Living with disability and chronic pain in Ireland. Ehlers-Danlos syndrome, chiari malformation, hip dysplasia, dysautonomia, hiatal hernia/ GERD etc. Taking part in the campaign to reclaim the word cripple as a positive. Ex cancer patient (Hodgkin lymphoma). Very pro-choice #RepealThe8th. Atheist/ sceptic/ scientific thinker/ anti dangerous woo. Love art, photography, animals and vintage toys. Trekkie in between all that... May contain sarcasm and crappy puns.
🧡 I’m supporting Rare Disease Day for all my sisters and brothers worldwide who have the rarer forms of Ehlers-Danlos Syndrome.
🧡 I’m supporting Rare Disease Day for my baby bump, who will be born in to a country that does not facilitate basic healthcare needs for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.
Some months ago I came across yet another health guru spewing the usual crap of TOXINS and CHEMICALS (OH MY!), and using such words in a way that you immediately know they have little concept of what either term actually means. Except this charlatan was different. This modern day snake oil salesperson was caught out, in a very public way.
Source: Facebook
For those of you that don’t know, bushy-tailed, bright-eyed Belle Gibson created an app (and later a book) called ‘The Whole Pantry’. In this she began her mountain of lies -having brain cancer, her cancer spreading all over her body, saying no to conventional (IE real) treatments and insisting that she was being kept alive by whole food goodness, #WokeAsFuck and all that. In 2015 media investigations revealed that not only had she fraudulently collected money telling her followers it was for charity, but she had in fact made her whole cancer story up from thin air and even lied about her age as well many other details of her life. She was a pathological liar, wanting fame, attention, pity and a quick buck, and it wouldn’t stop there.
She lied for years about having cancer and made up doctors - Source: The Whole Pantry
When pressed in interviews she blamed other people (including imaginary), played the victim, tried to distract from the questions being asked and most importantly -played down her role in persuading cancer patients to follow her example; health advice she had dished out so easily with little regard for others wellbeing. And that really is her biggest crime of all. She spoke directly with cancer patients and give them hope and guidance, she pretended to be one of them and stood as a beacon of health and wellbeing. She preyed on the most vulnerable and right out lied that she could prevent them from dying, as she had done with herself.
But we aren't blameless here. We are a gullible society, wanting to believe in magic and fairytales, too lazy to look beyond and question, too egotistical to say "I don't know enough about this topic" and maybe we should listen to the real experts. We want hope and romance and we want it delivered by blonde white women in stylish clothes.
Hi everyone,
thanks for stopping by! Here goes with all the boring health updates. Starting
firstly with the obvious, the important London stuff including upright MRI.
At the start of the month myself and Bicky set off for London for the upright
MRI and to meet with an experienced physiotherapist there. We booked three
nights in the hotel, knowing that travel is very difficult, tiring and painful.
And from what I had heard the upright MRI is no picnic (plenty of rest needed
afterwards -not travel). Flexing the neck triggers the symptoms we are there to
investigate in the first place.
I spasmed, jerked and gagged during the long and slow scans. But all in all I did
pretty well and was quite proud of myself. It wasn’t pleasant, to say the least,
but the staff were lovely and understanding. Afterwards I vomited, the gag
reflex was just too much, but that was after the fact so I’m not counting that,
haha.
Physio
The
next morning I met with the physio, and what an experience! I don’t think I’ve
ever had such a comprehensive and educational appointment. I learned so many
interesting things about how my body works. The lovely physio didn’t have my
MRI results, which the consultant had hoped she would by then. But by simply
feeling my spine and areas of my body, she was able to tell me a lot about what
was happening under my skin.
Spine
Feeling
along my spine as I moved my head to the sides, backwards and forwards, she was
able to tell me that only part of my cervical spine was assisting in this movement
-unlike with the average person, who moves parts of both their C spine and
their thoracic spine. My T spine is locked and will not move on its own,
causing pain to the overworked C spine. She pointed out that our bodies are
quite amazing, in that if they can’t do something in the normal way, they will endeavor
to find a way – even if that way is injuring us -“Your body will find a way to
make that movement if it can”. So interesting.
Image by Freepik
This explains one of my longest running symptoms and major causes of pain. As a
child I called it “spine freeze” but this is NOT a medical term, merely a
childish way of trying to explain to doctors what was happening to my body. On
lying down my spine would seize entirely, although more so focused at neck and
mid back areas. I could barely move, and any tiny movement felt like my spine was
about to snap. It was like one, long unflexing pole. It was both terrifying and
agonising in equal amounts when I was a child. I still experience this phenomenon
but only a few times a month. Sometimes
I feel what I call twitches when standing/ sitting, but I can unlock these. Unlike
when I’m lying down and I just have to wait it out. While still scary, the
lesser frequency has helped, as does age -I suppose I got somewhat used to it.
As mentioned in the summer, I've started seeing a physio at last -one who knows a bit about EDS and willing to keep me on. Through her I was also put in touch with an occupational therapist, who was able to fit me with suitable to finger splints as well as a few other hand/ arm supports. The ring splints are truly amazing! I have so much more movement in my fingers, and they dislocate a lot a less. From typing, to even coughing into my hand, my fingers were honestly just crumbling and in a state of dislocation 24/7. So these have helped a lot. These tiny bits of plastic really do so much work. An exoskeleton of sorts. Next I need to inquire about something for my knee.
A post shared by ☾Kitty Colbert☽ (@kittypotpie85) on
I also had a visit to the house to see what could be fitted. I turned down most things -I have issues getting in and out of bed but don't feel I require anything yet, I don't feel I need bars at the toilet as I have the bath one side and cabinet the other side so use them to sit down... The one thing I accepted was this beauty of a perching stool. The slopped design of the seat means that I can get far enough to the sideboard to chop vegetables, do the dishes, etc, but I'm also leaning on the seat comfortably. Perfect on days when I can't stand for long.
I became friends with Sarah around 2003 as we were part of a wider group of friends (scup the dirty AOH grungers, haha) and we later lived together.
I inherited the semi-famous Tubby cat (AKA Tubbz) from her, spent Christmases together (AKA St. Spickets), became godmother to her beautiful son Cian, and later devastated by his untimely passing. We've also been through many a carton of wine, mountains of white tights, bottles of Bucky, buckets of bobble hats and a million different hair colours between us!
Q. How do your illnesses effect pregnancy and child birth?
This January marks a special time in my life -it marks mine and my beloved's (known as Bicky on the blog -Bicky and Blanky being nicknames we gave each other in the early days) anniversary. Seven years together. Seven fun, dramatic, wonderfully adventurous years spent getting to know each other, and discovering ourselves, too.
*This is NOT a sponsored post*
As some of you may or may not know, I have a condition called dysautonomia (possibly the POTS variety I feel as I have tachycardia issues, but as it's being classed as a secondary condition in my health case, no one actually cares enough to A.) find out which type, and B.) actually treat it). Click the word which links to further info, but in short -it is a default with my autonomic nervous system, which just about affects everything in my body -all the stuff your body does without having to think about it. Heart rate, BP, temperature control, digestion, breathing and so on. So with that said, obviously the symptoms are numerous and everyone can have varying outcomes. Some people can work, some people have digestion issues while some don't, some people can control their fainting or never feel very dizzy at all, while others faint all the time.
The fainting response is in regard to low blood pressure for the most part. Think of like when you (assuming you are an average, healthy person) get up too suddenly sometimes and have a massive head rush, and feel dizzy as an outcome. This is because your body takes a moment to adjust in the change of your posture when you go from sitting to standing, your blood rushes a bit from your head, and so you get a swoosh sensation. In healthy people this is temporary, and you will rarely even notice it as your body adjusts so quickly to the change in movement. With people with low BP/ orthostatic intolerance issues, this head rush is often prolonged (orthostatic intolerance) -your body is an idiot and can't adjust quickly to the change in posture. Sometimes you might not feel too dizzy or sick on first standing, but can have symptoms the longer you stand.
"Woah, wait, what has she done here? What's going on?",
"Sir, should we send blood back upwards towards the brain?",
"No, no, wait a minute. I want to be sure first that she has changed positioning. Leave all that blood down in here legs. Make her heart beat faster, too".
... I don't know which body parts are chatting here, lol, but you get the gist. My body is a dope and I'm allergic to standing up. This is why you'll also notice that I sometimes will wear compression socks (only a recent thing) which I should do all the time, really, but I'm still adjusting. These socks prevent the blood pooling in the legs so much.
It's important to note that in some case sufferers even have high blood pressure, rather than low blood pressure. I myself notice that mine seems to rocket sometimes very temporarily while standing, before swooping low and staying there.
I'm very used to be dizzy and have little tricks to control fainting (not that I even stand or walk much these days, so that helps, ha). I go through phases of being worse than other times. I eat loads of salt to keep my BP up and sit down when I need to. I find I'm not as bad when physically walking, with the space around me changing constantly (I do feel sensory overload but at the same time more stable in ways). It's standing in ques and such when I feel in the most trouble. In some regards an episode of low BP and other associated dysautonomia symptoms can feel like a panic attack -it is the same fight or flight response that you body typically goes through in both experiences. Hence why it can be hard to diagnose or even spot yourself, especially if you are a young woman. You tell a doctor these signs and symptoms, and panic attacks are their go to. Diagnoses can take years, if ever. Other symptoms sound so disassociated and general, as they are pin pointed in every part of your body. It's such a confusing illness!
"What's happening... all the controls seem to be going haywire!",
"I don't know captain, I think we're going to have to shut things down until we can restore full control. I can't regulate the heart rate, BP or any of the main controls"
"Shut it down, go into emergency mode, stat!".
...Something like that, anyway! My body is a fucking idiot. It doesn't know what it's at or doing most of the time, and as a result, when I'm at my most sick it simply goes into shock and has a meltdown. Fight or flight. It literally can't deal with me standing up. Sometimes I may have to sit down, to restore blood upwards to the brain, but other times I simply have to lie down completely and wait it out. Check out this video from Dysautonomia International.
I've been so unwell lately, that I'm quite nervous about attending. I've had two social occasions recently/ the last couple months that really took it out of me -even though walking was limited on each occasion as much as possible. Where once an event (sitting down, relaxing, not really doing anything) would have had me in bed for the next day or two afterwards, events (of any kind) now have me in bed and in pain for days So while I have to choose wisely and have a massive sense of guilt about attending, I'm still determined to go.
Guilt might like seem like an odd term there... I suppose I should explain.
As you may have read in previous postings, or even rants on my Facebook page, every activity takes so much more energy to accomplish when you are unwell. Hence where the spoon theory comes into play (although it isn't always as straight forward). I have to pick and choose small activities as well as the bigger ones -which is important to do now, which can wait. This ranges from getting dressed to walking the dogs briefly, to doing the dishes or to bigger events like socialising.
If I choose something on the top scale today, going to socialise with a friend for a couple of hours, then I can't do anything else that day or the next day. If I do the laundry and wash the dishes then I will have to nap and can't play with the dogs. If I wash my hair then I can't make dinner and Bicky has to make it (which he does loads, I'm not at all being sexist and saying women should make it, LOL! Just of course I also enjoy doing it and want to help out more often). It's give and take and many times I feel like I'm letting others down, in never ending and forever loosing battle to accomplish as much as possible.
I desperately want to work full time and miss my job, even part-time, but I get up and use my energy to get dressed (yes, that's how ridiculous it is) so then I need to nap or at least rest for a while. I need to get up extra early to prep myself -take my pills, sit up and try get my BP higher/ normal before standing, pop my joints into place, move my hands and feet to try get some feeling back into them (peripheral neuropathy issues). Of course sleep is something not really in my control, and either is waking up. From "painsomnia" to phases of sleeping 20 plus hours, completely knocked out and non responsive to anyone trying to wake me. It's an endless rotation.
It's the end of March. Not long until summer now, not long until the end of college, not long until little Kitty rests her weary bones (and muscles, and nervous system, har!).
Summer will see me take the time out I need to concentrate on health, maybe push for surgery, and see where I can go from there...
Marching on; one paw in front of the other!
...The solar eclipse of 2015 was an amazing experience for me. I remember the one that occurred when I was younger -I still have the newspaper clippings. Wish I had better photos, but it's the experience
Just a quickie to give yas an update on the whole medical card situation...
Those who follow me on Twitter will know that I was recently told by the HSE over the phone that I had indeed finally been granted a medical card!!! -After 9 months of waiting, having cancer, spending loads on medications and getting over cancer... But still, at least I can use it for my other tablets, and I get to see a doctor for freeeeeee! Freeeeee, I tells ya!
...I'm off to celebrate now with some Calpol and antacids -Just because I bloody can.
Oooh, cannot believe I forgot my own blog's birthday :P -Bad blog mama! On September 6th, my little project was 1 year old.
I began this as a journey through ill-health (Hip dysplasia, nerve... shite, spastic... something or other, GERD, hiatus hernia and Dysaut... dizzy-tomnia... or something something) and diagnosis... And soooo, have had feck all appointments or updates as of yet! (Cheers, Irish health system)... But instead, I've entertained you with my bleak views, boring fur-babies and many, many sarcasmos (It's a word now. Because I said so. Also, why is anyone still reading? I'm bored already, and it's my blog. "GET OFF MY BLOG" -In a Peggy Mitchell voice. Sorry if you aren't in Ireland or UK and don't get the reference), and of course not to mention my cancer diagnosis, treatment and recovery (Cheers, Irish health system -this time without intended sarcasmos).
Soooo... As I've told yous all in a previous post, my doctors were pretty sure the cancer was gone, although they wouldn't take the plunge and use the 'R' word... and they still won't, har! But as I said, it's only a word... But -as of September 16th, 2014, after receiving CT results, I am officially cancer free.
I would like to take this chance to thank my family, friends and of course my dear Bicky who has both financially supported me through this time and made me laugh all the way through it... Again, I have to say, in the grand scheme of things, I am extremely lucky -As far as cancers go, I had a mere cold and nothing more.
I also need to thank my amazing doctors and nurses -without their advice, exceptional bedside manners and their honest/ blunt/ realistic outlook on the situation, I never would have coped as easily as I did. Especially in the early days. I really don't think doctors and nurses get the credit they deserve -especially in regards to cancer. Constantly, especially over the internet, they are undermined; their opinions viewed as
And so here's the happiness posts for Monday and today... This experiment is harder than I thought! Either that, or I'm a narky bitch! ...If so, doing this may be the cure for that...
Monday 26th May:
Doggies
When in doubt what to be happy over, animals are a good choice. On this day, my sleepy little fur-babies (aka dogs) were the things to make me happy.
Emily
Louis (Lou-Lou bear) and Simon (Bicky)
Tuesday 27th May:
Juicing
I've had a really bad day with hip pain -sore to lie down, sore to sit up, sore to stand and near impossible to walk. So it's been hard as feck to find something to be happy about. I would usually say 'bed' in this circumstance (har) -Although as I said, cannot get comfy lying down... so bed, you can kiss my ass ya shithead...
As yas all probably know by now, I adore my juicer. Bicky too. It's a deadly way to get in the extra vitamins when ya just can't eat any more. After researching it a bit, we've decided to do a total juice "detox" (for lack of a better word, I'll use the dumb, unscientific terminology) -that is, eat nothing, just get all our nutrients from vegetable and fruit juice.
It's a great way for obese people to lose weight, while resetting their taste buds -from what I've seen and read, after about a month of doing it, when the participants go back to eating, they actually crave vegetables and fruit -rather than their usual chips and cheese burger (chips=fries, for my US readers). This can only be a good thing. This is kind of what happened to me when I was 13 and half-ish and decided to stop eating meat -I eventually went from being afraid of certain foods, to loving them. The more you consume something, the more you actually do like it. That was my main reason for turning to a mostly vegetarian lifestyle -I had extreme food issues (like many people -nothing on the plate could
Continuing on from last Friday's beginnings of '100 days of happiness', here's Saturday and Sunday's happy times...
Saturday May 24th: Vegan banana and biscuit 'ice-cream'
I came across this vegan 'ice-cream' recipe totally by chance, and as it seems very popular amongst veganists... veganites? Vegan people? ..Thought I should probably give it a go. It's really simple, surprisingly similar to ice-cream and quite healthy (but of course).
Ingredients
Bananas -chopped and frozen for about 24 hours, or longer (I used about 6 to make a big bowl)
Soya milk (I used about 300ml, but you can leave this ingredient out altogether and just use the bananas)
Chocolate bourbon biscuits (I used about 5... Surprisingly most
I've seen the '100 days of happiness' posts around Facebook and thought I may as well join in, partially to celebrate finishing radiotherapy, and in general, everyone could do with a bit of happiness -Thought I'd share mine around! ...I'm such a fucking hippy these days, I know. Or crusty... Is that the smelly ones? Yeah, crusty.
As you can expect (and as I've seen with everyone else's posts too), most of these will probably be food related (well, at least until I do the 28-day juice thing, but that's a story for laters...), and sure why the hell not?
Guna kick this shit off with my vegan cauliflower and asparagus soup. This is sooo what made me happy today. This recipe is stupid-easy to make. As well as quick, healthy, cruelty free and tasty as hell...
Ingredients
Cauliflower (fresh or frozen) -around 3 cups worth
Me. Smoking, throughout the years... Aww memories. Proof that I was cool once.
As you all probably
know from previous posts, I haven't suffered too badly with side effects -or
because of existing illness I may have a high tolerance to such things (See
here for a reminder of this: How being sick helped me cope with being sick). However, these are short-term side effects.
Long-term side effects of chemotherapy and radiotherapy are a completely different
story.
Chemotherapy
works by destroying all rapid growing cells –including good cells. This of
course, is bad news for your body, and hence why the short-term side effects
include hair loss and nail/ skin issues. Long-term, you may have an increased
risk of developing other cancers (although this can be hard to measure, after
all, we rarely understand what triggers cancer and it’s a lotta guess work).
Short-term, most people feel extremely fatigued with radiotherapy. Other short-term and long-term side effects depend on the type of radiotherapy, and in my case (with external radiotherapy) the area where I was zapped -The two sides of my neck and top of my chest. The development of breast cancer is a concern because I am
Many, many stupid people were
attacked however.
-Like a lot of animal lovers, I think it’s safe to say most the time I prefer
animals over humans. This is one reason that I've recently decided to take the
jump from pescetarian to vegan. In general, for many reasons, it’s been
something I have been considering for a while now. The main reason being, well,
simply, I have nothing against animals. In fact, as I said, I really quite like
them. I wouldn't wish death and torture on my worst enemies (most of the time
anyways… we all have our killer moments), so why would I agree for it to happen
to an animal I don’t have anything against? By eating meat, their milk and
eggs, I'm simply saying its ok to torture and kill them, that I agree with that
system and support it. I really don’t. So it’s time my actions fully reflected
my opinions… simple as that really.
Oh and of course the obvious
health benefits. And NO, I do not think food can cure cancer (fully, as in an
actual, real cure) but YES of course, obviously, fruit and vegetables are the
best thing you can possibly eat for your health and YES this in turn will
prevent many diseases such as cancer (sometimes. we also have genes, environment and plain old bad luck to consider! Not every cancer is the same, not every cancer has the same treatment... etc., etc., I could go on but I want to believe you know all this already) –Just wanted to quickly clear that up; I
am not, and never will, endorse any claim of simply having a healthy lifestyle
to rid cancer. In my opinion, such things only work in conjunction with the
advice and treatments from the real professionals. And supplements can be harmful with treatments, so always check first.
