Little Miss Not Quite As Positive As I Normally Am But I’m Sure I’ll Get Over It!

Today is the husbands birthday. Today should be all about him. We should have gone out somewhere for the day – his choice, then either out for a meal tonight or a home cooked meal by me – whichever he’d prefer. Today’s the day when he should get to do whatever he wants, no housework for him – we’ve taken time off work after all. However…

Today is Tysabri infusion no. 6 which means any plans we might have had for the husbands birthday have been scuppered. It’s a reminder that my MS doesn’t just effect me but my loved ones too. While I cheerily chat to the MS Nurses & my fellow Infusioneers (I thought we deserved a cool name) the husband on his birthday gets to wait around a hospital for me, maybe go for a coffee in the canteen. Tonight I will feel exhausted so the husband has to do any bits of housework I didn’t finish this morning and sort out food – a takeaway, it is his birthday after all.

Today is one of those MS days that suck. Anyone whose read this blog knows I’m on the whole annoyingly positive but just occasionally I have to admit that having MS sucks. It’s not the impact on me, I just get on with that for the most part but it’s the impact it has on everyone else who occasionally have to play second fiddle to my defective immune system that really gets on my nerves.

The husband of course says he doesn’t care. That once you’ve turned 30 birthdays aren’t important unless they end with a 0. He also says that keeping me well is more important than his birthday and I know that’s true but it doesn’t stop me from feeling bad.

On a positive note (or two) because there always has to be one with me – I’ve worked out, unless they change my appointment day, the husbands birthday isn’t likely to fall on my infusion day for at least 11 years. We won’t talk about Christmas because that’s a whole other blog! Positive note number two – the drug seems to be working. During my strength tests with my consultant last month I beat him in our equivalent of an arm wrestling competition – yay me.

So even when I’m writing a not so positive post I can’t help but find a couple of positives. Because at the end of the day being negative doesn’t get me anywhere. And for some reason being here, chatting, laughing even – it makes it okay to not be quite so positive. A normal level of positive maybe…

Positive note no. 3 – I’ve written another blog post.

Sticks and (Mile)stones

I can’t believe it’s been four months since my last post. As the saying going ‘time flies when you’re having fun’ aka landscaping your garden, running a part time jewellery making business as well as working full time, going on holiday and the list goes on. I’m not complaining about being so busy – it’s great being able to be so busy.

I’ve intending to blog numerous times – I even had a list of ideas on my fridge. Interesting articles in Women’s Health Magazine that were relevant to my MS featured heavily and of course my milestone. In June I had gone a year without a relapse. But I’m easily distracted! I’ve concluded that I need to be trapped to post! Trapped may be an exaggeration but sitting in a hospital chair hooked up to my four weekly Tysabri infusion makes it difficult for me to do other things. Which is why I’m writing this now though intermittent WiFi means it probably won’t be posted until later.

I don’t really have any thoughts on my one year milestone now. I’m not sure what I expected to feel – it just kind of past me by. I think my real milestone was ten days ago at Reading Festival when I realised how far I had come in a year. I had gone to Reading Festival in 2013 still accepting that I wasn’t as physically able as I used to be, seeing myself as different from other people. Determined initially not to use the stick which I’d bought specially, not to go on any viewing platforms. That weekend helped to change me – helped me realise that ‘I wasn’t giving in’ if I used those things – I was adapting.

A year on, unfolding my stick, I have no problem with using it. I know that on an uneven grassy field wearing boots (having lived in flip flops for months) I’m going to struggle to balance due to the feeling in my feet. I also know that sometimes I’m going to need to sit down, that I won’t always have the strength to get pushed around in a crowded tent, besides the views from the platforms are awesome. Because I don’t want to miss any of it, I want to be there all day every day. No longer scared of using my stick it amazed me how many other people I saw with walking aids including lots of people far younger than me. I never was different – I just hadn’t been able to see it last year.

If you look at it the other way (and I know it tends to sound cliched) we are all different. Most of the time you can’t tell I have MS by looking at me – my illnesses is hidden away. Just like my friends with stomach conditions, auto-immune conditions, anxiety disorders, depression and a husband with Bipolar Disorder. It’s easy to build up to a milestone but actually I think the milestones let you know when you’ve reached them like they did me at Reading.

Listening to my favourite band of the festival play I thought about my life with MS and just life in general. I know why I’m so easily distracted, why I’m busier now than I’ve ever been – it’s because I know right now I’m probably feeling better than I have for six years. I also know that there is no cure (at the moment) for my MS, but I’m managing it the best that I can so I want to make the most of being able to do things when I feel well. One of my favourite books, the journals of Dan Eldon is called ‘The Journey is the Destination’. Though tragically killed at a young age they show just how much he ‘lived’. Though ultimately sad his is an inspiring story. I don’t want to be someone just waiting on a cure, afraid to do the things I want to do.

I’m learning to know my body well enough now to know what I can and cannot do. Four songs into the Augustines set, I can see that I’m not going to get pushed around as long as I don’t go too near the front. I make my way into the crowd, stick in hand and get lost in the music – just like everyone else around me.

Me and my stick with Billy and Eric from Augustines

Making lemonade #2

Thought this was a great really well written blog post.

Dave's Magical Brain

Way back when I started secondary school, a rumour went around that all the boys would need a medical during the first term. This would involve a procedure where a nurse would hold our testicles while we coughed.

This never happened, of course, but a part of me believed it. It made the eleven year old me unduly anxious to say the least.

I often think about how cool it would be to be some sort of guardian angel to my awkward, shy, younger self. I’d put a supportive arm around my own shoulders and whisper something into my ear… some mature advice to make me feel better: “That thing about a nurse holding your bollocks? It won’t happen. It’s utter nonsense… ha ha! Just you wait another 30 years.”

Fast forward to the other week…

I’ve learnt a new skill!

It involves passing a foot long length of tubing…

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The Oxford Bar

My Top 5 Songs from Breaking Bad – CONTAINS MAJOR SPOILERS

Raising Down’s

~tim love~

Last year my wife and I were inducted into an elite group whose members include: Jamie Foxx, John C McGinley, Damon Hill and American baseball star Albert Pujols. There is only one requirement needed, Down’s syndrome.

Our daughter, Chiara Lorraine Love, was born November 27th 2012. Two weeks after her birth she was diagnosed with Trisomy 21 or Down’s syndrome, a genetic condition caused by an extra copy of the 21st chromosome. The day of her birth will forever be engraved in my memory, as will the birth of our first daughter (Amelia), my wedding day and standing in front of 50,000 people as an opening artist at London’s Hyde park. When Chiara arrived we instantly knew something wasn’t quite right, a slight folding under her eyes and slightly thick neck; both common traits associated with Down’s syndrome (DS).

We spent her first two weeks observing…

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7 tips for avoiding divorce during major building work

budding communications

We are now in the final phase of our major building work and I’m writing this as the dust settles around me. We have no kitchen, 1 working toilet, no showers and a bath surrounded with un-grouted tiles and it still amazes me that it didn’t occur to The Husband and I just how much work was involved and how much disruption it would cause.

It got me thinking about how unprepared we were mentally for this incredibly stressful time. What have I learned about myself, my relationship and my condition during this process and what tips can I pass on?

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