When I was diagnosed with Young Onset Parkinson’s Disease at 29, I could never have imagined that I would be blogging about my life by 34, sharing my experiences in a bid to help the next “younger” person diagnosed with this infuriating condition; the next person to be told they have a neurodegenerative disease that usually affects “older” people; the next person to leave hospital feeling confused about the path ahead: who to connect with, how to cope, what to do?
I couldn’t have predicted that, post-diagnosis, I would be told by certain HCPs not to attend support groups because they would frighten me, they would show me what might be in store for me years down the line. With the best of intentions surely behind this advice, I’ll never know which path my Parkinson’s journey would have followed had I chosen to ignore it. It may well have been good advice. Who knows? What I do know is that I wasn’t satisfied with being warned not to reach out to the available support groups, so instead I started doing my own research, found an online network, made friends, connected, and began talking, because I had a story to tell, a need for an outlet, a desire to listen and share experiences.
It’s not impossible that I’d be the one setting up a small, informal support group for people with Parkinson’s living in my area. A coffee or two – and cake – and a chat amongst friends: such was my intention for today’s first meeting. Just five of us, all at different stages, with different stories, on different medication, and all with a common interest: Parkinson’s, and a desire to talk and support one another.
I write – talk – for many reasons. I talk because it helps me to understand my situation. I talk because I think it helps others to understand what is like to live with a chronic condition, namely Parkinson’s, and specifically YOPD. I talk because, frankly, if you know me, I like to talk. And I talk because I like to think it provides support for others who might be in a similar situation to me, who can perhaps relate to me, who may or may not have their own support network.
After six years of talking about Parkinson’s online, I’m talking about it in person, and I think it’s going to do me – and hopefully a handful of others – the world of good.
I’ve struggled to find the time or energy to write lately, but my recent silence is not for want of having anything to say; I just hadn’t figured out where to start.
At the start of 2020, we joked about how things couldn’t get much worse than last year: what with my husband’s cancer diagnosis and treatment in the spring, the kids getting chicken pox successively at the time of his chemo, the cat getting run over in the summer, and then our next-door neighbour setting their house on fire a few days before my son started school, amongst other things. I’m not going to lie – I’ve had better years. But a pandemic in 2020? You’ve got to be kidding me. I cried in the kitchen when it was formally announced that the schools were closing back in March. Everything over-spilled upon realising the severity of the situation. As much as I love my kids, and love having them at home, I’m sure every parent can relate when I say that I also loved our routine as it was. A bit of breathing space for us, fun for them with their friends, the run-hug at pick-up, smiling faces, yet another accident form for bumping ears with another child. Yes, ears. The chat with the other parents at the gate, an impromptu coffee, a consolatory hug. The thing is, I genuinely never took these things for granted before. I didn’t need Covid-19 to come along wreak havoc for me to realise how lucky I am, to know how vital and valued human contact is in my life. I live with a chronic neurodegenerative condition: I spend all of my spare time volunteering so as to be around other people and not confined to home. Because one day (sooner than I’d probably like), it is possible that I will have no choice but to be confined to home.
At the start of lockdown, I plunged myself into the ‘home-learning’ (mainly craft, let’s face it) side of things with the children, which I enjoyed very much at times – as did they, I think – but also to distract me from all the small, yet hugely important, things I was missing so much. Growing up, I always thought I would be a teacher, like my parents, so I’d be lying if I said I didn’t take some pleasure in setting up activities for the kids, seeing them not only enjoy them, but taking pride in what they achieved, however small a task.
But it hasn’t all been plain sailing. As the weeks went by, enthusiasm from both sides did wane. What seemed novel to the kids to start with fast became habitual and, as such, not as fun. Cosmic Yoga was cool for the first few weeks, but soon became a chore. Even the Pokémon one, and that’s saying a lot. With my husband working throughout in our loft, he and his customers had no choice but to endure my kids’ frequent screaming (and mine). We are fortunate, though, that he was able and already set up to work from home, selling wine throughout lockdown to supply the nation with a popular coping mechanism. I put every ounce of energy into making sure the children were happy and entertained that I possibly overlooked my own health in doing so. I have been exhausted, and with no access to my usual exercise routine, I have noticed a definite decline in my motor function over the past three months. I could go for a run, do something in the evening, but that’s easier said than done. By mid-morning by left-hand side is usually slowing down; by mid-afternoon my walking has deteriorated to the extent that my left-hand-side drags along, trying to keep up with my right.
With this in mind, the decision to send the kids back to school/nursery for the few remaining weeks before the summer holidays was a fairly easy one, and I don’t have any regrets – it was the right choice for us. It’s a much debated topic and every parent will have different reasons for keeping their kids at home or sending them back, but having been all cooped up together in our small house for so many weeks, for the sake of all our sanity and my health – not to mention for them to be in a different, stimulating environment before spending another six weeks at home – we didn’t hesitate for too long when going back became an option. As a younger person with Parkinson’s, it’s unclear to me how vulnerable I might be in terms of susceptibility to Covid-19 or complications in the event of catching it. The school have done an amazing job; I feel a lot of confidence in them.
I miss my family. My parents live a few hundred miles away, so there’s no option to pop our heads round the garden gate to say hello at a safe social distance. They live slightly north of Durham, but it’s not like we’re going to do a Dominic Cummings. No trips to Barnard Castle (or Northumberlandia) for us. We video chat, and I’m grateful for the technology we have in this day and age to be able to see them, albeit not in person. But it’s not the same as a hug with your mam or dad. Even parents need parent-hugs.
I’m a realist verging on pessimist, so I struggle to be positive about anything to do with the current situation – the death toll, the impact on the economy, the uncertainty of what the future holds is all too serious to sometimes see beyond. When you live with a chronic condition, time is precious; when you don’t know what your state of health will be in the next year or two, it’s hard to look forward to plans for subsequent years. However, this time spent at home with my husband and children will be time I will look back on fondly in years to come. More family meals around the table, drawing together, learning. Growing. It feels like the children have grown up so much in such a small space of time. My son lost his first tooth and it felt monumental. The world may be testing us, but there is pleasure and joy in the small things.
Let’s face it: 2019 was shit. For a lot of people. For many reasons.
Moving into the new decade, I took the decision to take a brief hiatus from blogging (which I only ever do for the pleasure), with the intention of focussing on my family, my work, and an anticipated house move, hoping to reduce any potential stress that could exacerbate my Parkinson’s symptoms and slow me down. The prospect of my disease progressing – which, of course, it will, is daunting. Our reality today, however, is extremely unsettling. So with the confusion and chaos of Coronavirus rife, and the prospect of self-isolation on the horizon, if not yet on the cards, what better time to resume blogging?
It is unclear what the impact of COVID-19 will actually be, if contracted, for people with Parkinson’s, it being a novel virus. As a younger person (age 36, dx at 29), it would appear that there is no increased risk of me either catching the virus or of it having any more serious an impact than for any other person. As we all know, though, the majority of people with Parkinson’s are older than I am, and more likely to have comorbidities, thus falling into a higher risk population with regard to complications related to any flu, pneumonia, or even Coronavirus. We must look to support everyone around us at this time – albeit most likely from a distance.
Anxiety is prevalent in people with Parkinson’s, and the current hysteria surrounding the novel virus, apparent in local panic buying, is sufficient a trigger; I have to admit that I was relieved to pick up my latest two-month prescription this weekend, the timing for its renewal for once just right, in spite of my recent spate of bad luck.
I’m also fortunate enough to finally find my IBD in remission. A change in diet on 1st January, cutting out all meat, has vastly improved my ulcerative colitis to such an extent that I have completely stopped all medication for this, which is in stark contrast to last year’s dark autumn days, when I was flaring, on steroids, suffering from insomnia, and extremely concerned about my mental health as a result. Had this turnaround not happened, the next step would have likely been an immunosuppressant; the prospect of taking such drugs alongside my PD meds would have made my anxiety skyrocket right now. Again, I’m lucky to be in a good frame of mind amidst today’s confusion and uncertainty. Others may not be. Check on your friends and family. Find out how they are doing. Reach out if you haven’t heard anything, talk where you can. It’s as important to keep calm and keep minds at ease in the unknown.
Looks like I’m back. For a while, anyway. Let’s see.
After deliberating for a very short moment, I decided not to write a blog post about my highlights and lowlights of 2019, not seeing fit to waste precious typing time recapping what I can only describe as a challenging year. I’ve tweeted a bit, posted on Facebook a few times, but I haven’t found it in me to go back over everything. And that’s OK: I don’t think I need to. It’s time to look forward.
I’m not one for making resolutions either – they’re all too easily broken – but this year I hope to continue to try to make the most of every day, to keep working as hard as I can, to keep volunteering, which I love, and to bake a bit more, which I enjoy. I want to capture as many memories of my children as I can, to start a memory jar (to be opened on my birthday, the last day of the year).
As my condition progresses, my dexterity decreases, so I need to make the most of being able-bodied. This means going to the gym as much as I can, and forcing my left-hand-side to do tasks that it now finds difficult and unnatural. When I was first diagnosed at 29 – over six years ago now – my only motor symptom was a tiny tremor in my left little finger, and, I suppose, my reduced arm swing. Now, having just turned 36, my tremor is much more visible, but I also get very stiff and, at my worst ‘off’ times, really shuffle when I walk, having to kind of drag my left-hand side behind me. I’m due to see both my nurse and consultant in the coming months, and I wonder whether there will be any changes to my medication. We’ll see.
On the IBD front, there’s nothing much new there. My wonderful nurse has just left the Trust, so I’m hoping that I don’t find myself lost in the system. I do wish her the best of luck, as she is wonderful at her job and my loss is certainly many more patients’ gain.
One of our top priorities this year is a house move, which is difficult for us for various reasons. We are now faced with weighing up the sacrifice of losing our current town centre location – being in walking distance of everything I need access to, including my son’s school, daughter’s nursery, GP surgery, hospital, the shop where I volunteer, not to mention the shops, park and meadows we are so very fortunate to have on our doorstep – in favour of having more space, which we so desperately need as the children grow. But we will figure it out. We have to. We’re lucky to be homeowners, this I know, but for the sake of our mental health this move needs to be top of the list, especially now that my husband is healthy – which is another huge relief. If it wasn’t for my son’s school, we would likely seriously consider moving back to the North East, but while this is still an option, we’ve made this town our home. That said, if it came to it, we’re not averse to change.
I’m looking forward to seeing what the coming decade has in store for us, but sod the roaring twenties; I’ll be hoping that the next few years move along quietly and as slowly as possible.
Best wishes for an uneventful Twenty-Twenty and excitement in the ordinary.
As autumn starts to fade into winter, with once-crisp-and-colourful, now dark-and-soggy, leaves underfoot and my shouts of “don’t run!” – in the hope of avoiding an early morning trip to A&E – expediting the boy’s daily sprint to the school gates, so begins my reflection of the months that have passed and events that have occurred over the course of the year that have led me to where I am now, and I wonder: what is normal?
Things seem relatively ‘normal’
right now, after what’s felt like a turbulent year.
My health has fluctuated from feeling better than ever in the first few months of 2019, with the introduction of a gym membership following a neurophysiotherapist referral, regular attendance at Body Combat classes, and boxing with a PT at the gym, to the worst, with severe side effects of a steroid medication used over several weeks to treat a fairly nasty IBD (ulcerative colitis) flare in more recent months. I wouldn’t say I’m in an active flare right now, but with my calprotectin (inflammatory marker) results in the thousands, something isn’t right. Further tests are imminent to try to establish what.
Then there was my husband’s testicular cancer diagnosis back in March. Good grief. Talk about a whirlwind of emotions, fear, and relief. Caught early and treated with surgery and chemotherapy, and now being monitored for many years to come, whilst an utterly shit thing to go through we can only feel lucky that it was one of the most treatable types of cancer there is. I’ve never felt the force of our friends and family rally around us as much as they did at that time, and for that I’m eternally grateful. Parkinson’s is slow burning, progressing over years and stealing little bits of you gradually enough for nobody to really notice, while cancer threatens to snatch your life away, screaming in your face as it intimidates you. Neither are pleasant, but cancer is cancer and, let’s face it, it’s not to be fucked with.
Tom’s surgery fell on 11 April, which was World Parkinson’s Day this year and happened to be the day on which the BBC published an article about my experience as a mother with YOPD and young children. It was well received, I felt, as I read comments and responded to messages from friends and strangers alike from the hospital waiting room. In honesty, it was a somewhat stressful distraction at a difficult time, and it’s a little unfortunate, perhaps sad, that I consequently didn’t really feel anything much about it, such was it rendered insignificant to me due to the importance of Tom’s surgery. The main thing I remember from that day was how cold my husband’s hands were when he came round and how relieved I was that he was going to be OK. Orchiectomy can be life-saving and all that is required to achieve remission of pure seminoma in some cases, the chemo that followed in June apparently reducing the risk of the cancer recurring to a very low percentage, which seemed a no-brainer. In the face of Tom’s potentially devastating diagnosis, we were relieved to already have had our two wild, clever, beautiful children. Decision vindicated. By August, he was given the all-clear, and that’s hopefully that short-lived albeit horrendous episode over forever.
After dealing with cancer anything else seems manageable, despite it feeling like the odds continued to be against us. Our cat was run over and killed in August, and in September our next-door-neighbour intentionally set fire to her house – in broad daylight, luckily, or goodness knows if we’d still be here, our houses being joined by wooden beams.
But whilst it’s easy to get stuck on the negatives, some good things have of course happened. Amongst other things, I’m sure, like the constants of having a wonderful family, my work going pretty well, setting up a new social group for PwP in my area, and the prospect of things always possibly being worse, which is pretty much my mantra, two key things began this year that have been absolutely positive distractions for me in the dark fog that I have felt begin to envelop me at times: the first is my volunteering for Oxfam, where I have made some wonderful friendships in a vibrant group of people, all from different walks of life, and which has really kept me sane. The second is my son starting school, where he is thriving, learning, and increasingly confident, sounding words out to himself and writing secret notes for his friends. I’m still getting my head around his newfound love of Pokémon cards (who knew this was a thing?), though I’m enjoying learning with him and watching him grow. And there’s also something about the schedule, the routine, the (pretty full-on) involvement of the parents in school life that I am really enjoying. I feel lucky to be surrounded by some like-minded, caring, empathetic people, and whilst my son finds his feet and forms friendships in reception, I am finding my feet, too.
So what is normal, then? What is normality?
Parkinson’s at 29 is my normal. I’m doing my best.
What could possibly be in store for us next (year)?
This is becoming a staple comment when I blog these days, but life gets in the way, and whilst I continue to post on social media – something I’ve done a fair bit of lately – I only blog when I feel I’ve something to say that merits more space on the page. Here I find myself this evening, typing one-handed, tired but having had a good weekend with my family; the first since my little boy finished his first full week at school.
My last blog was written in the car as we drove home from our week away last month; a drive that took nine hours due to a nail in one of the tyres. A slow puncture. That’s pretty much what Parkinson’s is, really: a slow puncture that you can fix up temporarily, but over time, no matter what you do to patch it up, things will stop functioning as they should unless you can eventually replace the tyre. If only brains were as straightforward as car parts.
I was wondering what could possibly go wrong next, what with us experiencing such a ridiculous spate of events as a family this year, then, a couple of weeks ago, just after the tyre incident, our next-door neighbour set her house on fire. I was at home with my son when a passer-by (who I confusingly interpreted as a delivery person) knocked on our door and told us to get out of the house, as next door was billowing smoke. Cue a minor frenzy, an excellent and reassuring fire brigade, and quite a lot of police, and, thankfully, ultimately no-one was hurt (though one person was arrested). You really can’t make this shit up.
After feeling pretty confused and angry about the whole thing since it happened, what with our lives and home having been put in danger (the beams cross through the houses right the way through this old terrace of cottages), my IBD flare consequently resurging and having to start on a pile of new tablets to curb it, and with my son starting school and talking about houses burning down upon seeing smoke, today something clicked and I genuinely felt sorry for the neighbour, who was allegedly dragged out of the building by some bystanders. She was already out on the grass verge by the time we got outside, and when I’d asked her if she was OK, she simply looked up at me for a matter of seconds before bowing her head again. What state of mind, what depths of darkness and despair does it take to do something like that to yourself, whilst consciously endangering the lives and homes of others?
It has also really put things in perspective for me in terms of what I have and how lucky I am. I might have a slow puncture, but I have my home, which I love, even if space continues to be a stress factor as our children grow; I have a loving husband; I have my work, my volunteering, and the new playing field that is being mum to a school-aged child. And it’s made me realise that I need to start prioritising myself a bit more – to do what I want, with less stress, to be a bit more selfish – whilst there’s still pressure in the tyre. Because it can’t be replaced.
I’m writing this from the car on our way back from a week in Northumberland, the county in which I was born and raised, and where my parents still live. Despite having moved to Surrey 12 years ago pretty much to the day and loving where I live, I still consider the North-East home, and I still get that almost-home feeling every time we pass the Angel of the North. The drive up was a breeze, despite Little Girl being sick twice within 30 minutes of the journey starting. Driving back we don’t seem to be having as much luck, with a slow puncture to one of our rear tyres, just to add on a few extra slow-moving hours to what is already a long car journey, especially with two young children. All credit to them for being so good under the circumstances, not that we could really have played hide and seek (their game of choice) in the car anyway. Yes, they did ask.
The holiday itself has been a welcome break from routine, and we managed to jam-pack it with outdoor adventures. Uncharacteristically for the north, despite it being August, the weather has really been fantastic; well, the first half of the week, anyway. We took advantage of this by visiting the beach, even dipping toes (and waists, for some of us) in the North Sea, at a lovely part of the coast called Druridge Bay. My Parkinson’s behaved as much as it usually does. As the months and years pass and I slowly progress, I increasingly grab every moment that I can, hence jumping at the chance to hold my son in my arms and wade in the freezing tide, if only for a few fleeting moments.
I took a morning away from the children to visit my elderly grandfather in Hartlepool with my mother. Considering his 95 years, his health is unbelievably good and has been, frankly, his whole life. In recent months, however, he has developed some memory problems, and due to him declining quite considerably since we last visited a year ago, I decided it would be better not to take the shouty ones with us this time: a decision I stand by, as it enabled us to have an audible conversation, a cup of coffee and do a crossword. Whilst my lovely grandfather is confused some of the time, and struggles to find some words (which I increasingly seem to be able to relate to these days, alarmingly), at other times he is perfectly fine, and it was enjoyable to hear stories of pet escapades from decades past, amongst some other interesting tales, even if, sadly, some of his stories are clearly not hinged on reality. I left feeling glad to have had time to spend with him this visit.
Other highlights of our week have included a trip to see Dippy on Tour at the Great North Museum, or the Hancock as I still call it, and we squeezed in a couple of visits to National Trust sites, making the most of our membership, which provides free entry for otherwise costly day trips. Cragside is possibly one of the most impressive locations I’ve visited, albeit less child friendly in my opinion, whereas Gibside was fantastic from start to finish, full of fun for the kids, from its adventure playground to low rope challenge, to den building, a nature playscape, and summer games enjoyed in a field.
Sadly, the same morning had been soured for us by some quite unexpected news. We received a call from a vet local to our home to inform us that our lovely boy Django had been run over and killed. Being away, I’m not sure if we’ve fully absorbed this news. What I do know is that our home will not be the same when this car journey eventually ends, with both cats now having left us after such little time. We were able to talk to the kind people who took him in for us, who wrapped him in a towel and gave him a cuddle after watching him die. I feel so sad at what happened but there is some comfort in that act of kindness, knowing he wasn’t alone.
The last part of our visit was a trip to Otterburn, where one of my oldest friends, along with her husband, has bought a stone farmhouse, from which they intend to run a b&b. It’s a very exciting time for them, and the home improvements they worked on whilst we were there served as a reminder of some of the decisions we need to figure out when we get back to Surrey in terms of our house and whether or not, or rather when and where, to move.
The kids enjoyed a semi-soggy few hours at the Bellingham Show, with delight in getting their faces painted, a pony ride for Little Girl, and my son winning a huge cuddly stormtrooper toy. Can’t wait to find a home for that when we get home.
We’ve stopped once more since I started writing this, and we’re now stuck in traffic, one child asleep and one child requiring entertainment. But we’ll get there. We always do. The puncture is slow, we have time.
For several days, I’ve been trying to sort out my regular prescription for the PD drugs I need to function. There have recently been some supply issues with Sinemet – a staple part of my diet, with four doses consumed per day – because:
Supply issues caused by, well, supply issues. The irony. About as funny as the possibility of the gold standard drug for this movement disorder inducing involuntary movement, which is one of its very unwelcome known side effects. Sigh.
It turns out that, because of this supply issue, my local pharmacy (which organises my repeat prescription every two months) can’t access Sinemet at the moment, but they can’t currently access the generic version, co-careldopa, either. I can’t say I wasn’t a little alarmed by this to start with, but the pharmacist helpfully suggested I ask my GP for an alternative drug. Easy as that – job’s a good’un. Who knew it was as simple as switching? Double sigh.
Cue a lot of to-ing and fro-ing from the pharmacy to the GP, to a different pharmacy to the GP, trying to get hold of the generic, in the rain, with a UC flare-up to deal with, not to mention the ‘looks’ I get at the new pharmacy; why would she want co-careldopa? That’s how I’m made to feel, or how I perceive I’m being looked at. It feels uncomfortable; like I’m being a nuisance. Like I don’t deserve the drugs I so very much need. I wonder whether an older person, or someone displaying more symptoms than me in that moment, would have been treated in the same way: go here, there, try there then come back, doesn’t matter about the downpour. I don’t want special treatment; don’t get me wrong. A reassuring smile wouldn’t go amiss, though. My left hand shakes as I sign for the drugs. I wonder if they’ve guessed yet. I’ve got an annual pre-paid prescription, which has been a lifesaver lately. I’m definitely getting my money’s worth this year.
I get home to find a hospital letter telling me to book and see my neurologist, and that if I don’t do so within two weeks I’ll be referred back to my GP. I immediately ring the appointments team, and after about 10 minutes on hold I am firmly scolded, like a naughty child, for not calling up to book in April, and that if I had needed a reminder I should have asked for one. Obviously. I don’t mention the fact that I had other things on my mind back in April, like my husband being diagnosed with cancer and that. For some reason, booking an appointment just wasn’t top of mind. After I hang up, I wonder what the reaction would have been at the other end of the line if my once-quick mind could have expressed what it wanted to in the form of an intelligent retort, instead of stumbling over an apology and taking an appointment for October. I’m always saying ‘sorry’ these days.
Anyway, I know I’ve been grumbling quite a lot lately; to be honest, it’s been one thing after another. But I’ll leave you with some really amazing news: my husband’s cancer I just reminded you of? It’s only bloody well gone. Yes, all clear, already. Crazy, clever world. Diagnosed and surgery in April, chemo in June, cured in July. Ten years of monitoring ahead. We’re thrilled and relieved, exhausted and grateful.
A word that I admittedly struggle with at a personal level, but how glad I am that it exists, because he heard it, and it’s real, and that makes my heart happy. For his sake, for the kids’, and for my own.
I was diagnosed with inflammatory bowel disease in 2014 – the year after my Parkinson’s diagnosis. I was 30, pregnant with my first child, and really quite ill; I had lost a lot of weight, was permanently grey-faced, and couldn’t keep any food down (or up) for months. The meds I was trying to get right for my PD were not going through my system properly (likewise for anything I ate), so I generally felt very unwell and tired. It turned out that some of my test results had been mislaid at the hospital, and it was only months later when my midwife eventually found them – my inflammatory markers off the scale – that I was fast-tracked to get the care I needed. Put ‘baby’ in the equation and things certainly seem to get done more quickly, in my experience, at least.
After my son was born, I began feeling much better. I switched Parkinson’s meds, and they seemed to be better absorbed, but once the flare subsided I didn’t continue with the meds I was recommended for my gastrointestinal suffering. I suppose I was still coming to terms with my PD diagnosis, and didn’t have the time or energy for this new illness. I did consistently attend appointments with my IBD consultant, though, who humoured me in the same denial-based conversation I always had, and sometimes still have, with my Parkinson’s consultant, assuring me that yes, it was definitely colitis and yes, it would definitely eventually flare again.
And it did, twice – in summer 2016 and in autumn 2017, always over a year in between relapses. And now it’s flared again, for the first time in nearly two years. And I had really forgotten how shit it is (forgive the pun). It can be triggered by certain foodstuffs, which could be the case this time round, or it could be a delayed stress reaction given everything that’s happened over the past few months. When I saw the nurse only a couple of months ago, I was on the brink of being referred out of the hospital system, but on mentioning that my stomach felt unsettled, I suppose I did have a feeling something was brewing. It still nearly always comes out of the blue, though. It creeps up on you, then relentlessly prods you, stopping you from functioning properly.
I can’t begin to tell you how painful, unpleasant and embarrassing IBD is. I don’t talk about it much because in honesty, it doesn’t affect me on a daily basis, as I’ve always had a good length of time in-between flare-ups. But it’s something that needs to be talked about. It’s another little understood condition, especially by those who don’t have it or don’t know anyone who is unfortunate to be suffering from it. Crohn’s is particularly nasty, but UC can also be serious, and, similarly to Parkinson’s, there is no cure for it. If you’ve got it, that’s it – yours for life. Such luck! I do sometimes wonder if my two chronic cureless health conditions are linked in some way, or whether I even got the right diagnosis/diagnoses. I think this is something I’ll never stop quietly questioning, even though perhaps I’ve just never fully come to terms with my conditions. I’m not sure I ever will, even though I’ve accepted them, as contradictory as that may sound.
Today I’m grateful for my lovely IBD nurse, who I emailed this afternoon and has responded even though it’s a Sunday of all days, and has booked me into her clinic this week. What a difference it makes to know someone is there to help. I have some drugs I can take in the interim (from my 2017 flare but with a 2020 expiry, phew) which will hopefully help. If you look at the size of the tablets, you might understand why I hate taking them. At least with the PD drugs I can swallow them on the go, even without water. Right now, though, I need to feel well, for my own and my family’s sake. When it flares, my IBD is more debilitating than my PD, even for a brief period – but the gaps between flares are likely to get shorter over time. And I think it’s about time I started accepting this for what it is and taking the drugs I’m told to. What’s another handful of tablets a day to remember, anyway?
Today we woke up to the joyous realisation that Little Girl’s last suspicious-looking chicken pox blister was no more, and so – after a long-overdue Body Combat class on my part – we hopped in the car and started driving, Googling where to go as we left. We ended up visiting Clandon Park near Guildford; a National Trust-run stately home that was devastated by fire in 2015. The mansion is surrounded by scaffolding and, provided you agree to wear a chic hard hat and hi vis combo, you can enter part of the house and take a look at what’s left and the extent of the work to be done in what I believe is a 30 million pound rebuild. Crazy. We usually stick to walking around the gardens at National Trust places, this being the slightly less hazardous option when you’ve a 4- and a 2-year-old in tow (especially a 2-year-old who hasn’t been out for a fortnight). However, the simple mention of ‘giant Lego in the basement’ was enough to get the kids on board here; in we went, Little Girl singing Bob the Builder, C shouting about the aforementioned Lego and where we would find it.
We bought our National Trust membership around Easter time with the intention of using it when meeting up with friends en route to visit my parents in Northumberland, where we would have a long-deserved break, as well as, obviously, whilst up there and back in Surrey. Of course, that trip was cancelled when Tom was told completely out of the blue that he had cancer and had to have surgery almost immediately.
It’s been a stressful few months since. Tom has had chemo, and whilst he has recovered well physically, the mental toll of what he has been through in such a short space of time has been heavy on him as well as, to some extent, me. This has definitely been compounded by both kids having chicken pox one after the other, but they have finally recovered after a truly awful few weeks of being stuck in our tiny sauna of a house, with me rapidly running out of things to entertain them with and trying not to spontaneously combust.
My PD has been the last of my worries, but at the same time I didn’t need much of an excuse to let my exercise regime slip, mainly due to being stuck indoors with either one of the crazies for weeks on end. What I’ve come to realise during the past couple of months is that whilst I cannot always control my PD symptoms, even with drugs, I can control what exercise I’m doing and what I’m fuelling my body with, so I’m now making some positive changes in both respects: upping the exercise and watching what I eat.
In better news, Tom’s white blood cells are looking good after the chemo, both kids will be back at nursery this week (I do love them, but I also love my sanity), and we can finally start to clear our minds and look forward to some exciting upcoming events: our son starting school in September, for example. Our trip up north is also finally being re-scheduled for August, which means we’ll get some time and space away together as a family, and to see my parents and some good friends, which makes me very happy.