To ask for practical advice on adjusting to (my) failing mobility?

[OvertiredandConfused]

I am in my late 40s and have Multiple Sclerosis. I’m fortunate in that I don’t suffer with fatigue or any cognitive dysfunction. However, I am struggling increasingly with my mobility.

Without going into huge detail, I don’t need advice about resting or pain management or talking to medical professionals. However, what I do need to do is come to terms with the fact that I’m losing some of my physical independence and work out how to make the necessary adaptations.

I have a busy, demanding senior job that I love and do really well. At work, I cope pretty well with some low-level practical help from supportive colleagues. But work is easy. I drive to my office, take a few steps and am at my desk and I don’t have to move more than a handful of steps from one meeting to another during the day.

Where I really struggle is at home. I have to plan my outfit for the day based on whether or not I can lift my legs enough to put on trousers or tights. I can’t put on my own jewellery and I don’t feel confident showering when I’m alone in the house.

Getting up and down stairs is difficult and I certainly can’t manage it carrying a drink. Similarly, I can’t load or unload the dishwasher, washing machine or tumble dryer. Standing to prepare meals for more than five minutes is difficult. Earlier this evening I got stuck on the floor because I got down to turn on the fire.

If I want to go shopping I have to hire a mobility scooter. I have my groceries delivered because pushing the trolley around supermarkets is beyond me most days. I can only walk about 100 yards before my left leg pretty much gives up.

Emotionally, it’s quite hard to rationalise the difference between the me at work and me at home. I think part of this is because solutions are easy to find at work and I am at the top of my game professionally but I have no idea what to do at home.

Any practical suggestions please MN?

No advice op but i wish you well. I have struggled to come to terms with my own declining health and its hard. I have lost me. X

OP, I saw someone in one of these amazing lightweight scooters the other day.... www.travelscoot.com/scooters.html

It was so cool, and I very much want one. Might not be right for you, but worth a look. She was evangelical about it, and carries cards to give out to people who ask because she gets stopped a lot!

I've been looking for ages for something that's practical to use. It was amazing how fast and easy this one folds up, and how light it is. Serious scooter envy here.

my aunt had quite a few adaptions made to her home particularly in her kitchen. so she has several bits of worktop with no cuboard under that she can sit at and some bits that are lower so she can use a wheelchair.

All her sockets are really high up too.

She made the move to a bungalow though as early in her diagnosis as she could as it was clear it would be necessary.

Sending you all the very best

I don't have MS but I do have a physical disability.

If you’re like me (senior high pressure job) you probably expend all your energy at work, leaving little spare for home and pleasure.

Sorry a lot of these assume money is no issue, but if possible… (also second the OT appointment)

Automatic car, high up car also easier to get in and out of. As many parking sensors etc as possible.
Food delivery - make sure they deliver it to your kitchen counter so you don’t have to bend to floor (may need reminding)
Picky up stick is invaluable. You will need multiple picky up sticks as they will always be in the wrong room.
Fold down seat in the shower
Prep food sitting down
Make sure your knives are very sharp, saves a lot of cutting effort
Buy pre-prepared chopped onions, butternut squash, grated cheese etc, rather than fighting with them
Kettle on two floors?
How about a boiling water tap, rather than a kettle, then nothing to lift
Measuring jugs that allow you to see the quantity from above, rather than bending to read the side
Sometimes I carry things up and down floors in a rucksack to save journeys and because when my proprioception is really bad I drop stuff
Buy everything for lightness - hairdryer, kindle e-reader instead of books, laptop, kitchen pans,
Split tasks over days - wash hair one day, straighten it the next
Fairly high bed, so you don’t have to haul yourself out
If you struggle turning over then silk sheets are slidey and helpful, as are plastic bags under bottoms to move in and out of the car.
Shelf or hook at waist height near door to keep bag on, high up shoe shelves in hallway
Somewhere in hall you can sit to put shoes on
Slip on shoes
Shower cubicle or wetroom rather than a bath with an edge you have to get over
Cleaner and ironing service. Don’t waste your valuable energy by doing these tasks.
If you have children, turn them into picker uppers, extractors of laundry from tumble dryer etc.
Internal post cage thingy, to avoid the need to pick post off the floor
Rather a luxury but when I was really struggling I trained my hair to only need washing every 1.5-2 weeks (by increasing the interval slightly each time), and then had a wash and blow dry at the hairdresser. Dry shampoo also helpful.
Food planning with easy options for bad days and a couple of more complicated recipes for when you have the energy. If you use a lot of frozen veg then it doesn’t really matter what day you cook what. Also when you are feeling ok, make double quantities and freeze for really bad days.
I half wish I’d got an electric adjustable bed
If travelling then book special assistance. It can be crappy, but it will tend to get you there with more energy left. My physio persuaded me to use it as I don’t necessarily need it on the day, but if I don’t use it then it will adversely affect me for days. Prepare to feel like a parcel though.
Another tip from my physio is, if going on public transport say, take my crutches, or at least one. I look far too young and healthy to be afforded any consideration otherwise. If I end up standing in queues, I’ll end up ill even if I start the day ok. A visible sign you might need help helps to avoid this payback.

Good luck!

Wow!

Thank you all. Lots of stuff for me to sift though, and I will I promise.

I have relapsing remitting MS, although it MAY be transitioning to secondary progressive.

I have also had lemtrada. The first round was fabulous and I had 10 great months but I relapsed just before the second round and haven’t really remitted since then, almost a year ago. There are limited options for DMDs now.

I’ll get in touch with my local MS Centre again and try and get a specialist OT referral.

My DH and DC (14 and 16) are finding it hard. Their coping mechanism is basically making sure nothing changes. I often think (sometimes seriously) that living by myself in a ground floor flat would be easier!

I had an OT assessment done through the HA I am with.
They fitted grab rails in the shower, grab rails next to the toilet, gave me a raised toilet seat, and offered a walk in shower (which I have declined for the moment)

Have you thought about a trolley with wheels, to push a cup of tea and some food on to get from the kitchen to where you are eating- obviously helps then with your balance too.
Using grab sticks to pick up items.
Stair lift
Feet raisers under the chairs
A purch stool for in the kitchen

Oh and I was always one to cook everything from scratch. I've learnt now that ready meals are fine, as long as everyone fed.
But also rope in everyone with the cooking- I find that hard as I tend to micro manage and annoy everyone! But it is actually a really good skill for the kids.
I too second buying ready chopped veg etc- anything that makes life easier.
Also I forget the name, but you can by a piece of equipment that helps you put on your shoes if you have difficulty doing this.

"My DH and DC (14 and 16) are finding it hard. Their coping mechanism is basically making sure nothing changes. I often think (sometimes seriously) that living by myself in a ground floor flat would be easier!"

I can understand why that would be serious. Good luck!

I understand that Op about the family finding it hard.
I am 'lucky' that I do live in a ground floor apartment on my own as my marriage failed due to my failing health.
My adult DCs find it very frustrating that I am no longer the old me!

I am very independent and have geared myself up to take care of myself but you're damned if you do and damned if you don't when it comes to family's expectations.

Good Luck OP

my DH and DC are finding it hard

Sorry to hear that. I guess my mum got ill when I was so young(7) I just grew up thinking it was normal. I bet they feel a little helpless and unsure what they can do. Maybe if you delegate jobs to them they will feel more useful?? E.g. You sit and chat to them about their day while overseeing them making dinner?

Slightly different in that I have a chronic pain condition that can leave me wiped out but things like a properly adjusted task chair (RH Logic 400 w/headrest), adjustable desk and footrest made a huge difference to me being able to actually sit at a desk and do my job.

At home I have a shower chair, kitchen stool although I do all food prep sat down at the table, induction hob and grabbers when bending isn't happening. A decent bed has made all the difference to me I have a memory foam mattress topper as well.

One thing I do with my trousers is I have 2 of those clippy keychain things attached to a length of ribbon. When bending down to put them on ain't happening I clip the keychain to the waistband loops and use the ribbon to work my trousers up.

And those pre-boxed dinner kits can be a lifesaver albeit an expensive one. Everything pre portioned and instructions fairly clear for when I'm in a brain fog either because I'm tired or spaced out on meds.

I also bribe pay the dc to do the jobs I can't. Hoovering is a pound a room and with a Hoover upstairs and downstairs they fight over who gets the most money.

It sounds like you are coping really well OP my motability is at best shocking and I have found a few things you have said to ring very true the whole what clothes to wear ect. Leggings are my new best friend a buy a new pair every few weeks so they stay 'black' enough to be smart at work. I also found a grabber helps as I can't bend and it helps be pick stuff off the floor that I've dropped as well as getting clothes out of the washing machine ect. I find keeping everything reasonably at my height works well as I'm not bending or stretching too much in the house. I also plan what I'm going to do if I'm having a bad day and set my self little goals thoughout the day. I would do more online grocery shopping but I find it a bit too dear as I am an aldi shopper normally. Do you have a blue badge?

With the DC, package it that you're teaching them life skills. I work for a uni and I can assure you that our students would find life a lot easier if mum had taught them how to cook and use a washing machine when they were 16!

Do your dc help you at all in a caring way OP? My dc are 8 and 10 and it is so hard for them, they aren't classed as young carers because I have paid carers coming in, but they both care for me and do things a child should never need to do for their Mother. In a way, I am lucky that they were so young when my decline began, my ten-year-old ds is autistic and he would have really struggled with that much change if it were happening now.

If you don't have carers in yet, it might be worth contacting the Young Carers charity, they take young carers out regularly and they get a chance to make friends with other young carers. I know of several families where their children get great support from their young carers worker. Do their school know about your M.S? My youngest really worries about me and with my health being pretty awful recently that has increased. We have informed her school so they can keep an eye on her and support her if need be. Perhaps your dc's school can refer your dc for counselling? It's awful saying this, but it's almost like a repetitive grief cycle, mix that in with hormones and it must be very difficult for all of you!

I know that my dh really struggled with anger and resentment, his/ our life/lives changed so dramatically and he struggled greatly with it. He felt so guilty for feeling that way too. I insisted that he seek counselling (which he needed anyway to cope with going NC with his narcissistic parents who felt he should up and leave me because of my illness) and it really helped, he has had three different sets of counselling through our local g.p/ community psychologist. It is normal/ understandable for carers to go through feelings of resentment and anger, they need a release in a non-judgemental environment. My dh is fantastic with me now, our marriage has only grown stronger through our trials. It is hard at times, but we make the most of the lot we have been given and try to find laughter where we can.

My DD is 16 and helps intermittently. DS is 14 and will have a full on temper tantrum if I have the temerity to do so much to ask him to set the table. The timing of this rapid decline has been particularly bad for him. What would a be thing to accept anyway has come just at the point when he is at a challenging and badtempered age. He is, at heart, a really decent and caring lad but he simply seems unable to make any adjustments at home. And I don’t think it helps that he sees my DH coping by assuming “business as usual“. However, ultimately I don’t think that they are young carers. I’m not at the stage where I really need them to care for me but I probably do need them to do more around the home generally then the majority of their friends.

Some of the things suggested I am already doing – I have a blue badge, I buy mainly pre-prepared veg and get several meals a week from Cook so they just need to be put into the oven. However, there is more that I could be doing to make my physical environment easier. Some of these are relatively straightforward and I am going to order myself a couple of grabbers for example.

However, the bigger adaptations - better bed, a comfortable chair (higher and more supportive) and stool that I can use in the living room, rearranging the kitchen, possibly significant changes to the bathroom (that we only had redone a few weeks before my big relapse after three years of saving to do it)– are not just down to me and I don’t think my DH is ready for most of them but I am motivated to try the conversation again.

This thread has really helped. I appreciate all suggestions and advice. Thank you

Apart from all the practical stuff, have you thought about some counselling to talk about the changes you are going through? When I acquired a disability I found I was having to tell everyone ''oh yes, I'm coping fine' and minimise the effects on me when actually I wanted to rage about the unfairness of it all. I did counselling via email (as carving out time to physically go to counselling alongside physio, drs appointments, and of course trying to work snd parent) with Spokzpeople who specialise in counselling around disability. I felt my counsellor really got to the heart of things very quickly and it helped me transition to my new normal and develop coping strategies around people commenting on things etc

It might help your DH (and maybe your kids) to hear from a professional like an OT what you actually need to be safe and independent.

Just wanted to update and say thank you, especially to CMOTDibbler. I have started counselling with Spokzpeople. I’m hoping we’ll involve my family a bit further down the line. I’m also starting to investigate adaptations at home and am waiting for an OT assessment.

Still struggling to decide what type of mobility aid will help most outside of the house though.