I had a suprapubic catheter inserted last October, long time readers will know the battles I had for years with UTIs and their seemingly permanent impact on my MS.
My reason was simple: pre operation I googled and googled, desperate to find out more about this thing being so nonchalantly discussed by urologists; the results were limited and off putting. It’s not a part of my life I particularly love broadcasting, but no one does, despite bladder problems being especially common in MS.
It took so long to post because my skin is STILL reacting around the catheter site and I didn’t want to add another gruesome photo to the search results. If it’s useful for one person, that’s enough for me.
Being disabled is the most tediously difficult full-time job in the world, and it’s unpaid. The pandemic lockdown actually provided a respite from all the crap we have to deal with, but clearly offices are open again now and back out in full steam.
I’ve felt harassed from all angles over the last few weeks. Some of it, like my boiler breaking, and the plumber cancelling and rescheduling for weeks later, is just regular life bother. I’d call that ‘layer 1‘ of stress, which I can largely deal with, it’s all the other shit on top that gets to me.
So layer 2: managing my health. The skin around my catheter, which I’d finally thought had healed, has again erupted and torn. Cue arranging for district nurses to once more come and review it – you’ll never be given a time, but just have to keep all day free for them to pop in. It looks like my skin is allergic or reacting to something, but I’m going to have to see a specialist urology nurse to get to the root of the issue, which is another thing to arrange. I knew I’d been weak, but started getting headaches and feeling sore in my back, for me the familiar signs of a UTI. It’s harder to be sure without bladder urgency but I could see that my urine was cloudy. So I called the GP and arranged a urine sample to get tested. Back to nitrofurantoin, I definitely haven’t missed these antibiotics which give me constant nausea. It’s disappointingly my first UTI since I had a catheter inserted last October, so it think it’s just the manifestation of being run down.
So then we get to the worst layer, layer 3, which is the unnecessary stress and admin that you have to deal with as a disabled or chronically ill person.
Moving home to my flat meant being reacquainted with my care agency, let’s be clear, 90% of the carers who come to see me are lovely, but it’s not that simple. My call times have been inflexibly stuck at 7am to fit in with the morning rota, which was fine when I was going to work, but when I’m working from home every day it’s really unnecessary. But whatever, this is my contracted time, I get it.
My carers used to stretch my legs first thing in the morning and last thing at night, nothing major, just bending them and moving them from side to side to help release spasm. Apparently that constitutes ‘exercises’ which my carers aren’t trained in, and the care office says no. All carers have been told they can’t do them any more. It’s nonsense. They bend my legs just to put my shoes on, and I don’t see how this is any different. But I also know it’s a fight I can’t win without massively escalating it, which I don’t have the desire to do. I’ve gone back and forth already with my care office who seem set on the idea that they are exercises which should be administered by a physio… Anyone got any similar care experience?!
And that’s not all, my NHS wheelchair cushion cover ripped. It’s never a simple job of just getting a new one sent out to me, I’ve had to wait in phone queues, had a technician out to assess it, and then had to call again to ask if they received it and arrange delivery… all for a cushion cover. A CUSHION COVER.
The pharmacy where my parents collect my repeat prescriptions for me have said my prescription is now due a doctor review. These are my twice daily muscle relaxants which I have taken for years. Can the pharmacist just call my GP surgery to confirm that I still have MS and still need them? Of course not.
I’ve also been getting persistent texts from the Royal Free Hospital asking me to sign up to their new patient portal online, I have zero faith that it will work, it’s just another way of pushing the onus onto the patient.
My care agency left me a review form to fill in ‘in my own time’… It went straight in the recycling bin.
I want to scream and knock people’s heads together so much it infuriates me, and it brings me to angry tears. I already ignore as much as possible, but I truly resent the constant burden placed on the patient. I know people have to be kept in work and kept busy, but can’t they direct their bullshit elsewhere?!
This morning I had a long awaited second opinion on my MS treatment. I started Tysabri in 2012, and the acceleration of my condition over these eight years terrifies me. At the time it was the only effective disease modifying drug available, and now there are others, and I was desperate to hear that I could change this trajectory.
I have battled to get this consultation from a different neurologist, after receiving the appointment I chased to ensure my MRIs and information were shared across to his hospital (there is no central NHS system, it’s all according to different NHS trusts). I had done my research on other licensed drugs (Lemtrada, Ocrevus, HSCT) and had my list of questions ready. I know that Tysabri is a highly effective treatment on paper, but I’ve never felt like it has been for me. I was anticipating something, anything, from the review; I’d been building up to it for months.
The first hurdle with a new doctor is to try and stress what’s changed. Due to Covid restrictions the appointment was over video – certainly better than a phone call, but still limited. It didn’t matter, I had my disability and accompanying dates written down ready to reel off. He listened, patiently took notes, and then calmly explained that my MRIs showed increasing atrophy and tissue loss around my spinal cord… but no new lesions. Because of that, the Tysabri has done its job, and I am not eligible for any other drugs.
All the other questions I had planned were therefore void. My voice started cracking and my eyes watered. He gently described the clinical effectiveness and eligibility of the different drugs in terms of nerve inflammation and progression. The point which I tried to articulate is that I know there are no treatments for progression, I know that I am on a powerful drug, and I know that no new MRI lesions is positive. But the mechanics of MS aren’t well understood, and different drugs work differently, so wouldn’t it be worth just trying something else?!
That’s not how prescribing expensive drugs works. My MRIs are meeting the criteria against which Tysabri is licensed. I hadn’t even noticed how far I was subconsciously building anticipation for options, for change. When the call ended I sobbed viscerally, loudly, uncontrollably, like I haven’t in years. I hated seeing the pain on my parents’ faces (I’d asked my mum to take notes next to me, I was so naïvely sure that there’d be things to consider after), but I couldn’t hold it in.
So there we go. I feel like any light at the end of the tunnel has gone out; regardless of what new drugs may come on the market, they won’t apply to me. Years with MS have taught me stoicism, and I’ll pick myself up. That’s a job for tomorrow though, I’m out of resilience today.
I think it’s week nine of lockdown. I moved into my parents home fairly early on in the process because of the blatant risk present from my carers. They had no PPE, it wasn’t even being talked about, let alone the subject of testing, so if any one person they saw was carrying the virus we would all catch it. Sadly, due to the huge death rates recorded in care homes, media and thus political attention started to turn to social care. I chipped in to a few tv and radio interviews to hammer the point, but it’s really terrifying how long it took for the risks of social care to get on the radar, and the focus is still heavily aimed towards care homes.
In general lockdown life is not so different for me, and it’s been massively comforting to hear this screamed by disabled people from all corners of social media. Not being able to go where, or do what I want is a permanent feature of my life, so frustration and isolation are inevitable. My approach to coping with it in recent years has been to have regular holidays booked, so there are always a few days of escapism on the horizon. So having had some of my favourite bands perform YouTube concerts, being able to view theatre shows online, or simply having friends and family all catching up virtually has been great. One of the weird pleasures of the last few months has been simply feeling the same as everyone else. Disability is inherently lonely because most people aren’t disabled. There’s always a separate way to enter a building, a different queue at events, or a unique booking process. It’s generally impossible to blend into a crowd. But recently we’re all in a similar situation, with government advice relevant to millions of us; of course I’d rather the cause was different, and I know the universality will soon change, but for now it’s been nice.
The one massive negative I am facing is the physical impact of all this. Two months without physiotherapy, swimming or yoga have really taken their toll. I have attended and paid for weekly physio at the Hertfordshire MS Therapy Centre for years. The combination of specialised equipment and staff who can deal with the stiffness and weakness of MS is hard to find. Pre-lockdown I’d also been receiving an NHS course of physio, specifically as rehab to regain some of the strength lost last year, but I know the progress I had slowly started to build has dissipated. It’s not something I can do by myself, both my physio and yoga teacher lift my limbs to pull and stretch me. I’m thankful for the electric bike which I wrote about in my last blog, still on grant, which I’m using every day, and I’m doing what exercises I can, but it’s obviously hard to work my whole body. I am so very envious of people who can go for walks or bike rides to maintain themselves. I can’t remember the last time I had a full night sleep, it was at least six weeks ago; the spasms in my legs are waking me nightly, leaving my legs painfully curled up. I have intermittent cramp and reduced movement in all but my left arm, and the shaking clonus in my legs is regularly unbearable. The MS Society put me in touch with a journalist from the Guardian who was making a series of ‘less visible’ problems caused by lockdown. Of the many clips I filmed for him, it was my grumpy account of yet another bad night’s sleep which made it into the final cut, so I guess it’s a valid complaint.
I suppose I’m often quite negative about the little exercise I can do, finding it hard to believe that it’s making any difference. I can at least say now that it does. The longer this goes on, the more fearful I am that my return to the swimming pool will be cataclysmic – I’m going to swim with floats, and very near to the edge for sure. I can’t even be certain that I’ll have the ability to function in my flat on my eventual return. Shops and bars reopening mean little to me, but I can’t wait to feel the feedback from my muscles post exercise and quieten the panic that my limbs are withering. Mostly, I can’t wait to wake up after a solid night’s sleep.
I was fed up a month ago, if anything I just feel like now the rest of the world’s population is too.
I’ve written before that last year was a bad one for me. Following a year of serious infections, hospital inpatient stays, and insertion of a suprapubic catheter, I lost a lot of strength. Transferring between chairs, in and out of cars, and onto the toilet became impossible. The mobility clinic at the National Hospital of Neurology in London were sympathetic when I saw them in November, But made it clear I was on the final straw before being discharged because I had decreased so much. As a last attempt to boost me, they referred me for intensive inpatient physiotherapy and a grant of an electric pedal machine. I was optimistic, nothing teaches you to cling to hope like a chronic illness.
THERA trainer
It didn’t last long, I was refused for inpatient physio on the basis that although I should have had it on discharge from hospital (either time last year), they couldn’t accept outpatients without ‘complex’ needs e.g. MS AND an amputation. One isn’t enough. Anyone experienced with social care or the NHS has learnt how to complain and fight, so following that, a physio started visiting me as an outpatient and it’s been really hard work, but I was starting to see some small improvements. I also received a grant from the Ladies’ Samaritan Society for a three-month loan of a Medicotech electric bike. Then BAM, the corona virus hit the UK: my physio visits have stopped, the swimming pool has closed, and I’m again struggling. Thank goodness the bike was delivered before the 12 week isolation, it’s going to be my lifeline. It’s motorised, although obviously you can try to push yourself and increase speed. But even if you don’t, just the feeling of having blood pumping through my legs and feet is so good. The speed and direction are adjustable, and leg splints keep your knees from folding in together. My legs feel weightless and spasm free after ten minutes, not the rigid weights I’m used to. It really couldn’t have been delivered at a better time.
My social care experience has continued to be arduous. Following a risk assessment it was decided that two carers were needed to operate my standing aid rather than one. Fine in itself, but it means that my call times become much more inflexible. It’s a struggle to get one carer here on time, let alone two. Having two carers is also unpleasant, there’s always a kind of micromanagement battle where you have two people trying to dress you at the same time, or each telling the other what they are and aren’t allowed to do, and if they don’t get on it’s even more tiresome. I’m a daily witness that two people are less efficient than one… My back-up option has also been questioned, were my electric standing lift to break or my mobility decrease such that I couldn’t use it. I think having a progressive illness you’re resigned to deterioration, it’s never a case of ‘Plan B’, the scale goes right through to Z, and there’s no point trying to predict the rate or scale of change – it might not happen, or I might need full time care very quickly. No doctor can know. But anyway, I’m going along with it if it means people will just leave me alone. I can’t have a ceiling hoist fitted because I live in a flat, so the other options are more industrious, and there’s an issue of funding; I don’t qualify for a grant from social services because I work, so it looks like I’m going to have to pay over a £1,000, for a hoist which won’t get used, and I don’t want. Disability isn’t cheap.
And then we come to the corona virus. It’s scary for most, and a lot of people are feeling restricted and lonely by it. I get that everything is relative to each person, but for the ill and disabled people out there, it’s more frustrating.
I can do all the isolating I want, but the fact remains that I now have four frontline care workers coming into my flat twice a day. The carers don’t have any extra protective equipment like masks or aprons, just gloves. I also am still receiving my MS drug, Tysabri, every four weeks at hospital, so I feel like I’m more exposed than most. The lack of protective equipment for frontline workers in our hospitals has been rightly highlighted in the media and people are outraged, but our social carers are in the same position, travelling between the homes of vulnerable people, and it’s impossible to stay 2m away from someone who is helping you dress. Due to that I’m going to move in with my parents during the lockdown period, however long that turns out to be. They’re in their sixties, it’ll be physically hard for them. Plus with my past experiences I’m terrified of losing my care contract afterwards. But against the risk of Covid-19 I’m doing it.
I’m normally envious of people who can go out for jogs and walks, I’ve gotten used to it. But even more so at the moment. In fact how lovely to be told, that despite having to stay inside with your household most of the time, you can still do this?! Relying on external people to help me out outside the flat, I actually am not able to leave. And I think that’s the hardest part – I’ve been listening to more music than normal, just to have some escapism (you know you’re fragile when you start sobbing to Avril Lavigne, so I’m trying to keep it more upbeat).
I want to scream every time the TV, radio, or work emails talk about how important it is to keep exercising. We all know this. Is it really a revelation to anyone that they can exercise within their own home?! Sure, they’d rather be out playing team sports or going to the gym, but seriously, pass me a violin. The exercise I can do on my own is limited, more so while the swimming pool is closed. I’m doing what I can, but it’s hard. Able-bodied people who can follow the Joe Wicks morning exercises or go out for a jog need to stop taking up air time.
We are being equally bombarded by messages about maintaining mental health during lockdown. I’ve been submerged by messages from friends and family asking me how I’m coping. Social distancing, isolation, boredom, and frustration have been part of my life for years. I appreciate the messages now, but all that’s changed is that I’m scared of getting a virus which would knock back my MS, even if it doesn’t kill me. The rest isn’t new.
IT’S BEEN TWO WEEKS IN THE UK. People are acting as if they’re being banished to a cave for a lifetime. What I’m dreading is when all this goes away for everyone else and life resumes as normal. People will forget how it felt. Don’t get me wrong, I’m terrified of catching the virus, or needing hospital treatment for any other issue at the moment. But aside from that, there’s a kind of schadenfreude in everyone having to be restricted and not feeling like the odd one out. Don’t judge me, you know you were thinking it.
Ski 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…
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.
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.
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.
After 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. 
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. 
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…
All the other questions I had planned were therefore void. My voice started cracking and my eyes watered. He gently described the clinical effectiveness and eligibility of the different drugs in terms of nerve inflammation and progression. The point which I tried to articulate is that I know there are no treatments for progression, I know that I am on a powerful drug, and I know that no new MRI lesions is positive. But the mechanics of MS aren’t well understood, and different drugs work differently, so wouldn’t it be worth just trying something else?!
I think it’s week nine of lockdown. I moved into my parents home fairly early on in the process because of the blatant risk present from my carers. They had no PPE, it wasn’t even being talked about, let alone the subject of testing, so if any one person they saw was carrying the virus we would all catch it. Sadly, due to the huge death rates recorded in care homes, media and thus political attention started to turn to social care. I chipped in to a few tv and radio interviews to hammer the point, but it’s really terrifying how long it took for the risks of social care to get on the radar, and the focus is still heavily aimed towards care homes.
Ski 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.
After 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.
It’s unbelievable, even to me, but I’m in the position I was in 
