Anger waves

I’ve largely become used to being disabled (which I think is as good as it gets, I’m sceptical of any one claiming acceptance or happiness with it, but becoming accustomed is doable). It’s only really in the last year, where I’ve felt more chilled out, that I realise how much anger I was carrying before. People expect upset, sadness, a kind of grief for your healthy life but, and maybe I’m a particularly bitter person, it’s the anger that really weighed me down. And I think it’s largely gone. I realise this only when the rage flares back up.

There are plenty of situations where I’m envious of people around me. Most in fact. Someone running for a train and leaping on. People going for jogs after work. Parents balancing babies and bags on their hips. Anyone going to an upstairs toilet. But I’ve generally become more zen. Partly through forcing myself to have some perspective (think kids in Aleppo for a start), partly through years of being coaxed towards mindfulness by different therapists, and against all my cynicism actually finding myself converted.

But now and then, off guard, the anger rises up, and I don’t know what the trigger is. A few days ago I was in Cambridge with my parents, and as we were pulling away in the car, a cyclist went past. A guy, guessing early twenties, with a grey jumper and blue beanie hat. And suddenly I was furious at the unfairness of having MS and my disability. I hated everything about him. I was sure he didn’t appreciate his health and freedom, didn’t deserve it, and even after he had turned down a side street I was still choked up. Why?! I’d been seeing cyclists all day (it’s Cambridge, there are more bikes than cars), and he wasn’t doing some impressive wheelies. He didn’t look like me or remind me of myself, there was nothing special about him. But at that moment, I hated him, myself, my parents, the car, everything.

It takes me by surprise and then takes a while to fade into sadness, familiar loss. The conscious part of my brain then kicks back in with it’s perspective and mindfulness. I remember when my legs started faltering being exhausted by my constant anger. So this is progress I suppose, But whether it will ever completely fade and what causes the waves I’m still guessing.

Disabled dating, a new challenge.

When my MS worsened and I moved into a wheelchair in 2015 I made two resolutions to fulfil by the time I turned 30 (arbitrary I know but it seemed a while away at the time). The first was to find and move into my own place, which, if met, would leave me living at my parents for a max of two and a half years. As I discovered, that wasn’t an easy process anymore, once all the adaptations and social care were added in, so good job I started early. In comparison then, the second, to go on a date; should be the easy one, I’d never had trouble getting interest before, sure being disabled would make it harder, but it could be a truly terrible date, with a guy I never see again to tick the box.

So I installed Bumble. I don’t want any awkward conversations or wasted energy so my profile includes the line “have MS, can’t walk, use a wheelchair”. I generally avoid photos of myself in my chair (I don’t feel it’s the greatest fashion accessory) but found one from a friend’s wedding, I guess it’s not as obvious as it could be but you couldn’t accuse me of deceit.

Encouragingly, some matches come in (on bumble girls have to message first and the man has 24 hours to respond). I’ve made myself a rule to message every match, just a ‘Hi how are you’, I’m not wasting time tailor making intros. So far, 22 matches, 0 responses. I’ve seen my male friends on dating apps: they scan through the photos and make a decision. It’s only when they get the match and message that they actually check the detail, and then, I’m assuming, freak out.

The full story (or lack of) on The Tab.

 

Handi-skiing

I loved skiing. The views, mountain air, speed, exercise, cool clothes, and food and drink culture. I learnt to ski when I was four and it was a regular family holiday throughout my life. I know it’s impractical and sentimental, but my ski boots sit in a wardrobe in my parents’ house – an old birthday present, brown and cream with grey  fur. I don’t expect them to ever be used again, but it’s too sad and final to get rid of them.

I’m not exaggerating when I say that it was one of the most painful things to lose when I lost mobility. Yes stopping walking and moving around freely is hard in a lot of ways, but a lot of it is a practical, daily struggle that I adapt to. Skiing is not a practicality, no-one needs to do it, for a week a year, it was purely for fun, and giving that up is an extra kick when you’re already down.

I’ve just returned from my second Alps holiday since being unable to ski. The first, two years ago, was when I was walking with crutches, and tried and failed to ski down a nursery slope. I cried on chair lifts and was angry at everyone skiing. My parents paid for me to try handi-skiing, and, unsurprisingly, it didn’t feel the same as skiing and I concluded it wasn’t as good (it’s also more expensive). I know people who have never skiied and loved it, and remember my MS nurse once telling me I could “still ski”, which infuriated me. Would you tell an ex-ballerina she could still dance when she swayed from side to side?!? It’s not the same, there are parallels, but I think hoping for a substitution set me up to fail.

So this year, I had different expectations. I was really looking forward to a family holiday, especially after a busy season at work. I was prepared to sleep, read, eat pastry, and look out at the views from the hotel window. I signed up to four afternoons of disabled skiing, but it wasn’t the focus of the holiday. And this time, it was great. I had a ski instructor who I got on well with, and after crying on him on my first chair lift (there’s no magic wand), the rest of the week was tear free. You’re basically sat in a cocoon which is suspended over skiis, with short ski crutches on each arm. there’s a rail at the back for the guide to use to ski you, so if you’re good (with a core of steel) there’s no rail, and the seat is on one uni-ski. He took me down black runs with him skiing me, and he was stricter about making me do blue runs myself. I therefore fell over a lot, which is normal on a snow holiday, I don’t want to be bubble wrapped. And that forced me to try harder, it was exercise, I was out of breath and exhausted by the end (a half day session is definitely my limit). I’ve accepted I won’t have toned thighs again, and my arms will have to be disproportionate, so was ready to use what I’ve got and save lamenting my old body for another time. We were lucky with weather, bright sun and blue skies, and it was a pleasure to be out in the mountains. It’s larely what you make it, if you don’t have the arm strength or energy to ski yourself, the guide can tour you and take you to view points or pistes you like. For the athletic, you can train to do it yourself on all runs, I’m not sure my balance will ever be up to that, so a mix was perfect.

The lesson is one I’m learning slowly, disabled adaptions will never be ‘the same’ as life pre-MS, and hoping they will is a sure path to disappointment. The truth is, the choice isn’t between handi-skiing and skiing, it’s the former or nothing at all. I’m planning to go again next year.

 

 

 

A drug that’s worked

I’ve got used to my medicated lifestyle, always adding more drugs to my repeat prescription whilst continuing to deteriorate. Muscle stiffness worse? Take an extra kind of relaxant twice a day. Nerve pain? Another tablet. The four years I’ve been on Tysabri have been a bloodbath, but my MRIs are stable, and the familiar reminder from my neurologists is that it’s not a cure, and it would probably be a lot worse if I wasn’t taking it. There’s no better drug available to me on the NHS (within my eligibility criteria set by NICE), and I’m certainly not willing to take a gamble coming off it.

My new neurologist referred me to the National Hospital for Neurology and Neurosurgery in London, specifically to look at muscle stiffness. A guy in my Tysabri ward had told me about the drug Fampyra, but when I mentioned it to my doc, he sensitively told me that it was for people with more mobility than me, specifically to increase walking speed. The consultant at the NHNN started talking about surgery and muscle relaxant pumps. I know it could all help, but it just seems too intrusive at the moment, I was mentally clocking out until she mentioned Fampyra. To qualify I needed to walk ten metres with a zimmer frame. Totally unconvinced I could do it (or even stand up), I moved to the start line. Pure stubbornness kicked in and I dragged myself down the taped line over five minutes; I returned two weeks later, repeating my time and was sent away with the tablets to take twice a day. Three days in and I started feeling I had more energy, transferring in and out of seats was easier, and I actually dug out my crutches, which were collecting dust at my parents’ house, and tried a few metres with them. To be continued on the drug in the UK you need to show an increase in walking speed; general symptom improvements don’t matter, so I was nervous that I wouldn’t qualify. Two weeks later and I was back in the clinic facing the white ten metre line marked on the floor. My speed increased 250%. Not only that, but to give an average reading I repeated it after only a few minutes rest. I was as shocked as anyone.

It works for 30-40% of people, and it’s unknown why it works for some not others (I’ve experience the flip side of these stats in most my other drugs). Let’s be realistic… I’m still pretty disabled and not skipping down hallways. But it’s helped, and it’s the first time, well, ever, that I’ve seen an improvement in my condition. The drug works by stopping potassium leaving damaged nerve cells so letting more signals pass, hence improves a lot of aspects besides walking. My main side effect has been insomnia, which having never had any problem sleeping came as a shock, but that’s bearable. What’s sad is that the prescription criteria are so binary, walking speed is all that counts, regardless of any other benefits.

The best part of this is that it’s lifted my hope in medicine. My urologist started me on Mirabegron about a year ago for bladder urgency which literally transformed my life (I can count on my fingers the number of times I’ve wet myself since taking it). But this is the first drug targeted at my MS and mobility which has had a noticeable effect. My whole family are delighted, it’s been really overwhelming to know how invested they all are (my godmother cried over the phone to my mum when she heard). Mainly though, my cynicism is slightly lowered, with a bit less resentment when I’m swallowing tablets every day, and a little more optimism in new drugs.

I did it… I’ve moved!

I did it, a year after completing the purchase on my flat, I moved in. EVERYTHING took longer than expected, there were so many unknown steps and barriers to cross to get the flat ready. To save the very boring detail, here’s a summary:

• Initially seeking guidance from an occupational therapist on what I needed to do. I did it because it’s my first time moving out now I’m disabled, I was clueless. Thankfully I’ve learnt not to do it again. It slows everything down. I was told to apply for funding for the work I needed…. it took weeks…. I wasn’t eligible.
• Converting the bathroom to a wet room. I would recommend any one able enough to become a plumber. They are turning down work left right and centre, for all but the most inflated quotes. And then finding one with the expertise for the wet room (placing rails, reinforcing walls where I pull my weight on them, non slip flooring). It took months.
• Which bed. My OT was fixated on a hospital bed. I declined it repeatedly. I wanted a definitive answer on whether I needed a profiling bed to receive homecare, if there were any specs I needed to follow. No-one knew. She kept recommending a single bed so carers could reach me from either side. But was this only if I need care IN bed? In the end I relied on my cousin who temped as a carer on her gap year (“I don’t think so… one lady had a king size bed”). That’s the best information I could get.
• Buying the bed. Once decided, my OT recommended I could again apply for direct payment towards the bed (for the equivalent cost of a hospital bed). She didn’t really know the process. It took months, and it was refused. I took to Google and found one supplier with a model in a showroom in North London. I went and tried, and received a quote for over £5,000. I was recommended Laybrook, thank you to whoever did so!! They quoted under £3k for the same thing, I’d recommend them. Obviously their showroom, in Bicester, is only open Monday to Friday (disabled people don’t work remember) so my parents did the journey to check it for me.
• Flat entrance. The block of flats I’m in is all step-free on paper, save a ridge of a few inches to get from the car park to the entrance door. I contacted social services, this work is funded (the cheapest of the required alterations at a few hundred quid but still, silver linings). BUT, I’m a leaseholder, so need freeholder permission. He in turn wanted to see the contractor’s insurance certificate. Back and forth, weeks and weeks…
• I won’t repeat my previous posts, it was all too tedious first time round, but getting homecare established, which is vital for me to get out of bed in the morning, took over four months. Meanwhile, I chased all the right people, emailed, phoned, filled in forms, and continued to pay council tax.

So, by the time moving date rolled around, I wasn’t excited. Tired, stressed, and scared more accurately. Scared that I wouldn’t cope, that everything I’d put in place wouldn’t be enough, and that I’d have wasted everyone’s time and thousands of pounds. It’d be great to say that when I moved, a huge weight I didn’t know I’d been carrying was lifted, and I smiled from room to room. That’s the storybook ending. I actually really miss my parents, which I never did when I went to uni or moved to London, and this time I’m only 15 minutes away. I have a flatmate, one of my oldest friends from school, and I’ve never really felt lonely (except, perversely, whilst in a relationship). I think I didn’t realise how close I’d got to them in the last two years living at home. But that’s easing off, and the relief and rediscovery of my own space is coming on gradually. The best part so far is feeling I’ve given my parents their retirement back; they can plan holidays again, and enjoy their lie ins. That was always the push when the flat lost its pull. And it’s made me happier than I thought it would.

Most of all, I’m really proud of myself. I’ve learnt how to do this now, and know I could move again if needed (though not in a hurry). That opens doors. It took a lot of help from my parents, and I’m still relying on them and my flatmate  for lifts to work while my new Access to Work claim is processed, but I drove all the changes and paid for everything myself. I’ve moved out before I’m 30 – my aim when I initially left my old life in London in 2015. So when dry January’s over, I’ll drink to that.

My last resort, my MP

Having lost faith in finding any carers, I wrote to my MP. It was more a rant than a letter, prompted by another especially frustrating exchange of emails with my social worker where she listed the ‘options’:

1. 1. Grant direct payments and search for carers privately… unsuccessful since August.
2. 2. Social services commission care and send requests to local care agencies. My social worker did this in September and none had any availability.
3. 3. I pay £200 to a care brokerage to search more widely.

It was option 3 that pushed me over the edge. Why on earth, when, as demonstrated by 1. and 2., there is clearly an undersupply of local carers, would I then throw £200 away searching!? Does anybody do it? The fact the county don’t pay for it tells you how fruitful an option it is. I’d rather spend £200 on a flight looking for a pot of gold at the end of a rainbow.

So, to vent mainly, I wrote to my MP. I don’t expect politicians to be able to magic up a workforce, but it at least draws attention to the problem from my euro-sceptic, Tory MP who voted for cuts to ESA (his track record didn’t soften the tone of my letter). Anyway, a few weeks passed, I calmed down, had a polite response from his secretary and moved on; and then came two answers. The first from my social worker, telling me that a care agency with capacity had been found, and could I arrange a meeting with them. A week later, a letter from my MP, enclosing a response from the county Director of Health and Community Services informing him that despite pressures on the service, a provider had been found. It might all be a coincidence. I really hope it is for the sake of anyone else in my position, but the whole process has made me cynical enough to doubt it.

Progress!! As I’ve blogged before, every step is many shuffles. I met someone from the agency who said I need a keysafe (a PIN locked box outside the flat), and equipment to transfer from bed before they can provide help. I’ve seen three diffferent Occupaional Therapists about equipment this year, none have mentioned it. Whatever, I’m going on holiday for two weeks, and then I might be moving!  I’m not ruling out everything falling apart in the mean time yet, everyone’s fingers crossed?

Where’s the safety net?

I’m still on the search for carers (or personal assistants as described to me). Whatever the title, I can’t move into my flat until there’s someone to help me in and out of bed and get changed twice a day. My parents have been holding the fort whilst I’ve been living with them, but they’re not getting any younger, and I want to move out. I naively thought there’d be some official structure of social care… having had my needs and means assessed, along would come the care required. You think I’d learn.

The Direct Payment Support Scheme put ads out for me, my mum even went to local GP surgeries and charities to share them too. I was dubious of the process when it started but, this is the first time I’ve done this, so knowing no better I went along with it. Two responses. The first, a man of at least 40 (he did O-levels). I’m sure he’s a very kind and helpful guy, but helping me dress in the morning? Just no. The second, a young woman, hopeful I called her up; she is actually only looking for care home jobs. I don’t have the time or will to question why I was forwarded her details.

So, what now? No seriously, WTF? How is this the proper process? Is needing help a new phenomenon? Disability a millennial creation?! I’m lucky I can rely on my parents for now, where’s the safety net for people who can’t??

I’ll call social services back next week, then wait a few more for their response, meanwhile paying the mortgage and council tax on a flat I can’t move into. The more I delve into ‘the system’, the more I realise there isn’t one.

Sharing is caring

Wondering how moving out of my parents is progressing? The project which has been ongoing for about eight months now, like an unfinished piece of coursework with no deadline. Everything’s underway, as it was six months ago, but with every step forward comes ten mini shuffles to be completed, which you only find out about when you get to them. So, other than a few busy weeks at work or time on holiday, I’ve been pushing forward as fast as I can… what the frick do people do if a sudden accident/injury means they’re in a rush?!!

i’ve had my financial assessment for care, and been granted direct payments. By an unexpected means testing miracle, employment income is excluded from the means test. I assume the reason it’s not published ANYWHERE online (many a stressful google search) is so it’s easy to alter and repeal. But that was a looming stress which had me thinking about giving up work unnecessarily. I have no savings (put into the flat) hence receiving funding. Fab. Tick. Can I move in yet?

Not so fast. Direct payments involve the council granting you money every month to effectively employ your own carers, the idea being it’s more flexible that way, and cheaper than using agencies. I had a meeting this week from my local Direct Payment Support Scheme, who I was referred to (see what I mean about the little shuffles?) to start this process. Useful yes, but raised more problems than it solved:

1. My care assessment describes 7 X 1hr45 visits, with total funding of 7.5 hrs per week. Yes I’m an accountant and it’s glaringly obvious that doesn’t add up.
2. There is no magic route to finding carers, the advisor will help, but at one point suggested putting up adverts in local pubs… I managed not to laugh or cry.
3. Going to work Monday – Friday means I need a reliable morning routine. I mentioned this as an aside, and it seemed like a sticking point. It’s literally my minimum requirement; when am I going to stop feeling like disabled people who work are an inconvenience?
4. Asking for support from my local MS charity was suggested over and over. I’ve been sent on too many wild goose chases to benevolent organisations to even feign support for it. Weeks have been spent pursuing well intentioned but circular referrals and suggestions. The specialised physio available 9 to 5 on weekdays is a good example, forgive me for thinking there aren’t that many working care users visiting the centre.
5. Have I thought about employing my mum? That sounds like the opposite of moving out.

“I can sense that you’re getting a bit fed up with this”, the advisor wrapped up with. i think I lost my polite game face some time around May.

Glasto on wheels

I survived the swamp! Mainly thanks to some very supportive and strong friends, and realistic expectations. But considering a few years ago I’d written off festivals as exclusive to my old, fun, life, it was great to be there. I feel like the development of MS turned me into an old age pensioner for a chunk of my twenties and I’m rediscovering my life now. The hard thing with new situations is the unknown logistics – will there be toilets I can use? How will I get from A to B? How will I get out of bed? I did as much research as I felt I could pre going, but now having been, I know I could go again, and that confidence, which you take for granted when you have it, is invaluable.

A friend and I had hired a campervan (there’s zero chance I can climb in and out of tents now). The disabled campsite is well located, in between the John Peel and Pyramid stages, and has both tents and vans in it. It’s lined with disabled portaloos, and had dedicated campsite wardens on site to help answer questions. You’re allowed a maximum of 4 people with you, and that was one of the negatives. Part of the fun of festivals was the camping, sitting round tents with all your friends, the smell of fires and sounds of other groups around you. Campervans lined up without your friends sleeping in a circle with you isn’t the same, so there was less time chilling and drinking in a campsite.

The disabled facilities are pretty incredible though, there’s a common sense approach throughout, and I’ve dealt with social services long enough not to take that for granted. Ultimately, you’re still living in fields; that’s the essence of the festival, so it can’t be 100% disabled friendly, and I was unlucky with the weather. The ground was already ruined when we arrived (we had to be towed in), and 200,000 people walking over it didn’t improve it (or ‘squash it down’ as was my wishful thinking at the start). Where there were boarded walkways in the main stage areas, the scooter I’d hired coped, but the southern side (Shangri-la, The Park, the Healing Fields) were sadly off limits. Those are the parts of Glastonbury which make it more than just a standard music festival, add diversity and weirdness, and where I spent most of the festival when I went pre-disability in 2008. There’s a bus every few hours from the disabled campsite to these corners, but this wasn’t reliable, and, once there, the ground was too swamped to explore. A steward told me it was the wettest festival in 15 years, so in a dry year the reachable areas of the festival would double.

I’d hired an electric scooter in advance from Fair Mobility (linked on the Glastonbury website) which was charged overnight at the disabled campsite. I couldn’t have attempted the festival without this (I did see some people pushing manual wheelchairs around and think I’d have lasted about an hour, and severed some friendships in the process). On the solid walkways it was great… in mud, the wheels spun and my friends had to push it more likde a toboggan. The muddy wheels also drained the battery and we had to be rescued by on site crew in buggies a few times. The struggling battery restricted some freedom, but short of mini hovercrafts (or, while I’m wishing, a cure to MS), I think you’ve just got to accept that if you can’t get around, you’ve got to park up in one place and make your own fun there… this is where awesome friends come in.

The main stages all have viewing platforms which were a lifeline, especially as they all have disabled portaloos adjacent to them! SO helpful, I’d almost forgotten what it’s like to watch a gig and be able to drink beers freely without worrying about getting to a toilet. I had just one must see per day (Sigur Ros, Adele, Beck) who I saw. On top of that, because of how hard it was getting between stages I saw some surprise highlights (Jack Garratt, Tame Impala). Oh, and ate all the food.

I couldn’t have gone from regular to disabled Glastonbury goer back to back. The transition to, and acceptance of, disability has been slower than that, and the contrast between what it was and is now too great. The increase in cost is also pretty eye watering (hiring the camper, and the extra £100 for a van space on top of the £250 ticket). But am I happy I went, did I feel more like myself, have I made memories for life, and would I go again? Yes to all.

As for the referendum, I, along with others around me, cried at the results on the Friday morning of the festival. I’m still shocked, angry, and incredibly sad about it. Now waiting for the dust to settle to see what plan Brexit looks like.

The countdown

It’s a BIG week…

1. The EU referendum. I wasn’t really taking it seriously until a few weeks ago when the polls showed ‘Leave’ gaining ground. The EU has done so much for human and worker’s rights…. and therefore disability rights. The Equality Act, which implements EU Directives on equal treatment, has been quoted to me by successive HR department, and requires not only equal treatment of disabled applicants or employees, but binds employers to make adjustments to provide extra support for them. Flexing hours, working from home, and frequent disabled toilets are all things I can rely on in an office job, which allow me to keep working. It’s that extra layer of protection against any short sighted changes a UK government would want to make to UK laws. Here’s hoping we’re still in the EU this time next week.
2. Glastonbury… it’s here!!! I’ve rented an electric scooter on site, hired a campervan, and received my pass to the disabled campsite. I’m packing antibiotics in case of a rogue UTI and I’ve got plenty of beer and wet wipes – what more can I do?! It could be awful, it might be great, I’ll let you know.