Changes

I had my two remaining wisdom teeth out this last week. The procedure went well and I was with it after the sedation within an hour.  But it’s left me feeling a bit out of sorts.  It’s hard to put my finger on. 

I am experiencing dizziness again quite a lot ever since the sedation.  Whilst I’ve had dizziness before it hasn’t been a huge day to day symptom this last month or more. So either the sedation, or the “trauma” of the teeth being removed has made me very fatigued, or the sedation itself has had some kind of long lasting effect on my system.

But it’s more than dizziness.  It’s an almost bereft feeling.  Very odd considering how keen I have been to get these teeth out of my mouth for the last year.  But I think that feeling if passing.

Of course it’s also been a mask to hide behind and to stop me thinking about the major change happening in my life as from tomorrow.

Growler has a new job, in an office, 9am-5pm, 5 days a week.  It’s good news.  He’s excited about the job itself, it’s a year contract of good, steady money and security in times where a lot of companies are wobbling over budgets and freelancers are having to work extra hard to secure work.  The organisation has their office locally, in our city, just 15 minutes walk from our house.  It’s ideal and it’s a job he’s really looking forward to doing.  I think the work, the security and the structure will be really good for him.  I’m so proud of him and so excited for him.

The excitement is mixed with some trepidation about how my own 9-5 is going to work out.

I’ve spoken before about the fine balancing act of positivity/hope and practical/realism.  I’ve had 2 family members being super positive and suggesting the structure might be good for me too.  That it might give me the incentive I need.  Growler says this is out of well wishing and positiveness on their parts but I can’t help but feeling a sting that anyone should think what I need is motivation.  That if I am forced to get up and make my own lunch that will help me to get better.  This just suggest they don’t really understand the reality of my illness.  But I shan’t dwell on that for now because I am trying to think positive too in the face of major changes to my life and care.

My fear for myself and spending the majority of the day for the majority of the week alone and without practical support is only matched by my fear of how Growler is going to manage balancing a full time job with caring and looking after the house.  It’s unknown territory for both of us.  I get the sense from my parents and his that their most worried about him, but that might be because no-one wants to press me on how I am going to cope.

So my breadwinner is off to win regular bread and together we’ll muddle through a new way of living with ME/CFS. I am incredibly fortunate not only to have a supportive breadwinner but to have had the luxury of having him here, on hand nearly every day for over a year and a half.  I love hanging out with Growler.  Having him around every day has been a joy and helped normalise my world within these 4 walls of the house.  I have to think of this as a foundation for what lies ahead and try not to dwell on the upset of losing it.

It might mean I blog more.  Being alone a lot of the time.  It’s certainly going to present me challenges both in my day to day living tasks and in my marriage.  What I want is to be the supportive spouse and send Growler off to his new employer with no worries except focusing on a new job.  But I can’t seem to set aside my own overwhelming sense of fear and loss of what the future holds.  Of being scared that all the tiny extra’s of effort, all the things I forget when left to my own devices (how much is too much, when to drink, when to eat, how to keep perspective) will gradually wear my health away and leave me useless. Leave me being more a burden.  Yet the fear and the worry is self feeding – because worrying about it makes me feel ill! 

I can see how from the outside this could all seem like low self esteem, depression maybe, being dependent on my husband for every little thing.  That now with the “incentive” it will make me better.  But truth is I AM dependent on my husband for a lot of things.  That doesn’t mean it’s wrong, or bad for my self esteem, it means I am chronically and severely ill.  I don’t rely on my husband to make me cups of herbal tea and bring them to me in bed because I can, because I am lazy, because I choose not to do it myself.  It’s because to make the tea myself means a whole complex set of weighing up of efforts over reward that usually means no herbal tea for me.  Because it’s not just about a teabag in a cup – it’s about moving out of bed, moving dowstairs to the kitchen .. the stairs being a huge effort this is minimised to once up, once down a day if possible so the move to make a cup of tea means first getting dressed, getting washed perhaps, gathering what I need with me (medication, phone and so on), resting inbetween these things, resting once down stairs, then maybe thinking about how to get water in the kettle … and so on.

If it were as simple as relying on my husband just because I can – I can promise you I’d be choosing to make my own tea.

So it seems a part of the pain and fear is the perception of the outside world.  Perception that I am more capable than I show – do I have to make myself more ill to prove to them I’m not?  Perception that with the right kind of motivation I’ll find I can do more – will they recognise the things I have to not do in order to do the essentials myself?  And really what they THINK doesn’t really matter.  All that matters is living my life the best way I can.  Finding the compromises that work the best for me, for me and my husband.  Finding ways to be happy and to not wreck what level of function I do have. Finding ways to keep my sanity, my perspective, my sense of self.  And trying to balance self care with not making myself worse.  Balancing my own happiness with my husbands.  Trying to balance security and regular income and my husbands job satisfaction with the challenges of being a person with ME on their own 8 hours a day, 5 days a week.  Trying to drag myself away from the fear and to get on with the living.

My head is stuffed full of things – but there doesn’t seem to be much sense coming out.  I’m not sure I wrote the blog post I wanted to, because now even I’m confused about what I want to say.  But that’s part of what I’m saying.  I’m a mixed up with thoughts and mixed up because ME makes my thinking cluttered and fuzzy and whizz around in a circle even once a conclusion has been reached.  I expect more rambling blog posts will follow.

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9 Responses to “Changes”


  1. 1 Nina Bunin November 9, 2008 at 2:51 pm

    The sedating drugs are very hard on orthostatic intolerance, which in turn affects our emotions.

    This may be a good change, but not for the reason your family is telling you. After many years of this, I’ve realized that absolutely NO ONE can understand this. Growler probably comes the closest, but he’s still not in your body. I’ve given up trying to explain and explain bec it’s just impossible.

    It’s a big transition, but the reason I say it may be good is because you’ll need to pace yourself even more carefully. In my experience, this takes a lot of trial and error and then more t & e. But it’s an important skill to learn. And re-learn:-)

    Try to rest and not fret. The stress from the dentist is going to affect your emotions – absolutely.

  2. 2 ashysheela November 9, 2008 at 4:10 pm

    ahh, so many things this is bringing up! try not to focus on what other people say, they are just stuck for positive things to say sometimes i think, and maybe don’t get the subtlety of what their “helpful” comments imply… as for what they “think” well, only you know what your limitations are and how best to deal with them/balance your life and energy.

    All i can say as someone who is at home alone from before i wake up, until half five/sixish, then often “alone” while “she” works upstairs after eating until 9pm, is that it is hard and i often find that all the little trips to make tea, heat up wheatbags, get food etc. do add up to too much, but that i do find ways around some of them when i am most unable to cope. I think i blog less than i would if she was here all the time as i use most of my energy on getting the essentials done. I think it is being alone that is the hardest, rather than getting lunch/cups of tea, but that may be different for you. It is always so tempting to stay up too late when the “quality time” is from 9pm onwards!

    Maybe a little kettle upstairs or a flask may be worth experimenting with? Maybe Growler can make you something for lunch that won’t go soggy in the fridge by then? I think that by wednesday you will feel more ok about this and be on the road to adjusting. You may find there are benefits to not having him clattering around all day! I hope so.

    Good luck! If you get lonely text me and if awake i will give you a ring 🙂

  3. 3 cusp November 10, 2008 at 3:45 pm

    Well, as often is the case, many bells are ringing.

    I’ve been through being alone virtually all day, having my partner here all day and, as is the case now, here some days and not others. Each situation has its own ‘peculiarities’ ;0)

    When I was first ill the children were small — one just started school and the other at childminders (from when we were both at work full time). My partner was still working f/t and then having to collect children on way home (I couldn’t walk properly, let alone drive), bring them home to a house where virtually nothing had been done and home to an invalid who was not very sensible or helpful. We struggled through and then three years in, my partner had a year off so we were then together 24 hours a day: more adjustments — especially as I was beginning to find some independence again and my partner had more time to be ‘nursie’ — opposite ends of the experience LOL. All turned out well and now partner’s working p/t.

    All I can say is, like the others, try to get as much stuff that you need upstairs (flasks, medicines,phone, TV/radio). You may find that the energy you do not expend on conversation/interaction with Growler stands you in good stead for other activities. I think we underestimate the amount of energy it takes to keep up with the well — even in terms of how fast their brain, mouth, ideas work. You can now go at your own pace.

    I’d also say (may be controversial)that it is good to try to do little things for your self –it’s true that energy-wise it may not be helpful, but psychologically [there’s THAT word ;0)] it will help you to feel more independent, confident and like you’re contributing too e.g. even in the darkest days at the start, I’d still try to get up ten minutes before they all came in and put the kettle on and fill the pot with tea so they felt welcomed and I feel I’d made a contribution no matter how small. If I struggled downstairs to make a drink and another hot water bottle I’d sometimes put some rice and milk and sugar in a bowl and sling it in the oven on low so there was a rice pudding for tea. In all honesty it exhausted me but if I did that at 11 a.m. I had til 4 p.m. to get over it and present a less ravished look when they all came home.

    It is hard but you WILL work out your own way to do it. Blog more if you want — we’re all here and enjoy your work.

    REMEMBER: the kiss of death is to slump into a kind of wsteland and end up watching Jeremy Kyle. If Jezzer starts being part of your regular routine then you’re sunk ;0)

    Re. dentists [and I have to gotomorrow ;0((( ] the sedation stuff is useful but nasty and when I had a tooth out a few years back I had exactly the same symptoms as you. I tried to ignore them too quickly and made the whole recovery longer than it needed to be so take it slow and steady and you’ll be OK once the damned stuff is really out of your system. Hope you’re taking arnica and hypericum for the bruising and rescue remedy for the trauma –and it is trauma: no apologies.

    Take care

  4. 4 rachelcreative November 10, 2008 at 7:29 pm

    Thank you Nina, Ashy, Cusp. I’m so touched.

    Nina – Growler says you summed up the possible positives perfectly – about learning/being able to pace myself, myself. I was grumpy about it (difficult to get excited by the prospect) but feeling more pragmatic today.

    Ashy – Yeah it’s hard strking the bets balance you can with what you’ve got. I may be joining you for a middle of the day nap – if I can be disciplined enough! Thanks for the offer of a chat. Same back at you.

    Cusp – I appreciate you taking the time to write this comment. It helps me it does. You make some good points, some good advice. And yes I put a stop to that day time telly stuff when I was first ill and Growler was out part time and working from home the rest. I’ve invested in a good DVD box set for a lunchtime break/treat.

    First day has gone pretty well. So much so I feel kind of silly for making a fuss. But I think it’s going to take a while to adjust and get the balance through the day right. I’ll try and blog about it soon.

  5. 5 Matthew November 10, 2008 at 8:27 pm

    Your paragraphs on dependance were brilliantly put. Thanks for writing

  6. 6 ashysheela November 10, 2008 at 8:49 pm

    Glad your day went ok, it will take a few days to know if you are over doing it or not i think. I was just thinking that i hope this does not have a negative effect on your art work, as you have been very productive lately… as for naps i take two most days 😦 things are not good, i don’t seem to wake up properly til the afternoon, whereas mornings used to be good for me… no rhyme, no reason!

  7. 7 cusp November 10, 2008 at 8:50 pm

    Blimey girl you go for the midday nap —I always do —acn’t function without. It’s bliss zzzzzzzzzzzzzzz

  8. 8 rachelcreative November 11, 2008 at 11:45 am

    Well don’t tell Growler but the excitement of doing things means I am probably (well very probably) over doing it.

    I’ll blog about this.


  1. 1 Rebalancing and Getting It A Bit Wrong « ChronicallyMe Trackback on November 11, 2008 at 12:05 pm

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