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Archive for the ‘Everyday Life’ Category

A new solution for dry eyes

Thealoz Duo Gel eye solutionIt’s over 5 years since my last corneal transplant, because of keratoconus. Since then, the only major concerns my consultant has had is that my eyes are too dry, which can cause problems with graft viability. The more corneal transplants a person has, the less likely they are to be successful. I’m now on my second pair of transplanted corneas, so I want these to last me for the rest of my life. 

I’ve used HyloCare drops for many years, but my eyes are still too dry. On my latest trip to Moorfields to see my surgeon, Mr Romesh Angunawela his research fellow suggested that I try a new product called Thealoz Duo Gel. It’s preservative free, an essential for me, because of my allergies. The single-dose vials are fairly easy to use. The gel is quite viscous, so for anyone such as myself with arthritic hands, you need to squeeze quite hard to get all the gel out of the vial. 

The gel can be used at nighttime to keep eyes moist. I’ve been using it when I put in my corneal lenses, because my eyes are usually drier during the day. I squeeze the gel into my scleral lenses and then top up with HyloCare. This is certainly making it much more comfortable to wear my lenses for longer periods. I don’t need to add extra HyloCare during the day to keep my eyes moist and comfortable, which is a real bonus.

Beware, if you by these yourself there are two different products. Don’t get caught out like I did. In the gap between using up the prescription I got from Moorfields and getting them added to my monthly prescription, I bought some vials to have as a standby. I went on to Amazon and placed my order. The first time I used them, I could see they were not as viscous as the ones I had from Moorfields. On checking more carefully I realised I had bought Thealoz Duo Drops – NOT Thealoz Duo Gel. 

The drops are very similar to HyloCare, but as I need the Thealoz Duo Gel and have a good supply of HyloCare, I passed them onto my carer, who also has dry eyes. 

I’m pleased to have found this new product and am hoping when I go back to Moorfields for my next contact lens check-up, the specialists will detect that my eyes are now moist. When I take my lenses out at night, there is still fluid and gel on them. That looks like a good sign to me.

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Everyday Life, Hints & Tips, Medical

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Tick Bite Prevention Week

The red bulls-eye rash from a tick biteThis week is Tick Bite Awareness/Prevention week. According to Public Health England, 3,000 people contract Lyme disease each year, after being bitten by a tick. Early treatment is vital and can help to prevent secondary complications. Having a bull’s eye rash on the skin is a clear indicator for having been bitten by a tick. This happened to my good friend Dave, here is his story. 

Dave contracted Lyme Disease 30 years ago, when he was in his 20s. The cause, a bite from a tick when he visited the New Forest. Dave quickly became unwell with a high fever. At first he thought he had caught flu, but his temperature continued to rise and his partner took him to A&E. Fortunately a consultant there had a knowledge of tropical and overseas tick-borne diseases. He recognised Dave’s bullseye rash and temperature of 43°C with severe flu-like symptoms, as a tick bite. Dave was given several very strong antibiotics and 2 weeks later he left hospital. Little was known about Lyme disease in the UK back then. 

About 6 months later, Dave suffered from what he was told at the time was post-viral fatigue syndrome. He has to suspend work on his degree as he could only concentrate for 4-6 hours a day. He couldn’t play badminton or squash any longer and got tired after walking short distances. The symptoms were like ME. Dave recovered enough to return to his studies, but his energy levels never returned to normal. Now this would be recognised as Chronic Lyme Disease or Post-treatment Lyme Disease Syndrome (PTLDS). 

A year on, Dave developed psoriasis an auto-immune condition, which attacks the skin, causing skin cells to replicate every 2 to 3 days instead of every 28. His body was covered in very painful sores. Dave was admitted to hospital again for intensive treatment. This included coal tar, topical steroids, dithranol and UV light therapy. During this time Dave’s knees became very painful, and he was diagnosed with Psoriatic Arthritis. Over the next 10 years, Dave had 10 more hospital admissions for psoriasis treatment.

In 2001 Dave was diagnosed with type 1 diabetes, yet another immune system condition. He began to wonder if all these conditions were related. By this time Dave’s psoriasis was being treated by medication, but the treatments had very unpleasant side effects and one had. also caused liver damage. Two years on Dave fell down the stairs, dislocating his ankle and breaking his tibia and fibula. This required four operations and 16 weeks in plaster to repair. 

The trauma of this caused Dave’s first psoriatic arthritis flare. Almost all of his joints were affected. His condition was quickly diagnosed and Dave was fortunate in being able to have a new treatment, an anti-TNF Biologic drug called Etanercept. This was very successful, Dave’s psoriasis went into remission and his arthritis had stopped progressing. However, because of the amount of time he was having off work, Dave was forced to take early retirement. 

Sadly the Etanercept, stopped working after 6 months and Dave was moved onto Humira, which only worked for about 9 months. In May 2009 Dave developed Exfoliating Erythrodermic Psoriasis together with massive internal infections because of his severely compromised immune system. He needed 2 major surgeries to remove infected internal tissue and was in hospital for 7 weeks. 

Dave then needed 6 months off his Anti-TNF Biologic drugs, to allow his body to recover. Those 6 months were hell due to pain and the psoriasis. Dave begged his consultant to put him on a new treatment. He has now been on Infliximab for over 10 years and this continues to work well for him. Dave got diagnosed with fibromyalgia and sleep apnea more recently. He was careful to start shielding several weeks before the first lockdown, and he’s looking forward to being able to leave his home again soon. 

Dave’s story is, sadly, not unusual, tick bites can have devastating consequences. We now know much more about the dangers of tick bites and about Lyme disease, though there is still no cure. Dave’s advice to anyone going to the countryside is:

    • Be sure to wear long trousers
    • Tuck your trousers into your socks
    • Carry out a full body check once home or back at your accommodation
    • Carry tweezers or a tick removal tool if you go walking anywhere where domestic livestock or wild animals are present – you can buy one here 
 

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Everyday Life, Hints & Tips, Medical

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Reclaim these streets

32225863-DCEA-4250-8352-1F3CD0A65E2DThe abduction of Sarah Everard happened  2 miles away from my home. Clapham Common is literally just down the road. Having lived in London for many years, I’ve always been aware of issues around women’s safely. Also evey woman I know has had unpleasant experiences with either being followed or approached by strangers who wouldn’t take no for an answer. 

I was appalled at one of my local male councillors whose response to Sarah’s death has been to promote a petition asking for more lights on the common. Women don’t need more lights to stay safe, we need men to stop behaving in predatory ways towards women.

A couple of years ago I was persistently harassed by a male neighbour who either parked in my allocated disabled bay or blocked my car so I couldn’t get into it. One weekend he blocked the ramp to my flat, leaving me trapped and unable to go out. When I reported these incidents to the police, they did little other than to offer him ‘words of advice’, although he had ‘previous’ for assault. The abuse he yelled at me, threatening to hit me, was recorded when I had called 999 and although a friend had witnessed the harassment, I was told because she wasn’t an ’independent’ witness, no charges would be brought. 

I felt badly let down and my trust in the police was diminished. 

On Saturday night the very police, whose colleague was charged with Sarah’s abduction and murder, assaulted and arrested women who were paying their respects at her vigil. How can their actions be justified? Why use such disproportionate force? Why didn’t they engage with the women organising the vigil to agree how long it would last? Were they actually looking to deliberately enrage grieving women and arrest them? 

Two contrasting photos have been posted on Twitter. They were both taken Saturday, one shows police ’protecting’ male football supporters from opposing fans, the other showing a women at the vigil being violently pulled down to the ground and sat on by police. Why two such different standards?

One woman leaving Sarah’s vigil was flashed at on the common. She reported it to a nearby group of police. A female officer spoke to her, but as she was giving a description of the man, the officer was told by her male colleagues, “No, we’ve had enough tonight with the rioters.” Such responses don’t encourage women to report harassment. 

This must change. Women must be believed and supported when they have been harassed or been victims of domestic abuse. Most of all, education for boys should start in schools to teach them how to respect and support girls and women. 

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The connection between the Lake District & ready to use veg

 
Throwback Thursday 2

Please……. bear with me……. there is a real connection.

In January last year, The Times newspaper published two columns with distinctly ableist views. The first was on 5th January written by Jeremy Clarkson.

Clarkson is well known for his reactionary views on gender and sexuality, so I guess I shouldn’t expect him to be disability aware.

His article took issue with some comments from Richard Leafe who runs the Lake District national park authority. Leafe was saying that the area is not doing enough to attract black, asian and minority ethnic visitors. Leafe also said that there’s a similar issue with young people and those who are less able in terms of their mobility.

Whilst Clarkson’s main argument is anti-ramblers, his casual ableism about the idea of making an old railway line into a tarmac path for wheelchair users is just unacceptable.

Encouraging and enabling disabled people to use the countryside and outdoor activities means having enough car parking, properly designed and monitored, discounted prices for entry and routes that you don’t need a mini 4×4 to navigate.

The second column was published on 25th January, it was written by Carol Midgely, and titled ‘M&S peels and appeals to Britain’s lazy cooks.’

M&S prepped vegetables in packet

Sure, we all want and need to save the planet, but prepared vegetables are a must for many disabled people. Many of us cannot prepare vegetables or fruit, we need someone to do that for us. Those of us who are fortunate enough to have carers, usually only get them for a short time.

I was actually told by one Social Worker that I could never have fresh vegetables or any food that wasn’t cooked in a microwave as the carer would not have time to do anything else! No wonder I developed severe physical health problems and anaemia.

Having ready prepared fruit and vegetables can help disabled people have a balanced and nutritious diet. They are really important for us.

So Times journalists, before you diss the need for disabled people to access our national parks or buy ready prepped fruit or vegetables – stop and think – you are just one illness or one accident a way from being disabled. You might just be grateful for wheelchair accessible paths and pre-prepared fruit and vegetables one day.

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Scooter v Wheelchair – which to chose

342D81D3-0B22-443F-96E1-822AC749AE52It was International Wheelchair Day on 1st March, so I wanted to write something appropriate. 

One of the early decisions many disabled people face when they find walking too painful or difficult is whether to buy a scooter or a wheelchair. This blog post is not going to be about which make or model to buy. But will help you think about which of the two options is best for you.

Over 12 years ago I started off with a small scooter.  I was able with help, to take it apart and put it in the boot of my car. It also had a removable battery that I could take inside my flat to charge. It was very useful when I was going off to museums and galleries, places where the floor was even. But it was very uncomfortable on rough ground and definitely didn’t like steep inclines. 

But it was the reactions of other people that shocked me.  I was told on many occasions that I was too young to need a scooter!  This usually happened when I asked people to move so I could get past them. Other comments that hurt even more were; “You can’t really be disabled, otherwise you would have a wheelchair”. And “You just choose to use a scooter cos you’re too lazy to walk”. 

My scooter really helped to give my a greater level of independence. But as my spinal arthritis began to deteriorate, I found the seating on the scooter was getting too uncomfortable. I decided to ask for a referral for an NHS wheelchair. I was delighted to be told that I was eligible for one of medical grounds. However, because the property I was living in was not wheelchair accessible I was ineligible on accommodation grounds as they only supplied wheelchairs for indoor use! 

Sadly this rejection is all to common. Often when people are referred to Wheelchair Services – WCS they are not getting a suitable chair. For those people who can-self propel, it’s obviously easier to push in a lightweight chair. In the wheelchair groups I belong to on Facebook there are frequent posts from people who’ve only been offered a heavy chair, not the lighter one they need. Often they are told; “Your partner can push you.” That can increase a dependency that is often already fraught. Some WCS are now just giving people a voucher, which doesn’t cover the cost of the right wheelchair. So many of us are forced to apply to charities or set up a Go Fund Me. 

It’s disgraceful that so many disabled people cannot get the right wheelchair. Surely it should be a basic right for our independence? 

WCS are another part of the NHS which is now privatised. Hence the lack of funds and inappropriate equipment being offered. 

I was fortunate to be able to apply to a nursing charity for funds to buy my first electric wheelchair. The difference it made to my ability to get out and about was wonderful. I was able to go out for longer periods. The chair is much more compact and easier to manoeuvre in small spaces. I also have a deep memory foam cushion, which means I can sit for longer periods without pain.

But the greatest change for me was the attitude of other people. Once I began using my chair nobody ever queried my disability. Nor did anyone make inappropriate remarks about my need to use it. It even helped me to get a higher rate of DLA (this was the benefit before PIP). I had been on the lower rate for mobility for some years but my mobility has worsened. My first application for review was turned down. I appealed and went in front of a tribunal. I used my scooter at the interview and was promptly refused again. When I managed to speak about this with other disabled people I was told I should have borrowed a wheelchair and taken a carer with me! I wish I’d known that previously.

On my next DLA review I wrote about my wheelchair use and provided confirmation. I was awarded both components of DLA at the higher rate on a indefinite basis. I was so relieved. 

So for me a wheelchair is the best choice. I have friends who prefer to use one of the larger scooters and pay for it from their PIP. Whilst these scooters are very comfortable, they are very bulky. Having to leave them outside a shop increases the chance of them getting stolen too, especially in London. 

My one caution if you opt for a scooter – never buy a three wheeler. Why? They are inherently more unstable, and I have seen some appalling injuries when people have been tipped off them. There are lots of four wheeled scooters and even a five wheeled one available.

I hope whatever you choose brings you lots of freedom.

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Everyday Life, Hints & Tips, Medical, Politics

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Keep the £20 Universal Credit uplift

C9CBE7A2-8A96-45D5-9DA7-5ED41EC5EB12At the beginning of the pandemic, in April 2020, the Chancellor announced a £20 per week increase for almost 6 million people who claim Universal Credit – UC.

Because the government were aware that everyday food items were now more expensive, this £20 would help the poorest people to be able to afford to feed themselves and their children properly. However, he didn’t make the same increase for almost 2 million people, including myself, who are still receiving legacy benefits such as Employment and Support Allowance – ESA. There is no logic in giving to one group and not the other. We have missed out on over £1,000. Food, heating and other necesities still cost us more. That extra money would have made a real difference to people who have to make a choice between heating and eating. 

Now the government wants to take that uplift away. We are still in lockdown, and it will be months before restrictions end. Food and other everyday items are still going to cost more. There has been a suggestion of a one off £500 for everyone who claims UC. People who have to claim benefits need a regular reliable income. £20 per week for the next 25 weeks is a better way of receiving that money than a one off payment. 

Numerous charities including, Joseph Rowntree Foundation, support keeping the uplift. You can sign their petition here.

What else can you do? 

Disabled People Against Cuts – DPAC are having a Day of Action on 1st March to support keeping the £20 uplift and extend it to all disabled benefits claimants.

The Budget is happening on 3 March 2021, so you still have time to write to your MP asking them to support the retention of the £20 uplift. Disabled People Against Cuts – DPAC have a template letter you can copy. You can download it here.

To find out the contact details for your MP go to Write to them, put in your postcode and that will give you your MP’s email or postal address. 

There is also a poster that you can print and put in your window, as well as links to tweets that you can retweet. These are all on the DPAC website.

DPAC believes that the £20 uplift should be given to all claimants. I agree with them. 

Please support this campaign, even if this doesn’t affect you, by lobbying your MP you will be helping other people who need to keep on receiving the £20 a week uplift.

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Towards the end of lockdown?


FEC9738E-C6D1-4076-9488-52DFE7397102We are on the edge of a precipice. Yet this government wants to push us over the edge. According to Public Health England, over 110,000 people have died from COVID-19, 800 in the last week. There is a 7-day average of 10,000 new cases, and 21,000 people are receiving treatment for covid in the NHS.

The review of the lockdown and the consideration of reducing restrictions is already being touted by ministers. Boris Johnson seems determined to send pupils back to school at the beginning of next month and neither pupils nor most teachers will have been vaccinated. Surely that’s a high-risk strategy? Opening the pubs again in April can only lead to a further increase in covid cases. 

Yes, 15 million people have had their first vaccination, most of whom won’t get their second jab within the 2-3 week clinical guidance. They will have to wait 12 weeks for greater freedom. What sort of freedom? We don’t know as yet. We don’t know the vaccine efficacy with such long gaps. Even after my second jab, I’m going to be very cautious about where I go and who I meet. 

For many disabled people, lockdown is an extension of our everyday lives. We’ve only had more involvement in our communities because everyone else has discovered Zoom. We’re old hands at using it and have been eagerly showing others the way. 

Will we go back to crowded meetings in inaccessible halls? Will we suddenly find that unless we go somewhere in person, we cannot access culture or community events? 

We have been cocooned, safe in our homes. I’ve not missed busy, noisy shops. I’ve not missed overcrowded public transport. How will we be protected from those who refuse to be vaccinated? Will people still wear masks and observe social distancing? 

The scientists say that the lockdown needs to continue, but will the government follow the science? They’ve not done so until now. What would make them actually do the right thing for public health? 

Leaving home feels scary with such high levels of infection. If there were only 1,000 daily infections, or 50 deaths, or just 500 people in hospital, that would feel a great deal safer. 

The Zero Covid campaign seeks to persuade government to stop the cycle of repeated lockdowns and only lift restrictions when the number of new cases is close to zero. New Zealand, Taiwan, South Korea, Vietnam and China have all used this strategy.

If the U.K. had continued with the lockdown in June 2020 (when there were still 31,600 new cases of covid per week) and followed a zero covid strategy, we would not be in lockdown now and tens of thousands of people would still be alive. The Tories reckless strategy of focusing on businesses and profit, rather than people and safety, has blighted the lives of almost every family in the country.

The Independent Sage committee of scientists and the Hazards Campaign for workplace safety have both been advocating for a UK zero covid strategy. 

Figures quoted at the end of last year show that only 11% of people who were told to isolate by the NHS Track and Trace did so. This clearly shows why covid is continuing to spread. There must a financial incentive for everyone who is told to self-isolate. 

Extra economic support for those who are on low incomes and cannot afford to self-isolate is vital. There must be practical help for people living in overcrowded homes to self-isolate, such as hotel accommodation. The government should compensate everyone who has lost income because of the pandemic. 

All ports of entry to the UK must operate covid screening, and where necessary effective quarantine with further testing. The current chaos at airports must end, with passengers from high-risk countries separated out before passport control. 

As a nurse, used to ensuring staff follow infection control policies and procedures, to protect those we care for, all of this is common sense. I’m frustrated and angry that this government can’t understand the basics of how and why viruses spread. 

Yes, I know the economy is important, but so are people’s lives and their safety. Too many of my friends have already died. There will be too many memorial services to attend. 

The NHS waiting lists for surgery and MH services are longer than ever. Surgeries can be moved into the private sector. But that will not work for those people who need experienced psych support. Yes, there will be private services the NHS could access, but they will be quickly over burdened. They are also used to a very different clientele, with very different concerns. 

If you want to know more about the campaign, go to the Zero Covid website.


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COVID-19 Vaccination Day

Picture of a Covid vaccine vialI’ve longed for this day, but now it’s here, I’m exhausted and worried. 

Exhausted because it’s been months since I’ve left home and I’ve forgotten how difficult it can be to dress and get ready to go out. My partner had a Zoom meeting so couldn’t help me. It took 30 mins to get into my jeans – at least I hadn’t put on any weight – put socks and boots on and make sure I had everything I needed in my bag. Even though my coat was out of the wardrobe and ready for me to put on, I still struggled with getting it on. I had put my bag on the end of the bed and didn’t realise how near the edge it was. It fell to the floor, and I had to grab it from there. More exhaustion and pain. 

Navigating my chair through the front door and up the ramp to my car, I already felt tired. Would all this effort be worth it? Would I get my jab? The nurse I spoke with when I booked my appointment asked me about drug allergies. I have several, including one which resulted in a cardiac arrest, so she warned me that the PfizerBiontech jab may not be safe for me. I would need a doctor to assess me at the vaccination hub. 

It felt strange driving across London, with almost empty streets. Looking at the people, it was shocking how few were wearing masks. There was a huddle of a dozen young people outside a donut shop. No social distancing and only one person wearing a mask. No wonder the virus rates in London are so high. 

Arriving at the hospital, we got a parking space on only our second circuit of the small carpark. I got my chair out of the boot and we looked for signs to the hub. It was so long since I’d been at the hospital, I’d forgotten where the route to where we needed to be. Help from a staff member quickly set us off in the right direction. It was good that everyone inside was wearing masks. The corridors had barriers telling people to keep to the left-hand side, to ensure social distancing. Everywhere was unusually quiet. There were no wards on this level, only admin offices and outpatient departments. 

Going into the hub, the noise felt overwhelming. The babble of conversation and names being shouted out was disturbing at first. Everyone I could see was wearing masks. I’d not been in such a crowded space for over a year and have previously avoided busy, crowded places. Social distancing was down to one metre rather than two in the waiting area. The reception desk clerk was a solider, surprising as we were miles from the nearest barracks. 

Booking in was swift and easy. I was told that the hub was running 30 minutes late, so settled down to catch up on reading my emails. It reassured me to read a US research study that the PfizerBiontech had a very low rate of adverse reactions. 

Meanwhile, my carer was trying to book for his jab. His GP surgery had not given him an appointment. As a frontline care worker, he should have had his jab some weeks back. Eventually he got everything sorted, and it was then time for me to go through to see if I would get my jab. The medical area seemed crowded with little social distancing, except between the desks and between the injection pods. Staff were standing very near each other, as it was the only way they could communicate. 

I went through my medical history with a nurse, confirming my allergies and that I wasn’t allergic, as far as I knew, to any of the components of the vaccine. She appeared disbelieving that giving me lignocaine could cause a cardiac arrest, and she hurriedly went over to a doctor to check if I could still have the jab. Yes, came back the reply, I could, but would need to have my epipen available and stay to be checked for 30 minutes after getting the jab, rather than the usual 15 minutes. So relieved.

I quickly rummaged in my bag to find the epipen. Only to discover it wasn’t there. No idea why, as I always had it with me when going out. So many cafes and restaurants don’t label food or know ingredients properly. My nut allergy means I never risk being without at least one epipen nearby. I knew there was one in my car and signaled to my carer to ask him to collect it for me. I found it shocking that I needed to have my epipen with me. Presumably this meant that there was no adrenaline available in the hub. It’s in the middle of a large teaching hospital, A&E wasn’t nearby. Surely there should be some provision for emergencies?

Paperwork completed, I wheeled over to the pod, and the staff there moved everything around so I got some privacy. The person checking my paperwork queried if I was ok to have the injection. She misread my allergy information, thinking it related to one of the vaccine components. I reassured her and rolled up my left sleeve, ready for the injection. I couldn’t get my sleeve high enough on my arm so a medical student – the only person I saw with a name tag – moved it it to the right place. The nurse quickly gave me the jab. I got my sticker and my vaccine card, then was directed to the waiting area, having been told that someone would keep checking on me until I was ok to go home. I declined a drink and biscuit as there were no tables and my grip isn’t strong enough to manage both without dropping one. 

I pulled my phone back out of my bag and started reading again. 10 minutes later, no one had checked on me. There was a care assistant or cleaner who was doing the teas and wiping down chairs, but no other staff came to see me. 15 minutes later, still no nurse, 20 minutes later, the same. Luckily, I was feeling absolutely fine. I waited another 10 minutes and then asked the care assistant if it was ok for me to go before a nurse saw me. She told me I could go whenever I was ready, so I wheeled out to join my carer and go home. 

The journey home was quick and easy. I was feeling ok, but really exhausted and so pleased to have help to get undressed once I was back in my own space. 

As the evening continued, I still didn’t have any side effects from the jab, no headache, no sore arm, no fever or feeling unwell. I felt very relieved and so pleased that I will soon have some protection from this ghastly virus. I’m still concerned about this 12 week delay when the manufacturer recommends 3 weeks, but there is nothing I can do to change that time lag. 

In the meantime, having the jab means I can have clients visit me at home, which will really help those people who struggle with using the phone or Zoom. I’m not even thinking about going out. Even when lockdown ends, I’m still going to be very cautious about leaving home again.

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National Time to Talk Day – 4th February 2021

14051A45-8115-4BCE-8AB2-E60DE0A4DDFBThe aim of Time to Talk Day, which started in 2007, is to get everyone talking about mental health.

The pandemic means that conversations about mental health are more important than ever. Lots of people are experiencing anxiety and fear.

Many people, especially children, are finding the uncertainty of not knowing when schools will be open again very difficult. Others are worrying about their jobs or if a business they have worked so hard to succeed in will survive. 

Whatever someone’s situation, a small conversation about mental health can make a difference. The more conversations we have, the more myths we can bust and barriers we can break down, helping to end the isolation, shame and worthlessness that too many of us with mental health problems can feel.

So, reach out to a friend or family member you know who is struggling. A text or a phone call could really help them. Small acts of kindness or concern can make a big difference to someone else. 

Don’t forget that if you are feeling overwhelmed, you can reach out to your GP, local mental health services, or other organisations, and ask for some help. Here is the link for more information.

If you want to know more about this year’s campaign you can watch the live events or catch up on any you may have missed here.

At 6pm tonight you can tune in to Story time with Sophie Ellis-Bextor @sophieellisbextor on Instagram to hear her read Ruby’s Worries by author and illustrator Tom Percival. The picture book story follows Ruby’s journey as she tried to get rid of her growing worry.

In the meantime, why not watch the video about the campaign?

 

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Surviving the Election Result

Almost every disabled person I know is devastated by the UK election result. We had hoped for a socialist government that would not only end austerity but dramatically improve disabled people’s lives. 

We desperately need a new compassionate benefits system. We campaigned for the UK to sign up to the UN Convention on the Rights of Disabled People. We lobbied for improved and properly funded social care with a guarantee of Independent Living for disabled people of any age.

But none of those things look possible in the next few years. So how do disabled people prepare for the future?

As one of my wisest friends posted on her Facebook wall last Friday morning; ‘Don’t mourn, organise’. She is right, that’s the only way we can survive.

So here are some ideas:

Join your local disability group or Union

There will be lots of campaigning needed in the next few years. Being part of a supportive group is great for making new friends and finding other people who understand what you are going though.

All unions have retired members sections and Unite has a Community Section that in many areas throughout the UK has regular meetings and lots of activities and training. 

Up-skill

We can all use new skills – you can learn via your Union or via your local disability group. If they don’t have any training available, ask for the training you need. Learning more about how to claim ESA, PIP or UC is likely to be useful for you and for someone you know. It’s always easier to help someone else fill in a DWP form than do your own. 

Get a Benefits and Work subscription, it’s invaluable. They produce the best, easy to follow guides on how to claim. The first year subscription costs £19.95. If that’s more than you can afford, why not share the cost with a friend. A repeat subscription is usually 40% cheaper.

Help or support other disabled people

Whilst up-skilling can help you do some practical stuff around benefits, all of us have other skills we can share. Teaching crafts, passing on recipes, helping with internet skills, the list is endless. I’ve done genealogy for friends in return for a spare ticket to an exhibition I wanted to see. 

Think what you can share and what help you might want.

Focus on spending time with ‘your’ tribe

Friendships were made or lost over Brexit and the same is likely to happen over this election. It’s very difficult to find real support and true friendships amongst people with radically different political views and values. 

Choose your friends well, make sure they are positive people who can support you and won’t do you down or disrespect you. 

That advice applies to family members too! Ration your time with those who stress you. 

Practice self care

This is the most important way of looking after yourself. Be kind to yourself. Give yourself a treat – there’s so many sales on right now – you can treat yourself to some of your favourite bath or shower gel. Maybe you would prefer chocolate? If a special liqueur is more to your taste – cheers! Just don’t drink too much of it! 

If you are short of ideas – go look at Pinterest. Or join The Mighty a great community for disabled people, which has lots of great posts and ideas.  It might even tempt you to write your own post. 

Whatever you decide to do – be kind to yourself and others. 

Wishing you all a happy festive season! 

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Everyday Life, Hints & Tips, Mental Health, Politics

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