Thank you Sweetheart.
As Valentines Day comes around, there's no better time to thank the love of my life. My soul mate, my best friend and my full time carer, he helps me daily live with my disabling disease ❤
Who can you thank today?
Hope you're all keeping really, safe and positive!
I just saw this on FB. Are people in the UK generally aware of this consultation? I wasn't haha, but let's all try to contribute and share everywhere we can! Let's effect change in our society 💜
The survey will be open until 23 April 2021. Responses received before 13 February 2021 will inform the development of the National Strategy, while those received after this date used to inform its delivery.'
'The Disability Unit at the Cabinet Office is developing a National Strategy for Disabled People. Publication is planned for Spring 2021.
To help the government with understanding the barriers that disabled people face and what it may need to focus upon to improve the lives of disabled people, we need to hear about your views and know more about your experiences.
This survey will ask about your life experiences either as a disabled person, a carer or parent or as someone who has an interest in disability issues.
Many people have had big changes in their lives as a result of the COVID-19 pandemic and there will be an opportunity at the end of the survey to state if your life has changed notably due to COVID-19, and in what ways. However, please answer other questions thinking about yourself, your own experiences and your current situation.'
#Fibromyalgia #ChronicPain #ChronicFatigue #Depression #Anxiety #MentalHealth #IrritableBowelSyndromeIBS #AuditoryProcessingDisorder #Asthma #BackPain #Disability #Insomnia #Agoraphobia #carers #HardOfHearing #Psoriasis
#carers . I’ve recently become carer for my husband of 45 years. His health has declined steadily over about the last decade. He’s never been an easy man, impossibly high standards & very judging & critical. He is a decent person however & I care deeply for him, although I have a lot of unresolved resentment simmering away in my heart. So many times he’s hurt my feelings over the years, generally a blatant lack of consideration forr my happiness has always been the way I feel. Trouble is that now he’s done so much damage to himself & continues to, even tho he has managed to do irreparable damage to all of his major organs. He is so unwell now that it’s almost like caring for a 3 year old & he’s just as non compliant, refusing to try & help himself. I’m so over it, I’m not well myself & among other things don’t sleep, so constantly battling exhaustion. But still having to tend to his considerable needs. It’s becoming very difficult for me to cope & now I feel like an awful person for resenting it so much. Am I selfish for looking forward to an easier life after retirement & then everything changed, I feel like I’ve been robbed. #carers #Husbands #Retirement #shattereddreams
Here is another one of my articles and rocks that are on Instagram and love on the rocks. I said I'd share ones that are the "big" issues" and this is one personally important. So here is what I shared.
Today's rock is very special to me. I've done carers as a whole to cover home carers, care home staff, I did touch on this group. The thing is it's carers week this week. There are according to 2011s last census 184.108.40.206 million people that provide unpaid care for people, that's believed to have grown to 220.127.116.11 million today. They save the government in care costs £132 billion a year.
So why am I doing this after the other rock? Well firstly it's as a said carers week so it's a great time to highlight the work these guys do. Second they aren't designated as keyworkers, yet any other person during this crisis providing care is which in itself is something worth highlighting. Finally as I said it's personal and I'm going to highlight there work with mine and my husband's story.
I require alot of help that any carer would give. He has to help dress my lower half and on bad days the upper, he helps with all personal care and the with getting food. We have a georgous son who he then does everything a Dad does. He helps get me up and downstairs although we are thankfully getting a stairlift soon. Often with degenerative conditions like mine carers are stuck during these phases suffering themselves with backpain. He brings all crafting, school, and general fun activities to me so I can just be a Mum and this is so important to me. He spent ages getting a heavy electric wheelchair in and outside with no ramp, and waiting for the change in circumstances. He helps with my physio with hurts and he says goes against every instinct as a husband. I suffer from regular blackouts so if he goes out he has to find someone to be here.
Now that is a snapshot of a carers life, I am lucky we have a lot of love, sarcasm and laughs along the way but I won't lie the change and redefining of your relationship is hard going. It's also not just husbands and wives, carers can be friends, boyfriends, girlfriend's, fiancees, Mum's, Dad's, brothers, sister, son's or daughters. Then there are young carers I said son's or daughters and looking after adults, a child looking out for a parent is also very normal.
This lockdown has made things harder for carers. The support of friends that come to help. Breaks simply we have of my son sleeping a couple of nights away gives my husband one less things for 2 days. Then he uses Andy's groups which is men supporting men, that hasn't been possible.
So all I can say today to you amazing humans from us that you care for is I'm humbled by the love, kindness and support. #carers #RheumatoidArthritis #Fibromyaliga #PTSD #MentalHealthHero
I had to share this
This message popped up on my private group. I asked if I could copy it and share it. They said with pressure.
This is how I felt when I worked in the female establishment.
Stay safe wherever you are. Remember you are loved and you are not alone ❤❤❤❤❤
#Love #NeverAlone #MightyTogether #carers #NHS #HealthCare #Prisonofficers #Loved #RareDisease #Bekind
Are you a carer for others in your family? Maybe you’ve suddenly found yourself being surrounded by little people who demand attention every waking moment in the midst of coming to terms with the unknown future you hold? This is for you…
Hidden in the depths of our heart is a little question that sometime jumps out and surprises us but we try to keep it under lock and key, taking control.
Its mostly quiet, but sometimes its loud and demanding and occasionally it screams for attention. It can sound helpless, hopeless and weak. Its honest and real, but we’ve been told its selfish. Not by anyone in particular, but by the silent voices we carry within us – past relationships, family values, stories and movies of sacrificial heroes. They all build a moral code within us of whats right and whats wrong. Yet still, as carers, consumed with caring for others and overwhelmed by the needs around us, we have this little question lurking within… ‘What about me?’ I have images of a 5 year old having a tantrum, stamping feet while shouting ‘What about me?’ The truth is, that question doesn’t disappear. We just learn to reason with or shut down that inner child. When we find ourselves in a situation that demands more than we can give, that question can bubble up inside and it becomes harder to reason and control the emotion driving it, so we shut down feeling altogether and get on with it. There’s a problem with that coping mechanism though – we shut down our ability to experience the fullness of joy.
Be kind to yourself. You matter and feelings are important. They are often what drive us, even subconsciously. Take five minutes or longer if you can (set an alarm and get up before the rest of the house). Allow yourself to hear that question, really hear it and take time to grieve what you have sacrificed and the hopes and dreams you had that will never be. Its ok to be not ok. Grieving is a process that takes time. It ebbs and flows and the tide can come in unexpectedly but you soon learn how it flows and you discover its safe to paddle on the beach again. Life may look different to what you had hoped for but that doesnt mean you cant find new hope and new dreams. Go on, ask yourself, ‘what about me?’
The moment I embraced that question and honoured it with my time and attention, was the moment my outlook and life began to change. The shortest verse in the bible helped me to see that grief over circumstance is normal. ‘Jesus wept’ (John 11:35) and boy did I weep. Its been a process, but I’ve found new hope, new hobbies, new time and as a family we are rediscovering joy and happiness. So go on, weep, let it go and let it out. Then rediscover you, right in the middle of the circumstances that tried to silence you and hold you back. Dream. Hope. Believe. #Hope #mental health #carers