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I feel so guilty

So I was diagnosed with RRMS 6 years ago, had symptoms for 2 or 3 years before that.

My last MRI showed no new lesions but I’ve had new symptoms which come and go. Specifically numbness in my hands, burning in my feet and vibrating legs, occasional tightness around my middle and fatigue. Lhermitte’s sign is always there. My MS nurse said I’ve had no relapses.

I can’t get through a full 5 days at work and have had a lot of time off sick. I feel so guilty and anxious because my mind wants to keep going at full speed but my body won’t let me.

My sister in law also has RRMS and is declining despite no new lesions. I asked my MS nurse why and she said that the progression is around old lesions. Does this make sense to anyone? I find it all very confusing.

xx

Loublou

Anxious is understandable and can be seen as reasonable, but in my opinion you should never feel guilty about any aspect of your condition. I think you may be having another emotional response but you have called it guilt. I and many others are regularly let down by a faulty body and can have many responses. It is good to know that your mind still expects what up until recently were the “normal” capabilities and responses. You now have a tricky new learning path and to try and work out which bits you need to fight, which to let go and accept. I know this is tricky because after 27 years I still can get things badly wrong.

As long as you learn to listen to your body and to prioritise how you use your valuable energy you wont go far wrong.

Good luck

Mick

Hello Loublou

Mick is right, health is something you shouldn’t feel guilty about.

And if you’re really not well enough to work, then basically you have no choice. Fatigue is no joke and a full time job is hard on the body when you have MS.

Regardless of actual relapses, as time goes by, the damage done to your system leads to disability progression. This isn’t the same as disease progression, ie moving from RR to SP. But the damage to your nerves can’t be fixed. We simply can’t fix the myelin that is damaged through old disease activity.

So perhaps you need help with your work/life balance. Either through Access to Work, enabling you to work a bit easier, or perhaps by cutting your hours down?

Is this possible with the work you do?

Sue

Hi Loublou,

I looked at another post you wrote a year ago (24 Aug 2017) where you told us that some of your colleagues weren’t at all supportive. I think Mick’s reply was very perceptive; that it’s your company that is making you feel guilty, or to quote your own statement , “a corporate environment where everyone is just in it for themselves.”

You said that HR was very supportive last year, perhaps another appointment with them might help?

Best wishes,

Anthony

I have recently been pressured to go down from 5 days to 4. I really want to work part time, the fatigue is making me a total wreck. But I wasn’t ready financially, I had applied for PIP and wanted to get that in place to cover my lost earnings. Of course I was refused PIP, according to the assessor I’m not effected by MS in any way, I scored nil pointe! Anyway I’d already agreed to go down a day because I couldn’t take the pressure anymore. Now I’m stressed out about my finances and it’s making my MS worse. I used to feel bad about having time off but after the Way work has treated me. I don’t feel guilty at all.

Hi Loublou

So much of it is a mystery wrapped up in an enigma, isn’t it? As I understand it, it’s not just lesions which affect us but also brain volume loss/atrophy ( hate the word atrophy myself!). Axonal damage is more prevalent in people with MS and it’s thought that it adds to progression. That might be relevant to your s-in-law’s situation, if not yours. So difficult for even the most skilled Neuros to know.

I pop 2 high dose Alpha Lipoic acid supplements which apparently helps slow down volume loss (Miranda Olding, an MS nurse who also blogs about complementary therapies, posted a link to some research which showed it helped, but please note I’m no medic!).

Guilt should be listed as one of the symptoms of MS. I know it’s a pretty big factor in my life!

Thank you everyone for your replies. So sorry for the delay coming back, it’s been an awful few weeks. I’ve just posted a new comment about income protection insurance which describes the fight I’ve been having. Hope there’s light at the end of the tunnel xx

I don’t have any advice - just wanted to say I hear you xx