Work With Me – campaigning with Scope

work with me Edith TakeoverThe disability equality charity Scope have partnered with Virgin Media in a new campaign to create more inclusive workplaces: Work With Me. They’re calling on businesses to take their pledge to collectively improve disability employment, having found some pretty sad statistics:

  • When applying for jobs only half of disabled people’s applications result in an interview, compared with 69 per cent for non-disabled applicants.
  • Disabled people apply for 60 per cent more jobs on average than non-disabled people in their job search.
  • More than a third (37 per cent) of disabled people who don’t feel confident about getting a job believe employers won’t hire them because of their impairment or condition.
  • More than half of disabled people have applied for jobs they know they are overqualified for.

There are of course aspects of illness and disability which impact someone’s ability to work (for me it’s increasingly fatigue), but with the right adaptations and technology I don’t think these are sufficient to explain the employment gap in the majority of cases.

So, as a disabled person in work, Scope asked me if I wanted to get involved. I’ve written a blog for them on my experiences of employment, and tomorrow I’ll be taking over Scope’s twitter account for a day!!! With power comes responsibility, I know, and without wanting to be a downer, I recoil from overly positive campaigns. As I wrote in my blog for Scope ‘When it comes to supporting disabled people in work, everything’s just so interlinked; if transport were better, if social care were better, if accessible accommodation were better and if employers were more flexible, then maybe I could commute and have more choice. But you need those four things to dramatically improve together.’ That’s still my bottom line, but ultimately I think working is incredibly valuable for my mental health. I’ll be interested to hear other’s perspectives – please share your stories and chat with me on Wednesday!

Work With Me Call to Action

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Should I just rest?

That magical perfect balance of rest and activity continues to be advised by… well everyone except those living with a chronic illness themselves. I am determined to do as much as I can; MS has enforced my YOLO mentality in the resolute knowledge that as health deteriorates, so do opportunities. But to be frank, it’s fucking exhausting.

I’ve been battling UTIs and a kidney infection for the past few months. Two weeks ago, following a five day dose of antibiotics, I was admitted for two nights into hospital A&E and treated for sepsis. My temperature and heart rate too high, my right arm cramped, elbow and neck in agony, and with a constant headache, it was all I could do to lie in the hospital bed with eyes closed.

Thankfully, within a day of strong treatment my symptoms eased up and between sleeping I talked to the nurses, looked out of the window, drank cups of tea with biscuits… and a part of me was relieved just to do nothing. A week later, I was bored and frustrated; still too weak and fatigued to do anything, not least returning to work.

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Yoga in the park

I was signed off work for two weeks and am attempting a staggered return back while largely working from home. I’m still really physically weak and it’s making it difficult to cope with my carers, so a homecare assessment is being arranged. My MS nurse told me I need to leave a recovery time of six weeks to then assess my new baseline, and it’s hard to be optimistic right now. Last week my yoga teacher took me to the park for a session… I spent the rest of the day knackered and stayed inside.

I’m desperately hoping things pick up, but I’m still nagged by that light bulb moment in hospital.

The problem is that living with MS is tiring in itself. Social care, prescriptions, doctors and physio visits all need active management. Throw in work, exercise and the chores and admin of adult life and my battery is running low. So then do I want to spend my remaining capacity resting or actually doing something fun and making memories? 

What I need to be more conscious of is burning myself out. Wearing down my resources so low that I can’t fight off common colds and infections. At the moment, I don’t know my limits and push through until I crash. So I need to somehow learn. I feel exasperated when healthy people tell me to ‘listen to my body’ (they all receive a smile with pursed lips and an imaginary slap round the face). Other than when I lie in bed at the end of the day, or manage to trick it with drugs and alcohol, my body always whimpers ‘I’m sorry, I’m trying but I can’t do this, please leave me alone‘. So as always with physical disability, the gauge has to be mental. My brain needs to remind itself when my body really does need time out. Of course I’m being simplistic; mind and body are one and interlinked, but it’s the only vague solution I can think of right now. Advice gratefully received.

 

New York: lovely, accessible, concrete

I finally visited New York, it’s been on my destination list for years, and luckily two of my best friends were also keen to go. With a deteriorating condition like MS, things only get harder, so I know that I add urgency to experiences… why wait? The easiest and best time is always sooner. I’m aware the flip side of this is that it can suck the fun out of any situation or plan, like a constant back seat passenger demanding ‘are we there yet?’, but having known my two co-travellers most my life, and going abroad with each of them before, they get it.

We ticked off all the tourist sites, it was awesome, everyone was exhausted.

  • The Tenement Museum – An interesting look at America’s immigration history from an old apartment building on the Lower East Side. It’s not a passive walk through, you need to book on to one of the guided tours and could spend a week going on the different ones.
  • One World Observatory – At the top of the new trade centre, next to the Twin Towers memorial and museum. 360 views of Manhattan, Brooklyn and New Jersey.
  • Liberty and Ellis Island – I was surprised at how moving I found the Statue of Liberty when faced with it, and the Ellis Island museum was especially chilling when you learn that all disabled and sick people were separated from their families and forced back on a boat to Europe. Today, the trip is completely accessible, and as there are stairs leading to the pre-ferry security check, ramp users can skip the queue.
  • Brooklyn Bridge – Has to be crossed off, but to get to the restaurants in the DUMBO area at the Brooklyn end, avoiding the stairs means quite a long and unsignposted walk around.
  • Mean Girls on Broadway – Tina Fey is a genius. I can’t wait to see this again if it comes to London.
  • The Rockefeller Centre – Great views of Manhattan once you can find your way to the entrance, not an obvious tour round the foyer for step free users!
  • Chelsea market – Yum…
  • The High Line – An old raised rail line now a walkway through the city. A great perspective with regular lifts down to street level.
  • Central Park – It’s hilly in places but if you stick to the walkways there are smooth routes through it. Totally beautiful and worth the visit.

So all to plan once we got past the shaky arrival; New York’s JFK airport assistance was abysmal. We waited on the plane for crew to arrive to get me off… and waited… and waited. The flight staff and pilots can’t leave until all passengers have left so were gathered too. Eventually two guys turned up, who didn’t speak much English, and wouldn’t transfer me into the aisle seat, seriously, WHAT IS YOUR JOB?! The guy then repeatedly tried to pull me down the plane using my legs. Luckily mine aren’t painful, and an air stewardess took over from him. The Virgin Atlantic staff watched on in horror. I’ve experienced worse, as I’m sure most disabled travellers have, but it’s always comforting to see the reaction of those not used to the cattle-like treatment we’re often met with. On the return flight we were surprised with an upgrade to Virgin’s Premier class and Club lounge in apology. It’s so great when an airline shares responsibility for its disabled passengers, rather than helplessly pointing to the airport’s assistance, credit to Virgin Atlantic’s response.

The same can’t be said for the Holiday Inn Group. I often veer towards hotel chains, they can be less pleasant or interesting, but you can at least be more confident of access. I’d spent a tedious afternoon booking with them, and agreeing that as three people couldn’t fit in an accessible room, they would offer a second single room free of charge. Obviously when we arrived, beaten from the JFK assistance debacle and luggageless (this mix up was our fault, but still), there was no record of it. Eventually we agreed to squeeze an extra bed into the accessible room rather than pay for a second room, and I am still pursuing reimbursement of the cancellation fee applied for it. The lack of protocol always baffles me. I cannot be the first disabled guest wanting a three bed room, but it feels like I’m trying to organise a space mission every time.

Getting around was okay, some subway stations are accessible, but like London you have to plan your route pretty inflexibly. There are a range of yellow cabs, we took a wheelchair accessible large one from the airport to Manhattan which was waiting in the taxi rank. But on the whole, the wheelchair accessible cabs driving around the city only have space for one other passenger (because y’know, disabled people have max one friend), so we mainly had to transfer into cars and ubers. The good news is they’re much cheaper than London black cabs.

One thing for sure is that Manhattan is smooth, with wide, concrete pavements. The constant kerbs and road crossings along the grid systems are annoying interludes, but all with dropped slopes. The fact I didn’t notice stairs and inaccessible toilets blocking me from cafes and venues means it must have been pretty good.

(I actually went in April, but exhaustion and the return of UTIs has knocked me back a bit hence the delay in posting!)

My care battle now in the Mail on Sunday

It’s the experience that keeps on going… now nearly a year ago, those horrible few months where I was facing a loss of social care which would leave me bed bound, jobless, and potentially in a care home, is featured in today’s newspaper and online.

The Sue Ryder charity commissioned a report into young adults in care homes, it’s scarily not uncommon. As I’ve written before I seem to have unwittingly become the go to case for social care problems, now having shared my experience in the UK with the BBC, the Guardian, the i, Scope, the MS Society, and now the Mail on Sunday. I would never normally promote the Mail (I don’t agree with most of its views), but we need to shout about social care problems to a big an audience as possible.

The accompanying photo was arranged pretty last minute. On Thursday afternoon at work, fatigued and stuck in the disabled toilet in my office without the strength to get up (I later called my colleague for help) is when I received a call from one of the editors:
“Can we get some photos of you… this afternoon?”
“Now isn’t really a good time no…”
My understatement of the year.

No black, no jeans, they told me. Tricky, but I went for a stripy white T-shirt dress. A nice photographer arrived on Friday morning, and instantly said I’d need to change. Apparently the editor is very strict on clothing, so we literally opened up my wardrobe and he selected an outfit I don’t think I’ve ever worn. I later learnt that he often takes people out and buys them a new outfit so I missed out there, will know for another time!

A different wheelchair makes a big difference

Turns out some wheelchairs are way nicer than others… and spending all day sat in a better one has made a big improvement to both my physical effort and self confidence. Who knew?!

Call me a cynic, but when I moved into a wheelchair four years ago, I just thought they were all much of a muchness. Sure, Paralympic athletes had super high tech carbon models, but for the average Joe, any small variations were superfluous. I guess a part of it was my reluctance to accept that a wheelchair was a permanent item in my life – my new form. I didn’t want to invest any time or money in it. I did the same thing when I used crutches; rather than buying some slightly nicer ones, I stuck with the NHS silver sticks for what turned out to be three years, rather than a temporary relapse.

Total kudos to Selma Blair for walking the red carpet at the Oscars with her cane last week. I couldn’t have done it a few years ago; it’s taken me years to become more confident with my disability and accept it as a part of my life. I think one factor is age, Selma’s 46 (according to Wikipedia, seems mad from photos) and I know that since hitting my thirties I feel less insecure in general. I wasn’t in a supportive relationship when disability really kicked in and was battling inaccessible housing and transport in Zone 2 London, which all made it harder to adapt my life to my decreased mobility. It was easier to pretend it wasn’t as bad as it was, for as long as I could.

When finally forced to use it, I intrinsically disliked my wheelchair. But during that transition I think I would have felt the same even if it could fly, and dispensed cash with every wheel spin. Plus there’s no guide on how to navigate disability, initially I was barely surviving through a pretty tough period in my life, just being led by NHS referrals. You only then find more information if you choose to look for it.

I can’t even take credit for this. My aunt suggested it, and proposed the idea of fast tracking my inheritance from my Granpa. I know I’m very lucky to have my family as they don’t come cheap. This chair cost over £2,000. Is it worth that much? Probably not, but as is often the case with anything tailored to disability, be it beds, bathroom equipment, or holidays, you pay a premium for a smaller market, the worst of both worlds. But it is better in many small ways which add up to a lot:

  • It is so much easier to wheel myself around, which is a combination of many factors. Smaller front wheels, an altered seat position and centre of gravity, tapered wheels. There’s probably more to it, but the effort it takes me to push myself around is so much less, to the point that when I get into my old chair I instantly feel a strain down my neck and shoulders which I must have just become used to before.
  • Rubber grips around the wheel rims mean that even with the weakness in my right hand, it’s much easier to propel myself rather than trying to hold onto slippery metallic rims.
  • It’s shorter. The smaller footplates and fold down handles at the back mean I physically use up less space in a room. On a practical level that’s helpful for maneuvering, but more than that it makes me feel more like a human than a heavy goods vehicle.
  • The brakes are physically easier to clip on and off, again a huge plus with my weaker right arm.
  • My seated posture within it is more comfortable and upright. When I now sit in my old wheelchair I feel slumped and miles from my knees. My back seems to unconsciously turn off and becomes stiffer.
  • Aesthetics. I chose a black chair with black and orange spokes. As far as wheelchairs go I think it looks good. Younger, more fashionable I suppose. The little bit of colour is a little bit of choice in the position I’m forced into, and when everyone’s initial perception of me is as ‘The girl in the wheelchair’, having a wheelchair that I’m happier with is a big confidence boost.

The chair is from Draft wheelchairs, their showroom is a little intimidating (racing chairs and hand powered bikes), but they were great in the options available and giving me a different perspective on wheelchairs. The chair is a Quickie model with Spinergy wheels, all in black but for the orange spokes.

My NHS chair is now my ‘outside chair’. It’s easier for someone else to push, to tilt up kerbs, and I don’t care if it gets bashed about cobbled pavements or muddy paths. My new chair is used mainly in my home, work, or evenings inside. I’ve learnt my lesson here – sometimes it is worth paying out to cater for disability. Of course it’s not what I’d prefer to spend money, or two afternoon trips on, but I’ve accepted MS as a permanent and very large part of my life now, and paying attention to such an integral part of myself might be a good investment.

A slow hello to 2019

img_1809A belated happy new year… on the 21st of January. I do intend to have a much calmer year than last year (which shouldn’t be hard), but was hoping more for a fortifying serenity than the blur of fatigue and weakness I’ve had so far. I’m currently coming out of a heavy cold which has left me bleary eyed and with bin bags full of tissues. I keep feeling glad it’s just a cold, not a bad UTI or something, I’ve noticed relativising all illnesses and symptoms is a very ‘MS response’.

My blog summary of 2018 is a useful benchmark to compare against 12 months on. Be it the social care stress or the hot summer (probably both), my health is worse now. As Frances Ryan succinctly described it in her catch up guardian article: the strain has taken its toll.  My legs are weaker, my right hand more useless, and fatigue levels higher. I’ve developed a trapped nerve and pain down my neck and right elbow because of the efforts I make trying to compensate for my right arm – add an osteopath to the list of therapists in my contact list that I need to budget for. The problem with a progressive illness is that decline happens surreptitiously. You have a few run down days at work, or an infection, which you don’t fully pick up from. You adapt to using one hand all the time, rather than just sometimes. There’s rarely a sudden crash to easily measure back to. So looking year on year: MS has made life harder, and it’s explainable, but it still sucks.

There were certainly highlights to last year, it’s just hard to look past the declining physical ability caused by MS, which impacts everything. When I force myself to use a different lens though, my trips to Canada, Edinburgh, Lithuania and Downing Street were all pretty awesome and created memories I’ll treasure. And, although absent social care wouldn’t have been my choice topic to share in national press, I guess speaking live on BBC tv was an unexpected achievement of the year, and the media coverage has confirmed how much these stories need telling.

So for 2019 I would of course, ideally, like to gain strength. And also be cured, maybe win the lottery too. Realistically I need to just try and maintain myself. Easier said than done with family bereavement, social care availability and the weather of 2018 all entirely out of my control. Such is life, but for my part I’m going to continue spending the next few weeks staying in, eating wholesomely, chilling and trying to muster some energy. Boring blogging… soz… let’s hope things pick up.

Front page for the MS Society

Having been through my social care crisis this Spring, I’m glad at least to make the experience useful…

The MS Society are partnering with the i newspaper for their Christmas appeal, so my story was published today as part of it.

I didn’t expect my face to make the front page, it’s surreal how shocked people continue to be by what happened, whilst those with any experience of social care know how fragile the system is. I’m just glad the six months with my new care agency are going well – funnily my lovely Polish carer popped to my corner shop to grab the paper this morning! Here’s hoping some good can come of my story.

The article is in the i newspaper today and online here.

When your body says ‘enough’

img_1698It’s been a busy few weeks, actually quite relentless since coming home from my holiday in Canada, and my body is now screaming at me to stop (actually more a persistent whimper). I hate feeling like I’m wasting my life, being bored and doing nothing, but I seem permanently unable to find that magic balance between life and rest. So I did the living, and then paid for it.

A few days back in the UK and I was off to a hen do (bachelorette party), it’s just one of those things you have to go to isn’t it? A weekend away doing drunken karaoke is fun, but when jet lagged and already knackered harder to enjoy.

Two weeks later, a trip to Vilnius, the capital of Lithuania. I know from experience that Eastern Europe is fairly inaccessible, but visiting so soon after Canada, the contrast was brutal. Steps everywhere, cobbled streets, narrow doorways, and not a handrail in sight. I didn’t see other people in wheelchairs, and there weren’t many offers of help. It’s beautiful for sure and culturally interesting, with great beer, but far from easy. This was the same weekend as the People’s Vote anti-Brexit march in London which I would totally have been at otherwise… I just selfishly maximised my own European free movement instead.

An overnight trip with some of my besties in Brighton had long been scheduled. as is normal with 30-somethings, diaries need to be synced a few months in advance. I can’t say I saw a lot of the town, it was more a food and drink trip. On weekdays a direct train runs between my hometown in Hertfordshire and Brighton but unhelpfully not on weekends, plus there were rail replacement buses for part of the leg. Of course the buses aren’t accessible (traditional coaches with steps up). I booked the assistance with national rail and they promised me a taxi alternative to the buses for each leg of the journey. I was totally cynical but the process actually worked seamlessly, with taxis waiting on time for me each way. It means you’re limited to set travel times, as always forced into a pre-planned schedule which can accommodate disability. But, credit where due, The system worked.

I booked tickets to see Jon Hopkins at Brixton Academy back in March, before there was anything else in my autumnal calendar in fact. Massive kudos always to Brixton Academy for their disabled access (all the London O2 academies are reliably accessible). Touring his latest album, it was an electric show followed by a ridiculous few hours in an R&B bar with two of my besties. Not a lot of sleep involved.

I was rather excited to be invited by the MS Society to an afternoon reception at 10 Downing Street to celebrate advancements in MS research and the contribution of vounteers. You have to leave your phone in the entrance so no photos, but the reception rooms we were hosted in were exquisite, imagine a luxury English hotel… with work from famous artists (Lowry, Turner, Emin) dotted around; it all made House of Cards seem quite realistic. Disabled access all flawless (I guess they were prepared for people like me, ready to tweet about any inaccessibility the moment I left). To be honest I was impressed that PM Theresa May came in and spoke, it’s not like she isn’t busy right now, and speaking of her mother, who had MS, she came across very personably. The speech then went on to the obligatory stats about how the government has funded and supported the NHS and NICE, and given my constant first hand experience of health and social care it was hard to keep calm faced during this part. She also praised the MS Society on their work in ‘raising the public profile’ of MS, which I found slightly jarring, would she praise campaigners against violent crime in the same way whilst underfunding our police service!? Also there were some leading professors in MS research including Professor Compston, who led MS research at the University of Cambridge, culminating in the discovery of Alemtuzumab (Lemtrada). I was humbled to speak with him and although he’s now retired, the group he established at Cambridge continues to research MS treatments (what a legacy). I can’t express how grateful I am to people like him – on top of that he was really helpful in passing my coffee cup back and forth from a nearby table. My ‘thank you’s didn’t really go far enough.

This was all polished off by a week of working in London. There are times that I convince myself that the 30 minute train commute into the city would be totally possible for me, and open up a new set of job opportunities. Then I have to do it for a few days and laugh at myself for having considered it. Added to the travel is the stress of organising train ramp assistance, followed by finding and getting into cabs once in London. I was ready for bed each day on arrival to my morning meetings.

Following all that my body just seem to stop. Transferring, whether out of bed or off the toilet became near impossible. I thought I had a UTI, and took the corresponding antibiotics for a week, but following hospital tests on my urine sample it’s not that. My GP has now given me Amoxicillin, which I always think is the antibiotic equivalent of a pat on the head and shrug of the shoulders.

Last week I had to have my walking assessed to qualify for my quarterly Fampridine prescription. It always involves a certain level of anxiety as my ‘walking’, even with zimmer frame and FES, is limited, and I know that I’ve lost strength following the social care stresses of spring and the hot summer. This assessment was my worst so far, I could barely stand up, but even when I could it was as if my toes were glued to the floor. I couldn’t move at all, let alone slowly and the prescribing physio’s stopwatch didn’t even get started. On the basis that I have previously been a strong responder to the drug (my 10 metre walking speed increasing up to 250%), I’ve been given three months grace where I can continue taking the drug and be reassessed in the New Year. I am already dreading the appointment.

I have spent this week resting, sleep upon sleep. It’s times like this that MS feels not just a disability, but much more an illness. I wouldn’t want to have missed any of the past month’s fun, I just need to learn to pace myself, rather than do everything till I crash, then spend weeks recovering. Sound simple enough.

C A N A D A

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World’s tallest totem, Victoria

I’m back home after an awesome three week holiday to Canada with my parents, west coast Vancouver right over to the eastern cities. That country is BIG, but has an impressively consistent practical courtesy and equipped infrastructure throughout, which just makes everything easier when travelling in a wheelchair.

There are disabled toilets (including public sharps bins) everywhere, and not down a separate corridor to the others (only located following a frenzied search with my bladder ready to spill) but within a cubicle alongside the rest. Restaurants and bars followed the same trend, disabled parking was always available, electric ramps on buses, automatic doors and dropped kerbs at road crossings (and pedestrians seem to always have right of way). Even the boat trip into Niagara Falls was a roll on process, and I got soaked along with everyone else. Most impressive were the natural hot springs at Banff in the Rockies: after transferring to the water wheelchair, you could then roll from the changing rooms straight into the pool. Having got in however, 38°C water proved far too warm and turned me to jelly, I scarily lost control of my neck and couldn’t hold my head up. Still, the snowy night outside restored me quickly and it was worth it for the beauty. I can’t say the mountain minerals made any difference to my muscles, but it did give me glossy hair so the benefits weren’t completely fabricated…

Catching flights was a revelation. No separate process for disabled travellers. No additional assistance desk where you effectively need to check in twice. No requirement to arrive at the departure gate earlier than other passengers. We just checked in our bags and were told to head to the gate as normal where I was then tagged and lifted onto the plane. No fuss, no problem.

Another stark difference was the lack of concession for disabled people or carers in entry or ticket prices, something quite standard in the UK (over 65 seniors however were always discounted). On one hand the overall impression is that disabled people aren’t segregated, be it in access and opportuites, or entry prices. And I like that, being one of the majority again on the price list. However, as much as I’d like to pretend I can do everything independently… I just can’t. I need someone with me to help, in toilets, when I drop things, for pushing around, so have a new appreciation of the UK’s widespread carer discounts.

The scale and space of Canada is really spectacular in contrast to urban Europe. The air just feels fresh and clean in your lungs, the roads and pavements are wide. Toronto was unbelievably well maintained, a gorgeous city where I couldn’t even feel the breaks between paving stones – something only wheelchair users will appreciate! Coming from a half French/half English household where a kind of ‘Frenglish’ is my native tongue, the Canadian-French area of Quebec felt like my cultural home. Unfortunately, in another nod to Europe, it was suddenly difficult again, and felt like being dropped back in a British (or French) town. Ridges in the pavement, lifts and automatic doors not working, steps into buildings. As a silver lining Montreal’s Renaissance hotel was home to the best wet room I’ve ever seen, huge, practical and stylish, but beyond that, disabled bathrooms were wanting.

My dad is still able to lift me which makes such an adventurous family trip possible, and it was lovely to spend time with my family away from the hospitals and waiting rooms which have become our usual scenery. By no means a cheap trip, but one that will stay in my memory a long time. Oh, and maple syrup is delicious.

 

 

Social care, I think it’s become my ‘thing’

img_1471As part of Scope’s Disability Gamechanger campaign I’ve written about my experience with social care… and as regular readers know, it’s been anything but rosy. I initially hesitated, thinking they’d want some inspiratonal story about how empowering social care is, but after a chat, a real description fitted the bill.

So that’s what I did. Social care DOES enable independence and choice indirectly, but I’m really cautious of any media that describes care as a choice. As I say in the blog “Writing about my twice daily care visits feels like trying to describe brushing my teeth, or cutting my nails. It’s boring and I aim not to focus any great deal of time on it, it’s just an essential part of daily life.”

It’s great to be working with Scope, I love their attitude to inclusivity and how they try to challenge perceptions. It’s just weird that social care has inadvertently become my ‘thing’. I’ve never wanted my homecare visits to be what I speak most publicly about… but I guess that’s the point, no one wants it to take over their life, which is why it needs attention.

The blog is live at Scope here.