Happy Birthday to me 🍰

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I am sat in bed with a cup of tea and peace and quiet from the children thanks to my lovely husband 💟

Going shopping later to buy me lots of lovely things and a rare night out while the children are being watched.  It’s been over a year since the last one!

So happy birthday to me today 🎂

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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 

 

MS & being a Mam of 2

The most exhausting thing I deal with on a daily basis is without a doubt dressing and changing my one year old.

He is at that age where they fight you every step of the way, he will scream, kick, roll over, pull his clothes and nappy off and generally do everything is his power to escape from you. This usually results in some pretty interesting ways to get dressed, and no amount of toys or objects will keep him still now for a nappy change so the best plan I’ve found is to always just dive in and hope for the best, and keep telling yourself he will grow out of it.

All kids do this, my daughter who is nearly 5 went through this, I remember the desperate battle to change her clothes, fasten her coat and put her shoes on. It was a struggle back then but im finding it especially hard with my hand and arm as it is.

Things I struggle with now is my right arm and hand. My fingers don’t function and I have no grip, my wrist hurts and has no strength and my shoulder constantly aches. I find buttons and poppers difficult when the kids are still, having to hold a screaming, kicking child takes twice as long and causes a lot of pain in my arm.

My little boy has only just gone 1, I know this goes on of a while and is then replaced by other things:

● Going rigid when you try to strap them in the pushchair or car seat. 

● Flying legs when you try to put them in a highchair or shopping trolly.

● Going limp or lying on the floor refusing to move so you have to carry them. 

● Running away/having a tantrum so you have to carry them away.

● Being too tired to walk so needing to be carried.

All these things i’m sure I will find difficult when I come to do them second time round. There is 4 years between my daughter and son, and things just don’t work like they used to. Fastening my daughters buttons on her school cardigan, putting plaits in her hair and getting a zip fastened are really hard tasks now and it’s really frustrating. This is before you even count sleepless night and early rises.

I’m hoping they look after me when they are older after all this!

Let’s look after me

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I went for a run last night, it’s been about a month since ive been so really sore today 😩. I didn’t realise how much I missed it, I think I need to make sure I have time to go at least once a week, especially while the weather is still fine. It’s great for clearing your head and getting out of the house.

I first started running last year. It was something I always wanted to do but never thought I could do it, I barely walk places, always take the car and have no fitness ability at all.. Me and my friend just run up and down the coast beside our house, which is 5k and a beautiful route. With having 2 kids under 5 I don’t get a lot of time to myself, so I usually get the kids in bed and head out at about 8 pm. In the summer this is amazing, and the views and coast line are gorgeous,  in the winter it’s bitter cold and is so pitch black it looks like a horror movie  😱

I started originally because I wanted my body back after having my son, we had decided no more kids, I wanted to feel fit and healthy and run around with my kids.  I had joined slimming world about a month before and was loosing weight but wanted to exercise too. I also wanted something for me, some time to focus on myself and to get out for a bit.

After we had been running for a while we decided to aim for something, so we entered a 10k race. We completed this in July of this year raising £285 for Macmillan in the process. It was an amazing day and I totally got the bug, I love the freedom of running and the atmosphere of a race. I wanted to do more, our aim is to enter the GNR next year and complete some more 10k races alongside our training.

All this was before my diagnosis,  this was me 2 stone lighter and the fittest I’d been in years. So why in the last month have I been totally off track?

My MS hasn’t changed me as a person, it has given me more to think about tho. I want to be as fit and healthy as I can be for as long as possible.  I want to run for as long as I can, I want to take care of my body so I’m as strong and in the best shape I can be. But most of all i just want to be the me I was before.

This isn’t really about my MS I suppose,  it’s just my life and what I want to do and MS won’t get in the way of that if I don’t let it.

When MS was very first mentioned by the Dr I thought there was no way it could be, I knew very little about it but thought of people tired and with mobility issues and that was not me. I remember telling my running partner and saying “it can’t be, people with MS don’t run!” Well I do and I will carry on as long as possible. 

Look out for more medals 👟🏃