This is going to be personal. Maybe too personal to post, but lets see how we go. Sorry in advance Danny.
For years I would really bug Danny, day to day of course, but also because I never really posted anything about our family life or relationship. The thing is, I was busy, super busy in fact – I was busy pretending my husband wasn’t terminally ill and disappearing in front of me. If I allowed everyone to pry and ask questions, and even feel sorry for us, then that’s basically accepting its really happening. And that’s very, very scary.
Not that this post was meant to be about me, but last year I really struggled mentally for a few reasons. Firstly, because one week into the year of 2023 Danny announced he thought this was the year he was going to die. I pretty much thought about that every day for a year, continuingly filling with dread and anxiety, so I cannot even begin to tell you how pleased I was to say ‘I told you so’ on the 1st of 2024. Couldn’t go too early with that, just in case I jinxed it. Secondly, I was to turn 30. Everyone would say it’s no big deal, only a number etc etc, but I was busy (again) absolutely sh*tting myself that I was going to be widowed imminently, and what on earth would I do and this year is absolutely TERRIBLE.
However, it’s 2024 now, Danny is still alive, and I am 30. I think because I was so stressed about turning 30, that now I actually am 30 I feel a sense of relief and almost freedom because I’m like, woohoo, I’m a grown up now and I can do and say what I want. Not that I couldn’t before, but I just couldn’t process everything.
So, now I’m free of the tricks my minds been playing on me, I can tell everyone about how f***ing horrendous Motor Neurone Disease is. And how we deal with it every day. And how it has such a detrimental effect on us.
There is such a huge amount to unpack here, I’m not really sure where to start. Danny has been my whole world for 7 years now; he’s my partner in crime, my best friend, and my husband. Gosh, I’m crying already! I’ve just been sat here thinking about the highs and lows over the years, we have so many memories. I think I’m going to break this down into a few snippets of life in the Fudge-Harman household.
A chicken korma + a fractured skull.
The occupational therapists would have absolute kittens when they would see how Danny and I moved around. I would have to stand behind him and walk with him almost like we were strapped together in order to hold him up. Danny was absolutely determined not to go into a wheelchair, because it’s the old saying ‘if you don’t use it, you’ll lose it’ – which is quite right, and I was of the same mind set, I didn’t want him to disappear quicker! Until one Friday night, four weeks after our wedding, and one hour after a homemade chicken korma, we absolutely stacked it. Danny had what’s known as footdrop which basically meant his muscles were wasting away so he physically couldn’t lift his feet. (There is an argument to say, at this point, I should have potentially removed the rugs from the flat. But honestly, they were just such nice rugs.) So, of course, his foot got caught on the rug. Honestly, this was the first time I thought he was dead. His head hit that concrete floor so hard, I will never forget the sound. He was completely unconscious, and unresponsive. My stepson, DJ, came running out of his room and grabbed my phone to call the ambulance. I must say at this point, between DJ and I, we are absolutely brilliant in an emergency, cool as cucumbers and did not panic. Danny was still totally out for the count and pale, with blood trickling out of his forehead. The paramedics arrived, super quickly as they always do, and Danny came round and started being sick. Enter the chicken korma. Which I can tell you with conviction, I will never cook again. At the hospital they did some X-Rays and announced he had a fractured skull and pretty much said there’s nothing we can do so you might as well go home. This was the beginning of our wheelchair career; Danny felt horrific on so many levels and definitely could not stand, let alone walk. So there I was, outside of Poole hospital, trying to bundle a 6 foot 1 guy with MND and a fractured skull into my car, on my own. What was great (sarcasm) at this point, was they didn’t pack us off with any anti sickness drugs, or give Danny any before we left. Which meant more puking. This time in an underground car park where we lived. I was absolutely sh*tting myself that he was going to choke and I wasn’t going to be able to call an ambulance because I had no signal. In the end I just had to embracing the puking, wheel him into the lift, into out flat and straight into the bathroom. I couldn’t pull his T-shirt over his head because of the broken skull situation, so I had to cut the sick smothered t-shirt off with my kitchen scissors. It was his favourite t-shirt, and even given the circumstances, he was not happy about the cutting of it. For the next four weeks, he couldn’t stand up or move, and had to stay in a dark room. I would lay next to him and actually count to 15 minutes whilst listening to his breathing; once the 15 minutes had past I could rest knowing they weren’t going to reappear and Danny would be in slightly less pain. It was really awful, and we didn’t have any carers at this point. But one day, after weeks of not eating, Danny woke up and announced he would like a KFC…. so I ordered one, and we ate it in bed. I know, gross. But, to be honest with you, I was so thrilled he was clearly feeling better, he could have anything he wanted! So we ate KFC in the dark, whilst watching Nigella At My Table and we were happy.Maverick Impersonator.
So with MND, eventually you won’t be able to breath without a life support machine. This is because your diaphragm muscle becomes so weak. One of the main signs that your breathing is going down hill is waking up with a headache, because of the retention of carbon dioxide in the lungs. The doctors were putting some serious pressure on us for years to go to the respiratory ward at Southampton, but as always, we knew best, and as far as we were concerned, no morning headaches, means no problemos. Gosh, how wrong we were. We finally caved in, and accepted the appointment, it was the 22nd December 2020. I remember it like it was yesterday, because the consultant came into the room with Danny’s results, and said ‘yeah, you’re not going anywhere’ – his bloods were so so bad. They couldn’t work out how there hadn’t been an emergency! Like, he shouldn’t have survived the nights! We were so shocked, I cried, and Danny just looked blank. We had nothing with us, so I got Danny settled in the room they gave us and then raced home to get all of our stuff. I managed to go Southampton, Poole, pack stuff, shower, back to Southampton within an hour, which I think is very impressive, definitely dangerous, but at this point I’d just been told Danny would be on a ventilator for the rest of his life, so my head wasn’t really on the button in terms of speed limits. I got back, with lots of snacks, and we snuggled up on the horrendous single hospital beds, managed to laughed together and chatted about anything but MND. He was so brave. I was so proud of him for being such a trooper. We got through it together. Nowadays, he has his ventilator on about 22 hours a day. It makes me really sad because I just wanted to be able to give him a kiss and have a chat, just about husband and wife stuff, you know? Nothing major, just a chat with my partner in crime. He really struggles with his speach now, the MND has affected his tongue, voice box and throat so he can be tricky to understand sometimes. If he’s got his laptop in front of him, he will write out what he wants to say and it plays in the voice he recorded a few years ago. Although I think he must have pretended he was quite well spoken during the recording. Very much the queens English. Danny is so clever, charismatic and funny, it’s f***ing evil that the MND stops him from communicating. I just want to know what he’s thinking all the time, I must do his head in trying to ask questions that he can’t answer. It’s also super isolating for him, he just doesn’t want to be in situations where he has to talk to people which makes socialising really difficult and anxiety enducing. He still does it though, he’s super strong when he wants to be.
Potentially, Lewis Hamilton gave Danny a chest infection. But cannot be confirmed.
We had an incredible day at Silverstone in 2022 – like honestly, amazing, we actually managed to get Danny into his friends Ferrari, along with the wheelchair in the back; I’m not saying the Ferrari FF is wheelchair accessible, but it’s worth considering.
We were in the Mercedes’s pits with Lewis Hamilton and George Russell which was unreal, the noise, the people, it was amazing. Lewis, his team and his father were all so attentive with Danny, made sure he was ok on a few occasions which was really lovely. I actually sat in Lewis Hamilton’s seat. Amazing. Danny had an wonderful day, he smiled so much, he was so happy! I asked him when we got home if that gave him more confidence to get out and about and he said yes! I thought ‘brilliant!! Where next?!’ However, a few days later Danny started feeling really rough. We went to a performance my stepdaughter Poppy was doing at school, and the whole time I was looking at Danny thinking F**k, this is not good. A huge percentage of people with MND die from chest infections or phneumonia because their body and lungs are just too weak to handle it. So, when Danny was coughing and sweaty, I had huge alarm bells going off. We get back, and I get the cough assist machine out; this is a horrific machine, which pushes air into your lungs and then pulls it out super quick to emulate a coughing action and therefore pull out any mucus that might be lurking. I’m not great with mucus as it happens. And the machine makes Danny gag, so we’re both gagging all over the place, and making horrendous sounds, and the dog is just sat staring thinking WTF are you guys doing?! So I get Danny into bed, he’s knackered so goes straight to sleep. Until about 4am, when I’m woken up to him sort of screaming I would say. I couldn’t working out what he was saying because obviously he has his life support mask on, but he was very stressed, all I could see was true fear in his eyes which I will never, ever unsee, it makes me feel sick thinking about this actually. I managed to get him in his wheelchair, and wheeled him outside, he started saying ‘panic, panic’ with his eyes bulging, I was on the phone to the ambulance at this point, I was absolutely petrified, there was nothing I could do to help him, stood in our garden at 4am with him having a full on panic attack and he just couldn’t breath. The ambulance arrived, and we were blue lighted off to Poole within minutes. Straight into resuscitation bay 6. Turns out, he had phneumonia, quite severely, and he had a huge amount of fluid and mucus to clear for someone who can’t cough. He was pumped with anti biotics big time, he was so poorly, it was truly frightening. At this point we had no care whatsoever, I was doing everything myself, and at this stage he is pretty much totally paralysed and mega heavy. You might think that if he was in hospital I wouldn’t need to be there, but aside from the fact that I wouldn’t leave him out of fear of him dying, there was no way there would be enough staff there to ensure he was ok, so I just could not leave his side. My darling mum was my hero at this point, she moved into our house, took care of the puppy and was my rock whilst I was busy being Danny’s. Danny decided he had had enough of the hospital after a little while and wanted to go home. I explained it’s literally down to me so it’s quite a tall ask, but nether the less we went home, because Danny does what Danny wants.
Again, I’m bundling him and a wheelchair into my car, this time negotiating with a life support machine that has to be on his face at all times. We get home and Danny is still very unwell, and starts diving into a panic attack again. This is exactly what I didn’t want to happen, it is so frightening because his whole body shakes and all I can see is his eyes. I’m trying to calm him down, I’ve got a cool flannel on his forehead, him holding his hand, trying to breath with him, and he begins to calm down. His breathing slows right down. And then, stops altogether and he turns blue. Eyes closed, blue, totally unresponsive. The ambulance were there in minutes. But I thought it was over. My whole life just came crashing down, I didn’t know where to put myself. Mum was in bits thinking he was gone. She was talking to him whilst the paramedics were throwing tubes around and pumping him with all sorts. She said it’s ok Danny, we love you, but he was still totally unresponsive. I was numb. I had to walk away, I just couldn’t watch. They managed to bring him back round, I could not believe it. There was 5 of them, incredible guys. And Danny was back in the room! Which was brilliant, because I was absolutely gunning to tell him ‘I told you so, it was too early to leave hospital’! The lasting effects of this ordeal were huge, from his breathing to the monumental mental impact on the both of us. I pretty much had a total breakdown. Mum was looking after Danny whilst I went to work because we still had no care at all. We applied for care and they said he wasn’t ill enough – I mean, what more did they want?! He can’t move, breath or eat! A couple of weeks later, Danny had a feeding tube fitted, he has lost so much weight with the illness and not being able to eat or drink, it was quick dangerous really. After that, we applied again for the care package from the NHS and they agreed, due to the feeding tube being a tick box!
Picture for context, lets be honest, it’s not worth screaming about. I had to admit, I did laugh out loud, he was absolutely petrified of him so that was the end of that one and we moved onto the next. The next chap was a cheery guy, exceptionally happy with himself on all fronts, and claimed to be royalty in a foreign country. I didn’t mind him, until I came home, and he was wearing my slippers. I mean??? Sorry, why on earth do you have my slippers on? My chestnut ugg slippers. On your feet. It’s your second shift and you’ve just helped yourself to my uggs. No. Absolutely not. Thanks but no thanks. We gave the agency one more chance, and they sent someone who turned up an hour late and didn’t apologise. It’s almost laughable. So we decided to take things into our own hands and interview and employ carers ourselves. It’s worked really well, we have a fabulous team who look after Danny exceptionally well, and no one dabbles with my footwear.
If you’re still reading this, thank you, I do feel like it’s awfully long but it also feels slightly liberating to get a little bit of our story out there. To be honest, this is the tip of the iceberg, there is so much more to say – I haven’t even told you about the time I was so stressed at Majorca airport I threatened to kill someone, or just the day to day trials and tribulations that come with having and living with MND. Danny along with MND has made me who I am today, I am proud to say I am totally unhinged and irrational, with a exceptionally dark sense of humour. Life can be a total b*tch, but grief is the price you pay for love.