Why I am taking a break from the blog.

Wasn’t expecting to write this. Cf week was meant to be about my life. But this isn’t really about me. And I have tried to make the blog work, this week, and last few months I think there’s been a voice in my head telling me it won’t work. I need a proper break.

This is the easiest blog I’ve written all week, all year, I’ve wanted to talk about something that happened to me years ago, for a while now. Here goes (some heavy stuff, cyber harassment which readers may or may not know about, not fully explained either for my own sake. and just so you know, i am ok, I have people to talk to, so I will be ok)

I’ve never officially said I am taking a blogging break, or a social media one, until now. I really really need one, I just don’t know how it will work yet. Because some of my best friends I speak to online. I use email for work, WhatsApp for work, Facebook messenger for work, twitter for work (need to stop using twitter so much) All I know is I need to use my phone a lot less.

I am a disciplined, well balanced person, so I’ve been told. I don’t feel like it today. I feel so vulnerable, so fragile, so unsure of myself and what the future holds. I’m so scared and embarrassed to tell you all on the blog. I need a break.

And who cares? I don’t know, but I reckon people do. I’m still online, I’m going to reply to people, just less. Not instantly. It might take me a day. I might not even be busy. I’m just overwhelmed. I don’t know what to say. I read your message when I was eating lunch, and I got distracted. I’m sorry.

I don’t know how long I’ll be gone, all summer, not until September at the earliest. I am not posting a blog, not writing a blog, I have so many notes, on my computer, email, folders, note tabs. Physical notebooks, scraps of paper. This is my life, this is my writing, this is how I write. It is messy so so messy, my whole life is a mess. I feel like a control mechanism of mine is a way of coping is to be organised, and yes I am very organised and goodness knows how I juggle everything.

Now I realise I can’t. I need a break. The longest break I’ve ever had. I’ve been studying for 6 years on and off at uni, and now I finally love my course. So that is my first break. I’m going to read on the environment for myself, if I want, and take it from there.

I really want to come back to the blog. I just know I can’t just yet. This wasn’t the end of cf week I was thinking of, planning all week, struggling so much with. However, it is, and this feels so right. So easy. I can’t talk about cf right now.

Because everytime I try, it reminds me of when someone called my a cystic fibrosis bitch in an anonymous text. And I am tired of tiptoeing around that fact. That person harassed me online on several social media platforms for over 2 years on and off, it started in sixth form, continued at university. I thought they went away but someone has been harrasing me this year again on my Instagram account, which I have since made private. I hate that it came to this. They haven’t won, but I need a break for myself. To try and deal with it all. Because that is seven years of denying how I felt about it, feeling like it didn’t matter because I wasn’t physically abused or raped, it all happened online. But it does matters, and it makes me cry that I’ve not let myself get really angry and upset about it. Told more people. Told the police when it mattered. Because I don’t have all the evidence any more. It’s my word against his/theirs. I still don’t know who did it. Or who continued to cause me anxiety and grief. I don’t worry about it every single day, but this year it got worse (last year, last summer, I wrote a piece for an APPG and went to houses of Parliament on the impact of social media use in young people and mental health, writing that took weeks and took it all out of me. Maybe that was the start. And again, last october/December, some more online harassment, I won’t take about that. Paranoia made me think it was the same person but I don’t think it was)

And I tried to use social media platform more to tell them that it didn’t bother me, that I won’t let them get to me. But I think it’s made me feel worse, hiding under a mask that doesn’t feel right. I need a seperate account that’s public, another that’s private. So I’m not quitting because of them.

I’m quitting because I need to get off my phone a bit. I’m still around. Just not as much. And I won’t be replying straight away anymore. I hope you all can understand. Thank you.

CF week, to post or not to post?

I’ve been thinking of cf week for at least a month, in the back of my mind with everything else that’s going on (uni revision studying, work, exercise, all the life things before cf stuff!)

Here’s a scrapbook thing I made a few weeks ago, trying to think of ideas for a blog or a fancy social media image. I think this will do.

I don’t know where to begin to talk about life with CF. Because it has been difficult for me the last few months. I’ve been having real conversations with friends, people in my life, cf friends too, and this has been helping me.

I’m not sure that posting on my blog/ Instagram/social media is what I need right now. I will try and get one for ‘cf yelfie’ Friday but I’m not putting pressure on myself to do anything at all. This is my first week of work and studying I have had in a while.

And I’m doing my best to not have many plans. I am seeing a friend on Friday, but otherwise, this week is all about me. And I am happy with that.

CF is not the fight we must win, anxiety is

 

 

Here goes…

 

I am going through a lot of health struggles at the moment, physically and mentally, I am exhausted, and I feel upset and angry, so I am going to be careful what I say here.

 

I don’t want to be negative and rant and angry, and have a go at anyone, this is not my intention. The whole spark to the flame was a campaign that was negative and aggressive, so I don’t want to retaliate in the same way

 

 

It started with an Instagram ad I saw a few days ago,

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Then I spoke to my CF friends, who I get on so well with and we speak all the time, I said I was annoyed, and they all totally agreed, it’s not just me being a bit sensitive. It’s a totally insensitive campaign. The more I think about it, the more upset I get.

 

 

 

Don’t get me wrong, I see the intention and possible good nature. (please see this Instagram post for my initial thoughts) I love the CF trust and the work they do and people who work there, they really care (I hope!) and want to help. I just don’t know who came up with this campaign, it is so negative and honestly what is so bad about yellow.

 

 

 

I just don’t see what they are trying to achieve by telling people to wear yellow anyway, if they hate it.

And then I saw it again,photo5771605756087480841

same post, different image, it won’t stop. I was still upset.

So I wrote an instagram post (see here)

And it just makes me think, one day of wearing yellow does not make up for all the people LIVING WITH CF, dying with CF, struggling and fighting and doing so well with CF, when you able bodied people can wear yellow for a day, think about CF for a day, and potentially forget all about it after CF for a week

 

 

And CF is not just negative. I have met some of my best friends through CF

 

 

And love it or hate it, CF is with me for the rest of my life. I have spent my life hearing people tell me that I shouldn’t let disability define me. Quite honestly I am fed up of that mantra, Because when I struggle, which I have, because of CF and other many many reasons, CF defines me in those moments.. And ok, I am so much more than my CF. But when I struggle, when I suffer, which isn’t every day, but it does happen, I am down. And this is not CF alone, it is very much anxiety too.

I have struggled and suffered with depression and anxiety, un diagnosed, I am diagnosed with CF and CF DIABETES. But it is the anxiety the health anxiety that I fight for every single damn day.

 

 

And if that isn’t what I am fighting for, for disability and mental health awareness, for self-advocacy, empowerment, peer support. Then I don’t know what I am fighting for

 

I am tired of fighting for ableist campaigns. I don’t think I am reading too much into this. Because that is what connotations and subliminal messages are all about, they are subconscious, and we don’t realise.

 

Language and messages that we tell ourselves, we tell other people, they are powerful.

And I just want to end with this. I may not have hundreds of followers or likes, but I hope someone listens. Because this can be reaching so many people, and that’s not great.

Choose your words wisely, please.

Follow empowering Youtubers, or people on Instagram, there are lots of empowering CFers out there, if you need any names of people to follow, please ask me!! PS Claire Wineland, Lauren Rowe are just a couple, they are great. But there is so much more out there.

 

 

 

Setting intentions, positive thinking and (successful) revision- a note to self

Setting intentions and positive thinking are not magic spells that if you say them, you’ll be fine.
I might fail my exam tomorrow, but I also might not. I might do great!
Doing revision has taught me a lot, possibly more about mindset than anything else.
The more positive I am about my revision (and yes, the more fun I make my learning) the more relaxed I am and the more I can remember
I can never do all my revision, learn the whole textbook (and this isn’t just procrastinating, being on social media right now, I’ve also had some health complications that set me back a month finishing my assignment and  doing revision in April/May)
– see photo of doing my last assignment- with a month extension because I was verrryyy constipated and was going back and forth to hospital appointments (and toilet!!) and somehow managed to get my work done….
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Reflecting on this has helped me realise, really doesn’t matter how tomorrow goes, I HAVE done my best, and being on social media typing this out- in my *hour* lunch break 😱 doesn’t mean that I am going to do badly tomorrow.
Because success and preparing for greatness is so much more than that. Its the little things you do, and the big picture preparation. And that, actually, it’s ok if I fail, and doing my best is going to look different every day. It is different for everyone.

Why I am never giving up social media

https://onezero.medium.com/we-dont-need-social-media-53d5455f4f6b

YES, this is why we absolutely need social media.

This is a response to the article

‘Why we don’t need social media’

I have an awful lot I have to say on this subject, and I don’t think this blog will do it justice as its such a huge area I am passionate about. But it’s a start.

I wondered ok, maybe this authors argument would be we need alternatives to the corporate Zuckerberg run sites, or the data stealing platforms. However is wasn’t, but it was a case against the whole thing. From getting out in the real world, to speaking people in real life, to buying tickets.. That it makes our life more convenient and immediate, we hear this time and time again.

Yet, we don’t hear the other side, this is all such an ableist opinion. A privileged able bodied person has said this*, with no idea of the benefits that the Internet generally has for disabled people. In a world which can be very inaccessible it gives people opportunities.

Social media is not the enemy, how we use it is. There have been people in my life that have made me reslly reconsider how much I use it, and yes I am somewhat addicted to my phone, but I wouldn’t have it any other way.

I’m going to start with how social media has helped me with my mental health. Especially in my past, I found it hard to talk to people. Being able to talk freely on my blog, was a start, it’s really helped me find my voice. There’s been many things come my way online, but some highlights of the opportunities it has given me when I have struggled.

I volunteered as a Facebook moderator for a mental health charity’s peer support group, 2 or 3 times a week I would do a shift, looking at posts replying to messages and making sure people were OK and smooth running of the group. I felt valued, supported and a real sense of community in that group. While I had my family, not many friends I spoke to regularly since leaving university, these were people I found strength in and felt good to talk to, I knew they would get my struggles when other people in my ‘real life’ I didn’t feel able to open up to.

There was a a sense of giving back too. I wasnt well enough physically to do 9 hours a week at an office job, for a start I would be coughing too much and would disrupt people, I also didn’t have the energy and so being at home in my pyjamas or comfy clothes was necessary, not lazy. I could be of service and ‘work’ and had a support group for myself, while being on social media, I have always appreciated that.
My second reason for social media, is the connection it allows for people long distance. I’ve got real encouragement from the NHS youth forum Facebook group, WhatsApp group, Twitter, Zoom calls, the Facebook events and the email updates, it’s been brilliant to be a part of that and to keep up to date on a national level over social media. We engage with out audience over Instagram, and I’ve developed social media skills and am hoping to have a job in future that involves communication management, which will allow me to work from home when my health declines (I hope it won’t but its unpredictable this chronic illness thing, and some days I have more spoons than others)
My final reason, and this could well be another blog post, is the CF community and the AMAZING friends I have online. I can’t meet up with them (due to the risk of cross infection we could pass each other bugs and get pretty ill) and that can be heartbreaking, but the fun and the laughs and the support and genuine love we have for each other in a new group I have (I say new, it’s been about 6 months now and we are so close) of course it’s a real shame we can’t meet up, but I much prefer this alternative and wouldn’t have it any other way. I get so much from them, and I speak to them daily, more than most of my ‘real life friends’. I think social media can allow shy people to be more confident too, I wouldn’t have opened up to people like this necessarily had it been a face to face thing, so I am aware of this.
I could write soooo much more about social media, it’s positives and potential and yes there are some damaging negatives (this I will leave for another time, but it’s something I am passionate about given my experience that some of you may be aware of)
I just really struggled to know what to write for Mental Health Week, and this very small introduction to some of the things that are important to me, that’s a start.
*this blog article post and his ideas, got such a reaction, almost anger, out of me. For another blog post, I am going to directly respond to all of the things he says we don’t need social media for, with the reasons why we do, especially disabled people!!

a little diabetes rant

right now I’m supposed to be doing a food and blood sugars diary to send to my dieticians. They asked me at my last appointment and I didn’t do it, partly because I genuinely forgot and also my diabetes control is so poor i’m too proud to ask for help, I should be able to sort this out myself.
The thing is, sometimes i’ll know why my blood sugars are high, i eat sugar foods and high carbs, and i don’t calculate carbs because i’m too busy! Erratic one day, the next I am careful, and the next I’m eating carbs and doing nothing to calculate or take insulin at the correct dose. Yes, I know how important it is to look after myself, I am looking after myself in a hundered other different ways, give me a break!
I’m doing the diary now and I’ll admit, I was eating buffet snack food with a friend and just enjoying picking and being reckless. Yet, I had the extra guilt that i should be carb counting and also counting fat intake for my enzymes. I just estimated both. And guess what happened. My blood sugars are high! 17.9 (they should be between 4-9) so I’ve really messed up. And part of me is so exhausted and doesn’t care. The other part of me did try with the insulin at least and not skip it all together. I wrote it in my diary, guessed 3 units correction and went to bed.
This morning it was 9.6 , so I guessed correctly this time at least.
The thing is, I could sit down and work out the ratios, it’s possible. If I did it on the morning I would have to allow maybe an extra 5 minutes to find the paper and pen, sit down and work out some maths. Or I could do it the night before, but how do I know what I feel like eating the next day? If my stomach is bloating I probably won’t feel like eating my usual filling breakfast. I’d have to weigh out and work out the quantities all over again.
Sure I will get used to all this with practice and effort. It will get easier I tell myself. But right now I am struggling mentally I really am, I have moments I lose my self control and willpower. I don’t want to have to think about everything I eat and the consequences of not doing so.
 I’m also so busy (I am So bored of saying that. Everyone is busy!) in other areas of my life and I can’t just cancel everything to look after my health, I’d be letting down a whole lot of people. Yes my health comes first, but I would be letting myself down. Because I’m just not trying hard enough to make myself well.
I should just think positive. And be so grateful, and I am and that makes me feel guilty. That I have to write this post and it’s so self indulgent. And I could have used this time more productively. I could have done some stretches for my sore shoulders and back (I did a few this morning! I could have done more. I’m also sitting in a really awkward position which isn’t good for my posture. But it’s comfortable for me! This is a whole other topic for another blog…)

Thoughts on a Boxing and Mindfulness class

Yesterday I went to a boxing class for mental well being, I really enjoyed it and found it an interesting combination of boxing and mindfulness,  so I thought I would blog about it.
I found out about it through the website Meet Up which is a platform for a whole range of events, and I’d seen this before and finally had a Saturday free to try it out. Also I had the motivation and confidence to turn up to an exercise class, I figured if it’s advertised for mental health it would be friendly (I was right, of course!)
The group was mostly women and one guy, it was run by a lovely psychologist type person who led the Mindfulness and she was really friendly and welcoming. Then they had a fitness coach who lead the boxing he was tough but also motivating and quite fun. It’s Good to have people shouting come on Chloe don’t stop! Really keeps me going. If I exercise on my own its too easy to stop and give up when you’re tired.

 

The class started with a relaxed warm up of skipping, go at your own pace, there were also some random rubber tires which I used for step ups and I think you could bounce on them but I didn’t try that.
Next was the boxing, I learnt the right feet and hand positions and a couple of basic punches, and then tried them in combinations, he would shout them out very quick and was hard to keep up physically, but it focuses the mind and you can’t think of anything else, which was good for me!
There was some pair work, which could have been daunting as I was the only new beginner person, the others had been there for a while. But the others were lovely and so supportive, which is just what I needed. I was getting all my left and right mixed up but my partner was so patient (like I would be!) So that was good.
Then the mindfulness. After all the exercise and getting my heart rate up Gosh I wanted to cough so bad at first and usually I would let it out if I was at home. But actually, stopping, slowing down, focusing on just the breath (I don’t know if you’re aware of mindfulness techniques?) Really helped and as my breath got deeper the urge to cough stopped! I couldn’t believe it. So I’m going to try and put more mindfulness breathing into my exercise and see if it helps with my breathing and coughing. I’ve always been so cynical before about it, so I’ll give it more of a chance from now on.
My legs really ache now, but in a good way, I have some stretches I do that I know from PT so that helps. I had a good first experience of a boxing class, I can’t wait for next week!