Category Archives: Chronic Illness – FND

One Year with FND

It’s been a year now since I got diagnosed. 

I’ve been unwell for a lot longer but a year ago to the day I got admitted to hospital to the neurological unit. 

They diagnosed me with this thing called Functional Neurological Disorder that I had no clue what it was. I had never heard of it. All I knew was that it was here to stay, they had no idea how much better I could get and there was no tablets to take. 

A year later I can honestly say it’s been a tough journey. There’s a lot I have learnt and there’s a lot I still have to learn. I thought having an answer would bring relief but honestly it’s brought more questions and complications.

It’s been a hell of a ride and I thought I would share it with you. 

I had no idea a year ago what FND was. All I knew was this recovery was going to be bloody tough and unknown. 

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Denial

I refuse to accept the fact that I will forever have to pace myself and watch what I do. Keep stress to a minimum. Do exercises. No. I refuse. Why? I mean why do I have to work so bloody hard just to be about 70/80% battery life of what I was? It’s not fair! Nope. I refuse to believe it and this will go away. 

Acceptance

Part of me has accepted what’s happened however there will always be a part of me that will refuse to accept that I’m now disabled at 34 and every day life is a struggle for me. I refuse to accept help because I am so young. A few years ago I was helping others. It’s hard to accept that some days I have to ask my husband to help me dress myself, feed myself and help me walk to the bathroom.

Anger

I am so bloody angry this happened to me. It’s robbed me of so much. I’m so god damn angry. Why? Why me. 

I try not to get as angry these days but it’s so frustrating. I just want to be able to do everything I know I should be able to do at 34.

Frustration

I honestly can’t tell you how frustrating it is to look at your feet and think just walk! Or see your hands and think why can’t I lift that cup. Or lie on the couch unable to move speak or eat and think why the hell cant I just get up. It’s highly frustrating. One moment you can do it and the next you can’t. 

Sadness 

With a chronic illness comes great sadness. To be physically so dibilitating on pretty much an every day basis is beyond sad. It’s not something I asked for. I didn’t want to be like this. So much has been taken for me because of this illness. It’s not just sad for me though, it’s sad for my family too. 

Loss 

This is a big one. I have lost so so much.  I have lost my career. Everything I’ve worked for had gone. I’ve lost friends, companions, colleagues. I’ve lost part of my independence. 

I’m certain there are lots more stages of emotion to having a chronic illness. 

Before I sign off I do have one positive stage. 

Beauty

I see beauty in the small things in life. I find peace and beauty in things that would have passed me by before. I also have some concrete friends now that have stuck by me that I know will be here for the long haul and for that I am beyond grateful.

Much love

Emma

Special assistance when travelling by aeroplane

So we recently went away to Turkey. It was our first time away since being diagnosed with FND.
After we booked the holiday we booked special assistance. This basically meant we got a wheelchair for the airport and help through certain parts at the airport. So I figured I would let you know how we got on and how useful it was.
Upon arrival we went to the assistance desk, however it transpired that we had to check in first. Now I can’t stand for long at all so when we saw the que I looked at Ste and said no way can I stand in that.
A lady who worked at the airport over heard us and said we could go down the premier check in aisle. So off we went. Straight down and checked in. Very quick and efficient.
Once this was done off we went back to the special assistance desk for the now much needed wheelchair.
So far Ste and I were a little bit erm ‘concerned’ with that fact that I had to walk a reasonable distance by this point but couldn’t get a chair until we had checked in. However I guess rules are rules and they are there for a reason. They did say we could wait for someone to help us and push me but to be honest we just wanted to get through security etc so we could go for some food.
So let’s fast forward to security. This wasn’t too bad. The staff where great and efficient. It wasn’t quick but that’s fine it is what it is.
For me I stayed in the chair and got searched while I was sat down. The bags got checked as usual as did my crutches.
Now that was done off we went for breakfast and a very large coffee.
Our next obstacle was negotiating through the shops and crowds of people, usually would have been fine however with bags and a wriggly toddler on your knee I can safely say I found it hard work. I’m sure Ste did too. He had my crutches on the back of the chair which meant avoid smacking people with them!!!!
Anyway……
The toilets etc was all fine. The hardest part as I said was having a restless and wriggly toddler on my knee with bags surrounding us.
When we had to go to the gate, that was when I started wishing we had got one of the airport staff to help us. We had to walk miles to the gate and it wasn’t easy. I think Ste was fed up by this point to be honest. Some of the walk way points where slightly up hill. Which I can’t imagine was easy for him.
Once we got to the gate, some of the staff helped us which meant Ste could watch Alfie whilst they pushed me.
We took the chair right up to the door of the plane and from there it was a short walk to my seat.
We where seated in row 11 which was very close to the toilet. Which is handy when you can’t walk far!
All in all the staff where great, the crowds and our wonderful restless toddler was hard to negotiate. That being said without the use of the chair we would have really struggled. In fact sod struggled I wouldn’t have made it through the airport.
When we arrived at Turkey, we had to wait for everyone else to leave the plane first. The staff where ready and waiting with wheelchairs at the door of the plane. I was popped in a chair and off I went! There was no messing around ha ha! Quick as a flash I was through the airport, through passport control. Ste had Alfie in tow with their hand luggage.
I was parked up at the baggage claim and sat in a chair and that was that ha ha!
From their I had a short (ish) walk to the private taxi transfer. This was such a blessing, it saved me so much struggle of sitting on a coach for hours on end and also the steps on the huge coach!
The staff at the hotel couldn’t do enough for us. They helped wherever possible from carrying my plate in the restaurant to calling the lift and offering the hotel’s wheelchair if I needed it.
On top of this. They also had a section on the beach which was disabled access. This meant you could use your wheelchair or in my case my walk aids all the way down to the front of the beach via the walkway. If you have never tried it trust me when I say that walking in sand with walking aids is bloody hard lol! So this was a blessing as it meant I had support for much longer.

Travelling Home


So let’s talk about the special assistance going home……..
We where collected by a taxi from the hotel and taken to the airport. This was fantastic and do much easier than having to get on a coach and sit there for hours, plus the lack of leg room and huge steps. It was all arranged when we booked the holiday at no extra cost.
Antalya airport….
Due to circumstances beyond the staffs control. It all felt rather let’s say disjointed at Antalya Airport. I mean the staff where great.
However getting the chair was hard work. We found a small sign you will know the one – the international disabled sign – at an Emory desk (so no member of staff at the desk). Someone else who was on our flight was on the phone that was their for customers and had been waiting 20 minutes for a wheelchair. This was before check in had even been done!
We went through the first security section which was before check in. Then spotted the man in charge of us lot needing wheelchair assistance!!!! He told us to check in and that we didn’t have to wait long.
Off we went. However where to go exactly wasn’t clear and we waited in the regular que until we saw him again as he was bringing the other family.
Anyway when he saw us he ushered us to the correct place and we soon got checked in and I got my wheelchair. That was it then. Off we went!
Through passport control, another security desk everything. He was brilliant, friendly, and was working very hard. He explained that there was only him doing the job and he was sorry. I must admit I did feel bad for him.
As for getting through security, unlike Manchester Airport I did have to get out of the chair to walk through the walk way where they see if you have anything dodgy on you lol. However the staff where very good and held their arms out for me to hold on to at both sides.
Anyway once we had got through everything we asked him to leave us at the shops rather than take us to the gate. We managed ourselves from there as it was only a case of getting to the gate. Once at the gate the staff there would help us on to the plane.
Now let’s talk about when we arrived at Manchester Airport……..
Well. As mentioned earlier, when you land you have to wait for everyone to get off before you can leave. By which ooh t the staff should have arrived with chairs to help you down to baggage claim.
Firstly we had to wait a good 20 minutes, the crew where waiting to leave and the new crew waiting to board.
Then when help arrived, there weren’t enough chairs, or staff for us all. Then one guy ended up pushing us on a random wheelchair thing. Basically a line of chairs, however he made it very clear he wasn’t happy which I’m guessing was because of the lack of staff helping.
He was making rather stern comments about where the able bodied members of each of our families was meant to be. I asked Ste to wait with me.
By the time we got to baggage claim we had landed an hour ago. We where the only ones with bags left to claim and our taxi driver had rung 3 times to see where we were!
Although the wheelchair assistance on the way back was very useful. I have to say that the staff where under so much pressure and short staffed it unfortunately let the side down and it wasn’t as much as a pleasant experience ad on the way their.
I really hoped this helped for anyone else travelling with a disability.
If you don’t have a disability then I hope you found this a good insight into travelling by aeroplane with a disability.
Much love
Emma xx

3 Places to Visit in North Wales (with an Mobility Scooter)

Hey there, so whilst I’m having a little time off I still wanted to give you lovely lot some blog posts to read. So when the lovely Rebecca at Becsterdotcom said she would write a guest post for me I was thrilled!

She’s become a lovely friend and understands my mission to find accessible places to go for me with my family whilst I use my wheelchair.
Thank you again Bec for being a guest on blog.
Much love
Emma x

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North Wales is known for it’s mountains, lakes and castles… the land of legends so to speak. So I’ve been thinking, where would I recommend people to visit if they have a mobility scooter? Here’s my top 3.
Llandudno
The largest of the seaside resorts, Llandudno was a popular spot for Victorian tourists. To this day it remains a popular destination for a day out. I find it to be a great place and with it’s large North Shore promenade it’s a great place if you have a mobility scooter. The pier is a great place to visit with children with the amusements and play area. From there you can head on up to Happy Valley to have a picnic. If you park your car up at the top of the hill you can also go taboganning! 

Caernarfon
Another seaside resort a bit further down the coast is the historic town of Caernarfon – home to Edward I’s grandest castle. The town is very accessible as is the castle itself. There’s a ramp to get in and the grounds have decent paths to travel along. There’s also a lift to get you up to the Queen’s balcony level where you can look out over Caernarfon square. The only downside is that of course, you can’t use your mobility scooter to get up the castle walls (I also wouldn’t recommend walking them as they’re very steep and narrow).
In addition to the castle, you can take a wander around the promenade and have a nice ice cream at Palas Cafe or Scoops on Palace Street. Alternatively you could cross the Aber Bridge to the great play park for kids.
Llanberis
Llanberis is a lovely village about 15mins from Caernarfon. There’s lots of things to do in the village including a lovely lakeside park for kids. The path around to the lake is crushed stone so I think it’s mostly accessible for mobility scooters albeit a little bumpy. At the lakeside you can feed the ducks (or swans if they’re around) and take a look at the sword in the stone. 
The National Slate Museum is a good visit where you can learn about the history of Welsh slate. There’s a nice cafe and a children’s play area there. Similar to the lakeside paths, the ground is crushed slate – accessible but bumpy.


Thank you so much for these great suggestions Rebecca! Can’t wait to try them out when we next visit my in-laws in North Wales.
Don’t forget to head over to Rebecca’s blog page for more wonderful places to visit in Wales and her instagram page too. You can catch her at;

Legoland Manchester- disabled access

So as you have probably gathered I’ve been trying hard to get out a lot more at the moment.
We recently went to Legoland in Manchester.
We have been many times before but not for a while and Alfie has been asking so as it was a wet day, off we went!
Armed with my scooter and our passes, we figured we had cracked it.
Now, we love it there and the staff are great. However our recent trip wasn’t as successful but that was not the staff’s fault at all.
So disability access, they have a lift to get upstairs where the whole thing is based, downstairs is just the entrance and shop.
At the first ride we went on just as you go in, I was given a green lanyard to wear so I stand out to staff and also you get a card which let’s the staff write on how long you’ve had to wait for the ride etc.

Before I carry on I will say that they currently have a magical theme going on. So there’s Lego statues of wizards everywhere. There’s a magical carriage which you can get a photo in. There’s also a game to play where you have to find all the magical words in Legoland, at the end you can hand your results in to enter a competition to win the Harry Potter castle.

They have on display places from around the U.K such as London, Alton Towers and Blackpool, with moving parts. There’s even a football pitch! It’s incredible that some had built these.
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Moving along they have a virtual reality section.

You can build your own car of sorts and race it along the tracks they have then pose for 1st, 2nd or 3rd place.

They have a ninja’s soft play area, a cafe, go car area and a climbing wall!

During the magical theme event they have they have a magician on as well.

They have a duplo area for younger children and a craft room as well with set times of activities.
The 4D theatre is great as well! They’ve just changed the move so we where thrilled to see a different mini movie when we went.

I do believe you can have parties there as well.
Ok so, whet was it a bad visit I hear you?! Well apart from the fact that it was so incredibly busy, to the point where I couldn’t drive my scooter because of all the Lego on the floor………(doesn’t look much in the photos but trust me it was everywhere and I kept getting stuck!).
The air con had also broken! Not fun! I have to say though that the staff where excellent and still as helpful as ever. They gave out free slushies as the machine wasn’t working properly and also gave out play dough to all the children when they left. I have to say that they really worked hard to ensure that everyone still had a great day.

We unfortunately cut our visit short due to the heat and me not being able to drive around properly because of all the Lego on the floor. However we weren’t disappointed, Alfie still had fun which was the main thing. We did miss a lot of things I would have like to do with him however it couldn’t be helped.
We will definitely be going back as we love it, the staff are friendly and helpful and apart from Lego on the floor it’s really accessible for me. I can get on the rides, they have passed for disabled guests as well and accessible toilets.
They also have wristbands for all guests with a time limit, this is during their busy period so that there isn’t too many people at any one time and it keeps a constant flow of guests.
All in all, definitely worth a visit just be careful with the Lego on the floor!!!
Much love
Emma x

Alton Towers – Disabled Access

So we had a recent trip to Alton Towers. Another episode of days out with a disability.
Starting with prices we have a merlin pass so we can go any time we want. I imagine prices vary depending on the time of year, however we decided that we would save money and get a pass each year. This way it enables us to go to places like Alton Towers and Sea Life Centre often with the boys and despite their age gap between the boys we all enjoy going to these places.
As for parking, parking is brilliant, they have a huge car parking availability and it’s all labelled so you can find your car at the end of the day. They also have a monorail that you can jump on to avoid or much walking through the car parks.
If like me you have a disabled badge, there is parking right at the front of Alton Towers. Which is great because my battery on my scooter only lasts for a certain length of time! It also provides a lot more space for me and my scooter to be able to get in and out of the car.
Getting through the gates is very good. It was easy for my scooter to get through, they have security as well so everyone had their bag searched upon arrival. Which I think is a bloody brilliant safety feature to be honest! They have lots of lockers at the front, we have never used them as we have always had my scooter or a pram with us. However I do think this is a great idea, especially if you are taking your lunch with you and snacks, you can easily pop it on their and come back for it later. Or you could leave spare clothes in there and collect later. It’s a great idea, just be aware you will have a long way to walk for your stuff if you are on the other side of the park!

Now something else I want to mention, if you have a disabled badge, go to the information centre on the right hand side. In here you can get a wrist band which enables you to get on the rides via disabled access path. You can’t get a scooter or wheelchair down many of the regular paths and if your able to walk you may not be able to stand for long – like myself. So this band is a must. It also enables three other people in your party to come with you but you must sit with someone who is 14 and over in case you need help off the ride, this meant I sat with William and Ste had to sit with Alfie. You also can’t go on a ride alone, this is just for safety reasons.


If you don’t have your own set of wheels to get around you can hire one from the park but I do believe it’s first come first serve.
The only complaint I have is the shop to the left. Now I went in with Ste and Alfie whilst William went somewhere else for something. There are 3/4 stages to this shop, I could only access the top and the bottom part but I couldn’t get to the middle because of steps. The only way to the top section was to go back out of the shop and go up the street and back in again. I won’t lie of Ste wasn’t with my I would have left, for two reasons, I can’t exactly go out of the shop without paying to go back up the street to go to the tip section to pay. This is really really terrible if I am honest and put me off straight away. Also just the fact that they haven’t considered disabled guests makes me not want to shop there lol! Bad form Alton Towers.

Now before you arrive at Alton Towers, if you have a smart phone I really really recommend you downloading their app. Not only does it tell you where you are in relation to everywhere else, it helps you with directions to where you want to go, more importantly it tells you of any ride closures and waiting times which I think is just amazing! It meant we had a quick access to ride waiting times in such a huge park – amazing, it also means you can prioritise where you want to go next. You can also purchase tickets from the app, get directions to the resort and find out opening times.

Let’s talk about CBeebies land first. If you haven’t guessed by it’s name and didn’t already know, this is the place for young children. They have many rides for them from Peter Rabbit ride, tree top challenge, in the night garden to a merry go round type of ride for any age and size child. They also have places to go for children that isn’t a ride, such as Justin’s House (flying balls everywhere and yes it can hurt, approach with caution), Furchester Hotel ( this is a little show and me and Alfie loved it) and Charlie and Lola’s House (which Alfie really enjoyed, I think we went here about 3 times!)



Alfie’s favourites where, Charlie and Lola’s house, Peter Rabbit ride, octonaughts, tree top ride and go jetters. He absolutely loved them
Alfie and I stayed here on our own for a good hour whilst Ste and William went on a few big rides. I was nervous as I am not as able bodied as I used to be it makes me nervous having Alfie in a place like Alton Towers and me not being able to manage him well enough.
However the staff are incredible and helped me in and out of places and one lady even recognised us, I commented on how lovely this was and her reply was it’s my job to recognise children just in case they get lost or something. This made my day, that someone takes their time to make note of children and who they are with, ensuring the child’s safety.
The staff also helped Alfie to get on a few rides that I wasn’t able to help him on to. He was able to go on the ride on his own, however the Peter Rabbit ride for example, I could drive in to help him sit on the ride but he wasn’t tall enough to jump on. So they helped him up, it really made my life a lot easier.
They also have a play area which is great. I mean I know they children are having fun on rides etc but we all know those wold child toddlers of you have one need a good run around to let off more steam. So the park area was also a huge hit for us.

There are plenty of toilets through CBeebies and the whole park, including baby changing, adult changing facilities and disabled toilets. It was never an issue for me to find an accessible toilet. Bonus!
CBeebies land also has a tent area where they have shows on through the day at certain times which you can check at the entrance. There are more toilets and changing facilities, a huge area for children to run about then smaller tents around the outside which had things like bowling in and stacking bricks. Alfie loved it but my only concern was that I couldn’t always keep up with Alfie and with him still being young, I don’t feel able to leave him to wander off safely and come back to me. Call me over possessive or untrustworthy of my son but with my circumstances in my disability the fact is I have to be careful. I can’t run after him so I need to make sure he’s safe and I am able to follow him. So due to this I felt a little bit worried about being at the big top tent but Alfie loved it which is what matters most I guess.

Alfie was able to go on a few rides outside of CBeebies land which where the runway train – this was brilliant even though I was a little scared but as I said I am a wuss! We also took him on a pirate ship ride in the pirate section of the resort.
The actual ground of the resort park, really are beautiful. They have some stunning views and the castle is so pretty.

They actually have the fireworks at the castle over the lake on bonfire night which if you get the opportunity to go is incredible. The display they put on is phenomenal and they even open some rides up again after the show which means you can go on some rides in complete darkness. Not for me but Ste and William enjoy it.
Eating. Now we always take some lunch with us but if you want to eat there there is absolutely loads of places to choose from be it sit in or to take away, there’s also many places you can sit and eat.
You can buy drinks to in many varieties, slushes, juice or a brew, You can buy a brew in a travel mug and get refills through the day for just £1.
We have never eaten at the resort but the food always smells amazing, the only thing I do recommenced that we have had is the hot donuts they sell! They are bloody gorgeous and you really need to try them!
Now the other thing I will say is that you can stay at over at Alton Towers but it does come at a price. We haven’t stayed over before but it isn’t that far for us to go so we have no need to. They also have a swimming section to the resort which is a separate entry fee. We went before my disability really kicked in, it was fabulous though with loads of slides etc, fun for all the family and a few where all of you can go on and enjoy it. I can’t swim at the moment due to my FND but I’m hoping we can go back one day where I am better.
Now finally lets chat about the big rides, I am personally not a fan. I’ve done some of them once but it isn’t my thing and I am a complete wuss so I asked Ste about them and his response is to do them all and get to the popular ones first. So the popular ones are Wickerman, Smiler, Nemesis, Galactica, Oblivion, Rita and Thirteen.
All really good but they do have long waiting times so pick which one you want to try first and go and soon ad the park opens. That’s our advise. Plan your trip before you go and have an idea what you want to do when. We decided on but rides first and CBeebies later. Then Ste and William revisited some later whilst Alfie and I did some shows.


Have you ever been to Alton Towers? If so what’s your favourite ride?
One last bit of advise. Take spare clothes for all of you. You never know! We have been caught before being soaked through!!
Much love
Emma
x

Chester Zoo – disabled access

Hey everyone. Welcome back to my blog.
So if you follow me on Instagram you will know that I’ve been having some treatment of sorts recently for my FND. I’m managing to go out a little bit more now. Especially with my scooter!
So I figured I would let you know about the places I visit and how I get on.
So I recently visited Chester Zoo with my parents, Ste and Alfie. They often have some sort of event on and at the time of writing this they have a dinosaur 🦖🦕 event on.
So we headed off just before the summer holidays started on a Tuesday.
Prices

Adults – this can vary depending on when you go. For instance peak times it will be more expensive. So it can range from £20 – £25:45.
Children – again this can vary depending on when you go. However it ranges from £15:45 – £20:90. Aged two years and under are free. Paying child from 3 – 17.
Students and senior prices are £4 cheaper.
Now if there are two of you going, and one is disabled. The disabled guest had to pay but the other adult i.e the carer goes free. You may need to provide evidence. For instance, a photo of your disability badge or your PIP payment.
They don’t ask questions. They are very friendly and just accept it.
Accessibility.
Now I took my own scooter, however you can hire one if you need to when you are there. It’s £25 refundable deposit and booking is essential. There is disabled Parking right at the front.
If your not disabled I do believe there is a very big car park so it shouldn’t be an issue to find a parking space.
There are toilets everywhere in the park and just as many disabled toilets as there are regular toilets. This is great as sometimes there aren’t many and find you have to go further for one sometimes. However we went for a drink at a place called June’s Food Court. They have a huge playground outside which is amazing. However I can’t say I was impressed about the toilet facility for disabled guests. There’s an almost regular sized door to get to all toilets which makes it hard to get through, and where the disabled toilet is, I couldn’t logistically drive in, open the door and get in to the disabled loo. Thankfully I just about managed to walk in (with difficultly I might add). However I couldn’t walk at all I would let have been able to use the toilet. Not good.
It opens at 10am and when they scan your ticket there is a gate for you to go through. So every barrier is a gate which is great, you can just go to any que.

I do believe from looking online there is a day where they are turning off the sound effect. This is on Sunday 28th July from 10am – 12pm. This is amazing as with many conditions noise can be a problem.
Everywhere is wheelchair accessible, however electric scooters are not allowed on the monorail or the Lazy River boat trip. My only complaint is the flipping wood bridge they have to get from the Lions to the Bats I think it is. My chest was killing me after that extremely bump ride! They wood panels go side ways so it’s really hard to ride a scooter or wheelchair on this. However I am sure there is a good reason.

Even if you don’t have a disability, the zoo is huge. So it’s great that they have a monorail! For the tired weary legs or your toddler, it’s brill to have a ride around and look out at the animals.
Generally you can manage to get through most doors however there are a lot of doors that don’t have an open door button so if your in a chair you will have to ask someone to open the door for you. Again, I am sure there is a good reason for this.

Food and drinks.
There are many many places to eat if you want to buy lunch while your there. If your taking some lunch there’s also plenty of places to sit outside to eat. If it’s on the grass or a picnic bench.

They have places for snacks, coffees, ice cream and even dole whips now!
They even have a fancy place to eat if you want to be a bit posh for a bit!

What to see

Ok, if you get chance to stop and look at the Oriental gardens. It really is beautiful. It’s at the back of the posh pub pictured above. They also have a few other bits of gardens in the same area.

The elephants 🐘 are available to see as soon as you walk in.


You can get an up close view of the giraffes 🦒 In their ‘house’, or view them from different points from the outside of their enclosure. We didn’t do this this time around though and just saw them from the back of their enclosure.

The penguins 🐧 are just amazing! I love them. You can view them on one side where you can see under the water and see them wizz past. Or you can watch them over the other side from above.

If you come across the butterfly 🦋 house do go in, it is beautiful.

The bat 🦇 house is bloody scary. You can barely see and have bats flying about freely as tog walk through. Enter at your own risk ha ha!

The smaller animals are just as beautiful as the big. From the birds and frogs to the lions and panthers. They are all beautiful. They even have fish.
The zoo is huge and it is rather difficult to get through every animal in one day. So pick your favourites when you get there, you will be given a map as you enter so keep hold of this.
One area of the zoo is still under construction at the moment from the fire they had. Some animals where lost and they are having to re build this area. So you may not see some of your favourite animals whilst your there.
Dinosaurs- The Event

This was amazing, the detail in the dinosaurs are incredible. They are animatronic with sound efforts so small children could find it scary.
However it’s so wonderful to see and walk through.
Chester Zoo really do know how to do events.
Alfie has a great time and his favourite was the T-Rex and the giant snake at the end lol!

Other stuff you should know
Whilst we didn’t stop to do these I did take a moment to notice you can do crafts with some staff. Such as make animals with your handprints, you can also get your face painted.
The shop they have at the front is huge. There’s all sorts in there and it’s so big, there is all sorts to choose from and it can actually be over whelming for little ones. We took Alfie in and Mum said he could have something. However there is that much there that he got a bit overwhelmed with everything.

All in all I have to say despite the two minor problems I faced, it really is a great day out. With deals and wheelchair accessibility it’s a win win situation and a great day out for us where I can function physically in my chair and adults and children alike all enjoy this day out. I also feel like I am winning at Mim life bringing Alfie here. I struggle with some places to take Alfie so this is great as I can use my scooter everywhere and Alfie has a great time and we can ride him out lol!
Hope you enjoyed this new section of my blog. Days out with a disability. (Need something more catchy I think lol)
Much love
Emma
Here are some more of my favourite photos I took.

Parenting with FND

One of the many things I get asked about with having FND is how I manage with having a toddler (a wild child toddler at that!).
Now I won’t lie it’s not without great difficulty. The first thing you have to try and wrap your head around is do not feel guilty. This is something I am getting better at but I do still have days where if I don’t do much with him then I feel really guilty.
Something as parents, actually scrap that, as human beings we are very guilty of comparing ourselves to others and how we should be doing things. We really shouldn’t do this, it’s not good mentally. On my days with Alfie if all I can manage is to help him get dressed, feed us, stick the t.v. on and may be help him with a jigsaw or something then I should be proud of what I have achieved as quite frankly in those days you can guarantee I probably feel like going back to bed and staying in my pjs. As a parent though I can’t do that!
So anyway. Let’s chat about staying in with a toddler and how to manage if your like me and have a chronic illness or may be your just not well and need tips on how to get through.
T.v. Majority of us have one, it’s not a terrible thing, it can be educational, fun, it keeps them quiet. It really isn’t the end of the world if you just let them watch t.v that day.
If people want to judge you then remember this 1) they are probably lying if they have never used the t.v for the day with their child and 2) they probably haven’t been in your shoes where you can’t physically move off the couch. Good for them but they aren’t you so stuff them lol.
Books! Interactive books especially. So many things to educate them, touch, sounds and visual too. Books are fantastic and we have so many for Alfie already and he loves reading anyway so winner!


Colouring is also a good one and requires minimal input from you, however you could end unfortunate like me and have a child that doesn’t like colouring! He will do some colouring but not much.
I recently got a bag of items that I had collected from eBay and Amazon that represent various nursery songs we can sing. I didn’t pay much for each one, but I tell you what we have so much fun with it and Alfie acts out some of the songs with the item he pulled out. See picture below for inspiration on the items for the song.

Alfie has a box of wooden train track and another box of toot toot car track. This is brilliant he loves playing with this and all I have to do is get the box down!


We also love doing jigsaws and playing some games particularly from Orchard as they are perfect for his age group at the moment.

The other thing we love to do is bake! We have been exploring a lot of Betty Crocker cake mixes. They make such gorgeous homemade mixes and they don’t take long to do which is perfect when your baking with a toddler!!!

The other thing I do is lead by Alfie. Let him decide what to play with. Whilst it’s good to guide children and give them encouragement on things to play with. It’s also great to let them free play and entertain themselves.
I would love to know how you entertain your children if your not well or you have a chronic illness.
Much love
Emma

I miss you

I miss the person I used to be.
The one that could go out when she wanted, walk where she wanted. I miss the person that could be anyone and go anywhere.
Now I am restricted and I have to pace myself. I really hate that. Pacing myself. I’m 34 I don’t want to rest after taking a shower before I can get dressed.
I person I used to be.
The one that could clean the house in 2 hours and it be spotless. Now it takes me three bloody days.
I miss the person that could go anyway, drive anywhere and do anything. Now I have to plan and rest before hand.
I’m miss the Mummy I used to be, the hands on, let’s go everywhere and do this Mummy. The Mummy who could always play and had energy.
I miss the wife I used to be, the one who wanted to keep the house clean and tidy, provide a good home and cook and bake wonderful meals.
I miss the person I used to be.
The one that could walk and walk and walk, talk all day, cook all day and clean all day.
I miss the old me. The one who had more friends and a better social life. I miss the old me, the one who didn’t have FND and had the career I worked for….

You can’t see me

You can’t see me
You can’t see me but I’m here, I’m thinking about where to go next what to attack next.
No one can see me
People look and try to see but they can’t
I’m hiding.
You can’t see me, but today…….you can’t feel your legs, body feels like it’s on fire in pain. Your body feels like it’s being crushed between some walls, eyes are sore and aching. Stomach is in knots and feels sick.
You might not see me but I’m there.
Just because you see a smile upon her face, it doesn’t mean I’m not there. The pain, the extreme fatigue, the swelling, the migraine, the loss of speech, the swelling, the bladder control, the dizziness, the brain fog. The battle to eat and drink. The internal and external twitching and spasms.
You can’t see me but I am there. The confusion, the fog, the focus, the concentration, the blurred vision, the struggling to breathe.
You can’t always see me but I am there.
You can’t see but she feels sad and lonely and isolated. A loss of one life while learning another. You can’t see but she is sad she can’t wash her hair today, sad of the life I have lost.
You can’t see me but I’m there, the choices people make for her rather than with her. The lack of knowledge and understanding and sympathy.
You can’t see but every day is a constant battle and learning how to manage. How to pace.
You can’t see me but I am FND.
I am me. I am not my FND

I cried.

I’ve sat and cried today. I’m not even completely sure why to be honest. I just feel so vulnerable today. I’ve got so many symptoms and I am scared of being alone today.
I’m scared of something happening whilst I am alone and I’m scared of going out and being near people who don’t understand. They don’t know why I walk with a crutch or that it’s more than just my legs that don’t work.
I’m scared of going out in case I sound stupid because I can’t speak properly, or if I drop everything because I can’t use my hands properly or if I take ages to pick something up because I can’t process what’s in front of me.
My husband has seen me at my worst and he gets it. He knows. He’s fed me, dressed me, washed me. He gets it.
I’m scared of what’s to come in my life and how much of me I can get back. I don’t know how things are going to pan out and what my average battery level might be. I’ve lost so much but hopefully I’ll gain much more.
I don’t want to be negative about it all. I’m really trying to get a hold of things. The more I understand my condition the better equipped I can be on how to deal with it.
I do have my better days, where I am more focused and I feel like I know how to manage it. How to control it if you like.
I just wish I could feel as strong as what people tell me I am. I’m dealing with it yes but am I strong? I’ve no idea.
All I know is I don’t have a choice really.
I just wish I could feel strong in facing people when I’m at my worst with my condition. I wish I could feel confident when going out. Confident in me, my condition and confidence in what or who I might face.
I don’t know what’s to come. However I do know this.
It’s ok to sit and cry, life with FND is not for the faint hearted that’s for sure, however I also know that the next day I will pick myself up and if all I can do that day is feed myself and entertain myself and my tiny human toddler that is Alfie then I will give myself a bloody good pat on the back for a job well done. xxx