Hi, my 16 year old daughter was diagnosed last month with M.S. She has had 4 relapses in 6 months which I think led to the quick diagnosis as the 3rd one was a doozie which landed her in hospital for over 2 weeks. She had a sensory relapse 2 weeks ago, had steroids and started on rebif but during the relapse I had to help her in and out of shower which is over the bath. Our bath is a high slipper shape bath with mouded feet which give it even more height. She was mortified that I had to help her into shower and wash her hair for her but she was so weak she had to sit down and then couldn’t get back up so I had to help her out and dry her off which mortified her even more. To try and save her feelings I got a builder in to price taking the bath out and replacing it with a shower cubicle. She is being resistant as she is not disabled yet (her words). Am I wrong to go ahead with this as I am trying to really spare her feelings on one hand but feel as if I am maybe going to make her feel worse by trying to future proof the house for her? Linda x
Having nursed my father with ms for 20 years and recently diagnosed with RRMS I can see both sides of your situation. Your daughter will be completely overwhelmed with her illness, just trying to get better. Hope and future hope is incredibly important to someone with ms. As soon as we put in place disability help for my father his hope faded and he deteriorated. After two massive relapses making me Bed bound for 6 months I have to see that I will get better from relapses so haven’t put in stairlifts showers etc as they would be a constant reminder that I will not get better. I am determined to live as best I can. Many people told me I was in denial and yes I prob was and still am to a certain degree. Be patient, be kind, don’t rush her into such life altering changes. Let her come to terms with her situation. Get a good counsellor, let her talk about her fears to a stranger and accept she will not want to burden you with them. She is young, be aware most teenagers are very selfish ( I have two at home). She is only thinking about herself. Keep telling her things will get better, repeat it over and over and over. If you are struggling to help her tell her and ask her to be involved in the decision making. She will feel like she has lost control of her body, lost control of her life and future. She will be very scared. She has to push herself to get back to a good base. Her body needs time to heal, she needs a goal, a challenge, give her an incentive to get better. I really feel for you and if you need to talk you can private message me Sending all my love and thinking of you. Be positive… Xxxxxxx
good on you for wanting to provide safe bathroom for your daughter.
to spare her feelings could you not say that you want the bathroom changing because you’ve started to have difficulties yourself. play the old age card.
i had a shocking bad experience when i was first diagnosed. i got out of a nice warm bath but it must have been warmer than i realised. i got a towel but then my legs went from under me and i burst through the door and landed naked at my sons feet. (he was 20 at the time)
he was great though, putting a towel over me and bringing my bathrobe.
i had a visit from an OT and she told me not to have baths, and arranged for handrails in the shower.
Hi guys and thanks, am thinking of playing old age card as I actually do have a bad back and am 48 so to my daughter I am ancient. Did mention to builder about getting seat attached to wall in shower incase she needed to sit down, he said that would be no problem but maybe that is a step too far at this point. She is being very brave and our family have a sick sense of humour, there is very little we don’t joke and laugh about. We make jokes about her symptoms which she joins in with and laughs about and even makes jokes herself but inside I am screaming, I can only imagine how she must be feeling inside. I try to let her take control of her disease by she has to remember when to inject, when her appointments are and let her talk to M.S. nurse although I am there as back up if she does forget (which she has not so far) as I hope that as she has no control over M.S. she has some control in her life. She had to leave college as she has tremors and was doing a beauty course and cannot control her hands to do eyelashes, nails, make up and waxing etc. She just came to tell me there that she has put her nail equipment on a buy and sell sight on facebook. I smiled and said great, hope it sells but again am raging at the unfairness of it all. She is so young and her life has not even started properly yet. Linda x
While I can see hop along’s point about aids affecting her (?) state of mind I tend to have the other view. I think that the right aids can help ease life along. Much of MS is putting energy into the right things and not struggling with stuff that you don’t need to.
I have an acquaintance who considers it a badge of honor to struggle round Sainsbury’s on her two crutches – not me, I glide along in my wheelchair and have some umph at the end of it
A walk in shower is an easy aid to have. (I wouldn’t put a seat in until/if its needed) My old house had a bath and a shower stall in a really small space. Could you possibly have both and then your daughter could choose, as she likes. I used a shower for years because he bath was too hard but I wouldn’t have classed myself as disabled. A shower cabinet is a very un-disabled thing to have actually its quite “normal”
I am with hopalong on aids. I have rrms too, and this house is not geared up for me at my worst. It is geared up for me having got as much better as I am going to from the relapses. Maybe see how well your girl is when she has got over this horrible flurry of relapses and knows what she is left with in therms of residual disability (if any)? There is much to be said for dealing with whatever comes along (and looks as though it is going to stay) but not trying to see too far into the future. Psychologically, a light touch on this sort of stuff is probably good. This is so hard for you all, all this. I am so sorry. Alison
You could try some non permanent solutions - a stool that you put in the shower for her to sit on that is just for use on “bad” days, grab handles that stick by suction to the tiles, although I have never used these myself and I’m not sure how well they stick. Hot baths and showers can cause symptoms to get worse for a little while (my legs don’t work when I get too hot) so check the shower temperature setting. If she prefers a bath then a bath thermometer is a cheap easy solution - I have a digital one that floats in the bath and is meant for babies.
hi rachels mum
i understand using humour as a way to cope.
early on in my ms adventure i took to singing that ian dury song ‘spasticus autisticus’
on one occasion i remembered the bins needed to be put out at 2.00 am
it had been snowing and it was really difficult, i was managing until i hit a very slippy patch.
“i’m spasticus autisticus” made me laugh.
must have looked a right nutter at 2.00am in pajamas singing and laughing!!
i hope you manage to find a solution.
I’m with Alison and Floopy.
I am long grown-up and living on my own, but I have a persistent disagreement with my mum over this. If she had her way, I’d already be moved into a bungalow or ground-floor flat (anything without stairs), and surrounded by disability paraphernalia “just in case”.
Now maybe I’m being irresponsible, maybe I’m in denial, whatever - but I do NOT want to live like that - reminders of disability everywhere, before it’s even happened. I do realise that if I wake up one morning and can’t walk, it will be a bit late then, to wonder how I’m going to manage bath and stairs. However, so far, that hasn’t happened, and I refuse to live my life as if it already has.
I really love my baths - especially as I get a lot of aches and pains from MS. I would have been devastated if someone was here ripping the bath out, just two months after diagnosis, on the assumption my future doesn’t include baths. I would try all sorts of compromise - rails, a step to help me get in and out - even a hoist to lower me in - before I’d give up the bath.
This is a very personal view, and obviously some people would prefer the assurance of knowing they’re already geared up for the worst. But I personally would find it demoralising. IF I’m lucky, I may never need any of this stuff. But if I do, I’ll have to deal with it when it comes.
Reading through the replys I think I can see where my different attitude comes from. I have never had relapses and subsequent remissions. I’m dx as SP now but I think I may have been PP all along. Consequently I’ve never expected to get better from any symptoms that occur. If something happens it’s there forever. So, I’m about to take a U turn and agree with everyone who has suggested “wait and see”
Hi all and thanks for ideas and advice, I think I will take the wait and see approach. My husband is also in that camp. She loves baths but my concern for her modesty and fear of her falling and banging her head off the radiator or toilet were uppermost in my mind. I am preparing for the worst while trying to hope for the best and I think I need to change that to preparing for the best too. Even though my husband is in the camp of waiting and seeing and not doing anything to make her think she is disabled he was talking about changing his car from a sports 2 door to a more grown up 4 door car so she does not need to clamber into the back seat so although he is trying to talk me down I realise he is also on high alert inside his own head and is trying to hide it from me. Will leave it a while longer, who knows maybe the rebif will work for her and there is light at the end of the tunnel. Thanks again guys. Linda x
I am most likely ppms and it is a denial thing, I don’t “expect” to get better now but you still “hope” all the time.
On the one hand I’m not disabled and on the other, I am no longer independent so yes, I suppose I am!
It’s that which makes me say, get shot of the bath… I hate looking at the wretched thing knowing that if I had that lovely hot bath that I love so much, Uthoffs means I probably won’t be able to stand after, might not be able to get out and won’t be able to dry my feet that’s for sure.
Playing the “getting older” card is not a bad idea in my opinion - frankly, if someone made my life easier by other means than what I needed, I’d probably accept it It’s so easy to get angry with MS and how many appalling things you have to face up to that anything that happens ‘by chance’ would be a real bonus, in my book anyway.
Good luck and sympathies too, as I can understand how heartbreaking this is for you. I’m 43 and my Mum keeps saying how brave I am and it sets me off in tears all the time. My step-daughter is 21 and she’s being so supportive to me that it hurts, I don’t want her to have such worries when she’s at Uni.
l have not been able to get into or out of a bath safely for years. But apart from that l much prefer a shower. l love the feeling of the water over my shoulders and back - and how refreshed l feel afterwards. After a bath l just feel exhausted - and good for nothing. Something l do like to do is gradually turn the temperature down until its nearly cold for a final rinse. This really perks up your muscles. l know athletes sit in baths of ice to rest and repair tired muscles - l have not gone that far - but a very cool rinse done gradually so you do not ‘yelp’ does the trick. Showers are best in the morning to spark you up - baths are best before bed to help you sleep. With the cost of water/gas/electric a shower is much more economic. You can have about 5 showers to a bath. l have a grab rail to hold onto - and my rollator parked just outside to reach to help me out or to sit on.
My daughter has had a new bathroom - and she has not had a bath put back in - but a large double shower. l think most youngsters prefer a shower - as she says ’ who wants to sit in their own dirty water’.