Month: Aug 2018

The come down.

I’m suffering from writer’s block at the moment. I’ve just not really had much to say or write, but I’ve also been enjoying spending my time reading A LOT! I’ve also been starting to read a bit more about Reiki Healing as I’m so excited to share that all being well, I’ll be doing my Level One attunement on the 15th September!

One of the books I have recently finished reading. I can highly recommend it. It was brilliant!

I know that many people who follow my blog are people who want to know what to expect from going through Lemtrada. With this in mind, I thought I’d give a summary of how things have gone for me over the last couple of months. Trying to get a picture from my other blogs probably gives you more of an idea on how my mood has fluctuated more than anything! I’m moving towards a better head space now which means I’m way better positioned to collate my thoughts!

So, where am I eleven weeks on, apart from sat eating a veggie burger with sweet potato fries and suffering from writer’s block?

The intense “MS fatigue” I was suffering in the run up to  treatment has more or less lifted. I can’t say that there aren’t days when it’s not there but it had got to the point that I was suffering every single day. I’m still shattered though and sleeping ridiculous amounts. I think this is just because my body is working hard to increase the bit in my blood that Lemtrada wiped out. It’s different to MS fatigue. I actually do feel refreshed when I wake up in the morning and getting ready for the day doesn’t feel like the plight it was becoming. As a result of my exhaustion not being even close to what it was, the Cog Fog isn’t so bad. Sure, words are falling out my head like it’s going out of fashion, but I’m definitely finding it easier to remain present in a conversation.

I can count on less than two hands the symptoms I’ve had to deal with as a result of going through treatment. And most have worn off now. For three weeks after I felt like I was coming down with flu and slept a lot. By five weeks after (just before I was going back to work), I started suffering with a bit of anxiety, but that disappeared by being open about it and having Reiki therapy. I’ve had real issues with stabilising my body temperature, but since the weather has cooled down, I feel loads better. It’s difficult to tell if that’s MS in general, Lemtrada, the fact that it’s been disgustingly hot and we’re ill equipped to deal with it in the UK, or a combination of all three. I suspect the latter. I was struggling with an iffy gut every other day at first, but my stomach of steel seems to slowly be working it’s way back to normal!

Then there was the itchy scalp. This still hasn’t really let up and I’ve tried changing shampoo and all sorts. My hairdresser said he can’t see a rash and my scalp looks in great condition. Whatever it is, the occasional anti-histamine when required seems to keep it under control.

​​Finally, there’s my legs. This is really hit and miss. Today, I’ve had no bother from the pain in my ankle in spite of the fact that I’ve been dragged round a car boot sale in the pouring rain. On another day however, with no explanation, it’ll reduce me to tears because the pain is so bad. Or the weakness means I can’t face using the stairs. I’ve started parking on the site car park at work which is making a difference to both the comfort levels of my legs, but also in managing my energy levels. I feel at the end of the day like I’ve got enough energy to go to the gym after work. Or at least I would have if I didn’t have the pain in my leg! I really want to get back to the gym actually. It’s getting me down a little at the moment that I’m in too much pain to go. I’m hoping to try going this week though on the basis that I might be surprised by what I can do.But that’s it.

Tiredness. Dodgy Gut. Flu-like. Anxiety. Unmanageable body temperature. Unreliable legs. Itchy Scalp.

That’s really not a lot is it? Not in the grand scheme of things.

It was getting me down though. To the point that there was a suggestion that maybe I’m depressed. I categorically disagree with this. I’m miserable, sure. I’m not disputing that but do you know what? I have every bloody right to be. I’ve been diagnosed with MS. I challenge you to find someone who wouldn’t feel at least a little bit pissed off!

I think what’s triggered it, is now that I’m through the diagnosis and the treatment, everything has just…stopped I suppose. It’s almost a come down. Not that I was on a high, but I can’t really find the right words to explain it. Things have changed though. Nobody is calling me brave or inspirational anymore so I don’t have to worry about living up to that (I’m ok with this by the way! I’ve said before, it gets kinda annoying because I’m only doing what anyone else would do in my shoes). But life is more or less back to normal now. What that means is it’s time for me to come to terms with everything. I’ve found the trick is just not think about it and to bury my head in the sand but I’m not sure that’s productive. I’m now allowing myself to feel my emotions whether that’s anger, sadness or confusion. A sense of “why me?” This means that emotionally I’m on quite the roller coaster right now. This could be being mistaken for depression.

Just on this point, I’m pretty sure that the place that the suggestion came from was 100% a place of love. I’m grateful for being looked out for like that actually. I’m not dismissing it entirely as depression is a well documented symptom of MS. I just don’t think it’s something I’m suffering from right now. I think I’m just fed up and need to work on my self-care to get me out of that place.

On an unrelated note, someone who didn’t yet know about my diagnosis found out last week. And he gave me the most honest response I’ve heard from anyone. He looked at me and just said “I’m so sorry to hear that Jo. That’s shit innit?” He said the one thing that couldn’t be closer to the truth and he didn’t run scared from it. It was genuinely music to my ears, to get such the response that I got. There was no trying to empathise, and there was no sympathy either. He just said exactly what it is. It just felt so real.

Maybe we can all learn a thing or two from that.

Coffee and Cake is always wondeful therapy!

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.

Reading in Heels – June Review

Sleep has been evading me a little of late. It could be the heat. It could be after effects of treatment. It could even just be the after effects of being off work and not having as much of a routine as I’d like. Whatever the answer, this box was on paper, everything I needed it to be.

Opening the box, it SMELT like sleep and recovery. Inside, there was two bags of Sleep Tight Tea from T2 Tea. I’m into herbal and fruit tea in a big way at the moment, so this little offering was gratefully received. The flavour is really delicate, so quite possibly not for everyone, but I really enjoyed it.

There was a balm, from Made By Coopers, which is multi functional, helping with both beauty and sleep. The pure oil relaxing candle from Hopping Hair Candles  smells beautiful as well and really helped in chilling me out and getting me to unwind.

The sweet treat this month were the yummiest little biscuits from Chins Kitchen. These little Rose and Cardamom biscuits were everything I would never choose but they were so so good!

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This month’s read was “Bad Romance” by Emily Hill. I’m afraid this one only earned itself about 1.5 stars from me. Here’s my GoodReads review:

“My attention span is struggling as of late, so although I don’t consider myself a reader of short stories, this seemed like a brilliant pick for me.

I really really wanted to like it. But I just didn’t get it. Had this been a full length book I definitely would have given up before I’d even made it halfway. The saving grace of this book was that despite the constant lack of engagement with each story, I still desperately thought that “maybe this next one will be the one.”

I guess the genre could be described as black comedy. And in fairness, I did occasionally respond to said comedy and I really found myself laughing. But not that often.

I also couldn’t connect on any level with the characters. I felt that I should have. I got the feeling I was similar in age to them. But I just didn’t like them. And that could have been because we had such few pages to get to know them.

The stories finished abruptly and I found myself having to re-read parts as I wasn’t entirely sure what I’d just read.

Overall, I kind of found this one a confusing read that I really struggled to enjoy. Having said that, I still insisted on following through to the end and finishing it so it can’t have been THAT bad.”

This is absolutely what I love about the concept of Reading in Heels though. In spite of that, I’m still glad that I got that book. I wouldn’t pick it in a month of Sunday’s so it was still so refreshing to read something that wasn’t my typical choice, even if it wasn’t for me.

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.