My first question - work

[HollyParker]

Okay, so I haven't been diagnosed yet. I have a mass on my forth ventricle that was described as a lesion, and I've just been referred back to neurology for more tests as, after ruling out other things, my GP (who is very interested in neurology herself) thinks I could have MS.

 

What ever it is, I'm definitely having some sort of attack. I've always hurt and had symptoms but since Saturday it's been unbearable. It was really warm on Saturday and I was in the sun a lot. I know the heat affects me.

 

So, aside from the usual pain and such, it's the exhaustion that's getting me. I haven't done anything yet I just feel no energy.

 

So, I run two businesses. I'm a private tutor (which is great because I work in the evenings). And I own a company that makes resources for maths teachers. I'm trying to make new stuff and I've sat here for a few hours trying to force myself. I've done maybe 1/8th of the work I can normally do when focussed. And I've done nothing since Saturday. So I'm very behind on the work I wanted to get done.

 

Please tell me this is temporary.

 

And, if this is MS, well, am I doing more harm?

 

Basically I am someone who keeps going. I've been known to be in tears from pain but still working, crying while I carry on writing because I want to finish what I'm doing. Even though I make slow progress, and stare at the screen for half an hour doing nothing, I'll still try to keep persevering.

 

Is that the wrong thing to do? I've noticed a lot of the symptoms come on after a busy month or so. But I can't afford to keep taking whole days or even weeks doing nothing. But I also need to pace myself, and I don't want to find out that my pushing through might actually be making things worse.

 

Just wondered how others cope, and whether you still work?

 

 

[Scully]

I Hello Holly,

 

If it is MS then anything you do, won't necessarily make it worse, although it could make the symptoms worse, such as fatigue and pain.

 

I also suffer a lot of limb pain, mainly legs, at times I'd cheerfully have my left leg removed it's so bad, so I can relate to that.

 

Heat sensitivity is often related to MS, for me the humid warm weather has a real effect...keep cool, and limit or avoid getting overheated if it makes it worse. Not ideal I know, but, needs must.

 

It is a question of pacing yourself, and making choices.

 

Have a read of this blog entry I did some time ago, it has helped lots of us understand this 'pacing' and listening to your body a bit.

http://ms-people.com/forum/blog/10/entry-240-if-my-ms-could-talk/

 

There is also something called the spoon theory. It's on here, I'll look it out.

 

Here is the spoon theory. My own MS nurse took a copy of it, and gave it to all her patients! It's actually written for people with Lupus, but relates to MS and other conditions equally well.

 

http://ms-people.com/forum/topic/3645-the-spoon-theory/

 

A bit of bedtime reading for you !

 

Scully

Edited 11 May 2016, 7:26 pm by Scully

[HollyParker]

Ha. I love that. Although I don't know for certain if I have MS, I definitely have something and that explains in so well. Admittedly I don't listen to my body, ever, and end up burning out. As a type one diabetic, I then find that my sugars go crazy. And I've always assumed the long recovery time was down to that, or just normal burn out. But it happens far too often and lasts far too long to be normal, even for a type one diabetic.

 

I wkll look at that spoon thing. Thanks. :)

 

I'm just really scared that one day I won't be able to work any more. Because I really teally do love my work.