Where do you see yourself in 5 years?

It’s a standard interview question. Where do you see yourself in 5 years? Most people have a well thought out response that they trot out, because unless you can see the future, no one actually knows. In my interview for my first teaching job, I said ‘be a head of department, specialise in developing a curriculum specifically for SEN and EAL pupils and teach some French’. Gold star for me, I actually did all of those things in the 5 year period.

Rather than 5 years, people often have life goals they want to have achieved before milestone birthdays. When I was 21, a group of friends who were all closer to 30 than they were 20 were discussing the key characteristics for a husband and what they wanted to have achieved by the time they were 30. I remember thinking a) this is stupid- who can seriously plan out their lives like that? and b) how boring. Are you allowed to deviate from the plan at all? By the time they were 30, none of them had married yet, their partners were pretty much the exact opposite of what they’d been discussing and they hadn’t had babies, like they’d all said they would. Most of them were doing well in their careers though, which also came up. Does that mean they failed? What was the point in the discussion at that time?

It was for show. They were all friends so it wasn’t consciously malicious, but it was an example of how we as society think we need to be on the same path as everyone else, and if we’re not, we’re failing at life. It’s particularly noticeable in women because we’re still made to feel like we have to choose between being successful in a career OR having a family.

But the only true goal that we’re all born with in life, regardless of your demographic or upbringing, is that we all want to live for as long as possible. The rest of it isn’t a given: not everyone will get married, have children, buy a house or be successful in their careers, despite what we think or aim for in the western world. Some people face famine, civil war and domestic violence before their 30th birthdays. In comparison, not having married your dream husband doesn’t seem too bad! But we all want to live for as long as we can, our bodies are programmed to survive.

We live in a world of statistics. There’s a statistic for almost everything seen as ‘life changing’. In the UK, 1 in 2 people born after 1960 will receive a diagnosis of cancer of some sort. 9 in 10 people won’t survive a cardiac arrest outside of hospital. 1 in 4 women will miscarry or lose a baby. I didn’t make those up by the way, they’re real from authentic sources. So we do everything we can to fight against the statistic or support people who become one of those statistics. But it’s the things that there aren’t significant statistics for which we should be paying attention to. People who become paralysed after a car accident. Patients diagnosed with rare illnesses or illnesses where there’s no research or funding (I partially mean me, you’ll see why in a minute). Unreported crime, like domestic violence towards males. I can’t give statistics for those because I can’t just type into Google like I did with the first lot, it would actually involve research. These things are still life changing, but there’s less support in society for those people.

It’s not nice being any statistic, but it’s doubly not nice being a minority statistic. While it’s clearly nowhere near the same as being involved in a Civil War, it equally doesn’t always feel like you ‘fit’ in the world of people setting society appropriate milestones or being supported through something that’s statistically ‘life changing’ before getting back on the ‘right path’. Why does society put pressure on us to get back on the right path, why can’t we make a new one? What’s the point in having a statistic to inform us of something and label us, if we’re just going to insist on people returning to ‘normal’ after they’ve been through it? What if you don’t fit into a statistic? Or, what if you are one of those statistics I mentioned and you don’t want to be labelled like that?

At the last interview I went to a few years ago, the 5 years question was phrased slightly differently: ‘Where do you see yourself in the future?’ No time frame. No emphasis on supposed greatness or career. I liked the question, although it surprised me. So I said ‘being the best version of myself I can be’. It came out without thinking, but I think it’s a good answer (even if I do say so myself!). By the time I’m 30, I won’t have achieved society’s version of life milestones, except for having got married. I won’t be a recognised statistic. But I do hope that I’ll still be alive and trying to be the best version of what I can be. And, thinking about it, I might end up being happier than those people who feel they have to live up to society’s expectations.

 

Advertisements

Anyone Can ‘Get Sick’

Anyone can have poor health. This time of year is an anniversary of that fact for me, as well as it being our wedding anniversary! Brilliant timing huh? 😉 

Except when you’re healthy, you think that ill health will never happen to you. You think getting a cold is the worst thing ever. It’s hard to think that anything will change that dramatically that quickly. I ate healthily, exercised often, had a perfect BMI, didn’t smoke, rarely drank alcohol and didn’t drink any caffeine. I was the healthiest I ever was. And then I wasn’t anymore. 

At my last consultant appointment we talked briefly about quality of life now versus later. That’s a great conversation to be having aged 29. When most people are finally acknowledging they’ve got to stop abusing their bodies which comes as part of being in your 20s (alcohol, parties, rubbish food), and starting to have children and families, I’m talking about osteoporosis and how I can slow down diabetes, both of which I’m showing signs of, and speculating about other illnesses I’m likely to get. Fun times! If you’re still thinking ‘that won’t happen to me‘, remember I had a good diet, kept myself healthy and did exactly what my Doctors told me. The NHS is a wonderful thing, but you can’t cure many illnesses, you just have to learn how to live with them. 

Anyone can get sick or be in an accident. It can happen overnight and it does. No one should take their health for granted because it’s possibly the most important but volatile thing you’re given. You can’t mind-over-matter it and no amount of eating clean can fix some problems, despite what you might think or what magazines and the media tell you. If you’re lucky, your health taking a downward turn will be a temporary thing and you can think about it differently from that point on, but if it’s permanent, you really miss how easy it was being healthy when it’s gone.

Why Chronic Illness & Parenthood are not the Same

I’m possibly going to make myself unpopular here so before I write any more, let me be clear that I have no issue with parents telling me or talking about how they’re tired or how draining/annoying having a baby is. It sounds hard work! And I care about other people and what’s going on with them. I rarely say ‘tired? You don’t know what tired is!‘ unless I’m joking with a close friend or you’ve really, really annoyed me. But parents and pregnant ladies do tend to retort with that phrase or similar when I’m telling them about my illness, which I find irritating, as I wrote in my post phrases I wish people wouldn’t say. Being ill and being pregnant or a parent are not the same and shouldn’t be compared, which is why I try to avoid doing so in everyday conversation, even though I will for the purposes of this post. Here’s why:

1) Becoming a parent is a choice. Even if the pregnancy is an ‘accident’, choices were and are still made throughout. Having an illness is not a choice.

2) The payback is worthwhile. You have a baby. I’m regularly told I don’t know ‘true love’ because I don’t have a child. If that’s the case, then the payback has to be worthwhile. I don’t get any joys in return for being chronically sick. 

3) Your tiredness won’t kill you. Mine could. (Fact). Pregnancy is not an illness either.

4) There are phases to parenthood. Lack of sleep and night feeds won’t last forever. My condition is permanent.

5) Night feeds and insomnia aren’t the same thing. Being able to sleep but having to get up to look after your child isn’t the same as being seriously tired but in too much pain or unable to sleep because of an illness. 

6) I can’t ask my family to share the nighttime stuff. I don’t have the option of a night away or someone coming over to look after my illness while I sleep if it all gets a bit much. I can ask people to help me out with physical tasks, sure, but they can’t take my illness off me for a while to give me a break. 

7) I don’t have hours of free time in the day either. I definitely don’t dispute the fact that there’s lots to do as a parent. I’m aware that parenthood brings extra tasks and challenges in the daytime which take their toll. But I don’t have hours of free time in the day either, the things I need to do for my illness fill it. 

8) Coffee and caffeine don’t help me feel less tired. And I’m not allowed to eat copious amounts of cake and chocolate either. 

9) Not being able to eat certain foods or drink alcohol because you’re pregnant or breast feeding isn’t a big deal. I can’t eat certain foods or drink alcohol for the rest of my life. 

10) There are millions of people worldwide who feel like you and who you can turn to for support and guidance in the middle of the night when it gets tough. The pool of people is a lot smaller for me. 

I’m pretty sure that any comments made are misdirected at me rather than pointed- they’re more likely an indication that things are hard, the person is feeling insecure, there’s a lot of frustration behind the scenes or they’re purely sleep deprived and it came out without thinking. I completely appreciate all of those things, but I also feel a lot of that too, and make a point of trying really hard not to project my issues onto other people unless we’re close enough friends that I know I can have a strop and they won’t mind. Or I’m really cross at what’s been said. And the nature of my endocrine condition can also make my hormones as volatile as a pregnant lady or woman who’s breast feeding- hormones are hard, but, again, I try really hard not to misdirect them (my close friends and family get those too- sorry!). Mine also have the added bonus of triggering my (non existent) fight or flight system which can end very badly. 

Like I said, I have absolutely no issue listening to and talking about the challenges parents face, because it sounds like hard work! I don’t actually think it’s possible to compare the two scenarios because they’re completely different. But I do feel irritated when I’m told that my chronic illness that I struggle with every day is nothing in comparison to the journey taken by parents. 

30 Foods Before 30: Autumn Update

I’ve been a bit slower eating my way through my 30 foods before 30 list in recent weeks, but here’s my Autumn update as to how I’ve got on so far:

1. Biscuits and gravy

2. Musakhan jajj

3. Freak shake I recently gave up most processed sugar to help manage my insulin resistance, and I think eating a freak shake might be a bit of a sugar overload now! But I’ll still try someone else’s at the very least. 

4. Wood ants I’m not looking forward to this one…

5. Lobster I had steak and lobster in a steak house.

img_6722

6. Khachapuri

7. Ceviche  Texture was weird, but the taste was good!

img_7188

8. Kleftico 

9. Nutella Krispy Kreme Many, many times…! So good!

IMG_6076

10. Raclette Will be eating more raclette this week too 🙂

IMG_6655

11. Afternoon tea While on holiday in Wales we had a lovely afternoon tea out.

img_6887

12. Tapas I’ve had Spanish and Italian Tapas since starting this list

img_6553-1

13. Alcoholic ice lollies 

14. ‘Proper’ loose leaf tea I’ve had this a couple of times, once at a friend’s house and also with afternoon tea

img_6884

15. Tartiflette I can’t believe I’ve not had this yet! We even have the cheese in the freezer ready to go!

16. Dosas

17. Tagine 

18. Real steak I had the steak and lobster which was ‘alright’, but also steak at another steak house, which was amazing!

IMG_6339

19. Gelato I’m happy to continue sampling flavours with this, despite it being ‘done’ 😉

img_6554

20. Pecan pie In an american smoke house- very, very good pie.

img_6488

21. Mississippi mud pie 

22. Ice cream float Also in the smoke house, had this a couple of times now.

img_6496

22. Hot dog This was ‘alright’. I wouldn’t pick it again, but I can say I ate it!

hot dog

23. Octopus Again, this was ‘alright’. We had it as part of the tapas meal. I’ve been told that it tastes better if made differently though.

IMG_6172

24. Thai food I’ve had a Thai Green Curry at a pub and Thai Red Curry Mussels but haven’t eaten in a Thai restaurant. So this is kind of done, but not quite.

img_6925

25. Chowder

26. Mussels We had these this week on our anniversary meal out for our second wedding anniversary. They were also unlimited so we could eat lots of flavours. Korma and red thai curry were the best.

IMG_7778.JPG

27. Wood fired pizza I’m surprised I’ve not eaten this yet!

28. Churros I’ve had these a few times now, still really good, especially these ones with nutella and dulce de leche

img_7190

29. Jerk chicken This was an amazing meal out for my husband’s birthday.

img_7291

30. Sweet potato fries I’m still pretty obsessed with these- every meal that comes with the option of chips, I switch them for sweet potato fries if I can!

So by my counting that’s 17 done, 1 nearly done and 13 not tried yet. And if you’re clever, you’ll have realised that that adds up to 31, not 30. It’s because in my original list I repeated 22 by accident, but when I realised, I decided to leave it in because I’m quite happy to sample one extra food! I think some of the red ones I might have to make at home from recipes, because I haven’t seen them on menus- if you have, let me know so I can hunt them down.

I’m quite impressed that I’ve eaten everything so far- there’s not been anything that I would say ruined the meal because I didn’t like it. But then again, I haven’t eaten wood ants yet!

Banner Image: Google Images

To The Night Nursing Staff

To The Night Nursing Staff,

I definitely would struggle with your job. I can barely walk around with sufficient light without falling over things because I’m so clumsy, let alone managing it with dim lighting. Nursing at night is clearly an art-form in itself. I’m pretty sure lots of you will know or appreciate what I’m explaining here already, but I was on a ward with some new nurses and Healthcare Assistants last week (I know because they told me so), and their Nurse in Charge had to remind them of a few things which make a big difference to patients’ care at night.

It can be really hard to sleep in hospital at night. It’s a strange and lonely place. You’re surrounded by lots of people but you feel really insignificant and small. For me, it’s because the routine of meals, snacks, drinks and obs slows down and I suddenly have hours of ‘quiet’ ahead of me and my brain wakes up and thinks a lot. Lots of the elderly get distressed at nighttime and call out, but if they’re not on your bay you have no idea if they’re about to take their last breath or they’re just sundowning and it’s normal for them. So my brain kicks into overdrive and thinks a lot about why I’m in hospital, if any of it’s my fault, panic about what the doctor might say in the morning, frustration because I’ve had a setback and fear because I’m worried about what I’m going to be like when I’m elderly, if I survive that long. On every admission I’ve had, I’ve been on a ward/bay with someone who has either died while I’ve been there, who is in the process of dying and receiving palliative care or someone who tells me they want to die because they’ve had enough. As practical as I am about being in hospitals, nighttime is when I lie and think about my future and my complex medical problems, which is a depressing prospect before I’ve hit my 30th birthday. I try really hard not to, because I know it doesn’t help, but a lot of the time my internal chemistry is out of whack because of my adrenal insufficiency, which is why I’m there in the first place, and it’s really hard.

So it’s already hard to sleep. I usually have an IV in, sometimes 2 if I’m lucky, and they’re usually in my arms because they’re hard to get into my hands. And they hurt if I pull on them, or they don’t work properly if I lie on them or bend my arms, which adds to difficulty sleeping. They usually need changing at some point in the nighttime, and obs will also happen at some point, which means you have to wake me up so you can do your job. The drugs I’m given and the nature of my condition at that point make me need the toilet regularly so I have to get up a lot (and take my IVs with me). All which make sleeping pretty stressful.

Then there’s the noises and activities of the ward. Call buttons ringing, beeping from monitored beds or pumps to signal something is wrong, sounds of people being ill or in pain, the cardiac arrest alarm going off all can’t be avoided. I’ve worked out what the different sounds are now, but it can be quite scary if we’re not familiar with them. You obviously know what they all mean, but we don’t necessarily, particularly if you can hear them coming from other bays- it adds to the already morbid commentary in our heads. The cardiac arrest one is particularly frightening, especially if it’s a ward where all the lights come on as well when it sounds. The best night nurse I had was one who purposefully came to check on me after a cardiac arrest because she recognised that I was the youngest patient, that I’d probably find it quite scary and I’d also probably be with it enough mentally to work out what was happening. She reassured me the patient was ok, which made a lot of difference even if it was only a small thing. Another nurse came to see me once and said that it would likely be a noisy night because there were lots of distressed elderly patients, so if I wanted to chat I could push my buzzer and she’d pop down. That meant a lot as well.

On emergency wards, I completely appreciate why nighttimes are still noisy and full of bustle. People come and go all the time, patients get admitted or moved to other wards, and it’s necessary for tasks to happen at specific times. But on other wards where things slow down at night, there are a few things which help us as patients to get a better night sleep, some which the Nurse in Charge highlighted last week:

  • Quiet footsteps. Footsteps are necessary, but stomping around the ward can be avoided. When I was a teacher, I purposefully didn’t wear heels on days I knew I had to invigilate exams, opting for soft soled shoes, so that I didn’t disturb the students’ thoughts with my clopping.
  • Not banging cupboards and doors. Speed is important but it doesn’t take much longer to close a cupboard rather than kicking it closed (excluding emergencies obviously).
  • Silencing unnecessary alarms. I’m not remotely qualified to say which alarms are necessary and which aren’t, but I do know that last week the Nurse in Charge had to keep reminding nurses to turn off unnecessary ones.
  • Wake us up before doing obs. One nurse was great and just said our names softly at the end of the bed before touching us, which allowed us 5 seconds of wake up time. Another nurse didn’t and just picked up my arm, which if you’re asleep can make you feel like you’re under attack even when you’re not! Then it takes a while to go back to sleep again because you’ve got adrenaline crashing about.
  • Avoiding turning all the lights on. To start off with, one nurse was turning all the ward lights on every time a patient needed anything, which obviously woke us all up. Every ward I’ve been on has had a patient light which could be used.
  • Not ignoring the elderly. The thing I hate the most about hospital at night is that there’s always an elderly patient who is shouting. They can’t help it, they’re scared and have no idea where they are. The problem is, there’s nothing ‘wrong’ with them necessarily, they’re just making a noise, so some nursing staff ignore them because they have other things to do. But it makes it difficult for other patients to sleep, so while there might not be anything that can be done for that patient, taking time to calm them down and reassure them actually helps the rest of us.
  • Talking quietly. I don’t actually mind nurses talking to patients, those conversations are necessary, I find it really frustrating when I can clearly hear nurses at the station talking about their weekends and social lives. Those conversations could be quieter!
  • Telling us what’s happening. I know ward routine now, but things are still slightly different in the mornings depending on what ward and hospital. I know roughly when breakfast is, what time we’ll get woken up, when meds rounds are and when ward round is, but it can be sometimes done really abruptly, which can make you feel really unsettled after a bad night’s sleep. Last week we were woken up at 6.30am by a healthcare turning on all the lights and bellowing at us ‘WHO ISN’T ABLE TO GET TO THE TOILET THEMSELVES?’ and then when we didn’t answer quickly enough ‘SO I ASSUME YOU CAN ALL GO TO THE TOILET THEN?’, which was wrong because I was the only mobile one on the bay. She then came back later and literally stuck her hand in a patient’s face and said ‘I’m not doing that’ (talk to the hand style) when she said she needed help washing. If she’d have come in and explained it was time to wake up and wash then it wouldn’t have taken her much longer, but we would have felt less like a herd of cattle being pushed from one activity to the next. The other thing to bear in mind, is that you know there’s been a change of shift and who’s responsible for what on the day staff, but we don’t unless you introduce yourselves to us.

Lots of night nursing staff have been great. I really like the ones who give off a calm aura even when all hell is breaking lose elsewhere, because they really get that it helps settle us down so we can sleep. It’s great to know that you can have a quick chat about your worries or concerns, even if you don’t take them up on it. And it reduces the stress of being in hospital if you know your nurses will do all they can to try to help you get a good night’s sleep.

A good night nurse is worth their weight in gold. I always feel reassured and a lot calmer if I know I have a good night nurse with me and my bay-mates overnight. Thank you to those who get that night nursing is an art, it really makes such a difference!

30 Before 30: Autumn Update

I haven’t done an update on my 30 things before 30 list for a while because it got tricky in completing something every week. Plus I’ve had a few health setbacks recently which have made it virtually impossible to do even the ‘easy’ things. I started the list over the Summer, and here’s my Autumn Update! The idea being, I will have hopefully managed most if not all of the things on the list by the time my birthday comes in May. I will definitely need some help with some of these, or if anyone wants to join in let me know 🙂

  1. Ride a Horse. I’ve not even seen a horse since starting my list!

  2. Go on a Spa Day. 

  3. Make a wearable piece of clothing. I’ve started this by starting to make a skirt. But it’s been put on hold while I recover because it takes too much concentration/effort to do.

IMG_66834. Volunteer for a charityI signed up to post cards/letters to a 5 year old child who spends a lot of time in hospital (postpals), one from each of the reindeer throughout the month of December. It’s not practical volunteering, but it’s still doing something for charity. 

5. Go to a Christmas Market that’s not just the one in Birmingham. I’m determined for this to happen!

6. Sell at a craft fair. 

7. Go see a musical and stay the night in London. 

8. Be a tourist in London. 

9. Go for a picnic in a park or a forest. Complete! Although I still want to go on a picnic in the forest.

img_6032

10. Go punting. 

11. Do yoga outside. I did some physio and Tai Chi outside. Yoga is definitely too ambitious at the moment. And it’s now cold outside!

12. Make brioche.

13. Sleep in a yurt. 

14. Learn to play Mvt II Sonata Pathetique (Beethoven) all the way through. I have one more page left to learn. Sadly it’s the hardest page!

IMG_6198

15. Make my own fruit juice for breakfast. Complete! I made peach and mango and apricot juice for breakfast. 

IMG_619516. Practise Spanish in an actual situation. I’ve done this a bit to a spanish waiter, but it would be good to have a conversation where my responses weren’t just ‘yes’ and ‘no’.

17. Go/watch ice skating. Ice skating won’t happen. But hopefully watching it could.

18. Read all of the Harry Potter books in order. Complete! And I even read Harry Potter and the Cursed Child as well. I can’t have read the last 2 books as much as the other ones because it took me a lot longer to read as I didn’t already know the story as well and kept forgetting bits and having to flick back. And the films, which I have watched a lot, miss out a lot of storylines I’ve discovered! Thank you to my friend who let me borrow his books 🙂

img_6837-1

19. Make mojito ice lollies. 

20. Learn how to crochet properly (even if it is bad). I still can’t do it… It’s proving hard.

21. Re-read a book in French. 

22. Host a raclette party. Complete! 

IMG_665523. Listen to BBC Proms concerts. I kind of tailed off listening to them as the Summer went on, but I still listened to lots of different performances. 

24. Record a song on GarageBand. Or Logic. 

25. Play Pokemon Go. I’m still playing, but I can tick it off the list.

26. Eat tapas. We had some very good tapas, on 2 occasions, Still open for trying more though!

IMG_6172

27. Visit a castle. We visited a lot when we went on holiday to Wales. This one is my favourite:

img_7063

28. Go to the seaside/beach and paddle. 

29. Play in a band rehearsal. I *kind of* did this when I went to my old concert band’s reunion event. As in, I played the triangle and the tambourine for a couple of pieces! But I’d still like to play more if I can (although looking unlikely)

30. Go to a Carol Service. This will hopefully happen, a friend was talking about this yesterday so fingers crossed!

My list is looking a bit like my RAG spreadsheets for school exam predicted grades (teacher in me), so I feel like I should add them up! I’ve completed 8, made a start towards 6 and haven’t done 16… There’s still a lot to be done!

I started the list when I was in a more of a healthy spell, so some of them might not get completed at all now as they’re possibly too ambitious. Others are weather dependent or seasonal. So overall, I’m quite impressed with myself! I think I’m going to focus on the Christmas ones and ones I can do at home, like reading a book in French, crochet and playing the piano. Hopefully I’ll be able to tick those off in my Winter update 🙂

Our 2 Year Wedding Anniversary

It’s our 2 year wedding anniversary today! If you’re expecting a soppy post about how I married my best friend and how I have the best husband ever etc, stop reading now. While those things might be true, I’m not that soppy a person and neither is he. Which is why we work well together!  

We got married in a Treehouse, which was lovely. We wanted to get married somewhere ‘different’ after we realised it would be virtually impossible to get married in a church (he’s part Jewish and I’m catholic), and didn’t want to have the pomp and circumstance that often comes with formal venues like hotels or country houses. The treehouse restaurant was quirky and different, which is why we picked it. And it had awesome food!

treehouse outside

Truth be told, I don’t remember most of the day, and it’s something I still feel upset about. Brides have a meltdown if they get spots on their wedding day, or a cold, or if the chair covers aren’t *perfect*. I was actually not that far off from dying that day, I just didn’t know it at the time. I know we had a lovely day and it was great having our friends and family there but I wish I could remember it. And that I hadn’t had to compromise on as much of the day as I did. 

IMG_4750

Our seating chart, designed by my husband!

What have I learnt in 2 years of marriage? Pass. I don’t remember much of that either. Maybe that’s part of a successful marriage! 😉 Seriously though:

  • Having good jobs and earning a good wage means you can do lots of extravagant things but it’s not the be all and end all. Some of our best holidays were camping and some of the best presents free. 
  •  A sense of humour gets you out of most problems.
  • If you don’t trust each other to know the little things, then you’re never going to cope when anything big comes along.
  • People who overshare about the ins and the outs of their marriage or who try to dictate what ‘should’ be happening in yours tend to be the most insecure or the ones having problems. Ignore them.
  • Share things out equally. Everything, including the chores nobody wants. Or just both deny all knowledge!
  •  And, what we learnt, a wedding is just a wedding, it’s the years that come afterwards which are important. Having said that, I’d still quite like to renew our vows or something at some point so that we can have a day we both remember and can look back on.

IMG_4746

My husband is pretty much my carer now. He does all the household jobs (although I did them all for the first few years we lived together, so it has balanced out!), makes all my meals for me… pretty much everything. I don’t have a job anymore so he is the only one earning. So you might be reading this thinking ‘isn’t he a wonderful man, staying with her despite her being sick‘, which is something I hear a lot. It drives me mad, and him too. I’m very grateful to my husband for what he does but people saying that to us implies that I bring nothing to our marriage whatsoever and that he’s only my husband still out of duty. I’ve been sick for the entire of our marriage, and before. It’s not like I trapped him!

I also get upset when we do things as a couple but people assume I’ve not had any input or my opinion isn’t valid. If people pointedly comment or only speak to him when asking questions (and this has got a lot worse since I started using a wheelchair when out), it can make me feel like I’m not worth acknowledging, that I haven’t tried to contribute, or that my opinion doesn’t count. Just because I need his help doesn’t mean I cease to exist- we’re a partnership. And that’s something that’s really important when you’re married. 

But I do bring qualities which make us work well together. I can find humour in most things, whereas he has a tendency to get really frustrated really quickly. Despite the fact that he’s good at fixing things (handy with me since I’m clumsy), he’s not always very good at problem solving or working out alternatives to problems. I’m not good at this anymore either, so we might grind to a halt soon! I’m pretty resilient and refuse to give up on anything whereas he used to be less so. We have a good balance. I already wrote a post last month about his qualities, but, to summarise, he’s generous, kind and can always make me laugh. 

Our 2 years of marriage has definitely not been the ‘wedded bliss’ advertised in all the wedding magazines, but I find it hard to believe that anyone actually achieves that- sadly, life doesn’t work like that. We’ve had some great moments, like our American road trip, but overall it’s been pretty uphill in terms of challenges thrown our way. You’re kidding yourself if you think that marriage is all about the Kodak moments people post on social media though (and a lot of those are staged anyway!). It’s easy to be together when things are going well, but a good marriage is one where you can still find funny things even when it’s really, really hard. 

My go to top tip if everything is a bit hard? Dominos pizza, chocolate, pjs and a film usually solves most things! 😉 

Photos taken by me.

My Hospital Bag

Pregnant ladies are told to make a hospital bag for when they go to hospital, because it’s guaranteed they’ll need it at some point. I decided a while ago that as I seem to be admitted to hospital around 2-3 times every 9 months for my adrenal insufficiency, I should probably also have a hospital bag. It’s upstairs under the bed ready for if I need to go, except I decided last week, in my wisdom, that I wasn’t sick enough to be kept in so didn’t bother taking it with me in the ambulance. The doctors had other ideas though and I should have obviously taken it with me in hindsight… 

 I clearly don’t have baby related things in mine, but I do have some things in it that make the experience so much better/easier! 

Medications. It sounds backwards to take your medications to hospital with you, but sometimes they can’t get hold of specific ones from pharmacy and ask you to use your own supply temporarily, or the pharmacist might want to check the dose, which is a lot easier if you have some with you. 

– Phone charger and phone. Obvious really. But having one with a long cable is good because then you don’t have to get out of bed and sit in your chair to charge your phone!

 – Headphones. There’s always an elderly lady who shouts ‘help me’ every 9 seconds all night. Always. It’s good to be able to block out the ward sounds as well. 

– 4G or TV downloads. Most wards have TV now but you have to pay for it so if you’re only kept in overnight it’s not always worth it. Netflix is always handy…

– A book. In case you run out of Gilmore girls on Netflix. Or, worse, there’s no signal! 

– spare underwear. Obvious really. 

– 2 pairs of  pyjamas. It gets really hot on wards and changing your pyjamas can make a lot of difference to how you feel mentally. Plus the NHS pink nighties are awful! 

– jogging bottoms and a tshirt. I’ve kind of gotten used to being sent for scans etc in my pyjamas which is when I used to get dressed, but it’s handy for when you’re discharged if it’s cold and you don’t want to leave hospital in your pyjamas. Once I got admitted wearing a suit dress and tights and funnily enough didn’t feel like fighting with tights and tailoring when I was let out…!

– socks and slippers. Wards get cleaned every day but I still don’t trust walking around bare foot. Plus it means you can leave the ward for scans/tests without worrying about shoes. 

– toiletries. Toothbrush, toothpaste, shampoo, shower gel, coniditioner, hair bobble, deodorant. The free ones you get from hotels are quite good for my hospital bag I’ve discovered! I also have wet wipes for days when I don’t want to shower/wash properly and hand cream for when I’m using the antibacterial gel all the time. You get given a towel and a small bar of soap, but that’s it. 

– oat bars/crisps.  If you’re admitted through a&e you tend to only get given biscuits and sandwiches if you miss a meal. Which are alright but it’s good to have something else just in case. Once you’re on a ward you get proper meals and snacks regularly. 

If I need to stay in for a few days then I might ask my husband to bring in some extra things but that’s the minimum of what I need. On one admission, the girl opposite insisted on wearing full make up every day, which I definitely can’t be bothered with when I’m feeling sick! If anyone has any extra suggestions of things to put in my bag, let me know 🙂 

Stress Dosing for Illness

It’s not an exact science. It’s a guessing game in fact. Imagine you’ve got a ‘guess how many sweets are in the jar’ game and you’re told you need to add sweets until it reaches a thousand. The sweets are different shapes and sizes so you can vaguely eyeball it and make a random guess, but it’s still a guess. It’s tempting to think ‘well it doesn’t matter if it’s not exactly a thousand, as long as it’s vaguely close’. 

Except it does matter, because a thousand is the number which definitely keeps you safe and out of adrenal crisis. So, with that in mind, you can take a gamble and not quite add enough sweets (steroids) to make a thousand and it might be ok or you can over compensate and add too many, but then not be able to get the jar lid shut properly and have to work out what to do with them. Oh and there’s a hole in the jar so some leak out periodically as well, just to add to the confusion. 

Managing cortisol levels is a bit like the guess how many sweets game anyway but it gets more complicated when ill:

– you might not have to stress dose for every illness. Some you might be fine without, my cold that I had 2 weeks ago, for example.

– you can’t predict how bad the illness might get so don’t know whether to overfill the jar ‘just in case’ or just add a few more in. 

– the sick day rules of stress dose for fever, vomiting and diarrhoea are a good place to start, but sometimes you have to stress dose for viruses which don’t have any of those.

– it depends on the other ‘stressful’ things going on at the same time.

– you might not even feel ill but be fighting something without realising it. 

Not knowing I’m ill is what catches me out. I’ve had 2 viral infections, a kidney infection and a UTI all land me in hospital on separate occasions but I’ve not realised I’ve been sick quick enough and ended up having to go to hospital. It’s really hard not to beat myself up about it because it seems so obvious afterwards, but considering the doctors in hospital take a bit of time to work it out with their lab work and tests, I try not to blame myself. I feel like what most people feel like when they have a virus or infection every day anyway, so it’s not like I feel any different. It’s also hard to work out what you should be doing when you just have a vague ‘feeling’ that you should be stress dosing but can’t pinpoint it. And statistically, according to charities, patients with my ‘brand’ of  secondary adrenal insufficiency are more likely to require hospital intervention for illness than pituitary causes of secondary AI, although it’s unclear why. In other words, medics don’t know an awful lot about us yet so can’t give us specific sick day rules. 

But something does change beforehand, I’ve noticed a slight pattern now. I’m ignoring the time I was admitted with one of the viral infections because the doctors thought I had Sepsis and it was a bit more complex leading up to that admission. But the other times, something prompted me to check my temperature and it’s always come back as between 35.5 and 35.8 in the days leading up to it (baseline temp for me is 36.3). So whatever it is telling me to check my temperature then got lulled into a false sense of security because you only should stress dose,in theory, when it goes to +1 your baseline (so 37.3 roughly for me). I always feel ‘weird’, I can’t explain it but I feel strange. Not anything bad but just a general feeling of murkyness. There’s also been this funny pull behind my eyes. 

Then, by the time my BP, heart rate and temperature do go high, it’s a bit late for me to do much about it myself. The time the doctors were querying sepsis, everything was normal all day and then my temperature went to 39 degrees, my BP to 195 systolic and my HR 175 in the space of about an hour. Which meant IV Hydrocortisone, fluids, paracetamol, antisickness meds, 4 rounds of antibiotics and getting put above everyone else except for someone in cardiac arrest. But I felt fine that day until I suddenly didn’t.

So maybe next time my temperature drops I’ll stress dose. It goes against the sick day rules but the only time my temperature seems to drop is right before I get sick. As patients, we’re conditioned to only take the steroids we need to survive and not add in extra, so we tend to fret about needing to stress dose and get steroid guilt. But, now there’s a bit of a pattern, I think I’d rather get it wrong and take too much than not take enough and end up in hospital. Everything is a learning curve! 

Photo: the Guardian

I used to feel guilty about calling 999

I used to feel guilty about calling 999. In fact, I still do a little bit. I used to worry that I wasn’t sick enough, that I was wasting people’s time and didn’t want to make a fuss for nothing. 

With asthma, it’s a bit clearer when to call 999. You can’t breathe and your inhaler isn’t helping so you go to a&e or ring an ambulance. But sometimes with adrenal insufficiency you just get a whole load of low cortisol symptoms at once and a feeling of ‘you’re in trouble and need help’. 

I said this earlier this year to a paramedic who treated me. He said it’s often the patients who actually need the ambulances that hold off calling whereas lots of people who don’t actually need an ambulance don’t think twice. He pointed out that the worst case scenario for me as a patient with adrenal insufficiency is that I could die if I got it wrong, put off ringing and didn’t get help quickly enough. But if it all turned out to be ok, nobody would mind because of the fact that I have a life-threatening, complex condition. He also said that patients like me tend to ‘put up with’ more than patients without conditions before ringing for help, because we’re so used to having to make decisions about our care ourselves that we forget it’s ok to ask for help if we’re worried or unsure. 

He told me about some of the call outs paramedics have to attend for silly reasons. A minor headache with no paracetamol taken. Ongoing back pain lasting for a year and with no worsening symptoms, they just decided that right then was the time to deal with it. Someone needing help with their TV remote. Sore feet from having been shopping all day. 

I don’t feel as bad for calling 999 now. I don’t misuse the emergency services and I only call if I’ve got to the end of what I can manage myself. What the paramedic told me last time definitely eased my mind when I needed to ring 999 this time though. 

Banner image: google image