As we approach the end of carers week I want to focus on the person who is my life, who is my guiding light, my anchor and my number one supporter. However, before I begin here’s an extract from the Carers Week website to set the tone and scene of this extremely personal and poignant piece that pays tribute to someone who I can never thank enough and who is the most important part of my life. A relationship like no other…..
Before I begin, let’s set the scene on a National Scale;
Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK. It also helps people who don't think of themselves as having caring responsibilities to identify as carers and access much-needed support.
This year, people across the country are continuing to face new challenges as a result of the coronavirus outbreak. Many people are taking on more caring responsibilities for their relatives and friends who are disabled, ill or older and who need support.
They need to be recognised for the difficulties they are experiencing, respected for all they are doing, and provided with information, support and understanding.
There are 6.5 million people in the UK who are carers. They are looking after a family member or friend who has a disability, mental or physical illness or who needs extra help as they grow older.
Caring's impact on all aspects of life from relationships and health to finances and work should not be underestimated, and carers are facing even more difficult circumstances this year. Whilst many feel that caring is one of the most important things they do, its challenges should not be underestimated. Caring without the right information and support can be tough. (https://www.carersweek.org)
On Thursdays we have been clapping, we hail the work of the NHS, the carers working in homes, the key workers and volunteers. But to me there are hidden carers who are devoted to supporting the lives of loved ones though the trials and tribulations of mental health, physical well being and learning disabilities who aren’t being celebrated by the outside world. Perhaps people are unaware of the self-less actions of people caring for their own children, parent, siblings and children. They are carers with a hidden voice. Their work goes unpaid and saves the nations caring resources from being over stretched.
So I want to give an insight, to share what I experience every single day of my life. The person who makes it worth me dragging myself out of bed each day. Supporting my needs, sharing compassion, being a sounding board. But above all, never giving up on me, never wanting anything back, never questioning my needs and recognising when I’m sinking. Guiding me and supporting me to solve the problems or helping me identify what is happening by channeling my thoughts and strategies, instinctively knowing when medications need adjustment.
All this despite the diverse complication of my complex health which reaches through mental health and physical disabilities that spread across Endocrinology, Neurology and Rheumatology and specialised physiotherapy and dietary requirements. This makes my need for care vary day to day and often difficult to manage. How I wake up and feel in the morning is beyond my control.
But Where do I begin with this? Having a member of the family as your carer is a unique experience.
This is my carer, my Mum, my best friend, my rock. My lifeline to the outside world and thousands of others who do the exact same thing. In fact she has been this ever since I was young. Our relationship made stronger through the challenges we have had to face together. Things that have happened that people from the outside and even family members will never be able to understand. In ways in the past we have switched roles but never has this balance been so far the other way.
As a Mum I love the way she looks beautiful inside and out, her smile, the way her hair curls after a perm. I love the way she lets me ramble on, speaking the thoughts from my head that can be endless, the way she descends into giggles when something makes her laugh. The way she loves wildlife and watches over ‘her birds’ which have names! The delight on her face when she returns home from shopping (a distant memory at the moment) with a trolley full of bargains despite her bursting wardrobe! The way she talks about TV programmes that I miss when I head to my bedtime yoga each evening.
As a carer she is still my Mum but I love the care, the sensitivity, the softness of her touch when she hugs me, rubs cream into my aching joints and muscle spasms, the way she massages my feet when they lock in different angles. Coping with my paranoia, my mental health decline to an extent where my head can sit above sinking level and avoid the need for intervention beyond the home. The say she spends her time with me so I can swim and how she supports me at medical appointments.
My approach to treatment now has to incorporate the traditional medication for Addison’s and my other medical neurological disabilities and conditions alongside physiotherapy, yoga, pacing, logging, analysing my health and implementing additional medication and strategies. It’s a rounded approach and needs meticulous planning. Day plans, scheduling, what we do around my medication times and ensuring the right amount of physical and mental activities that I can manage, through trial and error of strategies, medication changes and lack of hospital guidance, she takes on the role of Doctor, physio support and care giver.
Over the COVID-19 she has worked overtime with me to ensure that I feel safe, happy and can manage my days. Encouraging me and helping me ease the pressures, turning my worries and concerns into possibilities and could be’s instead of disasters and mental melt downs.
How many people can offer that kind of gift? There has been a huge transition that we have had to work through together in the same way as others. However, my hospital appointments have stopped, swimming isn’t possible. So much time that needed to be filled. Trial and error and balance of routines. Controlling what I can and applying my strategies. Helping me determine which strategies work and which don’t. Through blog writing we have experimented, assessed and utilised the best of the bunch (But that’s for next week!)
Exercise has been tricky but made easier in some ways to focus on my physiotherapy and try new things that help my hand-eye co-ordination as well as actual workouts. Active Essex has been a great resource for this as have my swimming club but it’s all needed adaption planning. We will definitely continue with the 30-30 (see link below).
We have been kept informed by the Pituitary Foundation who been on top of everything that Pituitary patients needed to have throughout the pandemic. This is vital as with my Pituitary Insufficiency/Addison’s Disease I have a potentially fatal condition. Additional stress can bring on a a crisis and so close monitoring is needed.
We have used a great video from Mind on Meditation ideas which is a fantastic introduction to give ways to feel better about things and visualise those happy places that I wish to visit again. (link is below)
A positive of this time has been that we have tried new things, introduced each other to new founded hobbies, sharing exercise examples, listening to each other, supporting each other. We have always loved craft and colouring but these have developed and we have learnt new techniques and added different mediums. Some which Mum will continue and some se won’t and vice versa. It doesn’t matter that her half of the table is messy and that mine has everything it a specific spot with activities planned in abundance (that doesn’t surprise you!) The main thing is spending time together and checking in. It’s about the making and the process. She has introduced me to nature and her love of birds. Some things are a flop for one and a treat for others. I have no intention to weed and she has no intention to do more speed stacking but we gave them ago!
Over the years I guess we have at times switched in terms of who is the care giver although, without question the balance is definitely pushed towards me needing more and the rock beside me is all that I need right now. Whatever it is she is there, a sounding board for my writing, an editor for blog posts, for reminding me to reflect and analyse while sitting down so as not to be distracted and fall or filter in whatever task I am trying to complete.
I have relied on her to paint me a picture of the world outside during lockdown. Explaining the strange manner in which you approach others, the need to walk on the road, the way Tesco have their screens and one way systems. Asking about how safe it feels? Explaining the boarded up shops, pubs and cafes. Then the rainbows, the hope, the reality. What am I facing when I am ready to branch outwards into real life? How?
Now things seem to be moving too fast. The pool I so desperately yearned for is coming on the 4th July, the pandemic is receiving less air time and more news seeping in. So now what for us? We have to start all over again and that terrifies me. Now we need an ‘out of lockdown’ plan. With five appointments due this could be a hard road ahead. But as I am reminded I should go my own pace and that’s what I’ll try and do.
The only reason I can begin to think about this is with my shining star beside me. Without her there is no one who could help me more and she is willing. But we must remember the work we have done and some of the strategies old and new are the ones to go with and as I tentatively approach the world I have to remember to continue to pace, analyse, look after myself and not rush too far. We all have our own journey’s ahead.
What does she want in return? Absolutely nothing at all. Apparently just being there is good enough and that’s a happy thing to remember. She may be my world but equally I am her world. There are things I wish things were different but what we have is special and should be cherished and celebrated. I am lucky and privileged to have her and could ask for no more. She never waivers, her strength incredible and very strong shoulders, especially now she has adopted the yoga routine I created for her.
If theres one thing that must stay and remain a positive is the different range of activities that we do. I don’t want to loose the connection with nature and taking guided tours of the garden. I don’t want to loose the passion to write for others. What I do want is to lessen the burden but if that is possible I don’t know. Whatever happens I know that through it all there will be my secret weapon waiting to catch me if I fall.
On that note, please stay safe, stay well, be happy and keep talking!
However, it wouldn’t be one of my blogs if I didn’t leave you with a few special links that relate to this important piece! So here goes, I hope you and your carer find them useful.
Mind
This meditation video give you numerous things to try in order to help calm you when needed. A great introduction and shares craft, nature, active meditation, sitting meditation, finding your happy place and more.
We are Undefeatables
A great way to follow up the mind video is to tap into some of the video’s on the We Are Undefeatables You Tube site.
Laura Lemon Tree takes you through some basic Yoga poses. They are produced through the MS channel on the Undefeatables page.
Or you could watch How Mohan's staying active at home through his love of nature despite having dementia.
Learn more about Mohan and find resources for staying active with dementia on the Underfeatable site:
This video is all about ‘Moving Around The Home’ and ideas that you can put in place really easily and leads us lastly into Active Essex.
https://www.youtube.com/channel/UClEmdVc80h7Gft4olLkwGhw
Active Essex
Move more in June as part of the Active Essex 30/30 challenge to do 30mins of activity a day in small chunks that are manageable for every level. Sticking up the link below you can get some basic ideas which link well with the hobbies and interests we have shared together in recent times, such as being with nature and yoga etc.
Want to take things further? Have a look at the activity timetable produced by Active Essex which includes not only 30/30 ideas but also a full timetable of classes for you to try. Relax and meditate with Marissa which alongside the stretch and mindfulness sessions compliments the Mind video as does Yoga and Meditation with Kate. New timetables are produced each week.
The Pituitary Foundation
The Pituitary Foundation have produced excellent support for all and have been a lifeline for us, with top tips and important things like the distribution of NHS crisis cards that should have been sent out.
Guiding us through with their fantastic publications an informative data, all of which advice has been crucial to us in managing a challenging and potentially fatal condition when stress levels are high.
A great booklet to read is Fatigue Management which you can download at this link and would actively support people with all kinds of helpful information on pacing, managing stress and things to consider that can help you get through your days without having a crisis situation.
The news feed can be found on:
Next week - look out for The Wheels Are Moving Too Fast!
The world is suddenly opening up and I can’t keep up. I’m scared, frustrated, worried - what will it be like?
Everything seems to have changed overnight and keeping my head above the surface as we face numerous new charts, confusing guidelines and additional criteria to meet.
I’m not ready to go back out again yet - it’s not safe, the virus is still there, the infection rate bubbling just below 1 and still too many deaths and new cases for me to become confident to go far. For those of us with long term medical conditions and or mental health and disabilities this transition will be slower and at our own pace. We need to arm ourselves and prepare for our new normal. Right now I am not ashamed to say that mentally my health is poor. That’s what we are supposed to do isn’t it? Talk about it? Share our emotions, bringing problems to the surface before they decline into un-chartered waters.
This blog will be more my thoughts and feelings as they enter my head with the trust of some websites and strategy implementation. It may become a tad sketchy in places but that’s really what it is. It’s therapy for me and i’m taking a huge jump to actually speak out like this. It’s tough to write it but harder to share and I have contemplated about posting but join me next week as we set out our transition to the new world..