The Support (pt.1)

As lonely as it can often feel to live with a chronic illness, you are never truly alone. There is a multitude of options available to support you - whether they are physical, financial or emotional.

In this post I will explore the topic of physical and financial support, and will later be discussing emotional support in a separate post.

When thinking about physical support, the first thought that comes to mind is walking aids. This can be a delicate topic for some, as understandably many people feel apprehensive about using aids such as walking sticks or a wheelchair. Let's face it: nobody wants to be using something like this, particularly at a young age.  

I remember feeling distraught when I was first offered walking sticks through the pain management clinic I attended. It was a step I really didn't want to take, as I felt that the presence of the sticks reinforced my lack of ability. For a long time, I viewed the walking sticks as extremely restrictive and I absolutely despised using them. As much as walking around like a grandma drew some unwanted attention, this multiplied drastically whenever I required to use the sticks. At the time, I could only think about how much they were limiting me. I eventually learned to appreciate them and how many more things they allowed me to do, which I otherwise wouldn’t have been well enough for.

It was a trip to New York that altered my perception of using walking sticks. A huge goal of mine was to be physically well enough to travel to New York for my 21st birthday, so I used this as a motivator at the start of my rehabilitation. Anyone who has been to this incredible city knows the crazy amount of walking involved! Had I not used walking sticks, I simply wouldn't have been able to enjoy the experience I did.

While writing this, strangely enough, an 'on this day' memory appeared on Instagram of me sitting on the steps at the Met eight years ago. Although not immediately obvious, you could see some blue kinesiology tape for knee support peeping through the rip in my jeans with my walking sticks placed alongside me. I won’t lie: it brought up a lot of memories and emotions that I didn’t even realise I must have buried deeply. I felt so much compassion and sorrow for this girl in the photograph, as if it wasn’t actually myself staring back.

Changing your mindset and viewing something like using a walking aid as enabling as opposed to limiting is a game-changer. This also applies to using a wheelchair. I completely understand the feeling of physical and mental defeat while sitting in one. However, if using a wheelchair will allow you to experience more of the things you want to do, then go for it. It doesn't mean you are going to need it forever.

An example of this is requesting assistance at an airport. Some airports are enormous, and for years I was simply in too much pain to navigate my way through them on foot. I made the decision to request assistance for my next trip while standing at security one time. The length of the queue was obscene, and standing for so long caused enough pain and discomfort to reduce me to tears. With assistance, you have an airport employee who transports you in a wheelchair, essentially to wherever you need to go. It definitely made life easier and we would get to skip the queues – bonus! (You've got to take the small wins where you can). Once you land at the other side, there is usually an airport employee holding a sign with your name on it, ready to wheel you through border control.

Sticking with the theme of travel, another option to consider is the type of car you drive (if any). For me, driving a manual car which sat quite low down was out of the question most of the time. It would be a huge struggle to get in and out of basically any car that wasn’t an SUV (another small win is that you get to drive 'shotgun' when in anybody else's three-door car). If I was feeling well enough to drive myself, getting stuck in traffic would more often than not result in tears. The extra exertion required for constant gear changes and clutch control would cause intolerable pain in my shoulder, hip and knee. It was my uncle who initially suggested trying an automatic car and one with a higher seating position back in 2014, and this was extremely beneficial. I secretly enjoyed driving around in my ‘soccer mom’ car, and I stayed with larger automatic cars until just last year.

I sold my most recent car before setting off on my South East Asia trip at the beginning of last year (2022), and so needed to buy something new upon returning home. It might not seem like much to the average person, but it was a huge deal for me being able to shop for cars without needing to refer to a checklist to suit my condition. Automatic gearbox, higher seating position, comfortable seats, heated seating (heat soothed my back pain), accessible controls, etc... The list was never-ending. It may seem trivial simply buying a car I wanted with a lower seating position. However, this, and being physically able to drive a manual gearbox, was a small reminder of how much I have overcome.

There are also many extra items you can buy in attempt to support you physically and make life a little bit easier. One example is the use of a ‘pregnancy pillow’ in bed. The idea of being comfortable in bed seems like some farfetched fantasy when you are living in excruciating pain on a daily basis. For me, any position I found myself lying in would become unbearable, causing extremely disrupted, poor quality sleep. This in itself will subsequently result in a wide array of issues. With the longer, flexible pillow, you can adjust this to support under your knees, at the side of your hips, between your legs or wherever else you find it takes the pressure off of your body slightly. Alternatively, if you share your bed with a fidgety partner, it could be used as a barrier to prevent any accidental (yet painful) knocks!  

An additional ‘prop' which springs to mind is a lumbar support attachment for your car. This slides over the driver's seat and provides more ergonomic support while driving to ease back pain. It won’t work for everybody, but maybe this is something to consider if you struggle with back pain when driving for prolonged periods.  

Something else that slipped my mind until writing this post was a gift somebody bought for me. I think it may have been a little joke initially, but it turned out to be pretty useful. Can you remember the litter pickers you would be tasked with using at school? Well, it was one of those. I know it sounds ridiculous, but stay with me. It is beyond frustrating when you just get tucked into bed and something you need is just out of arms reach. Similarly, bending over to pick something up would often cause too much pain to be worth it. Voila: litter picker to the rescue. This could be something for my lazy kings and queens also, but anything that will save you feeling like knives are ripping through your muscles will receive a thumbs up from me.  

A significant topic which I get asked about a lot is the notorious Blue Badge. This little jewel has the potential to give you a glimmer of freedom and independence, whilst simultaneously provoking envy from people who cannot comprehend what it’s like to actually need one. For context, the Blue Badge scheme allows people with disabilities or health conditions to park their car closer to where they need to go. This could be in disabled bays or in regular spaces without any parking restrictions or fees (this refers to use in Scotland; some restrictions still apply in other parts of the UK).  

If you have read my previous posts, you will be aware of the sneering contempt I was subjected to over the years from using a Blue Badge. While somebody's baseless judgement would not affect me in the slightest today, I was in a much more vulnerable state (mentally and physically) back then.

Prior to having the Blue Badge, I felt unable to carry out simple tasks such as going to the shops alone. I would become riddled with anxiety when required to travel somewhere new if nobody was familiar with parking in the surrounding area. If there was no nearby parking (or if there was not plenty of seating inside), then I simply wouldn’t go. This often lead to isolation from social situations, which resulted in a lot of issues of their own.

The application process for a Blue Badge includes the completion of an online form and potentially an in-person medical assessment. However, some people are automatically entitled to the badge if they meet certain criteria (detailed on the government website). If you are deemed eligible for one, it will be valid for up to three years, after which it may be renewed.

Although extremely helpful, the Blue Badge isn’t some golden ticket which allows you to park wherever and whenever you please. There are still rules which must be adhered to or the council may remove your badge or issue you with a parking fine. Many people are surprised by the issuing of a penalty charge notice, but I experienced this myself after fighting against one for almost a year and a half. Spoiler alert: I lost this battle. Some councils just seriously lack empathy and are, quite simply put, ruthless bastards (Glasgow City Council, I’m looking at you).  

In addition to physical support, there is the potential option of financial assistance from the government. This comes in the form of Personal Independence Payment (PIP), formerly known as Disability Living Allowance (DLA). This government help is to assist with additional costs which incur as a result (directly or indirectly) of your health condition. For me, some of these included the additional expense of paying for an automatic car; taxis if I was in too much pain to walk; reducing my contracted hours at work; various treatments and supplements. Additional expenses may include hiring help such as cleaners to assist with housework.

Once you start the claim process in your application for PIP, a brief FIFTY-page long form will be sent out to you in the post. You read that correctly: 5-0. Fifty. Pages. Long. The application form is divided into two components of ‘Daily Living' and ‘Mobility' where you are scored on how your condition affects you. The first section is split into different categories, some of which include the preparation of food, washing/bathing, dressing, toilet needs, communication and the management of your condition. You should of course answer honestly about how your condition affects you the majority of the time. However, this can be a difficult task when your condition varies quite dramatically from day to day. Depending on the points awarded for your answers, if awarded, you will qualify for either the standard or enhanced rate for each component.  

I would never try to deter somebody from applying for this funding if you need it, but I feel obliged to warn you. I won’t downplay it: completing this form is truly horrendous. You are solely focusing on everything you are unable to do in great detail and it is an extremely gruelling process. It took several attempts to sit down and complete it, and I felt mentally and emotionally drained by the end. So my advice would be to complete this in stages, when you aren't feeling too vulnerable, and to be kind to yourself. Also, ideally at a time where you have emotional support available from a loved one, as there is a high chance you will need it.  

I will be exploring the topic of emotional support in the second part of this blog which I aim to publish in the coming weeks.

As always, thank you for reading :)

Much love, Kirsten xo