[Video] Happy New Year from my ME flareup

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• Silent Valley • I’ve been wanting to do this walk for a very long time. Slept for several hours after and will take days to recover, but worth it. • • • • #silentvalley #silentvalleyreservoir #kilkeel #northernireland #norniron #ireland #discoverireland #ehlersdanlossyndrome #winterwalks #winterinireland #newyears #christmas #yule

A post shared by ☾Kitty Colbert☽ (@kittypotpie85) on Dec 30, 2018 at 1:52pm PST

If you follow me on Instagram then you'll know I was quite proud to visit a site recently that has been on a list of things I wanted to complete -The Silent Valley Reservoir/ Mountain Park. We walked for nearly an hour and I used only my cane. I had stories up throughout the trip on social media and took some pretty nice snaps with my DSLR.

It was tough, very tough, I could barely bend afterwards to get back into the car. But extremely glad I achieved what I wanted to; feeling quite proud.

Here's some photos of the day and a video of the aftermath, because it's really only fair to show both sides -I could make everything look pretty and shiny in my life through social media but we all know that's a load of bollox. I do myself and my conditions no justice by not representing the truth. On top of that it's harmful to any young, impressionable zebra out there (or anyone with chronic conditions) who feel like a failure for not living up to what many portray online. 

The ministry of silly walks

Finished week two at the hospice. Here’s a quick update on how I’m feeling and doing...

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End of day two at the hospice. Very sore but going great -I’m so lucky to be here as not many EDS patients get a place on this programme. I’ve been doing physio so far but will also have occupational therapy at some stage, and tomorrow I start in the hydrotherapy pool which I’m really excited about. The staff are fantastic. This evening I had a massive pressure headache with vertigo and queasy stomach- symptoms of my Chiari Malformation. It was very bad, after a groggy nap I took painkillers. It’s such a pity there aren’t more places like this in the country for EDS patients, although in saying that if you end up here you are probably quite deconditioned. We need to ensure patients don’t get to that stage, especially when they are young. We need services in Ireland that help people like me from a young age, early intervention and diagnoses is key in not ending up in wheelchair like myself. A real, qualified consultant, a hypermobility clinic that can handle our comorbidities, qualified physiotherapists in each county. Healthcare shouldn’t be a geographical lottery and we should have the services available that prevent hypermobile people ending up here (a place patients go for rehabilitation). I’m going to try and make the most of this experience, while also educating the staff on Ehlers-Danlos syndrome at every opportunity. Luckily they are quite interested on the topic. I’ve ordered some #EDS4IRE badges and hoping to receive them in the post before the end of my stay! I’ll also bring in a printed copy of the petition next week and try get everyone to sign it -never miss a chance to spread awareness and fight for your rights 💪🏻 www.eds4ire.ie • • • #occupationaltherapy #hydrotherapy #cripplebabyblog #edsandhsd #irisheds #irishedsandhsd #ehlersdanlos #ehlersdanlossyndrome #fightlikeagirl #ehelrsdanlosawareness #physiotherapy #hypermobile #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #spoonie #chronicpain #chronicillness #disabilityrights #disabilitypride #chiari #chiarimalformation #intercranialhypertension

A post shared by ☾Kitty Colbert☽ (@kittypotpie85) on Oct 24, 2018 at 1:48pm PDT

I’m extremely lucky to be here. I don’t want to take anything for granted. I try not to make a big deal of the dislocations, I can’t do much to prevent them any way but also I don’t want on record that it’s an issue -I feel like I’m responsible for any other hypermobile patient who gets referred to here in the future. I'm extra carful not to faint or fall over or show any signs of dysautonomia. I’m getting more information recently from the community, and it’s even harder to get in here with EDS than I first thought. Some are refused by letter, not even being met with because they quote “don’t treat Ehlers-Danlos syndrome”. I feel my acceptance into here may be partly because of my hip dysplasia and damage to the joint because of that. The HSE cites this place to deny us treatment abroad under that scheme, but while they can help with the rheumatology side of things (in some cases anyway), EDS is a multi-systematic condition. Dislocating joints and weak muscles are only a part of it. But if the HSE says we can get treatment here in Ireland, we are not eligible under the treatment abroad scheme.

To Dublin hospitals, with love... Etc.

As many regular readers will know, I have not received correct medical care (for any of my ailments really, which are mostly linked somehow, but first and foremost for the hip condition present at birth) because...

A.) Where I live the local hospital is basically closed (no A&E, they borrow equipment and staff from other hospitals, etc.) and the other "local" hospital is incredibly understaffed, underfunded and under-equipped in general (It is the main and only hospital for a very large populous, also).

B.) I was born in 1980's Ireland -That's like 1950 everywhere else, in relation to medical care (and of course in relation to other social issues: such as owning a vagina, enjoying the relations of someone of your own gender, etc., etc., ETC.!)

C.) I do not "scream loud enough"/ I have been incredibly unlucky (referrals going hay-wire, doctors not admitting fault at my birth, etc.) / I avoided doctors for a huge proportion of my adult life/ and a combo of the usual Irish "sure it'll be grand" inside of me that prevents the "screaming loud enough".

And you may also remember that I've recently sent off my referral forms to Cappagh for the much needed hip surgery that I should have probably started years ago, after advice from a lovely, fellow Irish "hippy" that I met online... Well, it turns out,

Gym stuff

As regular likers of my new Facebook page will know, I have recently tried my hand at going back to the gym. This is something I used to do on a regular enough basis -Whilst I could not run outside, I could somewhat run on the treadmill. Running being one of the basic activities I miss doing... Along with general sport and activities which of course, require running. But alas these days, I simply miss walking!

I began my (what became a long) break from the gym gradually. I had to stop when I commenced chemotherapy, as gyms are apparently one of the most germ filled places ever and I had little to no immune system. I did go back briefly after I finished my treatment, but as you all know, my body has declined even further the last year, and with that, my ability to exercise...

I was never a "gym bunny". Lets be clear on that! Haha.. I went once a week, sometimes once every two weeks -TOPS. And the odd walk with my dear friend Christina, coupled with leisurely walks with the dogs. Even these things were struggles, but doable. At one point in my life.

But I really do miss the gym. I love exercising and the rush I get from it... I don't enjoy the pain, of course. How and ever, people need exercise to live and to thrive. And so I recently started going again. I went twice and then joined fully, so hopefully I can keep going once a week to begin with and maybe twice in the future... I just have to remind myself that my "over doing it" is different than other peoples over doing it. And if I forget, I always have the crippling pain to remind me.

____________________________________________________

A couple of FAQ's:

1. What about swimming? I hear that's great as a low impact sport?
It is. But unfortunately, I cannot swim. I have tried several times and

The best days

My favourite days are like these. Some photos from last Sunday -Myself, Bicky and the dogs in Stephenstown pond. Enough said.

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!!!