Adjusting into 2022

2022… what?! I know I’m not alone in feeling like the last two years don’t count. And I realise it’s already the end of February so hardly counts as the New Year any more. The last two years made it easy to fall into the isolation lifestyle where the days and weeks just slip by, but with all UK restrictions ending last week, as much as I will continue being Covid careful, it’s time to shake out of it.

The impact of the last two years on my health has been clear – I have lost mobility in my right arm. Despite lengthy work with a physio (first private, then NHS), I never recovered from the crash during the first 2020 lockdown, when my regular physio and swimming sessions were stopped. I have since been referred to a specialist team to look at spasticity options like Botox, but the referral has been six months and counting, so I’m not expecting miracles.

It’s safe to say I felt no desire to return to the swimming pools when they reopened in the middle of last year, after what turned out to be over a year’s gap; it was definitely a case of mind over matter, and the first few months were ducking difficult. I needed someone else in the water with me, and having gone from swimming 20 lengths weekly, I was struggling to do four. My body was actually barely able to get through the water, it was scary (with a few near drowning experiences), and truthfully I didn’t think I’d be able to swim again… just another lost activity, as we get used to with MS. I battled on, and after a few months entered the pool on my own. Since then I’ve been doggedly going weekly with a carer.

It’s still far from easy (I’m averaging 12 lengths an hour, and still needing to swim along the edge of the pool for mid-length breaks), but I saw how quickly my body deteriorates when I stopped. To be honest I’m just proud I managed to salvage an activity on the brink of going into the ‘Things I used to be able to do’ bin. I doubt I’ll get back to my pre-covid ability given my arm function now, but if I maintain my new level, I’ll take it as a positive. I’ve bought myself a new swimming costume, nothing but good intentions.

I found returning to the office far more exhausting than I ever remembered it being, but new flexible ways of working mean I’m currently doing it once a week which is manageable. This winter is certainly passing more quickly than last, when the UK was stuck in lockdown, and it’s such a relief to have holidays to look forward to (fingers crossed these go ahead, subject to covid/war). I’ve learnt that having holidays on the horizon is almost as important as the trips themselves to me. Apparently I’ve reached the age where my spring bulbs flowering is a significant event (having watched them slowly peek out during the cold winter days). My crocuses are here: spring is coming.

The baby dilemma… add in MS & disability

The mid thirties baby bombardment is here, whether it’s the steady influx of friends/friends of friends/former school peers reproducing, or the targeted ads for maternity clothes and follow-on milk on my screens. I get that it feels like a huge decision for most people, but the extra complications of severe MS and disability are hard to process.

As a younger, healthier girl in my early twenties I kind of assumed that I would have children. After all, having grown up with parents and school holidays, that was my template. As a good friend explained to me, it’s harder to imagine a childless life when that’s not the environment we’ve known. But when I found myself single and needing to use a wheelchair in my late twenties, I reshaped my vision. It took a huge amount of grief for the whole way I’d planned to live, any ideas of family were just a part of that. With some years, therapy, and a course of antidepressants, I learned to live with the grief. But the current baby wave is turning out to be a separate brainteaser.

When I started taking Tysabri nine years ago, the guidance was clear: you should not conceive whilst taking MS drugs. The significant gap in MS treatment during trying for a baby and pregnancy was one of the main factors causing women to have such a dip in health. However I spoke with my former MS nurse a few weeks ago, and the guidance has now changed; subject to the prescribing neurologist, it is possible to receive Tysabri into pregnancy (I must have missed the announcement accompanying this pretty major change in advice). To keep things complicated though, JC positive ‘high risk’ patients like myself are now being moved onto Ocrevus. A year ago, when I thought I had no drug options, I would have jumped at the chance. But, you cannot conceive whilst on Ocrevus. I would love not to be tied to my hospital Tysabri infusions every four weeks, but the decision to move treatments is now much more loaded and tied to ‘the life decision’ of whether to have children.

There’s unfortunately no exact template for how my MS and life will be with or without children. My partner is also undecided, which I understand given the potential health consequences for me, although he would need to take on most of the physical aspects of childcare. I would love to have a conversation with my sixty year old self to advise me. I know the reality is there is no ‘right’ answer, but would having children in my severely disabled condition be impossibly hard for me, my partner, and the children themselves?! Equally, the only certainty I have is that my MS will continue to progress and deteriorate, so is it better to crack on? In a decade’s time would I regret being childless? I would never want a child to become my carer and look after me, but having a family unit does make my increasingly disabled future look less scary. And what about pregnancy when you’re as physically limited as I am? It would certainly be classed as high risk, but as that is my constant box, it loses effect; but does pregnancy in a disabled body increase the risk of other physical problems? Would a cesarean even be possible with my suprapubic catheter? Would I be able to receive increased social care to help? Most MS charities have guidance on pregnancy, but MS is so wide-ranging in symptoms and severity that it’s impossible to find specific answers. There is also the reality that my child would have a higher risk of having MS, about 1 in 50, and although MS treatments are constantly developing, I would hate to pass the illness on. And that’s not even thinking about how the fatigue of parenthood would affect my own health… is it possible to overthink such a decision?!

Friends who have gone through parenthood give the puzzling advice that it is both the hardest and best thing they’ve done, both extreme yet entirely subjective labels. Living with MS is hard, organising social care is hard, and I didn’t choose any of that. If I had a free choice I would probably be more wary of the limits children bring – no spontaneous trips or working around the world, but my life is already pretty restricted by disability. My neurologist gave me a few answers, but I could ponder the issue in circles for hours (and have done) and be left with a lot of unknowns. And of course, this could all prove irrelevant if my next JC virus count has risen significantly and I need to move treatments; as ever, all choices subject to MS.

This piece was published by the MS Trust here. I was largely interested in sharing it to hear others experiences/insights/wisdom!

Social care (funding) reform

This week saw the UK government announce its long awaited plans to ‘fix social care’, in the form of a 1.25% increase in National Insurance, and pledged an £86,000 lifetime cap on care costs. No mention of how social care will actually be reformed, or urgent issues like staff shortages or inconsistent care quality addressed. Oh, and social care won’t be seeing any of the money for at least three years, until the NHS stops needing it (which seems unlikely). And it’s only a tax on employment, not income; so private landlords for instance won’t have to pay a penny extra. At best, it’s a change to the funding structure.

Media portrayals of social care are often dominated by elderly users, when in fact over a third of users are working age. To help demonstrate that I was interviewed for the BBC, and shown in the reform coverage on the 6 and 10 O’clock News on Tuesday. Inevitably, the 30 seconds which made the final edit were where I was most emotional, and as much as I hate being the cliché of the crying disabled girl, social care often has that effect on me.

More of what I said was featured on the BBC News reel and a longer video on the news app. I just hope that’s not it, that real reform is to come – imagine there being enough carers, let alone a National Care Service…

CSA social care campaign launch

The Care and Support Alliance represent 75 UK charities who are all, in different ways, linked to and reliant on social care.

The UK prime minister Boris Johnson had consistently promised to ‘fix’ social care… but with the pandemic and Brexit it seems to have slipped from his priorities. It’s a complicated, expensive problem with a human cost. I get that it’s not easy, but we need reform, we need funding, still.

I spent an afternoon filming with the alliance and MS Society to share some of my experience as a care user. It’s been combined with David and Rasila’s stories to launch the campaign #KeepYourPromiseBoris.

Please please fill in your details to email your MP at https://keepyourpromiseboris.com/ to keep social care on the agenda.

Lockdown’s lifting, and I feel firmly stuck

It’s true that disability is relative to society. Whilst my MS has been really difficult over the last year, the flurry around restrictions easing and the plans people are making are what makes me feel most disabled. ‘Normal’ was easier to ignore when everyone was stuck at home, yes I wished I could go for long walks to escape the house but actually, I know everyone was fed up, and the communal ennui was far preferable to the isolated and frustrating limitations enforced on me by MS.

As people start planning their summer I’m left with familiar challenges. Transport for a start, having not left my home in a year, I’ve lost contact with my carefully managed network of local taxi drivers who either had wheelchair adapted taxis or could help me transfer in and out of their cars. I hope they’re still working; as disabled people know, there isn’t a huge market open to us and it’s hard work just to maintain a minimum.

I know I desperately need to return swimming, the loss of function in my right arm has proved that. I’ve spent months working on it with a physio to bring down the inflammation and pain, but it’s been a real eye-opener to how vital my weekly swim was for me, and despite all the online and home workouts everyone else found, it’s been very hard for those in wheelchairs to find alternative ways to exercise. But here’s the biggie, will my body even be able to swim when I return?! It’s a reasonable question with MS. I’ll certainly need to recruit family and friends to be with me in the water when I attempt it. And it’s going to be such hard work to try to build back up. So when people ask me in a casual way if I’m looking forward to the pool, I nod and smile. The real answer is not really, I absolutely need to, but it’s going to be ducking hard.

It makes sense that so many of my peers have chosen this year to have babies, I’ve literally learnt of another four pregnancies this weekend. No one is missing out on partying during pregnancy, and with everyone working from home both new parents are around, and I’m 33, it’s that stage of life. But for me it painfully highlights how different my life and the choices I have are. Of course it’s biologically possible with MS (although you’d need to stop a lot of medication), but let’s be honest, disability and illness are so hard to manage already, It’s just not a happy decision. Seeing my friends enter this massive new stage in life while I painstakingly try to maintain my limited disabled version is hard. It’s grief. Both of what MS has done to my life, and the grief of friendships changing. It can feel like another loss.

The overarching anxiety is how well my body can cope with life expanding again. Deterioration in MS is so relentless and unpredictable that you don’t know which part of you will be affected next. It’s been easier with the same small routine every day to ignore what I can’t do. But I’m still exhausted come 8pm – how are my fatigue levels going to cope with going out in noisy environments? Large groups of people? A whole day in the office?! The reality is I might not be able to, and being stuck home without the rest of society sharing it is a daunting prospect.

Fourth care agency lucky

I did the impossible and changed care agency without going to national media. It’s been enlightening, although still not straightforward, but I’m really hoping this agency works out for longer than a year so I can just Stop. Having. To. Deal.

As many of you will know from my previous appearances in the Guardian, Daily Mail, and Victoria Derbyshire show, my experience of finding any care agency with availability for my calls, let alone one I liked, has been torturous, so it’s a sign of how difficult relations had become with my last agency that I dared rock the boat.

I was finally paired with them in November 2019, after months of uncertainty and my social worker suggesting moving to a care home, which led to coverage on the BBC (which I’m alas sure is what enabled the progress). Only a few months in though and a new care manager joined. She apparently had a life’s experience in social care, yet felt like a dragon; by the end of last year I would be close to tears if I saw her name flash up on my phone. It started with a new instruction that carers couldn’t take my tablets out of their packets for me. Even with a medicine chart. Even though I’m capable of knowing which tablets I need, but struggle physically taking them out of the packet. So preparing my tablets into daily boxes became a job for my family. Then there were my stretches. Twice a day in bed my carers would help me stretch and move my legs to ease the spasticity. I have an electric profiling bed so that carers are not straining their backs, and it then makes sitting up and hoisting a hundred times easier. But, out of the blue, the Dragon called me to say that carers could not continue “We can’t give exercises, otherwise we’d all be physios wouldn’t we?” WHAT? I tried reasoning with her, that the movement is actually no different to when carers put my shoes on, but it was no use, her word was final, and all my carers were sent an email: no touching my legs. Over the course of the year she raised similar problems over my standing hoist (calling an OT out several times to assess for a ceiling hoist, which I repeatedly resisted), my shower chair (despite never having fallen off it, I now needed a seatbelt and it was no longer safe for carers to shower me, all barked to me over the phone at 7am one morning), call times (anytime between 7 and 9.30 in the morning, a surprise every day), catheter care (I apparently needed to call a district nurse to change the valve every week… another job which went to my mum) and logging in (carers now needed to use my mobile phone to log in and out of every call).

In the end, the carers actually did very little. My boyfriend was completing all transfers for me, my parents were preparing my tablets, and all that my carers would do is assist me dress. If I asked them to do anything useful like empty the washing machine, they refused on the grounds it wasn’t in my care plan, and so rarely completed their contracted call time. I felt harassed, fearful, and furious at any contact with the Dragon, throwing out new restrictions despite never actually attending my calls, and there’s nothing worse than feeling powerless and under the control of someone you think is incompetent. I called a few other agencies who confirmed they had no availability, so put my head down and carried on, that’s the MS mantra isn’t it?!

The change finally came at the end of last year. My OT had again been called, and my two carers, the Dragon, OT, and my mum (who I’d called for support) huddled in my bedroom wearing masks to watch me get hoisted out of bed. My OT watched, said it looked fine, and what was the issue? Seeing the Dragon backtrack from her usual aggressive righteousness was sublime (I learnt that she later sent a long email to all carers picking up on one comment the OT had made about my shower). Once they had left, my OT confirmed that she would support me moving to a different care agency if I could find one, and would email the relevant people. Thank goodness for people like her.

So, in a more organised way, we called every care agency in North Hertfordshire, and ended up with two options. I met with one manager who instantly seemed caring, proactive, and flexible. Catheters, tablets, stretches, even changing light bulbs, were not a problem. I signed up with them straightaway; their books were full soon after, the timing is precarious. Social services then negotiated the notice period with my old agency down from a ridiculous three to one month period. The funding was of course a debacle, with social services unable to pay the new agency directly, and again pushing me down a direct payment route (as if I’m not already submerged in disabled admin) but after a few months and thousands owed to the agency it has been cleared…

The difference in care is life changing, and it’s such a relief to be free of the anxiety that came with my old agency, but I so resent what a patchwork of pot luck social care is. If you went to your region’s hospital, of course some nurses would be better than others, but you wouldn’t expect a different process and treatment from one ward to another; yet with social care each agency is its own entity, and moving between them, especially when you need help getting out of bed and have work or social commitments, is all but easy. I certainly don’t want to have to do it again for a while.

Christmas… already

Where has this year gone?! The days, weeks, and months have all blurred into one, and now here we are at the end of the year and I feel like I’ve been really busy without really doing anything.

In terms of my year in MS, it’s been hard to know what is disease progression, and what is caused by inactivity and the subsequent muscle loss. In spring, after four months without my weekly swim, my right shoulder became completely locked and increasingly painful. My right arm, which was already my weaker side, lost all mobility, and I was left wondering how much was MS damage vs muscular. I spent the rest of the year pursuing both avenues, receiving steroid injections into it, speaking with my neuro, and weekly private physio for the last two months. The pain has finally gone, and all I can do is hope that I’ll regain some movement to finally see what my nerves are capable of once the muscle is strengthened. All the professionals have been fairly nonplussed by it and put it down to lack of swimming in spring, triggering a cycle of rapid muscle loss and inflammation. It all started after just a few months, but will take me many more to try and improve, so tiresome.

I’ve attempted going swimming a few times since the pools have reopened and it’s been thoroughly depressing. All I can do is feel grudgingly proud of myself for persevering, but to say I’m ‘swimming’ is generous when just trying to get any movement/not drown is challenge enough.

Without wanting to be all doom and gloom though, I haven’t got seriously ill or spent a night in hospital this year, I had my flat redecorated, read Virginia Woolf, and for the first year my orchid plants have profusely flowered. It’s something.

So now it is somehow Christmas… I intend to eat lots of cheese and read Stendhal (if not this year, then when?!). I was invited to give a short reading at the MS Society’s Christmas carol concert. In normal years, this would be a festive evening at a church in London. Instead I submitted an iPhone recording from my flat. It should still be an entertaining show though, tomorrow evening Tuesday 15th, tickets are £25 with proceeds going to the Stop MS appeal which funds MS research. Details are here: Virtual Christmas concert. Merry Christmas, see you there!

Life with a catheter

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.

I’ve written about the experience from catheter decision, surgery, and management, in a blog for the MS Society. (https://www.mssociety.org.uk/care-and-support/online-community/community-blog/life-permanent-catheter)

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.

Return of disabled admin

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?!

The treatment dead end

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.

tunnelAll 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.