tag:blogger.com,1999:blog-47074858490411431512024-03-13T17:58:36.994+00:00Chronically ClaireChronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-4707485849041143151.post-14221270240962358302012-02-06T16:35:00.002+00:002012-02-06T16:35:31.549+00:00An informal CV<div class="MsoNormal">An informal CV</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">My name is Claire Smith and I love to learn, and love to share it with others too. What I am looking for is for someone to invest in me, to nurture and direct my talents. If I can be taught something new, I will be up for it. If I can be involved in cool projects and have a go at working solo, I will be up for that too. I get told all the time I am approachable, and I see this when I talk to new people. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I have a wish that I can teach others so that they can share in my enthusiasm for scientific topics. I do it now to a degree; I am STEM Ambassador and will find ways of keeping technical topics fun and interesting for anyone who will listen, I explained special relativity to my <st1:place w:st="on">Nan</st1:place> once, with the aid of pictures on an envelope and balled up gloves. </div><div class="MsoNormal">My body is fragile, and I only really work at a proper pace between 12pm and 4pm most days (I have a certain amount of energy to use each day and can horde it for a longer day). </div><div class="MsoNormal">Before 2006 I was working four different types of youth work and play work jobs and had a decent social life too, now that I can not do this amount of work, I now know that it is more important to create quality work.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I am still learning how to use my body, to get the most out of it; it’s like a new life that still has L-plates on it!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I love doing my Open University degree, no lectures at nine in the morning and using energy I have on work instead of getting dressed suites me fine, but there is something missing from all of this. </div><div class="MsoNormal">I don’t get to talk about the subjects with other students over coffee, I don’t get to speak to professors about their latest books, I think this means I don’t get to take part in life as it goes on.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">My social life in <st1:place w:st="on"><st1:city w:st="on">Manchester</st1:city></st1:place> is pretty good, besides my small group of friends, I have taken part in Greater Manchester Skeptics events, and I once delivered a small soapbox rant on the “cure alls for fibromyalgia”. I have volunteered for Manchester Girl Geeks, and will probably do it again soon. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I want to continue with my degree, quantum physics and its branches fascinate me and I study mostly out of joy for the subject. I want to continue to volunteer but I really want some paid work, I want to contribute but worry with my lack of work experience in this current climate will mean I will have no chance of getting work, (I hate seeing my sister working in a call centre, they’re hell, I know, when she should be starting her career after graduating) that the words “reasonable adjustments” will send employers running of the other direction. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The best thing about me, if I do say so myself, is that my health is improving year after year as I get a handle on my body. This means that with long term employment, a supportive environment and plenty of understanding an employer will get an amazing, hard working, always improving Claire.</div>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-1514811902590676542011-02-28T16:26:00.002+00:002011-02-28T16:27:58.945+00:00Skeptical about cure-alls<div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">OK so here is what I have ran into and what people have sent me, sites that claim to cure all, that claim to lower you pain, free you from fatigue and financially bankrupt you, that usually are just people on a power trip, people who are misguided, people who are just plain greedy.</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">http://www.fibrofix.com/ is a favourite:</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">http://www.facebook.com/topic.php?uid=50735111668&topic=19565</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">Anne Hillebrand</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">FIBROMYALGIA'S *MEDICAL MAVERICK</span></div><span style="font-size: large;"><br />
</span><br />
<div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">*is not a medical professional but a former sales rep</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">It is wonderfully ironic that Anne has a buyer beware section in which she claims</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">Frequent use of bold lettering and all caps.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: large;"><a href="http://4.bp.blogspot.com/_HnA04607Jp0/THaT9I5TVvI/AAAAAAAAAF8/lL-rqfZOPlU/s1600/fibrofix.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/_HnA04607Jp0/THaT9I5TVvI/AAAAAAAAAF8/lL-rqfZOPlU/s320/fibrofix.jpg" /></a></span></div><span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;"><br />
</span><br />
<div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><i>"A lot of text with many of the words in red and/or highlighted in bright yellow.</i></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><i><br />
</i></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><i>Empathetic language showing how they understand what you’re going through and how much you are suffering.</i></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><i><br />
</i></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><i>Lots of personal stories and testimonials from people whose lives have been changed by using this product.</i></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><i><br />
</i></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><i>References made to research proving their claims, but no links provided to the actual research." </i></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">Which all point to her site! (See picture) </span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">NEXT ONE: I ran into www.foodsforfibromyalgia.com </span><span style="font-size: large;">natural</span><span style="font-size: large;"> solutions to stop pain & fatigue...the disclaimer says it all:</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"> <u><i>The information on this website has not been evaluated by the FDA and is not intended to treat, diagnose, cure or prevent any disease. This information is not intended as a substitute for the advice or medical care of a qualified health care professional and you should seek the advice of your health care professional before undertaking any dietary or lifestyle changes. The material provided on this website is for educational purposes only. </i></u></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"><br />
</span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;">So please be aware when searching for help with your fibromyalgia. The best page on help is the UK page: <a href="http://www.fibroaction.org/Pages/About-Fibro.aspx">fibroaction</a> & <a href="http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Introduction.aspx">NHS Conditions Fibromyalgia</a></span></div><div style="font-family: Times,"Times New Roman",serif;"><span style="font-size: large;"> </span> </div>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com6tag:blogger.com,1999:blog-4707485849041143151.post-78263994932340395792010-10-11T15:50:00.000+01:002010-10-11T15:50:23.834+01:00How roller coasters and llamaless people really can help you remain the fabulous babe or dude that you are.<div style="font-style: normal; margin-bottom: 0cm;"><u><b>How roller coasters and llamaless people really can help you remain the fabulous babe or dude that you are.</b></u></div><div style="margin-bottom: 0cm;"><br />
</div><div style="margin-bottom: 0cm;">Our lives are naturally be full of ups and down, the roller coaster a perfect analogy. Perfect in that the people who can ride have those ups and downs. </div><div style="margin-bottom: 0cm;"><br />
</div><div style="margin-bottom: 0cm;">You head over to have a ride on the roller coaster, it's called "The Ride of Your Life", you are excited to see what heights it can reach and thrills it can give you. You queue for ages, only to realise you aren't "this tall to ride". There are always going to be those of us who can't ride for heart conditions, pregnancy, back problems etc. It's not just you who gets turned away you notice, so you don't feel as bad as you would if you were the only one, while you think everyone else is having fun.</div><div style="margin-bottom: 0cm;"><br />
</div><div style="margin-bottom: 0cm;">So disappointed you walk away, but while the world and his wife queue for the "Ride of Your Life"</div><div style="margin-bottom: 0cm;">The line for the tea cups, the shooting galleries, the haunted house are all freed up, and you are "just right" to have your own thrills there. When you've had your fun, there is a little park area with ducks and a bench. You find your friends and share similar stories of the rides you've taken and the rejoice in the differences you've experienced. You are glad you are old enough to not throw a tantrum, once upon a time you'd have wailed and moaned "if I can't go on the Ride of Your Life then I'm going home!"</div><div style="margin-bottom: 0cm;">The next day you skip the rides and head to the park to take in nature and peace. You spot your friends and ask "what's happened, why aren't you on the Ride of Your Life?"</div><br />
<div style="margin-bottom: 0cm;">They reply, "Because it wasn't as fun as we thought it'd be. We'd like to take a break and spend some time with you, even have a ride on the tea cups before the fair leaves town"</div><div style="margin-bottom: 0cm;">So what I am trying to say babes and dudes, is that although you may feel you don't fit in a "normal" world, there will always be other opportunities open to you, and you can even make those opportunities yourself.</div><div style="margin-bottom: 0cm;">It's not even about compromise, some may see it as having less of a life, you should see it as having a different one, and we all have different lives to one another. </div><div style="margin-bottom: 0cm;"><br />
</div><div style="margin-bottom: 0cm;">A phrase I hear too often is "at least you are better off than.... Llamaless, Lipless, Legless, Larry-no-legs with a loofer" well maybe not <i>that </i><span style="font-style: normal;">phrase entirely but you catch my drift!</span></div><div style="margin-bottom: 0cm;">We shouldn't have to feel grateful because someone else is much worse off, we should be able to say, "You know, I think I may go lend a leg to Larry while lends me his loofer!"</div><div style="margin-bottom: 0cm;"><i><b>Make your opportunities, rediscover your abilities and celebrate the difference in you life.</b></i></div><div style="margin-bottom: 0cm;">Claire Smith</div><div style="margin-bottom: 0cm;"><b><br />
</b></div>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-37271479032251820152010-09-23T13:36:00.000+01:002010-09-23T13:36:56.300+01:0030 things<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" LatentStyleCount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><img src="http://www.blogger.comhttp://img2.blogblog.com/img/video_object.png" style="background-color: #b2b2b2; " class="BLOGGER-object-element tr_noresize tr_placeholder" id="ieooui" data-original-id="ieooui" /> <style>
st1\:*{behavior:url(#ieooui) }
</style> <![endif]--><!--[if gte mso 10]> <style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-parent:"";
mso-padding-alt:0cm 5.4pt 0cm 5.4pt;
mso-para-margin:0cm;
mso-para-margin-bottom:.0001pt;
mso-pagination:widow-orphan;
font-size:10.0pt;
font-family:"Times New Roman";
mso-ansi-language:#0400;
mso-fareast-language:#0400;
mso-bidi-language:#0400;}
</style> <![endif]--> <br />
<h3 style="font-family: "Courier New",Courier,monospace; font-weight: normal;">30 Things You May Not Know</h3><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">1. The illnesses I live with are:</span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><span style="font-family: "Book Antiqua";"><span> </span><i>Fibromyalgia, Joint Hypermobility, Asthma, Depression & Anxiety</i></span></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"></span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">2. I was diagnosed with it in the year:</span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"><span> </span>Fibromyalgia 2008</span></i></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"></span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">3. But I had symptoms since:</span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Some since birth, some since my teens.</span></i></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"></span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">4. The biggest adjustment I’ve had to make is: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Having to rely on other people, & government systems that are as unreliable as myself.</span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">5. Most people assume: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">That I am too young to be disabled.</span></i></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"></span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">6. The hardest part about mornings are</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">:</span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"><span> </span>Having to get up because I am in too much pain to lie there, when I am very fatigued.</span></i></span><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";"> </span></b></span><span class="apple-style-span"><span style="font-family: "Book Antiqua";"></span></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">7. My favourite medical TV show is</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">: </span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Helicopter Heroes count, I like the real ones!</span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">8. A gadget I couldn’t live without is: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">My laptop. Social life & Uni work would be none existent without it!</span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">9. The hardest part about nights are: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Getting to sleep or going out cold before I can take my meds, or brush my teeth.</span></i><b><br />
</b></span><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">10. What do you take?</span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";"><span> </span></span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">17 tablets a day, 2 inhalers.</span></i></span><b><span style="font-family: "Book Antiqua";"></span></b></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">11. Regarding alternative treatments</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">: It is called alternative for a reason, it is an alternative to rigorously tested, safe, reliable treatments...</span></i></span><span style="font-family: "Book Antiqua";"></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">12. If I had to choose between an invisible illness or visible I would choose: </span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">I live with both, invisible means that people treat you as though you can do anything, and visible, they treat you like you can't!</span></i></span><span style="font-family: "Book Antiqua";"></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">13. Regarding working and career: </span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">I have neither, but I use what skills & energy I have to help others I am working on getting a degree in physics, so I can play with particle accelerators!</span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">14. People would be surprised to know</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">: How much pain, physically & emotionally I am in everyday.</span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">15. The hardest thing to accept about my new reality has been: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Realising my limitations, I am still new to a lot of this, I am still young & want to do things, a lot of them I just can't.</span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">16. Something I never thought I could do with my illness that I did was: </span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Have a social life: I love my sceptic meets & geek nights & improv</span></i></span><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">.</span></b></span><span style="font-family: "Book Antiqua";"></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">17. The commercials about my illness</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">: </span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">In the UK there are none. But I am glad that no one is trying to sell me anything for it. I trust my doctors.</span></i></span><span style="font-family: "Book Antiqua";"></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">18. Something I really miss doing since I was diagnosed is: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Seeing my family & youth work.</span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">19. It was really hard to have to give up: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">regular sex, beer & my savings!</span></i></span><span style="font-family: "Book Antiqua";"></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">20. A new hobby I have taken up since my diagnosis is</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">:</span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"><span> </span>I read so much more now!</span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">21. If I could have one day of feeling normal again I would</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">:</span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";"><span> </span>I would get up early, go earn some money, go for a run or swim, rock Oli's world, have a beer & spend all night dancing! (as long as I didn't have to pay for some of it in the morning!)</span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">22. My illness has taught me</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">: </span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">To respect myself & other people. </span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">23. Want to know a secret? One thing people say that gets under my skin is: </span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">You are too young to be disabled! </span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">24. But I love it when people</span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">: </span></i></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Come over to see me, take me out for lunch, don't need me to explain that I can't do certain things & make me laugh my socks off! (This is for my family, my best friends & kind random strangers)</span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">25. My favourite motto, scripture, quote that gets me through tough times is: </span></b></span><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Carpe Diem! Corny but it gets me through.</span></i></span><span style="font-family: "Book Antiqua";"></span></div><div class="MsoNormal"><b><span style="font-family: "Book Antiqua";">26. When someone is diagnosed I’d like to tell them: </span></b></div><div class="MsoNormal"><i><span style="font-family: "Book Antiqua";">Don't be afraid to ask for help, to tell people what you need & don't need, to have a bad day. The everyday stuff shouldn't be a chore</span></i></div><div class="MsoNormal"><b><span style="font-family: "Book Antiqua";">27. Something that has surprised me about living with an illness is:</span></b></div><div class="MsoNormal"><b><span style="font-family: "Book Antiqua";"><span> </span></span></b><i><span style="font-family: "Book Antiqua";">That actions speak louder than words. (*Is cleaning/cooking for you* is better than "I am always there for you")</span></i><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">28. The nicest thing someone did for me when I wasn’t feeling well was: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">Oli has done so many things, I always consider them the nicest, because he works the hardest.</span></i></span><span style="font-family: "Book Antiqua";"></span></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">29. I’m involved with </span></b></span><b><span style="font-family: "Book Antiqua";"><a href="http://www.invisibleillnessweek.com/" title="Invisible Illness Week"><span class="apple-style-span"><span style="color: windowtext; text-decoration: none;">Invisible Illness Week</span></span></a><span class="apple-style-span"> because: </span></span></b></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">I was visibly vocal about being disabled! </span></i></span><i><span style="font-family: "Book Antiqua";"></span></i></div><div class="MsoNormal"><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";">30. The fact that you read this list makes me feel: </span></b></span></div><div class="MsoNormal"><span class="apple-style-span"><i><span style="font-family: "Book Antiqua";">That you may have a longer concentration span than me! I hope you enjoyed it, your prize is a sweet....knowledge that you know more about what I, & other disabled people go through daily!</span></i></span><span class="apple-style-span"><b><span style="font-family: "Book Antiqua";"></span></b></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-85736842458659094162010-09-16T19:57:00.003+01:002010-09-23T13:37:29.125+01:00I am not a Nazi, I am just a Clairepie Smeff!I am not a Nazi! To my family and friends who believe in Gods & the supernatural: I would never want to see any harm come to you & yours, regardless of what you believe in. It's not how human beings should treat one another. I donate to charities & volunteered in the past. Remember when I have helped you out, I have done it because I consider you as equal a human being as I do myself. That you, regardless of what you believe, deserve love, good health, respect and human rights. I am sorry that the Catholic Pope has got it wrong about atheists & humanists, I hope this doesn't cause any bad feelings between us. Please know he is wrong because he has judged us all, when he doesn't know us all. Your atheist & humanist supporting friend, relative & fellow human being Claire x<br />
<br />
http://www.bbc.co.uk/news/uk-11332515Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-26068554018589458952010-09-10T12:10:00.001+01:002010-09-10T15:24:00.044+01:00Paul Dirac doodle 2<div xmlns="http://www.w3.org/1999/xhtml"><a href="http://1.bp.blogspot.com/_nPBuMK__Fd8/TIoSHCMctRI/AAAAAAAAAAM/-7vayRds_kk/s1600/image-upload-43-718582.jpg"><img src="http://3.bp.blogspot.com/_HnA04607Jp0/TIo_fiHUEFI/AAAAAAAAAGY/WyFjCkb3H98/s320/image-upload-43-718582.jpg"/></a><br /><span>Just a quick and out of focus doodle of Paul Dirac, if I find a way of drawing him better I'll send him on adventures with my fave steampunk astrogirl. Who is a secret atm! But I've got picks of her drawn up.</span><br /></div>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-91873974381927154722010-08-05T21:37:00.004+01:002010-08-05T21:54:48.836+01:00Just a little resolveIt would be OK if everyday was normal,<br />
Where independence was a natural occurrence,<br />
Where people walk alone<br />
& shop in the market<br />
Without a need for another clinging to their pocket.<br />
<br />
There are things so lost of healthy people<br />
Like the freedom of choice & time<br />
The freeness of dancing alone in a club,<br />
To the freedom making words to rhyme<br />
<br />
<b>The reality:</b><br />
<br />
Wanting to go & fix some caffeine <br />
From a real coffee shop, from a real bean<br />
Means waiting around until you can be wheeled,<br />
To your destination in the urban field<br />
<br />
For example, a trip to read books,<br />
Can be lost on the non-dexterous<br />
Or you need someone to look<br />
Or some to carry & hold, such a fuss.<br />
<br />
Off to the cinema<br />
Where life is at best, a fix f' hypoglycaemia<br />
Means a trip on the bus, did you get your right stop?<br />
Did you fall when it wobbled?<br />
Did you fit, did you flop?<br />
<br />
Having someone around to help you to the show<br />
Mean not getting lost or a sugar overdose<br />
Means someone to hold you when you body ticks<br />
Means someone to hold you when the bus kicks<br />
<br />
<br />
(The time you have to bust a move<br />
Becomes the time you have to bust your groove,<br />
But don't let this get your down, Claire<br />
You can sit & dance away in your chair.)<br />
<br />
<b>How to resolve:</b><br />
<br />
They are times when you feel alone,<br />
In the bad way when your pain has over grown.<br />
But there are others going through the same <br />
And enjoying your own company will keep you sane.<br />
<br />
Instead of walks alone, the sweet silver song<br />
Your carer, paid or otherwise, does not belong<br />
In your thoughts, they are all yours to sing<br />
Aloud and inside, & think your own thing.<br />
<br />
<br />
You don't have to say a word<br />
If you want the peace & quiet,<br />
Mumble your needs to them<br />
And no fuss or maddening riot.<br />
<br />
Dreams of flying can be real <br />
If you only stop and feel the breeze,<br />
If you can't make it out that day<br />
Open the window & breathe your cares away.<br />
<br />
Maybe stop & dictate a poem<br />
on your speech software & think, a-low-en.<br />
Please embrace your talents, for knitting<br />
Embrace the things that you can do sitting.<br />
<br />
Dream wild dreams of letting go<br />
& write/draw/read/sing & let it flow.<br />
This is the best way to find YOU in your ability<br />
Someone who helps you out is lessening your disability.<br />
<br />
So grab for independence<br />
It's OK if you need a hand,<br />
Solitude around people<br />
Can be found.<br />
<br />
*songs I was inspired by today <br />
R. Rogers/O. Hammerstein II - You'll Never Walk Alone<br />
Foo Fighters -ResolveChronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com2tag:blogger.com,1999:blog-4707485849041143151.post-61451731978675481092010-07-05T14:01:00.001+01:002010-09-10T13:57:48.518+01:00Clairepie's blog about getting disability living allowance taken off her.We'd been trying for months to get a home care company in, after people ignoring our calls we found <a href="http://www.chrysalishomecare.co.uk/">chrysalis homecare</a>, who where/are AWESOME. A few days after getting my health and safety visit from them my tribunal came up, and the idiots took it off me.<br />
<br />
It started in August 2009 when they lowered my care component because, as I didn't know at the time, the renewal form didn't have enough info on it. Instead of telling them again and again what I go through, I said nothing has changed in my condition...mistake number 1.<br />
<br />
2.My other mistake was not complaining enough to my doctors<br />
3. My other mistake was not realising that the tribunal would be so hard on me physically, mentally and emotionally/<br />
4. My other mistake was having a "good" day,at the tribunal meaning pain was lessened but brain was foggened!<br />
5. My other mistake was not getting a representative in for it. (I wanted Oli to be it, since he knew me and was a clever clogs)<br />
6. My other mistake was assuming that the tribunal would be nice people with a sense of humour.<br />
7. My other mistake was being myself, and not putting on my posh voice (My Scouse accent gave the game away that I was lying thieving scum. Scum, scum, scum.)<br />
<br />
Luckily Manchester Advice are there helping us out, we have a case, there were a few errors in law, so we are hoping to see "the guy" to help us out. <br />
<br />
So here I am with no home care, no healthy dinner, no regular exercise, no weight loss, muchos stress with a gall bladder removal coming up this month. <br />
<br />
As disabled people and their carers are suffering more and more heartache as money is cut, as it gets harder to live independently.<br />
<br />
I am still haunted by the story of a lady in America, who killed herself as she could not afford health care to treat her FMS.<br />
<br />
Will that be us in the future? Taking money out means taking people out of work, out of society, which damages reach to everyone of us, disabled or not. Taking away the money means taking away the rights of disabled people & their carers. <br />
<br />
I am here for the fight with what few spoons I have to offer. <br />
<br />
<br />
<br />
<br />
UPDATE:<br />
<br />
Gary the gallbladder is out & I am doing well now it is gone, almost time for me to get back to exercising! Got some awesome news today from Micheal at <a href="http://www.manchester.gov.uk/info/100001/benefits_and_council_tax/356/manchester_advice_free_and_confidential_advice/1">Manchester Advice</a>, my appeal is being looked at in the upper tribunal & it seems like I may just get my DLA back, enough to pay for home care to help me out *chair dance as left knee is Out Of Order!*<br />
<br />
<br />
<br />
Bad news if this happens though (<a href="http://wheresthebenefit.blogspot.com/2010/09/800000-claimants-face-losing-their.html">claiments face to lose benefits</a>), I know from personal experience of HAVING too live off benefits that sometimes Incapacity Benefit, or the similar part in the ESA, that it's all someone may have, after spending time contributing their national insurance this may be taken away....I am going to ask for mine back, so I can spend it on something to cheer me up, like a hit man, or something!<br />
http://www.fibroduck.com<br />
<a href="http://www.manchester.gov.uk/info/100001/benefits_and_council_tax/356/manchester_advice_free_and_confidential_advice/1"></a><br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/_HnA04607Jp0/TIoq9Xv5nFI/AAAAAAAAAGM/CIy2lMRhyrQ/s1600/duck+with+a+claire+on+her+bum.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;">They took out Gary, and surgically added Phoebe the Fibroduck</a></div><div class="separator" style="clear: both; text-align: center;"><img border="0" src="http://3.bp.blogspot.com/_HnA04607Jp0/TIoq9Xv5nFI/AAAAAAAAAGM/CIy2lMRhyrQ/s320/duck+with+a+claire+on+her+bum.jpg" /></div><br />
<a href="http://www.chrysalishomecare.co.uk/"></a>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1tag:blogger.com,1999:blog-4707485849041143151.post-73901959458902650072010-03-25T10:30:00.000+00:002010-03-25T11:22:22.305+00:003 mental monthsIt's been a mad mad few weeks. It started with the 28th of Jan, me & Oli went to Manchester Skeptics in the pub, the next day we where at a friend of a friends gig and I boogied for the first time in ages around my walking stick, the next day we where at a protest (http://www.1023.org.uk/the-1023-overdose-event.php) then I went to my improv workshop, then I went home and fell asleep on the couch! The Sunday was geekery, that night I asked Oli to marry me, the silly git said yes!!!<br />
In between study and geekery and impro and the gym I have been organising an engagement party and a wedding! A Steampunk wedding!<br />
<br />
So it's been pretty mental recently so I am really tired. I really want a break! Luckily I have my birthday coming up woohoo! But in between all this I am still fatigued and my mobility is limited and I am still in pain, I honestly don't know how I manage it....... can someone tell me?!Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1tag:blogger.com,1999:blog-4707485849041143151.post-14431993673441745462009-12-01T11:02:00.000+00:002009-12-01T11:02:17.912+00:00Quack Quack Punch<br />
<br />
</style> <br />
<blockquote><i>Dear Claire,<br />
Thank you for your e-mail. We at FMA UK always tell people that we don't recommend any treatments and point out that what might suit one person does not necessarily suit the next and anything that is expensive is to be thought about carefully. One of the problems we have is that occasionally people do find these things be they drugs, drinks, creams or therapies helpful. The best advice we can give is that there is no cure at present. I think from a legal point of view it would be very difficult to do anything about them en masse and we at present can only work on an individual basis as people ask us about these remedies.</i><br />
</blockquote>This is in response to an email I sent about fibrofix and it extends to the recent spate of twitter requests I get from alt therapists and cure merchants. I am a little annoyed at the FMAUK for not having the balls to do what Ben Goldacre does http://www.badscience.net/ or to bring the latest research and advice to the people like http://www.fibroaction.org/ does.<br />
<br />
<br />
<br />
<br />
<br />
<br />
The NHS look after me well, I have gotten back a lot of my life on the physical and mental support I am offered (from medication to CBT and hydrotherapy) I feel that these quacks are preying on vulnerable people (especially those in the USA) or people who's needs in the UK aren't met. FMS cannot be cured but it also cannot be helped by quick fixes.<br />
<br />
<br />
I am still fighting it daily and have for 3 years now, with meds, diet and exercise, it's hard and sometimes I lose the battles and it seems there is no hope.<br />
But there is, it has to come from you though, if you aren't happy with your dr's advice, let them know, if your FMS symptoms are too much, let them know. Keep at the stretches you got given by the physio last year, keep at the CBT techniques when you feel hopeless, keep asking questions and don't be afraid to ask them. That is what fighting is. <br />
Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1tag:blogger.com,1999:blog-4707485849041143151.post-24663786497400887842009-09-21T14:50:00.000+01:002009-09-21T14:50:13.752+01:00Studying, extensions and headachesI have been studying for a while now and really loving it. It has been hard but I am almost done with my science course and have a maths short course that finishes soon too. The hardest thing about it is that I am so delicate, anything can flare my FMS. <br />
I started on Gabapentin the end of July because it was cheaper the doctor said. I should have twigged, I am a lady with expensive tastes, no cheap jewels, no cheap foods and no cheap clothes ('cos they fit badly) and certainly no cheap meds.<br />
<br />
Studying is still a lot harder than it has been for a while, not becuase the work is harder but because I am weaker. <br />
<br />
It's not a word I like to use but it seems that being ill has really knocked me for six. <br />
<br />
So I am putting the study on hold after January, I don't want to but I have to. Maybe I will pick up another small course (Maths maybe, or a residential, even some sciencey voluntary work) but I want to be swimming 3 times a week and toning my body (because I have joint hypermobility too) plus getting back to some improv http://www.comedysportz.co.uk/regularWorkshops.html (sure Bron would appreciate the plug!) Because I have limited energy I can't have an active social life AND study.<br />
<br />
Part time life is something I am slowly coming round to, semi-retired at 22 isn't such a bad thing considering what I have acheived in the last 3 years, moving to a new city, new job (lost job!) and university level study maths and science and a long-term relationship AND a guinea pig. <br />
<br />
Thinks (that typo is for Laura B) are looking up, then down, then back up again with a general upwards trend! <br />
So for now, study hard until October when I have my science ECA due in, study-light until January (for my Maths course) Then my time is my own to get all fit and til September when I return to studying with renewed vigour.<br />
<br />
(All typos brought to you by my new laptop keyboard!)Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-72201458855066415922009-08-10T16:27:00.001+01:002009-08-10T16:34:02.112+01:00Small WorldWell, facebook is making the world shrink......... I would love to hear your stories of small world meetings. My own, for some strange reason link to one friend in particular! Out for my 21st, I met Jeff in the Krazyhouse in 2005, turns out he was Walton born and bread so we knew the same people, but did not know each other! Now a friend of his also knows my cousin..... massive coincidences and a very small world.... do you have better stories?Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com2tag:blogger.com,1999:blog-4707485849041143151.post-75615633405472146482009-07-16T12:55:00.000+01:002009-09-01T16:36:40.790+01:00Bisexual Atheist, I am so going to hell!Wow, so I am going to hell! <br /><br />If there are two things that get bad press it's atheism and bisexuality.<br /><br />I am going to compile a nice little list of media misrepresentations of atheism and bisexuality.<br /><br />Just to my lil readers know, <span style="font-weight:bold;">I am not a baby eating succubus</span>!<br /><br /><br />Ok so here we go, basic instinct...murderous, promiscuous bisexual.<br />Kate Veatch in dodgeball - slag, sorry having her cake and eating it bisexual (though I love the film!)<br /><br />ok that's just so far.....will edit laters! Please give my any more people you think should be included<br /><br />I found this link and was over joyed,so scroll down to the categories and find one you like http://tvtropes.org/pmwiki/pmwiki.php/Main.DepravedBisexual This website is addictive. and http://tvtropes.org/pmwiki/pmwiki.php/Main.HollywoodAtheist<br /><br />My sis says she does not understand bisexuals at all.... all I can say is.... it's all about the love. She has her type of woman, I have my type, other people have their type, they may not all be the same type, Blondes, fem, butch, post-op, gingers, Japanese, geek, pop-tart, metal-head, air-head whatever! Love is love and as long as people are loving and not hating, it's all that should matter.<br /><br />As for Atheism, I have asked Oli, that if I ever start believing he should have me committed, no conversion or seeing the light for me thanks.Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-30916887193883487762009-05-17T10:52:00.001+01:002009-05-17T10:54:44.168+01:00This is hysterical<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_HnA04607Jp0/Sg_e38IMzsI/AAAAAAAAAFY/dRSUaJdIF5M/s1600-h/teeheeheehee.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 95px;" src="http://1.bp.blogspot.com/_HnA04607Jp0/Sg_e38IMzsI/AAAAAAAAAFY/dRSUaJdIF5M/s400/teeheeheehee.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5336729136072019650" /></a><br /><br />*wees*Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1tag:blogger.com,1999:blog-4707485849041143151.post-11814718063073204922009-05-15T12:59:00.001+01:002009-05-15T13:10:01.331+01:00What's the point in raising awareness!?I have tried really hard this year to raise awareness, I have 126 "friends" on facebook, a handful on twitter. I asked who cared about FMS, emotionally blackmailing people into noticing upset me. Only 14 people anwsered to the question and the quiz, none of them family. So where am I going wrong? Is it because I am an average jo? Is it because I go on about it all the time? Is it because no one cares about sick people, or understands? Is it because it's not relavent to them?<br /> People prefer commenting on things they can identify with, and being ill or having FMS may not be one of those things. A "friend" asked me what FMS was......... how can a person who knows me, not know about fms? It upset me because I spend time asking "How are you?" How are your family?" To realise what's the point in having selfish people around who want you to reply to their commentry but will not care about replying to yours. <br /><br /><br />*sad Claire who needs a cookie*Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com5tag:blogger.com,1999:blog-4707485849041143151.post-33447186082408704162009-05-11T17:53:00.000+01:002009-05-11T17:59:25.181+01:00FMS Quiz 11-05-09<span style="font-weight:bold;">Fibromyalgia quiz<br /><br />1. What does the word fibromyalgia mean (fibro-my-algia)?<br /><br />2. How many fibromyalgia tender points are there?<br /><br />3. Name 5 (or as many as you can) symptoms of fibromyalgia (there are more than 5)<br /><br />4. Name 3 (or as many as you can) pre-existing conditions that can lead to fibromyalgia<br /><br />5. How many people may be affected with fibromyalgia in the UK? <br /><br />6. What sex is more likely to have fibromyalgia (extra point for getting the ratios)<br /><br />7. Name 5 (or as many as you can) physiological/anatomical differences between healthy people and people with fibromyalgia<br /><br />8. When is the UK fibromyalgia awareness week? <br /><br />9. Name 3 medications and 3 treatments that are used to help people with fibromyalgia.<br /><br />10. What can you do to support people with fibromyalgia? (The best ideas get a prize)<br /><br /></span><br /><br /><span style="font-style:italic;"><span style="font-weight:bold;">Did you get to the end? Unsure of anything? Then you can CHEAT! I don't mind, go look it up seriously ;)<span style="font-style:italic;"></span></span></span>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com5tag:blogger.com,1999:blog-4707485849041143151.post-48180036353246316962009-04-30T13:51:00.000+01:002009-04-30T13:57:34.415+01:00Bitten by the blog bug....here's another.I love my Dr's! A lot of people rant about how their doctors are pants.....I have been looking after myself pretty well with advice from the intertubes and also pop along to the Dr's. Their advice is SPOT ON everytime, they give me good advice and they refer me where needed (I have been refered for 2 lots of CBT, and now going to see ALFA http://www.manchester.nhs.uk/health/healthy_lifestyles/alfa.html) All of the Dr's there have been super stars....If you live near me ask if they are still taking on (which is think they are) <br /><br />This is there address and phone is here http://www.manchester.nhs.uk/local/map.aspx?area=19&services=2&service=88Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com3tag:blogger.com,1999:blog-4707485849041143151.post-41524386843793952412009-04-30T13:06:00.000+01:002009-05-01T11:37:59.626+01:00Parcel Force Forced Parcel Pain! Contains A Swear!Damn it, I sent a letter of complaint about this rude guy who saw I could barely stand up <span style="font-weight:bold;">(bad knees day) </span> then proceeded to hand me a parcel in my left hand <span style="font-weight:bold;">(weak)</span> which I dropped and swore <span style="font-weight:bold;">(motherfucker!)</span> Here's the letter anyway.<br /><br /><span style="font-style:italic;"><br />Hello, I have just had a package delivered (10.30am) and the delivery man was extremely thoughtless. He buzzed the flat repeatedly when I could not get there quick enough to answer him, I signed for it having to lean against the wall to do so as I use a walking stick in my right hand and also write with that hand. Then, after he watched me struggle because I could not support myself without my stick, he handed me the package (of 4+ books) in my left hand and promptly turned and left. I had to drop the package as it was too heavy for me to hold in the one hand, I swore, quite loudly as it really hurt me. He could have placed it on the floor for me seeing that I was struggling. This man was very impolite and thoughtless and caused me pain. All I'd like this time is an apology from yourselves and the delivery man and something to cheer my flat up now that I can't leave it today while my left wrist and arm recover and shoulder recover. (I’d gladly talk specifics about my disability if you need to.) <br /><br />Typing one handed,<br />Claire Smith</span><br /><br />This guy has really pissed me off with his ignorance and uncaring attitude. Disabled-Hater or ignorant git? Either way, that's no excuse for not being a decent human being.<br /><br /><span style="font-style:italic;"><span style="font-weight:bold;">These things I assume:<br /><br />These conditions are not my fault.<br /><br />These conditions don't get in MY way. (Proved by acheivements, my motivation and the love I give to other people.)<br /><br />I may have days where I am limited to do one thing but the sky's the limit for everything else.<br /></span><br /><br /></span><br /><br /><span style="font-weight:bold;">UPDATE:</span> I have had a reply and an apology from the customer service people, they are going to contact the local depot (which is up the road from me) and see what they say.Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com4tag:blogger.com,1999:blog-4707485849041143151.post-9058465294701285232009-04-02T12:00:00.001+01:002009-04-02T12:01:38.962+01:00I drewed this!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_HnA04607Jp0/SdSazCXOuGI/AAAAAAAAAFI/_EevbBERPuY/s1600-h/arg.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 128px; height: 200px;" src="http://1.bp.blogspot.com/_HnA04607Jp0/SdSazCXOuGI/AAAAAAAAAFI/_EevbBERPuY/s200/arg.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5320047261429708898" /></a><br /><br />I did this after being inspired by playing some Star Wars RP last night! I may do another one with Stormtroopers, don't steal my idea!Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1tag:blogger.com,1999:blog-4707485849041143151.post-47524176572875984742009-03-17T11:27:00.000+00:002009-03-17T11:44:33.721+00:00Email to friend on wearefibro.orgSorry for the long email, I am also going to blog this, I need to get it off my chest (and wont be using guiaifenesin for it!)<br /><br />I was reading fibrofix.com and some of the comments Anne has left on this website that are very misleading and have no basis of scientific fact, there are no obvious journal links or studies etc, and there are adverts on there too (whether she receives payment for those adverts I don't know, or care.) <br /><br /><br />It saddens me, the state of this world when people suffer and there is always someone trying to make money from it. People with FMS are often let down by the health services and people become so desperate they will try anything, and it's this preying on vunerable people (like theGuaifenesin that has been proven to be no better than a placebo when it comes to treating FMS) that really makes me angry, I want to stand up for people but feel a bit useless and lost with it all.<br /><br /><br />If you can get hold of a copy of Ben Goldacre's Bad Science, or visit his website www.badscience.com (I think) The book helpfully explains how fair tests are done. It opened my eyes. Being a newbie scientist I feel it's my job to make sure that truthful answers are given and how science (and pseudoscience) relates to people with FMS. I'm honing my skills to kick the asses of people who make false claims and raise the consciousnesseseses(!) of people who believe these claims because they don't have all the information. <br /><br />http://www.fmnetnews.com/resources-alert-product6.phpChronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com5tag:blogger.com,1999:blog-4707485849041143151.post-81700724242044727632008-12-23T09:44:00.000+00:002008-12-23T10:02:17.834+00:00HAPPY HOLIDAYSHave a great christmas and a great New Year, here are some fun pictures of festiveness for you. <br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_HnA04607Jp0/SVC17u9T1DI/AAAAAAAAAEs/BYXoKDkxT_0/s1600-h/finlandtree.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="http://4.bp.blogspot.com/_HnA04607Jp0/SVC17u9T1DI/AAAAAAAAAEs/BYXoKDkxT_0/s200/finlandtree.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5282922400727684146" /></a><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_HnA04607Jp0/SVC1sNe_YAI/AAAAAAAAAEk/9XdVPhvHdv0/s1600-h/calvin-xmas.png"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 149px; height: 200px;" src="http://2.bp.blogspot.com/_HnA04607Jp0/SVC1sNe_YAI/AAAAAAAAAEk/9XdVPhvHdv0/s200/calvin-xmas.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5282922134044106754" /></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_HnA04607Jp0/SVC0maz8-uI/AAAAAAAAAEc/qNL3g7VzUgY/s1600-h/Dawkins.Xmas320.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 138px; height: 200px;" src="http://4.bp.blogspot.com/_HnA04607Jp0/SVC0maz8-uI/AAAAAAAAAEc/qNL3g7VzUgY/s200/Dawkins.Xmas320.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5282920935030848226" /></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_HnA04607Jp0/SVC0d97po0I/AAAAAAAAAEU/FoBlieCazWc/s1600-h/nativity1hq.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://3.bp.blogspot.com/_HnA04607Jp0/SVC0d97po0I/AAAAAAAAAEU/FoBlieCazWc/s200/nativity1hq.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5282920789839553346" /></a>Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1tag:blogger.com,1999:blog-4707485849041143151.post-50585707637343425642008-11-15T17:25:00.001+00:002008-12-05T09:48:58.930+00:00Atheism and Disability<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_HnA04607Jp0/STj42KGwx9I/AAAAAAAAADM/ifahs_r6Eok/s1600-h/31555466_35af2d4ea8_o.gif"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 148px;" src="http://3.bp.blogspot.com/_HnA04607Jp0/STj42KGwx9I/AAAAAAAAADM/ifahs_r6Eok/s200/31555466_35af2d4ea8_o.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5276240572773877714" /></a><br />I was 13 when I decided that there was enough evidence for me to not believe in gods and the supernatural. Emotionally it's saved my life, with no one to blame for my bad luck, genetics and life choices (that's my taste in music, not my taste in woman, that goes under genetics!) means that I get to enjoy my life and accept me for the awesome chica that I am! It means that when faced with the long term illnesses I have I can acknowledge them and then fight it all the way. It means that my sexuality is not a thing that I should hate myself for. So loving myself and improving on my life is what I am all about. With a religion and gods in my life I'd hate myself (and did when I believed in the christian god) and would have to accept my life, as that would be his plan.<br /><br /><br />There would be no way I could accept some sort of Divine plan that I am disabled for my own good! It sucks, how could a god give me all the good things in my life then give me all the shit things that go along with it? And logically the possibility of gods is highly improbable (as you know you can't prove a negative, just as you can't prove the invisible pink unicorn doesn't exist [as symbolised above]!)<br /><br />I am happy, atheist and chronically Claire.Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com0tag:blogger.com,1999:blog-4707485849041143151.post-4725701021301378222008-11-12T12:49:00.000+00:002008-11-12T14:54:39.917+00:00Pennies, pain and pans!My Kitchen<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_HnA04607Jp0/SRrYs976vjI/AAAAAAAAACo/BNt6Af9Lrvk/s1600-h/DSCF0026.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://2.bp.blogspot.com/_HnA04607Jp0/SRrYs976vjI/AAAAAAAAACo/BNt6Af9Lrvk/s200/DSCF0026.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5267760981214936626" /></a><br /><br /><br /><br /><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_HnA04607Jp0/SRrSquKajTI/AAAAAAAAACg/0CBg0p_jihY/s1600-h/DSCF0028.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://1.bp.blogspot.com/_HnA04607Jp0/SRrSquKajTI/AAAAAAAAACg/0CBg0p_jihY/s200/DSCF0028.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5267754345551269170" /></a><br /><br /><br /><br /><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_HnA04607Jp0/SRrSg9FnHqI/AAAAAAAAACY/h5puqEQ55h8/s1600-h/DSCF0025.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://3.bp.blogspot.com/_HnA04607Jp0/SRrSg9FnHqI/AAAAAAAAACY/h5puqEQ55h8/s200/DSCF0025.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5267754177758961314" /></a><br />My friend Nath is having a Fibro Flare today and needs a hand with the dishes. I wish I could help him, I would but he lives in Scotland so by the time I'd get there I'd be spoonless!<br /><br /> I am focusing on saving my spoons <a href="http://www.butyoudontlooksick.com/the_spoon_theory/"></a> and having very little help at home is not only taking up my spoons but Oli's too. We are both running on a spoon deficit. When I clean up, I get over whelmed with fatigue afterwards, I pull muscles and the pain is very overwhelming. I may look OK, gorgeous and in a good mood, but I'm always in pain. <br />We get no help at all, we can't afford to hire a cleaner. We don't get any help from family or friends, and by the time we have cleaned up, Oli has no spoons left to help me manage my pain, and I have no spoons to make him a cuppa. Sex is out of the question when the house is a mess! <br /><br />I felt really embarrassed recently when Rehan came to stay and the place was a mess, he helped me with the dishes, we both had a sponge each! <br /><br />Most people see us on the outside, Oli has friends round once a week for gaming etc, I rarely have friends or family round, and none of our friends (minus Rehan *wink*) would be willing to help. Whether they see our situation and think us lazy, or think that once they start lending a hand they'll never stop, or that we could never repay the favour I just don't know.<br /><br />I don't know if Oli can see it, but he needs help too. He can't be expected to clean everything up. <br /><br />What I am basically saying is that if I get help it saves me spoons, so I can save spoons for you! People can get the best out of me, and I can get the best out of life. <br /><br />So what can we do? Could you give us a hand? Or is our situation too much of a burden?Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com2tag:blogger.com,1999:blog-4707485849041143151.post-31105104685811744192008-11-04T12:34:00.000+00:002008-11-12T12:43:05.969+00:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_HnA04607Jp0/SRrOonNVxtI/AAAAAAAAACQ/jYZKmi_yTas/s1600-h/DSCF0487.JPG"><img style="cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="http://4.bp.blogspot.com/_HnA04607Jp0/SRrOonNVxtI/AAAAAAAAACQ/jYZKmi_yTas/s200/DSCF0487.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5267749911278241490" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_HnA04607Jp0/SRrMow5xqTI/AAAAAAAAACI/GpT3xLEoMLQ/s1600-h/DSCF0486.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://1.bp.blogspot.com/_HnA04607Jp0/SRrMow5xqTI/AAAAAAAAACI/GpT3xLEoMLQ/s200/DSCF0486.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5267747714857281842" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_HnA04607Jp0/SRBBqcrpSBI/AAAAAAAAACA/hGkByrv4vG8/s1600-h/DSCF0485.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_HnA04607Jp0/SRBBqcrpSBI/AAAAAAAAACA/hGkByrv4vG8/s320/DSCF0485.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5264780161905674258" /></a><br />Completed Physio feel really good for it, it's the kick in the bum I needed. I feel better and better each day with enough motivation to step up my routine. Still trying to get to a warm water session but my pain has subsided just enough that I can concentrate on my daily routines. <br /><br />The pictures are of the pool where I did my physio sessions, the people there were really nice and friendly and very helpful, I really would love to go back (though the 8.30 am ambulance was a bit much!) I should ring today!Chronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1tag:blogger.com,1999:blog-4707485849041143151.post-11969701859654733882008-09-30T16:22:00.000+01:002008-10-07T10:12:19.048+01:00PhysioI have one session left, it has been really good in making me feel more motivated to get my health back up. I am starting a warm water session on a Saturday in Chorlton, should sort me right out. The worst thing about the physio appointment is the travel there and back, the first few tiems I took a cab there and bus back. I felt like i could have died doing that, so I had the ambulance pick me up. My appointment is at 10.50, the first time they picked me up I was on time for that appt, I've been early since, being picked up from 8.30am onwards. They have to pick up other people. I am not a morning person and having to spend an AGONISING hour in the bumpy ambulance isn't ideal. Infact it pisses me right off! But one more session to go....... I'll take some pictures of me doing stuff if I am allowed.<br /><br />C xChronically Clairehttp://www.blogger.com/profile/00055955557738749696noreply@blogger.com1