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?

Has your Concil been in touch regarding the Occupational Therapist coming to you?
That should have happened.

I have chronic mobility issues which are degenerative and bring on a load of other complications and my council were fantastic. (We own our own home)

If you see a physiotherapist they should be anle to advise of any equipment or aids you can use.

I second seeing if you can get an OT assessment

however, if you are wanting to purchase equipment privately there are a number of good websites which provide a wide range of products.

One that I can remember the name of off the top of my head is

www.waysandmeans.co.uk/

but there are loads of others out there.

What type of MS do you have?

Sorry to hear you are facing some struggles OP. I agree with PP. You need a full assessment of your needs at home from an Occupational Therapist (and discuss possible carer help) . They will be able to recommend aids and adaptations to help you in your home. You should be able to arrange this via social work dept or possibly your GP surgery. Good luck.

Only one small one sorry, but I have some classic and not too spiky jewellery that I just put on and leave in for a few weeks at a time.

I would second an OT if only because this is their expert area

But would things like an eye level oven, counter top dishwasher help in the kitchen - worksurfaces that rise & fall in the kitchen exist so you can sit at them or stand (maybe supported by a walker/standing support)

Grab rails around the house

Could you have remote fire controls - my grandparents had one at waist level to control a gas fire

Does the bathroom need to be a wetroom with a bench or seat in the shower?

Maybe think how solutions could be provided for a colleague at work if they presented with these problems

I feel for you, it sounds tough. Can I ask a question? Do you feel you are still mostly trying to do everything as before, but struggling, or do you already have adapted approaches for things? You mention a mobility scooter for shopping, but not adaptations at home. Because it sounds like it might be time to look honestly at what you need to be able to do, both now and in a year or five years time, and decide what adaptations you might need in order to be able to do that, and then I guess prioritise.

There might be some quick wins... E.g. Get a flask with a shoulder strap and a cup of tea in bed is possible again, or some kind of adapted stool in the kitchen to help wihen you're cooking. Some of them might be longer term and require some investment, e.g. One of those apps that people use to adjust heating etc, or eventually a stairlift.

Maybe you have already looked into these things, but I also know that often preserving the status quo can feel like the main focus at first, but it eventually reaches a point where that becomes less effective for you, and preserving independence might look different to preserving the status quo.

I'm not an expert obviously, and I'm not going through what you're going through, but I do tend to take a fairly methodical approach to this kind of thing generally, so wondered if that might work for you.

Could you afford a live in carer/housekeeper? Or an aupair? They could study /work in the day time and help you in the evenings.

You need tools. You probably would benefit hugely from a stair lift. You certainly should have a walking stick for around the house.

You can get grabbers to pick things off the floor and from laundry basket into washing machine, and grabbers are also great for putting on trousers if you buy two.

you need to get extension leads with red switches that can extend from the fire/tv plug up to counter height.

You need a bed rail for support to push yourself out of bed and hold on to to stand for a minute. You may benefit from one in the loo and a stool in the shower.

You need an extra long shoe horn, they are surprisingly useful.

You can get most things online and most cities have a homecare supplies shop you can visit. It's a huge industry.

But the main thing you need is a referral to your community occupational therapist. good luck!

I echo everyone else, you need to see an OT. In my area you can self refer. I just had to ring adult social services and they came round. They don’t provide everything for free, but they do give some things and point you in the direction of where you can get the rest.

Good luck.

What treatment have you had? I was on crutches for two years and really struggling. Although not with fatigue either. I had Lemtrada. At first I was disappointed with it. But have been stick free for 11 months now. When I mentioned a sensory symptom to my best friend, he said he'd forgotten I had MS. Unfortunately I think my colleagues have also forgotten and my work shift
Pattern has been awful in December! Don't settle for second best DMD's!

Another person saying get gp referral to occupational therapy. They can go through all your needs at home and work. Hope you get what you need 😊

Sorry to hear this OP. My mum has MS and is also a very independent, dynamic, active woman who found it very hard to adjust to needing help.

What helped for her was finding tools to help her stay independent. That meant she was happier when they eventually installed a lift because even though it was a sign that she was no longer able to manage the stairs, it meant she could nip up and down at will with no help required. Ditto getting a motorised wheelchair for the house (one which raises to standing level has made a huge difference as she's able to access pretty much every cupboard and can prep meals from start to finish). She also found investing in a really good quality 'grabby stick' was helpful - again, no need to call anyone. And getting hand controls fitted to the car allowed her to drive alone for a lot longer.

Personally I would love her to move house to somewhere more accessible as I think this would help even more - the energy she expends on getting around tight corners / stepping into the shower etc would be better used elsewhere. Long-term I would definitely think about that.

My mum has lived with secondary progressive MS for over a decade now and although her mobility has declined, the amount of stuff she does hasn't really, purely because any time she's felt limited, she and my dad have worked together to find a solution. I think for her, seeing these sorts of aids as returning her independence rather than markers of her mobility becoming more limited was a very powerful thing. Perhaps that would also be helpful for you?

Best of luck with it.

I had to have a mobility scooter for a holiday a few years ago. I thought it would be a laugh, but it was awful. I was devastated it had got to that.

Sign up for an assessment and get assessed for a mobility allowance or whatever it is these days. I would look to have someone come in under the guide of "housekeeper" that can do the worst of the jobs.

In terms of shower - have a think about handles and also getting a stool or similar for the shower area and making sure you have good solid none slip steps for ups and downs etc. Think about having dispensers int he shower so no bending and stretching for detergents and shampoos etc. Think about having none slip shower shoes if that might help. Longer term I would think about having a wet room in - future proof a bit of independence for yourself. There are def aides for dressing - like long handled shoe horns - get clever with long handled grabbers for dressing etc. A good OH person will be able to give you loads of pointers.

As to drinks upstairs - the water from the bathroom is no different to downstairs most of the time for cold drinks, for hot get a travel kettle and a flask for milk or even a mini fridge and set up a drink station or even a teasmaid type thing. Also think about getting some of these hot water tap type kettles - ie like a mini urn - so you don't have to be lifting the kettle place cup and press button rather than lift and pour.

Is the fire a gas fire? Check with your gas man if the controls can be put higher someway. Get plug sockets put higher for ease of access as well.

OP I'm an Occupational Therapist and it sounds like you need an assessment. However I'm not an expert in MS. I recommend you visit your GP and request a referral to Neurology specific OT. There are lots of different assessments/advice/equipment that can be given and I know you say you don't want advice in regards to pain management and resting but fatigue management encompasses lots of different things. You need to prioritise what you do and not in the most obvious of ways for example can you wash pots at the sink, a few at a time? A perch stool in your kitchen might help.

In regards to your stairs, maybe 2 rails might help. Use a carrier bag hooked over your arm to carry things up. Set a little tea station up upstairs with kettle etc.

There are different dressing aids available to help with clothes. Same for showing.

Neuro OTs are best to help in your case though as some people find it difficult and demoralising to have lots of equipment in their home. Specialist advice re techniques and condition management will be useful.

Few thoughts - some of which you may already have considered, some of which might be of use. Given the references to your professional life, I'll assume you have some money to put into these things.

• drinks - can these be carried in a thermos / insulated mug to avoid spillages? If there is a tap upstairs, perhaps a kettle would be sensible up there? If lifting a kettle becomes onerous, a vi-tap will dispense boiling water at the touch of a button and is plumbed in.

• Stairs - I know you'll hate the idea but a stair lift would make your life comfortable and more practical for longer. Is there a bathroom downstairs and hence the potential to live downstairs only? Or to move while you're still able?

• Shower - can you put a plastic seat and grab rails in there so you can sit down while you shower? And / or a cubicle if you've currently got a shower over bath arrangement, or the all out option of a wet room.

• Get a cleaner in. Not a carer, a cleaner to help with household tasks that are becoming onerous!

• One older relative cooks while sitting on a breakfast bar chair to save her legs. If burning yourself is a concern, consider an induction hob.

• If there are local shops, GP etc you want to go to, buy your own mobility scooter. They can often be found cheap and nearly new in the small ads. I presume you're driving to a big shopping centre and then hiring one from shopmobility? Keep ordering groceries online - picking your battles is a very good idea!

Disclaimer: I do not have mobility issues but both parents do.

Congratulations on your work success.

Can you move house? I would want to get ahead of the game, as it were.

I would want to move to a house that replicated my work conditions (bungalow) - one that was quite future-proof. One that no one could stop me moving around in whatever the future might bring.

I'd also plan this move whilst the other part of my life (work) was going really well.

For cooking you might need to change what you are cooking a bit so there is less stand and watch over and more sit and prep - get a small table or lower some bench so you can prep sat down.

I would use slow cookers and you can prep bags of stuff for slow cooker all in one go and freeze. A job with a friend to prep?? Or again Find someone local who can do freezer prep for you - find some local networking Mums group - someone will be teaching cooking, doing batch cooking etc. Also get creative witht eh microwave - they can do so much more than steam veg and defrost things

Do you live alone, OP? My mum had lupus which compromised her mobility severely from her early 30s. As a child I always helped her on with her pants and tights before going to school (she worked, like you, for as long as she could) She did get an occupational therapist and we had loads of gadgets around the house- her favourite was her "grabber", like the litter picked thingies that she used all the time for things on the ground/ dropped items. We all learned the things to help her (don't leave the kettle empty, she can't hold it to refill) and we moved to a bungalow as stairs became more of an issue. Rope in as much helped you can and get an OT in too.

As a couple of people have mentioned live in carers, housekeepers etc, if you have a spare room could you consider taking in a lodger where the rent is reduced by a certain amount per week in return for a certain number of hours of housekeeping per week?

Sort of like the Shared Lives scheme for older people but different

I am sorry to hear this. My mum has ms.

Best thing a physio said to my mum was to make everything she could as easy as possible so that she could sav her energy for the Things she wanted to do. Up til then she had not wanted to accept extra help with the routine.

So if you are planning on staying where you are get the adaptations now. Stair lift/ rise and fall kitchen units ( see akw ltd or similar) grab rails. Walk in shower with seat. That way you use less energy just living and have a bit more energy for the things that make you feel good. Even if that is as simple as putting on make up and a nice piece of jewellery.

How about getting an echo dot with Alexa and connecting to smart plugs, door camera and your phone. That way you can get awkward lamp switches or see/talk to callers without having to make the trip to the door.

I have RA. I dont know if any of these ideas would help but here are a few things that help me..
I buy asdas scratch cook range of pre chopped veg and herbs for making soups and dinners these are in the freezer section. I buy chopped chicken also as i have problems with the feeling in my hands so cooking and chopping can be hard. Pre grated carrot and chopped veg from the fresh veg section also. When i cook i do a large amount and get dh to help with the stirring and pot lifting and then freeze individual portion sizes for when im not up to cooking. Clothing.. all my clothes are really stretchy non iron stuff that is easy to get on and off. I am office based for nhs so have to be quite smart. I have about 3 or 4 dresses i got from tkmaax that are easy to get on and off even if im really sore. I used to have a cleaner to do my heavier housework too which was a great help so if you could afford it then its worth a try.

I am so glad that you have been able to stay at work.

I have mobility issues due to chronic health condition.

I moved to single level accommodation as I could no longer manage stairs.

Mentally and physically this was the best move I made as I could access all areas of my home instead of being stuck up or down stairs!

I have a cleaner...this is a must and worth every penny! I wish I had one when I was working and she is amazing!.

I have a mobility scooter(not been out on it in 18months)

I have a wheelchair that friends push me in!
It took me a long time to get my head around getting in it!!
It's lightweight aluminium one and it folds up and wheels can be taken off so fits in most vehicles.

I have a new electric adjustable bed that I bought a few months ago and this has been an absolutely brilliant and the best £400 I have ever spent!
I wish I had bought one a good few years ago.

Being moved from a lying to sitting position is just brilliant and also raising the foot of the bed helps with putting socks on!!lol

I have a full size bath seat that I use in the shower. Grab rails in shower. I can no longer use a bath anyway.

I have an over the bed table which I use for eating my meals, accessing my laptop. It cost about £23 and is so easy to move!

I have set up my bedroom as my main living area as it is the shortest distance to the bathroom, it's warmer, I have to spend a lot of time laid down.

I have all my shopping delivered as I cannot get out the house.
Buy all stuff online usually Amazon.

I bought a second freezer so that I could have batch cooked meals for a couple of months ahead...my friends helps me with this.

I would definitely get the cleaner first then go for the electric adjustable bed

I am severely disabled and have gradually lost my mobility as my condition has progressed over the last eight years. I second asking your G.P for a referral to an occupational therapist, who can help you with fitting a stairlift, equipment to help you dress (eg to help lift your legs individually), wheelchair accessible doors, wetroom etc. I would also request a physiotherapist referral as you will gradually need a walking stick, crutches and then perhaps a powerchair. OT and Physio will work with you to help you be independent at every stage, but you will need regular reassessment. I would also ask your employer if they can organise an OT to visit your workplace to see how things can be made easier, for example, you may need a more accessible desk/ work area/ entrance/ bathroom as your condition progresses.

I would also consider whether your current home is adaptable for your future decline. Is there room to create a bathroom and bedroom downstairs? If you have critical illness cover you should be entitled to have your mortgage paid off. If your current home is not very accessible you may want to consider moving to a bungalow. OT can help you with this and they can advise the different requirements you may have as your condition progresses.

I want to send you so many hugs, it is so frightening and frustrating when your body betrays you and you lose your independence. You will be entitled to care, if you need support/ washing etc you can contact adult care department at your local social work department. They will not take your dc away, they are there to help support you including your role as a Mother.

Do contact your local M.S Society, they often have local treatment centres, where they offer alternative therapies like reflexology/ hyperbaric oxygen therapy and physio. Using these facilities will give you the opportunities to confide in other M.S sufferers. They should be able to help refer you for counselling, which you will need support with. I also advise that your husband/ partner reach out to your local carers organisation for support and help to adjust to a caring role. M.S is a bomb that basically blows your family and relationship up and you need to put it back together, when you do, it is not the same as it was before but can be stronger and just as loving with the right support.

Going through the process of arranging care with social services can be a minefield, my biggest tip is to look up your local advocacy organisation, there are wonderful advocates who will work with you, your dh/ partner and be at every meeting with ss to help you get the care package that you need. They can also help make sure you are getting everything that you are entitled to.

If you are on facebook, look up groups for people with M.S it can be so isolating and you see fear in your partner's eyes and don't want to burden them with your own fear. I held an awful lot in, but having a group online that was full of people in my situation going through or with experience of going through what I was so helpful. Only someone who has already tread your path can understand the depth of your worries and fears. Let yourself feel what you are feeling, write it down in a diary or on a piece of paper and burn it, rip it up if you need to. Punch pillows or scream into a pillow, let your rage and the unfairness of it all out, or you will end up snapping at your dp or kids. If you find yourself slipping into a dark place or overly anxious, don't ignore it, contact your g.p as anti-depressants and anti-anxiety meds can make such a difference! Try to think of your aids as things that help you to do things, rather than things that you have to use because you can't do something. Every new aid can bring you further down, or you can accept it and use it to remain as independant as possible.

I advise that your dh and yourself if you can both have a counsellor or someone to confide in, caring for your loved one can change the dynamic of your relationship. If you can have an outlet to your frustration outside of your relationship then you can try to face each new turn with humour. Don't let your dh/p take on too much of your care, you are entitled to care, so take it, it makes such a difference having someone else care for you, allowing you to try to hold onto being lovers instead of carer and cared for. My dh still cares for me outside of the hours my carers are here, but he is not under as much pressure. We have a great intimacy between us (he had to give up work to care for me and our two dc) more so since I have had carers who take care of my washing/ showering/ dressing/ toileting needs.