tag:blogger.com,1999:blog-4194113230379783244.post3716084940478687693..comments2023-05-06T10:37:01.193+01:00Comments on Independent Woman: Reality checkpoint: or who's crazy?Independent Womanhttp://www.blogger.com/profile/00902378606892230890noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-4194113230379783244.post-1572287262024556692011-07-27T11:55:20.169+01:002011-07-27T11:55:20.169+01:00Kary, I'm so sorry to hear you've been hav...Kary, I'm so sorry to hear you've been having such a tough time! Much of the discussion of the long process of getting to see a Rheumatologist seems to focus on the effect this has on disease progression and treatment outcomes, but not so much on the personal and emotional impact - and it is the hardest thing to find that you can no longer rely on anything you thought you could, at a time when you are least well equipped to deal with that. Of course, when faced with a 3+ month wait for a first appointment with a Rheumatologist, you are going to do whatever you can to try and help yourself! Every time I have a flare, I go back round that circuit of 'what else could I possibly be doing to improve things?' It is a real shame that the consultant was so dismissive of your efforts, and also a great pity that other therapeutic services are not better integrated. It has been my experience that the consultant treats pain and inflammation, the GP refills prescriptions, and any other therapeutic input or support, I've had to seek out myself. I am deeply grateful to the blogging and Twitter communities for the understanding and support they provide beyond the pure facts and mechanics of the disease. I have also found Arthritis Care very good, both on their helpline and in the literature they publish. Do feel free to find me on Twitter or Facebook (same name) if you ever want to chat - and that goes for anyone who might be reading this!Independent Womanhttps://www.blogger.com/profile/00902378606892230890noreply@blogger.comtag:blogger.com,1999:blog-4194113230379783244.post-85222396624028376902011-07-27T09:48:51.594+01:002011-07-27T09:48:51.594+01:00In a strange way it is reassuring to read this as ...In a strange way it is reassuring to read this as i so recognise everything you describe about coming to terms and managing a debilitating condition. My lack of confidence has been the biggest shock and as I run my own business I've felt depressed and anxious about how and if I can continue to do so. The lack of information and knowledge of where to turn for help and my inability to begin to sort this only exacerbates the situation.<br />Your chart is great, in the absence of an appointment with a rheumatologist, I've been treated via an elimination diet, so I've kept something similar, which does <br />make you feel a hypochondriac, but now looking back over the last nearly 3 <br />months is very useful. <br />I finally had my 1st appointment yesterday via the NHS and the hostilty from the consultant to this dietary approach has left me reeling. I have never felt more bullied even to the point of virtually being threatened that I will be crawling in with permanent joint damage in 2 years time if I continue with this approach! So avenues for support and understanding seem very limited, I was even denied Physio as 'they'd be too scared to treat me if I wasn't on a drug programme'. <br />So as I'm feeling particularly down today It's good to know there are other people <br />out there with understanding.Karyhttp://www.thepluspoint.co.uknoreply@blogger.comtag:blogger.com,1999:blog-4194113230379783244.post-12736949099706232922011-07-17T18:31:50.687+01:002011-07-17T18:31:50.687+01:00Thank You @independent Woman. Very positive, and i...Thank You @independent Woman. Very positive, and inspirational to me. I am now logging my good/bad days to remind me of my good days. <br /><br />Thanks again :)silkysam1https://www.blogger.com/profile/16370596182011292333noreply@blogger.comtag:blogger.com,1999:blog-4194113230379783244.post-19278872997994055462011-07-14T20:33:54.046+01:002011-07-14T20:33:54.046+01:00Thanks to you too @silkysam1! It's incredible ...Thanks to you too @silkysam1! It's incredible how hard it can be, even for people very close to you, to comprehend the effects these illnesses have. I know I had no idea until I became I'll. This is one of the things that is motivating me to talk about my experiences. I can see that it must be particularly difficult for you in your line of work, but believe me you are not useless! It is not easy to come to terms with something that has such a profound impact on everything you are and everything you do, but it can have a positive impact in terms of rethinking what really matters to you and what defines you. I can feel another post coming on, but you may also enjoy the one about the wisdom of the sloth. Anyway, very best wishes to you too!Independent Womanhttps://www.blogger.com/profile/00902378606892230890noreply@blogger.comtag:blogger.com,1999:blog-4194113230379783244.post-44270688402810661872011-07-14T18:23:50.928+01:002011-07-14T18:23:50.928+01:00Thank you for sharing that. Reading how you feel ,...Thank you for sharing that. Reading how you feel , and your close friends/family's viewpoint of you is something I can relate to. I just never realised how soon people get fed up with you for having to depend on them.<br />I am a reflexologist and nutritional therapist so looking and being healthy was of paramount importance. Everything seems out of my control now. I have gone from being very useful to useless. All the best with your next bid for consultancy work. Oh and your chart is brilliantsilkysam1https://www.blogger.com/profile/16370596182011292333noreply@blogger.comtag:blogger.com,1999:blog-4194113230379783244.post-88364252740154011392011-07-14T18:09:01.126+01:002011-07-14T18:09:01.126+01:00I'm glad you both like the idea! It's very...I'm glad you both like the idea! It's very heartening for me to know that I'm not the only person feeling this way too, and I hope the charts are helpful to you and to anyone else who gives it a try :)Independent Womanhttps://www.blogger.com/profile/00902378606892230890noreply@blogger.comtag:blogger.com,1999:blog-4194113230379783244.post-69027433616138262682011-07-14T17:16:16.602+01:002011-07-14T17:16:16.602+01:00Thank you for writing about how I feel. I have ps...Thank you for writing about how I feel. I have psoriatic arthritis, spondyloarthropathy, and fibromyalgia. When the good times happen I so quickly forget what it feels like to be so worn out just opening my eyes. <br /><br />I'm going to try the chart. Thank you again.Scrimshaw's Firehttps://www.blogger.com/profile/17585244907779030649noreply@blogger.comtag:blogger.com,1999:blog-4194113230379783244.post-41943980813449035632011-07-14T16:20:35.705+01:002011-07-14T16:20:35.705+01:00That chart is an excellent idea! I should do one ...That chart is an excellent idea! I should do one of those!Melissahttps://www.blogger.com/profile/02491795869831026753noreply@blogger.com