Bit better, today

Thanks to all who replied to my post about my appraisal.

I am toying with the idea of sending my boss a link to the Society’s leaflet about fatigue, because I’m not sure I’ve ever really explained it to him. Not because I’m being deliberately cagey or secretive, but because it’s not an easy thing to explain. And anyway, for me it’s NORMAL. If you feel like that every day, you don’t really ring your boss to explain there’s a specific reason you’re not feeling “proactive”, or getting through much work, because you accept that as a fact of life. If I rang him to say: “It’s because I feel as if I’ve got flu’ today - like last week, and the week before that”, what would be the point? There’s no point ringing to update him on how I feel normally.

I think other factors that may disguise the problem are that I look “normal”, those few times he does see me (we’re a geographically distributed team); I still comb my hair, and wear lipstick and stuff, and I don’t use a stick. Also the work he does receive from me, as he remarked, is of high quality. So again, no hint the person producing it is ill, or has a problem - it’s not riddled with tell-tale mistakes. Finally, I think he may misunderstand the nature of a relapsing remitting disease, and assume someone who isn’t actively relapsing is absolutely fine! Of course, as most here will know, that’s far from the truth. But he may be thinking: “She hasn’t had an episode for ages, so what IS the problem?”.

Anyway, as he’s moving on soon, I don’t know whether to take up all these things, or just leave it as water-under-the-bridge, and see how things go with the next person.

I’ve been to the doc’s this morning, and felt relatively optimistic about that, although I’ve come out with a list of prescriptions as long as your arm. I’m now prescribed FOUR separate different types of painkiller (even the ones that made me feel sick), just in case I get desperate and need to mix and match.

Also got a new prescription for diazepam - she’s accepted I’m using it for spasticity now, and not just anxiety.

And I found out the delay with the baclofen has been because the pharmacy has gone into administration! The lying toe-rags! I’m down to two days’ worth (scary!), and kept ringing up to ask why my prescription hadn’t turned up, but they claimed the surgery hadn’t done it. Apparently, all the 'scrips are all over the place, and many patients have been affected. So the doc said: “I dunno what’s happened: they’re under new management, so best thing is I’ll issue the whole lot again, and you can take it in, and start again from scratch”.

What a kerfuffle, eh? Good job I found out!



Tina, I used to work with disabled young people and students (after diagnosis), and they did not (want to) get it (the employers or better, their representatives). I must admit that there was a reasonable increase of (personal) risk involved, but one can still ‘work around that’ if ‘they are prepared to allow you to do so’…

It all depends on the person you would talk to I assume, but do not hold your breath…, I am talking out of experience!

I would personnally ‘stick to my guns’, especially as you still receive positive comments. Do not let go, you’re ‘out of the picture’ before you know it! and the only looser will be you! Only stàrt to reconsider it if your health problems really do take over your normal life. What about your colleagues, any mental support in that area?

Good luck!

Thanks Jos,

You’re right - nothing actually came up on the appraisal that would be a disciplinary matter, or even the cause of a bad rating overall.

There were no problems at all with standard of work; the concerns all centered on productivity and proactivity (both quite low, I’ll admit) - but they were not low enough to fall below the minimum acceptable standard.

I do think my employers mean well, and try to do the right thing, but I think because my symptoms are mostly invisible, there’s an element of “forgetting” I’m ill, and that I probably won’t be as productive or proactive as someone who was well.

I’ve even had, in the past: "I don’t want to hear: ‘Oh, I forgot!’ " even though loss of concentration and short-term-memory loss are common features of the disease. So when I say, honestly: “I didn’t get around to it”, or “Sorry, I forgot”, it sounds like I’m being flippant.

I think you’re right I shouldn’t resign, especially when there’s no disciplinary or capability assessment pending. It was just a few adverse comments, that’s all. I’m not sure they will even go on the official record.

I agree that once out of work, and out of the habit, it would be very, very hard to get back in, so I would be wise not to give up lightly. Also there are redundancy offers pending - not yet in my area, but they will extend it if they don’t get enough volunteers. So even if I did decide I’d had enough, I might get the chance to leave with a fat cheque, instead of walking away with diddly squat - which would be stupid and self-defeating, as you say.

Thanks again, for your comments.


Hi Tina, glad you are doing a bit better today. It might be not a bad idea to send your boss a link to the site about fatigue, do you think he would read it? I now you say you’ll have a new boss soon, perhaps you should do this straightaway with the new boss, I wonder if you know yet who it is or If you know them? By the way, I think a high standard of work is important and since your work is of a high standard I can’t really see any reason for complaint myself. Glad you got your prescriptions sorted out, what a bother with the pharmacy. Will you mean you have to go back to Boots now if the other one has gone out of business. Cheryl:)

Hi Cheryl,

I’m not sure my departing boss would read it. Not because he doesn’t care, but because it’s not going to be his responsibility in another few weeks, is it? He’d be unlucky to end up with responsibility for another staff member with MS (I think there are others, but not very many), so he probably wouldn’t read it unless it cropped up again with someone else. So maybe just let sleeping dogs lie, this time, but maybe not be quite so reticent with future bosses about MS, and how it may affect me - and, specifically, my productivity!

Hate to say it, but I think I might have spoken to soon about the prescriptions. :frowning:

The insolvent chemist is under new management, and will continue to operate. The doctor said the new chain taking over are OK, so to take the prescriptions in, and start over from scratch with the new lot. Which I did!

I had a taxi on a meter waiting outside, so when they asked if I would hang about 15 minutes for the prescriptions to be made up, or should their driver bring them round this afternoon, I gratefully agreed to the latter.

They said it should be with me between 1:00 and 4:00 this afternoon, so I have stayed in ALL afternoon, foregoing my daily walk (apparently the sunniest afternoon so far this year - Grrrrr.)

Now 4:30, and still no delivery, so I don’t think it’s going to come - AGAIN! Really scared now, and gonna have to start rationing baclofen, because I only now have enough for tonight and tomorrow. They’ve been telling me for a fortnight: “Don’t worry, it’s coming, we wouldn’t leave you stranded without any!”, without ever mentioning they were in financial difficulties. They told me the surgery were the ones dragging their feet! Maybe the staff hadn’t even been told. The doctor said she only found out on Friday! It was she who recommended them in the first place, after I recounted my problems with Boots.



Hi again Tina, you are probably right about your boss not reading it tbh, I know what you mean, and as you say he probably won’t be boss again to someone else with ms. I’m thinking about you and your prescriptions, what a nightmare for you, especially as you are running out f baclofen. I’ll be thinking about you and hoping they turn up. Sorr you missed your walk, especially on the sunniest day of th year too. Isn’t that just typical? Cheryl:-)

Hi again all,

Right, I’ve just rung the pharmacy (this must be the fourth time now, since I first requested the repeat prescriptions, a fortnight ago).

They confirmed the delivery is NOT coming, because “We’re just waiting for one lot of tablets, which should come in first thing tomorrow.”

Anxiously, I asked: “It’s not the Baclofen, is it? Please tell me you’ve got the Baclofen?”

She said: “No, the Baclofen is here - I’m sitting here looking at it. The ones we’re waiting for should be in by 11:30 tomorrow, and we’ll send the driver straight round.”

I said: “You do understand I must have the Baclofen by tomorrow, don’t you, even if I can’t get the rest? Because I mustn’t stop these suddenly.”

She said: “Yes, yes, they’re here, they will get to you before lunchtime tomorrow!”

The only thing that worries me is they’ve already been saying everything’s fine for a fortnight. I’m now down to my last day, but still haven’t got the replacement Baclofen.

They admitted the staff hadn’t known, either, that the company had gone bust, so when they kept reassuring me it was all in hand, it was probably in good faith. Management must have known, but the people on the phone and on the counter didn’t. :frowning:

S’pose they are lucky someone stepped in to save their jobs.

Thanks Rebecca, for the hints from your experience with Crohns. I suppose you already know it seems to be connected with MS in some way? We already had MS in the family, and Crohns too - in fact, my mum was distraught to learn a cousin died of it, in his 30s. Not at all the norm, especially these days - this was some decades ago. But there does seem to be a family link.




Definitely explain things to your new boss sooner rather than later - you don’t want a repeat of the problems you’ve been having with your current one. That’s an awful way to be treated by your pharmacy, I hope you get your drugs soon. My mother in law has Crohns - it is an auto-immune disease, so in the same “family” as MS

Luisa x

I’m sure you posted with the best of intent, Annie, but I have no problem with addiction of any kind, and I don’t really want to read scare sites about how I’m likely to become addicted.

I have a problem with uncontrolled pain.

If that means having to take a cocktail of drugs which may be “less than ideal”, so what? Having MS at all is less than ideal. I’m not prepared to sit here and do nothing, and put up with untreated pain, because I’m too scared to take drugs that can occasionally cause addiction problems.

ALL treatment has risks. All treatment that does any good, that is. If you aren’t willing to accept any risks, you have to put up with going without treatment, which isn’t really an option for me at the moment.

Of course I’d rather not have to take drugs. But compared with living with unrelieved pain, it’s the lesser of two evils.

Oh, and yes, I wish there was just one pill that did it all, and that I didn’t have to take a “cocktail” as you put it.

But in truth, I’m not taking them all at once. Some of them have been prescribed precisely so that I have the discretion to vary the regime from time to time, and am not on one thing incessantly.

Baclofen is permanent.

The others are “take as needed”.