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!

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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.

Hi, can I place a food order for delivery please?

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Life moves so fast for everyone these days I suppose, you don’t need an illness like MS to run you down. Life has a way of doing that for you. I’m trying to stop it but so far i’m just clinging on for dear like and hoping for the best!

Like yesterday, I was running around like I was superwoman as I had all the energy in the world and a million things that needed done, but boy i’m paying for it today.

I was up at 6, showered, dressed for work (hair washed, dried and straightened with make up on!) and breakfast all done for me and the kids to be leaving the house at 8am! This on its own is a HUGE task in itself.

All in the car, dropped my daughter off for breakfast club at her school, then me and little man back in the car to drop him at nursery. I then stopped at the shops for nappies and veg and was at work for 9am! Still feeling great at this point

Finished work at 2:45pm, back to collect my daughter from school, then off to collect little man from nursery, meeting my husband from work on the way home and 4 of us back in the house just before 4pm.

Quick tea was made for the kids (ham & cheese toasties with cucumber sticks.) My mam then came round as me and we were at our 3rd session of ‘making sense of MS’ so off out we go again. I’m the only one who drives so back in the car, i’m tired now and could do without going back out but it’s our last week so off we go.

The session was good, I enjoy spending the time just me and my husband out the house and able to have a conversation with each other. It was a question & answer session this week with a visit from the MS society too, there was also lots of information to take away to read later, some things I’d not even thought about either and some good ‘just incase’ stuff too. I was glad we went.

By the time we were finished and home it was after 7pm, and yes both kids were still awake (but thankfully at least clean and in pjs) We didn’t eat till late, and of course ordered a take away (no good for me at all!) We were both tired by now and ready for bed. Thankfully both kids sleep through most of the time so we at least had an undisturbed night.

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Not all my days are as mad as this, I only work 3 days a week and try to avoid any manic evening appointments, but it shows how easy it is for things to get too much too quickly for anyone.

Some things I have no control over,
• School/nursery run & work.
Then there is:
• Shopping/appointments and kids activities, these happen but are not as strict, I could always re arrange,  cancel or ask for help.
Then I have things like:
• Housework – washing clothes is a constant with kids, cooking – meals for kids, snacks and then an evening meal for us.
Then finally if there is anything left it’s spent on:
• Quality time with my husband – family time for us all or time to ourselves to recharge.

This is hard for anyone who works with a family, and would be hard regardless of MS I think. I’m just still trying to find a balance I suppose, my daughter is 5 and little man is 14 months, I’ve not long gone back to work from maternity leave too.

I find, I’m starting to have to make choices on where my energy goes. Usually the things I don’t have the energy for are the shopping and cooking. Asda on a Friday afternoon with a baby in tow is bad enough,  carrying the shopping up a flight of stairs at home is a nightmare.

The cooking is where I quit most of all, after a crazy day I can’t face making a meal at 8pm eating it, and then doing the dishes and tidying up before bed. I need to stop this as bad food = bad health & less energy and the whole cycle continues.

I need a good plan, the trouble is its 20 past 8 at night, the kids have just gone down (littlist put up a fight tonight) I’ve not made anything for tea yet and I don’t have enough energy to think straight let along make a plan today.

Maybe tomorrow. Or maybe not.

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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!

What a week!

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Well Monday was my first day back to work after 14 months of maternity leave. It was so nice to be back and it was nice to be ‘me’ again for a few hours, I work in a small busy office with some lovely people and I’d forgotten how nice it can be to be working and not just a ‘mam’ at home and school.

Definite highlights of returning to work are drinking a cup of tea while it is hot,  going to the bathroom alone, chatting about things other than Dora the Explorer, being allowed to think my own thoughts for a bit without interruptions was lovely too, I had forgotten what it was like when my head wasn’t racing at 100 mph with the stress of home, work is just as busy but it’s a different kind and I feel more productive.

Not so good things were, my arm and wrist ached really bad from all the writing, typing and paperwork, I’ve had to take a lot.of pain killers to get me through this week, i’m hoping it’s just because I’m not used to it. The hour at the beginning and end of my work day which is spent dropping off and collecting the kids is ridiculous, I have to go miles out my was to drop the youngest off first, then come practically home to take the eldest to school and then head back the way I came to get to work. Finally I was surprised how exhausted I was by lunchtime on Wednesday,  I was actually watching the clock and could feel myself going slower and was ready to sleep. It’s a good job i’m part time and only work Monday – Wednesday or I’d have been in trouble.

Since I’m only at work the first half of the week I get to spend Thursday and Friday at home. My daughter has just started reception class so for the first time since he was born me and my little man get two whole days together. My daughter is loving ‘big school’ and is  thrilled to be staying for her lunch, she has a lot of friends and has settled in amazing, although she is exhausted by the end of the day. My little man didn’t really get a lot out of our two days together this week tho, he is full of cold so we mostly spend them in the house. Think I might try to find a play group on a Friday to take him to next week, there is a sure start centre close to us which has a sensory room he would love too. Feel a bit bad we don’t do a lot of these things, but over the 6 weeks we had to do things that were suitable for both kids ages, he will like some things just for him.

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It was also my wedding anniversary this week, me and my husband have been married for 2 years and I got the most beautiful card and flowers from him, they were gorgeous. We have been together for 12 years and got married after 10, he is my best friend and has been amazing this last year too 🙂

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Ok enough slushy stuff…… My next stress has began already! 

My a daughter is 5 next week and we have organised a disco for her, this was what she requested and honestly it has been a nightmare and cost a small fortune! The venue we had suddenly closed and when the brewery went in the person had taken the deposit and book showing we had paid for a party! After a lot of stress and phone calls we have a room and our deposit has been honoured. I just need to pay the remaining balance for the cake, confirm times with the princess who is making and appearance,  go in and decorate  the room and fill the party bags! Then at some point pay the dj, princess and venue for the food!

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NEVER AGAIN!

I’ve just gone back to work so money is tight as it is and I’ve had to pay the nursery £360 last week for my little man to attend 2 days a week.  We are officially skint now, oh dear, well I’m sure the kids will love it.

Went for a run last night,  didn’t do as good as I wanted and we walked half the way back. Think I was just so tired after this week,  they had just finished clearing up after the GNR and there was a few runners out, noticed how dark it is getting now on a night,  it was very blustery too – definitely autumn setting in. Might try to go again on Sunday night, will see how I feel.

Going to have some family time this weekend and then do it all again next week!

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.