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Archive for the ‘Hints & Tips’ 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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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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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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5 More Ways to Survive being Disabled

Logos.jpgSome more useful ideas

6 Use or Loose

Use your previous skills to enhance what you can still do. I gave one example in the previous blog post about being organised and thinking ahead. Those were two skills I leant and enhanced throughout a career managing nursing homes and charities. I gained computer skills over 30 years ago and am still learning. I’ve taught others to use social media, basic spreadsheet knowledge and how to manage databases, all from my bed. 

My carers keep everything tidy and my bedroom has all my computer kit and books to hand. People are taken aback at first, but soon understand when I explain that lying in bed reduces my pain levels and enables me to do more.

7 It’s your pain

Only you know what you can and can’t do without being in pain. It’s your pain – no one else knows how bad it is. Pain is telling you something, it’s telling your body to stop. Listen to your body, learn what triggers your pain or muscle spasms. When your body says stop, take notice. 

Please, don’t be bullied by professionals who tell you differently or that you are not trying hard enough. It’s your body – not theirs. I know there is a theory of breaking though a pain barrier – but you are not an elite athlete!  Treat yourself and your body carefully. 

8 Learn who to ignore

Find a way of dealing with the idiots who will ask you stupid questions. For me this is difficult, I have a low idiot tolerance level. I’m also very good at thinking up an answer 5 minutes after I’ve turned away from the idiot in question. I’ve had senior doctors ask why I’m using a wheelchair, judt because they didn’t look at my notes properly. 

I have several different medical conditions which mean I need to use my chair all of the time. When I’m asked what’s wrong with me by a non-medical person, I usually quote the two main reasons, then say, ‘But there’s several others too…….’ the look on the other person’s face usually means I’m kind to them and say nothing more. However I have friends who will respond to that question with ‘………and why have you got such bad dress sense?’ It works for them, I’m not so brave. 

9 Ask for help

One thing that disabled people know lots about is disability. Whether it’s dealing with pain, how understanding how your local Social Services work or getting a good wheelchair. Through years of experience and learning the hard way – we have lots of knowledge and most of us are really happy to share it. It’s the same when choosing a GP or knowing which care agency actually cares. Don’t be afraid to ask. If we know we will tell you and if we don’t know the answer, we’ll probably know someone who will. 

Know the websites to use, Benefits and Work, for everything you need to know about DLA, ESA, PIP and more. Turn to Us, Benefits eligibility checker and great advice on where to get more help. Radar, the best site for finding out your rights.

10 Be an expert

Understand your condition and the effects it has on your body. Understand your medications too and learn about interactions. For some people being part a local group with a national organisation is brilliant. My friend Val who has MS really benefits from going to her local group and being part of the MS Society. You may just want to get a regular newsletter or magazine and know there is a helpline if you need it.

Know your legal rights – if you live in the U.K. – the Equality Act 2010 is the main legislation to understand. If you are in the US it’s the Americans with Disabilities Act 1990. 

If you are able, campaign in some way to change thinking and attitudes. I do and through that I’ve met a great bunch of people and we support each other too.

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5 Ways to Survive Disability

Coming to terms with being disabled is never easy. As a disabled person, it hardest for you, but it can also be hard for family members to recognise the reality of your new life.

I am also aware that some disabled people never seem able accept the life they now have. They just don’t want to make that adjustment. All I can say is, only when you accept your disability will you be able to move forward and decide how you will live your life in the future. This what I have learnt so far:

1 Your life is not over

It is just  going to be different. You have to adjust, but you can and will find a way of living well and of still doing things you enjoy. Be open-minded – you will be surprised how much difference that will make to your future. 

As my partner had just reminded me – having fun is important. Try watching a movie at home with ice cream & popcorn. Why not go to a local cafe where you can taste a new dish? My favourite activity is a trip to an art gallery with a scrumptious tea afterwards. Find something fun to do at least once a month.

2 Beware the Myths

Someone will always tell you of a miracle cure – or say you haven’t prayed hard enough. I do not believe either of those statements. You will have your own religious or spiritual take on such advice. As a child I was taught “God does not give us burdens we cannot carry”. But that isn’t true for everyone either. (For the record I’m Jewish and do believe.) Finding a way to acknowledge the advice of others, without following it is a skill worth learning.  Be firm, to protect yourself.

3 Be Organised

Being disabled requires super organisation – plan ahead and save energy for the things that matter to you. People often marvel at what I manage to do within a day. Part of how I achieve that is by planning ahead and thinking though what I don’t need to do, so I can achieve the things that really matter to me. I use lists and reminders. I use my wheelchair to carry things from one part of my flat to another. I save energy as much as possible. Never stand when you can sit, never sit when you can lie down.

Getting dressed is tiring for me – so I never change clothes more than once a day and often not until I’m going out out. If someone thinks I’m lazy, that’s their opinion, I know differently. Putting clothes away and sorting laundry is even more exhausting, so that’s always a job for my carers. Little things can make a big difference.

4 Get some practical help

If you can get a good care package from your local council, go for it! It may take sometime to get everything to settle down, but persevere, it’s worth it in the long run. If that is not an option, a small amount of paid help of some sort will make life easier not just for you – but your family too. You might also be able to rent out a room in exchange for some care services. Explore options, be creative.

5 Having a purpose in life is important

Especially so when you are disabled. I see it as being both therapeutic and necessary. Maybe it’s writing a blog like this one. Maybe it’s sharing a skill. Find something that really matters to you. Even if you have multiple restrictions, by doing just one thing you will have achieved something important for yourself and for others.

I manage a two websites, four Facebook pages and three Twitter feeds, for local groups, all from my bed!! It doesn’t earn me any money, but for me what’s more important is I’m contributing to causes I believe in.

 

 

 

 

 

 

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A card to prove you’re disabled

Access to venues without the hassle

Have you ever turned up to a theatre or exhibition and discovered you needed documentation to prove you were entitled to a discount?  I certainly have and am sure so have most disabled people. 

Now that problem is solved by Access Card.

This card verifies that you are disabled and in most cases are in receipt of a disability benefit such as DLA or PIP. If you do not get these benefits there is plenty of space to explain your disabilities on the form. It is also possible to download a paper copy of the form and send it in by post.

I’ve just filled out my application on-line and it was relatively easy.  Though I did have some difficulties. There seemed to be no way of moving from one box to the next to input my name and address details. I had to keeping hitting the next button at the bottom of the page which was annoying.

You will need to have a copy of your benefit letter, a copy of some photo ID and a separate photo for use on your card. All of there were easy to upload on the the Access Card site. 

Now I have to wait for my card and I’ll update this post when it arrives and I’ve used it.

 

 

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Petrol Pump Grip

An must-have gadget

One of the things I find quite difficult to do is refilling my car with diesel. Holding the trigger on the fuel pump requires a better grip than I have and it is also very painful.

Not many petrol stations in London have someone who will come out and assist you & I don’t always have a passenger who is able to help. When I do have someone with me I usually ask them to take my purse and pay for the diesel, as often the pay point is too far away for me to walk to.

Recently, through a disability magazine, I came cross PumpPal. 

A neat little gadget that you twist around the pump trigger and allows the car to be refilled quickly and easily. It’s a real boon for me and I would recommended to anyone even if you are not disabled.

It comes in four colour ways and can be bought directly from the manufacturers. Mine arrived very quickly & I wouldn’t be without it.

 

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Patches for Pain

I started taking regular pain killers many years ago, as it was the only way I could control the pain that wrecks my body.

I fought against being dependant on painkillers for a long time, but eventually had to come to terms with the fact that the only way I could control this beast was by regular analgesia.

I tried acupuncture, relaxation, mediation, even cannabis (kindly given to me by the boyfriend of my then flat-mate) but nothing worked well enough to reduce my chronic pain. Eventually my GP suggested I attend a pain clinic, the consultant was very good, recognising my professional background and knowledge, he felt that the only option I had was to try morphine patches.

Deep down, I knew that was what he would tell me. I hoped he might be able to give me details of research outcomes of long term use – I was only in my early 50s at that time – but none was available. Despite this, I decided I would try the patches. I’m really glad I did. They really have made a big difference to my daily life.

The morphine has helped not only with my pain, but also with muscle stiffness. It is not a cure all, I still get pain if I stand for more than a few minutes, try to lift anything heavy or sit in my wheelchair for more than a couple of hours. At times I need to a take top-up Tramadol for break-through pain, especially in cold or damp weather but for much of my day my pain is bearable.

However, I’ve learnt four things that I want to share as I hope they may help others

Always have a spare patch…….

and carry it with you at ALL times. I learnt this the hard way. About a year after I started using morphine patches, I was enjoying a day out with friends when I slowly became away of my pain increasing and feeling very strange. When I went to the loo, I discovered to my horror that my patch was almost off and that it had folded over and stuck to itself!

There was no way I could unstick it. I was several miles from home, and didn’t feel safe to drive. Luckily one of my friends, another nurse, was able to drive me home. I can’t remember much of the journey as I felt a sense of unreality and as if I was going in and out of a series of tunnels.

Once I was home I quickly put on a new patch and climbed into bed, still feeling very out of sorts. My friend told me that I was experiencing morphine withdrawal and gave me much much reassurance that once the new patch had started to work it would soon recover, she also advised me to take 10mg Valium (I have a prescription for occasional use if I get severe muscle spasm in my back) to ensure I slept whilst the new patch was getting into my system.

The next morning I work up feeling fine, and much wiser.

There is now always a spare patch in my bag!

Take spare tape as well

Occasionally a patch came can become unstuck at the edges. Sometimes this can happen if skin is not completely dry when the patch is applied, or if I’m wearing really tight trousers which rub at the patch and cause it to come loose. Just using a strip of tape, can save the day and help the patch to re-attach to my skin. My tape of choice is 3M Transpore, as I find it the least irritant on my sensitive skin.

I also find 3M Transpore great if I’m having a blood test as I’m often allergic to the tape the venepuncturist uses. Supplying my own reduces my chance of skin reaction.

My Wipe is great for removing sticky residue

Once a patch is removed there is always a ‘tide-mark’ left, just as there is with a ordinary sticking plaster. I tried various acetone based removers but they all seemed to cause a skin reaction. Then I found My Wipe on Amazon, it’s it easily removes the sticky residue and doesn’t unduly irritate my skin.

Use Derma Cream to reduce skin redness

This honey based cream is really great, it has many other uses, including helping with wound healing and infection. Again buyable from Amazon

I usually apply it directly after using a My Wipe and it substantially reduces redness and inflammation.

Beware though, it is quite sticky, and washing or using a baby wipe to clean your hands afterwards is essential.

 

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Everyday Life, Hints & Tips, Medical

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BlogPad Pro for WordPress

I’ve used this app for my last two posts – I really wish I’d found it when I first started to blog.

BlogPad Pro is easy and intuitive to use, especially when editing and putting in hyperlinks. It is truly WYSIWYG. Inserting imagines is much smoother and simpler too.

I’ve found that posting to my blog is quicker and much more enjoyable instead of being a chore.

My only gripe – no proofreading function. Although the one in the ‘official’ app is pretty basic is does help someone like me who types much slower than she thinks!

Otherwise worth every penny of £2.99

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