Taking Steps To Make Life With AS Easier

My planning and organization skills have always left a lot to be desired. I often find myself going on holiday with zero plans on what I am going to do, and on some occasions I have even boarded flights without booking accommodation for the entire time that I’m there. I usually enjoy free-styling and winging my way through life and seeing what happens.

Unfortunately, life with ankylosing spondylitis is a lot less forgiving than a week in Spain and needs to be taken a lot more seriously.

I’ve always kept on top with my medication and exercise routines, but aside from buying a travel walking stick, I have never actively gone out to find ways of making life easier for myself. So I decided that it was about time I nailed down and become my biggest fear – a responsible and organised person.

I dedicated the past week to looking into ways I can ease the challenges of living with chronic illness. I still have a lot more to do, but here is how I made a start.

Transport troubles

I have often found myself in uncomfortable positions on public transport. I don’t just mean sitting on the hard backed seats in the London Underground that are far from arthritis friendly.

Whenever I’m sitting on a packed train and an elderly, pregnant or visibly disabled person enters the carriage, I know the expectation is that I (as a man in his 20s) should give up my seat. The pain and stiffness that I am experiencing is of course not visible to the naked eye. On some occasions I do offer my seat, but other times I am silently suffering too much to give in to societal pressures. I’ve certainly received many a dirty look by remaining in my seat.

Getting a sunflower lanyard

Recently a friend of mine from the chronically ill online community posted a selfie with a snazzy sunflower lanyard as they boarded a plane. After a bit of googling, I realised that it wasn’t just a fashion statement, but also something worn to discretely let others know that they have a hidden disability and that a little consideration would be appreciated.

Further research led me to discover that Sainsburys (a supermarket chain here in the UK) has struck a deal with the Hidden Disabilities Sunflower charity to stock and hand these lanyards out to free to any of its disabled customers.

I didn’t have to show any kind of disabled club membership card or medical letters as proof. I was simply handed one with no further questions. As I need to wear a lanyard for work anyway, I didn’t need to make any drastic outfit changes. I simply replaced my existing one with another that had a bit of flower power. I have been wearing it for the last week and so far I have received a few compliments from my students who probably just think I am embracing nature and I’m yet to receive a death glare from any commuters. So far, so good!

Blue badge

I don’t drive; not by any fault of my health conditions, I’m just abysmal behind the wheel. But the other day I went for a drive with a friend, and we stopped off at a shop along the way. It was a Saturday, so it was pretty busy outside and the only available parking spot was the disabled bay. This meant that we had to park in what felt like a distant land far, far away to grab a snack.

The long trek to and from the shop almost wiped me out and the only vegetarian sandwich left was egg and cress - so it certainly not worth the ordeal!

My friend joked that we would have been alright if I had a blue badge. He wasn’t being completely ableist, it is kind of the joking relationship we have. But he did have a point, even if it wasn’t intended as such!

Having a dynamic disability like AS has always given me self-identity issues with whether I can label myself as actually disabled or not. Because of this, I was not completely sure if I was eligible to apply for this badge, but after some research I realised that I absolutely was entitled to. So, I wasted no time and jumped online to send off an application to hopefully save my future self from a lot of painful walks (and further pain from arriving too late to buy a more exciting sandwich).

The local council can take up to 12 weeks to decide whether they will send me one or not, so I am still waiting on this one. But fingers crossed I will soon have a blue badge that relieves pain rather than causes it like the Chelsea FC crest has every time I've checked the football scores lately!

Reapplying for benefits

When I was filling out the application for my blue badge, it asked me to list all the disability benefits that I was receiving. Unfortunately, the answer to that is none. I had actually forgotten (thanks a lot, brain fog!) about the fact that my application for disability allowances was rejected in ridiculous fashion, and that my appeal was rejected before I had even sent it off!

The enormous impact that AS has had on my life has meant that I have only been able to work part time at a very low paying job lately. So, some extra money so I can afford to not skip meals and keep the heating on to avoid my joints flaring this winter would be much appreciated.

This is another one that I am currently waiting to see the outcome of and I have no doubt that it will be a long and painful process to get sorted. But at least I am taking some steps in the right direction for once!

What steps have you taken to make life with AS easier? Let me know in the comment section below.