Last reply 1 year ago
Adjusting to it all


This is my first post so please be gentle!

I was diagnosed with RRMS a couple of weeks ago. It was a matter of 4-5 months between GP appointment to diagnosis and, although I was worried it was MS since weird symptoms 4 years ago I just assumed Dr Google would be wrong, I had no idea that the neurologist was looking for MS so it’s all very new.

I’ve never been a patient patient, and have always had to be very self reliant, determined, independent, and always the person looking after others and turning down help. I had already made practical changes in my life to accommodate ongoing symptoms and that’s working, I’ve built in a lot of flexibility. But I hate that I can’t know what will happen next, or when, and I’m scared that it will get in the way of my life! And appointments and monitoring symptoms and learning about MS all feels like an extra job!

Anyway, I wanted to ask, how have you managed adjustments like that where MS has challenged your way of thinking? Did you have to learn how to accept help? How did you do that?

Thanks for reading, and (hopefully) replying!

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1 year ago

Hi @nicecupoftea .

This is all very new to you, so give yourself time to learn and understand this condition. But, life is just one big lesson and we never stop learning.

I think you’ll find that most of us were self reliant, determined and independent. But, life is all about evolving. Things changes and, as you’ve already managed. we have to adapt to move forward.

Accepting help/assistance is just one of those changes and one of the hardest to accommodate. If you’re like me, you’ll never fully submit to this. But, this will become a source of frustration to you and the people around you.

Worries about the future are natural. Everybody has an uncertain future. This diagnosis has just brought this into focus for you. But, it will “persuade” you to make lifestyle choices which will to be of benefit to you. It will also give you the opportunity to re-assess your life and to see what is really important to you.

Anyway, MS has now become a manageable condition with a range of treatments to help us. Have you had any discussions with your Neuro/MS Nurse regarding this?

1 year ago

I worried about everything at first, would I relapse soon, will I be okay In the future, what will happen with work etc, but over time it just becomes one of those things. You sound like me- very independent and refuse help/refuse to ask for it so your determination will probably help you adjust. I needed to know how likely I was to progress/worsen based on people with similar patterns to me and I’ve been told it’s likely, but I needed to know. Threw me at first but I’m still active, still healthy, have mild symptoms if any just try to stay “normal”. I think the first month or so was the worst, and I did all sorts of research into drugs for my next appointment, as well as getting together all the questions I wanted to ask. I went quiet for a while but since then the only time it crosses my mind is when I need to take my meds, which I didn’t believe it would but has just become part of my routine now. I found some support groups- I assume from your name you may be in the U.K.? The MS society has local branches and offer group meetings- take advantage and speak to real people and you’ll see how different it can be from one person to the next which can keep you positive. There are a few groups as well on facebook etc that organise socials events (the people I’ve met with MS drink anybody under the table! Ha ha).
It all takes time. Talk about it, chat with friends, laugh about it. Don’t let it be a taboo subject, it doesn’t need to be.

1 year ago

Hi there,

My story is quite similar in that I was recently diagnosed after four or five months since first seeing the GP with symptoms. That in itself is incredible, given older stories of people waiting for up to a decade for a diagnosis. It might seem strange but I took some comfort in researching the world of developments in MS over 40 years. Seeming it in a chronological list helps to see how developments have been really speeding up in the last decade. In January I was referred to a disease modifying therapy group to be confronted by a wealth of medications I could start. In January, it was just too much and wasn’t registering at all. In March I felt ready and began Tecfidera which, so far has yeielded not of the horror story side effects.

My advice for anyone would be to do whatever it takes to get you through at this time. Whether that’s to cut yourself off temporarily, eat tons of chocolate, watch trash TV, cry, tell anyone who will listen. Then you can start to look at the things that ARE in your control. With me, that became improving my diet, organising my home environment. I was initially distraught because I was no longer able to do my daily 1 hour of walking. What I now do, is take 2 or 3 walks of 15 or 20 minutes which I can easily manage. Most important, take the time to be you, and to work out how the real you is going to accommodate this new set of challenges and changes without having to change who you are.

1 year ago

I am one of those people who had symptoms off and on for 20 years and couldn’t get a doctor to take me seriously. They thought I was a hypochondriac even though I had MS in the family. I finally got tested, they were testing for something else and found it. When I found out I cried for two weeks and then decided to go to war with MS. I started treatment immediately, went to a physical therapist for exercises to help with leg cramps and balance. I try to watch my diet and research all of the latest greatest developments in MS. If you have any questions someone on the forum will be glad to help. Potter

1 year ago

Hi @stumbler
Thanks for your reply. I had another “life-changing-reassess-your-life event” with a family member a few years ago and made a lot of big changes then, and I’m glad I’m in the position I am now for this diagnosis to come because I’ve come a long way in that time, not sure I would have handled it well back then! I am currently making a big compromise to get to a point where I can realistically have the life I want and the idea that MS will get in the way does my head in. I think some of the fear comes in recognising that I actually just don’t know who I have around me to help because I have always been resistant to it – it is not what I have based my friendships on. I just keep putting it into the “I don’t need that right now” box and hope I can come to accept it by the time I do need it, and I’m working on that.

I have an appointment in a couple of weeks with MS nurse to discuss any treatments. I am currently not badly effected and I think it is the fear for the future that worries me more than immediate needs.

Thanks πŸ™‚

1 year ago

Thanks @jessvf14 – Yes I think that’s where I am at, a lot about worrying about what will happen and how it will impact on my plans, I feel like I’ve barely even started living my life and now something has come to complicate the chances of me doing that, as if it’s another person I have to consider and take responsibility for rather than a part of me. I suppose getting to a point where I can integrate it with me is the next step.

I have put together questions and done a sort of audit of how I have been and how I am now so I have a sort of baseline to work from and keeping a log of how I am day-to-day. I have read the generic literature they give out about DMTs from MS Society and MS Trust and have a couple of research things but I don’t think I’m eligible for anything at the moment.

Yes I am in the UK, what gave it away, πŸ˜€ ha ha ha! There is a local MS Society branch here, I haven’t called them yet. I am quite scared of going along – as if it will make it more real. I don’t like to admit it but I am also scared of seeing other people who have symptoms that effect them more than mine do because that might happen to me. From a purely practical perspective, things seem to happen most during working hours and I work. I haven’t looked on Facebook yet, that’s less anonymous! I think all of that will probably come when I am able to accept it as a part of me, having reread what I’ve written here it doesn’t sound like I’m there yet!

I have been trying to be more …honest when friends ask me how I am and can say a bit about it being quite up and down, and that right then I might be okay but sometimes I’m not, rather than just say I’m okay. I figure that’s the start of taking them at their word that they want to help because the support I need at the moment is emotional.

1 year ago

HI @vixen

I am also really surprised by the speed of my diagnosis (and clearly yours too!) given the stories I’ve read about people fighting for it for years. I am glad I got a quick diagnosis, I do feel fortunate not to have gone through too much stress over that! I can see how learning about what’s happened over 40 years could be reassuring, I think I might try that, thanks! And thanks for your tips, I think taking time for myself is a good place to start! I’ve never been very good at doing things for myself, definitely one of those people doing things for other people all the time and not doing enough for themselves but I have started to make changes to that. I think you hit the nail on the head saying “Most important, take the time to be you, and to work out how the real you is going to accommodate this new set of challenges and changes without having to change who you are.” that’s definitely the aim.

It sounds like you’ve had a successful time finding a treatment that suits you, I hope it stays that way!

Thanks for sharing your story, it helps to know how other people have made those changes that make it manageable to keep doing the things that matter to you πŸ™‚

1 year ago

Hi @potter,

I can’t imagine what it’s like to suspect you have a condition and to fight for a diagnosis like that, I can definitely identify with the whole not being taken seriously by the doctor, and with having unexplained symptoms for years that, for me, always got pinned on “migraines” until it became really clear that it just can’t possibly be migraines and I was finally sent to a neurologist. Your stamina and fighting force through everything you describe is admirable!

I always have lots of projects on the go, I might have to shove one to make room for Project MS! Thanks for injecting some of the fight back into me!

1 year ago

I’m not sure what to say friend.
I don’t have much to do with people who have ms like me, I’m not sure if I’ve been stubborn or just scared still after having been diagnosed twenty years ago! Silly I know. But I’m here to talk about everyday life with ms. I wish you the very bestest ☺️ I am also a very open type of person so y’all can talk to me about anything from coping with kids to relationship issues… body image issues… whatever. Just happy we have a place to talk for real about all that entails living with ms. Big hugs… Hayley πŸ™‚

1 year ago

Two things, @nicecupoftea .

Firstly, don’t spend your life worrying about things that may never happen!

Secondly, there’s a wealth of experience with people who have had MS for a number of years. Yes, it can be off-putting when you see their problems, and their mobility aids. But, they, like me, have not been able to utilise the latest treatments brought about by advances in medical science.

If it’s of any comfort, I was like you. In hindsight, I’ve now seen the errors of my ways. Don’t make the same mistake. πŸ˜‰

1 year ago

My diagnosis was v similar time wise- first major symptoms march last year, relapse December- tecfidera started 5 wks ago.
I’ve not joined any groups, I’ve had one meet with the ms nurse. I’m v pragmatic, what will be will be, to me there’s no point in worrying about what might be…. because it might not- I’ll deal with it when it does 😜 X

1 year ago

@hayleyjvdm – It’s good to be able to have these conversations, I feel like it is one step towards feeling less afraid of it all πŸ™‚ thanks for your warm welcome!

@stumbler @laineybob101 – Did you already have that attitude towards the future, that whatever will be will be and to deal with it if and when it happens? Or did you have to learn it as a result of the diagnosis?

Thanks to everyone who has responded, it is helpful. I will be spending time learning about medical advances over the last 40 years, and personal development around how to emotionally accommodate my unpredictable symptoms, and accept it as a part of me that I can live with, I had a bit of time after a wobble about my near plans for my career and came back around to f*&# it I’m going to do it anyway, if it doesn’t work out I’ll always be able to do something else, I’ve always been able to make things work in the worst situations. And I will find a way to meet other people at a group, when I’m ready.

1 year ago

I’m a planner and an organiser- I’ve always had a spreadsheet for pretty much everything, then when I was 22 my mum died suddenly, no illness nothing, boosh she went to bed and died- I found her- it was awful….BUT what i did learn from it was there are something’s in life we have no control over- they will happen if and when they want to…. 17 yrs later my ms diagnosis…. I struggled with panic/ fear to start with for the first week or so…. then I stopped reading other people’s horror stories and joined this group-( which is very honest, but not totally full of negativity)… and I kicked myself mentally and decided to get on with it, I’ve a husband, 2 small girls and 3 dogs- I don’t have time to worry- if it’s gonna happen it will x
I guess it’s down to each individual how they deal or cope with it- for me it’s don’t wind myself up about it till it happens…. cos life has a way of throwing way too many curve balls in the mix- u can never plan for them all xx 😘
I hope u find your peaceful way forward, the way U r happy with xx this group is fab tho…. one thing I would def recommend keeping hold of xxx

1 year ago

I can relate very much to your post. I also went through a bit of turbulence in my life when I was first diagnosed almost a year ago. I cried tears, and I felt really sorry for myself. I felt scared about my future too, but I don’t think that fear ever goes away. Take time to process this huge change in your life! It’s ok to have all these feelings and more. It took me about 8 months to accept my diagnosis, but now I have come to realize that being positive, like actually believing in and finding the good things in life every day, is what helps me get through. I could die in a car accident tomorrow, so why spend my precious energy worrying now about the things that “Could” happen in the future?? I might only have a good week or a good 20 years ahead of me, so I made the conscious (and somewhat stubborn) decision not to let MS stop me from being grateful for the life I have, or take away my positive outlook for my future! I will deal with each effect of the disease as it comes, and until then, I just try to live as healthy as I can and get the most out of this life.
I too am quite unhappy about the fact that I will likely need care one day, and it is hard for me to accept help as well, since the role of caregiver has always been mine. I decided to start volunteering with my local MS society in an effort to give as long as I can, so that when the time comes for me to have to take, I can feel better knowing that I gave too. That might be something that helps?
Thank you for sharing your story, and hang in there, You are going to make it through this!!!

1 year ago

Hi, that is a something we all had to go through, some with tears and yet i know some who simply said oh what the hell πŸ™‚ i wouldnt say that there is someone who could tell you how to adjust to this new life conditions. Your body may experience certain changes but if you just think on these concerns you are injuring yourself. Stay optimistic and live you life normally.
Wish you all the luck for the future πŸ™‚

1 year ago

Thanks for sharing @laineybob101 it is striking how often it takes a dreadful thing happening to kickstart positive changes. I am glad I joined this group πŸ™‚

@amberinab I can see it from that perspective too, and when I’m feeling okay I describe it in quite a similar way, no one knows their future and anything can happen any time, and that if I can do all the things I’m doing now while feeling this way there may be a period of time where I feel better. I think that are just times where maybe I realise another thing it impacts on and then feel worried or upset, but that is probably just the way it is and that is okay. I have been volunteering for years, I love it, I think it does help to know that I am helping others with something else that is close to my heart. Thanks for your reply, it does help to hear from other people with similar experiences who can share their wisdom to a new person!!

HI @matic91 it is definitely true that everyone takes it differently and that there is no one person who can tell me what to do to adjust, and that even if they could it would still be for me to actually do it. That’s why I wanted to hear about other people’s stories, not that I would just copy what they’ve done, but so that I could read stories that show that it is possible, and to make a connection with the group. Thanks for your insight, and good vibes! πŸ™‚

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