@jj5sim

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jj5sim

Do you ever regret saying something?

It is almost exactly two years since I was diagnosed. This is the 6th high dose of steroids I have had 2day being the 1st day of most recent dose I stupidly said to a friend that Absolutly nothing stops me from sleeping including 1000mg of steroids or so I thought! (6.00am still awake and my mind is racing! I apologies for the long winded post and completely understand anyone who clicks on the post takes one look at it says to themselves, F*** that for a laugh! BUT PLEASE SkIP TO THE LAST 2 PARAGRAPHS as they are the most important and relevant to everyone on here It is almost exactly two years since I was diagnosed. This is the 6th high dose of steroids I have had 2day being the 1st day of most recent dose I stupidly said to a friend that Absolutly nothing stops me from sleeping including 1000mg of steroids or so I thought! (6.00am still awake and my mind is racing! There have been ups and downs and many different emotions throughout the past two years and I suppose I have been reflecting for the past week on everything that has changed, for the better and worse. When I have told people about the ms and various other unfortunate things that have happened to me and my wife over the past two years they have commented that we are the most unlucky people they know! But I laugh because that is my way of coping, seeing the funny side of any situation. But also because I feel like the luckiest man in the world. I have business with my father so flexible hours when needed, I have had 0 sick days since diagnosis-probably should have had some but I love my job, I have a very supportive family around me. My wife is an absolute saint, she works for the NHS in a different area from where we live and is trained in speech and language, physio and occupational therapy (very useful! But a pain in the neck when u can't be bothered to do exercises, that she knows you are doing half arsed and stands and correctly informs me that it is for my own good!) and on a daily basis she deals with patients with ms in the community and on wards. So She tells me that i have started an episode before I have even considered it and she is always right, 5/7 so far. The two she didn't get were the 1st that I did not mention to her and did not go to gp about, the 2nd she thought I had ms but didn't mention it to me because she didn't want me to worry as she was doing enough for both of us. But her face turning more and more white with every question the neurologist asked me and every answer I gave him certainly made me worry Many complain about waiting times in the NHS, staff that do not care about the patients or take pride in what they do but being lucky again I have not experienced any of that! I had not been to a gp in 5 years about anything until my wife made me go and see about the tingling pain in my left side. I saw the gp on the Tuesday, neurologist on the Friday who diagnosed me after half an hour and had an MRI for conformation within the fortnight. I have frequent contact with my two brilliant ms nurses who have relapse clinics every week if needed or next day if I feel it cannot wait till Friday , and return my phone call to their direct line within 3hrs. The neurologist that I have is superb. Again returns my phone call within the day and arranges anything that needs to be done soon after. My local gp practice I get an appointment within the same day and are eager to have conversations with neuro and ms nurses so they are all on the same page who both get in touch with the gp as quick as they do me. The Bupa ms nurse phones me every month for the past 19 months to double check that I am ok to take delivery of extavia and genuinely asks if everything is going well with the meds and injections sites etc. it probably took 6months for me to not look at shift and other sites every single day to learn something new about ms and it took more than a year for me to not think about ms every day which at times has distracted me from things that are happening right in front of me. But I would like to thank all of the members that have ever posted something or replied to a post because over the past 2 years you have taught me so much even at times when it was not directly to me but helping others with advice , support, a rant, a joke, a moan. And that is what I love about shift.ms, everyone is included. The biggest thank you would have to be to @stumbler. I see him as the gel that hold shift together on a daily basis, answering people's questions about the thing that has just turned their world upside down in a calming voice of support , knowledge and understand. When he doesn't know the answer he says so and goes off and researches the subject to try and help with advice/ support or link to somewhere that might help. He does not try to tell anyone what would be best for them (which I am sure he could easily do with his vast knowledge and years of experience) but rather gives them as much information as he can in the simplest form for them to make their own mind up. There are some terrible people and things happening in the world in the world and it fills me with so much hope and pride that I know of a place that helps so many people and a man who has a true heart of gold and astonishing willingness to help others when they are at there most vulnerable, dealing with probably the most dramatic ordeal of there life so far. I know similar post have been here for @stumbler before but I don't believe there could ever be enough to truly let him understand how much he has done for me and shift members in general, I would not know a fraction of what I do if it were not for him, so thank you There have been ups and downs and many different emotions throughout the past two years and I suppose I have been reflecting for the past week on everything that has changed, for the better and worse. When I have told people about the ms and various other unfortunate things that have happened to me and my wife over the past two years they have commented that we are the most unlucky people they know! But I laugh because that is my way of coping, seeing the funny side of any situation. But also because I feel like the luckiest man in the world. I have business with my father so flexible hours when needed, I have had 0 sick days since diagnosis-probably should have but I love my job, I have a very supportive family around me. My wife is an absolute saint, she works for the NHS and is trained in speech and language, physio and occupational therapy (very useful! But a pain in the neck when u can't be bothered to do exercises, that she knows you are doing half arsed and stands and correctly informs me that it is for my own good!) and on a daily basis she deals with patients with ms in the community and on wards. She tells me that i have started an episode before I have even considered it and she is always right, 5/7 so far. The two she didn't get were the 1st that I did not mention to her and did not go to gp about, the 2nd she thought I had ms but didn't mention it to me because she didn't want me to worry as she was doing enough for both of us. But her face turning more and more white with every question the neurologist asked me and every answer I gave him certainly made me worry Many complain about waiting times in the NHS, staff that do not care about the patients or take pride in what they do but being lucky again I have not experienced any of that! I had not been to a gp in 5 years about anything until my wife made me go and see about the tingling pain in my left side. I saw the gp on the Tuesday, neurologist on the Friday who diagnosed me after half an hour and had an MRI for conformation within the fortnight. I have frequent contact with my two brilliant ms nurses who have relapse clinics every week if needed or next day if I feel it cannot wait till Friday , and return my phone call to their direct line within 3hrs. The neurologist that I have is superb. Again returns my phone call within the day and arranges anything that needs to be done soon after. My local gp practice I get an appointment within the same day and are eager to have conversations with neuro and ms nurses so they are all on the same page who both get in touch with the gp as quick as they do me. The Bupa ms nurse phones me every month for the past 19 months to double check that I am ok to take delivery of extavia and genuinely asks if everything is going well with the meds and injections sites etc. it probably took 6months for me to not look at shift and other sites every single day to learn something new about ms and it took more than a year for me to not think about ms every day which at timehas distracted me from things that are happening right in front of me. I promise never to post something when on steroids ever again!!!!!! But I would like to thank all of the members that have ever posted something or replied to a post because over the past 2 years you have taught me so much even at times when it was not directly to me but helping others with advice , support, a rant, a joke, a moan. And that is what I love about shift.ms, everyone is included. The biggest thank you would have to be to @stumbler. I see him as the gel that hold shift together on a daily basis, answering people's questions about the thing that has just turned their world upside down in a calming voice of support , knowledge and understand. When he doesn't know the answer he says so and goes off and researches the subject to try and help with advice/ support or link to somewhere that might help. He does not try to tell anyone what would be best for them (which I am sure he could easily do with vast knowledge and years of experience) but rather gives them as much information as he can in the simplest form for them to make their own mind up. There are some terrible people and things happening in the world and it fills me with so much hope and pride that I know of a man who has a true heart of gold and astonishing willingness to help others when they are at there most vulnerable, dealing with probably the most dramatic ordeal of there life so far. I know similar post have been here for @stumbler before but I don't believe there could ever be enough to truly let him understand how much he has done for me and the shift community in general, I would not know a fraction of what I do if it were not for him, so thank you.