Spoke to soon :(

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I’m tired and want t sleep but It seems both kids are coming down with something 😦

I picked my daughter up from school today and she seemed to have a sore throat and a cough. Not too bad, unpleasant, but everyone gets something. However I want to go to bed now and not only can I hear her coughing,  but littlist boy is coughing so badly he can’t sleep!

Im currently sat in my bed with little man now trying to get him back to sleep. It seems to be quite a ticklish cough as it just won’t stop and a soon as he does he is waking himself up, he is clearly exhausted too just like me!

I have a feeling it’s going to be a long night, and to top it all off I have work tomorrow too – MUST GET SLEEP!

Infection & Infusion

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I will honestly say that it’s now October,  i’m on my 3rd month of treatment and I still don’t fully understand how everything works.

2 days before treatment day and I wake up through the night with symptoms of a water infection. Now I know one of the side effects of my treatment is water infections, I had mentioned I’d suffered with these for years when I was speaking to my MS nurse and the Dr has never really done much about them. I am in the process of being referred to urology by my nurse to see if we can work out why I get them anyway I was worried I wouldn’t be able to have my treatment with an infection so I rang my nurse and asked if I can drop a sample in to be checked.

Treatment day, the symptoms have died down and I’ve not heard anything back about my sample. So I’m all hooked up ready to go. Going through the check list with the nurse and I mention my possible infection,  things are checked and I DO have a water infection? another sample given and calls to the MS nurse, then it’s decided I can still have my treatment I just need some antibiotics. Not sure if I should be concerned,  but I was just glad I could still have my treatment

How bad is infection with tysabri?  what will it do? anything?  mot much? how concerned should I be about infections? I told you I still don’t quite understand!

I did have a great time on the ward tho, there was some right characters in with me and it was a great laugh! It’s always a good atmosphere and I feel really comfortable there, the nurses are starting to remember me and it’s not daunting at all, my chair even reclined this time so I had little to complain about. I’m nearly finished my book too so going to have to start looking for another good one to read soon.

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I am determined to not be ill this winter, I have been taking my vitamins and had my flu jab, but with two small children who will pick up everything going I need to keep myself going. I just don’t have the time to be ill. I also don’t want to take time off work, I don’t want to have to explain myself and im worried it will make me look ‘sick’ and I’ll become unreliable or people with think I’m playing on it, it’s easier for people to say how well your coping.

The weather has really changed today and it really feels like autumn now. The kids have there dressing gown and slippers on and the cosy bedding has came out too. Not bad for making it to October.  I’m just hoping for a mild winter with as few bugs as possible for us all. There is nothing worse than having a poorly household.  It just bounces from one to the other and it’s exhausting!  I remember the vomiting bug from last year that had my washer running constantly with nowhere to dry everything.

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I do actually really like autumn & winter, I prefer cosy dark nights to long sunny days. It’s homely 🙂 Soup, pjs, cosy blankets & mugs of tea – bliss.

Is knowledge power? Or does no one know what’s going on?

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Me and my husband have been attending a ‘living with MS’ educational session organised by my MS nurse. It’s spread over 3 weeks and we have done 2 classes so far. It’s interesting to know the science behind MS and it has helped us understand a little more about what happens to your body and how to explain  MS to others.

It was described as your immune system attacking your nerve coatings in your central nervous system,  which is probably the easiest way I’ve found to explain MS to people yet. It was also interesting to see the map of the world with where most cases of MS are, I had no idea Scotland had the most cases of it. Living in the North East of England we are pretty close to them.

What I’d have loved to learn more about was the nutritional side of things, especially vitamins and good foods. It was a shame that this part was skipped over a bit as the person who was coming to speak to us couldn’t make it. I find the Internet full of wacky ideas for MS ‘diets’ which are all looking awful to be honest,  I’d have liked to explored this side a bit further.

Next week is our last session and it’s a question answer one with a visit from one of the MS charities who is bringing some information for us to look at. I was expecting something a bit better from this but I suppose it’s better than nothing.

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I’m still finding myself overwhelmed and although knowledge is power and I understand some aspects of MS a bit more, i’m still struggling to find a place where I fit in or any information that is relevant for me. Maybe it’s just one of those things that takes time to click into place? maybe I’m looking for something to explain everything to me, and maybe that’s what everyone else with MS is doing too.

Still a bit lost but plodding on as normal – waiting for something to click into place.

10 things that makes me happy :)

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I wanted to write 10 things that make me happy, not people, as everyone has amazing people who make them so happy in life, and yes I have mine too. I wanted to write a few little things that make me happy, brighten my day and make me smile.

#1 A hot cup of tea, in a big fat mug when you can actually sit down for 5 minutes. 🍵

#2 Flowers – instantly brighten my day, in the park or a bunch given to me, I love seeing them. 🌻🌼

#3 Pajamas – as soon as I get home and im in for the night I have my pj’s on. Heaven 🙂 🌙🌛

#4 Getting my hair done – (this does not happen often enough) I love it when it’s just been cut and styled and you walk out of the hairdressers feeling amazing.

#5 Movie days – i love it when the weather is cold and me and the kids stay in and watch movies in our onesis with popcorn.

#6 Pizza 🙂 chilled out Saturday night, no cooking or dishes to do, hot pizza to tuck into! 🍕

#7 Reading a good book – i love it when you read a book that you CAN’T put down, I love being engrossed in it and unable to wait to see what happens. 📖

#8 Sunny days driving with the windows down in the car and some good music on – everything us better with sunshine added! 🌞🎶

#9 A hot shower when you feel like you have scrubbed several layers of skin off and your all fresh and clean – even better with clean pj’s and clean bedding too. ⤵

#10 My bed! it is the best place in the world to be, it’s so comfy and I look forward to getting into it each night!

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Of course there is people who make me happy and these are so important and irreplaceable to me.

My family, from my amazing husband,  my gorgeous and clever children to my life saver of a mam. I wouldn’t function without these people and im so happy to have them in my life. 💟

My friends for similar reasons, my best friend who has seen me at my best and worst, and still has the kettle on at a moments notice! The friend’s I can talk to about anything,  who make me laugh,  who spur me on don’t judge me. I’m happy and grateful they tolerate me!

The big and little things make us happy so try to appreciate them all.

My body for not giving up on me yet!

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.