Okay this is a first… this column will have no underlying humour, it will not be intentionally sad and is definitely not seeking sympathy. It is not even for awareness. Being typed on the computer it can’t even be used for wrapping your fish and chips or for folding up and putting under the leg of a wobbley table. So what the flip is the point?
The point is firstly selfishly for me, to record how I am feeling at this point, ie almost eight years after diagnosis. So here goes …
So firstly I would like to tell ‘me’ how things have changed.
Just before diagnosed the symptoms were annoying and definitely affecting my life, but I described them as annoyingly ignorable … in which case they didn’t stop me doing anything they were just ‘there’ being irritating. I decided to go to the doctors when they became annoyingly UNignorable. In my case it was my dexterity affecting my typing. So I was a touch typist typing the final essays for my degree, and it was becoming increasingly frustrating. So although at the time they were UNignorable they weren’t stopping me typing. When my hands were affected whilst typing I could still type it just took extra effort.
I half heard a rumour after diagnosis that I would get ‘five good years’ after diagnosis. Whoop I thought …. five years is a huge amount of time.
It is until I reached the end of it … then the comment has been ‘crickey five years, that flew by’.
But do I have any regrets over that five years … regrets that I didn’t make the most of my (albeit declining) abilities over Those five years?
I can honestly say ‘no I don’t’. Obviously I really truly wish I didn’t have this thing. However it did immediately make me sit up and take action. It changed my perspective on life and armed with knowledge, I went all out to, as i was told, manage my condition, and get on with my life.
Now don’t get me wrong PD gradually deteriorated over those first five years. Once I thought I’d got the hang of living with Parkinson’s it decided to whisper a new symptom, or whisper about ramping up an existing symptom.
This whispering continues today. I find (not sure if this is correct but this is how it seems to me) that PD gives me a warning whisper about a new symptom before it hits me with it continuously.
So an example today is the ridgidiy in the back of my knees. It started as a ‘oooh that’s horrid I haven’t had that feeling before … crickey that is horrible’. To ‘oh flip that is becoming a regular occurrence’. To ‘I hate this’.
I continue to go through the list of ways of coming to terms with a long term condition those are (off the top of my head so some might be missing and in the wrong order).
Acceptance (obviously should be last and I haven’t reached that place yet)
Denial (haven’t really ever been in this, have always thought, yep I’ve got it). I have never had enough time without symptoms since diagnosis to be in denial about having it.
Bargaining (this for me is a subconscious one. When first faced with this one I said no. However when I think about, every time I donate to a charity, or do a sponsored event, aren’t I not only donating towards a cure, but also saying please I’ve done something good, please get rid of this ‘thing’.
Anger (not at the beginning, but definitely since, and in fact in recent months I now rant and talk to myself and ‘it’ shouting and saying ‘please don’t do this to me’ )
Depression … I don’t believe I get depressed but to be honest i am not sure. I certainly swing between being happy and sad. And i don’t mean sad in a upside down smile way. I mean sad in a spiralling journey of feeling awful that I need to dig myself out of. Thankfully I have been able to dig myself out, although sometimes i need help and assistance from a friend with a trowel.
In 2017, coincidentally, but not intentionally, five years after diagnosis I started writing the blog. Firstly retrospectively telling my little (all true) ‘stories’ about tricks and tips to try and keep the thing under control.
Since then my writing has snowballed and has given me a purpose.
Up until 2017 I was definitely vocal about the condition. Learning very quickly that telling people helped me and them…. so failing at an interview for a shop assistant job just after diagnosis because I was ‘nervous’. When my shaking was due to tremor PD and not nervousness.
Since then i probably overtell, those first five years I told and tried to control PD. Sponsored events, exercise classes, running, diet, volunteering for PD charities, you name it I looked things up, did research, attended appointments, talked to people and did things.
2017 my blog and the end of my ‘good five years’ and when I look back I realise things changed around that time as well. Whoever made that phrase up was correct (annoyingly), certainly for me – and remember everyone is different.
Since then it is becoming more and more debilitating. Walking Stick, Blue Badge, Wheelchair, Walker, applying for PIP disability allowance – all of these things have appeared in my life and has made me realise I am now a person with a disability. When I fill in a form I have to tick that box, When I go to a hotel I need an accessible room, when I go somewhere i need a lift as I no longer drive (due to PD symptoms). So many things.
But I am complicated. For such a lot of the time my PD is present, constipation, freezing, shuffling, crying, shouting, whispering, moving, dancing over moving etc etc. And then occasionally i get tip tops moments/minutes/half hours or so. When there is ‘to the observer’ and actually to me I have NOTHING WRONG WITH ME … like childbirth, awful whilst going through it, but once the event has passed then I forget what it was like briefly and feel invincible and swish and swash about.
Today my PD symptoms switch on and off like a switch. Now i have written about and have videos of me in various types of Symptom State. And have shown how bouncing a ball, music etc can get me walking again sometimes.
I am not sure if I have ever described it to you.
So switching ‘off’ happens without warning. Well, actually with dystonia (the involuntary twisting and clenching in my feet, and now back and neck) I often feel a ‘buzzing sensation in my foot’ which is my warning that my foot is ‘going’. I know I have limited time to get to a safe place as it generally happens when walking. I know that once it starts and gets into its spiral of decline I will not be able to walk on it. I can often still bend my legs, but imagine putting weight on a twisted foot trying to weight bare…. it is precarious and painful.
The other symptoms tend to just appear so all of a sudden typing stops dexterity goes, my legs stop bending, they may slow gradually, but really I don’t realise they are ‘going’ until they have gone, and then I have no idea how long they will be unable to move.
When I switch back on again, either though the next medication or tricking my brain, or just for no reason at all just because it feels like it. That is weird. I gradually realise consciously that i am moving about again. So I could be frozen on the spot, not paralysed, but my legs, for example, could be locked straight and won’t move forwards. When the next thing I find I am buzzing about loading the washing machine and i think ‘oooh moving agian’
I realise it is tempting for people without PD when they have seen this scenario several times to say ‘you’ll be alright again soon’. I know they have good intentions and are trying to make me feel positive but it doesn’t allow for the feelings I get when PD starts to take over. I often think, i just need to get to the kitchen sink, you can switch off then when I’ve made my cup of tea/put the washing on/picked up that sock … none of it important or mind blowing stuff but i can not describe how immensely frustrating it is.
How useless it makes me feel when I need to stop half way through washing up and say ‘I just can’t do it any more’ Friends bustle to take over saying ‘it’s fine I did offer’ or ‘you go and put your feet up’. People probably say ‘crickey make the most of it’. But you do start to feel useless after a while.
So today i have not reached accceptance. The wiseish man has in many ways. When his parkinsons kicks off he will sit and wait, whereas I won’t.
My mood swings at the moment are also horrendous. I would normally describe these as invisible symptoms and maybe if i could hide them they would be. But as you know I cannot hide when I am nervous, PD symptoms kick off., Also.I get incredibly frustrated and shout at PD. A shouting shuffling woman, is not invisible.
So i realise things will get worse, and today is good. I am still going out. I am restrained, hindered, restricted, controlled by Parkinson’s and at times defined by it. But I am still me, I know it will get worse, but I try really hard not to let it be me.
I probably have a tendency to overcompensate. PD can be so visual sometimes that When frozen, mumbling and with a face which will not move I look miserable and awful. When over moving and speaking loudly and I look like a pissed nutter. I do try and overcompensate by maybe overdressing by over speaking by over enthusing as I try to make my personality come through despite the impressions which I sometimes give out.
I realise things will get worse (I realise I am repeating myself), but I hope as long as I continue to ask for help and talk and friends and family and medical professionals are still there for me I can continue.
I am not unique, there are many people with long term conditions in many guises which affect in many different ways. Invisible/visible restricting controlling and restraining. Some may talk about it some may not.
If someone has the ‘ump they might not have the ‘ump they may have an internal struggle you know nothing about. Although you can have the ‘ump and be struggling internally.
My writing keeps me going and talking and performing. Poems and my books may annoying to some entertaining to others, but to be honest I am selfishly doing them for me.
My newspaper column is often difficult to write, but after fifty columns people still seem to read it and I still have people saying to me that it helps them feel they are not alone.
People and writing, friends, family keep me going. I need focus I need to keep going.
Apathy, depression, exhaustion, tiredness, lethargy are all real everyday brick walls,. I can spend days literally not knowing what to do. Others i am a whirling maniac doing everything I can. Often crying often happy often anything at all.
I never know what each day will bring, I never know how PD will interfere.
But i am still doing, being and seeing, hearing, watching, waiting, entertaining , chatting and involving and informing.
I love life
But … PD is completely crap and I really wish it would piss off (excuse me for burping).