Hypochondriac? I wake each day with a bout of flu I got no sleep and have aching limbs too I wake each day with the chicken pox I feel sweaty and lethargic but have no spots I wake each day with tendonitis I've hip pain and everywhere elseitus Doctor Flanrinsto – is not amused Listing your ailments – he is confused I have a shaky hand and shuffling walk The Doctor thinks that I like to talk 'It's a mystery there is so much wrong with you' 'when you are only 42' I was told, I'm not ill So why, give me a pill I was told, I'm not ill To be honest, I feel ill I was told, I'm not ill By a person, who is not ill ‘I am not ill, I have a condition which needs to be managed’ Flaming heck – well, if this is not ill, I am severely damaged by Janet Bric-a-Brac
It certainly is a Difficult Baffling Situation at the moment for the whole wide world.
Pandemic, Vaccinations, Homeschooling, Homeworking, Mask Wearing, Hand Sanitising, Paranoid Androidness, Zooming, Staying In,
My icing on that Crap Cake is Brain Surgery ASsessments and Crohns. Note to self … this is not a moaning column it is an awareness column … it is a very fine line between the two. In fact … sod it I am going in to full blown moan …
Okay assessments involve hospital visits, involve more paranoia (both self inflicted, real, and everything in between).
A digression … I am fed up with this game … my life revolves round blooming illness …. i spend the day taking tablets, reading labels, managing the flipping symptoms so that I can find a spare 2 minutes when everything is working to actually brush my teeth. Brushing my teeth is often unachievable …
Please shut up (not you … me) loads of people have stuff going on … I have the reliance on others, I hate the feeling of being out of control, I hate feeling this way. But ho hum I need to snap out of it.
I certainly don’t want sympathy … I just don’t want to be ill anymore … it is getting very tiresome.
Sorry I will zoom off and come back later when I am more Positive….
PS I am fine just a moment of down ness …. normal annoying positivity will return.
Keep it real
Today I am in a quandary; how much of my life should I include in this blog? What are my parameters? I don’t include my family or friends, afterall I chose to write this blog, they haven’t chosen to be written about. Also, I started it for Parkinson’s Awareness, not for Me Awareness, promising that I would not include photos of my food. It is called Parkinality not ‘ParkinandeverythingthathappenstomeInality’ .
Let me explain …
Don’t you just hate those ‘know it alls’? Those people who dole out advice from ‘their personal experience’? Who latch onto a phrase, repeating it at every opportunity.
”Act when your body is whispering’
Am I talking in riddles?
What am I on about ????
When diagnosed with PD in 2012 it was a shock but I had a tiny amount of acceptance as Parkinson’s was now my ‘thing’. I had always thought that everyone has a ‘thing’, and PD was mine. I was armed, dangerous and ready for the challenge with my amazing support team.
Importantly I had ‘acted when my body was whispering’. Meaning my PD symptoms on diagnosis were, although very real, relatively mild and so I was relatively strong and able to deal with those early years following diagnosis head on. I learnt and discussed and became (a proper medical professional called me) ‘an expert patient’.
Now 9 years diagnosed, PD symptoms are ramping up to warp speed. I am almost at the top dose of medications, meaning I am dealing with their side effects. PD now affects all aspects of my life, from putting on my socks, to making pancakes, to sleep, to walking, to talking, eating, scratching, tap dancing, nodding, waving, opening the fridge, skipping, writing, shuffling cards…. etcetera.
I am now facing brain surgery this year … DBS … deep brain stimulation …. to manage my symptoms. I am facing a series of assessments and if suitable hope to have my head shaved and electrodes inserted into my brain.
I might appear to be being a bit blasé about the brain surgery, but to be honest I’m not. However I have had a few years to come to terms with the inevitability of advanced treatments. I am learning all the time and although I am still scared, I am not totally petrified. And I hope that the treatment will reduce my medication and allow me back some of my life for the next few years (although PD will continue to degenerate).
I am now having a bit of a reverse deja vu moment. Hindsight is a wonderful thing, and I did in hindsight have the benefit of hindsight but I failed to act on it.
Again, my body had been whispering new symptoms for a while. I kept half heartedly listening to the whispering but, unlike PD, I acted in a weak, wimpy way. I acknowledged symptoms but underplayed them, I went through the motions (excuse the pun) of visits to GPs had blood tests, stool tests, stays in hospital, suffered a myriad of symptoms but this time I wasn’t proactive. To be honest I was scared. And anyway I already had my ‘thing’. It seemed greedy to have two.
2021 I am having to come to terms very very quickly with the fact I have another chronic condition – Crohn’s has now given up on whispering, skipped shouting and is now screaming at me.
Crohns is now impacting on every aspect of my life. It is serious and it has to be dealt with.
I am now living with at various times; chronic constipation, pain, weight loss, bloating and toileting urgency. Which have got to the point when they cannot be ignored.
I have now been told my Crohn’s is severe and am being prescribed injectables to try and get it under control.
Things are majorly twaddley …
PD symptoms and injections are not a match made in heaven ….
Ideally my Crohn’s needs to be under control before the brain operation takes place.
The injectables will be immunosuppressants – not great during a pandemic … meaning I will need to super shield.
I need to have a series of hospital assessments to ensure I am suitable for the brain op – visiting hospital during a pandemic when I don’t drive and am taking immunity compromising medication is not the greatest
I am petrified.
One day I will use a proper swear … until that day fukinshtinitus.
But I am on the case …. a little late, but better late than ….
So the point … yes there is one.
There will be others who will be challenging me in the Top Trumps of Disease Championships. Who will be living with Pd and dealing with a myriad of other twaddle.
I still don’t intend including photos of my gluten free pasta and dairy free ice cream. Parkinality’s remit will be subtly expanding, to Parkin(andotherstuffIthinkisappropriatetoinclude)ality
Best foot forward
Clean foot back
And do the Ho ho ho keee ko keee
If you find my marbles please post to me ….
I started this blog way back in January 2017. I started Parkinson’s way before that, but the ‘official’ documented date was November 2012. Now into my ninth year of living with this ‘condition’ life is, inevitably, getting difficult(er).
When diagnosed I immediately walked up and down the stairs a lot and planned a super long haul holiday. I arranged a New Year’s Eve party and booked a weekend away for my pre Christmas 45th birthday. I contacted Parkinson’s UK and rang the local Pilates teacher about rehab for PD ‘sufferers’.
When I say ‘immediately’ I obviously don’t mean in the car on the way back from the hospital. I saved those jobs until the next day.
‘Immediately’ I told the children and rang everyone I knew (my criteria was friends/relatives who I could ring and just say ‘its me’ and they knew my voice so well they didn’t need explanation). (Again, when I say ‘immediately’ I mean when I got home). All knew I had a Neurology appointment. I just rang and said ‘Hi I’ve got Parkinson’s Disease’. It was literally (almost) as quick as that. In hindsight, a little cruel, but I thought I could tell everyone and move on and get on with my life.
My life I knew would never be the same, but at least I had a diagnosis. Despite being told by my Nurse that ‘I wasn’t ill, I had a condition which could be managed’, I immediately had a wake up call. Not that I had been slacking up until that point, but the thoughts of becoming a Dalek over the coming months led to me enjoying the stairs whilst I could.
Over the next five years life continued. I was told that with PD I would have ‘five good years’ and I didn’t turn into a dalek in those first twelve months. The world continued to turn. My symptoms were annoying, gradually interfering more and more with my (and my friends and family’s) lives. There is definitely more than one victim. Difficult for me but difficult(er) for those around me as new symptoms slowly emerged.
Some friends disappeared subtly, some in a flurry. New friends appeared and some acquaintances became wonderful friends. Life was changing slowly and subtly,
I started the blog in January 2017 because for some reason I felt the need for a project. With mixed encouragement I started the blog, invented the word Parkinality and showed it to a local theatrical genius who I held in high regard who really liked it. The rest, as ‘they’ say (whoever ‘they’ are), is history.
I won’t bother writing anymore background. You can go back and read the ‘first five years’, all written as tidy, organised, humorous, in hindsight, essays. When does an upsetting incident turn into a humorous anecdote? I found them easy to write and got a good reaction from everyone. Which in hindsight wasn’t ‘everyone’. I quickly realised those that liked it commented to me; those that didn’t kept quiet … their mothers obviously having told them ‘if you can’t say anything nice, then don’t say anything at all’.
Then the blog went a bit feral … grew a beard (along with my hormonal, menopausal self) and PD symptoms started getting more demanding and interfering.
I now realised the first five years were a doddle ….
Well, maybe not a ‘doddle’, but certainly ‘a walk in the park’ literally having completed annually a sponsored walk to raise money for Parkinson’s UK, one of which was at Chatsworth over 10 miles …
So life continued. I continued managing the condition but, try as I might, I couldn’t stop the roller coaster that is Parkinson’s. I could ‘manage’ quite well, having taken up piano, jogging, tennis, and many other, in hindsight, annoyingly positive new projects and achievements. I say ‘annoyingly’ because those who were further advanced never commented but may well have thought …. make the most of it …. and I am ‘happy’ that I did. I can honestly say I have no regrets (apart from having Parkinson’s, obviously).
On diagnosis that same nurse said ‘I was the same person I was the day before being diagnosed’. Young Onset Parkinson’s (diagnosed before fifty) is, in the main, slow progressing. Five years after being diagnosed ‘I was still the same person, but more knowledgeable, more determined and more focussed ….’. Parkinson’s had become an irreversible, inrefrutable part of my life. I no longer got the odd half day of respite. generally it was there constantly, never giving me a break…. it had become part of me.
Hence Parkinality – Parkin(son’s) (person)ality, it had become part of me. People with Parkinson’s are all different, and all see it differently. Some might say it is not part of them it is an interloper which follows them. Some never accept it, some fight it, some try and ignore it. I have ebbed and flowed through many feelings, however in the main, tried to make allowances, whilst trying to control it.
Parkinson’s is constantly trying to get the upper hand and take control. In the early days, much like a baby, it was relatively easy to be in control and be the grown up. However over time things changed. I changed and Parkinson’s changed. I constantly try to stay several steps ahead, however as PD is getting faster and more agile, I am becoming tired and slower.
After all that deep meaningful stuff I will let you have a snack and warm drink … then I will write again. It is important I refer occasionally back to the reasons for writing the blog. It is not a place for waffle and twaddle (apart from when it is). I feel a responsibility to inform and tell honestly my experiences. This blog is open to public viewing, is shared and subscribed to. I certainly don’t want to misinform, underinform, scare or put a gloss on this crubbish disease.
I write honestly. The next blog will cut much of the twaddle but will honestly tell how things are now. Those that don’t wish to read, its fine to put your hands over your eyes. I often feel the need to write humorously so as not to upset people, but that is a tad silly and to be honest, at nine years is becoming impossible. You are, after all, reading a blog about a (currently) incurable degenerative neurological disease. Expect to be informed, upset, and hungry. It is not a laugh a minute … more a giggle every four days and a Belly laugh the first Thursday in the month,
To be continued
Happy New Year
There are a few things I’d like to do this year.
I want to get on with my life and not live in fear.
I’d like a man in a white coat to drill into my brain.
after he has shaved my head so that I can be ‘me’ again.
I want to write poems filling page after page.
Wear a sparkly dress then perform them on the stage.
I want to sing karaoke with my man in the chapeau.
Dance like everyone’s watching boogie, sway and pogo.
I’d like to spend time with friends having a laugh and a good time.
Holiday with my girls. I just want everything to be fine.
This poem isn’t the greatest. one I’ve ever writ.
I’m impatient to live my life.I just want to get on with it.
1 January 2021
‘They’ say we should be careful what we wish for. Well sod you ‘they’ I would be very happy if I got what I wished for this year.
This pandemic thing is getting in the way of everything. On borrowed time anyway (as we all are, it’s just that those with a disease/wake up call, have had it shoved in their face). To say I feel sorry for those who haven’t had a wake up call would be a bit ridick. I would give (almost) anything not to have Parkinson’s Disease. But it has certainly made me all to aware that we have to live our lives now …
Well Covid lockdown restrictions has put ‘our lives on hold’
Or has it (dot dot dot)
Now the rest of this blog post could be a bit random as I am writing as I am thinking what to write, so no plan of action …. dangerous.
Okay ‘Covid lockdown restrictions has put our life on hold’ … discuss. This should be rewritten as ‘Covid lockdown restrictions has put ‘life as we knew it’ on hold’.
If it had actually literally put ‘our life on hold’, we would be in suspended animation for the duration of lockdown, not ageing or wrinkling at all, we would emerge from lockdown the same age, height, and in the same clothes as we went in.
So I feel the need to re write that phrase … ‘Covid lockdown restrictions has made us rethink how we live our lives’.
We have had to think outside the box … how to maintain relationships when not seeing friends and relatives, how to carry on learning when schools are shut, etc etc.
Now don’t get me wrong I am not happy with this, not ‘ appy at all Mr ‘iggins’.
Since lockdown begun I have …
Got engaged …oooo
Am in the process of moving house …. ooo
Trying to keep Crohns under control
Trying to keep hospital appointments for prospective possible brain op later this year
Now lets address these one at a time.
Crohns – is kicking off something chronic (bit of a joke as it, like PD, is a chronic disease – whoop if i get three I get a cuddly penguin). Alcohol seems to cause it a lot of problems as does stealing Mr J’s twirls (that is what it sounds like). So no gin and no sneaky chocolate. To be serious for a mo I am (mainly honestly) very good and will be punished by The Crohn if I have a sneaky twirl so it is just not worth it. ‘They’ are looking at escalating my medication which is to be honest mighty crap … Parkinson’s, to me, takes over so much of my day to day life that for me it is my priority to keep those symptoms under control just to live my life. However, I have now realised that I need to pay the same attention to Crohns. This is yet another Chronic Condition which tbh at the moment is starting to affect me more and more. I need to give it some priority and get it under control.
Parkinson’s has reached a pivotal point. Side affects from meds are getting worse and the Three M’s (movement, mood, motivation) are swinging between being maddingly happy, madly moving and annoyingly motivational to being moody, morose and motionless. Dystonia stops me in my tracks often using a wheelchair to scoot round the flat.
So my Neurologist is putting me on the list for Deep brain stimulation … DBS … basically this year i hope to have my head shaved and electrodes implanted in my brain.
Sooo ho ho … not a good time with that Covid thingy to be going to hospitals, but i need to and i have to take appointments between lockdowns.
I need a Blood test to assess my crohns situation
I need a series of assessments for DBS
Flip so watch this space i have already had one dbs assessment and am awaiting another three.
So important are these i need to write a separate blog …so i will tell you another time
Keep safe, keep well, keep on rockin
Hindsight is a wonderful thing. The rights to a fly on the wall documentary of Christmas morning would have made a slightly wonky documentary for channel twaddle.
When does a crubbish day become a comedic anecdote? …
Before I begin a couple of points before someone puts pen to paper, makes a few legible marks and posts off to the powers that be.
Firstly even in tier zillion I am allowed to ‘do’ Christmas with Parkinson’s. Believe me if I could shake Parkinson’s off I would . No apologies for the use of the word ‘shake’ as a punny pun. Puns are sometimes all I have to bring the positivity to my day. I can assure you that, even when I appear ‘normal’, Parkinson’s is still with me, it never ‘pops to the pub’ or, more likely in these lockdown times, ‘pops to the ‘Offie’ to buy a four pack of Artois. However in reality actually neither will happen as I often lack the confidence to go out, so if it doen’t arrive in the supermarket delivery order ‘we ain’t got it Mr ‘iggins’
When I am ‘normal’ I feel clear headed, dexterous, athletic, super, smashing and great. I could prepare a meal whilst dovetailing some carpentry and whipping up some Angel Delight, whilst grooming the gerbil. So just cooking Christmas Day lunch whilst sipping a schooner of sweet sherry would be a doddle.
On the other hand I more often am mumbly, fumbly and bumbly.
So erring on the side of caution, I purchased Christmas lunch, please put your fingers in your ears (and a pineapple up your nose) frozen and (yikes), pre prepared. I thought if I did feel Tipperty top on Christmas morning I could always learn a new language in my spare time whilst the prepared meal cooked.
To cut the waffle I will bullet point what happened
Firstly … overslept … I never over sleep. Now when I say oversleep, I obviously still woke to take medication and to check Today’s Special Value on QVC on the tv in the night. But I woke at 8.15am … meaning I took my first morning meds an hour and a quarter late.
Let me explain (please) -‘nighttime’ in PD meds world to me is between 1030pm and 7am, I take different meds at night and take my first ‘proper’ meds at 7am. So this oversleeping meant my timings were all ‘out’ for the day. I had to alter my alarm system which stressed me all day.
my meds were on a bad morning, never really kicking in. I even omitted protein from my morning eating in the hope that my meds would work okay. (protein often interferes with their absorption), so a banana had to pretend to be a special smoked salmon platter for breakfast. Believe me when I say that there is a reason why a Banana Impressionist never won Opportunity Knocks,
Preprepared Christmas lunch was a necessity. I left myself some sprouts to peel to fool myself into thinking I had done something. But they took me the whole morning to prepare, doing a couple and then resting. I wasn’t carving each into a nativity scene figure. Merely chopping the bottom off of each and removing the outer leaves (i realise other sprout methods of preparation are available).
Then sudden dyskinesia meant I burnt my leg on the oven door, and had to spend the rest of the day with cling film and frozen peas tied round my leg. NB please check with a medical professional if you burn yourself, I am not a Burns Doctor in the same way as I am not a Neurologist.
I am boring myself now so I will sign off.
…. it is only twenty four hours later and it is already turning into an anecdote, and the leg burn is merely a scar.
So actually, all things considered we had a good day and ate, drunk and was twaddley. Life and my ability are unpredictable, but at least I have my health (… doh)
PS I wonder if I could insert into Parkinson’s job profile … compulsory two weeks holiday to be taken at my discretion …. unlikely, but actually has anyone with PD ever asked. Then it could ‘do one’ on Christmas Day.