to ask for tips about living alone with chronic illnesses

[lailamaria]

I'm not a parent but i'm going to uni next year and i wondered if anyone could give me some tips.

I have 4 chronic illnesses that will only get worse as I get older and currently even though I know it's wrong my mum has to do quite a few things for me (i help where i can obviously i hate her having to do anything it makes me feel so guilty.)

Currently she has to do things like clean my bedroom floor for me every six months or so, i clean everywhere else it's just so i don't have to bend. I use a mop to clean the bath out but i also can't do the washing up because standing for a while makes me dizzy (i'm thinking i could buy a stool to do it on my own)

I know there's a lot more my poor mum has to do for me but I have shit memory due to again my chronic illness and adhd so i'll probably have to write checklists everyday as well lol.

I know there's a lot of things I will just have to push through but I don't want to be passing out from dizziness everyday so i was hoping more people would have tips

Just for the record my mum is amazing in every way and has never once made me feel guilty or blamed me sorry for the long post

You need to make a list of exactly what you need help with in day to day life. Everything that your mum currently does for you. Then address each issue and workout whether there is a solution, like the stool for washing up.

If we don't know what you need help with then we can't advise you!

Have you had an occupational therapy assessment? They could help with equipment such as a perching stool if you can't stand for long.

I cant help you on what you have asked in terms of the practicalities but I have epilepsy which has fucked my short term memory, here are some tips to remember:

• Lists on pieces of paper but I have a mini whiteboard - I have it at work and use to at Uni, I write a to-do list at the start of the day, I can tick them off and change it if my day changes, plus its permantly on show in big writing on my desk. Then wipe it off at the end of the day and I dont lose it!


• A pin board is another option for home, for sticking important / current pieces of paper (letters, uni assignments etc) up on your wall. That way you are not wafting through various documents.


• Post-it notes are always useful.


• I have a physical diary which means I can add extra notes if needed about my day, and by writing it down helps me remember more.


• I also put all my appts in my phone / computer.

Definitely get an occupational therapy referral. They will
Be able to come up with all sorts of suggestions and gadgets that might help.

Can you get Pip so you can pay for a cleaner/carer type person to help out a few times a week?

Regarding fatigue, it's helpful to list those tasks that you find the most taxing - even if is 'standing at the kitchen counter chopping vegetables for dinner', for example - and pace them throughout the day rather than have them in larger chunks in the morning or evening. So instead, you could tidy up in the morning for half and hour when you have some spark, or chop your vegies for dinner then and pop in the fridge for later. This way, you're not expending your energy early in the day and descending into fatigue, but controlling how your body responds to activity.

Is that the kind of tip you were after?

I have several chronic conditions that are progressive too. I wasn't diagnosed until my 30s though.

With Uni - are you able to get a disabled room in halls? Halls always provide cleaners and the room itself will help you with adaptations. What help have they offered so far in terms of setting up equipment for you? I believe you can get extra financial assistance for a laptop.

My biggest issue is fatigue and being able to prioritise my energy. Have simple meals and snacks handy so that you can eat when you need to without moving. You may not be allowed to keep food in your room in halls, but so long as you're not setting up a camping kitchen you will be fine with pot noodles and a kettle tucked away.

Get assessed and ask for help whenever you need it. People assume you're fine and don't see the struggle, help won't be offered. You have to ask.

Best of luck

@SandysMam we've tried, my chronic illnesses are severe but also don't even meet the criteria which makes things significantly harder which is annoying for both of us

@Flederjo She does the washing up, i sit and do the drying at the kitchen table, she loads the dishwasher and i unload it, she sweeps and mops although i could do that myself come to think of it - something to talk about with her. I feed the animals but as i said she has to clean my bedroom floor for me and before we came up with the mop idea she was cleaning the bath out for me. i'm sure there's many more obviously but this is off the top of my head

@jessieminto This is the kind of reply I wanted, i didn't even know disabled rooms existed i'm the first to go to uni away from home and it's kind of been the blind leading the blind. Yeah fatigue is lethal and my condition is only going to deteriorate as i get older, i currently need a wheelchair part time but i can and do walk on good days.

Weirdly enough i have a crap appetite which probably doesn't help so i think having a tub of snacks like cereal bars and sugary drinks to keep my sugar from dropping will be great.

the University will more likely have an access/inclusion officer so it would be worth making contact with them to see what they can offer in terms if support

Also i want to clarify i do work, i work a desk job and pay 100 pounds a week to my mum and own my own car but i don't pay for my own phone and my dad pays towards my petrol so i sometimes wonder if i'm taking the mick or not (dad isn't really in the picture just me and my mum living at home)

What is stopping you doing the loading? I'm wondering if maybe you are able to do it if say you load it in the morning then unload it at the end of the day or if its physically impossible for you to do it. Some dishwashers have a half load option that mean you can use the top rack only if that is at all helpful to you? I use it when I have hurt my back.

And yes to an accessible room at uni. Contact them they'll be super helpful. Also you may be able to get extensions or equipment that might help with uni. Can you cook for yourself? I found cooking 2 portions and keeping one for the next day or freezing it super helpful. And tins, if you struggle with tins there are electric tin openers. And if it comes to it and you're just unable to cook that day or get out the house then deliveroo or similar is helpful for one offs.

@WooNoodle We actually have an electronic jar and can opener plus i own a food processor that i got for christmas (i'm very into cooking not so much the chopping) i like making big batches of soup and freezing them because i'm autistic and have sensory issues so soup just makes it easier for me to have the things my body needs without the texture.

I have extensions for college when it comes to essays or exams but again this uni thing is new so i didn't know what the protocol was for additional needs i thought they just left you to get on with it tbh

If you haven't done so already, apply for disabled students allowance. (DSA) THis will pay for equipment that you need. You may get things like a note taker too.

You need to contact the student support team at the uni and discuss your needs with them. There may be multiple adjustments they can help you with.

Have you had support with applying for PIP? You certainly sound as if you should qualify if the application is correctly worded.

They do to a certain extent but there is support available please do get in touch with the uni to find out what they can offer.

That doesn’t really make sense, if your mum is having to help you with tasks and personal care then you should meet the criteria.

without wanting to pry, the kinds of illness you have might be useful to help advise you ok tips as different thinks need different adjustments.

Yes definitely go into halls.

There will be cleaners, catered options etc which will take the pressure off you. There's also live in "Resident Advisors" (I worked as one when I was a postgrad student) available 24 hours a day if you did have a problem.

There's also normally a Warden or equivalent and whole team of staff (generally academics at the uni) who run the halls and can support you. So for example, while I worked there we were aware of several students with disabilities like diabetes, schizohprenia, mobility issues etc who we checked in with each week.

Contact your disability services ASAP - you will be suprised at the amount of support they'll offer you. I have a really minor health condition and went for an assesment purely because I wanted an extension on an assignment, and I came with all sorts of funding for equipment and tips to make my life easier.

i didn't know what the protocol was for additional needs i thought they just left you to get on with it tbh

No not at all @lailamaria !

There is SO much funding and support for all kinds of disabilities.

This includes things like autism and other sensory conditions, alongside your chronic illnesses.