Whew, where to even start? Things have been pretty busy since I last wrote here–and as usual, I definitely didn’t intend to be away from this blog for as long as I was! I definitely need to update my symptoms and medication pages here, and I’m thinking that I’ll probably forget something fairly important to mention here in my updates!
The main thing is definitely uni! I finished my undergrad in anatomy about three years ago now, and have been at a bit of a loss as to what to do next because of my health. I was quite a bit healthier during my undergrad–I didn’t use my wheelchair, for example–and so in the interim, I’ve had to deal with things getting quite a bit worse. Anyway, a few months ago I applied to do a Master’s in biomedical science, but was inexplicably rejected for “not being qualified” when I definitely was. A few weeks later, and I’m sure it was weeks, my friend, knowing my aversion to phones but knowing that I’d have more chance to resolve it during a phone call than an email, got me to call up and see what was up. As it turns out, they were really confused as to why I’d been rejected on that basis, and got the course director to reconsider my application. Well, he did, and I’m in!
So, the next big issue was sorting out getting my motorized wheelchair, as the uni is about 50 miles away, thus I’d be going alone without any family member to help me. As I can’t self-propel outside as a rule–and even struggle inside–if I didn’t get a motorized chair, I simply wouldn’t have been able to study. But more about that in the next section! I was also panicking about finances; we’ve never had a lot of money and my parents went bankrupt putting my twin sister and me through our undergrads, as we were the first in the family to go to uni. Because I am only studying part-time, at least the tuition costs were spread across two years. While I thought I’d manage the first year’s costs, I didn’t know how I’d manage the second year’s or what I would do for living costs, commuting costs, etc. (All these people who say to poor people “just go to uni and get a better job and break out of your social class”?!)
Yesterday I got the most amazing news: I have been awarded the tuition scholarship I applied for, which will cover all but £500 of my tuition. We were ecstatic enough, but what had my sister and me screaming was that the organization also awarded me a bursary for living costs! Such a burden has been lifted from my shoulders and I know I am so blessed.
I think I had posted here about my fundraiser for a motorized wheelchair. Friends, family, and strangers have been so generous and I have been very touched. As I got closer to my goal, my family and I set up a local cycling fundraiser with half of the proceeds going to LupusUK and half to my wheelchair fund. Disappointingly, we didn’t have as many riders as was planned, so it ended up more or less just the family, but it was great fun and we made over £300 for LupusUK, so I am very happy! If I post any photos, I’ll let you know.
So, this week I was able to go for my assessment to customize the wheelchair before I order it and I’ve now paid the deposit. It should arrive in about three weeks, upon which I’ll pay the rest of the costs. Happily, we’re only about £100 off now and I’ve had some friends offer to pay when they get their pay checks. I can’t even explain how ecstatic I am. The thought of being able to leave the house on my own again, without having to rely on family, without damaging my joints, particularly my shoulder, any more by self-propelling… It’s just wow.
Finally, of course, health. The biggest news is that recently they found patches of inflammatory damage in my lungs so this week I went for a CT scan so we can see the extent of it. In the last few months, my breathing issues have been quite bad, so I can’t say I’m too surprised, but of course I’m hoping the damage is quite minor. Otherwise, I’m waiting on a referral to urology for a cystoscopy because of bladder issues that are driving me up the wall! My doctor is very surprised that it’s at this extent in someone my age (24). My rheumatologist has diagnosed “sterile cystitis”, which I need to confirm if she means interstitial cystitis (I imagine so), but in any case, the cystoscopy is to check for any ulcers (hopefully not!) and just to see what’s going on in general.
I did have my rheumatologist confirm that my “joint hypermobility syndrome” is indeed Ehlers-Danlos type 3 (by medical consensus, they are the same diagnosis, but I’ve heard it depends on the professional who diagnoses as to what precisely they mean sometimes!). So I’m now an official bendy. Actually, EDS3 makes sense of some of the symptoms we’ve just said “blame lupus”!
Re autism, I have been in contact with my local services, who have offered to help me through the process of a formal diagnosis. I am very apprehensive, despite agreement from various of my doctors including my psychologist that I am autistic. I have been interacting with the autistic community particularly on Twitter, where those with self-diagnosis are welcome and more common than I’d thought. The more I read about autism, it’s like finally finding myself and coming home, but I am terrified of that being taken away from me, although the professional validation will help me, I think, as every so often I swing from being 110% sure and then thinking am I really “autistic enough”? So that’s still ongoing, and I’m hoping to get advice from the disability service at uni too. My main reasons for wanting a formal diagnosis, apart from personal validation, is possibly needing accommodations in school or work, and access to local services. Otherwise, I think I’d be content. Because of my health issues though, both physical and mental, I am also wary of family and friends just thinking I’m a hypochondriac despite autism explaining so many of my idiosyncrasies that they have noticed over the years, so a formal diagnosis would also give me more confidence to disclose to more people in my face-to-face life.
Anyway! I think that’s enough for this post. I must promise to keep updated more often! Generally, I’m still getting on with my hobbies and still volunteering with RNIB and loving it! You should hear from me again soon! (Someone hold me to that, haha!)