World Down Syndrome Day

Thursday 21st March is World Down Syndrome Day, a chance to raise awareness of what Down Syndrome is, what it means to have Down Syndrome and how people with Down Syndrome play a vital role in our lives and communities.

I feel blessed to have met so many amazing people with Down Syndrome who have brought me joy, made me laugh uncontrollably and just made me forget about any issues or worries I may have been experiencing at the time. It is a pleasure and an honour to spend time in their company, they have so much to offer.

Fellowship

Yet, in some countries people with Down Syndrome are seen as a problem and a burden. In Iceland, a country which for me gets most things right, expectant mothers are told if their baby will be born with Downs. At this point the vast majority of mothers chose to abort their babies which means that Down Syndrome is very close to being ‘eliminated’. The number of similar abortions on the UK is also on the rise

I’m not going to comment on the issue of abortion but I do know that ‘eradicating’ Down Syndrome is wrong and heart breaking. You wonder how balanced the advice from the medical professionals is. I have spoken to the parents of children with Down Syndrome and yes it is incredibly hard work and you’re having to battle a system that is not set up to help you but looks to put barriers in place. But, at the same time these are people with dreams, with potential, with feelings, with talent, with love – so much love.

We have been sent reminders over the last couple of days from New Zealand and today from Holland that the world can be a truly dark place. I want to finish today’s blog with some uplifting video’s to celebrate some amazing people.

Don’t stop me now

1000 miles

A reunion

So on Thursday rock your socks and celebrate this amazing community of people x

https://www.worlddownsyndromeday2.org/event/lots-of-socks-2019

Find your Voice

I’ve got to admit it – I’m worried, and I’m not the type to get easily worried. I’m worried about what will happen to the UK at the end of March if we leave the EU. I’m worried about what kind of country we are becoming and what values we are attaching importance to. I worry about my kids future, what kind of world are we leaving for them and future generations, are they going to be able to get jobs, are they going to be able to get their own property (I bloody hope so)? I worry about the rise in knife crime and so many young lives being lost as a result. Then I worry about me – am I doing the best I can, have I reached my potential, could I be doing more?

It’s so easy for these thought and feelings to become overwhelming. I’ve been in that place where I think the answer is to block everything out, to switch off, to not care. It’s not a good place – and the thing is, I do care, I care deeply. I worry about the state of the country but I also get angry and motivated to do something about it. There are lots of causes that I’m passionate about and want to raise awareness of.

I’ve always found it difficult to give my opinion and to say what I want to say. I’m a classic introvert and that’s fine, I’m comfortable with who I am and I’m not going to change to fit someone else’s perception of how I should be. Social media has given me a voice and the confidence to say what I want to say and to give my opinion. If you follow me on Twitter (@jimbobity hint hint) I will give my opinion on a range of subjects and topics. At first I hated being challenged but now I have the confidence to know that there are other people who will agree with me and back me up. I don’t mind getting into a debate with people who disagree, you quickly find out who you can have a healthy discussion with and who is so entrenched in their views that there is no point wasting your time and energy. The confidence that I have developed through Facebook and Twitter gave me the belief and confidence to start my blog.

I’m not naïve enough to believe that I’m always right, I enjoy being presented with opposing points of view that challenge my point of view and I’m happy to admit when I’m wrong.

I mentioned that social media has given me a voice and the confidence to make it heard but it has also given me the confidence to break out of the social media bubble and to start to campaign for different politicians and causes. I am a trustee for a fantastic local charity JpcCommunityFarm. This came about through getting in touch with the people behind the charity through social media first and sharing my passion, knowledge and experience. I would never have had the confidence to do this face to face or in a group. I would immediately believe that there would be someone who would be better than me.

For the past 4 weeks I have given up a couple of hours on a Saturday morning to speak to people in local towns about Brexit and to try and get support for a second referendum. It’s been interesting and there are some people who are not afraid to voice their opinion but on the whole there has been lots of good discussions and it’s good to be with like minded people. In a couple of weeks I’m planning to go to London to march alongside many other people who believe strongly in remaining in the EU. It’s something that feels scary and exciting at the same time – I’ll let you know how it goes!

Has social media led to you getting more involved with particular causes and groups? Let me know x

Strength

How strong would you say you are? I’m not talking about physical health, how much you can lift, how far you can run, how many push-ups you can do. I’m taking emotional strength, bravery, resilience.

I’m typing this at the RVI hospital in Newcastle. I’m with my step-daughter who is waiting to go for her umpteenth scan. She has a very rare bone condition called Fibrous Dysplasia. It’s basically a benign growth which attaches itself to bones. This one happens to be on her skull and near her brain so she needs a lot of hospital appointments and monitoring to make sure that Mildred (the name she has given her bump) doesn’t grow and that Mildred doesn’t get any brothers or sisters!

I’ve just asked Rachel if she would class herself as brave. She laughed and gave an immediate no. If bravery is classed as how well you can cope with spiders, or strange noises or being alone in the house or many, many other things then she probably has a point – she’s a wuss!! I then asked her if she would describe herself as strong. Her answer was just as emphatic – a yes,  followed by “I never used to be”. It’s true I have seen her develop an inner strength and resilience that despite living in pretty much constant pain has got her through her GCSE’s and starting A-levels. She has just started driving lessons and is planning the next important stage of her life. She decided a while ago that Mildred wasn’t going to beat her or stop her or slow her down. Sure she has bad days but she is strong, very strong.

I’m surrounded today by strong people. In this hospital people will receive news that will turn their lives upside down, news that means their lives will never be the same again. I’m sure from somewhere they will find the strength to process this news and to start to plan their recovery and rehabilitation. It may not happen straight away but it will come. Their families and loved ones will develop a strength and resilience to support them and be there in an hour of need. On a more positive note some people will receive the news that their struggle is over and that the strength they have develop has helped them back to health. The other very string people in this building are the doctors, nurses, hospital staff who provide comfort, reassurance and hope. Sometimes this just comes from a smile, a funny story, a joke.

In my life, I’ve had to find the strength to deal with my own physical and mental problems. I’ve also had to find the resilience to deal with setbacks, with bad news and then find the resilience and strength to be able to help others. If I can find inner strength, anyone can. I truly believe that we all possess an amazing amount of inner strength and sometimes it’s the strongest who get challenged the most.

If you’re sat there and you don’t think you’re strong, if you don’t think you can cope believe me you can and you will find a way. In many ways I hope you don’t have to find out just how strong and resilient you truly are! x 


Nothing, Zilch, Nada

This week I’ve got nothing to write about. Believe you and me I wanted to be a bit more inspirational and inspiring than that but it aint happening this week!

Don’t worry I’m not in a bad place, stressed out or struggling to focus, quite the opposite really. I like to write my blog at the same time each week so in the couple of days leading up to it I start to think about subjects I want to write about and start planning things in my head. It got to today and there was still no flashes of inspiration, even taking the dog for a walk which usually helps failed to deliver any meaningful ideas.

So I thought  – sod it, what’s the worst that’s going to happen if I don’t write anything this week? My blog will still be there and I’d rather not write something just for the sake of it.

Once I reached this conclusion, I instantly felt calmer, more relaxed, I wasn’t panicking about getting my thoughts down. AA Milne was right. There is a value in doing nothing – I’m an expert in it and today served as a reminder! So much so that it inspired me to write about nothing!

If something is causing you too much stress and anxiety, take a break, move away, do something that helps you switch off. Or literally – do nothing. Find a quiet space, chill, and empty your thoughts. Think about when you’re on holiday, how good does it feel to switch off, lie on a beach and chill. Take mini holiday’s in your mind and see where it takes you.

Hopefully next week I’ll be able to write about something but today I’m pleased to be able to offer you nothing! x

Feeling the Love

Ok – I’m going to go there this week. Do you ever find yourself pondering about the meaning of life and wonder, what’s this all about?

I used to, until the penny dropped a few years ago and nothing has happened to shake my belief. It’s love – it’s got to be, hasn’t it? For me, a life without love has very little meaning. Once you open yourself up to receiving love and being able to give it unconditionally, your life starts to have more purpose, you begin to realise what we’re all here for, to use this wonderful gift for good, to make things better for those around us, to help us get through some challenging times and to help us grow.

Love can come from many sources, your soul mate, your family, your best mate, your pet. In fact animals are the best at giving and receiving love. I know that it doesn’t matter what kind of day I’ve had my dopey dog will be there at the door, wagging his tail and so pleased to see me! All he asks for in return is to be fed, walked and have a bit of a fuss and attention now and then!

I admit love can be scary, making that commitment and saying the words takes a huge amount of courage and sometimes it isn’t always requited. Believe me it becomes easier as you get older and you learn from mistakes and experiences. In some ways it’s a good thing that love can be scary. Love can be so powerful that saying it without commitment or meaning dilutes the impact both for yourself and for the person receiving.

When I was physically and mentally ill in 2017 it was messages and examples of love that were as powerful as any medication. Knowing that I had people who loved me, who wanted me to get better and knowing that the people I loved needed me was massive and got me through.

So we’re now into February, the month of love. If you’re in that amazing place where you have a soul mate, (and again, it doesn’t have to be human) make sure they know how you feel, say the words. Life will instantly become a little bit better – I promise! If you’re not in that place yet, enjoy the journey, live and learn. The destination is beautiful!

As usual, I would love to hear your thoughts x

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Mental Health at Work

Last Thursday there was a massive step forward in recognising that mental health should have parity with physical health in the workplace.

Thanks to the excellent #wheresyourheadat campaign, led by the brilliant Natasha Devon a petition was launched which collected over 200,000 signatures. This was more than enough signatures to trigger a debate in parliament which took place last week. See – that’s how democracy and parliamentary sovereignty can work, we’ve always had it! Ok – no more Brexit talk this week! The outcome of the debate was that MP’s from all sides agreed to back a motion to introduce legislation which would put mental and physical health on an equal footing through first aid regulation.

Still some way to go but this is a big step forward, it now seems a case of when not if this will happen. The campaign has been backed by major businesses, mp’s from across the board and members of the public. I know that progress is being made and that a lot of employers are taking mental health at work seriously. But imagine if this became enshrined in law so that nobody got left behind.

Hopefully it would mean phrases like, “pull yourself together” “man-up” “get over it” become phrases of the past Every employer has to have a physical first aider, under the legislation employers will also have to have a mental health first aider. Somebody trained to spot the signs for when someone maybe struggling and for people to go to when they’re feeling unwell. Makes sense doesn’t it! From an employers point of view it should help reduce sickness, increase productivity and all that guff! More importantly it will hopefully give more employees more confidence to admit that they’re struggling knowing that they’re going to receive help instead of suspicion.

MHFA England were also behind the #wheresyourheadat campaign. They are a fantastic organisation who deliver training to staff on how to be a mental health first aider among many other things. MHFAEngland

I attended the 2 day course at the end of 2017 and can highly recommend it. I was at a stage in my own mental health journey where this course helped me immensely and gave me some tools and the confidence to be able to help others.

After the course I wanted to give something back and so I wrote a blog for MHFA explaining how the course had helped me and to encourage others to attend if given the opportunity.

Somethings a chat is all it takes.

What are things like in your workplace? Could your employer be doing more or is there good practice taking place that deserves to be shared?

Final word, if you are struggling please get help. I know it takes strength and courage to ask for help at a time when you’re not feeling particularly strong or courageous but help is always there. I’m more than happy to help point you in the right direction. Feel free to message me or get in touch.

Take care x

Conflict and Compromise

Have we forgotton how to compromise? I’m using a very general “we” some of you may be brilliant at it.

I ask the question because our brilliant, diverse country seems more divided than ever. It seems that when it comes to certain tissues you need to pick your side, hold and defend it with everything you’ve got even when presented with evidence that completely contradicts your point and destroys your argument.

The most obvious example of this is Brexit. You’re either a Leaver or Remainer. I’m desperate for us to stay in the EU, I’ve campaigned for it, taken part in marches, emailed people, signed petitions, joined groups, tweeted, facebooked the lot. For this I’ve been called a traitor, libtard, snowflake etc. On the other side side I’ve seen leavers called thick, un-educated, racist, gammon, the lists go on.

The country is split and divided more now than I can remember for a long time. Some people were triggered last week because Greggs introduced a Vegan Sausage Roll! I was hoping that 2019 would be the year we started to come back together. Unfortunately I’ve seen no sign of this, I fear that things are going to get much worse before they get better. When Jo Cox was murdered you would have hoped people would have learnt from that awful tragedy. Instead can anybody confidently predict that something similar won’t happen again soon.

So  – how do we come back together? It’s got to be by compromise, surely? Look back through history, how are disputes settled when there is no clear winner? They’re resolved by settlements, by each side giving a little in order to feel like they have still gained something. Think about when you have had an argument with a loved one. How did you resolve it? Compromise is not a sign of weakness, it’s a strength. It demonstrates that you’re prepared to listen and accept that the other side may have some vaild points and grievances. That can take courage.

Going back to Brexit , the unfortunate thing is one side will eventually “win” and there is going to be a lot of unhappy people. I guess what we have got to do is stop the name calling and the confrontations and the assumptions about what type of person is a remainer or leaver. I accept that people voted Leave for lots of different reasons and they do have some valid reasons. Having said that, if you voted Leave because you don’t like foreigners or people who have different coloured skin please don’t read this blog or follow me. What we need to do is look at the reasons why people felt the way they did when they voted and start to do something about it. If not, we learn nothing and we remain divided. When this is over there will be no winners, not really. So I hope that there is no gloating or posturing. There is so much work to do to bring us back together. Just remember what it was like when the 2012 Olympics were on. That is the country I love and am proud of! 

Knowing that is what this country is capable of gives me hope that we can get it back. We all have a part to play but the press and politicians need to start telling us the truth. If you’re struggling to know who to trust and who to believe, stop and think – what’s in it for this person, what have they got to gain from holding this point of view. It works for me!

On a more positive note my blog received it’s first award from another blogger at the weekend! It made my day, knowing that people are reading this and taking something from my blogs is massive to me.

I would love to know what you think of today’s blog and if you have any examples of when you have had to compromise in order to get an outcome. I would also be happy to try and answer any questions you may have about Brexit, I’m getting slightly obsessed!!

Take care x