A slow hello to 2019

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

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

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

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

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Front page for the MS Society

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

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

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

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

When your body says ‘enough’

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

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

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

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

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

Vilnius

Vilnius

Jon Hopkins

Downing Street

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

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

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

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

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

C A N A D A

World’s tallest totem, Victoria

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

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

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

Lake Minnewanka

Banff hot springs

Lake Louise

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

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

Quebec city

Dream wet room

Montreal

Quebec city

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

 

 

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

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

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

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

The blog is live at Scope here.

News flash, it’s really hot

As anyone within this static block of high pressure sitting over Europe is probably sick of hearing, it’s really really hot. The most consistently hot summer of my lifetime, rather than the three day heatwaves us Brits normally get frenzied over, it’s been over a month of 30°C plus (I know some of you from more exotic parts of the world think that’s nothing… but England is not built for it). I try not to be a complainer, and I love the blue sky and sunshine, but this heat is making this summer hard.

The worsening of MS (and other neurological) symptoms in heat is labelled Uhthoff’s syndrome, some are affected more than others, as ever I’m one of the lucky ones. I think my cut off is 23°C, above which my body seems to go into Low Battery Mode and just… stops… working…

• Vision – One of the first things to go. Blurred lines start appearing and everything goes hazy. This sometimes happens at work when the office warms up and I stick my head infront of my desk fan, but it’s harder to combat right now.
• Fatigue – My body feels like it’s made of lead. I am constantly ready for ‘a quick nap’ which turns into two hours. I’ve resorted to power naps in the disabled loo at work under a ten minute alarm. I have tried THREE times this week to listen to a podcast in bed and each time fallen asleep within minutes (it’s me, not the podcast, I can normally listen to Frank Skinner for hours). This week I was in bed by nine determined to read… I think I got as far as reaching over towards my book before giving up.
• Weakness – My right arm has morphed into the claw, my legs deadweights. The last few physio sessions I’ve had have been largely passive, my usual minimum level undercut by some way. My progress with FES and walking has disappeared, I just can’t move my feet; it’s so frustrating when earlier this year I’d really built up strength and have now lost it.
• Bladder urgency – Just when you need to drink more fluids, my bladder control is at a UTI level low. Beer gardens are definitely not an option.
• Clonus – The uncontrollable shaking of my legs has reached new heights. Even my normal remedies of stretching, massage, and alcohol aren’t working.
• Eating – Eating makes you hot. Hot food is like entering a sauna, and eating is now a physical challenge where I need an ice pack over my head after a meal. Hot drinks are gone, I can’t even stomach a tea in the morning, who am I?!
• Swollen feet – It’s a cruel catch that when I want to wear sandals the most, my feet inflate to red balloons, unrecognisable from those of an average 30 year old’s. The best remedy is to move them about, get them elevated, and cold. Practical in a wheelchair right.
• General appearance – Technically I’m being vain having swollen feet as a distinct point here, but seriously, self esteem feeds into general wellbeing so it matters. I’ve long bemoaned the migration of muscle from my legs to my arms, and am largely now at peace with the fact (let’s face it, without strong arms I’d be screwed), but must I keep parading them? When facing elevated fatigue and hand weakness, showering and washing my constantly sweaty hair is physically demanding. Getting my legs waxed turns into a mountainous task. I warned you it was vain.

I saw my neurologist for my MRI results a few weeks ago following my suspected relapse in June, there’s debatable new damage with two radiologists giving different opinions. So it could be worse. My neurologist’s conclusion: we can’t make an assessment until it cools down, so wait a few months and we’ll review then. Tick tock.

Refinding my normal

What a whirlwind the past few months were, and not the fun, rollercoaster, big waves on a beach kind, more like speeding traffic when you’ve got no seatbelt or map. But I think the stress and adrenalin kept me pushing through in fight or flight mode, and then only once my social care was sorted did my body seem to let go.

I spent ten days stuck to any chair/seat/toilet I was on and unable to transfer. I fell over about five days in a row and had to call neighbours to help me up (just in time for the warm weather, my legs covered in bruises). I could not move my feet, let alone walk with a frame, and my physio knew something was different. By coincidence I had an appointment with my local MS nurse that week, who checked my blood and confirmed no infection. So we’re treating it as a relapse. I’ll be spending a wild Saturday afternoon today in an MRI scanner assessing the damage.

At least this time I feel like I’ve dealt with it properly, I’m not taking credit for it – my MS nurse appointment was complete fluke. But when I think back to 2014, the year I moved from crutches to a wheelchair, I spent the year in freefall, with what was in hindsight probably a mix of UTIs and relapses. I didn’t have the support structure built up around me at the time to follow the right MS process, nor the knowledge to assess what was happening or what I should be doing. I’m picking up now, still not 100%, but for the first time in weeks managing to plug my FES in and take a few steps. Now it’s just a matter of patience (not my strong point) to see how I recover.

In other life, my counselling course finished thank goodness, I found it utterly draining and not enormously helpful. I don’t really want to talk through my issues – that’s what I do here and your support is far more effective. However, as a tick box exercise it’s opened the door to future clinical psychology or antidepressants if needed, so I guess at least I got it out of the way. Having lost the constant preoccupation of my ongoing social care, my subconscious seems to have woken up and I’ve been having the most vivid dreams every night; I hadn’t even noticed their absence. So hopefully there’s some mental restoration going on too.

Mostly, I feel further desensitised to other problems. My taxi company who take me to work suspended my account last week, after a bad morning mid relapse where I fell and the driver then left my wheelchair cushion on his car roof for it to fly off mid journey. So I need to organise how I’m getting to and from work now… annoying and tedious, a hassle for sure, but not really a big deal. Work tensions barely touching the surface. Renewing home insurance? Practically enjoyable. What I need to do this summer is find fun, real positives rather than just an absence of negatives. I’ll put that on my to-do list. Maybe a few more naps first.

My story summarised for the MS Society here

A small victory in a much bigger care battle

Thanks to all for the support over the last month, be it friends, charities, or journalists – we got there. Two days before the extended deadline given by my old agency a new care agency was found, visiting at the times I want. The paperwork isn’t fully finalised yet, we still need to cross the t’s and dot the i’s, but I’m fairly confident it can’t fall through now.

A social worker I hadn’t spoken with before called me to announce the good news, I asked him how he found them: ‘Honestly? My manager told me to work on it as a priority, so after exhausting all our approved suppliers, I started ringing all agencies in the area in alphabetical order, I got to M and found you one’. They’re a small agency who mainly do live in care which is why I hadn’t heard of or tried them. And I’m assuming that because they’re not a regular approved contractor with social services they’re more expensive. I get that state money should go to tender, and the cheapest contractors found, I get that public funds would be open to abuse otherwise. But the fact is that if social care were better funded, the cheaper providers winning social contracts wouldn’t be squeezed quite so tightly, with their carers afforded better hours, breaks, or pay, and then maybe they wouldn’t struggle so much with staff retention and shortages. A lot of contingent maybes on a very macro problem; but what’s for sure is that the current system is broken.

It can’t be acceptable that I had to go to my MP, national and local press and charities, to get this resolved. I doubt I’ll always have the capability to, it took enough of a physical toll on me this time. My physio session yesterday was the worst ever, I think I’m now recovering from the fatigue, but my limbs are still very weak. I’m crossing my fingers it’s the start of a UTI not something more sinister like a relapse or progression. Am I just supremely unlucky to have been in this situation? Or is it quietly happening all over the country? The Care & Support Alliance suggests the latter – a group of 80 charities, including the MS Society, campaigning for a properly funded care system. You may have received an email from the MS Society with my name amongst others listed at the bottom, asking you to sign an open letter to Jeremy Hunt ahead of this summer’s Green Paper. I joined the campaign group long before my problems started, but please sign it here.

I’m so far being visited by the co-ordinator of my new agency so she can assess me before sending out staff. Having a new carer is stressful in itself, a new person in your most intimate space, needing direction on what’s instinctive. And given everything that’s happened, I’m grateful just to have a reliable carer visiting to help me function each day. But the first few days were hard. She was nervous and hesitant around me, and scared of me falling over. If falling was the worst part of my day, life would be very straightforward. I do fall over frequently, what I can’t stand is fussing or panic – I’d rather someone do the wrong thing calmly. She confirmed my requests back to me several times. I detest repeating myself. In the first few days I found myself close to tears at points as the familiar wave of frustration hit. On my first morning call with them, just getting up and ready for the day took nearly two hours, I don’t want to drag out just starting my day for so long. It’s got faster and better, but I’ll be handed over to a regular care worker next week to start again. Time is the best remedy available to me. Which now I’m not on a burning platform of limited care is one thing I have.

I’m due back on the Victoria Derbyshire show on BBC2 at 10.45 tomorrow for a quick Skype update, they had a big emotional response to my last appeal with the MS Society which can only be a good thing.

Care update – pressure’s on

I’ve thrown everything at this, having hoped beyond hope I wouldn’t have to, at least now I can say that I couldn’t do more.

My story was the focus of Frances Ryan’s article in the Guardian yesterday.

I’m heading to BBC studios this morning to be interviewed and featured with the MS Society on the Victoria Derbyshire show.

My local council and care agency have all been contacted to comment and so far, my current care provider have given me a week extension in care. The reality is there aren’t enough carers, no one can magic them out of thin air – so how much this will all personally help me I don’t know.

But the voice in my head says that if I’m not doing my best to fight this and make it public, then who is?? I know there’s a bigger problem than just me, so wish me luck.

The interview has been recorded and shared on youtube by Gavin Giovannoni.

Ten days left of home care… then what?

Further to my post in March about my looming cut off for finding a new homecare provider (after my current agency gave three months termination notice, ending May 11th) things have unbelievably got worse.

At 3pm on Friday, my social worker contacted me to tell me that if no agency could be found in the next two weeks, I would need to move to a residential care home, therefore could I be more flexible with times. Instant tears. The justification is that I’m being difficult, refusing offers. I’ve received two offers. One of them 9.30am and 6.45pm. My house bound 90 year old Grandpa wouldn’t accept that. There have been no specifics of which care home, or where. It’s not like beds in homes are readily available either. It’s ridiculous, but nothing surprises me anymore. And if it happens, I cannot stomach the thought of starting again.

I was in hospital for my Tysabri IV at the time, so MS was consuming 100% of my life. The silver lining (trying very hard to find one) is that my lovely MS nurse was there and saw me, and is now involved too. She has called my social worker and my senior consultant is also now making calls.

My social worker has since asked if she can contact my employer to discuss shifting my hours around ridiculous call times. I work in a professional environment and need to be working with colleagues. It’s not shift work. Fatigue kicks in at around 4pm and I can’t do much more. So no, shifting my hours isn’t an option, either professionally or practically.

I reluctantly spent a chunk of my weekend writing to my MP, Bim Afolami, a new MP since my contact in 2016. I’m independently contacting care agencies in the area to confirm they have no suitable availability. I’m asking for a 7am call, 8am at weekends, and 8.45pm bed calls, nothing controversial. I’m so frustrated at having to put so much work into just getting out of bed each day, I wish more than anything I could take such basics for granted. There just aren’t enough carers, the system doesn’t work.

I’m so tired of this. To the point where I’ve had moments of thinking that maybe actually, quitting work, cancelling all plans, and lying in a care home might be preferable. I can put up my best fight to live as independently as I can, but I was desperately hoping I wouldn’t have to this time, and am now resigned to it. I feel like I’ve been pushed to the bottom of a steep hill. Which is a scary position to be in when your personal capacity is limited. So, here I am again, with social care consuming all my ‘spare’ time and energy, and constantly on my mind. I’m exhausted.