Maybe it’s funny in a rich man’s world, but in my Wegener’s World it’s actually pretty painful.
One appointment has racked up nearly £100 in travel alone and that was the less expensive option. Usually I would book myself in to a suitability delightful hotel the night before my Hammersmith appointment, however today I did early morning travel and stayed at home last night.
Now that it’s April, London hotels like to charge a lot more than previous months so instead I opted for a 5.15am alarm and left my house at 6am. Disappointed that there wasn’t a buffet breakfast to delve in to, had to settle for an Activia yoghurt instead.
This is my main appointment and is a substantial but achievable distance from home, 50ish miles. I make this financial sacrifice through choice certainly, but an element of necessity too. I was being seen locally, but that was literally it; I was part of a herd of patients being seen but not really being cared for. My illness had deteriorated substantially, I had another in-patient stay, numerous A&E visits and yet my consultant would respond by cancelling appointments, swanning off on holiday and I wouldn’t be seen for months.
I was becoming drastically unhappy and my illness was reaching new peaks of activity so I made enquiries and found a leading consultant for Vasculitis in the UK. Naturally he agreed to see me, because I am fabulous.
The alternative is a specialist clinic, one that is focused on my illness specifically. Under the watchful eye of Prof P, who reassures me that he will get me in to remission; and I believe him. I have my full bloods taken and monitored every visit. Today, after I had to divulge that my local hospital had pushed my ENT appointment back to Aug, he even organised for an ENT consultant to see me and see me alongside each visit going forward.
The spend for one appointment is certainly painful. The pain I was in when my liver failed or my illness flares is without a doubt more painful in comparison so there is no question that it is worth it. This one was particularly painful as I had to borrow money to get there as law of sod was I had money paid the following day. Embarassing though.
I have other appointments in addition to this main one, which is additional spending and additional sacrifices.
We haven’t even talked drugs yet. I need my medication to stay alive and I also have to pay for it. The two things pain me and shouldn’t be in the same sentence. I don’t receive anything that you can buy over the counter but yet Joe Bloggs who does nothing and claims everything doesn’t even pay for paracetamol.
Currently I am on 8 scripts a month. If I paid per item that is close to £100 again, each month. Thankfully you can get a pre payment certificate, but it’s all just stacking right up now.
We can add on additional travel costs for the days when my mobility suffers and I need to be driven somewhere.
More still are the urgent purchases of Hobnobs when things really take a turn. Trick is to stock up when they are £1.
Clothes. Oh my word; clothes. Thanks to a hefty diet of steroids, one is forced to renew the wardrobe more frequently than that Average Joe chap. I don’t welcome sarcasm regarding the purchase of new items very well, it is a reminder of a great burden. I have a ridiculous amount of clothes. I have clothes that are unworn and still with labels intact. I have two full wardrobes, full drawers and more.
I also have clothes in 6 different sizes. I have clothes that I love and cannot wear. Clothes that I ‘grew out of’ before I could take the label off. Devastating fact is, the more voluptuous one becomes, the more expensive basics become.
A bystander would be forgiven thinking that my clothing budget is excessive. It is, granted, but it is also necessary. It goes beyond the need to boost confidence.
All this on reduced working hours and a reduced salary.
Oh, I also signed up to participate in a research study, actually my third now. May not find a cure in my lifetime, but if it helps someone in the future not have to endure this hell, it is well worth it.