For a year now I have been looking after my wife as her carer ever since she was diagnosed with EDS and Hyperadrenergic POTs Syndrome. Put in to non-medical jargon these conditions means that my wife’s heart rate and blood pressure can rise exponentially causing her to become extremely unwell. She has also developed severe problems with her upper body and hips which in recent months has meant I have had to start helping her get dressed and brush her hair.
Put simply I am now more or less her arms and legs and understandably that is a full time job. I have worked or been in training ever since I left full time education back in 2005 and so the prospect of having to give that up was daunting to say the least. A million and one questions (more like worries) flooded my mind as I tried to process how this new life would be for me and my family. There are three of us in total – me, my wife and my four year old daughter – and I felt like much of the responsibility of keeping everyone as healthy and as happy as possible fell to me. In fairness my wife helps me with a lot of the administrative side as she has always been better at that than me.
Before all this happened I had been a security guard for eight years working at various construction sites, factories and shopping centres before finally settling in to a Premises Officer role at Newport University. I finally had a stable job but by then I was getting ever closer to the magic age of 30 and I started to wonder about what I really wanted to do with the rest of my life however any major change of profession seemed curtailed by the arrival of our daughter after three years of us trying to get pregnant. Becoming a father made me so happy that I gladly accepted that I would be in a job that my heart wasn’t in if it meant I could provide for her.
Then things changed at the university. A merger with another university threatened my position there and suddenly I was faced with the prospect of having to find work elsewhere but I didn’t want yet another security job. One night my wife and I were talking about it and she asked me what I wanted to do instead and I answered, “I really want to do more medical stuff.”
In my capacity as a Premises Officer I had to take on either a health and safety role or a medical role in addition to my security duties . Finding health and safety an extremely tedious blend of bureaucracy and fascism I opted to go for the medical role and started Community First Responder training with the Welsh Ambulance Service. This covered injuries and illnesses as well as cardiac arrest drills including using the defibrillator and oxygen therapy. I adored every bit of it and I finally found something I was genuinely interested in but more than that the stories of the trainer about working on the ambulances really made me think for the first time that that was what I wanted to do with my life. I wanted to become a Paramedic.
I told my wife this as we contemplated the future now that things had changed at work. The next day I came home and found that she had spent the day researching just how I could do that. She had looked at everything; what I would need to do at college, how we would fund it and how I could then apply to do it. It was financially risky. There was no doubt about that but she was the one coaxing me on reminding me that I would probably be looking for a new job in a year or two anyway and that I would regret it more if I didn’t take my shot.
So I took a deep breath, applied to college to update my education and then nervously told my boss who said to me that if he was ten years younger he would be doing the same thing. Returning to full-time education in 2013 was a strange experience. At first it almost felt like a step back until I realized that it was all for building the future and that was a powerful motivator. Now, I did reasonably well when I was in school but found it hard to motivate myself. Now however I had life experience, a family and a goal – this time I was very motivated and not wanting to brag but I did pretty well while I was there.
Then came the time to apply to university. Statistically, getting on to the Paramedic Sciences course at Bristol University is more difficult than any other course. Of over 1500 applicants for the 2014 intake only 30 were chosen. I was narrowed down to the last 300 and that’s where it came to an end for me. I was told I didn’t have enough extra curricular experience and so somewhat disheartened I found myself wondering what to do next. My wife suggested that I apply to a few private ambulance companies for work where I can build up some experience before trying again and amazingly it worked. I managed to get a position on a patient transport ambulance for a private company based in West Wales.
What I was more or less unaware of at this point however was that my wife was becoming increasingly unwell. As I said the company was based in West Wales and while I did get a lot of work in the Cardiff area which is closer to me living just spitting distance from the Severn Bridge I invariably had to spend a few days down there. I stayed at my parent’s place most weekends since it was closer leaving my wife to look after our daughter. We knew it was a necessary evil if I was going have any chance of getting on to the Paramedic course in 2015. I would speak on the phone to her and she would tell me she wasn’t feeling too good or that her shoulders were hurting and then one morning I got the call from her saying that she had been rushed in to hospital as she had become extremely unwell. I was over two hours away.
Finally she was diagnosed with EDS before later HyperPOTS was added. Even now I struggle to understand exactly what it is and most doctors we see have to research it themselves (which is worrying). We were faced with a decision; either we find some home care for her or I would have to do it which meant leaving work and giving up on my goal of becoming a Paramedic. The only home help we could get would be the odd visit by a mobile carer in the morning and the afternoon which was no good for us because Cathy’s condition can flare at any time and we also had our daughter to look after who was now starting nursery school. There was no choice really. I gave my my notice and settled in to looking after my wife.
Now that first year is over and I am not going to lie it has been tougher than I first thought. I spend my days cleaning, some cooking (under the supervision of my wife), looking after my daughter and generally assisting my wife who has become worse since this time last year. Being a bald man I had to learn the art of brushing hair as she can no longer do it herself when her upper body seizes up. I have to help with medication and monitor her heart rate and blood pressure with a small device that goes on her wrist. Being cooped up together in the house often means we get on each other’s nerves for one reason or another (her taste in music has always been appalling) but its soon forgotten because we do still very much love each other.
What I miss most about going out to work is the feeling of having a part of my life that is just mine. I rarely talked about work when I came home as I always viewed the two as separate entities almost but now that is gone. This in turn led me to joining the committee at the nursery school where my daughter was attending; the first male member they ecery had. Before I knew it was writing the nursery’s newsletter and going in half hour early before home time to help with dishes and packing up which earned me a bottle of red wine at the end of the year – nice. It has also meant that when I get a spare hour or two just to myself I like to work on my website Defence of the Realm which has become an almost form of escapism for me.
Again in fairness my wife has done loads to say thank you including arranging trips to my beloved air museums for me to blow off some steam and my little girl also likes to go trainspotting with me which I have always found relaxing. I have also taken up photography as a hobby which is great if you have poor eyesight.
It’s not easy and is trying both physically and emotionally at times but I would never walk away. As long as she wants this bald, trekkie who likes going plane/trainspotting looking after her then she can keep me.