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 memory is truly awful! 😜)
I have been attending the CRESTA clinic since the start of last year and have found it extremely beneficial. I have been seeing Kate (Occupational Therapist) to support with my getting back to work, which has been a huge help, support and a wealth of hints and tips that I have built into my daily life, as well as her providing guidance to my GP and my employers to support me in this process. Vicky (Physiotherapist) has been amazing. I have attended 2 courses of her excercise class, this has enabled me to stregthen my muscles, stop doing things which were bad for me, and also meet some great people in the classes, share stories of how we are all coping, and support each other in our progress upwaqrds, as well as blips which can often send you spiraling (or is that just me?).
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. Kate and Vicky's help with this has been vital to my physical and mental well being in manging being off sick from work, as well as attempting to return and working part time hours. I am still slowly building this up to hopefully be back to full time soon.
Previously to attending CRESTA I was managing with a highly supportive GP practice as well as seeing my consultants regularly, but I was feeling as if I was getting no where in terms of managing my condition on a day to day basis, and learning to accept the things that I am unable to do anymore. The accepting part is the bit that I have been struggling the most with. Although I have been struggling with this condition since my teens I have always managed to do the things that I wanted to through pacing myself and being a ridiculously planned person. These days this is not possible. I can't go to dance classes anymore which is a huge thing for me as I have been dancing since I was very young. I am aiming to be able to go swimming again by the end of the year and Vicky is helping me towards that goal with the exercise classes being the first step. I now complete the exercises myself at home and am progressing slowly with my strength and stamina. The next step for me will be to go to a pool and just walk in the water. Each new step is terrifying, and I have to find a friend to go with me incase this totally wipes me out and I can't even get out of the pool!! (The joys of the things you need to think about when dealing with chronic fatigue!!)
In terms of accepting the limitations of what I can do now I wrote this at the start of the year to guide and focus myself through any bad times.
My philosophy is that Happiness is the only goal!
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? And what do I do then?
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. Oh... I also have a lovely set of matching towels 😊
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.