Dear Caretakers – A Thank You For Being There
From A Bedbound Woman
Dear Caretakers – A Thank You For Being There From A Bedbound Woman – Chronic illnesses and pain are difficult to live with and also difficult for loved ones to deal with.
It’s been 2 years and 5 months since I have been here; bedbound in my self-profiling bed in our living room where I have been since my operation in 2014 – it feels like yesterday, but at times it feels like forever. October 17th, 2014 – sounds like an eternity away……We thought I would “recover” by 7 or 8 months after the op and go back to how things were – normal for me meant in a wheelchair and in chronic pain with a whole range of health issues – but it wasn’t to be. The consultant had told me that recovery would be slow and difficult so we anticipated this, but I wonder if any of us realized it would be like this. The anesthetist had warned us that despite having lived with chronic pain for almost 18 years, this situation would be completely different. When she was telling us all of this I was thinking ‘how hard can it be?’ Well it was and definitely is.
Lying or being propped up in a bed 24 hours a day is not easy – especially when you are in constant pain, discomfort and unable to move by yourself. My body doesn’t respond very well to any type of anaesthetic, procedure or new medication – my muscles were affected and my Fibromyalgia flared up severely too followed by additional health problems. The operation left me unable to move or sit or do anything myself. Prior to the operation, I couldn’t walk, but I was able to transfer onto the wheelchair while holding onto my husband, but since the operation that’s not possible. My family has been trained by the O/T to put me in a sling and hoist me out of bed. I am unable to sit for more that 40 – 45 mins (on a good day) and despite having a custom-made electric wheelchair which has been designed to cater for all my needs, I am unable to sit for any longer than this.
It is draining – physically, emotionally and mentally.
These 2 years have not been easy to say the least and I don’t know how much longer things will be like this as recovery is very limited; it will take time for my body to recover – but I do know this – the love and help of a caring family goes a long way in any illness and those of us with any chronic illness such as Fibromyalgia, know how hard things can be from one day to another. If we have someone who is there for us, we should cherish and value them. It’s not easy especially when we are having a bad day and we take out our frustrations on those who are closest to us – as long as we make it clear to them that no matter what we say, we love and value them dearly. My husband and daughters have been priceless and amazing in this difficult time. They have been here for me every second of everyday, whether it’s two in the morning to reposition my legs or six in the evening or every hour when my medication is due, they are here. Many people have questioned why we don’t have a professional carer come in to help – the simple answer is my family is happy to care for me and wants to do it and I personally feel a lot happier with them doing it as long as they want to. They are my unpaid carers and my heroes. I love them so much and I think it’s important to say it as much as possible, because on days when things seem bad and in moments of frustration when we are crying about where our “lost sock” is (I’m sure anyone with fibro can relate to these moments!), it might come across as we are being totally unreasonable over a lost sock. What others don’t always realize is, that it’s not actually about the sock – it’s actually about the loss of control over our lives and not being able to do things for ourselves. At times like this, I always try my best to explain my feelings to my family so they are aware of how I feel.
I just want to write this for all sufferers of any chronic illness –
Things can be very hard and a lot of the time it feels like an upward struggle; like climbing a mountain. A mountain which has rugged and jagged edges on the way up; which slow us down and after a while our foot may slip and we end up back where we started, but that does not mean we stop climbing. We just have to wait for a little while, catch our breath and start climbing again. At times we may have to wait longer but we should never give up trying and while we are on this hard, perilous journey, we must always appreciate those who help us on the way – they hold our hand, support us and provide endless words of comfort.
The last few years have been very hard for me, but my lovely family have been there all the way. My wonderful husband and daughters have listened to endless stories about my pain and have fed, washed, dressed and hoisted me – I love them so much. My husband has never left my side and even though its “in sickness and in health” I still ensure that the last thing I say to him every night is how much I love him because that’s sums up everything he does for me and how much I appreciate it. We should never take that for granted.
It means a lot to all of us who are cared for, so a huge thank you to anyone who cares for someone – you are all special people and valued by those you care for. Sometimes we may not express it enough, especially when we are in pain or unwell as it takes over moments of our life, but we do mean it and we do feel it..
Thank you for being there….. thank you all carers!!
About the Author, Aida Ali:
I am 45 years old and am retired on ill-health grounds since 2014. I am a mum to 4 children; ages 24 to 7 and wife to a loving, caring husband. I live with a whole range of health conditions and disabilities which include: Spinal nerve root irritation, Fibromyalgia, Thoracic Lumbar scoliosis, Asthma, Chondromalacia Patella grade 3, Arthritis, GERD, Bile Malabsorption, Rhinitis, Allergies, Chronic Migrane, Chronic pain, to name a few!! I have been in a wheelchair since 2012 and since 2014 I have been bedbound following my Gallbladder removal due to all my problems and allergies; my muscles are affected after the operation; my body isn’t functioning properly and my recovery has been tediously slow and limited so I am unable to feed, dress, wash or care for myself and I am hoisted with a machine in and out of bed – I am unable to sit more than 40 – 45 minutes and that is only on a good day – which are far and few in between! I spend my time actively involved in the daily running of the household from my bed, as well as learning about my different medical conditions, medications, and self-help tips as well as reading on my tablet and home schooling the 2 younger ones. As a retired teacher this comes naturally to me despite being unwell most of the time. If I can still use my brain then I will – if my body has let me down at least I still have my mind. Hence the passion for writing – some people paint, some dance – I like to write.