Yes indeed, standing for long periods of time is now extremely difficult for me also. I find myself looking round for the nearest seat everywhere I go now.
Glad ypu got your tablets okay, evnthough it was at the other end of the building. I know that feeling well. I'm shattered, and the last thing I want to do is walk further. It always seems to happen on a bad day too, and I have to do whatever!
Aha.. I'm glad it made you chuckle Lynne.. each morning for the last five days I've been making a vlog whilst taking the tablets and describing how they've made me feel, what with side effects as well. It's one to look out for, might be uploading it sometime next week perhaps.
I found this video while trying to educate myself on home steroid treatment. This gave me so much good info, and I want to thank you for that. Liked & subscribed!
Hi Angel, I'm so pleased my video was able to help you in your quest. Thank you, for subscribing to my channel, and for your kind words. Welcome - Neil.
You definitely had me laughing several times, Neil! Especially when you said you just ran 10 miles. That was a good one! You have a great sense of humor. I am looking forward to hearing how the following days of treatment went for you, but I am sure you will let us know soon enough. I hope you´re doing well of course, and the same for the Mrs. Hopefully she is not in too much pain. Sending my best!
Aha good to hear Rikke 👍 .. yep I've done a video during the steroid treatment which I'm in the process of putting together. Sadly I'm not doing so well though, I'm even thinking of contacting my MS Nurse once again, my mobility has taken a huge down turn after the steroids. I'm not saying the steroids are responsible, but it's a bit of a coincidence. Teresa's pain has been fairly intense, but she's a tough cookie. Take care - Neil.
Oh that´s not very good news :/ Contacting the nurse sounds like a good idea - she is there for that exact purpose! I will keep my fingers crossed that your mobility will take a turn for the better again within the next few days. You´re both fighters. And you will get through this.
Hi Neil, catching up on your vlogs. Hope you are coming along better these days (& your lovely wife & Molly as well). I did have a bit of a laugh over your "just ran 10 miles" as you GOT me with that one at first! Instead of "Bye" say "Ta."
Lol Zanne, glad I made you laugh.. yeah the ten mile comment did come out rather well. I try to inject a bit of humour into the videos if I can. What does "Ta" mean then? (I'm guessing it means Bye in a different language perhaps) Regards - Neil
Have I made a mistake? When I attended school in London 100 years ago we students would say to one another while leaving school (or the pub) "Ta!" meaning "See you." Has this changed?
Ah ha!! I seeee, no it's not really change but I've heard it said slightly differently and that is "Ta-ra". Thank you for clearing that one up Zanne. 😊👍 I hope all is well with yourself.
Thanks Cindy, yeah its been a rough few weeks especially as Teresa (the Wife) has just had her hand Op as well on Tuesday just gone. "We are both falling to bits" as we quite often say lol. Thanks, the Steroids are just starting to do their thing (I think) but I've not felt great today (04.02.2017) last night I felt great though, ups and downs. Aha you will indeed see me soon :)
Hi Neil, I'm following you because o have a friend in UK who thinks he has ms. I'm tryingi to support him from a long distance. I'm keeping you and wife in my prayers. love Bel
Hey Belinda, Thank you so much for your comment, and course your subscription and your kind words. I can appreciate supporting a friend at long distance can have its troubles, hopefully he has access to the internet. If so I'd be happy to answer any of his questions and give him my thoughts and opinions, as I would you also. Not sure if you've spotted my MS Vlog playlist as yet, I've just upload my latest video this evening and I think its my 30th!!. I've been doing them since March last year and really enjoyed the feedback, although my channel is getting quite busy now and I'm spending a lot of my time answering comments, which of course I don't mind doing :). There will be a link to my MS Vlog at the end of the video, alternatively I've popped the link below for you also: ruclips.net/p/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU I hope this helps, Regards - Neil.
neil, I have been on steroids on and off for several months. I start 25 mg whole tablet for 14 days for 30 days then half a tab once a day for 14 days and then taper off and wait for one month. it really takes down the inflammation and so a lot of my symptoms are still there but don't have the effect as before. I stop for 30 days or more so as not to over tax the kidneys, liver, and adrenal glands . But two weeks ago, hadn't taken oral steroids for two months, I had a really bad relapse so my neurologist and MS nurse summoned me to hospital for IV solu-medrol 1000mg and it took 50 minutes on slow drip. Went home and slept about 6 hours and then got up and started to feel a little good. Next day my symptoms in the lower back and legs really subsided and I was able to wake further with the dogs and only tripped twice. I get drop toe too and I tend to walk to one side and hit bushes and hedges. I am known in the neighborhood as the guy who drinks before breakfast So steroids really do work for reducing inflammation and reduces the pressure on nerves so you get better conductivity. Better responses in nerves so reduction in symptoms and better feeling of well being. So it isn't in the mind perse it really is the physiology of the body. So press on and we live life to the fullest as best we can. Give my regards to Mrs Bradley and her hand surgery, Molly's health, and you my friend press on. your life with family and friends are in my thoughts and prayers. bye for now.
Thank you Bode, for your kind lovely words. I have indeed passed on your regards to my wife, she is slowly recovering from her surgery but has been in a lot of pain since having it done on Tuesday. She's slowly getting there though. The Steroids I've been given is quite high dose but only over a five day period, 500mg per day for five days. I've been a bit up and down on them, I've recorded a short Vlog each morning having just taken them. I'll be uploading this over the next week or so hopefully, so you might like to watch out for this. 1000mg is seriously going for it isn't it.. but sounded like they did the trick for you. When I don't walk with my stick (or my wife) I REALLY struggle and appear drunk also, the stick stops people thinking I too have had a few before breakfast! lol.. I too have noticed my lower back has been much improved, certainly last night (03.02.2017) but sadly not today (04.02.2017), I've had a pretty bad day today with my back, lots of humming and vibrating down my legs as a results. Feels like there is so much inflammation, hopefully the steroids will properly kick in soon. Regards - Neil.
Hope you're doing better...your symptoms sound exactly like mine except my Dr won't prescribe the steroids in pill form or IV. had the IV in 2007 for 4 days and did gain some weight but it took away the symptoms. This time he's saying no 😕 so I hope you are recovering well. take care!
Hi there, I'm kind of ticking along to be honest.. thank you for asking. When I had the IV steroid in 2013, I benefitted more from them than the pill form recently. The condition has progressed further since then so I'm not sure which (IV or Pill) if any would have been better. As a rule they will only prescribe steroids if you're having a relapse. So if your Dr determines this is the case, in theory he shouldn't withhold them. Take care.
Hi Neil, Thank you for the update. I hope the medication makes you feel better. I do know that steroids can only be taken for a short course of time and infrequently; however, they are effective. I noticed a little bit of insomnia and bit of mental confidence, to the point of being less inhibited. By that I mean, I would speak a little more freely, the type of thoughts that come into your head, but you don't say because you might offend someone.Well that's what I found myself doing. Also, since you have mentioned walking I wondered if you have ever tried Dalfampridine (Ampyra)? It helps some people with their legs. I am experimenting with it. I've taken it off and on for several years and still don't know if it works for me. Best wishes Neil
Hi John, The Steroids are having an interesting effect, I'm in the process of logging a couple of minutes of video each morning describing how they're making me feel (video coming soon). Last night (03.02.2017) I felt great and was much more mobile than usual, my back felt better, but today (04.02.2017) things aren't so great again. So time will tell I suppose, still early days with the Steroid but they are definitely having an effect. Thank you for sharing how they made you feel, I can relate the Insomnia for sure. I've not tried Dalfampridine (Ampyra).. I've just done a bit of a Google, looks interesting and you'll have to let me know how you're getting along with this. Good luck. Cheers John and Best Wishes to you also. Neil.
Thank you Neil for the reply. I am looking forward to your update vlog on how things are going for you. Ampyra is named Fampyra in the UK. the link below are from some user reviews from the States. As I indicated the "Jury is still out" for my own experience. I did the timed 25 foot walk in just under 6 seconds last visit with my Doctor while not taking it. Next visit I'll try taking it for a couple weeks before to see if I am any faster. I think I dont walk very fast primarily because of pain rather than function and Fampyra is not indicated for dealing with pain, so the journey continues... www.drugs.com/comments/dalfampridine/ampyra-for-multiple-sclerosis.html
Hi John, just had a quick scan through of some of the reviews on the link you posted, thanks. Some really positive reviews of this drug, claims to be helping a lots of people. I'll be very interested to hear how you get on, I might even be tempted. Cheers - Neil.
I am going to be bold here Neil:) I see myself in you and I wish to say to you what I would say to myself in hindsight. Get a light wheel chair. Not one for always but one for things like that hospital visit. I soldiered on way too long at no one elses expense but my own. I now have a spivvy rollator/transit chair permanently in the car and use it when I can feel my poor bod running out of steam. We drive our physical vessels too hard at times, why? One benefit about illness is that it forces us to be more self caring, an attribute frowned on in our culture but priceless in it's value. Self care if practiced by everyone would reform this planet. There:) Hope I didn't sound preachy. Just sharing really.
Not Preachy at all Willo, I appreciate your caring thoughts, thanks. Back in 2013 when my walking was terribly bad, my Wife and I actually considered the prospect of a wheel chair which we could easily keep in the boot of the car. Part of the big problem is me though, I've always been so independent and very strong. To be reduced this is quite honestly heart breaking and extremely difficult to adjust to, I'm still coming to terms trying to get used to being seen out with a walking stick at 44 years old! Alas, I am realistic and I've even had my eye one those Electronic Mobility Scooters which have advanced considerably in technology since they first came out. Hopefully after these Steroids things will improve, but without being negative I think there will be a steady decline once again. Time will tell. Take care - Neil.
How well I know the territory Neil:( I too am independent as hell and vulnerability of any kind wasn't going to be part of my persona by hell or high water. But over the decades I have changed my position. Chronic illness is a broad and complex field to play on. It is not only a personal experience but an intersection with our community and society as you too understand. A lot to be said on the subject. But in the end I have adapted, slowly but surely. My challenge is the lack of some capacity and that is all right. My standing or sitting has no bearing on how open my heart is. THAT is what really counts isn't it. Self care is woefully undervalued and we are the cutting edge of that. How we cope is important not only to ourselves but to others. We are in the position to set the standard. Of course this does not take away the need to grieve but it puts it in perspective. Really only those who are living in this liminal state understand the extent of the loss. I mourn with you friend.ღ
Thank you Willo, I know exactly what you are saying, Teresa said not long ago to my Neurologist that I haven't really accepted what is happening to me where as in fact I thought I had. But she's right, I haven't really!. In my mind I can still do the things I used to, but physically I literally cannot. Slowly I'm coming around to this way of thinking, haven't really got a choice have we. And, as you say the physical challenges we have ahead of us has no bearing on how open one's heart is, yes THAT is what is important.
Hi Neil! Love your videos, I can very much relate to your story. Just wanted to share a tip for pill taking. When I have the oral ones, the form I get requires I take as many as 20 pills each morning and they are truly foul as you say. I take them with yogurt. I scoop out a spoonful, set a couple pills on top and just swallow the yogurt. I taste them far less and they go down easily. So if you like yogurt, it helps tremendously! 😊 I hope you are feeling better. I am also relapsing and taking steroids at the moment, IV this time through a home health nurse. I have very similar issues as you with worsening weakness and coordination in my legs. It is very discouraging. I wish you all the best and thank you for sharing your story!
Hey Kelly, So pleased your enjoying my videos! Oh and thanks very much for the tip, that really does sound like the perfect solution. Love yoghurt, and it's very strong tasting so it will do a good job at masking that oh so gross taste of the steroid tablets. I was only on a five day course, and finished them a week or so ago but I'll bear your idea in mind for next time (there will be a next time, I just know it🤒) After finishing the course of steroids, I went downhill massively.. mobility went to almost zero, after a few days I picked up again and I'm almost back to what is normal for me. Today has been different again though, so random!! Getting there though Kelly, thanks for asking. I sympathise with you Kelly, having the weakness and coordination problems with your legs.. trust me I really do know how you feel.. and yes as you say it is VERY discouraging but also frightening too isn't it. I find myself very fearful of whether or not I'm going to be able to resume the things I enjoy doing. I'm sorry that your having a relapse, if you don't mind me asking how has this relapse presented itself? For me, my existing symptoms flared up and never calmed down.. to be honest even after the steroid I'm not really much better. Time will tell I suppose. Thank you so much for contacting me. Kind regards - Neil.
You're a great chap, I suppose , when these Steroids work there will be no stoping you, beware to get the right running shoes ,don't won't to shatter the knees , good luck Neil , will be thinking of you
Lol Mike, thanks for that.. I do rather think my running days are over though :) aha .. I'm taking the course of Steroids over five days, and each days I'm recording a Vlog about how they've made me feel and side effects etc. So that might be one to look out for. Cheers Mike, good to hear from you. Neil.
Hi Jessica, ok well lets hope they have a positive effect on you and help. My first lot of IV steroids was in 2013 just after my diagnosis. It took about ten days before I noticed a considerable positive change in my balance and walking. So you have to be a little patient, fingers crossed for you.
Thank you Willo, Whenever there is a message for my Wife from somebody such as yourself, I always copy and paste it to her Facebook Private Messaging (I've just done this) .. her response was Thank you, that was lovely. Molly has had pat or two also, in fact as per usual she's currently by my side telling me how hungry she is :) NOT Bye for sure, I was just having a bit of a laugh. Take care - Neil.
Aha Laura, thanks for that. I've been taking the Steroids over a period of Five morning and I've also been recording a Vlog (you know me) each day so no doubt you'll be hearing all about it very soon :)
Hi Cindy.. I'm not sure if it's MS related but I do get freezing COLD painful feet every single day. The hypersensitivity and numbness in my feet highlight the cold even more. Also the hands, not sure why.. always thought I'd was circulatory.
I have an unexplained illness but i do have some dots in my brain. I can not confirm if i use them as they are illegal. But study after study shows that they protect the brain. Also lithium and e are important.
I understand I can't even stand long enough to wash my dishes before I have to lean on the counter
Yes indeed, standing for long periods of time is now extremely difficult for me also. I find myself looking round for the nearest seat everywhere I go now.
My prayers are with you and your wife Neil. I'm glad that you had a nurse that was willing to listen and work through everything with you.
Thank you Jamie, that's very kind of you.
Yes, I am very lucky to have an MS Nurse who is very efficient and very nice as well.
Oh man, I'm sorry to hear about the challenges. Hang in there and stay strong!
Hey, and thanks.. yeah its been a tough few weeks, getting there slowly (I think).
Glad ypu got your tablets okay, evnthough it was at the other end of the building. I know that feeling well. I'm shattered, and the last thing I want to do is walk further. It always seems to happen on a bad day too, and I have to do whatever!
I'm backkk!! I know from personal experience that woozy sign your bod flashed saying 'sit down, I'm buggered!!' Horrid.
Yep!! I know it all to well Willo.
thanks for the laugh Niel, good luck with the tablets, hope they help.
Aha.. I'm glad it made you chuckle Lynne.. each morning for the last five days I've been making a vlog whilst taking the tablets and describing how they've made me feel, what with side effects as well. It's one to look out for, might be uploading it sometime next week perhaps.
I found this video while trying to educate myself on home steroid treatment. This gave me so much good info, and I want to thank you for that. Liked & subscribed!
Hi Angel, I'm so pleased my video was able to help you in your quest. Thank you, for subscribing to my channel, and for your kind words. Welcome - Neil.
You definitely had me laughing several times, Neil! Especially when you said you just ran 10 miles. That was a good one! You have a great sense of humor.
I am looking forward to hearing how the following days of treatment went for you, but I am sure you will let us know soon enough.
I hope you´re doing well of course, and the same for the Mrs. Hopefully she is not in too much pain.
Sending my best!
Aha good to hear Rikke 👍 .. yep I've done a video during the steroid treatment which I'm in the process of putting together. Sadly I'm not doing so well though, I'm even thinking of contacting my MS Nurse once again, my mobility has taken a huge down turn after the steroids. I'm not saying the steroids are responsible, but it's a bit of a coincidence. Teresa's pain has been fairly intense, but she's a tough cookie. Take care - Neil.
Oh that´s not very good news :/ Contacting the nurse sounds like a good idea - she is there for that exact purpose! I will keep my fingers crossed that your mobility will take a turn for the better again within the next few days.
You´re both fighters. And you will get through this.
Thank you Rikke, I'm really hoping things will improve because to be quite honest it's scaring me.. a lot!
Hi Neil long time no speak. Hope u are recovered from your relapse now. And that your doing ok. x
Thanks Nicola, I'm getting there I think.. I hope you are well also. x
Hi Neil, catching up on your vlogs. Hope you are coming along better these days (& your lovely wife & Molly as well). I did have a bit of a laugh over your "just ran 10 miles" as you GOT me with that one at first! Instead of "Bye" say "Ta."
Lol Zanne, glad I made you laugh.. yeah the ten mile comment did come out rather well. I try to inject a bit of humour into the videos if I can. What does "Ta" mean then? (I'm guessing it means Bye in a different language perhaps)
Regards - Neil
Have I made a mistake? When I attended school in London 100 years ago we students would say to one another while leaving school (or the pub) "Ta!" meaning "See you." Has this changed?
Ah ha!! I seeee, no it's not really change but I've heard it said slightly differently and that is "Ta-ra". Thank you for clearing that one up Zanne. 😊👍 I hope all is well with yourself.
Gosh Neil! You guys are going through a lot! I hope and pray the new meds help. Good luck 🍀 with the Nasty taste 😝. See ya soon. Lol
Thanks Cindy, yeah its been a rough few weeks especially as Teresa (the Wife) has just had her hand Op as well on Tuesday just gone. "We are both falling to bits" as we quite often say lol. Thanks, the Steroids are just starting to do their thing (I think) but I've not felt great today (04.02.2017) last night I felt great though, ups and downs.
Aha you will indeed see me soon :)
Hi Neil, I'm following you because o have a friend in UK who thinks he has ms. I'm tryingi to support him from a long distance. I'm keeping you and wife in my prayers. love Bel
Hey Belinda,
Thank you so much for your comment, and course your subscription and your kind words.
I can appreciate supporting a friend at long distance can have its troubles, hopefully he has access to the internet. If so I'd be happy to answer any of his questions and give him my thoughts and opinions, as I would you also.
Not sure if you've spotted my MS Vlog playlist as yet, I've just upload my latest video this evening and I think its my 30th!!. I've been doing them since March last year and really enjoyed the feedback, although my channel is getting quite busy now and I'm spending a lot of my time answering comments, which of course I don't mind doing :).
There will be a link to my MS Vlog at the end of the video, alternatively I've popped the link below for you also:
ruclips.net/p/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU
I hope this helps,
Regards - Neil.
Thank you so much for answering me back.
I am following you. And I've learned a lot from you. Its very frustrating not knowing how to help him.
The last I watched was how my wife copes with me
My pleasure Belinda, no problem at all.
neil, I have been on steroids on and off for several months. I start 25 mg whole tablet for 14 days for 30 days then half a tab once a day for 14 days and then taper off and wait for one month. it really takes down the inflammation and so a lot of my symptoms are still there but don't have the effect as before. I stop for 30 days or more so as not to over tax the kidneys, liver, and adrenal glands . But two weeks ago, hadn't taken oral steroids for two months, I had a really bad relapse so my neurologist and MS nurse summoned me to hospital for IV solu-medrol 1000mg and it took 50 minutes on slow drip. Went home and slept about 6 hours and then got up and started to feel a little good. Next day my symptoms in the lower back and legs really subsided and I was able to wake further with the dogs and only tripped twice. I get drop toe too and I tend to walk to one side and hit bushes and hedges. I am known in the neighborhood as the guy who drinks before breakfast So steroids really do work for reducing inflammation and reduces the pressure on nerves so you get better conductivity. Better responses in nerves so reduction in symptoms and better feeling of well being. So it isn't in the mind perse it really is the physiology of the body. So press on and we live life to the fullest as best we can. Give my regards to Mrs Bradley and her hand surgery, Molly's health, and you my friend press on. your life with family and friends are in my thoughts and prayers. bye for now.
Thank you Bode, for your kind lovely words. I have indeed passed on your regards to my wife, she is slowly recovering from her surgery but has been in a lot of pain since having it done on Tuesday. She's slowly getting there though.
The Steroids I've been given is quite high dose but only over a five day period, 500mg per day for five days. I've been a bit up and down on them, I've recorded a short Vlog each morning having just taken them. I'll be uploading this over the next week or so hopefully, so you might like to watch out for this.
1000mg is seriously going for it isn't it.. but sounded like they did the trick for you. When I don't walk with my stick (or my wife) I REALLY struggle and appear drunk also, the stick stops people thinking I too have had a few before breakfast! lol.. I too have noticed my lower back has been much improved, certainly last night (03.02.2017) but sadly not today (04.02.2017), I've had a pretty bad day today with my back, lots of humming and vibrating down my legs as a results. Feels like there is so much inflammation, hopefully the steroids will properly kick in soon.
Regards - Neil.
Hope you're doing better...your symptoms sound exactly like mine except my Dr won't prescribe the steroids in pill form or IV. had the IV in 2007 for 4 days and did gain some weight but it took away the symptoms. This time he's saying no 😕 so I hope you are recovering well. take care!
Hi there, I'm kind of ticking along to be honest.. thank you for asking. When I had the IV steroid in 2013, I benefitted more from them than the pill form recently. The condition has progressed further since then so I'm not sure which (IV or Pill) if any would have been better. As a rule they will only prescribe steroids if you're having a relapse. So if your Dr determines this is the case, in theory he shouldn't withhold them. Take care.
Hi Neil,
Thank you for the update. I hope the medication makes you feel better. I do know that steroids can only be taken for a short course of time and infrequently; however, they are effective. I noticed a little bit of insomnia and bit of mental confidence, to the point of being less inhibited. By that I mean, I would speak a little more freely, the type of thoughts that come into your head, but you don't say because you might offend someone.Well that's what I found myself doing.
Also, since you have mentioned walking I wondered if you have ever tried Dalfampridine (Ampyra)? It helps some people with their legs. I am experimenting with it. I've taken it off and on for several years and still don't know if it works for me.
Best wishes Neil
Hi John,
The Steroids are having an interesting effect, I'm in the process of logging a couple of minutes of video each morning describing how they're making me feel (video coming soon). Last night (03.02.2017) I felt great and was much more mobile than usual, my back felt better, but today (04.02.2017) things aren't so great again. So time will tell I suppose, still early days with the Steroid but they are definitely having an effect. Thank you for sharing how they made you feel, I can relate the Insomnia for sure.
I've not tried Dalfampridine (Ampyra).. I've just done a bit of a Google, looks interesting and you'll have to let me know how you're getting along with this. Good luck.
Cheers John and Best Wishes to you also.
Neil.
Thank you Neil for the reply. I am looking forward to your update vlog on how things are going for you.
Ampyra is named Fampyra in the UK. the link below are from some user reviews from the States. As I indicated the "Jury is still out" for my own experience. I did the timed 25 foot walk in just under 6 seconds last visit with my Doctor while not taking it. Next visit I'll try taking it for a couple weeks before to see if I am any faster. I think I dont walk very fast primarily because of pain rather than function and Fampyra is not indicated for dealing with pain, so the journey continues...
www.drugs.com/comments/dalfampridine/ampyra-for-multiple-sclerosis.html
Hi John, just had a quick scan through of some of the reviews on the link you posted, thanks. Some really positive reviews of this drug, claims to be helping a lots of people. I'll be very interested to hear how you get on, I might even be tempted.
Cheers - Neil.
I am going to be bold here Neil:) I see myself in you and I wish to say to you what I would say to myself in hindsight. Get a light wheel chair. Not one for always but one for things like that hospital visit. I soldiered on way too long at no one elses expense but my own. I now have a spivvy rollator/transit chair permanently in the car and use it when I can feel my poor bod running out of steam. We drive our physical vessels too hard at times, why? One benefit about illness is that it forces us to be more self caring, an attribute frowned on in our culture but priceless in it's value. Self care if practiced by everyone would reform this planet. There:) Hope I didn't sound preachy. Just sharing really.
Not Preachy at all Willo, I appreciate your caring thoughts, thanks.
Back in 2013 when my walking was terribly bad, my Wife and I actually considered the prospect of a wheel chair which we could easily keep in the boot of the car. Part of the big problem is me though, I've always been so independent and very strong. To be reduced this is quite honestly heart breaking and extremely difficult to adjust to, I'm still coming to terms trying to get used to being seen out with a walking stick at 44 years old!
Alas, I am realistic and I've even had my eye one those Electronic Mobility Scooters which have advanced considerably in technology since they first came out. Hopefully after these Steroids things will improve, but without being negative I think there will be a steady decline once again. Time will tell.
Take care - Neil.
How well I know the territory Neil:(
I too am independent as hell and vulnerability of any kind wasn't going to be part of my persona by hell or high water. But over the decades I have changed my position. Chronic illness is a broad and complex field to play on. It is not only a personal experience but an intersection with our community and society as you too understand. A lot to be said on the subject. But in the end I have adapted, slowly but surely. My challenge is the lack of some capacity and that is all right. My standing or sitting has no bearing on how open my heart is. THAT is what really counts isn't it. Self care is woefully undervalued and we are the cutting edge of that. How we cope is important not only to ourselves but to others. We are in the position to set the standard. Of course this does not take away the need to grieve but it puts it in perspective.
Really only those who are living in this liminal state understand the extent of the loss. I mourn with you friend.ღ
Thank you Willo,
I know exactly what you are saying, Teresa said not long ago to my Neurologist that I haven't really accepted what is happening to me where as in fact I thought I had. But she's right, I haven't really!. In my mind I can still do the things I used to, but physically I literally cannot. Slowly I'm coming around to this way of thinking, haven't really got a choice have we. And, as you say the physical challenges we have ahead of us has no bearing on how open one's heart is, yes THAT is what is important.
Hi Neil! Love your videos, I can very much relate to your story. Just wanted to share a tip for pill taking. When I have the oral ones, the form I get requires I take as many as 20 pills each morning and they are truly foul as you say. I take them with yogurt. I scoop out a spoonful, set a couple pills on top and just swallow the yogurt. I taste them far less and they go down easily. So if you like yogurt, it helps tremendously! 😊 I hope you are feeling better. I am also relapsing and taking steroids at the moment, IV this time through a home health nurse. I have very similar issues as you with worsening weakness and coordination in my legs. It is very discouraging. I wish you all the best and thank you for sharing your story!
Oops, that was supposed to be a comment for your previous video. LOL Sorry!
Hey Kelly,
So pleased your enjoying my videos! Oh and thanks very much for the tip, that really does sound like the perfect solution. Love yoghurt, and it's very strong tasting so it will do a good job at masking that oh so gross taste of the steroid tablets. I was only on a five day course, and finished them a week or so ago but I'll bear your idea in mind for next time (there will be a next time, I just know it🤒)
After finishing the course of steroids, I went downhill massively.. mobility went to almost zero, after a few days I picked up again and I'm almost back to what is normal for me. Today has been different again though, so random!! Getting there though Kelly, thanks for asking.
I sympathise with you Kelly, having the weakness and coordination problems with your legs.. trust me I really do know how you feel.. and yes as you say it is VERY discouraging but also frightening too isn't it. I find myself very fearful of whether or not I'm going to be able to resume the things I enjoy doing.
I'm sorry that your having a relapse, if you don't mind me asking how has this relapse presented itself? For me, my existing symptoms flared up and never calmed down.. to be honest even after the steroid I'm not really much better. Time will tell I suppose.
Thank you so much for contacting me.
Kind regards - Neil.
Aha don't worry about the comment being on the wrong video, no problemo😉
You're a great chap, I suppose , when these Steroids work there will be no stoping you, beware to get the right running shoes ,don't won't to shatter the knees , good luck Neil , will be thinking of you
Lol Mike, thanks for that.. I do rather think my running days are over though :) aha .. I'm taking the course of Steroids over five days, and each days I'm recording a Vlog about how they've made me feel and side effects etc. So that might be one to look out for.
Cheers Mike, good to hear from you.
Neil.
I just went through my three Iv steriods since being told I have MS
Hi Jessica, ok well lets hope they have a positive effect on you and help. My first lot of IV steroids was in 2013 just after my diagnosis. It took about ten days before I noticed a considerable positive change in my balance and walking. So you have to be a little patient, fingers crossed for you.
Please tell your wife I am sending her healing vibes. And pat Molly for me. Keeping fingers crossed about the steroids helping.
ps. 'not' Bye!
Thank you Willo,
Whenever there is a message for my Wife from somebody such as yourself, I always copy and paste it to her Facebook Private Messaging (I've just done this) .. her response was Thank you, that was lovely. Molly has had pat or two also, in fact as per usual she's currently by my side telling me how hungry she is :)
NOT Bye for sure, I was just having a bit of a laugh.
Take care - Neil.
Best of luck with the steroids Neil, and good to see you're retaining your sense of humour. :D I won't say bye... ;)
Aha Laura, thanks for that. I've been taking the Steroids over a period of Five morning and I've also been recording a Vlog (you know me) each day so no doubt you'll be hearing all about it very soon :)
Question? Do you ever get severe chills ? Hands and feet freezing that lasts for a long time?
Hi Cindy.. I'm not sure if it's MS related but I do get freezing COLD painful feet every single day. The hypersensitivity and numbness in my feet highlight the cold even more. Also the hands, not sure why.. always thought I'd was circulatory.
Cannabanoids
Thank you, just out of interest.. do you have MS or possibly another condition, and do you take Cannabanoids yourself?
I have an unexplained illness but i do have some dots in my brain. I can not confirm if i use them as they are illegal. But study after study shows that they protect the brain. Also lithium and e are important.
Ok, thanks for that.
👋🏻 BYE😂
Glad it made you smile Cindy :)