A cosy catch up...
Grab a cuppa. Come sit down with me. Grab a blanket. Get snuggly. Let’s have a catch up.
Hello all,
I’m back from my rest, kind of… I could tell I needed it as I was getting mouth ulcers, styes in my eye and a low grade fever. Anyone else have tell-tale signs that they are about to get under the weather or have a flare up?
Again, this article won’t be like the usual ones. I don’t have a fully formed article to present to you per say, but I’m working behind the scenes for future things don’t worry. Please hold steady. I did have one person unsubscribe last week soon after my ‘rest’ article was published, I don’t think they liked the idea of me having a rest? Unless it was just a coincidence, but it did make me chuckle. I think it was a little test from the universe to see if I really could rest without guilt, and to not take things so personally. I think I succeeded quite well. Go me.
There has been a definite change in the air here in England. I can feel the seasons starting to shift, not completely, but there are days it feels like autumn. There is a crossover happening. It goes between being hot and humid, clinging on to summer for dear life, and then there are days like today, the air turning cold and fresh. Windows are being shut. My favourite jumpers are being pulled from the back of the wardrobe. Musty blankets are being washed in preparation for the cosy season ahead. Looking out of my window right now, I can see the leaves are starting to crisp and turn orange at the edges of the trees. A few leaves are breaking off, surrendering themselves to the ground, kissing the exposed roots of the trees, already admitting it’s time to rest. The skies have been grey and full of electricity. Storms have been gathering strength. Rain clouds sighing, filling and releasing, refilling and releasing, breathing to the new seasons rhythm. I can sense a change within myself too. A longing to retreat. This Summer has been quite busy in some ways. A lot to process. But this time it’s not a longing to retreat out of fear or a way to avoid my problems. I want to retreat to be kind to myself. To allow time to contemplate. To gather strength. Learning how to create healthy boundaries. Time to allow ideas to generate. Learning to slow down because that’s where true magic happens, the real life that happens in-between the big events. But don't worry, that doesn't mean no writing!
As I write this, my concentration is broken by hail loudly declaring itself against my window and skylight. Maybe autumn is here for good after all…
So a little catch up… over the last week I had some great ideas for what I want to write about in future articles. It’s amazing what a little break away can do for your creativity. I need time to really decide which direction I want to take some of those ideas. Time to ponder and daydream on it first. I often need to remind myself that there’s no rush. A big part of writing is actually not writing, but allowing your imagination to play around with ideas first. I can often ‘write out’ whole paragraphs in my head before touching pen to paper. I find the best time for this is when I’m walking in nature, doing the washing up or having a bath/shower. How about you? When do your best ideas manifest themselves?
I also had some good news, that my colonoscopy appointment has FINALLY been booked and coming up this Friday (wish me luck). I never thought I would be excited about having this procedure done, it’s funny how life turns out isn’t it. I did not think my mid-thirties would include jumping around the kitchen with joy and relief at the thought of having to drink an inhuman amount of laxatives, but here we are. Hopefully this means I’m one step closer to being able to start my immunosuppressant drugs for the arthritis, and (maybe?) feeling a bit better? But starting this drug does mean I will have to put quite firm boundaries in place to protect my immune system. This will mean change, which can sometimes be uncomfortable, not only for me, but for those close to me. I will also need to get used to taking the drug itself (injections, ew) and it's possible side effects. Hence the need to retreat and gather strength for this transition. I will also write about my experience of all those things in future articles; the injections, specialist hospital appointments and boundary setting. Don’t worry, I won’t add too many gory details about the colonoscopy part. Unless you will find it helpful, then I’m an open book!
My husband and I also have another trip to Scotland planned for the autumn, which I’m super excited about. We are going back to the Cairngorms and we will also explore some of the Islands. We are of course travelling in our faithful VW campervan. Travelling with a chronic illness is always a little tricky, but I’m trying to let go of the idea of what a ‘perfect trip’ should look like. When I was well I would have written out a huge list of things we needed to tick off and see, but now we just go with the flow (my energy levels). Many days are now spent just sitting around looking at pretty scenery, which has been a real treat. We have the best conversations when we allow ourselves that space. We actually come home feeling restored, instead of depleted. I may also write about our campervan travels, with a chronic illness twist, if you would find this an interesting read?
I also wanted to say another huge thank you to everyone who has subscribed and to the dedicated readers who show up each week to read what little ol’ me has to say. I see you and hugely appreciate you. I have reached 78 subscribers and I’m so happy to have you all here. For me, it’s never been about the accumulation of subscribers ( I know, I know, everyone says that). But I came onto Substack because I made a pact with myself that I was going to write on here for at least 1 year, no matter what happened, or who showed up. Of course it’s lovely to know that my words resonate with some of you and I love the thought of providing some comfort to those going through a rough time. But I really wanted to prove to myself more than anything, that I could truly dedicate myself to something for a long period of time without giving up. That I would allow myself to do something creative because I enjoyed it, and not to see it through the lens of trying to be perfect or productive or ‘popular’. I always wanted to stay genuine and only write about what felt right. Not forcing myself into a certain box because that’s what everyone else was doing. In the past I had a habit of giving up too quickly on things, the perfectionist in me (my insecure part), wanted to be great at things immediately or I would get so frustrated. ‘I quit’ became quite the mantra for me. Don’t get me wrong, I’m glad I did say that to some things in my life (stupidly stressful jobs or relationships with toxic people), but other times I do regret giving up so quickly. If I had just given myself more time, more space, more encouragement, I could have achieved so much. But I’m a firm believer of, it’s never too late! I just subscribed to a lovely lady on Substack, who has just started to write on here in her 90’s!! How amazing is that?
Letting myself write has taught me so many valuable life lessons already. It’s taught me that it’s ok to be vulnerable and honest. That being true to yourself and your feelings actually brings people closer to you, it doesn’t scare them away. The right people anyway!
It’s taught me it’s ok not to be perfect, we are only human after all. People like authenticity.
It’s allowed me to make mistakes, try out new things, and to find out that this is where some of the greatest ideas come from. It’s not failure, it’s learning, exploring.
It’s ok to only write a little bit each day or when you feel up to it, this actually accumulates to huge amounts over time. Taking the pressure off yourself actually makes you MORE productive and you enjoy the process more. Win win.
You may think that everyone else says things better than you, or are way more interesting or more talented than you, but you still have a unique voice and gift to give to the world. No one else can be you. Staying genuine is scary. Not everyone will like you, but that’s ok. I’m starting to feel more at peace within myself now.
The sunshine is now poking it’s head out through the grey clouds. The hail has stopped, the winds are still strong but starting to slow. The crows are dancing on the exhalation of the storm. It always looks as if they ride the winds for fun. They swoop and dive and zoom around at breakneck speeds, with no particular direction in mind. They manage to dodge out of the way of my study window, just in the nick of time. Enough to cause me to flinch at my desk. They cackle together like a bunch of misfits. Egging each other on. Their little black feathers puff up as they sit in their rooftop rows, it looks like they’re wearing little leather jackets. They remind me of a biker gang, tormenting our town, but I don’t mind, I’m endlessly entertained with their mischief making. They remind me to smile on a near daily basis, and to not take life too seriously.
All this to say I’m happy I had a bit of a rest, and I’ve got some ideas of what to write going forwards and I do hope you enjoy them. I’m going to embrace the cosy season coming up, it feels like a great time to hunker down and get creative (and to watch Gilmore girls…. again). It’s a good time to look after myself, and to put some routines and rituals in place for comfort and healing (which is the theme to another article coming up).
So I hope you are all doing ok and managing to fit some rest in too? This time of year also means flu and cold season is right around the corner, so do look after yourself. Is is Autumn where you are in the world, or is it still hot? What is your favourite season? Does the weather impact your illness? I find Summer sucks for fatigue but great for stiff bones, and Winter sucks for stiff bones but better for fatigue. I need to find somewhere that is always Spring and Autumn 🤔 but preferably without the allergies of Spring and the dampness of Autumn. Does that place even exist…
See you all next week.
Lots of Love & hugs,
Amanda x
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That was good to read, a rest is always so important. I find that the telltale signs change but somehow I do notice.
About the immune supressing drugs, don't be put off by the injections. Do opt for the pen version, not the needle version. A pen is so easy, you will hardly notice it. Just a click and it's over. I have watched kids with diabetes using a pen with not a bother.
As for living with immune suppression, it was a small battle in my household but by now everybody knows how to keep the fridge clean, aka low-germ, how to store food stuff in closed containers, how not to leave damp sponges and icky washing-up brushes around and so on. Also, change your toothbrush more regularly and check your toes and feet for tiny cuts every so often.
My worst mistake was cuddling a toddler who felt "a bit under the weather" and both of us getting knocked down with scarlet fever as a result.
Good luck with the colonoscopy, the worst is the taste of the stuff, the rest is easy.
Hi Amanda, greetings from a fellow Brit appreciating the arrival of autumn this year. I used to love summer most but this year I have developed heat intolerance for the first time since the 80s/early 90s and that sucks. No more feeling good for me when the sun shines it seems.
I can always tell when I'm starting to crash because my allergies ramp up and I feel like I constantly have a cold. My digestive system starts to refuse to process anything and my central nervous system tips into sympathetic overdrive. My body fizzes with electricity it seems while at the same time being immobilised. Fun times!
I would personally love to hear about your camper van travels because it's something I am considering with my husband. We would still love to travel (we also have Scotland on our wish list) and we both love going to festivals and concerts but it's getting trickier now that I need a wheelchair to get there and can't camp in a tent any more. Travel tales from you would be most welcome 😊