The text below is taken from a blog on Family Carers Net, which is a brand new fantastic online community for Carers we encourage all the amazing family and friends Carers of amputees to get signed up. They would love to hear from more Carers – it can just be a short couple paragraphs or a video – it can be whatever you like but it is important to share the invaluable work you do !! Remember you are never alone !
Blog website: https://familycarersnet.co.uk/2018/11/13/emmas-story/
Family Carers Net: https://familycarersnet.co.uk/go-local/
Hey I’m Emma, I am wife, Mum, Business Owner, Charity Founder and carer for my amazing husband Leigh who is an amputee and has a disintegrating right leg.
My husband lost his leg in January 2008, 6 months after we met and after a simple Operation went horribly wrong. He was 25 years old, a party loving, hard working young man. We had, had an absolute ball getting to know each other, we were inseparable and we loved working hard and playing hard. We did a lot of travelling in just 6 months and so when on 28th January he became seriously ill I knew there wasn’t any place else I wanted to be. I was finished my masters degree and Leigh’s dad said to me “if you need to go, go do what you need, Leigh won’t want to hold you back” to which I replied he won’t hold me back he is the one for me I want to build a life with. Sounds corny I know, but that was the absolute honest way I felt however neither of us knew just what was ahead.
In our Naivety we believed once he was walking everything would return to ‘normal’ what in fact follows was 10 years of 2/3 operations or procedures a year for Leigh with bone Spurs, neuromas, infections. We just didn’t have a chance to breathe and somehow through all of that I completed my Masters degree at Leigh’s hospital bedside with him helping massively, we moved to Suffolk, started a family, created 2 businesses, tragically lost Leigh’s Dad to cancer who was a massive Influence in our lives, we also tragically lost our baby boy Bobby which devastated us but we also got married, founded a Charity and managed to have some magical, happy times together. So although it has been the toughest time, we have held on tight together terrified of what might be round the corner but we have also ensured we have made the most of everything for we know life and health is precious.
Until you have experienced loss of life or health problems no one can imagine the pain, fear and concern you live with. Leigh and I were young at time of his amputation and our way to deal with it was not to really accept it had happened and just get back to normal life. Leigh tried to return to his Printing job but had nasty falls and simply could not do it any longer. He completed web design courses but struggled as every time he made a breakthrough he would need another operation or have a fall or be seriously ill.
I never saw myself as a Carer, Leigh is someone who never wants to be seen as disabled, he Didn’t want many people knowing he was an amputee but we learnt we cannot hide from this we must accept where we are at and seek the support we needed from the massive carers network that exist and socialise with other amputee families as they know exactly what we are going through. It is heartbreaking to witness someone you love in pain but also struggle to regain his life and still almost 11 years on Leigh is still struggling but we think we may be at the end of a long Prosthetics battle and finally getting the support for his full leg he needs to Prevent amputation for as long as possible.
The stresses of caring for Leigh and witnessing him enduring everything caused me to fall ill, and I was admitted to hospital. At this point my world collapsed as I could not be there for my family. I had pushed myself so much that I had become so ill and now they had no one – any Mother’s absolute nightmare ! I returned from hospital but struggled to provide care, so I took a step which horrified me at a time and phoned social services. I felt ashamed and a failure who was unable to look after my family.
I wasn’t used to asking for help, not even from my family, but I knew I had to do something, I was in an absolute state so I rang social services and said ‘don’t know what you can do, I don’t know what I need but I need something. Can you help me?’ It’s exhausting being a carer, but I feel I have the support I need now, it feels like I am winning.
For years, we held onto the pain and struggles thinking come on get over it – just get back to ‘normal’. That word normal is so detrimental as I don’t know anyone who has a normal life we all have challenges some worse or better but nevertheless normality doesn’t exist. So once we started letting go of being NORMAL, meeting other amputee families through a Facebook group called STEEL BONES we started we felt huge relief!! Steel Bones is now a voluntary charity and has greatly helped Leigh and I work through the disability and find our place in the world as it were to fit with our family and to give our children the support that our family is not alone we are different but the same as all these other amputee families.
We had always thought asking for help was a weakness and showed we couldn’t cope however, asking for help, meeting others like our family has been the greatest gift to our life and saved us. I remember saying ‘oh I’ve got enough friends, I don’t need anymore’ and yet That’s exactly what I needed to surround myself with other carers so we didn’t feel so isolated and alone. This was far from a sign of weakness but strengthened us to battle on each day !!
I always used to underestimate what we had endured, and one great friend once told me whenever you start saying ‘ I should do this’ or putting pressure on yourself it’s important to take a step back, just take 1 minute to do some deep breathing catch hold of yourself. I still struggle to do this as carers our minds are constantly busy on what we are doing for the family or the person we are caring for BUT If we do not look after ourselves the world will Collapse as it did for me so whatever it is take time for you even just 1 minute a day 10 deep breaths. Put your alarm on your phone to do it, and build it up steadily, walking the dogs is my solace I leave my phone at home for 15 minutes which is scary as I hate not knowing they cannot get hold of me but I’ve built that up steadily over time and also if I cannot do it one day, I accept I am not invincible.
It has been a long journey and I still have to work on giving myself time particularly when things are hectic.