Who Am I Now?

I have always struggled with both physical and mental health problems but in the last two years my physical health has significantly declined. 2016 was a struggle, but I was still able to work in between hospital stays. I was also studying, writing short stories for a collection which was going to be published, working in a job that I loved and going on hiking holidays with my family.

Now I am lucky if I leave the house once a week and doing so leaves me exhausted and sore. I pretty much live on antibiotics and to get through the day. I rely on oxycodone (a strong opioid similar to morphine) as well as countless other medications (40+ tablets per day).

So what got me to this point? I have various conditions, but the straw that broke the camel's back is a condition called Fowler's Syndrome. It is a rare condition that affects young woman, causing an inability to pass urine (urinary retention) amongst other symptoms. For me, it reared its ugly head after I had my gallbladder removed in August 2015. It quite often appears after surgery or childbirth and in some cases can happen spontaneously. I was taught how to self-catheterise (ISC for short), which meant passing a small tube up my urethra into my bladder several times a day to drain away urine. Despite it being very painful, I managed this for a year and a half. But ISC gradually became more difficult and in January 2017 it became impossible. I had a urethral indwelling catheter inserted but this left me bed-bound with agonising pain and an infection which lasted ten weeks before leading to sepsis. By February I wanted to die. My mum was laying next to me trying to comfort me as I was sobbing for I had maxed out my pain killers and I was still in a lot of pain. She called for the out of hours GP and refused to let him leave until he had me admitted. And then she refused to take no for an answer from the urologist who had repeatedly refused to insert a suprapubic catheter (a catheter placed surgically through the abdomen into the bladder as opposed to up the urethra) despite being advised to by the Fowler's specialist uro-gynaecologist that I had recently paid to see privately. I think her actions that night probably saved my life. I still had to wait until March 10 to have the small operation and I subsequently ended up with sepsis due to the infection that I'd had for the ten weeks previous but life, for a while, was a little easier.

I went back to work part-time at the end of March and went on holiday to our favourite spot in the Scottish Highlands in May. But I was still plagued with infections and each infection left me a little more fatigued each time. My Kidney function had also started to drop once more and my chronic pelvic pain began to worsen. However, my thirst for living life to the fullest had been reignited and so, rather foolishly, I ignored many of my symptoms in favour of packing in as full a schedule as possible. By June I had increased my hours to thirty a week. I also got involved in an awareness raising campaign for Fowler's syndrome along with a number of ladies who also had the condition. We made videos, and plastered Facebook with information and we wrote to magazines and newspapers.

I got in contact with Jennifer Reoch, the presenter of STV2's Live at Five program based in Glasgow (we had attended Scottish Space School in 2006 in Houston, Texas together) and she very kindly arranged for myself and my Fowler's friend, Tia, to be interviewed live.

In the week leading up to the interview, I refused to slow down. I worked 35 hours that week. Then ignoring the pain and exhaustion, I spent the weekend with my boyfriend out and about instead of resting. Although worth every minute and effort, the day of the interview was emotionally and physically taxing and by the time I got to work the next day, I felt like I had been hit by a truck.

That was the last day I was able to work. I had a severe crash. My chronic fatigue flared to the point where I couldn't get out of bed and I was in so much pain that I had to be admitted to hospital just for help controlling the pain.

For weeks I kept expecting my energy levels to recover and my pain to go back to what I was used to coping with. But after a couple of months I realised, with my GP's help, that I had a new, significantly lower, baseline. Infections were hitting me harder than ever and I felt that my life was crumbling away beneath my feet again.

I slowly began to accept (and I am still doing so) that some things would need to change. First of all, I had to accept that I couldn't expect to return to work any time soon and I made the heartbreaking decision to leave my job. I needed some way of paying the bills so I started the very stressful process of applying for Personal Independence Payment and Employment and Support Allowance, the two disability benefits that I am entitled to and now receiving.

Things like showering were getting dangerous. I had lost my balance and almost lost consciousness a number of times due to getting dizzy in the shower. And changing position in bed was hard due to the pain caused by turning around or sitting up from lying. And it had been a long time since I had been able to stand long enough in the kitchen to make myself a meal. I reluctantly got in touch with social services and arranged for an occupational health assessment. A few weeks later and I had a bath seat that I could sit on while showering or help me in and out of the bath and grab rails dotted about in helpful places. I was given a lever at the side of my bed to make it easier for me to adjust my position and I had a perch stool in the kitchen. I was also given a commode so that I didn't have to dash to the toilet on the nights where I had severe diarrhea (unfortunately a side effect of the strong antibiotics I am almost constantly on).

At this point my world was very small. Four walls, almost 24/7 because about five minutes on my feet was about all I could manage. I had my car, which allowed me to get to doctor and hospital appointments. But walking about the supermarket or along the high street was no longer doable due to pain and fatigue. This left me in a very difficult position regarding the family get together in Durham, which was planned to celebrate my Dad's 60th birthday. If I didn't go, my Dad and my sister couldn't go because I am the driver of the family. But I knew I wouldn't be able to go on the days out that were being planned. A wheelchair was the obvious solution but each time I thought about it I felt sick. Was it really coming to this? My Dad and Uncle Mick struggled on their feet, my Aunt Karen has two knee replacements, and even my sister has a dodgy ankle. But it would be me in the chair? The thought made me cry many times. But the decision was made and we borrowed a rickety old wheelchair from my Mum's work. At least nobody would know me in Durham.

I felt like a fraud. The wheelchair was quite temperamental and it was often easier for me to stand up while we got it over a high curb or an awkward camber. When I did stand, I felt the need to justify myself to onlookers and would splutter out that I was using the chair because I had pain and fatigue. I hated every minute I spent in the chair, but it meant that I didn't miss out on the time with my family.

It took me a few weeks before I was able to pluck up the courage to use the wheelchair again at home. I still feel like a fraud and that I need to justify myself and I worry constantly about bumping into someone I know. I still debate with myself whether or not to use it on the rare occasions I go out. Thankfully, Naomi is a voice of reason and will remind me that I will only suffer by not using it or that I will need to go back to the car within a few minutes. A few weeks ago, in a spontaneous burst of courage, I even borrowed a mobility scooter so that we could shop a little easier. I did receive stares, more so than I did when I am in the wheelchair. There is definitely a stigma against young people and mobility scooters.

I accepted that I was ill several years ago. But up until the last few months, I had never really considered myself disabled. Up until a few months ago my health did not stop me doing anything an able-bodied person could do. But as I look around my room, with the bedside table covered with a plethora of different medications and at the aids provided by the Occupational Therapist and my huge box of catheter and medical supplies, it's hard to deny that I am disabled.

It has left me questioning who I am now. I suppose while I am coming to terms with the new part of my identity that is disabled and I am also grieving for my life of before. I hope that different options to help deal with Fowler's will make life easier in the future and that I will regain some of my old identity. But I also worry that I will never be able to hike in the highlands again. I wonder if I will ever wake up and not be in pain again. And I wonder if I will ever find the sense of purpose that a good job provides again.

Although the above is always a worry, I can also see how accepting my disability has opened up other doors. I may live mostly in the confines of our little house but I'm living in the age of the internet. I don't have many friends that I physically spend time with these days, but through online communities I have found tremendous support and friends. And experiencing the trials of being disabled for myself has opened my eyes to the issues facing the disabled community. I've always enjoyed work in the charity sector, in fact working in the charity sector was once one of my long term career goals. I like to feel I am making a difference and raising awareness of the struggles disabled people face, advocating for our rights and supporting my disabled friends as they have supported me is something I could find purpose in. I also love writing, and although I find concentrating a lot harder these days, I feel it is something I can devote more time to now. Sat at my computer, my world opens up once more.

I'm still working out who I am now that so much has changed. I would like to say that my disability hasn't changed me at all, but it has. It plays a huge part in my day to day life and as much as I don't want that to be what ultimately defines me, I don't think its impact on me should be trivialised either. Living with the health problems I have is definitely not what I would have chosen for myself, and yes it makes things really hard at times. There are days when I feel like throwing in the towel, but I am positive that it will shape me into a better person and that I will have happy, fulfilling times ahead, just not how I originally planned.

If you are going through a similar journey to acceptance my advice is, don't be afraid to take your time. Don't feel you need to be that brave, inspiration of a person that everyone keeps telling you you are. It's okay to be pissed off at the hand you've been dealt. Its ok if you can't take everything in your stride. You will get there in time and it might very well change who you are in some ways. You may feel like you lose parts of yourself but where you lose you will start growing is new directions.