My MS Life – 20 Things that Make it Easier

MS life is never easy.  I have been living with my Multiple Sclerosis for 30 years now and it is only recently that I have started to identify the things that help me live more easily.  It’s only when I leave my own house and go to someone else’s or out somewhere in public that I realise just how much I rely on everyday objects and routines to feel as safe and well as I can be.  And I’m so aware that I am fortunate to be able to use many of these as I know that not everyone can; living with a chronic illness is expensive – prescriptions, increased household bills, aids to help, the impact that a reduced income can have…

The main symptoms of my MS are mobility difficulties, weak hands and fingers and fatigue. These are the things that help me – is it the same for you?

10 Things I Use to Make My MS Life Easier

1) Voice Dictation

When I was at work in the NHS, one of the reasonable adjustments that they made for me was to purchase some Dragon software. This allowed me to dictate my reports and notes as opposed to fatigue my hands and fingers. It was brilliant – you could program your voice into it so that my hybrid Canadian/ Scottish/English voice could be easily understood. Unfortunately, Dragon software does not offer a dictation package for Mac users but I have successfully used the inbuilt voice dictation on both my phone and laptop. It may not get it perfectly accurate all the time, but dictating is a heck of a lot easier than using my butterfingers sometimes.

2) Notes App

Where would I be without my notes app? This comes as standard on my iPhone/ MacBook that a quick Google search shows that the equivalent is normally available on Android devices. OneNote apparently works across Windows, Mac, iOS and Android devices. I use my notes app for shopping lists, keeping blog post ideas, writing down information that others may have given me about a great book to read or film to watch. Not only does a help to have all of that in one place but it’s very good for my MS-brain that doesn’t always remember things as easily as I want it to.

3) Everyday Objects as Aids

Sometimes, I have to remind myself that as well as using mobility aids that are made for a specific purpose (see below) I also use everyday objects as aids for my progressive multiple sclerosis. When I have to complete my PIP application I realise that the radiator next to my toilet acts as a brilliant grab rail and that I rely on the shelf under my window to help me get in and out of the bath more safely. Don’t underestimate how important a kitchen chair or simple wall is to a person with multiple sclerosis! I also didn’t realise how useful an electric tin opener was until I got one.

4) Disability Aids

A leg up, rollator, mobility scooter, wheelchair, shower bench, double bannister, grab rails outside the front door… all help me to live more easily as a person with mobility difficulties. With them all written down, it makes me realise why staying at others’ houses overnight can be particularly challenging for me

5) Pressure Cooker

You know that feeling that you can get when you know you have to make some food but you just can’t be motivated to get off the sofa? Or fatigue is so strong that you’re tempted just to order a takeaway? My pressure cooker helps me to make food quickly, but it can also act as a slow cooker if needed. I bulk cook dried beans so I have a cheap, healthy meat alternative available when I need it.

6) Alexa

Alexa means that I can now announce when tea is ready instead of shouting up the stairs to the kids or dragging my MS legs up to them. Our house is quieter too, which is great for my stress levels and mental health!

7) Online Shopping

Mobility difficulties and affected by bright lights and busy places? I often shop online for groceries and gifts as it is simply easier. And linked to that are…

8) …Amazon subscriptions

As much as I would prefer to shop local, I a) can’t often get to the shops easily b) cat food is too heavy for me to carry c) subscriptions are often cheaper and d) I often realise we need something only once it has run out. Subscriptions take that worry away.

9) Audible

I discovered Audible properly last year; when sometimes your hands are too weak to even hold a kindle or paperback, audiobooks are there to fill the gap. Plus I can listen whilst doing the washing up or lying with my eyes closed on the sofa.

10) The Children!

I don’t want to call my kids an ‘item’, but they are definitely everyday things that help my MS. Whereas caring for young children when you have MS it’s definitely a challenge, mine are a wee bit older now (11 and 14) and I can ask them to help me do the jobs I struggle with. My daughter now makes a lovely salad and helps me when shopping, my son takes the bins in out every week and sweeps the floor for me. They even make me a lovely cup of tea every now and then.

10 Routines I Have That Make my MS Life Easier

1) Cooking in Bulk

So I always have a healthy meal that takes minimal prep time – especially useful when the kids are at their dad’s for the night

2) Always Get One Extra

I try and buy more than one of the things I use most regularly so I don’t suddenly run out – hand wash, toothpaste, parcel tape. Boring but it reduces my stress levels to know I am prepared

3) Using ‘Easy’ Recipes

In general, ‘easy’ recipes tend to be short and use fewer ‘spoons’ than others. For that reason, I like Jamie Oliver’s 5 Ingredients, particularly for the kids’ meals (they eat meat and dairy, I don’t) and I have this Deliciously Ella meal regularly as it is so simple. An alternative to an ‘easy recipe’? A shop-bought pre-made meal.

4) Bags for Gifts

Quicker and easier on my MS fingers than paper and tape when having to give a gift, I tend to reuse ones we have received. When I sewed more regularly I even sometimes made my own.

5) ‘Do Nothing’ Days

Since starting my self-employed work, I have set myself one day a week that is a non-negotiable ‘do nothing’ day whilst the kids are at school. To me, that is a day when I don’t go out, can sit on the sofa all day if I want to and just generally recharge. If you read my previous blog post about finding balance, you’ll know that I am trying to factor more time outside of work to focus on myself and my health needs, so I am thinking that a second ‘do nothing’ day might be the answer.

6) Asking for Help

Not a routine as such, but something that I routinely do – when I first started having my MS symptoms, I used to feel embarrassed or that I’d be putting people out if I asked for help. I’ve since realised that need must.

“People who mind don’t matter and people who matter don’t mind”

7) Tidying

A pretty boring routine to have but I truly believe that, for me, it’s a case of, “tidy house, tidy mind”. It means I don’t lose stuff half as often as I used to and that when the kids ask, “Mum, where’s my…” I usually have an answer! It saves a lot of potential stress.

8) Prioritising Mental Health

I’ve worked out that I need to do at least one of these a day: meditation and/or yoga and/or journaling. Ideally all three. If I don’t, I turn into stress-head Jen. And no one wants to see that. Plus, according to research, substantial evidence indicates that stress can precipitate or worsen symptoms of inflammation in general and more specifically in multiple sclerosis.

9) Morning Habits

I seem to have got myself into a bit of a moring routine that looks something like: do a child’s pose yoga stretch in bed, take my morning meds, go downstairs, feed the cats, make the kids’ sandwiches for lunch, put coffee into brew, wave the kids off to school (luckily they can mainly sort themselves out now) then, finally, sit down and relaxxxx with my coffee. All whilst listening to BBC Radio 2. I am officially getting old. Or turning into my parents.

10) A Relaxing Bedtime

Like my morning routine sorts me out for the day ahead (even if it is one of my ‘do nothing’ days), I find having a rough evening routine tends to lead to a better nights’ sleep. Which is pretty essential since my painful leg spasticity means I am often woken in the night. A hot drink, a bit of stretching, diffusing some lavender oil and reading before I sleep seems to help. Magnesium, either in tablet or oil spray, is also a necessity, as it helps my stiff muscles.

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These are the items and routines that seem to help me live my MS life a little bit more easily… but I am aware that it might not be the same for everyone. Is there something that you rely on to lessen the impact and/or stress of your illness? I would love to hear.

Till next time