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 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 🙂

Exhausted, but home!

I’m finally home after 6 1/2 hours! Exhausted is not the word 😦

A&E took my bloods & ran an ECG aswell as giving me a full check over. They have concluded it’s more than likely a side effect from the tysabi and to keep an eye out for any further symptoms or changes.

What I don’t understand is, why didn’t the day ward where I had my treatment on Friday see me and do this? Instead I was left with doctors who had never came across this treatment before. 

My MS nurse is on holiday,  i’m a newly diagnosed patient who has only just had the 1st treatment days ago. The only point of contact I had was the ward who gave me there number telling me if I feel unwell at all I MUST ring them. I did that and was told to go to walk in or a GP who have then sent me to A&E to be checked! I just expected a bit more aftercare,  if it was normal for me to feel this way, or of the side effects were to be expected surely they could have said that when I rang them.

I will mention this to Barbara when she is back from holiday as I need a point of contact for cases like this. I was following the instructions of the nurses on the ward for what I need to do if I felt unwell. I just felt like I was bothering people and then dumping it on my local A&E.

Gutted I missed putting the kids to bed too, but little man has just woke up so stole some cuddles there 🙂

But anyway all seems well, i’m going to bed now for some much needed sleep ZZZZzzzzzz

Oh almost forgot! The fire alarm went of when I was in A&E! How weird is that?  anyone would think it was me at this rate!

I’m not naive enough to think this is a miracle…..

…. But I am positive enough to believe it’s a chance.

I’m struggling with the doom & gloom of the Internet. I suppose everyone is doing what I am – having there very own honest say, I just didn’t expect it to be so negative and hard to read about. I feel I don’t belong in this ‘group’ I don’t feel ill, i don’t have all these awful hardship others have. That’s not me, I have got MS and am going through DMT. I’m in no way in denial about that, just maybe a bit lost as to where I fit in.

Im a very positive person the moment and in quite a good place, I know many things may change but I will deal with that as, and when it happens. I can’t bring myself to sit and think about the ‘what if’s’ it’s such a waste of time and quite a boring subject to me. If I stop and do that I may miss out on the other important things going on in life!

I’m struggling to find a place to be content, somewhere I can have a balance.  I don’t want to keep talking to people around me about this as they don’t understand, and i find it hard work explaing everything all the time. The ‘support’ places and stuff I’ve found are not for me right now. I feel I don’t fit in as I’m not part of that clique either.

Maybe I am in denial, maybe it will take things to get worse before I realise this is serious, but for now my life hasn’t changed since last week and quite frankly I have too much other stuff to do.

I have 2 kids birthdays to organise, my baby boy is 1 this week and my daughter is coming up 5, so naturally she wants a disco like all her friends have! With a frozen cake and a princess! Then there is back to school stuff to do, my big girl is starting reception in September and I need to settle my lil boy into his nursery place before I go back to work from maternity leave in a few weeks time.

After I have sorted all that out I want to do something special for our wedding anniversary (about as special as you can get with 2 kids under 5!) It’s our second anniversary and to be honest the 1st was a disaster,  I had just had my little boy and he was in special care after he was born. We hadn’t long had him home and my husband had went back to work, so no 1st anniversary for us or birthday party for my daughter last year This year I want both to be special, but just like always life is crazy busy and costs a fortune. I have nothing to whine about and no time to do it if I wanted to. My family keeps me busy for now and I’m lucky to have that.

I’m also glad for the treatment, it sounds positive and hopefully can keep me fit and mobile for as long as possible. I’m not stupid tho, I know you can’t cure MS but why is it so strange to be grateful for the chance that DMT can give you? After all shouldn’t you always take a chance if you get one? And if it doesn’t help then I tried and ill try something else. I have options, which is more than some people have.

Tysabri & fire alarms

Today was my 1st treatment of tysabri,  it’s been a long weird day really but not as bad as I was expecting.

I was really nervous this morning, i’m not sure why? I wasn’t worried about the treatment, i just felt a bit nervous, like how you get before a job interview or something. I was half wanting to get it over and done with and half wanting to stay home. I think It was more fear of the unknown than anything else – a bit silly really!

When I got to the hospital I was early and had my book ready? I knew I would be here a while and wanted something to do to take my mind off things. I was walking through the car park and a fire engine came blaring past and pulled up outside one of the other units! I was half way along the corridor when I had to stop due to the fire alarm going off inside the wing i was going to! Typical! – this was not a good sign :/ but It was a false alarm in the end and after a long wait I got inside to check in.

I was sat in the ward waiting for a chair to free up and it was quite a relaxed place. People were reading, playing on phones & tablets or just sitting chatting with each other. Later when it quietened down people even went to sleep! The nurses were lovely too, you could tell they knew the patients and were asking about people’s family’s and jobs, everyone seemed really relaxed and comfortable in the ward.

My appointment was at 11 but it must have been a busy day and I suppose the fire alarms didn’t help either. I didn’t end up getting seen till half 12, it was 1pm by the time the drip was connected. I was starving and tired and already wanted to go home.

The needle bit was fine, they put the cannula in and a flush through first and then after that they hooked me up to the bag with the tysabi in it was set for an hour for the drip to go through, then i had to stay for an hour afterwards to make sure I had no reactions to the treatment. 

The fire alarm went off again while i was in the ward but we didn’t need to evacuate or anything exciting like that, it just woke the sleeping man beside me up and made the 2 women across from me complain about the noise! One of the men said every time the fire alarm goes off as a false alarm the hospital get fined £500! Not sure how true that is but if it is they lost a grand today while I was there!

I was then saved by a man bringing round lunch, yeah, who knew there was food, I’ve never been so grateful in my life. After a beef dip sandwich (I almost inhaled this I was that hungry) and a cup of tea I felt better and was having a great time. I got started on my book, with my feet up, comfortable and relaxed with my drip doing its thing beside me.

I never usually get a chance to read at home with having 2 kids under 5 there is just not the time, and to eat without sharing AND have a hot cup of tea is almost unheard of, it was bliss 🙂

Most people had now left and it was quieter with only a few of us left, it was really relaxing and I can honestly understand how people can sleep during this. More tea was provided along with biscuits and I was having a lovely time reading.

I found the treatment easy and nothing bad at all, I suppose I’m lucky as a lot of the people in the ward had mobility issues and other problems (i’m not sure everyone was there for the same thing as me) I have not seen any side effects either so far so I’m hoping it’s this easy every time. I’m already looking forward to my little bit of peace and quiet next month.

Feeling very blessed today 🙂