Friday, 30 September 2016

Medication - Word of the Week


I'm in the situation at the moment where my medication is ruling my life.
I had a new medication prescribed by my neuro consultant a couple of weeks ago. As soon as I started taking a very low dose I felt ill. I was told to keep on a low dose for 14 days and then increase it a little. That time has come but I'm worried because this medication is taking over.

This week I've done not very much at all. I did take the kids to school on Tuesday because I had a meeting with Star's counsellor. I will also be taking them to school this morning as I am going to a coffee morning with the Senco at Star's school. On Monday I went shopping at the supermarket for the first time this year, which is huge really...but that's it. I've done very little else. Not only have I not been out much I've not done much in the house either. I've kept up with the washing and cooked meals with the help of Graham. I may have washed up once or twice.

I've just been so tired and in pain that I feel like I've stepped back to how I was 9 months ago and I'm not happy. I know it's down to the new medication.

These new pills are popular with those who have my condition, Transverse Myelitis. They help to release the tension in muscles, reduce spasticity and muscle spasms. If they work it will feel like a miracle. I have to keep taking them and hoping that the side effects stop. I have to keep hoping they will work and give me my miracle.

In the meantime my week and my life is dominated by the effects of medication.

The Reading Residence

Thursday, 29 September 2016

10 Steps to Giving Your Kids a Happy Childhood

3 happy kids, please pin this to pinterest


We went to speak to the school counsellor about Star and we were asked if she'd had any traumatic experiences...well, you know, just the usual, two lots of major surgery, constant pain, dislocations, broken neck, then there are the family problems including a mum that was paralysed in a day and is now mostly wheelchair bound. And her Grandad passed away suddenly at Christmas. I guess my child has had her fair share of traumatic experiences already.

Then we were asked, what are her happy times? 

Errrr, there has to be some? Pokemon, piped up Dad, she likes Pokemon. 
Holidays, I offered, we like to go on holiday and always have a fun time.

My 3 smiley happy kids on holiday

This made us think. Are our kids having a happy childhood? I know Star has had an usually traumatic time, and the other two have shared that too, but what about the happy times? Have there been enough, are we doing enough to give them a happy childhood, will they remember it being happy?

I've given it a lot of thought and come up with 10 ways you can make your kids have a happy childhood. 

  1. Love - has to be unconditional. It's important for a child to know that no matter what, you will always love them. They should not have their feelings belittled or their distress unheard. They will learn to love others. Love makes them value themselves and capable of valuing and loving others.
  2. Security - A child needs to feel secure to feel happy. They should always made to feel safe and protected at home.
  3. Play - It's not just about the latest toys and gadgets, it's about imaginative play and having fun with other children. Your child will benefit greatly if you play with them too.
  4. Boundaries - a child needs boundaries, you may think you are making them happy by letting them do whatever they want but they need to know that sometimes their parent has to get tough.
  5. Praise - gives them approval and lets them know that they are loved. It's always a joy to recieve praise from a parent. 
  6. Food and Exercise - a healthy child is a happy child that's simple.
  7. Wonder - A sense of adventure and wonderment triggers a lot of happiness. Learning new things can be fun, wanting to learn new things is even better. Fill your child with the love of learning and asking questions. 
  8. Practice Gratitude - Every day ask them what they have to be thankful for. Tell them what you are thankful for. Sometimes the good things pass you by, but not if you talk about them.
  9. Inclusion - Include them in your life, let them help you cook and do the housework. Let them see where you work. It's all one big adventure to them.
  10. Nurture Your Happiness - Be happy yourself and your child will pick it up. No-one can be happy all the time but letting your child seeing your happy side often will make them happy too.

A happy child doing something she loves, cooking at home with her sister
How much fun is cooking at home with your sister?

When I was a child I had some traumatic experiences too. My Dad passed away suddenly when I was young. My mum nearly died in childbirth with my younger brother. My younger brother nearly died. We had neighbours that blew their house up, literally, it was the biggest fire I've ever seen. I also had an operation and spent time in hospital. 

I survived all of this relatively unscathed. I look back at my childhood and I think of the fun and laughter that I had when my cousins came to visit, and that was often.I remember making mud pies in the garden and decorating them with worms. Although I was very young I still remember my Dad making up stories for me at bedtime and taking me to the Bluebell Woods at the weekend. I think of the fun holidays we had, mostly camping and with lots and lots of family coming along. I think of Christmas which was always full of fun, laughter and family. I think of running across fields with my cousins and walking all the way up to the Licky Hills to collect frog spawn for our pond. These are my happy things, these are the things I remember about my childhood.

happy kids playing in the back garden
Happy kids playing in the back garden


I hope that when my own children grow up they will remember their childhood as being happy. We don't have huge amounts of money, we don't go on exciting memorable holidays all around the world, we can't give them the amazing experiences that we think will make them happy. What we can give them is a rounded, happy upbringing full of love and laughter, wonderment and gratitude, boundaries, praise and security.

What do you think? Is there anything you would add to my list? Was your childhood happy, I'd love to hear your happy memories in the comments.

two happy children stroking guinea pigs
simple things like stroking a pet can make a child happy.

Tuesday, 27 September 2016

The Truth About Being In Hospital

At the start of this year, I was admitted to hospital as an emergency.
The only time I'd been in hospital for anything other than having babies was when I had a tonsillectomy at seven years old.
I was scared about what was happening to me and to be honest my fear overcome my worry about what was going to happen at home. This lasted a couple of days as I lay there barely able to move having test after test and hooked up to a drip for my drugs.

When I started to improve a little that's when I started worrying about home and missing everyone.

However, I was still really unwell and I decided that there was nothing I could do and they could cope on their own for a few days.

Those few days turned into weeks, but I was still unwell and they seemed to be coping well. I spent my time mostly in bed. They would get me out, shower me and make me sit in the chair next to my bed. After a couple of hours I would say I was hurting and ask to be put back into bed. There I would sleep, or read. Nothing more. I had blanked myself off from worrying about things I couldn't change and focused on feeling better.

Each day was the same routine, I had breakfast brought to me at the same time, I had my shower at the same time, I had lunch and dinner and in the evening a cup of Horlicks and a biscuit. I didn't have to move. No cooking, cleaning, bed making, washing up, laundry etc.etc. etc. Just me lying in bed, or sitting in my chair, reading whenever I felt like it.

In the evening more mobile patients would visit our ward and sit and chat. They may have been more mobile but their health was not so good. They had been through a lot and had a lot more to come. But still they visited and chatted and we laughed a lot too. I was lucky, I had hopes of getting better, I didn't have anything life threatening and I didn't need any operations. I was truly lucky and these amazing people showed me that.

Sometimes I'd have visitors come to chat which was nice. I'd say it broke the boredom but if I'm honest I didn't really get bored. I don't know if it was because I was so unwell but the rest and doing nothing was actually agreeable, not boring. I missed my kids but they didn't seem to be missing me much. They had everything they needed.

When I was able to I googled my condition and tried to figure out how long it would take to recover. My consultant was saying I would get better and Google confirmed 2-8 weeks. It looked pretty good, I would be back to myself in a couple of weeks....but I wasn't. Eight weeks seemed a long time to wait for recovery.

Then after two weeks my consultant decided I could go home. My feelings were so mixed up. I wasn't mobile and I knew I wasn't going to be able to do anything when I got home. I knew that things would have got bad in my absence, would the toilets have been cleaned, would the laundry be done, would the bedrooms be tidy. My other half is really good with looking after the kids and cooking, but his idea of housework is running the vacuum around the living room carpet and that's it.
Even more worrying was...had the Christmas tree been taken down, it was mid January now!

My other feelings were excitement of being around my family again, being in my own home and my own bed. It had taken me a while to get used to the hospital bed but fiddling about with the controls I'd managed to stop slipping off the end.

My house was adapted for me before I got home, I had aids in the bathroom, around the toilet, in the bedroom, in the kitchen, a new banister on the stairs so we had one on each side and, of course, my walking aids. Apparently my condition did not warrent the hire of a hospital wheelchair despite my not being able to walk very far.

By the time I had to go home again I was feeling very mixed up. My family were coming to pick me up but I was sat there in my pyjamas, unable to reach my clothes or get dressed, unable to pack up my things, unable to walk basically. It drove me mad. I like to be in control. The tea trolly came around while I was waiting and I suddenly felt so sad, I wanted to stay in the hospital where I had no worries and everything was done for me. I couldn't go home, I couldn't do anything for myself.

I was also feeling really excited at seeing my family and going home.

I was also going to miss the friends I'd made on the ward.

I was also going to miss the lovely nurses.

I went home, it was painful. Painful in the chair to the car, painful in the car, really painful getting into the house without a wheelchair. I tried to keep smiling, I was going home, back to my family.

When I got home and sat down I cried. I couldn't help it. I cried for lots of mixed up reasons.
I cried with relief at being home.
I cried because I'd missed my kids.
I cried because I was in so much pain.
I cried because it was obvious that the Christmas tree had been taken down in a hurry because I was coming home and that there were the kids Christmas presents all over the floor. Christmas had only just ended at home, despite everyone ending it nearly two weeks ago.

It was so hard being at home in the early days. I couldn't do anything and had gone from the one who did everything for everyone to being the one that had to ask everyone else to do everything. I couldn't wait to get better in eight weeks...well there was only six to go.

Then I started talking to other suffers and the truth dawned.
It seems that only a third of people with my condition, Transverse Myelitis, get better in eight weeks. Just one third. I was not one of them.

It's now eight months later (nearly nine) and I'm a lot better but I've still not recovered. In fact I think at least fifty percent of my recovery is just me getting used to my body being so useless and getting on with it. The pain, I believe, hasn't changed much at all, but I've gotten used to it so it doesn't bother me so much.

I still miss being in hospital. Life is so hard, everything is so hard, even the simple things. I'd love to go back to just lying there and not worrying about anything. Is that bad? I don't know why people hate hospitals so much, the truth is I quite like it.





And then the fun began...


<

Monday, 26 September 2016

Pastry Week - No Soggy Bottom just Pleased Mouths

I didn't make a post about last weeks Great British Bake Off, I had been ill most of the week which I believed was caused by my new medication. Then I was off to London the weekend which took a bit of recovery afterwards. Also, it was batter week and I'm making pancakes and yorkshire puddings all the time. I did promise Boo that we would make some artistic pancakes, but we haven't got around to it just yet.

This week was pastry week, one of my favourites as I love pastry.

The Signature Bake was to bake Danish Pastries. I love making these although I do cheat a little and use ready made puff pastry..aint nobody got time for that!

The contestants in the tent did well, in particular Jane and Candice. Doing not so well was Benjamina and Tom.

Next up the technical challenge was a bakewell tart. I love Bakewell tart but I've never made one. I'm pretty good at shortcrust and I like frangipan, the problem is hardly anyone in my family actually likes jam! I do, but then I like most things.

Rav came last on the technical challenge with Val doing really poorly too, Jane got first place with Candice coming in second. It looks like it's a good week for Candice.

The showstopper was filo Amuse Bouche, or aperitifs. The contestants had to make 12 savoury and 12 sweet. Here Rav and Benjamina redeemed themselves a fair bit but it was Candice who shone and won Star Baker. It was Val who was sent home this week as the one with the soggy bottom.

Now the focus is on what's going to happen to the Great British Bake Off next year when it moves from the BBC without Mel and Sue and Mary Berry!

Back to baking though, this week I decided to have a go at making my own filo pastry.
It wasn't as hard as I thought it would be. Here are my Rhubarb and Custard Amuse Bouches.

a photo of rhubarb and custard filo tarts
Pin For Later :)


Filo Pastry

This recipe is for a small amount of pastry as Amuse Bouches are tiny mouthfuls and I didn't really need much to make them. 

Ingredients:

200g plain flour
1/2 tsp salt
15ml olive oil
About 160 ml of water
cornflour to dust 

Method:

  • mix the flour and salt in a bowl
  • add the olive oil and mix
  • add the water a little at a time while mixing
  • stop adding water when dough has formed a slightly sticky ball
  • knead together for a little while, the dough should be soft and pliable and not stick to your hands
  • separate dough into three small balls and put on a cornflour dusted tray
  • cover with cling film and leave for at least 2 hours before using
  • go watch a movie or something
  • roll out the dough on a cornflour dusted surface until it is so thin you can see through it.
  • cut into equal size squares
  • butter a cupcake tin
  • place one sheet of filo into each space and spread with melted butter
  • place another sheet on top at a slight angle and spread this sheet with melted butter
  • continue until you have at least four sheets of pasty in each space and each is spread with butter
  • bake in a pre-heated oven at 170C/ gas mark 5 for about 15 minutes, until crispy and slightly brown.


a collage of photos showing how to make filo pastry

Rhubarb and Custard Filling

As these where delicate pastries I used a pastry custard called Creme Patissiere.
The rhubarb I admit was from a tin. Again, this recipe is for a small amount.

Ingredients:

  • 125ml milk
  • 1/2 tsp vanilla extract
  • 2 egg yolks
  • 5g plain flour
  • 5g cornflour
  • tin rhubarb

Method:

Place milk and vanilla in a saucepan and bring to the boil and take off the heat
Put the flour and eggs in a bowl and mix well into a smooth paste
Add about 1/3rd of the hot the milk to the paste and mix well until smooth with no lumps
Add the paste to the saucepan and bring back to the boil whisking constantly
Take off heat.

photo of a pan of creme patissiere


To Make Amuse Bouche

Put a little piece of rhubarb into each filo pasty case
Put the cooled creme patissiere into a piping back and pipe on top of the rhubarb.




a photo of finished amuse bouche.





Mummy Mishaps


Sunday, 25 September 2016

My Sunday Photo 25th September 2016


I took this photo on Friday while having a coffee outside the hospital. It's such an huge hospital, and pretty new as it was first opened in 2010. The old hospital is still used and you can get to it from the corridor leading out of this part of the building, the white corridor on pillars to the right of the photo. It's much nicer to just walk over the ground though. 

This is just off the main entrance, the A&E entrance is around the other side of the building. The whole hospital is based on a round theme and had three huge circles as you can see by this pic. which is not one of mine.


It's so large you can see it for miles. In fact you could see it from our back garden before we moved house. Behind this building is the Maternity hospital which is the only place I ever spent any time before this year. In fact the last time I stayed at the Maternity hospital was just two months after this hospital opened.

This week I've been here three times. The first with my eldest daughter after her sewing machine accident. Then on Friday for my physio therapy session. Finally yesterday morning to pick my eldest up after she had a check up to see how her recovery from surgery last month was going. 

In January I was confined in the first round building. They are called doughnuts because this is only half of the circle and there is a big gap in the middle. I didn't get one of the better views that I know must be on offer. In fact all I could see from my window was more hospital. Lucky me! 





OneDad3Girls

Sunday Snap

Friday, 23 September 2016

Drama - Word of the Week






This week has been quite eventful.
After a lazy weekend recovering from the Mad Blog Awards on Friday evening (the journey to which was quite a drama in itself) we got back to school rather sluggish on Monday. In fact Star was a whole two minutes late and ended up with a 30 minute detention. I do understand that punctuality is important but I was a little annoyed. I said to her, 'ok, we'll take you in 30 minutes late every day and you can stay behind 30 minutes,' She wasn't impressed and sulked while replying 'don't you love me mummy?'

Then on Tuesday I went to pick the children up and there was a strong smell of gas in the playground. We noticed the building work going on behind the school and I said that it smelled like they had hit a gas pipe. The Little Man came out saying that they had been standing in the playground because of a gas leak. So was the gas coming from the school then? When we picked up Boo she said they had been evacuated because of gas. If that was the case why had they been allowed back into the school when the gas was still so strong? All was revealed with a message from the school saying that there had been some confusion at first but the gas leak was from the building site. Because the smell was so bad they decided to keep the kids away from school for the next day.

On Tuesday evening I was reading a book and contemplating starting dinner when my eldest daughter walked in the room looking like she was holding something in her hands. She looked pretty distressed, as did I when she showed me a needle sticking through her finger and a load of blood! Her sewing machine needle had broken and gone straight through her finger which was now turning blue. This is when I began to feel useless, I'm not good with blood. I knew she had to get to A&E and I could drive, but I couldn't get out of the car when we got there. I had to leave the littlies with their big brother and go and pick up Graham who had gone out to meet a friend. We made it to the hospital and an x-ray revealed that the needle was incredibly close to her bone but it was safe to remove. Then we had the issue that runs in the family with local anaesthetic. Two of my girls and myself are totally immune to it, it just doesn't work. Yes, visits to the dentist are fun!

x-ray of needle through finger


Eventually they managed to remove the needle and give her another x-ray and we were on our way home. Too late to cook we popped into the drive thru KFC for dinner. That was fun! I'm pretty good with my driving, but not so good at breaking when going slow. If I'm approaching a car park space or similar then I generally get there by jerk stopping every few centimetres. This is a little embarrassing if you are trying to stop the car at a service window. The lad was laughing at me, pah, he should try driving with his hands.

I think I've had enough drama for this week but today I've got my first physio since taking my new medication. That should be fun considering my balance is completely off and I can barely walk at all now. I'm hoping things will improve once I get used to the meds, but today's physio is going to be interesting.

Here's to a drama free week next week.


The Reading Residence

Thursday, 22 September 2016

Trust or Trustworthiness?

Who do you trust?
If you were asked to take part in an opinion poll what do you think your answers would be..
Do you trust politicians?
Do you trust journalists?
Do you trust tv presenters?
Do you trust Doctors?
Do you trust nurses?
Do you trust policemen?


It seem that some people are instantly trusted or mistrusted because of their profession don't you think?

What about your family members, do you trust them?
Do you trust your next door neighbour?
Would you trust a guy in suit in a cafe who came up and asked to borrow £5 with a promise of paying it back?
Would you trust a young lad in a hoodie in a cafe who came up and asked to borrow £5 with a promise of paying it back?

It seems that we trust people because of how well we know them and what they look like.

Maybe we should stop thinking in the way of trust and think more about trustworthiness.
Is a person competent, reliable, honest? Trustworthiness is what we have to judge.

Also, making yourself vulnerable makes you more trustworthy.
If a shop offers a replacement or money back on any item that you buy, no questions asked, they are making themselves vulnerable to you and you feel as though they have earned your trust.

Any person who is competent, reliable, honest and is willing to make themselves vulnerable to you is probably the person you will consider to be trustworthy.

I've experienced a lot of broken trust in my life, some really serious. These people were ones that I felt were trustworthy and I allowed them my complete trust. However, they did not prove themselves to be competent, reliable or honest and once that trust is broken it is very difficult to rebuild.

Some people believe that once trust is over then the relationship is bound to fail. This is generally the case, the person who trusted feels betrayed and hurt and the person they trusted is now untrustworthy.

It's so difficult to rebuild trust because we think of it the wrong way. You can build trust in someone that had let you down unless they can prove that they are trustworthy again.

I do believe that the untrustworthy can prove themselves again, but it takes time and commitment. If they can do this then another may be able to rebuild their trust in them.

Also trust is conditional upon the matter in hand don't you think?
It is a communication between people of what is expected and agreed. You expect your Doctor to diagnose you and prescribe you the correct medication, if he does this then he becomes more trustworthy. Would you trust your Doctor to drive you to the hospital? What if he doesn't know how to drive? Your trust is conditional on what you know your Doctor can or cannot do for you.

In my life I trust my partner to be loyal to me. We have talked about our feelings and we know what we expect of each other. Neither of us have gone back on this expectation. However, my partner often goes to the shop for me and he's really forgetful. Even if I write him a list he gets things wrong. So, basically I can't trust him to go to the shops for me.  I can trust him to be true to me and to look after me but I can't trust him to do the shopping! Trust is condition to the matter in hand.

How easily to do you trust?
What do you trust in yourself?



Wednesday, 21 September 2016

Getting Creative with Photographs

I remember years ago when someone said 'if your house was on fire what would you save?' I'd always reply my photograph albums, they contained all my memories, so precious.

These days it's not such a worry. You don't even have to save your laptop because you can guarantee your photos and memories are backed up somewhere online.

I  do still love photo albums though, I feel there is something so relaxing and enjoyable about creating one. Back in the day (I don't believe I just said that on my blog!) I would collect my prints form the chemist and come home excitedly to fill an album. I have albums for all of my babies, all of my holidays and special occasions, going back many many years.

Here's one I made in May 1989. The Little boy is my eldest son and the young pregnant woman is me!
























I used to buy quality albums which were often leather bound, they had to stand the test of time, just as this one has for 27 years.




I still love my photo albums. It's great to have all your digital photos online but I think it's lovely to be able to look through all your favourite photos in an album. Not only that but they are much nicer to share with family and friends too. I'll never stop putting my photos in albums.

These days it's much easier with your digital photos, you can click on a site like Printerpix and upload your photos in seconds. Then you can choose which type of album you would like to create and add your prints.

It's still relaxing and creative completing an album online. Plus you have the thrill of seeing your book arrive when it's printed. The photos don't fall out and get lost or damaged. It's a real book of all your memories for you to hold and share. I can't get enough of them.

I have made a book to remember our Summer this year. We have lots of memories with days out and three birthdays in the summer. It's great to have all those memories in a book to keep forever.

I chose a spiral bound 20cm x 20cm book with a vinyl cover.  First you get to choose your theme and there are lots to choose from. If you don't want anything too fancy you can just pick a colour.
I chose the Sunshine theme for our summer book.

Next you have to upload your photos which are then saved for you. You can add to your photo collection at any time.
I picked the colour and photo for the front cover and added the text Our Summer 2016. Then I let my creativity begin.





























The themed books come with background and places to put your photos, you just have to drag and drop them into place. You can also change background and text, or add your own text.  Here is a page about our trip to Hatton Farm.

You can also add extra boxes to pop your photo in, or even have your photo the full size of the page. In fact you can change anything and everything to suit you. It really is a creative process. 




I've not had a spiral bound photobook before  but I was happy with this one as sometimes the board ones are not so easy to open flat. You just need to avoid adding photos or other elements to the spiral part. 



I managed to fit 28 photographs into my book which is a great amount for a small book. I really enjoyed creating it and can't wait to start on the next book in my collection.

I created my book free in return for this review but it would normally cost £9.95 which I think is great value. The vinyl cover  is made from frosted plastic, You can't really tell from my photo but this is the book with the vinyl cover. 





























I'm hoping the cover will keep it safe and it will last as long as my old album.

I'm looking forward to creating my next photo book of my wedding reception photos in November. I'm thinking of a nice leather bound photo book with a window at the front for my first photograph. They start from just £28.95 for a 20 page A5 book.



************************Special Offer for my Readers****************************

If you'd like to have a go at creating your own photobook (or any product from your photos) Printerpix are offering my readers a fantastic 60% off site wide with the code RAISIEBAY when you click through this link http://www.printerpix.co.uk/PIXSALE/ The offer is valid until 30th October 2016.




Disclosure: I was sent my photobook in return for my review. All thoughts and opinions are my own.


Tuesday, 20 September 2016

Even I Couldn't Imagine This!

I saw my neuro-consultant last week, the first time since I was released from hospital back in January.
I took notes, asked tons of questions and spent the entire consultation in a complete brain fog. He had to tell me three times where I had to go next for a blood test. I thought I'd be waiting a while for my letter but it came through today, less than a week later.

I've always had problems with Doctors and hospitals, I get the feeling that they don't believe what I'm saying and that I'm making up symptoms. I don't know why, I guess I've been fobbed off quite a few times. Last year I went into hospital in an ambulance with crippling pains in my side. Now, I'm fifty years old and I know what most 'normal' pain feels like and this wasn't normal. By the time I got to hospital I'd had an entire syringe of morphine admitted every two minutes until the pain started to feel a bit better. In fact by the time a Dr came to see me in a cubicle I was practically floating with delight. The Dr proudly claimed that I was no longer in pain and could go home. So I did, I can't even remember how, I was so high on morphine. I slept for the rest of the day. The next day the pain was not so bad so I just got on with it, like you have to. I never had any explanation of what caused that pain but it's not come back so why should I worry? Afterwards I did think well why did the Dr who examined me think I was in hospital if I wasn't in pain. Did he not take into consideration just how much morphine I'd had to ease the pain. He didn't seem to be bothered as to why I'd had it in the first place. You can see why I am a little wary of Doctors and why I tend not to complain much.

When I had my TM attack I refused a trip the hospital in an ambulance. I couldn't face it being 'nothing' again and walking away like I was some complete hypochondriac.

I got my brother to take me to hospital later the same day and ended up being admitted for two weeks. I guess it wasn't 'nothing' then.

Anyway, I'm waffling on again, so I get back to my letter today.
Apparently I only have a 'possible' diagnosis of TM. All my tests came back clear and apparently my scans were normal, despite a Dr telling me, in front of my partner, that I had inflammation in two parts of my spine. This is a little confusing to say the least.

So, do I, or don't I have Transverse Myelitis? Your guess is as good as mine.
I do have many shared symptoms with other TM sufferers though, so I think the diagnosis fits. I guess the consultant wants to be more sure.

I had my reflexes tested and they were brisk with bilateral finger flexion jerk, Hoffman signs and Bilateral Extensor Plantars. Sorry for getting technical on you but they are exactly the same as when I was in hospital and I've googled them all. Basically they are all common indicators of spinal cord damage.

I had a blood test on the day for anti-GAD antibodies and the letter explains that this was to rule out Stiff Person Syndrome. This was new one for me, I don't have it, and I'm very pleased about that.

Next step is an EMG which is some sort of muscle test. It is quite obvious that I have muscle stiffness and spasticity and my consultant is trying to rule out everything that could possibly cause this.

So, I'm kind of in Limbo Land! I think Transverse Myelitis fits, but my consultant is wary of putting it as a direct diagnosis, so I don't have a diagnosis. This makes me feel confused and wary. If I know what's wrong then I know I will be getting the right treatment. Even though you can't get a direct prognosis with TM at least I can 'hang out' with other TMrs and learn from their experiences.

Once again, even though this sounds silly, I feel as though I'm imagining everything, that it's all in my head, or I'm making it up. Even I couldn't imagine this, could I?


Monday, 19 September 2016

A Trip To London! The MAD Blog Awards 2016

Last Friday it was the prestigious Mad Blog Awards at the Royal Garden Hotel in Kensington, London.

I was attending as a finalist, for the third time! I only get to go because of my lovely friends and readers who nominate me and vote for me. I didn't win, again, but that doesn't really matter. What matters is getting to spend the evening with lovely people celebrating all blogs and how blogging changes your life.

This was my first time attending as a disabled person. Before, I've gone on my own, a little nervous travelling around London but the excitement overtakes all nerves.

This time my partner had to come with me, to push my wheelchair and help me get around. I can't do anything without someone helping me now. It makes me sad, but it also makes me appreciate the people in my life more.

It's not just the people in my life, sometimes strangers help out a lot too.

Let me tell you a story. It all began on Friday lunchtime. All packed and ready to go, I was waiting at the bus stop with Graham, my partner, to get the bus to the train station. The bus was really late and I was getting worried we would miss our train. Graham always says I panic to much, he calls me a flapper. Then he realised that he hadn't packed his shoes so we had to go back home. It was getting late so I called a taxi to take us to the station. We told the driver that we were late and he sped off into town like lightening. I was sitting in the back focusing on my mobile to distract from the speeding driver.  We got to the station with five minutes to spare when disaster struck. After getting out of the taxi, getting my wheelchair out of the boot, getting me in the chair, sorting out the luggage, we were in a bit of a panic and Graham may have just been pushing me a little too fast when he hit a water drain...and I went flying, literally, I felt myself propelled into the air and there was nothing I could do. Thankfully I had a suitcase on my lap, that also went flying and I landed on top. That saved my upper body, other wise my hands, arms and face would have probably been hit pretty hard. There was nothing to save my legs though and it's incredibly, incredibly painful for me to lie face down. Everything became a complete blur but I was aware of so many people asking if I was ok, asking Graham if he needed help, and Graham pleading how sorry he was. I was lifted up back into my chair. My legs had given up working altogether and I was shaking with fear. Everyone was so nice and helpful and I don't even remember seeing a single face. Just voices of kindness.

The station assistance man who had been waiting for us was very understanding and said we could get on the next train in twenty minutes. He told us to grab a coffee and take our time.

The train was late, there was a tree on the line.

Were we ever going to get to London?

Finally, placed on the train, nerves started to settle a little and we pulled out our packed lunch, even though it was well past lunch time. We were about an hour into the journey, which was pretty slow because of back log of trains, a train traffic jam, over the delay clearing the tree. Then Graham said to me, did you pack my shirt! What! I thought he'd packed all his clothes, now it looked like he was attending the awards shirtless! Don't panic, I remember Sally saying there is a TK Max nearby for those last minute emergencies. He'd just have to go and buy a new shirt.

Then the train stopped and into our coach poured a bunch of football fans, beer cans in hand, loud and singing football songs. Oh, no, just what we needed. We shrank into our seats and thought maybe if we were quiet they wouldn't notice us. Graham is not a shirker though, he talks to anyone. After about ten minutes he piped up..."are you Leicester supporters then' This made me snort with laughter, along with the football 'hooligans' They had talked about nothing but their players and sang their teams songs, I knew they were Liverpool supporters and I don't like football. This broke the ice though and they turned out to be really nice lads. Graham chatted football with them for the rest of the journey. When we arrived they offered to help him lift me off the train. I declined, the station assistance where waiting for me with a ramp...much safer, especially after what had happened earlier.

We had decided that we were going to walk from the station to the hotel..yes, walk. It was only a 40 minute walk according to Google maps with most of it being through Hyde Park. We started off in the wrong direction but I corrected that quickly and we about turned and were soon on our way. The rest of the directions were easy to follow and we soon arrived at the park. At an entrance with steps! Google maps didn't tell me that. Refusing to be defeated and with the end of the journey in site we conquered this obstacle by me getting out of the wheelchair, grabbing the rail and walking up the steps. Thankfully they were small steps and wide apart so it was not so bad, and easy for Graham to lug the wheelchair up too. Once in the park we headed in what we hoped was the right direction, enjoyed some of the lovely views and soon arrived at the hotel. As soon as we arrived in the room Graham sped out again to buy a new shirt, luckily he got a real bargain.

We arrived at the Awards after freshening up and dressing up feeling like the rest of the day didn't matter and we had a truly wonderful evening.

I got to meet a few ladies that I'd only ever talked to online before which was lovely. I also caught up with some friends old and new. The food was delicious, the wine flowed and more new friends made. Seeing each winner called out was really exciting and it was lovely that every winner took the time to say a few words. I know that must be nerve wracking standing on a stage and speaking to everyone. I couldn't do it, which is one of the reasons I'm glad I've never won.

Every award was well deserved but it was lovely to see my friend Steph from Steph's Two Girls on the stage for the Outstanding blogger awards. She didn't win but you can't deny that Becky from Baby Budgeting deserved her award. Also, a big congratulations to my fellow Brummy Emma from Brummy Mummy of 2 for her awards for best use of video and Blogger of the Year!

Helen Lederer was our host and she was brilliant. She did channel the last years host a couple of times which was hilarious, but I think she did a better job. Probably because she wasn't so drunk.

All in all, despite our eventful journey, it was an incredible evening. Enough of my waffling, lets have some photos.

First up, here's me, Steph and Jeanette, we've been friends through our blogs for years now! It's the first time that I've met Jeanette though and she blogs at AutismMumma.

 This is me and the lovely Helen Lederer.


I always find it so difficult to photograph the food nicely when we eat by candlelight and only have our phone cameras, but you do want to see some don't you? 


The dessert had mixed reactions on our table. Personally I loved it, it was fresh and light and the flavours worked well together. And you could eat the green stick.


Here is Helen doing her job, she was really funny and such a nice person.

 All the nominees for the Outstanding Contribution Award. Well done all of you and keep up the good work.





















As always it was a great evening thanks to  the Tots 100 team who work so hard to bring this all together each year. A big thanks to everyone who nominated me and voted for me. A big thanks to the lovely Karen from Mini Travellers for helping me when I had to be away from Graham (and big congratulations on your win!)

Sunday, 18 September 2016

My Sunday Photo 18th September 2016






















I hadn't prepared a photo for today and I was going to leave it this week as I don't have the energy to even think straight at the moment. Then while looking through my photos this week I saw this one I took the other morning when it was particularly foggy.



These are the trees at the bottom of my garden. They are not my trees, they line the canal and have been here for many years. I've shared them before at the beginning of Spring. Now you can see them fully clothed in green before they start changing again.

I had to share this foggy photo because it's exactly how I feel today. I had a fabulous night at the Mad Blog Awards on Friday, but with all the travelling to London and back and the night out I'm completely pooped! And my brain is covered in a thick fog just like these trees. I had an early night last night but I know it will take a while to recover, for the fog to lift and for me to feel okay again.

Also like these trees I'm feeling as though I am approaching the Autumn of my life and that there are many changes I have to face. A whole new journey ahead, I may be foggy but it's quite exciting too.

Once again I'm joining up with the lovely Darren from Photalife who I met again on Friday and I didn't recognise straight away...sorry Darren. You know that moment when you see someone and you know you've met them before but it take a little while to sink in...no? Just me then and my foggy brain.


OneDad3Girls

Friday, 16 September 2016

MAD - Word of the Week


No, I'm not MAD, although some might disagree. My word of the week is MAD which stands for Mum and Dad and I'm  a finalist in the 2016 blog Awards! I've been a finalist three times now, I've never won and you know what they say, three times a bridesmaid, never a bride. Well, I really don't expect to win, I'm up against some fabulous bloggers in my category, Schooldays. 

Sarah from Extraodinary Chaos
Jenny from Let's talk Mommy
Karen from Stopping At Two

Good luck everyone! I'm looking forward to meeting you.

I also need to give a shout out to Steph from Steph's Two Girls who is up for an outstanding contribution award. I've been with Steph every time I've been at the awards but this is the first time she's actually been a finalist so I'm so chuffed for her. She does a brilliant job at educating everyone about a specific type of autism, PDA, and helps so many people along the way. My fingers are tightly crossed for her x

So, thoughts of the awards have occupied my mind all week, I've my dress, shoes, bag, train tickets, hotel reservation and babysitters sorted for the littlies. I'm excited to be having a night away with my partner, we've never been away alone before. He needs to come with me this year as I just can't cope alone with my disabilities.

It's going to be a fabulous night and I wish everyone there the best of luck and if you don't win, don't worry,  it's still wonderful to have made it this far and it's such a wonderful event to be part of.

I'd like to say a big Thank You to everyone who took the time to nominate and vote for me. It really means so much to me.




via GIPHY

(This girl actually reminds me of me as a kid, thanks to my mum and her love of ringlets)

In other news...in case you read my word of the week a couple of weeks ago I'd like to report that I can now drive my car! Actually driving with your hands is pretty easy, I just need to learn to brake a little more gently.

Also, I had a visit with my consultant which I talk about more later. I waited 8 months for this appointment and learnt quite a lot. I also had some new medication which might help my spasms. I'm still recovering but I've lots of hope to get much better.




The Reading Residence

Wednesday, 14 September 2016

My Easy Lemon Drizzle Cake

I love Lemon Drizzle Cake, it's definitely one of my favourite treats. This recipe is really easy because it's an all-in-one cake, which means you just put everything in a bowl and mix it up then bake. The drizzle is really simple too and so is the icing, although you may leave this off if you wish.

I would give just one tip though, don't do as I did an fall asleep while your cake is baking! I didn't burn it but I would have put a piece of grease proof paper on the top for the last ten minutes to prevent it from browning as much.






















Ingredients:

200g soft butter
250g caster sugar
3 eggs
250g self raising flour
1/2 tsp baking powder
finely grated zest of 2 lemons
100ml milk at room temperature.

For the drizzle:
lemon juice from 2 lemons, leaving about 1 tsp for icing
2 tbs golden syrup

For the icing:
1 tsp lemon juice 
icing sugar


Method:


pre-heat oven to  180C/gas mark 4
grease and line a 1lb loaf tin or 20cm cake tin

Put all the cake ingredients into a large mixing bowl and mix with an electric food mixer or a wooden spoon until the batter is completely smooth.

Pour batter into cake/loaf tin and bake in middle of the oven for about 40 minutes or until a skewer comes out clean. You may wish to  cover the cake with greaseproof paper for last 10 minutes.

Just before cake has finished cooking put the lemon juice (reserving a tsp for icing) into a pan with the golden syrup and warm gently.

When you take the  cake out of the oven, prick it all over with a skewer then pour over the syrup mixture before taking it out of the tin.

When the cake has cooled remove it from tin and cover it with a drizzle of icing made with the lemon juice and as much icing sugar as it takes to make a runny icing.

Enjoy!



























Marilyn's Treats Thursday Favorite Things Feature

Monday, 12 September 2016

Raising Awareness for Transverse Myelitis

Recently it was asked on a Transverse Myelitis forum whether we should raise awareness of the condition. Most answers where that awareness needed to be raised with doctors more than the public. Many doctors have never even heard of the condition so what is the point of the public knowing.

I believe it's like a circle, the more people you educate then the more doctors will learn. It's hard to persuade a doctor that there is something wrong with you when it doesn't fit neatly into any of their normal criteria, but it's not impossible. I know this from experience.

When my daughter was having problems with her neck we knew for certain that it wasn't a traumatic cause.

People get confused with the term traumatic, often anything involving a hospital visit can be considered traumatic mentally, but in a doctors terms it means caused by an accident, a fall or similar. My condition is called non-traumatic but it has given me tons of trauma to deal with.

My daughter did not fall or hurt herself, but her neck was twisted out of shape and the discs in her spine had moved. One was fractured but that was caused later by the twisted discs rubbing against it and wearing it down. Throughout most of the two years of my daughter's treatment her consultant insisted it was a traumatic injury, he would not accept our pleas that it wasn't. Eventually WE persuaded him and he sent us to a rheumatologist who confirmed that my daughter had a problem with her connective tissues and it was possible for any of her bones or discs to move by themselves, without involving a trauma/accident. He consultant now has non-traumatic in his notes. We changed his mind by persistence.

So, going back to the original question. If we educated enough people about our condition then maybe this too would spread to doctors.

I was one of the lucky ones, I ended up in a hospital with one of the few consultants who dealt with my condition and gave me the correct treatment straight away. Without it I may not be able to walk at all now. How scary is that? The truth is there are people out there with Transverse Myelitis who have been misdiagnosed, not received the correct treatment and often left in a much worse condition than they need be.

The first doctor that examined me at the hospital believed that I had Multiple Sclerosis. The trainee doctors (that visited me daily on the ward) believed I had another condition, Guillian Barres Syndrome. I could have easily been mis-diagnosed.

Transverse Myelitis can present itself in many ways and affect different parts of the body. The main cause is the de-myelation of the spinal cord caused by inflammation. The de-myelation is called  a lesion and can happen on any part of the spine. The body can be affected from any part below the lesion, so if it's in the lower back, then the legs can be affected, if it's in the neck then all parts of the body below the neck can be affected. The lesions can also be found in the brain and the eyes can be affected. It's a complicated illness that is very difficult to diagnose. Or, it can be easy to diagnose by a doctor who has heard of it!

The effects of Transverse Myelitis can be sudden or slow to appear. Some people have minor problems for years before they are diagnosed. Others, like me, can have drastic symptoms appear in a matter of hours.

I have decided that I want to help raise awareness of Transverse Myelitis in whatever way I can, including using my blog as a platform. You can already read my story so far by clicking the Transverse Myelitis link at the top of the page.

My first tip would be...

Don't ignore pins and needles! Pins and needles are common and occur anytime you have not moved a limb for a long period of time, or have been sitting or leaning on it. Most people feel them quite regularly. However, if you are getting severe pins and needles that last for a long time and become more of a nuisance then they could be hiding something more serious.
When I had my pins and needles that wouldn't go away they felt so bad I called 111 for advice. They sent an ambulance straight away but I refused to go to hospital with pins and needles as a symptom. Then they started to spread through more of my body and I knew that wasn't right so I gave in and went to hospital. I arrived just in time.
 The pins and needles where a symptom of my spinal cord being inflamed and I was left paralysed from the waist down and with very little sensation in my arms. After an MRI and Lumber Puncture I was diagnosed with TM and given steroids by IV. This helped me a lot and by five days I was back on my feet. Although I did have to learn to walk again and I still can't walk properly now. If I'd not been treated properly the inflammation could have continued to damage my spinal cord and I may have not regained the strength in my legs and arms until much longer, or possibly never.

I hope that with more people knowing about this condition that there will be less mis-diagnosis and the correct treatment administered quickly.


IN the meantime, I'll still enjoy my life with my family :)
























I'd like to add a big shout out for the those with TM who are competing in the Paralympics.

Gordon Reid - Tennis
Natasha Baker - Dressage
Lauren Rowles - Rowing
Phil Pratt - Basketball


Sunday, 11 September 2016

My Sunday Photo 11th September 2016

drawing by candle light - raisiebay.com





















On Monday evening we had a power cut. Everything went off half way through Eastenders (tsk.) Apparently there was an explosion and fire in a nearby substation. Some neighbours heard it, but we didn't.
It happened just before dusk, so one minute we had light streaming in the windows, next it was really dark. We lit candles and fetched the torches out and I was wishing that I'd made that cup of coffee before Eastenders started. I also realised the disadvantages of not having a gas cooker any more.

The kids were both bemused and excited. The laptops still worked, but there was no internet connection. It was too dark to play..what were they going to do? Nothing stops Boo, she grabbed her pencils and began drawing by candlelight. That's when I captured this photo, no editing or filters, I like it just the way it is.

It was more than two hours before we had our electricity back, by this time the kids had been taken to bed by torchlight.


Photalife

Sunday Snap

A little Note About Positive Reviews on Raisie Bay



Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I've also seen negative feedback with say things like, I had to return this item because the colour did not suit me...is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I've loved. If I don't love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It's always the latter.

This is my blog, my place and I'll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.
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