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Original poster

Anyone with MS want to chat

250 replies

Tuesday40 · 05/11/2019 13:10

Hi I’ve recently been diagnosed with MS and wondered if anyone wanted to chat? It’s still a bit raw so don’t feel able to talk about it to people face to face.

I’ve not started treatment yet and feeling worried about what the future holds. Be great to chat to people a little further along than me, or equally hand hold with people going through the same thing.

OP posts:
Garbosdinner · 05/01/2020 12:22

@anunseemlylovefordustin

Everyone with MS is so different. I've just had round 2 of treatment (Lemtrada) and it has wiped me out. I'm still off work 7 weeks later.

My work have been good to be over the last 3 years with both the emotional shock of being diagnosed and with the physical condition. We always talk about the reasonable adjustments with me and what I think I might need. Over the 3 years this has included:

Shorter hours
One day off a week
(Along with a fit note from my GP for both above - limited time to help with fatigue).
Working from home at times.
Bigger computer screen (eyes are crap).
Changed to a natural light in my office (was getting terrible headaches).

Your friend has a great boss!

anunseemlylovefordustin · 05/01/2020 15:57

Thank you, I hadn't thought of a bigger monitor, she does have problems with her eyes so I'll ask her if that would help. She already does a four day week but I think I'll ask if she'd like to work some of those days at home. There's quite a lot of natural light in the office.

She's an amazing strong woman (as are you all!) and is not the type to ask for anything, so I want to make sure I'm being proactive about this stuff.

Thank you!

HappyHedgehog247 · 05/01/2020 16:02

Hi. I remember when I got diagnosed with a chronic condition and it was an awful shock and lots of anxiety about what the future held, so would echo the be kind to yourself. You may want to look at Wahl protocol. (Sorry is this is annoying).

Mixitupalot · 05/01/2020 19:08

Hi all thanks so much for the reassurance.

I had my MRI at 10am this morning. It was fine but so noisy it hurt my head! I get my results in 2 weeks all being well.. fingers crossed!

Garbosdinner · 06/01/2020 08:14

Aye they are very noisy.

I hope you get some good news!

Original poster
Tuesday40 · 06/01/2020 09:35

Yep couldn’t believe how noisy they are! Hope the two weeks passes quickly and you get good news.

OP posts:
CheekyFucker · 06/01/2020 09:48

Hi there,

I am waiting for the results of my MRI to land any moment and am really encouraged to see this thread. Timing just right for me.

Hopefully I will hear it is 'just Fibro' but I have clear signs of demyelination so not feeling particularly hopeful.

It has been a long journey for me, and was off sick for 7 months last year. I have been unwell over Christmas and New Year and am still not right.

I am 50 and have three children between 13 and 7.

Garbosdinner · 06/01/2020 12:57

Hey @CheekyFucker

I can't believe how many stories I have heard about diagnoses taking months, if not years! That must be so stressful.

I was offered, at the time.. the strongest (and most likely to cause side effects) treatment. I figured, yes it's scary but I'd rather give it the best shot.

It's a scary time and emotionally worse (for me than the physical symptoms).. every now and then I have a good cry about 'what if i end up in a wheel chair' moment - and that's okay. But it's like most things.. time helps you come to terms with things and it eventually doesn't seem so scary.

CheekyFucker · 06/01/2020 14:06

@Garbosdinner hi Smile

I am not overly worried about what the diagnosis is. I just want the correct diagnosis so I can get the correct treatment.

I am lucky. I have had 50 years of good health. I really feel for young ones at the beginning of their careers/family life.

Whatever the diagnosis, my symptoms are the same, and it is affecting my life significantly. At least with MS there is a good chance of effective treatment. And people are usually very kind and supportive. With Fibro, everyone thinks it is 'just in your head' and there is no treatment as such.

CheekyFucker · 06/01/2020 14:08

Ha. I realise my two posts are somewhat contradicting. I guess that is the stress of not knowing. My head is up my arse.

Mixitupalot · 15/01/2020 15:14

Hi everyone, wondering if anyone can help?

I am still of on the sick & the owner of the business is now txting me every week to ask for meetings. Up until now I have obliged and attended each week. My sick lines are fortnightly.

The problem now is that I live 30 mins away from work & he has just txted to ask me to come in to see him today. I have had 3 days of utter exhaustion and I don’t feel I can get out of bed never mind drive/attend this meeting.

Any advice?

CourtOfProtection · 15/01/2020 15:24

I don't have MS, but what feels like a million chronic illnesses, can you ask to Skype instead. Explain that you have a limited amount of energy & any exertion causes relapses/worsening health.

You can Skype from bed @Mixitupalot. I've done that in the past Smile

Mixitupalot · 15/01/2020 15:28

@Courtofprotection I was thinking about this. I might ask if he would accept this. I actually think he’s considering firing me 😢

CourtOfProtection · 15/01/2020 15:32

Sad Sorry to hear that. Been there, not well enough to work anymore.

Can you be proactive & ask for some 'adjustments' to help you continue working there, so he knows you're not messing him about? Any HR?

Best of luck

Mixitupalot · 15/01/2020 15:35

I have asked for reasonable adjustments twice and been refused (not formally) just ignored completely. No HR in house it’s all outsourced. My job entails long hours and very physical work. I had asked for reduced hours for office duties but this was also ignored.

Not sure what to do next!

Original poster
Tuesday40 · 15/01/2020 17:25

Hi @Mixitupalot do you have any union support? Or maybe acas or can could help? Should your employer be contacting that frequently if you are signed off? Sounds pretty stressful at a time when you don’t need more stress.

OP posts:
Original poster
Tuesday40 · 15/01/2020 17:34

CAB not can

OP posts:
Mixitupalot · 16/01/2020 10:54

Thanks @Tuesday40 I will look into both those. I am not part of a union - small family run business.

Apparently it’s ok for him to contact me, not sure about the frequent meetings though. However some times he calls/txts very late at night say 12/1am. That’s stressful as I am always waiting for it.

Still no results as yet from my MRI, trying not to think about that.

Original poster
Tuesday40 · 16/01/2020 18:32

It sounds really stressful, is he calling you on your personal number? It’s really inappropriate to be calling you/texting at those times. I hope CAB can help.

How will they let you know your MRI results? Will they write to you?

OP posts:
MKUltrachic · 17/01/2020 00:28

I use Sativex (cannabis mouth spray) for leg cramps and it is a miracle. But it does make me high so I only use it at night so as not to embarrass myself. Too bad it’s so £££

CheekyFucker · 18/01/2020 12:29

@Mixitupalot that is appalling that he would text or call so late. Can you turn your phone off? Could you arrange a regular day and time to communicate?

I have yet to hear my MRI results. Over a month now and I was told two weeks. Delay due to change of consultant apparently. Cheers for that.

Mega stress at work as having to put in a grievance about a bullying manager. I tried to explain how his treatment of me is increasing my stress, thus making me more symptomatic. I am not asking for reasonable adjustment, just basic human decency with a smattering of respect.

Mixitupalot · 18/01/2020 13:48

@CheekyFucker gosh that’s awful! Some ppl have no empathy at all. I hope you get it sorted as soon as possible.

I put my request in writing and in txt (his fav way to communicate) so that he can’t deny that I’ve asked for adjustments. I have asked for regular working hours as I can work anywhere from 7am-3am usually around 14hrs in there every day. It was killing me. I couldn’t stay focused at all & physically it was to demanding for me. He has yet to replay to me or acknowledge in any way.

I hope we get our results soon.. fingers crossed for the all clear!!

Original poster
Tuesday40 · 21/01/2020 14:45

Hi @CheekyFucker and @Mixitupalot how you both getting on. Hope you get your MRI results soon, it must be hard waiting all this time in limbo. Fingers crossed for you both

OP posts:
CheekyFucker · 21/01/2020 18:39

@Mixitupalot 14 hour days? Good Lord. That is appalling.

CheekyFucker · 21/01/2020 18:40

@Tuesday40 thank you for thinking of us Smile

Still no news. Grr!