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Lucky streak...

Lately I've been thinking about how lucky I am. As I've mentioned before, my last relapse was my worst yet, and the treatment I'...

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Friday, 22 December 2017

See you later 2017...

As it gets to the end of the year, some people like to reflect on the past twelve months, and some people think that as time is a man-made construct, it doesn't matter. For me, I'm going with the former, as this is one year where I have been pretty much relapse free, and I seem to be improving. This is a bit of a rambling blog without a theme, but I like to write like this sometimes, I guess it's more natural.

I feel for those who have had a shit year, and whose health and/or personal circumstances mean that they have had a bad time. I hated social media when I was going through a bad time, as it was a constant reminder on what I was missing out on, but then I had to remember that what we see on social media is a snapshot of someone's life, and it doesn't tell the whole story. Plus, social media seems pretty necessary these days - a bit like ten years ago when someone didn't have a mobile phone, if you don't have Facebook, etc, you're the odd one out.

When skim reading through my past blogs, I've realised how far I have come, since being diagnosed at 24, and being so positive, to when the positivity became a mask, and I lost interest in so much I used to enjoy. Echoing what I've mentioned in some recent blogs, now having had two rounds of Lemtrada, I'm happy, positive and hopeful. I never imagined the possibility of feeling this well, and I was on edge half expecting my bubble to burst, but I feel like I can be slightly more confident, and not worry so much anymore.

In previous years I might have focused on what I haven't done, or I would have tried to be positive but have what I haven't done on the back of my mind. This year I had my thirtieth birthday celebrations in Portugal, for a week of celebrating with two of my favourite people, then I celebrated with more of my favourites upon my return. I got a great mark on my end of module assessment, then a holiday in Devon with the family, a few hen parties and weddings, an awesome trip to the states, a couple of trips up north in the UK, getting back into an exercise regime, playing guitar again, then studying, studying and more studying of course. Me from two years ago wouldn't have been to handle this. I now average seven to eight hours of sleep a night (unless my insomnia returns), rather than my old twelve plus.

I came back from my birthday celebrations in Portugal wanting to totally write off my twenties, and I was probably the only one of my friends who was happy about being thirty. However I've decided since then that although the last years of my twenties weren't great, that I did have some good times, I can look back on my twenties and see how I've changed, and grown up!

Also, thanks to anyone that reads my ramblings. I recently discovered the stats button in the design area of my blog, and apparently the country where I have the most readers is Russia! I don't think I have any friends who live in Russia, so I'm guessing that there must be a link floating around on the internet somewhere.

Readers since this blog began:

:


The past month:



One thing that confused me and had me thinking 'Where the hell is Czechia? Maybe another name for the Czech Republic?!', and apparently the country changed its name last year, although even some citizens of Czechia/Czech Republic are unsure of what to call it: Czechia or Czech Republic

Anyway, Happy Christmas/Happy Holidays to you all, and here's to a happy and healthy 2018.

See you next year.

Ciao,

Jo xx

Wednesday, 13 December 2017

Winging it...

Yes, another blog. I thought that writing something would maybe help me realise what I've achieved today, before I try and sleep (hello sleeping pills).

Today was meant to be productive in terms of studying, and in some ways it was. For my English module I read the materials I was meant to, and I practised some creative writing exercises. Great, I could do that all day. Then comes the time to practice Maths, and I've somehow managed not to do much with it all day (I don't think that ten minutes on Algebraic Indices counts as much). Although I have honed a skill of mine today - procrastination.

All those jobs that could have waited, suddenly seemed more urgent, and have been done, although I imagine that I will find more pointless things which have a sudden urgency in the next week or so. I'm not usually this unfocused, and it happens to us all from time to time, but I seem to be worse recently, maybe it's the bitterly cold weather (I'm British, I pretty much have to complain about the weather at some point in the day!)

Talking of procrastinating, this also counts too right? Whoops, well in my defence I don't think that doing my Maths homework just after midnight would be very productive... Last week I managed some last minute revision before my Maths class, and I managed to wing it pretty well, but winging it won't help me pass my exams in June...

I won't post this one to Facebook, as I can bet that in the morning, this won't be something that I am happy with!

Good night xx

Thursday, 7 December 2017

Remission, clichés and being an insomniac...

It seems like that you can't get rid of me now, a relatively long time without any blog posts, and now many in the past few weeks.

Aside from seeing this as good writing practice, I find it quite therapeutic, as I always have too much going on in my mind, and it's good to get some of it down on virtual paper. I don't write this with the intention of people reading it, despite posting a link to this on Facebook. In fact, I mostly hate sharing my writing, as I think that there is something I could have done better, or the editor in me notices a style error, which really no one else will notice. Despite not enjoying sharing my writing, I think that it's necessary to get over my fear, especially with something that is as raw as a diary.

I don't want to mention my two hated words/one hated name (Multiple Sclerosis), but following on from last time, this is in a positive context. I saw my new neurologist yesterday, as my old one had moved to another hospital. I was a bit apprehensive, but thankfully he seems thorough, personable and pro-active. He did some reaction tests to see how my nerves react, and to see how my body is affected by the MS. My right side is still weaker than the left, which is to be expected after my big relapse last year.

Even though I already knew that my last MRI scan was stable, I wanted to know what that meant, and essentially it means I don't have any new lesions - which is a huge relief! He couldn't tell if the inflammation had gone down on my existing lesions, as I didn't have a scan with contrast dye, but to me it feels as though they have, due to how I feel . Not that I want to be cocky, as I still have the fear of the bastard MS reappearing with a bang as a big "fuck you" to me, although I think this is me just being paranoid, and maybe I just need to learn that it's okay to be happy.

My neurologist has referred me for my yearly MRI scan in June next year, with dye this time (that's if they can get a cannula in my crappy veins), then an appointment to see him soon after. He said that if it's still stable, and no new lesions, that I can be referred back to my GP, as there would be no disease activity, there would be nothing I'd need to see him about (just my MS therapy team for my monthly blood tests). I never would have thought that this would be possible. So fingers crossed for next June when maybe my Relapsing Remitting MS will actually be in remission...

One thing that I've been trying to treat is my insomnia, which comes and goes. My GP gave me some sleeping pills, but these are really only a temporary solution (and bad for my liver), so I've bought some Cannabis Oil capsules, supposedly bred with the THC (high) removed, so it'd be great if these can help.

I'm looking forward to the future, and I feel like I can make some plans now. I've even said that "I'm living in the moment" to friends, although I hate this cliche`, as it makes me sound like I'm confused or having a mid-life crisis, so maybe I need to think of a better term! I'm making tentative plans, whilst having fun, but that doesn't quite have the same ring to it!

Anyway, that's enough of me going on.

Ciao,

Jo xx

Wednesday, 29 November 2017

Blah blah blah...

I should be studying right now, but the writing exercises that I should be practicing aren't really yielding anything that I'm happy with. Much like with physical exercise, I find that with writing my mind needs a warm up, hence the reason for this blog.

I'm currently visiting my Dad in the Lake District, one of the most beautiful places in the UK, and it's easy to see how The Lakes have inspired many writers, such as Coleridge and Wordsworth. I don't like writing poems, so I won't be taking inspiration from those two (not that I know many of their works, aside from "Daffodills", which I really isn't my thing!)

One thing that could inspire me is the landscape and how it could work in a short story or a novel. Aside from being beautiful, this area of the country can be bitterly cold and bleak. Walkers often get lost on walks, some decide to try and climb a mountain on a whim and ill-prepared. I think that the most stupid story is a bunch of stoners who decided to climb Scafell Pike and get stoned at the top, then couldn't get down...yes really: Lake District stoners

Anyway, I think a thriller type novel or short story would fit in very well here, perhaps even a horror/crime type if I felt like it. My next assessment on my module is a short story, so I should get thinking soon!

Although I love writing, I'm also feeling creative musically, for the first time in a long time. I think that being happy and going to four gigs in the past month have helped eke out some inspiration. I can't decide what to do, and I guess that it's better to be a master of something, rather than a jack of all trades. However, I'm going to dust off my bass guitar, which I like to use to work out songs, then play a few covers I enjoy on the guitar, just to get a feel of what I want to do. I may even book the odd hour at a practice studio to get back into drumming again, which would be a good workout at the very least. I'm not sure about singing, but singing along to some songs on the guitar could be interesting (my voice is probably very rusty!)

Since coming back from the states, I've been dreaming about where to go next, and somewhere new and warm is on the agenda! Brr.

I think that this is my first blog post in years which is about general stuff in life, rather than MS, which is nice! I even hate to mention it now, but I thought that it was worth a mention, as this shows progress. I'm feeling so well that I'm kind of on edge expecting something to come along and screw it up...fingers crossed that it's just me being paranoid!

Until next time...

Ciao,

Jo xx

Friday, 24 November 2017

Lucky streak...

Lately I've been thinking about how lucky I am. As I've mentioned before, my last relapse was my worst yet, and the treatment I've had has seemingly stopped my MS in its tracks (not that I want to "tempt fate").

I was reading through my old blog posts the other day, and it made me sad - sad for how I used to feel. I also realised how I inadvertently put my blog in the MS blog niche. My blog even appears on a list online of MS blogs - which despite being flattered, hopefully one day I won't have a condition to write about!

I also watched a Channel 4 documentary last night titled "The Search for a Miracle Cure" (about media lawyer Mark Lewis who also has MS). This has to be the most depressing thing I have watched in a while. It brought back memories of how I was after my last relapse, and how my life really has changed since. Although I found the documentary depressing, I have to say that I really admire Mark's positivity and determination to fight this disease - it reminds me of my determination to be rid of this bastard condition.

For those who haven't read my blog before: I have relapsing remitting MS, so I have relapses of worsened symptoms, with some remission in between. Mark in the documentary has progressive MS, so with no remission in between. The treatment I had was a type of chemotherapy (not as aggressive as you would have with cancer, but aggressive enough to kill off part of my immune system), and not stem-cell treatment like some people think I have had. The treatment shown on the documentary is just stem cell treatment and no chemo, although there is a treatment where they combine chemo and stem-cell therapy called AHSCT which some people can get here on the NHS. The treatment on the documentary showed that it slowed the disease progression in some cases, but not all, so it had some positive outcomes.

I was diagnosed just over six years ago, when I was 24, and the day after I returned from a great holiday in the states. What a fuckin' bombshell. Then began the grieving process, and I became a bit reckless as I tried to numb my diagnosis. After a while I begrudgingly accepted the diagnosis, but I lost interest in anything I used to enjoy, like creating music, then I lost my job, and then I thought that was my life from then on. This treatment really has changed my life.

For the first time in a long time, I feel like myself. I get annoyed about the minor MS symptoms I have, but I'm in a lot less pain than I used to be, so I can brush it off. The dark monster that was my depression has cleared away now, which feels like the biggest relief. I have always tried to remain positive before my diagnosis, and then with being diagnosed, but a lot of me being happy before was a mask to the outside world. I feel like twenty year old Jo at thirty and a bit, but happier, calmer, older and perhaps a bit wiser?

I now have some days that I don't think about my illness, as it isn't a constant reminder anymore. I still have fatigue, but this is normal healthy tiredness, as opposed to exhausting MS fatigue. I'm not at a stage where I can work yet, but I am studying for my English Language degree, and for my Maths GCSE. I think if I continue to feel fairly well, maybe I can look into some part-time work in the spring. I want to see the outcome of next years MRI scan, which if this shows as still stable and no new lesions, then I will officially be in remission.

February coming around might make me feel on edge, as this will be the two year anniversary of the big one no.2, and nearly the four year anniversary of big one no.1. This year I had what I call a phantom relapse, a year to the day since my last big relapse, but it was so minor, I didn't even want to call it a relapse - the symptoms were like minor ghost symptoms.

In trials, some people who have had the same treatment as me, have never needed another, and some might have needed another after ten to fifteen years, and a small percentage have needed a third. I'm hoping that I'm not in the latter group, but if I do need a third to do the trick, so be it. If not, then I might not be 40-50+ until I need another treatment, which with the advancements they are already making with MS, maybe my next treatment will be a cure, and repair of my nerves.

After eleven years of being ill, it's now positivity all the way.

Until next time...

Jo xx

Channel 4 MS Documentary

Lemtrada - My treatment.

AHSCT

Tuesday, 19 September 2017

A letter from an inadvertent germophobe...

Hello again. I wish that there wasn't such a big gap since my last blog, but that seems to be normal with me these days! In my defence, this year has flown by, and I'm finding my feet with life again since having my treatment.

To update you all, not much has changed in my life overall. I'm still living in the same flat (and the neighbour from hell appears to be moving out...FINALLY!) I'm still studying for my English Language degree, but I didn't need to defer anything this year. I am now also studying for my GCSE in Maths, as I originally obtained an 'E', which is still technically a pass, but the equivalent to a 'C' grade would look better on my CV.

I had round two of chemo at the end of May/beginning of June, which went well. I had a month of feeling like crap, but I have been slowly recovering since. Now my main worry is colds, flu and infections. Every cold that I get seems to give me an infection. Despite this being annoying, I would trade it for being really ill with MS any day. Apparently it can take up to two years for my immune system to fully recover, which can also bring about other autoimmune conditions with it...but I won't think about that for now.

I must admit that I think the hesitation in updating my blog regularly (aside from sometimes being genuinely so tired that I could fall asleep in my dinner), is the negative press that sick and disabled people get. Especially the comments I see written online or what I overhear from people. If someone looks well, they must be well...apparently. Yes, I am much better than I was, but my MS is still there. Some days are worse than others, so my condition fluctuates. I almost feel guilty for living life and having fun sometimes, which is conflicting with myself in a weird way.

I went from a well paid job to being so unwell that I couldn't work, and losing my job, in under a year, which is pretty scary. It can (and does), happen to anyone. I felt vilified for having a serious and chronic health condition, with medical evidence not appeasing the DWP, having to undergo to a undignifying assessment. If we're able to work, the government promise us everything, make sure we don't have enough to achieve our dreams, and incite fear and hatred amongst the population, so that when they're at their worst, it feels like the shit on your shoe would be worth more.



Sounds depressing? Well my self-confidence has taken a battering with being unwell, and it takes a lot to have a genuine smile on my face, but I am getting there. I'm able to see more of my friends and family. I'm able to live my life a bit more, and I'm still getting better. I need to be patient, but hopefully I can finish my degree, teach English (TEFL), and be a proofreader. I would love to be more self-sufficient as I think that it would be a huge confidence boost.

Since having the treatment, I have turned into a bit of a germophobe. Flinching when someone coughs or sneezes and doesn't cover their mouth (disgusting).



I've been sneezed on a few times, which nearly sends me into a murderous rage (it is gross though right?!) I have a huge stock of Purell and my hands are dry from over-sanitising them, but considering that I had a constant cold from last September to this January, and countless chest, throat and sinus infections, I think that I can be excused. I always ask friends how they are, but I now have to ask for my own sake, without sounding like too much of an insensitive bitch.



I just hope that I don't turn into this...



Tiredness is now mostly actual tiredness, rather than MS fatigue (which is most certainly not just tiredness!) I had one very minor relapse in February, which was a year to the day since my last major relapse. I then thought I was having a relapse, the night before I was due to go away with my best friend - which turned out to be a bad infection, and I had to stay behind, but at least it wasn't a relapse!

So, comparing life to two years ago, it's definitely on the up. If someone could invent me an anti-bacterial everyday zorbing device, to protect me during winter, I'd be grateful ;-).



Until next time...

Jo.