I love that so many of you read my blog here at Sobadass, get in touch and comment on my posts. It’s such a joy to know that there are people out there when I am sat typing into the ether! Do you also follow me on my sobadass social media channels? If not, it would be amazing if you could drop me a follow.
Facebook
You can find me on facebook here. Even though my kids tell me that facebook is only for oldies, I love it over there and would love to see you over on my page. It is a good way to catch me if you want to chat as I am on there a lot.
Twitter
You can find my twitter page here. If you want to tweet at me or share links, your favourite things, what’s happening with you etc then follow me there.
Youtube
I have created quite a few videos over the past few years. You can find them on my youtube channel, hit subscribe and you will be first to know when another goes on there.
Instagram
I keep getting told that I should have a ‘professional’ instagram page where I only share edited, glossy pics. But that’s just not me! So if you want to see a mix of what I had for dinner, selfies, pictures of my chihuahua and general Cleasby family nonsense, then follow me on instagram today.
Drop me a hello on any of these platforms so I can say hi and we can chat!
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I am lucky to know some of the most brilliantly creative people and one of those people is Ellie Grace Photography. At the beginning of the Corona lockdown, she started a project called Doorstep Portraits. I got in touch and asked to be considered for this. And she agreed.
Ellie didn’t break any of the rules that were in place to run this project. The photographs were taken during her daily exercise with her lovely dog. She didn’t come close to the house, didn’t even knock on the door. She texted us when she was nearby and we came out to our doorstep.
I love looking though all the images she took, it feels like a secret peek into the lives of people all over Sheffield. You can look through all the photographs here. Also do consider Ellie as a photographer for your wedding, event or family photo shoot.
It was lovely to get a photograph of us all together during such a weird time. Often we take family photo shoots when we have little ones, but a few years ago, we had a shoot with photographer Corinne’s Nest and we absolutely loved it. I am so glad I now have these to look back on. You can see them here.
Photographs mean a lot to me, I love looking through old pictures. I am married to a photographer which helps! If you want to look at Timm’s work as a commercial photographer, you can visit Timm Cleasby Photography.
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I have worked with arts collective Responsible Fishing UK for the past eight years or so. It is made up of myself, my husband photographer Timm Cleasby, and our best friends; artist James Brunt and Graphic Designer Caroline Hayes. We have done work all over the UK and one of the projects I played a bigger part in was A Light To Guide, a story told through light tubes hung in a forest for Coastival in Scarborough.
I wrote the story of Johan, a little spider who goes on a journey through his home town of Scarborough and then the words were carved into cardboard tubes and lit from inside. We hung them in the woods so the story could be read as you walked through. You can watch the video here.
I have always loved creating art, whether that is through writing, textiles, ceramics, painting or any of the amazing projects I have been involved in with RF. Over the past year, this creativity has been a life saver. It has been my therapy, my escape and my joy. I have loved making more and more art projects but I have always felt a little shy in sharing them.
I want to change that. I want to recognise myself and know that it is OK to feel pride in the things I create. And so I thought I would start with the beautiful Light to Guide that I am so proud of. Hopefully, this will encourage me to share more.
I watched the film Jojo Rabbit this week (I would highly recommend it!) and there is a part where the characters share part of a poem by Rilke called ‘Go to the limits of your longings’. Here is the verse.
Let everything happen to you; beauty and terror. Just keep going. No feeling is final.
Rainer Maria Rilke
It really struck me. It actually brought a tear to my eye. I am having a hard time at the minute. I am still in a lot of pain and still waiting for a CT scan. I am scared that the surgery hasn’t worked. I am scared that I will never live a pain free life and I am so, so tired.
Tough times
I also have lost work, my radio show is on hold for the foreseeable future. I left my main job in January, I think I was just so fed up and scared of letting my team down as I knew I was having yet another surgery. I was having issues with a manager and just felt so down about myself and my job. The job I was meant to start in April has faded away due to corona and now I have no work and I just don’t know what I’m doing with my life.
I feel like someone has a voodoo doll of me. I keep trying so hard to overcome problems but every time I bat one away, another problem replaces it. It has been nearly 7 years since my first surgery. I thought it was going to solve all my health issues, and in many ways my ostomy did. It rid me of the symptoms of Ulcerative Colitis that had ruined my life for years. But unfortunately for me, it also brought a new set of problems.
It is getting to me. My surgery recovery ran straight into corona lockdown and so it feels like I haven’t really been out or done anything since January. And now I live in constant fear that my hernia is back or that there are further complications. I am still taking pain killers every day, I am in so much pain and it is getting me down.
I just feel like I have lost all confidence. I don’t know who I am anymore. I don’t know what I am or where my place in the world is. I feel so lost and adrift. It is scary, I can feel myself slipping backwards into that pit of despair. I am struggling to pull myself out of bed. Partly due to the pain, but also mentally. I have very little to actually get up for. No work, no social life, no certainty in anything.
Quotes
And then this quote. “Let everything happen to you; beauty and terror. Just keep going. No feeling is final.”
It reminded me of another saying; “everything will be ok in the end, if it’s not ok, then it’s not the end”.
We have little control of some things in our lives, there are certain things that will happen to us that are completely beyond our control. And the only option we have is to let everything happen to you, to say yes to the opportunities that come to us. Some of those things will be beautiful, some will fill us with terror. All we can do is keep going.
No feeling is final
No feeling is final. This is such an important thing to remember. I had something happen this week. I was really embarrassed. I was called out on my reaction to something and it made me feel really stupid. In that moment, I felt so humiliated, my face was burning, I felt sick and silly. It felt HUGE. Like I wouldn’t get over it. It made me want to hide away. In reality, once I spoke to someone about it, it lost it’s power and I was reminded that my feelings were valid. That heavy weight of embarrassment lifted and drifted away, leaving me with an insight into the situation and myself.
Feelings are so powerful, whether positive or negative, they can be totally overwhelming. But no feeling is final. We just need to accept them in the moment, enjoy them or learn from them and move onto the next situation.
“Let everything happen to you; beauty and terror. Just keep going. No feeling is final.”
Rainer Maria Rilke
Things may be overwhelming and difficult right now, but all I can do is to carry on living. Let everything happen to me, accept that things have and will continue to happen that I cannot control. And for all those things that bring me terror, I also have so much beauty in my life. It sometimes is really tough to find the silver linings when life feels shit. But they are there. In your friends, your family, the people you love.
Out of whack
My life is out of whack right now. No job, poor health, lockdown weirdness. I feel the nag of negativity. But lockdown has also meant that I have had 5 months of proper recovery after my surgery. My husband hasn’t been able to work either and we have had so much time together, proper quality time at home. We are getting the jobs down that maybe would have taken us a long time to get around to. I have the kids at home and I have the most wonderful friends. Even if we can’t see each other in real life, they are there. I am reading a lot, watching films and TV and I am doing a lot of art projects that make me happy.
And this whole experience has also made me and the husband reconsider what it is we want from life. What is missing from our lives and where we want to go. And we have both made a very big decision. But more about that in another blog!
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People ask me if things like this matter, and honestly they do. I started this blog seven years ago at a time when there were no bloggers talking about Crohns and Colitis or life with an ostomy. It was a scary thing to put myself out there and I love that there are now thousands of people talking about their health experiences.
I genuinely believe that sharing your story can change the lives of others and it is why I continue to do it.
So to be honoured with things like this feels like an accomplishment and it is just good to know people are still reading and enjoying what I do.
This year has been the toughest I have dealt with so far. This means that I have blogged a lot less than usual. The physical impact of my 9th major surgery was huge but even more so is the emotional toll it has taken on me. I have a love/hate relationship with blogging sometimes. I lose confidence in my writing and think why am I doing this? I hide my computer away so it isn’t a daily reminder that I am not writing and ignore it.
Then I pick it up and start to write and all those positive feelings come flooding back and Im like ‘Ohhhhh yes, this is it. This makes me feel better!’ Also every message and email I get from readers means the absolute world. To get a message saying I have helped someone through a tough time is the only reason I do this. So thank you to everyone who comments, messages or emails me.
Thank you Healthline for your promotion of me, especially to be alongside people like nation wide charity Crohns and Colitis UK!
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This week is Carers Week and I wanted to talk about the people here in the UK who are carers and the lack of support available to them.
Carers Week
Carers UK say: “Across the UK today 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill. That’s 1 in 8 adults who care, unpaid, for family and friends. Carers are holding families together, enabling loved ones to get the most out of life and making an enormous contribution to society. Many carers are stretched to the limit – experiencing poor mental or physical health themselves, finding it hard to make ends meet, struggling to juggle work and family life or having to give up work to care.”
Carers Allowance
Some carers can claim Carer’s Allowance, but this is the lowest benefit of its kind at £67.25 per week (2020/21 rates). It comes with many caveats including that the carer cannot be in full time education, cannot earn more than £128 a week from work and the person they are caring for must be receiving Personal Independence Payments (PIP), Disability Living Allowance (DLA) or Attendance Allowance.
You cannot usually be paid Carer’s Allowance if you receive one or more of the following benefits:
State Pension
contributory Employment and Support Allowance
Incapacity Benefit
Maternity Allowance
Bereavement or widow’s benefits
Severe Disablement Allowance
contribution-based Jobseeker’s Allowance
So those who can actually claim Carers Allowance are essentially ‘working’ for around 50p an hour (if they care for the minimum of 35 hours). Now, of course the carers are not doing this for the money, they are caring for a loved one. But why should their care mean they are financially disadvantaged? Consider that Carers UK say that carers save the economy £132 billion per year, an average of £19,336 per carer.
No support
But many, many more people care for their loved ones with no support at all. My husband and kids have cared for me for the past 7 years. I have had 9 major surgeries, months in hospital and I live with a chronic illness. They have had to do housework, do my laundry, cook for me, help me wash, take me to appointments, take time off work and study to look after me. Yet because my husband juggles to run his own business around caring for me and earns more than £128 a week, and because my children are in full time education, they get no financial support at all.
Over on twitter, Courtney Hodgkiss said “My husband cares for me, a significant amount more than 7 hours a day, but earns more than £100 week in his actual full time job because we can’t live on this pitiful amount of £. Full time carers need banded payments similar to nursing.”
Activist and carer Dan White said this:
It’s #CarersWeek these are my two beautiful humans that I care for 24/7
Millions of us are driven by just love & want to care
We don’t want a badge, we want equality in benefits & support both physical & mental
Young Minds say: “The BBC estimates thatthere are about 700,000 young carers in the UK. Being a young carer often means looking after a family member who is ill or helping them by looking after the other members of the family while they can’t. Young carers often do more chores than other children would. On top of providing emotional support to the person they are caring for they may also have to learn how to nurse them or look after their personal needs like bathing and dressing.
It can be hard work being a young carer. Sometimes other children don’t understand your responsibilities and you have less free time than others. Many young cope well with caring, especially if you have support from other family members and it’s important to look after yourself. You have the right to be looked after too and there are lots of places and people you can go to to get help.
It isn’t just about financial support either, what about practical and emotional support? Again, for people who aren’t ‘official’ carers, they can often feel there is no support at all. But even those who are a ‘registered’ carer say they often feel isolated and struggle physically, practically and emotionally. Regardless of whether you claim Carers Allowance or not, there is some support available.
In Sheffield, they have the website doyoucare.co.uk, take a look. They say “Chances are you already know an unpaid carer because 1 in 10 people in Sheffield cares for a family member. Caring can be practical: washing, dressing, collecting medication, cleaning, cooking, sorting out the bills, doing the shopping. It’s also often emotional: helping a person deal with their illness or disability, soothing their pain, fear, confusion, anxiety, depression and paranoia.
Caring can be rewarding, but it is also hard, unpaid work. Carers are more likely to struggle financially and have worse physical and mental health, than people who aren’t carers. In Sheffield, our campaign ‘Do you care?’ is brought to you by the two charities that support carers in the city: Sheffield Carers Centre and Sheffield Young Carers, with generous support from Sheffield City Council. We can all help carers.”
If you aren’t in Sheffield, then search for carer support in your home town. Citizens Advice have information here about being a carer. If you are looking for information about financial support, Carers UK have Upfront, a simple tool for carers who are new to the maze of benefits and entitlements. Fill in your details, spend a couple of minutes answering questions and they’ll guide you to the information you need. They can also offer support on the phone or by email and have a lot of information on their website.
They say: “Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email ()
We provide information and guidance to unpaid carers. This covers a range of subjects including:
Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions
If you feel you need help in these areas, or want to ask a question that might be helpful to you with your caring, please get in touch. We’re not always able to provide the same level of specialist advice by telephone as we can by email, so if we’re unable to help you in this way over the phone, we will tell you about other ways to get this support including guiding you towards other services and organisations that can offer support.”
Corona
The Corona Virus is having a huge impact on disabled people, ill people and carers with vulnerable people being told to self isolate for months and sometimes vague and ever changing rules. The government has published some specific guidance for carers of friends or family during the coronavirus outbreak. Carers are being told “If you are caring for someone who is deemed to be extremely vulnerable, take extra precautionary measures by only providing essential care and ensure you follow the NHS hygiene advice for people at higher risk.”
The Guardian reported last week that “There were almost 10,000 unexplained extra deaths among people with dementia in England and Wales in April, according to official figures that have prompted alarm about the severe impact of social isolation on people with the condition.” That social contact that carers give is so vital, it isn’t just about washing or feeding but the day to day emotional support and care they give, that can be completely life saving.
The Guardian article continues: “A survey of 128 care homes by Alzheimer’s Society reveals that 79% report that lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia. Relatives of those with dementia in care homes have spoken of their loved ones feeling confused and abandoned, stopping eating and losing the ability to speak.” The Alzheimers Society are currently running an emergency appeal to fund companion calls to people with dementia.
Campaigns
I added my voice to the Carers Weeks campaign to #MakeCaringVisible, you can pledge your support too.
Whether you are a carer, the person who is cared for or you just want to support carers in the UK, there are ways you can help this Carers Week. There are lots of ways to volunteer, donate or support Carers UK here. There are also a lot of campaigns you can get behind, including breaks and respite for carers, fairer financial support, parking for carers at hospitals and most recently ensuring Carers are taken into account within the Corona Virus Act.
What else can you do?
If you know someone who is a carer, reach out to them, say hi, ask how they are. If you can offer support, this could just be a friendly face to listen. I know that my husband wouldn’t describe himself as a carer. Despite the fact that he is and has been for years. He says he is just looking after his wife because he loves me. And this is true but it doesn’t stop the reality that he is under added pressure because of it. I can’t tell you how much we appreciate it when someone gets in touch with him when I am very unwell. That thought and kindness of checking in with him to see if he is doing ok is everything.
