity and will likely lead to adversity for one or both of you. 

Make. Time. For. Yourself. 

Your partner/relative wants this for you, trust me. So make time to see friends, play a sport, practise a hobby. And when appropriate share this with your partner/relative by chatting about it, sharing photos and involve them in your life. Arrange things considerately and balance with your partner’s/relative’s needs: if you aren’t looking after yourself then you won’t be able to be there for them.

Something that is important for me to share is that there is no ‘normal’ when it comes to ME/CFS, whether this be for an individual or across all sufferers. The variety of symptoms and extents of those symptoms is staggering, as is the variety of treatments or practises that have benefitted various people to various extents. What helps one person may not help another. Another element that makes this monstrosity so difficult to manage.

Lex is currently trying compression tights to help with symptoms of POTS/dysautonomia (another debilitating, mysterious, chronic condition which is not uncommon alongside ME/CFS), to varying degrees of success due to the umpteen other variables at play. She takes a concoction of supplements inspired by Dr Myhill, and a medication called Ivabradine to reduce high heart rate, prescribed by her cardiologist. The latter is being used ‘off label’ and the long-term effects are unknown; however there appears to be some benefit so far. 

Leeds Millions Missing 2019 speech.

It can be draining but I think it’s important to do research, understand more about the condition and potential treatments, try things, persevere with medical professionals and use what you learn to influence them, share your experiences with others and be aware of The Open Medicine Foundation alongside Dr Ron Davis and his research/advancements; he provides reassurance that progress is being made.

Get involved with Millions Missing: have your voice heard and help the world become aware of the lack of funding and understanding there is about this condition that affects millions of people.

Leeds Millions Missing 2019.

For all of the above, I also believe it is fundamental for everyone involved to switch off, enjoy the simple things together, and practise gratitude. Despite everything, life is here to be lived to whatever degree is possible; hope can be found even in the darkest of days.

Take care,

Martin

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