‘You Don’t Look Sick’

Four words guaranteed to annoy me and make me feel a little bit proud at the same time. Other variants might include ‘you look well today’ or ‘you’re looking better than the last time I saw you’.

If the person has 100% good intentions then it’s easy to separate out. They genuinely are trying to be nice and it’s a compliment and I can feel proud rather than angry. I feel proud because despite how crap I’m feeling, someone has believed the charade I’m putting on that everything is fine. I don’t look sick and that was my goal. It’s sometimes hard to stop pretending everything’s fine though and turn it off, because I’ve been doing it a long time, which can cause problems

If the person is questioning my illness or insinuates they don’t believe me, or, worse, is a doctor or medic I desperately need help from but isn’t listening, comments like that come as a blow. It sets off a chain reaction of ‘they don’t believe me’ thoughts. It makes me dubious to trust them. It makes me question whether I’m just being dramatic and ‘making it up’- I never am, but if enough people tell you this over time, it’s a hard feeling to shake. Imagine if every time you said your age to someone they laughed at you and said ‘yeah right, you’re not that young’. It would give you a complex and you’d start to drive yourself crazy, despite being able to prove it quite easily. Even with friendly people with good intentions, it sometimes makes me a bit sad depending on what mood I’m in. I feel sad that I don’t feel understood, I feel isolated, sad that I have to justify myself for the billionth time and I really just want someone to ‘get it’. Those feelings multiply by 10 if the person is already scathing.

This resonates with me. I don’t know the source, someone shared it on an Addison’s Group I follow:

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The problem with having a rare illness is that doctors have limited experience with it meaning that they might have only seen a few people with it in their time as doctors. If those people are the ‘lucky’ ones whose lives carry on mostly as normal, then naturally they’re going to assume that’s the case for everyone with that illness. But that’s like saying everyone who has migraines only gets them every now and then- we know that to be untrue because enough people have them frequently to say so. If you’re not a doctor but someone who makes decisions about illness, like government officials, you might do a quick google search for info. If nothing really comes up except generic things which also say the person should be ‘fine’, then you just stick me and my illness on the reject pile. Or you look at me and decide I don’t look ‘sick enough’ therefore I’m not and I get treated with the same contempt as the real fakers.

I don’t want to look sick any more than a person wants to go out in a tracksuit every day. People wear nice clothes to create their image, why wouldn’t I create an image of my own? Being sick is not my image. Being sick is not my character. I shouldn’t have to look sick to prove my illness to anyone. So why would I content myself with looking sick if there were ways I didn’t have to?

I taught for a long time while feeling terrible. I didn’t use it as an excuse to get the kids to be nice to me and I refused to put my problems on them. So I got good at keeping my voice level and cheery even when I felt awful. I don’t like being miserable, so I laugh a lot. Even about hospitals. Especially about hospitals, even. I don’t tell people about every single symptom I have when I get them because if I did I would literally be talking all the time- I only mention it when I’m near a breaking point. I don’t like feeling awkward or like I’m ruining everything so I tend to wait until a group makes a plan and then work out what I need to do around it. I hide the physical symptoms I can and lie about the other ones to most people. I’ve got clever at how I manage myself so I can give off the air of ‘having it all together’ even on days when I really don’t (take my phone off me though, and I’m screwed).

But all that doesn’t mean I’m not feeling ill all the time. So I often get penalised for official things or by doctors because I ‘look ok and sound ok’. I’ve said it before- I managed to teach a full day with a cortisol level of 10. Some people go into comas with a level higher than that. I’m sorry I didn’t end up in a coma that day, but rather than blame me because I didn’t look sick enough and it made the doctor’s job hard, wouldn’t it be nice if someone said ‘you did a great job that day. Those kids got their education despite how terrible you felt. You were really professional. Now we’re looking after you’, and acted like a professional themselves?

It takes effort and energy and skill to not look sick. Anyone can fake being sick. People who fake being well despite illness do it because we want a life that doesn’t revolve around being sick. We want to forget for a little while. I don’t want to annoy other people. I don’t want people to worry. I feel annoyed I can’t join in with half the stuff I want to because an illness has taken a lot of stuff away, but I don’t want to feel miserable about the things I can enjoy or be part of. I don’t want to have to prove my illness to people to get the help I need because it causes me problems with my mental health, which feed back into my illness.

Lots of people fake being sick to con the system. But that’s the same as saying all people with blonde hair are thick. Don’t assume the worst in us because we ‘don’t look sick’ according to your bench mark. Some days I do give in and go out (literally) in my tracksuit, but so does everyone. If you’re one of those 100% genuine people saying it, thanks for believing my act 🙂

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

Week 3: Advent Challenge

This Advent I was joining the Bible Society with their Advent Challenge, focussing on the true meaning of Christmas. Here’s how I got on in the third and final week: 

Day 15: offer to do something someone else would usually do. I tried really hard to load the dishwasher for my husband that day- he usually does everything for me because I can’t. However, after watching me do it over the course of about 2 hours (lots of breaks) he eventually said ‘I appreciate the gesture but it would be so much easier if I just did it myself!’. It made us both laugh anyway! 

Day 16: recycle as much as you can. We recycle a lot anyway so this wasn’t much of a challenge. 

Day 17: write a list of 10 things you are thankful for. I enjoyed this challenge and wrote a separate post about it here.

Day 18: teach someone a skill you have. We had some Christmas crackers which had handbells in them for our Christmas meal with friends. I guess I helped a bit with my music teacher background.

Day 19: talk to someone about what Christmas means to you. I’ve actually done this a lot this advent. This year has made me take a step back and realise what’s important, particularly at Christmas. So I ended up talking to a few people.

Day 20: ask someone how they are rather than just jumping straight in with what you want/need. This is actually one of my pet hates- lots of people I know use or exploit people for what they can get out of them and then don’t care in return. If someone does something for me I always thank them and/or buy them lunch/coffee so we can chat. 

Day 21: invite someone lonely over or take them cake. This one was slightly more difficult because I’m probably classed as the ‘lonely’ one in my circle of friends since I can’t leave the house by myself, and we don’t know anyone elderly locally. So I decided to teach our to people who seemed lonely on social media and offer support that way (and virtual cake). 

Day 22: plan to do some of the Bible challenge things in 2017. Coincidentally, I’d already decided I would do this earlier in the week. Now I definitely will! 

Day 23: phone someone who might be alone over Christmas. Again, most people we know have plans over Christmas. But I’ll continue to chat to people on social media. 

Day 24: finish your preparation early and bin your to do list- spend time with family or God instead. I plan on spending some quality time with my husband later today. 

I enjoyed the challenge. Some things weren’t necessarily any different from what I usually do, but it was nice to have a different theme for each day and to be thinking more consciously about the meaning of Christmas. 

Reindeer Post for Post Pals

A couple of months ago, I started following a charity on Twitter called Post Pals. It’s a charity which coordinates sending post or cards or small presents to seriously ill children and their siblings. As part of their Christmas programme, they were looking for people to send Reindeer Post. It sounded quite fun so I asked to have a family allocated to me. Basically, I pretended to be each of the reindeer and wrote a card from them to the family, so they had 9 cards in total across December.

I think it’s a great charity to be involved in because it’s a really simple concept and also can be something fun. Having a chronic (albeit non-terminal) illness myself and having had to stay in hospital in the past and go to lots of outpatient appointments, I find the routines of it at times tiresome, isolating and unpleasant- and I’m an adult. It must be even more difficult as a child, and for the other children in the family. No matter how used to it you are, it’s still hard work, so Post Pals gives a bit of light relief. Plus I know I like receiving post as an adult (that’s not bills anyway), so it must be even more exciting for a child!

The child allocated to me is a 5 year old boy who has a type of Leukaemia and, according to his profile online, he has had chemo every day for 2 years. He must be a really resilient kid! I decided to make some of the cards myself, bought some cards with superheroes and princesses which are the kids’ likes according to their profile and put some small presents in some post.

The first post I sent was from Dasher:

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The second one was from Cupid:

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Next up was from Vixen:IMG_8386.jpg

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The fourth one from Comet:IMG_8546.jpg

Donner came fifth:

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Prancer was sixth:

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Next up, Dancer:

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Eight was Blitzen:

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And the last one was from Rudolph:

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I quite enjoyed doing it from a creative perspective but I also wanted to do something that might brighten someone’s day. I like doing charity work where you know you’ve had an impact but the emphasis is still on those who benefit from it, rather than how wonderful the person doing it is or fundraising money not actually getting to the people who need it and going on advertising costs instead. Post Pals is great for that because anyone can be involved at any age, the children directly benefit and it’s something a bit fun. I’m definitely going to keep sending post to some of the other pals after Christmas as well.

A Rant About Carbs

Today I’m back on my low carb diet after a break at the weekend and I’m tapering to my baseline after illness, which means I’m pretty much like Jekyll and Hyde or the Incredible Hulk in terms of grumpiness. Two things which make me feel slightly more human are carbs and my Hydrocortisone. They don’t cure my adrenal insufficiency and I still have symptoms, but I don’t have to work as hard to keep upright.

I’m insulin resistant, which means my body doesn’t make the most of the insulin it produces and it takes more persuading for it do the relevant converting it needs to. I only kind of understand it. My consultant had me checking my blood sugars for a few months and they’re always normal. I sometimes get shaky, sweaty, nauseous and dizzy which is a different set of shakiness and dizziness than what I get with my adrenal insufficiency, and at that point my blood sugar goes up (but still normal). If I eat carbs, it goes down and I feel better again. Bizarrely, the only time I was technically ‘hypo’, I felt absolutely fine. I was put on metformin for a while, but that made my blood sugar go up so it got stopped. Again, I don’t really get it, but doctors and dieticians tend to look very confused when I tell them those things, so I’m assuming it’s not ‘normal’.

Most people who are insulin resistant are put on a low carb diet. If you lower your carb intake, you should feel better because it should stop the peaks and troughs of the body not making good use of insulin. I’ve been doing it on and off for about a year and I hate it. Hence the rant. It’s not because it reduces my food options, or it’s expensive, or involves some thought to food prep and involves a fair bit of maths. Those things don’t help my general feeling towards it, but it’s because I feel absolutely terrible when I follow it. You know when you’re playing a video-game and the character’s ‘life bar’ is blinking in the corner and it’s about to die and you think ‘quick I need a first aid pack’ or whatever it is you collect to replenish your lives, and you collect one and the character’s lives are restored and suddenly they can run around and have loads of energy again? That’s basically what I feel like when I eat carbs. I literally can feel the bar that represents my x-box ‘life’ shooting up at the side of the screen. My mind clears a bit, it’s not so much of an effort to hold my head up and I don’t feel like I’m walking through tar.

I’ve been told to eat low carb, so I do what I’m told. But it’s frustrating. It’s like having a pain but not being allowed to take any pain killers. You know you’ll feel better but can’t do anything about it. It’s a bit of a nightmare though, because if I don’t eat enough carbs then I get my ‘low cortisol stomach ache’, which is the worst stomach ache ever and makes me want to blackout. It also is a sign of my body struggling and potentially heading towards adrenal crisis, so I have to act on it. Which means I then end up eating a lot of carbs fast to try and counteract it therefore ruining the low carb streak I had going. I have no way of being able to predict any of this and it changes day to day, so I’m guessing. I tried eating salad for meals a few times (I love salad) and ended up making myself really ill, having to updose my hydrocortisone and piling on the carbs so that I can avoid hospital. The other problem is that if you’re constantly feeling run down, tired and lethargic, your body can’t physically fight illness as well. Plus I take steroids which suppresses my immune system. So those two things combined means I’m more likely to pick up normal illness, which then adds to the cycle. Oh and steroids make you hungry. So I spend a lot of time ignoring being hungry and only eating when I absolutely have to. Which is really hard on morale.

I feel more human when I eat high carb. On low carb, I don’t sleep through the night. I’m not hungry, I just feel terrible. On days where I break the diet and eat a lot of carbs, I still wake up but I manage to get at least 5-6 hours of decent sleep, rather than my average of 4. It all makes eating pretty stressful for me because I’m torn between feeling better, doing what my doctor says, trying not to put on more weight which will add to the problem, trying to avoid causing myself other problems like diabetes, and actually trying to have some kind of life rather than just existing as a blinking x-box character. I’ve got a bit of a complex about eating now, even though I know I’m doing all I can.

Low carb is not fun. But my husband has been pretty good at finding us some tasty meals recently. And thank God Nutella is ok to eat!

Image: Google image

10 Things I’m Grateful For

Yesterday’s advent challenge with the Bible Society was write 10 things you’re grateful for. So I thought I’d share:

1. Hydrocortisone. It keeps me alive. 

2. My husband.

3. My friends.

4. Nutella. This sounds a bit random but I’ve had to make changes to my diet depending on which theory the dietitians are running with. Currently we’re back on low carb. But Nutella has always been on the lists of food I’m allowed to eat. And it’s sometimes the only type of chocolate I should eat. 

5. My sense of humour. I’m the ‘get pissed off about it and then laugh about it’ type of person. I don’t think I’d have survived the last few years without my sense of humour. 

6. Tv/Netflix. I watch tv all day and most of the night when I can’t sleep. 

7. Living in the U.K. I’m glad I don’t live somewhere facing civil war. I get free medical care. I had an education. Our laws aren’t sexist. Lots of reasons to be grateful for living here.

8. My house. I have a warm, safe house with electricity and running water.

9. My iPhone. This rules my life. It has all my alarms, reminders, calendar, photos on it. I can talk to people when I want through various forms. I’d be stuck without it because I wouldn’t be able to function. 

10. Creativity. Apart from watching tv I try to challenge my brain by using the creative side. I like being able to think of new ideas and try them out. 

Getting a Haircut 

This might seem like a bizarre post but I feel strangely empowered (if that’s the right word) so I thought I’d write about my haircut! I don’t look the same as I used to before I got diagnosed with Adrenal Insufficiency. I’ve put on lots of weight partly because of the steroids I have to take which have that as a side effect, partly because I was undermedicated for a year so had to eat a lot more to stop myself from passing out which made me put on weight, and partly because I have an endocrine condition so random bits of my body swell up and retain water for no reason at all (like pregnant ladies sometimes have).  I have a lot of skin irritations/sensitivities which means I have to buy clothes in certain fabrics to help manage pain and to stop the ‘I want to pull my skin off’ feeling. I sweat a lot and change temperature rapidly so my clothes have to be specific colours and in lots of layers to help that. I have lots of aches and pains so go for comfort over style every time because it’s not worth it. I still wear makeup sometimes but it depends on if my face can handle it that day or if I have enough energy to put it on. Jewellery can be tricky because of the random swelling- I can’t wear my wedding rings for example. That’s before you add in other practicalities like it’s really hard for me to buy clothes because that in itself is exhausting, I find it hard to work out what to wear somedays so I just revert to things I know work and the fact I spend most of my time in my pjs because showering is too much effort for me to manage. So really, how I look is entirely governed by what I can physically managed. Which, at the moment, isn’t a lot! 

My hair has been annoying me for a while. I like it but it’s thick and curly and if you don’t wash it regularly (I used to do it every day) you end up looking like a yeti. And I can’t brush it because it just breaks bits of the brush off in my hair. So the longer it goes unwashed the more conditioner it takes in the shower to get it unknotted which makes having a shower a bit of an ordeal. My husband has been washing my hair for me recently because I just can’t do it. I really, really didn’t want to get it cut super short because I feel like I’ve compromised everything about me for this illness as it is.

So I asked for some people’s ideas on Facebook and someone suggested an undercut. I thought I wasn’t cool enough to have a partly shaved head so dismissed it, but after a bit of googling thought it sounded like a good idea. Basically, I could shave the underneath part of my head and get rid of a lot of hair but it still looks the same. 

I asked my hairdresser when I went yesterday and she agreed, got a pair of scissors and a razor and we got rid of a lot there and then. I thought I’d be a bit more scared but I was excited. I realised it was the first decision about the way I look that I’d made for about 2 years that wasn’t 100% based on what I *need* to do but what I *wanted* to do; I wanted to keep my curly hair and this was a way I could. 

My hairdresser was great. I recently switched from a trendy salon to a one a friend recommended, mostly because I don’t have a job now so needed to economise. That was also another good move. I had explained to my last hairdresser my issues with showering and my hair but she just looked like I was mad because a) I don’t look sick and b) beauty trumps health in her world. This hairdresser listened to what I said about temperature issues and needing to keep cool in relation to the undercut and then made sure that the water wasn’t too hot and got me water when I started to get hot, all off her own back. That also felt pretty good. 

It’s already a lot cooler temperature wise. I can still tie it back, but when it’s down now I don’t feel like a sheep with a thick coat of wool anymore. And when I tie it back, it’s even cooler. It’s easier to wash and comb. I might not be able to do it every day still, but it means I don’t have to allocate an entire day to recovering after having a shower now. It shouldn’t frizz out as much on days I don’t wash it. And I feel like I made a positive choice for me and what I wanted to choose, not what I had to choose. Which gave me a big boost for my confidence and mentally!

Here’s what it looks like:

Week 2 of Advent Challenge

It’s the end of the second week of the Bible Society Advent Challenge. Here’s how I got on the last week:

Day 8: hold the door open for someone 

This was a pretty easy one, I don’t make habits of shutting doors in people’s faces anyway! Today I held the door open for my physiotherapist.

Day 9: make and give someone a homemade present 

I was actually doing this anyway for some people but I made extra so I could give to my chiropractor. I won’t post a photo though because it might ruin it for people who haven’t opened their’s yet!

Day 10: give your lose change to someone who needs it

I put some coins into a charity box at the end of a till. I think it was for a children’s charity.

Day 11: smile more

I was not having a good day and felt pretty rough so this one was more of a challenge than a usual day would be. That’s mostly why I picked that one from the options given to me that day. But I managed it!

Day 12: talk to someone you see often but don’t speak to

I don’t go out a lot by myself so I don’t tend to see many people who I don’t already talk to. But I did have a very brief conversation with our neighbour that day while she was going out to the car.

Day 13: call someone you’d normally speak to online 

I don’t talk to my dad online but I usually text rather than ring. So I rang him oh that day. 

Day 14: out chocolate through someone’s door. 

I’ve bought the chocolate, I just haven’t managed to get to the person’s house to put it through their door yet! 

Year in Review

It’s the time of year where everyone starts to make proclamations about how amazing/awful the past year has been and start to make New Year’s Resolutions. I’ve seen a lot of Facebook memes about how 2016 has been ‘shit’ and can we ‘just forget about 2016’ because of things like Brexit, celebrities dying, other global events etc. That’s not quite the same thing. A celebrity dying has very little impact if any on the personal life of an individual. And things like Brexit and the US Presidential campaign affect everyone differently. So those memes, in my view anyway, are pointless dramatics. When most people are reflecting on 2016 personally, it tends to be the positives that have happened to them e.g. marriages, jobs, children.

This post is partly prompted by a conversation I had with my GP yesterday and also the fact that Facebook keeps insisting every day that I share my ‘Year in Review’ video. And if Facebook tells me to do something, I obviously should do it(!) This time last year I got signed off sick by my GP and in the end never went back to work. At the time, she said ‘we’ll review in the New Year and hopefully get you feeling better in 2016.’ Ha. That didn’t happen, but we were both feeling hopeful- I now had an endocrinologist who was trying to help me and not just fobbing me off. I saw her yesterday and she said ‘we’ll review in the New Year and hopefully 2017 will be your year’. So I told her she said the same thing last year and that failed.

But it made me think: how has 2016 been for me?

  • The first two weeks of January I went to a medical appointment every day of some sort. In varying hospitals/practices. I think that sets the tone for the year quite nicely!
  • I got Insulin Resistance and Osteopenia added to my diagnoses. Basically I’ve got the bones of a 60 year old and I’m probably going to get diabetes at some point.
  • I got discharged from the Regional Severe and Brittle Asthma Team- good news!
  • I went on holiday with my husband
  • I got put in resus twice. I called a few ambulances. I was admitted to hospital a few times overnight/for a few days and several more as a day patient. I had lots and lots of horrible tests. I was used as a teaching case a lot.
  • I stopped working in my career as a teacher
  • I had to stop playing wind music completely
  • I admitted defeat and started referring to myself as disabled. And got a blue badge. And eventually started using a wheelchair.
  • My brother’s baby died.
  • I stopped leaving the house by myself because I kept getting ‘stuck’ when I did and ended up in hospital or having to get people to rescue me.
  • I was a Best Person/bridesmaid for my friend’s wedding and went to her Hen Party
  • I went to the cinema a lot. And some concerts
  • I started blogging
  • I bought a sewing machine and started trying to learn how to do that too
  • I went to a couple of friends’ weddings and a baptism
  • I started my 30 Things Lists
  • I started trying to learn Spanish again
  • I took part in a few monthly challenges like blog and photo challenges. Those were quite fun.
  • I had some good days out with friends and my husband
  • I started going to a monthly church group and unofficially took on the role of ‘chief laminator’
  • A few friends showed their true colours. Both in a positive way and a negative way- I know who my real friends are now put it that way.

That’s pretty much the whole year, aside from meals out, day trips and visiting friends. Or, if there’s something I’ve forgotten, it’s because I was feeling so ill I have absolutely no recollection of it. So please remind me of it! 🙂

My GP said a couple of times ‘but you’re only 29….’ and I have to admit I did lose patience and said ‘yes, you want to try being me’. She was saying it because she wants to help, but if you look at my situation on paper, it’s pretty depressing. I’m basically an old woman in a young person’s body. I also seem to be an anomaly- my body literally does the opposite of what it’s supposed to, no-one can really work out why yet, but the bonus is it’s somehow keeping me alive.

Other people can talk about work achievements, getting married, having a baby etc. Do I actually have any achievements from this year? Not really! To be honest, while I can’t feel positive about things I have ‘achieved’ this year, I do feel I have got a lot out of my life this year by what I have learnt than in previous years:

  • I must be pretty resilient. Like I said, despite confusing some specialists, I’m still alive. I still get up every day and try to make the most of it. I don’t use my illness as an excuse to do or say whatever I feel like, like some people do. I care about other people and their lives and don’t say things like ‘stop talking about your job/baby/life because I don’t have one’ like other people have said in years gone by when they’ve had a horrible year. I care about people and their positives and I want to hear about them. If nothing else, I think it’s important that I acknowledge those things as achievements this year- some people with illness act like the world owes them something. I don’t want to be like that.
  • Ultimately, I can’t change people and their thoughts of me. If they’re not going to make the effort, I don’t have to either. If they pass judgements, that’s their problem, not mine.
  • I like having things planned out, but sometimes you just have to go with it. Safe to say, this year did not go as I planned. I think the hardest thing this year has been it has been so uncertain. I’m still in the working it out/diagnostic stages and it keeps changing, which means I can’t ‘get used to’ my illness fully and work with and plan around it. While it’s tempting to google everything I can about things that doctors say, all it does is waste energy and causes stress, so I’ve had to learn to not to.
  • Things have a way of sorting themselves out. As Newt says in Fantastic Beasts (good film by the way), if you worry about it, you just suffer twice.
  • You can’t control the situations life throws at you, but you can actually control how much suffering they inflict on you. I’m now a lot better, albeit by no means perfect, at letting things go. And I really like meditation- that’s an achievement actually- I meditated every day for a whole year!
  • People view health as either you are healthy or you’re not. That’s not how it works, it’s a scale. I think if more people realised that, and the fact that life is temporary and can change quickly, people would live a lot more in the present rather than wishing their lives away on the next big achievement.
  • People view life as a series of those achievements and plaster it all over social media. Jobs, children, amazing parties, holidays…anything that gives some kind of status. I wrote about it a bit in this post. While those things might enhance our lives, they’re not what defines us people. I don’t want to be remembered as the girl who had amazing holidays, I want to be remembered for my personality and qualities as an individual. No-one has their social media check-ins written in their obituary (although I wouldn’t be surprised nowadays!)

So 2016, on paper for me, looks terrible. Realistically, I won’t be miraculously healthy in 2017. But was it a bad year overall? It wasn’t great health wise, but thanks to my failing body and my 60 year old bones, I’ve learnt some lessons that most people my age won’t learn until they’re actually 60, by which point it might be too late. My Facebook year in review video is pretty boring, but the things it can’t show are the moments where I’ve laughed with friends over non-Facebook worthy things but fun things none the less, the small things I appreciate which I didn’t before, the people who have really been there for me by keeping my morale up every day and the way my outlook on life has changed this year. By all means people should share their achievements and accomplishments and I’ll be happy for them (genuinely), but it should be because they’re important to them, not because they feel some need to compete with the rest of the world.

As for New Year’s Resolutions? Let’s be honest, most people break those by the third week in January anyway! 😉

 

Image: Google Image

Festive Things

Last week I would class as particularly festive and I felt like I was properly getting into the Christmas spirit. I love the build up to Christmas anyway, but if I wasn’t sure Christmas was on its way, I definitely was by the end of it! 

Carol Service 

A friend, his mum and aunt and I saw the Westminster Abbey Choristers perform a lunchtime carol service at Symphony Hall. Apparently it was the first time they’d performed out of a church or abbey setting. The boys are all aged between 7 and 13/14 and performed carols both unaccompanied and with an organ. The hall was almost packed and the boy who started the concert off with a solo of I Saw Three Ships must have only been about 9 and sung beautifully without any backup from organ or the choir- that must take some nerve! They sang traditional carols in English, Latin and German and there were a couple of congregation carols as well. It was a really lovely hour!


Christmas Market 

Symphony Hall is really close to the Birmingham Christmas Market so we had a quick wander through part of it. I’ve been to the market most years since I’ve lived down here so it’s something we do every year. It wasn’t too busy because it was mid-week but at weekends it can be packed. 

Christmas at Blenheim Palace

The next day, my husband and two friends went to Blenheim Palace to see the Christmas Trail. Each garden has been designed by a different artist and has a different theme which comes alive at nighttime through different lights, sounds and fire used. The photos I have won’t do it justice but it was incredible. We got there about 6pm when it was properly dark and spent about 2 hours on the trail, but we did stop to look, sit down a lot and eat toasted marshmallows. My favourite was the Electric Waterfall which was essentially a slope covered in colour-changing lights: it was pretty hypnotic! Afterwards we had (posh) hot dogs and pulled pork rolls which were very good! There were also things like mulled wine and waffles available as well. 





A really good week! Going to the market and a carol service are definitely things which I consider essential to feeling Christmassy every year. What are yours?