Trying to appear “normal” – Balancing Holidays From Home with my ME/CFS.
Posted by: Claire | February 22, 2012
I don’t really talk about my life with ME/CFS, it doesn’t seem relevant. That seems pretty dumb logic since the whole idea came from being ill. I do tell people how I came up with the virtual holidays, I have to, just to explain how the six years spent in bed gave rise to the idea of virtual holidays and parties. I gloss over the reality of how hard it was and how hard it still is, because I don’t feel like it’s important, at least not to Holidays From Home and does anybody really want to know anyway? I was worried that people might think I was using a sob-story about being ill for eighteen years, just to get attention, when that’s not it at all. I want to use those eighteen years to help other people going through similar things. I want to help them avoid some of the suffering, hurt and frustration that I’ve had to deal with.
I’ve also been worried that Holidays From Home will be judged, seen as less than somehow because I’m not “normal” and I can’t do everything that everybody else can. I’ve seen my illness as a weakness and I assumed that other people would too.
My illness is part of my other life, the part that people don’t see and up until now I have tried very hard to keep the two things very separate. People assume that I must be better now, that everything is back to normal and that’s my fault because I hide my illness. I don’t tell people that I can only spend an hour or two a day on Holidays From Home, because I feel like that says I’m not trying hard enough, or that I’m lazy, not that I physically can’t do more without making myself very ill. If people call in the afternoon, when I’m having my three hour sleep, that I need just to get through the day, then I get my Mum to tell them I’m out or in a meeting. Oh yes I work from home and still live with my Mum because I’m not well enough to look after myself. That just feels so embarrassing to admit. I work hard to appear “normal” because somehow appearing to be disabled seems like a crime, like admitting that I’m not as good as everyone else. Maybe that’s down to society, or even my own prejudices.
The truth is I’m still pretty much housebound and life is a constant balancing act between what I can physically do and how much resting I need to do, to make sure that I don’t relapse. I have become very good at pacing, the skill of balancing out activity and rest periods, so that you don’t use up all your energy and make yourself ill. I don’t always get it right and sometimes I ignore the signs because there’s things I need or want to do. I pushed myself for the virtual Valentine’s Day and I’m now suffering the consequences, having to take some time off to rest and let my energy levels and body recover.
I’m not complaining, I knew what I was doing and it’s worth being careful so that I start to feel better. I use the majority of my energy on Holidays From Home because I love it, it’s fun and rewarding and even if it is only for an hour, maybe two a day, it’s still worth the hours of resting and sleeping I need to do to be able to cope with it.
The hardest part I find is accepting my limits, I wish I could be doing more on Holidays From Home, my to do list is long; but my dreams and ideas are so big that it’s really hard I push myself. It’s frustrating when I’m so fired up with ideas of what I would like to be doing for the virtual London holiday and the Diamond Jubilee celebrations I have planned. I get annoyed that my body can’t keep up with my mind. I don’t want to admit, even to myself that I’m not able to do everything that everyone else can; but I do know that I have strengths because of my illness, insights that make me and Holidays From Home stronger. My illness is not my choice, it’s not who I am; but it is a part of my life. If I could get rid of it I’d do it in a heartbeat; but until they find a cure then I need to stop pretending it doesn’t exist.
I’ve been reading a lot about being who you really are, accepting it and not being ashamed, so I guess this is me putting it out there. My name’s Claire, I have ME and I won’t apologise for it anymore, even to myself.
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February 22, 2012 | Leah Shapiro:
Woo-hooo!!!!
Rock on Claire!!!!!!
Your honesty and vulnerability are so touching, and it makes me admire and respect you even more.
You have created something wonderful here and understanding your story makes it all the more powerful. It adds to your accomplishments.
Imagine all the people you will inspire!
Thanks for having the courage to stop apologizing and to start owning it!!!
Big Love,
Leah
February 24, 2012 | holidays4mhome:
Thank you Leah, that means so much. You’re the queen of owning who you are and you inspire me to do that too. I love your blog – http://www.defythebox.com/ it really inspires me. You were the catalyst for my courage.
February 23, 2012 | Magda:
Keep on keeping on xx
February 24, 2012 | holidays4mhome:
Thanks so much Magda.
You too! xx
February 23, 2012 | Jessica:
Claire, what an amazing post, full of courage and strength and dreams and ambition. I agree with Leah — knowing more of your story makes me see Holidays From Home in a whole new way, and gives you such a personal relationship with the people you help. I’m humbled and inspired by your honesty and courage. Onward!
February 24, 2012 | holidays4mhome:
Thank you Jessica, I was so scared writing the post and then hitting publish; but it felt like the right thing to do and almost poured out of me in a great stream. I feel like this cage has been lifted from my chest that I didn’t even know was there. Definitely onwards!
February 23, 2012 | Angel:
A’right… listen here, chicky
I liked you before… and I got into a lot of what I’ve seen from you.
Now, though??? Now I feel like we can connect on a whole other level.
I can feel you now, person to person and heart to heart rather than just words on a page. I love that.
Being able to connect with someone in that way is what makes me want to be around them!
I don’t care what your particular challenges are (not saying that in a cruel way, only that I care about *you* the person), and we all have them… right? Mine look different from yours, look different from the next person etc…
But the strength that you display by putting yourself out there in this way, in a way that feels scary and vulnerable to you??? That’s hot stuff. That makes me want to continue connecting with you in ever greater ways.
it also reminds me that I can do the same…
thanks for that…
sending you *so* much love!!!! <3
February 24, 2012 | holidays4mhome:
Angel you are a sweetheart! Thank you! Connecting with people, heart to heart is what I crave most, I’ve been missing having that kind of connection in my life and maybe that’s because I’ve been holding back part of me – that’s going to change now! Thank you for the beautiful comment and I look forward to us connecting more
February 23, 2012 | Bri Saussy:
Dearest Claire,
What a stunningly lovely and honest post. Chronic illnesses are so difficult to deal with on so many levels-I love the fact that in the face of your illness and inspired by your illnesses you have actually created a business.
Having suffered from chronic illness myself, I know first hand how tricky it can be to do the balancing act-I am sure you have read the article on “spoons”, written by a woman who suffers from Lupus-but if not shoot me a line and I will send it to you!
You are doing a beautiful job with the balance and you know what, you have absolutely nothing to apologize for!
February 24, 2012 | holidays4mhome:
Hi Bri, sorry to hear that you’ve had to battle chronic illness too. The spoonie article is brilliant isn’t it?! I wish I’d read it when I was first ill, it could have saved so much wasted energy and stupid mistakes when I didn’t understand the process of pacing.
I am so grateful for your support and kind words.
February 24, 2012 | Michelle:
Hi Claire – I love your honesty here! I struggled with a chronic illness – or something similar to it (I think it was a vitamin or mineral deficiency as it went away with a diet change) – for about several months in 2010 and it was incredibly difficult, not only to manage my energy levels but to try and explain to others. It can be really hard to admit to people that we’re in pain – it feels too vulnerable. I think you’re incredibly brave for working on Holidays from Home, and for writing this post. Keep up the good work
February 24, 2012 | holidays4mhome:
Thank you Michelle, that’s really kind. It is hard talking about it because it’s so hard to understand if you haven’t been there; but I’m realising that actually a lot of people have been there or have had similar experiences, you just don’t realise because… nobody ever talks about it! It’s something that definitely needs to change.