And so it begins…

chronic ilness, Drugs and medication, Lifestyle

Decluttering has commenced.

I started reading Spark Joy and it has inspired me to work towards the house and lifestyle that I want to have. The way she writes makes it sound so simple and cleansing – I genuinely couldn’t wait to start. It’s frustrating that I am so busy and unable to do it very quickly but I’m hoping that I can really make some headway with it during the Christmas break.

I started by bringing all my clothes and underwear into one place and going through them – removing anything that didn’t spark joy when I looked at it and touched it. To begin with it felt strange but after a while you definitely start to realise what gives you joy and what doesn’t. I have so many items of clothing and I am so sick of everything not being able to be packed away in a neat, organised way that is easy to see and make outfits from. I have been getting rid of clothes ALL YEAR! Still I have not achieved my goal!

I managed to chuck away a big bag of old clothes that wouldn’t be suitable to give to charity and a huge bin bag full of stuff to give to charity. But I still feel like I can get rid of more – I need to get everything together again and start comparing things to each other, to see what really makes me happy (whether it is for functional reasons or because I just love it) and stream line my collection even more.

It isn’t going to be a quick process but I can honestly say that, for the first time, I want to streamline my material possessions and keep it that way. Creating a less cluttered, more relaxing environment.

i have to say, though, this would never have been able to happen without the introduction of the prescription drug, Modafinil (Provigil is the brand name). Since having MS my fatigue has been such a huge battle. I have only had enough energy to do essential stuff (often not even that) and now this drug has boosted my energy enough to be able to consider getting other stuff done.

Before anyone thinks ‘there are other, natural, to things you can do to help your energy levels without prescription drugs’, I already do those things. I don’t eat refined sugar, I don’t eat gluten or much in the way of processed food. I eat regular healthy meals. I do yoga (when my body allows) and cycle (ditto) – and they have made a huge difference – but I was still unable to function to the level I needed. All I can say is that I understand people don’t want to have to take lots of drugs but some people really do need to. If you can find natural solutions that work for all 7 of my medications then I am all ears!! 😀👍🏻

Oh if you are interested – the film ‘Limitless’ is thought to be based on Modafinil. 

So, the decluttering will continue (energy and time permitting) and I’m hoping it will continue to give me the buzz! 

Spark Joy?

Lifestyle, mental health, Uncategorized

So I have decided to embark on a mission to get more organised, declutter and try to achieve some different goals for myself.

I have reached a point where my illness seems to be more manageable and I want to take this opportunity to grab life and do the things I want to do. I have several things I would like to achieve in my personal and professional life and I’m going to create a bullet journal as a creative and visual way to help me.

Has anyone else read ‘Spark Joy’? The book about tidying and decluttering that has prompted so many people to refine their material possessions. I’m hoping it will help me as I’m terrible for holding on to all sorts of nonsense. Have you had any experiences with it? Any advice?

Im going to try and record how it goes – that will be part of my goals… 😊

My new London Marathon running blog

Uncategorized

My wonderful friend and her journey to completing the marathon for the second time. So much has happened for her since 10 years ago, when she last ran it, I hope that this will be like the other bookend to those times – looking forward to reading about her journey 👍🏼😊

Debbie Humberstone BLOG

2016-08-29-10-58-23-2So, in April next year, I will be running the London Marathon.

I last ran London in 2007, at the age of 40. It was on my bucket list, and I ticked it off the list. But it seems that once wasn’t enough!  Next year, 10 years on, I’ll be running it at 50 … and until a month ago, I hadn’t run a step since the last time!!

And so, it’s back to training!

While running today, I had an idea to write a blog about my training as I inch towards London. Why? Good question! In part, to keep myself motivated, but also maybe to inspire and motivate others …

I hope my blog will provide an honest, warts-and-all account of my training – the ups and the downs, my thoughts and observations on the challenges ahead, why I’m doing it, info on my training plans, things I come…

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Interrupted

Challenging Situations, chronic ilness, Drugs and medication, Lifestyle, Uncategorized

It’s funny… the minute my life began to gain momentum – I started to dream about all the possibilities and the good things I could do for others – was the moment I was interrupted. 

And not in that brief way that you get interrupted by a car horn or a low flying bird, a gradual interruption that demands to be noticed. 

It happened in two ways. Two ways that are so different from each other that it seems unbelievable that they could have a similar effect. Both have helped me and one has hindered me and I don’t know what I would be without them. 

To me, they are both male, but one is beautiful and easy and steady and the other is tumultuous and demands to be attended to in every way. 

They are both constant and cannot be escaped – one I would like to and the other I would never dream of it. 

They both inspire me to be a better person, in more ways than one. But one does that in spite of its constant need for attention, adjustment, discipline and correction. 

One takes me away from toxic substances and one inextricably links me to them. 

One I have chosen to be with forever and both have chosen that of me. 

Sometimes I wonder if I could have had one without the other, whether I would still be wishing I could do more in life if your limitations had never been placed on me. And if they suddenly disappeared would I actually achieve it all. Maybe one day we will find out. 🙂 

One interruption was perfect and rebuilds me every day and the other slowly continues to chip away – I just hope we can keep up 🙂 

MS Society Information Day – Taunton, Somerset

Challenging Situations, chronic ilness, Uncategorized

This was my first day of this kind – obviously, as my diagnosis was so recent – and I didn’t really know what to expect or what I wanted to get out of it, just that I wanted to see what it was all about.

Our lovely friends, Dee and Tucker, had invited us to go a few months before and offered to drive us down – it seemed like the perfect opportunity to spend some time with them and get some more information around Multiple Sclerosis.

I didn’t know how it would feel to be around lots of people with the same disease as me. Previously I had only ever knowingly been in a room with one other person at a time with MS, so it intrigued me as to how it would feel knowing that most of the people there would have been through, or are currently going through, similar issues to me. Obviously it effects everyone in it’s own unique way but there are, ofcourse, similar threads of themes weaved in to each person’s story.

It actually felt really good knowing that everyone there would just get it. If I got an attack of the shakes or fatigue, nobody would wonder what is wrong with me, they would understand. That felt pretty cool actually. 🙂

The talks were really interesting and informative and delivered by people who were very passionate about making a positive impact on the lives of sufferers. Either by researching different ways of managing the symptoms or treating the disease itself. It felt good to know that masses of work is going on all over the country trying to expand on the very limited knowledge that we already have about it.

The talk about mood & cognition was especially good for me. It was great to hear an obviously very qualifed and experienced psychologist stand up and confirm that actually I’m not going mad, MS is not just a physical thing – it can play havoc with the signals and chemistry of the brain. I mean, I already knew this, but seeing someone actually say it out loud in those terms made me feel better about it – It’s not just me then…

They provided a lovely lunch, all free, with so many choices! There were also refreshments after each talk, giving people an opportunity to meet others and network.

We were told about all the new treatments that are in the trial stages right now. There are quite a few exciting things that should be cropping up in the next few years, including the stem cell stuff that was covered in the Panorama program a few months ago.

They had a fantastic amount of free literature available, every kind of booklet you could ever need! Even a free MS Exercising DVD with Sally Gunnall. I mean, what more could you ask for?? 🙂

All in all, I would highly reccomend these MS Society days – if you have MS or know someone who does it will definitely be very informative and give you the chance to meet other people in similar situations. This can be a great way to get advice on all sorts of things surrounding venturing into the world of MS, and a great support when needed.

If you would like to find out about events near you, head over to www.mssociety.org.uk

Please get in touch if you have any comments or experiences to share 🙂

 

Volunteering and why it’s awesome!

Lifestyle, mental health, Uncategorized, Writing

This is a great blog post by my partner talking about all the great positive things he gets out of volunteering. Well worth a read – follow the link below! 🙂 
By definition a volunteer is “a person who freely offers their time to take part in an enterprise or undertake a task”, now take a moment , read it again, let it sink in and now forget about it because it’s wrong. And the reason that it is wrong is because of the use of […]

https://learningblocksblog.wordpress.com/2016/05/07/volunteering-and-why-its-awesome/

A suspected relapse? 

Challenging Situations, chronic ilness, Lifestyle, mental health, Uncategorized

I always thought when I had a relapse of my ms it would be so clear and obvious that there would be no question around it. But I have realised that isn’t the case – for me at least. 

When I was diagnosed I had it in my head that things would die down to a low, manageable level and then stay there until some large event of pain or numbness etc. would signify that I’d had a relapse and needed to look at reviewing my medication. The thing is, with regards to symptoms, I have found them to be pretty much ongoing. I have just found ways of managing them and managing my life around them. They do fluctuate, week by week, day by day, but they don’t seem to really ‘get better’. Not yet anyway. Obviously it’s only been 7 months since I was diagnosed so this could all change. 

So relapse (at the moment) for me is about new pain or symptoms that last more than 48hrs. Over the weekend and the beginning of this week I had new pain and loud noises in my head and some pretty heavy duty fatigue – this has been considered, by my ms team, as a suspected relapse. It certainly felt like one.

Another thing that puts a question mark over it is the fact that if you have even the slightest sign of infection in your body or you have a big change in hormones it can cause unbelievable havoc with ms symptoms. If something causes your immune system to increase its activity, even slightly, it increases the number of those troublesome cells that attack the nervous system – causing the increase of problems. For example if my bowel disease acts up I can almost guarantee I’m going to have a tricky time with me. 

I am learning all of the time about my ms and the way it affects me day to day – and mainly how changeable it is! I am endlessly fascinated by my mind and body’s ability to heal and bounce back from all the stuff it has to deal with. 

Will I ever have a week with no fatigue or pain again? Who knows – I think it’s far too early to tell. I know I’m doing everything I can to help it so just got to try and keep the positive thought processes going and allow myself time and space to feel all the emotions that go with it. Always trying to be kind to myself and shrug off the highly ignorant judgement of others! 

Would love to hear if anyone else has experiences with chronic illness they would like to share and please get in touch if you need someone to talk to about stuff – I know it can be difficult to share with the people you love. 

Thanks for reading! 🙂

Is this a good place to start?

Lifestyle, mental health, Uncategorized, Writing

I am playing about with some writing at the moment. I want to intertwine the stories of 4 young women and include an element of mental health. Aimed at anyone really, but leaning towards a young adult audience. I started writing and have put together a passage of about 1000 words and thought I would post it on here to see if anyone has any feedback or comments. I know it’s not much to go on but it shoul give an idea of my writing style and the type of content. Let me know your thoughts 🙂

Ivy

Have you ever felt like you could be an outsider in your own life? Like a guest in someone else’s home, too uncomfortable to make yourself a drink or help yourself to a sandwich?  That was how it started.

There wasn’t some big event that kicked it all off – no defining moment of grief or melodrama – it just seemed to seep into the cracks of my personality and wash over me, with very little warning.

The loneliness didn’t help. That year it felt like I was always alone, just me and MTV and a confusing phone relationship with a boy who seemed to be as interested in getting to know me as he was avoiding any kind of communication with me in public.

Don’t get me wrong, there were parties and beach visits with friends, the usual social stuff that centred around the people that I managed to hide just enough of my personality to be associated with. Everything was the same but completely different somehow.

I don’t feel like I’m explaining myself very well.

All I can say is that I don’t remember where one version of me ended and the other began, but I do know that I started to feel different, like I had lost control over my life and was just a helpless bystander in it – hoping that someone else in the crowd was better qualified to deal with situation that was unfolding.

One of the main things I remember about my childhood was people telling me how pretty I was. People would often say to my mum, ‘Oh isn’t Ivy such a pretty girl’ or ‘She will be a heartbreaker when she grows up.’ These are, in fact, some of my earliest memories. I remember how proud mum would look as she bent down to stroke my shiny blonde curls, ‘You’re my beautiful girl, aren’t you?’ I would always smile and feel slightly awkward; I was terrible at receiving praise even then.

The more I heard it, the more it became part of the list of qualities that I learnt to attribute to myself as time went by. In my pre-teens, that list also included qualities like ‘clever’ and ‘talented’, but these swiftly faded and were replaced by ‘lazy’ and ‘overweight’ by the time I was about 12. And suddenly ‘pretty’ was all I cared about. It was like I felt it was the only one left so I better work really hard at it. I used to spend ages fantasising about being the most beautiful girl in the world, like a modern day Frankenstein’s monster, body parts of various popular culture goddesses sewn together and coated with a perfectly airbrushed finish. But, at some point, a ‘harmless’ yet constant  stream of daydreams started to take their toll – around that time, the bingeing began, and I started to panic.

Ella

As I scanned the room, I realised I had been stood there on my own for, what felt like, at least half an hour. If you multiplied that by how much of an idiot I looked and then a bit more for the awkwardness of it all, I had probably been standing here for about 7 days straight.  I had also become incredibly aware of how short and uncomfortable my dress was and the fact that my cheap, knock off ‘Spanx’ kept rolling in all the wrong directions, every time I moved – even if that was just to move from one foot to the other to stop the excruciating pain from my ridiculously uncomfortable shoes.

I checked my phone again. I have no idea why as I only had one bar of signal that kept fluctuating up and down, so it was unlikely to be of any use to me. Looking around I could see the problem. Apart from where the staircase came down in the middle, the room was completely enclosed and had no windows, due to it being situated a few meters underneath street level.

I looked over to the direction he had walked in – hoping to see him walking back towards me with two drinks in his hand and an apologetic look on his face. But all I saw were men in blue jeans with white shirts talking to pretty women with orange skin, with varying degrees of success.

It must have been about 20 minutes now. I stood on one foot like a flamingo and rotated my ankle. I didn’t know whether to stay put or go and have a look for him. Maybe he was in trouble or had been chucked out? As I released my foot back down and took a step forward, I felt my phone vibrate. It was a text from Ryan.

‘Where are you going?’

OK, I thought, trying to be funny and pull a prank on me. I looked around in a circle from where I was stood, but still couldn’t see him. I wasn’t amused, but I wouldn’t let on, I didn’t want him to think I was as boring as all of his previous girlfriends.

‘Haha you got me! Where are you?xx ’ It took a few attempts to send, but when it did I still wasn’t sure, as I didn’t get a reply. It was really starting to piss me off now. I walked over to a nearby sofa and sat down on the cold leather, avoiding the hole where the Gaffer tape had been vandalised, leaving the sticky side exposed and grubby.

As I sat and rubbed my calves, I remembered that we had sat here the first time I had come up to visit Ryan. We had spent the night drinking way too much vodka and laughing until we cried. I smiled as I remembered the way we danced and shouted to each other over the invasive thud, thud, thud of the bass. The way his gaze was permanently blinkered in my direction – I had the reigns and I knew it.

Another text.