Tuesday, 2 February 2016

All quiet on the MS front

I'm certainly in the midst of an odd stage in my life! On the one hand my MS has settled quite a lot. Maybe I have a short memory but even my fatigue has felt better in the last week or two. On the other hand, I'm awaiting a date to start chemotherapy which will wipe my immune system out and put me at risk of some serious side effects.

Although I'm very much getting on with my life, going to house viewings, booking gig tickets etc, I'm aware of this shadow over everything. Even my boyfriend seems to be completely forgetting about my diagnosis as he seems intent on extending my daily commute to work, whilst considering the location of a new home, in order to shorten his. Admittedly his commute is long. 

I do feel that everything in my life is in quite good balance at the moment and I'm sure that that has prevented the repeat relapses continuing that I experienced when I was so stressed earlier in the year.

The treatment I'm waiting for is called Lemtrada and it consists of an infusion for 5 days in hospital in year one and a 3 day infusion in year two. I feel very calm about it. I wouldn't call it excitement but there's definitely anticipation. I hope it does the job it says on the tin! It's not a cure but should stop progression for years. I'm still finding it bizarre that I'm waiting for chemo!

It's just a waiting game for now!


Sunday, 17 January 2016

Walking Mountains

I literally walked a mountain yesterday and it felt great! We headed off to the Brecon Beacons early as it was a beautiful, clear day. I was expecting a quiet little car park and mountain walk but it was like whole of Wales had arrived at Pen y fan! As soon as we were parked though it wasn't a problem at all. Walking boots on, Ted's coat on and we were off!

About 200m from the top it was a complete white out, we couldn't see a thing. It was lucky that there were enough people marking the footpath. It took about 3.5 hours and it was steep!
Prior to the walk I was worried I could get over tired etc but it was fine.

Fatigue is a very funny thing to get your head around. I don't understand it at all. Earlier this week I was really struggling with it and yet I managed that walk and actually feel better for it! What seems to really exhaust me is work and any sort of rushing about and stress. I don't blame people for not understanding MS at all because I don't. I'm sure colleagues of mine will wonder how I walked a mountain but need to work from home two days a week and even then I get mid-week exhaustion. All I know is to listen to my body. It's worked well so far since diagnosis with no relapses.

Positive note for the day: be grateful for little triumphs.


Wednesday, 13 January 2016

Sorry, I'm just going to sit here in silence

I'm tired, I am so tired. This afternoon has been rubbish. I need to rest and it's only Wednesday. I had to travel to our head office on Monday and stayed Monday night, returning on Tuesday. It's a good 4 hour drive. Luckily I just had to be a passenger but my God I feel like I can't move today now!

For a while, on the journey back, I felt like such a child. Sitting in the back with a cushion in silence... resting!

Everyone in the company appreciates that it's tiring and I enjoyed the trip but no-one quite gets how detrimental that kind of activity can be. I'm basically struggling and my MS has only just started. I've got 30- 40 odd years of this left!

I'm finding that if I'm really well rested I can have about a day and a half completely unaffected by any symptoms but the ratio in comparison to my life pre diagnosis is quite depressing. I used to be able to be active and busy six days a week and maybe having a quiet Sunday! Just like many others. Now it's more like one active day, one rest day is needed. Ugh, I hate resting. It's so boring!

I didn't intend this post to be a rant but but I'm so sick of it! For anyone wondering what it feels like; I feel like I have the aches, pains and exhaustion of really bad flu, all day every day. Along with a side portion of numb hands and chronic back ache. None of my worst symptoms are present at the moment though so I should be pleased!

Tomorrow is another day though and I'll be more positive then!


Sunday, 10 January 2016

Thank God

... for St Tropez gradual face tanner.
The difference it makes! Seeing myself in the morning, make-up free doesn't quite reflect how I feel most of the time. I look ill and I'm not planning on looking ill for some time yet! But thanks to the glorious British weather I look grey! Quite soon after diagnosis I forgot to put any mascara on before work. My kindly Manager whispered over the top of my desk at a quiet moment. 
'Are you ok? I hope you don't mind me saying, you look really tired. If you need to go home then do.' 
I didn't take it personally, I just didn't have mascara on. In hindsight I must have been a little tired and out of it to have not been bothered about being at work make-up free!

My neurologist said I should start a high dose of Vitamin D daily which I've been doing for 4 months now. They're obviously not 100% sure of the link between MS and sunlight but there clearly is one considering MS is so rare near the equator and so common in Northern countries. Even in the UK it's far more prevalent in Scotland than the South. I have always loved the sun. I'll miss sunny Mediterranean holidays spent on the beach so much. My last relapse, pre diagnosis, started mildly just before I flew off to Crete for a week. By the time I flew back I knew for sure that it was MS and my muscles were so stiff it felt difficult to walk. Even though I could, thankfully! That was probably the last time I felt warmth on my skin. Yes, we've had some bright weather since summer here but not enough to feel warm!

The British Winter is so unhealthy. For five days a week, for months on end, we go to work in the dark and get home in the dark. Seeing daylight through our office window if we're lucky! This weekend the rain has just not stopped too. A bit of rain doesn't usually put me off a dog walk. It's usually quite refreshing and makes me feel like I've earned a good lunch but this weekend has been relentless so I haven't seen daylight this weekend either! I don't know what the solution is but it's not good for anyone!

The one thing that's made a huge difference to my lifestyle since my diagnosis is working from home for two days a week. I know I'm very fortunate to have this arrangement and it allows me to get out and walk my dog at lunchtime. It splits the day perfectly. Giving me some exercise, a break from the screen and a glimpse of the sun! I think remote working is the way forward and I thought that with wifi, laptops and mobile phones this was the objective. More flexible working rather than what it's become, constant communication and access to everyone and just more work.

Ah well, I will continue to plot my escape to the country/wilderness in the quest for a healthier and more mindful lifestyle. It might not involve a hot country anymore though. I'll just need to keep relying on the St Tropez!


Sunday, 3 January 2016

A little background

So I started 2015 with quite a positive outlook, it had to be better then 2014! Well it started off ok but I got diagnosed with MS in October and it had been going downhill since May.

The only bit of advice I'll give anyone is to go and see a doctor if you ever feel wrong. I remember joking with my boyfriend at the start of last year that I felt so tired all the time. "Maybe I have ME!" His response was, "Don't be silly. ME is really bad, you wouldn't be able to do as many hours at work as you do."

Well, I wasn't far off! I'd felt exhausted, overwhelmed for a while. I'd put it down to a busy year catching up with me. I bought a flat on my own and changed jobs at the same time, I moved in with my boyfriend who was studying a post-grad and therefore I was the breadwinner. We got an 8 week old puppy a month after moving in! Then my Dad died 12 weeks after being rushed to hospital for emergency surgery, he died  of cancer. All within the last 6 months of 2014. So understandably I put the way I was feeling down to a busy year and a busy job.

What I couldn't shrug off so easily were the first symptoms that really tried to get me to notice them. The numb finger that started when I was half way back down a mountain in Wales, progressing in to a numb hand or the complete loss of co-ordination I felt when moving around. The only way I can describe it was that I felt like I was walking like a thunderbird puppet. It didn't look odd but it felt odd. I later discovered that it's called ataxia. Then the week of complete double vision shortly before a big work event. I was waiting to pull out of junction on my way to the office. Two cars were coming past from the right. They got right in front of me, passing by. Oh there's only one car. 
That moment right then is when I got scared. I'd ignored the tired feeling, the fatigue. Ignored the numb limbs, the ataxia, the dizziness, the faint feeling, the squinting whilst trying to read but loosing my basically perfect vision scared me and I booked an emergency doctors appointment that morning. Obviously nothing happened for months still but by that point at least I'd acknowledged something was wrong.

So that's my tale for the day! Go to a doctor whenever you think something is wrong. You're not wasting anyone's time.

So I've written off 2014 and 2015. Come on 2016, you owe me a good one!


Saturday, 2 January 2016

2015: a year in review

Well, the inevitable has happened. I've started a blog, again! Maybe this one I'll stick to. I started a fashion blog back in 2010 but considering my feelings on fashion have always really centred around comfort, it didn't last. Beauty blog, well I hate my photo being taken so that too was a success! Food blog, if any was going to succeed this should have been it but maybe it was just laziness!
I was never really a diary writer, although I liked the idea, so we'll see how long I keep this up to date!
So 2015. It wasn't what I expected, not quite what I hoped for but I've started to force myself to see the positives in all things.

What I expected to learn...

1. That grieving doesn't end as soon as your, gratefully received, compassionate leave does.
2. That turning 27 is the start of the road to maturity!
3. That things can only get better.

What I didn't expect to learn...

1. That I'd be diagnosed with a lifelong, incurable and progressive disease.

Sounds dramatic I know but it's only MS, I won't die from it!
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