Wednesday, 12 November 2014

JARED Q&A



To date, a large proportion of my blog posts have centred around my transition from being a healthy, energetic individual to an individual with the long-term medical condition M.E. / C.F.S. I'm hoping in today's post to offer a slightly different perspective on the changes chronic illness can bring about by enlisting the help of my boyfriend of three years and carer of eighteen months, Jared.

Jared and I are both now twenty four years old. At the time I fell ill, we were twenty two. When it became apparent that I was no longer able to look after myself, Jared never even entertained the idea that anyone else should take on the role of carer. When I suggested that I move back in with my family to save him the additional stress and responsibility, he was having none of it.

Jared's attitude since I've been ill has been incredible and I'm certain that had I not had his encouragement and support, I would be in a far darker place now. I will be forever grateful to him for all his help.


Below are the answers to a few questions I asked him about ME / CFS and life as a carer. If there's anything else you'd like Jared's perspective on, please feel free to leave questions in the comments.


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What did you know about M.E. before I fell ill?


Very little. I knew it was related to tiredness but that's about it.


How would you describe it now?


Debilitating. Frustrating. Foggy.


What has caring for me involved?


It varies from major things to minor things. Mainly it's more of a vigilance to potentially difficult situations. In general though, it's things like cooking, cleaning, cutting up food, making and lifting drinks, dressing and undressing, pushing wheelchair, carrying to bed, lifting out of chairs, assisting with walking, planning trips, making phone-calls, reading letters, talking at appointments, setting up rooms, arranging suitable entertainment, assisting out of bath...


How did you feel when you realised you were taking on the role of carer?


I never did really realise. When you live with someone there aren't many sudden changes unless there's an accident or something like that. One day I'm making a cup of tea because you've just got in from work and fancy one. The next day I'm making it because you've just got in and you're a bit tired. The next day I'm making it because you can't get up from the sofa and do it yourself anymore.


How has taking on a caring role at a reasonably young age affected you?


I think it’s probably made me both more and less caring. The reality of always being switched on to the difficulties of someone else, and trying to prevent any problems before they occur, means that you become sort of hyper-sensitive to potential hurdles.

The other side is, sometimes when people complain to me about some minor problem they’re having, a bit of me thinks about watching you struggle to chew food or walk up the stairs, and I find it difficult to take their problems seriously. That’s probably just a coping mechanism though. You can’t give everyone the attention that you give someone you’re caring for, you’d go mad.

When you’re young you feel like you can take whatever comes you’re way, so you don’t really need to prepare for anything. You can go out and not care about how you’re going to get home. That’s probably the thing that’s changed. Now I have to prepare a bit. I have to consider what might happen.


Is there anything you find particularly difficult?


Seeing you in pain, especially during simple things like getting up or eating.


How do you think our current situation has affected our relationship?


It gives us both the moral high-ground. You're in pain all the time, and I'm doing everything round the house, so neither of us can complain about the other one.


What's it like going out with the wheelchair?


To be honest, when we're out in public I've been pleasantly surprised with how considerate people tend to be. It's not a hassle or anything. I still find it kind of fun to push the wheelchair around, especially in places with smooth floors. But then I'm an idiot.



What would you say has been the most helpful thing since I've been ill?


Getting the wheelchair made a big difference. I know it seems kind of drastic at first but if you're struggling to walk it's really the only option unless you give up on going out at all. I also think the online community has helped a lot. In person I've tended to only come across middle-aged people who have any experience of CFS, so finding people who are a similar age and going through similar things definitely helped to get a perspective on things. It seemed to be a big relief for you to discover all these people who you could relate to immediately.



Are there any positives to come out of the situation?


We've responded exactly how I'd always hoped we would respond to something like this. Not that you hope anything like this will happen, but you hope that if it does, you'd respond in a positive way. And I know we have. That and cooking. Having to cook every day means I'm a hundred times better at it now.


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16 comments

  1. This is such a wonderful post Faye, it actually made me cry. Through the mistrust and comments we all get daily about whether we're 'really' ill we are so lucky to have amazing and selfless other halves. It sounds cheesy but an upside of this cruel illness is really seeing love. Your other half sounds like a keeper :) x

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    1. Bless you, Emma! I completely agree that one of the major positives to come out of this rotten illness is finding out just how strong relationships are. I do feel I've been very lucky. You're right he's a keeper! x

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  2. This post made me both happy and sad <3 So good to get an insight into the other side of things. What a great team you sound!

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    1. I hoped it would be good to get a slightly different perspective! Thanks Anna :)

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  3. I'm the same as Anna, it made me feel both happy and sad to read this. Happy that you have someone so loving and caring in your life and that you are still able to be in a wonderful relationship despite being ill. But sad to hear about all of the struggles that you face on a daily basis! Jared seems to have a great attitude!

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    1. If I think about it too much it makes me both happy and sad too, Jenny. He does have a great attitude and it's crazy how much of a positive impact that has :)

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  4. Really enjoyed reading this post lovely! Jared is such a gem! I love his answer to the qn about how it's affected your relationship :) we are very lucky to have such wonderful partners and Jared is so lucky to have you Faye! <3 hugs and so much love xxxxxx

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    1. I loved that answer too Soph :) We are lucky, you're right. Hope you're still having a wonderful time with Paddy. Loads of love xxx

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  5. A wonderful post! It's so lovely that you have someone by your side to help you, and it seems that Jared has such a great attitude :)

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    1. Thanks so much Gemma- reading comments like yours reminds me just how lucky I am!

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  6. This was such a heart warming post I think you have a great boyfriend and its lovely to see that there are guys out there that will care for someone with a chronic illness :) x

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    1. I have been very lucky that Jared was willing to take it all on I think. Lovely to see the email from you Laura :) x

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  7. I have no proper words to express my feelings. You both face a really hard situation, and I will never wish it to anyone. But you show such a strong and deep connection, and thank you so much for sharing this, for being open. There are no right words for it, just those which are in the heart. Thank you. Send you my love.

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    1. Thanks for your lovely comment Polina. You are so kind. Sending lots of love to you too x

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  8. Faye, you have a truly wonderful man there. Don't take that for granted. My husband of 14 years left me just 3 months after I could not longer work. I was left a sick, single mum overnight with no income. My new hubby has always known me this way and has seen beyond the wheelchair and unemployment. Our men should be celebrated.
    May you both have many good days. Cath xx

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    1. I am so sorry to hear about that Cathy- beyond relieved to hear what a star your new husband is. You're absolutely right that I shouldn't take Jared for granted- he's incredible and I count myself very lucky. Sending lots of well wishes your way xxx

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