My parents' views on my journey and recovery

Rather than choosing a photo taken when I was ill, for this blog post I wanted a photo taken before it all started. When it never even crossed any of our minds that difficult times might lie in store.

And when I speak about difficult times, I don’t mean difficult times just for me.

Although I was the one who was ill, I always say that I believe it was actually worse for those around me. 

5 months ago (has it really been that long?!), I wrote about my journey through Dermot’s eyes

And because some of you had asked and because my parents walked with me through the storm in every way possible, here’s my journey and recovery from extreme food sensitivities, multiple chemical sensitivity and chronic fatigue syndrome through my parents’ eyes.

1. In what ways did your life change when I was ill? 

 My life changed because I wanted to help you a lot. I used to come to you most days so I had to manage my time better. 

(By most days she means every. single. day. Rain or shine, unless she was down with flu or something major like that or unless it was the weekend and Dermot was home, she’d come here, do my shopping on the way, then do the housework, walk with me and listen to me.) 

Dad: This really taught me how unimportant the things we give importance to can be. You also learn how to bite your tongue when someone doesn’t remain as easy as they were before because of something they’re going through.

(Hehe not as easy as they were before is putting it mildly – I had become really irritable and used to snap a lot for no reason.) 

2. How did it feel and how did you cope?

I used to cry a real lot. But you just get through it. Prayers really helped me cope. Knowing how much support we had from friends and family and how many people were praying for us also made a big difference.

Dad: Although I was worried of course, I tend to be a calm person and also try to keep those around me calm. And yes, everyone’s solidarity and concern really helped.

(So true – I’ll never forget the overwhelming amount of solidarity and what a difference that made – thank you all!) 

3. Was there something which used to particularly frustrate or worry you?

Seeing you so unwell and helpless.

Dad: The worry that it was becoming long-term and that we wouldn’t find a way out of it.

4. What was the scariest moment of the entire experience for you?

Mum: One day I came to you, you were in bed and I kept calling you and you weren’t speaking to me. But you were opening your eyes so I knew you were awake. So I thought something really bad had happened. And I was telling you I was going to call an ambulance but you still weren’t answering. Thankfully eventually you managed to speak to me.

(I’ll never forget how terrible it used to feel when I wanted to answer Mama or Dermot or anyone else but was physically unable to when I had my most severe reactions.) 

Dad: When I realised how completely helpless you used to get on your worst days. Seeing you like that made me worry that it would become that way all the time.

5. Can you think of one positive thing which came out of this whole experience?

Mum: I appreciate our health more now. I realised how fragile it is and how many things we take for granted when we should be thanking God all the time. You learn to appreciate the small things so much more.

(I couldn’t agree more!)

Dad: It was amazing to see how Mama put in everything beyond what I thought anyone can. I also learned how important solidarity and hope are. You always have to believe and hope. I realised how even in such a tough situation someone suffering can remain positive all the time.

(Positive all the time? Much of the time maybe, all the time definitely not – I had quite a few low moments when I was far from positive.)

6. During the hardest times, did you think things would eventually improve?

: I hoped – I never gave up hope. But there were several times I worried that things would never improve.

Dad: Maybe not many times but yes there were times when I thought it was stuck like that. Especially when you’d have a good day and get hyped up and then a bad day the following day and that would be so tough.

(I always described it as an emotional rollercoaster in fact because of all the ups and downs and thinking things were improving one day but then suddenly having another flare-up.) 

7. Do you remember what you thought when I first mentioned DNRS?

 I remember hoping it would help but not being really convinced.

Dad: We were out for a walk with Christa (my sister, who’s an anaesthetist) and I remember being worried about how she was going to react and that she would dismiss the idea of it. And the minute she told you to go for it with no hesitation, I thought “Ah yes, there’s hope.” Just a glimmer at the time, but still hope. Especially since a medic was supportive of it.

(I remember this so clearly too. I was still really sceptical about the whole thing at this point but Christa’s encouragement from the minute I mentioned it made a huge difference.) 

8. Was there a moment when you realised things were going to return to normal?

: It wasn’t a specific moment, but as you started improving and your anxiety around the things you used to react to decreased, I realised things were improving. But I still didn’t think you’d go on to recover completely at that point.

Dad: I would never have imagined it could be as good as it’s been. Especially when so many things you tried before DNRS didn’t help or only made you worse. I remember seeing you coming down the escalator at the airport after your holiday with Dermot in Italy and thinking “Ah how amazing – she can live a completely normal life again.” 

(That was a major defining moment for me and you can read more about what it meant to me here.)

9. What advice would you give to anyone whose son/daughter is chronically ill?

Mum: Encourage them to do DNRS :) And give them all the help they need and give them your time. Listen to them whenever they want to talk. 

(No one could have done that better than Mama did. She was always there for me any minute of the day no matter what she was doing. When I thanked them both for all they did, she told me she’d do it all over again if she had to. I sure hope she never has to, but she’s amazing and I know she would). 

Dad: Grab your bags and run away haha! (Trust him to come up with something like that.)
No on a serious note, be patient, love and understand them. Help them hope even when it’s tough and you feel like screaming. And walk a lot! 

(The 3 of us reminisced about how much fun our walks always were and said we definitely need to walk together more often even now that I’m well.)  

10. What advice would you give someone who is considering DNRS but is sceptical about it?

 Don’t worry. The way it helped Johanna, it’s bound to help you but try to be as persistent and consistent as she was.

Dad: Go for it. Don’t hesitate and never lose belief in it.

When I asked them if they had any final comments, they both agreed that they’re so grateful that I discovered DNRS because it gave them their daughter back the way I was before the illness started. And I’m so grateful that they supported me every step of the way.