Monday, 31 December 2012

Goodbye 2012, Hello 2013!

A year of ups and downs.

 What a year 2012 has been! I think the most life changing thing that happened during 2012 was finally getting my diagnosis of Fibro. A name, a label for me was a relief it had a name it defiantly wasn't in my head. However a long with this came the realisation that this is chronic, lifelong and often invisible.

2012 has been about adapting a learning what my limits are. It has been emotional realising what I can no longer do. I had to grieve for my old life. However, coming through that I have realised the things that I can still do. I can do things in different ways. It has slowed me down and given me time to re evaluate my life and what is important. Fibro strips you bare and exposes you so you have to have this time to stop and learn to adapt.

The year has been about hospital stays, medicine changes and investigations and more labels other than the Fibro. It has given me the title of being disabled. A first I hated this word. I was almost embarrassed by it. It was ok for other people to be labelled as this but not me. Over time I have grown used to the label and now am comfortable saying I have a disability.

Fibro Mummy.
Being a parent with Fibro is incredibly hard. Being a single parent with Fibro is awful. You are the sole person your children depend on. You have to be strong not only for yourself but also for them. Being a single mummy with Fibro is my superpower what's yours?


My children aged 7 and 4 have also had to learn to adapt to my Fibro. This has meant frustration for them as well as me I am sure but as a family we have muddled through. We have evolved and adapted. The girls have learn't that I need to rest when I say I am tired and in pain, but they also know that when I can I make an effort and do what I can with them. My eldest Lillie has told me she is proud of me being disabled and still doing things with them. It's not about quantity of time it's about the quality if the time you have with them.

Both of my girls have a very close relationship. They love each other to bits. They argue like all sisters do but they really do have a very close and special bond.


We have enjoyed 3 family holidays with my parents to Weymouth over the past year as well as a weekend in Liverpool. We have enjoyed trips to the theatre, cinema, and day trips. The girls have gone to their various extra activities including swimming, gymnastics, Brownies, Guitar lessons, art club, and youth club.

Fun is what you make it. I know despite everything I have had some great times with the girls in 2012. I try and keep things as normal as they can be for the girls. Well by normal I mean stable. I try to provide them with fun opportunities and things to keep them busy and do things with them when I can.

Some pictures of the girls enjoying various things over the past year:














Looking into the new year.

I don't make resolutions as I don't stick to them but I will share with you what I am looking forward to in 2013. Firstly, I hope that I have a favourable DLA decision without having to go to appeal (well I can live in hope can't I?!)


I am looking forward to going back on holiday to Weymouth. Weymouth has been a place that I feel very relaxed in. It has almost become our second home. I really do love our family holidays. I am looking forward to a weekend away in Birmingham for our Fibromites meet in march. It will be lovely to all meet up! I have some things planned for the girls - going to see Disney on ice, Ben and Holly and One Direction. My eldest is a huge fan of 1D and secretly so am I!

2013 will hopefully see me learn to pace better too. I hope that some of the changes in medicines I am having will have a positive effect too. I have the hospital Fibro group starting in the next couple of weeks too so I hope this will help or at least  give me better coping mechanisms.


With Fibro it's easy to look at the negative side of things but looking at what you have to look forward to in the next year can make things that bit easier. I try not to let Fibro steal my happiness as that's the one thing I can control!


I have seen the following as an idea and I think it will be a really good thing to do to help me to remember the good and positive things that have happened.


Goodbye 2012, Hello 2013! 

Sunday, 30 December 2012

Surviving Christmas

Surviving Christmas.

Well I did it I survived Christmas! Christmas is an exhausting time for anyone but this year I have really noticed the chance in how much I can or can't do at Christmas. The build up to it all is tiring enough but then the festivities well and truly drain you. I had worn myself out Christmas Eve trying to make things special for the girls (still doing less than in previous years) so going into Christmas day I was already on the back foot.

We began the morning with the mammoth present opening and then came my first issues having to sit still whilst in agony and enjoy watching them open their presents. I also then had to open some of my youngest's boxes for her so she could get at the toys undo the ties to which really had an affect on my hands. By the end of the morning I had 2 very happy girls and one huge mess! I managed to fill 2 wheelie bins full of rubbish! By the end of Christmas day I was so proud of myself I had managed to stay awake all day but I was utterly exhausted!


Boxing day.

I had intended to spend boxing day in bed recovering from the previous 2 days and so be ready to go to a family friends party in the evening but things took an unexpected turn. My eldest daughter returned from her dads early so I had to get up and I therefore lost my day of rest. I tried to make the best of it with the girls and have a Christmas dinner all together but by 3pm I was dropping. I went to bed for a nap whilst my mum had the girls and planned to get up for the party, but when the time came I felt too poorly and knew that if I didn't get some rest then I wouldn't have been able to go out with the girls to the panto the next day as planned. It was upsetting for me not to go and this was one of the things that showed me just how things for me have changed in the last year. I have never not been able to go to this party, but I knew I had to be sensible and get my rest. My mum still took my girls and they enjoyed it and it gave me some quiet.



Trips out and about.
I have been trying to make the festive period a special time for my girls and included in that have been our trips out. These have absolutely wiped me out even just sitting watching shows but it has been well worth it to see my girls enjoyment. Firstly we went to see the pantomime Snow White. I managed to book super early so we had front row tickets which meant extra leg room for me which helped. The show was good my favourite part being when the cleaner lady came on and she sang 'don't cry for me' and we had to sing back 'I'm a cleaner' to the tune of don't cry for me Argentina. We also managed to get very wet from her cleaning spray which Lillie my eldest loved!

Lillie waiting for Snow White to start.

Evie waiting for Snow White to start.

After the show we all went to Pizza Hut for tea. We we're starving and I was too exhausted to be cooking when I got home.


Tired girls falling asleep on the bus on the way home!
That trip out cost me a day in bed resting the next day but it was well worth it. The girls really appreciate it when I go out with them they know how much effort it can be and how tiring it gets.

Christmas means visiting family so we have been to visit my dad who is also disabled due to a major stroke nearly 12 years ago now. My dad has limited speech and walks with a stick. My girls have always known him this way and are used to it and managed to understand Grandad very well. They love him to bits and he loves them!


As Christmas is so busy I often find we tend to eat out a lot over Christmas. It costs a fortune but it's essential for me to reduce the pressure on myself in ways that I can. Eating out means no cooking and no washing up!


Today I have had a lovely day we went to go and watch We're going on a bear hunt at the Arts Centre. It was fab and one of the best shows I have seen in a long time. It was very visual and kept us all glued to it for an hour. Both girls loved it and so did Nanny. We did get very wet though when they had to go through the river! I was so glad Santa booked those tickets! That little trip and the pit stop to McDonald's on the way home though cost me the afternoon in bed recovering.

To some people they think your just lazy taking all these naps after doing things but it really is exhausting and painful. I know it can be hard for people to understand that just sitting for a hour watching a show can be painful but it is.! Naps are not a bonus they are a necessity!



This Christmas has really highlighted just how much things have changed for me over the past year. It is hard when you see this comparison so bluntly thrust in your face but for me it's a fact of life and something I have to adjust to both physically and mentally. It can be very frustrating as we expect so much of ourselves trying to create the perfect Christmas especially for those of us who have small children. Family are often delayed at seeing the changes in what you can and can't do until you hit a flare too.

Over the past few days I have had my glands playing up in my ears and throat a sure sign that I am exhausting myself and that if I am not careful I am heading for a flare. Getting pacing right over Christmas well it all just seems to go out of the window and you get carried along by the momentum.

How are you?

I hate it when you see people over the festive period you maybe haven't seen for a while and they ask the dreaded question 'How are you?'  How do you answer that? Firstly I weigh up whether they actually want the truth or just making polite conversation. However generally I answer with a version of 'Ok just plodding on'. Well generally I am not ok, I am in immense pain a lot of time time. My sleep is shot to pieces I vary between sleeping for 24 hours solid to only getting an hour or 2 a night for weeks on end. Some nights I am lucky to even be able to shut my eyes! People cannot seem to grasp this concept though if you don't know what it's like. Pain is awful and to have it day in day out whilst taking your cocktail of pills only takes the edge off is incomparable for many. They know pain but for short periods. For me giving birth to both girls was much easier than living with Fibro is.

This poem was posted in  Disabled friendship and support one of the groups I am in earlier and I think this explains it quite well.


Online support from the groups I am in has become invaluable. To know I am not alone, to share things, worries which however big and small and know that someone is there and will answer is great. I am so glad that I have found these groups and they have become part of my sanity although some of the people in there are pretty mad like me!


Monday, 24 December 2012

Merry Christmas Everyone!

It's beginning to look a lot like Christmas.

It's Christmas Eve and I have been busy as usual. I like to make Christmas Eve special for the girls so we spent the day tracking Santa with Norad whilst doing lots of fun things. We've spent some time watching movies this morning then having a lovely makeover session nails, hair, lipstick, blusher and eye shadow. The girls loved it.

This afternoon we went to Coventry Cathedral to the journey to Bethlehem service. It's a lovely service where the children go dressed as nativity characters and then they move round the cathedral whilst the nativity story is told. My girls were angels. The carols are lovely but one of the girls favourite parts is at the end when everyone stands round the outside in a huge circle and they get a candle.


After the Cathedral service we went to Mcdonalds for tea something which we do every Christmas Eve. It's great as it means no preparing or washing up! In a busy time I have found that this is one of the best things to do.

This evening we have been to another church service at our local church the one which my daughter goes to for Brownies. Their service was a scratch nativity so people just turn up and then as the story is told they get given parts. Lillie was in her element as they asked for a Mary and her hand was straight up. She had to read quite a few lines and she was fab. Quite a few people commented after at how good she was at reading! Proud mummy!! The scratch nativity was good I did find it funny that Mary was played by Lillie 7 and Joseph played by a 40 something man! I know Mary was supposed to be very young and younger than Joseph but wow that's an age gap! I also got 2 lines to read being an inn keeper!

Santa Claus is coming to town.

Don't tell Santa I was Peaking will you!


Merry Christmas everyone!

I would like to wish all of you who read my blog a very merry Christmas to you and your families. Enjoy the festivities and try not to overdo it. I know for me it's easier said than done!




Elf on the shelf

Reporting for duty.

Firstly I shall start by explaining what elf on the shelf is for those of you who don't know. On the 1st of December Santa sends an elf or elves as is in our case to come and keep an eye on the children in your house. They report back to Santa on Christmas Eve when he returns to collect them and hopefully drop off the children's presents.

Our Elves are Elfis and Ella SnowBottom. Names inspired by myself. My girls love the names- the word bottom in there is a great hit! They are returning home to the North Pole tonight and both my girls and I are very sad about this. We have loved having them to stay and will look forward to Dec 1st 2013 when they will arrive again.

I should mention that the elves come alive at night and get up to mischief. These elves are far to naughty to work in Santa's workshop, but love coming to live at children's houses to entertain them with their tricks. It's better to show you their tricks rather than try to explain.....































Bye bye elves see you next year!!!! We will miss you!!!