Dermot's views on my journey and recovery
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Two months ago I published an open letter to Dermot as we approached our second anniversary. In this letter I thanked him for teaching me the true meaning of the words "for better or for worse" by supporting me through my experience with a mysterious and chronic illness and for holding my hand and walking with me through the storm.
Back then some of you asked me to also write about the experience from Dermot's point of view. This month we celebrated our second anniversary and I decided it was the perfect time to do so. So here it is: my journey and recovery from extreme food sensitivities, multiple chemical sensitivity and chronic fatigue syndrome through Dermot's eyes.
1. Was there a point when you realised that my illness had become chronic?
It hit me how bad things had become in October (2015) soon after we got back from our trip to the UK to see the allergist. Although I kept telling you not to get your hopes up before we went, I was really hoping for answers. But when we came back, things initially seemed to take a turn for the worse rather than for the better.
The dietitian gave you something to follow but it was a really slow process and we realised how long it was going to take for you to get back to being able to have a ‘normal’ diet. And although you were already ill before, your health seemed to deteriorate quite quickly from that point onwards until you eventually stopped going to work and basically became housebound. And I thought “hmmmm we have problems”!
(Those of you who know Dermot can probably hear him saying that last bit in a jokey but over-dramatic tone. Never takes him long to switch from something serious to something lighthearted – one thing which really helped me through it all.)
2. What was the scariest moment of the entire experience for you?
(He had to stop to think quite a bit about this one.)
I’m not going to say the throwing up because there were so many times that you threw up.
I think the scariest moments were when you used to pass out because I used to feel really helpless and wouldn’t know what to do. You wouldn’t be able to speak to me and it was really scary and frustrating. Sometimes I’d feel like breaking stuff out of frustration but then I’d think “Oi then I’d have to fix it myself or pay for a replacement” and that’s the only thing that used to stop me.
(I must say I’m glad he never actually broke anything :))
3. Was there something which used to particularly frustrate you?
Apart from when you’d have a bad reaction and wouldn’t speak to me, it was also frustrating that everything was at a standstill: our lives, our plans, going out, meeting family and friends. Whatever was normal for others and for us before wasn’t possible any more – it wasn’t even an option.
I also never really approved that you were reading so much (but thank God you did because otherwise you wouldn’t have got better). But at the time some days your research wasn’t very successful. You’d come up with a new theory almost every day. The more you read the worse things seemed to get. Sometimes it was like you were driving yourself crazy, going round in circles.
(There were definitely days when I felt as though I was driving myself crazy – but I just had to keep searching for answers.)
Photo by Rene Rossignaud Photography
4. Did you ever wonder whether you could go on living with a chronically ill wife?
I was preparing myself for the worst for our lives together. But at the same time, it felt so unreal. I kept thinking that things couldn’t remain like that, but at one point I thought I’d better get used to it because it seemed it was going to remain like that for quite some time.
(As I’ve said before, Dermot really taught me the true meaning of the words "for better or for worse". He walked with me through the storm no matter how bad things got.)
5. In what ways did your life change when I was ill?
There was absolutely no structure in our lives. You had so many sleepless nights and then you’d be unable to get out of bed in the morning. We couldn’t plan anything, not even something simple like a meal together. There was also no spontaneity: we couldn’t just say “shall we go out?” and go out. There was just us and our home basically.
Training wasn’t a priority at all but the fact that I couldn’t train was adding to the frustration. Not the frustration of not being able to train, but because running helps me relax and because I’ve been running for so long that it’s strange not to.
So it was a build-up of tension. I was going from work to a stressful situation at home because you’d be really unwell. So I used to feel as though I had a knot in my stomach all day. And it was every day.
(And unfortunately for Dermot, my worst moments – the moments when I was angry and bitter – seemed to have been “reserved” just for him.)
6. Can you think of one positive thing which came out of this whole experience?
First of all, it was quite a big test for us. But it was just my duty to be there for you through it all and I never really understood why some of your relatives thanked me for it.
But the experience also taught me how fragile life is. We went through so many things that other things seem really trivial now and I try not to allow myself to get worked up about petty things any more. Life is too short for these things. I’ve also learned to prioritise better and to say no a bit more to make time for the things that matter most.
(The experience has definitely been an important eye-opener for both of us.)
7. During the hardest times, did you think things would eventually improve?
I wasn’t convinced but deep down I hoped they would.
8. Was there a moment when you realised things were going to return to normal?
Soon after you started DNRS, I already thought things were going to return to normal. I thought it would take time but I thought you’d get there. As soon as you started the programme, you started sticking to a routine so that was already good news.
You were believing in it and seeing positive results from it so that was the first important step. You were very committed to it and disciplined and that made all the difference.
Then there was a period when things were improving at quite a steady pace. Ok there were a few setbacks but it started taking a shorter time for you to get back on track so things were progressively improving.
(Details about my experience with DNRS here).
9. What advice would you give to anyone whose partner is chronically ill?
To have hope, always be positive and try to find ways to make your partner smile and laugh even when things are difficult.
(Those were definitely the things that helped me most.)
10. What advice would you give someone who is considering DNRS but is sceptical about it?
To have a go at it and really believe that with some effort it can actually work and it can change your life and give you your life back.
Any final comments?
At the end of the day, it has to start from you: you have to want to get better. It was by fighting for your recovery and never giving up that you managed to achieve it.
I’m very grateful that you came across DNRS because it was the cure and it gave us a way forward and our hope and dreams back.