Comments for Edinburgh M.E. Self help Group http://www.edmesh.org.uk Just another WordPress weblog Thu, 05 May 2011 13:22:51 +0000 hourly 1 http://wordpress.org/?v=3.2.1 Comment on Carole’s story by Carole Carrick http://www.edmesh.org.uk/2008/08/caroles-story/comment-page-1/#comment-648 Carole Carrick Thu, 05 May 2011 13:22:51 +0000 http://www.edmesh.org.uk/?p=64#comment-648 Hi Everyone... Popping by for an update... I've been on LDN (low dose Naltrexone) for just over 6 months now and it really does help me. I have more stamina and I recover a lot quicker from physical exertion and also mental stress. The ME is still there but LDN is definitley something I would recommend to anyone with a neuro immune disorder. it's been used for MS for quite a while now with amazing results. I hope everyone is as well as can be with this illness. Sending my love to you all. Carole.x Hi Everyone…

Popping by for an update…

I’ve been on LDN (low dose Naltrexone) for just over 6 months now and it really does help me. I have more stamina and I recover a lot quicker from physical exertion and also mental stress. The ME is still there but LDN is definitley something I would recommend to anyone with a neuro immune disorder. it’s been used for MS for quite a while now with amazing results.

I hope everyone is as well as can be with this illness. Sending my love to you all.

Carole.x

]]> Comment on Carole’s story by Carole Carrick http://www.edmesh.org.uk/2008/08/caroles-story/comment-page-1/#comment-567 Carole Carrick Fri, 19 Nov 2010 11:39:49 +0000 http://www.edmesh.org.uk/?p=64#comment-567 Hi Everyone, It's been a while since i last updated. I'm now taking LDN (Low Dose Naltrexone) I've been taking it over two months now at a VERY low dose due to medicine sensitivities. I am finding it's helping in a few ways, less pain, better bladder control and sleeping a little better. it's early days but I do recommend giving it a try. See here for more information : http://www.ldnresearchtrust.org/ C.x Hi Everyone,

It’s been a while since i last updated. I’m now taking LDN (Low Dose Naltrexone) I’ve been taking it over two months now at a VERY low dose due to medicine sensitivities. I am finding it’s helping in a few ways, less pain, better bladder control and sleeping a little better. it’s early days but I do recommend giving it a try. See here for more information :

http://www.ldnresearchtrust.org/

C.x

]]> Comment on Therapies for ME update – September 2010 by Nicole Swierkowski http://www.edmesh.org.uk/2010/09/therapies-for-me-update-september-2010/comment-page-1/#comment-565 Nicole Swierkowski Fri, 29 Oct 2010 12:06:40 +0000 http://www.edmesh.org.uk/?p=139#comment-565 Hello, I have been reading about the Edinburgh M.E. group as I am finding social life difficult since my chronic fatigue started a year ago so I thought it would be nice to meet people with similar experience. I read about your alternative therapy's project with great interest as I have received a lot of Shiatsu and Acupuncture during my illness and know of the immense benefits that I gained from them. Before I got ill I used to work part-time as a nurse and self-employed as a therapist with various therapies such as Shiatsu, Trigger point massage, Hot Stone Massag and Qi gong. It would be nice to meet the people who are organising this project and have a chat to see if I can contribute a little to it. Kind regards Nicole Swierkowski Hello,
I have been reading about the Edinburgh M.E. group as I am finding social life difficult since my chronic fatigue started a year ago so I thought it would be nice to meet people with similar experience.

I read about your alternative therapy’s project with great interest as I have received a lot of Shiatsu and Acupuncture during my illness and know of the immense benefits that I gained from them.

Before I got ill I used to work part-time as a nurse and self-employed as a therapist with various therapies such as Shiatsu, Trigger point massage, Hot Stone Massag and Qi gong. It would be nice to meet the people who are organising this project and have a chat to see if I can contribute a little to it.

Kind regards
Nicole Swierkowski

]]> Comment on Carole’s story by Carole http://www.edmesh.org.uk/2008/08/caroles-story/comment-page-1/#comment-417 Carole Tue, 02 Mar 2010 23:35:59 +0000 http://www.edmesh.org.uk/?p=64#comment-417 Hi Everyone, I thought I'd drop by and say thank you to everyone for their kind words and also let you know what has been happening in our lives the past year. Unfortunately, it hasn't been so good. I was diagnosed with Endometrial Cancer and had to go in and have a total hysterectomy.It was such a stressful time for my entire family but I have come out the other side learning a few things along the way. I have learned that I do have the most wonderful husband and Mother & Father anyone could hope for. The three of them have been so supportive and made the whole experience so less traumatic than it could have been. I have learned that I am still the strong person I thought I had lost because of this dreadful illness. It is true that the difficult things in life that don't kill you make you a stronger person. Physically I couldn't win a fight with a five year old...but mentally I am proud of what I have managed to come through in life and I will never let anyone make me feel bad about me ever again...those people are not worth my time. I also learned that the widespread belief that doctors and nurses do not take ME seriously is not always true. I do realise this happens a lot and I can't imagine what it must be like to be belittled and disbelieved but when I went into the BGH last year I was treat so well and with such compassion and respect by the Doctors, Nurses and Aneastheologists. They listened to my concerns, gave me different anaesthesia and pain relief and were very supportive of me during my recovery from the major operation I had to go through. I could not have asked for better. I have also learned that housework CAN wait and that sunshine does wonders for your soul. Take care and stay strong Carole.x Hi Everyone,

I thought I’d drop by and say thank you to everyone for their kind words and also let you know what has been happening in our lives the past year.

Unfortunately, it hasn’t been so good. I was diagnosed with Endometrial Cancer and had to go in and have a total hysterectomy.It was such a stressful time for my entire family but I have come out the other side learning a few things along the way.

I have learned that I do have the most wonderful husband and Mother & Father anyone could hope for. The three of them have been so supportive and made the whole experience so less traumatic than it could have been.

I have learned that I am still the strong person I thought I had lost because of this dreadful illness. It is true that the difficult things in life that don’t kill you make you a stronger person. Physically I couldn’t win a fight with a five year old…but mentally I am proud of what I have managed to come through in life and I will never let anyone make me feel bad about me ever again…those people are not worth my time.

I also learned that the widespread belief that doctors and nurses do not take ME seriously is not always true. I do realise this happens a lot and I can’t imagine what it must be like to be belittled and disbelieved but when I went into the BGH last year I was treat so well and with such compassion and respect by the Doctors, Nurses and Aneastheologists. They listened to my concerns, gave me different anaesthesia and pain relief and were very supportive of me during my recovery from the major operation I had to go through. I could not have asked for better.

I have also learned that housework CAN wait and that sunshine does wonders for your soul.

Take care and stay strong Carole.x

]]> Comment on Carole’s story by Gill Robertson http://www.edmesh.org.uk/2008/08/caroles-story/comment-page-1/#comment-321 Gill Robertson Thu, 05 Nov 2009 00:11:09 +0000 http://www.edmesh.org.uk/?p=64#comment-321 Its good to hear from other people who are coping with M.E.I started to get the symptoms around 3 years ago after a long stretch of overworking late nights in a bar.The first symptoms were memory loss and a sense of confusion,embarassment socially as I couldn't remember which conversation i'd had with who and so would repeat myself,I withdrew socially,then the aching limbs and lowered immune system started.I went to my doctor and she said I was stressed and gave me relaxation CDs!Of course I was stressed.I didnt know what was happening to me,I just knew I felt unwell and unable to cope. After a period of a year travelling,mostly resting, in Thailand I came home.I was engaged to a Thai man but he was refused all kinds of visas to get into the UK.I flew back to Thailand twice trying to sort this out and the second time married.However on return he was again refused entry to the UK and I began an appeal with a lawyer.All in all the fight for the visa took a year and a half.My finances were seriously in the red by this time and I was out of my mind with stress and struggling to cope with official things like lawyers apointments etc.My M.E got a lot worst.Finally I had to make a decision and left to go and live in Thailand knowing the difficulties I would face with the language barrier and trying to find employment. I found a job but on the day I was due to sign the contract as an English teacher my husband got a call from the embassy saying the decision to refuse him entry to the UK was overturned.I was so relieved as I had been unsure how I was going to cope as a teacher with my M.E being bad at the time,in charge of 22 kids in a room with no air con. We returned to Edinburgh and I struggled on doing agency work as a carer but again overdid things as was doing 50 hours a week.I got a full time job caring and felt I had to take it in order to pay of all the debt we had accumulated.I am struggling with this job too, as I am required to work 49-56 hours in a week but cannot afford to quit.My employers are not very sympathetic to my M.E and although I have approached them about changing shift patterns etc.They are unwilling to accomodate.I'm unsure where to go from here but I do know that my health has become of utmost importance to me and although the job climate is not good just now I hope that it will be possible to find a something involving less hours so I have some chance of recovery as at the present time I am becoming repeatedly ill. Gill Its good to hear from other people who are coping with M.E.I started to get the symptoms around 3 years ago after a long stretch of overworking late nights in a bar.The first symptoms were memory loss and a sense of confusion,embarassment socially as I couldn’t remember which conversation i’d had with who and so would repeat myself,I withdrew socially,then the aching limbs and lowered immune system started.I went to my doctor and she said I was stressed and gave me relaxation CDs!Of course I was stressed.I didnt know what was happening to me,I just knew I felt unwell and unable to cope.
After a period of a year travelling,mostly resting, in Thailand I came home.I was engaged to a Thai man but he was refused all kinds of visas to get into the UK.I flew back to Thailand twice trying to sort this out and the second time married.However on return he was again refused entry to the UK and I began an appeal with a lawyer.All in all the fight for the visa took a year and a half.My finances were seriously in the red by this time and I was out of my mind with stress and struggling to cope with official things like lawyers apointments etc.My M.E got a lot worst.Finally I had to make a decision and left to go and live in Thailand knowing the difficulties I would face with the language barrier and trying to find employment.
I found a job but on the day I was due to sign the contract as an English teacher my husband got a call from the embassy saying the decision to refuse him entry to the UK was overturned.I was so relieved as I had been unsure how I was going to cope as a teacher with my M.E being bad at the time,in charge of 22 kids in a room with no air con.
We returned to Edinburgh and I struggled on doing agency work as a carer but again overdid things as was doing 50 hours a week.I got a full time job caring and felt I had to take it in order to pay of all the debt we had accumulated.I am struggling with this job too, as I am required to work 49-56 hours in a week but cannot afford to quit.My employers are not very sympathetic to my M.E and although I have approached them about changing shift patterns etc.They are unwilling to accomodate.I’m unsure where to go from here but I do know that my health has become of utmost importance to me and although the job climate is not good just now I hope that it will be possible to find a something involving less hours so I have some chance of recovery as at the present time I am becoming repeatedly ill.
Gill

]]> Comment on Why Join by Edinburgh M.E. Self help Group » Events » Christmas Season Social Events - Nov/Dec 2009 http://www.edmesh.org.uk/why-join/comment-page-1/#comment-313 Edinburgh M.E. Self help Group » Events » Christmas Season Social Events - Nov/Dec 2009 Sun, 25 Oct 2009 11:52:17 +0000 http://domain1911989.sites.fasthosts.com/?page_id=34#comment-313 [...] our Join page if you wish to jbecome a [...] [...] our Join page if you wish to jbecome a [...]

]]> Comment on Donate by Edinburgh M.E. Self help Group » News » Runner completes half marathon to raise funds for edmesh - please donate! http://www.edmesh.org.uk/donate/comment-page-1/#comment-212 Edinburgh M.E. Self help Group » News » Runner completes half marathon to raise funds for edmesh - please donate! Tue, 08 Sep 2009 13:24:19 +0000 http://domain1911989.sites.fasthosts.com/?page_id=32#comment-212 [...] Run in 2 hours 21 mins. Katie was running on behalf of edmesh - you can still contribute via the donate page. edmesh will let Katie know how much her run has raised from donations.  Email this [...] [...] Run in 2 hours 21 mins. Katie was running on behalf of edmesh – you can still contribute via the donate page. edmesh will let Katie know how much her run has raised from donations.  Email this [...]

]]> Comment on Carole’s story by Maureen http://www.edmesh.org.uk/2008/08/caroles-story/comment-page-1/#comment-211 Maureen Mon, 24 Aug 2009 18:56:11 +0000 http://www.edmesh.org.uk/?p=64#comment-211 Wow. i cannot begin to think how hard it must be to have to try and look after someone as well as myself. I have had M.E. for nearly 4 years and i know how hard it is to just take as much care of myself as i can. If i had to look after someone also very ill i would find it so difficult to concentrate on my own pacing and boundaries etc. I have had to learn how to say 'NO, i am unable to do that at the moment' which is so hard, especially around those i love most (my family and friends). But through this debilitating and monstrous illness i have found such gratitude for little things. e.g. the sun shining, birds singing, flowers in my garden and a renewed love of water colour painting through the U3A. Keep positive and i was told once by a friend who has had M.E. for 18 years, "Choose your battles" meaning there are some people who are ignorant about M.E. and want you to almost justify being ill with it, leave them to it. My real friends and family don't do this. I hope one day i can walk long distances through the fields again. love Mo x Wow. i cannot begin to think how hard it must be to have to try and look after someone as well as myself. I have had M.E. for nearly 4 years and i know how hard it is to just take as much care of myself as i can. If i had to look after someone also very ill i would find it so difficult to concentrate on my own pacing and boundaries etc. I have had to learn how to say ‘NO, i am unable to do that at the moment’ which is so hard, especially around those i love most (my family and friends). But through this debilitating and monstrous illness i have found such gratitude for little things. e.g. the sun shining, birds singing, flowers in my garden and a renewed love of water colour painting through the U3A. Keep positive and i was told once by a friend who has had M.E. for 18 years, “Choose your battles” meaning there are some people who are ignorant about M.E. and want you to almost justify being ill with it, leave them to it. My real friends and family don’t do this. I hope one day i can walk long distances through the fields again. love Mo x

]]> Comment on Carole’s story by Carole http://www.edmesh.org.uk/2008/08/caroles-story/comment-page-1/#comment-195 Carole Sun, 10 May 2009 09:37:41 +0000 http://www.edmesh.org.uk/?p=64#comment-195 Hi John, Thank you for your kind words John. I have definately been a lot better the past six months or so. More ups than downs, if you know what I mean.I credit it to the Lifestyle Management Course I went on last year at the Thistle Foundation Edinburgh. They taught me to be less hard on myself and reaffirmed that I am not alone in this illness. There are so many of us. Their course included relaxation, pacing and acceptance advice. It has helped both my husband and I really, as each week I'd come home and we'd discuss what had been talked about and we both put the lessons into practice. It also helped a great deal to be with people just like me, going through the same symptoms and difficulties. A friend and I have started support meetings in the Borders too, so we can reach out to others in the same situation. We were in the local papers last week, see here: http://www.berwickshire-news.co.uk/news/New-support-group-for-Borders.5239331.jp Love, Carole.x Hi John,

Thank you for your kind words John.

I have definately been a lot better the past six months or so. More ups than downs, if you know what I mean.I credit it to the Lifestyle Management Course I went on last year at the Thistle Foundation Edinburgh. They taught me to be less hard on myself and reaffirmed that I am not alone in this illness. There are so many of us. Their course included relaxation, pacing and acceptance advice. It has helped both my husband and I really, as each week I’d come home and we’d discuss what had been talked about and we both put the lessons into practice. It also helped a great deal to be with people just like me, going through the same symptoms and difficulties.

A friend and I have started support meetings in the Borders too, so we can reach out to others in the same situation. We were in the local papers last week, see here: http://www.berwickshire-news.co.uk/news/New-support-group-for-Borders.5239331.jp

Love, Carole.x

]]> Comment on Carole’s story by John Thomson http://www.edmesh.org.uk/2008/08/caroles-story/comment-page-1/#comment-177 John Thomson Thu, 27 Nov 2008 18:28:45 +0000 http://www.edmesh.org.uk/?p=64#comment-177 I read your story with tears in my eyes!!!!! What an inspiration you are !!!!!!! to us the many sufferers!!! To have cared for a loved one when fully fit was admirable but to have been struck down with this terrible scurge M.E. is a tragedy and one you certainly do not deserve. I personally thank you for posting your story on our website ,you are very brave. I hope that people who have any doubts about the devastation this condition causes read your blog and in reflection change their opinion of this illness. Hope your path to a full recovery is realised , you deserve that at least. regards John C Thomson I read your story with tears in my eyes!!!!!
What an inspiration you are !!!!!!! to us the many sufferers!!!
To have cared for a loved one when fully fit was admirable but to have been struck down with this terrible scurge M.E. is a tragedy and one you certainly do not deserve.
I personally thank you for posting your story on our website ,you are very brave.
I hope that people who have any doubts about the devastation this condition causes read your blog and in reflection change their opinion of this illness.
Hope your path to a full recovery is realised , you deserve that at least.
regards
John C Thomson

]]>