MS NEARLY BROKE ME: NOW I'M BACK . . .
GUEST BLOG: DEAN REILLY, EDINBURGH, SCOTLAND
Let me introduce myself. My name is Dean Reilly, I'm 33 I'm from Edinburgh and I have MS, now isn't that some introduction? Can you imagine Cilla Blacks face on blind date after that intro?
Anyway, I've been asked by Conor to share with you an insight into living with MS. I might not be the best example of someone living with MS, but I doubt you will find anyone as honest and as open about fighting back against the condition, so here goes and I hope you enjoy the journey.
I started in a blaze of glory - I got my letter which read Dear Dean, you have MS, see you in six months all the best.....
You bastard! I thought to myself, no I'm not having this, I'm not taking this! No chance! Fuck you MS, you're getting it!
I remember the day very well….. it was a Wednesday and I went straight online and looked for the first challenge or run that I could find. The next Saturday without even running the length of myself previously, I signed up and completed the great Edinburgh 10k run.
After the run I felt so proud! MS isn't going to stop me! It's going to motivate me….and I'm going to batter MS.
I went onto to complete a triathlon, the full Edinburgh marathon and a race called the mighty deerstalker. These were all great events, fantastic memories and moments in my life that will remain with me forever. I couldn't have ever predicted just how emotional completing the marathon was. Joy, pain, heartbreak…. it had it all. The memories I have of that day will live with me forever, no matter what happens to me in life no one can take that away from me. I had completed my first ever marathon and it was in my home city…. simply amazing!
So however well it may have seemed I was doing, fighting against the physical symptoms of MS, one of the biggest issues people with MS face is depression. Depression was something that I didn't believe in….. how silly of me was that?
So from the outside looking in I seemed to be perfectly happy and doing great. Via social media I had evolved into Mr MS and was seemingly unstoppable. That's the problem with perceptions. Most of the time they are wrong. With me that was definitely the case.
My mood swings were horrific. I could be perfectly calm one minute then the next act like the world has wronged me and I was the biggest victim in the entire universe, or worse become the most horrible and aggressive man ever. Proper Jekyll and Hyde moments. Though at times I felt entitled to feel the way I did.
I felt persecuted against, picked on and treated badly. The moods swings cost me a career at a great company, a relationship and even cost me some friendships too. Some things you just can't go back and fix, and this has been one of the hardest lessons for me to learn.
The first symptoms I started to notice after my diagnosis was the need to rush to the bathroom at a moments notice. A bit annoying but nothing to complain about I'd tell myself. After I completed the marathon I just found the motivation for anything just disappeared. I didn't want to do anything. I'd deliberately pick fights with my girlfriend at the time for no reason other than I was angry and wanted to get rid of the feelings I was harbouring. It's incredible how feeling vulnerable can actually make you act so aggressive and domineering. Not great at all.
One aspect that was difficult to deal with was the fact that I found no joy in anything. The events, the future, my family…. nothing made me happy. Nothing lifted how I was feeling at that time. Everyone thought I was doing great and telling me how much they admired me but all I wanted to do was jump off a bridge. I never understood when people would say you might well be the life and soul of the party but inside you're the loneliest man in the room. Never got it …..but I do now.
So I moved on to a new job and just when I was starting to feel I was going somewhere MS raised his head to put me in my place.
Fatigue took over my life and brought me to my knees. I'd be so tired I'd fall asleep anywhere…. on the bus, train, absolutely anywhere. Now if that wasn't bad enough to deal with I started to loose control of my bladder. Standing waiting on the bus to work and I felt my legs getting wet. I’d look down to see I'd wet myself. You have no idea how soul destroying that moment was.
I've just done the marathon, I feel so powerful, like proper Superman feelings but then here I am….I can't even get a bus to work because I've pissed myself.
Now don't get me wrong, I know there is a joke or two in there with that but genuinely it broke me. People talk about moments that change your life and well this was definitely one of them.
I remember someone who was very close to me at the time said so why don't you just wear a nappy and just get on with it? Perhaps looking back with hindsight I can try and give them the benefit of the doubt and say ok, well maybe they were just trying to help with a practical solution, just maybe. However ultimately with something like this it's the mental side of the situation which causes the most problematic issues for people and in most cases that is what people just don't seem able to understand. If they can't see it they can't believe it.
At this time I felt like I could not go on. What's the point trying to hold down a job, trying to have a relationship…..there is no point, I'm fucked with MS, there is no point. Now I'm sure this might sound dramatic but sometimes you can't see the woods for the trees and this was certainly happening to me at that time. Did it get better? Not straight away it didn't, in fact things got a lot worse.
As I mentioned earlier the mood swings were something that were having a disastrous effect on my life. I started lashing out…. not just verbally but also violently and slowly the feelings started creeping up on me that fighting MS wasn't something I wished to do any longer.
I started to receive recognition for the awareness I was raising and really this should have been something that I was proud of and took motivation from. Weirdly it had the opposite effect. The greater the compliment or award, the worse my mood become. It was a viscous circle that was only going one way. When people would take the time out of their lives to do something for me or to tell me how well I was doing, I'd feel the most overwhelming sense of guilt. I felt terrible., I felt like a complete waste of space, fed up with life and I’d had enough of trying and yet here is someone telling me I'm a legend, I'm inspirational? You’re kidding me on? I just couldn't get my head around it.
Without going into much detail, I faced a difficult and challenging situation. In truth things couldn't have gone any worse for me, I believed my life was going in a certain direction with changes and preparations underway but without any choice I was now going to have to completely change my direction in life. At that very moment, every emotion I had felt over the previous year or so came to the forefront of my mind….. hurt, despair, anger, bitterness and then just absolute rage!
I was like a coiled spring that had just been let go. I was literally on a rampage. My world turned upside down and now I was going to make someone feel the force of the pain I was going through. This then resulted in an altercation with two other men which culminated in me being taken to The Royal Edinburgh psychiatric hospital.
I felt ashamed. I felt stupid. I just couldn't believe my life had come to this point. I was sitting in a hospital that was disgusting, the most terrifying environment you could ever imagine. It was a horrible place to be….. the place was stinking, proper stereotypical crazy hospital stuff.
For instance, I got up to go and get a drink and when I came back to my bed someone had peed on my bed. I just stood there and thought is this really happening? I got the nurse through and told her what had happened. It was then that I uttered the magic words, "Look I'm not mental, I don't pish the bed. Someone has done it deliberately!” The nurse replied “Ok Dean let's have a look at your notes here, ah right feelings of persecution and instances of incontinence? Ah right ok Dean, so will we get you new sheets and this won't happen again, Will it Dean?” I was speechless. It honestly wasn't me but I couldn't have been more of a suspect if I tried.
Guess what though? Yup it happened another twice. You just couldn't make that stuff up! As annoyed as I felt, I had to sit down and pinch myself. Is this actually real? This morning I was working towards a really positive future, with everything that anyone could have hoped for, and now I'm actually sitting here in a hospital ward where someone seems to enjoying peeing on my bed, wow! Talk about rough days!
So here I was with people telling me they were the reincarnation of Michael Jackson, or their plan to end world poverty (which was dead simple….he told me he had already spoken to David Beckham and President Obama, and they are all in agreement they were going to ban money). I mean for fucks sake, this wasn't how my day or my life was meant to be going.
So it came to bed time. Obviously I've got one eye open for the guy that liked peeing my bed, also making sure Becks and Obama's mate wasn't floating around either and the next minute this wee old guy pokes his head out from under my bed and says “Alright mate, if they come I'll give you a shout”I said “Who's coming?” and he replied “The demons, they always take the person in this bed.”
So at this point I thought to myself should I drag this weirdo from out under my bead and throw him away or should I get up and tell the nurses? To be honest I was so emotionally and physically exhausted I just said “Cheers pal…..if you keep me safe I'll buy you a pizza tomorrow for your tea!”He was delighted.
The following morning and I woke up thankfully no demons had come to get me. Perhaps it couldn't carry me as they were working solo. I'm easily a two demon job just for bulk alone! Anyway I remembered that I had agreed to meet the head of fundraising at the MS Society for Scotland at their offices in Ratho. To be honest I thought how can I cancel…. it's the head of fundraising for Scotland for the biggest MS charity, but how was I going to get to go. At the time I was ashamed of where I was and what I was going through so I hadn't told anyone where I was. I then had to phone my Mum to come and collect me directly from the ward in the hospital as I wasn't allowed out. We actually had to pretend it was an appointment relating to my MS treatment!
Here I am in a psychiatric hospital and I was getting signed out of hospital to have a meeting, to discuss joint fundraising and some of the challenges I will be doing in the future. Talk about crazy! How on earth was I going to manage this?
So I went out to meet with the guys at the MS Society, posed for photos and talked about the things I was up to at the time, what I'd done previously and what I was doing in the future. Afterwards I thought to myself how did I just manage that? I'm in the loony bin and I just walked out the door andhad given such a good impression of myself that I got an email later that day telling me I was inspirational and how great I was.
I couldn't get my head around it! I felt nothing for myself. I didn't want to wake up in the mornings yet people could say these amazing things to me and it made not one bit of a difference to me. Contrary to what some might think I wasn't doing this for self attention I was trying my best to help increase awareness of MS and also hopefully help others that were also fighting the condition.
I remained in hospital for about 12 days and I received treatment for depression and anger management. Throughout all of this if you had looked my Facebook or Twitter you'd think I was on top of the world. I was in the final of the Pride of Edinburgh, chosen to carry the queens baton and also a finalist in STV’s Finding Scotland's Real Heroes Awards. This was in no small part to my friend Philip Briscoe, he has been an unbelievable support to me.
Not showing off, but I did know how lucky a guy I was at those times, I had a fantastic girlfriend,great friends and a great family. So much to be happy about and be grateful for, but none of it made me happy in the slightest. In fact the guilt I felt because of how I was feeling made me feel even worse. I was in a lonely place and nothing seemed to be helping.
After a week or so out of hospital things were not improving. I went out during the night and I tried to take my own life. This is the first time I've spoken about this and to some of my friends and family it will come as a total shock. I'm not asking for sympathy nor do I want any. This was something that was a very conscious decision and not something done on the spur of the moment. It was planned, thought through and I had even written all the things I wanted to say to the people that mattered. I had done everything right. Ultimately though I failed.
It’s a very surreal feeling when you decide you've had enough. In a weird way you do feel a calm release come over you. However I failed in my attempt. Was I relieved? No, in fact it felt horrific. Imagine feeling so useless, so worthless that you decide to kill yourself and you fail! I mean seriously! Saved because I was too useless to do the job properly. It was soul destroying.
I stayed in bed all day the next day. Was I happy to be alive? No. I was ashamed and emotionally destroyed. At this point the doctors decided that I needed to go back to hospital. I remained in hospital for about 9 or 10 weeks. This attempt wasn't a cry for help. It was me giving into what my head had been telling me for ages. Dean you're fucked, you have MS. You cant be a husband because you won't be able to look after your wife, you can't be a father as you wont be able to work to be able to provide for your kids, so what's the point? Why try and fight this? Why put myself through physical hell, when at the end of the day what you are going to end up like isn't even worth fighting for?
Now I'm not saying this for effect. It isn't about getting sympathy. It's about giving people an understanding of what was real to me at these moments. There might well be people now that are in the same place mentally as I was at that time. For them looking at my life from the outside, it might have looked brilliant but in reality it was so far from it.
Looking back, I had beautiful girlfriend, was working in a great environment that supported what I was doing with the challenges but in reality my life was a train wreck. Fast forward to now the outlook was very different. It had gone very bleak – 33 years old, newly single, living at my parent’s house and got MS. With new symptoms rising against me, I struggled to find something positive worth fighting for.
After my suicide attempt I then spent the next 10 weeks in hospital in Edinburgh during which MS decided to give me a wee nudge to let me know it hadn't gone anywhere. I developed numbness from the waist down. Walking was almost impossible and I had to actually learn how to walk again….imagine Bambi on ice and you're getting close.
By changing and adapting the way I tried to walk it then caused more problems. Unbearable pain in my hip joints. I guess some people could forgive me and let me off with walking but for me I guess it gave me something to focus on, something physical to fight, something that annoyed me enough to get my back up and fight back against MS!
I have now been out of the hospital for about 4 weeks. Do I feel fixed? Happy? Optimistic? Nope.Truth is I still feel like I'd like to die most of the time but I choose not to act on these impulses. It's hard to tell your thoughts they are wrong but they are wrong.
As low and as terrible as I feel I know for a fact there are people far worse off than me. I take for granted the fact that I've got friends that have given me their time, some to train me, support me, be there for me. Overall I am a very lucky man. I do feel guilty and I can see how much worse off others are and how fortunate I am in so many aspects of my life but it's so difficult for that realisation to have any impact on your mental health.
Many reports say there is a high suicide rate with people living with MS. Now I can understand why. My hope is that the people out there see what I was doing and don't think “oh he's Mr MS, its alright for him. He's got all his famous pals helping him.” Yeah, to a certain extent I do have famous friends that give me help and support.
Looking back I had everything in my lap and either gave it away or drove it away. I wanted to die but I didn't.
So as I face the future now is the time for me to show real bravery, to have the courage to tell my story….. not the Facebook and Twitter story but the real story. The story of how MS is a bastard of a condition, no matter what the consultants tell you, it's brutal. Manageable? Well perhaps, but it's still brutal. It is capable of destroying anyone, not just physically but mentally. It almost had me. It came so very close but it didn't beat me, and it won't beat me.
I would like to say to anyone feeling similar to how I felt and feel, you are not alone. We all have the same fears, the same worries, the same heartbreak. Individually we can be vulnerable but together we can find strength. Through sharing experiences, fears, hopes and dreams we can defeat the mental ill health associated with MS. We can take strength from each other's victories and unite together for support and understanding during loses.
I have now gone back to the beginning of my journey. I have my passion back! I have my determination and desire to achieve back, though I have hurt and I have fallen, I now stand taller and stronger for I have learnt so much over the last 18 months that it has undoubtably changed me as a person. But I will use what I have learnt to make sure I do not make the same mistakes again.
I have decided to kick off my return to events with the very challenging Inverness Marathon. It's a huge challenge, but on the 30th of September at the RBS finding Scotland's Real Heroes Awards Ceremony, I hope to be able to announce what I have planned for next year. Next year will be the year I make history and create a legacy that I will be able to look back on with pride. I hope you will all follow me in the next 12 months. It might at times be boring, but I can guarantee I will be real and honest and hopefully anyone out there fighting their own battles can take encouragement or strength from my fights.
It's time to take my life back. I almost made myself history, but instead now I will create history!
Dear MS I'm back and this time it's personal..... you're getting it!
Dean is a guy i came across on twitter in 2013. You will not read a more honest blog than this account and what i take from this is many things, but what stands tall is Deans determination, passion and will to keep going and getting his body back to where it was before diagnosis through healing and recovery. I think with the right plan, discipline and belief, Dean can do it. #AttitudeIsEverything