Me and Dizzy have been thinking about the financial impact of living with a chronic illness such as MS, especially in the last year since being self employed. We’ve also heard many other people’s stories and difficulties when it comes to trying to balance chronic illness and finances.
Almost 2.5 million people worldwide have to deal with these problems on a daily basis. So, we thought we would make a little post on this, also in the hopes of highlighting some of the other aspects of living with chronic illness, not just the physical. Dizzy has helped but I told her she can’t put down the biggest aspect being, ‘Might not be able to buy an unlimited supply of ginger nut biscuits!’… 🙂
Debt
The average person in the UK owes around £8,000 (this figure being even higher with mortgages expenses). According to a study, people with MS can also have problems managing money (I wish Dizzy would sort all our financial things out for me, especially the tax returns! :)) as well as the extra expenses associated with the disease.
There can also be knock-on effects of this. When someone doesn’t have the money to cover their outgoings and debts, they can turn to payday loans as a solution, and this can mean even more problems and debt.
Extra Care
Many people can need extra care at some points during their lives, especially with conditions such as MS. Some people need help pottering around the house, getting ready in the morning or help with activities, such as shopping. The only option can sometimes be to pay for the additional care. There are benefits which cover some of the costs, but me and Dizzy know many people who have to pay lots of money for these services. For example, if a person with MS needs a nurse to help out two to three times a week, then they may have to contribute.
Then there is also all the householdy type things aswell, such as cleaning, which people may need help with. Dizzy doesn’t seem keen to volunteer for those kind of tasks very often. 🙂
Daily Activities
People with MS can also have difficulties with daily activities, and things can sometimes take alot longer to do too! This can be anything from popping to the shops (supermarkets are impossible for me and Dizzy when we have the dizzies) to using an ATM. It can also be really frustrating if for some things, we have to get other people to help.
Fraud
Online shopping is one of the main ways of shopping today. Me and Dizzy use it all the time, as it’s quick and easy (and means no supermarkets!). 🙂 But using the internet can also lead to fraud. There are all the challenges of making sure a website is safe, and with fatigued this can sometimes be even harder. Me and Dizzy make sure to only use main sites that we know. 🙂
Employment
We all know that discrimination based on a disability is illegal, but unfortunately, as me and Dizzy found out, it does still happen in the workplace. With this, and the physical pressure of working it can lead people to resign, or become a self-employed Dizzy! 🙂 There’s also the juggling of appointments… Even though we left our job because of people’s attitudes, looking back it was also having a massive impact on our health and the tiredness element of it. Me and Dizzy were either at work or asleep!
Have you noticed a difference with finance if you’ve been diagnosed with a chronic illness, and have you found any good tips for helping? 🙂 xxx
Good post. I too had to leave my job this year, for reasons which I can’t go into, and it’s ‘s hard. When I started working, from full time salary to part time, you realise you really don’t need another handbag or pair of boots!. I just make do with what I have. Budgeting, being a little frugal, and making the best of what you already have. It’s frustrating at times and I’m finding it harder now not bringing in a salary at all. I Need to work and finding it difficult to find a part time role suitable. And because my partner works we don’t get any financial support whilst I’m looking for work. We still enjoy days without spending money, or not a lot of money. :).
It’s true, and it makes you realise that there are lots of days out and things to do without spending much, if any money. 🙂 I so hope you are able to find a part time job soon that’s suitable. What sort of work do you do? I am finding it’s just about ok on the hours I do now, but times, such as the Summer have been a struggle as I’m in the education system, so there’s not much self employed work around during the holidays. But I also still had nice days out. I’m happiest just pottering to the park and feeding the ducks, so not much expense there. 🙂 xxx
Great post, Hannah. <3 ~ Cobs. xxx
Thanks Cobs! 🙂 And Dizzy’s been chuckling, but it’s Heather. We’re noticed that every other comment it’s Hannah and then Heather. 🙂 Not that I mind Hannah, it’s a rather nice name. 🙂 Sending donkey hugs. 🙂 xxx
I retired from teaching children organic horticulture and felt very sad but it was unsustainable healthwise. Although my budget us much reduced I feel better in myself these days. I also appreciate new things much more when I have to save for them. xx 🌼
I am the same Brigid. And no amount of money is worth sacrificing your health for. I am feel much better in myself, and really feel like myself again. 🙂 I felt so ill and tired at the end of last year. x Hope you’ve had a lovely day. It’s nice and sunny here and I went for a walk in some gardens, made me think of your post 🙂 xxx
Thanka for your blog – inspiring and helpful as always.
I wish the local supermarkets/etc had online shopping and home delivery here, but alas it is not so – one of the joys of living in a rural Australian town. Just dropping into the shops to pick up some daily bits and pieces – something I had to never think about before MS – now feels like executing a large planned battle strategy, to get me out the door and back. That’s frustrating for me, asa huge part of my psyche is very ‘spontaneous’… so, having to plan things in advance can often feel to suck the joy out of it for me. It’s funny little things like this I’ve found, on my MS journey!
But I can’t complain (I’m not, really – more of an observation, really) – my #MS is not as active nor debilitating as a lot of other peoples, but I can wholly empathise with them in their situation.
I like what you said about the financial side. While I’m not on any meds for my MS, I am for my other nealth stuff. here in Australia, the Govt subsidizes a lot for a lot of our pescriptions, and thankfully, all of mine are covered. i honestly do not how I would financially cope without the “PBS” here – as I’m really unemployable.
Woah – you got me monologuing [laffs]. Thanks for your blog.
Mal (Lancelots Pram), Australia 🙂
It’s so true how different things are with MS. When going through a relapse, even getting something at the corner shop (and when parking outside) can be nearly impossible. It’s the things we use to do without even thinking about them! Luckily getting to the shop and round it is fine at the moment, but does really make me appreciate being able to do it.
I’m lucky here too, as in the UK we have the NHS, which pays for the medication. There’s no prescriptions for DMD’s here, they just drop the drugs off. But I would hate to have to have that extra worry.
And we loved reading your monologuing comment, so thank you. 🙂 xxx
Had to retire from my career as a network engineer due to MS forcing me to use a wheelchair. Most compant’s wiring cabinets are NOT handicap accessible. I!t was my dream job! Took a sharp mind to control data flow for a business. Got to tell data both where to go and how to get there! I miss it severely.
So I turned to my childhood love of writing. Haven’t mad profit from it yet. But haven’t been at it that long yet!
I am sorry that you had to retire from your dream job. That must have been so hard. xx But I’m glad you are now using your time to write, and go back to your childhood passion. 🙂 I think all these things take time to make any profit from, but I’m sure you will in the near future. 🙂 xxx
We moved to another country but I beieve I would’ve had to leave my job if I had stayed. The loopiness got to be too much at the end. Other aspects of life are luckily still okay so that I do not have extra expenses. As far as helpful tips- I have learned to be more frugal which helps save money. As always… thank you for your wonderful post! It is both informative and inspirational! 🤗
I’m the same as you, luckily I don’t have extra expenses either. I do often have to do my shopping online, but alot of the time places offer free delivery, or I get my food shopping delivered in the cheap delivery slots (£1 🙂 ). Thank you for your lovely comment on our post aswell, it really mean alots to me and Dizzy. 🙂 xxx
Brilliant post. I love the way dizzys blog posts are so informative yet visually engaging as well xxxx
Thank you Sid! 🙂 xxxx
It is bad enough to worry about your health, but to worry about finances as well is such a drain on anyone … I feel for you . I got laid off and my mom had medical issues back in 2009, so I’ve not worked full time since April of 2009. I have learned to make little things count as big things and just be frugal. It’s not for everyone though and sometimes I’ve had regrets for sticking it out and not getting a regular, full-time job again.
I think making little things count, makes a big difference, and can make us appreciate things in life more. 🙂 It does make a difference financially not working full time, but I think many other things can be gained from it, and I’m sure your mum has appreciated you being around more. 🙂 xxx
I understand exactly what you mean. Most of my pay ends up going on medical appointments, medications, things like gloves and icepacks etc. It’s so unfair. There definitely is a financial burden. I have been terminated more than once from positions because of my conditions and had to give up on many of my dreams because my body eventually gave up. I dream of a day I can one day be self employed too and do what I love for a job or that people are more accepting and inclusive of people living with disability and chronic illness.
It’s so unfair, because you can’t work as much with illnesses and they also lead to more expenses. 🙁 I’m so sorry you’ve lost jobs because of it aswell. I too hope that one day people will be more accepting. x What would you like to do if you were self employed? 🙂 xxx
Just nominated you for Blogger Recognition Award btw. 🙂 Link is below
coolncreative.wordpress.com/2018/09/05/blogger-recognition-award/
And thank you so much for the nomination. 🙂 xxx
I had to change jobs, meaning even though I still work full time, I earn less than half of what I did pre-diagnosis. Working conditions are better, very flexible and understanding colleagues, and I try and remember this!
That must have been hard though, that’s a big reduction in pay for the same hours. xx But having flexibility and understanding colleagues does make such a difference. I’m glad you’re in a work place where they are supportive. 🙂 xxx
You are right about costs. They go beyond medical. Like several of us, my profession career ended at the hands of MS. That in itself costs a huge amount. Instead of painting our housers or washing our cars ourselves, the expenses mount. It goes on and on. Good post!
I’m sorry to hear that your professional career ended because of MS, it does with so many. 🙁 Luckily I am still able to work, but only part time. But I remind myself that I am able to do other things (such as blogging), that I wouldn’t have time to do if I did work full time, when trying to remember the positives. 🙂 x Thank you for stopping by George. 🙂 xxx
Great post Heather! Things have been terribly hard for me so far this year with being able to afford all that comes along with MS. I am also not working full-time right now and my husband hasn’t worked since October. His issues are just depression and I have NO idea what else. It is amazing what we can do when we do not have a choice. You and Dizzy always make me smile and I just love y’all!
I’m sorry this year has been so hard, finance is a worry we really don’t need on top of having MS. But at the same time, I am glad you’re not working full time as it will be doing your body good, and giving you more time to rest. xx But trying to juggle both health and finance is very difficult. I so hope it gets easier soon. Are you still keeping an eye out for a new job? xxx
Thank you Heather! It is good for my health working part-time like hours, but it is horrible for finances. I am looking for a job in the city we are in the process of moving to. I am trying to focus on work from home jobs because I think that would be A LOT better for me. The whole thing with of getting ready and going around those with a lot of ignorance is hard! I would love to work from home!!!! xxx
It would be alot better for you. I’m sure the right working at home job will turn up. 🙂 Just keep looking. 🙂 Sending lots of hugs. xxx
Thank you Heather! I have a secret to share! I had a phone interview today with Habitat for Humanity! It isn’t working from home, but the hours are great and they stand for something I agree with. I have a face-to-face interview on Wednesday, so I will not be going to my normal job!!! Hugsxx!
That’s amazing news Alyssa. I shall be thinking of you on Wednesday, I know they’ll love you though!! 🙂 Dizzy sends lots of luck too. 🙂 xxx
Thank you Heather! I am excited and nervous, but all I can do is go in and just be me. I hope they like me! With the wishes of luck from you and Dizzy, it should be a walk in the park! xxx
They can’t not like you! Let us know how it goes tomorrow. 🙂 xxx
Thank you Heather! I really hope you are right. Goodness I wish you and Dizzy could do the interview!! I will keep you posted!
Hehe, I don’t know what their reaction would be to Dizzy sitting there looking at them! 🙂 When I have interviews I make Dizzy stay in my bag, I don’t trust her to not start nibbling on things… 🙂 And Good Luck!!! 🙂 xxx
Maybe if I had Dizzy they would be so confused, they would just say “Please take the job!” At least you have Dizzy in your bag for support! I really hope they hire me because I do believe this is the right organization and job for me and my beliefs! My interview is Wednesday at 2pm my time, I do not know what that would be your time. xxx
Hehe, I’m not sure getting the job by confusing them with knitted donkeys is the way to go. 🙂 But Dizzy assures me, that she is very good at this sort of thing. 🙂 It will be evening time here, depending on where you are, sometime between 7ish and 9ish I think. Me and Dizzy will be thinking of you all evening so we’ll be thinking of you when you’re there. 🙂 Lots of positive thinking, you can so do this!! xxx
I am so glad to have you and Dizzy in my corner! I am in North Carolina. So you would be 5-7 hours ahead of me? What time is it where you are now? It is 5:23pm here.
It was 10.23 when you sent that message. And I checked on google, 🙂 we’re exactly 5 hours ahead. So me and Dizzy shall be thinking of you, and sending lots of positive vibes at 7 our time. 🙂 xxx
I hate responding to you at this hour because you are probably asleep. It is 8:12 here, so it must be 1:12 am where you live. I promise to let you and Dizzy know how the interview goes tomorrow! I really HOPE I get it!! xxx
That’s ok. I was fast asleep, but was lovely to wake up to a message from you. How has the interview gone? By our timing it should have just finished/be nearly finished. xxx
I am really late because we stopped after the interview for dinner. I am so happy to say, I was offered the job!!!!! She called me an hour after I left to offer me the job! I guess you will wake up to this message. I am SO excited! Thank you and Dizzy for all your support!!! LOTS of LOVE to both of you!!
Yayyyyyyyyyy! I was so happy to see your message. I knew you could do it!! xxx
Thank you SO much! I am speaking with her via phone in 30 minutes because I have a few questions and want to negotiate with pay!!! Hopefully that will work out the way I want it to, but I am accepting the job regardless, she doesn’t need to know that though!
How did you got on with your phone call too her? Were you able to negotiate the pay? Still so happy that you have got the job! 🙂 xxx
I was able to negotiate the pay. I told her that I was not wanting to be below a certain amount because my bills were not going to decrease. I am so thrilled this all worked out so well. I am so far beyond excited to be giving my notice to my current job tomorrow morning. I already have my letter typed and ready!!! I swear they sounded more excited than I did when I accepted. That means so much to me!! xxx
So happy for you!! 🙂 Do you know when you will be starting? 🙂 xxx
Thank you! I gave my notice today, so my last day at my current job is next Friday and I start the new job on September 28th!!!!!
That’s really nice and quick! 🙂 So exciting. 🙂 xxx
I am really excited and nervous! Starting a new job in a new city that I don’t know my way around is nerve-wrecking! I am going to need to learn my way around and use GPS!!! Thank you and Dizzy for all your support!!! xxx
My MS also made me make the decision to walk away from a beloved teaching position. I too was either working or sleeping. My husband absorbed the loss of my income and I focus on my family and my health now. It’s a big loss of income (and health care contribution from the school district) but I can tell you from my Cognition Assessment that while I’m struggling with stress currently I am overall better in my brain functioning without the loved but enormous teaching position!! I’m lucky that my husband can offer this support for me. I have a friend who also has MS and is now battling stage 4 cancer while keeping her position as school psychologist.
It’s so difficult, I do miss teaching but we do have to put our health first. I’ve been much better since giving it up. 🙂 I do hope your friend is ok, MS alone is enough to deal with! x Sending lots of hugs. xxx