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.

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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.

 

 

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.

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.

Counselling when there’s no fix

Remember last October when I was feeling completely wiped by fatigue and low? I bucked up enough at the time to get myself to my GP and ask for help, he referred me to some counselling sessions, and six months later, I’m having them.

There have been ups and downs since but the fundamental low thoughts remain the same. I had a course of counselling sessions in 2015 when I had a huge amount of change to process – using a wheelchair, moving jobs, leaving London, moving to my parents, ending a relationship. In hindsight I don’t know how I did it, and I think the counselling was mainly damage limitation at the time. But I remember useful snippets of it.

Now, three years on, I’m more settled, have grown more used to being disabled, so feel more able to isolate negative thoughts. I had the first of eight sessions of counselling with a nice woman, surely very experienced. I think one important merit of a professional external counsellor is just being able to vent. Reveal your most ugly thoughts without having to worry about the impact you’ll be having on the listener. I spend a lot of energy trying to limit the worry and hurt caused by my condition on family and friends. No need with my counsellor.

So I started, I got upset, I got mad about the unfairness of it, and I unexpectedly got carried into anger about people needing counselling for anxiety (I have several friends who’ve been in this situation). I know everything’s relative. I know children in Damascus have it worse right now. But it’s easier to compare myself to peers around me than strangers on the news.

So out came the verbal vomit of how I struggle to feel sympathy for anxious people with good lives. How I say all the right things but deep down I know I don’t mean them (and then feel guilty). How I’d love their problems. And my counsellor then started explaining how limiting anxiety can be. I didn’t need her to justify her job, nor am I completely lacking in self awareness to my insensitivity… for one hour couldn’t she be on my side?!

In session two I went in calmer, I’d given myelf a stern talking to beforehand. Counselling is only one person sitting with you listening and trying to help. Expecting someone else to have magic answers is a mistake I’ve seen others make; of course it fails. I think you’ve got to go in trying to find ways to help yourself, nothing can happen if you’re passive – even a lottery winner buys a ticket. When I didn’t like her answers, or got angry, or upset, I tried to think of why. She picked up common themes which I’m returning to: lack of spontaneity, frustration, a negative outlook. Nothing new to me, but interesting to see which topics spark them

I remain unconvinced, but having waited so long I know I need to try to get the most out of it, and I’ll persevere because people who love me think it’s important. But ultimately we’re all faced with an impossible conundrum: MS is unrelentingly terrible, and there’s no fix.

My homecare crisis

Nothing is permanent, nothing is secure. Especially not social care. I’ve been supporting the MS Society’s care crisis campaign, and as if to punish me, it’s become personal yet again. Carers helping me out of bed every morning are the fundamental life support which everything else in my life depends on. And now it feels like the rug is being pulled out from beneath me.

After a long battle I finally received a care plan and was able to move into my flat in December 2016. There have been annoyances and problems with my care agency, but whilst they could be better they could definitely be worse too, and life was ticking along. In February, I received a letter from them stating that due to staff shortages in my town, they were ceasing their contract, and giving social services 90 days notice. Stress. Fear. Panic. I spoke to them, I spoke to social services – I was told everything was in hand, a new provider would be found for me before the May deadline. I wanted to believe it so left things for a month, assuming it was being worked on behind the scenes, all the while thanking my lucky stars that I’m not a private payer who doesn’t get the 90 days notice and is left to sort it out themselves.

I received an email yesterday offering me a provider with a 9:30am morning call, and 6:45pm bed call. So this really confirms social services have no idea or consideration what my needs are, haven’t been working to find anything suitable over the past month, and are actually unlikely to do so unless I’m incredibly lucky in the next few weeks. I start work at 9am, and get home on average at 6:30pm. Even aside from wanting to have a life and not go to bed at 7pm it doesn’t work. I was taken aback and immediately in tears. My social worker asked for an urgent response, I gave her one.

She has since emailed back suggesting I move to direct payment rather than social services commissioned care ‘So you can find an agency and choose your call times directly’. Again my response was easy: absolutely not. I was sent down that road in 2016 initially, I can see why it works for the state, they want to wash their hands of you, give you the money and let you sort it out yourself – all the while dressing it up as giving you choice and independence to choose your own provider. Nice try.

So here I am again, frightened, stressed, and constantly distracted. Really good for MS. I haven’t told my parents yet, there is enough going on in my family at the moment, illness and old age requiring a lot of attention. I won’t move back to my parents because as soon as I do that then social services will tick my box off and I’ll be stuck there indefinitely. If no suitable calls can be found, then what? I’ll let social services tell my employer I can’t make it in shall I? Why does everything have to be such a battle? It’s exhausting. Am I going to need to involve my MP again?? No-one with health and energy has to go through this shit, why do I?!

FES shows that foot drop isn’t my only problem

The physiotherapist I saw in December at my three monthly fampridine review referred me to try FES. FES (functional electrical stimulation) is used a lot with MS patients or those who’ve suffered strokes, and applies electrical signals to stimulate the nerves in the leg, so that the foot muscles contract and lift. The logic is that although nerve signals don’t fire from my spine due to central nerve damage, the peroneal nerve along my leg works and can be triggered further down. I definitely suffer from foot drop, that is my toes sticking to the floor and blocking my foot from swinging forwards, and I compensated with weird swinging hip movements to kick my leg out sidewards, so FES prevents that.

The fact I was even referred to try it is really exciting, but I’m definitely at the less mobile end of those at the clinic. On the afternoon of my second visit to the hospital I was too fatigued to even stand up at the frame, and I think the therapist was wondering how I got there…

It is a massive hassle to set up, sticking the electrodes to your legs (I’m still drawing their positions onto my skin as half a centimetre move kicks my foot in a different direction). I’ve bought a bumbag to hold the power box in (luckily they’re in fashion and asos have loads), and the foot sensors are stuck in one pair of my traniers, which don’t go with every outfit. All the wiring fits fine under loose bottoms but I don’t think skinny jeans would be an option (I’m sure it could all be bluetooth…). Each electrical signal for each foot lift is a tangible buzz to my legs which is a weird feeling. But of course, if I was walking again, even with crutches or a frame, it’d be worth it, and make moving around friends’ homes or going to any bar/hotel with steps or non disabled loos so much less complicated.

It’s been three weeks, and it’s really hard. I arranged to cut my hours at work to 2.5 days a week during two months to allow myself time to trial it. After work I’m often too fatigued to eat, let alone try walking. I thought two months would be plenty of time; maybe I’m impatient or maybe it’s not going to happen, but I’m only managing a few short walks around the house about three times a week. It’s exhausting. I’ve been so tired which then knocks on to the next day at work where, come 3pm, I can barely type and have had a fall in the office whilst transferring chairs (everyone else was more alarmed than me). It’s still early days and hopefully I’ll get past this but it’s pretty counter intuitive. Walking is easier for sure, but it’s not easy, there are other issues like stiffness in my hips and weakness in my core that hinder me beyond the foot drop.

The FES will not fix the damage in my spine or allow me to walk freely again, but being upright even a little strengthens and stretches you. After I walk my feet feel so much looser, they’re less puffy, and the most dramatic change is the reduction in clonus (legs shaking).

I’m going back for my review in two weeks – each power box has a memory, like a fitbit or phone, so my physio will be able to see my use and whether it merits continuing the treatment. Even if it is, I then need to make a call on whether the positives outweight the negatives here. The only constant of MS is difficulty. The FES is no smooth fix but for now I’m giving it a go.

 

The new year

Another year, time flies, can’t believe it, etc etc. Always true, but I have a particular problem trying to bookmark my health. MS is such a gradually shifting illness that, when I sit down in front of my nurses and doctors and they ask me if anything’s changed, it’s true that in the past few weeks or months, nothing dramatic has. But when I remember specific past events, I know that my disability has massively progressed. So I’m really trying to evaluate the past year…My right arm and fatigue have definitely worsened. I don’t know when exactly, but I know that they are now daily obstacles which limit my ability to function, and I don’t think this time last year I would have rated them so high a problem.

• I often have trouble extending my right arm and fingers now, my hand writing is very limited, and I’m worryingly relient on my left hand. This isn’t a new symptom, a sudden relapse in 2011 damaged my right hand, temporarily halting its dexterity (in the middle of my accountancy exams, and everyone else thought they were stressed…). It recovered, but has been weaker since, and has worsened.
• The fatigue is a new unwelcome addition. I think I’d always understood it as tiredness before. And to be honest thought there was an element of weak willed laziness wrapped up in it, although obviously I never said that out loud. 2017 gave me my first real smack of it in a solid block. I now also recogise on a daily level the physical impact of fatigue. Come the end of a day at work I have less strength than a bowl of jelly, it’s all I can do to close my eyes in the cab commute home and hope that a power nap will recharge me enough so that I can get into my flat at the other end.

They’re the negatives. A sad part of MS is that things just staying the same is a positive, but even beyond that I think there are some highlights:

• I actually think my legs have strengthened. The introduction of fampridine and more regular/intensive physio have gone hand in hand – each enabled the other. I can walk (i.e. wobble along on a zimmerframe) as well if not better than I could 12 months ago, transferring is easier, and I’ve noticed my thighs (while still a source of disappointment, a lingering vanity) have actually toned up a bit.
• My bladder control has been pretty good compared to a few years ago, I’ve cut my bladder urgency meds to a half dose, and I’m racking my brain but I don’t think I’ve had a single UTI. My 2015 self wouldn’t have thought it possible.

Becoming more used to, and so confident, being disabled has led to more proactivity, and ultimately to my involvement with the MS Society and MS Trust – speaking openly about my least favourite part of my life to a filled room was my biggest achievement of 2017.

And in non-MS life I’m still living independently in my flat (/with carers twice a day), still working, still swimming, seeing lots of friends and family. Most of the bad parts have been out of my control. This is the first time in about 5 years where there have been no significant changes. I’ll probably complain about boredom another year, but for now, I’m pretty happy with that.

When plans change

When I woke this morning to snow covered empty roads, I initially ran through my day plans and reassessed which were possible. Swimming and brunch with a friend? No. Even getting from my parents house, where I’d spent the night, to the pool in my hometown would be hard, let alone my friend and I then navigating the pavements. I know I was disproportionately upset by that, but I’m too tired to swim on work days so my weekend swim is really important to me as the little exercise I can do.

The knock on effects were bigger though: snowed in, could I get back to my flat tonight? And then how to get to work tomorrow? ‘Wait and see’ doesn’t exist for me anymore. I have to organise my carer visits, my taxis to work, even my work laptop is at my flat should I need to work from home. My life is constantly scheduled with military precision. I know this, I’ve commented on it before, and keeping on top of all the moving parts has become an ingrained feature of my daily admin. But it’s only now, when plans unexpectedly fail, that I realise how much this way of living has infiltrated my mind too.

I was irritated, short tempered, and actually finding myself getting upset at my parents, like a toddler who expects grown ups to control the skies. I really only relaxed once all weather forecasts had been checked, a new plan made, and I’d contacted my carer, taxi company, and checked work emails. There’s so much scaffolding holding my life together, undoing it isn’t a quick job. Then followed some harsh self judgement.

I’ve long accepted that disability has robbed me of freedom. The luxury of being able to wake up, get up, go out and do whatever I fancy is an old memory, a richness you only appreciate when it’s lost. The correlation in rigid thinking has crept up on me though, my physical health dragging down my mental health in new ways. I’m a little embarrassed by how stressed I became. The big question, which I don’t have an answer for, is what the heck to do about it. By definition, you can’t plan spontaneity. Maybe learn new things, go to new places – just keep my brain fresh. But still, this will inevitably be within allocated timescales on fixed days, and there’s no changing that.