Health updates - Summer 2017

So it's been a while since I've updated the blog with any health news, and as always things are progressing slowly while the journey to receive any suitable medical care is dragging behind -and it's a constant battle to keep up against the increasing de-conditioning. 

Disability Aids

I suppose the main thing has been that I finally applied, and successfully managed to get, disability payments. It's still means tested, but not as harshly as job seekers, so I get a tiny bit more than I did on job seekers (Bicky works so I'm accessed on that of course). Most importantly though, it goes straight into my bank account. They also just sent me a free travel card, plus companion! Didn't have to apply for it. Delighted. 

I also applied for, and received, a blue parking badge. The rollator doesn't fit in the boot unfortunately, so it can be hard to get it out from the back seat (space wise, between cars). So feeling like an absolute king with all my extra space and rollator. Outa me way, bitches. GP was shocked I hadn't already applied for one, making me feeling an utter gobshite (seriously, there's needs to a how to guide for disabled adults!).

She also said I should also really apply for something called a primary health certificate -they are hard to get, will require a  medical assessment and probably an appeal, but she thinks I will get it and should have one. I've only actually heard that term for the first time a while ago, but from what I gather it makes applying for things (like disability parking permit) a lot easier... Had one of those moments of "Ah, I am so disabled". Which sounds ridiculous -I fucking write about disability for goodness sake, I just completed an art piece for an exhibition on the subject of chronic pain. My social welfare payment is called DISABILITY. Yet and all, when I'm with a GP or at a physio assessment, I'm almost... shocked, I guess, taken a back when they refer to it. I'm not in denial really... I guess I'm just dumb? LOL. Or used to it. Yeah, it's probably that.

Mobility aids 101: trough crutches VS. rollator

Whatever my decision - Mobility aids need pimping up. Always.

I've been trying my best to stay mobile, or partly mobile at least. I've been going to the pool and gym when I can -averaging only once a week so far unfortunately. It's painfully slow and annoying, but I have to accept that and pace. I like the treadmill, as I can walk while holding on to the sides. I don't like the increase in heart rate though (my resting heart rate ranges from 1110-130 due to suspected POTS). I increase the gradient so that my knees are being worked on (like with walking the pool). My knees are my biggest problem at the moment, and my doctor has said I should be working on this the most for the time being.

For a while now I have been contemplating picking up some more aids. The cane is only helpful for good, sometimes medium days. It's of no good to me when one of my knees is playing up and I need to elevate that leg, and doesn't help with practical things like carrying a handbag or when I'm really dizzy from low BP (POTS/ dysautonomia issues).

So I have two options...

One I've mentioned before, both in posts and on the Facebook page - Smart Crutches. These are basically trough crutches, meaning the part on the arm is like a trough shape. They give much more support to patients who have issues in their arms (like with that of EDS, as any of our joint can dislocate and partially dislocate). They're quite liked among the EDS community, so it was the first thing I thought of. They would be perfect for bad days, as rather than the wheelchair, I could still stay mobile (assuming I can walk to some degree) and have support on both sides of my body (instead of one, like with the cane). Also, if I injure my knee, I can use the crutches to hop.

My five year bucket list

As mentioned before, I've been working on and implementing a five year mini bucket list -To complete from ages 30-35 (I'm now 31). I like the idea of a short, temporary list, rather than one big, long list... 

Being ill means I don't always have the luxury of knowing what's around the corner, and planning anything can be hard. Life is very much on a day-to-day basis. So no laughing at some of these rather silly, and small hopeful accomplishments! Or nuggies all round! They may not be a big deal to a healthy person, but as I sometimes need help to the toilet these days, they are milestones in comparison. 

It was reeeeeally therapeutic writing this! I suggest everyone does one.

⊱❤_____________________________________❤⊰

I feckin' love trees

Myself and Bicky spent a lovely Sunday off yesterday in one of our favourite places, Dún na Rí forest park... Such beauty (and practically right on our doorstep) reminds me why I give a fuck about the state of the planet.... And I really, really just love trees. 

It was also a special treat for the dogs as we celebrated a 'birthday' of sorts -Around this time of year marks two amazing years since we were graced with their presence in our lives :) After, they enjoyed a wee play at Bicky's folks/ fur-babies paternal grandparents! 

Mid-way PET scan, exercise and other shenanigans

Sorry to my followers that I haven't been on here in a while -all is still good in case yous thought I was too ill to type :) Have just been trying to enjoy my time off college and work (have decided to defer); although still feel a bit like a useless bum!

So, the latest cancer news: Had my mid way PET scan last week and received results today from the haematologist.... everything is on track, the cancer is reducing and he said he's happy with the results/ it's what he'd expect at this stage. So, brilliant stuffs! I wasn't very worried anyway -I know from the online groups I joined, that even if the cancer had spread, Hodgkin's lymphoma is still very treatable and can just sometimes take longer than expected. But this is great news altogether! Continuing with the plan of 4 cycles of chemo, then radiation. Still to have a meeting about the latter and find out how much. I'm now on my third cycle of chemotherapy.

Chemotherapy side effects: Still doing relatively well with the whole side effects -have been very much so blessed in that way. Previous hip/ leg/ back pain, spasms and stiffness are still actually benefiting from the chemo drugs and have yet to go through a 'bad phase' since starting my treatment.... I'm going to be such a bitch when I finish and the pain comes back, har!
The dry rash on my hands has now progressed to swelling, mainly around the nails, and is causing some pain and numbness. This is apparently due to the drug that burns the hell outa me.

PICC insertion: The haematologist has said that I really should get a PICC line inserted because of this, and my general shit veins, so he's booking an appointment. For those that don't know, the PICC line is a semi-permanent tube inserted into the vein in my arm and up my chest, which will allow for a much handier drugs treatment as they won't have to poke the feck

White hipsters can't jump... or run

So I'm getting more into/ back into this walking malarkey -got my insoles in, got my dogs by my side... and Simon, in case I fall over. He's good like that! Only had time for a 45 minute walk today unfortunately, but at the same time I guess it should be wee steps. The dogs were happy anyway -10 minutes is a huge walk for them sure, never mind 45 minutes. Their wee, silly tiny dog legs and all. They are flat-out snoozing right now, bless 'em.

I'm trying to use this time of steroid-fuelled, not-so-bad-chemo-effects, body-hasn't-copped-on-it's-doing-things-it-couldn't-before phase to get myself into gear and hopefully build up a bit of muscle. Or at least an attempt at running (which doesn't end up with me flat on my face as per usual). So tomorrow I'll be taking my new insoles out for their first test drive in running!
...Or, rather more likely, jogging!
...for like half a minute at a time maybe. But it's a start!
...Or I won't be able to actually do it, and it's the end.
...Whatev's, the gym treadmill lets me hold onto it as I walk quickly. It's nearly like running/ jogging.

On a completely unrelated note:
Happy birthday to my mate Sarah!!! -I'm SCREAMING at you in annoying text and background colours! It's like a 1998 website all up on here!!!! Can't wait for Friday, hot stuffs!!!