Thursday, 12 May 2016

A Lemtrada update

So it's been 4 weeks now since starting Lemtrada. I think I've had a fairly easy ride but it's hard to know! The week in hospital was fine except my final blood test around 5pm on Friday afternoon they tried and failed 4 times to get a vein! Take it out the bloody cannula please! I'm like a pin cushion! 
Week 1 post infusion was awful as my last post confirms. I was so sick for about 4 days but it passed. Did you see the Louis Theroux show about drinkers? For about 4 days I was the guy in the advert, dying for steroids! I read that the recommended daily dose for steroids is 5-60mg a day, for 3 days I was getting 1000mg via IV. My nurse friend said it was pretty mean making me go cold turkey after that!
Week 2 was not great either got an awful cold on Monday and was in the docs by Friday getting antibiotics for a chest infection. Week 3 was ok just back to the usual aches and fatigue that I had before treatment everyday.
I'm back working this week but from home thankfully. I've found my concentration is really lacking and I'm tired still!
I really hope Lemtrada tackles fatigue and my muscle aches. I miss the feeling of waking up occasionally ready to go with loads of energy. I didn't appreciate it when I had it! 

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Wednesday, 20 April 2016

I got cocky!

So I'm five days post round one of Lemtrada treatment. I feel pretty damn good all infusion week and over the weekend and Monday. I went to ikea to get some bits for the new house and now God do I regret it!
Since yesterday I've been feeling migrainey, unable to finish food and more tired and weak than ever. I think it's a mix of my usual migraine, which was due, along with steroid crash, less water than last week and less paracetamol etc. I can't keep water or painkillers down. I was drinking 3-4 litres of water a day during infusion to flush out the burst T and B cells! Now I'm struggling to drink and it's making me feel awful! 
Oh well, it'll pass!
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Wednesday, 13 April 2016

Day 3 of Lemtrada

So I've gone in, guns blazing on my MS! I'm imagining it's all a bit Mad Max in my bloodstream right now.
I'm in hospital as I write, feeling pretty good, just exhausted. I'm not feeling that steroid buzz during the day and then not sleeping too well at night even with sleeping tablets. 

Lemtrada always seemed like the only option but whilst in the infusion room it's clear that lots of people who have had MS longer than me are on less potent meds like tysabri or tecfedira which I was offered but didn't even consider. I think I've been very lucky to be offered Lemtrada immediately. It's only been fairly recently approved by NICE and it works best for those newly diagnosed so I'm the perfect candidate. It's the closest thing they've ever had to a cure so I'm very lucky to get it. I know of someone diagnosed around a month after me who had activity for far longer, who hasn't been offered any treatment at all. It seems like the way they're approaching my treatment is fairly new, in the past when symptoms were mild they left it to progress to later stages before treating it rather than nipping it in the bud. I feel like I got it at a good time! 
In other news, we moved house 10 days before I began treatment, still lots to do but it was the best thing that could have happened. We have so much more space and a garden! I would have found it very depressing recovering for a month in the tiny flat, as great as it was earning my first flat, it was always a stop gap. 
So to keep me occupied during my long hospital days I'm creating vast shopping baskets on ikea online to treat myself to post treatment! 

p.s I simply can't be bothered to proof read this so excuse the typos. I'm now going to have a drug-filled nap!

Positive thought: I'm half way through the week already!
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Thursday, 24 March 2016

Going public...

It's an odd thing having MS. Sometimes I don't want people to know, I don't want to be treated differently, pitied, uninvited to things, paid less etc and some days I want to talk about it, raise awareness, make people understand, come clean and not have to feel like I'm hiding a little secret!

I think there are pros and cons to each way of dealing with it. 

I haven't made up my mind yet. All the people that have to know do but beyond that, like the 'second circle' don't. 

I'm now scheduled for Lemtrada on 11th April. This means several weeks off work for me and some understanding when I return from work about my stamina and need to keep away from people with bugs. I've been weighing up how to approach this and think that I want the 'second circle' to know but the idea for some reason is quite scary. It feels like I have to announce it. 

I felt a similar way when my Dad died. I wanted my close friends to know but bringing that up out of the blue in conversation is hard! It's hard to broach taboo topics in real life conversation. Maybe that's why I ended up announcing it via Facebook... and I don't share anything on Facebook! I had never understood announcement like the death of someone in local newspapers but when it became a crucial thing for my Mum to organise so soon after the event I then completely understood.

There are times in our lives when we need to reach out and tell people things but we're often faced with discomfort by those listening and receive bland responses as people just don't know what to say.

Next time you hear of someone's loss, someone's bad news; reach out and offer them an ear for listening or a  shoulder to cry on. They might be ignored by other people who are desperate not to say the wrong thing but just being there is better then not being there.

With regards to my latest announcement, I might just use the Facebook route again!

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Sunday, 20 March 2016

10things every fashionable woman should have by the age of 30

Well according to Harper's Bazarre.
I came across this via Pinterest, I do not read this magazine. I thought it was too good not to share!

No 1.
Classic shoes, they recommend Manolo Bhlaniks at 600$. I have an identical pair from Primark £10. I think I win this round!

No 2.
A great suit. They recommend a Stella McCartney one for $2000. I have a Mango jacket £40. Done! 

No 3.
A signature flower....
Does this mean I can only like one flower? One plant? I'm confused by the whole idea. 

No 4.
A classic timepiece. Their Hermes one is $2300. I'd call my £20 one from ASOS a classic, it's mint green!

No 5.
A go-to lip colour. 
Does Carmex count?

No 6.
Jewellery you never take off. "Choose a future heirloom and make it count. This Repossi ring $16,800."
Just fuck off. 

No 7.
Original art you love.
"Art that speaks to you will always make you happy. This Yolanda Sanchez $7000."

I'm not even badly off. About to sell my flat and buy a house so I'm very lucky but seriously this vapid shit should be shoved right up the writer it came from!

Have a lovely Sunday everyone!



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Tuesday, 15 March 2016

How to be free

I just finished reading a book called 'How to be free'. It was essentially describing the virtues of creating an alternative narrative for your life. Most people subscribe to the usual, go to school, go to uni, get office job, get married, buy house, raise children, retire. The book raises the possibility of doing things differently. Why buy a house, why climb the career ladder etc. The author's main points were that we should spend more time 'making merry' and taking life easy rather than following the capitalist path! He questions the constant desire of people to progress, constantly striving for more. That could be success in a career, a bigger house, more money. Noone's ever satisfied and ambition and drive is only ever viewed as a positive but why when all it does is create competition and in turn competition creates disparity and inequality. Why is that a good thing? You can't be rich without someone else being poor. 
There is an assumption that if you're not highly ambitious and 'successful' then you're lazy and probably a bit of a failure...
I've always been quietly ambitious, I had plans! However I'm starting to get used to the realisation that I can't push myself as much. Stress is awful for my symptoms! I'm gradually getting used to this and learning to simply be content with what I have and not always striving for more. It's difficult because I do want more from life but I'm starting to just accept and be greatful for what I have.  I'm getting there!
So in an odd way I'm glad MS has made me more content with life. I'm not going to say a happier person but I kind of feel like I've got an excuse! So if I don't manage the traditionally held idea of 'success' in life I feel like I have a reason why! "I'm not a failure, I'm a failure with MS, leave me alone!" 
The book made an impact because it said to me that, whatever happens, it doesn't matter what others think as long as I'm happy.
All I would like from life is happiness and relative good health. My priorities have changed! 
Thanks MS.




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Sunday, 6 March 2016

Patience

It's been a very up and down few weeks! I had a bath on a Wednesday night a few weeks ago. It was really cold out so I made it one of those great baths that are scorching hot. I basically par-boiled myself. Glorious for the first 5 minutes but oh what a mistake! I knew heat could be a problem for MS. I know my last relapse was exacerbated by the heat of Crete (just before diagnosis). However, I had not had any issues with bathing or showers before. After a few minutes boiling I started feeling faint, completely spaced out and weird. I climbed out and proceeded to collapse on to the bed. All my muscles had decided to simply check out for the night! Can't remember if I managed to get pjs on... possibly. 

The fun continued! I woke up at 5 with an irritating headache. I knew it was a migraine but also knew I didn't have any Migrileave. I eventually managed to fall asleep but promptly woke at 6am, just as the other half was preparing to leave for work. Within 5 minutes the sickness started. Migraines are an absolute bitch!
They used to bad but they're even worse with MS. All my muscles go weird, I feel so weak I may as well be made of toilet paper! Thankfully I had a slightly later start at work than normal so there were a few hours to crouch over the toilet before heading out! It was a great 24 hours, truly enjoyable.
The thing is it then took about a week to recover. The aches and exhaustion were all consuming. Of course I was still able to get to work and walk the dog each day so noone would have realised the struggle to get out of bed in the morning!
However, I woke up just over a week later and felt really good on my morning dog walk. Joyful light at the end of the tunnel!
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