We’re not indestructible/invincible

I think, as humans, we assume that things won’t happen to us and we’re indestructible. How often do you see people speeding or dangerously driving, seemingly not caring that they could crash? Or extreme sports where the slightest wrong move could result in you breaking your neck? Or even something as random and unlikely as getting in an unlicensed black cab or walking down a dark alley and meeting the only murderer for miles.

But things do happen. People do have car accidents or sporting accidents which cripple them. People do get murdered or kidnapped and the unlikely does happen. But until something happens specifically to us, it’s very easy to think ‘it won’t happen to me’ and not appreciate how fragile life actually is.

Having a life threatening, chronic illness kind of makes you face up to that a lot. Sometimes every day. For me, it was twice this week. The first time was when I broke my foot earlier this week, or rather, I found out I’d broken my foot. Let me just say straight out that adrenal insufficiency and Addison’s isn’t a terminal illness nor does it shorten your life in itself. However, side effects from medications you have to take and complications arising from having the illness tend to be the main cause of death. So breaking my foot reminded me of the fact that taking steroids every day has made me have the bones of a 70 year old in terms of brittle ness. And adrenal insufficiency means it takes longer for me to heal.

Having a broken foot isn’t a big deal. It’s the fact that I got a stress fracture without actually noticing and the fact that this is a big indicator of what’s likely going to happen more in the future. I always knew I was going to get a stress fracture at some point because of taking steroids, but like driving too fast and only really thinking about the consequences when you have an accident, I didn’t really think it would happen so soon until it did. So I had to face my lack of invincible-ness.

The second time was this weekend when I went to play with my niece and nephew who are 1 and 3 respectively. I like playing, but I tried to be sensible and avoid overdoing it. I got excited and involved and I still managed to overdo it. I wasn’t anywhere near adrenal crisis stage but I did have to updose a bit. Updosing isn’t a big deal if you’ve been dealing with AI for a while, you kind of just recognise what’s going on and do it. But when it’s for doing something as basic as playing with bricks on the floor or talking, which a 3 year old can literally do quite happily and without any fatigue, it makes you realise how volatile an illness you have or even how little energy you have healthy or otherwise in comparison to a toddler.

However, life is for living. I probably would have still broken my foot because I’m on steroids, regardless of if I’d been more careful (or if I’d known how I did it in the first place!). I don’t play with my niece and nephew every day, so it’s ok to have exceptions and push my limits a bit, as long as it’s safe. It’s finding a balance between feeling invincible and feeling paralysed by fear.

I think I’m finding a pretty good balance most of the time. I’ve faced my invincibility. But I look at some people and wish they were able to acknowledge that life is valuable and we’re not invincible so that they don’t take it so much for granted.

Advertisements

Stress fractures and steroids

There are many negative side effects from taking steroids. Most people won’t come across very many of them because they don’t have to take them for very long. But if you take them long-term, you come across them. It’s worth noting, though, that any medication has potential side effects and it’s up to you and your doctor to weigh up the pros and cons of taking any medication long-term. In most cases, the pros of the medication vastly outweigh any side effects. This is especially the case for me- if I don’t take steroids I die. No brainer really!

One of the side effects is brittle or weakened bones. A couple of years ago, one of my endos sent me for a DEXA scan, which measures the bone density in your spine, neck and hips (in my case). Then it tells you whether you have osteoporosis, osteopenia (pre- osteoporosis) or neither. Mine came back saying I have osteopenia, which means some of my bones were osteoporosis-like, some were ‘normal’, giving the overall diagnosis of osteopenia. It’s just a sample of all your bones though, so even if it came back normal for those ones, it could still mean my little finger might have osteoporosis, just they didn’t scan that. Or likewise, my spine could be terrible but all my other bones fine (although it’s less likely that way round).

I was already on calcium tablets twice a day and my steroid dose was as low as it could be without totally compromising my quality of life/putting me at risk of adrenal crisis. So nothing else could or needed to be done at that point.

Until the last few weeks. I’ve had a sore foot since easter and I’ve been hobbling around. I put it down to the fact that my steroids changed recently and I’ve been able to move around more easily than before because I’ve felt less like passing out all the time, so my feet weren’t used to it. And also I’m a lot heavier than before (another steroid side effect), which will obviously affect my joints when I do move. Except it’s been sore for a few weeks and I’m struggling with stairs. I’d been looking out for swelling and bruising and it hadn’t done either until this week. So I mentioned it to my chiropractor.

They decided to x-ray it because it’s a bit swollen, and when he whacked a tuning fork and held it against my foot, the vibrations made it hurt more. The x-ray showed a historic fracture in my little toe that healed badly (which could have been from when I was a lot younger because I don’t remember it) and a newer stress fracture in the toe next to it.

I’m not overly surprised. I’d said to my husband about steroids and stress fractures at the weekend. It’s annoying though because there isn’t an awful lot you can do for stress fractures besides not walk on it, and I really don’t walk very far as it is! If it’s not less painful/allowing me to walk around easier within the month, they’ll refer me to the fracture clinic. So rest it is (because I don’t do enough of that already!)

Ironically, you’re supposed to increase your steroids when you break something or injure yourself, because your body needs the extra cortisol to heal itself/deal with the pain/deal with any shock. Judging by the fact that I otherwise feel ok, and haven’t had any more low cortisol symptoms than normal, I’m going to play it by ear and leave my dose as it is for now. If the pain bothers me even when I’m not putting weight through it, I might updose.

Stress fractures are one of the perils of steroids. It’s annoying, and I don’t remember doing anything to cause it, so it’s just one of those things. In my mind, I’d rather have a sore foot than be bedridden because my steroid dose is so low I can’t function. So for now I’m grateful it’s not something like a spinal stress fracture and will have to put up with people waiting on me and my foot I guess 😉

I’m Tired.

A lot of people assume that when you don’t work because of ill health, it’s a case of stay at home and look after yourself. The reality is, having a chronic illness takes up all of your time in ways that aren’t just revolving around your symptoms.

Today I feel particularly tired and worn down by it all. It’s not a positive post but it isn’t actually helpful to be positive all the time. It’s ok to have feelings about things, and people who ‘never complain’ about being ill are either saints of the winged and halo variety, or lying- if people complain when they have a cold, I’m going to complain sometimes about a worse, more debilitating thing when I have a bad day.

The problem with being sick is you constantly feel like you should be doing something to better your health. That if something goes wrong, you should have done something differently. It’s actually really hard to just accept that sometimes you have grumpy days just like any normal person would, because you feel like you’re under constant scrutiny, whether it be from doing something your doctor/nurse/therapist tells you to; government agencies assessing you; your family; friends or random people on the street who like to chip in about whether or not you look like you need a disabled badge (they’re examples, I’m not suggesting I have unsupportive family or friends but other people do).

Things which are wearing me down today:

  • I really want to eat chocolate. Or pizza. Or just junk. But I can’t because of my low carb diet. I’m annoyed I don’t have a choice over what I eat like everyone else does.
  • Sport or music would make me feel better. It would also probably kill me. It’s a choice that’s been taken away from me, so I’m annoyed about my body failing me in that respect.
  • I’ve had to change my meds around for the infection. I’m so fed up of steroid maths.
  • I’m working out a new baseline (good thing overall) but I really wish I could skip the feeling crap while I work it out stage. Which could take months.
  • Every day I have to do physio and graded exercise therapy. Good thing overall. But I really can’t be bothered because sometimes it doesn’t feel like it makes a difference.
  • Despite eating according to my plan and doing my exercises, it’s slow losing weight. Actually being able to lose weight at all is new and a good thing, but it’s just annoying me today.
  • I’m tired of arguing with the DWP to try to get benefit paid to me.
  • I don’t have a job so doing things which cost money (ie having some kind of life) is very limited. A holiday would be nice.
  • I quite miss having a job
  • But even if we had money, flying and travelling makes me ill.
  • I resent the fact I have to choose between washing or doing something I like to do because I can’t do both.
  • I’d quite like to be able to go for a walk or get in my car and drive somewhere myself. But I can’t leave the house by myself.
  • It would be good to have clothes which fit
  • I hate that my bedtime is 9pm.
  • I hate having to be ‘sensible’ or ‘ruin’ things because I can’t manage them. Or I have to weigh up pushing myself and risking hospital, or going home early.
  • I like seeing other people’s achievements and life milestones but it equally highlights how few I’ve had in the last few years.
  • I’m bored of logging symptoms and pills and working out how to phase on or off different meds and then dealing with the side effects.
  • A full night’s sleep would be great.
  • I really dislike being rare, medical mystery, unusual… although I’d still feel a lot of the things above with another illness, it would be great to be able to go to an appointment where I don’t have to explain what my illness is and where someone tells me how to manage it, rather than shrugging and asking me what to do. I think a lot of people underestimate how fatiguing mentally that is.
  • I can’t remember the last time I cared about my appearance. I’m too bloody tired to think about it half the time.
  • I’m tired of factoring in how to manage things like when I can go upstairs, or sit up rather than lying down or if i need a nap.

Most people would ‘Netflix and chill’ on a grumpy day, but that’s pretty much my daily life anyway! So a cup of tea and some crochet will have to suffice. Tomorrow is a new day so I’ll probably feel differently. But for now it’s ok to have a grumpy day about it all, in the same way other people have grumpy days too. 🙂

Diabetes Insipidus & Toilet Card

More toilet chat, but, like before, I kind of wish I’d had a blog to read about it rather than spending years putting up with it!

Something I learnt this week is that if you have diabetes insipidus, you’re also more likely to get UTIs. Which would make sense. DI is nothing to do with the other diabetes that everyone has heard of (type 1 or type 2), it’s to do with the way your pituitary releases a hormone to your kidneys telling them how to process water.

Part of the treatment for DI is to take a spray which stops you from weeing as much. Which, when you feel like you’ve got the bladder of a 90 year old, is actually pretty amazing! It means I can actually get a full hour of sleep, providing the rest of my body is cooperating, rather than getting up every 20 minutes for the toilet.

Anyway, this week I got a very small UTI. No big deal. Just flush it out with lots of water, right? Cranberry juice? Ride it out and it’ll sort itself out? It got a bit amusing and complicated.

– I can’t just flush it out with lots of water because my body doesn’t process that well because of DI. So I’d end up losing a lot of electrolytes which would trigger my adrenal insufficiency.

– my AI got triggered anyway because I had a bit of an infection and it kind of went ‘hell no, can’t be bothered with that this week’. Except one of the things I get with low cortisol is I need the toilet even more regularly than I did before (if that’s even possible) which aggravated the UTI more. So after a bit of asking around on some endocrine groups, being aggressive with the steroids earlier on seemed like the best option, rather than seeing if it’d go away.

-I couldn’t drink cranberry juice in large quantities because it would make my blood sugar weird and make my reactive hypoglycaemia bad.

– it’s not bad enough to need antibiotics and if I went to my GP with it they’d ask me what I think should happen or panic and send me up to the hospital for the day. Where they’d do all the normal bloods, tell me I have a slight UTI and that I need to stress dose, which I already know and am doing.

So I’m just playing it by ear and seeing what happens. I did, however, get the chance to use my toilet card this week.

Because it’s dangerous to not go to the toilet or drink when you need to with DI, you can get a toilet card which explains what DI is and asks if you can use a toilet not usually available to the public. It also says how it’s not contagious, which is both amusing and slightly sad that the creators of the card feel the need to write that on there! I got mine for free from the pituitary foundation. Lots of other conditions have them too eg Crohn’s disease.

I got a bit stuck when out so I went into the nearest building which was the Job Centre. The security guard looked a bit confused but directed me to another member of staff who had obviously seen the card before and she got someone to escort me to the staff section. Someone had to wait outside the door because of security reasons I imagine, and also because I needed swiping through the doors. Luckily my body was partly on my side and I didn’t end up stuck in there for half an hour like I have been in the past with some poor employee waiting for me outside!

I hadn’t used my card before, mostly because I don’t tend to go to places where there isn’t a toilet (or go out much full stop). But it was a lot more straight forward than I thought it was going to be. It just gives that extra reassurance that it’s there if I need it more than anything. Another thing worth considering if you have DI or AI is a radar key. It’s a key which works in most locked toilets in the uk which you might find in car parks, shopping centres, cafes, pubs… they cost £3 each and I got mine by googling ‘radar key’ and my local council’s name and going to the central library. Anyone can buy one, you don’t need to show anything or prove anything, just ask for one.

Stress dosing and dexamethasone

I’ve written about stress dosing with hydrocortisone before, and I took hydrocortisone as my cortisol replacement/steroid for 3 years so got pretty used to it. In January, my endo changed me to dexamethasone, which has meant learning how to stress dose again.

I think some doctors think it’s black and white for stress dosing. If you have a temperature or are being sick or are injured (plus a few more), stress dose. For everything else, don’t. Wellllll it’s not that simple. Sometimes you do have to stress dose for viruses and colds and other random things. The problem is, you don’t necessarily know you’re ill until you’re ill and then you have to act pretty sharpish. I don’t always get a ‘coming down with something’ feeling because my day to day symptoms pretty much make me feel like I’ve permanently got a virus.

This is where HC is good for stress dosing. HC gave me a headache for the amount of maths involved in stress dosing and tapering back to baseline (3-4 daily doses plus more at 4am, all different amounts), but if I was feeling ill, I could take some HC and know if I was coping or not within 20 minutes. With dex, that doesn’t happen.

It’s to do with the way the medication is released, or the half life. HC is quick acting, so you take it and it gets in your body quickly but it also peaks and wears off relatively quickly (4-6 hours). That’s why taking a huge dose of HC in one go doesn’t mean it’ll last any longer in your system or do you any better than taking a smaller dose- frequency is the key. Dex is long acting. I take it once in the morning and I still have some kicking around in my blood the next morning before I take my next dose. But it takes a while to start acting. So if I take my morning dose and then start being sick at noon, it’s no good doubling my dex because I’ll have become critically ill before it starts working. Stress dosing for dex is great if you already know you’re ill when you go to take your normal dose. But for anything else, you need to fall back on HC.

Which is where the maths gets hard, but hopefully it’s only hard for one day. I don’t have much experience stress dosing with dex, but this is what I did the last time I was ill. I took my normal dose of dex in the morning and then decided by lunchtime I wasn’t right and needed some extra. My daily dose of dex equates to about 18mg of HC and my old HC dose used to be 27.5mg total per day, which would make my stress dose 55mg HC per day. So as long as my dex equivalent and my added in HC didn’t exceed that in 24 hours, I’d still be ok. Basically what I did was revert to my old HC schedule as well until the next day when I could just double my dex.

Except you’re still supposed to do the ‘more at 4’ protocol when you have a temperature, which I got overnight. The idea being, you take double what your morning dose of HC would be at 4am and then your doubled normal morning dose again at 8am. I asked around as to whether I should do this with dex and the answer wasn’t overly sure but I should probably do it with HC and take my doubled dex as normal. My normal 8am HC dose used to be 15mg, which I doubled to 30mg for 4am and then I had my doubled dex dose at 8am like normal.

Now, I might not have been as sick as I have been in the past, but I seemed to get over it a lot quicker, and, for the first time since diagnosis, I didn’t end up in hospital. So it must have worked! I also didn’t need to stress dose for as long and tapering was so much easier than on HC! A HC taper used to take me 2.5 weeks minimum and was horrendous. My dex taper lasted 5 days and was pretty easy. It also was far less maths- with HC you have to take 5mg out of different doses at three different times every other day for 2 weeks and make sure they all balance, but with dex it’s 3 stages and that’s it.

Overall, I much preferred stress dosing with dex. However there are some downsides. It’s good to be able to take your stress dose just once in the morning and then go back to sleeping (dying) all day, but if you take too much which you don’t need, it’s stuck in your system for an awful long time (and probably stops you sleeping). Whereas with HC, it leaves your body within 6 hours so you can just go ‘oops’ and make an adjustment for the next dose. On the other hand, if you start being sick 30 minutes after your HC then you know you’ve absorbed it, but with dex it’s much longer to absorb and you don’t really know how much of it has absorbed or been released. The biggest downside I’ve found it not many people take dex so I’ve kind of had to make it up. My endo seems to think I’m doing ok though!

In some ways, I liked the flexibility of HC in other ways I prefer the simplicity of dex. I’m still learning though!

Temperature Scarf: March

March was a bit crazy weather wise! We had snow storms or ‘beast from the east’ but we also had some pretty mild temperatures!

My temperature scarf is a woolly record of the daily top temperatures for Coventry, U.K., based on this colour scheme:

I said in my February post that it is not my neatest crochet work, mostly because I do it every morning in the time it takes my tablets to start working, so I’m not with it!

I went back to single crochet for March. Here’s what it looked like:

On the days where there’s white and purple or white and blue it’s because it was both snowy and that temperature! Although, if I’m being honest, it’s mostly because I wanted to use purple but wouldn’t be able to if I just used plain white to represent snow… Then we had a few days of the same blues before more snow! Some milder temperatures and then it got cold again. It did try to snow, but only flakes, none settles on the ground.

Here’s what it looks like in comparison to January and February:

A lot more varied in colour than the other 3 months! Hopefully April should bring some warmer temperatures, meaning I can get the next colour up out!

March’s Makes

March was a bit of a weird month. I was looking back through my photos and it doesn’t look like I’ve done as much crocheting as in previous months. I spent about 2-3 weeks asleep and not feeling great which seriously hampered my crocheting speed. But I actually had the most successful week in terms of sales in March as well! Here’s what I made:

The shamrock pins I made last month were selling pretty well so I added some key rings to my shop, which also did well.

I had a custom order for a Fox. This was pretty interesting to make because I was given a picture to work off and I didn’t have a pattern. Usually when I make animals, I have free rein so can imagine the design myself, so it was a (good) challenge to work in a slightly different way. I was happy with the result 🙂

I was asked to make an otter for a birthday present. It was a bit tricky to work out how he should be positioned because otters spend a lot of time swimming! I went for he swimming on his back look in the end.

One of my night time blankets was this heart stitch baby blanket. I learnt heart stitch for Valentine’s Day and decided it was cute and would look good as a baby blanket.

I started crocheting clothes for preemie babies. You can read why I started doing this in this blog post. Here are a few more:

I also made some preemie and micro preemie hats and booties:

All of my preemie baby items will have a contribution made to Bliss or The Sick Children’s Trust as part of the listing.

Another charity thing I did was make some boobs for an infant feeding team.

Bit of a random make, but they help new mums out.

I learnt tulip stitch for Mother’s Day originally and then decided to design my own baby blanket using it and block colours. I also published the pattern on Ravelry (crochet and knitting pattern site) last week and it’s already had 50 downloads.

Mother’s Day, Spring and Easter mean I’ve sold a fair few daffodil badges and bunches of daffodils.

And also a few creme egg chick covers, although not as many as I thought I would!

I lost my coin purse of about 10 years and was pretty annoyed with myself. Until I realise I could take the opportunity to design my own!

I put that pattern on ravelry too. And that’s what I made in March! In April, I plan to think about some more accessories and gift ideas, because even though I love sunshine, there is absolutely no need for handmade, crocheted warm weather clothes!

How do you measure stress?

I was talking to a friend today and she asked ‘how do you know when to stress dose for stress?’ Good question. And I probably didn’t answer it very well at the time but I’ve been thinking about it.

Stress dosing and sick day rules are a bit vague anyway, even for the physical stuff, let lone the emotional and mental stuff. In fact, if you follow the ‘rules’ strictly, you shouldn’t actually stress dose for anything emotional except for bereavement.

Ha. Very funny. If someone gets stressed, whether it be because your kids won’t shut up arguing in the back of he car, or someone steals your parking space, or because you got an email that riled you, you have a subconscious stress response- you can’t help it. You can control your responses after that by processing your thoughts and feelings, but you can’t easily stop that initial surge of the stress hormone, cortisol.

So why do writers of the sick day rules assume that people who have adrenal insufficiency would be any different? Why wouldn’t we have an initial surge? Except ours is broken, so we start to feel sick and dizzy and fatigued instead. If we don’t replace the cortisol our body has used up, it all starts to cumulatively add up.

Trouble is, there’s no way of checking how much cortisol is in your blood so dosing your steroids (cortisol replacement) is one big guessing game anyway. Never mind when you’re trying to work out how much cortisol your neighbour’s dog irritating you with their barking has used up. And it sometimes barks more than on other days, so it pisses you off more some days than others. Or sometimes you’re not as bothered by it. How do you dose for that? And, doctors would argue should you be dosing for that?

So to answer my friend’s question, it depends. It depends on how spritely I feel that day. It depends whether something is an unexpected stress or not eg was I expecting stressful post in the mail or did it come out of the blue? It depends on what other mental and emotional stresses I’ve had that day. Or how worn out I am by physical stress. So it’s trial and error mainly. But here are some general rules I apply:

  • Anything which makes me have some kind of surge of adrenaline needs a small bump of about 2.5mg usually. It’s ok when you’ve got adrenaline, it’s when it wears out that the problems start. More if there’s more adrenaline.
  • If something makes me cry for longer than a few minutes, 2.5mg. If there’s snot involved, 5mg. Pacing around and not very comprehensible at all (meltdown/crazy lady), 10mg.
  • If you’d make a normal person sit down and look after themselves= stress dose
  • Arguments, confrontations, subjects that make me irate or have particularly strong feelings. My dad and I no longer speak about Brexit, for example.
  • General things that people might start a conversation with ‘you’ll never guess what just happened…’ and require some kind of sympathy for I’d probably think about a small bump.
  • Nightmares is one I used to frequently have to bump dose for- my body can’t tell the difference between real and not real!
  • If grey’s anatomy were to kill off Derek Shepherd again…! I’m so glad that was pre diagnosis!!

It’s hard and it’s different for everyone. I don’t stress dose for some things other people do and vice versa. You kind of learn what you need. It’s always better to be overdosed temporarily (temporarily is important) than underdosed- you might die if you’re low on cortisol but you won’t if you’re over.

Of course this illness is fun, so you also have to stress dose for happy things that ‘stress’ your system.

  • Seeing my niece and nephew. It’s exciting!
  • Going out for the day/weekend/seeing people. I get too excited chatting and laughing sometimes
  • When my friends tell me they’re pregnant or other equally exciting news
  • When I do something I’ve been looking forward to

So to answer my friend’s question, yeah in theory there is a point stress wise your body should get to in order for you to work out what dose to give it or whether you need to stress dose. But there are so many variables involved and guesswork that you basically learn how to do it on gut instinct.

Good question though 😉

Crocheting Baby Clothes for Preemies & Tiny Babies

**links if you’d like to make a donation or buy some of my preemie baby clothes are at the bottom of this blog**

I recently started making clothes for premature babies and selling them in my Etsy shop to raise money for charity. I was a premature baby in the 1980s (5 weeks early) and my niece was born last year prematurely at 29 weeks. Here she is:

For babies born anything more than a couple of weeks before their due date, they tend to come unexpectedly. Obviously you know you will have a baby at some point. But no one seriously thinks that they’ll have a baby at just over half way through their pregnancy. And even if you’ve been admitted to hospital for a couple of days before a doctor decides to induce or do a C-section, you’re still not ready. So you’re not necessarily prepared either mentally and practically.

All of the things you’ve read or learnt about in pregnancy classes don’t happen. You’re told that the bit immediately after giving birth is important bonding time for you and your baby. The reality is, you and/or your baby are seriously sick, so you’re lucky if you get to see them never mind get any skin to skin before they’re whisked away, probably intubated and plugged into a bunch of wires and then taken to the NICU where they’re put in a glass box (incubator). Already the mum is probably feeling like she’s failed as a parent because she’s not with her newborn and isn’t protecting them against the world.

Mum will probably have to wait to see their baby. Either because she’s sick herself, or infection control or because she can’t walk. Dad will be feeling torn between making sure their baby is ok and making sure his partner is ok, even though he can’t actually do anything for either. And if the couple have other children, it gets more complicated. Some NICUs don’t let young children on their wards. If you thought childcare while you’re in hospital giving birth to a full term baby is complicated, think about the complexities when the baby is early and you can’t just take the older kids with you.

So you can see within minutes of what’s supposed to be the happiest day of most people’s lives, it actually becomes the most stressful and terrifying. And baby classes don’t prepare you for medical emergencies and early babies. The nursing staff might be great but it still doesn’t take away from the fact that you’ve just given birth, your hormones are crazy and confused because you can’t pick up your baby, you’re having to express breast milk to help your baby and feeding it down a tube but your body isn’t cooperating because it’s confused, you’ve barely touched your baby and you can’t give them much comfort through the hand holes in the incubator and most NICUs don’t really have windows so you have no idea if the clock on the wall is saying 3am or 3pm anymore.

Knowing all of this, there are charities which help parents who have premature babies and there are volunteers who make clothes and other comfort items for premature babies. For example, bonding squares are given to mums to put in their bra or near their skin and then later placed in the incubator so the baby can smell their mum. My niece has a purple bonding square here:

Or octopuses give the babies the same tactile feeling of the umbilical cord so they don’t pull on their many wires instead.

However, as one mum wrote on something I read recently ‘you can’t do anything for your baby, and you’re given a tiny wool square which is supposed to help you and your baby bond. I don’t want to sound ungrateful to the NICU staff or the volunteers who made them, but it isn’t the same.’ Some hospitals try to actively involve parents in their baby’s care, some don’t or the baby isn’t well enough. The hardest thing most parents find is leaving their baby for the first time after their birth usually while they go out for the evening. Imagine having to leave your baby every night, not really knowing if they’ll still be alive in the morning and hoping you don’t get a phone call.

How does all this fit into me making clothes for premature babies? Well, my point is you don’t have many choices as a parent about how you raise and look after your child at this stage. You can’t necessarily even decide when to change their nappy or do basic things parents do. But your baby might be able to wear clothes. And they will definitely need to be wearing hats. The whole goal of this experience is that baby will come home, albeit a lot smaller than what was expected, but home even so. So when the Mum or Dad is walking out of hospital at night, minus baby, trying to keep it together, if it were me, I’d be thinking of those things and wanting to have some control over something, like choosing my baby’s clothes.

There are lots of volunteers who make premature baby clothes, but, and I mean this with respect, a lot of those volunteers tend to make outdated or old fashioned clothes. Some people might say ‘well their baby is alive, they should be grateful’ and I imagine they are grateful! But there’s new evidence that says lots of NICU parents experience some form of PTSD (as do the babies) and if the only thing they have to focus on is ‘my baby is alive, I should be grateful’, that’s not going to help.

I found it so hard to buy clothes for my niece even when she was discharged from the hospital because she was still tiny. And, providing the baby is allowed to wear clothes and it doesn’t interfere with their care (eg infection risk/monitor placement), why shouldn’t parents of premature babies be able to choose ‘cute’, modern clothes in the same way other new parents can? That’s what I tried to think about when designing my premature baby clothes, as well as the practicalities. Here are some I’ve made so far:

For donations from any sales I make, I’ve chosen the charities Bliss, because they provide general support to parents and premature babies, and The Sick Children’s Trust because they helped provide accommodation for my sister in law and brother while my niece was in hospital. This meant they could all stay, my nephew included, a few minutes away from her rather than an hour where they lived, and it kept them together as a family.

My niece is doing really well now. She still has occasional check ups for her heart condition but considering we were told she wasn’t going to survive at one point, she’s doing amazingly 🙂 . Here she is now, just before her first birthday:

Visit my OkThenWhatsNextCraft Etsy shop

V isit Paypal to make a one off contribution to my PayPal and I’ll make a donation on your behalf to Bliss or The Sick Children’s Trust

Photos shared with permission 🙂

I haven’t had coke in over a week

By Coke, I mean of the Coca Cola (zero) variety. But I bet I caught your attention 😉

This is actually a *huge* achievement. One of my horrendous (as in, I couldn’t ignore this one) daily low cortisol symptoms was feeling incredibly sick and getting a stomach ache. It’s a stomach ache that comes in waves every few minutes, makes you feel like you’re going to be sick, makes you sweat a lot and you kind of feel like blacking out so you don’t have to deal with it anymore. I could ‘fix’ the stomach ache by either swallowing lots of hydrocortisone, which is frowned upon, or by drinking copious amounts of coke.

Of the two, drinking Coke Zero caused me fewer problems than having varying amounts of hydrocortisone in my system- if I was never on my baseline because I was dodging stomach ache, my body would permanently be confused and would therefore always feel like it was low on cortisol at some point in the day. Meaning I’d have to take more hydrocortisone to counteract the stomach ache, and the cycle starts again. Drinking Coke was less ‘bad’ because it sorted out my stomach and pain and didn’t have sugar in it.

Except it has a ton of other crap in it, and while sweeteners and artificial additives are supposed to be ok because they don’t cause blood sugar to spike (in the same way) and have zero calories, people used to think smoking cigarettes was ok too. And look how that’s turned out.

A nurse friend told me a while ago that Coke Zero/Diet Coke was bad for insulin production because it triggers your body into thinking it’s getting food, but it doesn’t actually get anything from it because it’s all fake stuff. I listened and agreed with her at the time but also said that I didn’t know what else to do because if I didn’t stop my stomach ache, it usually meant a trip to hospital. She agreed it was tricky, but I stored away the information because she’d basically confirmed my suspicions about diet and zero drinks being bad for bodies.

Now my steroids have switched from hydrocortisone to dexamethasone, I don’t get stomach ache every day as long as I pace myself. I do feel more sick than I did before, but while unpleasant, it doesn’t put me in hospital like the stomach ache would. I still get stomach ache but it’s now once or twice a week rather than once or twice a day. I saw this as my chance to get off Coke!

I played around with some other drinks. I bought some ginger teas and sparkling mineral water and had a look at squashes and cordials, but they all either had lots of sugar or lots of additives. The problem with hot ginger tea is I can’t stomach it when I feel ill. But a ginger teabag in a jug of sparkling water for an hour seems to be working really well! And there are no additives or sugars to worry about.

I’m very much a person who if I put my mind to it, can just give up things. I don’t need a ‘this is my last…’ or significant starting date. So a couple of weeks ago, I decided to stop drinking Coke and switch to ginger sparkling tea mix. And it seems to be working, even today when I had a really bad stomach ache. I just need to make sure there’s always some ready in the fridge and I’ve got a small plastic bottle I take out with me. It does look like I’m drinking urine, but whatever!

I’m pretty proud I’ve managed to stop drinking Coke because I knew it wasn’t good for me, but equally neither was high doses of steroids and hospital. I was surprised that I did have a couple of days of withdrawal symptoms from it, which kind of proves my theory that there was definitely something in it causing my body problems if I felt withdrawn from stopping drinking it! But now I feel as normal as I get.