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.
Around about the same time as my symptoms returned, very heavy periods, excruciating period pain and bowel movements, Tom was diagnosed with Autism Spectrum Disorder, more specifically Asperger’s.
I had been a single parent since Tom was 3 months old. This little chap was only 3 years old and he couldn't understand why Mummy didn't want to play with him or take him to the park. It limited all the things that I had planned to do with Tom and I honestly feel that in a way it stole part of his childhood. The only way Tom could deal with his frustration was to get stroppy, throw things and try to hit me. Even when I tried to remove myself from the situation, he kept coming until eventually he'd burst in to tears and calm down. The upsetting thing for me was that I could see these situations spiralling out of control and there was nothing I could do to prevent or even lessen the meltdown. It had to run its course.
I eventually had laparoscopy no. 2 and they found and removed a cyst on one of my ovaries. Again I thought, “yes that's sorted here comes the rest of my life”. Oh no. About 3/4 years later my symptoms all started up again, only this time they were even worse. After yet another laparoscopy, when I came home Tom said that if I had any more laparoscopy scars I would start taking on water in the bath. His jokes have never improved. As he got older he did start to understand that Mummy was in a lot of pain and tried to help in his own little way.
The next recurrence started with my periods getting heavier, excruciating pain like I had never experienced before. I had to crawl to the toilet on all fours and had to be off sick from work for at least 2 days every month. Eventually the pain was bad all the time, analgesic tablets didn't touch the pain. The only relief I could get was to put a heat pad on my abdomen and back and curl up in bed.
Laparoscopy. no. 3 showed I had grade 4 Endometriosis, I had a procedure called a Hydro Thermal Ablation which eased the symptoms, thank goodness because I got married and we went on our honeymoon not long after this.
When the Endo symptoms returned yet again I had had enough, I had no quality of life. I couldn't go out walking, go line dancing, or socialise because I couldn't even leave the house, let alone do a food shop. Thank goodness for internet shopping! Tom was 16 by this point and put all the shopping away for me. He frequently checked the 'use by dates' on all the food in the kitchen cupboards and threw them out if they were even slightly out of date. I had to retrieve several tins from the bin. He's gone the other way now, refusing to throw food out until you can see the mould on it. Just another Asperger’s quirk. If we had go shopping in town, the route had to be planned by where the toilets were situated. It's no way to live.
In 2011 I had a Hysterectomy and Oophorectomy. The consultant suggested leaving part of one ovary, but couldn't guarantee that the Endo wouldn't continue to grow. But I just wanted it all gone by this time. After a couple of days I felt better than I had felt in years. My husband said he knew I had been ill but now realised just how ill I had been.
There are two positives to come out of all this. One was that Tom learnt to cook. He was off to University soon and I knew if I had suggested that I teach him to cook he would have dug his heels in and refused, but because I wasn't going to be able to do anything for at least 6 weeks he didn't really have a choice. Tom now makes a mean Spaghetti Bolognese!
The other positive to come out of all my Gynae problems is that Tom is very understanding of women who have similar problems, in fact any health issues, which considering he has Asperger’s, to show that level of empathy is no mean feat. It also meant that Tom understood PMT before he really knew what it was, just that Mum was going to be fabulously unreasonable for one week a month and that she couldn’t help it.
I would love to say that I am fully fit now but with a Hysterectomy comes a mechanical menopause and all that has to offer - hot flushes, anxiety, panic attacks, loss of confidence, weight gain, and worst of all brain fog!
Five years after my Hysterectomy, some of my symptoms returned, which I couldn't understand. I had my first trip to hospital in an ambulance because I was in so much pain I couldn't get off the sofa. I was then referred to Gynaecology, and I kept saying that I didn't have any gynae left! What I hadn't thought about was scar tissue. I had yet another laparoscopy (no. 5 I think) to remove as much of the extensive scar tissue and adhesions as possible.
The Consultant has said that he can't guarantee there won't be any more scar tissue but if it does return it shouldn't return for 5 years. Fingers crossed it isn’t quite as soon as that!
Endometriosis is a truly debilitating disease, not just when women have their periods but as it gets worse it is all the time 24 hours a day. It is depressing and extremely draining to be constantly in pain all the time. You feel very isolated and alone. When partnered with the struggles of being a single parent to an Autistic child, some days are an unwinnable battle. I wish I had had the support of a community like Spoonie Village when I was at my worst. Endometriosis really needs to be diagnosed much earlier and there needs to be more awareness about it, GPs definitely need to be more aware and offer support to sufferers.
A quick note from Tom: My mum talks about her illness as something which had a negative impact on my childhood. Sure, it was difficult for me to understand at the time and I’m sure there are days out I missed out on, but I’m certain that I wouldn’t be half as empathetic and caring as I am now without it. It also means I’m not squeamish when it comes to talking about conditions which afflict people with uterus’, which is just as well since editing some of these blogs would become impossible! In all honesty, I think considering the difficulties she faced and the kid she was given to work with, my mum has done an amazing job. I wouldn’t be the person I am without her. So happy Mother’s Day, Mum. You’re alright I suppose.
@memyselfand_m.e (Connie)'s Mum - Helen
Being a mum to a wonderful young lady who has suffered from a chronic illness for the past 8 years has been an incredible journey. Motherhood is a journey of discovery and learning anyway, but nothing prepared me for the last 8 years.
I would use the analogy of planning and preparing for a holiday, researching what you are going to do, things you will see and packing your suitcase with the right clothes. Having a child with ME is like stepping off the plane at the wrong destination with no map. You are left bewildered, frightened and ill equipped. You know what the trials and tribulations are supposed to be like for a 13-year-old girl but nothing prepares you for the consequences of this journey. Watching my daughter go from an outgoing, sociable, confident young lad, who was popular at school, fit and healthy, playing football, running 5km on a weekend. Our house was full of laughter when my daughter was at home.
She experienced such discrimination because of a misunderstood illness, her mental health is the biggest challenge I have struggled with. She developed anorexia, she self-harmed and became socially isolated. All those dreams and plans you had went out of the window and you had to adapt not only personally but as a family. Some days her biggest achievements became just eating something or getting dressed.
The journey has been extremely tough not only because I have spent the last 8 years feeling guilty that it wasn’t me. I had to be a bystander watching my child in daily pain and struggle just to live. I have not coped at times but that has not been obvious to many, I have done my crying behind closed doors. I have been so angry. Why her when she is so young? How cruel. What did she do to deserve this?
The way we have managed to get through this has been by having a positive belief system, in not only that she will get better, but she will survive. We have carved out some sort of life for her but it’s not what she or I wanted. However unfair it appears we know that we are lucky in so many ways. The family has adjusted to the unfairness and the unpredictability of this condition.
Despite arriving at the wrong destination, we made the best possible way through. We have created memories despite the awful consequences, we have been determined to fight, we have never given up despite this illness and the temptation to. Her determination has inspired me to get out of bed everyday, and never give up this fight. She is an incredible young lady who I am privileged to have as my daughter.
We have packed another suitcase and we will continue to survive this journey together.
Amanda - @thefamilypatch
I once heard somebody say that if they had to describe parenting in one word, it would be “relentless”. So when we became parents ourselves, I remember thinking that the complete and utter overwhelm we were experiencing was normal, and that other parents must just be better at coping with the relentlessness of parenting than we were.
What I didn’t know at that time, of course, was that our experience wasn’t exactly typical. My son was diagnosed with Autism just after his 6th birthday, but the signs were there all along. He never slept well. He became obsessed with numbers at 18 months old. He taught himself to read aged 2.5 and write aged 3.5 years. His academic ability was massively advanced, yet his social skills lagged behind his peers. He’d swing between completely ignoring other children, to wanting to play with them but not knowing how to interact. It is like he doesn’t fully understand the world, and the world doesn’t fully understand him, and at times it breaks my heart. Because if anybody understands what it’s like to not “fit in”, it’s us Spoonies, right?
My husband and I are both chronically ill, and sometimes the challenges we face feel insurmountable.
Don’t get me wrong, we have a strong family unit and, if anything, both of us being Spoonies makes it easier for us to understand what the other is going through. In a similar way, our son’s Autism does the same thing. For instance, when I’m overwhelmed by external stimuli during a migraine, I get a glimpse of what the sensory overload must be like for my son.
But it is still unbelievably hard at times, in ways I am sure most Spoonie Parents will understand. Trying to explain to your child that you’re in pain or feeling sick and you’re not going to get better in a few days time (like when they get sick) is really tough. Dealing with the guilt of, yet again, having to stay home and rest in bed quietly rather than going out and having fun can be soul destroying. And seeing your child simply accept this as their “norm” is painful beyond words.
Yet as time goes by, I’m beginning to learn there is a beauty in it as well. We’re raising a child who sees beyond our disabilities. We’re raising a child who understands there is true strength in weakness. And we’re raising a child who has limitless compassion. And in turn, through his acceptance of us, he is teaching us to be kinder to ourselves. Being a Spoonie Parent to a child with Autism is challenging in ways I cannot even begin to explain, and yet it is all the more beautiful for it.
I wouldn’t change it for the world.