Hello, and happy Mother's Day (in the UK at least)! To celebrate this day, whether it's today for you or another date wherever you are, we thought we'd dedicate our whole blog for the week to mums! So, in the following post you'll find 4 stories giving 4 different perspectives. We have stories of mums who care for Spoonies, Spoonie mums who care for their kids, and even a Spoonie mum who has a little Spoonie of her own. It'll also give you a chance to meet Hayley and Tom's mums!
We hope that this can serve to show that, whatever difficulties health can throw up in our lives, there is something unique about the relationship that a person has with their mother, and if anything being a Spoonie can only strengthen that! So make yourself a cup of something tasty, get cosy, and join us to celebrate Spoonies and their mums everywhere!
Hayley's Mum - Sue (Tom likes calling her Susan though)
When you become a mother you know that you’re going to care and look after your child until they reach a stage of being independent. Initially, the thoughts throughout my pregnancies were overwhelming because although there’s excitement there’s also apprehension, you’re aware these small people are going to be totally reliant upon you, and it’s a such big responsibility. However, for me personally, upon giving birth and meeting my children, I was overwhelmed by the extreme feelings of love and protection I had towards them which in reality made the daunting prospects I’d envisaged seem natural and helped me adapt to being a Mum.
When your child is growing up you expect to encounter childhood illnesses such as coughs, colds and viruses etc. From a young age Hayley developed asthma due to bronchiolitis as a young baby. This experience gave me an insight and understanding of what it is like to fight for a diagnosis, as the GPs wouldn’t commit to diagnosing asthma at a young age. Although I knew what was wrong it wasn’t until Hayley stopped breathing aged 2, that the doctor on call wrote to our GP to confirm it. However, what you’re not prepared for is ongoing health concerns that take many different investigations, time and don’t lead to answers.
This happened with Hayley aged 14 with severe migraines. For over a year she would get them once a week leaving her bed bound for at least 2/3 days. As her Mum and being a single parent during this time I was an advocate for ensuring she was given care and fighting to get answers, while she was experiencing them I was juggling taking care of her and working. On top of that, I also had to deal with education authorities who wouldn’t accept medical investigations or my explanations. So as a Mum you become involved with so many aspects of care giving but also having to stand your ground to be believed. In my experience there was no support for a parent going through this. Instead, I was met with challenges at every turn. Fortunately, I was supported by close friends during this time otherwise it would have been even more difficult and lonely to handle and I’ll always be grateful to them.
Sadly, although Hayley recovered from the migraines, in some way it was only preparation for me in what came next, when at 17 she became ill with Glandular Fever that she has never fully recovered from, and is now diagnosed as ME/CFS. It threw up similar situations for me as a parent not being listened too, not getting answers, being made to feel like a liar and constantly fighting to be heard. The college she attended in particular made life very difficult and consistently refused to believe she was ill. At one time they told me I had to bring her to college for parents’ evening, regardless of how she was because I was told it was all in her head, that she just didn’t want to attend. Being her mum and taking care of her when she was so ill was extremely difficult for me, because I had to go to work full time also. I would leave drink and food by her bed, moved the telephone into her bedroom so she could contact me if she needed too. As a parent I felt very helpless and guilty for leaving her, but bills still need paying and food needs to be bought. It was very upsetting to see her almost unable to walk to the bathroom even with my help, unable to always put one foot in front of the other. She spent all the time in bed and often didn’t have enough energy to speak. She did thankfully show signs of improvement after about a year and half but still had set many backs, I really thought she would never leave her bed again.
Throughout the whole experience there was very little medical help and although there were a couple of basic internet forums at the time, I wasn’t aware of support or given any advice or help, you’re just left to cope and care while people tell you it’s not an illness and that it was all in my daughter’s head.
Although Hayley did recover to a point of being independent for a few years, 10 years later from first falling ill she relapsed again and I don’t think anything can prepare a parent for becoming a full time carer of an adult child. No body wishes to lose their independence but with a chronic illness like ME/CFS you have no choice. I’ll always be her mother but at the same time as an adult caring for an adult child, it’s a feeling of going back to the start because at times she is as helpless as a new born baby. I have had to feed, clothe and take care of all her needs, despite her being at an age where most people live independently.
This time around there were more charities and places to seek support, the only problem is that often it needed to be done by Hayley as she’s now an adult. So for example if she was too ill to speak on the phone, she would need to give consent for me to discuss things instead. One of the things that sticks in both our minds is a conversation Hayley had when making enquiries at Citizens Advice to find out what help was available. When asked about who took care of her she was asked “does your Mum care for you as a Mum normally would or as a carer? Hayley replied “well, if you mean do normal people’s mum’s make their child’s beds aged 28, because they don’t have the energy then she’s still my Mum who is doing the role of a carer, so she’s both”, raising the question where does a mother’s care become the job of a carer? Because when it comes to chronic illness and caring for an adult child, the lines blur massively.
In my experience there is still a lack of support and awareness for parents who do take on a carers job role. People still don’t believe what I have to do for my adult child. I personally have no problem with what I have to do to help and care for my daughter, whether she is able to live independently or not because I love my daughter as much, or if not more, than when she was first born. My love and care for her is like a circle, it is continuous.
Tom's Mum - Heather
Hello, my name is Heather and I am Tom's Mum. Endometriosis has been my nemesis for 25 years. I first started getting symptoms when I was 28, and I had my first Laparoscopy a year before Tom was born to separate and cauterise the adhesions. Naively I thought that I had seen the back of this debilitating disease because I hadn't had any symptoms for a couple of years.