Jenny Hello everyone! I’ve been out of the loop recently in regards to blogging and social media and I’m trying to work out what has been stopping me. I have to admit that I have been feeling like I’ve slightly lost my way with blogging…
The Start
I can’t believe that I started this blog 5 years ago now. Back then, my physical MS symptoms were really starting to come to the forefront and were beginning to have an impact on my life. However, I still had two kids in primary school, I was working for the NHS, I was married and I was managing. Managing my symptoms through diet and lifestyle, eating well and going to the gym. Mental health wasn’t too much of an issue and I still had a pretty positive outlook on the whole.
Now…
Fast forward 5 years and there have been many changes. My health has impacted my work (now medically retired from the NHS), my marriage (I’m separated) and my attitude (not so happy-go-lucky). My kids are the one constant, though they seem to have morphed into a style-conscious tween and a tall, largely monosyllabic teenager!
In regards to blogging, I still find it a lifesaver in terms of getting my thoughts out (I also journal at times), but I am aware that, compared to the past, my posts can be pretty maudlin and depressing. I think that I am conscious of the whole MS community when I write and I also follow some fantastic bloggers and social media accounts of people, many of whom who are earlier in their ‘MS journey’ than I am (for want of a better phrase). Regardless, I love following others with MS as it helps me to feel not-so-alone and it is great to have chronic illness online friends – they just ‘get it’.
I was diagnosed with my chronic illness at a time when they didn’t give DMDs to those diagnosed with MS as a child – I was 15 – and I then went so long during the early part of my adulthood without relapses that I never pushed for them. Now, I am secondary progressive at age 43. I am so aware that my symptoms and progression can be scary to those newly diagnosed or to those with symptoms that they feel able to manage well. I am very conscious that I don’t want to be a moaner but, at the same time, I want this to be a place where I can record my true feelings about what it is like living with advanced MS.
Read More: I am One of the Forgotten Many: Living with SPMS
The reality is, for me, it has got harder… a lot. And, yes, I do still try and be proactive and be as healthy as I can be with MS – but I am also finding it harder and harder when my body reacts the way that it does and I am the main person looking after my kids (and cats!) and my home. Trying to keep useful and to earn a bit of money through a few hours a week of work also makes it difficult, it just saps what little energy I have.
I think my blog needs to naturally find its way to being one that advocates for awareness of chronic illness, advanced MS and disability. I need to record how difficult life can be when trying to maintain normalcy (work, social relationships and family) in a society that is not geared up for disabled people and health needs to be prioritised. Trying to find the balance between wanting to feel like a helpful member of society (which I try and do through my work) whilst doing other stuff too can be… too much. I could do it all a few years ago, when I first started to blog, but not so much now.
I need to be aware that I may lose some readership of my blog if I emphasise the difficult nature of increasing disability. But then, the initial point of this blog was to get my thoughts out and really it still is. If blogging helps me to work through those thoughts, surely that can only help myself, and perhaps others, in the long run?
Anyway, a random one today for my first blog in a little while, but I’m glad to get it all out!
Really hoping that everyone reading is well and staying safe.
Love and light
Your story needs to be told.
I often feel amazed that anyone bothers to read what I write I find it so damn dark and depressing. But the truth is it’s the only thing that helps me. And somehow, miraculously, I’m told it helps others too. Your story needs to be told. I hope you keep telling it. ♥️
Thank you so much Beth, it helps me so much to read your blogs, I hope that mine can be just as good. Big hugs xx
Excellent thoughts 😎👍🏼
Blogging is a therapeutic exercise.
I try to mix the reality posts with cat pictures or silly stuff or YouTube videos.
Best Wishes 🙏🏼😻
Fun to go back and marvel at what You wrote and when.
It is a diary.
Others with Chronic Illness Want to hear the Down and Dirty.
They’re not alone 😎
Thanks so much Mary, yes it is great to have this ‘online diary’. Cat videos are the best – loving ‘the dodo’ on YouTube for a bit of cat relaxation 🙂 Sending hugs x
It is hard to be positive when you have progressive multiple sclerosis. Every day there is a new crisis. I am in final stages. Sadly I am in good health. I can only my right hand and arm. I am totally dependent on my two caretakers. I am fortunate enough to have long-term health insurance and savings.
Being positive, if it makes you feel better, is great. For me it is a chore.. I know people don’t want to hear that I cannot scratch middle of my back or move my right toe. But it is the truth.
This weekend both of my regular aids where away. I was by myself for 15-18 hours a day. Crisis
Thanks so much for your comment, Suzanne, I am so sorry to hear about your struggle. Please know that I am thinking of you. xx
I found myself in exactly this place 3yrs ago. My writing changed as my symptom sevirity changed. Although I was and am still positive I felt it was important to be authentic about what living with MS is in the progressive stage. My cognivitive state just hasn’t allowed me to do that. I still miss it. I still have hope that one day I’ll return.
It’s always good to hear from you. Keep sharing your journey.
Even if I start from a better position, and I am alot older, I am thankful just to read somewhere about a situation like ours… My MS has been very much ok to manage during the years. Got treatment 20 years ago, have had some good years, but now the good years are over, and SPMS has taken me on a slooping trip. The work-from-home & meet noone except close family situation came as a helper, but now it’s time to return to work, and I am someone else. So please keep up the blog when possible, we all think of you, and we will feel we are not alone.
Firstly, Happy Blogiversary – 5 years is an amazing milestone!
You’ve certainly had a lot happen in that time, and looking back can’t be easy. As for the blog, I’ve always enjoyed every one of your posts, and I know I’m not alone in there. But there’s definitely some pressure to not be too dark and maudlin, even if it’s reality, even if that’s how you’re feeling. The odd posts are okay, but there’s an unwritten thing to not do it too much because people want to be inspired and uplifted.
Nonsense.
People identify with the grim reality, the struggles, the truth of what you’re going through and what you’re feeling. Always write what you want. It’s lovely to think about your audience, but the ones that matter will enjoy whatever you write and will gain something from it regardless, so write for your own desires first and foremost, especially if you’ve felt a little out of the loop with blogging.
We love you Jen and we want to read what you want to write, and there will be benefit to those in the chronic illness community, the MSers and the general public in what you share 💜💙💚💛🧡
Caz xx
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