Hi everyone, Rachael and I went to the gym today for the second time and she was really good although very sore while there but pushed through and we managed to stay for 40 minutes. Came home and got showered herself which rarely happens as I usually have to assist then got into clean clothes. Had a wee nap and decided she wanted to go to Sainsbury’s which is only 100 yards away from our house. Asked if I would let her go herself (she is 16, God bless her for asking like a wee girl if it was ok to go out herself), I said she was old enough to decide these things herself. So off she went, 20 minutes later back crying and shaking. There was too many cars on the road, too many people in Sainsbury’s and too much noise and she was really scared cos she was herself and what if anything happend to her while out alone (without me), she has become very dependent on me, feels anxious when I am not around (at work, I work 9 hours a week). Is this loss of confidence normal or is it to do with her age and still needing her mum. My heart broke for her when she came home as she looked so upset and pathetic. I don’t know whether to keep encouraging her to do things alone or whether to only go out with me as she is very unstable and her balance is not the best. I just don’t know what to do for the best. Linda x
Ok Rachael has had a slight blip, from reading and replying to your previous posts I understand that she has had a really rough time of it lately. I and also understand that you are very concerned about her well being (you are her Mum that is your job!!)
I think the important thing is that you don’t let this determine the rest of her life. I’m 32 and I always need my Mum, (usually nothing MS related). Personally I think you should encourage her to continue to do things on her own at her own pace.
I think that the loss of confidence at her age after what she has been through is probably normal…but with help and support will come back and develop.
You need to focus on and point out the positives, Gym for the second successful time, showering alone etc. She has done really well and ok Sainsburys didn’t work out as planned but so what there will be another time to go and it WILL be a success.
I used to suffer from agoraphobia (before the whole MS thing) I wouldn’t leave the house and just going to the garden gate was a huge achievement for me, through all the various therapys, psychologists and psychiatrists I had to see I learnt never to dwell on any negatives, always look for and at the positives.(Today you achieved the gym, showering etc.) I really do think this only a blip and she will get over it quickly, She is lucky to have a supportive family and will be fine.
Bit of a cliche but…tomorrow is another day
Take care and continue in being strong
my husband jumps to help as soon as i try to do anything so much so id panic when he wasnt near me. ive asked him to stay back a bit and only help if i ask so i can try that bit harder and try to get a bit more confident.
I saw the post and thought I’d comment as it may put your mind at rest. When I’m in a relapse or coming out of a relapse I don’t do well in crowds or when there’s too many things to concentrate on at once. It’s like sensory over load to me and my brain can’t handle it all. I went up to London last year to watch a show and thought I’d be fine as wasnt in a relapse. Got up there ok and watched the show fine but when I came out and everyone was coming out at the same time and it was dark outside - my brain just went nuts with sensory over load and I had a really tough time. Since then haven’t gone up to London and won’t as for want it to be the same thing. So I think from my experience it seems like it could have been sensory overload for Rachael. It’s important to keep encouraging her to do things bit by bit and at her pace as eventually things will become easier. Karina x
Hi guys, I can see things that match us in all 3 of your replies, I have got to keep encouraging her to do more things by herself and encourage her when things seem to be scarey that never were before. I also have to stop jumping up as soon as she moves to see if I can help or do it for her and just keep her in my view and try and do it without her noticing so she realises she can get back to normal. The sensory overload thing is spot on, never knew about that or even heard of it but that is exactly what she described. I can’t relate to that but now you have brought it to my attention I will take care to not push her too much into doing things that maybe she can’t handle but will with baby steps. Linda x
I think we all struggle with different things, like Joy says, I’ve had to say to my husbad “I’ll ask” as he would take things out of my hands whilst I was trying to load the dishwasher, to do it for me but I will always do as much as I can, when I can and for as long as I can.
The loss of independence is incredible difficult to deal with, it’s bad enough that he has to do all the cooking and with my wobbliness he’s always carries the plate and hands it to me (I don’t grumble about that, cos if I’m hungry, the last thing I was is dinner on the floor let alone having to deal with the clean-up operation).
I guess what I’m trying to say is we have to find out for ourselves what’s good and what isn’t - I am only just really learning what’s realistic to expect I can do around the house for example, I can sort out the washing, and if my walking’s not too bad I can carry the basket downstairs BUT loading the washing machine actually does mean I’ll need to sit on the floor, hence struggle to get up again and so on. I have even ended up with washing liquid all over one arm just trying to put the little plastic thing on top of the laundry!
Like Karina says, it’s sometimes like a complete overload when there’s a lot going on and that can make things hard as I guess we’re all still learning what’s realistic to expect and what isn’t. We don’t want to be treated like babies on the one hand, BUT having a cup of tea carried from one room to another for me is bliss and sometimes I would love him to offer to put my socks on for me
Oh, and one of the reasons I got a walking stick was so I didn’t bump into anyone as well as to give me the obvious stability. Since I’ve got it I won’t leave the house without, admittedly largely because I need it now BUT people giving you a wider birth is a godsend, seriously.
So don’t be too disheartened, there’s a lot of learning for Rachel to do and you too.
I’m going out with a friend for lunch today, it’s the first time I’d have gone out without my husband since I was diagnosed - so I’m as equally excited and scared… I am already planning where to park and all the little details like that, I don’t want her to find it a tough experience that she won’t want to repeat!
Good luck today Sonia, hope you have a good time at lunch. I have to carry Rachaels dinner to her too as the few times she has carried it, it ends up off the plate onto her tray or worse onto the floor and sometimes she is paying so much attention to keeping her tray straight she walks into the wall or door. We usually make a joke about it and laugh so she does not feel bad about it. I get her to do little things around the house, some days she is good enough to empty the dishwasher, other days if she were to bend over she would end up head first in the dishwasher, I even get her to hoover her room and tidy it which being a teenager is a big thing never mind a teenager with MS. Some days she seems determined to do everything herself and others she wants wrapped in cotton wool. I guess it’s going to be hard to work out how much cotton wool and how much kicking up the bum there should be. Linda x
What a bout this for a suggestion.
As you say rachel is depending so much on you, but it is great that she did at least make the effort to go out alone, even tho
it wasnt a good experience for her.
So howabout she goes out with a friend? Maybe ring someone and arrange to meet half way between the house and the destination?
Perhaps that will work. What do you think?
hi rachaels mum
i agree with karina - sensory overload happens to even those of us who are older and have had ms longer.
i get it even in familiar places.
definitely if i’m in relapse but also if i’m a bit tired.
rachael will work out for herself what she can cope with and with support from her wonderful mum and her friends she will rise above it.
have a lovely evening with your daughter watching telly or whatever you like
Thanks Poll and Carole, she has been out with friends a couple of times, I drive her to their house and go and pick her up or they come and pick her up and drive her back (her friends are older and one drives). She manages a couple of hours but then wants to come home as she starts feeling anxious and even with her friends (there are 4 of them) she feels overwhelmed sometimes. The trouble there is these are friends from college, we moved to the town we live in last year and it’s in a different Shire so all her old friends are too far away and these girls because they all met at college all meet together to catch up and go for lunch or have a wee night in so they don’t ever just meet one on one. The last time they met up which was about 3 weeks ago she was supposed to stay over but ended up coming home as she was just too scared to be away from me for so long. Bless her wee heart. I know it will get better, she just has to keep trying. My fear for the college friends is that they all go back to college next month and she doesn’t so they will eventually move on and she will be left behind and end up with absolutely no friends. Tonight is a night for nibbles, rent a movie, blankets on the couch. Linda x
I had a lovely lunch by the way so thank you/ My friend loved where we went and is taking me out for an evening thing in a couple of weeks time as she said she had no idea why I had been fretting about it
So yes, Polly’s suggestion is a good one, get a friend involved
The Gym AND Sainbury’ s (and a shower) That’s where the problem lay.
I know you said that Rachel had a nap in-between but unfortunately a little nap is often not enough. You can feel OK when you first wake up but soon discover that muscles and mind are still fatigued.
I would suggest trying Sainsburys again first thing in the morning. It will be quiet and the day’s energy will not yet be sapped.
It’s really cr*p living your life like this but for the time being, until Rachel is out of her relapse it may be as well to think of only one thing a day. For example if I am going out in the afternoon I don’t walk the dog in the morning and I get showered the night before. (Shower and then bed is what works best for me – I can be pooped out between the sheets!)It feels naff to do so little but honestly its better to do one thing and enjoy it than 2 or 3 and experience fear and failure.
A week last Moday I was forced to do too much and it took 10 days to get back to anything like normal.
It will get better as you get into the rhythm.
Yeh, Rachel needs to pace herself…so as not to tire her out doing too much.
Somehow you need to get her used to being safe with other folk and not need you so much.
Sorry, but that sounds harsh, yet somehow it makes sense…yeh?
Hope it hasnt upset you.
I went on hols with 2 carers for first time in May. I always thought I needed to be near hubby, but I did better than I expected.
I got talking to a young man who said it was his first holiday without his mum. he also did better than he thought…and so did his mum.
Good idea about pacing herself, she felt ok so went full pelt into doing as much as possible as she has felt so bad for so long. Guess we will learn as we go. I really want her not to be so dependent on me, not because I don’t want to care for her but I know for her sake she needs to break the umbilical cord at some time. She is talking of going on holiday next year with her college friends, fingers crossed they don’t change their minds as she talks about it a lot, she is full of what they will do, where they will go then tries to spend a night with them and comes home because she is anxious. Hopefully by this time next year she will have her confidence back and I will tearfully be waving her off on her first girly holiday. Thanks again, you are all life savers. Things are a little tough on the home front at the moment, my husband and I are not talking as we argued last night over something and nothing. Both of us are on pins and so upset and worried we have taken it out on each other. We have managed to one be up and the other down since her diagnosis but this weekend both of us were down and looking for something or someone to take it out on. Feel very alone. Linda x
Oh Linda, this has put even more pressure on your whole family.
My hubby and I were just talking about how pets can cause a rift between close couples. This is because my carer was heart broken yesterday. her hubby brought a border collie home, as a surprise for the family. It was just a pup. despite laying down rules for the dog, children and hubby re the dog`s routine, it has fallen flat. The dog has chewed furniture, attacked the cat, eaten plugs in sockets! Other stuff has happened too. Yet my carer loves this dog very much. Yesterday she gave it to a neighbour of mine, when her hubby and sons said they didnt want it anymore. When she got home, they were all crying and wanted her to get the dog back! She did so and upset the new owner! Today I found the name of a good trainer and she is contacting him.
I know this is a diversion from your problems, but it is just a story to prove how families can fall out over problems…when everyone is pulling in a different direction.
Are you in a carers association? If so, are they any help? Or if not, what about sounding them out?
Hi Poll, not talking to anyone other my hubby and you lovely people on here. My family phone to see how we are but I usually just say we are fine or Rachael not too good but all is well. I think people get compassion fatigue, so don’t want to moan all the time to them, it’s all I can think about or talk about so just end up saying very little. My mum is in a home in the late stages of Alzhiemiers so my dad has his own worries, my sister does not keep well and lives hundreds of miles away and that is my whole family. My best friend who has been my best friend for 35 years has gone quiet on me, does not phone or text or facebook me anymore, I texted her the other day to see how she was and did not mention Rachael or how I was but got nothing back. I am devastated by this. I have not told anyone this, not even my husband and just feel abandoned and alone. Other friends have said many times via facebook messages that they will call me next week, come over when they get the chance but not one of them has followed through. I don’t know how it all came to this. I just sat looking at my mum’s vacant face yesterday while she just sat staring into space, eyes drooping with sleep and the odd sounds wondering how the two people I care most about ended up with brain diseases. My mum has not remembered any of us for a few years now, is in a wheelchair and cannot talk. My beautiful daughter has MS and now me and my hubby are not talking. Wish I could run away. Linda x
Oh Linda you sound like you are having a really tough time. The ms society helpline helps people that are affected by ms - not just the people that have ms but those around us so that could be a good person to talk to. I think when it comes to ms people just don’t know how to deal with it and find it hard to deal with things and what to say etc so it could be that your friend just doesn’t know what to say and doesn’t want to say the wrong thing or upset you. It’s hard having ms but I’m sure as hell that it is just as hard for the people around us having to deal with it - along with that you’ve got your mum to think about things and that can’t be great either. I think you and your husband are probably just dealing with the stress of the situation and trying to know what the best thing to do for Rachael so that’s added pressure. It’s definitely worthwhile to speak to the helpline - also on the forum is the carers section so there’s people in similar situations as you that may be useful as a sounding board as well. Hugs x
I agree that it sounds like too much in one day. Knowing that will help and next time you and Rachael will know not to try it all in one go. Maybe program her phone with a quick dial to you just in case she has another panic attack if you haven’t already.
Try not to cut yourself off hun - speak to your GP because you have to stay healthy too. You may need to speak to a counsellor or maybe see if there is a group you can join with people in a similar predicament.
As for your best friend - maybe you need to ask her bluntly what is wrong. Maybe she is having problems with something too and is scared to add to yours so ask her if you have missed something.
I wish I could give you a huge hug hun but you’ll have to settle for lots for electronic ones.
Take care of yourself
Oh Linda. This must be so hard for you.
I just wanted to send you ((((hugs)))). I wish I could do more to make it all better for you.
Just wanted to send a <> too. You’ve already had lots of good advice. I just hope things start to settle down for Rachael soon.
Do you have a local branch of the MS Society? They usually have a carer’s meeting once a month and I just thought you could maybe chat to other carers who understand how you feel. You can check by using the Near Me section on your Homepage. Just a thought …