Lockdown Awareness

I haven't posted on this blog for a while and feel bad for neglecting it - being May and invisible illness awareness month plus the month for nurse awareness week it seemed apt to discuss both the lockdown due to the pandemic, nurses and carers plus chronic illness awareness.

In my pre-chronic illness days I was a nurse and I whole heartedly support all those within the caring profession for their dedication to their jobs. It is not something you can do unless you genuinely care about the job and caring for others. I LOVED being a nurse and miss it terribly, yet the knowledge and skills I learnt haven't gone to waste and they have been/are utilised in my private life when caring for my family when addressing accidents and in times of illness. 

As a family we have used the Children's hospital heavily, with many inpatient episodes throughout the girls childhood and adolescence. As adults we have utilised many departments from cardiac, A&E, physiotherapy, hydrotherapy, mental health services and regular outpatient support. Our NHS has been invaluable to us and I cannot express how passionately I feel about supporting and caring for those who work within this service. 

I have quite a list of chronic conditions from multiple allergies to auto immune illnesses which mean that I am predominately house bound, sometimes bed or sofa bound and rarely get out and about and if I do I have to utilise mobility aids and plan the excursion carefully. I am currently looking into a mobility scooter but finances due to the pandemic mean that this may be on a wish list for a while. 

For many, life in lockdown is hard, the limitation of freedom especially, loneliness and isolation a struggle to adjust to - however, this is my normal. The only change for me is that my loved ones can't visit and I have heightened anxiety due to fear of either myself or a loved one contracting the virus. Lockdown life is pretty much my everyday reality, not one I would have chosen for myself and one that crept into my life insidiously, eroding my abilities and freedom little by little, until I reached the situation I now find myself in.

The problem with many of these chronic illnesses are that they are invisible - you can't see them and so you wouldn't know to look at me and others like me, that we are sick. This leads to disbelief and a long and ongoing fight for the proper support and treatment. Media misinformation doesn't help our fight and so finding someone willing to speak out and support us is always incredible, so imagine my delight when I came across the wonderful Miranda Hart on Instagram and her posts raising awareness about chronic illness!

I love Miranda Hart and have often been likened to her TV character, which I will take as a compliment - I thank you.

When I came across her Instagram I immediately followed her and I am awed by her advocacy for Chronic Illness (if you have Instagram I urge you to follow her). This woman "gets" it and it feels wonderful to be "seen". Take a look at this post below (found on YouTube because I couldn't embed the Instagram video on here)

The pandemic and resulting lockdown is hard on everyone - looking at those staying at home I often think of the impact it has on the elderly - those living in nursing or care homes and those living alone at home. If in a care home I reassure myself that at least they have others around them - but I worry about the elderly living alone without the support - who must suffer horribly from loneliness and anxiety. For those of us fortunate enough to live with family we have to ensure time alone for each of us - to have space to just "be" but also to allow any tensions to ease. I love my family and we are fortunate to get on well with each other - but what about those who live with someone toxic or abusive - I worry for their well being. For children who need extra support who may live in difficult circumstances, for the poor, for the homeless, for those struggling to hold onto their businesses, their jobs, their homes.

Life is going to be different from now on, things will take some time to return to some sort of normal and we all need to be aware of the myriad of difficulties we are all facing and support each other and not tear each other down. My priority once lockdown eases will be to support local businesses and also buy local produce and hope that others will do too - so that they can regain their livelihoods. I will minimise my online shopping, which is obviously a necessity right now - not stop altogether because there are some instances where the only place I can access these products is to shop online - plus many small businesses operate online who will also need supporting.

My normal is mostly pretty rubbish - I suffer constant pain, its much worse now since I had to come off my long term pain medications because they were making my kidney function suffer. I heavily utilise meditation and my Wiccan practices to help me cope with the situation and find that this spirituality really does have a positive impact on helping me cope. I can't exercise anymore - something I sorely miss, I used to walk miles everyday with the dogs, anywhere from 2 to 7 miles a day at a good fast pace and would feel refreshed and invigorated afterwards. No more swimming (I couldn't tolerate hydrotherapy either) or tennis. However, I have learnt Tai Chi For Arthritis via the Rheumatology Physiotherapist, which is helpful in keeping my joints moving and gentle enough to not hurt me. However - this inability to "do" a great deal let alone exercise, plus the impact of past medications, has led to a large increase in weight which I now can't shift. I have been supported fantastically by the medical profession regarding this and told that I have to accept that this is "me" now because it is physically impossible for me to do any aerobic exercise and I eat a good healthy diet and don't consume too many calories - if anything I don't consume enough. 

The thing is - when you have a hidden illness, others will judge you negatively - they see the weight and the lack of energy and movement and assume you are fat and lazy. Fighting negative judgements from strangers or those who don't know you well is tough. Justifying why I have a blue badge when I am seen walking sometimes without aids is frustrating. As is putting up with the snide remarks and sidelong looks. I wear my supports when I need to but also try to not rely on them because I don't want my joints to get too weak. I walk with my crutches when I need to but try to walk short distances without them to maintain what strength I have. 

Nurses and all the other medical professionals, support workers, teachers, cleaners, distribution agencies, drivers, and all the other many varied keyworkers keeping our country running as best as possible whilst the rest of us remain at home are all incredible and worthy of our appreciation and support. I participated in the clap for carers for the first few weeks because I am very grateful for the work everyone is doing and the risks they are taking on our behalf. BUT I don't clap on my doorstep anymore, which doesn't mean I have stopped my support or appreciation for what they do - quite the opposite - it's because I felt it wasn't enough to just clap as a thank you, more needs to be done. Supporting and vocalising the need for PPE, for real support for those needing it is more important and so I lend my voice to advocacy for them and lobbying for what they need. I do my part in helping my neighbours when I can too. Standing on my doorstep clapping doesn't do anything for them and many of my old nursing colleagues would much prefer real help and support right now instead. 

For many of you this will end, the lockdown will be eased and you will be able to leave your homes and start to pick up the pieces of your lives and build upon them to regain the pre lockdown life you had. For us with invisible and visible chronic illnesses our lives won't change much at all, with the exception of others being able to visit us. Many of you will be able to return to employment and an income - not all of us can. 

For some it will mean hardships if business or jobs were lost - but if you have your health you have the potential to earn and get a job, it may not be the job or hours you want but it will be a start. I will support anyone wherever I can who is in this situation and know that the foodbanks and charities will be needing a lot more input during the forthcoming months/years because of this too.

It's not a competition, I'm just trying to share the different realities and try to use this experience of lockdown to give you a glimpse of our world, our limitations and financial difficulties at a time when you may be able to get a feel of what it would be like to live like this full time.

We have to live on disability allowances IF we are fortunate enough to navigate the system to receive them and as you may be aware, its not a huge amount to live off either. Plus it entails numerous form filling, interviews and then refusals with many having to go through the appeal process in order to do so. I don't receive the money because my husband earns an income - not a huge one but enough for them to deny me any funding, despite my doctors writing letters of support to say I qualify for it.

So to the outward world, on the occasion that I go out or receive visitors I may look like this, because I am dressed and have made an attempt to look like everything is okay..

However, most of the time I look like this, which isn't such fun..

Without my family and my husband I dread to think how I would cope ~ they love me and care for me as well as living with their own health issues. We are a team and that is how we get through life, by working together and supporting each other. I know that I am fortunate and that although life isn't how I had planned it, it is still a life worth living and fighting for. One that is precious and valuable - so I will continue with the lockdown for however long is necessary and not complain. When lockdown eases my life won't really change but I will be vigilant about who I will be in contact with and take precautions until a vaccine is available - no matter how far away that may be.

I send love and light to all of you, each one of us is in our own unique situation and I acknowledge how difficult it is for many of us, no matter our age, health, sex or privilege -  mental health issues can affect us all and life can be a challenge.

I note and mourn each time I hear of a new death due to the virus, losing a loved on at this time is so much harder because the grieving process is impacted by the restrictions relating to visiting, funerals and access to help.

My heart also aches for the health care professionals who die as a result of catching this virus from working on the front line, as well as anyone else who passes away whose jobs to keep the country moving put them in a position of exposing themselves to the virus.

I thank all key workers from any and every essential job that you do for your service and dedication to keep things working for us. I sincerely wish I could do my part and am enormously grateful for your input.

I ask only one thing, at then end of all this, when life seems to have returned to normality and the pandemic is in the rear view mirror - please remember how it felt to live in lockdown and have some compassion for those of us who live like this everyday. To be "seen" is incredibly validating - to know that advocacy and support is out there for us and the potential for future adequate support and understanding for these conditions would be amazing.

It would be wonderful to one day not feel invisible and to be seen.

I end with this follow up video from Miranda about Chronic Illness, in case you haven't seen it.

Thank you for reading.

~ Brightest Blessings ~

 x~X~x