Forum

who's the sick one here?

Hi, this is my first post after only being diagnosed a week ago. It’s a bit of a rant and a bit of a request/ cry for help.

I’ve been telling friends and family the news of my diagnosis. Most were aware of the tests I was having and my consultants suspicions, which were 100% correct. So why am I spending so much time making sure everyone else is ok with what’s happening to me?

I was really glad to be able to put a name to what has been happening to me and now I’m keen to get my symptoms under control. Hard to do when others want reassurance about how it will effect them. How do I deal with that? I feel like I have to play down how I’m feeling and sugar coat it. Not easy when the feteuge is so bad. I.e. it’s 3.43am and I’m still up. Tomorrow I’ll crash at some point and awaken feeling awful and unable to function. Just as well I’m off work this week anyway. I just want to finish up some stuff to reduce the pressure on my time. But I’m spending so much time on the phone and visiting people. I really don’t have time to make them feel better right now. I’m still trying to get my head around it.

I just don’t think there is anyone I can talk to about it. No one gets what the feteuge is really like. They don’t understand how one week a leg is weak and tender and the next week it’s an arm. Even though they know what it is now, people either think I’ll be in a wheelchair next week, don’t get that I can’t domit all anymore or that we can pray it away. I’m glad their faith helps them, but I’ve never been religious.

In a way it feels like it’s my fault. Before I knew I had MS, I tried to just get on whith things so I didn’t ask for help at home. Now, my family seem to be piling on the pressure.

What do I do? I’m feeling so overwhelmed and emotional. It’s only been a week. I’ve yet to get the date to even meet my MS nurse. But I’m curently helping with three weddings, starting a business, building a website and working full time. There are so many balls in the air. I just want to run away so I can work out where I go from here.

And now it’s 4.13am and I’m still wide awake.

Can’t offer any practical help, but my thoughts are with you.

Zippy

I’m sorry you are under such pressure right now - the only thing that comes to mind is for you to be a bit rude and tell people that you don’t have all the answers - you need time for yourself right now, even if its only a couple of days - switch the phones to voicemail, don’t reply to email immediately, don’t go visiting - and stop trying to reassure everyone. You need some ‘alone’ time to react to your dx - to scream at the top of your lungs, punch 7 bells out of a pillow, sit on a park bench watching the world go by, or to bawl your eyes out for an hour straight - whatever it is that you need.

Blue Libran wrote:
“I just want to run away so I can work out where I go from here.”

First, you need to figure out where you can run to. Then you got to decide that there is no point in running.

You tell people “Yes, I am going to get worse - but no-one knows how bad, or how fast”.
Then you do what you can while you still can.

Just after the onset, I did a trip to Prague (NATO Conference) and walking on the cobblestones in the Old Town with legs that were numb up to the hips was an experience. The next year I did two trips to the US (for conferences), one of which involved a lot of travel as I detoured to see family as well. The year after, I was in hospital having IV steroids, and someone else was delivering my conference paper in Washington.

So I repeat: Do what you can while you still can.

You can be positive about your life, or you can give up now - but it’s your choice, right up to the point where you have no choices left.

Geoff

2 Likes

Piling on the pressure? Well, of course they are! When a service-provider goes faulty, his/her clients start to panic about how they are going to get their needs met now, and what exactly is the service-provider going to do about it!

I’m half-joking and exaggerating to make the point, but I am sure that you know what I mean. Also, I am using the term ‘client’ in its broad sense, to cover family members, commercial customers, employers, work colleagues and friends who are accustomed to help and support. I’m not saying that everyone is wholly callous and self-centred. Just that, when people feel threatened in any way, it isn’t always their best selves that you hear talking. (I have been guilty of this myself, sad to say.) Of course people will be concerned for you as well, according to their relationships to you and their own natures. But that isn’t always the first thing you hear, alas.

Try not to take it too personally. Everyone in your circle will be a bit at sea about all this, and will be scrabbling around, wondering how to react and not always getting it right. And those close to you will be struggling with some very difficult emotions, and we do not always look our best while doing that. I hope that you will soon find that those closest to you (and whose support you need most) manage to set aside selfish preoccupations and turn their attention to you and your needs. But that can be a messy and slow business, alas.

What I will say is that it can be quite a healthy distraction, concerning oneself with the worries and fears of nearest and dearest at a time like this. Saves a person from dwelling on the troubling news about his/her health, and allows things to sink in gradually – if only because the person with the dx doesn’t have time to give MS his/her full attention! Sometimes that’s no bad thing.

I am sorry about your dx.

Alison

Hi, you’ve had lots of wise words already & all I can say is make time for yourself. Being newly dx is pretty scarey, I expect your head is buzzing. Do you have just one person that you can scream & cry with, somebody that can help you to get your head straight? Take time away from trying to explain to everybody, you are the important one now. Rant on this forum whenever you need to, that’s why we’re here.

Hope you’re able to see an MS nurse soon, they can be worth their weight in gold.

Rosina x

1 Like

Hi all,

Thanks so much for your comments. It may sound strange, as some contradict others, but they have all been a really big help. I might not be sleeping well yet ( it’s currently 3.35am and I’m back to work tomorrow) but I got away for avfew days and now I’m screening my calls. I’m doing a lot of list making and pkanning things I want to do. A kind of MS bucket list and generally getting into a much better head space.

Those who have been used to me sorying their lives out will just have to learn to stand on their own two feet fir a change.

And most of all it’s nice to know I’m not alone, you guys are there too.

Thanks

Simone

1 Like