This ia a post that I put onto the website for the group I volunteer with for my clinic at the hospital I attend.
Hi, my name is Victoria and I am one of the health champions.
I volunteered as I wanted to give something back to this amazing clinic, as well as seeing if I can help others in similar situations to myself. I have PBC and struggle with what has recently become severe pain, as well as chronic fatigue. I have been diagnosed for 7 years, but have had chronic fatigue since I was 14 so I don’t really remember feeling well. My condition has been getting worse over the last few years and recently I have had to take a lot of time off work and change my role due to only being able to work part time at the minute. I am interested in getting some kind of support group set up for people to discuss how they manage their lives, balancing all of the things that we all have to fit in, looking after ourselves physically and mentally. I am hoping to share best practice, hints and tip of things that work and truly have a positive experience of supporting each other in navigating a balance in life.
I have been struggling to stay positive these past few months. I haven’t been feeling “why me” just a bit sorry for myself and sad for the things that I might not be able to have in the future. I worry that I’ll never meet a long term partner, never get married and have kids, and even if I do, will I be able to look after my kids? Will I be able to give them the lives that I want to? Taking them out, playing games, taking them to the park and running around with them, or would I be the mum who looks on from the sidelines, unable to join in? Would I be the mum in the wheelchair, or the one who has to go for naps everyday? I do not want to be someone that my family has to look after, so do I resign myself to being alone? To being a fantastic auntie? Do I give up on finding a partner so that I don’t have to drag someone else into my life? Will I be able to work full time? Can I afford to look after myself on part time work? Then how long will that last?
I really don’t know the answers to those questions yet. I don’t know if I’ll ever find the answers to many of those questions as my health is so unpredictable, but I do know that I want to believe that I will be able to have everything that I want in my life, and if that looks a bit different to what I would ideally like it to be, then so be it! Life very rarely works out exactly how people want it to, things happen, plans change, partners change and life sometimes just kind of happens to you.
I have decided that I am going to direct my life as much as I can. Looking after myself, eating well, exercising as much as I can, spending time with family and friends, having holidays when I can, working as much as I can, planning for the future as much as I can. The key phrase here is “as much as I can” I am also going to try and just let life happen to me, to see how things go, to try and relax about health downturns and celebrate the up turns, to relish every good thing in my life and find the joy in the small things every single day.
For the last year I have been keeping a “happy” diary, I record all of the things that make me happy every day. This makes me focus on the good things, remember the little things, and let’s me look back and realise how good my life is whenever I am feeling a little bit down. I am going to find a lovely book and continue this habit into 2015 as it makes me happy. Happiness is what I am striving for. Yes I would love my own house, nice furniture, a matching set of towels, nice clothes and jewellery, a fancier car, but I am fully aware that these things are not important. I am very lucky. I have a condition which is not terminal, it is merely limiting. I have a large circle of friends and family who I can ring up and cry at, or ask them to come over with food for me, or take me out for lunch, or drive me to doctors appointments.
I am loved, I am needed and wanted in people’s lives. I am important. And ultimately I am happy.
Since writing this at the start of the year I have met someone who is starting to look like a permanent partner, who is understanding and supportive of my condition and encourages me to look after myself. This is amazing and scary at the same time but I am trying to embrace it. I also have a lovely set of matching towels 😊