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