Tough times

Hey all,
So Christmas and New Year have been and gone in the blink of an eye. We had a bit of a subdued one this year as we sadly lost my Nana on 23rd December very unexpectedly. Luckily we had Ava and her board games to try to distract us over the Christmas period! Nana had just turned 96, so had a good long life, but being the only bereavment in the family that I have been aware of, it has been a challenging time for us all.

So to add to those tough times, Ava seems to be going through a stage of 'separation anxiety' and I am finding it hard to know how to cope with it. She has never been the particularly clingy type and I've never had a problem with her not wanting to go to school, until the last couple of weeks. She doesn't want to leave me, she is worrying that something is going to happen to me. She has told me that she is worried that because I disabled, I am going to die sooner than 'normal' people. She has had several meltdowns at school over the last couple of weeks so her father & I are meeting with the schools pastoral manager to see what we can do to help. Another company that has been recommended to me are Gloucestershire Young Carers. They are a support group for children who are taking on the role of a carer for a parent/sibling with a disability or long term illness, and as it is only Ava & I in our household, she is taking on that role. Something I hadn't considered before. I am unsure what is causing this anxiety in Ava at the moment, it might be nothing to do with my MS but I need to try and get to the bottom of it before it gets any worse.

I have only had 2 physio sessions and am due to see occupational therapy on Tuesday so not much progress to report. The small thing of Christmas got in the way! I am still finding that I can go to sleep and think that I have slept pretty well but wake up feeling tired still. It is pretty frustrating.

One little last thing that I almost forgot about........

MY NEW CAR!
I finally have it, only 4 months late! It has hand controls that I am not used to, so it is like I am a learner drive again. I bunny hopped all the way back from the garage when I picked it up. After initial teething problems with the brake being too close to the steering wheel, I am slowly getting used to it and am excited about my future driving life! I have also got a scooter hoist in the boot so I will be able to go to places on my own and be more independent (once I gain confidence using the hoist myself). Even though the car is through the motability scheme, there was a great cost involved in installing the hand controls and the hoist and I didn't have it. I was informed that if you were finding it hard to get the money for any adaptations, you could apply for a grant from the Motability Charitable Grants team. So that is what I did and I was successful and the rest they say is history.

Lots of love,

Emma x

RIPNanaCats ❤

Let it snow (but not too much!)

So another year has passed in the blink of an eye........but lets not dwell on that. Lets talk SNOW!

Snow.....that cancelled my choir show (well postponed)

Snow.....that has given my daughter a day off school

Snow.....that has given us great pleasure

Snow.....that is a nightmare for MS'ers


We have had the most snow that the UK has seen in a long time and it has caused chaos, goodness knows how places like Finland deal with it!  I suppose they are used to it and we aren't.

I love snow, it is beautiful and I was willing it to snow more, but from the comfort of my nice cosy house. Because MS and snow do not mix too well!! Ava was with her dad and got to build a snowman which is great because I can't do that anymore. I did venture out to collect some bits from my car but that was challenging enough itself. I walked with my frame very cautiously but I can only imagine how dangerous it was outside of the safety of my driveway. So yes I love snow, but the aftermath of ice causes me great anxiety. I worry about driving in it as I drive with hand controls and when you brake no matter how gently you think you are braking, you seem to skid.

I also had a Physio assessment last week as I have not seen the team since Ava was a baby and feel like I have lost some strength recently. So I was referred by my MS Nurse and I felt that it was very positive session. I thought I was just being 'lazy' having naps on my day off, turns out it is probably MS fatigue https://www.mstrust.org.uk/a-z/fatigue. It has gradually crept up on me but I didn't really realise. I don't sleep well, which doesn't help. I have to take Gabapentin as a slight sedative to help alleviate this. This definitely helps! I spoke to a fellow MS sufferer who told me that he can't work because he gets so tired and falls asleep all the time. It all makes sense now and I felt a little better that it wasn't just me. The power of hearing that it isn't just you, it makes you feel a little better that there is a genuine reason for it and you are not alone. So if you are feeling this way at all......talk to someone, your MS nurse, your partner, your family, your physio, anyone! You are not alone.

I am being referred for more physio and to see the fatigue management team so hoping that they will be able to guide me and give me some strategies to help me cope. I am still working 2 days a week which is probably a good thing. Although very oddly on the days I work I seem to have more energy and don't ever feel sleepy. This shall remain a mystery!

Bye for now,

Em xxx

Exclusion

I really cannot believe that I have not written since November, only seems like yesterday. So we have had Christmas, New Year and I am already back at school. Seems like a bit of a blur really.

Where to start? Lets start with Christmas. As I am sure many of you reading this can agree, one of the most exciting, lovely but stressful times of the year.  More so if you are a single parent having to 'share' your child/children over the festive period.  Yes my ex and I have alternated who Ava spends Christmas day with every year but this year was the first year that she stayed with him Christmas Eve  and therefore Christmas morning. So I woke up alone, no squeals of delight at 5 am from an excited little girl who realises that Father Christmas has been, no wrapping paper all over my bed, no magic. It was very odd, a complete anti climax. The presents were all under the tree for her and I knew she was with her new family, her dad and his fiancée. I was on my own, and it felt very lonely and I didn't like it. I gathered up her presents and went to my parents house to have Christmas dinner. But first we visited my nana in her nursing home where she is living now. Unfortunately she is suffering from dementia and remembers very little and can be very confused. She was on good form and it was lovely to spend time with her. She is 96 (I think!) and still going strong.

So we collected Ava at 5pm and she reeled off her list of what Father Christmas delivered to daddy's house before proceeding to demolish the pile of presents that I brought for her from our house. She was a very lucky little girl, lets put it that way! We played a couple of board games as you do and had an early night. I was making lip balm at 720 am the next morning, one of the delightful presents from Father Christmas (he really should think more carefully next year with his choice of present!). We had the traditional ham for boxing day and way to much chocolate before taking Ava back to see her dad and his dad and family. After a couple of days, Ava came home and we tried to re-home all her new toys. She had a smart tv from me for her bedroom which she loves. She is growing up.......

New Year - It was again daddy's turn to have Ava and this time his fiancé and 2 girls were staying so Ava was very excited to see them as she doesn't see them very often. Anyone who is separated will know that this a stab to the heart, but reassuring in the same breath. As much as you are happy that the separation was the right thing for you, it is very hard to see Ava so excited to go and see another lady who is actually going to be her 'step-mum' eventually. I am also relieved and pleased that she likes her, one less thing for me to worry about. It is especially hard when she is with them, I am on my own. I haven't found anyone yet, seems MS is a deal breaker. So I gatecrashed some friends (couple friends) plans and went to our local community centre on my own.  It was lovely to get out, lovely to see in 2017 with actual people not virtually or in pj's with the cat. But as much as people try to make me included (and they really do try), I still feel excluded.

I will never 'fit' in again, I will never be able to dance again, people smile sadly at me, they treat me differently, I do not have anyone to share special times with. So perhaps I should try dating again? Perhaps that should be a resolution of mine for 2017 - find a man!!

Please don't feel sorry for me, just treat me normally. I am a human being with feelings, don't exclude me, help to include me......

Love Em x

GO DIVA DOLLz

How can you teach with no voice? The answer is......you can't!!  I managed 2 1/2 days until I was sent home with no voice. Do you realise how frustrating it is? I had to call the MS team yesterday about reordering some tablets and several times the response was 'I am sorry, I can't hear you'. I am now on self declared bed rest hardly talking in the hope that I feel better. I did wonder if it was just another 'MS quirk' to lose my voice but last night I was struggling to breathe through my nose as well as my throat soreness which reaffirmed to me that it was a normal person winter bug!

I had a check up with the MS nurse last week to see how I was getting on with Gilenya. My bloods were all good, they expect a drop in lymphocytes (maybe wrong!!) and mine has dropped to 0.4, but they allow it to drop to 0.2 so all is good in the hood. I explained that I appear to be sleeping a little bit more than I previously had and she suggested that I have a blood test to check my Vitamin B12 and thyroid levels. The trouble is that as an MS sufferer you always assume that it is an MS symptom when actually it could just be something that anyone can have. So blood test is booked in for next week, failing that it probably is good old MS fatigue BOO.

Hopefully the video above works, it looks like it will. ONE PROUD MUMMY. So, mum, Ava & I went on a road trip to the ITDA (International Dance Teachers Association) Freestyle Nationals at Winter Gardens. We set off straight after work/school last Friday on the train. We had 2 changes where we had to hope someone met us with a ramp to get us off the train and take us to our connection....and they did. You have to book assistance (https://passenger-assist.org/assisttravel/TravelAssist.aspx?LAYOUT=BLANK&TOCCode=DLkP6_p3jo9SUbFl9cJ_ZQ==) at least 24 hours in advance. I was surprised by the amount of men that offered to lift, tip or push me off the train, didn't really need assistance ha ha!! We were excited for our trip to Blackpool, none of us had been (mum was born there but left at 3 months old) and couldn't wait to get there!

So we arrived in Blackpool in the dark and had to locate our hotel using the iPhone maps (and yes I did set it to walking before you ask!). Have you ever tried to use it? How does it know what direction you are facing when it says turn right onto Kings Road, it might be our left! Anyway we played the game of 'Locate the dropped kerb' and boy it was a tricky one. There weren't many and if they were 'dropped', I am a brain surgeon. I hit most of them nearly ending up on the pavement. We found the tower lit up and that was a bit of a 'wow we've arrived moment', after a photoshoot we set off again.  Eventually we arrived at the hotel and hit the sack ready for the long day.

Alarm woke us, operation dance mummy. Hair curled, little bit of make up (she doesn't like me doing it incase I poke her in the eye!) and glittered up, off we go. Wow just wow, Winter Gardens is a spectacular and the amount of people and feathers and fake tan and..... I don't know where to look.  We found Ava's dance group and put down our belongings. There were rows of seats that they were sat on but they were inaccessible to me. I felt a little isolated from the group. I didn't feel part of it. Anyway it wasn't about me, it was all about Ava. She did 2 solo's and got a call back for each of them. Unfortunately she did not progress any further but just to have a call back was enough for her. She also danced with the Diva Dollz (the video above - she starts on the left). They danced their hearts out and came 7th in the country. Although it was last in their group, looking at the breakdown of scores 2 judges had actually placed them in 4th place. This is amazing and gives great hope. Just amazing, WELL DONE DIVAS!! Mun and I had to catch a train back before the end of the day (Ava was going back with her dad), again everything went smoothly and I was home in bed by 10pm.

Have a great week,
Em xxx

Busy Busy Busy!

So half term is upon us already. Well actually it is nearly over now already! Where did that go? I think I blinked and missed it somehow!
We had a quiet few days at the start of the holiday then the chaos started. After a 730am start on a SUNDAY, it could only mean one thing. I was a dance mum for the day. As much as I dread the early start, the coach journeys and the hanging around all day, you just do it for your child. You do it for them, because they want to do it. Big shout out to my mum & dad now, I now fully appreciate everything they did for me when I was a child growing up. They took me to training virtually every day and spent most of their weekends roasting on poolside watching me compete in swimming galas. I now appreciate this even more and realise what sacrifices they made. Ava loves to dance and is gaining in confidence by doing it.She does streetdance and freestyle, I personally think she dances well (I know I'm her mum and biased) she now just needs to show the attitude in street dance. She is too nice ! In November we are off to the IDTA Freestyle Nationals in Blackpool. She is dancing with her team Diva Dollz and a couple of solo dances. We are not expecting any medals or places, we are just looking forward to the experience, and apparently it IS an experience of feathers and glitter!!

The following day it was another early start as we were headed for Westonbirt Arboretum,(http://www.forestry.gov.uk/westonbirt) for a walk with my parents and their dog Mollie the cockapoo. We hired a mobility scooter (for a small donation) from them which limits you to 3 hours, so we got there for 10 to make the most of the time we had it for. The trees were beautiful, the colours were amazing, we timed it just right. The new bridge walk way over part of the woodland just adds to the magic of the place. We loved it, I think Ava loved it and Mollie most definitely loved it. My only grumble was the 3 hour time limit on the scooter, we could have spent so much longer there, although we were quite chilly by then. We will most definitely be back.

 So, I am a week and a half into the new treatment, I am just about remembering to take a tablet every day. I might need to set myself an alarm if I start forgetting! I have to take Gabapentin every morning to stop my eyes from shaking (my MS nurse has never known this drug to have this effect on anyone!) so I have put the Gilenya tablets on top of them so remind me. I am pleased to report that I am feeling well, no different really. I had a minor wobble yesterday where my arms and hands were temporarily weak, but when a loved one sees this and worries about you, it makes it worse!!! I know it was only because they care. Anyone else get this? The more people mention a problem or notice you are having a funny 5 minutes, the more exacerbated the symptoms become?

Love
Emma x

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

So this is my not so small 4 year old little girl on her birthday on Wednesday. She is the most beautiful, kind, thoughtful, well mannered child I know.....but I am biased!

It is her party tomorrow, luckily it is at a place called Magicland, so they will do it all for us - great!

Be back soon x

Hello world!

I am back, I still exist and I cannot believe it has been 2 years since I have written on here. I have had several people recently tell me that they admire me and everything I manage to cope with so I thought I would come on and tell you about everything that has been going on in my life over the last 2 years. Boy have I got a lot to tell. Not quite sure where to start! The MS seems a good place to begin......

I have been on Tysabri for 2 and a half years now and I have been very stable during this time, I would even say I have improved and use my frame to walk a lot more, rather than the wheelchair. I discussed the possible use of LDN (low dose naltrexone) with my MS nurse and GP and looks like I could possibly try it, the ball is rolling but I do not have it yet. There are many studies saying how much LDN has helped them so all I can do is be hopeful. Fingers crossed! I have nystagmus in both eyes, which means they wobble. Trouble is one goes up and down and the other goes side to side, it can give me a bit of a headache but blinking temporarily stops it so if you see me blinking a lot you know why! My bladder seems to be the opposite of my friends with MS, it holds on to my wee for too long and I always feel like I need to go and normally don't need to. These are all little MS quirks you just end up living with.

Unfortunately I am facing another big hurdle in my life. My husband and I have separated. I am not going to go into detail but our main priority is being the best parents to our beautiful little girl. Ava turned 4 this week, where did the time go?

I was just trying to upload a pic of her but my eyes keep closing, not had a lot of sleep this week so off for a nap! Will come on later !

Em x

Baby Competition

Hi all,

I know I've been awful at keeping up with this, but it is so hard to find time with a 2 year old and working. She is at nursery tomorrow and Friday and as it is half term I am hoping to have time to update this and tell you how far I have come on Tysabri. But the reason I am writing is to ask you to vote for my girl Ava in a baby modelling competition if you think she deserves a vote!

You should be re-directed to the page to vote for Ava if you click on the title of this post 'Baby Competition'. If not the link is: http://apps.facebook.com/baby_modelcomp/entry/246475

I will post a couple of up to date photos of her.

I'll be back,

Emma

xxx

I've been swimming!

Hi all,

Just a quick post to let you know that everything is still going well and I have had my first dip in over a year in the pool. I loved it (even if I was a little cold as it was in an outdoor pool!). I will most def be continuing even if my legs have felt a little like lead for 2 days!!! Ava is now 19 months old today and walking and chattering. I am hoping to pick up more hours at work next year as this year has gone so smoothly so fingers crossed. Things are looking up!

Em x

Long time, no see......

Hello world,

Yes I am still here and I am feeling very guilty for not writing for so long. So where do I start? Well we have moved to the Bungalow - yay! We moved in at the end of October and love it here. Even though it is a down size from a 3 bed house to a 2 bed bungalow it doesn't feel like it is any smaller. We seem to have much more living space and the bedrooms are big enough. The area is great too, there is a school down the road for Ava (which I approve of!) and all the neighbours have been very welcoming. They are all retired so are always about if I need any help and EVERY week they bring our dustbin in when it has been emptied, which is a novelty in itself as in the last house, the bin was always in the middle of the pavement or our driveway and the neighbours wouldn't have thought about bringing it in for you! Enough about our kind neighbours!!!

I have been back at work for 5 months now and although I only do a day and a half, I love it! I job share the teaching of Y5 with another teacher and only work an afternoon on a Thursday and all day Friday. Ava is looked after by my mum mainly (Thanks mum) and Nathan's mum for those days so we don't pay for any child care. There would be very little point returning to work if we were paying for child care as well as it is so expensive. So we are very grateful to have such great grandparents, although if she becomes any more challenging I'm sure they'll start charging!!! She is the main reason I have not written for a while, she hates me typing and closes the laptop - little monkey!

Ava is just over 15 months now and is into everything, everything that is not hers! She walks very confidently holding on to one finger but has not yet let go and 'gone it alone'! She babbles incessantly to herself and says a few words. I am putting up a picture of her as she has changed so much since the last picture I put on here of her.

We had a different Christmas this year - we went to stay with Nathan's brother out in Bermuda. He has got a 3 year working visa out there and this amazing apartment overlooking the sea. We had a lovely time but it could have been better. The weather waan't great - it was wet and windy and we all fell ill over Christmas Eve and Christmas Day. Nathan and I didn't even make it to the beach on christmas morning for champagne or to eat christmas dinner, we were so gutted!

My MS has been improving (sssh don't say it too loudly!). My walking has improved in the last 2 months and we're not sure why. I had some steroids in November to treat as small relapse (my eye was a bit shaky!) and since then I have felt stronger and done so much more walking. I am even using a frame at school when I feel up to it, not the wheelchair and considering going back to swimming. I've got to make the most of feeling good! Nathan thinks the improvement is due to the build up of Tysabri over the last 8/9 months. Whatever it is - long may it continue! I know I have probably missed things out but I am sure I will be told what. Ava is throwing a strop as I'm not paying her any attention so I will sign off here,

Em x

Moving house, driving, back to school...ALL CHANGE!

Hello all,

Yet again I am in trouble with my family and friends for not updating this. It's not so easy now Ava is a demanding diva of nearly 11 months! I find it hard to get anything done now, she just wants to play, bless her! Well, a lot has happened since I last wrote...I don't know where to start.

In a month since I last wrote we have decided to move, found a Bungalow to move to, put ours on the market selling in 5 days and are currently awaiting a moving date. When I last wrote in July we weren't even thinking of moving. My parents have offered their financial support to enable us to move to a Bungalow making life easier for all of us -big thanks to them! As soon as they had put the idea in our heads we set about hunting for a Bungalow and viewed a few before finding the perfect one. Trouble is, we were in no position to buy it...we quickly got ours on the market and it sold in 5 days, so it all worked out perfectly. We are just waiting to exchange contracts now and get a moving date. So I may be in the new place when I next write!

I eventually got around to driving my new Motability car with hand controls. It is rather scary having driven a car with my feet for 10 years to start using a push/pull hand control and steering with your left hand. Anyway, shortly after I started driving it, Nathan drove it with the foot controls and the accelerator got stuck down. Luckily he managed to control it and pull up in a layby and then turned the engine off. Of course, as a result, I was very reluctant to drive it again. But, I've had to drive it to work and am now getting more used to it.

I am officially a teacher again! I went back to school last week and am contracted to work a Thurs pm and all day Fri. I really enjoyed it but was totally shattered! It was actually very strange for me...going from a relatively fit, active person who could walk unaided when I left to have Ava, to coming back in a wheelchair not be able to teach in the same way I used to. But I coped with driving there and back, and teaching some very successful lessons. It felt like I was getting a little bit of my old life back which felt great. I just need to get back to swimming now!

So, it feels like a new start for us...a new house, new car, back to work, all with our little girl. Wish me luck!

P.S I have my 6th infusion of Tysabri next week. I sometimes feel like I am getting stronger but I can safely say that I am no worse...which is the main thing!

I am still alive...!

Yes, I'm still here, I've just been very naughty and not updated this in a while. It is getting harder and harder to find a spare few mins to update this as Ava doesn't sleep very much in the day and wants constant attention when she is awake! At this very minute she is kicking our sofa to get my attention as I am ignoring her!

We had a great holiday in France...it seems so long ago. Ava was a very good girl on the plane, and everyone was so great getting me on the plane too. I got to drive my scooter pretty much up to the door of the plane and then they took it off me and loaded it straight away. It was a great service (thank you Easyjet)! So if any of you are worrying about going away on a plane, DON'T WORRY! Just pre-warn your travel company and you will be treated like royalty. We had some mixed weather out there but we still managed to get a nice colour. The picture below is of me and Ava on my scooter.

I can't believe it is only 5 weeks until I go back to work. I am only going back for an afternoon and a full day but I haven't taught for over a year...what if I've forgotten how to teach?! I have been lucky enough to get money from Access to Work to pay for a support worker for the whole time I am teaching and they are buying a very expensive lightweight wheelchair for me to use at school. I am really looking forward to going back, although I've been warned, I have a naughty class this year! School have been fantastic about helping me get back to work. I just want to get stuck in now!

For those of you who knew I had a car on the Motability Scheme, I have finally driven it. I got it a few months back and it has been sat on the drive as I was a little nervous to go out in it. Using your hands to drive is so strange and needs a bit of practice. I found the hardest bit was knowing how far to turn the wheel, with just your left hand, to get the turn you wanted to! But once I get a little bit more confidence, I know it is going to be great.

I have now had 4 infusions of Tysabri and think I am feeling the benefits already. There are little things such as typing, lifting my toes up and sometimes my walking that seem to have improved. I am still writing about Tysabri on the MSRC website so if you want to check it out, the link is on a post below

I am sure that someone will tell me if I have missed anything out on this post!

Emma

P.S Just had to put another pic of my beautiful daughter on!

Au Revoir....for now!

Hi,
I am very excited as on Saturday we are off to France on our first family holiday and Ava's first flight! I'm just a little concerned about the amount of luggage we have....2 suitcases, a set of golf clubs, a pushchair, a mobility scooter and a wheelchair and of course a baby! Luckily we are going with family so we have got extra hands to help out! We are also going with my Auntie and Uncle and cousin. We have got our own villa and pool so I am hoping to do as much swimming as possible to try and build my muscles back up. It will also be the first time that Ava has been swimming, which if being in the bath is anything to go by, she will love it!

I forgot to say, I am going back to work in September. There is no way I could return as a full time class teacher so the school have agreed to a job share. I will be back teaching year 5 but only for a day and a half, I am actually quite excited. I may also do a bit of private tutoring from home if I can get someone to look after Ava for the odd hour or two. I think we will just see how I cope in September to start off with.

As for the Tysabri, there is nothing really to report. Some days I feel really strong and my legs are good (for me) but other days I am exhausted. But I have only had 2 infusions and they have told me that the benefits build up the more infusions you have.
Bye for now
Em xxx

Link to my Tysabri Diary

Hi all,

I have just checked the link on here to my Tysabri diary and it doesn't seem to work anymore. Here is the link which should work:
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2862
If it doesn't work go to www.msrc.co.uk and there is a link to Tysabri diaries on the front page and you find 'Emma's diary' there.

Happy reading!
Em x

Hospital Stay!

Hi guys,
I have a genuine reason for not writing this sooner and updating you all on my progress.......I have been in hospital for the last 5 days! It all started a couple of weeks ago when I wasn't feeling 100% but I couldn't put my finger on what was wrong. My symptoms could be really good one day but really bad the next. I woke up last Thurs morn and my legs didn't want to do much at all and it took me a very long time to even get dressed and get downstairs. Nathan took the day off work to help me with Ava, by midday I felt better and almost sent Nathan to work. Come the evening I had a very high temperature which affected my vision, my legs weren't doing anything and I couldn't hold anything. To cut a long story short I ended up being taken to hospital in an ambulance. Of course we were all panicking about the dreaded PML. After a number of tests it was established I had a nasty kidney infection which then led to another discovery of a new kidney stone, which I do not need! I hated being in there away from Ava but I had to have a course of IV antibiotics. Nathan, my family and the in-laws were fantastic in looking after Ava so Nathan could still work, and also feeding him so he didn't have to worry about eating.
The MS team are sure that it wasn't the Tysabri that made me ill, unfortunately it just makes you prone to getting infections. And as I am prone to getting UTI's (Urinary Tract Infections) I'm not surprised.

I had some very sad news a couple of weeks ago, my coach at swimming passed away. Mike was so inspiring, even when I was diagnosed with MS and I couldn't train as hard as I used to,he always encouraged me to keep going. He leaves a big empty hole in our swimming club and will be sorely missed. RIP Mike xxx

My next infusion is on May 29th so watch out for my next installment on www.msrc.co.uk
Bye for now,
Em xxx

1st Infusion of Tysabri

Hi all,
This is going to be a very short post as I am shattered to say that everything went well with the first infusion. They took 3 attempts to get the cannula in but once up and running it was fine. Felt a little sick last night and today I am so tired that my body doesn't want to do anything. I am hoping that this fatigue will pass, I will write again soon in more detail.
Here's to positive thinking that the Tysabri will help,
Em xxx

Where do I start?

Hello all,

Yet again, it has been longer between posts on here than I would have liked so I have lots of news to share. Firstly my beautiful baby girl is over 6 months old now. I can't resist sharing another pic of her with you:

She is a good girl and is giving us a good nights sleep which is much appreciated and helps us get through the day! We are just getting her first passport and the photo above will be her picture. We are going to France in June with the family which will be lovely. I just hope she is ok on a plane.

It was Nathan's birthday back in Feb and I promised him tickets to watch Liverpool play at Anfield. I was unsuccessful in my first attempt but successful on the next. We are going to watch them against Newcastle next Sunday. You see, I say attempts to get tickets because if you want a disabled ticket you have to apply with all your details and then names are drawn in a ballot to see if you get a ticket. I have a wheelchair ticket and you can take up to 2 assistants (who are free) so it's a fuss to apply but well worth the value. We are also in the Kop grandstand and if you know about Liverpool that is the place to be so Nathan is very happy!

I went for a driving assessment yesterday for adaptations to my car to get me back on the road. It was very exciting but also very nerve wracking. My eyesight was tested and it wasn't very good due to the damage caused by Optic Neuritis but it was legal to drive...phew! I went out and had a drive of an adapted car - very very scary after driving with my feet for 10 years and not driven since August last year. But I started to pick it up! I am getting a steering lever for accelerating and braking (just a push/pull lever) and a steering ball on the wheel. Will definitely take some getting used to but will keep me a bit more independent.

Tysabri, Tysabri, Tysabri....I start it on Monday (27th). I am very excited but a little scared. I just want to get it started now. Of course I will keep you up to date with how it goes. I am also doing Physio once a week and using tilty table things which enable me to stand up straight for a short while and not look like the Hunchback of Notre Dame!

I think that's all the news so far, bye for now,

Em xxx

Tysabri

Hello all,

Well, as the title suggests I am starting Tysabri treatment. I saw my neurologist last week and he said that the scan had shown up new lesions so I was eligible to try Tysabri if I wanted to. So I am going to go for it and have been given April 27th as my start date. I am going to be writing a Tysabri diary of my experiences which you will be able to read on the MSRC website (http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2336 )

He also pointed out from the scan that I was currently having a relapse (which I suspected) so they gave me another course of IV steroids last week. I responded really well to them until 2 days after the course finished I woke up in agony. I have never known pain like it. My knees felt like they were grinding together and I couldn't even stand up. It was pretty scary. I suspected it might have been all linked with a water infection and was given antibiotics for this the next day and the pain everywhere else started to subside. I don't want to ever experience that again. But on the upside, although weak, my legs are stronger than they were.

As you can see from the picture, Ava is getting big now. She was 5 months last week. She makes all these problems bearable. And I must mention my wonderful husband who is such a great support for me. Plus he told me I don't mention him enough on here!!!!

Em x

Where does time go?

Hi guys,
I am so naughty not updating this for a while. I don't know where the time goes.....actually I do. She is called Ava and is the biggest time waster I know! Can you believe she is 20 weeks old today? The picture above is of her meeting our friend's little boy Joshua for the first time. He is 3 weeks younger than her. They were sooooo cute together. We went to see them at the weekend and just stayed in, watched the rugby and had a takeaway with a glass of vino. It was a welcome change of scenery for me.

My new car is due to be here at the end of March. I have to have a driving assessment in a couple of weeks to see which would be the best adaptations to the car for me. I'm a little scared as I haven't driven since August last year. I'm sure it will be fine though. I have also ordered myself a scooter. These 4 walls are finally driving me insane, it is like groundhog day every day. At least with a scooter I can strap Ava to me and go for a bit of a cruise ha ha!! Nathan has just bought a new car (a mondeo) so it has enough room for me, Ava and all our bits and bobs.

I had my MRI scan on Wednesday, I forgot how loud and boring they are. At least it's done now. I spoke to my MS nurse yesterday because we'd talked about steroids after the scan. My neurologist is going to see me next Tues instead of the 24th to discuss the options. I am hoping he will have the scan results so if I'm eligible for Tysabri we can get cracking with it.

That's all for now,
Emma x