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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, 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.

Ciao,

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!

Ciao,

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.

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.

Tuesday, 30 August 2016

Out with the old, in with the new v.2.

This was written in June, but for some reason the photos just refused to show up. This is now working (finally), and rather than procrastinate and edit this further, I'm just going to post this blog as it is.

I will be posting more soon (I promise!) This blog post is more the bare bones info of the treatment I had back in April, to give you some back ground info.

From needles:



To pills:



Now, Chemo (ugh, a cannula):



In my last blog, I mentioned how I'd stopped Gilenya so I could have Lemtrada, and hoped to start Lemtrada in February.

Gilenya had made my Lymph cell count too low for treatment (as it needs to be high enough before it gets obliterated by Lemtrada). I had what I consider a major relapse in February, as I woke up half paralyzed. but on my right hand side this time.

Thankfully, I managed to regain some movement after about half an hour of waking up, but I couldn't feel a thing, making walking or doing anything virtually impossible. Really, I should have had a wheelchair, but one won't fit comfortably in my flat (I wouldn't be able to fit it in the bathroom or anywhere), so any minimal walking to the toilet, etc, involved me watching my right side to move, and leaning on my stick in my left hand.

I still live in a first floor flat, with no lift, and was stuck in my flat for the best part of three weeks. I was prescribed steroids to help speed things up, which it did, but it also messed with my sleeping pattern, and kept me awake all night, as well as making me want to eat everything. After this, it was still extremely difficult to go down the stairs. Thankfully my Mum lives nearby and was able to help me with everything. I had a blood test to confirm that my Lymph cells had gone up, and they had (not surprising as they were attacking me), so treatment was confirmed for April. The council have also moved my priority banding up to the highest possible, although no suitable properties are available at the moment.

Since the relapse? Thankfully I started to recover, but as always after a relapse, I was majorly fatigued, and then I started Lemtrada - the wait seemed like an eternity! I was so worried of not being on any medication because of the relapse, that when I did start it was a huge relief.

I stayed in hospital for nearly a week for my treatment. We had intravenous steroids and anti-histamines first (anti-histamines to help with the horrible rash you can get), then the good stuff - Lemtrada aka Campath aka Alemtuzumab.

The steroids made me feel like superwoman, and forgetting that I hadn't really used my legs properly in months, I once jumped out of bed, only to fall on the floor. Sleeping was impossible, but as the steroids made me feel great, I didn't mind. The rash made me look like I should be in quarantine, but the rash wasn't as bad as I made it look.

For the first two weeks, I was shattered, but slowly I started to notice a marked improvement from before. I still get a numb hands from time to time, and I have a permanently numb right foot after my last relapse, which is also slightly dropped (I keep stumbling & catching my foot on things). However, I've had more energy, and been able to stick to plans. I am using my stick, but much less than before.

Overall, I think I've made the best decision. I am fatigued, but this could be from the treatment, as it's a form of Chemotherapy, and tough on the body. My liver did not like the treatment at first, and they nearly stopped my infusion (as the entire dead immune system has to be processed by the liver), but they went ahead in the end, as apparently it's normal for the Liver function to go up.

Going forward, I'm trying to do more exercise, mainly Pilates at the moment to get my strength up, and taking it easy, even if I don't want to.

I feel extremely lucky to have had the treatment, and think that the medical staff who looked after me were fantastic. Hopefully if the treatment continues to work, I'll be able to work again one day, and give something back into the system that helped me. It certainly beats injections, plus I don't need to remember to take a pill once a day. I have another treatment next year over three days as an outpatient, so I should have more of an idea if it's worked then.

I'll try and write in this more regularly, I've spend most of this year unwell or recovering so far, so fingers crossed the rest of 2016 will be different!

Jo xx

Tuesday, 26 May 2015

It's been a while...again.

Well happy 2015 to you all - I know this is a bit late in the year to be wishing this, but this is my first blog of the year!

I've noticed on the stats option in the design part of my account, that I seem to have a lot of readers in the Ukraine, which is great (hello to you!) However, I also noticed that the referring Urls seem a bit questionable (one of which has P0rn in the title), so goodness knows why my blog is being referred from there! Haha.

Anyway, things with me are still pretty much the same - I'm still exhausted & I'm still having cognitive issues, these both are my main obstacles in not being able to work. I've been off work for a year and two months so far!

I have noticed a difference with my medication, in that I have kept to more plans, but I still need my rest days in between (most days seem to be rest days though). Although I still get mixed days, where I might feel ok (for me), for one part, I could feel like shit on the next part, I do get whole days where I feel crap. It's disconcerting on the days I feel like I have some energy or my balance isn't as bad - as this is a rarity for me, there is a danger I can go overboard and be very unwell the next day or week.

Still, I'm trying my best to be the best that I can be. I'm going to start Pilates & Tai Chi at the MS Treatment Centre in Southwick - as this is for people with MS, I feel like I will be supported well & I don't need to keep up with the others. I also have some simple exercises that I can do at home - nothing strenuous by most peoples standards, but strenuous for me! I'm eating much better than I was, plenty of fish, fruit and vegetables - I thought that trying to emulate the diet I had when I lived in Portugal would work for me (minus all the alcohol of course!)

I feel like I'm doing all I possibly can at the moment, and although it's frustrating that I can't be "normal" (what I used to be pre-MS), I have been forced to accept my illness and diagnosis for what it is - a potentially disabling and debilitating disease, and adjusting my life around that for now.

I won't give up, and I don't have a defeatist attitude, who knows, I could be just going through a bad patch, and maybe this medication could be working its magic, and maybe I will get on to an even better medication that could transform my life. However, I have to be realistic amongst being positive, in what this disease has done to me, in the past year especially.

Last year was the worst year since being diagnosed - as I had my worst relapse so far, that stopped me working, and changed my life completely. I felt my most alone last year, and I now feel that I really can empathise with others who are house-bound (old and young alike). I was probably depressed, which didn't help (I say probably as I felt lower than low, but never got diagnosed, and I don't like to use the 'D' word lightly and potentially trivialise it!) There were times I was in so much pain, that I wouldn't have been bothered if I hadn't woken up the next morning. The pain was caused by spasms, and I found it hard to get hold of any decent painkillers to help - Co-Codamol didn't even touch it, plus it can only be taken for a few days in case you get addicted!

Life at the moment seems good though. It might not be "perfect", but when is it? I haven't had the dreaded MS hug for a while (spasms in my rib cage muscles - excruciating), and I even have a few trips planned. I think the latter is important, as the last few years have taught me, and last year especially, life is too unpredictable, and you need to squeeze as much enjoyment out of it as you can.

Well, that's it for now, I thought a catch-up blog was apt. Next time though, I will carry on with a blog based on adjusting to the social problems attributed to MS and other disabilities & illnesses.

Ciao for now...

Jo x

Thursday, 27 November 2014

A welcome distraction...

Hello again, I felt like posting a quick blog...just because (admittedly I am avoiding reading boring chapters in a Uni book, and making it much harder for myself, but hey, I seem to work better with tight deadlines!)

My medication seems to be working, albeit slowly, and I've been hampered by various Autumn/Winter bugs which are going around. I actually had two whole days where I felt happy AND healthy - believe me, that hasn't happened in about three years. The cold I had was fought off quickly (as usual), but I didn't get the usual MS related crap afterwards, which was just amazing (some minor fiery pins & needles on my face, but that is nothing). Then, of course, I sucummbed to a horrible virus which would not go, then I got Tonsillitis AGAIN! So now I'm feeling exhausted, but unable to sleep until the morning, which then of course goes round in a vicious circle, as I need to sleep into the afternoon.

I've found some good herbal sleeping pills though, which work well, so hopefully I'll be back on to a normal sleeping pattern soon.

I had a letter last week from the Occupational Health Company that my employer uses, which included a report from my Neurologist. Essentially they can't see me returning to work at all any time in the near future, and although some of my symptoms have subsided, they have had a lasting effect, so this could I could turn into Secondary-Progressive MS (although it might not) . I think to be honest, as my medication appears to be working, as my latest relapse wasn't as long as usual (painful, but only a few weeks), hopefully minimal damage will be done in the future, which hopefully means delaying the Secondary-Progressive stage, or not going on to it at all! (Wishful thinking!)

Anyway, all I can do is keep doing what I'm doing, which is eating better, taking my wide array of supplements, and keep up with the Physiotherapy.

Hopefully then I can recover somewhat, because if my muscles get some tone back, and are in good condition, then that will ease the fatigue, as I won't need to work as hard to get up out of a chair, or walk.

Cognitive function is a huge problem with going back to work too, as I need to be on the ball there (mistakes means breaches - if you work in the financial services, you'll know what these are!)I get a little window each day where I can think and speak reasonably well without it being too much of an effort, but it is unpredictable, and some days, I can't think well at all - much like my brain being replaced with cotton wool! When I do get the opportunity, I read or I do some of my part-time degree (how I am managaing I don't know!)

I will try and write again before Christmas...bye for now!

Sunday, 31 August 2014

Out with the old, and in with the new...

Out with the old



and in with the new…



Okay, so I used a huge cliché for the title of this blog, but it fits in with my life quite well at the moment.

I have been planning on writing this blog for nearly two months now, but I just haven’t got round to sitting down and writing it. I haven’t had a blog entry on here for a while, because I wanted to have something new and fresh to write about, rather than the same old crap (like moaning about the NHS for example, although there may be some of that in this blog entry!)

I have enough material to write this and another blog, so hopefully this will get me back into the habit of writing this more regularly.

I have been going on about getting my new medication for the past couple of years, and I’ve now been on it for two months – which earlier this year I did not see happening at all.

I have been signed off sick from work since March, and have been very poorly during this time. What I used to consider good days at the beginning of my disease, now don’t exist in that way anymore, but always trying to remain as positive as I can, I learn to adapt. So now if I have even an hour in a day where I feel well enough to get something done, or where I just don’t feel so shit, then that’s a good day.

I have to admit that I have been at my very lowest point this year, the stress of not being on medication which works, the combination of which has then has made me relapse (badly, which I’ll get to later), and the fact that it seemed like I was left on my own to deal with this by the NHS. Also, the fact that I’m 27 years old, and should be living my life as twenty-something’s do, having fun, being care-free, finding my way in life.

Things are now so much harder than they used to be, and in some ways I guess you could say I’m grieving for my old life. I nearly deleted my Facebook account (yes, really), as seeing everyone posting about their travels, relationships, engagements, weddings, babies, etc, made me realise what I’m missing out on (not that I begrudge any of you a fun, happy life!)

There were times where I half wished my illness was fatal, and I wouldn’t wake up in the morning. Thankfully, I’ve come out of that state of mind, and reading what I’ve just written scares me to think I was that low!

Anyway, things feel more positive at the moment. The fact I have my medication, is a huge weight off my shoulders. Not taking Rebif also helps, as that made me feel worse than the MS sometimes! My new medication is called Fingolimod, although the advertised name now is Gilenya. All I do is take a pill each morning when I get up, and that’s it, no injections!

Like any medication there are side-effects. I had to stay in hospital for the day on my first dose, as it slows your heart-rate down around the four hour mark. My resting heartbeat was 70bpm at the start, then at the four hour mark, it went down to 50bpm, and refused to go up for a while. I was worried I’d have to stay longer (if your heart rate doesn’t go back to your original resting heart rate, you’d have to stay for another two hours).

The idea was that we were meant to move around in the day, however we were connected to an ECG machine (which measures your heart rate), which was not wireless, so therefore not easy to move around. The Cardiology person had to disconnect us when we wanted to go to the toilet, and then I had to walk to the toilet with a long length of wires wrapped around my arm (which was difficult as I had badly sprained my right ankle the week before, and was more reliant on my stick than ever).

I had to be there at 7:45am, and I had a bad night’s sleep, so after being there until 4:30pm, I was shattered. The day passed fairly quickly though, another woman was taking her first dose in the same room as me, and we got along well. We’d compare heart rates, and pretend to compete with who has the lowest or highest heart rate. The day was interspersed with a blood pressure check every hour (my arm felt like it was being crushed), and an NHS lunch. The awkward part was having to take my shirt off at the beginning of the day, to have electrodes stuck on me, by an equally awkward Cardiology person (he wasn’t a Cardiologist per se, but worked in that department).

I had to really fight to get there, after my first complaint was brushed off, I had to hassle the MS nurses who were running the clinic, and they eventually suggested I send a complaint to their inbox, which I did. I tried to tug at the heart strings, and make those above who were doing nothing, feel terribly guilty, and it worked. The last delay was a Cardiologist having a problem with the medication, which felt like she had something against people with MS. Apparently she’d been given old data, which looked like we were more likely to drop dead than we actually were. Also the department didn’t want to commit anyone, as if an emergency came in, they’d have to leave us, and then if something went wrong, the blood would be on their hands. So instead the drugs company hired someone from my local NHS trust, paid them overtime, and they had to be seconded for the day so they could monitor us. I think the drugs company realised that no one was able to get on the drug because of this problem, so decided to pay for the monitoring themselves – hopefully this is happening in the rest of the country.

Hopefully my new medication will reduce my relapse rate, especially as my last relapse was so bad – I woke up one morning with a partially paralysed left side – my leg would barely work (just enough for me to drag it along the floor, so I could get my other stick, and use both). Using both sticks was a joke, as my arm was the same as my leg. I noticed also that I had no feeling on the left hand side of my torso, which felt skin deep, as if someone had frozen my left hand side. Thankfully this feeling subsided after a couple of days, but seemed to shift to my right side, and when it had totally gone, my hands were still numb, I couldn’t feel some fingers, and my walking was harder than usual.

The relapse lasted a few months, there are lasting effects, and my balance is getting gradually worse, as is my fatigue. I try to eat well, and do little exercises to help build up my strength, but recovery can take a while. Throw in getting used to my new meds – the first month your heart rate slows down, then goes back to normal after that, and the first few months my white blood cells are depleted, so I’m more susceptible to infections (such as this cold I’ve had for a week and a half).

Well I’ve written an essay, so I’ll go for now. I’ll try not to leave it so long next time!

Ciao,

Jo xx

Monday, 10 March 2014

It's been a while...

Well this is my first blog of 2014, and with good reason, I don't believe in just writing my blog for the sake of it, and wanted to wait until I had something new to write about.

Since my last post, I've had various health issues, and have had yet more time off work. I've had Tonsillitis twice, which may be Glandular Fever, but the Doctor said that this doesn't always show up on a blood test...great. This would make sense, as my Glands have been swollen since October, and after the Tonsillitis seemed to disappear, I still felt really generally unwell. I had a blood test to test the Lymph glands, and that came back as slightly raised, but my Doctor said as it's been slightly raised in the past, then it's probably nothing to worry about, so to see her in the New Year. I then got Tonsillitis again recently, and she signed me off with anti-biotics.

I'm going to see a different Doctor this week though, as when I saw this Doctor last week, I said I still felt unwell, maybe the Tonsillitis has affected my fatigue, so she just signed me off, wrote 'Fatigue' as the reason, and didn't bother to check my throat or glands. Now, the term 'Fatigue' really does belittle how I feel, and is somewhat insulting - this is an illness mixed with MS related fatigue (which is not fun by itself anyway). Hopefully if it is Glandular Fever, it's something that will go away soon, I seem to get waves of being okay, and when I do I can see people and socialise (rather than doing my usual cancelling on them), so people I know don't really see me at my worse (believe me, it's not a pretty sight!)

Anyway, going on to the positive aspects of my life, things are progressing (albeit slowly), with my going on to the Gilenya medication, and I am sick to death of injecting Rebif, and have now reduced it to 2 doses per week, rather than 3, otherwise it makes me feel worse than the MS!

I was originally going to have to travel to Chertsey to take the first dose (you are admitted to hospital as an outpatient, while they monitor your heart rate on the first dose, as it slows your heart rate down), but thankfully a Brighton team has now been set up. The Brighton Gilenya team do things differently in that you have a portable ECG fitted for 24 hours (which isn't great when sleeping, as I managed to get entangled in the wires), and you have an eye scan before the first dose, you still have to be admitted as an outpatient, and have your heart monitored on the first dose.

I submitted a mammoth complaint to my NHS trust in my treatment from diagnosis until now, which got me a neurologist appointment (I should have had one anyway, but at least I got one, despite having to complain). The complaint department are yet to formally respond, even though I complained in October - someone joked I should complain about the complaints department! The woman who has been dealing with my case gave me an excuse of something being wrong with their office; I am unaware what this is, as I wasn't really listening.

In other good news, I have now moved into a flat by myself, (no more house shares). It's a council flat, so it's affordable for me with being on part-time hours, and also if the worst were to happen, and I had to retire for medical reasons (hopefully that won't happen), then it'd mean I could claim full housing benefit fairly easily. So, I am secure. Plus it's only a 1 minute drive from my Mum and siblings.

Anyway, I'll write more once I've started taking Gilenya, hopefully it will have a good effect.

Ciao for now.

Tuesday, 10 September 2013

Knock me down, I'll get back up, there's no other option!

Well, as I have more to write about, here's another blog!

I'm finally over my relapse, but I now have the fatigue to get through, and an eye infection PLUS a cold had also been added to the mix, so more fatigue - oh lucky me eh! Ah well, it could be worse, plenty of rest and hopefully this should sod off. Although now it's September, it means that it's officially Cold & Flu season, so I bet there's many more lovely viruses for me to host over the coming months. Which reminded me to call my Doctors to enquire about my yearly Flu jab (it's usually me and the local elderly people getting their jabs), and the receptionist was pretty clueless. She said: "Erm, ah, well, I think we're doing that at the end of October, so call back then." I said to her that was pretty late, as I usually book it in September, and have it later that month or early the following month, as of course, with me having MS & mild Asthma, the earlier I have the jab, the better chance I have of not getting the Flu. She replied: "Erm...just call back nearer the time." Great, thanks for your help.

In medication related news (the thing I must moan about more than anything else), I went for my appointment in London to be assessed for the Stem Cell trial, but they decided that I wasn't eligible, as most of my symptoms are sensory, so therefore they can't measure them. It was a long day, I left late morning to allow me time to get the trains I needed to, then the bus to Charing Cross hospital, my appointment was late, then there was a fire alarm which didn't help.

The Doctor tested my reflexes, got me to walk without my stick, used a pin prick to see if I felt pain, and even though I have much less sensitivity on my left side, and have trouble walking (due to balance problems and an annoying numb patch on my left leg), they gave me a score of 2 (whatever measuring scale that is on I don't know), and you need at least 3 - 6.5 to be eligible. By the sounds of it, they want people who are pretty much verging on Secondary Progressive, or if you have dodgy bowels and/or bladder - which thankfully I don't.

Needless to say, I was pretty upset afterwards, as I thought I was pretty much on the trial but this was a formality. I decided to get pissed that evening to drown my sorrows, so I met up with a friend, had two pints, before going to a gig in Burgess Hill, where I had a further five pints. The funny thing was I kept dropping my stick, then insisting on trying to pick it up myself, and managed to - the alcohol masked the numbness in my leg, so seemed to help. I'm sure I spoke lots of rubbish, but I had a good night and let off some steam, which was very much needed.

I've come to terms with it now, and need to focus on getting the Gilenya pill medication, and keeping fit. It's amazing the contrast of my fitness to what is was 2 years ago, and 1 year ago, as I went to an introductory Physio Pilates consultation yesterday evening, and I felt sore afterwards, and in comparison to what I used to do at the gym, was nothing! Then again, four relapses (especially one lasting 4 months), can do that to you, I think my body is a bit ravaged.

My aim for the next six months is to be on new medication, loose the walking stick, be fit & healthy, keep my mind sharp (I'm starting the first part of my part-time degree next month), and try and be the best that I can. I can't be as well as I used to be, so getting well and recuperating from what my immune system has thrown at me is the next step, and if we can get Stem-Cell therapy in the next five years, hopefully I'll have a good chance at recovering. Then, I'll be an annoying thirty-something acting like someone in their twenties, I will have time to make up you see!

Well, until next time. Hopefully next time I can blog about how I'm off Rebif, and on Gilenya, however I've been waiting so long, it might be nearer Christmas...let's hope it's nearer.

Jo x