My mum (just a bit of a rant, really)

Everyday living
1

My mum has just got onto the internet, at the grand old age of 73.

This is a bit of a mixed blessing, because it does mean she can now e-mail, instead of at least one hour on the phone every week, dwelling on all her ailments.

But she can now also Google anything, and a little knowledge is a dangerous thing. Have had an argument this afternoon, because she’s convinced that because I have MS, I will automatically get PIP, and a free mobility car!

She’s read on another website (not this one - about her own ailments, of course) that MS is an automatic disability, under the Equality Act 2010.

OK, so far so good, she’s not wrong there.

But she’s then gone on to read about PIP, and has made the leap (sadly unsupported by the facts) that if anyone with MS is “automatically” disabled under the 2010 Act, then it follows they’ll automatically get PIP.

“No, Mum, because I won’t qualify.”

“But you are disabled: it says so under the Act!”

“But Mum, that’s the workplace - it doesn’t work like that for benefits!”

“Well why won’t you get it?”

“Because it’s subject to a strict capability assessment: I would get 0 points for daily living, and 0 points for mobility - you need at least 15 points!”

“But if you have MS, don’t you automatically qualify? You could have a mobility car!”

Dream on, Mother! Quite irrelevant anyway, as what would be the point of a mobility car, to a non-driver? She’s convinced all I need to do is wave my diagnosis, and report to collect my free money. If only it were that simple, eh?

Tina

2

Oh Tina… as you say - if only. Your Mum means well - you’re her daughter remember.

Big hug,

Hazel x

3

Hi Tina,something I’ve come to realise over the years is that mothers sometimes feel guilt over children with MS.A mother may try to compensate for this, and again,I’ve seen and heard of this manifesting itself in different ways.Is it possible that your Mum is trying to help with her newly found skills, and isn’t going to take no for an answer…

Laters,

Wb

4

Hi folks, Yeah, she’s my mum, and I do know she’s only trying to help. And Wb, there’s certainly something in the guilt thing. Probably too much info, especially now she’s found Google and could come here - but I was born nearly two months premature, after my mum consented to marital relations, despite worrying it might harm her unborn child. I don’t think there’s any medical evidence to support that it poses any danger, but coincidence or not, my mum went into labour shortly after. She’s always wondered if my present health problems were linked to my premature delivery, and whether that in turn was linked to decisions she made at the time. Factually, premature birth is linked to higher lifetime risk of disability, but not -as far as I know - to MS specifically. And yes, I think it’s the newfound skills thing as well. She’s eager to come up with things she thinks will be helpful, but has only got half the story, and doesn’t understand why I’m not applying for my “free money”, which she’s sure the law says I’m entitled to. I think the problem is the website she looked at (which is unrelated to MS) has lumped the two things together, as if they were part of the same thing. So right after the bit where it says about the 2010 Equality Act, it goes on to talk about PIP, as if being covered by one would automatically mean you got the other. It doesn’t actually SAY that, of course, but anyone reading it who didn’t know about the descriptors would probably think: “Oh, MS must mean you get it automatically then!”, which is exactly what Mum thought. She doesn’t understand why I’ve not applied for my “free” car - despite (i) No chance, as still able to walk 3 miles, and (ii) Can’t drive anyway. T. x

5

Hi Tina,

Well, well done for your mum at 73 for attempting the internet she must be alert to be able to master it. Trouble being as you say she can’t interpret what the facts actually are and as Wb says she may feel guilty for you having MS and is only trying to do her best for you. Be kind to her as her only crime is trying to fight your corner.

You take care and don’t drive to fast, he, he. sorry couldn’t resist!!!

Janet

x

6

Hi Janet,

Ha ha, Mum knows I don’t drive, so I’m not sure quite what she thinks I’d do with the mythical car if I had it - apart from terrorise the natives, LoL.

Unless she thinks I’d get free lessons too?

T.

x

7

And todays bonus is…!!!

Janet

xx

8

Maybe she was volunteering to come round a drive you everywhere you need to go? That would fill me with fear! My Mums 81 and strarting to think about not driving so much.

She’s been on the internet for a few years now, but I don’t think she uses it for much more than email. Even when it would be very useful to find out things from official websites! Bizarrely she doen’t believe everything medical she doesn’t get from a textbook. She was a Biology teacher and can filter the wheat from the chaff so wouldn’t be lead astray with half explainations etc

9

Haha, Mum doesn’t drive either, so I know she wasn’t offering! That is, she had a licence, and presumably still does…somewhere, but it must be 20 years at least since she got behind a wheel, and might be 30. I’m not sure exactly how or when she gave up. I suppose once we all grew up, and she no longer needed it for the “Mum” type things (she never did the school-run anyway), it just gradually lapsed. She always hated driving, which is probably a large part of the reason I never learnt. I knew she was phobic about it, so it probably affected me - I grew up thinking there must be some really big issue around driving, so it wasn’t for me. Of course, I never bargained on getting ill at a relatively young age - nobody does! I’m getting a bit poorly, now, to walk everywhere, or spend hours hanging around at bus stops, but I don’t have much choice. Mum doesn’t believe any old tat she reads on the internet, though. Actually, nothing she’d looked up was factually incorrect. It was more a problem with the way it was presented. Because it mentioned the 2010 Equality Act, then went straight on to discuss PIP, it made it appear (without actually saying) that people who were covered by the Act would certainly therefore get PIP. Mum didn’t understand how I could agree that yes, I am covered by the Act, but no, it doesn’t mean I will get PIP - she thought it was all part of the same. Not such an uncommon belief, actually. Most people who are not MSers assume diagnosis automatically qualifies for benefits, don’t you think? Tina

10

Hi Tina

She’s just trying to do her best, bless her. It’s not really her fault when most of the media out there is misleading and at least she has you to point out that it’s all wrong. I have so many well-meaning members of the family telling me of the latest miracle cure because they read it in the Daily Mail!

Sadly, my mum passed away 14 months ago. She was full of guilt when I was diagnosed and came out with things like “You always were a clumsy child but we never thought it was anything more sinister”. I had to reassure her that it wasn’t. I just was clumsy all my life! She also came out with some daft stuff that used to irritate the hell out of me but I’d give anything now to have her back and have our bingo nights together again when she’d tell me the same story three times ;-).

Cherish your mum and all the irritating stuff too. She’s just doing her best to care about you. I know I annoy the hell out of my son too and I’m making lots of mistakes along the way but every now and then he does something to show he cares so I guess I’m not doing too badly. Wouldn’t it be a boring world if none of us ever made mistakes?

Take care and enjoy Mother’s Day with her

Tracey xx

11

Hi Tracey,

We don’t do Mother’s Day, I’m afraid - I’m sure I don’t need even more tranquilisers than I’m already on. I’m over a hundred miles away, and don’t drive (as already mentioned) so it’s not realistic anyway.

Yes, I was a “clumsy” child, too. I could never do the stuff the other kids could do in PE. It was ages before I could even skip, or do the most basic stuff, and I never mastered climbing ropes, jumping boxes, or doing handstands. Back then, it was called quite disparaging things, like “minimal brain damage”, so I always thought there was something wrong with my brain, even before MS was diagnosed. So much so, that when I had my MRI, I was surprised MS was ALL it showed. I knew I wasn’t retarded or anything, but I’d expected a bit to be missing or underdeveloped - whichever bit is responsible for cartwheels, handstands, and catching balls.

So I was really surprised that it was “all there”, like a big fat walnut, with only one or two minor blemishes (lesions). My surprise must have registered, because the neuro asked: “Why ever did you expect anything else to be the matter with it?”

“Um…because I was born premature and always led to believe I had some kind of brain damage.”

So there was absolutely not a withered bit of my brain that would account for why I simply couldn’t “do” sport all those years.

I’m still not sure if it was related or not. I do think I’ve had balance and coordination problems since childhood, and in a way, how I am now seems like a natural extension of that. Not anything new - just more of the same. I do know there have now been rare examples of MS diagnosis in childhood. So I suppose I’ll never know whether I’ve “always” had it, or whether it’s two entirely separate problems - one how I would have been anyway, but one not.

I think when this has been discussed here before, quite a few (but certainly not everyone) have said they were aware of feeling clumsy or different at school, so sometimes I do wonder how far the problem stretches back. Not something we can ever know, though.

I asked the neuro how we could be sure the lesions hadn’t always been there - or at least for a very long time - and he admitted we couldn’t.

T.

x

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Hi Tina

I didn’t realise you were so far away from your Mum, that’s probably another reason why she plagues with emails and such because she worries that she can’t be near enough to help in any practial way. My Mum used to fret that because of her heart condition she couldn’t do more for me. She still insisted on doing my ironing when my hands were at their worst and I had to give in gracefully just to keep the peace!

Interesting about the lack of co-ordination as children. I just about managed to ride a bike but had to put my feet down whenever anything passed me as I knew I was too wobbly and was bound to fall off. I never mastered roller skates, or balance beams, or pogo sticks, stilts or anything requiring balance. Handstands were only possible against a wall and for a few seconds at best. My juggling skills, however, were legendary, especially when it involved plates of food ;-). The family still love to have a good laugh about those! Sometimes I even caught the toast butter side up on the plate! My sister excelled at all the sporty things that I lacked in so I always felt like a failure and of course I’m the only sibling out of five with spectacles and a lazy eye.

When I learned to drive, on long journeys my right foot would go tingly on long stretches but I always accredited that to my old Mini which was a real bone-shaker as it had very basic rubber blocks for shock absorbers. It never occurred to me to mention that to my GP or the fact that my clumsiness used to go in 6 week cycles. I remember joking with my hairdresser that I would break loads of things in one 6 week spell and then go months without a single breakage. It doesn’t pay to dwell on it but I do wonder how long I’ve had this condition. My parents also used to say that for someone with supposedly reasonable intelligence I would sometimes do the most incredibly ditsy things - I now recognise this as the brain fog when I just cannot think of the most logical action and I do really dumb things. It really makes me think …

Fingers crossed for an accident-prone free week for the both of us :slight_smile: (I won’t hold my breath)

Tracey x

13

Hi Tina, first of all well done to your mum on mastering the Internet and email. I’m afraid my mum hasn’t got there herself yet and only deals with email if my dad (who has always been into all the latest technology) helps her. As you say perhaps a mixed blessing, since I feel that if my mum were on google she’d be telling me all the same things as your mum does. Over the years I’ve stopped talking to my mum about ms unless I really have to because of the comments she comes out with. But, my mum does do a lot to help me especially with the children. I also suspect that, as you say, your mum feels guilty, I think mine does too and tbh, it would be better if she didn’t. My dad seems happy and understanding if I go somewhere with him in the wheelchair, he doesn’t think it’s strange or a problem, but my mum doesn’t like me going in the wheelchair. It’s almost like I should struggle to walk when she is there and, in the past I have just struggled and walked because my mum has been there. I suspect that this is down to my mum feeling guilt about something she did or didnt do in the past and my dad either doesn’t feel (or at least doesn’t show) that he feels this guilt. This hasn’t really helped you though has it. Btw, I was also quite a clumsy uncoordinated child, wasn’t into sport at school, struggled with cartwheels, handstands, ball sports, netball etc. If anyone was going to fall over something it would be me. I’ve also always wondered if it was a precursor to my ms even back then, but as you say we’ll never know. However, as a child, right up even into my early twenties, I ice skated, to quite a high standard, so that doesn’t seem consistent with uncoordinated and clumsy! Cheryl:-)

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Oh Anitra I soooooo understand.

My whole family gang up on me all the time that I should be claiming this that and the other. We are not a family that has raised voices over anything,but benefits…oh boy!!!

Why is it that even when faced with the criteria they say well you can’t do this that and the other,and yet are quite happy coming home to a cooked meal,clean house,cupboards full of food and clothes washed and laundered.

I admit I have to work off lists,have plenty of breaks and leave till tommorrow what isn’t essential,but I know I don’t qualify.

Before work retired me I went on the first benefit in my working life ESA when my sick pay was stopping. ATOS saw me as fully fit for work. I was retired on full enhanced pension as unable to ever work in meaningful employment again.

I have no intention of filling any forms in again unless something drastic happens,and yet they still harp on knowing that.

Pip

15

Thanks Cheryl and Pip,

The weird thing about it is this is the same mum, who a year or two ago, was vehemently arguing I’m NOT disabled.

She thinks “disabled” is needing an obvious aid, like a stick or wheelchair - which I don’t (yet) - so she was quite indignant that the EDSS says I am still disabled (EDSS not zero) .

“But you’re NOT disabled, are you? Who said so?”

“My neuro says so, Mum!”

Although I’ve not visibly deteriorated, I notice it’s now gone from: “But you’re NOT disabled!”, to: “Why aren’t you claiming free everything?”

I wouldn’t mind but Mum & Dad both tipped thousands of pounds down the drain over the years, by not claiming things they were entitled to. Luckily, they didn’t need to - but that’s beside the point. They wouldn’t have qualified for any means-tested benefits, but if they qualified for non-means tested ones, why shouldn’t they have had them?

But now Mum, who’s written off all that money she could have claimed, is wondering why I don’t claim things I certainly wouldn’t get.

I agree with you Pip (about PIP!), I know I wouldn’t get it. It’s not even close enough to be worth a punt. I wouldn’t get ESA either. Even if I do the “worst day” thing, I’m sure I’ll be declared absolutely fine. I can walk three or four miles - which is normal - except I have to go to bed afterwards - which is not! But the symptoms I suffer from most don’t even have a descriptor for them. There’s nothing about chronic pain, which without necessarily being physically disabling, can sap all your energy, and wreck your concentration. There’s nothing about fatigue, that means I regularly need to nap in the afternoons, or hit a wall of fatigue after just one task - like unloading the washing machine.

I think the rule-of-thumb to be sure of getting something is 15 points on just ONE descriptor. I’d be lucky if I got more than 3 or 4 across all of them, even if I really played the “worst day” stuff. I’m not moaning that I’m not as ill as I could be - from that point of view, long may it continue that I wouldn’t qualify.

But it’s people - now including my mum - all assuming an MS diagnosis means there’s a package of “no-strings” benefits you can claim.

/Sigh,

T.

x

16

Hello,

Sounds like she only wants the best. Their is a fine line between help and hindrance. My family are the total opposite, avoid taking any benefits at all cost’s, but i have no choice at the mo. Hopefully not forever. My family don’t show any guit over my ms, but it does get on my !@£$ that they always ask do i want to do this and that which i can’t do now. Drives me crazy. They will learn one day.

Darren

17

If only your dear mum could get a job with ATOS, eh? We`d all be worry free and happy with our benefit decisions.

Bless her!

Eons ago, I had to have an emergency hysterectomy due to pre-cancer cells. Mum was in the bingo hall arguing with another woman about periods. This woman told her that as I still had my ovaries, I would have a monthly period. Mum knew I wouldnt, but this woman made her doubt herself and rang me in the intermission, to ask for confirmation.

I told her to tell that know all woman to ring me if she needed an explanation!

Poor mum was exasperated!

Wish mum was still with us now.

luv Pollx

ps I had a lovely Mother`s Day yesterday.