I have relapsing remitting MS (RRMS) and recently started my course of Cladribine in January 20. This was because unfortunately I had a relapse despite being on injections.
I have had MS for six years now and have never really come to terms with it. It’s almost like I completely forget that I have MS until i have a relapse (numbness for me) and then I become really upset about it, as I seem to push it under the rug and forget its there.
Then the lock down came along. As I am on strong medication and only recently started my course in Jan, I have been placed in the shielding group. It’s been very difficult not being able to see my friends and family and this lock down has made me realise that I need to start accepting MS and remember that it is a part of who I am.
I have never met anyone else with MS which has been hard as I feel alone sometimes. I would love to meet others who are in the same situation as me and who understand me. I want to become more involved and hopefully make some great friendships.
If anyone sees this who might be feeling the same, or if you want to give me some advice or just to chat, please reach out I would really appreciate it!
Hi Im sorry to hear your having a tough time during this lockdown. I suffer from relapsing remitting ms.I was diagnosed with ms quite recently but havent started my treatment for ocreavus as it fell right before the coronavorus situation. I read your post and it was sad to read and would just like to let you know that your not alone and you need to try and stay strong. Try to do things to pass the time eg exercise and bake. Even watch things on netflix. I personally would recommend exercise as it releases stress relieving hormones. Even exercising then watching something. Little bit hypocritical coming from me as im one of them that just cant train unless im im the gym. But stay stromg mate. Ms is a blag i know but u just gotta try to stay positive which ill admit is hard but seems to be for me anyway, the only way. Hope this helps, thanks Ibmab lol weird name right
It’s a good thing you havent started treatment yet as I guess it puts you at less risk. Hopefully this is all over soon and you can begin your medication. I have been doing things to pass the time like working on my cooking skills and I even bought myself a bike! However, its been such a long time at home by myself now that its starting to get to me a little andI found myself becoming a little demotivated to do anything. I went out on my bike today though and definitely feel happier I hope you are coping okay during this time?
Just wanted to say as you’re newly diagnosed, that it gets easier and you learn to live with it. (Even if sometimes i do almost pretend its not there) I had a really bad time when I was first diagnosed and couldn’t come to terms with it so I hope that you are doing better than I did and that you are staying strong! The most important thing to help me get through that was having my family and friends around me so let them in
PS - I would watch Netflix but I have nearly watched everything on there! (I’ve been watching that much!)
Welcome to the club! Coming to terms with MS can be a lifelong journey - you think you’re doing fine, but then some new symptoms come along or get worse, and it can cause you to wobble a bit. Many of us can relate to the classic stages of grief - denial, anger, bargaining, depression, acceptance. It’s like our old lives - our physical abilities, daily activities, hopes for the future etc - have ‘died’, so we may find ourselves grieving the loss. Not everyone relates to this, but it sounds like you’ve been in the denial stage. There’s nothing bad about that - it’s normal, and protects you until you’re more prepared to start facing up to things. And if you find yourself experiencing anger or depression, don’t worry, it’s common. But you can move through them to a place of acceptance, even if it takes years. Acceptance doesn’t mean you’re happy about having MS or have no issues with it, or have given into MS. For me it means accepting that my life is not over, but I can build a new life now.
Personally, I know I couldn’t have got this far without my relationship with God. The MS was very aggressive with me at the start, and I was in a wheelchair all the time within 18 months. I went through a really dark time, I was close to ending it and I almost lost my faith. But somehow God got me through that time, and I came to know him as the one who suffered far worse than I ever did. And now with this lockdown, and the difficulties of not seeing people, I’m finding I can rely on Him to strengthen me.;
MS is a nasty disease and we have to make the best of a bad job.
Don’t become pre-occupied with labels such as ‘coming to terms’ or ‘denial’ or ‘accepting.’ Take each day at a time and deal as best you can with the issues of that day be they good or bad.
As for meeting others with MS - it doesn’t follow that if someone else has m.s. they will be pleasant and become friends - the m.s. community is made up of the good-bad and ugly!
Concentrate on your friends and family - don’t regard yourself as ‘different’ because you have m.s…
And most importantly don’t become obsessed with your m.s. -
Just read Dan’s message - he takes a different approach re the stages/phases of coming to grips with m.s.
It isn’t a case of he is right and I am wrong or vice versa it’s just that different people take a different approach - you should go along with what you feel comfortable with - there is no right and wrong.
You may have days when the m.s. isn’t bothering you - or days when you feel down in the dumps - just go with the flow and keep a space in your day when you don’t think about m.s.
I agree, I have been in the denial stage for a long time. As I have so far only had a few relapses, I completely forget that I have it until I have a relapse. I think I became quite upset recently as I hadn’t had a relapse for nearly three years and then boom! It hit me! However, as you say - Life is definitely not over and thats what we need to remember!
I have also found myself praying at night too as that helps me to get through, especially during lock down as you say. I’m sorry to hear that you felt low and came close to ending things, but I am glad that you came through the other side. You are not alone.
Yep, I am sure there are good and bad people but I feel like I would love to get to know others going through the same thing as me. Sometimes it can be hard explaining to people what’s up, why you feel down today or what you’re experiencing.
I would say i don’t usually have MS on my mind on a daily basis, but times like lock down and having to shield away from everyone, makes me think about it a lot…
Hi ayse, Domt worry about it, its fine . Im stil working as im considered an essential worker so not too bored and stuff. Im not that newly diagnosed ive knowm for quite some time now like 9 10 months. Sorry if my previous comment came across like i was very fresh to ms diagnosis. Not going to lie i act like i dont have it most times biut then i get reminders like every time i look down i get a shock in my legs and stuff lol.ive now come to terns with it but definetly was an uphill battlr. Theres just so much that comes with it init lol. Yeah ive let them in as they seem like u like the only ones to make me feel better. Sorry to make it about myself. Glad to hear your going on bike rides. Fantastic way to get thoae hormones anf endorphines released. But yeah ott was tough to begin with i was just like well this is all i needed! But mevermind ey lifes life i guess. Lol i get what you mean. Maybe try gaming? If u can bear it that is haha. Will do, u too Ibmab
Stay safe out there working and thank you for what you are doing!!
9-10 months is newly diagnosed! I remember being diagnosed at 18 years old and now 6.5 years down the line I still find it hard to accept sometimes. I am the same as you, I act like I dont have it until something happens. I’m glad you have come to terms with it.
I agree, you feel kind of ask yourself why does this have to happen to you? But all I say now to comfort myself is that MS isn’t a death sentence and it could have been a lot worse. I guess its just a part of our lives now!
I was actually looking into getting a nintendo switch today actually lol. I dont have an Xbox or anything, but I thought why not try something new!
There will probably be a local MS society group. This is where you could meet others with MS. Before lockdown I expect there would have been local get togethers and events - Christmas, Easter etc. They might be doing some virtual stuff now.
Myself I didn’t go to anything but they do send a regular newsletter.
I would really appreciate it!