Wednesday, 24 November 2010

It's all relative

Writing blogs, tweeting are all mediums of me getting a little bit of myself out in the world. How much of myself -or for that matter, anyone - I reveal is all up to me. Sometimes I'm a bit elusive. Everyone has a private life. Not every moment is to be set out into the world.

And yet I find myself posting this, something I didn't expect I'd do for a long while. It all stemmed from a good online friend, Mary Mayfield, who made a perfectly innocent comment today. Part of my tweet was explaining that it was nice to feel a little less ill. Mary responded by saying less ill didn't sound brilliant but perhaps it was a step in the right direction and she hoped I'd soon be feeling well. (BTW none of this is for a pity party or anything, this is how it is, and it feels the right time to disclose a little).

That tweet caught my eye was I was putting the laundry up to dry, and I got thinking. Thus this post was born.

It's all relative. Really, it is. I'll give a little background in a minute, but first I need to explain my tweet which led to Mary's tweet. I've started a new painkiller which is rather strong (okay, rather strong could be a mild phrasing on my part. The painkillers are strong, they are ones which people get after some operations). One of the side-effects is nausea. Initially I could deal with it - I ate mints. Slowly it got worse. I went home from work early one day. Survived the next few days (having Wednesday off is a lifesaver). I was eating mints all the time (and getting thoroughly bored of snacking throughout the day - it's not as fun as it sounds). Normally it started after I'd taken a dose - breakfast, lunch, dinner and bed. However, this Sunday I woke nice and early at 4am (yeah, sleep can be a luxury for me), feeling extremely sick. No work for me Mon or Tues.

Today when I saw my doctor for a check up, I asked for anti-nausea pills. I had thought I could cope, but the inability to work is an example of me not coping. I got the medicine, waited until lunch, then hey presto took one. 20 minutes later I was feeling marginally better - thereby 'less ill'

Less ill is relative: I don't feel peachy, but I'm not constantly wanting to puke. Or needing to eat mints. Both of which is nice :)

It's all relative: a few weeks ago a colleague was a bit worried because she had to go for an operation. I'd noticed she wasn't herself, and was curious. When I learnt the cause of her worry, my immediate thought was 'Huh? Operations are fine! No problem'. For me it's normal to have operations - or it was. I had quite a lot when I was little. But I'm beginning to realise (after many, many years) that what is normal for me isn't normal for most other people.

I'm not naming what I've got - not because you can catch it, but because well, you don't need to know. In some ways it is like ME (with extreme fatigue). I have muscle weakness, I can do a fraction of what other people can, I'm prone to infections. If I get a cold, it's almost inevitable that I need a day or two of solid rest to recover. I don't have enough energy in all of my cells. So I start the day with a limited amount, and every normal task that others take for granted are mountains for me to climb. In the case of stairs this is literally true.

That's why sometimes I don't review for a bit when I'm ill. I have good days and bad days. The bad days are dire and I really do feel terrible, unable to do very much. Even reading can be too much on those days. The good days are relative. On good days I probably have what a lot of people suffer when they get flu (the bad kind, with aches, dizzyness, a lot of fatigue). Strange how my good days now, were my bad days less than 2 years ago. That's the problem with progressive chronic conditions - they progress.

It's not all doom and gloom. The effects of my condition are unchartered and very individual. I used to be stable for a long while, then have a  little dip, then be stable. I'm doing more of the dipping at the moment, but I'm getting to grips with that too.

It's all relative: one online friend was amazed I have so much time for reading and blogging. That's all necessary so that I rest and relax. Working part time is nice - but it's relative when most of that time is spent feeling rough. The reading and watching dvds is a pleasant distraction. One unattainable dream would be for me to able to work full time. Even when I was relatively well a few years ago, this was never going to happen. If I was full time, I'd go out there and be a publicist. I'm  not, so instead I write a review blog. And this one. And write my own stories.

Yes, I would love to attend heaps more publishing events, but I don't have the energy. This is why reading is so much fun - I generally don't need much energy to do it, and I don't have to go anywhere to do it. The few events I do go to, well they are very special, and worth being extra tired for the next few days.

Writing is a pleasure which I love. I can't always do it if I'm too tired or if I'm having a super bad day and the pain is too much to type. By pain I mean pain that's off the 1-10 scale. Hence the strong painkillers. Whether they'll work well has yet to be seen, but that's why I have the anti-nausea medicine, to counteract the strong side effects so that I can get function. What I have is never going away. The aim is to make me comfortable (and not a complete zombie). There are small breakthroughs in research. I was delighted to hear this. My specialist said it wasn't soon enough for me. No, but maybe one day. And if not me, then someone else will benefit.

Benefit. That's why I decided to write this post and reveal a little bit more about myself. I've stumbled across a few blogs where people suffer from ME. I gained a lot from the posts. I was amazed to find people with similar struggles to myself. It's true that it does feel that most people can't understand what I'm going through. I used to think that a lot. But I've learned that everyone has a health problem. It could be quite a minor one, but I can relate to virtually all of my friends at one point or another in their lives. We have collective groaned other waiting times for appointments (I'd like to point out I'm extremely grateful my condition is known, that I have access to specialist care - most particularly my pain clinic who are really amazing people). We have swapped info on various painkillers (and their not so pleasant side effects). Sometimes there are positive sides to medicines - sometimes they work (okay, usually they work. I was just unfortunate that I was on the wrong ones this summer. My condition is very rare, it's also very rare to experience the pain I'm getting. Being unique is fun - some of the time)). The medicine that didn't work this summer was funny because after 3-4 hours of taking it, for a couple of weeks I would be absolutely hyper at work. I was back to my 'normal' self, which didn't last long.

It's all relative. Yup, I'm going to end with this one. To me, I'd love just to have a few headaches and colds a year, like so called 'normal' people. That wish isn't coming any time soon. That's ok. Feeling a teensy bit better is a huge deal. I look forward to new medication because I'd like to add to the colour of medicines I currently take at each meal and bed time. Sadly it is mostly dull colours: various yellows, whites, and one has a bit of green, one is black. I would love bright purple! I've yet to find a medicine of that colour (and won't for a while.) I've tried to avoid this part of myself online, but it's a part of who I am. If sharing some of what I go through on this blog (occasionally and not in much detail) helps other people, like other blogs have helped me, then I feel I'm a benefit to other people.

Everything in life: health, money, friendship, love, stability - it's all relative.

Edited to add I am happy to answer any questions you may have. If I don't want to answer here, I'll email you a response. 


Talli Roland said...

Thank you so much for sharing a bit about what you go through on a daily basis. I so admire your pragmatic attitude and your ability to take comfort in reading and reviewing during your downtimes.

I'm amazed to read this after corresponding with you on Twitter - you always seem to have have drive and energy that you put me to shame (and I have NO health issues! I just like to complain!).

I really admire you - and thanks again for sharing.

Krispy said...

Your attitude about this is amazing! I'm glad you're feeling better, and thank you for sharing this part of yourself. It makes all you do even more impressive! (You know how I'm already constantly blown away by the amount of reviewing and writing you do.)

Wishing you the best!

Nayuleska said...

Thanks Talli and Krispy! My mental energy almost always exceeds my physical energy.

maryom said...

I must admit I'd not realised how long-term ongoing your illness was. It's good to see that it's not beaten you, not pushed you into that corner where everything revolves around illness - have been through that with Hubby's heart attack.It makes me realise how easy it is to take good health for granted. Meanwhile we should all seize the day and make the most of it while we can.

Nayuleska said...

Hi Maryom - yeah, most people didn't know that :) I've had it since I was born (diagnosed very young), and will have it forever. Some days it does get a bit gloomy but books keep me happy :)

Rosalind Adam said...

I do hope that sharing this with us has helped. I know it won't make you better. There's no magical cure but sometimes it helps to talk/type. Just like Maryom I have a husband with an ongoing serious illness and I too know what it's like to live with constant worries and medication. I'm so glad the anti-sickness is helping... even if it is just a bit.

Nayuleska said...

I think it's helped because know everyone knows why I get ill so much, or can't go to as many publicity events.