Thursday, 21 July 2016

Summer Time!

It has been so hot in the last few days. My last major relapse started just before going to Crete last summer so I was a bit nervous about being in 30+ degree weather but it's been fine and it's been glorious! I love the heat so it has finally felt like summer.
I've have had one odd symptom which is new which appeared last night but it's disappeared now luckily. It was a weird burning sensation in my wrists- quite painful! But it's gone, phew!

I also have my DVLA requested assessment with a GP to see if I'm fit to drive next week. Seriously nothing is set up for the relapsing remitting nature of RRMS. They're going to assess if I'm fit to drive  for half an hour on one day. Fact is I am fine to drive, I was only semi-blind for a week last year so I'm sure I'll pass with flying colours!


Wednesday, 13 July 2016

A catch up

I had a follow up appointment with my neuro yesterday which marks 3 months post Lemtrada. Firstly where is the year going!!? Three months since my infusion! I can't believe how fast time has flown. Secondly it's the first time I've seen my neuro since diagnosis. This time I was determined not to cry, I have at every other appointment! 
It was short, mainly because I don't have much to report to him. I haven't had a relapse in a while thankfully so we just caught up about treatment. I managed not to cry, bonus!
However my one moan would be my fatigue is just a joke! I'm finding keeping up with house duties and then trying to enjoy my life a bit on top of work really hard! Yesterday for example after the appointment and lunch with a friend down in Bristol, we drove home and got back at around 4:30pm. Rather than walk the dog, do the dishes that needed doing and some tidying I had to go to bed. I physically had to lie down and before I knew it I was asleep for a good hour. Not how I wanted my week off work to go to be honest! I miss feeling super productive!

Thursday, 2 June 2016

They're back

The worries that is.
I'm now nearly 2 months post treatment, the time has flown by! I'm back to work and normality. Life has been uneventful since returning to work, I've been feeling good just weighed down by fatigue but it hasn't stopped me doing anything.
Just 2 weeks before treatment we moved house and I got a joint mortgage with my partner, all very serious! 
I couldn't be happier, he's been the best support I could have had over the last few years.
However we argued about money recently and the root of the problem is not our joint love of eating out or expensive taste in rum it is bloody MS!

It's his first mortgage and I remember the sudden realisation of financial responsibility that came with mine when I bought my flat. The thought of loosing income is really scary. It means you'd be homeless. We had budgeted before moving but hadn't really included any savings in that budget. Now he's afraid of  the idea that I could have to be off work with a severe relapse at any minute and if I wasn't being paid we would seriously struggle. That's the crux of it. The complete unpredictability of my situation.
I'll be honest, it's shit. 
To add insult to injury of course I can't get critical illness cover anymore. We went through a mortgage broker and one day a few months back I was suddenly being asked if I had any long term health conditions over the phone whilst at work as the broker rattled off a list of what notify able conditions were included. Probably expecting a 'no', I mean he knew my age, knew my job title, knew my financial situation. He probably didn't expect me to say 'err yes, that's me'. It was the first time I'd told anyone other then those closest to me. It was met with awkwardness and so I made a light hearted comment to diffuse the situation. 
'Yeh it'll be too late for the critical illness cover, got one of them already!' 
Again the lack of cover makes me feel ever more financially vulnerable. 
So the other half and I argued but in hindsight I feel bad about it because it can't be easy for him vowing to stay with me and making such a big financial commitment when I'm basically a ticking time bomb of dependency.
As you can probably tell, this is still the big issue I'm having getting used to this diagnosis- the probably lack of independence in future.


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! 


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!

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!

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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