Tag Archives: Therapy

Honing lifeskills – 7Y2D COVID-19 Diaries Week 5

One of the unexpected advantages of living in lockdown has been seeing G and M start to take on a little more responsibility at home and honing some important lifeskills to see them surviving when they hit adulthood. I started with expecting them to fend for themselves at lunchtime, avoiding too many snack-based choices and including some healthier options to ensure a relatively balanced meal and, after a first week of moans and groans about what they were eating for dinner, sat them down to meal plan their dinners for the following week. They had to work together on agreeing meals that they would both enjoy and, where a compromise couldn’t be reached, settling on something that would be similar, but different. An example of this was the great lasagne vs. macaroni cheese debate, as G dislikes the texture of lasagne, whilst M would choose to eat anything but macaroni cheese. They agreed to disagree and so have one night in the week where they eat their own preferred pasta option.

Whilst planning their menu for the week ahead, G and M also had to take into consideration what staples we had in the house and what would need to be added to our weekly food delivery. We have been using a local food co-operative for well over a decade for our fresh fruit, veg and meats and they have been great at continuing to provide their food delivery service during the coronavirus crisis. The natural next step from meal planning was to get them more involved with cooking dinner as well, building off the cookery lessons they’ve both had at school. They were already well-versed in prepping their own fruit and veg for a meal, but they can both now competently fully make some of the simpler meals as well as working alongside either Mike or me with the more complex ones.

G and M have an undeniable sweet tooth and the last few weeks have been a great opportunity for them to flex their baking muscles too. The interesting thing has been that they have worked both together and independently when it has come to choosing and making their sweet treats. The starting point has almost always been to see what recipes they can find on my blog and then checking if we have the ingredients in the kitchen cupboards. So far, we’ve enjoyed chocolate cookies, shortbread and carrot cake and I can’t wait to see what they whip up next.

The great thing is that G and M are not only learning to cook and bake, but they’re also honing their skills in following a recipe and realising when sometimes it might need to be tweaked slightly to make the perfect dish. They’ve discovered the benefits of menu planning and experienced the frustration of when a key ingredient is missing from the store cupboard and needing to think on their feet to find an alternative. They’ve learnt to really work together, to listen to and respect what the other is saying and, when a compromise can’t be found immediately, to walk away and give each other space. I think that they’ve also discovered that cooking and baking can bring a much-needed therapeutic release from the tensions that we’re all experiencing from living on top of each other in uncertain times and re-centre their sense of emotional and mental well-being.

What does COVID-19 mean for you

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I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

Reaching out

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I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. That incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. My blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

The psychiatrist’s couch

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The thing about blogging is that, as well as sharing our experiences with others and maybe helping those who are facing similar journeys, it has become a form of cheap therapy for me. I can pour my heart out into my words, delete those that needed to be said, but not shared and publish the rest for the world to see and comment on. For those of you who know me well, you will understand that I’m not very good at sharing when I’m struggling with life, even to my nearest and dearest, and yet I can express my emotions through a few deft strokes on the keyboard almost without pause.

My Mum, who I know will be reading this and rolling her eyes (and yes, the phone-call will come later), frequently says she doesn’t understand the need to share everything with the world at large which so many of us do these days, be it through blogging or social media such as Facebook or Twitter. Is there an easy or obvious answer to that why? I can’t comment on why others share the most intimate details of their mundane lives, but I know why I do it. I have a story to tell and life experiences to share. When I started my blog I couldn’t anticipate how many people would read and follow my musings, but as I approach the 2,000th view of my blog, I am flattered that people have read something that has resonated with them. I know that some posts will be far more therapeutic for me than interesting for you, my reader, and I thank you that you’re prepared to bear with me and keep on reading.

The rest of today’s post is very much in that vein as life with M is proving difficult right now and I need to lie down and share from the psychiatrist’s couch.

Since M’s relapse back in April, we have been waiting for his system to settle and for things to improve and return us to where we had been at the start of the year. Our GOSH appointment in May had reassured us that his gut would repair and they spoke positively about the possibility of trialling one of his forbidden foods and even reducing his medication over the next 6 months.

Unfortunately, life hasn’t turned out that way and instead we are caught in a downward spiral and seem to be sinking fast. Our weekend at Legoland was a real step back to where we had been and much nearer the beginning of our journey then we were happy to be. As well as the return of multiple soiling accidents with chronic diarrhoea, M has suffered from stomach cramps, overwhelming tiredness, fluctuating appetite and blood in his stools. He is obviously struggling with his emotions and frustrations and is just generally out-of-sorts.

My conversation with our ever-wonderful dietician last week confirmed my inclination to speak to M’s gastro team as we really need to get him back on track. I was worried that we would be asked to remove something further from his already restricted diet, but the registrar told me that that wasn’t the way forward right now. Instead, we are introducing another medicine into the mix to try and suppress the reactions he’s experiencing and are being sent to our local hospital for an abdominal x-ray.

There are no easy answers to this problem for the time being. We don’t know why his small body has gone back into hyper-drive in response to the food allergies and we are feeling helpless in our inability to regain some semblance of control. If the x-ray is clear, which we’re expecting it to be, then the next logical step is another set of scopes, but that isn’t an easy decision to make because of M’s problems with anaesthetic. We also know that we still haven’t removed the possibility of moving M to the elemental diet from the table either and that seems like a daunting prospect.

The one thing I have learned from the wonderful families we met through FABED is that we’re not on our own and that however hard the next step might seem to us, there will be somebody else out there who has walked that path before us and will hold our hands along the way.

What’s more, a cup of tea or coffee and a chance to escape the EGID world, even for half an hour, is great therapy too.

7 years to diagnosis

Searching for an answer

Tag Archives: Therapy

Honing lifeskills – 7Y2D COVID-19 Diaries Week 5