Tag Archives: driving

Damn You, Kazza!

Wineglass Bay is considered to be the most beautiful bay  / beach in the world so visiting it during our stay in Tasmania was an absolute must.

IMG_4645 My first blog post from Australia was entitled: Not a Kazza in Sight! That turned out to not exactly be true. Kazza definitely came along for the ride. We managed to keep her in abeyance a lot of the time but we couldn’t help her coming to the fore from time to time.

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You see climbing up a mountain(ish) pass (to Wineglass Bay Lookout) and down the other side (to the beach itself) is hard work for a girl with a breathing problem but even worse for a girl with a competition problem. I constantly compete with myself (and some would say others too) and consequently get quite frankly pissed off with myself if I can’t do things. Which we all know is of course ridiculous!

IMG_4674So getting upset that I struggled to walk up a steep hill when I could barely walk to the end of the road this time last year is crazy. Getting upset because I was exhausted at the end of an 11km walk is also ridiculous but I just can’t stand to fail. I can’t stand to admit that I am not invincible which of course is how we got into this stupid mess, September 2013!

Australia was spectacular and was without doubt a holiday of a lifetime – I will always remember pretty much everything we did over those three incredible weeks. Every day brought a new adventure and a new sight that was unforgettable.

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The consequence of this incredible holiday from a health perspective however is that I returned exhausted. My week off to recover afterwards barely touch the sides of my exhaustion (largely because I filled it with activity everyday!). My week off rather than constituting doing nothing, constituted doing lots just not running! That, I convinced myself was a week off.

I had begun to recover and had even done a successful yoga class when our shipment arrived. This involved two solid days of hard work lifting and carrying and packing of boxes. Without leaving my house, I managed to accrue the guts of 20,000 steps a day and burned about 4000 calories! This was not what my body needed. We won’t even get into the psychological impact of lots of wedding presents getting smashed!

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Of course mixed into all of this was more issues with our washing machine which I of course had to deal with while still trying to direct hundreds of boxes to vaguely correct rooms around the house! Exhausting both physically and mentally.

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Note water gushing over the top!

Of course that washing machine repair failed (shock horror) and so it required, a few days later, another fight with a plumber over the course of three hours that water shouldn’t be dripping out of the hose pipe that, unlike what he claimed,- this was not ‘normal’. Every failed attempt to get me to agree that the leaking hose was fixed led to a phone call to his boss and every conversation started with him in Marathi / Hindi explaining that, ‘mam says there is a leak but there is no leak’ quickly followed by my saying (in English), ‘don’t say there is no leak when there is a leak!’ His boss seemed to inform him each time to fix it again! We got there in the end but it did take three hours! Once again, mentally exhausting.

Now that little adventure was followed by my deciding I would get a guy in to clean my windows inside and out. They were beyond filthy – still covered in the construction dust from when they were built a year ago. In places, it was difficult to even see out the window! I agreed to a price and when he would come. I didn’t on the other hand grasp the fact that it would take about 6 guys and about 9 hours of work (over two days) inside in the house and another 2 days to clean the outside of the apartment (on ropes from the roof!). Why would I ever have considered that it would take this long?! Sure our apartment is big but good lord it’s not that big!

While the guys are here, you have to hang around – I can’t exactly leave them unsupervised but it means you can’t really rest. I feel too uncomfortable with having people in to do such jobs to lie on the sofa and watch TV or with them moving around the whole time – go to bed for a few hours. So I continue to potter about, convincing myself that unpacking those boxes or carrying that heavy load is ok when really I am doing exactly the thing I shouldn’t be doing!

These adventures of course are unusual. They are in addition to the everyday challenges that you are faced with here. Where can I buy fruit? Where can I buy vegetables? Where can I buy meat? When will these places be open? When will I have the car to go and get them? What price am I willing to buy the rickshaw driver who is trying to rip me off? Where can I get big black bags for the dustbin when all I can find are little ones? Where do I find cat litter that isn’t vile and disgusting because the cats are hating what I got for them!? Where? When? How?

Over the last week therefore I can categorically say I have begun to feel again the way I did 18 months ago. I am reminded again about the difference between fatigue and tiredness. I am not really tired, I am seriously fatigued. A blog, many months ago now, talked about how I had to walk the tight rope between doing too little and doing too much. Too little and I would make myself too physically unfit to deal with my illness and psychologically do damage by isolating myself from the world but equally doing too much would make me physically more ill and make it harder for me to psychologically deal with my illness (my brain gets tired just like my body does).

cropped-20140318-0801571.jpgThe tightrope is back and once again nobody has given me any safety ropes. While I feel I am in a much better position than I was back then, it does without question scare me. This feels like the worst relapse I have had since I seemed at least on the outside ‘to be better’. Just like I coped before I can cope again.

And here, far more than back in the UK, will help me recover. Here, I have lovely Maggie who comes and cleans my house. The weather is warm and that always helps. I don’t have the pressure of trying to return to work. I can cheat and buy my meat from a 5 star hotel and order my vegetables online (even if the price and quality isn’t the same as buying them elsewhere). I have a driver so I don’t have to worry about not being able to drive or getting the energy together to use public transport. There is also an incredibly supportive group of people here that will help me to look after myself (just like I had back in the UK).

So, rather than seeing my current state has something traumatic and worrying, I see it rather more as a warning, a reminder of where I have come from and where with very little trouble I can go back to if I am not careful. So I will be careful (well, I will at least try).

I didn’t write this blog to worry people but more as my way of saying – ‘Please, those who have been on Karen Duty in the past, can you return to your posts’ and ‘those who are new to Karen Duty, can you please look out for me and be bossy and tell me off for doing too much and understand if I don’t do as much as I was.’

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Needing to be independent

Until I was about 31 I couldn’t drive. I’d never needed to get my driving licence. Suddenly, we were moving to a town where without my own car my independence would disappear and I wouldn’t even be able to work. A mad few months of driving lessons, theory tests etc began. On my in-laws wedding anniversary, August 26th, I passed my test.

The first time I went out in the car by myself, it felt amazing, I felt free! Now my father-in-law has made a sensible suggestion but it is a suggestion that logically I agree with but my heart screams, “No!”

He has suggested I sell my car, I haven’t used it since November and it sits at the side of the road, depreciating. A car needs to be used or it starts to have problems and mine is not used often. So logic would agree, I don’t think I’ll be driving it any time soon so yes it should go.

Selling it however feels like it removes my ability to be free, to be independent. I’m one of the lucky ones, I don’t have severe M.E. so to some this worry will seem frivolous, they no longer worry about losing their independence because it is long gone.

However, I have already lost so much of my independence: I haven’t been in a supermarket since Janurary; I can no longer even walk into town for a coffee; I can’t plan my own holiday and then just wander aimlessly around when we get there; I can’t leave the house whenever I want and go for a long walk; I can’t spend a few days alone when my husband goes away; I can’t plan my career; I can’t spontaneously decide to do something social; and I can’t drive.

Selling my car feels like it might be the start of a slippery slope towards those that have lost total independence. It would only be a monetary decision but it feels like so much more than that.

For me, being independent was always a crucial part of who I was. At 19 I moved to London for three months, I did the same at 20 and at 21 I moved there to do a Masters degree. I knew nobody and had to create my own life, get a job, find a flat. At 24 I moved to Poland with accommodation for a few weeks but no job, no language, no bountiful money and only one friend. Each time I faced these challenges pretty much alone and revelled in my independence. I have always loved being around people but I’ve never really needed them.

Today, I’m faced with needing people, not just loving being with them. It is a challenge to deal with and this is one thing I haven’t quite dealt with yet. I hate to tell people that they need to bring me home because I’m tired now, I hate to tell people to get me things because I can’t do it myself. My greatest hate is asking my husband after his long day at work to do jobs at home while I have spent the day on the sofa: I hate that I can’t do it all!

When you read the M.E. forums this sense of dependence on others seems to have the greatest emotional reaction. People desperately need the support of others but crave their own independence.

When I was well, I never considered the importance of being independent. I never thought about my elderly neighbours, those who were unwell around me, those who through illness or age have lost their ability to be truly free.

I hope when I get well, I don’t forget what the reality of losing some (luckily) of my independence was like. I hope I do something to help others retain their independence. I hope I don’t become oblivious again to those that fear it’s loss.

Will I sell my car? I don’t know – I don’t think it is a decision I’m ready to make.

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