Sunday, 24 November 2013

Leanne Tilsley Stop bloody moaning

Been missing for a while and not made any videos 
recently. It is obvious to me now that winter hates me lol. The dark and the cold seems to drain all my energy and leaves me unable to do anything it seems.

The only thing I seem to be able to do is watch the television and have just watched the Coronation Street Omnibus. 

Where do I start? I am losing the will to live watching Leanne drowning in self pity because she has had to spend a few weeks with a husband recovering from a head injury.

How the hell would she cope if they said there is no way he will ever recover get used to it?

If TV programmes are going to tackle these issues I really wish they spent some time with chronically ill people and their carers to see what life is really like, when they know it is never going to improve.

I have been stuck in my bedroom for 6 years now. I rarely leave the house and if I do it is dentist or doctor. I last had a night out at a karaoke 14 years ago. I haven't been to the cinema in over 19 years and can never go now as it would be too uncomfortable to sit in those chairs for hours, and my autistic daughter would hate it.

I have to force myself to smile daily and make the best of what I have or go insane. I try to be happy for people having a good life and wish them all the best.

 This is my life now and it will never change. My Husband has had to turn into my carer and understand my limitations and mood swings. He has been doing this for years and knows it will never get better. 

So Leanne Tilsley stop bloody moaning!

:0) xxxJoolsxxx

Friday, 1 November 2013

Fibromyalgia Friday 22

Hi everyone

Having the day from hell. I itch all over and am stressed to buggery!

All technology hates me today and I can't seem to do anything right.

Thanks for watching
:0) xxxJoolsxxx

Sunday, 16 June 2013

A Late Fibro Friday



Here are the answers to the questions asked and a bit of a chat with my Hubby


Thanks for watching
:0) xxxJoolsxxx

Friday, 24 May 2013

Gadgets





My newest video talking about a few gadgets that help me daily.

Sorry about the yawning, I was going to stop the video and re-shoot it but thought this just shows what living with Fibro is really like so left it in.





Thanks for watching
:0) xxxJoolsxxx  

Friday, 17 May 2013

Thursday, 25 April 2013

Pain poem

I wrote this some years back and just came across it again so thought I would share............

Pain.....................

If you could see it in every joint
All round my body and pressure points
Pounding never ending angry red

Would you have some sympathy
Would you perhaps believe in me
Or would you still say "I'm fine it's in my head"

If you saw me cry at night
Because I know I've lost the fight
And life will never be the same again

Would you stop and offer me
A hug a coffee or an ear
Or pretend you didn't hear and carry on

Some days I wonder why get out of bed or even try
To do some gentle housework or cook a meal
When I know that the next day I will be left high and dry
Wracked in agony and fatigued and on my knees

People with the common cold
Get fussed upon don't work they're told
Stay in bed and come in when you can

But people with what I endure
Are ignored and laughed at and even more
Are told to go and pull themselves together

Spare a thought when you next complain
Of a headache or toothache or other pain
You know yours will soon come to an end!

Julia King (09/09/2009)

Friday, 19 April 2013

Heat




A video from my You Tube Channel with some coping strategies I use.
 
There will be more of these to come.
 
 
 
 
:0) xxxJoolsxxx


Friday, 22 March 2013

An answer at last............


To follow on from my last post about the pain in my arm - it caused me to end up in A&E for the night!

I had got to the point where I would have happily chopped my arm off it was that bad. I had slept all day thankfully and woke at 9pm in total agony. Hubby wanted to take me to hospital but I said I can't do that as this is neither an accident nor an emergency. An hour later after trying Ice and Ibulieve I asked him to phone the hospital to see if there was anything they could recommend.

Next thing they are asking 101 questions and even though I assured them I was not having a heart attack they said they were sending an ambulance. The paramedic arrived in a car blue lights flashing within minutes of putting down the phone and started to do tests on me. He did an ECG, checked my pulse then got the Blood Pressure cuff out - I hate having it done it really hurts me but I thought I would bite my tongue and try and tough it out - Nope couldn't do it. I asked him to stop and he said ok I will just do the one - it inflates gets so far stops, inflates again - can you stop it please - no it inflates again - PLEASE can you stop it - starts to inflate again - it was at this point I ripped it off myself before I was reduced to a sobbing sniveling wreck.

He said I needed to let the pressure out first, I said I can't stand the pain and he looked at me like I was mad but I have bruises to rove my point. I have only had to rip a cuff off once before in hospital when the nurse was the other side of the room taking notes while I was on the auto BP machine. I asked her could she stop it and she said no so I did it myself. She too looked at me like I was some sort of wimp or nutcase!!

Well I ended up in A&E anyway as I was clammy and heart was racing (due to the pain of the BP cuff) and the pain in my arm was immense. They wanted to rule out a heart attack which they did and I waited 4 hours to get told I need to see a rheumatologist and was given some strong painkillers.

It played on my mind all night and the next day that surely I couldn't be the only one who felt searing pain when having BP done. So I tweeted and posted on some Fibromyalgia sites. Thanks to the wonderful Becky   on Twitter I found my answer. She told me what I had was Allodynia, so I googled Blood Pressure cuff and Allodynia and found this the heavenly Angels sang, it was my hallelujah moment.

I have printed off a copy to carry with me so the next time someone tries to take my BP I can refuse with confidence. By the way that was Tuesday night and it is now Friday and I still have the bruises from the cuff!! More people need to know about this so they stop making those of us who really can not bear the pain of it feel silly and embarrassed as other people don't complain.


Saturday, 16 March 2013

PAIN

Funny isn't it how it only takes something just out of the routine of things, to push you over the edge? Now I am no stranger to pain, I have it 24 hours a day day in day out BUT.....a few days ago my shoulder started screaming and hasn't stopped. Did I raise my hand too high, or pick up something heavy? Who knows what started it, and it wasn't even anything I can remember so it can't have been me doing something I shouldn't, like having a life maybe!!

Hubby thinks I have pulled a muscle and he could be right but Oh My God it is sending me doo lally. I can cope with the Fibro pain I have got used to it. I have really bad IBS days and can cope with them too, I may shed a few tears but I can deal with it, but this!

I have tried heat, arnica, ibulieve, pain killers, sleep, pressure, ignoring it, distraction, everything short of cutting my arm off. A friend said I should try cold but I am miserable enough without bloody frostbite too. If anyone actually reads this and has any ideas please leave a comment. The pain is at the back under my shoulder blade and feels like burning and no matter where I put my arm the pain is constant.

Monday, 11 February 2013

DLA - PIP Sooner than we thought!!

*Amendment at the bottom

Got a dreaded brown envelope on the mat today and my stomach sank. When I opened it they said it was to do with my claim for my Daughter. Her claim  has recently been renewed and they said it was due for re assessment in 2019.

The letter said it contained important information about how DLA is being replaced with PIP. I thought all this was not happening till 2015 so it was a shock to say the least. I will copy from my letter what they said.

A new benefit called Personal Independence Payment will begin to replace Disability Living Allowance for disabled people aged 16 to 64 from 8th April 2013.

How might I be affected?

If there are changes in how your health condition or disability affects you on or after 7th October 2013 then you'll be asked to make a claim for PIP.

If your award is due to end or reviewed on or after 7th October 2013 and you've not already received a renewal letter about your DLA then you will be asked to make a claim for PIP.

Everyone else on DLA will not be contacted till 2015 or later. Unless you report a change.
 
Young People   

If the young person turns 16 before 7th October 2013 they continue to claim DLA but will have to swap to PIP sometime in the next few years.

If the young person is due to turn 16 on or after 7th October they then need to decide if they wish to claim PIP.

If you are 65 or over

If you are 65 or over on or before 8th April 2013 you do not need to claim PIP. You will continue to get DLA as long as your circumstances do not change.

If you reach 65 after 8th April 2013 then you will not be contacted till 2015 or later.

I have cut it down and taken the waffle out but basically that is what they said. So my Autistic son who had an indefinite award will now need to migrate to PIP. Good job the DWP and myself agreed he was not ready to take over his own affairs yet as he would totally freak out about all of this and more forms and medical checks.

I feel like there is a black cloud hanging over me. I am so scared of the next thing through the door. We are ill and barely able to do the basics without the threat of the WCA and DLA to PIP nonsense.
What do you all think?

xxxJoolsxxx         

*I have been told that this isn't news and people have been discussing it for over a year. I blame the Brainfog as I was under the assumption it was all on hold until 2015 my mistake sorry :0(

Sunday, 10 February 2013

Water and Horses!




Just a few things playing on my mind tonight so I thought if I wrote them down and got them out of my head I may sleep hmmmmmm.



The other day the news was on and they were saying that water bills are going up. The newsreader was talking to some suit about why when they had such astronomical profits. He explained that work needed to be done and they had people who invest money and need a return. Ok so far, then the newsreader says but why are you making the public pay for this, His response just like a good politician was to dodge the question and say that they were up grading the system and didn't want to make the public pay for the entire thing so they have investors blah de blah blah.



Correct me if I am wrong but the way I understood business was this. You have a company you trade, you make a profit, you plow that back into the business. The newsreader pointed out the amount of profit they have yet they still want to make us pay??
Of course there is no way you can change providers for a better deal so they can do what the hell they like. I wonder how other businesses would fare if they were to hike their prices up and keep all the profit?


Moving on to the topic of the day which is the horse meat in so called beef products in the supermarkets. Oh don't worry they say (as they would as they don't give a shit as they don't have to eat it, but the POOR do yet another kick in the knackers for us all) it isn't a health hazard. No worries it won't make you sick, aren't they missing something.............IT'S A BLOODY HORSE!!! I don't want to eat horse thank you or dog or rat, I don't care if it can't do me harm it is still a BLOODY HORSE!!


Makes you wonder what else they are not telling us...........


Now I'll never sleep


XxxJoolsxxx :0)

Monday, 4 February 2013

Philip Schofield I am talking to you...........

 
 
Lost another day this week, thanks CFS!! Slept all of Sunday until madam had another bout of sickness around 12am. Thankfully after a strepsil eased her throat she dropped off again.
 
 
Due to the long on/off sleep I woke in the daytime for a change yaaaay. No beginning to wish I had slept longer after I watched Philip Schofield's rant about the "FAT" who should just get up and get out to work.
I am so sick of the disabled, sick and poor being the main "news" stories these days, and rich and healthy TV presenters spitting forth rubbish about a life they have no understanding of. Yes Philip I am looking at you.
 
 
That so called news headline was there to create a reaction and boy did it do that. Do you honestly think people get signed off work just because they are fat?? Don't be so naive, there is a myriad of reasons why people are unfit for work and I can almost guarantee you that the "fat" people who are signed off are because they are chronically ill not just fat.
 
 
How about doing a bit of investigative journalism and finding out why these people are the way they are. You will find with a majority of people with an eating disorder a back story of sexual or physical abuse which led to the over eating. It is not just greed as you and Paul Ross seem to think at all.
 
Oh they should just get up and go to work, do you tell blind people to just look? Do you tell deaf people to just listen? NO because there is a reason they are the way they are which is the same with the majority of fat people.
 
 
Another point I would like to raise is the cost of food. I am sure you and Paul never give it a second thought, and are provided with wonderful healthy food to eat everyday. Try doing a weekly shop in the local supermarket on job seekers allowance and see what it buys you! The things you can afford to buy are all the things on offer and buy one get one free. Now look at what food exactly is on offer...........burgers, crisps, ice cream etc. Do you see fresh meat and veg on sale NO which is why poor people eat crap food it is all they can afford.
 
 
I am chronically ill and on medication that makes me gain weight. I am not disabled because I am fat, I have become fat because I am disabled. Why don't you try to think before you speak next time, or better yet live a month on jobseekers allowance and budget for a family of 4 and see how well you eat, that is if you can eat at all after paying out for everything else first!
 
 
You are lucky you have your health and a great career, be thankful for what you have and try not to sneer at those who were unlucky to be born in to a poor household and are doing the best that they can. Or those who have had accidents at work, or who have become ill through no fault of their own. It could have been you!

Tuesday, 29 January 2013

All I want is to be left alone is that too much to ask for?



Had to cancel my nurse appointment again!! Didn't get to sleep till 6am and then when hubby woke me at 9 my head felt like it was going to explode and every part of my body was in agony. Went back to sleep and didn't wake again until 11pm!!!



So now of course it is 4am and I am still wide awake with the head from hell and know it will be hours before I sleep again. I am so sick of my body clock being the wrong way round. I have tried making myself stay up all the way round but the pain is immense and then I get a second wind round 9pm and am up all night again!! Anyone got any bright ideas? My Doc says no to anything I ask for so sleeping tablets are out of the question. I have tried hot drinks and showers and hot water bottles. Sleep masks, lavender sprays etc etc.



In the wee small hours when I can't sleep and my brain is whirring I have been helping the fight for the disabled. I tweet and Facebook about the wow petition and anything else I can to help. Last night though I suddenly thought what is the point?



I have realised that I may as well be trying to make the tone deaf sing as get healthy people to back a campaign for the disabled. 1 there is all the shite the government and media print about us being feckless scroungers who are all fit for work but choose a life on benefit while they are working we are sleeping yadda yadda. 2. That the truly NEEDY are being looked after and only the liars will lose benefit. But the main stumbling block is the fact that they are healthy.



There is no point in me wasting what little energy I have and getting stressed about what is happening and trying to convince people what is really happening because they don't care! I'M ALL RIGHT JACK. They have no understanding of our life and don't want to understand. They are working hard and getting screwed and as much as they would like to be compassionate they can't muster up the enthusiasm as their life is crap too.



Someone posted on Facebook how they would like to have nights out more, and I nearly posted wow haven't had a night out in 12 years but then I am not supposed to am I. I am disabled and on benefit I am not allowed to go out or eat nice food or watch TV. I should be in the work house eating gruel! I hate this life with everyone judging me. I would gladly swap my disabilities with anyone for one week just to see how quickly they hand them back.



All I want is to be left alone is that too much to ask for?