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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'...


Wednesday, 13 June 2018

Total remission! (I think...)

This is just a quick blog today, as I'm doing this from my phone.

I had an MRI scan last week, one with contrast dye, and one without. Today I saw my neurologist, and he said that he couldn't see any new lesions (like last time), and he couldn't see any active lesions (I am unsure what he meant here, as there is a bit of a language barrier, he may have just meant no new lesions).

He showed me last year's scan and this years, and I noticed that the inflammation in one has totally gone down!

I won't know the actual results until he has had a chance to analyse it properly, and then I'll get a letter detailing it. However, for now, things are looking positive. My blood results are normal, and the only downside is catching every bug going, but I can live with that.

The treatment has been a success, and I start a new job in under two weeks time too. I nearly need to pinch myself, as it almost doesn't seem real, and I still feel a bit on edge like it won't last. Maybe with my life getting back on track I can learn to be happy, and that it's ok to be so.

Until next time...


Jo xx

Tuesday, 17 April 2018

My two year chemoversary....

Facebook has many uses, which is probably why a lot of people have stuck with it over the years, despite their data breaches. It can make life easier, like being reminded of friend's birthdays or inviting people to an event, rather than sending out actual invitations. One feature which is rarely useful, but does often provide me with entertainment from time to time, is Facebook memories. Usually I'm reminded of something dumb I wrote in 2007, but I was reminded on the 11th of April that it was two years since my first treatment of Lemtrada. The official name for this is Alemtuzumab, but this was rebranded when it was found that this drug was useful for MS sufferers, it also went up ridiculously in price, so much so that I'd be inclined to rename Lemtrada to 'Kaching!'

Anyway, before I go off on a rant about pharma and how immoral I think they can be, the treatment I had is a type of chemo, as mentioned in previous blog posts. I think of it as a wonder drug, and my life is unrecognisable from what it was two years ago. Two years ago just before my treatment I was at the tail end if an awful relapse. I didn't see how this new drug would help me that much, although my hopes were small, such as gaining the feeling back in my right hand side, and being less exhausted than usual.

I immediately noticed changes, but this was probably due to the steroids as they help with relapses. Then when the steroids left my system, despite feeling like I had a month long hangover, I noticed changes in gaining some feeling back in my right hand side, and being able to walk without tripping up over my own feet (I looked drunk whilst being totally sober). My cognitive function had also improved slightly, which is the symptom that has always bothered me, as it has made me feel pretty thick over the years.

This was only half of the treatment, so I went in for the second half in May/June last year over three days. I didn't notice a huge difference until the autumn, when my mood had vastly improved, and I felt genuinely positive, happy even. The fatigue was still there, then I think late October to early November I felt 90% there, fatigue disipated. I still feel good, and I can't quite believe it. I sometimes expect to wake up having a massive relapse, or wake up from a blissful dream, realising that nothing has changed.

I get the odd symptom, a bit of tingling in my hand or knee, for maybe 1 minute here and there. Interestingly it only seems to be when I'm in a humid environment, being in a hot, dry climate is definitely best for me, so my plans to leave the UK eventually are still on the horizon.

I think maybe having MS has changed me in a way. Although I've always thought that I've never taken things for granted, when your health fails you, that's when you truly realise how you need to make the most of your life (or I did anyway). I hope that none of you have to find that out. This is why I'm so focused on making the most of things like the potential of living abroad, and completing my degree, which should help me in being able to live abroad. My treatment should last me for a long time. I may never need another treatment for MS, and if this is the case then the only one I would want would be to repair nerve damage caused by relapses.

I'm a big believer that medicine helps save and improve lives, for instance I'm totally anti the anti-vaccine crowd. Mainly because one of my Dad's brothers died as a kid from complications with measles aged just 10, and the MMR vaccine wasn't around then, which could have prevented him from falling unwell. Plus not being vaccinated, you can be an asymptomatic carrier (you feel fine, but carry the disease), and vulnerable people such as the elderly or immune-compromised can fall seriously ill as a result.

Sorry for seemingly going off topic, but this is linked. I believe that medicine heals, but I also believe that diet and exercise can help complement treatments, so they can work alongside each other. I know that some people claim to have cured their MS with diet alone, but I think maybe they were lucky, and maybe their version of the disease wasn't as aggressive as it is for others.

Last year I had a huge overhaul of my diet. The previous year in hospital my blood sugars were through the roof (probably due to the steroids), but I thought that I'd lessen the risk by trying to lose at least two stone before my next treatment in hospital. I weighed about 12.5 stone when I decided to lose weight, having previously lost just over a stone doing the 5:2 diet (in 2011 when I lost my job I went from around 11.5 stone to 13 stone something in around six months!)

So, in February 2017 I did something called The 8 Week Blood Sugar Diet. It was low carb, low sugar, and 800 calories a day for 8 weeks. It was tough, but I over lost a stone and a half in ten weeks (I did an extra two weeks). I then lost another stone over a few months just by following the principles. In the latter part of 2017 I went back to 5:2 (500 calories two days per week), and 16:8 half the week (eating everything within an 8 hour window). I'm now in the nines, and a healthy weight. I had a few people giving me passive aggressive compliments, such as: 'Oh you look great! But I think that being in the nines is too skinny', 'You look amazing, but guys prefer girls with a bit of meat on them', but I won't let these comments put me off. I think that my current diet (aside from the odd glass of wine or bit of chocolate), definitely helps me in keeping my MS at bay. As does CBD oil, but this is expensive, and also not legal in every country in the world. I also exercise most days now: three times a week is a half hour HIIT workout, and two days a week is Yoga/Pilates, and I can notice the difference in my muscles already.

It's weird to think how far I have come in the past two years, and the fact that I'm planning on going Down Under for at least a year shows that my treatment (and perhaps to a lesser extent my diet), has been a success. I've been busy lately studying (of course), as well as organising a gig for my friends from Australia, and I'm due to be starting as a Volunteer Administrator for a local hospice. Life is busy, but life is good. It can be too easy to forget about the MS sometimes, but as much as I wish that it was never a part of my life, I think to be totally ignorant would be detrimental to my health.

Anyway, I'll leave you with this: Stem-cell lite?, a link to an article from someone else who has had this treatment. Health and happiness to you all.


Jo xx

Tuesday, 3 April 2018

Dreaming of summer time...

So, I've been back on UK soil for just over five weeks now, and my holiday to Australia seems like it was a dream. I think the thought of having a two week summer in the middle of winter has confused the hell out of my body. It took me a few weeks to adjust, mainly because winter came back with a vengeance since I've been back (almost like a big "fu*k you" to me for trying to avoid the winter). I wish I could have stayed for my whole visa duration of three months and travelled around, thus avoiding the winter, but I do have my working holiday there to look forward to, so I shouldn't complain too much!

My thoughts have nearly been consumed with my plans for when I eventually go away, and one thing which I thought would be difficult is getting my monthly blood tests done, but I've found a private healthcare company which offer pathology tests all over Australia. I just pay online, they send me a form, then I book my appointment, have the test, and have the results emailed to me. I then email the MS Therapy Team back in the UK for my medical record. If any result is out of the ordinary, I see a doctor and go from there.

One thing which I thought I had sorted was whether I could stay for a second year should I want to. I wrongly assumed that because I've applied for my first working holiday visa before my 31st birthday (although only just), that I could definitely apply for a second year, despite the fact I'd be 32 at the time of needing a second year visa, but as long as I'd have completed regional work. Well, this is probably the first time I've been told that I'm too old for something (something I should get used to from now on I guess!) So, I have one guaranteed year, which is great. Now I have to get creative with ideas for staying a second year should I want to. The following shows how I maybe overthink things...but given the fact that I'm intending on leaving the UK permanently, it's hardly surprising!

So, my original idea was two years in Australia, which would be a mix of farm work, six months other work and three months travelling in the first year, while also continuing with my distance degree full-time. Then I thought as I was going for two years I could study for my degree part-time instead, so I'd have more spare time to enjoy myself. My second year I could work as needed, and continue with my distance degree, then when that was finished, get my CELTA TEFL qualification, and seek a Short-Term Skilled Migration Visa to teach English if I wanted to stay longer.

As I now have one year there, it would be better to study for my distance degree full-time, as well as working full-time (maybe this makes me crazy). The plus side would be that I would have my BA Hons next year, and if I study for my CELTA TEFL, I could then apply for a Short-Term Skilled Migration Visa to stay a bit longer. I could be fairly settled, going where the work is, finish my degree, then have a few months of travelling and one month of CELTA TEFL study time at the end.

Another advantage of having both my degree and my CELTA TEFL is that I could seek employment in another country, maybe Japan or New Zealand (for example), and gain some valuable experience teaching for a year, and save like hell. Then maybe look into studying for a formal teaching qualification somewhere, which would open up more opportunities. For instance if I chose to study for this in Australia, this would be a year long, and would give me the chance of applying for a Skilled Visa there, or I could train elsewhere if I wanted to go somewhere totally new.

I did consider not studying at all and enjoying my year there, then getting a student visa for a year to finish my degree, but international student fees are $30k+ AUS per academic year, so I there is no way I could save this amount in my first year AND live, let alone enjoy myself. If I could figure out a way to make this work, this would be ideal (small lottery win maybe?!)

Essentially I just need to focus on my one year there. I want to experience what I wasn't able to in my twenties due to illness, but at the same time I need to also think about my future. So, for now it's looking like I will be working my arse off, and enjoying three months off at the end, which isn't bad at all really. There is a chance that the Working Holiday Visa age might be extended to 35, so if this were to happen whilst I am out there, maybe regional work to extend my stay could be an option.

I don't know for certain when I will be leaving the UK, as I can't book anything until I've seen my neurologist in June, so I'll keep researching for now. I have a job interview this week too, which if I get the job will be great for my CV and bank balance. In the meantime I need to save up, book my ticket, then sell most of my stuff, so all I have is a suitcase, my guitar and a laptop. So, not much to do then!

As there isn't much I can do now for my adventure, I'm chasing up a couple of things with my neurologist - my yearly MRI scan still hasn't been booked, so I'll feel a bit happier when I have the letter for that. Plus, I have a medical driving licence which needs to be renewed every three years, and he still hasn't sent this back to the DVLA (my licence expires in five days). I can still drive on my expired licence apparently, but only at my own discretion. It's not like I get sudden attacks of MS (which would make it dangerous for me to drive if that was the case), so I'm not worried. As my health is so much better than it was, maybe I will get a longer licence? So maybe it could be worth the wait.

Until next time...


Jo xx

Tuesday, 6 March 2018

Good health is now 90% loaded...

Well I'm getting back on track after my trip down under, and despite my wish to evade winter, that didn't happen (dammit), but getting 2.5 weeks of uninterrupted vitamin d, I can hardly complain (but I'm British, and I love the sun, so I might well do). I had an amazing time with some awesome people - spending time with friends, and making new ones. I also developed a bit of a Tim Tam addiction that I'm trying to curb (I have 3 packets in my cupboard for friends, and I've managed not to break into them so far...)

I caught the flu on one of my flights back home, so coupled with jet-lag, I hibernated most of last week. While I'm happy with that than the alternative (being outside in 0c), I have noticed a changed in my mood. Some of it has to do with the fact that I've been fighting off an illness, plus jet-lag, but some of it has to do with my sudden change in environment - swapping being outside for most of the day, to hibernating under a duvet with the blinds closed (I didn't want to be reminded of the snow, but maybe keeping them open would have been better in hindsight!) I bought a CD which reminds me of summer when I was 13/14, and is helping my mood somewhat ('MTV Rocks - Pop Punk vs The World'), and I'm enjoying it more than I thought I would!

Anyway, I'm so glad that I managed the journey there and back, plus being busy whilst I was there, I only had two days where I had around ten minutes or so of slight tingling in my hand, and that was it! Jo - 1. MS - 0. Ha.

Going away has further made me realise that I need to be living in a warm country, with low-humidity. So this is next on my agenda. I've applied for my Working Holiday Visa for Australia, and it's been granted (already!) It isn't a done deal, as I may change my mind, and although I know that Portugal would be so much easier to get to, I want to experience living somewhere new for a while, having already spent a large chunk of time in Portugal. I'll have to time my travelling around Australia well, and avoid the particularly humid parts at certain times of the year though (or maybe now my health is so much better, humidity may not affect me as much as it used to).

I was under the impression that in June I may have the all-clear re MS progression, as my neuro said that if my next scan is clear, he could discharge me to my GP. This could mean that I wouldn't need to see a neurologist, and maybe not have further blood tests. However, the MS therapy team that I deal with reckon that what my neuro said is wrong, re not having to see him again, and I will definitely need to have blood tests for a few more years (maybe then no more neuro visits). My MS Nurse has been very supportive saying that I should go if I can make it work, and the MS Therapy team are more cautious (although understandable as they're in charge of my care).

By the looks of it I may be able to get around it by paying to have a monthly blood test for the year that I'm away (as I'm not permanently emigrating yet), then have the results faxed to the MS Therapy team. They then contact me if there are any issues, and I then see the equivalent of a GP to arrange whatever needs to be arranged. I've found some options for insurance, although if I need to pay for anything relating to my monthly bloods, I have to pay for it (which at worst could mean issues with the thyroid, at best a vitamin deficiency). One insurance covers pre-existing conditions after a year, if I decided to stay for longer, I could see a neuro there after a year, but I would see him before I go.

I would probably have the same issues wherever I decided to move to, and there is always a way round things, so if I'm 100% on going, I will find a way! I would have liked to have travelled round Aus/NZ in my early twenties, but then MS hit, so I couldn't. I realise that I am incredibly lucky to even be considering this, but now that I am 90% there health wise, I'm going to take every opportunity I can. While simultaneously living parts of my twenties I missed out on, and figuring out what I want for my future now that I'm in my thirties. I also plan on carrying on with my studies whilst I'm abroad, so I can still be awarded my degree next year. Just as well I thrive on being busy!

In the meantime, I need to look into part-time work, and plotting my escape, wherever it is that I will end up. I also have my studies to finish for the academic year (just over two months left of this module, thank f**k!) I want to be in a band, but I'll stick to playing guitar and bass by myself for now until I know what I'm doing.

Anyway, until next time...


Jo xx

Tuesday, 30 January 2018

No creativity allowed...

In my last blog I wrote about being focused (or in my case my lack of focus!) Since then, I've gained some focus, and quit my Maths course to concentrate on my degree, which I think is the best decision for now.

I don't need the Maths qualification right now, and I already have a pass grade (just not the best pass grade), it just might be useful in the future, and only if I decide I want to teach in an international or secondary school. I've also been thinking of potential career paths, which I'm leaving open for now, but I think something in the vein of Copy Editing and/or Copy Writing; maybe TEFL (Teaching English as a Foreign Language). Maybe both could feature alongside each other if I end up being self-employed.

My MS has been mostly behaving itself lately, and I realise now that I found it much easier to blog here when I was unwell, as I had something to write about, much like I find creativity can be inspired by anger, frustration, happiness or some unexplainable reason (when inspiration strikes). So maybe my blogs aren't as interesting now, but I'll take that and being healthy any day. Plus, this is really only for me to exercise some writing practice and clear my mind - no matter how boring the subject matter.

The score I received on my last assignment, although awful, has spurred me on to do better next time, and the title for this post is inspired by my last blog. I can be quite stubborn, and if I'm told that I can't do something, the rebel within responds with a: 'Fuck you, yes I can!' Much like the day of my driving test in '09, where my driving instructor had told me the day before that he thought I should cancel my test, as I wasn't up to scratch. I disagreed and told him that I'd do it anyway, as it was paid for.

I met my instructor the next morning, got into his car without saying much, and I drove near-perfectly. When it came to the test I thought I had failed, due to my knock in confidence the day before, but I carried on and did my best. When I found out I had passed, in shock I asked the examiner if I could hug him, I then realised that this was completely inappropriate, and I didn't (especially given the shocked expression on his face - I don't think he was someone who liked to be touched).

Now because I want to prove I can do better, I feel motivated to write something that appeases my tutor and the university. I think that now I can write a so-called Creative Writing essay, without too much creativity involved. In my last assignment, I was too overwhelmed with the wide array of different techniques to write my story, as were many others on my course who also received disappointing scores. I've identified a couple of techniques that should work with the poem I have to write, so hopefully simplicity will win here. I'm glad of all the notes I've written in my diary since October, and the daily haikus I was recommended to write, as this has given me some material to use. I think that the poem will be about winter, as I've written a lot about that (funnily enough).

Music wise, I had a good drumming session on Thursday, which shows I'm improving. I also noticed that the drum pedal I was using wasn't working properly (not that I should blame the equipment too much, haha), and that coupled with weakness on my right-hand side was a bad combo. I don't think I'll be drumming in a band any time soon, but I'll keep at it, and keep the regular slot for practice. I was toying with the idea of getting an electronic drum kit, which would be perfect, as I could practice every day. The only problem is living in a flat, but the woman who lives below me is rarely there, so I could probably get away with it (the only loud thing here would be the drum pedal).

I'm much better at guitar that I thought I would be, especially since due to the MS I couldn't feel my hands intermittently, I feel so lucky not to have lost this skill (it would be frustrating after playing regularly from the age of twelve). I honestly thought that as I took to drumming much quicker than I did guitar, that drumming would be easier. However, with muscle memory, it almost feels like I haven't had much of a break guitar wise - although I am a bit rusty. I would love to get better with some lead, and plan on practising this again. I was taught to play 'TV Eye' and 'Smokestack Lightning' before as starting points for lead, so I'll see how I get on with that. I realise that music wise I don't sound too focused, but I think that while figuring out what I want to do, I need to explore the possibilities. I would love to be in a band doing Replacements-esque and Bash & Pop style music - poppy with a punk edge to it. So, we'll see what happens.

A week tomorrow I leave for Australia (getting there on the Friday - I'm sure the time difference is going to confuse me), which I'm excited for. The long journey will be tiring, but I'm glad of having a stop at a hotel half-way, so hopefully I shouldn't be too much like a zombie when I turn up! I might post before then, although I have that assignment to write and a job application to prepare, so I'll see.

Until next time...


Jo x

Saturday, 20 January 2018

Focus Jo, focus...

The ability to focus on one thing at a time is definitely a skill which can evade me from time to time. I work well under pressure and pay attention to detail when needed, but from my teenage years to now, taking on too much has always been my downfall.

I wasn't going to write a blog this week, but then I had my marked assignment back from my tutor, and to be totally frank, it was shit. I needed to digest my thoughts on it, hence this blog post. When I saw the result, I have to admit that I was a bit upset at first, as I thought I had done well. I am also not well this week, so being exhausted and feeling like my brain has been replaced by cotton wool, isn't helping me in being totally rational.

After re-reading the assessment summary a few times, and digesting the comments from my tutor, it isn't all bad. My tutor gave me the top of the bare pass bracket, due to the "imaginative ambition and clear effort" in my writing (so essentially what I would term a marginal fail - one more mark and I would have been in the next bracket dammit). Then he goes on to say that for further assignments, to try and be less imaginative (ironic for a CREATIVE writing module so you would think!) Essentially I need to try and think more about the techniques used, and concentrate less about the idea. I thought I had done this with this assignment, but looking back on it, I let my creativity run away with me.

My idea involved a man who seemed to have amnesia, and was trying to figure out what had happened, and how he had arrived at that location. Certain things triggered retrospective memories/flashbacks, which would give a clue to what had happened, and then there was a twist near the end when he had finally realised how he had got there. I took The Sopranos way out in the end (a sudden unexplained ending), but only because I had to due to the word count. I edited the piece numerous times, but I couldn't take much more out without ruining the narrative.

Ten years ago editing would have been an alien concept to me, being a writer, I used find it hard cutting work down. Studying the sub-editing course helped me be a bit more ruthless with my editing. That said, I think that my problem here was that I should have realised this idea was too complicated to complete in 2,200 words, and thought of something else, but having scrapped an earlier idea, I stuck with this (tunnel vision). My tutor also didn't like that this was through the viewpoint of mainly just one person, with the other characters being in the flashbacks. There was a third person omniscient narrator narrating the story, rather than it being in the first person (a third person omniscient is a point of view where the narrator knows all the thoughts, actions, and feelings of all characters. The author may also move from character to character to show how each one contributes to the plot).

I think a boring idea, with all of the required techniques would have worked better - such as: two people in a location, the narrator describes the scenery, some dialogue, something minor happens, then there is a neat and tidy resolution - the end.

My next assignment is on poetry (groan), and despite hating writing poetry, I think that having little interest in it may help be obtain a decent mark, as my pesky imagination won't run away with me.

My last assignment has also made me focus on what I want to write about in my end of module assessment, and I think I'm going to be choosing the life writing option, as writing blogs and non-fiction articles seems to be a strength of mine. I don't like writing short stories, as they're too short for me to fully explore an idea. I have a few ideas of a novel that I'd like to write one day, but I imagine this will take me years to write, and I can't see me starting it any time soon. Choosing my final option also means that I will probably choose poetry again for my fourth assignment, as for my end of module assessment, I have to stay away from ideas that I have already touched on in previous assignments. Which does unfortunately mean one potential short-story for assignment five (unless I discover a hidden talent for poetry!)

Gaining some focus is never bad thing, despite how you might get there. I think that my decision to put my Maths course on the back-burner is definitely a good one; I would rather do well in this university module, rather than doing ok in both, but not achieving my full potential. I am tempted to study a bit of Maths on the side, and then cram for the exams in May once uni is over for the school year, but I will have a think about that.

I remember being sixteen and having two jobs, whilst studying full time, being in a band, and having a full social life. I would only have two full days off in the month. I would work cleaning a supermarket from 6am - 8am six days per week, and every other Sunday from 8am - 10am. College was 9am - 5pm. I had coursework to complete when I got home, as well as guitar practice, band practice, exercising, and socialising was thrown into the mix. Then I also had a Saturday afternoon job, so I'd get home from the first job, sleep, back out again, then into Brighton in the evening to the pub. Even reading that back makes me feel exhausted.

There wasn't even a reason for me working so much, other than I wanted money and I like to keep busy. It didn't last long, and I was burnt out, so I took to having one job during the evenings in the week. I think that working so much previously may have triggered problems with my health that lead to me being diagnosed with MS, the perfect storm, as they say.

Again four years later, I was working full-time in a call centre, as well as working overtime on Saturdays, and being in three bands, as well as having a social life. Over time the bands disappeared, and then by the time I was diagnosed, I was forced to calm down. However, even now I can still have a tendency to do too much, recently I think that it has something to do with the feeling that I have to make up for lost time, after being so unwell for a while.

Two sides of me clash now, practical Jo and impulsive Jo. I would love to save up, drop everything, and travel the world, but I also need to think about the long-term at the same time, and getting my studies completed (I still have to decide on whether to study for a TEFL, Proofreading, or a Copywriting and Copy Editing qualification). I think my compromise of getting my studies done, whilst fitting in small bursts of travelling can work though. I'm even applying for a part-time job, which will enable me to work from home, still have time for studying, and time to be creative too. That's if I get it, which I doubt.

I think that in relation to my current uni module, removing the creativity part to an extent will help me focus on passing the module (and being done with it). I can save my creativity for my spare time. Any time I have studied anything creative it hasn't gone well. Like when I went to music college for four months when I was 17, or when I started an English Literature module. I'll be keeping creativity and studying separate from now on.

Recently, I've got back into playing guitar and bass, and playing drums again. I realise that this definitely is not being focused, but I think that testing the water to see what I want to stick at doesn't hurt. I've been frustrated with the drumming part, as my MS has made my right side weaker from my last big relapse, and as mentioned in a previous blog post, it's been harder to hit the drums hard or properly (hopefully this will change). I was worried that I was having a ghosting relapse, but it turns out I have a virus, which has flared up my symptoms. Not that I like being unwell, but at least it is just a virus!

Getting to the point in trying to be more focused, I'll leave it at that for now!


Jo x

Friday, 12 January 2018

Decluttering my mind...or something.

So we're nearly half-way through January already - which I'm pretty happy about, as January is such a drag! I hope that you've had a good start to the year, and if you haven't I hope that everything will improve for you soon, (I know that there are a few of you who have been having an especially tough time lately too).

I hate complaining about trivial things, and despite not being totally content with what I'm currently doing with my life (that's the impatient side of my personality nagging at me), I'm happy - things have certainly been much worse. In fact, the only thing that I have to complain about is some ghosting MS symptoms (this usually around the time of year when I would relapse - so fingers crossed I don't). The ghosting symptoms are mainly a weaker right side, which I only really notice when I drum.

I decided to take up drumming again, as musically this is what comes naturally to me, and learning to play guitar & bass took a lot of practice - not that I'm giving up on them. Singing was just so I didn't have to look for a singer in my old band, and the other time it was just an excuse to be in another band! In a way drumming is musical therapy at the moment, forcing me to exercise the side which is weaker. I'm finding it frustrating, as I'm not as good as I usually would be (plus I am my own worst critic), but that spurs me on more to improve. I've even had a stab at drumming at home, with a make-shift drum kit, which is anything I can find that I can bash with my drum sticks that makes a noise, and doesn't piss off the neighbours! Although I think getting an electronic kit so I can practice every day is on the horizon. Practice, practice, practice...

In reference to my last blog, I managed to summon some forced creativity for my creative writing essay, and I even got quite into writing it in the end. I could have done with five hundred more words or so to be totally happy with it, but I always overthink things, so for a university essay, it was fine. This blog is definitely my own creative writing outlet in a way, even if this blog isn't that creative, it's like clearing the clutter from my mind so I can get on with other things.

I've been unhappy with the university module I've been studying for a while now, as well as my Maths GCSE. I've decided though that I need to focus more on my English Degree as maybe the Maths GCSE is getting in the way (and making me stressed). Studying for both just isn't working out brilliantly. I'm doing fine time wise with the English module, but I don't think that the Maths classes are benefiting me. I seem to revert back to my scared fifteen year old self, and go totally blank when asked a question, which makes me doubt myself further in the class.

I also don't need the Maths qualification, but it would make things much easier once I have my BA and TEFL qualifications, if I ever wanted to work in an international school, although I can get jobs elsewhere. I'm thinking of seeing if I can study on my own terms at home (practising lots of past exam papers would help), and booking into the exams in June anyway, just to see if I can do it.

The module I'm doing at the moment for my degree is a bit alien to me, as it is so subjective, and everything depends on whether the tutor likes my writing or not. I guess that I need to try and not worry about it too much, and get it done (it'll be over in May, thankfully!) If I concentrate less on the Maths side of things, it will calm me down a bit, as I can focus. Plus I want to keep up with actual language studies, in preparation for October - especially the grammar module for my final year! Eek. There will be more silly terms like Derivational Morphemes...yep, I thought so (Derivational what?)

Not that I am wishing the year away, but come June time, I will have the module completed, maybe have taken my Maths exams, and hopefully have the all clear MS wise (I say 'ish' here as I'm not cured, but no active MS is the next best thing). I'm hoping to look for some part-time work around then, and finish the final year of my degree in the autumn.

In the meantime, I have a huge trip planned for February, as I'm off down under for two and a bit weeks - Perth mainly, and a visit to Melbourne. I did mean to take a similar trip a few years back (West Coast USA, NZ, and Aus), but I was too unwell and I had to cancel, so this is also a big middle finger up to the MS.

I'm planning it so I can sleep half-way in Dubai, then sleep as soon as I get to Oz, so hopefully I won't feel too wiped out when I get there. I can't wait. It sure beats freezing my arse off here!

Anyway, that's enough from me.


Jo x

Sunday, 7 January 2018

When inspiration doesn't strike!

First of all, happy 2018, and I hope that the first week of January hasn't been too much of a drag for you. January seems to be the longest month (at least in this cold, drizzly corner of the world), but on the plus side, the days seem to be getting longer now, and it is light at 5pm. Summer is on its way (maybe I'm being overly positive here!)

I've found that writing in this blog helps to get my creativity flowing, which I really need at the moment, as I'm having to force come creativity out for my Creative Writing module for uni. I see creativity as an organic, natural process, and when inspiration strikes, I can write something which I am proud of or pick up my guitar and try to work out a song. Having to write something in a Creative Writing module is kind of ironic, as I can't force it, and the process seems wrong.

I have to write a 2,200 word short story, which if I were to do this my way, I'd write out a basic plot, think of some techniques to bring the story to life, write a draft, and edit the piece until it looked good. As this is a university assignment, there are narrative techniques that I have to include, so I can get a good mark. Including these terms then makes me think too much about the plot, and have I included enough of these techniques, or even too many. I have a rough idea for a story, which the first half is just frankly total rubbish! Back to square one.

As I'm so used to writing an essay where certain terms have to be included, I think that the only way to approach this story is to look at it like a normal assignment. This will take the creative aspect out of it, but should ensure that I've included what the tutor wants. Then maybe on an edit, I can add a bit of creative flair to it. I'm not enjoying writing this way, but I keep thinking that in just over 4 months I will be done with it!

On the plus side, some of the writing tips I learned early on in the module I find quite helpful, such as practising free writing (just writing and seeing where it goes), writing a diary (I just take notes of my day and my surroundings, great for later writing material), and bizarrely, writing a daily Haiku! The theory being that because you are so restricted by the 5-7-5 word count, that you have to be disciplined in the language you use. A lot of mine from the past few months seem to revolve around it being winter, and me being cold, a couple about being in the USA, a couple about being hungover, and some where it sounds like a simplified version of my diary. Although the time in October when the UK went orange from a giant dust cloud also features (I won't bore you with any of these).

Anyway, I'm sure that in a years time when I'm learning complicated grammatical terms, and probably cursing it, I may be wishing that I was studying this module again!

I have managed to be creative on my own terms this week though, in getting behind a drum kit for the first time in years. I was OK, but my stamina was crap in comparison to how I was before, so hopefully I'll get better as I practice more. Next practice is on Thursday, but in the meantime I want to get creative with finding ways to practice at home, as practising most days is key.

That's it from me before I go on too much!


Jo xx

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.


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, clich├ęs 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.


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...


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.


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...