When you have a chronic illness, or two, or five it can get expensive and more often than not the more disabling it is the more likely it is it will impact your capacity to make an income or your income stability.
It is like trying to balance an impossible equation
It is the ultimate contradiction really. We are really devalued by society. Even the lowest income society thinks people should be able to live on… we are expected to live on less if we are disabled. Unfortunately, being disabled itself comes with extra expenses a healthy person just doesn’t have.
And so we either cannot afford the things we need to manage our chronic illnesses. And go without. Or we try to budget and see what else we can go without.
For those of us with chronic illnesses that have gone from full-time work, to part-time work, to disability… we have struggled to budget for a long time as our income dwindled to next to nothing but we still had the same debt load… and that is damn hard to figure out. What can you sell? What bills can you reduce? What services can you just do without to get rid of a bill? And do not buy anything new. You may need it but, yeah, no. How long can you make things actually last. Quite a while actually. I can tell you that.
It is like when I think about the last time I bought shoes. I actually do not remember. But I think my shoes are at least a decade old. I don’t need another pair because this pair is still intact. However, due to flexible flat feet, knee pain, hip pain and so on and so forth, I did need to by cheap insoles. Sure, specific shoes to really manage that issue might be Practical but that would be More Expensive. So cheap insoles in my perfectly intact shoes is a fine compromise to me.
Not being materialistic isn’t a hardship. I like buying used clothes when I need clothes, for example. I think it is a good habit really. I have low needs when it comes to such things. Mostly, I like books. A lot. But there are a lot of free books available these days.
Some of my expenses
Many of us can need a mobility aid all of the time, or some of the time. For me, that is my cane for my vestibular issues. Some of the time when it is severe. I am trying not to as I do my vestibular rehabilitation, of course, but when it is severe or I am out and about… it does come in handy just in case. Anyway, that is out of pocket. Many people have far more expensive mobility aid needs.
There are a Whole lot in this category we Could take but, man, that becomes costly. Unfortunately, there ends up being some we Have to take.
I have to take calcium due to some bone loss issues as per my doctor. I have to take magnesium since it goes with that but also for chronic migraines and fibromylgia. And I have to take vitamin D (5000 iu) because it also goes with those and my doctor put me on that one.
I have to take one for arthritis. I have a mixed one for that. I have to because I can’t take NSAIDs. I had a bleeding ulcer from those meds and since then developed a permanent intolerance. Unfortunately, due to double-joints and genetics also likely to get arthritis and it seems that is something I have now in my hands and that supplement is the only thing that dampens that pain in the winter/spring/fall for me. And that pain is Not cool when you tend to Use your Hands. I Could take Omegas for the same reason, in addition.
I Should take a good B-complex for migraines. Minimally. With the magnesium. There are others I Could take. Some people have good results from a good vitamin/supplement regiment with migraines. And maybe if I only had migraine disease I might be able to give that ago. But not at this time.
I Should take a good hormonal supplement for peri-menopausal symptoms since I will never be able to take estrogen therapy with migraine with aura and any complications to my sleep (night sweats and so forth) make my RLS insane. I have surprisingly severe Restless Leg Syndrome.
Now, could, should, would… and Can’t afford any. To be honest, my mom really, really helps me out with most of these. And if she didn’t I wouldn’t be on them. It is just not in my budget regardless of the fact I am supposed to be on these minimally. This isn’t even counting all the could be on ones that definitely could be beneficial. Ones definitely recommended for migraines, for example.
Well, this is something that is partly covered by my issuance. So I have physiotherapy I have to go to and have no choice in that fact. My insurance will pay for a fraction of that. And I will go up until they no longer pay.
But every other thing in this category I may want to do, like see a psychologist, or anything is Also either under the same insurance category so I am going to totally burn through it with physio and therefore can’t do anything else. Or is so little it is meaningless like for psychology… ‘Yeah, I can see you for therapy, like, maybe 5 times… so you better talk Fast.’
So I rarely do anything here. This is not something I can afford. I do things I can do for free. Walking. Meditation. Stretching exercises. Things like that.
Obviously, I could do with special footwear but like I explained above I am just not going there. I do use shoe insoles that give me an arch which helps a little with the pain caused by flexible flat feet.
I do get glasses with a migraine filter on them and those are not cheap. Even the cheapest I have found was not cheap. But Insanely beneficial so I really have forked out for these because I really need them to function.
Due to my whole hand arthritis issue when I do not have supplements I use a hand brace to just use my hand in any way. And sometimes knee braces.
Devices and added Stuff
- Heating pads.
- Heating blankets.
- A thing to help open jars. That is super handy.
- Numerous cold packs.
- Magnesium cream and spray
- Epsom salts
- Air purifier
I have on this blog tried and used other devices that have helped me so very much. Like my Avulux migraine glasses. These are things that are an investment but that I use so often that I just find extremely valuable in my management. Some of which I got for Christmas presents.
- Allay lamp: green light migraine therapy
- Ice Kap: for migraine ice therapy
- Weather X ear plugs: for weather trigger migraines
Oh the out of pocket medications! Yay
- Anti-nausea meds for when I can’t afford my anti-nausea med prescription
- Tylenol ( as I can’t use NSAIDs or aspirin)
- 10 thousand pain creams
I’m liking forgetting some of these since I tend to not buy some for cost reasons.
The cost of parking at hospitals. At rehabilitation hospitals. At specialist appointments. This really can add up. Again, my mom usually picks this up. Definitely since I have been unable to drive.
Faxing/filling out insurance disability forms by doctors
This is an insane cost that literally never ends. And every year it goes up it seems. I remember when it was 25 bucks. Now it can be 75-125 bucks to fill out a 1 page freaking form. That I MOSTLY fill out MYSELF.
Sensitive skin products/ environmentally friendly cleaners
I have extremely sensitive skin which means I have to buy very specific products. There are now more on the market than there Used to be, thankfully.
- No sulfates shampoo, soap, laundry detergent… hell, anything and everything. I use lotions a lot of my sensitive skin issues. The one I use at the moment basically has like 2 ingredients and is mostly coconut cream. It is really quite nice. And I do not react to that. So… good. Basically, if it has no scent, so no fragrance, and no sulfates, it is good to go. I have issues with this.
- Nothing with any ragweed’s in it… so no chamomile, for example.
- Deodorant, not antiperspirant.
- Cleaners with no aggressive scents added. Usually the ones that are environmentally friendly are made with some good ingredients that are not insanely aggressive. But you know vinegar and baking soda work for a lot of things anyway.
- Laundry detergents can’t have extra scents or softeners added. If it has a Nice Scent after it is not clean… it is SCENTED. And rubbing fragrance all over myself is basically going to cause a massive issue.
- I have to have an air filter. And of course buy filters for it. I should get my ducts cleaned regularly but I just do not have the budget for it.
That list is likely longer as well. I have been reacting to a lot lately so this is getting longer for some reason. I suppose make-up would be on this list but I don’t wear it, for that reason, and never learned to, for that reason.
In the end
So those are the things that I consider. I know I am forgetting some things. There are always so many small things to consider all the time that take a bit out of the budget, bit by little bit. You just do not think about them because they help your life slightly. And every teeny tiny bit helps. So that is important.
And each and every one of us has a list. Some way longer than mine. Some have a smaller but more expensive list. I mean, we have have different needs. But it all costs money. And many of us have different financial situations and complications. But I do know often in our lives with disability our financial situation is volatile.
I do know there are some assistance programs and they do assist with some things but not with others. I am on AISH now- and I find their drug plan is extremely picky. If I had to depend on it only, I would really, really have to change my medications. That should give an idea of how difficult it is to get assistance for your actual needs from those programs. If I really, really need a medication they really do not want to cover, I have to get a form from them, bring it to my doctor, get her to fill it out, which she will charge me for, give it to them to get them to process and see if they will then approve it or not. Even though they insist you should try to get any need you have covered. Doesn’t mean it will be. Basically, when it comes to those things we have to expend a lot of effort to fill out paperwork and find the programs just to get the basics needs filled because we can’t afford those basic needs. Because we do not make a basic living income. It is a very intensive paper process that essentially says, we don’t really value you as a person but if you try really hard we may or may not help you with some really basic things to help you function. Maybe.
I don’t like the system but I can’t change it. Aside from voting and advocating for change- and respect and dignity for disabled people. Until they, we have to make due with the financial instability. I completely understand why chronically ill people push themselves to continue working because they feel/know they have to, feeling/knowing they have no other choice. Knowing what it is like to live on such a minute income I really do understand and it is exactly why I resisted as well up until I couldn’t. And if I could change that, I would, for the same reason.