Sunday, 14 October 2012

Go and put the monkey on the fridge!


So again I have been sleeping most of today but trying to sleep with fibro is like trying to sleep on a bed of nails. I am exhausted and wiped out even though I slept part of last night and most of today. I also need a new mattress desperately but all the decent memory foam ones cost a fortune that I don't have. I could buy a cheap on but there isn't really much point as I need a memory foam one in the long run to help with my fibro.                                                                    



According to the British government and ATOS most of us with chronic medical conditions and disabilities are fit for work despite some days hardly being able to make it to the toilet how is that on? I think a lot of people assume that we are well off and can afford things which is just not true. We struggle. For example, Aldi are doing a heated blanket thing at the moment and a lovely lady posted a link on our Fibromites group. We all would really love one but the common theme was that none of us could afford the £30 that it would be to get one! 

I think a lot of us worry and struggle with money and many currently have appeals going through to get extra money to help from the government. I will complete mine when I have been to my next consultant appointment next month.

The money that I do have I like to spend on my girls. I like them to do their activities and have fun. It's a way of me being able to do things with them in a way as I can watch them. Just because of my illness they shouldn't miss out!

Looking forward.

I am now looking forward to going away for a week in half term which is just under 2 weeks away. I love getting away to our favourite holiday park in Weymouth. I can't wait for a change of scene. Getting ready to go on holiday is exhausting enough for anyone but I hate it. I can either try and pack in stages and spread it out or do what I normally do and do it all in one go and wipe myself out. This time I need to try and pack in stages. Firstly, I need to do a list secondly I need to remember where I have put it!

Fibro Fog.
So I have been having bad Fibro fog this evening. It's hard to focus on things and it take ages to complete anything. For instance it is taking me forever to get this blog done.

One example of Fibro fog is when you say stupid things. This can be embarrassing in front of people who don't know you or people who don't understand about the fog. This is one of the reasons I want to cover this area in my blog as I am very embarrassed when I am like this and just want to hide away. My children get used to the silly things I say and we laugh about it. typical example of something I have said is ' Go and put the monkey on the fridge'. This would translate as go and put the money on the fireplace! You can see why I can get embarrassed by this!
It can also be very frustrating when you want/ need to do something and you forget, have difficulty concentrating and following conversations. I can begin a sentence and forget what I am saying halfway through. People can also talk to me and I struggle to concentrate on what they are saying and appear like I am not listening. I know that my own mum gets very frustrated by me so I am embarrassed by what others will think. The fog seems to be getting worse and worse lately please be patient with me.

                           I've got Fibro Fog what's your excuse?


Symptoms of Fibro Fog.

For people with Fibro this is one of the most difficult symptoms for us to deal with and also explain. It is a tenuous  cognitive impairment that is NOT psychological in nature. It is also NOT psychosomatic. Fibro fog is real and it is very annoying.

The symptoms are: 
  • Short term memory loss
  • Difficulty remembering where you put things
  • Difficulty remembering plans
  • Difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
  • Difficulty finding the 'right' word in conversation                    
  • Difficulty remembering simple numbers                                 
  • Difficulty transposing letters and numbers
  • Trouble concentrating and focussing                   
  • Mental confusion and fatigue
  • Loss of short term memory

So when I have forgotten to meet up with you or forgotten times, details etc I really have. I forget a lot of things hence I have to write everything down. The only trouble is then I often forget to look! I am not standing people up I have forgotten the doctors, dentists, hospital appointments etc too! Best thing to do is remind me - I wont take offence I will be glad you have reminded me!

Those that should know.

Having Fibro means you enter a kind of postcode lottery when it comes to your fibro care. It often takes
years to even get a diagnosis and then even when you do some gps know nothing about it or even believe in it. The trouble is, is it's one of those illnesses that have little research done into it and where the research is is mainly in America. 

I can count myself lucky in that I have a fab gp surgery but I know that many people wish they had. The above cartoon is a joke but it does actually happen! I am currently under a few different department at the hospital for various things and experience have been very varied. I had a massive battle with the hospital to get the diagnosis in the first place but now I have it doors seem to be opening up. Although how long for I don't know. Getting a diagnosis is a relief in one way as you know it's not in your head.

This week I am back at the occupational therapy department. It is exhausting going up to the hospital one 2 buses each way for appointments and it wipes you out. I also have tests to chases up at the drs and need to get my B12 injections re done. I can see this week will wipe me out. With Fibro you have to pace yourself but it's easier said than done when you have all these appointments and other things you need to do as well as being a  parent, run a house etc. Pacing is easier said than done!


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