Adjusting

adjust
verb UK /(MAKE CHANGES): to change something slightly, especially to make it more correct, effective, or suitable: e.g.”If the chair is too high you can adjust it to suit you.”

I’ve been practicing the art of adjustment lately as part of my ongoing efforts to adapt to the ‘new normal’ I’m presented with. I’m trying to adjust to the fact that I’m doing ‘alright for Liv’ rather than actually alright. That doesn’t mean I’m actually ‘okay,’ especially when thinking about where I want to be and how I want to feel. It means to get through each day, I’m having to make some pretty serious adjustments. It also doesn’t mean I’m really not okay which I guess in itself is an adjustment because if ‘old me’ were to describe the way I feel at the moment, they’d describe me as being ‘pretty poorly’ but now I’ve adjusted my definition of what ‘pretty poorly’ means to me and I think it’s something that involves being hospitalised and completely immobile.

Here are some of my current everyday adjustments:

  • having really slow starts, this is because I’m finding I can only cope with activity for half of the day e.g. during the morning or afternoon and definitely not both
  • not promising I’ll be there or committing to plans, this is something I absolutely hate and means I miss out on seeing my friends a lot
  • not being able to enter certain areas of shops/cafes/homes because of the scents, smells, environments that seem to be really good at sending me in to coughing fits
  • not eating/drinking anything with a strong flavour for the above reasons
  • not singing along to songs in my car because my voice just won’t let me and if I manage to croak out a few words, I’ll be voiceless afterwards
  • taking a week of annual leave before Christmas, not because I have any plans but because I know my body couldn’t hack working another 5 days
  • not being able to get through the day without a nap or looking like a zombie, it’s like my batteries just run out completely and I physically have to recharge

Some of these adjustments sound petty, trivial and moany. This isn’t an exhaustive list but they’re things that make me feel like me, give me a sense of independence, fun, spontaneity, youth and a happy ‘go with the flow’ attitude. If I’m completely honest, I’ve found myself saying no to far more invitations than I’d like because I feel rubbish or because going along to them will sap my energy completely and I’ll have to spend days recovering. 

Perhaps more seriously, I’ve had to adjust what I think my body is capable of. This is a hard one for me. I feel like I can’t trust my own body, I feel like as soon as I’m fooled in to thinking I’m well acquainted with it, I discover another problem that was completely unexpected and knocks me for six. I can no longer depend on it. I can’t be sure it’s there for me to fall back on and I think that’s something I’m going to need to continue to try to adjust to.

Now it’s the vocal cords

“On the first day of Christmas my body gave to meeeeee…

One floppy windpipe…

Two misbehaving vocal cords… 

Zero gold rings, some tricky severe asthma and a trip to see Speech and Language Therapyyyyy.”

Most people slide in to December defrosting their car and making their way through an advent calendar. Don’t get me wrong, I’m feeling pretty festive and love all the twinkly Christmas lights but I wasn’t quite expecting the first day of advent to bring me Inducible Laryngeal Obstruction (ILO for short).

I didn’t know your vocal cords could stop you from breathing

I spent 4 years of my life studying for a degree in Biomedical Science. I’m fascinated by how the body works and am fortunate to surround myself with medically-minded friends: doctors, nurses, researchers, speech and language therapists and radiographers but I would never in my wildest of dreams have thought that my vocal cords could make me breathless. 

If you’re a regular reader then you’ll remember me waxing lyrical about my saline nebuliser treatment not working and it turns out this is probably why. Essentially, we think that inhaling super-salty 7% saline solution on a daily basis has not worked wonders for my airway. Instead, it’s really irritated my upper airway along with my other sensitivities so now I’m basically coughing and breathless after any and all of the following triggers:

  • changes in temperature
  • colds
  • laughing/crying
  • exercise
  • smells e.g. cleaning products, perfumes, food
  • speaking too much (yes really)
  • eating certain types of foods
  • singing (it’s never been good but it’s now impossible to do anything but croak)

Even if I’m not doing any of the above, I can have a seemingly random attack where I’m left breathless and coughing like a seal for doing nothing but breathing in and out.

It’s like the cherry on top of a really rubbish cake

Inducible laryngeal obstruction (ILO), sometimes called vocal cord dysfunction (VCD) is something that is causing me problems on top of the tracheomalacia and asthma. It’s not replacing any of those treats, it’s an added extra. 

Essentially, it’s restricting my airway in and around my voicebox (larynx) around the level of my vocal cords. They are inflamed and in spasm, constricting so that I have a tiny and very narrow gap to breathe in and out of, hence the breathlessness. This is caused by the irritants listed above and seems to be happening to me 20-30 times a day as well as through the night. It’s probably been a huge factor adding to my already depleted levels of energy and my reduced quality of sleep. My vocal cords aren’t letting me catch a break at the moment which is why I appear breathless even at rest and why I never seem to feel restored after sleep.

They sprayed Lynx Africa at me in a medical examination

I was fortunate enough to have what’s called a ‘provocation laryngoscopy’ to confirm all this which is very similar to a bronchoscopy but a bit of a smaller tube and doesn’t go all the way down in to your bronchi. The provocation part seemed innocuous to me but it turns out, it wasn’t. To mimic the irritation, they genuinely got out a can of the most potent deodorant known to mankind and made the room smell like the back of a school bus. It was horrid but at least they discovered a reason behind why stuff has been so difficult lately. 

What next?

I’m actually really lucky that my consultant was able to get me seen by the airways service team who slotted me in to their clinic on the day. This meant I managed to circumvent a pretty long waiting list and get seen by the right people at the right time when I was symptomatic. The team work very closely with my existing medical team, respiratory physios and other colleagues which is great. They are planning to get me in for some intensive speech and language therapy as a block this side of Christmas (fingers crossed for cancellations). They suggested speech and language therapy as some techniques may chill my vocal cords out a bit, relaxing them and allowing my airway to become less constricted. I can’t wait to see how it goes and what the rest of advent brings!

Shouting in to the Google void

When I got the diagnosis of subglottic tracheomalacia. I sat there bleary-eyed and not really able to take stuff in. I’d just had a bronchoscopy which involves shoving a thin flexible tube (about the width of one of your finest HB pencils) up your nose and down in to the back of your throat. This all happens while you’re awake and after snorting some acrid ‘numbing gel’ under some mild sedation that makes you a bit drowsy but still alert to the fact that there are 4 nurses holding you down and a doctor navigating the camera down into your windpipe.

It was about an hour after my bronchoscopy when myself and my parents were ushered in to a room to talk to the consultant about what he’d just seen on the big screen. He told me that he was expecting to find something called tracheobronchomalacia (TBM for short). This would’ve meant floppiness further down the windpipe, near or in to the bronchi (where the windpipe/trachea splits in to two before reaching your lungs). Instead, he found a floppiness and the top of my trachea – near my larynx. This was apparently more complicated, rare and less treatable as the malacia is near some pretty important structures.

It was a lot of information to take in and was very overwhelming, in part due to the nature of the news (it wasn’t expected at all and wasn’t pleasant to hear) and partly due to the fact that I was still a bit drowsy from the bronchoscopy. I was so relieved my parents were there to absorb the information I couldn’t. Between the three of us, we were able to digest the key points and puzzle over the bits we missed out.

“Be careful when you Google it”

That piece of advice from the consultant stood out for me. I love Google. As many who know me, I have a thirst for facts and love that a quick Google brings a whole host of knowledge to our fingertips in fractions of a second. I’m curious about the world and will find myself ‘having a quick Google’ about anything and everything. I’m sure I’m not alone among my fellow millennials when I say that I’ll Google symptoms when unwell, scare myself in to thinking I’m mere moments away from death and then go to see the GP anyway.

Tracheomalacia isn’t something I’d ever heard of before, wasn’t even sure how to spell it at first attempt so I was naturally itching to Google away and unearth research papers, NHS information pages and any articles about it in the news. When faced with the unfamiliar, I always Google it so why not now?

The consultant was warning against search results from America as they offered more experimental and radical potential treatments that are unavailable or deemed dangerous in our healthcare system. As someone who considers themselves to be scientifically literate, I understood his concerns but couldn’t help myself from doing it anyway. I just wanted to read what people were saying about it.

Turns out, there’s not a lot out there

The vast majority of results on my favourite search engine relate to congenital tracheomalacia which is something seen in babies and usually gets better after 18-24 months. This is because in babies, cartilage gets stronger and the trachea continues to grow. Google shows quite a bit about tracheomalacia in babies, including support groups and research studies with some pretty positive outcomes. For acquired tracheomalacia in adults, there’s far less out there that’s on offer from the search engine. Even fewer results for tracheomalacia compared to TBM mentioned above. Location, location, location and age means quite a lot it seems!

It’s okay, I’m being looked after by the right people

I’m sure I’ve spoken before on the blog about how fortunate I am to be under the care of one of the few specialist centres for this type of thing in the UK. I am fully confident and trusting in my consultant, he’s clearly one of the leaders in the field. That being said, they are very transparent as to how limited treatment options are at the moment and are clear that any significant interventions could be up to a decade away.

When I’m at the hospital, both in the clinic and as an inpatient, the message is still the same: “there are no easy answers and this is a very difficult condition to manage.” Again, that’s fine, I understand research takes time. It’s just difficult to be met with a wall of question marks and no relief when you’re significantly unwell and even the most advanced medical professionals are uncertain as to what could be the appropriate next step.

This brings me back to Google

With limited information and my clinic appointments three months apart (a massive chunk of time when you can’t breathe), I turn back to Google. I want to know more, I want insight, evidence of research and to hear from people in a similar boat to me. It’s a really bloody lonely boat at times so I shout in to Google in the hope that something, anything comes back.

What I’m met with is a community of people who are also desperate. They each have different circumstances, different diagnoses and different back stories but all seem to be united in the hunt for more information. They too seem to feel isolated with their condition, frustrated by the lack of knowledge or progress and understanding of their condition. They have unanswered questions. They share treatments, side effects, tips and tricks and signpost resources. They offer help and support each other, building their own communities that fill that lonely gap between appointments. I never knew there was such a treasure trove of lived experience out there, granted, not of tracheomalacia but of other chronic conditions. It hints at a huge disconnect between support provided and support needed and is quite sad to read the desperation in many of the posts on patient fora. The sense of community is strong though and it’s such a useful resource – thanks Google for bringing it within my reach.

It’s okay to be unwell

Posting this after another reminder from my extremely supportive partner that I need to stop fighting my own body and let myself be poorly (said in a lovely Teesside accent).

Allowing myself to stop and let my body take control is one of the biggest learning curves I’ve struggled with. The reality is that chronic illness doesn’t give you a choice. Eventually, I have to succumb to the fact that I’m ill and just let it take over and do it’s thing. The problem for me is: when exactly do you admit defeat?

If I’m completely honest, I don’t like to accept that living with tracheomalacia involves making some pretty serious compromises and adjustments. I still find myself refusing to acknowledge that I can’t do X, Y and Z because of it and I struggle to admit when I need to slow down.

The thing is, everyone is right when they say “your health is more important” and “look after and listen to your body” and it’s exactly what I’d be preaching if the roles were reversed. I just have issues with the fact that it’s not a choice. It’s not my choice to struggle with this and to me, it’s not really ‘okay to be ill.’

Why, what’s the problem?

Being a little bit poorly on a short-term, finite basis is manageable to me. I can deal with cough, colds, scrapes, broken bones and whatever else because I can see an end point and they get better. The difference is that a chronic illness is an ongoing physical health condition that can’t currently be cured and requires ongoing management over years, decades and my entire life.

With my tracheomalacia, it’s not actually being managed at all at the moment. This just means that if I get a cough/cold/infection – it triggers a whole series of events that make my health deteriorate to a point where I am so uncomfortable, I end up going to hospital. There is currently no treatment or support being provided for this, simply because they don’t quite know what to do. Again, this isn’t the doctor’s fault – they’re trying. It’s that I’m in a weird, vulnerable situation that means I know that when I’m unwell there is nothing at the moment that makes me feel better. There’s nothing that soothes my symptoms or provides any relief, however short-term.

This all leads to me feeling angry with my own body. It feels like a let down, it’s one of those situations where I’m both mad at it and disappointed in it…the worst concoction. It all just feels so very personal, like my tracheomalacia is a personal attack on my own wellbeing. My happiness, my social interactions, my work, my relationships, my life. What could be more personal than your own body turning on you when you’re just trying to do the basics?

For me, it’s still really not okay to be unwell. There’s a huge discrepancy between what I want to do and what I’m capable of doing and the frustration is very real. I want to go to work regularly, nothing too glamorous. I want to be able to walk up the stairs without being out of breath, no biggy. I want to be able to commit to days out with my partner and friends, just the standard.

The commitments and practicalities life throws at you don’t disappear just because you’re ill. They certainly don’t neatly time themselves and go away when I’m having a flare up. They keep going. The 9-5 working week sounds mundane to some but it makes me feel human, come on body – let me at least do that!

Rationally, I know that I have to learn to work with rather than against my body. I have to adapt and go along with it, there’s not really a choice anyway so I guess removing the friction between mind and body would make the thing a whole lot smoother.

Out of Order

I finally returned to work last week after an almost laughable streak of bad luck that will probably fill another blog post worth of content – promise I’ll treat you to the juicy details at another point. 

Tuesday 6 November was the day I plucked up the courage to challenge my body with work. Yeah, yeah, I know my job is largely desk-based but the physical act of getting in the car, driving to work, moving myself from the car park and getting to my desk (on the top floor of a fairly big office building) is a task in itself. Not to mention nipping up and down the building and across site for meetings or to grab a coffee. At the moment, I can only just about cope with the above. Yep, I’m not proud of the fact that getting to work in the morning saps most of my energy for the day – it makes me feel so unfit and like a reallyyy reallyyyy old lady. Don’t get me wrong, I love old ladies, my Grandma is my hero but at the same time she’s got 60 years on me and I’m not quite ready for my mobility to be poorer than hers!

Talking of elderly women – It’s not just getting to my desk that I struggle with. My energy levels and breathing is so poor at the moment that over the weekend, I had to have a disco nap during my partner’s 87 year old Grandma’s birthday celebrations…

All of the above is meant to act as a bit of context as to why I really need the lift in my work building. It’s not something I rely on all the time but when I’m having a flare-up, it becomes a vital means of me being able to get to my desk and get back to work. This is hugely important for me as being at work does wonders for my mental health – it actually makes me feel like a functioning member of society again. At the time of writing, the lift in our building has been broken for over a week. This means that the only way for me to get to my desk is an endurance challenge involving me climbing 4 steep flights of stairs and panting/puffing/coughing my way along the corridors. It not only makes me feel really unprofessional and slightly embarrassed, it saps my precious energy and just becomes another obstacle in the way of me getting through my working day. I’ve reported this several times to our building manager, who has in turn being doing their best to get estates to rectify the issue but it falls on deaf ears.

This week also saw the first ever “Purple Tuesday” in the UK. It was labelled as a day aimed mostly at customer-facing businesses to become more mindful to make changes to improve the disabled customer experience over the long term. Basically, a national day of visibility for accessibility on the high street. Despite my original gripes…see: “Why isn’t this just standard practice” and “Why is it being pitched to retailers as a way to make more money from those with disabilities rather than something that is enforced due to being a protected characteristic/ the Equality Act 2010?” It looked like a move that could, at the very least,contribute to raising awareness and visibility of the issues surrounding accessibility on the high street. I certainly saw several shops in my area advertising their support for Purple Tuesday and read a breadth of articles. It was picked up on local and national news channels too, so why had the message not filtered down to my workplace? How could it be that my building was left inaccessible?

It hasn’t just been a problem for me. The catering contractors were unable to deliver their orders due to the lack of a lift. We struggled to prepare for external events as there was no way to transport bulky items out of the building other than using the stairs. It has been reported multiple times. It has been raised with our Safety, Health and Environment group as an issue but they are unwilling to take responsibility for it.

The whole experience seems to suggest to me that unless somebody with more power and influence starts to take these issues seriously, it’s something that will be overlooked until an embarrassing problem occurs. It has really made me think about visible vs invisible disabilities and the need to not assume that because a person may appear ‘able bodied’ they do not need additional support. It’s so frustrating to watch a system that is unwilling to change unless it has direct experience or is directly affected by accessibility issues. I cannot fathom how this can be a problem in 2018. Turns out, it’s not only the lift that’s ‘out of order.’

I’m 28 years old and my Dad blow-dried my hair today

I’m not talking about a professional curly blow that left my locks all glossy and bouncy, nor am I talking about a sleek straight blow dry finish. I’m talking about a messy but functional blow dry from a man who loves me dearly but who doesn’t believe in the power of using a nozzle to direct the flow.

I’m laughing to myself while writing this as the last memory I have of my Dad even attempting to style my hair was as a child (age 7 or 8). Picture the scene: Mum was working on a night shift and wasn’t home yet. My brother and me were probably being uncooperative and were unaware that Dad would need to go to work or fit with any other schedule other than our own. I’d probably landed it on him without notice that my hair needed to be up for school that day but I didn’t have a bobble. Pretty sure he took to the task with the determination of a ‘stressed out Dad that wanted to look after his little girl’ but executed it like a ‘Dad who had no clue about hair.’ I can remember him trying to grab my hair with his fist and scrunch it in to a ball, twisting it in to a mass that sat lob-sided and messy somewhere on my head. It was held in place with an elastic band and I looked as though I’d been dragged through a hedge backwards.

Back to today. I saw the same desperation in Dad’s eyes, he still wanted to look after his little girl and the only thing that changed since the ‘Dad ponytail’ is that I’m 28. I still needed his help today, same as I did 20ish years ago.

I’ve not done anything at all strenuous for over a week now. Not because I don’t want to do it, but because at the moment, even making a cup of tea is strenuous for me.

Today, on the warped scale of what saps my energy at the moment…I ‘over-exerted’ by having a bath. Yep, I felt like I’d ran a marathon and hadn’t slept for a week. Instead, the grand total of what I’d actually achieved today is getting out of bed and sitting on the sofa for an hour. The bath just finished me off for the day. It’s so hard to eloquently describe how much of a struggle things are at the moment and I think it’s even harder to describe the frustration.

Every single time I have some form of ‘flare up’ with my tracheomalacia, the coughing and breathlessness being the most problematic symptoms. I go right the way back to square one. I can’t walk to the car without being completely shattered. I can’t sleep properly because I cough through the night and I’m pretty sure my trachea flops shut at various points. I feel genuinely knackered and have to really strip back any goals of what I want to achieve each day.

On a better and more normal Friday, I’d wake up around 7.30am and head to work. I’d walk around the building I work in, walk to several meetings across the site, have a walk at lunchtime, complete my work and then take a 3 hour drive to Middlesbrough to see Emily where I’d have dinner and stay up until around midnight. Nothing too wild!

Today I woke up out of breath after a very broken sleep. Went downstairs – about 14 steps, knackered. Sat on the sofa, still shattered. Had a bath, exhausted. Ate breakfast, so tired. Had my Dad blow dry my hair… absolutely shattered.

I keep trying to make sure I do things each day to try to build up some stamina or strength or something/anything?! I don’t want to sit and be a couch potato, that’s not me. I want to keep trying but it’s so frustrating haven’t to start over every single time something like this happens.

Just very thankful for my brilliant and loving family and their unconditional willingness to attempt hairstyling. 😉

It’s a bit like the Truman Show

Over the last couple of weeks, I’ve been feeling very much like a bewildered Jim Carrey when he finds out that his life is actually a reality TV show. To illustrate this more accurately, I’ll describe some of the details of what has happened including the ‘juicy bit’ which includes a lovely hospital stay.

The backstory

It’s cold season! Naturally, I caught a cold. Weirdly, it came in to full-swing during a mini-break to Barcelona (it’s a pretty strange sensation to feel so rough when it’s so sunny and there’s so much pretty everywhere!) Usual pattern of headache, temperature, sneezing, snot, more snot, more sneezing, chest tightness, cough, more coughing, even more coughing, breathlessness, coughing resulting in breathlessness, more coughing…non-stop coughing…non-stop breathlessness and yep, you guessed it…non-stop coughing.

It’s not getting any better, hang on…I think it’s getting worse

Now, don’t get me wrong. I can cope with a cold! Granted, they’re unpleasant and make you feel quite grim but I know they go away eventually. It’s the after-effects for me which aren’t so easy to deal with. The cold seems to have irritated my airways which makes me cough. The cough (yep, that barking, seal-like cough) is something that causes my airway to shut which results in breathlessness and actually more coughing.

During this time continued to go to work because:

  1. I actually enjoy it.
  2. It makes me feel like me.
  3. It distracts me from how bad I actually feel so I consider it to be almost medicinal?

But I also started to admit that I needed help because:

  1. My cough and breathlessness were getting worse
  2. I was getting really, really tired
  3. I’d been taken off my medication a few weeks earlier which meant…
  4. I had no relief from these symptoms at all…
  5. Even my inhalers were making things worse
  6. My next scheduled appointment with my consultant wasn’t until the end of November
  7. My GP doesn’t know what tracheomalacia is/admits it’s something that only the specialists should advise on
  8. I knew in the back of my mind that if I didn’t get help, I was deteriorating and would end up being admitted to hospital. This is something I wanted to avoid at all costs

I contacted the hospital several times via email and telephone (the mechanisms I’d been told to use if I needed help) and got no response at all. In the meantime, my symptoms continued to get worse so after struggling for the best part of two weeks, I bit the bullet and went to A&E.

The interesting bit

I’m not sure many people describe their patient journey through the hospital, it’s one full of twists and turns so here goes:

  • Emily and I arrived at A&E, checked in and waited about 10 minutes to see the triage nurse.
  • The nurse took my blood pressure, measured oxygen saturation, heart rate and listened to an overview of my symptoms. She also read the letters from my consultant that I carry with me.
  • She immediately found me a bed, alerted other members of staff and I had a cannula inserted and blood taken all within a few minutes. Someone also came along to take copies of my letters.
  • An A&E doctor came to see me within about 30 minutes. Again, she listened to me and discussed what was going on. She suggested trying a nebuliser but then listened to my concerns about it irritating my airway and so decided to ring the chest team for more specialist advice.
  • In the meantime, I was moved to a room in a slightly different area of the department.
  • A doctor from the chest team came to see me within another hour or so of waiting. He told me that my X-Ray looked clear (funny, I hadn’t had a chest X-Ray). He asked me questions, I answered them. It was clear he wasn’t listening as he repeated back to me a couple of things that I had given the exact opposite answer to what he was describing. He repeated that I was on my PARI-PEP nebuliser medication, I wasn’t and I’d already told him that. He told me that my peak flow was stable it wasn’t, but nobody had tested it. Eventually, he said that he’d measure my peak flow and call my consultant and his team for advice. Great….or so I thought.
  • Somebody came to measure my peak flow. It was 280, about 60% of my normal.
  • They came back and said “Your peak flow is fine, the doctor said you can go home now.”
  • I was quite shocked and replied “What?! I thought he was going to ask for further advice?” They responded saying “No, he said you can go home” and also brought another nurse in to the room to confirm this.
  • Feeling confused at this point, I asked if they could check this with the doctor as it wasn’t what I understood the plan to be.
  • The doctor returned and told me that he hadn’t ordered for me to be sent home and that (not one but TWO nurses must have misheard the message). This seemed quite suspicious and started to upset me as at this point, I was just desperate for some help or relief and stated that I didn’t mind going home as I really didn’t want to be in hospital but needed a plan in place first. He then started to say that I had bronchitis and needed a chest X-Ray which was odd, this was the first time I’d heard any of this and a few minutes earlier I had been told by two people to go home. The same doctor ordered for me to be admitted to a respiratory ward, kept apologising and touching my arm and started ferociously scribbling notes and admitting that he needed to seek further advice.
  • I was sent to the chest ward at around 5.30pm, greeted with a nurse who barked “Bed 25” at the porter and was wheeled to my prospective bed. After an hour, a nurse came with a pack of swabs and I was told to do them in my own time and hand them back. I did them immediately and notified several members of staff about them but they were left uncollected right up until I was discharged.
  • I received no water and no food until 8.00am the following morning. Don’t worry, I wasn’t without – my Mum and Emily had bought some for me but the point is, nobody on that ward knew whether or not I had any food or drink until the following day. This is something I find really unsettling, not for me but for patients without a voice or a family member to advocate on their behalf. They can get left behind in a system that is over-stretched and under-resourced quite easily.
  • At about 7pm, I was visited by a chest consultant who I had seen for 2 years prior to my diagnosis, the doctor from earlier in the day and another doctor. They reiterated that I needed to be seen by my consultant or someone from his team as to whether I could be started on CPAP and that they would make arrangements for this to happen the following day.
  • A sleepless night of machines beeping and confused patients wandering around the ward singing and trying to get in to the wrong bed, patients having panic attacks and patients falling more and more unwell. All ward lights were on until after midnight and my ward neighbour continued to watch TV full blast without headphones and remark that I was “too young to be in hospital.”
  • I was seen by a new consultant from the team I’m under who agreed that CPAP was the next and only remaining thing to try. He reminded me that tracheomalacia is a chronic illness with no current fix and that any surgical interventions were years and years away. He was trying to point out that there really wasn’t much they could do to help other than try CPAP but highlighted it only works while wearing the mask so at best, I would maybe have more energy in the day and that I’d need to adapt to life with tracheomalacia as best as I could. He pointed out this as a tenuous and un-welcome silver lining:

“Yes it’s a chronic condition but I guess, the silver lining in all this is at least tracheomalacia won’t kill you.”

  • I’m not so sure that was a great silver lining to hear. Infection associated with tracheomalacia certainly can kill me. He agreed that I needed an appointment in the clinic to try to figure out a way forward and get me on CPAP and that he’d try to arrange this to be as soon as possible. Which is great, but until then, there really wasn’t anything I could do to make myself more comfortable.
  • I was then visited by various pharmacists, a PhD student who shuffled up to me without introducing himself and asked if I would take part in research looking at how asthmatics respond to inhaled steroids by giving blood and urine samples over a period of several hours. I told him that I had tracheomalacia. He looked at me blankly and scurried away.
  • Finally, I was visited by a ward physiotherapist who asked whether I could get around. I replied “Not really, I’m struggling a fair bit at the moment.” She asked what with and I told her that showering and getting dressed were issues for me at the moment. She said “Oh it’s okay, most people struggle with those.” I wondered who ‘most people’ were and was pretty sure she was referring to her sample size of the 80+ year olds on the ward. She said “To help you get dressed, it could help if you lean against a wall for support.” Again, what? Then she asked whether I lived with anyone. I replied yes and she said “Oh, that’s fine then…you’ll be okay at home.” Not sure what the criteria was for ‘okay at home’ but at this point, I just wanted to be anywhere else but in hospital so I nodded along like the dog from the Churchill car insurance adverts.

What now?

Good question. Now, I’m pretty much in a similar state to how I was before being admitted to hospital. I was promised that my appointment would and needed to be brought forward but haven’t heard anything as to how long this would take. If I’m honest, I’m feeling pretty frustrated and hopeless about everything right now. I just want to go back to work and get back up and running as much as possible but feel that any hope of possible ‘relief’ is in the hands of a medical secretary bounded by several hospital systems and too many patients.

It’s just not working

I’ve always distantly appreciated The Verve. As a band, they’ve got some pretty powerful songs that have a nice familiarity to them whenever I hear them. I particularly like ‘Bitter Sweet Symphony’ on long car journeys through dramatic scenery, makes me feel all invincible. Anyway, one of their other hits ‘Drugs Don’t Work’ has been the soundtrack to the last few months for me. The line “drugs don’t work, they’re just making it worse” is ringing true in my mind.

It turns out that blasting really salty vapour down my throat for the last six months hasn’t been doing me any good. I’m a rule follower and hate being ill so I was religiously taking my 7% PARI-PEP (Positive Expiratory Pressure) nebuliser as prescribed by my doctor. This continued on a daily basis and yeah, it was quite gross. I had in my head “No pain, no gain!’ so kept telling myself to grin and bear it to keep my airway in top shape. I guess I likened it to some obscure beauty treatment that would be worth it in the end?!

I’m not sure if it was that, anxiety or just blind ignorance that prompted me to continue taking my medication daily without question but I didn’t really have anything to compare it to. It wasn’t until August that I allowed myself to notice something wasn’t quite right. I’d started coughing like a seal quite a lot and my breathlessness was getting worse despite not actually feeling ‘unwell.’ My nebuliser was getting really quite difficult to take, leaving me coughing and breathless for hours each night. I felt quite lost having pinned so much hope on the medication sorting me out and putting all my eggs in the ‘but the doctor’s say it’ll work’ basket that I started to ignore some pretty clear signs from my body.

I wasn’t coping and my breathing was getting worse so I sought some advice from trusted medical professionals who eventually, (after a trip to resus, suggested antibiotics, an X Ray, several confused respiratory doctors and nurses who were desperate to give me steroids) suggested I cut down on my nebuliser to every other day or a few times a week.

Again, I followed this advice because there isn’t anything else that seems like a reasonable approach (yep, not even on Google) and continue taking the medication 2-3 times a week. Still really unpleasant so drop to once-ish a week. Still reaaaaaallllly hard.

What it actually feels like to have salty vapour blasted down your throat

It’s a weird sensation, a really weird one. Like trying to vape a high pressure hose in your garden that’s been spiked with sea water? It’s like there’s a sizeable bloke wearing chunky boots stood on your chest while someone else is tickling your throat with sandpaper. My chest sounds really squeaky and bubbly like it’s been disinfected but the crap has nowhere to escape apart from a tiny, tiny hole (think that’s the wheeze). This happens while I sit there looking like Spyro the dragon and surrounded by the sculpture I’m trying to create from vials of saline solution. Afterwards (and although I’ve been sat down for ten minutes), I cough loads and loads, can’t breathe and struggle to speak so I just croak instead.

The magic mailbox

This deserves a section of its own as it’s such a great example of the system working and is the sole reason that for a few days after finding out my medication isn’t doing anything I was absolutely elated. I was genuinely delighted with the efficiency of the whole process that it put rose-tinted spectacles on me for what it actually means when my medication doesn’t work!

Here’s what happened:

  • On a Monday night after another uncool nebuliser experience, I got really cheesed-off so sent an email to this vague-sounding email address I’d been given after my last hospital visit
  • Email consisted of me explaining the situation and asking for a bit of help from someone…anyone…whoever was on the receiving end of the mystery mailbox. Sent at 9pm.
  • Phone call from a private number at 10.00am the next day
  • It was the respiratory physiotherapist! She asked me loads of questions about my symptoms, talked them through with me and listened to my weird wheezy descriptions
  • She explained in a really careful and detailed way that I should stop taking my nebuliser because it was sending my asthma wild and that would kick off the tracheomalacia issues
  • She also said that she’d check over this plan with my consultant and get in touch if there was anything different
  • She patiently listened and answered my “But what do I do if?” and “I’m just worried because…” questions.

What’s the plan now?

The answer is, I’m really not sure. I feel really quite vulnerable going in to this winter period without the invisibility cloak of some nebuliser ‘protection’ and kind of just want to wrap myself up in bubble wrap and hope for the best. I always knew this winter would be a trial and error period but it’s not pleasant being the guinea pig on this occasion! Will see what tricks they pull out of the hat next…

Paranoid or prepared?

September is ‘Back2School’ time of year. It’s when social media floods with photos of children in over-sized school uniforms they’ll probably never grow in to. It’s when Clarks turns in to school shoe war-zone and it’s the month you see more cars on the motorway that are full to bursting with IKEA’s finest selection of student basics. It’s a time of new stationery, new routines and good intentions.

Paired with all of the above is a change in season. The leaves start to turn beautiful autumnal colours, they get a little crunchy under foot and there’s a bit of a chill in the air that means I have an excuse to buy more knitwear. The weather changes, we start to dust off our boots from last year and take our brollies around with us like a piece of useless armour that has absolutely no chance of shielding us from the elements if it’s windy AND rainy.

September is a month of colds, coughs, sneezes, bugs, high temperatures and wheezes. It’s when you hear people being struck down by “fresher’s flu” or have most of the class wiped out by the same cold. It’s the month that seems to mark ‘ill season’ for me. A period of around six months where I feel I cannot rely on my body to be ‘well.’ It’s a month where I take extra precautions to try to beat the somewhat inevitable hospital admission.

I’ve been thinking a lot about this and know, to some extent, it’s normal for me to worry about getting ill. Nobody enjoys it, you’re kind of meant to feel pretty grim. Therefore it seems natural to not want to feel poorly. I just don’t want to spend too much time worrying about it. Then again, the pattern (oh I love patterns) over the last decade seems to predict some kind of certainty that I’ll be pretty unwell again. Even the doctors tell me to expect it.

So, this leads me on to precautions. The stuff I can do to help prevent the inevitable. The tiny little elements that I can pretend to take control of. Medically, I’ve started taking antibiotics and will continue to do so until March 2019 at least. I take my medication almost religiously. I’m consciously keeping my beady eye out for the NHS text message telling me to get a flu jab and I’m absolutely slamming the multivitamins and probiotics.

What else? I bulk-bought mini bottles of hand sanitiser for my bag, car and desk at work. I’ll be wearing a scarf over my nose when I go outside in the cold. My Grandma is strongly encouraging regular consumption of honey (’cause she read it in one of her magazines) and obviously I try to steer clear of anyone with the sniffles.

When I’m feeling well, I try really hard to move and exercise more. This is something I want to keep up but again, when I can’t breathe it becomes a marathon-like task to make a cup of tea…let alone go for a run! This is quite important because any extra weight puts a little bit more pressure on my chest so I try to eat well and move more to prevent weight gain and encourage weight loss. This gets tough on high doses of steroids too, but I’ll keep trying.

Does this make me paranoid or just prepared? Would appreciate hearing thoughts of others as I keep flip-flopping between the two!

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Are you wondering what I’m talking about? Read my first post where I am to explain all about tracheomalacia.

Everyone loves being listened to

Me included!

Last week I had my first hospital trip of the season although unlike the football, I was hoping to delay kick off until at least September. It was the first visit (not counting my outpatient season ticket) since my tracheomalacia diagnosis so it felt a bit like a pre-season friendly to test out some of the tactics I’d been revising all summer.

There were two things I was dreading from my meeting my hospital opponent:

1. Standard asthma protocol: antibiotics, nebulisers, peak flow meters and a shed load of steroids). This has happened to me throughout all of my previous matches in hospital but often, doesn’t actually help. Particularly worried about steroids and the effects of taking them on a regular and long term basis.

2. CPAP: Continuous Positive Airway Pressure. One of these massive masks being strapped to my entire face and having air continuously blasted down my airway while I’m struggling to breathe. Here’s a nice little photo reference of the lovely CPAP mask.

Even though I know that ultimately, CPAP will help to artificially stent my airway open through the positive pressure, I find the concept quite daunting and a little harder to get my head around especially when I’m out of breath anyway.

Match report

What actually happened during my first hospital fixture of the season was really refreshing.

  • Each member of staff I encountered in my journey through the hospital listened to me
  • They all read the letters I had with me (these are written by my consultant explaining my condition and making suggestion of what to do in an emergency)
  • They saw asthma in my records but didn’t assume that was the only problem and didn’t start immediately with steroids
  • I was seen immediately by a respiratory doctor who wasn’t completely familiar with the condition but they called the consultant to flag my visit in the hospital and to ask for advice
  • A member of my consultant’s team came out to see me, listened to my symptoms, explained the problem, came up with a solution and gave me an email address that I could use to ask any additional questions in future

All of this was a dramatic change from last season, it was in a different league. I was listened to. I was able to explain my symptoms and nobody assumed anything. This was incredibly important to me as often, I worry about being able to communicate effectively when I’m struggling to breathe and I worry that I’m not understanding the signs my body is giving me sometimes. It made the process much less stressful and intimidating and again reminded me just how lucky we all are to have the Premier League NHS there for us both in and out of season.

Sorry for all the football references, I committed to using them half way through but now feel a bit silly as I know nothing about it.

Are you thinking “What the hell is tracheomalacia?” – read my first post.