Saturday, 13 October 2012

Life behind a screen.

Let down queen.

The inspiration for tonight's blog is based upon my guilt for letting people down...again. Tonight I was supposed to have gone out with a group of friends from school for their joint 30th Birthday meals then some were going out after. Fibro stole my password and I am having a flare. A flare means that I was awake all last night in agony and then I crashed out today sleeping on and off and I am maxed out on painkillers and my pain on the pain scale is at a 9. Thank goodness for my mum who has looked after my youngest for me all day whilst my eldest is at her dads. Tonight I had to become the let down queen and cancel on my friends as I can't get out of bed.


Life revolves around passwords except Fibro often steals the one for 'real' life.


The role of the social network.

The internet and social networking sites such as Facebook are such a life line to people with Fibro and many other chronic conditions and disabilities. As the winter approaches with it's bad weather so many more of us spend more and more time inside due to the weather and how this affects us. For me the cold damp weather plays havoc with my pain levels and mood. Therefore for many of us a lot of the contact with the outside world is through online communities and support groups. These become a lifeline and a place where you can talk to people who experience similar things and you can ask questions and share things without feeling judged and know that people care as they know what it's like. For myself it's been a way of finding and connecting with people with the same condition and gaining friendship and support.

Helpful groups I am in.

Fibromites facebook group                         

Disabled friendship and support

UK Fibromyalgia facebook group

I also follow some other fab mummy friends who are bloggers who have their own battles some also have Fibro their links are to the right of my blog under who I follow but I will also add them here.

Firstly this is a fellow Fibromite who I also know from our children with allergies and intolerances group. She is another mum who is coming to terms with Fibro.

Bad ass and disabled mum.

Talking of mums with children with allergies and intolerances next is a lovely lady who has children who have faced and are facing many of these battles. Her experiences with this have led her to set up a charity to help others struggling read her blog here.

Special allergy children.

Next is superhero mum finding her way through life with disability.

superhero mum

Next is a mum who is riding a roller coaster as a parent of special needs children.

Life is a rollercoaster

I also follow the crutch collective helpful for info about the dreaded ATOS and benefit claiming.

the crutch collective

Their facebook page:

The-Crutch-Collective facebook group

Dear Harry a blog documenting a childhood and it's ups and downs:

Dear Harry


                                                            Fibro and family.    

As I already stated in a past blog I am a single mummy to my 2 girls Lillie 7 and Evie 4. They mean the world to me. Fibro impacts us all but we have all had to learn to adapt to my condition and find ways to work round this. This doesn't mean that as a family we no longer have fun we just find ways to have fun depending on how my Fibro is affecting me at that time.

My parents are divorced but as a family we are all still very close. My parents are good friends and we all go on holidays together a few times a year. This is important as financially none of us could go on our own but also in terms of having a disability and illness I need help. My dad himself is also disabled and walks with a stick and doesn't have much speech due to having a stroke 11 years ago but he is a fighter. We have our ups and downs but what matters most is we all pull together. We are all very close!

Family slide show please click to watch.       

 My parents are very supportive of me and help in the ways that I can. Fibro affects the whole family and often my mum has to help out with the children when I am not well. As a result this just makes us all closer. My children adore their Nanny and Grandad and love being with them  .    


Coping day to day.

The thing with Fibro is that it can vary day to day. This leads people to often think you are making excuses putting things on or milking it so to speak. Having Fibro is like constantly riding a roller coaster wondering whether or not the safety harness/belt is going to work today or not. Everyone with Fibro experiences things differently so you can't think what works for one will work for another. I will try to explain how I experience it daily.

Fibro for me is like having the energy completely zapped out of me all the time. I struggle to sleep at nights despite medication due to pain, insomnia, headaches therefore when I do get some sleep I often wake up un refreshed.


Days when the children are at school and nursery are not so bad as I get to sleep during the day. I pay for my youngest to stay all day until I pick her sister up from school. This gives me the whole day of peace and opportunity to rest. 

After school it's all go. This is why I need my rest in the day. I don't want my children to miss out so they go to their different activities swimming, gymnastics twice a week, art club, Brownies, tutor comes, youth club. It's exhausting just thinking about all their activities but they are busy bees and they enjoy it. I take them and enjoy watching the activities and see them achieve. Although often I am just sitting there this leaves me exhausted. I don't drive so everything is by public transport which is exhausting.


Weekends and holidays are where I often struggle and crash out. I have to try and plan things and find things to do with the children that will work for us whilst all still being able to enjoy ourselves. However sometimes a flare or a busy week can put pay to this. I think most parents with Fibro would agree that weekends and holidays can be dreaded. We love our children very much but having them at home all day every day is exhausting. I am lucky in the fact that I get a lot of help from my mum and that my girls are very understanding.


Sometimes I need to walk with one crutch sometimes two and other times I can cope without. Although it's more distances I struggle with. I tend to pace myself and not do too much if I know I am going somewhere. This is a perfect example of Fibro. I have to wear wrist splints at night due to the pain in my wrists and hands too. I look forward to using my massager's they help slightly. I pop a lot of pills to get through the day.


How do you know a Fibromite is coming in the dark?

You can hear them rattle!

One thing I do find is it is very hard to admit you're struggling and need help. I like to show I am strong and not weak having some through so much in life it's almost as if that's what is expected of me. I only really let my family know just how much I struggle and how much pain I am in. When people ask how I am I may say I am fine or just smile but inside it's hard. I think a lot of people with chronic conditions find it hard to admit they're struggling. We go through many appointments etc but people in our lives often don't know the half of it and this was part of the reason for my blog to let people in.


It is important to try and enjoy what you can, and make the most of good days. My children are my world and they are what keep me going. Fibro is like an extra member in our family but we work round it. It doesn't make you any less of a parent and I think it is important to remember that. I think we often get caught up in what we can't do but there is a lot we can do! Our children love us and we can still do things with them. We have to lean to adapt things and make things work for us but it CAN work!


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