Young Spoonie

An informative and personal chronic illness blog by a young-at-heart spoonie

a little vent because I feel like writing 

This post is going to be really unstructured, but due to my social awkwardness, I dislike venting to my friends much about things. Especially about my body and its bizarre functioning. So I’m just gonna write stuff here.

Today was okay, but definitely a bleugh day. That being said, I am incredibly appreciative that this type of day is a blurgh day for me, as during the difficult last 5 years of my life, I wouldn’t have even bothered acknowledging this as bad because there were things happening that were so much worse. But anyway!

It’s a bad body day today. I’m on day two of my uterus-shedding which is always the worst day of nausea and owwies of the month, and of course that also means POTS is yelling at me more than usual with some extra chest pain, dizziness and difficulty breathing. Also I am worried I’m getting a cold because I am extra exhausted and lethargic today and had a minor sore throat and sneezing, particularly at work it seemed to occur. Oops. To top it off, my mother has been dishing me her usual stress – luckily nothing too terrible, but enough to really push me off my rockers. She has been kind in other ways though, so I’m not holding it against her this time round. I’ve been abnormally moody all day, even though a few things I’ve had to do today were unpleasant, the tasks weren’t enough to cause me to start crying sporadically like I have been. Am blaming that one on hormones! 

I was meant to finish the day catching up with friends, but in addition to physical fatigue, my self-esteem got so low that I decided that I wouldn’t be missed and that I didn’t want people to see my face. I’m 100% aware of the irrationality of that statement but due to the circumstances of today, I’m forgiving myself for letting my ridiculousness get the better of me. And then because I wanted to see my friends, I sobbed for ages for deciding not to go. Aye logic, where are you?

To top it off, I haven’t been running in over a week and I’m gonna get chronic fatigue again if I don’t get back running every day asap. Having a sick pet, sleeping in and hot weather have been a major cause of that. Life is good, but a disability and chronic health condition make it difficult for me to cope a lot of the time. Knowing whether to take things away and chill out, or push on and stop being lazy can be really tricky sometimes! I need to talk to people before I ruin my year and hopes and goals over and over again. I wish I could do more than what my brain and body seem to be capable of 😦

Okay no more negative nancy allowed now! It’s good to be honest and say exactly what’s on my mind sometimes, but being realistic and structuring things is even better. POTS, you aren’t going to take over my life this coming year. 💪🏼

Advertisements

Achievements

Achievements, and most importantly;  being able to recognise them, are super important when you have a chronic illness. Big or small, achievements are the signs that something is going right. They boost your motivation to keep going, and help you get over disappointments. The awesome thing about achievements is that even when life is going really badly, if you look hard enough, there’ll still always be an achievement, even if it’s not immediately obvious. For example,  the fact that you’re alive today is an achievement. In prey animals like rabbits or insects this is a marvellous achievement, but for those humans with a low risk of death it’s nevertheless an achievement too; you weren’t struck by lightning or killed in a car crash, good on you! It’s an achievement you’ve made it to this day, seeing as life isn’t something that is 100% guaranteed to us.

On the downside though, having a chronic illness often makes you feel as if you are not achieving enough. Particularly, a sudden onset of sickness from a previously well or decently-managed life can really throw you in the dumps and make you feel a little hopeless, that you’re being unproductive or falling behind everyone else.

Goals

For me personally, up until the age of 14 I was a kid who was a high-achiever and always expected to be achieving things, and receiving recognition and awards all the time for achievements. The next six years of my life up until now have all been really difficult ones in some way, and throughout it all I have always expected myself to be achieving more than I was. I quickly had to learn not to put as much pressure on myself to be succeeding in my goals, however being someone with consistently high personal ambitions, I still wasn’t really able to allow myself to be more flexible with what those personal goals were. Instead, I would set them a bit higher than what I realistically was able to achieve, and just learnt to accept that I was always going to be one of those ‘shoot for the moon but landing amongst the stars’ people. That isn’t necessarily a bad thing, as it’s always good to encourage personal growth and push yourself a little bit in life, but over time I have noticed I have this attitude that something is always going to ruin or hinder my life goals, and that I’ll never be able to fully achieve what I yearn to do.

I don’t want to be dissing the idea of living by goals. Myself, nothing would get done in life if goals were not in place all the time, telling me what to aim to achieve each day. But the concept of either failing or succeeding in something isn’t overly helpful in terms of your self-esteem and sense of achievement. If you’re an awesome goal-setter and manage to set ones that you realistically achieve 80% of the time and you’re happy with your progress in life, then you’re in an excellent position. Same goes if you’re not a fan of making structured goals but are still pleased of what you achieve in life. But if you’re too afraid of setting goals for risk of failure, or you’re like me and seem to set them too high all the time despite initially thinking (or hoping) that they’re realistic, then something needs to change. What that is, I don’t really know. Hence why I’m making this post to work this out in words that have some sort of logic to them 😛

There are many factors that go into what can be achieved, what is actually achieved, and what your sense of achievement in life is like. Goals are great in the sense that they give you structure as to what would give you a healthy sense of personal achievement, but also they’re generally quite specific, whereas what happens in life and how much control you have over it isn’t usually very specific. This is amplified much more when you have a chronic illness with unpredictable symptoms, and the level of control you have over small specific things in your life varies every single day.

Some of my suggestions for dealing with disappointment from not feeling like you are achieving enough in life:

-Focus less so on what goals you have been successful with, and more so on what achievements you can count in a single day. Base your sense on achievement in life on what you have achieved, rather than whether you do what you want to achieve in the future. Make to-do lists primarily with the aim of providing structure for the day and not fully completing the list,  and rank your sense of achievement based off whether you were proud of your progress given whatever challenges were thrown at you that day.

-Remember to count relaxation time as an achievement! Completing chores, exercise, study and work are obvious achievements, but particularly spoonies or stressed people who need to rest their bodies, anything that’s relaxing or good for your health is an achievement.

-Focus more so on daily achievements than long-term achievements. This one is mostly for people who have an inconsistent amount of control over their lives, in particular spoonies and people going through long-term crises. Ranking your level of achievement over a long period of time can be daunting if it didn’t turn out how you originally wanted it to, and can cause you to have large regrets over things. You can only achieve things in life with the knowledge, tools and resources you have with you at the current time, and you shouldn’t blame yourself for not having access to those things at a particular period. It is easier and less daunting to improve on a small short-term goal the following day than to choose to improve on a larger long-term goal.

-Don’t compare what you have achieved with other people’s achievements or opinions on your achievements. Everyone has different circumstances, ideas of what they want to achieve and abilities to do things, and a small achievement for one person may be a large achievement for another person. Celebrate the same with your sister who just graduated from her degree as you would with your friend who gained the courage to leave their house for the first time in six months. (Within the preferences of the achievers, of course!)

-Aim to live in the present. This one for me in particular is quite difficult, as I get a lot of my enjoyment about dreaming about the future, especially on rough days. But learning to love yourself and the way you are able to handle your day-to-day life and its challenges is overall going to improve your enjoyment of life, and enable you to see the bright side of whatever new issues that may be thrown at you in the future. Don’t ignore the future completely, but it is not your true experience of life, it can only be imagined. Your true experience of life is happening now, and it’s never too late to change it!

-Don’t worry about it! This is easier said than done for someone who worries about their level of achievement in life, but if you are not that type of person and are going along fine, there’s no need to start being concerned that you’re not achieving enough. There is no rule in life that states you must always be achieving things, as long as you’re happy and healthy, you’re on the right track 🙂

Life & Health Update no. 3 – Back from blogging hiatus

I’ve noticed I seem to only reflect on my life during times where I’m not doing something really important (like studying). Which isn’t really ideal because when you’re doing stuff in life is when you probably should be doing the most small reflecting of things, in order to do the stuff better! Anyway. Basically I started uni again in August, and I finished it again a couple of weeks ago. I have my uni results back already, and they’re pretty decent considering a few little blips this semester, so that’s all good. I achieved the simple goal I set for this semester which was to rest myself and get through uni by studying part-time, which I succeeded in. POTS symptoms have definitely improved, not by a significant amount, but I for the first time didn’t set a target of where I wanted to be at, which is probably a good thing. Overall I don’t feel like I have achieved much this last six months, but I definitely haven’t gone backwards either, and I’m slowly but surely improving.

In terms of the chronic fatigue I was suffering from when I first started this blog, it’s better. I wouldn’t say gone completely, but life is definitely more manageable. Luckily, my hip has improved to the point where I am able to walk upstairs and run again, which has allowed me to exercise much more often and more intensely, and has been a huge blessing for me in allowing me to gradually increase my energy levels. I have a new goal that’s really helping me to stay motivated, and that is that I wanna go on exchange in the second half of next year! I have enough energy now that I am able to work part-time, and am actively looking for a job right now. Am currently waiting to hear back from 3 interviews and I have another one on Monday – arrgh job-seeking is truly unpleasant. I’ve been rejected a number of times now, but I have been and still could be in a much worse situation in life, so I’m counting my blessings.

It is still awhile until uni starts again in March next year, so I’ve only set some rough goals for this summer. As I’ve learnt this year that my body cannot be pushed and that my progress is slow, I’m not going to badly wish for these goals to actually happen, however it’s good to have something to aim for. Basically, the plan is to really increase my fitness and energy levels this summer. I want to soon be able to run for 20 minutes non-stop without feeling dizzy. Which will be a little hard as in order to prevent hurting my hip, I have to take long strides when I run and therefore cannot slow jog! But I’ll get there. Also next year I want to be able to study 4 subjects at uni, which is going to be extra difficult as I will need to work part-time, too. I originally did NOT want to work part-time at all during uni, but sadly I couldn’t obtain a Christmas Casual position, so that is what I’m left with. If I can’t do 4 subjects I will be able to go down to 3, but I’d really rather not as during my fourth and final year of uni, I only want to study 2 or 3 subjects per semester, and want to make that as easy as possible for myself. Socially, I’d also like to join some uni activities and volunteer. I hope I can get some courage to do that.

Here’s to a summer of good fitness and health! (And hopefully a job too). And best wishes to everyone for a healthy and enjoyable summer/winter break!

Motivation

Motivation is something you need a constant supply of in life, no matter what you’re doing, in order to get things done to a decent standard. Often, when our level of motivation lowers, our work ethic also lowers, and therefore negative consequences come into play: such as your manager at work getting annoyed at you, lower than your usual grades on assignments/exams, relationship and family issues, less time to do fun stuff, and the biggest one being stress. Managing chronic illnesses also requires motivation, otherwise the obvious consequence is that our bodies start showing worsened unwanted symptoms. The thing with chronic illnesses though, is that often there isn’t an obvious achievement at the end, as symptoms can be unpredictable or circumstances are out of your control. This can make finding motivation to keep doing everything you need to do extra difficult.

Recently I was knocked out of my routine for a week and doing everything I usually do to manage POTS was impossible. I had an inevitable setback, naturally, which couldn’t be avoided. However, I found that my original motivation before my illness-management routine changed was lower than it was originally, and even though the opportunity to maintain good health was there, I didn’t make the most of it and am therefore suffering from it.

Why? Well I’m still not 100% sure. I think it was partly because I didn’t feel sick enough that I couldn’t do the very basic necessities of… well doing nothing of great importance seeing as I haven’t had any commitments for 5 weeks. In essence, I hadn’t actively planned out the goals I had written for myself a few weeks ago. Mistake no. 1: Never forget to write a goal timeline (not just one in your head), especially if you’re forgetful and disorganised like I. Also another issue I think that may have contributed for me was environment-related anxiety. Even though I don’t have bad anxiety, my mood and enjoyment for life deteriorates when I feel hopeless and trapped about certain things. Anyway, that’s personal and out of my control for now.

I think there are a lot of reasons we get de-motivated, and it’s all unique from person to person.

What to do when you’ve lost motivation for managing your chronic illness

  Just like when any issue pops up, there are a few steps you gotta do:

  1. Acknowledge and accept the issue
  2. Find a cause
  3. Fix it!

Acknowledgement. You’ve skipped taking your medicine. You haven’t exercised. You haven’t prepared your meals for the day. You’ve knowingly put energy into something you shouldn’t have and now you’re too exhausted to get dressed. These things happen to everyone – despite any consequences, you’re not going to die, therefore you’re going to be okay. The most important thing to do once you’ve accepted the situation you’re in is to not punish yourself for it, you’ve done it for a reason and you need to be kind to yourself while you figure out why, and forgive yourself. If you have a mental illness or you’re very sensitive, be extra kinder to yourself.

In terms of finding the cause of your loss of motivation, that’s something you’ll have to work out for yourself. Maybe someone has said something or something has happened to you and you’ve had a general self-esteem blow, or you’re simply exhausted from a lack of planning and organising important things properly, or maybe it’s something completely out of your control like medication side effects. If you can’t figure out what’s caused this motivation loss, don’t stress, it won’t last forever.

Fixing it – if the cause for your lack of motivation is something you can fix – great. If it isn’t or you’re not sure what it is – no worries. Rather than making a list from things from my head, I found this little graphic that pretty much sums up how to get motivation.

If after doing these things you’re still stuck in a rut and life is seriously kicking you in the face, take a deep breath, and get some support. Whether that’s from a friend, your mum, a counsellor, exercise physiologist, helpline… you’ll be okay. Sometimes all you need is a reminder from someone else and a friendly kick up the butt. Slow things down for yourself, maybe it’s necessary to drop a commitment. Make some time just to focus on your health and relaxing and nothing else, for at least a day. I personally am still learning how to do this – I’m choosing not to work or study full-time for the rest of this year to focus on health and having a healthy dose of motivation that isn’t impacted by everything else. Do what’s best for yourself, and don’t worry if you don’t get it right straight away. Managing chronic illnesses is a process of learning, and changes alongside the symptoms you have.

Take care of yourself and your body! Best of luck staying motivated 🙂

Life & Health Update No.2 – the unexpected and life lessons

(Originally posted this over a week ago on 9th July but made it a page, oops)

I started this blog about a couple of week ago now posting nearly every day, only to completely stop for 10 days. Typical of me. Here’s what happened though in those days (in brief)- My aunty became quite unwell and I ended up babysitting my 4-year old cousin while my mum helped her sort things out. I went to their house in the country to look after him for 5 days, came back home for a day of rest while mum took her home from hospital and back to our house, then I continued to help look after him for another 3 days (with a little bit more help thankfully). What made this experience the most stressful was that it was unplanned – I had 10 minutes after deciding I would accompany mum on the trip to pack. As I have chronic fatigue at the moment, I wasn’t sure how the heck I was going to cope; as spoonies are well aware, usually heaps of planning and preparation goes into doing anything out of the usual routine to manage symptoms. I think what bugged me up was that I was only starting to become well enough again to exercise every day and exert some sort of control over my life, but my routine disappeared completely and I couldn’t focus on anything else but looking after this special-needs child. (I’ve got to say a total KUDOS to spoonie parents, especially single parents – you are super stars).

Health-wise, I coped better than expected. In a recent blog post I mentioned that I need to do more activities that involve moving such as gardening in order to help my energy re-conditioning, well babysitting certainly comes under that category too. I didn’t physically exert myself either which was helpful. I think the main thing was that I felt tired from the lack of pacing activities, stressful circumstances, and having no alone-time. It was a lot better when my aunty and cousin came to our house as I could pace things more easily, however the lack of planning of when I was to babysit was difficult and I still couldn’t get back into my routine.

Today I physically feel the worst that I have in awhile now, partly because my mind has lost its awareness of other people and now all it is in relax-and-release mode… which is good and bad. Yay?
Overall, the last 10 days weren’t all bad, I got to see my extended family which doesn’t happen very often, and even learnt some life lessons and things about myself from it. (I love learning things)!

The first was that I certainly achieve more things when other people are around to watch me, or when I’m responsible for someone. Which is a little disappointing really, but I s’pose I can’t help that I turn into a lazy mess on my own. To try and help with this, I like to go to the library to study, and record myself on video whenever I need to do anything productive like cook something, clean up or study, so it seems as if someone is watching me. This is also a little difficult as I enjoy being on my own, even though I am unproductive. Sigh. Why must balancing things be such a difficult thing to get right? The other thing though is I reckon provided I have financial security and support, I reckon I’d be an excellent mother if I ever decide to become one, as I would get things done.

I also learnt the importance of family. Yeah, they may not be the people you would choose to be in a room with, but they’re going to be the only people in your life who’ll still be interested and willing to help you out if you haven’t seen each other in 6 years. No matter how weak it may be, there will always be a permanent connection to your family, unlike friends and significant others, so it is worth keeping in contact.

Anyway, here’s good luck to me and all other spoonies on holidays at the moment, who are trying to establish a routine and management of good health. (:

The perks of being a spoonie!

What better way to celebrate the happy rainbow banner on the USA’s love day than to make a positive blog post. 🙂

Let’s get the ugly out of the way: like looking directly at a chronic illness. Hospital visits, transport/medication/appointment costs, never getting comfortable, most people get the idea. But once you have a chronic illness for some time and your life has been changed and your treatment is kind of working for once, you think to yourself, ‘I’ve actually done pretty well at this.’ I think it is inevitable that whenever someone goes through something difficult with lasting effects on their lives, such as a major relationship break-up, medical conditions, death of a loved one, mental illness etc,  in order to cope with the situation, they need to see things from a different angle. Things that are difficult are not necessarily all doom and gloom. Every human being undergoes brain plasticity; we all have a potential somewhere to find ways to deal with difficult situations.

Along with learning to manage chronic illnesses, our brains also learn or improve at some special qualities, too.

https://i0.wp.com/rlv.zcache.com/happy_rainbow_postcard-r63db9652854d4bb78bef5a70deb6aa0f_vgbaq_8byvr_324.jpg

Compassion and empathy are a pretty common combination of qualities that spoonies are good at. It’s human nature to judge someone based on what they see, but it takes an educated person to realise that it’s not all what’s on the surface, such in the case of invisible illnesses. Someone in a wheelchair who may be appear to be able to walk perfectly fine may be in a lot of pain later when they’re tired, for example, and as a spoonie, we tend to less assumptions about people than others do, as we know very well that things are not always what they look like. That person in the wheelchair may seem lazy or attention-seeking to some people at first glance, but being compassionate means to understand that people have different needs, even if you don’t know what they are. Social benefits of being a compassionate and empathetic person include being able to trust people easier and having others trust you more easily and appearing more friendly and approachable.

Often when you lose something/someone important to you, like a person or your ability to walk without pain, after awhile you start to dwell less on what you’ve lost and focus your attention more on what you still have, in order to cope. Which makes gratitude a quality that many spoonies strongly possess as well, as they have often lost a lot of normal body functions. Some of the things I am grateful for are that I can still walk at all, that I can still sit on a chair and feel comfortable a lot of the time, and that I can still attend university. Having a strong strength of gratitude shows that you are a respectful person, as you better remember to show appreciation for things and people you may have taken for granted once before, and people will enjoy doing you favours as they know you will be grateful for them.

Resilience is another quality that long-term spoonies often have a good abundance of. Being resilient doesn’t mean that you disregard small issues like having a cold or headache and that they shouldn’t be complained about, but rather you’ve gotten used to having to cope with larger issues so often that you’re pretty good at coping with smaller ones. The benefit there is fairly straightforward- if you you’re good at coping with issues, you stress less, you can help other people learn to see an alternative side to issues, your chronic illness symptoms don’t feel worse as a result of stress hormones, you can concentrate on problem-solving more easily, etc. I have noticed I have become more resilient in the fact that when I do something wrong or someone tells me I’ve done something wrong, I take it less personally and stress less about it as I know I’ve done all I can with my current abilities.

For me personally, the biggest thing I’ve learnt having being diagnosed with POTS is that I can better focus on what’s important. I have only started being treated for POTS for 12 months now, and therefore am still learning and finding ways of coping. As I’m still recovering from the bad habits that an anxiety disorder left behind, POTS has helped me worry less about things that aren’t important, as I have constantly been focussing on important tasks I have to get through in order to live. For instance, I have worried less about how my chronic illness affects other people and what people tell me I ‘should’ be doing to be a better person, and focussed more on just doing what I know what works for me to live my life with as few symptoms as possible.

There are also some smaller, short-term perks of being a spoonie that I’ve noticed, so if you’ve just been diagnosed, you don’t have to wait too long for something good to happen 😛

  • Alternative arrangements at university/school/college for doing assessments can mean that you can relax more, and stress less about getting your work done in timed assessments than other people.
  • Being able to apply for a greater variety of scholarships due to having an academic disadvantage at school/university.
  • Extra support to find jobs suitable for people with disabilities by a variety of organisations.
  • Having more time to mentally relax and catch up on TV shows and books when you’re too sick to be functional.
  • Being reminded how much your friends care about you when you tell them about your chronic illness, and when they help you out and ask you how you are going.
  • Finding a community of people who care and can relate to what you’re going through. Thank you internet for existing for people with rare chronic illnesses ❤
  • Feeling pride for looking at what you are achieving despite the challenges of your chronic illness.

And for anyone out there who still feels really low or is struggling to deal with their chronic illness, it’s okay. Try not to feel pressured to be positive and happy about it, especially when well-meaning friends and family keep telling you to see a bright side. To not acknowledge that there are many negatives about chronic illness is unrealistic, like there is to say that absolutely nothing positive comes from chronic illness. I found a good article here that helps with being realistic. Even though self-management of chronic illnesses is important, surrounding yourself with a support team of family, friends, support organisations and health professionals is even more important, so they can help pick you up when you can’t.

Drop it like it’s PoTs

This is excellent advice 🙂

Potsitivity

What to do when you know you need to sit/lie down asap in public.

You’re in the supermarket, and you’ve been deciding over which magazine to get for a couple of minutes now.. that’s when your heart starts beating fast, and it’s not because Zac Efron’s on the front cover of your favourite magazine. Your feet and hands are purple and you’re starting to feel out of breath. You need a lie down. But you can’t, you’re in a supermarket! What do you do?

This has happened to me more times than I can count, but I’ve found lots of ways of coping and preventing it when I know it’s coming.

Here are some quick tips on what to do if it happens to you:

1) Squeeze your hands and toes tightly. The reason you feel funny is because your blood is pooling (resulting in purple feet) By constricting your…

View original post 327 more words

Socialising and friendships – my personal analysis

This isn’t fully chronic illness related, but just an analysis for my own use of how I socially function. Obviously chronic illness affects this as well, like it manages to affect everything in a spoonie’s life… I talk about this in the last paragraph.

I am an introvert. A plain, old introvert. A lot of the assumptions of being introverted is that one is more shy than chatty, which is what I originally thought it meant, which made me a little confused as to whether I was introverted or extroverted as I’m not overly shy. However, introversion is less about simply being shy/socially hesitant, and more that you are concerned with your own thoughts and feelings than those of people around you. That is also a bit ambiguous, as that makes it sound like introverts always think of their own interests before others’, which isn’t usually the case. My favourite definition of introversion is that socialising can cause introverts to become mentally exhausted a lot quicker than extroverts, which of course is on a spectrum, like every personality trait is. Introverts essentially need regular alone time to focus on their thoughts and feelings (or in my opinion, just for mental resting), to balance out social time. I like to compare it to a work/play balance – even if they enjoy the work, some people just function better with smaller amounts of work and lots of play, and other people can still be perfectly functional and content doing lots of intense work. Of course within reason; everyone needs some sort of work/play balance, just as most extroverts need a bit of alone time as well.

Anyway, that was mostly there to give subtext that I think of my own brain functioning A LOT. I’m not an overly social person, so I have time to analyse everything. Possibly over-analysing…

Like the average person does, I have a few social issues or ‘flaws.’ Introversion isn’t one of them, I should add. Nothing too major, but I want to catch them early before before chronic fatigue socially isolates me even more, or they become worse for other reasons.

Meeting people

I never in the past have had much of an issue making friends, which is a bit of a surprise due to some traits I have. When I first meet people, I react entirely based on what I sense this person is like at first impression. If I feel inferior to someone (like a teacher or manager or someone on a higher social tier to me), I usually avoid going out of my way trying to start light conversation with them, unless we are by ourselves together, or it could seem rude not to. Or, unless they come across as very friendly, open and/or initiate chit chat with me first. If I don’t perceive them to be superior to me, then usually I come across as quite friendly, and I do initiate chit chat/light conversation. Whether or not the conversation is maintained depends again on how they respond, like what I assume most people do- if the person doesn’t talk much back to me, I presume they’re either not interested in talking to me, and I discontinue the conversation. If I think there’s a chance they are a shy person, I often attempt another conversation with them later over a topic I feel is easy to talk about. I do that by mentally preparing questions and comments that could have a high potential of getting a response, often in a way that makes me seem a little vulnerable to judgement, like by saying something silly, hopefully showing that I am not going to judge them and that I am not a scary person. On the other hand, if I believe the person didn’t respond to me well because they weren’t interested in me, I usually just accept that as it is and don’t tend to initiate conversations with them again. I’m not someone who can continue a conversation with anyone, no matter how well I know them or if I usually feel comfortable with them, if they don’t give me good feedback straight away. I am a person of senses, I think based on sensory information like facial expressions, emotion, physical movement and tone of voice.

Making friends

However, this is where a few problems can arise. I only initiate casual conversation in somewhat restricted contexts, as listed above. If someone is tired or interested in some things I say but not the particular small talk that I started with, I interpret this as they are not interested in small talk with me full stop. As small talk/casual conversation is how you make friends, that makes me erase people out who could actually be potential friends. It’s not like I take it as a big self-esteem blow, as I understand that not everyone is interested in talking with me, but more so I put them in the acquaintance category automatically because I don’t want to have a repeat of me starting and failing at small talk with them again.

Another issue I have is with the superior/inferior people thing. I used to be a shy child so I never initiated conversations with anyone, though was able to improve this as I got older to initiating necessary work-related talk with people superior to me, and both necessary conversation as well as chit chat with people on the same social tier/socially inferior to me. But this also limits who I can be friends with unless the ‘socially superior’ person initiates conversation first. I have this idea firmly engrained into my head, not sure where it started exactly, but that I am strictly only to have professional conversations with anyone like tutors/managers/coaches, and not to initiate casual conversations, such as simply asking how they are, or saying how I am. Which hasn’t really been an issue until more recently in my life, when I went to ask for references for the first time and realised I didn’t know many people on a more personal level who could give me a reference, or who I was comfortable enough to ask for a reference or general advice from.

Maintaining friendships

This one has been a little bit tricky for me as I have moved around a lot, and for anyone it is difficult to maintain friendships with people you stop seeing regularly. I believe I have been very lucky, as being both introverted and someone with who lives in the present based on sensing things, I find it difficult keeping up with and remembering to talk to people I don’t see very often with my own eyes or ears (which is why I appreciate facebook for helping a little with this). I am also hesitant to initiate catching up with someone who I haven’t received feedback or a response from in awhile, in case that person has lost interest in me. Yet I am lucky as I have had friends who obviously liked talking with me, and have helped with giving feedback that they’re still interested when I have had to have move schools/move to another town.

I have been lucky that my friends from my final school have been especially good at this, and also that a few of us have things in common such as weekly sport, to see each other regularly. But in the real world after school, there doesn’t seem to be much opportunity to have casual conversations with the people you see regularly at places like work or uni classes, or you don’t see them often enough to get used to socialising with each other. And because I am forgetful, introverted, socially hesitant and bad at initiating things, it is gonna be a lot harder for me to make friends in the future. I can’t change how I respond to sensory info, and I can’t magically improve my memory or stop being introverted, so the only thing I can do to get over this is to expand my friend criteria. I need to take more risks, expect that some people may be annoyed that I attempted small talk with them again, but with the aim that most people are appreciative that I’m attempting to talk to them, as awkward as I am. I need to be less self-conscious of what I say, and trust that most things I say aren’t offensive or annoying.

Socialising and chronic illness

I also need to get over telling people who I’m not comfortable with on a personal level that I have a chronic illness, and to explain that it causes me to be extra awkward in trying to find the right words to say, being cognitively slow and remembering things. I find this especially hard with people I see as ‘superior’ to me or people I don’t know well such as uni tutors, which is an issue. I’m lucky in the sense that despite POTS being an invisible illness, it is a biologically tested physical illness that has proven results that it exists (in the case of blood pressure/heart rate), which takes away some of the stigma that mental illnesses get, for example. It’s okay to have a weakness in something and to require extra help from people to get through it. People want to help. Talk to people! 🙂

Adrenaline surge experience

Am gonna talk about my experience I had last week with my adrenaline surge, even though it’s a little personal, but because it is personal I thought it would be good to share to an audience who may understand.
I used to suffer badly from anxiety so I was used to these things happening, where I’d feel frightened of a situation and feel an urge to run away from it. The whole ‘flight and fright’ occurrence. But when POTS symptoms came to say hello to me a couple of years ago, adrenaline came as well to attempt to boost my low blood pressure UP. And it probably succeeded with that. BUT it also succeeded in turning an already anxious person rather loopy.

I can understand how POTSies (and probably other spoonies too) are misdiagnosed with mental illnesses, or have co-morbid mental illnesses. There are many ways that chronic illnesses can make a usually healthy mindset go a bit off the rails, such as having difficulty adjusting to or accepting living with a chronic illness, medication side effects, or symptoms of chronic illness such in the case of POTS; lots and lots of adrenaline.

Anyway, back to my little story. I had just come back from walking around my suburb for a couple of hours, shopping for clothes, which was big for me in terms of exercise and mainly energy usage. I got home with only half an hour rest (I usually take like a good 2 hours at least to rest), and had to go to my physio appointment for my hip. Also, my midodrine was due to run out in about an hour (it’s a medication that only lasts 4 hours). I obviously didn’t plan this very well. Story of my life. 

I went to the physio, feeling pretty exhausted. I had to sit in the waiting room for half an hour to wait for my brother, and the news was on the TV in the waiting room, playing depressing things about the world such as how Australians are joining a terrorist organisation, etc. I have a sponge personality that absorbs all the senses, and I guess because my medication was running low in my system and I was physically drained, adrenaline at like a SUPER level started to kick in as response to the anxiety I felt watching the TV, and the anti-POTSie situation I had put myself in.

So here’s the interesting part (or the embarrassing part for me). I walked into the room when it was my turn, and mum was in there too (I’m 20 and she INSISTS on sitting in my appointments… okay), and because she never lets me get a word in, I sat there like a grumpy 5 year old, listening to their conversation. I didn’t realise my physiotherapist was reading my letter at first, I thought it was my brother’s, so I’m pretty sure I was rolling my eyes, having had lost control of how to act like a normal person cos adrenaline was like blazing inside me and everything I did was impulsive. A lot of the appointment was pretty blurry, I do remember almost-collapsing after jumping off the chair far too quickly than an exhausted POTSies should be, but the end of it… oh my goodness. She asked me if I’m still seeing my exercise physiologist, and because mum was there and very defensive of him, I couldn’t explain the real reason why I didn’t wanna see him any more, so I just said a whole lot of blah blah. Which she responded to like a normal person would to a grumpy 5 year old, with mummy-who-knows-best watching over. And that made me ANGRY. Not at my physio, but at the whole situation I was in. I ran out of the room early, saying something like how I’m going to destroy my brother for spraying me with the cat spray earlier, I coudn’t see him in the waiting room, so I just ran out onto the busy road at about 6pm at night (meaning it was well and truly dark), and started running up a hill. The exact opposite of what I’m meant to be doing with a injured hip. I was running out onto this dark, unfamiliar road (not in front of cars luckily, I had a bit of sanity left in me), up a hill, and I just couldn’t STOP! I was hyperventilating from over-exerting my level of fitness over its limits, but kept going until I collapsed onto the footpath at the top of the hill. After 5 minutes I got a hold of myself, got up, walked down the hill and sat patiently back in the waiting room like nothing had ever happened until mum was ready to drive us home.

Now, I hate talking about my mother badly, but this is just what my life is like at the moment, whilst I’m trying to get well again and become independent. Without my mother I wouldn’t be able to go to these physio appointments at all, as being independent is really hard with a chronic illness that won’t let you drive or go to work. I’m very lucky I have her, even if she isn’t helpful in a lot of ways.

Anyway, I’m glad I got that off my chest, it was embarrassing, and every time my brain goes loopy it’s also a little traumatic as well, as it’s like you’ve lost control of yourself. Thanks for reading 🙂

Life update no.1: Exercise routine and goals

Thought I might make a post sharing some of my short-term and long-term goals, and where I am now in terms of my recovery from chronic fatigue.

Thought this was relevant as one of my goals is to be able to run up a flight of stairs again, pain-free.

Because I have been busy studying for my exam this last month, I haven’t paid enough attention to my health, and spending time doing things necessary to my recovery. Which is a very bad thing, but in my case I find it difficult to focus on more than one thing at once in my life, especially if one of those things is desperately cramming an entire difficult subject into a few weeks. Which, I could have chosen to put off, but it meant I would have had to have gone through the trouble of withdrawing from a subject, and I have put so much time, money and energy into this subject already, it wouldn’t have been worth doing. I made it through the exam, and I’m fairly certain that I’ve passed, which is a big relief (although I’m not totally sure…) So now I’m left with the worst instance of chronic fatigue that I’ve ever had, due to my ignorance when I first started getting sick a little over a month ago. It’s always onwards and upwards with setbacks like this.

This is the first time in 12 months where I’ve had an extended time off from doing anything with a high level of commitment, which I’ve desperately needed. So I’ve made some goals for this period.

The first one is essentially:

  • Exercise and do hip strengthening every day.

I need to get my body fitter again to cope with real life, and get rid of a lot of these awful POTS symptoms. So far, I’m doing pretty good at this, although my body is a lot weaker and slower to recover than I thought it would be. Guess I’m learning my lesson the hard way.

The second goal is:

  • Pace my life better.

I get distracted really easily even when I do plan things, so I really need to improve at this.

  • Set a good sleeping pattern.

Aka- don’t go to bed after midnight because then I feel revolting the following day.

  • Start studying Data Analysis early.

Data analysis is the subject I had to withdraw from last year because I got chronic fatigue. I found it the most time and energy-consuming, so I’m hoping a head start will make life a little easier once the semester begins.

  • Look after Dewie (my pet turtle) better.

I feel terrible- because I’ve been barely able to look after myself lately, I’ve put even less time into looking after Dewie. He still has been getting fed, but tank maintenance, his daily dose of sunshine and variety in his food has been lacking. I NEED to get better at this; I have a responsibility over him.

IMG_5433My Dewie

Also, a bit about my exercise routine- it isn’t overly structured, it’s just doing about a 20 min walk around my neighbourhood on the flattest area possible every day, and measuring my heart rate and Borg score. I can’t walk up steep hills because it hurts my hip, but this is difficult as the area around my house is quite hilly. I’ve found a route recently with as few steep inclines as possible, so that’s my work out every day, followed my hip strengthening afterwards.

I’ve been doing this routine for about a week now, and even though it’s helping, I still don’t have enough energy to be at a liveable level. I think it’s a lot to do with me not actually ‘doing’ much, and aside from daily walks, I’m not really moving around. Unfortunately it’s winter and freezing outside and quite unpleasant to do gardening in, but I think I’m gonna have a go anyway, just so I’m moving around doing something other than lying down reading or sitting up at my computer. I could organise to go to the pool or something as well, but it’s difficult to do when I don’t have my licence to get there. Any suggestions as to what I could do to move around more would be greatly appreciated!