Hi everyone,
I’m feeling quite low at the moment, which is very unlike me. Normally I’m a bit like Mrs Claus in the run-up to Christmas - full of excitement, planning, traditions, and trying to make the season magical for the kids. But this year I just can’t seem to find the spirit, and I think everything has felt different since my diagnosis in November.
What’s made it even harder is that the day we completed on our first and dream home was the same day I got my scan results. We’d worked so hard for this house – a three-storey Victorian place we absolutely love – and what should have been one of the happiest days of our lives is now completely clouded by the diagnosis. It feels like MS has already attached itself to something that meant so much to us.
I’ve been trying to carry on as normal and keep things steady at home, but the kids have started to notice that something is off. I haven’t told them anything yet, and that feels heavy in itself.
Today I had a phone call from the MS team to arrange a home assessment, and I think that’s what really tipped me over. Since the diagnosis, people keep gently saying I need to “prepare for the future” and think about our home. I know they mean well, but emotionally I feel like I’ve barely had time to process what’s happened, let alone start planning for what might come next.
Right now I just feel sad, overwhelmed, and a bit robbed of the joy I expected to feel at this time of year.
I suppose I’m posting because I don’t feel very Christmassy, very strong, or very positive at the moment – and I wondered if anyone else has felt like this early on. If nothing else, it helps just to say it out loud to people who understand.
Thank you for listening 
2 Likes
Hi there,
I just wanted to say that I can relate to much of what you’ve said. You are not on your own.
I was diagnosed in September (so a little earlier than you I think?) and I have nowhere near processed this! And I am in therapy and a therapist myself, so lots of opportunities to process. I think it will take a long time to come to terms with it, and then something will change eg a possible new symptom or something and then there will be more processing to do.
It’s ok to take your time with this, it can’t be rushed. There is so much to learn and to feel.
I think that the people talking about planning for the future are not being helpful (though I understand they are trying to be helpful). You don’t have to think about that stuff yet. You will get to it when you are ready.
And with the new very effective drugs available, it might mean that any home adaptation needs are many years off.
Are you having many symptoms now? And are you on any treatment?
I hope it works well for you and you remain as well as you can for as long as possible.
Just as an aside - you mentioned having kids and not having told them yet. When you do decide to tell them, you might find some of the free info booklets from the Ms Trust helpful. There is one about talking to kids about MS, and two aimed at children - older and younger.
Go gently.
Alison xx
2 Likes
Hello @fifilamore from a long time ( 19 years) since diagnosis fellow MS person.
There is a lot in your post. @lnp8acr is quite right in saying that a diagnosis is a lot to deal with and many people talk about going through a process of grieving: grieving for the loss of your imagined future. It took me the best part of a year to come to terms with it.
Can I ask what your diagnosis and symptoms are? I’m asking partly because of your comment about someone coming round to do an assessment on your home. After years of relapsing remitting MS I can still walk ( admittedly with some difficulty and not very far) still take care of myself , do my share of the housework etc. We live in a bungalow which helps but I do go up and down the stairs to the loft conversion.
If you can then be kind to yourself, don’t let your mind rush ahead and get fearful of an imagined future and give yourself time to adjust .
Very happy to answer any questions you might have
3 Likes
@lnp8acr @Hank_Dogs
Thank you both so much for replying, it really means a lot.
Alison, what you said about processing really hit home. It’s comforting to hear that it’s okay for this to take time and that it’s not a straight line. I’m also really grateful for what you said about not needing to plan everything yet - that’s been weighing on me. And thanks for the tip about the MS Trust booklets, I’ll keep those in mind for when I’m ready.
To answer your question, my symptoms have been pretty mild so far. Looking back, I think it started around May 2024 with a heat sensation in one leg, then earlier this year I had numbness in my face, which led to everything else. I’m not on treatment yet - I’ve got my first proper appointment with the MS team coming up.
Hank_Dogs, it really helps hearing your experience after so long with MS. I think the home assessment might just be standard practice where I am, but the whole process from referrals to scans and results has been a bit of a whirlwind, so I’m still catching up with it all.
Thanks again - it really helps to hear from people who get it 
3 Likes
You’re very welcome @fifilamore, I am glad to be of help and happy to keep chatting and to answer any questions / share experiences if you would like to 
There is quite a lot of information available on this website and the MS Trust website about the different treatment options you might be offered. If you feel up to it you might choose to do a bit of reading up on it before your appointment with the neurologist. It can speed things up a bit, if that is a concern for you. You should also get referred to an MS nurse who you can ask any questions to and discuss treatment choices with too if you want to. I think the process is a bit different in each hospital trust.
Sending a gentle shoulder squeeze of solidarity, if you would like one.
3 Likes
Good to hear that your symptoms are pretty mild at present. Looking back my first symptoms were probably numbness and tingling on one side of my face . I thought it might be a palsy or something like that . My GP mentioned the possibility of MS and suggested that we keep an eye on things. The tingling/ numbness faded but the clincher that resulted in the diagnosis of MS was optic neuritis and losing most of the sight in my right eye ( the sight returned over a period of weeks but isnt 100%).
I carried on working for 6-7 years after the diagnosis ( I can’t remember exactly how long ) and could easily have carried on for longer but the organisation was down sizing a little and offered a pretty generous voluntary severance package - too good to ignore so I retired early and just for example : got married, did up my house ( I was a keen DIYer and e.g clambered around the roof replacing ridge tiles) and carried on with a pretty normal life until some years later I began to experience problems with my right leg and walking ( and now 71 there is no way I would risk clambering around our tiled roof although I do get onto the flat roof of an extension !)
I must admit I was surprised when I read about the home assessment and wondered if you had some rare very rapidly developing MS . With luck and especially with the more recent and effective disease modifying treatments it should be a good few years ( maybe a long long time) before you even need to start considering the possibility of changes at home.
Do take time to adjust to the shock of the diagnosis, read up on MS and the different treatments and I do recommend looking at what you can do to help yourself by ways of diets, exercise and in effect keeping a calm mind and body including the immune system through mindfulness/ meditation.
Very very rarely is MS a fast developing condition so give yourself some time to consider how best to tell your children . I didn’t have any noticeable symptoms for years and e.g didn’t tell my parents or sisters for ages - in fact my mother died blissfully unaware of my MS.
I’m no medic but I bet you are going to enjoy many happy years ( and Christmases) in your new home
3 Likes
That sounds like a very difficult time for you – I am sorry.
Everyone’s MS is different, and none of us knows what’s around the corner. What I can say with my fingers crossed behind my back is that I have had highly active RRMS – very well controlled with drugs for the past 12+ years – since 1999. We moved into our dream house four years ago and it’s on three storeys too. In time that may turn out to be a bad decision but for the moment we are loving every minute of it. admittedly, we were cussing ourselves up down and across when I busted my knee last year, but we managed.
I don’t know what your situation is and I’m sorry if I’m speaking out of turn, but I just wanted to say that some things aren’t quite as black as they look at first glance and to hope very much that you find the same
I hope that things settle down for you very soon and that you start to feel better and stronger and more positive about the future.
3 Likes