A Wheelie Good Summer

I’ve not blogged for a while as I’ve been in a bit of a slump. The lack of outdoors has rather hit me this year & combined with missing my partner in crime and her tribe as the weather attempts to look vaguely like spring I’ve been having a bit of a pity party for 1.

Having always been a bit of an active family, finding myself sitting on the sidelines or being wheeled about on nice flat surfaces is immensely frustrating. And welcome to the conundrum that is knowing that I am immensely lucky to have Mr Geek to look after me whilst also being so frustrated at being left out & having no physical outlet for stress.

I’ve made peace with the idea of being in a wheelchair. My pelvis is shot & the nerve damage is clear. But the pain Management team gave me that tiny light at the end of the tunnel that with persistent physio there is the hope of improving my general pain levels and upper body. But ongoing physio isn’t a thing that’s on offer – it’s a case of being given ideas and doing it yourself. So off we went and found this!

Hiring was our initial thought, but with only a couple of places in the UK offering this, supply & demand means that prices are upwards of ¬£125 ($180) per week. Erk! So, what about buying? …. an adult bike is usually a few hundred pounds…. oh. The curse of the disability markup strikes again.

So, what to do. Firstly, we start saving as much as we can. Secondly, my doctor has referred me to wheelchair services to ask for help with a manual rigid chair, and finally, swallow my pride & concerns and ask for help.

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https://www.gofundme.com/294kw344

If you’re reading this, I’d be so grateful if you’d consider sharing either this blog, or my link.

As always.
Sending much love into the ether that is the internet ūüíē

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It’s Happening & We Need Your Help!

The last week has been a bit crazy, but it looks like we climbed the ladder of this app idea and instead of slinking back down like scaredy cats, we’ve thrown ourselves down the deathslide of startup business and friction burns are in the not to distant future!

But we need a bit of help from you lovely people….

I know surveys are boring, but if you have a few minutes could you answer a few questions to help us get our heads around the kinds of things you guys need, or share this, or tweet a link to the form for other chronic illness people out there?

https://docs.google.com/forms/d/1QMIsaZHbK6ysVtMAcCSy5sfjqAsNVLQ4lGVDqrFNBqQ/viewform

Or use some other kind of social media that I’m way too old and boring to understand? Xxx

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As always, Nice to have you here.

Brexit – A Kids Breakfast or An EU Referendum

To quote the words of a friend, a Brexit is not in fact a toddler’s mispronunciation of breakfast, but the possible exit of the UK from the EU based on the voting of the masses. It’s now been officially announced that the vote will take place in June and will likely be used as a fabulous shiny distraction from the crappy things the current government are doing to the more vulnerable. (Cue onslaught on “liberal leftie” comments below).

I’m not really one to take propaganda at face value, so decided to look at the reasons for and against a Brexit on a personal level … Nope, still sounds like a toddler breakfast…

One major factor in my life right now is my physical disability. I make no secret that I am a wheelchair user and despite a chronic pain condition am also a full time member of the workforce. I Googled EU benefits for disabled (looking for the dictionary definition rather than the monetary kind) and found the European Commission page on Disabled benefits determined by the European Human Rights Act.

Its objectives are pursued by actions in eight priority areas:

1. Accessibility : make goods and services accessible to people with disabilities and promote the market of assistive devices.
So, without this protection the UK could make accessibility an opt in feature. It’s already not great in the UK and because it’s costly this objective could impact greatly on the ability of people with physical disabilities to participate in daily life. Off the top of my head, this could affect the insistance to provide ramps, parking spaces or hearing loops in the effort to save some money.

2. Participation : ensure that people with disabilities enjoy all benefits of EU citizenship; remove barriers to equal participation in public life and leisure activities; promote the provision of quality community-based services.
This could be interpreted in many ways. Could this mean that councils might not be forced to provide adult social services? Buses with ramps? Airport assistance? It’s all costly & with a Government that sees it’s current disability assessment process as fair, they could just as easily see working hard to provide your own equipment as fair.

3. Equality : combat discrimination based on disability and promote equal opportunities.
It’s already hard enough to arrive at a job interview with an obvious disability. The removal of this could allow employers to not interview, or just fire you once a disability is identified. My employer has been incredible, but I know that I am already very lucky even with this in place.
Discrimination can however be seen where airport staff won’t address you, or staff sigh and grumble that “it’s just a few steps”.

4.¬†Employment¬†: raise significantly the share of persons with disabilities working in the open labour market. They represent¬†one-sixth of the EU’s overall working-age population,¬†but their employment rate is comparatively low.
Right now, the reason I am able to continue working is down to the assistance I receive from Access To Work who co-fund a wheelchair accessible taxi, and perform an accessibility review every few years. They give a list of devices required to help me perform my role in the best way I can (such as trackball mice, or movable armrests). Without this help, I couldn’t continue with my role – with it, it’s hard work but the support is physical and mental.

5. Education and training : promote inclusive education and lifelong learning for students and pupils with disabilities. Equal access to quality education and lifelong learning enable disabled people to participate fully in society and improve their quality of life. The European Commission has launched several educational initiatives for disabled people. These include the European Agency for Development in Special Needs Education as well as a specific study group on disability and lifelong learning.
My CPD must be accessible. This also comes in the form of providing text to speech so that I can listen to notes when fatigue hits rather than reading through overstrained and bloodshot eyes.

6. Social protection : promote decent living conditions, combat poverty and social exclusion.
There’s enough out there already on the degrading process of applying for PIP, or ESA. As a well educated person with few mental health issues, I can confirm that it was one of the most dehumanising and distressing processes I have encountered. This is a rant for a different post.

7. Health : promote equal access to health services and related facilities.
I rely on the NHS to hold the stupid bendy pieces of me together. Imagine if we could only get treatment for things that were curable in a cost effective way?

8. External action : promote the rights of people with disabilities in the EU enlargement and international development programmes.
When you’re not the cookie cutter model of the “hard working taxpayer”, there’s always going to be a fear of being marginalised. It’s not that far fetched.

Objectives obtained & copied directly from the European Commission Website.

It’s an awful lot of protection that I’m afforded by being a European citizen and yet I can’t find anything to identify how being in the EU makes it worse for those with disabilities.

Clearly, this isn’t the only issue that matters, but it’s a start…

Handbook for The Recently Decreased

No one really expects to get ill, but when you suddenly go from being in some pain and having some off days to being in unbearable pain every day and feeling like you have a constant dose of flu, seeking out the help you need can feel like it’s actually more hassle than its worth. For some, just trying to get a diagnosis is like banging your head on a doctor shaped wall.

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So, having recently gone through some of the less pleasant processes, I thought I’d list out some of the things I wished I could’ve just been told about instead of finding them out from unrelated internet searches or mentioned in passing from friends. It might just save someone a teeny bit of sanity.

– this is UK related & only from personal experience –

1. Ask your GP to refer you
They aren’t omnipotent, nor are they a specialist. Let’s be honest, you’ve probably Googled your symptoms by now and the best way to confirm it is a specialist. Find a name & ask for a referral (yes, you can choose who to be referred to). Take printouts of what you’ve found & for Ehlers danlos, photos of your joints so you don’t have to perform like a monkey.

2. Don’t be afraid to be an expert
This is your body. Your doctor doesn’t go home in tears because they didn’t listen to you. Take notes – scan every letter and keep copies (Google Drive is your friend, especially with a phone as you can instantly bring up letter and show or quote from them). If you see a professional, ask for a copy of their assessment & keep it in your own medical file.
Take this with you to non-regular appointments. Having records & being on the ball prevents 80% of fobbing off incidents  (stats here are utterly made up, but the really does help).

3. Register with your council as disabled if you are.
This doesn’t actually provide any practical help, but can expedite help if you need it later. All councils are different, but Google “[council name] register disabled” and you’ll be able to download a standard letter for your GP to countersign.

4. Register your official carer with your GP
I hated doing this , even though it was Mr Geek. But, actually if I need him to advocate for me because I can’t tolerate my pain levels, or one of the painkillers my GP trials with me causes a reaction,  he has full access to my medical notes and can make decisions on my behalf. It’s a reflection of our relationship that I quite literally trust him with my life.

When I’m going crazy with pain, he’s also clued up enough to give me a sensible painkiller regime.

5. Sort out your travel
If you are able to travel by public transport, you may be able to apply for a free bus pass. If your GP or specialist believes you are unable to travel alone, they may also provide a companion pass.

I came across this by chance when looking for accessible taxis and although I would need a person with me, I put forward an application to maximise my independence. I can’t drive anymore, so taking my mum on a bus is a back up.

A blue badge is dependent on your local council again, but it’s not as traumatic as you might think (possibly in relation to the PIP assessment). Send evidence & just be honest about your worst day.

6. Talk to Your Employer
They’re probably more scared than you are right now. Saying the wrong thing is easy and if they’re faced with a new situation they may not want to get it wrong. Access To Work have been incredibly supportive since I first sent them a timid email asking if I could ask for advice. Not only did they listen to me, they’ve arranged to help with transport to and from work and are supporting my employer with making physical adjustments. Staying at work was (and is) an important thing for me and my move to a wheelchair left me terrified that my job would be taken away from me in the same way as my mobility was. My Case worker has been at the end of an email to reassure me and has been one of the first people to talk to me like I hadn’t lost my mind even though I’d lost my body.

7. PIP is horrible, but there is hope
Apply. Take a deep breath and if you find the form too difficult, get help.
I can’t tell you about the interview, as the wait between form and interview is currently 16 weeks (it’s reduced!), so I’m in limbo. Right now, I wake up in cold sweats with nightmares of assessors who will shout at me to get up and walk, or who will yank a joint and dislocate something. I am a strong person and fiercely independent, but my mental health had taken a good kicking from this process.

The Benefits and Work website has lots of useful information & although they charge for it which sort of puts me ill at ease, they’ve supported lots of people through.

8. Prescriptions are expensive!
Being a human guinea-pig for pain relief is getting expensive. If you’re working, there’s no free medication and each item currently comes with a charge of ¬£8.20 (even if the item costs more or less). My last prescription would’ve cost me nearly  ¬£50 had someone in the GP waiting room not been chatting about the pre-paid prescription service. So are,  the easiest way I’ve found to do this is to buy a 3 month card over the phone, then with a month left to run, set up the ¬£10 per month direct debit that gets a year long card for a 10 month direct debit.

9. The PAT Team are also there to help
One from my excellent sister-in-law. The PAT Team are there to support people who fall between the cracks of the NHS and social services. They also work alongside Access to Work team and provide advocacy and practical support.

10. Get yourself a friend
Chronic illness can make you feel really isolated and alone. There are some amazing support groups on social media and my daily Facebook interactions have dispelled some of the more unnerving aspects of having a rare condition. It’s also allowed me to connect with some people in person who have made life a whole lot nicer.
It’s hard to have a pity party when you’re supporting each other.

This isn’t an exhaustive list & I’m sure I’ll update it soon, but I hope you take away from this that you’re not alone.

What do you wish you’d known when you got ill?