In which I vent a little and then plan some fun

[selenay]

Today there was an article on Guardian website about a young boy with muscular dystrophy who's mother had book a final holiday abroad (before he had surgery that would make aeroplane travel impossible) only to find that EasyJet refused to transport his heavy electric wheelchair when she called two days before the flight to arrange the assistance he would need.

They did get to go to Cyprus, but on a much more expensive airline and probably on very expensive tickets bearing in mind how little notice they had that EasyJet would not take them.

I'm not defending the fact that the mother did not check properly what the airline's policy on heavy wheelchairs is. Most airlines have no issues and just ask for prior notice, but she should have checked before booking. It's a good idea to check if you're travelling with anything outside the usual baggage and sharps-free hand luggage. I will need paperwork and proper refrigerating things to travel with my Humira, for example, and I made sure that my archery equipment could be transported when I moved.

What has annoyed me is the comments on the article. There are literally dozens of people saying that disabled people should expect to have to pay more to travel because they are disabled. They should not expect to be able to use cheaper airlines like able-bodied people because disabled people (and the long-term sick) should accept that there are restrictions what they can do. There are a number who go further and state that the disabled should have no right to overseas travel at all and accept that they must stick to good old English holidays. I'm not even going to go there, it's just too stupid.

There are places and situations where we must accept restrictions and have done so. The boy in question has probably long ago accepted he will never go rock climbing. After his surgery, he has accepted that he will be unable to travel by air again and may never be able to leave the UK, even on a ferry. I have EDS and ulcerative colitis. I have accepted that I will never be able to play rugby and that chicken vindaloo is off the menu forever. Why should we accept so much extra expense, though, just to go on holiday? What's wrong with wanting a nice holiday that costs the same as Joe Bloggs down the hall?

Life is already automatically more expensive when you are disabled or chronically ill. There are a lot of costs associated with it that are not apparent until you are in that situation. So far this year, I have spent more than $300 on prescription co-pays and blood work, which will probably end up closer to $700 by the end of the year. That does not include the physio costs, dozens of vitamin supplements, or the transport and parking associated with my care. I had to run the heating at a higher temperature through the day this winter and I used a lot more electricity because I was not out at work, which all adds up. My mobility is good, but if it were not then there would be the extra costs of mobility aids, special transport and all the work-arounds to do daily essentials in a world predicated on everyone being able-bodied.

Just to make things more unfair, the disabled and long-term sick need to pay for all of this out of a smaller pot. We are more like to be unemployed (not through choice - that's a rant for another day) and those who are in work, on average earn a lower wage. I'm very lucky to be working and earning a good wage because my employers are being amazing about working with and around my illness. Not everyone is this lucky. And if some Conservative MPs in England have their way, I'd be exempt from minimum wage legislation there because I'm less worthy than healthy people and should just feel grateful for employers giving me a chance when they could hire someone 'normal'. The credits and benefits available to some people with disabilities or chronic illnesses (I'm not sick enough) help a bit, but by no means do they cover all the extra costs of living.

As daily life is already more expensive for the disabled and long-term sick with potentially lower wages, why should even something like taking a holiday be vastly more expensive than it is for able-bodied people? And more importantly, why do so many people think that this entire situation is OK? It makes me so angry to see that this attitude is so prevalent and deemed acceptable. Argh!



Speaking of long-term illness...

Saw Awesome GI Guy yesterday. The good news is that my bloodowork looks very good: WBC well within normal limits (4.2, so at the low end of normal rather than too high), haemoglobin is up (107, so not normal yet but highest we've seen) and all other markers and function tests look good.

Unfortunately, my body doesn't agree and still shows a good amount of inflammation on examination. As I'm still bleeding lightly and started to get some cramping a few days ago, it's apparent that although Humira is getting my immune system sorted out, it is being slow to get everything healed.

AGIG is reluctant to add another immuno-suppressant with these results. We may have to, but he wants to hold off and give Humira a longer chance to do its thing completely.

Instead, he's put me back onto prednisone to take down the inflammation and really hit it hard this time. Pred also has an immuno-suppressant effect, but different and not as strong as Humira so hopefully my immune system won't get over-suppressed.

I see him again in two weeks to see how things are going and I'm under instruction to call and book in sooner if things deteriorate despite the pred. I'm also supposed to up the pred to an agreed amount if there is no improvement in a couple of days and book myself in earlier if even that doesn't help.

I hate pred. It is a nasty drug and I am conscious that it is causing long-term badness to my body. However, it really helped my back the last time so there is a hope that this will give me a break from the back pain as well as getting my innards controlled. It will take a couple of days to see results, but hopefully by next week I'll be feeling a lot better.


On a lighter note...

Three day weekend! Yay Canada Day!

Tomorrow we're having my aunt and cousins over for a BBQ. There will be lobster, steak, potato salad, and strawberry shortcake. Om nom nom.

Also, my copy of Heartless shipped a couple of days ago - maybe it will be in my mailbox when I get home today?

Over the weekend I am going to replace my walking trainers at the local hiking shop. My hiking boots are great for longer walks, but a bit of overkill for shorter ones and far too hot in the height of summer. They are also impractical for long days shopping or touring places. Sadly, my beloved ancient walking trainers are now just a wee bit too old. I'm assured that if very large rocks can fit through the holes in the soles, it is time to replace them :-D Thus we're going over to the city on a shoe-hunting trip.

Mum and I are going to get my aunt nailed down to a time and date tomorrow so that we can book tickets for Harry. Yup, we're going to be slightly crazy and go on opening weekend. It's going to be so much fun!

And finally, yay for long weekends!