Tag: multiple sclerosis

Autumn is coming.

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!

Photo Credit: Starbucks UK

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.

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One of the most beautiful pieces of music you could ever listen to

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.

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My blanket! Each patch is representative of one week in 2017, and each stripe is a day. I picked the colour based on my mood.

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.

You will not always be strong, but you can be brave.

For reasons that will become clear, this blog post wasn’t an easy write. I’m still not even sure I’ll press the publish button yet. We’ll see.
I’ve been back at work for two weeks now. I’m glad to be back (in spite of the anxiety I was feeling in the run up), though I’m still on my phased return. This is good – I’m definitely knackered by Thursday so not fully committing back to my full time hours yet is definitely something I need. I genuinely feel so blessed that I have such an amazing and understanding employer.

In recent weeks, I’ve been wondering what would happen if I decided that my job wasn’t right for me anymore. This isn’t unusual, ever since my diagnosis, I’ve thought at great length about my career options. What if I chose to go elsewhere? Would I find an employer as understanding, that would look after me as well? Or would I just end up a burden? If I was upfront and honest about having MS when I applied for a role at another organisation, would I end up somehow being shafted before I’d even got my foot in the door? You’d like to think that this stuff doesn’t happen in this day and age, but I’ve worked for the same company for 16 years and it terrifies me thinking about what could happen.

Anyway, you can probably see all this building up to a less than pretty state in my head. 

My head is a fucking jungle.

Honestly, since Friday I’m constantly on the brink of tears. And not because I went into meltdown thinking about my future! I’m fed up of this stupid bloody heat, I want to stop sweating. I have developed the itchiest scalp I’ve ever encountered and I can feel loads of small spots under my hair. And if I walk for more than five minutes, there is a pain in my right ankle that feels like someone is stabbing me with a burning knife. Which if I really deserve a treat, spreads up my entire leg. Yay!

Thing is, unless we’re REALLY close, if you ask me how I am, I’ll probably tell you I’m fine.

If you notice the slight limp I’ve developed on occasion, it’s unlikely I’ll tell you just how sore it is. I’ll probably brush it under the carpet. 

I’ve come to realise, that there’s a lot of pent up anger in me at the moment. That “why me?” anger that so far I’ve only experienced fleetingly, is here in full force. I feel emotionally vulnerable right now. And I think the spontaneous crying is because it helps me to release some of that anger. I feel great after a good cry. It’s like nothing has happened!

Ultimately, right now I’m just really bloody fed up. I’m not feeling very “people-y” and actually, I don’t even feel like slapping on the positive outlook I keep being complimented on.

I feel like the reality of my situation has hit me like a ton of bricks. I keep having to remind myself how much worse things could be. And they really could be. I have nothing terminal. I still have my mobility. I need to gain a little perspective. 

Before I stop writing, I need to share this. It landed in my mailbox this morning, and the timing was just so perfect. 

It 100% sums where my headspace is at right now.

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.