Feels like I’m losing the will .. | Multiple Sclerosis

[@shadow03clb]

Neil, if there's anyone that knows how you feel, I can say I'm definitely one of them. Being diagnosed at 32 years old and losing the ability to not only walk, but even move my legs on my own, and not being able to use my right arm, within 4 years of being diagnosed, each day Is a struggle not only physically but mentally. I am 40 years old, and I am pretty much a quadriplegic, with the exception that I'm still able to partially use my left arm and hand. However, even that gets weak at times. The things that we took for granted are the things that I miss the most on a daily basis. Just being able to crawl into bed anytime I want, or move in bed, or to make it to the bathroom on time, easily get in the shower, and even running errands. I hate when people say that we shouldn't let MS be a daily reminder or the phrase, I have MS but MS doesn't have me. Sorry, but I have to be realistic and honest when I say that the symptoms that I endure every day are a constant reminder that I have this disease. I think the only time I forget is maybe when I'm enjoying a meal out with someone, watching a funny TV show or movie, or sleeping. I am not able to get out of the house without assistance from either my family or a friend. I had to stop driving 3 years ago as I felt unsafe and I didn't want to put myself or others in danger. I often lay in bed and I wonder, what is the purpose of me being here since I know that I have a long road ahead of me with many difficulties because of this disease. I am single, and even though I have the support of my family, I know that eventually, unless some miracle occurs, I will end up in an assisted living home. When I'm at my lowest, and when I find myself asking why I am here, I remember that God has me here for a reason. and I might not ever know what that reason is until I meet Him. As the years go by, and my ability to do anything is becoming pretty much non-existent, I find myself being very envious of others, saying that I wish I would have done this and I wish I would have done that. It really is a dark place to be. I have to pull myself out of it and remind myself of what I do have and what I have done with my life. I was blessed to have many opportunities to travel and to experience things that I know even those with healthy bodies will never be able to experience. Are you part of an MS support group? Even if it's a group online. I am a member of an MS Facebook group for women and it is now grown to more than 15,000 members from all over the globe. It's a place where we discuss our symptoms, we post pictures, we ask questions, add some humor, and it just lets you know that you're not alone. I'm sure there has to be a group for men on Facebook, or just a group in general with men and women. I don't do an MS group in my area because it meets at 6:00 at night on a weeknight, and I work all day from home. Kind of a crappy time to have a meeting for those of us with MS that are always so tired. Hang in there Neil. As you can see, I'm not someone that sugarcoats by saying, oh everything will be okay, because all you really want is someone that can understand. And I truly do.

[@NeilBradleyMS]

Hi Shadow, and thank you so much for writing such a detailed message telling myself and others how you struggle daily with MS.
I have to agree with you, I too am reminded daily of the things I can no longer do. But also the things that are getting more increasingly difficult as the days and weeks wear on. MS does have me, and I wish there was something I could do about it, I’m scared of the future. Because, I feel quite sure if I can no longer take myself to bed, or the bathroom what is the point? Then I think of my beautiful wife’s Teresa and all of my love ones, this helps ground me. I don’t want to think like this, but the disease is making me this way. It’s relentless and seems unstoppable, no matter how hard I try. Yes I’m part of a FB Group but sometimes, I have had such a gut full I simply don’t want to see those two letters sometimes. Sending you much love and hugs 🤗

[@Pardy_Animalz]

Hang in there buddy. You are an inspiration to all of us! You are a great guy. With a great wife. 🤗

[@NeilBradleyMS]

Thanks Linda.

[@thekingbee100]

"Along with the sunshine
there's gotta be a little rain sometimes" --from the song , Never promised you a Rose Garden. Focus on the good Neil. You've got Teresa and You can still see the sparrows.

[@rodneypower9368]

I’ve been going through the same thing. It’s difficult man it’s just difficult. But this is where Mrs. Bradley can help you ... she is your best friend and you will get through this together

[@halimamuslimah]

I totally understand Neil. When I feel like that, I really try to isolate myself. My attitude gets so dark that I don't want to answer to people who honestly do mean well, but cannot help. I get tired of answering "how do you feel today" questions because I feel like...what does it matter, there is no cure. I don't want to ruin anyone else's day, mood or good intentions. I do hope that you and Theresa are hanging in there, though. I am so glad you have her. She's a treasure. You have MS, but you are NOT alone. I wish you well. Better days will come, but it's hard waiting and not knowing when that will be.

[@NeilBradleyMS]

Thanks Elizabeth, know that I really do understand what your saying. I know that dark lonely place, and I too feel what’s the point as there’s no cure. I’ve literally just attempted five minutes in the garden. My legs will hardly stand me up now, and walking is VERY hard. Ive just collapsed in the chair whilst writing the message. I’ll now have to rest for an hour before I’ll be strong enough to do another five minutes. Soul destroying. You’re right though, I am blessed to have Teresa. Look after yourself, lovely to hear from you.

[@ronaawalt3311]

I know how hard it is to be positive when all seems to be in a downward spiral and out of our control, and we all get depressed believe me I've been there! I just recently admitted to myself that I may need some meds to get through this bout of depression that was brought on by worsening conditions. I'll be seeing my Nurse Practitioner next week, please talk to your MS Nurse and see if she can't be of some help in that department. I thought I would feel weak giving in to the MS, but actually I feel better just admitting that I need a bit of help. You are a very strong person, after all you are fighting one heck of a battle with MS! I really do look forward to your videos, and this one shows you are fighting the same battle as all of us with MS. You only draw us all closer together in our battle, stay STRONG Neil! ❤

[@NeilBradleyMS]

Thank you Rona, I will try but its a hard road particularly at the moment. I'm trying to focus on things that bring joy. Giving in to MS certainly is no weakness, just consider for a moment how STRONG you are having to endure this horrendous condition each and every day.

[@MichelleMybelle61]

Sad to see you so unhappy.sometimes it's hard..big hugs for you both🤗🌹

[@NeilBradleyMS]

Thank you.

[@janeweaver4733]

We all have been exactly where you are. It's okay to have these times. Half of the battle is acknowledging what is happening. The other half of the battle is accepting what is and moving forward anyway. Please be kind to yourself. You have every right to feel as you do. This will pass. Sending love and light.

[@NeilBradleyMS]

Thank you Jane.

[@Princesscarlie]

Lord, I come before you today knowing that all power is in Your hand. I know that you are the Lord and that you care for your people. Right now, my friend is struggling with a difficult trial. I can see his strength is faltering, Lord, and know that you have all of the strength that he needs.
I pray that you will reach down and touch him right now wherever he is at this moment. Let your presence fill the room where he is and let him feel an extra portion of your strength that can help him to get through this day.
He needs you now, Lord, and I thank you in advance for meeting him where he is and shoring up his strength during this difficult time.
In Jesus' name. Amen.

[@NeilBradleyMS]

Princess Carlie Thank you Carlie, you’re so kind 🙏x

[@me_shell]

It angers me so much that some people have to fight so damn hard to get proper treatment. It all comes down to money, your neurologist may want to prescribe you something but all treatment is truly dictated by insurance companies. I’m so grateful that my husbands insurance has covered every single thing that my doctors have ordered (apart from my co-pays) because I don’t know where I would be had they not. I wish it was like this across the board for all! I’m praying for strength and courage for you Neil, this disease isn’t for the weak and you are definitely NOT WEAK!!! 🙏🏽🧡

[@NeilBradleyMS]

Thanks Michelle, we have the NHS here in the UK so we have every treatment available to us. Unfortunately it’s under so much demand which make waiting time very long.

[@leewaken5059]

Yeah I truly know how you feel. It will get better, although never soon enough. We are all here for you, this is your/our community. However that helps, if at all. Hang in there, ride it through.

[@NeilBradleyMS]

Thanks Lee, it does help. 🙏

[@billielewis5562]

Oh Neil, I’m sorry your feeling like this but I have to say and please don’t take it the wrong way thank you for uploading this short video because it was REAL in regards to how tough it really is and it feels good to know that others feel like it too. I try my hardest to have the attitude ‘I have ms but ms does not have me’ but sometimes it really does feel the other way round. I hope that made sense, I mean well. Keep fighting, your a good guy and I always look forward to your videos as I’m sure many people do 💪🙏🏻

[@NeilBradleyMS]

Nice to hear from you Adele, and thanks. It does feel at the moment like MS has me and not the other way around unfortunately. I totally understand what your saying. Thanks for your message, means a lot. 🙏

[@supertransformations9087]

Neil hang in there my friend it just may be a flare up that will subside soon I'll keep you in my thoughts and prayers my good friend 🙏

[@NeilBradleyMS]

Thank you, I appreciate your kind thoughts. 🙏

[@adrianbryant7342]

Hi Neil
I know exactly how you feel I went through the same just recently. It's hard to be positive about anything when all you liked to do has been taken away and I feel for you but your not alone that's what to keep inside. People are here for you. I can't garden, fish, wash/polish car, ride my motorbike etc. As well as my MS and disc problems my MRI shows three more brain leasions and my lower spinal one is larger and now have a cervical one! It's pretty cr*p really. I struggle to even get out of bed now and have zero to look forward to but we can all be there to talk to. I'm sure your lady keeps you going my friend. Day by day mate.

[@NeilBradleyMS]

Thanks Adrian, means a lot to know I’m not alone. Not that I wish it on you or anyone. Cheers mate.

[@TB-cy1wt]

A huge hug to you, Neil. We are here to listen. Thank you for reaching out to us even in the difficult times. Wish they would hurry up and move forward with your Professor's appointment. This is not right to allow you to suffer!

[@NeilBradleyMS]

Thanks Tamara, I get tired of chasing people up. Wish they could walk a day in our shoes.

[@Jay-xy4gz]

Aw, Neil, I'm so sorry to hear this from you. You and your wife are a great pair, keep that in mind. She is there to support you and help you when times get tough. I've been through the same moments too and its infuriating, frustrating and down right annoying but I have my family there just as you do to support me and help me in any way I need and it gets better slowly, but it gets better.

[@NeilBradleyMS]

Thanks Jay 🙏

[@kellyweber627]

Hi Neil, I am so sorry you're feeling so down. I totally understand where you're coming from. I honestly get days like this and think to myself "What is the point??" The point is you are young and have a lot more living to do and most importantly you have a wife that loves and supports you!! Not everyone is fortunate like that. I am fortunate also. My husband is my rock. Always there for me. That in itself is a gift💜 Just remember, tomorrow is another day!! Wishing you well Neil. Think of you often! Your friend from the USA😊

[@NeilBradleyMS]

Thank you my friend, means a lot. x

[@zan1158]

Sad to see you like this Neil - press on - you ARE an inspiration to us. Sometimes I feel the same way- getting older, arthritis advancing through my body, hard to walk, etc., etc., etc. Can't let the frownies get you down. Focus on other wonderful things that life holds. You look almost spiritual with the sun rays shining down around your head!

[@NeilBradleyMS]

Thank you Zan for your kind words. Yes, my wife said something similar about the sun rays. ☀️

[@lw5682]

Oh Neil, I’m so sorry you feel this way. I have felt this way before too. I have come to the acceptance that I will always be on an antidepressant to help me live with this disease. I hope you feel better soon🤓

[@NeilBradleyMS]

Thank you Lynn🙏

[@mariapotter1053]

I’m so sorry to hear you are in this situation. You sound so sad. It brought me to tears. I will continue to pray for your well being. Please keep the faith. 💜

[@NeilBradleyMS]

Thank you Maria 🙏

[@louidanielle9442]

Hang in there xx I’m exactly the same atm! Utterly exhausted 😩 It’s so hard to explain it to people unless you experience it!!!!! 😘

[@NeilBradleyMS]

I’m trying Loui, it’s very hard at times isn’t it. And yes I agree, with some people it is very hard to get them to understand because we look perfectly well from the outside don’t we. It’s all the hidden pain nobody sees. Take care.

[@AJHR77]

Thank you for sharing dear Neil!! I think we all know what you are feeling,this is a tough illness. We suffer daily but I am sending you some rays of hope and hugs!! Teresa loves you dearly I wish you could get into the darn Specialist asap!!

[@sondrah150]

I'm so sorry you are having a bad go of it right now. Ms is a tough desease to put up with for sure. Please know that you are valuable to all of those who follow you. You have a lovely wife who loves you. Your desease is a rollercoaster ride and can change symptoms from bad to better. Try not to disperse over what you cant do today but concentrate on what you can. Tomorrow may be entirely different. My prayers are with you for improvement soon.

[@sondrah150]

Try not to dispare

[@NeilBradleyMS]

Thank you AJ, and thank you Sondra. 🙏

[@64digger]

I sure wish that you felt better! I watch this and I know exactly what you're saying. Damn, this is hard! I too have SPMS and I am not accepting it very well. Something as simple as putting the waterhose in a garden row and I fall. My husband helps me so much, but I want to be able to do stuff. I am angry, sad, but I do still try to find laughter. I know that we don't seem to have much to laugh about, but any least little thing is helpful.
I sure hope that you're having a good day, today! God bless you!!!🙏

[@NeilBradleyMS]

Hi Lelia, thanks for your message. It really is so difficult, I too want to continue to do things myself, things I’ve done for years, simple tasks now sometimes impossible. There’s so many things I want to do but the body is just not cooperating. I feel so let down. Like you, I still try and be happy but it’s often difficult. Unless you have this debilitating condition it’s hard for people to understand because we look well from the outside. I hope this message finds you having a better day. Best regards - Neil.

[@64digger]

Just keep finding the beauty in that beautiful garden that you have. Thank you for sharing it with me/us. I don't know how you manage to maneuver the camera, but you're doing great! I can't seem to turn my head much without losing my balance. You know that would be a good show. Lol Have you ever seen anyone ride an exercise bike with ski poles to help from falling off? That's me! Gotta keep that heart strong, they say. OMG, it's comedy at its finest. 😆
It's a beautiful day out today, lets enjoy it. Have a great day, Neil. Tell Teresa hi for me too. 😊

[@NeilBradleyMS]

Hi Lelia, I maneuver the camera with something called a "Gorilla Pod".. making it much easier to hold (Google it). That would be me also on that bike with Ski Poles lol .. I'm unable to turn my head whilst trying to walk now, I have to stop to look to my left or right otherwise I'll be on the deck as my balance is just so terrible. Have to be so careful. I will indeed say Hi to Teresa for you, in fact I read your message out to her :) Take care.

[@bodhimarkprinz3742]

I feel for you Neil and know what you are going through. I had optic neuritis so bad in right eye and that led to me falling down 10 stairs and ending up in the ER and after all day test it showed I had MS. It's been going on 5 years now and I have had two bouts of eye problems and yes it really is terrible. Because as a doctor and the need to see to stitch people up and read and use the computer, I am at the mercy of the MS. That's why my depression and the will not to go on has plaqued me. This roller coaster of life. Good days and bad days. Plays on the psyche of the mind to the point that it wears your will down. I pray and try and relate that GOD knows what I am going through and relates with my suffering but as a physical being it is a hard road to walk. Brother I will pray that the path be less un settling for you and that you and Theresa walk hand in hand toward the day break and know there a lot of us going through the same thing and we are all here for each other. Until we talk again my dear friend.

[@NeilBradleyMS]

Hi Bode, nice to hear from you .. I completely understand the difficulties with regard to you being a Doctor. I too feel like I'm at the mercy of this dreadful disease, with the need to use my computer every day and now I'm struggling with vision! It's not satisfied with taking away my mobility, it wants to carry on destroying my quality of life. Quite rightly, we are all here for each other .. I'm not enjoying the journey down this dark road though.

[@disneymummywithms]

So sorry to hear your feeling like this. Please hang in there and try to stay strong. x

[@NeilBradleyMS]

Thank you Tara x

[@mikemoon8037]

Waooow!!! Keep the faith.... in yourself. I understand that part of you is dead. I should know as I've been hit with this dreaded disease. Once you didn't have to think/process as it was natural to do. Now the challenge is on. But remember that you have and will continue to offer sound words to inspire others and hopefully help yourself. Respect goes to you🤔

[@NeilBradleyMS]

Thank you Mike, for your uplifting words.

[@senseis1]

Dear Neil I am always looking forward to find your new videos. Thank you so much. This time it hurts me to see you in such a bad mood. I really hope your eyesight gets better. I am struggling with a bad right eye for twenty years now due to optic neuritis but luckily it doesn’t get any worse. All the best to you and please keep your spirits up.

[@NeilBradleyMS]

Thank you Marin, I will try .. you too.

[@brittaroth3780]

Don’t give up!
You are not alone!
You have Teresa with you 😍!
All of us have good and bad days/ times we have to push through.
Exhausting. Sad. Hopeless.
But as far as I can see: you still can see the sparrows 👍🏻😘

[@NeilBradleyMS]

Thank you Britta. :)

[@PapaDon46]

I know exactly how you feel. Many days I wake up with a mind that wants to take on a variety of tasks, but my body quickly says no. Depression is part of the game for me.

[@NeilBradleyMS]

Hi Don, yes indeed.. there’s so many things in life I still want to do but sadly now it just not possible. I keep fighting back the darkness of depression, but it’s getting more and more difficult, the worse I get. Hang in there my friend, you’re not alone. 🙏

[@Wildflowerincali]

Hi Neil. I’m so sorry you are feeling weak. I know how you feel. I have ME/CFS. Docs have said I do not have MS but last year they thought I’d had a stroke. It was actually swelling in the brain and an infection (that had traveled to my brain). I am now talking and walking normal again but still a bit cognitively challenged. I have regained some strength back as well. My vision also got really bad and they found bulges in both my optic nerves. Make sure to get your teeth checked regularly. I know it sounds silly but one molar was the culprit in me being bed ridden last year. It was wreaking havoc on my system and I didn’t feel the infection because it was an old root canal with a crown that had gone bad. But since they kill the nerve during a root canal you don’t have pain hence you don’t know there is an underlying infection. I just want to also encourage you. You and your beautiful wife always put a big smile on my face. Sorry I’ve been absent for so long. I literally just started doing better a couple months ago and have been recovering. If you could see the joy you and your wife bring me on the other side of that camera...well it really helped me through a tough time. But I do understand what you are going through. Maybe take the scooter out when it’s nice and get the best of that good weather. I’m keeping you in my thoughts and prayers. Sending love and light your way

[@NeilBradleyMS]

Hello, an apologies for the late reply .. I was so shocked to read about your brain infection which was sourced from an infection in your tooth. Yes, I get regular dental checks thanks, fortunately for me I don't have any problems with my teeth and only have two fillings! Not bad for 46.5 years old! :) I'm really pleased to hear you're doing well and recovering from this terrifying infection. I've just read your message out loud to my wife and we both feel so honoured that our videos have help you through this tough time, and bring you so much joy. Thank you for this and your very kinds words. Sending lots of love and light right back to you there. Bless you.

[@Wildflowerincali]

Neil Bradley That makes me so happy that you two read my message together! How sweet. Give each other a big hug from me! Thank you so much for the well wishes and your reply💖
Your friend, Christina

[@NeilBradleyMS]

You’re so welcome Christina. Take care. 🤗x

[@matthewjones9065]

My Ms has not reached your level quite yet, but I have these days my friend. Just know this and gain what comfort you can from it, and that is that you are truly loved. We all go on separate but similar journeys, but I have come along with your journey because you were kind enough to lets us all come along through the good and bad. Keep the faith....we are all kindred spirits in this fight as well as yours.

[@NeilBradleyMS]

Thanks Matthew, I truly believe in reporting the good and the bad. Admittedly, a lot is bad but that’s the nature of the beast, certainly mine anyway. There’s so many MS channels I just can’t relate to, because you never get to “SEE” how the disease is effecting them truly. I hope all is well with you.

[@alrightwithms845]

Nice to see good weather in the UK!

[@rikke3101]

I understand. Still breaks my heart to hear you say it though. But at the same time I respect and admire you so much for being brutally honest about your thoughts and feelings. Because it´s okay to feel fed up and it´s okay to say it out loud.
Big hugs for you

[@NeilBradleyMS]

Thanks Rikke 🤗

[@jeffdreiling1]

Hang in there! I know how you feel. Don't give up. I enjoy your videos! You are not alone.

[@NeilBradleyMS]

Thanks Jeff.

[@suep2803]

I’ve been enjoying your channel since you started. My heart hurts that you’re so down in the dumps.

[@EverythingGwenny]

I am so sorry you are going through this right now. I have been there. It's rough. Big hugs and I hope you feel better soon.

[@NeilBradleyMS]

Thanks Gwenny.

[@risenshine2783]

It will pass... I am sure..we want you to keep posting !

[@alan-yo3ju]

Keep going Neil , the last couple of days I've felt as if I was on fire , that's about as accurate description as I can make & really that's not even true , basically I'm just fucked. Think your blogs are great .
Alan

[@NeilBradleyMS]

Thanks Alan, I know that feeling. Both thighs burning like hell. Hope you get some relief soon, Pregabalin (Lyrica) is good for the burning nerve pain.

[@chriseisenbraun5541]

I feel you, I'm so depressed every day I have no will

[@NeilBradleyMS]

I’m sorry to hear this Chris, but I know how you feel. Hang in there my friend. 🙏

[@johndempsey8109]

Just read an article by Jane Brody about chronic pain and virtual reality. It was in the NY times dated 4/29/19. The concept is if the brain becomes occupied then pain or depression is pushed out. My wife was a nurse and she told that Buddhistds we're better able to handle the pain then her other patients. I wonder if this virtual reality can help us achieve a form of mind over matter. Neil I bumped into you on you tube researching hemp oil. I hope your crisis passes.

[@NeilBradleyMS]

Hi John, thanks for the message and I hope you've perhaps come to some conclusion about CBD oil after doing your research. I agree with the mind over matter theory, I actually do this a lot by trying to distract myself from the pain and discomfort. I've been playing an on-line game called Runescape for many years, this does in fact really help me.

[@karen01969]

Its hard having PPMS no remission I said that I would never give in to a wheelchair but here I am not only im in one but I need a power chair because my arms are to weak to push myself I miss being on a cane I just could not drag my left leg any more and the right going out from under me if you can use a walker or a cane enjoy that and be thankful for each day you can walk because it does get worse i use a 32 inch flat screen tv for my pc and enlarged 100 percent just to see the screen but thank God I can see out of my left eye it gets blurry some days but the MS has took my right eye you have to go day by day and be thankful for what you can do because you may not be able to do that tomorrow one day at a time is all we have love and prayers

[@NeilBradleyMS]

Thank you Karen for your wise words.. I'm so very sorry to hear MS has taken your sight and so much of your mobility. I really am thankful for the mobility and sight I do still have, but its hard because like many of us I grieve for what I once had. Take care.

[@sonyacharie]

Thinking of you!

[@fatimaadas7181]

Sorry for hearing about your struggle ,it’s normal to feel that though.. but I wonder if you ever test for lupus

[@NeilBradleyMS]

Hi Fatima, no I haven’t .. I will google. Thanks.

[@Grim_trades]

Hang in there man just found your videos

[@NeilBradleyMS]

Jonahshaw18 Thanks You, I’m trying.. How’s things with yourself?

[@Grim_trades]

Neil Bradley just managing my symptoms trying to focus on each day as they come and not get to far in the future. I’m no where near your level yet but a year and half ago I was a normal 24 year old and now it’s not like that. I have been diagnosed with ms but my neurologist isn’t sure what it is because I have no brain lesions. They didn’t check my spine though and that was over a year ago at onset. Now I honestly feel like I have had 3 atttacks or episodes . Each coming with their own symptoms that don’t seem to fade. But I saw your one video saying your went away after a few years . I’m okay if it takes years I just hope the burning in my hands and feet goes away. I try to use cbd and kratom to cope. I turned down the lyrica and gabapetin for now

[@NeilBradleyMS]

Hey there, when all my symptoms started I had terrible burning in my hand and feet. This was one of my very first symptoms. I still get this but not as bad. I have no brain lesions either. But I’m in the process of being re diagnosed as well because I no longer fit the MS criteria even though I had a diagnosis is MS in 2013. If you get chance watch some of my latest videos because in them I explain what condition I could possibly have. It’s very key not having brain lesions in MS, because it’s rare not to have them after a while.

[@michellefry599]

Hello...... I hope this feeling your having passes soon. I have many days like this and they suck.... I find myself searching for reasons, reasons to stay on this planet, then reality hits and my reasons are right here, my wonderful Husband Nick, My three grown children and my three Grandchildren (another due in Dec ) .... You have your beautiful wife Teresa and you family, these are your reasons, now you have to focus on finding the little things that please us and make us happy... Little hobbies maybe finding new ones, my fav is sleeping lol, and I’m actually trying to start up my knitting again, who knows one day I may bake a cake, a new hobby I find myself doing is turning negatives into positives, even if they aren’t real lol just makes me feel better.... I feel pretty darn useless but you know what, I know I am loved, and I know I’d be missed, so yeah... Onwards and upwards young man !!! It’s bloody hard being happy every day, but we can only try ......
I went to see the spinal surgeon at Kings College, he said he would be more than happy to fix my C5/C6 vertebrae, basically if I don’t have surgery, a little way down the line it could cause a lot more damage than what surgery would cause if it went wrong, it may not heal my pains but it will hopefully prevent it worsening xxxx just have to wait a
Few months lol
Anyways you and Teresa take care, send you love and positive thoughts xxx

[@NeilBradleyMS]

Thanks Michelle, I really appreciate your thoughts and wise words. Sounds like the surgery is a no brainer, I wish you luck with this. Take care. xx

[@MyMSstory]

Neil this isn't going to beat you! It's ok to feel a bit down in the dumps every now and again but now it's time to go and give yourself a good talking to in the mirror. You've got this so go and get on with something you can do and stop trying to do stuff that you can't. If walking is difficult because of your balance then get on a exercise bike and get some miles done. If you can't read at the moment because your poor vision then listen to some podcasts.
Never give up trying mate, a moving target is much harder to hit so just keep moving. I once wrote this after thinking about a relapse and I think this is relevant to you at the minute.
It started off so small you didn't know it was there, your success, your achievements, your drive are what fed it and it grew.
Now it has evolved. Now it wants more and it's getting stronger, the stronger it gets the more you feed it but you don't know your feeding it.
You want it to stop but it wants more. It is getting stronger and your getting weaker and it takes more and more.
Now it is too strong and it is taking everything, it is a predator that will keep on attacking.
How can we beat it? It is so strong now, but Its strength is its weakness. It thrives on your stress and your stress is because it's thriving.
Stop feeding the beast that is eating you from inside.
Stop feeding it and it will grow weak.
Stop feeding it and you will grow strong.
I believe that My Stress is my MS and I'm in control.
I can walk away from my stress, shut it out in the cold, all alone and hungry. I don't want you in my life so jog on. #FUMS.

[@NeilBradleyMS]

Thanks Ian, for your wise words. I hear what your saying, but at this very moment in time I’m not stressed. I know it feeds the beast. I feel sad, because I’m currently sat in the garden after doing barely five mins of weeding barely unable to stand and do anymore. I’m struggling to write this message because my sight is so blurry. It is however nice sat in the lovely sunshine listening to the birds though. I hope you are enjoying the Easter Break, and your MS continues to behave itself. Best regards - Neil.

[@Ane127]

Many of us use diet to heal and reverse the disease. Please look into diets by Roy Swank, George Jelinek, and Terry Wahls. Please also consider seeing a naturopath or naturopathic doctor.

[@dmphax]

Hugs, I have been in this place, it's scary. I am not a doctor, but I am on the other side of an Optic Neuritis & assorted symptoms relapse, and l feel, where vision is affected, you need steroids sooner than later.
Do you see an Opthamologist? I would, if you have not already. Also, flat out demand that this be treated. I called all the shots this relapse with my Neuro, I called and said, I know my body and I know this is what I was like 11 years ago pre diagnosis, I know I need steroids. They did them because I was so insistent. I illustrated how my vision affected my quality of life and how so.
Please, know you are loved, and while I don't know you, I can tell you that you have an amazing gift for being in front of a camera. I sure couldn't do what you do, you are talented and I love seeing your videos.

[@NeilBradleyMS]

Thanks Laura🙏

[@dmphax]

I edited my comment and added much more Neil. Thinking of you and wishing you well.

[@tattooedchick24]

There's always going to be days that we feel bad but there's also good days. Enjoy the days that you feel really good. On your bad days, just take it easy and take some deep breaths and relax. I'm curious what type of MS you have and does your neurologist have you on a disease modifying drug? I was last told I have RRMS but that was over 7 years ago. They have me on Ocrevus. I hope your in better spirits right now.

[@NeilBradleyMS]

Thank you, and hello :) My type of MS is very up in the air at the moment.. I was diagnosed in 2013 with RRMS, but since then I've been very progressive and I've never thought I fit the RRMS criteria. Since then, I received a further SPMS diagnosis. However recent brain and full spine scan have come back all clear, so I had to have Lumbar Puncture, which also came back clear. I understand 85 - 90% of people with MS should have a positive LP test, but I didn't. So now I'm being sent to a professor of Neurology for a second opinion (still waiting for the appointment). I'm also poised to start on Ocrevus, but the hospital won't do anything until I've had my diagnosis re-confirmed.

[@tattooedchick24]

@@NeilBradleyMS we were diagnosed around the same time. I think I was diagnosed in 2012. I have a clear lumbar puncture also. There's quite a few people that have clear LP's. I hope you find the answers soon.

[@NeilBradleyMS]

Thanks, time will tell I suppose.

[@ambermaem1]

Hi Neil. I’m sorry things have been so tough on you. I truly am. Have you ever heard of Low Dose Naltrexone? My naturopath recommended I do some research on it and wants to talk about getting me on it. I haven’t started yet but from the research I’ve been doing, it seems to be helping a lot of people with little to no side effects and it’s inexpensive. So, there’s no risk really in trying it to see if it helps. Some people are saying it’s saved their lives. Just wanted to throw that out there. If it could help you, it’s worth a shot. I hope you feel better.

[@NeilBradleyMS]

Thanks Amber, I’m going to Google and have a read.

[@ambermaem1]

Hi Neil. I just ran across these series of videos on Low Dose Naltrexone experiences. You can filter them by issue by clicking on the down arrow to see people with MS. I found it very interesting and potentially promising.
www.ldnresearchtrust.org/ldn-videos?fbclid=IwAR3uMZr_cST24PJYaRNIhW4VpYSAraOMnQX6MXmzqU90BSG1sG7JANQIVNs

[@carolemoore8505]

Love and hugs to you both xx

[@NeilBradleyMS]

Thank you Carole. x

[@pattyhadaway3777]

I am so sorry you are going through this Neil. Have you spoken to your ms nurse about how you are feeling today?

[@NeilBradleyMS]

Thanks Patty, I don’t really see the point.. nothing she can do. The only thing they can do is offer steroids, and my consultant says no until my diagnosis has been reconfirmed. And for that I’ve got to wait .. easy for them to say eh.

[@pattyhadaway3777]

Neil I’m so sorry. I was thinking steroids but with your situation I guess it’s not an option. Please keep me informed on your progress. I understand the vision issue. Weirdest thing with me was I was given progressive lenses and it was weird how sometimes I would have to take them off to read even though they had built in readers. Then the arm broke on them and I am wearing an old pair that aren’t progressive and other than distance and the blurry eye I can see normal. I’m not sure if that made since but my eyes are changing everyday it seems

[@NeilBradleyMS]

It made complete sense Patty, Teresa often says her eyes change everyday as well. I get ya.

[@pattyhadaway3777]

Our bodies are crazy!!!

[@Brandi.65]

So sorry your down. Hang in there and enjoy your beautiful day. Give your wife a big hug for me. ♥️

[@OckGal]

It's a horrible feeling when our bodies fail us. My last mris showed no new lesions and my new nuero doesn't think there's any problem even though I can't seem to do anything at all any more. So she put me on anxiety meds! Even tho I've tried half a dozen before with no results. It makes me pee more, gives me a migraine, makes my stomach upset, makes me groggy and I slur my words for an hour after it kicks in. I'm just so done with doctors and medicine and not being able to do anything. Plus I was denied for disability. But as people say, we should be glad we can do as much as we still can since many others are worse. We're not as bad as we could be, right? 😐

[@NeilBradleyMS]

Sorry to hear you’re also having a bad time of it Lisa. Seems your Neuro thinks there’s no problem because that’s what the scans tell him. My scans are also completely clear, as is my LP .. perhaps I’ve not got any problems either🤦‍♂️ They need to live a day in our shoes.

[@OckGal]

@@NeilBradleyMS What bugs me is my neuro can't tell if I have progressive MS cos she just met me (apparently they can't compare notes from the year I was seeing another neuro there??) AND she thinks because there are no new lesions, it's probably not progressive. Yet I've read you get fewer lesions when you have progressive MS. Which would make sense why I don't have new ones and am....progressively getting worse! The docs seem to bring on half the stress.

[@NeilBradleyMS]

I agree with you Lisa, the Docs do bring on a lot of worry and uncertainty. They still think I’m RRMS, but I think that’s impossible. Anybody Dr with half a brain cell can see that I’m progressive. Just because we don’t fit into one of their little boxes.

[@OckGal]

@@NeilBradleyMS Seems docs aren't trained enough about MS to know what's what yet. At least we can be thankful they know SOMEthing. I'd hate to have been diagnosed decades ago like some people. And I guess there's a weird comfort in knowing docs are the same in both our countries, eh? ;) At least one day we'll get to say "I told you so!" to our docs.

[@ponynose]

I have to point it out.
Losing... not loosing 😉

[@NeilBradleyMS]

Quite right! And thank you for pointing that out, now corrected.

[@CHRISRepAZ]

What are all the medications you are taking?

[@NeilBradleyMS]

Hi Christine, I’m taking very little medication at the moment. Just paracetamol and codeine during the day for pain.

[@JeevesReturns]

Hey, buddy... it’s a day to day thing. Watch your diet and vitamins because it can really make a difference.
Just know that you’re not alone in this. There are so many of us in the same boat and rowing together works better.

[@NeilBradleyMS]

Thanks Jeeves, it’s good to know we are all in it together. 👍

[@shellyburnett63]

Hold on!

[@paultabor2446]

i neil it is just hard all the time but you like I think , people are dying today
but you ae not

[@shellyburnett63]

Does Neurologist think it is Optic Neurtis?

[@NeilBradleyMS]

Hi Michelle, the MS nurse does from how I've described it. I don't know about the Neurologist, apart from she doesn't want to give me any treatment until I've seen a Professor of Neurology for a second opinion (still waiting for the appointment). It's a waiting game.

[@nordonna]

Did you ever see the eye dr? They will tell you if you have optic neuritis. So

[@NeilBradleyMS]

Hi Nordonna, kind of .. I'm still waiting on the hospital, and I've chased them several times. They don't seem to want to do anything further for me until I've seen this professor which, surprise surprise I'm still waiting for an appointment for!.
In the meantime, I just can't sit back and do nothing so I've spoken to my Optician again who have been extremely helpful. Over the phone she told me according to the photos of my eye (which were amazing) there are no signs of Optic Neuritis which is very re-assuring. I'm going back to see them tomorrow at 2pm so they're going to check my vision over again. Hopefully it will be blurred when I go, because my sight does in fact restore back to 100% at random times of the day, but then it can get so blurry I struggle to even make faces out clearly.

[@nordonna]

Neil Bradley Good! It could be something else going on so I’m glad you are going to be seen. When did they look at your vision? It’s a quick visit but the hospital dr’s and such can’t do it. That Professor will just refer you to someone else too. It could be medicine related too. Anyway, I am relieved you are going to the place where an eye dr will be able to see what’s goin on.

[@NeilBradleyMS]

My Ophthalmologist (not hospital) last saw me on March 22nd so about five weeks ago. They are a local Opticians in town, really nice helpful people. I’ll be waiting forever if I hang on for the hospital. Thanks Nordonna.

[@adobahej8781]

Hang in there. Always remember that this life is a test and the real eternal life is with God. This temporary life can only bring limited happiness.. you may not believe in God but as a believer myself I think it is something worth looking into.
I'm an MS sufferer too. My symptoms are getting worse but I know that this life will pass. As muslims we dont make this life our paradise because this world can only bring you limited pleasures. Anyone who thinks they can outlast life is just a fool. We will all perish one day and we will not take any of the materials with us.
So perhaps, ask God to make things easier for you.
I thank him every day because at least I still have a roof over my head with food. Some people dont even have this and yet they still carry on with life!!! How stupid does it make me feel when I complain.
I could never feel your pain that you endure day to day because of MS. But life has a greater purpose

[@NeilBradleyMS]

Thank you for your lovely message. I absolutely totally respect your faith. I also believe there is a world after this one waiting, and we are here on earth for spiritual development as it were. I look forward to the day I get released from this malfunctioning body, but until that day comes my family and loved ones ground me. I also feel blessed, that we own a lovely home, and have food on the table .. yes I see where you are coming from when there are lovely people in the world who have very little. I love helping the homeless, the needy and animals .. we always buys supplies for food banks on shopping trips etc, it’s lovely to give something back. All I’ve ever done is try and do good in the world, help people to the best of my ability for no gain. I often ask myself why do I have to suffer this horrible condition when there are murderers and other types of despicable people doing horrendous acts of cruelty to others. Why don’t THEY get struck down with this cruel soul destroying condition. Sending prayers 🙏 your way. Take care.

[@vinvan4237]

You need to detox to recover.