Last reply 5 months ago
Easiest employment options

Hi, I’ve read through quite a few posts talking work but I think that asking my question and getting some advice will be best this way. I had Lemtrada infusion June 2017 & June 2018.

I worked for a company for 13 years. This was great as I worked from my computer at home so when I was diagnosed with MS I could still manage my job easily. (website development/management/admin) Unexpected in November 2017 I was made redundant.

I spent ages job hunting anything I could manage. I got job as midday supervisor at local primary school. I soon found children did not respect me and I was never up to date with changes and it was hard work for little ££ being only 1 hour a day so searched again.

I got new job last October as a fundraiser for a charity. It’s Wednesday-Saturday so 4 days a week. I travel to different venues each shift, carry then setup a table, posted and material then fundraise 7 hours. I can need to drive anything from 20 miles to 50 miles to venue then again to get home so it’s often another 2 – 3 hours on my fundraising time so I’m pushing myself.

It’s now caught me out & I’ve been off work since 17th January. GP doesn’t understand & is grumpy giving me sick note. I did call my neurology team & the MS nurse saw me. Blood tests Tec don’t show any problems so it’s just MS. She said may be my job isn’t the one for me so I may need to change.

There’s nothing else or easier options in the company so I’ve been searching jobs. I have applied for 6 other jobs but I’m getting a no thanks or no reply. GP told her receptionist the note she does for me today is the last then she’ll need to see me. I don’t know how long this note will cover yet but I do know seeing me won’t help her see fatigue & neurological pain.

Any work ideas please?

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stumbler
6 months ago

Hi @norfolkgal , long time, no see. So, how have you been after two rounds of Lemtrada?

I must admit, I do admire your perseverance to obtain an income in any way you can, trying your hand at other things.

Ideally, you need a position similar to your old job, i.e. web development at home. That would hopefully provide a better financial return, without the stress and hassle of a commute.

Have you considered freelance or contracting?

It’s a shame that your Doctor isn’t a bit more empathetic. Perhaps you could get your MS Nurse to liaise with Dr. Grumpy, to explain the situation?


norfolkgal
6 months ago

Hi @Stumler. I thought you’d be first to reply to me as I remember how helpful you’ve been with any questions I’ve had in the past. It’s been a long time but I’ve still been around a bit, just more on Facebook & not logged in when here 😯

On thought I’ve been on with Lemtrada, my Neuro team are amazed when each month blood test says I’m ok & I’ve caught nothing with such a low immune system. With current fatigue etc many others on Lemtrada said it sounds Thyroid which is a known side effect but its been tested & ok.

When made redundant I did contact all competitors with a letter & my C.V but no answer or told to keep watch on their LinkedIn. I know I was very lucky working at home with going nowhere at all & good salary…..it seems there’s nothing like it.

I did debate freelance but on looking again I didn’t think I’d cope with what was needed for each one I found.
Main jobs around now seem to be carer or cleaners, I could probably do both but again I’d be pushing myself & end up worse off like I have this time.

I did tell MS nurse about grumpy GP, she tested what they didn’t & said she can’t do note for work, consultant busy & GP my primary care so they should.
I had monthly blood test this morning so called MS nurse. Left answer phone message saying blood test done, still struggling so asked GP for another sick note. I was told it will be done but don’t know how long for & GP will want to see me before issuing another but GP can’t see or understand fatigue, weakness & neuropathic pain


stumbler
6 months ago

@norfolkgal , it’s a tough world out there, that’s for sure. And, all this Brexit nonsense doesn’t help.

Are you sure that they’re checking your thyroid levels on your regular blood test? The reason I ask is that I know of another Lemmie, who had terrible bloating, a sign of thyroid issues. And it was only months later she was diagnosed with Graves Disease. Her legs are causing all manner of problems now.

And, what is the problem with Dr Grumpy? Does it cost him personally when he signs you off? Could Dr Grumpy call your MS Nurse to discuss?


norfolkgal
6 months ago

@stumbler , I am quite sure they are checking thyroid right. They check every 3 months as standard and my 3 months was on January test. When I had an appointment because not feeling well, GP did not do my basics & urine test as MS Nurse told me to ask for so she done a urine test and send me for another blood test checking thyroid again plus iron, liver & kidneys (anything she could think would cause how I feel). She said she would have results next day and will call me if a problem, I heard nothing more from her.

Last week I got a copy of letter to my GP (they send each month after blood test and my follow appointment then CC me). It told GP how I saw them, what I was feeling and what they tested for & it did say Ferritin (iron) was within range but lower end of range.

That means thyroid been tested twice in last month really. I was also told how Biotin can alter thyroid results so I sent that information to MS Nurse and then didn’t take it for 4 days before that blood test at appointment.

Problem at GP is probably that they don’t really know me. When I need appointment it is always with whoever is available. When I was bad & MS Nurse said to get them to test basics they put me with the nurse practitioner who was rude and did nothing for me. I did tell MS Nurse that but she just said GP primary care for my sick notes.
I’m picking up the note tomorrow so I will see how long they have noted I am off and then see how I feel and tell MS Nurse too.


norfolkgal
5 months ago

Sticking to my last thread when I’m feeling down & need another moan so excuse me…..

Following the above my husband agreed & after 5 weeks off work sick I resigned. Since then I’ve applied for loads of jobs, had 2 interviews but nothing.
My 15 year old is suffering anxiety/depression so GP signed her off school for week so trying to help her is keeping me a but busy but I’m still lost and missing the £££ 😒


supermum1983
5 months ago

That’s a lot of driving, I do a bit with work and school runs but u need a less active role. Hope your daughter gets better soon.


stumbler
5 months ago

@norfolkgal , I have a couple of suggestions, based on your comments above.

Write/email the Practice Manager at your Surgery politely pointing out that there seems little awareness of Multiple Sclerosis being shown, leading to a lack of empathy for the problems that the condition can cause. And, ask if there’s anything that you can do to address the issue, e.g. supplying literature (from the MS Trust).

It’s best to offer constructive solutions upfront…………

Secondly, are you able to get to your local Citizens Advice Bureau (CAB)? It would be worthwhile discussing with them about the financial assistance that may be available to you. Yes, I’m talking PIP (if not claimed already) and ESA. You’ve “played the game”, working and paying taxes, so asking for a bit of help in return seems fair.

If you can remove these two areas of stress from your life, then hopefully your daughter will perk up too. Our children are more perceptive than we might think, so she’s probably worrying about you, in addition to dealing with the pressures associated with being 15.


norfolkgal
5 months ago

Thanks @supermum1983

I’ll consider writing to practice manager if I need to in future @stumbled but for now I don’t need them.
I saw consultant last week, he listened to how I’d felt, how I’m feeling now and checked my reactions etc. I received a copy of letter he sent GP saying everything I told him, how he things my MS is doing, that he’ll do MRI to check & let them know results. He also told them fatigue getting better but I’m still getting it & I’ve resigned from job that was too much for me.
I now know they’ve been told so can always refer to that 😉.

I do get basic PIP for daily living and mobility. Was at an MS Society vmeeting start of month & benefits got talked about. They did say ESA is down to income & my husband may earn too much for me to get it but I’d need to see.

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