Posts

Poem: Resolution

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Resolution is my new poem. The word means different things to different people: an outcome, a goal, determination. I would say all of these meanings have had relevance these last few months, and the important thing to take away is that I see light at the end of the tunnel; that what I am doing is taking effect. 

I am not always able to share what's going on or how I'm feeling, but I am a very positive person and I find my joy in so many things, including simple pleasures.

Just over a year ago, my last poem thanked those around me for their patience and support, and this hasn't changed. However, I have found myself increasingly grateful for the kindness they have shown me. 

I hope you enjoy the poem.

Resolution

There aren't the words, at times, to express all that I'm feeling,
There isn’t always strength to deal with what I'm dealing
I know I'm not alone in this; I know that I’m not crazy.
I know my efforts aren't in vain, and I know that I'm not lazy.

I&…

A New Perspective

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I've been thinking about my last post in the context of recent events. 


There is no question that when I wrote this, I felt frustration and disappointment. I thought that by talking about how I felt, it would be a way to turn it into something positive. Just as I suspected, I was approached by people for whom the blogpost resonated. I'm glad I spoke about it because it's not a topic people openly talk about very often. Plus, I'm an ENFJ, so...

Recently, I have realised just how fragile life can be. I know that sounds like an average platitude, but I never thought I would be presented with the opportunity to reiterate how true this cliché really is. 

We always think we have time.

I haven't spoken openly about this, so please bear with me. In September, my cousin was admitted into hospital with an infection. Her severe epilepsy brought with it complications, compromising her sight, hearing and communication. Whilst performing scans, doctors found a tumour, deep in an ar…

Ghosting Someone with a Chronic Illness

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It's been very helpful to put pen to paper on a topic I strongly suspect others may relate to. 

Ghosting: You may not be familiar with the term, but you're sure to have been ghosted in the past. It happens to many people. Firstly, if you have never heard of it, it's a verb.

What is ghosting? Lexico defines it as "The practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication." I wish it also added something like "you're a idiot; you don't deserve my friendship" but apparently that's not allowed, or something! (pah!)

Note this says 'personal' relationship, as anyone you know can ghost you - your friend, someone you're dating, a colleague or family member. To clarify, we all lose touch with people over the course of our lives, but that isn't ghosting. The difference here is that ghosting is intentional. It's a sudden, conscious decision; one that will likely h…

Where have I been?

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Gosh, it's September and I haven't written a blog for a while. This is probably not a bad thing as it means I've been busy, though not so busy that it's been counter-productive.
I've been working on a couple of guest blogs. The below was for the MS Society, and really came from a reflective place, thinking about what I wish I had known when I was newly-diagnosed with MS.

https://www.mssociety.org.uk/care-and-support/online-community/community-blog/5-tips-for-newly-diagnosed-msers

I have also written a guest blog for the next issue of New Pathways magazine for MS UK, which will be released on 1st October. In it, I talk about the small changes I made whilst on holiday to ensure that I paced myself but still had an excellent one.

In the middle of writing the guest blogs, I went on holiday with my family for the first time in three years, and it was delightful! In fact, the MS Society picture shows me on the cliffs of a bay in Dorset.

I've been working on a few blog pos…

Do I Identify as Disabled?

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Last night, I dreamt I was in heels. They say dreams are a clever way to deal with unresolved emotions. I haven't worn heels in a few years, though last year I invested in some boots with a tall heel.  I occasionally get them out and look at them longingly. Just to caveat this, I don't have a boot fetish, it's just that I do miss having the option of wearing heels. Due to my lack of balance, my penchant for falling, and for wandering into people and trees, this is no longer possible.

Feeling and being disabled are sometimes separate things. Four years ago, I gave a talk about MS to my department. I remember telling my colleagues that whilst I recognised MS as a disability, I didn't feel disabled. As you can imagine, this different perspective opened a few eyes. 

Fast forward a couple of years, when symptoms have crept up in a way they never have before, and I would most definitely identify as disabled. A week ago, I asked my Twitter family whether they followed the ident…

Managing Children & Anxiety Around Our Chronic Illness

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One of the most simultaneously exciting and frightening things in life is being a parent. Nothing makes your heart soar more than seeing your child achieve; nothing drives your heart to your mouth quicker than when they are fearless.

For the most part, my parenting is like that of any other. Yet parents with chronic illness know that this creates an extra level of complexity. When do we tell our children about our condition? How do we handle questions? What do we do with the guilt of not always being able to do the things that other parents appear to do without limitations?

I've spoken about chronic illness parenting guilt before. It's a unique emotion. This particular kind of guilt makes you doubt yourself. The biggest concern I have as a parent is am I doing it right? I always say it would be good if nature allowed us to give birth to our child, followed by a manual! My second concern as a parent is one specific to having a chronic illness: is my child worrying about me?

The la…

Why People Don't Offer me Their Seat

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In the late 1980s, a well known pop duo sang "She's got the look". This song came to mind as I stood at the bus stop waiting for my bus which is notoriously devious in not announcing itself via the destination board. Why was this song in my head? Because today, silly me, I don't look sick. 
Apparently, if you wear a stonking, great badge saying 'Please offer me a seat', this actually means you must be absolutely fine, as well as having a predilection for the colour blue or large badges, or playing an April Fool's joke on anyone you meet. This badge seemingly provides an excuse to raise the newspaper over your face or stare intently out of a dirty window at traffic. If you're not doing any of the above, you're suddenly finding the floor extremely interesting. In fact, I'm pretty sure that someone once even had a pretend conversation on their phone to avoid the overwhelming awkwardness.
Are we having a rant today? Yes, we bloody are! There, I'…

When Having Invisible Symptoms is Useful

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How can having an invisible symptom be useful, I hear you ask. I'm going to start this off by being very clear that I'm not suggesting that being invisible in itself is useful or that those of us with chronic illness are deliberately hiding our symptoms. Nor am I encouraging people not to share their condition with anyone. 

On this World MS Day, social media will undoubtedly be flooded by posts about invisible symptoms. Rightly so, as it's important for non-MSers to understand these symptoms, and perhaps for others in chronic illness communities to see the relative similarities and differences in our conditions.  I'd like to do something different, however. I would like to look at when having symptoms that are invisible, may be advantageous.
When we're not readySometimes, we just aren't ready to show our hand. This is true of lots of situations. As a member of various online forums, I see people who have just started dating someone and are unsure about telling t…