Life waits for no one

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Had the best conversation today, me and my husband were discussing mortgages, bills and boring things like that, then during this conversation we ended up making a decision to just carry on as normal. This got me thinking,  I have had such a strange year, my health being only one of the crazy things that gas gone on, and yet we carry on as normal.

I’m going back to work tomorrow after a long 14 months of maternity/holiday leave, I took the full entitlement to enable me to be a ‘stay at home mam’ for a year. My life has been all over the place this year tho, and to be honest it still is a bit, but tomorrow is a big day for us all. My daughter goes to reception class full days tomorrow(she is beyond excited to stay for school dinners),  my not so baby boy is starting nursery class for 2 days while I’m working. And yes i go back to the day job. I’ve now found myself in the familiar Sunday night routine.

•School back packed, uniform ready. •Nursery back packed, forms filled in and clothes laid out.
•Work clothes hanging up and lunch all sorted.
•Breakfast set up ready for in the morning,  alarms all set and yes everyone has been bathed!

Back to normal.

That’s what works best,  back to what is familiar,  what needs to be done and what we do as part of our normal lives. Because life waits for no one and if I don’t get back to normal I fear I may not be living it at all.

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2nd treatment & 2nd wedding anniversary

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I’ll be honest it’s not as nice as last month. The needle and infusion are totally fine but my chair is broken and uncomfortable,  it is stuck upright and doesn’t recline (1st world problems) and im sat in a draft too! I’m sure I’ll get over it though 🙂

Ok whine over then – the staff are lovely, it’s a great atmosphere and nothing is too much trouble. I’m on my second cup of tea and lunch will be hear shortly. I can’t really complain!

I was prepared this time with my book, snacks and drinks all ready to keep me going. I even had time to go shopping for new work shoes before my appointment without children, This is classed as a luxury indeed.  This has turned into a lovely me day when I have my treatment, turn a negative into a positive I say 🙂

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Really looking forward to tonight too as me and my husband are going to see Ant & Dec on the takeaway tour in Newcastle, it’s our second wedding anniversary next week so having a night out together tonight – can’t wait 🙂 It’s lovely to get some time just the two of us and go out together. My mam is going to babysit for us so kids will be all sorted.

Ok i’m going to read my book and wait for lunch, all good! Apart from a numb bum

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Is sharing caring? Or not worth the hassle?

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I’m never sure if I should share my diagnosis with people, I have obviously told family and close friends. Work now know as I’m going back from maternity leave soon, but how much do people share? And is it worth it?

I’m just wondering if it’s better for the world to know or not? I feel like it’s not a secret and im not embarrassed, so why shouldn’t people know? But on the other hand it feels private and none of people’s business. I don’t want to be the topic of conversation or be pitied and treated differently. I’m not even sure why either of these things are an issue, it’s just something that is playing on my mind right now.

I’m just at the stage of finding out how to incorporate MS into my life right now, taking extra vitamins, eating better (mostly) and exercise are all I can do other than my treatment right now, but now life has settled down is it better to explain the little things where MS shows or hide it?

My right hand is weak, my fingers don’t do as they are told sometimes,  holding a pen is harder than it should be, I slam things down rather than place them and I drop things – a lot. Do I just say I’m clumsy? Should I bother explaining? As this tends to lead to a whole long conversation that I don’t always want to have.

When these things first started happening, before I was diagnosed, I got the feeling people didn’t quite believe me and maybe thought I was exaggerating or being a drama queen. Talking about these ‘weird’ new symptoms I had and how things had stopped working properly. Maybe as I made light of it and wasn’t poorly or they got bored of it they thought that. This puts me off talking about it, I don’t like feeling like that, so it’s easier not to fill people in.

I’m not sure which is best right now, I suppose I’ll find out one way or the other.

Life is moving……. best get back on it 🙂

JCV Negative, that’s positive!

Today I had another visit with Barbara to check in and get my bloods done again.

My liver function test (LFT) was quite high when I had my 1st lot of bloods done, and this was before my treatment had started. So we are keeping an eye on this, my neurologist and MS nurse had consulted with a specialist about my liver before they started me on Tysabri. I don’t really drink alcohol and don’t take a lot of medication or any drugs, so it is unusual for it to be high.

They decided the need for me to start treatment for my MS was greater but we still keep a check on it and I’ll have appointment for a liver scan soon.

My results from my last lot of blood tests had came back and I was showing as JCV negative, which is quite a relief as this greatly decreases the chances of me getting progressive multifocal leukoencephalopathy (PML)

John Cunningham virus (JCV) is a common virus that’s completely unrelated to MS, about half the UK population are infected with JCV and most people are infected in childhood. 

JCV is important when taking Tysabri as the virus can become active again in people who have a weakened immune system and can end up causing an unusual brain infection (PML) which can lead to severe disability or death.

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Although I have been tested and my results have came back negative, I will be tested again to re check incase anything changes in the future, but for now it’s good to know 🙂

While talking she seemed very interested when I mentioned I have always had reoccurring water infections,  I’ve never been given a reason or had any investigation done as to why this happens. She mentioned seeing urology to get it checked anyway. I feel really looked after by Barbara,  she is really straight to the point and will be very thorough when it comes to your concerns.

I also spoke to her about the pain I was getting in my arm, she is going to speak with me when I have my treatment and maybe change my painkillers, I had told her I didn’t want anything that will knock me out or make me feel out of it, but also the stuff I have only takes the edge off slightly. 

She also mentioned taking a vitamin (D3 & calcium) which I say I’m going to do and never get round to buying them for the family. She then told me about a information group she was holding soon that I’d be invited to attend with my husband.

A busy morning followed by lazing on the sofa all afternoon having a phone day with my daughter while the littlist is with my mam for a few hours.

Nursery, Big school & Work

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The time is getting closer, my little man will be going to a nursery 2 days a week, when I go back to work from maternity leave in September.

I will have been off nearly 14 months when I go back as I had a months holiday added to the beginning and end of my 12 months leave. I’m looking forward to a change of routine and some adult conversation the most,  but im not looking forward to leaving the kids.

I am gutted he will be going, and know he will hate being left 😦 but I know he will love it once he settles in, he needs to play with other kids and will get so much from it. The biggest reason tho is I NEED to go back to work, maternity pay sucks and im amazed we have survived this long really.

He had a home visit today, this is where the nursery staff visit him in his own home environment to introduce themselves. I think it’s to have a nosey at your house really 🙂 he was a little shy at first but once they started playing with toys he was happy.

He is going in for a 2 hour visit on Thursday morning and im going to leave him 😦 i’m not looking forward to that! I’m sure I will be worse than him tho and once he starts to play (or its snack time) he will be fine.

I only work 3 days a week and the hours are not too long, so it shouldn’t be too bad, it’s not like he will be in for a really long day. Then once I have picked him and my daughter up we should be home for 4 pm at the latest, ready for tea and family time before bed.

My daughter went to nursery 3 days a week when she was younger, she is very happy and confident, although I think that’s in her nature. She will be starting reception class the week I start back at work and she is so excited.

With her being one of the oldest in the class, she has done 2 years on pre school nursery. She has been desperate to join the ‘big school’ and can’t wait to stay for dinners.

Where does the time go? It seems like not long ago I was returning to work after having my daughter and preparing for her first day at nursery.

So I’m going to enjoy the last week or so of the summer holidays with my 2 monsters before our routine changes ready for nursery, big school and work.

Aches & Pains

My wrist and shoulder hurt a lot today, I was trying to explain it to my husband, its like someone has stamped on my wrist and slammed me into a concrete wall, its like the pain is coming from inside the bone, its really weird trying to discribe it as it sounds so exaggerated and I couldn’t think of something to compare it too. It started hurting yesterday, and by last night it was agony. I’m not a huge fan of pain killers but have been taking them more and more the last few months just to get by.

The problem I have is I can’t take anything too strong,  I get up through the night with the kids sometimes and don’t want to be like a zombie, and I’m home with them through the day and use the car a lot. I was originally given a stronger painkiller by my GP after I’d said paracetamol and ibrufen did not take the pain away, so I’d taken 2 of tge strong ones one  morning, and after an hour I was really foggy headed and not with it at all. I was actually driving the car and a felt floaty, that is never good!

It took a little while to realise it was the tablets that were making me like this, so unfortunately they had to go. They were replace by something not as strong, I don’t feel floaty and out of it, but they hardly touch the pain! Especially on a night time. 

I struggle to get comfortable in bed as my wrist hurts when it bends (impossible if you sleep on your side) and my shoulder either can’t take the weight on it all night, but if I turn over it aches like it needs a support for it. I can’t win, then usually if your really settled and comfy a small person will wake you for something.

I’m lucky so far the pain isn’t a constant, it does flare up tho, its probably bad now as I’ve been running twice last week. The movement of my arms when I run I think makes it flare up more for a few days, I enjoy running and don’t want to stop. Anyway carrying a 1 year old around makes it flare up too, I should probably stop that rather than the running as he weighs a ton these days 🙂

Off to take some more tablets and hopefully get some sleep … Night