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Archive for the ‘Hints & Tips’ Category

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.

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.

 

 

 

 

 

 

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.

 

 

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.

 

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.

 

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 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

iPad Holder Update

Standzfree Universal iPad Holder

Standzfree Universal iPad Holder

Back in September last year, I wrote about the Standzfree  iPad holder. I commented about how good this iPad holder was, but also mentioned one flaw in relation to being unable to charge your iPad whilst using it. Now Standzfree has solved that problem. I upgraded my iPad recently. My lovely old original iPad was getting very slow & kept crashing, so I treated myself to the new iPad Air. I’m thrilled with it and love its lightness. But, it cannot be used with my original stand. I quickly discovered that Standzfree has now brought out a universal holder, which works with all tablets and means it’s possible to charge your tablet whilst using it. Just perfect! The two lower grips are fixed but the upper one is spring-loaded, meaning your iPad Is really secure. It holds the iPad Air when it’s in a case very snugly either in portrait or landscape mode. An indispensable gadget for any disabled person.

Wearing Scleral Lenses for Longer

I’ve had my new scleral contact lens for over 6 months now, and whilst I’m pleased they give me really good vision, I’m still trying to find ways of being able to wear them for longer each day. My current wearing time is now up to about 10hrs a day, but some days it’s only 8 and only very occasionally I can manage 12hrs.

Obviously this restricts my activities to some extent, the most difficult thing is travelling when I’m driving to see my cousins the other side of London. I need to time my stay with them to make sure I get home before my lenses start to cloud over or become very uncomfortable. Not always an easy task, as my journey times to and fro can take from 75ms to 150mins! Such are the variations in the traffic and the roadworks that continue to plague the London driver.

I’ve been experimenting with different solutions, my choice is limited to those without preservatives, as I’m allergic to them. I settled on Lens Plus but still had discomfort after a few hours. My consultant suggested using HyloForte to help with dry eye, but it seems to cause cloudiness. So, I started looking for other solutions. I came across Hylo-Care, which is designed for both dry eye and where there has been recent surgery or damage to the outer layer of the cornea.

I’ve been using this for over a month now and it really has helped to increase my wearing time, previously I was only getting 4-6 hours, this has now doubled. I don’t think it’s just due to increased tolerance, but purely to the drops, as when I had a problem getting the Hylo-Care prescribed and I had to revert to using the Lens Plus on its own, my tolerance level reduced.

Hylo-Care

Hylo-Care

Once I’ve cleaned my lenses I use approximately 15 drops of Hylo-Care in my larger, specially moulded scleral lens, topping up with Lens Plus. I then use approximately 10 drops in my smaller, conventionally shaped scleral lens before the top up of Lens Plus. I believe this mix of solutions is working well for me, and whilst it may not work for everyone I wanted to share my success in the hope that it may help some people. Not all ophthalmic practitioners seem to have heard of Hylo-Care and at my last hospital appointment the Registrar hadn’t come across it before.

Whilst Hylo-Care is available on prescription in the UK, I don’t know what the availability is in other countries.

One other problem I have had with wearing my scleral lenses is when my eyes do get dry, the area directly around my eye gets red and sore. I’ve been trying to find a reasonably priced eye gel that will help. I’m a great Body Shop fan and decided to try Aloe Eye Defence. The label says it’s ok to use with contact lenses, but like any skin product if you put it near your eye when you’re wearing scleral lenses you are almost guaranteed to have smearing & will need to clean your lenses and re-insert them! I somehow manage to do this at least once or twice a week!

Body Shop Aloe Eye Defence

Body Shop Aloe Eye Defence

So, I just use the Aloe Eye Defence first thing in the morning, about 3 hours before putting in my lenses and then at night before going to sleep. It certainly has helped to make the skin around my eyes less red. At £10 each bottle, Aloe Eye Defence is nowhere near as expensive as many similar cosmetic products either, so worth a try.

The must-have iPad holder

One of the daily difficulties I have is the need to hold my iPad in my left hand whilst I’m either typing or web surfing. Also my grip in that hand is poor so sometimes my precious iPad has been dropped. I also get quite bad pain in my left wrist, and have cortisone injections as a result. So I’ve been looking out for a stand that would hold my iPad, I use it to do so many things and if I don’t have to hold it all the time it would be some much easier to multi-task.

Thanks to Amazon, (as a disabled person I don’t know how I would manage without them, so much easier and cheaper to buy on line, than having to struggle to get to shops) I found a product called a Standzfree. It has a thin base that easily goes under my bed or sofa and then a height-adjustable pole, with a flexible arm at the end of which is a ball & socket joint with a manoeuvrable tri-shaped holder for the iPad, enabling it to be moved into the optimum position for use.

My only minor niggle is that the single clip that helps to keep the iPad in place clips into the slot used for charging the iPad. This means the iPad is slightly less stable in the stand if used whilst on charge. So apart from it’s overnight change for cloud back-up I try only to charge the iPad when watching a streamed film or broadcast, when stability is less of an issue.

It was well worth the money, for £61 including delivery I now have the ability to write this blog whilst laying comfortably in bed! Reduced pain and luxury!

Standzfree have a US site for anyone not wanting to use Amazon

They also have a twitter feed & a Facebook page

The images below are from the Standzfree page on Amazon.co.uk

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