Last reply 3 years ago

Any advice on how to deal with this?
I’m currently not diagnosed but having ALOT of problems which make it more and more likely.
The issue I’m having is looking forward to the future or planning anything, I also find it hard seeing other people get on with life when I’m struggling.
On top of this my other half has decided we should postpone wedding and having more children, after providing everything for 7 years it now seems when I need help everyone goes running. Sorry to have a moan just wondered how everyone else had coped?

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3 years ago

@krisp , relationships aren’t easy. It’s hard for a partner to watch us struggling and it does make you reconsider your future.

MS, or whatever is bugging you, is our personal condition, but it does affect our nearest and dearest too. Our journey to manage this, also needs to be their journey too.

But, having said that, our future is unpredictable, but isn’t everyone’s. Nobody knows what tomorrow is going to bring, so we’re no different.

Shift.MS has adopted a motto for this site :-

There’s always light at the end of the tunnel. 😉

3 years ago

Thanks @stumbler
It’s just a bit of a kick in the nuts, I’ve always been the lucky bloke had a really good life so far with business family etc and then this, I just wonder sometimes what I did to deserve it? And the fact it may affect my family life and relationship is something I’m struggling to come to terms with right now

3 years ago

@krisp , I know you’re not presently diagnosed, but you seem to have started the emotional journey from diagnosis through to acceptance of the situation.

This journey has several defined emotional phases, as follows:-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

And it’s not a direct journey either. Expect to get lost en route and turn up at a phase that you’ve already passed.

But, it’s not unusual to go through the “feeling sorry for yourself” stage, where you pose the question “why me? What have I done?”

So, be patient with yourself.

What I can say is that I told my wife to leave me on diagnosis, close on 20 years ago. We’re still hanging in there.

But, a situation like this does give you an opportunity to re-evaluate your life and the values you place on things. You learn what is truly important and what isn’t. This in itself makes you a better person.

So, why do we get MS? Because we can handle it! 😉

3 years ago

Hi @krisp it’s very frustrating this disease I have lived with for over 20 years .

I have been challenged in many ways by it . It affected my schooling and my grades . My memory failed me a few years after the first attacks .

In the beginning of the attacks I had them and although brief this wasnt to remain . I had about 2 attacks a year after the initial big ones .that wad early teens to late

Then the tremor back pain memory fatigue and relapses . The ones in my 20s always lasted about 6-8 week’s but we are talking at least 3 months to be fully functioning again . That’s why this disease as the name RELAPSE Remitting .

It’s very confusing to the outsider why you can be so ill then almost so well again . Even confuses the ms patient .

Days weeks your at the gym living your life . Out with friends going for walks . Maybe a night out . Off to the movies . Working again . Feeling pretty normal .

Then the relapse you go from being one person that can do it all . Too a person that can hardly move around there home and it can totally disable you in every way .

So how does it look one min ok for months then next …..

Well in my 20s so I’ll in my bed for 3 months at time suffering terribly and trying to reach out to my medical team for help . With no help what so ever . This is the reality I have suffered .

Now coming back to relationships this disease can look like all sorts to the outsider

1 it can make you seem depressed . Wow of course your depressed by our life has gone from being able to not able .

2 you can appear crazy because the symptoms are crazy . Unless u have ms don’t try to tell me show it affects me .

3 Anxiety oh that’s a good one isn’t it .

4 lazy this was one I hated . My parents thought I was lazy cause I was sleeping all the time . Now i was suffering really bad and bidding know what else to do . I was in a lot of pain discomfort and the fatigue unbearable.

5 Not being believed very harsh and cruel especially when your suffering

6 Not being able to understand the disease yourself because it’s so unpredictable.

Now to the part of relationships

You miss out on a lot of outings cause u just don’t feel well . You look ok on the outside so you must be lying .

You can do some things one day and not the other . Gets the outsider thinking your making it up . If only we were . I would give anything not to be like this or have this illness.

Some friends have came and gone in my life . So be it . Some understand some don’t .

It’s hard for people to even scratch the surface of ms if they don’t have it .

You become a bit more mentally slow at times . You lose things like keys much to your frustration.

It’s not just what your going through this is bits partners see . They also see the distress and struggle .

They get angry cause you can’t do the sane as you used too .

In turn you feel frustrated with your own body the fact it’s not the same as it used to be .

Will think of more soon getting fatigued typing 🙂

3 years ago

And yes ms can be lonely but I could have more company but I enjoy my time alone also . I put my little energy into my family and also trying to get help or trying to find a medication or anything that will help my disease

So I can enjoy precious moments with them . I don’t like my kids seeing me so debilitated and unwell . My little girl only 2 years . Said mummy why you always tired . Only two and asks me that . Oh that broke my heart . I Said mummy always gets tired and unwell but she gets better again . That’s they way mummy has always been x

3 years ago

I take my partner to most of my appointments….it saves me having to repeat everything. And if he hears it from a Dr then he knows that I am not just making up all of these strange symptoms. I have asked him many times if he still wants to get married (we are planning a wedding for August) and he says it doesn’t change anything. But getting him to understand my struggles is hard, when I am exhausted after working, school runs, house work I can see that it may look like I’m being lazy but I need him to understand I am not. So this is what causes problems in my relationship.

But MS or not there will always be challenges in relationships so don’t think to much into it. Stress is not good. Maybe do what I do and take your partner with you to appointments as they will also need to understand the disease as much as you do!

3 years ago

Yeah holly that’s a great idea, my only problem is my neuro told my partner right now all it can be classed as really is an isolated incident as there’s no mri proof of any issues yet, so she’s auestioning everything I fee I think lol

Enough of me moaning though I need to be strong to beat this

3 years ago

@krisp , if it is MS, which is a big if, then it is a formidable enemy! So, it’s more a question of managing it, rather than beating it. Although, with the introduction of Lemtrada as a treatment, it seems that management might be getting the upper hand.

When it comes to trying to explain problems to our partners, this previous post might help you :-

I know it’s not easy without a firm diagnosis. All these intermediate conditions, Clinically Isolated Syndrome (CIS) or Transverse Myelitis, to name but two are not very helpful as there is no treatment path. I’m surprised that no-one has come up with the term “Singular Sclerosis”, which would cover it! 😉

3 years ago

I agree it’s managing I am going to try not beating it, I don’t want to tempt it to be nasty lol

I think It is horrible with the not knowing etc but I’ll gladly stay with just these symptoms for the next 40 years and some. That and I’m holding on to the glimmer that it might be something less scary, it’s not looking that way though

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