Back by popular demand.........

How has it been 4 years??? Ava was 8 earlier in the week and my last picture on here is of her with a 4 balloon!! She has since started school and is now in the Junior school...wow.

As for me, I am back by request! Over the summer I wrote a guest blog for a local website and it was published last week http://cheltenhammaman.co.uk/disabled-maman/
(if you would like a read). I had such positive feedback from friends and family about it, I have decided to try and write more frequently again. I enjoy writing and I enjoy being a support to others whether it is through reassurance or just something for people to enjoy.

There is no time like the present to start writing in this blog again as I have just started a new journey in my MS life. If you have read this blog or know me then you will know that I was put onto Tysabri when Ava was 6 months old to hopefully stop my relapses. For the last 7 years it has done it's job, some would even say that I have maybe even slightly improved BUT a blood test a couple of years ago showed that I was positive to the JC virus therefore I had the potential to contract the potentially fatal brain infection PML. I guess I kind of rode my luck for a couple of years not wanting to leave the safety net of my Tysabri infusion but after seeing my Neurologist last month and him telling me I had a 1 in 100 change of getting PML and the fact my veins were giving up on me and making it harder ti receive the infusion, I have made a pretty big decision and decided to try a different DMD - Flingolimod (Gilenya).

This is a tablet a day, every day, hopefully until they find something better or even a cure (wishful thinking I know!). So instead of spending 2 hours at the hospital every 4 weeks bugging the nurses and hoping they find a vein that co-operates, I now just have to remember to take a pill every morning. As with all medicines there are side effects, I have to be monitored for the first 3 months as there is a part of the eye which can thicken and there can be issues with your white blood cells (not quite sure what though!). I have only been taking it for just over a week and to be honest with you, I feel no different. Which is good, I am not supposed to feel different, I am just glad I don't feel worse. Time will tell and I expect after 7 years, I still have Tysabri in my system. Again, the idea behind the drug is to maintain an MS plateau, not to expect an improvement but hopefully no worse. I have noticed I am a little bit more tired than normal but I do not know if that is work (I am still teaching 3 days a week), being single mummy to a busy 8 year old, as a result of Flingolimod or just generally MS!! I don't think I would have considered it being a side effect unless I had joined a support group on facebook (recommended by my MS nurse) where it seems to be quite a common side effect. The thing is, I know you have to take those groups with a pinch of salt because there are a lot of people on them who think that they are the only person in the world with MS and how can anyone else possibly be worse. Don't get me wrong, you can get some good support from these groups, but just don't take everything to heart.

I have had a rough couple of years health wise (not MS) but lets save that for another day, don't want to bore you too much yet ha ha

Much love,
Em xxx

Heat heat heat and summer holidays!

Hi all,

Well I'm finally on school holidays and already a week has passed. Bump is rapidly expanding and kicking me nicely! Everything seems to be going well with the pregnancy. We have just started to see my stomach moving from the outside which is so exciting and great for Nathan as he feels more involved. I'm 26 weeks now so only have 14 to go! I'm having another scan at 34 weeks to check that baby is growing ok and everything is on course. I suppose that is a benefit of the MS - I get extra special care!

I've not really done a great deal this week as I have been really struggling with the heat. It has been so muggy and humid that I am really struggling to walk anywhere or do anything. I am ok when I first get up and try to do as many jobs as I can before it gets too hot! I think it is just the MS flaring up and slowing down the nerve conduction, but I am sure the pregnancy has something to do with it! I have definitely noticed an improved circulation being pregnant but having always had cold hands and feet it is really strange to have hot hands and feet. Plus it adds to the loss of sensation which is not great but hey I'm not complaining, it will be worth it.

Em x

Baby bump

Hi all,

Sorry this post has been a long time coming, I just forget how long it has been since I last wrote until I get on here and see the date the last post was published! Well as you can see from the pic Baby Richards is developing nicely. We could have found out the sex of the baby at the scan, but we want a surprise so didn't find out. I am now 21 weeks pregnant so just over half way, it seems to have flown by yet it still seems so far away until baby is actually here. We have decorated the nursery this week and got the furniture delivered so Nathan is a very excited builder!

As for the MS........as bump expands, my balance seems to take a knock. My physio warned me that it might happen but I think it might be a long 3 and a half months now. School have been very good and are managing to get all the sport bits and bobs covered for me so I don't have to do anything but teach. As much as I hate it and am determined I don't need it, I have been using my stick for mine (and the baby's) safety if I am feeling a bit wobbly.

I am still trying to swim as much as I can, but it is about finding the energy to get to the pool. I need a pool in my back garden (Nath, if you're reading this - b'day in August!!!). We have not long been back from a week's holiday in France which was great. We had our own villa with own pool which was lovely. We had much better weather than was forecast and had a lovely relaxing week with the family. As a result of that holiday we have decided not to go to Spain on our planned summer holiday in August for a number of reasons.

1. I am not too good with the heat and my MS

2. I will be 28 weeks pregnant and could possibly go into early labour in a foreign country

3. I will only stress myself out with worry about the above and not enjoy the holiday!

So we are now just trying to get our money back for the flights! I will try not to leave it so long next time but you know what I'm like!

Em xxx

P.S If you can't work out the baby scan pic, it's head is on the left and baby is on it's back with it's legs over it's head!

Well done!

Hi all,

Just a quick message to let you all know that my Auntie and friends completed their 60km (38 mile) walk for the MS society on Saturday on one of the hottest days of the year. A superb effort by all involved and many kind thanks from me. I am sure that the MS society will be extremely grateful for the money raised. If you haven't sponsored them yet and still wish to (you have about 90 days to do it!) then follow this link:

http://www.justgiving.com/trisharedgrave

Baby bump is expanding nicely and my trousers are getting a little bit tight around my middle. It's probably the only time you don't mind feeling fat! We are off to see the midwife on Friday morning to hear baby's heartbeat which is very exciting. I am sure I felt baby move last week as well - strange bubbling from my stomach. Hubby Nath was listening to bump last night and was convinced he could hear the bubbles - very strange!

The hot weather does not help my MS. My legs feel even more like lead than they did before! I think with the pregnancy and the MS combined it's a double whammy of fatigue! Well I got a stick from my Physio today which should help if I'm having a wobbly day.

Right I must dash as I have about 50 SATS papers to mark tonight!
Em xxx

Baby Richards!

Hi all,
I'm sorry I have not written for ages but I don't think I could have written on here without spilling the news about baby Richards! I am expecting my first baby on October 31st (and no we are not calling the baby Damian!). The picture above is the baby at the scan at 12 weeks, for those who cannot tell what is what - the head is on the right and that's it's leg up in the air on the left. We have another scan in about 6 weeks in which we can find out the sex of the baby if we want to but we want a surprise so will just keep guessing! I have a small bump expanding, well I know that's what it is, I probably just look fat to everyone else! My trousers are definitely getting tighter but I don't mind, it's all for a good cause.

My MS has not really changed with the pregnancy. I finally managed to shake off the hug (or the little elf got bored squeezing me!) which was a relief. My legs still get very tired, but that could be down to baby, being back at work full time or just the MS. So, I'm back at work teaching full time, which is hard work but I am just about coping. I think it makes it easier to cope knowing I don't have much teaching time left until I go on maternity leave. Access to Work have been so supportive and have provided me with 7 hours of support in the classroom. The support is entirely for me, someone to do my photocopying, put my displays up for me etc. My very own personal assistant! The other teachers at school are very jealous.

Well not long now until we have a nice week away in France. I am just hoping the weather is going to be better than it was when we went last year - it was colder and wetter in Bordeaux than it was in Bristol. We are supposed to be going away to Spain in August but I will be 30 wks pregnant by then and I am not sure I am happy about leaving the country in case this baby decides to make an early appearance, we will see.......

I will keep you updated on bump and how my MS reacts to the pregnancy.
Em x

First whole day of teaching!

Hello everyone,

I must firstly apologise in the delay of this post -I have been told off (thanks Sonia) and am going to try and make up for it now! I just felt that I hadn't done anything to report on, that is until.........TODAY! I am supposed to just be teaching mornings this week but today I thought I'd wait for my supply teacher this afternoon and explain the lesson. Just as well I stayed because the supply teacher didn't turn up. I had to nab a TA from another class to sit in with me. I am very excited though as I taught all day and I am still standing which means things are looking up..............

For those of you who watch Neighbours (I know I'm probably in the minority), Susan Kennedy is about to be diagnosed with MS. She has already blacked out at the wheel of her car and had funny dizzy spells. Last night she picked up a hot dish and couldn't feel it because her hands were numb. I think she is going to go blind from what I have heard (Optic Neuritis) which leads to her diagnosis. It's a very fast tracked version and not everyone experiences the same symptoms as her but nevertheless I think it is good that it is being highlighted by a high profile TV programme.

Emma x

Symptoms

Hi all,
Hope you all had a good weekend and are suitably refreshed to face the week ahead. I'm on half term so have a reason not get out of bed! Normally, holidays are weeks spent catching up with other teacher friends who I haven't had the chance to see and this one is no exception. I had a lovely morning over a cup of tea, comparing our little darlings and what chaos they have been causing! It really is worth making the effort to see old friends.

I didn't get up to much this weekend, just a bit of pampering (well if you can call a leg wax pampering!) and watching the football. My husband Nathan is a Liverpool fan: say no more! He cooked a lovely roast yesterday and cleaned the house top to bottom, so thank you Nath!

I have news on the steroids; I am booked in for Tues, Wed, Thurs this week. I just hope they have the effect I am hoping for. I woke up this morn and my waist was even tighter than normal. I think my little elf has been working out at the gym because his grip is getting stronger!!! Painkillers it is for now. Thought I'd list my symptoms for you to let you know what course my MS has taken. It is different in everyone.

First symptom (2000): Optic Neuritis - In me, I lost my sight and went completely blind for 3 weeks. My sight came back but still a little like I've looked at the sun in the one eye. I now wear glasses for long distance.

1st Relapse, no steroids (Sept 2006): Slurred speech, found it hard to get words out for a couple of weeks. Treated as an ear infection because it was very similar in symptoms which is why I had no steroids.

Diagnosis (Oct 2006): Diagnosed after a couple of MRI scans. Offered a Lumbar puncture, but decided not to have one when Neurologist said that he would be surprised that if showed nothing and he was 95% sure I had MS. Not worth putting myself through the extra pain.

2nd Relapse, first course of IV steroids(May 2007): Numbness in legs, strange sensation to touch (as if legs aren't part of you). Unable to walk very far or stand for long periods. I had steroids and responded very well to them and was back on my feet very quickly.

3rd Relapse, steroids (Sept 2007): I started to get odd sensations back in legs and was unable to stand for long periods. But looking back I'm not sure this was a relapse just a re-emergence of old symptoms.

4th Relapse, steroids x 2 (Dec 2007 til present): Ms Hug (tightness around waist), Numbness from waist downwards, loss of core stability around my middle, loss of balance. I have one lot of steroids and I am now starting the second lot tomorrow.

Ongoing symptoms (that come and go:) L'Hermitte's: When I bend my neck, occasionally I get an electric shock type sensation shooting down my left arm. Uhthoff's Symptom: Increase in symptoms due to exposure to heat, my eyesight gets particularly bad.
Cold Feet and Hands: I was diagnosed with Rayanud's disease but since reading about MS I understand that this can be another symptom. Intention Tremor: When leg is in a certain position. Footdrop: Foot drags along floor during walking.

I hope this is of some use to those who read it. Those who may not yet be diagnosed might find it of some use to understand some symptoms, but those who don't have it may just be able to understand what people with MS go through. As I said everyone is different!

Right, if you are still awake I will say bye for now xxxxxxxxxxxxxxxxxxxxxx

Welcome to my page!

Hi everyone,
My first post, how very scary! My mum suggested I keep a diary about everything I go through, and I laughed off the idea, I said 'who on earth would want to read about my life?', she replied 'other people with MS looking for advice'. So here I am!! I am no expert but if this helps to reassure people or make people smile then I am doing the right thing. As you can see I am relatively young (26), I got married to my wonderful husband when I was 24 and was diagnosed with MS 2 months after the wedding. He had no get out clause then!!! He is great with everything and has told me he is sticking around (I am a very lucky girl!). I am a primary school teacher (currently teaching Y5) and the PE subject leader for the school. I had quite a bad relapse over christmas so am currently not back to work time...........yet!

I went to see my Neurologist today for my follow up appointmentc after a dose of IV steroids a month ago. I had a good response immediately (I couldn't walk on the Tues and by the Wed I could!) but in the following couple of weeks I started to get worse again so this appointment came in handy! The good news is, he is giving me another dose of steroids next week which he is hoping will eliminate more symptoms. I am SOOOOO excited! Hopefully the little elf squeezing my ribs will disappear (tightness around waist and ribs) never to return. Which means hopefully I will be able to get back to work full time, watch this space.....................................