The obvious expenses, apart from the loss of my career, are things like the cost of medications and mobility aids. I've taken a lot of over the counter medications over the last 12 years as well as NHS prescribed ones. These costs may seem small on an individual basis but added up over a year, or decades it can get pretty darn expensive. What's worse is that often they don't work quite as you hoped.
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| My necessary poison |
Sadly, I've often found myself in a position where I absolutely need a certain medication (like my anti-TNF injections that slow my immune system that is hell-bent on destroying me) but the side effects are so severe that I end up taking more medication to keep the side effects (hopefully) under control. And then these medications also have side effects and the vicious cycle quickly gets out of control. This is why I opt to take as little as I can get away from. Hubby and I have a little game we call 'Symptom or side effect', said in the voice over voice from a game show.
With regard to prescription medications, I am grateful that we have the NHS for many of these, even if the more expensive ones are not available to us. I don't have to worry about not having insurance because I can't work. That said, I wish I could get insurance as the NHS is stretched beyond breaking point and I can't see a Dr when needed, or get an ambulance when needed. Waiting lists also run into several years. It's a double-edged sword.
This leads me to another expense. I'm not able to get insurance for anything pre-existing and as any future problems can be assumed to be linked to my autoimmune disease I'm also unlikely to get help for unrelated things as well. Insurance companies find any reason not to pay out. So I'm not insurable.
Without private medical in the UK we are at the mercy of exceptionally long waiting lists, not able to choose the right Drs for our cases (as it's really, really hard to get referred outside your health board) and frequently we get sicker while on these waiting lists. The very unlucky can die before being seen.
As a result, with chronic illness, we are often faced with the expensive out-of-pocket costs of going privately so that we don't risk getting worse while on waiting lists. I've been on several for so many years that I've lost count. I have a LOT of different consultants, as no discipline overseas autoimmune in the UK, so this gets very expensive when it costs about £300 per visit per consultant, and that's before any tests or medications.
I'm saddened once again today as a friend of mine is having to pay privately for an urgent operation that she needs as the waiting list is over 2 years on the NHS. Her consultant asked if it was something she could do as she couldn't wait that long. This is awful. What if she didn't have life savings? Many don't.
I have to mix up what I can using the NHS and the private sector, both for myself and for Missy. The sad thing with autoimmune diseases is that there are no cures, just management if you're lucky. So we are stuck in this endless cycle of reduced income and increased costs for the rest of our lives. Even if we go privately we often don't get any help. For instance, I've seen 6 different neurologists over the last 10 years, some on the NHS, some privately. Only now have I found a Dr who is willing to actually try to uncover what the problems are. All too often, despite paying privately, we get fobbed off as our cases are difficult and require more investigation. This is why I stop and think really long and hard before paying to go privately. Often it's for nothing but we can't risk that this might be the right Dr and we don't see them. It feels like Russian roulette with very high stakes indeed. Moreso, when the stakes are your own daughter's health and wellbeing.
Over the last 10 years, I've had the added expenses of buying mobility aids when I've needed them. I started with walking sticks, then a walker, a wheelchair and now also have a scooter. I did manage to find my walker and scooter second hand thankfully. I wouldn't have been able to afford the scooter new at the time so that was a bit of luck.
These, however, are not the most expensive things. I've also had to rejig my house. I've got grab handles, extra stair rails, a shower seat, steps and so on. I've also paid to have walls knocked down and door thresholds lowered (with the doors needing to be replaced) and a low-level breakfast bar installed to allow me to be able to use the wheelchair indoors as well. I spent a long year living in the wheelchair but I usually have to rely on it for at least a few months a year when my condition flares out of control.
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| My second-hand scooter allows me to enjoy the outdoors more often. |
As a wheelchair and scooter user, I also need a car that is able to accommodate them. Thankfully, I can use the Motability scheme to lease a suitable car. The downside though is that I am forced to upgrade to a new car every 3 years and pay another big deposit on top of the lease. I will have to find a better option to this at some point but it did allow me to get a car suitable to my needs when money was too tight to afford one. Often, people think that Motability cars are given to us free but that really isn't the case. I have to pay a deposit for the car (usually upwards of £1000 for a wheelchair friendly one) and about £260 per month for the lease. This is also before any adaptions are paid for.
So far, I've only really discussed the costs of supplementing our NHS and mobility costs. There are more. These are perhaps more difficult for others to see. I have a LOT of chemical sensitivities, both in my food and environment. Missy and I have lots of food allergies and sensitivities so we are buying food we can tolerate rather than afford. We simply don't have the range of choice that healthy folk do. We have to read the ingredient list on Every. Single. Item. As you can imagine, shopping can take us quite some time, especially when hubby forgets his reading glasses! We also have to check the same items every time as ingredients are changed on an astonishingly frequent basis. We found out the hard way many times.
Food, to a point, can be controlled quite well despite it being more expensive. However, my environment is an ongoing and demoralising battle. I am very sensitive to chemicals in 'fragrances'. I get very sick (chemical induced meningitis and severe fibromyalgia flares) if I'm exposed to perfumes, aftershaves, laundry products, cleaning fluids, air fresheners, scented candles, cigarette smoke and so on. The list is endless, but I think you get the point.
In my home, I have some, but not total, control. I make my own laundry products and cleaning fluids. No one is allowed to wear perfumes or bring scented products into the house. So I can reduce my exposure. What I can't do is eliminate it.
Visitors often make me sick by accident. They can be very good and not wear perfume or hair spray that day, which really helps. But it goes much deeper. I often react to the scents coming off their clothes from laundry products, or maybe they have been to the shops where scents from air fresheners or other's perfumes have stuck to their clothes. I can't go near anyone who smokes. We all know how awful smokers smell even if their personal hygiene is really good. Sometimes, I can get away with a mild attack so long as I sit across the room with windows open. In winter when it's too cold to have all the windows open it gets very lonely as I can't invite certain friends or family around until the weather warms.
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| Enjoying the fresh outdoors. I'm pretty sure there was a book in my hands too. |
This winter, I've tried hard to figure this out and have found that an air purifier is very helpful. I have this one. I'm actually considering getting a second one for upstairs too. They are not cheap but are worth every penny to me. Mine isn't a high priced air purifier (as the costs can go into several hundred and beyond) but it does a good job at cleaning the air for me in my living room, where guests usually sit. The downside is the expense. It's not simply the upfront costs but also the costs of replacing the filters every 6 months. I'm hoping I can source cheaper ones but either way, I find that I have felt so much better and reduced the number of attacks I have so much (by about 80% at a guess) that I am willing to pay.
The air purifier only helps at home though. Maybe if it was still the 80s I could carry one around on my shoulder in place of a boombox, but it's not. Public places are very scary to me. The more people around me, the greater the chance of getting sick. I cannot control what anyone else chooses to do. I'm still grappling with this problem. So far, all I've come up with is to wear a face mask in public places (such as hospitals and GPs, shops, or anywhere there are people). I've found some really efficient masks, in pretty colours 'cause that's important! However, like the air purifier, I have to change the filters in the masks after about 12 hours of wear. I still have the ongoing costs of replacement carbon filters. So far, I only know of one place to get replacement filters so I can't opt for the cheapest... yet. I'm still looking.
I'm pretty sure that there are many more examples of how expensive it is to be sick in just my case, let alone for others who also have this burden. I've had no choice since being sick but to find other ways to trim spending in my life to cover the loss of income and the addition costs of sickness. Over the last decade, I've got pretty good at it too. I'll write about my savings over time.
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| Dreaming of a rural life |
I'm very thankful to have a hubby who sees how important it is to save elsewhere to cover these additional costs, so we don't have any arguments over money. We have opted for a more fiscally savvy life so that we have the money to spend on the truly important things, like health and wellbeing, along with such things as travelling, sailing and financial freedom. We look at every expense now and determine what value it offers to our lives. On closer inspection, I'm happy to say that many things have been dropped from our routine spending as unnecessary.
For now, my search for savings continues as well as my search for cheaper (but suitable) alternatives to fulfil our needs. I am on a mission to a healthier, happier lifestyle.
