I am in total amazement that my disfunctional body grew a baby. With so many uncertainties from the conception, and my body already having lost so much function, it truly feels like the womb and nervous system operate entirely separately.
The caesarean went well (the hardest part being holding my body in position for the epidural). I tentatively waited for an MS flare post birth, but the few days of blurred vision seemed to be all, with my Tysabri infusion following two weeks later. Doctors are shrugging their shoulders at months of bowel disturbances since – which usually means it’s MS. But on the whole, we were expecting worse.
The last three months with a newborn have been hard, but I don’t think it’s easy for any new mum, and my six months of planning with social services for maternity care has come good.
Plenty of challenges ahead for sure, but a rare appreciation of what my body has done.
Did I say I was pregnant?! After what feels like years of research the last nine months have gone fast, pregnancy moves at a different rate to MS (and thankfully the NHS is forced to follow). Particularly this last trimester.
When I was originally looking up advice about MS and pregnancy, desperate to find information, all that was available was from the relatively undisabled. It felt like a wheelchair user with advanced MS was really getting pregnant into the unknown, and midwives, doctors, and social workers seemed equally stumped (was I the first person ever?!). Actually, compared to MS, it’s been okay – the fact that there is a finite time limit to any symptom is such a joy, imagine if you had that certainty with MS?!. My takeaway from it so far:
It’s a very different perspective of the NHS. I can see why healthy people who just might have broken the odd bone and then have some babies think it’s fine. Appointments follow quickly, different professionals are joined up, and all within nine months. I see my neurologist every 14 months. I think it’s only because I’ve had MS so long he even knows who I am. The obstetrician consultant tried to refer me to a urologist (catheter problems) but we’ve heard nothing back… I imagine the child will be in school before that appointment arrives.
I’m scheduled for a caesarean, the discussions around this were pretty brief. Leg spasticity, core weakness, and fatigue all made a natural labour seem too risky. I’m planned to have both spinal anaesthetic and epidural, which does carry risks with MS – where damaged nerves can be susceptible to more permanent damage. That’s the scary part, but as the anaesthetist said, you can’t just have a caesarean with paracetamol so we’ve got to choose something despite the risks.
My suprapubic catheter has given me most problems during pregnancy. From around month five it was getting blocked every week, I tried changing pregnancy vitamins and filtering water but it didn’t seem to help, so I can only assume it was blocking with some pregnancy byproduct. My obstetrician was first to admit she didn’t know why, and referred me to a urologist… Still waiting for that appointment. So having gone from 12 weekly catheter changes I’m now lucky if I manage four weeks (and have also introduced saline flushes to try and unblock it weekly). In the past final month I started getting a lot of blood in my urine, running down the catheter so it looked like a transfusion bag. After calling midwives, district nurses and 111 I was sent to A&E where I waited for seven hours to be dismissed with antibiotics for a UTI, still without seeing a urologist (they’ve almost become mythical to me). The bleeding is still sporadic, and doesn’t look like bleeding from a UTI, so I’m guessing it’s as things are changing shape and baby is moving it is causing some kind of trauma along the bladder or scar tissue. Total self-diagnosis though. The area around my catheter has also been quite painful as I’ve grown, which we think is the scar tissue stretching. It comes in waves, but not something NCT will teach you about.
I was conscious early on that my social care provision would need to change. Firstly to help me recover post caesarean and on maternity leave, and secondly to help me care for the baby – a very hands on job which I can’t do alone. I called them around month three to get the ball rolling and initially it was made impossible to even get through the referral point, I was told ‘We don’t do hypothetical assessments’ and to refer myself two weeks before birth. Anyone who’s ever dealt with social services knows how laughable that is, nothing is done within two weeks. I had to persevere and fight but eventually was in contact with a social worker who’s been very supportive and given me funding for three months with a nanny which was a massive relief and great result, Obviously social services take months to confirm this and then assume once they approve the payment the job is done… So the nanny recruitment has been somewhat rushed. But to me the most important thing is just that someone is here to physically help with the baby.
I stopped taking my muscle relaxants (baclofen and tizanidine) when I found out I was pregnant. One week later and I was so much less drowsy with no noticeable change in my limbs – why have I been taking these for ten years!!? A month or so passed and my legs became very unwieldy, the spasms ever stronger. My right arm is now constantly cramped, and the leg cramps common in pregnancy anyway were amplified. Good to know the drugs helped after all.
Daily blood thinning injections have been managing my risk of blood clots – higher anyway in pregnancy, but especially if you’re less mobile. It’s annoying sure, but compared to the old MS beta interferon injections, they’re tiny.
My bowels have never been particularly regular, but pregnancy constipation is another level.
The baby has been consistently small, but the recent growth scans show growth has slowed further still. Apparently it’s common for mothers with any chronic condition to carry smaller babies, be it asthma or diabetes. But despite my midwife’s reassurances I can’t help worrying that being in a wheelchair is somehow squashing the baby’s growth.
So overall pregnancy has been fine, with the worst parts those ultimately down to MS. It’s been decided that because of the slow growth I will be going in for a caesarean next week (week 37), with my next Tysabri infusion 20 days later… Wish us luck!!!
After 10 years, Tysabri is evolving to become simpler to administer. One of the strongest MS drugs, and up until a few years ago, the only ‘highly effective’ treatment available, has involved an afternoon spent in hospital every four weeks. Only dispensed at regional centres, it’s generally not even your local hospital – For me an hour away in North London, with all the congestion charges and parking problems included.
So the announcement that Biogen were making Tysabri available in an injectable format wasn’t unwelcome. Currently an hour-long IV infusion ( with another hour of saline after), this is two subcutaneous injections a few minutes apart, in your stomach, thighs, or arms. One step closer to the idyll of popping to your local GP for 10 minutes. It’s only available if you’ve been on the drug for over 12 months, The logic that by then drug levels will have built up in your body to offset any slower or lower absorption from the drug not being fed directly into your bloodstream.
We were told about the change at the Royal free Hospital for several months before it happened. We knew that our dedicated infusion nurse (funded by Biogen) would be leaving once the change was made – the logic that the injections are quicker and simpler to administer so require less healthcare supervision.
So when the date finally arrived I was ready. I’m not squeamish about needles, anyone receiving the MS therapies 15 years ago would have been used to injecting themselves at least weekly, and an IV canular is hardly pleasant. But this drug BURNS. I mean really stings as it enters your body, the needle is the nice part. At the second injection, my left arm was spasming so violently that the nurse had to keep stopping, prolonging the process. The next day and I was experiencing stinging nerve pain along that same arm, one of my first symptoms pre diagnosis, where you’re rendered incapable of doing anything else. My stomach site formed a bruise the size of a £5 bank note lasting weeks.
I insisted I moved back to the IV infusion. Ultimately, once we’ve travelled an hour and parked the car, an extra hour sat in a hospital chair makes no huge difference, and certainly isn’t worth the adverse effects I had. Additionally, those of us who are JC positive are receiving the drug six weekly, rather than four weekly to lower PML risk, which is already less onerous. Everyone else seems to have transitioned without problem though, my MS nurse guesses it’s because I’m slim with less subcutaneous fat… Which you’d have thought was obvious to them from the outset. I’m resigned that things will rarely go smoothly for me, and know that if my body can react difficultly, it will. But until we get anywhere near Tysabri being administered locally, I’ll give the injections a miss.
A fairly impulsive holiday to Marrakesh this spring, when I was just craving some heat and sun (and easyJet obviously sensed the vibe and launched sales). I didn’t expect an old African city to be super accessible, but it had got to the point where I thought sitting in a street at 30° was preferable to the UK so went for it.
the Riad
The hardest part was always going to be finding accommodation without paying a fortune for a modern hotel, but I had a stroke of luck on Google and found a city centre guesthouse ‘Riad’ offering an accessible room… Gold dust. Riad Abaca Badra have a ground floor bedroom with a walk in shower, which the owner put a plastic chair in for me. Some of the angles in the entrance were quite tight, but the owner was so willing and helpful that I really couldn’t have done better on my budget.
I say there are three big barriers for wheelchair users in the city’s old town:
High kerbs – crossing the road or navigating between disappearing pavements gets tricky with kerbs double the size I’m used to, So don’t try and get anywhere in a rush and anticipate needing help!
Cobbled streets – as you get nearer the historic parts and the Souk don’t expect a smooth ride. Somewhere on the streets of the city are a few screws from my wheelchair which got wobbled out and I had to book some emergency repairs on return.
Stairs – restaurants and cafe’s tend to be fairly narrow but with two or three stories and a rooftop terrace, and there aren’t lifts. There are always a few ground floor tables but inevitably you are missing out on a big part of the city experience. Wonderfully we did find a restaurant Kui-Zin who lifted me up the stairs, but with fairly spindly steps I was holding my breath…
That said, it was wonderful and I’d go back. I’ve rarely felt so welcomed in a new place, If people saw us struggling on the street or trying to get into a doorway, they would come to help with nothing but smiles. Tourist attractions like Le Jardin Secret, the YSL gardens, and the Saadian tombs are accessible and offer a discounted ticket price. The new town holds fewer attractions and less charm, but some smooth pavements for a change of scene.
It often feels like as a disabled traveller you’re restricted to more modern/Western destinations, while our healthy peers can go scrambling around more exotic, less developed parts of the world. What I loved about Marrakesh was the completely different culture, whilst never worrying that I’d be stuck or stranded in my wheelchair. Four hours in a cafe on the main square, people watching, sipping mint tea? Any time.
It must be that enough time had passed since I was last battling social services, that I found the confidence to think moving would be okay… After all, it’s a bungalow, it’s in the same town, just a few small alterations needed.
Unfortunately, though, I think unless you’re in an accessible council house and unemployed, social services can’t help you. The options available to councils and occupational therapists has been cut and cut through progressive losses in funding, and they’ve now got very limited options.
A ramp and shower. That’s all I need. The bungalow so far has a bath fitted, and there’s a step and porch to get through in the entrance. Rip out the bath I thought. Long term I’d want to redo the bathroom to a wet room, but having just spent all my money on the move, for now, I just need it to be functional.
It’s a very boring and long story – but in summary: I don’t qualify for the disability grant to fit a £9k wet room due to my part time employment income, and a £2k shower tray option would not be completely step free, therefore an OT won’t sign off on it for my carers to use. Riddle me that. So me being unable to wash is a better, safer option for everybody.
Apparently OTs used to have discretionary budget. No longer. They’re proposing adding the wet room cost as a charge on your house, but unless you’re near death and sure you’ll end in that home, with the charge taken from the estate you leave, it’s more debt. So I remain trapped and unwashed.
As for ramps, the council have now sent me some temporary ones, but I still need someone else to manually place them and move them around for me to use. A permanent concrete one is again, inexplicably, not an option.
So boring. So frustrating. So upsetting. There’s no judgement or flexibility; the rules are the rules, and if you don’t fit them, just be quiet and sit in your wheelchair.
It can’t be just me who gets thoroughly frustrated at the health and safety restrictions we always face in the UK… Far from helping me in any way, it just seems to limit choice, increase cost, and further separate us from the healthy population.
Which is part of the reason I love going abroad, it’s always a bloody relief. It’s not all countries of course, the USA is even worse, but this summer holiday to Cyprus was no exception (yes, I’m slow to post this).
Firstly, getting off the plane. Not only was the disabled assistance there ready, but the assistant staff are able to transfer me into the aisle chair, make a judgement that I am sitting well, and wheel me off. I absolutely detest the equivalent UK process where three different belts are strapped around you as if you’re being sectioned and rolled away in a high security unit. In the airside lift, which moves vertically up and down at about 1 mph, you are able to put your wheelchair brakes on and stay against the wall, unlike back here where staff have to spend 10 minutes strapping my chair to the floor (how’s that safer in an emergency?!).
So, having seen para sailing trips up and down the coast from our hotel, I was desperate to see if there was a way I could do it. And guess what, that was! It was so much fun, and a box ticked from my life experiences list. The hazardous part was getting in and out of the boat and strapped to a parachute, that relied on an amazing crew not being scared to lift me about. Once you’re in the air it is actually amazingly serene, very different to what I expected. Now if ever I see a boat with a parachute soaring behind it, I won’t wonder enviously, but instead remember the experience with a smile. Memories of doing things take on all new significance in disabled life.
Were I somewhere like the UK, I imagine I would have had to research different operators in advance, call ahead, wait for some manager or specialist to call me back, tell me it either wasn’t possible, or I would need to visit ahead of time for an assessment, all costing triple the healthy price. It’s enough to suck the fun out of anything. I’m not naïve to the fact it could have gone badly; the guy carrying me into the boat could have fallen off the jetty, the strap supporting my back could have broken. I’m hugely grateful to the crew for taking that chance, but for me that’s life; I’ve fallen over in my flat or spilt boiling tea on me enough times to know that. There are risks, let me choose to take them.
Remember lockdown number one in 2020, when all physio stopped, swimming pools closed? Well, at that time I lost movement in my right arm. My right hand has had poor dexterity since a relapse in 2010 (one of my last classic ‘relapses’). but I noticed then that I suddenly couldn’t lift my right arm up, for example to tie my hair, it just wouldn’t move above shoulder height.
As anyone with a health condition knows, the support available during that first lockdown was non existent. I hoped that when exercise resumed the strength would too, but by the time I had my annual consultation with my neurologist, I knew that it hadn’t. He referred me for NHS physiotherapy… then in the months of wait that followed, I spent hundreds of pounds privately to try and regain movement. The physio helped reduce the pain now in my shoulder, often keeping me up at nights, and my GP injected a steroid into my ‘frozen shoulder’ for good measure, but by the time I saw the neuro-physio in 2021, I was fairly resigned that this was an MS development.
Still, we both played along and went through the exercises I had already been doing for months until he reached the same conclusion and referred me to see a spasticity specialist to try Botox, a slightly left field approach but I was willing to try anything. By spring 2022 when I finally saw the specialist, I was sadly used to my right arm being void of any function. Despite having had MS for nearly 20 years though, I’d never had Botox treatment before, so who knows?! I do wonder at the human condition to still feel that bit of hope even when your brain tells you better.
He had a prod around my arm and shoulder and found a lot of spasticity within my right bicep particularly, pointed at a suitcase in the corner of the room and said he could either inject me in another appointment in a month, or there and then. Having waited two years already we went for it. It’s a particularly unpleasant set of injections which have to go through various muscles to reach the desired spot, and he warned me it was a balancing act between easing cramp and maintaining function… unlikely to deliver me the full range.
The thing about Botox is, it deadens your muscle and forces it into relaxation, hence its use on frown lines. So I did notice that I was able to hold my arm straighter, even lying down in bed, and my right shoulder blade wasn’t as raised as it usually is. But beyond that extra straightness, I didn’t regain any movement – if anything the grip in my right hand has got weaker (which the specialist denies is linked). The doctor and I looked at each other in my follow up appointment and all I could say was ‘I knew it was MS damage all along’. He looked sympathetic and said that we were still right to try this course of treatment in case. So there we are.
I still wonder if the initial 2020 damage was linked to the lockdown of services, or a coincidence. I wonder whether, had I been able to see medical professionals sooner, the outcome would be different. Or whether ultimately, this was just an inescapable MS trajectory. Either way I don’t think I’ll have Botox again, at least not for MS.
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 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!
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…
think in decimals 