Forum

Not sure who to turn to

Hi everyone. I’m new to the forums and have newly been diagnosed with ms after a long time of many hospital stays. I am now on treatment but I’m really struggling emotionally and physically very fatigued and in a lot of pain. I suffer weakness down my right side. I feel I’m a burden to my friends and family and am struggling especially with how to tell my partner how I am ferling. He is very good to me but can’t help feel I’m letting everyone down in a way. I’m not sure if joining a group would help or not. Does the emotional side start to ease once you come to terms with the diagnosis or is this something I’m likely to just have to accept will be part of it to?

Hi Loulou,

Getting a diagnosis is a double edged sword. At least you know what is causing all your symptoms but then you have to deal with everything it throws at you and try and get your head round it too.

I think it can take a long time to come to terms with the condition. Everyone is different.

This website is good for support and advice. Maybe post on the newly diagnosed forum too.

You’re not letting people down and you’re not a burden. Everyone is different and everyone needs support in different ways.

Stay positive and stay strong.

Jen x

Hello, try to relax and give yourself time to adjust to your diagnosis. Don’t be too hard on yourself, it’s a big change! It took me about 2 years to come to terms with it, but then the fog lifted and I was able to get on with my life. I’m 5 years diagnosed and coping much better…life is different but it’s definitely not over! Take it easy and be good to yourself xx

1 Like

Hello Loulou

Being given a diagnosis of MS is a real kick in the teeth. Don’t expect to come to terms with it and stop feeling emotional about it in weeks, or even months. It is hard to get your head round. Acceptance is something that is very difficult to achieve.

And it is quite common to feel that you can’t keep on leaning on your partner and family.

Feeling emotional about MS won’t go away overnight. Feeling bloody furious about MS screwing up your life won’t go immediately either. But allowing yourself to feel crappy about the whole thing is OK.

If you feel you need an outlet for your emotions, come here and let them out with us. We’ll get it, and will try to give you the support you need.

Sue

1 Like

Yes it was a relief to know I wasn’t imagining the symptoms. Thank you. I am trying my hardest to stay strong. Louise x

I’m only a couple of months so hopefully I start to pull myself together soon before I drive everyone crazy lol. Life is defo different but I hope like you I learn to adjust to that. X

Thank you. I’m going through the anger stage just now as well. Its such a horrible unpredictable illness for us all. I’m glad to know that I can come on here if I need any help. Louise x

Acceptance, anger, coming to terms with, grieving etc. Yes, these terms have some relevance but the bottom line is when we get m.s. we are dumped on from a great height and life is going to be harder. I have never felt that I have reached a stage where I am sort of at peace with having m.s. For me it has been a case of trying to make the best of a bad job and if I am honest I’ve always been pi**ed off about having ******* m.s.!

It’s a horrible thing to have. I just need to get to grips with making the best of it. I’m 34 and I’m so angry that I can’t do a lot of what I used to. Suppose it is learning to enjoy the things I can do instead of what I can’t

Let me know if you find the answer to living life rather than just existing. Cheers.

Louise - best thing you can do is talk about it.

Start with your partner, then go on to anyone that you know who will listen.
When you can do it without getting emotional, then you are starting to accept the lousy hand that fate has dealt you.
The other bit of advice is to do whatever you can while you can still do it. The day will come when you no longer can - it may be next year, it may not be for ten or twenty years (and no-one can tell you when).
And remember that all of us here have a little bit of specialist knowledge - all you have to do is to ask.

Geoff

Thank you. The not knowing part is difficult and the fact it is so different for each of us. But good advice on doing what I can now. Louise

Louise, my advice is to ask your partner how he feels about things.

What does he need? Does he want to come with you to all MS appointments? Ask questions of the neuro/ms nurse? Attend a local support group? Join us on the forums?

That way it will guide you as to how to handle things.

And make sure you tell him how you are feeling/coping etc. Tell him if he’s being too solicitous - I had a month or so of being grabbed by the arm every time I stood up! I had to tell my husband to back off a bit and let me do whatever I was able without his help!! If I needed help I would ask for it.

We had to have harsh words on both sides before coming to an understanding (although I still cringe when I remember my first neuro appointment, I asked my husband if he had any questions for the neuro and he came out with one about the car park charges. I didn’t know whether to thump him, laugh, cry, or sink into the carpet).

My daughter (adult and no longer living at home) is very levelling and tells it like it is. She gives me lifts to my mom & dad’s every month or so. She put up with about 12 months of me constantly apologising for taking up her time till one day she got very cross with me and said if I said sorry one more time she would never come home again!

I’m sure you’re not a burden and you’re not letting anyone down.

So, do what you can, rest when you can, try not to apologise for being unwell. You will find some level of acceptance, as will those around you.

AngC

I suspect that Dr Geoff’s advice is the best so far. Do everything that you can while you can. The day could come that you cat, so make the most of everyday.

That doesn’t mean you’re not entitled to hate having MS. It doesn’t mean you have to accept the shi**y hand you’ve been given. It simply means make the most of what you’ve got while you’ve got it. Live for today and let tomorrow look after itself (whilst ensuring that you take as good a DMD as you can, keeping fit, eating well, taking vitamin D etc).

Sue

1 Like

Aww thank you for that. My partner is constantly asking if I’m ok. Drives me mad a bit but he means well. He will only come to apps if I feel I need him there. But he won’t talk about it and how he feels about things. Something I do all the time is apologise for being this way feel like it’s my fault but I know nothing I can do. I’m slowly learning to rest as much as I need to which just now feels a lot but I’m also pushing myself to do as much as I can on my good days. Louise

I am going to make everyday count as we don’t know when things could get worse. I worry way to much about the future and need to stop. I’ve just started plegridy on Monday. Consultant wanted me on tecfedera but I decided against it. Louise

You’re getting some good advice.

My tip tip is to keep an MS diary.

New symptoms, how long they last. Any appointments, with who and what was said. Any medication.

Really useful if you have to fill in a form for blue badge or PIP. Mine is invaluable.

Jen x

And if you’ve got a useless memory, a diary is absolutely essential. I’ve been keeping mine for 6 years. And there are times when I just don’t know when something happened so I check it all the time. Mine is a diary app so I can label different entries with specific tags so can bring up for example a list of entries labelled UTI, or specific symptoms.

Sue

That’s a good idea. Something I never thought of. Louise

I love this thread. This is how I feel every day. I saw the MS Occupational Therapist about something else and I told her ‘I hate MS’.

Yes I’m angry, I’m frustrated, I blame things, I feel guilty, I feel that life has dealt me a shit card. I was diagnosed less than a year ago.

She suggested that some counselling might help!!

Am I supposed to accept having MS and get on with every day life without any emotion?