Totally fed up with family!!!

Everyday living
1

Hi all.

I was diagnosed with MS in April this year. Since then I’ve been reasonably ok but sometimes I’ve felt pretty awful. I started on Avonex a few weeks ago and that is going fine since then.

But, my family seem totally unbothered or interested by the fact that I have MS. Please don’t get me wrong, I certainly don’t expect or want them constantly fussing and asking about me. But between my two adult children, sister, two brothers, my husband’s sister and two brothers and my father in law, not one of them ever asks how I am, if I’m coping etc. We’re visiting my father in law over the bank holiday weekend and the rest of my husbands family will be there. We were there not long after I got my diagnosis and not one of them asked me how I was. I’m dreading visiting but for my husbands sake, I just get through it and think, we’ll be home soon. It’s either they don’t care, don’t understand or don’t know what to say! Just a little ‘how are you’ or ‘how’s the injections going’ would mean such a lot but nobody does or says anything at all.

I work full time and struggle to fit everything in at the weekend. I get very tired. Steve helps a bit but only if I ask first, so most of the time I just do it myself and then resent having to do it. He also hates it when I get a bit down and it’s like I’m not allowed to say anything negative at all. He doesn’t seem to undertstand that sometimes I need to have a rant and moan. I’ve got Multiple Sclerosis and I’m trying to get my head round that, of course I’m going to get a little fed up at times. I just can’t be cheery and happy all the time. A lot of the time, I’m perfectly fine and I’m just getting on with my life as it is now, with no bother at all. But some days, when I’m tired and in pain, I get fed up with it

Sorry if I’ve ranted on a bit but I’m sure some of you understand how I feel.

Lynne

2

lynne

u are newly diagnosed and i suspect they dont know what to say.

from an oldie who has been diagnosed 7 years communication is the key-boring reply but i believe it to be true.

they see u coping in the main so dont question that. you need to tell them u would welcome them asking how ru. sometimes we are our own worst enemy-others are not mind readers and with us all coping differently we need to share with others what we expect of them. they have maybe read up re ms and dont understand it, again, its down to u to tell what u r experiencing, not whats written in a book/online.

but its early days for everyone-it will take time to adjust.

take care-it will all work out for you.

ellie x

3

Hello Lynne,

I don’t think that you are at all unreasonable for wanting some feedback from your family with your MS. I had exactly the same situation too with my family. At times I used to wonder if the diagnosis or the meetings with the neurologist, or the symptoms etc were all just a figment of my imagination. Of course it isn’t and wasn’t, but looking back, I think that my family were all in as much shock as I was. I put it down to them being self centred at the time, but I think that we were all busy, and they just couldn’t cope with another layer of trouble. This was more than twenty years ago and though one or two family members will never really show any interest, most have now slotted in to my new situation. I also have to say that the family only really took note when my symptoms started to show - perhaps they all needed something more obvious to get hold of than just a spoken diagnosis. Good luck with your family, and I am sure that everything will fall into place as it has done with me.

Best Wishes,

Moira

4

Hi Lynne,

I do know how you feel, you just need someone to acknowledge that you have a medical condition which affects you, your body, your outlook on things, your fears about the future, your fears how it will affect your family. and fears about how the ms will progress.

People don’t understand because they can’t see what’s happening, can’t understand that when you have a good day/week, how come the next day/week or the day/week after you might have a crap day/week. That’s what happens and sometimes I feel personally that people think I’m making it up or exaggerating. If someone asks what’s wrong with me and I tell them they seem shocked or just brush it off. I think why did you ask if you didn’t want to hear the answer !!!

I guess you might identify with that.

The fact that you are on Avonex may in itself make you feel like crap with the flu like symptoms involved. Maybe people think because you have started a DMD you are miraculously going to feel better straightaway.

I find that if my ms comes into the conversation, someone always has a story to tell about someone they know with the condition who is doing miraculously well and they say things like: " Fred is 70 now and he’s had ms for years and it’s never bothered him" or " That woman down the road has got ms and you’d never know she had anything wrong with her "

I admit I never knew anything about ms or even thought about it until I was diagnosed.

It’s a fact of life but if you say you’ve got or had cancer then the majority of the population will understand and empathise ( please do not think I am making light of cancer or anyone who is going through that ) I’m trying to make a comparison that cancer is so well publicised and ( sadly for any sufferers or people affected ) much more common than ms so there is more info available and that inevitably most people will know something about it or somebody with it and how it affects people.

I feel there is little understanding of ms and just how debilitating it can be to some people.

I admire greatly MSers who go out to work and have to bring up a family, I’m lucky enough to work from home and have no children and I still sometimes feel like absolute ST. So I think you and all the other MSers on here are bldy brilliant to try and cope with everything.

Your hubby probably just doesn’t know what to do and if I were you I would keep asking him for help when you need it, don’t try to do something yourself if you can’t do it. Has he been there with you when you’ve seen the consultant or ms nurse? He needs to know that this illness affects your moods and your physical well being…maybe he would listen to somebody like that and then maybe he can explain to his family just how this is affecting you. It could be that his family are too embarrased to ask because they don’t know anything about ms or unfortunately it could be that they are so wrapped up with their own lives that they don’t even think to ask about anyone else.

Sorry for the long reply and I think I’ve had a bit of a rant myself !!! I can identify with how you’re feeling and I just get frustrated and peed off with family, friends and aquaintances sometimes.

Try to keep as well as you can…keep smiling but not if you don’t feel like smiling, you’re entitled to feel grumpy and fed up if you want to …everyone on here will understand.

Take care

Anne-Marie

5

I Lynne, I am in a similar situation to you and I agree it is awful. I live with my mum and brother and my mum seems more wrapped up in gher own life and has more concer about herself than me. She never asks me how I am doing or feeling, she is more concerened with how it will affect her and with me being in recipt of benefits like the cold weather benefit In got when we had the cold front in Janurary. she said that she hoped that woudnt stop her cold weather payment.

she was the same when my dad was DX with cancer she seemed more worried about herself and still shouted at him

The last thing I can remember my dad saying to me when she had stormed out of the house after having a go at him was

“She will be the end of me before this is” Pointing to the tumor in his head

I do get on very well with my dads cousin who I have always called my aunt and feel a lot closer to her that I do to my own mum who I have never got along with

I can tell my cousin/aunt anything and talk to her like I would a friend, she is a lot more concerened about me than my own mum and she will pass on details about me to other family members who will not talk to my mum.

To put things into perspective half the family (dad’s half) hate my mum and doin’t want anything to do with us, I one the other hand like that side of the family and they like me so that causes a rift between me & mum.

My mum will also not take me to the hospital for scans and other treatments because they mean a drive on the motorway which she wont do.

The doctor has told her to stop smoking as it affects both my MS and my rhinitus and she refuses to stop.

I know this post is not really offering any comfort sorry I just thought I let you know I understand how you feel and that ended up unleasing a rant of my own lol

Hope things work out for you and you get more sympathy from your family, are you lucky enough to have someone in your family that is sympathetic?

Take care

6

You’re not alone.

I saw both my brother and my sister recently, for the first time in several months. Neither mentioned I’m not well, or asked how I’m doing.

I don’t think my brother has EVER mentioned it. I think the closest he’s ever got to acknowledging I have MS was saying somewhere was “an easy walk”, but then adding: “Oh. Maybe not for you.”

Welcome to the club.

Tina

7

Hi Lynne

It’s early days for you at present, don’t mean to sound negative but things ain’t gonna get any easier. You sound a bit like me, I have always been the one who cares for other folk and helps with their problems, now I need support and help it’s becoming harder to get it. The MS outings (the only time I really enjoy myself), are on Sundays and my husband works. It’s been difficult this year to find people to accompany me. I was working full time, with a part time job as well as cooking, cleaning and shopping. All that finished when I became so ill with MS. Hard work does take its toll. You need to have some support from your family, especially your husband. He needs to understand that you are unable to do as much as you used to. Personally hate to nagg, so things don’t get done until my husband decides to do them or they don’t get done at all.

My MS society locally do help as my friends there at least understand what I’m going through. I did take an MS essentials booklet to show my dad, as he couldn’t understand why I have bladder problems; he thought it should only affect people with prostrate problems which he has. Showing him that diagram does seemed to have worked as he now understands why I need to drink lots, self catheterise and have infections occasionally. It’s an uphill battle with people but unless you tell them how you are feeling how are they going to know. After all you probably look ok to them.

Good luck

Take care

Wendy x

My brother annoyed me yesterday when I was suffering from the heat and he seemed surprised, can’t remember how many times I’ve tried to explain that PEOPLE WITH MS DON’T COPE WITH THE HEAT.

8

Thanks everyone, at least I know I’m not the only one. I guess some of the problem is that normally you don’t look ‘ill’. This humid weather hasn’t helped either. I guess it still is very early days and it’s difficult to get your head around something that is going to affect the rest of your life.

Anyway, teeth gritted for the weekend with the in laws. At least I can have a moan in the car on the way home!

Lynne x

9

Hi Lynne, I understand how you are feeling but I think it’s important you also keep sight of the fact that your family may not know how to approach your ms. Remember this is new for them too. You obviously feel very strongly and may be inadvertently be giving off signals to them. I’ve had ms for 7 years and up until recently have been relatively symptom free. My family and friends treat me as they always have and I’m greatful for that. I’m relapsing badly just now and have to say I prefer folk not to keep asking me how I am or if I’m ok. I guess what I’m trying to say is we’re all different and if you want your family to behave differently towards you then an open and honest conversation is probably the best way of clearing the air. Hope things get better for you

10

hi lynne

have you tried offering some new information to the wider family? such as, i’m going to try hydrotherapy… i’m thinking of trying LDN… i’m going to join a gym because if i don’t strengthen my legs i’ll end up in a wheelchair sooner.

just saying it in a way that doesnt ask for their pity or help, just getting the information out there.

as for my husband (hah!) he likes the attention he gets from people asking him how i am, but doesnt do anything to help.

i’ve got a cleaner once a week and i dont know how i would manage without her. i dont know WHY i managed without when i was working all hours and bringing up 2 sons.

in fact i’ve become good at being selfish.

good luck

carole xxxxxx

11

It may be worth asking your husband if these relatives ask him how you are rather than ask you directly. If they do, they may feel this ‘enquiring by proxy’ is perfectly alright. Of course it’s not but if this is what is happening you should ask you husband to tell them to ask you directly.

12

Hi Lynne. I’ve had MS for 50 years now (20 years undiagnosed) and had to look after my mother for most of that time, so no chance of a social life or a family of my own. When I finally got my dx I made the mistake of telling my mother as I was so relieved not to be called a hypochondriac any more and thought she’d be pleased for me. On the contrary, she had hysterics and said SHE couldn’t cope with it, though nothing had changed with my health. At the time I thought she was terribly selfish. She went into denial and still expected me to wait on her hand and foot and refused to find out anything about MS. My point is this. Some years later, after she died, my brother moved in with me and expected me to cook, clean etc for him, which I stupidly did, making my condition worse. BUT he then had a heart-attack, then another, then a triple bypass which was only partially successful, and all I could think was “What on earth is going to happen to ME” He was getting medical attention, but I wasn’t, and I was scared to death. So now I can understand how lonely and frightened my mother was, contemplating living with an invalid. People can’t help thinking of themselves first, and trying to pretend that nothing bad is happening to disrupt their lives. It doesn’t mean they don’t care - they’re just frightened of the unknown, and hoping that by ignoring it, it will go away. Hope this helps a bit. Belinda.x