Fortunately/unfortunately: building an extension

Life has been a bit like the game “fortunately, unfortunately” the last week. It kind of went like this:

Fortunately: you got planning permission for your extension

Unfortunately: you have to wait for building regs to be signed off. There’s a backlog in that department

Fortunately: your fractured pelvis is getting better pain wise and you can move around a bit more easily

Unfortunately: there was a massive crack in both feet and now you can barely stand on them and can’t walk

Fortunately: your GP is amazing and got you sorted with pain relief (yay for Oramorph) and a fracture clinic appointment

Unfortunately: you had to spend hours in a&e with people being moomins and making you stand up for ages while on crutches first.

Fortunately: fracture clinic says you haven’t got any new fractures in your feet where the pain is. Ie none since last week.

Unfortunately: they don’t know what’s causing the pain. Oh and there’s 2 more (within the last few months) fractures in your left foot that you didn’t know about (6 now in total). But don’t worry, they’re not that bad and they’re healing(!)

Fortunately: you got to plan your adapted/disabled friendly kitchen with your architect. Very exciting

Fortunately: building regs got signed off really quickly so you’re good to go!

Wow, 2 fortunately-s in a row?! Hooray!

I’m not naive enough to think that building an extension is going to be easy and stress free. But it’s still exciting. Particularly as I get to design it in a way that’s practical for me. Here’s how the process has gone so far.

(Bear in mind we live rurally, so a lot of stuff is a case of “oh yeah, we know a builder” rather than having to do a lot of research or get lots of quotes. It’s probably a lot more faffy elsewhere!)

Fortunately (there it is again!), for an extension like the one we’re planning, we didn’t really need to have planning permission because the extension walls will be far enough away from both the “highway” (single lane track) and our neighbour’s boundary. It wouldn’t impact negatively on drains, which is the other aspect we had to think about. Unfortunately (pah) part of the build involves putting in a ramp for level/wheelchair access and the height it would need to be for that was 10cm over what you can do before planning permission is needed. So we had to go through the planning permission route to get it approved to be higher. This means forms, submitting to scale plans, providing notice to the area/neighbours, giving them a time frame to respond in if they have any objections, before it gets taken to a planning committee who say yes or no. Fortunately, we’d already hired/knew an architect from the get go and had sat down with him a few times to make changes to layouts, so our plans were ready to send off. The bit that took the longest was waiting the required time for people to object, which is a set amount of days. Then it turned out they’d forgot to inform one of our neighbours, so we had to wait another couple of weeks so they had the full time to object to anything too. Which they didn’t.

With no objections to the plans, it went to planning committee who signed it off too, with the proviso that the window in my kitchen bit is high and frosted/obscured so that it doesn’t overlook our neighbours. Which sounds a bit like someone putting a clause in “just because”. And it doesn’t have an impact on me and it’s easy to do.

Next, we got our builder to come over to make sure that what we’d planned with the architect would actually work construction wise. I’d said I wanted a pitched roof because I’d been in far too many schools where flat roofs had leaked/exploded everywhere. But roofs are apparently a lot better than they used to be and practically and aesthetically it would be cheaper and better to have a flat roof.

The second thing he flagged was we’d have to move the electric box for the existing house because it needed to be on an external wall and it currently is right where we’d be extending. To do this, we had to ring our energy provider and book them to do the job. We’ll see what happens with that when they come to do it .

Building work generates a lot of waste and we’d need to hire a skip. But we have a narrow single track road which would struggle getting a skip down, meaning we have to find somewhere nearby we can put it while work is going on. We haven’t solved this yet!

Finally, our architect had to submit our plans to the building regulations people (not the actual term- you can see how much I was paying attention to the boring form filling bit!). There’s a backlog so we weren’t holding out much hope that it’d be done soon, but it was surprisingly quick!

Now that we’ve got that sorted, I can start to get a bit excited. I didn’t want to before all the paperwork was done in case it got rejected. Aside from what’s happening globally with covid, brexit and putin, which could make importing materials expensive and we’d have to stop/there could be supply issues and we’d have to delay, it’s *touch wood* going ahead! And I can’t do anything about pandemics and politicians!

I’ve already got qualifications in medicine, law, forensics and art/antique appraising from watching Netflix programmes, so I’m going to add interior designer to the list too! Next post will be about designing my kitchen!

Neutering our puppy (medical dog) part 1

Like everything else to do with having a puppy, we didn’t have a clue as to what was the “right” thing to do about neutering ours to start off with. It used to be the case that every male puppy got neutered sometime between 6 and 9 months, just because that’s what happened. The reasons for doing it are to stop them from breeding and because it reduces testosterone which is what makes them chase after female dogs and/or hump things a lot. In some dogs, it makes them less aggressive. We asked the vet and they said it was a choice thing, but the only time they really had an opinion either way was if the dog was already overly anxious (wouldn’t recommend doing it) or overly aggressive (definitely do it). Hamish, overall, is a good dog. He’s not aggressive, doesn’t really bark or growl,except for at stupid things like leaves(!) and, besides his puppy moments which all dogs have, he usually does what he’s told. He’s really perceptive and you can see he tries really hard to not be as excitable around me or kids, because he knows we’re more vulnerable. Online information was a bit mixed and people have very strong opinions for both sides, most of which weren’t always factual and badly articulated (keyboard warriors). The only thing we were sure about is we didn’t want to breed, since one puppy is enough!

I love a good list, so I made a pros and cons list. Reasons to have the op included:

⁃ don’t have to worry about getting female dogs pregnant.

⁃ Don’t have to worry about keeping him away from female dogs when out walking

⁃ He’d hump things less. Not that we were bothered about this from an embarrassment point of view- we live in the countryside and all of us are of the opinion that animal instincts shouldn’t be suppressed because it’s inconvenient for humans. But he gets randomly snappy right before he starts doing it, which is obviously a bad thing if he bit someone

⁃ There are health benefits. Some dogs who don’t get neutered have health complications later in life and still need it done, which is harder for them.

Reasons not to have it:

⁃ I like his temperament and I was worried changing hormones might change his personality

⁃ Recovery time afterwards. Although after asking friends, I found out that most dogs bounced back after a couple of days

⁃ I didn’t want him having a procedure unnecessarily, if there wasn’t a decent medical reason for it

My life is controlled by what my hormones are doing, so I know first hand exactly how changing your hormones can be a horrendous experience. This is why I need a medical dog in the first place! I didn’t want to put him through something which might make him feel horrible for the sake of it. But I was also really conscious that if we were going to do it, it would be better to do it sooner rather than later, both for his benefit and because there’s no point in doing scent training with him so he can detect changes in cortisol in me, if the op was going to alter his hormones. Which could affect his sense of smell, resulting in having to do the training again.

In the end, it kind of got decided for us. I’d asked my friends who had dogs and they all said that he might be fine when he’s out and comes across a female dog and he’s on a lead and we can control him. But dogs get super strong when their hormones kick in and we might not be able to control him, or what if he was off the lead? Their sense of smell and hearing is so much better than humans so they clock things before we do, so we might not get any warning until he was running off. Hamish is a big dog for a puppy and when he does pull, mum and I can’t stop him and dad struggles. After a few episodes where he was out with dad and got quite aggressive when he saw female dogs, despite being on his lead, we decided we should get him the op. We were worried he’d hurt someone by pulling them over, particularly as it doesn’t take much for me to break bones or dislocate things. And we didn’t want him terrorising and provoking other dogs. Look how big he is!

Once we’d decided, it was all very quick! We rang the vet and made an appointment for the following week. They checked he’d had all his vaccines, told us not to give him any food or water beyond midnight the night before and said we’d drop him off in the morning and he’d be able to go home in the afternoon, providing he was ok. You have to pay for the procedure and any prescriptions he needs afterwards, like pain killers or antibiotics. The cost varies depending on if it’s done laparoscopically (keyhole surgery) or if they have to do open surgery, but for male dogs it’s about £300. And they take into account the size of the dog (bigger dogs need more anaesthetic/takes longer) so we were glad we did it before he got too big!

I’ll write a separate post about the op day itself and aftercare. Here’s a photo of him just because he’s cute 😉

It’s because I’m fat

CW: weight, diet, obesity, overweight, underweight, medical gaslighting

Being fat, overweight or obese comes up a lot in discussions with medics. I decided a long time ago that I would ignore most people who made a comment about me being overweight and I’d be direct and/or blunt back. I know I’m overweight. I can see it, I don’t need to be told it every time I meet a new medical professional like they’re the first to tell me. The majority of people treating me have the attitude that overweight = unhealthy lifestyle and thin means healthy. If you’ve ever been severely under or over weight, you know that’s not necessarily true. I’ve been fortunate (ha) to have been both, so can say you definitely get hassled more when you’re overweight than when you’re underweight. Firstly, you get asked if you’ve tried to lose weight. Then no matter what you reply, you’ll be told that most of your health problems will get better if you lose weight (so they’re all your fault) and that you really should try to lose weight. Oh, and you should exercise. The assumption is that you’ve clearly not tried anything to lose weight.

The thing that drives me mad the most, is that no matter what you answer, you pretty much get the same speech. Which means it’s pre-rehearsed and doesn’t usually bear any relevance to your individual care. They may as well be reading a script. For example, I was given the ‘you should exercise’ talk while I was sat with my arm in a sling and both feet in casts. How? How exactly would I exercise? Lifting weights with my little finger? The other thing which is annoying is the people lecturing me aren’t usually pixies either!

What I find fascinating though, is that medics are usually quite happy to preach to you about your weight, but when you point it out or get into specifics, they get a bit awkward. It’s partly because you’ve made them deviate from their rehearsed speech, but it’s also because if you think about it, the medical system isn’t actually equipped to deal with overweight and obese people. This is despite the fact that a lot of the people who are chronically ill, and therefore use the system the most, are overweight as a result of or linked to their health conditions.

These examples have all happened to me.

Physio: can you bring your knee to your chest

*I attempt to*

Physio: that’s not a great range of movement in your hip.

Me: oh, no, that’s not because I can’t do it. It’s because I’m fat and my stomach gets in the way so there’s no more room for me to do it.

She changed the subject. The real problem here is that if I hadn’t said anything, she would have assumed I had poor range of movement. The test doesn’t work on obese people.

Physical exams and imaging aren’t geared up for overweight people either. I fractured my pelvis in 2 places. I went to a&e multiple times and told people I thought I’d fractured my hip. They did x rays but they came out terrible quality, because they couldn’t see through the body fat I have around my pelvis. Rather than ordering better imaging (MRI) to double check, they assumed that I had soft tissue damage and the pain wasn’t as bad as I was saying it was. Bearing in mind I have osteoporosis, they really should have done the MRI sooner than 4 months down the line. But the doctors said that me being overweight was exacerbating the muscular pain I had. Eventually one doctor listened and got me an MRI which showed I had 2 fractures, and suddenly everyone’s attitude towards me changed. But I was dismissed a lot beforehand because of being overweight.

Doctor: you’ve got stretch marks all over your torso. This is a sign of too many steroids or Cushings disease (too much cortisol) and the fact you’re overweight. You need to taper and lose weight.

Me: you say that, but I had stretch marks when I was really thin too, and I put on more weight when I taper my steroids, not the other way round.

What was actually happening is I’d taper my steroids which were accidentally treating spontaneous angeiodema (allergy-type swelling, can lead to anaphylaxis) so I’d “put on weight” and get more stretch marks when I tapered, because my swelling flares more. But because I was already overweight, the assumption was I was lying about my weight gain trends. Plus, because I’m fat, whenever I did try to explain that my face and abdomen regularly swelled up, everyone just assumed I was trying to make excuses for being fat and there wasn’t any swelling. Whereas I was having allergic reactions which kept going untreated. Pretty dangerous, right?

Nurse: you’ve got really good blood pressure today. Well done!

Me: that’s actually pretty low for me

Nurse: it’s in perfect range so it’s fine.

It wasn’t fine, I was pretty ill later. I was in hospital after an adrenal crisis and normally my blood pressure is ridiculously high. Partly because I’m overweight and most overweight people have high blood pressure. So what’s normal range for not overweight people can actually be low for overweight people. The ranges of what’s considered “normal” are applied to everyone, whereas what should happen is you know what your personal baseline is and anything out of that is considered abnormal. For example, a normal blood pressure for me is 130/90 or something. So 170/120 is high for me (and would be virtually catastrophic for someone in the “normal” category) but 95/65 would be low for me, even though it’s technically normal.

A similar thing happens with lab range results for blood tests, and medication doses. The bottom line is, if you have more body mass, you’re going to need more medication than someone who doesn’t. This is acknowledged with kids in that they do a lot of doses on mg per kilo. But they don’t with adults. It’s a bit like putting squash in a glass and diluting it with water and then expecting the same results when you put the same amount of squash in a bathtub. For example, the baseline dose for hydrocortisone for adrenal insufficiency (what I have) is 20mg per day. I was struggling on this and told many, many people (who were also telling me that I was on too many steroids because of my stretch marks). Eventually I got a new endocrinologist who said I wasn’t on enough steroids for my weight, and he increased it to 30mg. It wasn’t a miracle cure, but I didn’t feel like I was dying as much! Now if anyone questions my baseline, I bluntly tell them it’s because I’m fat and I need more than someone who isn’t.

Me: I have this feeling where I need to eat, otherwise it ends badly

Doctors: what do you mean badly?

Me: I end up with really bad stomach ache and diarrhea and it usually ends up with me in hospital

Doctors: well that’s not possible. You’re probably just hungry. You need to learn to ignore your hunger and eat healthy things which fill you up. You’re clearly not suffering from malnutrition since you’re not underweight and haven’t had any dramatic weight loss, so your diarrhea is probably fine too.

Me: I have lost weight though, I’ve lost 2 stone

Doctors: but you’re still obese, so….

The implication being, I’m fat so I’m just overeating and trying to find an excuse to justify it. And my diarrhea can’t be that bad because I’m still fat, so clearly I’m absorbing all of my nutrients. Actually, the amount of weight I’d lost in the time I’d lost it would have been a red flag for someone who started at a “normal” weight. Now I have multiple vitamin deficiencies and doctors keep circling around the idea I might have inflammatory bowel disease. The need to eat thing? All the diarrhea was making my cortisol drop, which was making me have hypoglycaemic episodes (where you have to eat to treat it) and if I didn’t eat, I’d get more ill, have more diarrhea as my body went into adrenal crisis and end up in hospital on an IV. But all this was ignored for a long time, because I’m fat.

Don’t get me wrong, being overweight doesn’t help any of my health conditions and losing weight would. I’m not disputing that. What I’m saying is the healthcare system and the staff don’t always know what to do with people who are overweight and our treatment is often affected by this. Either because the science doesn’t work/needs applied differently or because staff’s preconceptions and assumptions influence their diagnostic thought process. The fact is, I’m fat, I’m not going to lose weight overnight no matter how hard I try so there needs to be something in the system which works with my current body mass, rather than it just relying on me losing weight. And I definitely shouldn’t be overlooked or not believed because of my weight.

Like I said, I’ve had the “advantage” of being a UK size 8 and thin for a lot of my life, so I know (in my more rational moments) that my diet and lack of exercise aren’t the problem. It’s not a lack of willpower. It’s a symptom of a much bigger set of conditions which we’re still trying to figure out. I just wish that healthcare professionals were able to look past my weight and didn’t blame me for it!

Puppy Grooming (Medical Dog)

January 2022

We took Hamish to the groomers at Pets At Home today. He’s not a dirty dog, in fact I think he’s quite clean, but it’s a good idea to get him used to things like grooming and other people handling him while he’s still a puppy. Plus we had a voucher which is always a good thing! Labradors are more prone to things like eye and ear infections, particularly if their hair is long around those areas, so I wanted to make sure that we were doing the right thing here. And I don’t trust myself to do it!

He was not a fan. The staff member was really friendly and he seemed to like her a lot when he met her. The grooming section had a big glass window so we could see that there were dog sized trough baths and extendable shower and hairdryer attachments hanging from the ceiling. Unfortunately for Hamish, this meant that he could see all of the people in the shop too, and we found out later that this was quite a big problem for the lady who was grooming him, because he likes to be able to see and play with other people, and obviously didn’t understand that there was glass in between. It must be very difficult to wrestle with a wet and excitable puppy!

We checked him in and the lady said it would take about two hours to give him an overall trim and a bath and to clip his nails. We were given the option of adding on some extras, so we decided to add on teeth brushing, paw pad protection because we noticed he was limping a bit the last couple of days. She took him to the bit behind the glass and we went off to get a coffee and wait. After about an hour she rang and said that he’d had enough and we could hear him barking in the background. He’d found the whole thing a bit overwhelming, largely because of the big glass window. But also because it’s a lot of stimulation for a puppy to have someone prodding and poking him quite so much, and he’s not overly a fan of getting wet or dried. Although the lady said that he didn’t mind the hairdryer and quite enjoyed it actually, which is a bit odd considering he hates the hoover!

He wasn’t badly behaved though apparently. It was just a bit too much for him to handle. Although I suspect it’s more to do with the fact that he probably was a bit difficult to wrestle if he was that excited about seeing the people through the window, especially when he’s also wet and slippery! I’ll try again in a few more weeks and hopefully he’ll be able to handle a bit more and we’ll just keep extending the time every time we go.

He looks a bit tidier even if she didn’t manage to do anything except his eyes, ears and feet!

March 2022

Hamish got really hairy. Like, really hairy. We decided we had to risk trying to get him groomed again because he was getting really hot and it was more and more difficult keeping on top of brushing him. Here’s his before photos:

We tried to find a local, small business groomers to use, but we couldn’t get him booked anywhere. The dog grooming industry must be booming because there are long waiting lists to be accepted as “clients” here, let alone actually getting him booked in! Which meant we ended up back at Pets At Home.

We booked an appointment for during the week rather than at the weekend so it was a bit quieter in the shop. In general, Hamish was a lot calmer around other dogs and people this time, because he’d grown up a bit and we’d been doing puppy training with him. He was still excited to see the staff but he managed the whole groom this time! He’d had his teeth and paws checked at the vets recently, so we didn’t have to worry about those extras this time, we just needed him grooming and bathed.

He looked very pleased with his “new look”. The staff delivered him back to us with a red bow tie on his collar, which was a nice touch.

Here’s the “official” after photo:

We didn’t get any phone calls saying he was stressed out and he was all happy and wagging his tail when we went to pick him up. It took them about an hour and a half to give him a bath and trim his hair. All in all, a success this time round!

Exciting Times

The last 2 years have been bizarre for everyone, but it’s been a particularly strange time for me. Highlights include:

⁃ my husband and I deciding to divorce following an argument about Tupperware (I kid you not). Ok, so it was a bit more complicated than that, but Tupperware was the last conversation we had!

⁃ Being admitted to hospital later that day and seeing a&e staff doing covid drills in full PPE. Which we’re all used to now, but this was early days pandemic so was really weird!

⁃ Accidentally moving back in with my parents 200 miles north. My dad picked me up from the hospital and we drove straight up north with a bag my friend had helped me pack hastily the night before. I was only going to stay a couple of weeks.

⁃ Getting put in lockdown with the rest of the country, so a couple of weeks turned into months. Then years! Hence the “accidentally” moving back in bit. But I only had that one bag packed and some random stuff my ex husband had posted to me, I’d been told I had to shield so we weren’t allowed out to buy anything, and online shopping was limited. When you start to get divorced, your bank accounts and spending get scrutinised so I was having to justify the money I was spending, I didn’t have a job so no income, and I couldn’t get stuff from my house because a) lockdowns and b) I wasn’t allowed to until solicitors had agreed how our stuff was to be divided. I lived out of a suitcase for about a year.

⁃ Just general pandemic stuff. Need I say more?

⁃ Got divorced, sold my house and moved my house contents all remotely/virtually. Do not recommend.

⁃ Fractured a lot of bones and, because it didn’t get checked properly from covid stopping face to face appointments, spent a year with my shoulder partially out of socket after dislocating it. Also do not recommend.

⁃ Had a couple of bad adrenal episodes, found out I’m allergic to a lot of things I didn’t know about, and got diagnosed with several more health conditions.

⁃ Realised I probably won’t have children ever and that I’m disabled enough that I can’t live by myself, but not disabled enough in the government’s opinion to qualify for anything useful (although it’s also down to my age and a bunch of other stupid things. Don’t get me started). It took almost a year of backwards and forwards trying to fathom it- this is why I’m still living with my parents!

⁃ Spending 2 years hiding from covid and being the covid police in my house, because everyone told me I’d probably die if I got it. Then actually getting covid 2 years later and not even noticing I had it except for the fact I did an LFT. Big anticlimax and credit goes to the vaccination, but a good job it worked out that way round! (Side note: it’s so bizarre that things like PPE, LFT and furlough are just part of our vernacular now!)

It’s not all been weird though.

⁃ I adopted a puppy, who we’re hopefully going to train as a medical alert dog.

⁃ I went on a couple of holidays with my parents and my brother’s family. I get to see a lot more of all of them.

⁃ My parents didn’t kick me out so I didn’t become homeless!

⁃ As an adult, I can now fully appreciate growing up here.

However, as kind as my parents have been letting me stay in the spare room for 2 weeks which turned into 2 years, it’s not a great living situation for any of us. I don’t want to be a 35 year old living with my parents and vice versa. Originally, I was going to buy somewhere locally with the settlement from my divorce so my parents could help me out, but I’d still be independent. But when I kept fracturing things and ending up in hospital, I realised that wasn’t very feasible. Plus public transport is a nightmare here and I can’t drive, so my parents would still be doing everything they are now, but having to drive around to do it. And, let’s face it, my health is only going to get worse from now on. Even in the relatively short amount of time I’ve been here and despite my parents living in a bungalow, the house isn’t fit for me and my disability. Eg there’s steps up into the house which were too high for me, so we had to get half steps put in so I could leave the house once I fractured both feet- I still had to go to hospital appointments at the very least. Or the shower is over the bath and when I fractured my pelvis, I couldn’t get in it at all so I basically didn’t wash for 3 weeks. Even now, 5 months later with it still healing, my mum and I have devised a makeshift solution which involves moving one of the breakfast bar stools from the kitchen to the bathroom, opening the shower screen, pivoting from said bar stool into the bath and standing up, using sucker pads to pull the shower screen back into place and using my shower stool. Yeah, we could replace their bathroom, but they don’t want or need disabled friendly things necessarily. I’d be a pretty terrible daughter if I moved back in with my parents and then demanded they change 90% of their house to suit me.

I got the “better” deal in the divorce, in that I got the majority of the sale of our house money. [I wouldn’t be feeling too sorry for my ex- husband if I were you, though. I’m disabled and we’re now divorced. We were allowed to do it the “quick” way, thankfully, which is where one party admits to unreasonable/unacceptable behaviour. Or an affair. (The laws changed this week, there’s no “long” way now). There’s a reason why I got the better deal!] It didn’t make me a millionaire overnight but it means I can set myself up to at least try to live with an (albeit fake) sense of independence.

My parents and I joked all the way through early covid that we should convert the garage into a quarantine zone/self contained flat in case any of us got it. But then we got to the realisation of me being here long term and we stopped joking and started thinking. People build granny flats for their elderly relatives to be close but not actually living with them, why couldn’t we build an Isobel flat? My parents have a big ish garden and I wouldn’t need a full size kitchen or living space, because I can’t make most of my own food myself anyway, and I spend the day watching TV and crocheting. I’d need somewhere to sleep, a bathroom and somewhere I could make my own cups of tea and use a microwave. An Isobel flat.

The beauty of designing something fit for what I actually need from scratch, is that it can be laid out exactly the way I need it, including having a ramp to get in and out. It works out cheaper than adapting what we already have, it’s less disruption than renovating (we wouldn’t lose a kitchen or bathroom while it was happening) and it can include new technology and things like anti slip flooring, carefully regulated heating etc. Which might sound “cool” rather than practical but basic things like that or using voice controlled systems makes living with a disability so much easier. They’ve started using Alexa and iPads in some hospitals for patients in ICU or traction for similar reasons- it means the person can be independent and it saves money and time on physical care.

I’ve been doing research into accessible spaces and thinking about what I’d need now and when (because it is a when, not an if) my health deteriorates further. The advantage of having dislocated my shoulder, and fracturing both feet and my pelvis all at the same time is that you don’t get much more physically disabled than that before you’d need to be thinking about different care anyway. As a general rule, UK houses are not disabled friendly. And I already know what I need from an adrenal insufficiency point of view (for fatigue, dizziness, all the other random symptoms).

So it’s exciting times! In the last couple of weeks, we’ve got the planning permission sorted and started talking to our builder and architect in more detail. My mum and I went to kitchen and bathroom shops to scope out what I could have and how I could adapt things to suit my needs.

I’ll write more posts about my random thoughts when planning, but in the meantime I’m open to ideas and stories from other people. Has anyone else done a similar project? Or let me know things in your kitchen and bathroom you really couldn’t live without. Hit me with your thoughts! 🙂

To stress dose or not to stress dose

That is the question! This week, my puppy has to have *the* operation (he’s getting neutered). It’s a very straight forward operation and he’ll be fine, but I need to work out what, if anything, I should do with my steroids that day.

Something that surprised me, and which most doctors don’t recognise, is that emotional stress is actually a lot more complicated to handle than a physical injury or illness when you have adrenal insufficiency. You’d think it would be obvious, considering the clue is in the name- stress dosing. But the only emotional stress doctors tell you to stress dose for is bereavement. Everything else, you’re supposed to just be able to cope with on your normal steroids. Which is ridiculous!

Here’s a quick bit of the science. Despite what the media will have you believe, making cortisol when you need it is a good thing. Cortisol gets a bit of a bad rep because it’s the stress hormone, and you should be avoiding stress and (according to them) avoid raising your cortisol level. But everyone makes cortisol every day anyway, because it’s one of the key hormones which keeps you alive- you die without enough cortisol. Prolonged stress and elevated cortisol is definitely bad, but cortisol is also what keeps you safe and alive in stressful situations. In a normal human, the body’s fight or flight system gets triggered, either by something physical or something emotional and it produces a lot of hormones until the stressful thing has passed. Eg if you get a nail stuck in your foot, the body will keep producing hormones until you get it taken out, then the hormones will go back to a normal level. Or if you’ve got an exam, the hormones will help keep you focussed until it’s over, and then they’ll reduce. One of these hormones is cortisol. People with adrenal insufficiency don’t make cortisol, so we have to replace it with steroids. We take a baseline dose every day and then we have to stress dose or updose for anything our bodies perceive as stressful which happens on top of that.

Perceive is the operative word. Rationally, I know my puppy’s operation is routine and he’ll be fine. I spend all of my life dealing with medical things and living on a knife edge, so the fact that this is a planned, routine thing is actually a bit of a luxury. But my subconscious will obviously experience some level of stress even if mentally I’m ok with it. Here’s why:

⁃ my puppy will spend all day away from me. Except for when I’ve been in hospital, we spend every day together. So it’s a big change in my routine as it is.

⁃ He’ll be sad afterwards and won’t understand what’s going on. This will make me sad.

⁃ It’s usually me who undergoes medical stuff. I’m not actually used to watching other people experience it!

⁃ Even really routine operations go wrong sometimes

⁃ He can’t talk, so he won’t be able to tell me what he needs or wants afterwards.

No matter how much CBT, mantras or yoga I do (or kale I eat) will eliminate every stress for it. Because even though there’s a conscious response to something stressful where those things might help, there’s also a physiological response running in the background, which you can’t do anything about. And one of those is a rise in cortisol, which my body can’t do.

It seems I’ve answered my own question, doesn’t it? Yes, I should stress dose. But I also have to factor in some other stuff:

⁃ I’m supposed to be tapering my steroids from the last time I had to stress dose, back down to my baseline. Stress dosing would mean I’d have to repeat some of the (gruelling) process again

⁃ Steroid guilt is a big factor. Doctors vehemently told me for years that you only stress dose for bereavement. Any other stuff, you’re supposed to just ride it out. People are slowly recognising that this advice was fundamentally wrong, but it takes longer than a few months to eradicate what was essentially medical gaslighting from your mind.

⁃ Adjusting steroids is guesswork. There’s no test I can do to see how much cortisol is in my blood. Cortisol levels change at the drop of a hat for really mundane things, which makes it even harder to manage. For example, if you’ve been constipated for a few days and then manage to go to the toilet, your body uses up cortisol fast to do that. I don’t know about you, but I don’t schedule when I’m going to do a big poo when I plan my week!

⁃ If everything goes well and is over quickly, I’ll potentially have too much cortisol floating around my system, which also makes you feel weird. Or like I said at the beginning, emotional stress is hard to judge, because who knows how you’re going to react to something on any given day?

What I’ll probably end up doing is having a bit extra steroids wise in the morning until I know he’s out of the op and is ok. That way, I’ll have covered myself for any subconscious anxiety and won’t just keel over straight away if something does go wrong or he’s poorly. Then I’ll play the rest by ear. An extra 5mg at 6am won’t hinder my taper plan and won’t do me any harm. With adrenal insufficiency, it’s always better to err on the side of caution and have extra steroids than it is to deprive your body of them.

He’ll be fine, and if something isn’t fine, we’ll deal with it if it happens. Despite having a condition where stress can literally kill me, I’m pretty calm in a crisis 😉

What are you doing with your life?

Someone I know is in the process of moving to France with her family, and she’s been writing a blog about her preparations. It’s interesting to read and she writes it with a good sense of humour but I always feel a bit sad after reading it. I remember what it felt like to be making plans to move abroad, I moved to France for a year abroad and it was amazing. I’d do it again in a heartbeat, or maybe somewhere else. Just the idea of living somewhere and experiencing all the culture and language is exciting.

But I can’t. I can’t because my chronic illnesses and health won’t let me. I’m basically a (almost) 35 year old stuck in a 70 year old’s body. To start off with, I thought I was jealous of people who can make exciting plans, like moving abroad. Then I realised it wasn’t jealousy. I feel angry. But not about what I first thought.

Realistically, even if my health wasn’t so bad, I probably wouldn’t be making exciting plans. Because I’d still be married and I’d feel obligated to make our marriage work and he’d never want to do anything as adventurous as move abroad, despite what he’d like everyone to believe. Getting divorced and not having any children could be quite exciting because you have the chance to completely reinvent yourself, make a clean break and have a world of possibilities open up to you where you don’t have to compromise or factor in anyone else. But I can’t.

But that’s not even what I feel angry about. I feel angry about all the “normal” people who are in a similar situation to what I probably would’ve been in. Getting through life from one life milestone that’s expected of you to the next. Get married, buy a house, advance in your career, have kids. Obviously, responsibilities take over eg you have to factor in kids and can’t just quit work overnight. But I know someone who has kids and responsibilities and she’s still managing to move to France as part of her adventurous life.

Those “normal life” things are ok if that’s how you want your life to be. And that’s how I did want my life to be like, and, to be perfectly honest, I’d give an arm and a leg to have even remotely that family life with a good career. I’d still have adventures, like holidays, but they wouldn’t be radical or particularly exciting.

This is where I get angry. Covid levelled the playing field for me. Suddenly everyone was stuck at home, complaining about an illness interrupting and ruining their lives, wishing they were able to do all these amazing things they’d had planned and not being able to. I don’t do a lot of complaining about my circumstances but I can’t deny that I do wish my life was different. People could relate to what I feel like every day. Stuck. Taking each day as it comes because you have no idea if you’ll be able to do something in the future or not. I didn’t fully appreciate the life I had before I got sick, until it got taken away from me. I knew I was privileged to have that life but I didn’t value it in the same way I would now with hindsight.

But unlike me, the majority of people who had their lives cancelled for 2 years because of an illness, are getting their lives back somehow or other (excluding long covid people, obviously). They might not even have been sick from covid, but it definitely made them wistful to go back to their old lives and a lot of people said lockdown made them evaluate how they lived.

So I’m annoyed that they get the benefit of hindsight without (necessarily) having had covid or an illness like mine symptoms wise. And I’m angry that so many people seem to have forgotten the internal bargaining of “I need to do more with my life, if we get out of covid I will do X” that they did. Why are people not seizing every chance they get to be adventurous and do new things, or at the very least appreciate their lives they do have? Why have they forgotten that they were so limited and how horrible it felt? How can they not be doing something about it? They literally had the life altering experience of being struck down by illness but without the crappy actually getting ill part. Basically, in lockdown they got time to sit around in their pjs and watch Netflix, reflect on their lives and not feel like they’re dying every day. So why are they not living life to the full now?

I don’t know why. I know if my health ever improved, I wouldn’t be waiting around. I’d be doing whatever I could to get the life I wanted.

I’m not judging anyone whose perfect life is exactly what I mentioned (family etc). Well done for making it happen and making the most of everything (that’s not sarcasm by the way). But if you’re one of the people still moaning about your family life with a good career, then what are you doing with your life? Why aren’t you doing something about it?

Like I said, if I hadn’t got sick, I’d be doing the same as everyone else. But I did get sick and it made me realise a lot of things and take stock. To the people who didn’t get sick like me but think covid ruined part of their lives, what are you actually going to do about it?

Hindsight is a wonderful thing. But only if you’re going to make use of it. What are you doing with your life? Because if you think it should be “better” and you could do something about it, just do it.