It’s getting to that time of year again when you start to reflect on the last 12 months. It was no exception at this month’s Red Tent on Tuesday. For those unfamiliar, Red Tent is a women’s gathering on or around the New Moon. It’s … Continue reading A Thank You Letter to MS
I didn’t grow up in a religious family. Growing up, about as religious as I got was being sent off to Sunday school every Sunday morning. I don’t really recall anything particularly resonating with me and I guess that is reflected in the fact that … Continue reading Finding Faith #1
Reading back my last couple of posts have made me feel really sad. I’ve obviously not been in the greatest place in recent weeks. In spite of the amazing self love summit that I attended which really did leave me buzzing for at least a week after, things just haven’t felt right for me.
Tuesday was a bit of a turning point for me though. I had my second blood test done and it presented me with a bit of an opportunity to just “offload” a little. And I am so glad that I did. Firstly, being asked to list all of your current symptoms was quite humbling. A list of five, which aren’t really that big a deal certainly put some perspective on things. The nurse that I saw told me that there was a tablet she could ask my GP to prescribe for me that would tackle the pain in my ankle (which hasn’t let up), the itchy scalp, my up and down temperature and the thigh pain. Possibly even help to lift my mood a little.
It feels weird to accept medication. I rarely even reach for the pain killers when I have a headache, but if it can help all of those things, I’m game. Although I’m still awaiting confirmation that my GP knows to prescribe it to me, it feels like a weight off my shoulders just to know that there’s something that can give me a little relief.
Honestly though, my mind has been heading into dark places over the last week or two. It’s not being back at work. I’m happy to be back actually. No, it’s about the pain in my ankle. I recall, somewhere some years ago a similar pain. Back then, of course I didn’t know it was MS and even now I’m only just making the connection. I probably put it down to dancing the night away in cheap high heels. You know it’s no good for you. I don’t remember it ever being this painful and unrelenting though. Certainly not enough to give me an occasional limp.
I was warned that post Lemtrada, because my body has had a bit of a battering and it will take quite some time to recover, some of my old symptoms would resurface. What nobody warned me of, was that there was a chance they would come back worse than when I first had them. But that seems to be a common occurrence. I didn’t know that. Lemtrada has also made me all kinds of irrational, so obviously I started to fear all sorts. As it’s taken so long to diagnose my MS I wondered, is there a chance it’s been misdiagnosed as relapsing, and is actually secondary progressive? I feel more or less comforted that this is highly unlikely, having spoken to others that have experienced worse symptoms than the original relapse.
On top of all of that, the irrational mood? The spontaneous crying? Generally feeling pretty miserable? All comes with the territory but I’m assured, it does eventually lift.
And I’ll tell you what’s helping my mood lift. Autumn is definitely on its way! I could practically smell it yesterday morning. The slight chill in the air, dew on the cars and the sun a lot lower. All that’s missing is a pumpkin spice latte from Starbucks!
Thinking about how much I love Autumn, made me start reflecting on what else I love. What else fills me up? What makes my soul happy? What is it that I need from a self-care point of view? I’ve accepted that for the next couple of years things are going to be up and down. That sounds defeatist, but I see it as a pragmatic approach. I’m going to do everything in my power to keep a smile on my face and make myself feel good.
I love writing, so starting this blog has been a huge thing to keep me happy and I have some great ideas of how I can branch out with it. I’m really keen to share the stories of other MSers. I tell you time and time again that it affects us all differently, so coming soon, I plan on sharing interviews with others affected by MS.
Through this digital age we find ourselves in, I have realised that I no longer read anymore. When I was a kid, in the school holidays I’d be at the library every other day getting a new haul. I’d complete the summer reading challenge several times over. But now there’s always a Netflix series to watch, a social media notification to respond to or my lives have refilled on whatever mindless game I’m playing. So less screen time for me, in order to give me more time to get lost in a book, which is all I ever did before those distractions existed.
I’m contemplating participating in “Scroll free September”, but depriving myself seems like an extreme thing to do. I’ve realised that I’m so all or nothing about everything and because of that, it always ends up being unsustainable. I end up trying to do something positive in my life and it actually ends up making me unhappy, stressed or left feeling like a failure. What I’d rather do is set some principles around how I use my phone. I’m thinking along the lines of “no phones after 9pm”. That kind of thing. Restricting Netflix binges to a couple of episodes a night. Nobody likes to admit it, but it’s only when you really take a critical eye to yourself that you see how addicted you are to your smartphone. I want my smart phone to add to my life and be useful. Not something that takes over my life.
I LOVE music. Any music. But I’ve realised how much calmer and in tune with myself I am when I listen to classical piano. More of that please.
I love being crafty, and I love being warm. So I’m going to finish my patchwork blanket. I’m so close to it being completed so that has got to be an absolute priority.
And finally, I love learning. I’ve had a couple of Udemy courses sat on the back burner for a while, so I’m going to pick those up once I’ve finished my blanket. I need to get better at doing one thing at a time and following through.
But most of all, I need to get better at doing more of the things that make me happy.
We all should.
I’m really conscious that I’ve not posted for almost a week, and not since my meltdown.
So to confirm, I’m ok. Just about. Ironically after my hysteria of the pain never leaving me, I’ve not had bad “night time leg pain” since. I think the temperature dropping has done me the absolute world of good. I just feel more comfortable. Not all the aches and pains are gone and my ankle is giving me a quite a bit of hassle today but for the most part, I’m ok
On late Friday afternoon I ventured down to London to attend Mel Wells’ Self Love Summit which was quite frankly the best thing I’ve done in a while. I’m experiencing a spiritual awakening of sorts and all the signs for me to attend were there. I was offered a free ticket the week prior, the Hilton Hotel opposite the venue was 41,000 points on their loyalty scheme (I had 41,086 in my account) and the money I’d claimed through my healthcare plan for staying in hospital covered the cost of the train ticket TO THE PENNY! Add to that, during a Reiki healing therapy session a couple of weeks ago, my therapist told me I just needed a lot of love. I kind of dismissed this at the time. I’m happy in my relationship and I’m happy with my friendships. I only considered at a later date that maybe it was a bit of self-love that I needed!
The day itself was incredible, and rather than writing it all up myself, if you’re interested in knowing a bit more about these events I’d like to share the blogs of a couple of absolutely wonderful women I’ve been writing to (I mean Snail Mail!) for some time, and have now had the pleasure of meeting!
I was staying in the same hotel as Laura on the night before the Summit so had the chance to get to know her, and it was so brilliant. She’s an awesome girl and I really feel that this is the start of a beautiful friendship. Read more here.
Becky also has a blog, which is raw and honest. And quite hard hitting. She is incredible. Her blog is truly worth a read as she tells her story and she does it so well. She is the bravest soul I’ve ever met. She’s gone off piste with her blog though for her latest post, and wrote about the Summit which you can find here.
My only key addition to this, is that for the first time since being diagnosed with MS, I didn’t think about the fact that I had it once. More days like that please.
N.B in case you listen to what my dear friend Clare says, no it’s not a Cult 😂 Just a bunch of women trying to find the best version of themselves, whilst also empowering one another.
Tomorrow night, I’m heading down to London on my own. I’m staying in a Hilton (thanks to the copious amount of points I acquire through staying away for work), and on Saturday, I am attending a Self Love Summit, hosted by Mel Wells.
If you read the “off-topic” posts on my blog, you’ll know that last year I read Mel’s book, “The Goddess Revolution.” And it was life changing. Years of yo-yo dieting ended and I started to accept me for who I am. That’s a journey that I’m still on, but as part of that journey, there was the option for me to go to the Summit.
At the time of getting tickets, I didn’t know when I was going to be getting MS treatment, or where I would be at in my recovery. I’d more or less written it off and that was that. Admittedly, I was getting a bit of FOMO, but I also knew regardless of that I needed to prioritise ME.
But on Sunday just gone, a ticket was going for free. With a quick check on train prices and seeing if I had enough hotel points to cover the cost of the hotel (London ones at short notice are generally not very cheap!) I realised that going to The Summit was something that I could make happen. I snapped up that free ticket and tomorrow my adventure begins.
The Summit is billed as “revealing the most unapologetic, untamed version of you.” Or as I like to refer to it, as the authentic version of me.
Empowering women such as Megan Jayne Crabbe and Rebecca Campball will be guest speaking at the event, helping to motivate, inspire and teach you to love yourself that little bit more.
Why do I just NEED to do this?
Well firstly, I deserve a treat after the year I’ve had, don’t you think? But mostly, I kind of feel like I’ve had an identity crisis of sorts. Trying to work out “who Jo is” and “who Jo is with MS” has sent me into a tail spin. Slowly realising it doesn’t actually matter and now trying to accept that, is something I’m working through. For the most part, I’ve got it sussed but I’m still having moments (albeit rarely) where it really hits like a train crash what’s happening to me. And it’s upsetting and scary.
I feel like this year has been the start of a real journey of personal growth and development, and going to the Self Love Summit will be a key part of that journey.
I’ll undoubtedly be back to share my experience after the event, but for now this is pretty much all I can tell you!
A few months ago I was in Sainsbury’s and picked up a book. It’s called “Five Minutes in the Morning – A Focus Journal”.
It’s usually priced at £10 but I was chuffed that it was only £4 (oh the joy of the January sale!)
The idea is, you take five minutes in the morning (duh!) to take stock of the day. Check in with yourself and how you’re feeling. Set some intentions for the day.
I’ve not used it really – it’s such a beautiful book, that I didn’t really want to write in it. I do like “workbook” style things though. I like having something to do.
Now even though this is designed for in the morning, I think I can get so much from this at any time of day.
So this evening I completed the first activity.
An exercise to start writing.
I was tasked with spending five minutes just writing about how I would introduce myself to somebody, and here’s what I wrote:
“Hi, I’m Joanna, but most people call me Jo. Except Dave. He calls me Joey. Dave is my other half and he very much completes me. We’ve been together for five years and have a little boxer doggy called Poppy who’s three.
In my spare time I enjoy reading and writing (I have a blog), and going to the gym. I’m a bit of a fadder, but that just means that I never get too bored!
In my spare time, I work for a big energy company in learning and development. I’ve done it for 13 years and genuinely love it!
I’m originally from Essex, but moved to Wigan 8 years ago, which is the best thing I’ve ever done.
I love letters and I currently have six pen pals, and the list is growing.”
I reflected on what I’d written. I feel it’s a fair insight into me but I’m also shocked by what I’d missed out. My love for gin, herbal tea and coffee is missing. Happily, I don’t let my recent diagnosis define me; I felt no need to mention that in my introduction.
After my first experience with this book, I’m definitely going to start using it more. If you’re interested, I managed to get another couple of them on Amazon for £4 – they’re easy to get your hands on. I gifted one to Kate as she shares a love for writing and I got the feeling she’d enjoy using a similar kind of book.
I think it’ll be really nice to dip in and out of occasionally, and give me a little pre-blog warm up or inspiration!
Have a go at this activity yourself – I’d love to read your five minute introductions.
This evening I have a rare Saturday night on my own. It’s funny how this feels like a real treat. Rewind 10 years and I’d be off out to get “on it”. Rewind 7 years and I would be crying into my ice cream in the style of Bridget Jones. Go back 5 years, in the very early days of my current relationship I would be feeling as though I had lost a right arm. Ghosts of boyfriends past haunting me, wondering what the hell is he going to be doing, or more accurately WHO the hell is he going to be doing?
Now, in a completely settled and trusting place with my partner, Dave, whilst I love him very very much, the prospect of a night in alone is “The Dream”.
I have friends that find my excitement at him going out strange. If we go back to me from 7 years ago, if asked, I’d agree. However as I’ve grown up, I’ve learned to value, and I mean REALLY value, that time where I hang out with no-one else, just me.
To be able to spend some time on my own is an absolute luxury for me; I work away a lot, and invariably I’m with colleagues. If I’m not with colleagues, sure I’m alone, but I’m not in “my space”. I’m stuck in a hotel room. Don’t get me wrong, they’re more often than not, very comfortable rooms, but it sure ain’t home! The rest of the time, Dave and I are pretty inseparable. Which is lovely, but there comes a point where I just need to be alone!
I can’t say I’ll be doing anything ground breaking. Probably just catching up on some washing, lighting a couple of candles and binge watching Grey’s Anatomy. There may be Yoga and there will definitely be meditation. Not rock ‘n’ roll, but it feels like some quality “Goddess Time” to me!
Hope you have a Saturday night which will be as fulfilling for you, as mine will be for me, whatever you do 🙂