It’s taken me a while and many attempts to write this post, I’m still carrying trauma from the experience. I know I’ve been very quiet since the birth of my daughter, which was hard in ways I didn’t expect – mentally and physically. However, other than a drop in my eyesight, my MS was stable and avoided a catastrophic acceleration or relapse that we all feared. So ultimately, under hushed breath and with fingers crossed it all went pretty well. What I didn’t know is how MS can affect your cough reflex and lung capacity… and that’s what’s changed.
At the end of May, I felt I had a cold. Hoisting and moving were difficult, and I was coughing. I tested negative for Covid, had some Lemsip and spent the day in bed – colds normally last three days with some home nursing. Two days later and my coughing was so severe I was struggling to catch my breath in between. It was a Sunday so I called 111 and found myself in a hospital bed that night with a low oxygen saturation. With my oxygen needs continuing to increase, I was moved into intensive care the next morning. The ITU doctor summarised it neatly: I have MS, I’m on an immunosuppressive drug, and anybody is weaker for up to a year after childbirth, so I needed more careful attention. I suppose my mindset was naïve, I felt okay with the oxygen mask and figured things would improve.
On entering intensive care, the consultant explained to me that although we weren’t there yet, intubation was an option if my breathing decreased further. A CPAP oxygen mask was put on me – these are incredibly tight masks which cover your whole face and pressurised oxygen is blown into you to try to reach your lungs. You can’t talk with one on, you can barely hear over the sound of the gas rushing in and out, it felt like it was breaking my nose with how tight it was (I had bruises after) and the air pumping in is so forceful it’s all you can do just to try and keep pace breathing in time – it almost feels like you’re going to choke on oxygen. An arterial line is inserted into your wrist, and although you are injected with local anaesthetic before they insert it, it took many attempts, with large bleeding holes left along my arm. Even once in the line is painful, and further still every time blood is drawn from it. My teeth were chattering so strongly with fever I thought they would chip. Sleeping with the mask on was near impossible, and it dries out your mouth and throat to such an extent that taking it off every few hours to try and sip some water felt futile. After two days of this I was exhausted, and the monitor attached to me was still beeping that my oxygen saturation was below 90. My pulse was at 160bpm. I begged the nurses to shave my head so my hair would stop being torn out by the straps of the mask (they didn’t, instead chopping blocks out each time with scissors). Whenever the mask was removed for me to try to eat or drink I felt like I was suffocating. Having initially recoiled at the mention of intubation, I couldn’t take any more and asked the doctors to just do it. As the coma inducing drug was injected and my eyes closed, all I remember feeling was relief.
I opened my eyes three days later – with the intubator still sat in my throat. The next 48 hours were amongst the most painful of my life. Once the intubator is pulled out the pain screams down your throat. You’re unable to speak following your vocal cords being squashed. There were new tubes into my neck and down my nose feeding me. Unable to swallow, my lips and mouth were dry and cracking. I still required a CPAP mask over the top of all of this to get enough oxygen. I couldn’t move or speak, I remember my mum trying to hold my hand and even that felt too painful. Once I was able to speak again, I remember telling my dad I felt terrorised; ‘Do you mean terrified?’, he asked. No, terrorised, every part of my body felt under attack. In the ward is a 24-hour clock with the date on it. This became my obsession; all I did was lie there and stare at this clock. I was alive in the most primitive sense.
It all feels like a hazy memory, making this post more difficult. I remember on my ninth day in ITU, I was finally able to sip a lukewarm half full cup of tea; it felt such a huge luxury. The tubes were removed and I was transferred to a respiratory ward for a further 12 days. The sudden drop in surveillance is frightening, it took a physio to insist I was connected to constant monitoring initially (luckily as my breathing then worsened again). I slept and slept for days. Eventually I managed to fight to be given a shower, feeling rotten after two weeks of bed washes – would you believe there is no appropriate shower chair in the hospital?!
I was discharged from hospital, with significantly weak breathing and weighing six stone. My hair was a hacked jigsaw with a dreadlock down the back; I had all my hair cut shortly after, my hairdresser asking how short he could cut it. You are discharged with a heavy pack of NHS literature detailing all the specialist care, rehab, and follow up you need. As with a lot of public services, the carefully designed approach has been cut over time. The discharge physio service was woeful: a different physio arriving at a random time every day for a week, to seemingly just ask me what I can and can’t do and about my condition.
Six months later and I’ve gained a stone and my breathing has improved but is still weaker. I struggle to cough or raise my voice. Two months after discharge I had shingles for the first time. I’ve been back into hospital with a RSV linked chest infection (the respiratory ward, now anything other than intensive care seems comfortable).
Worsening MS can affect the network of muscles that need to work together to sufficiently cough and clear your lungs. Mine have now evidently weakened, especially during an infection. So respiratory infections are a new part of ‘life with MS’ for me, and I will undoubtedly need hospital treatment in future. I accept I’m vulnerable to viruses and ‘colds’ in a way I wasn’t before (obviously now having a one year old germ catcher in nursery makes it especially hard). I’ve been told it can take a year to recover from intensive care, although you may recover to a lower baseline, and that intubation can cause permanent lung damage. I never want to return to intensive care though, it is ‘hospital’ like no other. I can aim for that.
Source: thinkindecimals.wordpress.com