Thursday, 27 November 2014

EMBRACING LIFE


At 17, my boyfriend, Nigel, contracted meningococcal Meningitis. Just a few days later, he passed away.

There are a lot of things etched in my mind from that diffiicult time but by far the most positive and uplifting is a message from Nigel's Dad. He encouraged us, Nigel's friends, to draw life and hope from the tragic event; to go out and live life to the full, and to realise our goals and ambitions in memory of him.

In the years immediately after, I carried this thought with me at all times and had it in the forefront of my mind whenever I came to make a decision. I made a conscious effort to say 'yes' to opportunities that came my way and pushed that bit harder towards all of the things I wanted to do.

More recently, however, I have verged on being apathetic and that voice inside me shouting 'Life's too short!' isn't so loud.

Today, on what would have marked Nigel's 25th birthday, I'd like to renew that little vow I made almost eight years ago and start making more of an effort to embrace life again, to live it to the fullest. My body may not work quite as well as it used to and my goals and ambitions may have to take on slightly different form, but there are still endless opportunities I can say 'yes' to if I look in the right places. The inspirational achievements of those in similar situations to myself serve as a wonderful daily reminder of this. Over the next few months, I'm going to give myself that extra push I've been needing towards some of my new revamped goals and in the process, I hope, pay tribute to Nigel in the best way I know how.

My hope in writing this post is not to evoke pity or sympathy but to remind myself, and I suppose anyone who happens to read it, that life is short and precious and should be made the absolute most of accordingly.


Twitter  |   Instagram   |   Etsy Shop  |   Bloglovin'  |   Google+   |    Pinterest

Share:

Friday, 21 November 2014

ETSY CHRISTMAS GIFT GUIDE: £25 AND UNDER

etsy christmas gift ideas guide under 25 pounds freckles and all blog me/cfs chronic illness myalgic encephalomyelitis chronic fatigue syndrome

Being full-time poorly with ME / CFS means that money can be a little tight. This Christmas, in an attempt to save some pennies, I'm going to try to make the majority of my gifts by hand. In addition to the pieces I regularly make, I'm also going to try to branch out a little in my crafting. I've been gathering DIY tutorials by the dozen and am already enjoying getting stuck into a couple of new little projects.

If I'm very honest with myself though, I know I've not got enough in the way of energy supplies to make all of the gifts that I'd like to. I've therefore decided, inspired by L H Design's post about 'shopping independent', to try to buy the remainder of my gifts from small businesses and makers. With this in mind, I've spent a fair amount of time browsing Etsy.com and I thought I'd share some of the lovely pieces I've come across in the process.



Pink Rose Ring from BeauMiracleJewelry - £10.23

Floral Pouch from GalaBorn - £15.75

Handmade Charity Christmas Cards from Frojo Designs - £8.00 for pack of 10

Floral To Do Notepad from PrintStitchAndPaste - £6.56

Leather Phone Pouch from sukriyeozcandesigns - £14.44

Printable World Cities Wall Calendar from ArtFilesVicky - £18.00



Beige Crochet Slipper from White Noise Maker - £19.03


Sterling Silver Cat Ring from lunahoo - £24.94


This Is My Happy Place Mug from PrintableWisdom - £11.81


Hot Air Balloons Ipad Case from JoyMerrymanStore - £24.94


Small Blank Notebooks from notonlypolkadots - £3.50


Silver Flower Ring from emilyjdesign - £19.69


Could any of these beautiful bits inspire you to shop independent this Christmas?

Share:

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.


------------------------------------------------------------------------------------------------------------

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.


Share:
© BearHugs & Beyond | All rights reserved.
Blog Layout Created by pipdig