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!
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.|
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!|
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!