Saturday 30 March 2013

Week 1 - driving, driving, driving

Dear Everyone,

Amy here again.

This week's ratings:

Sleep: 3
Pain: 2
Migraine: 1
Fibrofog: 4
IBS: 3
Tiredness: 3

(1 = minimal, 5 = chronic)

This week has been predominantly spent in the car.  A long journey to Lincolnshire to visit my Grandparents (Mum's parents) which Mum drove the majority of herself meant she spent a great deal of time in the car and had to deal with the associated aches and pains.

You'll see from our ratings that Fibrofog has been a problem for Mum this week.  I've noticed a lot that she's really pulling for her words, and for her its like two words have moulded together and in her mind she has to separate them out before she can say them.  As a family member, I haven't been sure whether its best to prompt her with the word she might be looking for to help her out or let her think of something herself and speak on her own.  She tells me she doesn't mind us trying to help her out a bit because she can't move on until she has the right word that she's trying to get at. 

Fibrofog was a very big problem during work for Mum this week as she was in meetings and struggling to come up with the word she was looking for.

Although its undoubtedly frustrating for Mum to be searching for the right word it does have funny consequences from time to time.  Recently she was in an important meeting with her colleagues and superiors when she was trying to read out the word "content" but couldn't manage to voice the word.  Unfortunately, the word she did manage to blurt out did begin with "c" but ended with "unt" and caused a mixture of suprise and hilarity amongst her colleages!  Embarassing for Mum but when she came home and told us we could barely stand up for laughing so much - luckily she saw the funny side too!

Does anyone else have lots of problems with Fibrofog?  Any tips?

Have a good week,

Amy and Dee.

Introducing Amy

Hi Everyone,

I'd like to introduce myself - my name is Amy and I am Dee's 22 year old daughter.  You'll see there haven't been any posts for a while and that's because I'm sure you can imagine managing a blog on top of all of the other things my Mum tries to keep on top of is often too much.  Therefore, we have decided from now on to do the blog together because we both think it's important not to let the blog slide.  So once a week Mum is going to talk to me and I'm going to put it down as a blog post - I hope this is ok!

Also, we're going to do it a bit differently - we're going to track and rate how Mum feels and her different symptoms every week; with a bit of luck it will help us as a family identify triggers and patterns and also things that help ease certain symptoms.  You never know, some of the things we talk about might ring a bell with you or a loved one - its surprising the difference little things can make.

Every week we are going to rate sleep, pain, migraines, fibrofog, IBS and tiredness out of 5.  1 being minimal, and 5 being chronic.  We're going to try and compare this to what Mum has been up to this week and could therefore have triggered it - whether she has been travelling a lot with work or under a lot of stress in other ways.  Then, we'll talk about what Mum has done to try and combat this and how successful it was.

As Dee's daughter, I hope that this weekly journal will help us as a family understand better what affects Mum's FM and what we can all do to help alleviate this.  As a house full of adults we should be better placed to empathise, but I'm sure sometimes we are too wrapped up in ourselves to see the potential affect our own behaviour has on Mum and her FM.

I hope this makes sense!