tag:blogger.com,1999:blog-79825691918906718592024-03-05T08:01:32.681+00:00You dont look sick!A blog about my life, passions and concerns..I started it thinking it would only be about Fibromyalgia and living with it.
It still is the main topic, but i find I want to talk anything and everytihng that makes me want to type..I hope you find something of interest.
Enjoy
Fibrorgirl xUnknownnoreply@blogger.comBlogger51125tag:blogger.com,1999:blog-7982569191890671859.post-51595080256909359182015-03-11T14:58:00.001+00:002015-03-11T14:58:33.447+00:00Long overdue update hello worldIts been absolutely ages...made a wee vlog as no spoons to type
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7982569191890671859.post-90277430069733647492014-02-28T09:01:00.003+00:002014-02-28T09:01:49.173+00:00Womans Hour Power List - Dr Sarah Campbell #WHGamechanger
Chuffed to bits I must say
The Radio Four Womans hour Power list is being compiled again, this year with a difference, instead of a list full of Mp's, the Queen and Journalists they want "Game changers" women from twitter campaigners to women in thier communties that have bought about some kind of change.
I am very proud to have been part of the Spartacus campaign, most people would Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-21970053427680440222014-02-25T10:19:00.001+00:002014-02-27T11:09:44.095+00:00Why? #justiceforLB - Updated
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<![endif]-->Connor Sparrowhawk was 18 - He had Epilepsy, was learning disabled and died in an NHS Unit on July 4th 2013 - I have followed his mums fight for justice for him and to get the truth known about how a fit and healthy young many could drown in a bath.
I didn’t know LB – but you only have Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-78198704003060680202014-02-13T12:27:00.001+00:002014-02-13T12:31:39.096+00:00#Fibromyalgia & #M.E A Call to Action Update
A Lot can happen in 24 hours
Yesterday I wrote an angry scared post about the possibility that the World Health Organisation (WHO)
might reclassify both Fibromyalgia and M.E as psychological and behavioural disorders.
Events moved fast, I tweeted my outrage, it got retweeted lots of people asked WHO if it was true, they said NO its not they had no plans to change the classifications. I learntUnknownnoreply@blogger.com4tag:blogger.com,1999:blog-7982569191890671859.post-47670649572328814482014-02-12T12:41:00.003+00:002014-02-12T17:28:26.192+00:00A Call To Action #Fibromyalgia #M.E
I often meander along with this blog, writing what ever makes me want to tap the keys. Today I read something that made me both angry and terrified in equal measure.
NB: I have removed the link to the article that sparked this post - as it is now showing up as page not found. I dont know why. Despite this the blog stands - I have thought for a long time that its time to get both illnesses Unknownnoreply@blogger.com17tag:blogger.com,1999:blog-7982569191890671859.post-4677427930360018702014-02-11T11:35:00.001+00:002014-02-11T11:35:47.740+00:00Dont sweat the small stuff #Stresswaking up ferling like you have the worse "flu" ever, your body aches everywhere and you feel drained of energy. Add in a whole host of neurological symptoms from numb fingers to blurred eye sight, you can imagine just how horrid it feels when you have in spoonie terms hit the wall.
That was me yesterday, my bodies reaction to stress. what could be so stressful in my life that bought this Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-10434681054546212862013-12-07T10:07:00.001+00:002014-01-09T13:55:21.301+00:00Seasonal Affective Disorder and Me
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Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7982569191890671859.post-66557339550641911782013-11-18T12:27:00.002+00:002014-01-09T14:07:16.671+00:00Unitended Policy Consequences #DWP #ESA
Lets face it, the DWP have made some dumb ass decisions of late and have more unintended policy consequences than I've had hot dinners. The latest is a corker and the only people benefiting from it I expect will be payday lenders.
If you were on sickness benefits and managed to get back to work, you could get £40 a week for 52 weeks as a little sweetener and it would help tide you over til Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7982569191890671859.post-68302348735905599462013-10-26T01:06:00.003+01:002014-01-09T14:42:55.533+00:00Flare up plan #fibromyalgia #spoonie
Its cold, damp and the clocks are about to go back. That means only one thing, I need to get my head into winter mode and allow myself longer to recoup energy and try to make sure what little i have is used for things i want to do and not wasted.
I have no amazing tips or wisdom, its really down to planning ahead a little.
Some givens:
-I will have a flare up.
-I will spend more time either Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7982569191890671859.post-40681645328715324952013-10-23T23:26:00.000+01:002014-01-09T14:52:08.063+00:00Conversation with a #spoonie Vlog
I've had a rough day and I know I've been skating on thin ice again. When you have Fibro it's like dancing the tango with a shadow on a knife edge; there is always the danger you will over step and fall off. I'm not sure I know anyone with it that doesn't sometimes slip up. The trick I've finally learned is to STOP!! when you get all the warning signs, pushing on can only lead in one direction; Anonymoushttp://www.blogger.com/profile/01994359889427115663noreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-46547527691819480332013-10-12T13:54:00.002+01:002014-01-22T23:00:08.141+00:00Looked after but not cared about #SocialCare
I've tried, God knows I've tried to truly express my distress, anxiety and shame at needing care and accepting that I needed it. I shouldn't feel shame or guilt, surely it's just a case of accepting I need some extra help, but I do feel it - right to my bones.
I feel ashamed about what others think of me, after all I look well don't I. Ashamed I reached a point where the simple task of trying Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-56048423230985213522013-09-20T13:36:00.001+01:002014-01-22T23:33:37.558+00:00Im off to the Tory Conference please share your #CareStories #CareIdeas
Finally I have some time to write this - it's been a busy few months.
I am off to the Tory conference next week as part of the Leonard Cheshire Access all Areas scheme. Putting personal political feeling aside I'm both excited to go away, I love adventures and new experiences, and full of trepidation as I know I will be exhausted and it won't be easy changing minds or even opening them up.
I Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-89978633597029929322013-09-03T20:18:00.002+01:002014-01-23T22:20:09.488+00:00My "virtual" memory keepsake box
As summer turns to autumn, so does the time when spoons are low, adventures are rare, and spoons are counted in hours or even minutes. It's hard to hang on and think I will get through this and be well enough again to have a few adventures.
This isn't maudlin, it's a simple reality of life as a spoonie - its almost four years in now and while still unpredictable in nature - I have a slightly Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-21463797977888962712013-08-28T16:00:00.001+01:002014-01-28T16:55:16.385+00:005 different Care workers on 5 different visits #Dignity
Imagine this, you open the door to a complete stranger, they say hello. Slightly bashful and coy, you invite them upstairs, explaining just how you like it as you go, slowly peeling off your pj's, the ones with the coffee stain and some unidentified yellow substance that might be vom. You look away coyly as they go to help you, brushing your skin with their rubber gloved hands..
Stuttering, youUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-8562441271782631152013-08-17T11:17:00.001+01:002013-08-17T11:25:25.467+01:00Good Social Care - Makes the difference
I have been a little absent over the last few months, in part it was heeding the red flags of depression but more recently it was having the chance to get out and live a little.
A few things came together at once for me, all positive and while im typing this at 7.45am - feeling like death warmed up, half dreading the thought of heading into London to attend a training session for an exciting Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7982569191890671859.post-84013407427969634852013-07-23T10:36:00.000+01:002013-07-23T12:46:56.608+01:00ATOS convenient Fall guys for the DWP
For those who read my blog but don't know what a WCA is - its a work capability asessment, something carried out to assess a sick and disabled persons ability to function in a "work situation" it is a flawed test that has no resemblance to a real world situation at all.
The WCA is carried out by a private contractor called ATOS that in many ways quite rightly has come in for stick - as many ofUnknownnoreply@blogger.com4tag:blogger.com,1999:blog-7982569191890671859.post-8547611681430993132013-06-13T16:28:00.001+01:002013-06-13T16:33:13.567+01:00Depression: Heeding the red flags..
I haven't blogged personally for a while,
In part because I have been doing a lot, and this has inevitably caused a bit of a crash - mentally more than physically. I always know when I feeling a little under pressure, or when I'm not coping with things when i start to take lots of things personally, or I get very emotional about stuff. The final red flag for me is when my eating gets out of Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7982569191890671859.post-79072689686341442832013-05-19T09:52:00.001+01:002013-05-19T10:10:14.863+01:00Ringing in my ears...Tinatus & Fibromyalgia
A little known symptom of Fibromyalgia is Tinatus (ringing in your ears) Ive had tinatus for close to 20 years from mild backlground noise to distracting and in my face!
So why am I calling it a symptom if I already had it, simply because its got worse and more persistent since I got Fibro. In my experience Fibro amplifies other pre-exisisting conditions if you have any.
We know that asUnknownnoreply@blogger.com4tag:blogger.com,1999:blog-7982569191890671859.post-23421292044027932752013-05-12T12:17:00.001+01:002013-05-20T17:58:22.425+01:00Treating symptoms wont find a cure:: Fibromyalgia, M.E, Chronic Fatigue Awreness Day
Its international Fibromyalgia, ME, Chronic Fatigue awareness day today.
I have a primary diagnosis of fibromyaglia as many of you will know who read my blog, I also suspect I have M.E, as I fall somewhere between the two descriptions. It doesn't really matter as the list of symptoms I deal with daily are quite bad enough, thank you! I'm going to list them, not because I particularly enjoy Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-7982569191890671859.post-91047404943419738102013-05-01T01:37:00.000+01:002013-05-01T23:45:15.548+01:00Are we really Undateable? #BADD13
This isn't the blog i intended to write today for the annual Blogging Against Disablism Day BADD13 I was umming and ahhhing about what to wirte - I wanted to focus on why disabled people are "locked out of society"
Still undecided, I was sent a link to some feedback about a blog - When Lovers and carers Collide I'd written a few months ago about - and when your lover is your carer. Ther lady Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-7982569191890671859.post-40508546955898968272013-04-25T09:32:00.001+01:002013-04-25T09:34:51.420+01:00Minding my language: Mindfulness
My week so far....
Its been so busy, I've used up loads of spoons, absolutely shattered and while its been good, not sure i paced very well. Will I ever learn this pacing malarkey? I really should have cancelled a few things.
The above is how I would have written up my week so far if two conversations and one blog post hadn't happened. I had talked to LM recently that i was aware that Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-74250281358046029012013-04-23T09:20:00.004+01:002013-04-23T09:24:23.456+01:00Springing into spoon deficit
Every year I promise myself it will be different, I wont get the first rush of spring energy and blow all my spoons in one go..and every year i forget my wishful thinking and dive headlong into things then desperately back peddle as i realise that:
1. I do not have the spoons
2. Pacing is not a dirty word
3. LM does often talk sense & I should listen to him
Why do it - I convince myself Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-28035675193951696572013-02-04T09:55:00.002+00:002013-02-04T09:55:48.053+00:00Excuse Me....
I was always taught manners cost nothing, equally I would never dream of pushing in front of someone when out doing my food shopping. Id at least say excuse me can i get to that bottle of ketchup.
I notice people are often preoccupied when shopping, they are so focused on their task they simply don't consider the polite convention of manners. I'm struck that perhaps its a symptom of some of theUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-865007580069061772013-01-20T01:19:00.003+00:002013-01-20T01:19:43.842+00:00The Thrifty Kitchen in born
The Thrifty Kitchen is born..
I have been meaning to create a spoonie food blog for ages, I have so many recipes and ideas yet im lax..heck i not good at updating this one..but decided 2013 would be the year i did more of what i love..
talking, writing and passing on my passion for food and baking is one of them so rather than clutter up this blog, i thought it best to have a dedicated space Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7982569191890671859.post-2227010975009369522012-12-17T12:07:00.000+00:002012-12-20T14:16:17.829+00:00Act Now - to fight for your independence
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