tag:blogger.com,1999:blog-2907796984497866431.comments2023-04-30T09:43:42.508+01:00Come with M.E. on a journeyBeautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.comBlogger38125tag:blogger.com,1999:blog-2907796984497866431.post-62836011833636894612021-02-11T09:29:52.423+00:002021-02-11T09:29:52.423+00:00januvia 50 mg is a dipeptidyl peptidase-4 inhibito...<a href="https://www.dosepharmacy.com/januvia-50mg-tablet" rel="nofollow">januvia 50 mg</a> is a dipeptidyl peptidase-4 inhibitor, recommended for type 2 diabetes, especially in individuals whose diabetes can't be constrained by diet alone. It uses alongside diet and exercise. It manages the measure of sugar in the blood. tadalafil 20 mghttps://www.dosepharmacy.com/tadalista-20mg-tabletnoreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-62581686631733087632018-06-18T07:59:56.775+01:002018-06-18T07:59:56.775+01:00Beauts, i know it’s been two years, how are you? C...Beauts, i know it’s been two years, how are you? Can you share anything about your progress for those who follow?lilumhttps://www.blogger.com/profile/00737086218560603932noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-20888430731914836402016-01-16T00:49:17.605+00:002016-01-16T00:49:17.605+00:00I read anbout the free eiriu-eolas program online ...I read anbout the free eiriu-eolas program online a weeks ago and I just wanted to share it with other people as it is a free program and in case it helps someone http://eiriu-eolas.org/documents/Eiriu%20Eolas%20Quick%20Guide.pdf<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-63042663015173826522016-01-16T00:34:07.617+00:002016-01-16T00:34:07.617+00:00Great post, thanks so much for sharing. I recently...Great post, thanks so much for sharing. I recently read somewhere that humming (i.e humming a song you like) is also good for stimulating the vagus nerve. I also came across this program which is free and is supposed to stimulate the vagus nerve http://eiriu-eolas.org/online-version/ Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-56267652396689025112015-11-09T13:53:49.848+00:002015-11-09T13:53:49.848+00:00I've got a blog post brewing in my mind on thi...I've got a blog post brewing in my mind on this topic too. My cardiologist seems very focused on the heart rate bit of POTS at the expense of the Syndrome bit. This seems fair enough in a way because he's a cardiologist and this is relevant to his training. I was hoping to get a prescription for something like Mestinon which might help broader ME symptoms as well as POTS. I don't see much point going back to my local ME/CFS centre as they just look at Pacing. I think Pacing is useful but I do know about it by now. I spoke to them on the phone after a referral mix up and they couldn't guarantee I'd see a doctor (you're randomly assigned GP/Occupational Therapist/Physio Therapist) and they don't test or prescribe for anything. That was before I got a POTS diagnosis but I was pretty sure something else was going on. My GP didn't know about POTS until I suggested it so there's no way I'd have got to a diagnosis without bloggers like you writing about experiences online.<br /><br />There are lots of medications that can help with ME but where do you go to get any in the UK? In that sense the ME/CFS centres have been a backward step, as when I was diagnosed with PVFS then ME/CFS it was an immunologist who tested me for other things and prescribed based on symptoms (eg betahistine for vertigo). <br /><br />I was wondering about a neurologist but from your experience they're too focused too.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-11996168389687401412015-08-23T18:12:06.286+01:002015-08-23T18:12:06.286+01:00H. Sally
It's reassuring to know others also ...H. Sally <br />It's reassuring to know others also get these strange "turns". Even though I've had a lot of them now and I sort of know the form they take and that they do work themselves through, I still find them a bit scary because of that feeling of being out of control and as you mention the unpredictability.Beautshttps://www.blogger.com/profile/02904430375268751729noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-40812266811890086032015-08-22T20:04:53.475+01:002015-08-22T20:04:53.475+01:00I too have had a couple of these sorts of episodes...I too have had a couple of these sorts of episodes... not fun. The thing is they seem to be hard to predict. Hopefully a bit of rest in the next day or two will put you back on normal form once more. xx Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-89705165638447493862015-08-16T18:42:25.049+01:002015-08-16T18:42:25.049+01:00Beauts it's good to see you back. Was getting ...Beauts it's good to see you back. Was getting a bit worried about you for a while. But...OMG...BCC! I don't know what to say except I'm glad to see you're getting through it and wish you well in your recovery. My cousin was diagnosed last year, 6 months before her wedding. She had surgery and was given the all clear a month before her wedding. She still needs to be followed up but you can get through this. Please keep us posted on here x. I'm sorry to hear you've been set back a bit with your energy levels. I've been having similar problems. It's like you can't seem to break through that 'energy ceiling' that always seem to stop you short of just where I would like to be. Dr Myhill has put up a post on reprogramming the brain if you feel reasonably recovered but can't seem to get to the final post. It's worth reading if nothing else: http://www.doctormyhill.co.uk/wiki/Reprogramming_the_brain_in_CFS/ME<br />I've asked Dr Myhill if she thinks the protocol would be good for me but has said I need to see my own GP as I've never actually had a face to face with her. I KNOW my GP would be a dead end.<br />Anyway just wanted to let you know that it's good to see you posting again. You have been missed...xgazanjhttps://www.blogger.com/profile/07608354767711908500noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-37549263275254127292015-08-13T16:37:06.150+01:002015-08-13T16:37:06.150+01:00Thanks for your comment Katy, you have motivated m...Thanks for your comment Katy, you have motivated me to update my blog today : )<br />The good news is that people of your age are more able to make a full recovery. I hope it goes well for you.Beautshttps://www.blogger.com/profile/02904430375268751729noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-89737664848346157942015-08-08T23:21:56.426+01:002015-08-08T23:21:56.426+01:00*nice
*nice<br />Anonymoushttps://www.blogger.com/profile/11600808169805130710noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-56546115764126982272015-08-08T23:21:19.562+01:002015-08-08T23:21:19.562+01:00Hi only just found your blog! Once suffered from M...Hi only just found your blog! Once suffered from M.E for nearly four years now, and am 19, just to say how no e it is to read about someone else's experiance and feel like I'm not alone going through this, as lately it feels like everyone is just sick of me being ill. Best of luck to you xAnonymoushttps://www.blogger.com/profile/11600808169805130710noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-24607838968099940192015-03-11T20:54:01.142+00:002015-03-11T20:54:01.142+00:00Thanks for sending the catastrophe theory link to ...Thanks for sending the catastrophe theory link to me, I had read the original paper, but had not seen the June 2014 addendum, which actually feels very relevant to me. It has been a constant state of putting one protocol on top of another and making little steps forward each time and it is true that as I have started to feel better I have relaxed off those protocolsvery gently but probably significantly. Reading this has reminded me how important it is to get back on it, so Thankyou very much. I feel mentally boosted now. Thanks.Beautshttps://www.blogger.com/profile/02904430375268751729noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-89279930910409697362015-03-11T20:10:15.499+00:002015-03-11T20:10:15.499+00:00Sorry, here's the link - http://www.drmyhill.c...Sorry, here's the link - http://www.drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we_get_into_and_how_we_get_out_of_CFS<br />gazanjhttps://www.blogger.com/profile/07608354767711908500noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-68467504228059096272015-03-11T20:09:15.207+00:002015-03-11T20:09:15.207+00:00I feel your pain. I love reading your blog. Post C...I feel your pain. I love reading your blog. Post Christmas is always a difficult time. I was diagnosed with ME in 2010. I know it's difficult right now but now that you've put your protocols back in place you will improve even if it is slowly. You sound like you pushed through your limit. You shoulread CFS - catastrophe theory as it explains it quite well here. Keep blogging - you remind me I'm not suffering alone...gazanjhttps://www.blogger.com/profile/07608354767711908500noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-78784251349401105352014-10-19T09:02:25.030+01:002014-10-19T09:02:25.030+01:00Hi Amanda. I have mixed feelings about my visit t...Hi Amanda. I have mixed feelings about my visit to Dr Mukherjee. She was excellent, she gave me lots of her time and was obviously very knowledgable. I always find it reassuring to sit infront of a doctor who actually seems to have an interest and great knowledge and experience of ME cases. So, for no other reason it was a useful visit and we had a helpful conversation. The downside of it was that for me, the thorough range of blood tests she ran confirmed that I was perimenopausal, but didn't bring up anything abnormal that she could use to work with. So, going forward, there was nothing she could do for me. I'm not still seeing her, but if I do take another bad dip in my recovery, I would ask to see her again so that i might tap into her knowledge. Good Luck with your visit.Beautshttps://www.blogger.com/profile/02904430375268751729noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-20590621531084547032014-10-17T15:40:33.145+01:002014-10-17T15:40:33.145+01:00Hi, our blog is a mine of wonderful information as...Hi, our blog is a mine of wonderful information as I too was struck down with CFS since June 2010. However, I've also had underlying tested and confirmed anemia, adrenal insufficiency, hashimotos, diabetes (haha and it goes on!) <br /><br />I'm looking to see and endo in the Manchester area and came across this post for Dr Mukherjee. I was wondering how you got on with tha appointment as I'm about to ask for a referral to the same Dr.<br /><br />Could you pls email me on: an38748@aol.com with an info about her treatment. Do you still see her? <br /><br />Anyway, wishing you continued success of your journey!! Thanks!! Amanda DAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-24726949247994069272013-08-21T16:58:17.272+01:002013-08-21T16:58:17.272+01:00Hi Katy
Yes, my fitbit does record all low levels ...Hi Katy<br />Yes, my fitbit does record all low levels of activity. when I start moving it might not trigger until 3 or 4 steps into my movement but it then seems to catch up and add those first few steps on.<br />I love my fitbit and wear it every day it gives me an easy indicator of how much I've done at any point during the day. Whereas when I was manually trying to monitor activity it was a nuisance to try and note it as I went along and then not very acurate if I left it until the end of the day and tried to remember so it's been brilliant from that point of view.<br />I have the Fitbit Ultra which has been replaced by the Fitbit One now I think. I like it because it monitors steps but when I connect to the PC it will also tell me about how much time I've spent sedentary, lightly active, fairly active or very active. So, all those little activities that you are talking about - tending to the dog and picking things up do seem to get taken into account too. They now do a Fitbit Flex which I think monitors "activity" rather than steps and gives you an activity score, so, a bit different to mine, but just as useful I suppose giving you a score that you can use to monitor yourself with and compare with previous days etc.<br />I did Dr Myhills Stone Age diet for 4 months rigidly when I was first in contact with her, but didn't find that the dietry changes made any difference to my bowel symptoms. I dont think I have any food intolerances. So, I gradually eased off on the stone age diet and reintroduced some dairy and sugar. I still dont have very much wheat and absolutly no alcohol or caffeine of any sort (including chocolate!). Of all those things I think the reintroduction of refined sugar has probably not been a good thing. My body does feel different when I'm not eating processed sugars, so I am glad to be trying Dr Wahls eating regime. The main difference I see so far between Dr Myhill's and Dr Wahl's diet is the emphasis on the volumes of fruit and veg that Dr Wahls makes, especially the green veg. I'm enjoying reading the book, it explains some of the bio chemistry in a very readable way and there are lots of recipes in the back. Anyway, i'll keep blogging about how that's going. Good luck with your monitor shopping, let me know how you get on.Beautshttps://www.blogger.com/profile/02904430375268751729noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-64719933847953132542013-08-21T06:20:08.898+01:002013-08-21T06:20:08.898+01:00Hi Beauts,
I just found your blog when I was sear...Hi Beauts, <br />I just found your blog when I was searching for information on activity monitors, like Fitbit, and their use by people with CFS/ME. I hope you don't mind me contacting you this way. I have moderately severe CFS/ME and a low functioning level. I'm curious about the Fitbit and wonder if it would be any good monitoring my up and down activity and walking around. Did it monitor anything when you were moving slowly around the V&A back in January?<br /><br />I'm just starting to look at monitors. Some look like they only monitor/count steps, etc. when you are stepping lively/aerobically for a certain amount of time (ie, 10 minutes). I'd like to be able to measure all my little up and moving periods and see what they add up to. This may only be 32 steps or so at a time back and forth to the kitchen or bathroom. Does it record anything when you are up and down, bending over and doing things like picking things up off the floor or tending to the dog? <br /><br />Some days I'm more active when I have to go out and grocery shop, do errands, etc. About every other day, I'm out walking around the garden watering and doing tiny gardening tasks for 5-20 minutes. Would it record any of that? In your experience with the Fitbit, will it monitor low, brief levels of activity? Are you still using yours?<br /><br />I was very excited to see you mention Dr. Myhill and Dr. Wahls. I have started a very low carbohydrate (from veggies)and high meat protein diet similar to Dr. Myhill's Stone Age diet. I say similar because I am still consuming small amounts of dairy (cream in couple of cups of my coffee per day and a small amount of cheese.). I'm using Dr. Atkin's diet so far because I can make it like Dr. Myhill's, but I have more structure and also have support from other people using it (ie, support groups on Facebook) to help me stay motivated and overcome problems along the way. Have you tried Dr. Myhill's diet plan or any other similar ones? I, too just found Dr. Wahl's website and videos on YouTube. Her results are very exciting, aren't they? I haven't ordered her book yet.<br /><br />Thank you for your time and I wish you the best of luck. I'm going be reading more of your blog over the next few days. It's nice to 'meet' people dealing with similar issues.<br /><br />Katykatyhttps://www.blogger.com/profile/16138698366752675389noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-73911637653089066692013-07-25T18:06:39.005+01:002013-07-25T18:06:39.005+01:00Hi are you still using the Fitbit Tracker? I am an...Hi are you still using the Fitbit Tracker? I am an Occupational Therapist living with ME/CFS and have been developing an App to help people Pace Activity.<br /><br />The app is called the ME Diary and more info can be found here:http://www.mecfsdiary.com<br /><br />We are interested in integrating a device such as Fitbit with the diary app.<br /><br />It would be great to get some feedback on how it is working. If you are interested you can contact us at contact@mecfsdiary.com. Nice Blog by the way. Keep it up. Kevin Walkinshawhttp://www.mecfsdiary.com/noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-40892801111206963932013-07-08T22:01:31.754+01:002013-07-08T22:01:31.754+01:00I've had a bit of that too the last few days.....I've had a bit of that too the last few days.... for me I know it was because I went above my normal. Having taken the freedom of a few more steps when it seemed okay I am paying a bit of a penalty. I should have known better. It seems yours has snuck up on you without apparent cause. Hopefully a few days rest will put everything right again for you. :)Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-73826806878027484492013-07-05T08:01:26.891+01:002013-07-05T08:01:26.891+01:00I'm wobbling as I've gone over my usual th...I'm wobbling as I've gone over my usual thousand steps... What ever one's step budget is, it is never enough is it? Although, me having such a low one means I use a scooter -- which if I could walk more might mean my life was actually much more restricted than it is....<br /><br />However it's still those special days that tip the balance - so I know just what you are saying...... <br /><br />I did 1400 steps yesterday due to the excitement of getting a new puppy! (Who now has to learn to run beside my mobility scooter....) Still there could be worse things to extravagantly spend steps on I suppose. <br /><br />PS He's called Finn - and I'm just heading over to http://www.abilityforagility.blogspot.co.uk to write a pic heavy blog post about him & that at least should keep me in one place for a while!Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-25886006708848899582013-06-25T07:41:13.140+01:002013-06-25T07:41:13.140+01:00Sometimes you've just got to do what you'v...Sometimes you've just got to do what you've got to do ; )<br />Lovely to hear your boys are doing so well Sue.Beautshttps://www.blogger.com/profile/02904430375268751729noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-15947380603801318902013-06-25T00:13:58.413+01:002013-06-25T00:13:58.413+01:00I'm the same way and also pushed myself too ha...I'm the same way and also pushed myself too hard last week, with my mom visiting. You would think that after 11 years with ME/CFS, I would know by now not to push, but sometimes I still forget to listen to my body.<br /><br />I hope you get the rest you need this week!<br /><br />Sue<br /><br /><a href="http://bookbybook.blogspot.com/" rel="nofollow">Book By Book</a><br /><br /><a href="http://livewithcfs.blogspot.com/" rel="nofollow">Live with CFS</a><br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-51680790034049457932013-05-20T03:22:09.496+01:002013-05-20T03:22:09.496+01:00Aw, sorry you're experiencing this dip in your...Aw, sorry you're experiencing this dip in your energy levels! I hope you get back to feeling enthusiastic and more energized again soon!DolceVitahttps://www.blogger.com/profile/04019903072270401694noreply@blogger.comtag:blogger.com,1999:blog-2907796984497866431.post-32607300120253190202013-05-08T14:37:56.399+01:002013-05-08T14:37:56.399+01:00Awww... Thanks for linking to my blog. I was just...Awww... Thanks for linking to my blog. I was just about to reply regarding the 5:2 thing and suddenly saw my name at the bottom of your post. Thank you for sharing. I've had some lovely supportive responses from people. <br /><br />So the 5:2 thing. I watched a very good BBC programme about Sept time on this. It had been done by Panorama or Horizon or something. It was saying very much the same thing, that the occasional starving is actually quite good for us and leads to tissue repairs etc. <br /><br />I did it for a while and found I could adjust to it remarkably well. Then for a while I used the other intermittent fasting idea of not eating after 7pm or before 11am. I liked this one as it was easier socially. Recently I've let it slip as the morning supplements I take say they are to be taken with food. Nothing is ever totally straight forward!<br /><br />Let us all know how it goes won't you. :)Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.com