Tuesday, 19 July 2016

GETTING BACK OUT INTO THE WORLD



When you've had to spend a prolonged period of time within four walls, getting back out into the world comes as a bit of a shock. Over the past 18 months, I have gradually been building up the amount of time I am able to spend outside of the house and it's been the most amazing, terrifying and overwhelming thing I have ever had to do.

Before I fell ill, I was extremely independent. If I wanted to do something, I would very rarely look to other people before getting started. I'd hop in my car and drive with little concern if I didn't know exactly where I was going. I could leave the house in the morning and not think about when I might be back again.

When my health deteriorated this was no longer an option. I never knew when I would next feel so overwhelmingly unwell that I needed to get back to my bed immediately. Leaving the house started to feel like someone was turning up the volume and brightness levels to the point where my head might explode. Every noise hacked at my brain and smells that I would have thought nothing of previously left me feeling so nauseous I could barely speak for fear of being sick. I had worked with a lot of children with Autism in the past, but never truly understood what sensory overload could feel like.  To have that kind of heightened sensitivity to the world is beyond exhausting.

At my very poorliest, a trip to the doctors would wipe me out for weeks and it would be a long while before I attempted another trip out again. Very gradually though the time between outings started to reduce and eventually I started trying solo trips.

Adjusting to being in the world on my own again has been a surreal and frightening experience that I never could have understood before I found myself in this situation. I decided on the very first trip I attempted on my own that I wanted to share what it felt like.

Over a year ago now, I made my first independent visit to the Waterstones cafe in Sheffield. I got in a taxi and made terrible small talk with the driver while the vibrations of the car made me feel like  my body was crumbling on the inside. Shaking, I then walked the 20 or so metres from the car to the entrance to Waterstones. I walked through the shop (which was thankfully very quiet) to the back where I would get in the lift to the first floor cafe. I pressed the button, waited and nearly burst into tears when the light didn't come on. The prospect of walking up the stairs was just too much for me to even contemplate. Eventually the lift doors opened and I made it up to the cafe. When I ordered my drink the kind lady behind the counter had to ask me to speak up twice as I'd spoken so quietly. I then tried, unsuccessfully, to carry the coffee and my walking stick to my table. Seeing my hands shake, the same kind lady carried my coffee for me. I sat down and breathed a small sigh of relief. I'd made it. I remember looking around me with my heart pounding in my chest thinking 'these people have no idea'. What is just a coffee to them genuinely feels like the biggest achievement of my life to date. I felt terrified and overjoyed at the same time. I got out the book I'd brought with me and stared at the page. I couldn't focus because my eyes were full of tears. I couldn't believe how much sitting with my coffee in that Waterstones bookshop meant to me. I stayed for about twenty minutes before triumphantly getting a taxi straight back to bed again.

I tried small (but giant to me) trips like this regularly. Gradually over time they got a little bit easier. I started branching out - trying Costa instead - and extending the amount of time I stayed. Some trips were good, others didn't go well and I'd beat myself up when I got home, disappointed.

I started getting dropped off a bit further away from where I wanted to go. Those slightly longer walks from the car to the door were difficult. Everything felt like it was moving at a million miles an hour. I was standing still while people cars, dogs whirled around me. I felt vulnerable. Crossing the road I was so scared of not getting to the other side quick enough that I waited to the point where my legs were shaking from standing still too long.

Every time I independently crossed the threshold of the house though was a small victory which has cumulatively had a huge impact on my confidence.

Now it's something I don't have to think about anywhere near as much. I'm very lucky in that my health is a bit better which makes everything much easier. Some days I can get overwhelmed but I am better at finding somewhere to sit quickly or taking a few deep breaths to steady myself. I don't have to plan my escape route so meticulously or feel like a fraud when I speak to anyone.

It's been a slow process but I finally feel like I'm coming out the other side. Something I think about a lot, is just how grateful I felt when I sipped that coffee on my first solo outing. I was so appreciative of the opportunity to do that on my own again. As I (fingers crossed) continue to build on what I 'm able to do I don't ever want to be complacent about the little things. I have a lot to be thankful for, have made a lot of progress and I don't want to forget that.


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Monday, 11 July 2016

INSPIRED BY... SIAN WOOTTON



Sian is without doubt one of the most kind-hearted, generous people I have ever had the good fortune to get to know. Before I write each of these little introductions to my interviews, I jot down a few key things I want to say about the person. For Sian, I have triple underlined the world lovely. However her day is going she is endlessly considerate, thoughtful and supportive. I feel incredibly lucky to call her my friend.

Sian works tirelessly to support people with health difficulties, both through her blog and as Queen of  Team Princess, an ME fund- and awareness-raising group.

For all of the above, Sian inspires me daily and I am excited to share her answers to my interview questions.


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What are you most proud of? 


Looking back and also thinking about my current situation I think I am most proud of something that no degree or accolade could have given me. And that is my perseverance and the ability to get myself through each day and not break down. Yes I feel sorry for myself every now and again and life as a chronically ill disabled person throws all kinds of challenges at you. However I can honestly say that each day I will have something to smile about or be grateful for. As well as handle it all with sense of humour. 

About 6 years ago I lost my will to live, suffered major anxiety and self harmed. It was terrifying. Through it all I was just so scared of my thoughts and actions because I didn't want to feel/be like that. I'm lucky in a way to have had that fear because it made me get help straight away and to continue going to get help each time things were at their worst. And I'm lucky because I got better. At the time of my ME diagnosis and where all my former achievements were pulled out from under me, I thought all those feelings would come flooding back. I'm lucky they never have. Even when pain has been unbearable, plans have been cancelled or when I need to be spoonfed. I'm so proud I got through that time of my life and how I am coping so well mentally and emotionally with being chronically ill. I'm not ashamed to say that I give myself a pat on the back every now and then or more like treat myself to some internet shopping. I can honestly say I am happy, which truly baffles many. My circumstances could of course be better but I'm doing okay.

 

Who/what do you look to for inspiration? 


I have never been swayed by celebrity or fame. Most seem desperately unhappy. But what I have always been drawn to is people that just exude so much love for what they do or the life they're leading. People that have gone after their goals and getting to live them, but they still can't quite grasp just how lucky they are. No matter what it is. People that in a way make their own happiness. 

Now, of course I have to include the wonderful people in the chronic illness community that I've got to know through blogging and social media. People with so many struggles yet they're determined to not to let their illness define who they are. They've been dealt a bad hand yet they are somehow making the most of what they can. How we can all manage a smile each day just shows strength of character. They know the reality but have so much hope. When you then add that most will dedicate part of their day to check in with you, offer support and cheer at every step forward you make, knowing just what it cost you, you know you have something special. Whilst many of them might not think they're very inspiring stuck in their beds, I'd definitely refute that.



When chronic illness feels like a bit of a cloud, what’s your silver lining? 


One of my favourite quotes is 'every day might not be good but there is something good in every day.' And it's so true. Sometimes, on the worst of days, you have to search hard for it and feel like it's such an insignificant thing, like your pain level was a 9 not a 10, or you drank a cup of tea from your favourite mug. I guess just trying in itself is a very shiny silver lining. Having that resilience to keep looking even through heavy cloud. Having a great family that care for me in every sense of the word has certainly been a blessing. Then of course there's the spoonie community and friends as mentioned above. One whiff of struggle and a lovely message full of support and kindness is pinging your way.

 

What would your advice be to someone who has recently fallen ill? 


You are a lot stronger than you think. And somehow you will find a way to cope even though you think that will be impossible. That doesn't mean you are giving up or giving in. Of course it will be very hard at times and you will grieve. The best thing you can do is not torment yourself thinking about how your life is meant to be or compare yourself too much to others. Focus on doing the best you can for yourself in each moment. Sometimes that means doing nothing and resting, it's important and healing. It's not lazy or obstinate and it's certainly not what you want but it's what you need in that moment.



PLACES YOU CAN FIND SIAN




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Monday, 4 July 2016

INSPIRED BY... OLIVIA COLE



In this post, I will be sharing the answers the lovely Olivia Cole gave to my 'Inspired by..' interview questions. Olivia, beautiful inside and out, is the founder of the CFS Selfies Campaign. She has done an incredible job bringing visibility to what is often perceived as an entirely 'invisible' illness. Through her campaign, Olivia asks that people living with CFS / ME share photos of themselves from better and worse days. The hundreds of photos she has received (and shared with a wider audience) highlight the fluctuating nature of the illness and how while someone may look 'well' on a given day, it could be a very different story on another.

Olivia has done a great deal in raising awareness of the realities of CFS/ME, perhaps most notably when she appeared with her Mum on ITV's Good Morning Britain.



I was excited to learn that Olivia also recently started writing a fashion, beauty and lifestyle blog. I had a browse the other day and was not in the least bit surprised to see it looking amazing. I can't wait for future posts!

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What are you most proud of? 


I would say what I'm probably most proud of is my CFS SELFIES page on Instagram. For years I didn't know one person who had CFS/M.E and it can be a very isolating illness. From setting up CFS SELFIES I found a whole community of people who felt the exact same as me. I hope that all the other sufferers out there felt that they found others who instantly understood them too and that it has helped what could be a lonely fight that little less lonely.

Who/what do you look to for inspiration? 


I would say that the person that I look to for inspiration and that also inspires me a lot is my brother Alex. He has always been set on what he wants to do in life since a very young age and is now taking all the steps to reach that dream. He is always very supportive of me and has shown me that there is more to life than just being ill and that if I believe I can, then hopefully one day I'll also be taking those steps to achieving my dream.

But also my parents they inspire me a lot too, they've more a less both put their life's on hold to care and look after me and I will never be able to thank them enough for that and their constant positive support and belief in me.

When chronic illness feels like a bit of a cloud, what’s your silver lining? 


My silver lining is having days where I'm well enough to go out either in my wheelchair or maybe walking and just be able to see the countryside or forests and just appreciate how beautiful the world is. This is something you definitely appreciate more after being stuck indoors unwell.

What would your advice be to someone who has recently fallen ill? 


My advice to somebody who has recently fallen ill is definitely to listen to your own body, if your body is telling you to rest, then rest. Don't let anyone push you to go out when you yourself know it's going to be too much for you. You know your own body better than anyone else after all! Also find people like you, you can then compare symptoms and know that there are so many others out there who feel exactly the same as you.

Definitely never become your illness, always remember who you are and what hobbies you love doing, even if you can't pursue them now, just believe that one day you'll be able to- Always have a dream.



PLACES YOU CAN FIND OLIVIA







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YOU CAN DO ANYTHING BUT NOT EVERYTHING


A little while ago on this blog I started a series of posts where I interview people who I think are wonderful and who inspire me in one way or another. As I'm prone to do when I have a new idea, I threw myself into it wholeheartedly. I sent out a flurry of messages on Facebook /Instagram/ Twitter to people I admire immensely explaining the idea and providing them with the interview questions I had in mind. Lovely as the people I reached out to are, they got back to me pretty much straight away with their answers or a commitment to complete the answers when they were able. I was blown away and felt so grateful to them for their time and precious energy. I started writing up the posts and publishing them here on my blog. I absolutely loved showing off the people I admire and enjoyed the whole process of putting the posts together. Then (as you may have noticed), things got a bit quiet. It has now, shamefully, been three whole months since I posted my last interview and I still have (brilliant) answers that I'm dying to share sitting in my inboxes and drafts.

The truth is that I've been a bit over-ambitious. I've been very fortunate to see improvements in my health lately which has skewed my perception of what are realistic targets to set myself. I am beyond grateful to be able to use my body a bit more and as result have been trying to make the very most of it. This has meant though, that I've probably said 'yes' a few more times than I should have done. I've stretched myself personally, physically and professionally (as strange as it feels to refer to BearHugs as my professional life!). It's become pretty clear, that while I can cope with extending each of these areas in isolation, stretching myself all at once is not sensible or sustainable.

My blog has unfortunately become a casualty of this little learning curve and I feel so very guilty about the interviews I've not yet been able to share. Today, I've made getting this blog back on track number one priority. I've got a (far more realistic!) schedule planned out and it feels great to be taking back control.

Over the coming months, I'm looking forward to attempting to restore a bit of balance to my life. It's going to mean saying 'no' occasionally but that's ok.

Thank you so much to the lovely people who have answered my interview questions and bore (?) with me. The posts are on their way now and I cannot wait to share them. Once I'm all up to date there are a fair few other inspiring individuals that I would love to have featured too.

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