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.

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.

Coffee & Cake

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My cousin hosted a coffee morning for Macmillan yesterday. I decided to make rocky road bites with all the birthday chocolate we had accumulated last week from my daughters birthday, they were delicious and no good for my diet at all! The cakes people bought & made were lovely, and it was really nice to see the effort people put in for this charity.

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My cousin has cancer and has dedicated so much of his time and energy to supporting so many charities
He is doing things from this to running the GNR, sky dives, zip wire challenges and so much more, he is quite an inspiration and never complains

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Lots of family amd friends came too and it was lovely to have a catch up and to see how everyone is doing. A really nice morning and hopefully lots of funds raised for a great cause.

Proud to support Macmillan.

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 🙂

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