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Help, feeling lost!

Hi everyone,

My name is Simon I have been with my fiancée just over a year and a half, she was diagnosed with MS back in September of 2016. Since this happened it made me realise that I want to be there for her forever and so at Christmas last year I proposed to her, we’re getting married in two years!

I thought I was dealing ok with everything but recently I have been feeling lost in myself, getting quite emotional and distracted at work, making myself ill for no reason at all and worrying about everything. This is not the normal me as I am usually quite relaxed.

Has anyone else felt like this? Could anyone offer me any advice at all?

Thanks in advance Simon.

hi simon

i was 50 when i was diagnosed.

my husband who i have been with for 37 years was what i now realise to be upset.

he doesn’t show emotions but is more practical.

he’s a born fixer of broken things but he couldn’t fix me.

what matters is that i know he loves me very much.

it sounds like you are feeling the same.

as for worrying about everything, once you start to worry about one thing it escalates, so work on this.

wishing you both lots of love and happiness

carole x

My wife and I are both early 50’s and she has recently being diagnosed with MS. I am struggling to come to terms with the uncertainty of what the future holds. I am a born planner and fixer and feel so useless and scared as I don’t know what to do and am still trying to hide my fears and worries from Lisa my wife as I don’t want her to worry about me as well as having to deal with the MS diagnosis

Can’t really offer much advise but i am another partner of someone with Ms( got verbal diagnosis in July but still not 100% formally diagnosed).

I love Carole’s answer about her hubby being a born fixer,i am more of a bodger but think what she says sums up quite well how i feel. Cable ties, bits of string and some fibreglass ain’t going to fix her so i am lost!

When she had a sudden episode of severe problems early this year and MS was mentioned she told me i should go, but i wasn’t having it and told her i took the old "in sickness and health " seriously,i know 100% if it was reversed she would be there for me!

I do my best to support her emotionally and try to go to every appt etc with her ,on the whole i try to be as positive as possible.But as we have delays, set backs etc it sometimes hits me hard. As i say she was pretty much diagnosed in july.We then went for 2nd appointment expecting to discuss DMD’s only to find neuro had left and a more junior colleague in his place and still no diagnosis and MRI still not viewed.Seemed like a total waste of 6 weeks and i felt really low(depressed?) for a good couple of weeks, When i am in that state i don’t really discuss my feelings too much as i think i would struggle to verbalise them without making her upset more.Once they have settled a bit i do think its important to discuss how it makes me feel rather than build it up too much.Haven’t really got anyone else to talk about it with!

Hate seeing her in pain and struggling so much but sometimes i can go to work and be really busy and put it out my mind for most of the day, other times i think continually about everything thats going on and let it affect me more than i would like.I think about things like should we spend everything and enjoy life as much as possible whilst we still can or do be sensible and save for the future just in case. Its hard to stop it(ms) being the only topic of thought and conversation!

Ollie

Hi Ollie

Thanks for taking time to post a reply.

Lisa also got verbal diagnosis in Aug this year after doctor sent her for mri scan that confirmed doctors suspicions of MS (lesions between 2mm and 7mm)

we got referred to a neurologist in September who requested further MRI Scans and a lumber puncture and we are due back to see him in Jan 2018 to discuss the results

Looking back now with the knowledge of Lisa about to be formally diagnosed with MS we think she has probably had MS for approx 10 years. The fact that her balance and vision over the last 6 months has dramatically deteriorated and seeing a new doctors triggered the request for a MRI.

How will she deteriorate physically and mentally is so scary for all involved especially my lovely wife, Lisa

cheers again

dave

Hi Dave,

That does seem to be the way it goes,its only with hindsight but looking at my wifes medical history there was Optic neuritis in 2002 a couple of years before i met her(.This is often a first symptom i have read), but wouldn’t be classed at that point as Ms as one episode wouldn’t fulfil the Mutiple criteria?

Nearly 2 years ago(pretty much to the day) she suffered an injury at work which caused shoulder and back pain scans showed nothing, a physio who wouldn’t really touch her suggested it could stem from neck.Eventually she had neck mri which apparently showed damage to spine and nerves here.Not sure but i think the suggestion now is this was possibly a misdiagnosis and could be ms signs also.I noticed her stumbling and hanging onto things about sept last year but we both thought it was pain killers making her dopy! she got a bit worse stumbling more often and took to using a stick as a safety measure if i wasn’t there to grab.

Early this year her symptoms suddenly went crazy one day and after ringing me got my dad to take her to docs(stopped driving ages before).Dr seemed to be on ball and mentioned Ms,ruled out other things with blood tests etc and arranged brain mri,which showed lesions. She has improved since that major episode but her mobility is still poor even with stick,she too has had recent vision problems,poor memory,very fatigued etc.Think she hides a lot from me if she can get away with it!

About 6 weeks ago she fell in kitchen whilst i was at work and couldn’t get up for quite a while which scared her but to take the positive view she is now more accepting that she has to be careful and can’t do everything and less inclined to pretend everything is ok!

Ollie

Hi Simon.

Congrats on your engagement to your loved one. I am so pleased for you and wish you so much happiness in your beautiful marriage and relationship.

I am not experienced with MS but I did look after my father for many years, who suffered a very different illness for many years. You are right, once you start thinking about the whole concept of the illness, it can pull you down and send you down a spiral of stress and worry and can completely drain you. This feeling will go away in time, as you will slowly adjust and get over the shock of whats happened, and what the future holds.

I found that the best way to block out these negative feelings was to create fun and memorable times with your loved ones, something you will both enjoy and lift your spirits. Then these new precious memories will fill your heart and mind, and slowly override your stress and worries and you will be more relaxed and stronger and think of all the positive, fun things you have done together. Its important you keep busy …at work and at home with your fiance. Make it count and never look back, live for today and keep focussed on how lucky you both are to have found each other.

The build up to your marriage is a perfect way to celebrate you life together, and the fact cupid has brought you both into each others arms…Simon, I wish you so much happiness and enjoyment preparing for all the exciting things that are to come.

1 Like

Hello - I’m also fairly new, the MS diagnosis being recent and the lovely Wife being not too good for the past year.

First off - totally understandable being anxious - be weird if you weren’t! Generalised anxiety it seems to me is pretty much par for the course. And it then impacts on everything else, work etc. I find the massive stress of not knowing what’s round the corner the worst - just rubbish! But hey, that’s how we MS carers roll eh?

Second - congrats on the engagement!

Third (I like things in threes) - you are so not alone. Use the forum, ask for help, realise that there are others out there willing to lend an ear, be a virtual friend and empathise with you.

Until next time - good luck!