Sit-skiing in the Alps

img_2962Ski holidays are really bittersweet for me. I love being in the snow and mountains, the dramatic scenery and the crisp, cold air; but I still feel such a pang of loss not being able to ski anymore.

I was never a runner. So when I see people jog marathons, I of course feel envy at their strength and ability, but nothing more personal than that. Missing out on the freedom and adrenaline of skiing however, having skiied since childhood, really hurts. I accepted I couldn’t ski any more and tried adapted skiing, first, reluctantly in 2015, and again in 2017. I still felt tearful on my first lift up the slopes, but I’m so happy there’s a way for disabled people to get on to the snow.

Last week was spent in Schladming, Austria, one of the country’s most developed resorts for disabled skiing options. I was sit-skiing on two skis, which obviously makes it easier to balance. The most advanced option for disabled skiers in terms of speed and experience is to use a mono ski, when you are supported higher off the ground on one ski. You need a really strong core and upper body for it… it’s not in the pipeline for me!

I’ve been clear before, it’s not the same as skiing. Unless you’re really expert with your own equipment, you’re going to be with an instructor. This puts a limit on your freedom from the start as the sessions need to be pre-booked. I had strategically planned in two rest days, and one of them fell on the sunniest day of the holiday, following a night of snowfall: in short, I missed perfect ski conditions. You do however get the speed,  and it’s also still exercise – I was breathless at the end of some runs. I wondered beforehand if I would still be able to do anything myself, given the deterioration in my right hand (just putting a ski glove on proved very difficult, sometimes a three man job), The first day saw any slight turn to the right descend into a collapse on the snow, as I just couldn’t hold myself up,  but by the last day I was managing. It’s a very expensive and extravagant way to build core strength, but it definitely worked…

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The whole week went too quickly. For those of us who are generally physically confined, having that change of scene and movement is so welcome. As with everything disability related, there’s an added expense. Skiing is by no means a cheap holiday anyway, but the necessity of specialised equipment and one-on-one instruction comes to €90 for a two hour session. So if you didn’t have fatigue and wanted to do several sessions a day, it would quickly add up. I think some grief will always surface for me on snow holidays (and on a darker note, considering how mild it was in what should be the coldest point of the season, maybe in a few decades we’ll all be grieving skiing), but that feeling is a common one in MS; it’s totally still worth going.

 

The MS decade

I’ve realised I found it useful to write a blog annually summing up my year. MS can be so hard to measure distinctly, it’s not that kind of disease with obvious benchmarks, more like a creeping weed which starts as an annoyance but before you know it is obscuring the light coming into all your windows and trapping your doors closed. Ultimately, this is the decade where I became disabled. I was diagnosed in 2006 at just 16 years old (and probably had the condition for a few years pre-diagnosis), but it kicked in and started affecting my writing, walking, and energy from 2013, and I’ve had relatively little reprieve from progression since then. 2019 has been another difficult year:

  • Only 18 months after my last social care crisis, I was yet again left with no carers able to visit me. My former agency were short staffed, and the council couldn’t find anyone to take on the work. It felt like all my efforts from the spring of 2018 had been wasted, and I had to start again. So once again I contacted the council, my MP, charities, and journalists, and found myself reappearing on BBC2’s Victoria Derbyshire programme. I’m so grateful to them for featuring my story, and the large response they received on social media was comforting… I’m not making a fuss, it’s just those unaffected don’t realise the extent of inadequacy in our social care system. It worked, and a new agency was found, but am I going to have to battle through this my whole life?
  • Two inpatient hospital stays really affected me. The first in May for a serious UTI, the second in October following my catheter operation and subsequent infection. More on that to follow, I’m still getting used to it. Each time my neurologist and MS nurse have said that there should be no change to my baseline strength, that I will recover. But I haven’t. The transition to walking with crutches after my inpatient hospital stay of 2013 (again a UTI) was permanent. No medical professional believes the decline should be, but I’ve learnt from my body, it is.
  • So my strength this year has declined, I find it harder to transfer between chairs, in and out of cars, and on and off the toilet. Not only can I no longer hand write, I can’t cut up my food using my right hand any more – I have to ask friends or waiters to do it. I now use voice dictation software at work because my right hand can’t keep up with typing. It means I rely a lot on family and friends for lifting and transferring me around, which I know isn’t fair on them. I’d love to stay hopeful that I can build up some strength, but the reality is that the weaker you get, the harder it is to exercise. I can’t exactly go for a run or pop to the gym, everything becomes a bigger task… which is exhausting.
  • Despite all this my mental health is better. I completed nine months of therapy with a psychologist, specialised in chronic illnesses. I’ve seen counsellors and mental health professionals in the past and never got very far with them. It was a real breakthrough this time, to speak with someone who I respected, and whose approach worked for me. I spent a year taking antidepressants while going through the sessions, and it was hard work – it’s not something you can go into passively. It of course doesn’t make MS any easier, I still cry, I still get scared, and that’s not going to go away. But I guess I’m more able to stop those feelings corroding every day.

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A great antidote to all the scary unknowns was getting my first tattoo a few weeks ago. I’d liked the idea of having one for ages, and hesitated over the permanence of it… Having a catheter fitted was the final straw. Do I like any of the permanent changes to my body so far? Have I chosen to use a wheelchair? I know it’s only been a few weeks but I adore my tattoo, designed and inked by the amazing Jannali Hepple while she was last working in London. It’s a little piece of my body which I’ve chosen to change, and that makes me happy. The positioning on my left arm is deliberate, long time readers will know how I’ve whinged about any remaining muscle I have migrating to my upper arms, my left arm in particular, as the right becomes more useless. I should not complain about any part of my body being strong, I genuinely know that. But again, now there is a part of my arm’s appearance which has been chosen by me, and that feels great. As for the pain, it is nothing compared to the shooting nerve pain which flares through my neck and arms, or even having a cannula badly inserted (I’ve learnt which nurses to avoid on my monthly Tysabri infusions), to the extent that I nearly fell asleep on the tattoo table.

It’s hard to imagine how my MS will progress over the next ten years, or the ten after that. I know it will, it’s one of the few certainties I have, but trying to predict which limb or sense will be next affected, and when, is impossible. Which all sounds morbid, but the reality is that all I can control is trying to do as much of the things I like: travelling, and seeing friends and family. So I’ll try and fit as much of that into the next decade as possible, The rest will happen when it happens… and I’ll let you know.

Social care resolved… but for how long this time?!

img_2757After escalating my problem to the national media a few weeks ago, two care agencies visited me for assessments last Monday. One was based in my hometown and able to start straight away… so I asked social services to commence with them.

True to their word they started that night. Adjusting to a new care agency is stressful – trying to give directions at 7am when you’ve just woken up, to someone who is not used to how stiff my legs get, or how to use my standing equipment is hard work. It was a relief to get a coffee at my desk come 9am at work, I think this is what so many able bodied people don’t realise… Line it up against social care, the sheer logistics of seeing different doctors in different hospitals, nurses and getting prescriptions, and working is the easiest part of my life.

It took many tearful phone calls to social services and a week without care to reach this point. I don’t know the inner workings of adult care admin, but this is the impression from my side; social services have a handful of agencies available to them, who have won the council’s contract and been through a tendering and procurement process. If none of these agencies have availability, then so be it, everyone’s hands are tied and nothing can be done. This was the case for me, needing call times specifically to get me in and out of bed at the bookends of my day, so that when no agency could cover, I was just left with no one. My parents are in their sixties, and have health concerns of their own, they were able to help me this time around, but it’s not a future proof solution, and it also asks a lot of them. What would I have done if they couldn’t have helped? Got a paramedic to put me to bed and then stayed there for a week? Gone into hospital? So I shouted to the MS Society and was interviewed live on the Victoria Derbyshire show on BBC2. The gates then seemed to be unlocked, and social services were allowed to contact and contract with other agencies in the area ‘off the list’, hence finding two with potential availability 

The social care system is so alarmingly unable to meet the needs of people. I was in the same position 18 months ago and this is the sinking proof that it wasn’t a one off failure. If you break your leg and go to A&E, sure your nearest A&E hospital might have closed and you have to go further, the wait might be long: it is far from perfect but you would be seen and supported by some arm of the NHS. Social care doesn’t feel like that. There are private care agencies who are not interlinked. Local social care is paid for by local councils, and they cannot force these private agencies to do anything. If they can’t meet demand, there is no safety net. 

I will need social care for the rest of my life. Unless an amazing MS treatment is found which holds the disease, I am in fact likely to rely on it more and more. There is no long term plan by the government, there is no long term support for people relying on care, it’s scary. However you vote, please challenge politicians on why social and health care are treated so differently… it makes no sense.

Thanks to the MS Society, the Victoria Derbyshire show, and the i paper. 

Social care crisis… again

It’s unbelievable, even to me, but I’m in the position I was in 18 months ago, and once again have no social care.

The agency that were coming to me to hoist me out of bed in the mornings, dress and wash me, told me about a month ago that they were too shortstaffed to continue and had given in their notice to social services.  I heard nothing from social services so had to trust that the mechanism was working behind the scenes and they were finding alternatives.

On Friday, I had my first call from a social worker telling me that my agency was ceasing to come from this week and that they were looking for an emergency supplier. At 4 pm that afternoon, the social worker called me back and asked me if a 9-10am call would be okay. No. No no no. I told her I worked, I needed to be in work at 9 am; she sounded surprised. She knew nothing about me, my life, or my case a year and a half ago, which has since been in the national media. I feel like all the effort of last Spring was for nothing, my heart dropped.

Having said goodbye to my carer on Monday morning I waited by the phone to hear. No one contacted me, I tried calling back the social worker who had called me and got to a voice service.  I called the council’s central number and was put through to her, my current agency had extended until Wednesday morning because no new provider had been found.

Today is Wednesday.  I’ve been waiting by my phone all day, and come three this afternoon with no phone call, I once again called the central council helpline and eventually got put through to someone. ”I’ll be honest, we are struggling to find any agency to come early enough in the morning, do you know any?’ If I bloody knew any I would not be in this situation. He told me to give him an hour, be called me back: I have no carers for tonight or tomorrow morning, I need to contact family and friends to come and help me to bed, and he’ll get back to me tomorrow. 

So, I’ contacted the MS Society for.adviceand am revisiting the Victoria Derbyshire show on BBC Two tomorrow morning.  I don’t know if it will make any difference, or if I’m destined to have to do this every year for the rest of my life. Our social care system is so threadbare, so unable to meet demand, and so in need of attention. 

Wheelchair testing at Backyard Cinema

 

I was so pleased to be invited to Backyard Cinema SPECIFICALLY to check out their disabled access – it shows they’re not ticking boxes but actually want to be inclusive.

It’s a themed cinema, with different films showing every day (I saw Aladdin, because I’m a sophisticated grown up, and loved it). Add cocktails, beers and cinema snacks in the screen with craft beer and street food in a separate bar, and it’s a fun few hours. To be clear, I’m not giving away any spoilers. The current theme is the Winter Night Garden which sets up your entrance into the cinema regardless of which film you book, and it’s the same entrance for everyone, no back door goods entrance for wheelchair users.

There were a few issues which the team hadn’t considered and I’ve fed them back. They want to improve them though, and that counts for a lot. Being honest, for any wheelchair user used to navigating cities and new venues, it’s already accessible. I was being picky about the experience, the bar, toilet, doors, street food access… there’s no point being a wallflower right?!

The downside is that it’s in Wandsworth, South London. The nearest accessible stations are Clapham Junction (connects to nowhere), Vauxhall, or Brixton. That’s Transport for London’s problem but getting it in…

September (spasm-y) holidays

I’m nearing the end of my holiday across France, starting in the Alsace region bordering Germany, down to Burgundy in the centre. The aim was to chill, eat, and not think about work, catheters or social care for a few weeks. It’s now a joy just to have a break from the routine of carers getting me up – I’m here with family so getting up times are flexible, although without my equipment from home I’m worried I’m breaking backs. I’m choosing to ignore all MS plants plus fish diet advice while here… I’m eating enough cheese to feed a family, so there doesn’t then seem any point turning down charcuterie…

One thing that’s hindered my rest is the relentless spams kicking (literally) my legs up overnight. I’ll be woken up with my knee suddenly flying up ceiling bound; the cruel irony being that when I want to move them, my legs are like lead. It normally starts at around 4am, once my night dose of muscle relaxants has worn off, and especially staying in beds without any handles, it’s been difficult to wriggle and relax my legs after. I tried swimming in an outdoor, unheated, pool. Despite the sunny sky, I started shivering before my legs could stretch and had to evacuate. A welcome effect of the cold was the dexterity I had for an hour or so after in my right hand though; usually the claw, I could move each finger as fast as a musician!

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European Parliament, Strasbourg

At the start of the trip I visited the European Parliament in Strasbourg which left me totally in awe of the scope and vision of the EU (plus it’s a cool building). The film at the end setting out the purposes of the EU within the pressures of globalisation left me tearful! Securing safe energy and food resources, managing climate change and protecting human rights… working as a block of countries with common values and democracy. We are so much stronger together. Brexit makes me sad. The building is of course all accessible, a quick tram ride out of central town, with 75 people let in twice a day. All that said, it’s been nice to have a break from Brexit news (I’m not sure there’ll be any new news on return).

A few days left till real life and both my salaried work plus the unpaid day job of disability resume: chase wheelchair services, organise training for my carers and I on my new home care equipment, book in my catheter operation… For now I’ll keep staring at the scorched brown fields.

Catheters… the least bad option

img_2129This year has been a wave of UTIs and ‘not quite feeling well’. My two night stay in A&E in May following an uncontrollable infection was reminiscent of 2013, when the hospital stay weakened me and left me walking with crutches. This year has been physically poor: I have struggled transferring in and out of my wheelchair and have not qualified the 10 metre walking test for my fampridine prescription. Following hospital discharge, I’ve been reintroduced to a urologist, and it seems like after a few years off, the focus is back on my bladder.

My bladder ultrasound showed it isn’t emptying, which I knew already; a few years ago I had a residual post pee volume of 300ml… now it’s 600ml (and that was after urinating 600ml, my bladder is big). My full bladder was coping okay until I got a UTI in January, and despite rounds and rounds of antibiotics, the fact that my bladder never empties fully means the infection is always suppressed, not eradicated. The bug I’ve grown in my bladder is now a nasty strain of E-coli, resistant to all but three antibiotics. And at a low level, it looks like my body is constantly fighting it. On top of that, one of my kidneys is now dilated (my bladder preventing it properly draining). Left unchanged, I’d finish with kidney failure.

So, the options. The nerves which instruct my bladder muscles aren’t working, and being unable to walk and stretch also inhibits bladder efficacy. Self-catheterisation is the best option on paper, “It’s like using a tampon!” male urologists have told me. I now refuse to see male urologists. For female readers – it is kind of like a really small bendy tampon in a really small hole which isn’t designed to let things in. I tried it a few years ago when I was mobile enough to get on and off the floor, and before my right hand lost dexterity. It was hard. And unless you’re doing it four times a day, it’s going to give you more UTIs than it prevents.

A permanent catheter then. A catheter through the urethra isn’t favoured by doctors or patients. It eventually stretches your urethra until, for want of a better phrase, nothing plugs the gap. It’s also uncomfortable and rules out sex. A suprapubic catheter is a plastic tube coming out of your stomach, allowing you to fully drain your bladder. When it was first suggested to me, I recoiled. It’s another official step downwards, my bladder shutting off. My urologist was proposing surgery the following week which I was in no way ready for. I went home and googled images of them – it looks like a gallery from some failed wartime medical experiment (the surgeon told me they’re all the bad ones… sure).

That was in July. Now, I’ve got used to the idea, I had to grieve a little bit, to shift my self image, and accept my physical decline. The reality is that I’ve lost a lot of strength this year, I struggle getting on and off the toilet, particularly as the day goes on and I get tired. A catheter would resolve that in most situations, as well as hopefully cutting out UTIs. There is a tiny piece of hope in me that once the UTIs are fully eliminated, I might regain some of the strength and mobility I’ve so scarily lost this year, and any glimmer of hope is welcome.

So no, of course I don’t want a catheter, just like I don’t want a wheelchair, or to have MS at all, but as anyone with a disability  or chronic illness knows, your definition of ‘choice’ changes, and I think this is now the best one I have.

 

 

 

 

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

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!)