Recovery: Breaking Out Of The Four Walls

Guest post by Natalie Ziegenbein – Thank you!

Independence: Natalie's First Trip Away From Home

Independence: Natalie's First Trip Away From Home

Most of my time prior to now has been spent writing articles and talking about how sick ME/CFS made me to make people realise how much it affects people’s lives. I’ve written endless articles, emails and spoken on YouTube videos about how sick I was and how terrible ME/CFS is. ME/CFS is terrible, but if the extent or severity you suffer to starts to decrease, life becomes this wonderful, magical place.

My name’s Natalie and I am one of those people that experienced the severe end of the spectrum and got ‘lucky’ enough now be experiencing a slow incline towards feeling ‘normal’.

When I was bed bound I constantly wondered why I didn’t appreciate things more when I was healthy. Why didn’t I pay more attention to what grass felt like under my feet? Why didn’t I look at the birds flying around? Why didn’t I listen and embrace the sound of music rather than getting annoyed it wasn’t a song I liked? Why didn’t I get that being able to operate the huge machine that is my car enabling me to travel over 100kph was absolutely amazing? I could go on forever…

Although I am still unable to do a lot of things healthy people would consider ‘normal’, (work, study, drive, go out dancing), I am insanely happy to be able to say I can do a lot of things that make life feel amazing again. Improving from chronic illness is about a billion times more awesome than you imagine it to be. Today I wanted to share some of my experiences with you.

My first big “Wow!” moment, apart from screaming, “Weeee!!!!” the the whole time on my first car trip, was the first time I was well enough to make it to the supermarket. The amount of things to eat, drink and buy, in that one tiny space! I couldn’t believe it. It’s so, so colourful. There’s all this beautiful, fresh produce in a chilled area and you can look at any of it and know that it was grown somewhere, probably somewhere beautiful amongst many plants like it and bought all to this one spot in time for us to still get a crunch. Apples and bananas may have been grown 1000 kilometres or more apart, but there they are, right next to each other, ready for you to take home and enjoy together from your kitchen. Better than that you discovered foods you completely forgot existed. Squash! I don’t eat squash so it’d been wiped from my brain, but there it was, this peculiar looking, beautiful bright yellow vegetable just down from the celery. The supermarket is beautiful, however I did find it sad how much pre-packaged stuff, such as chips etc there is (I swear there never used to be a whole aisle of soft drink). There are two negatives to the supermarket; they are way, way louder than you expect (I couldn’t bare it for more than a few minutes in the start) and they are way, way brighter than you expect. Over time, with further improvement, I have been able to adjust to both these factors. Besides, the positives of being able to be there, or any other place I mention, far outweigh any negatives that could ever exist!

Nat's first beach trip was cold but glorious.

Nat's first beach trip was cold but glorious.

The second moment I want to share with you was my first visit to a beach. This was probably my favourite moment because there was so much I forgot about the beach that is just as amazing as the scenery. I thought of the beach as a warm, picturesque place. With that, I visited on a sunny, but not summers’ day. There wasn’t a breeze to be found when we left home but when I got there, wind everywhere! I forgot that the beach was generally windier than inland, where I lived.
Photo of a footprint in the sand, "To prove I was there"

Photo of a footprint in the sand, 'To prove I was there'

With that wind though I recognised something else I’d either forgotten or never noticed before I became ill. You can smell the beach! It has this beautiful, slightly salty and definitely sandy smell. It’s the most beautiful smell (I love it so much I soon researched what the best ‘beach’ smelling perfume was and bought 2 bottles of it). Also, the little tiny holes in the wet, hard sand made by the tiny beach creatures you never see. I totally forgot they existed. The beach was freezing that day and no one was on it, but it was the warmest place I’d been in years and my face was cramping from my constant smile.

The last experience I’ll share with you was probably the most significant to me, and that was going on a weekend away with my partner. Leaving my parents who had been my carers for the previous 2 years was one of the scariest things I’ve ever done. I cried most of the way up there just terrified I wouldn’t be able to cope without them and backed out about 100 times before a friend, also ill, calmed me down through emails and promised me it would be worth it. Boy, was it worth it. I love my parents and I’ll never forget all the things they did and still do for me, but there I was, without my ‘carers’, and I was ok. In fact, I was better than ok. My lift in spirits bought about a small lift in ability and I was actually making my own breakfasts, eating at the table and going for walks around shops forgetting about consequences and pay back. Even better? I didn’t have any. My partner was there and that was a nice security blanket, but I didn’t need him. I even showered standing up both days I was there (and I was only experimenting once a fortnight at that point – I was much worse than I am now). I felt totally independent in a way I hadn’t in years and I’d totally forgotten how liberating that felt. Of course you can be chronically ill, even bed bound, and still be independent – but I hadn’t ever experienced that. If I felt hungry I could physically walk to the fridge and cupboards and see what was available and get something out that took my interest, put it on a plate, and eat it without having to ask anyone about any of it! To me, that was completely amazing.

Natalie on another trip away with her partner.

Natalie on another trip away with her partner.

Until now, I’ve been hesitant to talk about my improvement publicly. It’s the only (and very minor, almost not worth mentioning) negative thing you experience when improving from a chronic illness such as ME/CFS; a lot of people don’t really believe you. “You can’t get better from it”, “Don’t do too much, you’ll crash” and constant, “Be careful” comments are thrown my way weekly. But you know what? I am getting better, I’m so, so proud of it and I haven’t taken a single second for granted.

.. I even accidentally started writing this article with, “When I was sick…”

I had no hope, and now I have huge amounts. At least a few of you reading this will be close to how I was at my worst and now I am here, and it all happened within two years. It’s the scariest, most exciting thing ever – and totally worth the wait.

- Natalie Ziegenbein

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4 responses to “Recovery: Breaking Out Of The Four Walls”

  1. Natalie

    You are amazing Nat : congratulations on the article and getting better Xxx

  2. Naomi

    That’s great to hear Natalie! I remember watching your youtube video’s, you were seriously ill. Well done on the article and all the best for continual improvement.

  3. Natalie

    Thanks Naomi & fellow Nat =)

  4. Glenda Watson Hyatt

    Wow Natalie! Thank you so much for sharing your story of recovery, very moving, very exciting. You made me realize how much I do take for granted. For that, I thank you.

    Wishing you continued recovery and health!

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