Two years ago I wrote a blog about the guilt that comes with being a chronically ill mum. There are still ups and downs and guilt does still come and slap me in the face ocassionally, but I have strategies to deal with it now. I also try and remember the words of a counsellor I once saw; guilt is the feeling of being angry with something/one but not being able to express the anger so it turns in on yourself in the form of guilt. I wanted to write a more positive post 2 years on and explore how these roles have evolved and the lessons I have learnt on this tough journey.
I have come a long way in my understanding that this is going to affect me life forever. There were never any guarantees with any of the operations I will and have had. That acceptance in itself is a huge thing to process. There are many issues for all of us to cope with still , but we have to believe that things will eventually improve and become less invasive. To see a little improvement with each operation gives us optimism for the future.
In the title of this blog, I describe myself in my many roles, but I am first and foremost a wife and mother. Depression, brain fog and dealing with guilt about being ill, had dampened my connection with these roles. I went through a long period of feeling that this illness was somehow my fault, which it is not at all, of course. I am now mostly able to fill my head with a positive spin on this and we make a concerted effort to discuss with the boys that the situation we are in is due to my illness; not due to choices I am making. We have developed strategies to support the whole family through this but of course I wish I could just get up every day and be a normal mum!
We are all affected by the constraints of my illness, all the time, but most profoundly when I have a long spell trapped in my bedroom cocoon. Weeks not days, of being barely able to move have taken it’s toll but we’re gradually turning this around by the adjustments we’ve made to our home (discussed in previous post). I am determined to live as normal a life as possible, even if it costs me spoons. We only have one life don’t we? Our new normal has to take into account my illness, but if we wait until I’m well enough; we may never do what we love. If I wait until I have no pain before I engage in discussion with my friends or carers then I will just be lonely. If I wait until I can walk then we may never go out again! Normalising this is hard for us all but my personal grieving period is coming to an end.
I believe that I am a better mother and wife because of this illness. They say everything happens for a reason. Now, the joy of being at home, especially when I make it downstairs, when the children get home from school and my husband gets home from work is thruly the best feeling and I am lucky enough to have that every day. I wouldn’t wish this disease on anybody and it could have easily ripped us apart, but with the investment of time, energy, commitment, often a little mediation, from all of us; I truly believe we are all better people from this experience. Oh boy, it’s tough; but as a team, we are unstoppable!
I have no real desire to go back to teaching, but I still think like a teacher and the future I dream of involves my love of teaching and all the skills I have gained, being combined with my creative business. Teaching isn’t a job, it’s a way of life and I will always be a teacher! Teaching made me confident, it enthralled and excited me and I would never have dreamt that I’d have my own business, especially not whilst being so ill. Selling things I have handmade, fills me with pride and a sense of empowerment and definitely keeps me sane!
I feel lucky to have such a wonderful life. I really have made amazing memories with my husband and children. I have fulfilled my childhood ambition and achieved so much more than I ever expected in my teaching career. I have met so many people that are compassionate, empathetic and loyal, shown in the amazing support network around me and from my new group of friends. I have been lucky to travel to great places and see amazing things and even now, I still see life as an amazing gift. I cannot always feel full of positivity and spoone life is filled with many challenges for all of my family every day, but I have a greater understanding of my path. This life has given me the tools to cope with change and adjustments, whist guiding my family carefully alongside me in this journey. It has made me realise that you cannot wait for things to get better or until you have enough money or until you wake up in the morning. We never know what is around the next corner so please grab every opportunity with both hands, don’t wait for life to come to you. Always say goodnight to your family and lastly, never go to bed on an argument! Life is just too short!