More days like that please.

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. 

Everyday for the rest of my life.

I really do try to keep this blog positive, but it’s only fair that I talk about my bad days. It wouldn’t be right for me to give this false impression that I breeze through everything to cries of “you’re so strong” or “you’re so positive!”

This evening I have had a complete meltdown. I’ve tried to hold it in but that’s not helpful for me really is it?

Over the last few months every other night or so, particularly if I’ve been on my feet a lot throughout the day, I’ve been getting pain in my left thigh. It’s a burning pain, that I can’t quite describe. It’s not unbearable pain, but it’s certainly unpleasant.  

A couple of paracetamol later, a few squirts of CBD oil and a massage on it from Dave and it has eased up. It’ll be gone in the morning. But that won’t stop it coming back tomorrow or the day after. Or the day after that and the day after that.

Then it hit me. I’m probably going to have this pain every single day for the rest of my life. Or every other day. 

I cried my eyes out. What else is there to do? I feel better for it, but it doesn’t fix it. The pain will still come back tomorrow. 

I can’t fault the amazing treatment that I’ve had. Hopefully it’ll stop any further relapses and progression but it won’t stop what I already deal with. 

Today, I am not ok. But tomorrow is another day, and hopefully a brighter one.

The Authentic Me 

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! 

On my soapbox. Literally. (Part 2) 

Before reading, if you missed Part 1 you can catch up here! It’s also important to note that the topic of this blog is focussed on Relapsing Remitting MS.

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The day after my previous blog about Corrie, I was reading some spoilers (one of my favourite past times!) so I knew that Johnny becoming unwell was imminent.

During Friday’s episode, following being caught having kidnapped baby Suzie, we found Johnny in hospital. He’s not doing so well. He’s not doing well because he’s not been taking his medication for his MS for weeks. And this is where I think Corrie have got it a little wrong. 

It’s great that Corrie are finally remembering to do something with it, but I feel the need to clear up a couple of “misrepresentations”. 

Misrepresentation One: Johnny is only having a relapse (new symptoms) because he’s stopped taking his medication.

This is inaccurate. It’s not entirely clear what medication Johnny is on, but it’s easy to work out he’s on a daily self-administered medication rather than something like Lemtrada (which if you’re a regular reader, you’ll know is how I’m managing my MS). 

No medication is proven to completely stop relapses. The only thing it will do is slow them right down i.e. reduce the frequency in varying degrees of success. That means you can still have a relapse regardless of whether you take your medication or not. Of course, it is more likely that you will have a relapse if you don’t take your medication, but the reality is, no medication is 100% effective.

Misrepresentation Two: Johnny experiences no  MS related pain or problems as long as he takes his medication. When he’s between relapses, he’s completely fine.

Again, this isn’t a fair portrayal of MS. Once you’ve had a relapse and got yourself a few new symptoms, they never really 100% leave you. It’s rare to be symptom free. The extremity of it usually eases significantly after a relapse, but depending on what it is and how it affects you, it lingers. 

For example, my legs have “tingled” for eight years. When it first started, it was an awful numb feeling through my entire  body from the waist down. I had no sensation. Since that relapse, sometimes it can be all the way up to the tops of my legs and even into my lower back. Most of the time it’s a light tingle I barely notice, that doesn’t go further than between my feet and my lower leg. At other times it can be on the verge of pain. Heat can be a factor in making it “flare” as can tiredness or picking up infections. Oh and you guessed it, stress (amongst a whole bunch of other things).

It could be argued that Johnny has clinically isolated MS or it’s not that active or serious. But if that was the case, chances are he wouldn’t be medicating in the first place. It just doesn’t add up.

I get it must be hard to explain an invisible illness. How do you portray something that nobody can see? There are ways. People could simply ask Johnny how he is from time to time and he could complain about an invisible symptom. He could have the occasional bit of poor balance or walk with a limp. 

I’ve said it before and I’ll say it again. Soaps are well placed to raise awareness on all issues, I just wish that when they do give somebody something that’s a lifelong condition, they do more than just remembering to portray it when it suits them, or it fits with the storyline.

Hidden.

Shift.ms have worked with directors to produce this short film (10 mins ish). 

The story is of a girl who is experiencing the hidden symptoms of MS. She’s not diagnosed and the doctors say there’s nothing wrong with her.

Her next door neighbour however is diagnosed with MS, and her son spots the girl struggling and asks his mum to speak with her. Once she knows she has MS she’s able to manage the “beast” that she’s dealing with.

The scene with the stairs is a great visualisation of what it can feel like trying to make it upstairs sometimes, and the struggling with the wrists when the mother is working on her laptop. You also see the mum zone out of the conversation with her son. All of these things really resonated with me.

If you’ve got 10 minutes to spare, it’s definitely worth a watch.