Our First (proper) Trip Out (Medical Dog)

(There’s some practical info about our walk at the bottom)

We got Hamish in October, it’s now May and last week was the first time me and him managed to have a proper trip out together. By proper trip, I mean somewhere that wasn’t just me and him going for a walk/scoot in the local nature reserve or up the road for a walk. Being able to go out for the day with a dog was, and still is, one of the main draws for us getting one. For me, it’s a bit of company while sitting somewhere if other people want to do things I physically can’t do eg fairground attractions or paths I can’t access, and it’s just nice exploring somewhere with your dog. My parents have been on more further afield walks with him, but our trip out last week was still pretty new to them too.

There were lots of reasons why me and him hadn’t been out before: Winter, covid, injuries, illness, general busy-ness (my parents, not me) so when it was due to be sunny at the weekend, we decided we’d go out for the afternoon together. We’re lucky to live in the Lake District so have views like this about half an hour away.

Taking a dog out seems to be as much of a logistical faff as getting kids ready to go out. You need treats, toys, water, poo bags, lead, water bowl, spare food… basically a lot of “just in case” things, like you do with kids! And we had to time it around when he decided to flop and have a nap- again, just like having kids! But we sussed it and all got in the car.

We decided to go to Keswick, which is on the edge of Derwent Water*, one of the lakes in the Lake District.

*not technically a lake!

I quite like Keswick and spent a lot of time there as a child. Besides having a dog, so needing somewhere to go which is dog friendly, we also had to make sure that we could go somewhere that was (mobility) scooter friendly for me. Unsurprisingly, mountains and disabled access don’t go together too often! But in Keswick, there’s a pathway to Friar’s Crag, a very short walk from the Theatre By the Lake Car Park.

It’s now pretty accessible for wheelchairs and buggies. It’s a bit bumpy further on, because it’s next to a lake and it’s not been flattened (nor should it be), but the bit close to Keswick has been paved and is a bit like a boardwalk.

There are lots of benches along the route too. Which gave us an excuse to get some photos with our pretty photogenic dog!

You have to keep dogs on leads, or at least you should keep your dog on leads, but lots of people seemed to ignore this. We kept Hamish on his lead the whole time and he was still able to have a good sniff and look around and seemed quite happy.

Friar’s Crag is a pokey-outy bit (technical term!) of the path where you get a really good view over Derwent Water. To get to the last bit, you have to go down a reasonably steep bit of the path.

I could have managed it no problems with my scooter, but it was a bit busy and I don’t much like going up hills at the moment with my fractured pelvis, so I decided to wait at the top of the slope instead. It just meant that Hamish was super excited to see me again when he came back, even though he’d only been away from me for about 5 minutes! Makes you feel good though, getting greeted like that 😉

On the way back, dad took Hamish down to the beach on the lake. There are various points down the boardwalk bit where you can access the beach, most of them have steps down, but some had slopes (not paved paths, just slopes). Depending on your scooter, wheelchair or buggy, you could potentially get down on these, but mine doesn’t cope well with gravel or sand based surfaces. I watched from above instead

We saw someone else with their dog on a long lead, which meant that their dog could go in the lake. Next time we come, we’ll bring hamish’s 10m lead so he can have a paddle and cool off.

Back by the theatre is the main access to the beach where you can get on one of the lake boats for a tour or hire a rowing boat. There’s also a cafe and a couple of kiosks to buy drinks and snacks. I took my scooter down onto the beach and we sat on one of the benches and had a coffee.

Hamish and I had a bit of a wander about on the beach before we headed back to the car.

It was nice getting out together, going somewhere different from our usual walks. And it was a pretty successful trip! Next time, we’ll take Hamish ‘s long lead so he can go in the lake safely and without annoying other people.

Here’s the logistics, in case anyone needs/wants them (As someone with a disability, I like to scope things out online beforehand and this is the kind of stuff I find useful!):

Where: short walk from theatre by the lake to friar’s crag and back. It’s a paved or wheelchair/buggy friendly path. The bit closest to Keswick is mostly flat, but there are some steeper bits further up, all still wheelchair/ buggy friendly. My scooter is a foldable electric scooter and it coped fine with it. Walking along the road from the car park to the pathway is also a bit steep to start with.

Parking: Keswick theatre by the lake. Lots of disabled spaces which are free with a blue badge. Car parking charges for everyone else.

Toilets: there are public toilets in the car park, but you have to pay 40p to use them. The disabled toilet is free but only accessible if you have a radar key.

Food: there’s a a cafe there and a couple of kiosks. And usually an ice cream van of some sort! I’m gluten, dairy and soya free and was able to have coffee and a snack. Some of The English Lakes ice cream sold there is vegan. Lots of picnic benches/normal benches

Dog friendly as long as they’re on a lead.

2019: Year in Review (sort of)

It’s the end of the year and the time when people start to think about new year’s resolutions and what they achieved in the last year. It’s a natural time of reflection, even if ‘new year, new me’ mantras aren’t your thing- you can’t help but think about it because there’s a sort of deadline. 

–

I’m not going to do that. I kind of already touched on this when I wrote about our 5th wedding anniversary. I *could* talk about the things I’ve achieved this year and say how amazing some of the things I’ve done have been. But I’m not going to, because I don’t want my life to read like a list of bullet points on a CV. 

–

To summarise my 5 year anniversary post, I find the pressure people put themselves under to have the Instagram perfect life worrying. And a bit sickening. Sure, you can look like you have an amazing marriage/life/family on social media, but is it really? And does it have to be perfect every second of every day? No. Because that’s not what life is about. It can’t be and shouldn’t be perfect every second of every day because nothing is perfect. And if it were, I’m pretty sure people would compare levels of perfection somehow too!

–

What I’ve discovered in the last 18 months or so is that life isn’t about the things you can list at the end of the year and say you’ve done or achieved. Don’t get me wrong, accomplishments are definitely important in life, but stick with me and I’ll try to explain what I mean! 

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If you really put your mind to it and had unlimited access to money and were invincible, anyone could achieve anything. Climbing Mount Everest? You could do it. Become a CEO of a company? You could do that too. Give everything up and live in the jungle? You get the idea. A list of achievements isn’t really that big a deal if it’s just a ‘thing’ you’ve done.

–

Add in some restrictions or limitations, and that’s when it gets a bit more tricky. You couldn’t climb Mount Everest if you’re paralysed. You couldn’t become a CEO if you didn’t have the funds to invest. You couldn’t live in the jungle if you hadn’t learnt how to survive in the jungle, you’d get eaten on your first day. Suddenly these things become more of an achievement than just a ‘thing’. Why? Because it’s not just something to put on a list, it actually took effort to do those things. Or you had to adapt them to fit your circumstances. 

–

What makes it more than just a tick on the list? The feeling that comes with it. The sense of accomplishment, the rush of pride, the elation that something that seemed out of reach isn’t anymore. The ability to be able to share in your success with other people and celebrate it. In short, happiness. 

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The first thing I’ve learnt is that while life might be made up of accomplishments, that’s not what makes us happy. It’s the feelings that you associate with those accomplishments. Unless you do something really noteworthy in life, like be the next Martin Luther King, realistically no one really cares about your checklist of achievements. They’re personal to you, and because they’re personal to you and how you feel about them, it should become less about the thing and more about the feeling associated with them.

–

I used to be all about accomplishments. Head of faculty before I’m 30, tick. Married before I’m 30, another big tick. Homeowner, charity volunteer, some cool holidays, tick, tick, tick. Was I happy doing those things? Yep definitely. Now I’m housebound a lot and really not very healthy. But am I any less happy now that I’m not on such a high achievement track? No, actually, I think I have more sense of accomplishment, pride and feeling of elation doing the simple things in life than I ever did the big things. 

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I appreciate things more. I’m not just looking for the next big thing to challenge myself with. I enjoy what are really quite basic things. I don’t just look for the next thing on the horizon, I enjoy the meandering road to get there. I don’t consider the day to be wasted if I haven’t done something noteworthy by 3pm. If I had a nice day doing nothing but watching tv then that’s better than feeling anxious bit accomplished in having rushed around all day.

–

When I look back on my life, I’m positive I’ll look at the stuff I achieved but overall I’ll want to know that I was happy with *all* of my life. Not fragments of it. Because without invincibility, unlimited money and determination, most people won’t achieve everything they want to in life, but they can achieve an overall feeling of having had a good life. The big stuff counts, for sure, but it’s the seemingly mundane stuff in between that makes up the most of your life. 

–

I get a lot of joy from crocheting. I like watching how colours coordinate, I love being able to create things from a ball of yarn and it challenges me a bit every day. Does that seem like a big achievement to anyone else by itself? No. But do I enjoy doing it and does it make me happy? Yes. And it’s about all I can manage every day. I also like watching masterchef Australia most nights with my husband. We like talking about what’s going on and then he makes me laugh when he’s cooking and he’s quoting George and Gary talking about preparing a 3 hat dish (‘Taste, taste, taste’) while he’s making me something basic nachos. It’s not instagram worthy by any stretch of the imagination, but it’s those memories I think about when I’m feeling a bit low over the amazing CV worthy stuff. 

–

I think I have had some noteworthy achievements in 2019. But they’re things I’m proud of because I *feel* proud of them. And it’s the feeling I remember more than the achievement. They probably don’t mean much to someone who’s climbed Everest, but they matter to me, I celebrated them with people who care about me, and that’s all that’s important. Because life is made up of feelings and emotional responses to things more than the actual things itself. By all means, shout about your achievements of 2019 and be proud of them on social media. But remember the feeling that came with them more than caring about trying to make it look like a huge achievement for other people’s benefit. 

What do you want your legacy to be?

TW: death

Most of us won’t leave a lasting imprint of our time alive. Most of us won’t be famous, or won’t do something noteworthy enough for it to be historically documented. There’s a saying along the lines of you die twice: once when you physically die, and another time when the people who remember you or talk about you die. The idea being that your legacy lives on in a younger generation, until they don’t exist anymore.

Which got me thinking. What do I want my legacy to be? How do I want people to remember me?

(I realise this might sound like I’m dying, which, as far as I know *touch wood*, I’m the same level of ‘sick’ as I usually am! But I’ve had a few near death experiences, which means I’ve had to think about it more than the average person does)

I think the temptation for a lot of people is they want people to remember their name, either for good reasons or bad. Criminals are sometimes remembered more for their heinous crimes than do-gooders are for their actions. Why do people who want to kill themselves go shoot school children beforehand? Because their name will be plastered all over every news outlet and mentioned in commemoration events for years to come. But why get het up on the masses knowing your name? Because that’s all that gets remembered- your name and a Wikipedia entry of facts about yourself. That doesn’t say much about you as a person. I’ve been to a couple of funerals where the eulogy has basically sounded like a personal statement on a CV. A list of achievements and places lived. But is that really the be all and end all?

Being chronically ill has taught me a few things, but one significant thing it’s made me realise is the fact that the little things are what make up your life. The big things might be exciting and make for good social media sharing, but they’re not the things which stick with you. There are people who have an impact on my daily life for really mundane reasons, but it makes me smile when I think about it. Which is silly, but I think of them every day, while doing my boring stuff. If they died tomorrow, I’d probably think about them every day until I died. Not a particularly glamorous legacy, but thinking of them makes me happy every day. And maybe other stuff they do makes other people happy. So isn’t that as good a legacy as a noteworthy achievement? I think of my friends:

– when I get Alexa to turn the lights on when I go downstairs. One of my friends gets Alexa to remind her to make her bed every morning, which I found amusing when she told me!

– when I make a cup of tea. Every day, I fill it up too much and can’t quite get the milk in. A friend found this funny when she saw me do it, and said I was ‘living dangerously with my tea making’. But I still do it every day, and every day I think of her saying it

– when I’m drinking my tea. One friend told me once that the best way to make a cup of tea is to wait until it’s ‘chugging temperature’ and then drink it in one go. I never manage to get it right! That person’s now since died. So I guess that’s part of her legacy.

– when I finish my tea. A friend told me that her brother waits until you’ve finished every drop from your mug before taking it from you to wash it up (he likes washing up). Whereas I always leave a little bit in the bottom of mine. No idea why! But I think of it every time I finish a cup of tea.

– when I walk past our record player and see the Gershwin record which me and my friend love I’m reminded of her.

There are many other things I remember friends for which make me feel happy. But those are the ones I think about every day. I’d like to think that I’ve had an influence or impact on someone else’s thoughts somewhere at some point each day, but I don’t really know how or to what extent. Is that a bad thing though? If I’m not looking for fame or fortune or a lasting reputation, does it matter if I *know* what type of legacy I’m leaving behind? Not really.

I want to be remembered for my characteristics more than my actions. It might be in recognising actions that people remember my traits, but that’s not what I want to be remembered for. People remember more of what they felt at the time of something, over the actual event itself. A CV of my life is boring, anyone can achieve ‘stuff’. Whereas having an impact on someone’s thought process or emotional well-being might not leave a lasting footprint for the world to see, but will make a difference to an individual, and potentially other people they come into contact with.

That’s what I want to be remembered for. How about you?

Easy Friendships

It’s very easy for me to get stressed out by interactions with other people. For lots of reasons: I feel like I’m talking a foreign language half the time so I struggle to keep up; I worry I’ve said something to offend someone or said something I shouldn’t have, even if there’s no evidence to suggest it; I overanalyse what people say to a ridiculous degree but I can usually only remember half the conversation so my mind fills in gaps with negatives rather than what actually happened… not to mention if there’s background noise, some kind of activity involved, it’s hot… lots of external variables mean I can find social things pretty stressful, even if the people are super nice. Sometimes, if I’m having a really bad day, I don’t text or message anyone because if I don’t talk to people I know I can’t misconstrue anything and get paranoid. The problem is usually the way I perceive it rather than anything anyone else has done. And I tend to avoid people who are a bit tricky or prickly anyway.

Why do I do it? Some of it is to do with my mental health and some of it is physiological. And the two kind of aggravate each other in a loop. At social things, I tend to try to put on a show that everything’s fine or I get excited to talk to people. Which releases a lot of adrenaline fast and means I then crash quite spectacularly later, usually about 11pm when my cortisol is getting low anyway and the overanalysing, overthinking and getting paranoid starts.

Today I saw my endo, which, although not social, has a similar trigger. So now I can’t sleep because I’m ‘coming down’ and going over the conversation.

Some people might just say ‘well don’t think about it then’ but it doesn’t work like that. I can do all the rationalising and CBT I want but that’s where the physiological bit comes in- if you were walking down a street and someone jumped out at you from behind a building and you thought you were going to get mugged, you’d have a surge of adrenaline and a stress response. If that person then turned out to be your friend playing a joke, rationally and mentally you would know that everything is fine, but your body would take a while to come down from that. That’s what happens when I ‘come down’ after social things. It’s weird, I know!

So this week I have been grateful and reminded of several ‘easy friendships’. These are people that I feel happy to have conversations with and don’t spend hours fretting about them afterwards. I might get over excited seeing these friends, like I did with some visiting at the weekend, but the come down was less than if I’d been anxious about it as well. I don’t feel like I need to justify what I do to manage my illness or what I’m eating to them, like I sometimes do with other people. I don’t mind asking for help or explaining what I can and can’t do to them. I’m happy to spend time with them even if my husband isn’t around, because I regularly check with him and say ‘do I need to worry that I said…’.

It doesn’t mean that I dislike other social interactions with people, I have lots of very nice friends who are really supportive and I’m slowly expanding my ‘easy friendships’ group the more I build my confidence back up. But it’s complicated and takes time. So thank you to my friends whether it’s been in real life or by text/message who have reminded me that some friendships are ‘easy’ and I can feel like my old self more afterwards again.

Day Trip to the Beach

A friend and I have been trying to go on a trip to the beach for about a year and failed for a number of reasons. So this week we combined a trip to the beach at Barry Island with seeing a friend who lives near ish. It was vaguely spontaneous in that we picked a day that looked sunny, made sure our friend was free and off we went!

It was a successful trip! I mean, look how lovely it was, and how empty of people!

Going out for the day in term time is so much better than in the holidays and places are busy. One perk to not being in teaching anymore…

I was a little bit apprehensive, I admit. Not about spending time with friends, but me travelling anywhere can be complicated and in the past it’s not been a good idea/possible/safe/I’ve not been well enough. I’m pretty practical about my adrenal insufficiency, but it takes me a bit of planning. This day trip was a bigger deal than normal for me because:

• It’s the first time I’ve left the county without my husband pretty much for 2 years. I carry a lot of info about my condition in my emergency pack, wear medical ID and also have a tag that I put on the headrest of the car so that if we have an accident, people know that I’ve got a medical alert. But it all depends if people find those things/pay attention to them. My husband obviously knows everything about me or knows exactly what to say. My friends know me well too (clearly!), have been injection trained and wouldn’t let me die, but it’s a big deal not having the ‘safety net’ of my husband nearby.
• I’m not ‘known’ or red flagged when I leave the county. So in the midlands, if I ring an ambulance, I get a quick call out and the crew get given a lot of information about me before they arrive on scene because of the alert. But that only works with my local ambulance service, not anywhere else in the U.K.. A similar thing happens in my local hospital, but again, not anywhere else in the U.K. For context, I stopped visiting my parents for a while when I was really unstable because the hospitals where they live are so rural (and far away) that if anything happened I’d probably die.
• It’s not that long ago that I had a particularly bad experience in hospital where people did have my full records, let alone somewhere where they don’t.
• I’m an unusual case of an already unusual illness.
• I sometimes find long distances in cars and new places stressful because I need the toilet a lot because of my diabetes insipidus. Which might sound stupid, but it plays a massive part! I knew my friends wouldn’t mind, but it still played on my mind.
• I woke up that morning with my ‘adrenal crisis’ dream. It’s basically my body telling me to wake up and have more steroid because I’m getting low on cortisol and I could be heading for trouble. I dream I’m having an adrenal crisis and usually wake up as a I fall unconscious in my dream. So it’s actually pretty useful! But it does usually mean that I’m in for a bad day. However, despite having the dream, I felt ok when I woke up, so I guess that one was just anxiety.

All those things being said, I can’t live my life in a bubble and never leave the house. I could get knocked over by a car going to the shop and die like a normal person. Random things happen. I was also reassured in that my friend who drove us is super practical and calm and we spend a lot of time together, and that the friend who we were seeing is a nurse. I’ve also been considerably more stable since changing my steroids, so unless I’d woken up feeling terrible, it was likely I’d be absolutely fine, which wasn’t the case on my old treatment plan. However, the more you plan for things going wrong, the less chance there is of things going wrong. So I was still prepared!

And we had a lovely day! It was sunny weather, we had some lunch and chatted while sitting on the beach. It felt like a little holiday! I felt a bit more like ‘the old me’ and had a kind of ‘this is the kind of thing I’ve been missing out for the last 4 years’. It gave me a bit more confidence. It might be something that other people take for granted, being able to go on a day trip with friends, but it’s not something I’ve been able to do for a long time. And I did have to make sure I laid down for 2 days before so that I could manage it! It might only be a baby step, but it felt like a pretty big one for me! 🙂

Please don’t make decisions for me

I’m pretty sure that 90% of the time, people I know who come out with phrases like ‘I just assumed that…’ say them with good intentions. E.g.

I assumed you wouldn’t be able to do X

I didn’t think you’d want to X

I know that you find X difficult so I didn’t ask you about Y.

However. Maybe it’s because I studied languages at university so over analyse everything, perhaps I’m overly paranoid or maybe it’s something else entirely, but anything that has some kind of reference to the past tense rather than a continuous or future one says to me that someone has already made a decision for me. And I don’t like that, even if the intentions are entirely good.

It’s for 2 reasons:

1. I shouldn’t be excluded from things because I have a chronic illness which limits my physical activities. I should still be invited to things and it’s my decision as to whether I join in or not
2. It has everything to do with the way I view myself and my illness.

Thinking about point 1: I’m not an idiot. I know what my limitations are and I can come up with solutions, ask questions or know when to bow out and not take part. So extending an invitation rather than coming out with ‘I assumed that…’ is much better because it shows me that people still want me around. Because, when you’re chronically ill, there are a lot of fair weather people who ditch you so you do get a complex about it.

But then another thing to consider is that unless it’s an event like a hen party or baby shower where the focus is on one individual, it still should be my decision as to whether or not I join in even if it is something a bit out of my reach and I’d be pushing things slightly. If people genuinely want to spend time with me, it shouldn’t be an issue if I get it wrong and need some help during or afterwards. Because everyone pushes the boundaries and does things they know they shouldn’t because they want to feel alive- who’s been ill enough to need someone to help them to bed while throwing up after a night out because they drank too much? Or got stranded somewhere because they didn’t look up the train times properly? I’m not unreasonable or impractical about my illness; if I can’t work out a way to take part and I think I might burden people in any way, I’ll likely not take part. I’m already super paranoid about that. But that doesn’t mean the invitation should never be extended.

Don’t get me wrong, it’s great when people are able to think about how I can do things or understand my condition. But this is where the way I feel about it is important, the second point I made. If you tell me a list of reasons why I can’t do something that you’ve assumed based on what you know about me, even if genuine thought has gone into it, it comes across exactly the same as someone who is trying to exclude me from things. Particularly if the conversation is over text message. Because the words and language is exactly the same. So rather than feeling positive about outings or interactions, it causes a lot of anxiety and makes me hate the fact that I feel like I’m missing out and compromising because of illness. It puts up a wall between me getting out and trying to make the most of what I’ve got and feeling like I can’t say if I don’t feel well or need some help when we do go out. And I’m more likely to isolate myself which makes it worse. Me making a decision is me taking control of my life. That gets taken away if someone makes assumptions and then tells me what they’ve assumed.

Yeah you could say ‘you need to get over that, it’s all in your head’ but it’s very much a bigger picture thing. Because keeping alive in general is quite difficult sometimes, anything I can do to alleviate anything makes a difference. There’s a whole lot of emotions and feelings that come with having a long term illness which you can’t possibly contain 24/7, and not wanting to be a burden is one of the more tricky ones because it involves having to rationalise other people as well as your own thoughts. It’s hard work. And, like I said, you’re already having to work out hard lessons about people who actually don’t care about you, so how do you tell the difference if the use of language is the same?

So if you have a friend with a chronic illness who you genuinely care about and just want to show you’ve thought about them when socialising, please maybe think about the following:

• Try to avoid assumptions and guess work. Instead of ‘I assumed…’ saying things like ‘I’m just checking this still applies…’ or ask a direct question
• Explain what’s going on and ask what the other person thinks. I don’t think any of us have any issue with honesty or open discussions, it’s the cloak and dagger not talking about the elephant in the room cliches that are annoying (see what I did there 😉 )
• Instead of saying ‘you won’t be able to do X’, say ‘you’d be able to do X’. It’s a really minor change but it makes a hell of a difference
• If it’s really impossible for someone to do something e.g. Skydiving and you know fine well there’s not a chance in hell that they’d be able to do it, say so. Say ‘I’d really love it if you were able to do it with me but obviously you can’t’. Because there’s nothing worse than not having been told about something happening and then seeing it on Facebook when a simple one line sentence would have made a lot of difference self esteem wise.
• If you’ve gone to the effort to check out access or dietary requirements but there are other bits which the person definitely wouldn’t be able to manage, say so. We really appreciate people thinking of us, but if you only tell us what we can’t do or lead with it, it makes us focus on the negatives rather than the efforts you’ve made. And it can sometimes seem like you’re trying to make a token gesture but don’t actually want us to be involved in any of it if you lead with the can’ts rather than the cans.

It’s not really just people who have chronic illnesses who are prone to paranoid feelings about being excluded from things. Everyone gets paranoid when they feel excluded, it’s just the likelihood of being excluded increases when you have a chronic illness. And like I said, most people are practical and realistic about their illnesses, and won’t make unreasonable demands. But feeling included is really, really important.

Ps you also get some perks like good parking, free entry and discounts if you go out with me too 😉

I don’t care how often your child poos

If you’re an easily offended person or a parent having a particularly bad day then maybe skip this post or save it for later, although it is intended to be humorous! 😉 

A few weeks ago, I wrote a post about being questioned (interrogated) about my child(less) status and the circumstances around it. Lots of people messaged me to share their experiences, and it got me thinking a bit more about conversations I have with some mothers who have children at social things. Don’t get me wrong, I actually enjoy playing with kids and talking or hearing about the funny things that they do- but they have to actually be funny. Sometimes, parents get on a one track mind, and think that because they love talking about every aspect of their kids’ lives, other people do too. Or maybe it’s because they feel that they have little to talk about besides their kids, because they spend so much time with them. Either way, if you don’t have children, it can make you feel a bit awkward/irritated/bored/frustrated/grossed out…. after a while:

1. If you have chosen not to have a baby, then it’s unlikely you’ll want to talk about the things I’m going to mention in this post. That’s why you don’t have any kids of your own.
2. If you can’t have children for medical reasons, it’s pretty insensitive for the parent to talk incessantly about their child (NB I didn’t say not talk at all, I said talk incessantly).
3. If you can’t have children because your situation doesn’t allow for it e.g. you’re single, then it’s also pretty insensitive for the parent to only talk about their child.

Here are some conversations or scenarios which come up which make me a tad frustrated:

The child doesn’t have to be the focus of everything.

Kids take up a lot of time and energy. They require a lot of attention. I do like playing and interacting with children. But sometimes, it can feel a bit forced. I’m a big fan of children being allowed to choose who they interact with and have affection for for themselves, so I won’t hug or kiss your child even if you tell us both to if it clearly makes them uncomfortable. If they don’t want to play with me and want to go off and do their own thing, I don’t mind, it’s their choice. You don’t need to demonstrate their new ‘tricks’ to me. Also, photos. Believe it or not, it’s possible to take a photo without your child being in it as well. If the photo naturally is set up to include the child then no problem with that, but I have been told more than once that we can’t take a photo until X wakes up from their nap because they *need* to be in it.

Gifts with kids’ faces on them aren’t cute.

Ok, they are if you’re related or you’re a godparent, but have you ever considered how weird it is to give a mug (or whatever) with your baby/child’s face on it as a Christmas present to someone who doesn’t have kids? Firstly, that mug won’t ever come out of the cupboard except maybe when that parent comes over because it’s a bit creepy offering a mug with a child on it to someone visiting, especially if all of your friends with children do it- lots of kids’ faces on different mugs in the cupboard looks seriously dodgy to me! Secondly, I’ll point out the sensitivity/not wanting kids aspect again, and thirdly, it’s a pretty thoughtless present in general. It’s not specific or personal to me and requires very little thought on your part.

Don’t use your kids as an excuse.

I hate hearing the phrase ‘baby brain’. And before anyone says it, I actually do have ‘baby brain’ as part of my condition, but I work round it or I apologise and say ‘I forgot’. Using your kids as an excuse for not doing something/failing to reply to a text/not sending a birthday card… etc isn’t fair. I don’t mean ‘my kid got sick at school so I had to cancel our plans to go get them’, that’s obviously a justified thing and isn’t an excuse! Forgetting is human and is allowed every now and then. Using the fact that you have children as a get out of jail free card isn’t. How long are you going to keep that up for anyway, until they’re 18?

‘You don’t understand, you’re not a parent.’

What exactly do I not understand? I have people in my life I care about who I would want to protect or help at all costs. I’m an auntie. I interact with children a lot. I used to be a teacher. Hey, I even don’t get more than 4 hours sleep most nights and sometimes don’t sleep at all. I have empathy for others and I listen. I’d get it if this phrase was used in relation to something that I actually couldn’t understand, but it’s not, it’s usually used after the excuses mentioned above.

Selling parenthood to me.

Another thing that comes up a lot is the notion of not fully appreciating unconditional love until you have a baby (which I can’t understand because I’m not a parent…), which is usually followed by some kind of gushing about how amazing parenthood is. I refer you to points 1-3 above. Talking about kids is fine, I like that. Gushing for hours on end is not fine. Who’s it for anyway- are you trying to convince me that parenthood is great or yourself? If you want to moan about your kids, I’m fine with that, you don’t have to pretend it’s all lovely if it’s not!

You don’t deserve a medal for being a parent.

I say moaning about kids is fine, which it is, but not constantly. The impression I get at the moment from reading social media and blogs is that some mums think that they deserve some kind of medal because they’re coping with kids. Parenthood isn’t an illness or a burden or a cross to bear. People have been having kids since time begun. I completely agree that it’s challenging and hard bloody work and sometimes you must be tearing your hair out, but you are not the next Virgin Mary nor is your baby the new Messiah.

You’re not better than me because you have kids.

You don’t suddenly get an office with windows and a sofa type promotion above other humans because you’ve had a baby. It’s not a sacred club that people are invited to join. It’s life. Some people really look down their nose at me because I don’t have children and they do, and I can never work out why! It makes me feel like a failed human being, even though I like to think I’m not!

Not taking an interest in me.

Some parents get so focussed on talking about their kids that they forget to ask how I am or what I’ve been up to. It’s pretty rude, particularly if the conversation about their kids isn’t interesting. I went out to lunch with some friends and their babies a while ago and not one of them asked me a question about me, even though I asked about them and had to listen to (boring) child stories.

I don’t care how often your child poos.

This is what I mean about boring stories. I don’t care how often your child poos. Unless there’s a story linked to it, I really don’t care, and even then why are we talking about poo? Do you want to hear about my poos? Maybe that’s where I’m going wrong when I say people don’t take an interest in me, maybe I should get involved with how many times I’ve been to the toilet that day.

I’m writing this post mostly tongue-in-cheek if you hadn’t guessed, but the points I make are ones that I do find frustrating sometimes. I have lots of friends who manage to get the balance between parenthood and normal life conversations brilliantly and I love spending time with them and their kids. But considering so many mums and dads post on Facebook about missing adult conversation and ‘me time’, you’d think that they’d skip the poo conversations whenever we meet up!

Nurses’ Day

Anyone who’s been an inpatient in hospital will tell you that it’s the nurses who make your time there more bearable. Aside from being the ones who physically give you the drugs, the good nurses are ones who help you out of many undignified situations (and join in with the laughing or crying depending on your mood); they advocate for you when your doctor isn’t quite ‘getting it’ (and then explain off the record afterwards why they’re such a grump/stresshead); and just generally have a sixth sense about what you need when you need it. If you get on the wrong side of your nurses then you’re in trouble (and you’re an idiot).

I could talk about how they’re overworked and underpaid, but I doubt anyone goes into nursing thinking anything different (even if it’s wrong)- I know I knew to expect the same when I started teaching. They join the profession because they’re passionate about caring, which is pretty awesome. Doctors focus on lab work and tests and scans and then think about the human attached to them. Nurses are all about the humans and their needs, and use the information given to them to help deliver care. If you’re dying, it’s not a doctor standing with you while you take your last breaths- their bit is ‘done’- you can’t be fixed. It’s a nurse there. (Side note: Doctors can be great too, but this isn’t a post about doctors!) It’s physically demanding being a nurse, but it’s also emotionally hard too. How can you not care about losing a patient or seeing a patient upset? 

I go to hospital enough and go to the same wards meaning I now recognise the nursing staff. I get really anxious before the change of shift because I’ve had some negative experiences in hospital in the past, but if I see a nurse I recognise I immediately feel so much better. I know they’ll look after me- they’ll fight with the docs if need be, or ring the one on call if I need something at night or try and work out some better pain relief. It makes such a difference, and I feel more relief seeing nurses I know than seeing doctors I know. That’s how much of an impact they have on my hospital stays. 

I’ve got a few friends who are nurses in various fields who do great jobs. But I’ve got one nurse friend who has literally kept me alive for the last few years. Adrenal insufficiency is a stupid, volatile, unpredictable illness which is incredibly difficult to manage. There was a point where I was pleading with doctors to take me seriously when I was telling them I felt like I was dying and were it not for this friend saying ‘I believe there’s something seriously wrong’ I would have just keeled over and died at some point. Aside from support, he’s also helped me out massively managing my condition when it’s gone downhill fast, including injecting me last week with my emergency injection, plus he takes so much pressure off me by doing the mathematical nightmare that is my taper plan or helping me interpret what doctors mean, or translating my gut feelings/quirks into words that actually make sense to the doctors. He always comes to visit me when I get admitted, often after working a 12 hour shift and regularly ‘babysits’ me if I’m ill but not ill enough for hospital/I’m being stubborn (I offer him Netflix in return, I hasten to add). I could say more, but if I’m too nice he might think I’m seriously ill 😉 plus I’m liable to forget half of it. The gist of it is, I’m probably unaware of half the things he does for me and I wanted to say thank you. 

My other nurse friends have also offered me advice/moral support/a listening ear when I’ve needed it, so thank you too. Another friend has constantly been at the other end of messenger whenever I’ve needed to rant about what’s been going on, which helps so much. 🙂 The other wonderful thing about nurse friends is you can pretty much guarantee that one of them is on a night shift at any given time to send a ‘I’m bored and I can’t sleep’ middle of the night text to! 😉 

So happy nurses’ day, nurse friends/nurses who look after me and other patients. Thank you for what you do to make our lives more bearable when we’re feeling at our worst. 

Photo: RCN

Independence & Needing a ‘Babysitter’

I used to be really independent. I’ve lived abroad, travelled to many countries, negotiated my way through different languages/gesturing madly by myself… Not a lot phased me at one point.
The thing with independence is you have to keep practising it for it to be effective. I look at how unindependent I am now and I’m pretty horrified. I don’t leave the house by myself, I can’t cope at home by myself, people take me places and do basic things for me and I really, really get wound up about having to make a phone call. It’s not even a case of telling myself to ‘get on with it’ like I used to in the past, because if I do that and get myself a little stressed, my body reacts even if I don’t want it to and I end up in a big mess. So I’m not very independent at all now, but a lot of it is an unfortunate outcome due to circumstance rather than me being happy about it.

This week my husband had to work away overnight, which meant I needed a ‘babysitter’ and I went to a friend’s to sleepover. Some of this is because I can’t manage to make meals, tidy up, or I need help doing things because I can’t do them safely, but most people would assume that I could go to someone’s house for tea and then go to sleep in my own house overnight, which would be a reasonable assumption- I’m an adult, I’d be asleep and it’s only one night. What could go wrong?!
Lots is the answer. Night time is when I don’t take any medications (normally I don’t anyway, I have been this week). I haven’t spent a night by myself in years. If anything is likely to go wrong and I’m going to need help, it’s probably at night- most of my hospital admissions are at night. Earlier in the week involved a middle of the night phonecall for advice to a nurse friend because I woke up suddenly not feeling well and couldn’t work out what I needed to do. It’s a feeling I can’t fully describe but it’s kind of like running out of breath when you’re under water and desperately trying to get to the surface. You’re not really with it and you have to fight hard to keep yourself heading upwards rather than just giving up and floating underwater. I know for sure I couldn’t do my injection myself in that state if I had to. So the other side of independence is to do with confidence. Confidence is key to being independent, I’ve discovered.

Confidence is something that can take a long time to build up but seconds to destroy. Sometimes, it can be as simple as a flippant comment that someone makes or minor changes to a plan. They’re not big things to people who are independent and have confidence, but they are if you’ve had to build yourself up to do something in the first place. And because the only way you can get independence and confidence back is by pushing yourself bit by bit out of your comfort zone, very minor things soon become big things and make it less likely you’re going to try again in the future. 

A tough love approach might work if you want to get someone to do something as a one off, to prove that they can do it. So if someone has a fear of heights, making them do it might shock them into realising that it’s not that bad. But if you want someone to be able to do something repeatedly afterwards, tough love doesn’t necessarily work. It would probably shatter any confidence left into a million pieces. I could make myself stay at home by myself (which would be stupid anyway, because I physically wouldn’t be able to manage it), but the stress alone of having to do so would be enough to set off my fight or flight and then I’d definitely feel ill and alone and potentially have to sort out ambulances and hospital myself. Which would mean I wouldn’t want to do it again in the future because I’d remember those feelings of panic, which would make me twice as anxious than in the first place. It’s not just a lack of confidence with me, the stakes are irreversible if I get it wrong. Why don’t people leave kids alone by themselves? Because they can’t look after themselves, they might need help and lack the mental competency to do so themselves or they might hurt themselves. These things are all true for me at the moment. Hence needing a babysitter.

Instead of tough love, someone sitting down with you and helping you put together the pieces is more helpful (my friends are good at doing this for me). Sitting and looking at the bits waiting for something to happen or getting someone else to do all of the work for you are both unhelpful in the opposite way- it’s important to try to be as independent as possible within your own means of what you can manage. It’s finding the balance between support but not getting someone to do it all for you versus nudging in the right direction but not bullying. From having been a teacher and coached hundreds of kids through performances on stage, there are very few kids I used a tough love approach with because it tended to cause more problems than it solved. I didn’t lie, I told them if there were things they needed to do differently, but I didn’t tear them down while I did it and I always made sure I was there to help pick up any pieces.  

Realistically, building confidence and independence isn’t easy for anyone. Everyone has something that they lack confidence in, it’s just the degree with which it impacts on your life which differs. Some things I find difficult might appear trivial to others and likewise I have no issue with some tasks which other people find challenging. At the end of the day, it’s our previous experiences which have shaped our confidence now, so everyone is different. For me, sleeping over at my friends’ house meant that I knew there was someone nearby if I needed help and they made me meals and looked after me, but it didn’t feel any different from hanging out with my friends normally. I find it hard to ask for help and hate feeling like I’m a burden (my friends don’t make me feel like that, it’s my issue based on my previous experiences), so asking for help and receiving a positive outcome helped me regain a little bit of my confidence and will make me more likely to ask for help again in the future. 

Thanks to my lovely friends for having me stay over 🙂

New Year, New Outlook

A few months ago, I wrote a post about reconnecting with old friends. Christmas time is a time when people make an extra point of meeting up. So I crossed paths with some of the people that I’d tried to reconnect with earlier in the year, and, for whatever reason things hadn’t worked out. But I tend to give people lots of chances and look for the best in people, way more than most people do, so I met up with people thinking maybe I’d been too harsh a few months ago.

Firstly, I’d like to say thanks to all the people who are real friends. I like that we’re friends 🙂

A friend and I had a discussion, after I wrote the first blog, about how he has a ‘three strikes and you’re out’ rule. He’d had a similar experience to me in that he’d had a spell of poor health and, like me, found that lots of people made the right noises of support and friendship, but only a few actually came through and showed up. For some people, if you don’t ‘fit’ into their lives e.g. because you’re ill, they won’t make an effort. Once you ‘recover’, they think things will go back to how they were. Which it can’t if you’re the one they essentially ditched- that’s not friendship. It’s also quite condescending as it’s kind of saying you’re worth nothing when you’re not well. These people also have an annoying habit of being the ones who expect a lot of support when they need it but not giving any in return. My initial gut reaction when I was told about my friend’s 3 strikes rule was ‘that’s harsh’, but I thought about it and it makes sense. If my car broke down 3 times for the same reason, I’d replace it for being unreliable. Just because I can’t physically see my emotions doesn’t mean I should keep driving them into the ground. I wanted to see for sure if things were repairable or a write off- this year has been pretty full on in terms of hospital tests and admissions and I’ve got massive gaps in my memory where I was too sick to do an awful lot or to remember it if I did. I still tried to be involved in people’s lives though.

I now don’t think I was wrong to have come to those conclusions. In fact, I’m annoyed at myself that I let myself be duped and think that maybe people could change. I won’t go into masses of detail on here, that’s not fair. Some very general, non specific (i.e. have happened a few times with different people) examples include:

• spending time with people and them not asking a single question about me or my husband and talking about them and their lives the entire time. I purposefully didn’t say anything about my life with a few people to see if they cared enough to ask. Nope.
•  a few people a few years ago asked us (or at least insinuated) not to speak about babies in front of them because it was a stressful subject for them. Not a problem, especially as we don’t have kids ourselves. But it’s slightly hypocritical of them to then talk about topics which might be stressful for me non stop when we meet up now. I haven’t and wouldn’t ask people to avoid certain subjects, I’m not like that and it’s not fair (although I’m not going to lie, I’m finding diet and ‘I’m so fat’ when they’re not remotely overweight discussions are wearing my patience thin). I’m merely pointing out the hypocrisy of it.
• making excuses for lack of contact or effort, which, frankly, are pathetic. Everyone has busy lives, that really isn’t an excuse. I’d have more respect for people who said ‘sorry I’ve been crap, I’ll be better next year’ than trotting out some excuse. I’ve gone on moonpig from my hospital bed with my healthcare assistant helping me so that I can make sure I don’t miss a friend’s birthday/someone’s kid’s birthday. Why do I make that effort for someone who can’t even apologise properly or send/give a card in return? And if I did drop the ball, I’m more than happy to apologise whereas they’re not.
• people who only make contact when they want advice or help but are never going to be there for me in return. A few people have stopped visiting since I listened to them and their problems and they now feel better- they apparently have no reason to visit me now and can go back to being ‘busy’ in their lives like they were before.

Truth be told, I don’t have enough energy to waste on people who clearly don’t care about me. I don’t need big gestures, it takes 30 seconds to send a text or send a birthday/Christmas card. So my New Year’s resolution is to match the effort made by other people. There’s a danger that others will also do the same thing and so neither of us will get in contact, but I know who I want to keep in touch with and who I dont, and those I don’t want to keep in touch with haven’t really made an effort for a while now. So nothing will really change except for my feelings towards them- I refuse to feel guilty or feel responsible for something which isn’t my fault (something which I’m really bad for doing). Another friend pointed out that friendships evolve over time. True. But I can’t help feel that some friendships have evolved because I’m not of any ‘use’ or ‘interest’ to those people anymore because of my illness or circumstances brought about because of it, and I don’t think I need to call those people my friends anymore. Don’t get me wrong, I’m still going to be civil and sociable if our paths cross, but I won’t be making efforts to send them or their children birthday/Christmas cards and catch up texts or offering them any kind of support anymore (if I hadn’t stopped doing so already). It’s also really rude to suddenly stop communicating because I don’t have children myself- some people see being a mother as being part of an exclusive club and stop associating themselves with non-mothers in general, not just me. Of course mums are going to have different friends and interests after giving birth, that’s not what I’m talking about. Some people actively exclude childless women purely because they don’t have a baby no matter how much interest you express or how hard you try.

Getting emotionally involved or upset is actually really problematic for me. My body can’t cope with it even if I do a lot of rationalising and mindfulness. Emotional distress is one of the main causes for Adrenal crisis. If someone lets you down or treats you badly, your body instinctively responds with chemicals and hormones and my body can’t respond the way it should do so it literally drains energy I don’t have to start with. I can’t get angry and have a rant about it because it makes me physically sick. So it might seem harsh to wash my hands of people but it’s actually self preservation.

I’m done being nice to people who are self absorbed and only want friendship to work one way. I don’t like being manipulated. Even if I wasn’t sick, I don’t think those would be unreasonable responses anyway, but being ill has shown me some people’s true colours. I’m still all for second chances and making things work if other people want to make the effort, but not if it means making myself ill because of the emotional fallout.

I’m lucky to have some really great friendships, people I know I can count on to always ‘show up’ and who are there for the good times too. I’ve also been touched by people I didn’t think I knew very well who have been really supportive and have turned into good friends over this year. Every cloud has a silver lining, so as painful as it has been to acknowledge that some ‘friends’ have let me down badly, maybe it needed to happen so I could make room for new ones or spend more time with my good friends 🙂

Photo: Time Stops Photography