Unexpected Truths

So for one reason or another (not important) I had a big snotty crying session last night and had a ME outpouring during which I learnt some interesting things.  Sometimes even when I feel I have a good handle on things when something triggers a big cry it’s like a hidden compartment pops open and I discover all these thoughts and feelings I have about things.

What I learnt last night was:

  1. I am paradoxically basically happy in my core but aching and hurting about my life/ME situation
  2. I’ve been thinking a lot this past week about the improvement of my condition compared to 3 or 4 years ago (my cognitives, communication, migraines, pain, sleep, recovery from exertion, energy levels are all a lot better than they were and at rest symptoms are a lot less oppressive) but realising that this doesn’t add up to squat while I still have my illness effect every apsect of my life including personal relationships, inability to work or be productive and being stuck at home without being able to care for my home or myself.  This progress is almost irrelevant in the grand scheme of things because I’m not really much more functional than I was.
  3. I’ve set myself a sort of vague aim for trying to maximise on the gains that LDN has given me feeling that perhaps I wasted opportunites to build on this in the last year.  I’ve set myself this aim of trying to do gentle stretching and movement with the aim of perhaps being able to go a 2-4 minute walk daily down the line.  I’m giving myself the year to work on this.  Last night I realised that this will be a massive effort and require patience, dedication & diverting of energy from other things to achieve but will also be a relatively teeny tiny achievement.  I can fight for a year and still be only able to walk for a few minutes at a time.  Big wow.
  4. I realised that 2 and 3 indicate a massive resentment about my illness and my situation.  I’m not even measuring myself against 100% healthy when I belittle my improvement and efforts – I’m measuring against my pre-crash levels of ME where I was around 60-75%.
  5. I’ve been montoring myself for signs of despression setting in because I’ve been wrestling with all this crap for say 6 weeks.  I’m pretty sure I’m keeping on top of depression creeping back in, flexing my CBT muscles but I’m dangerously close to that place where you decide to just let the black cloak wrap around you.  I do not want to go back to that place and I will fight what can seem like the easy option to give in to the sadness.  But I recognise that there is a fight there going on.
  6. Not creating art is probably having an adverse effect on my state of mind as I’m lacking that outlet and also the sense of achievement and productivity it gives me.  But equally the state of mind isn’t helping me to find ways to create art.  Hoping that this release of inner bits and bobs might free something up a bit as last night I was having vague ideas about the direction my work could take.  To vague to start painting today but more than I’ve had in the last month.
  7. My husband is under tremendous pressure and my job (as I see it) is to be supportive and to not add that.  My most helpful things are to not cause him uneccessary worry or concern, not overdo things so he has to pick up the pieces and to leave enough energy to listen/encourage/support.  But the strain and responsibilities he shoulders, often in order to allow me to reside in a world where I am protected and cushioned, that pressure on him scares me.  I feel, and in fact am to a large extent, helpess to share the burden with him.  I actively have to add to the load often because I can’t (thanks to ME) do certain tasks, like for instance talk to our landlord, because of the physical response I get to the stress of it.  I am scared for him being under so much pressure and I feel responsible.  Things are worse right now because his job is being made redundant in July and he’s looking for work in a profession that’s experienced a lot of budget cuts so there’s a lot more competition and because he’s not happy anymore in the job he’s doing at the moment.  Plus he’s looking for work he’ll enjoy, will pay good enough to support us both, suitable to give enough to his caring role (so no long periods of time away from home) and therefore preferably local/commutable so I don’t have to find another GP and we can stay close to family.  Feeling stressed about his stress levels isn’t helpful for either of us but that’s what’s been happening like it or not.
  8. My ME, the nature of chronic illness and being housebound whilst also not very productive brings with it a change in how I am.  I relate differently.  I settle into the security Growler offers me in my cushioned world and sometimes I push too much without knowing it. Two years ago my New Year’s resolution was to not volunteer Growler to do things on my behalf. I would say “Oh Growler will drive you there” without asking him using him as a substitute me.  He’s not a substitute me and now he has caring for me to do on top of everything else.  So I have learnt not to do that anymore and to suck up the times I want to volunteer to help and I can’t do a thing. Last year my resolution was to stop picking away and being negative.  I thought I was being devil’s advocate or helping things/Growler to be or do things better by saying “Yer that’s good but why don’t you …”  I was actually undermining him, micro-managing things and not trusting him to do it right.  Not because I didn’t think he was capable but because I was living out a part of my life through him.  I was trying to do a task with him by negotiating how we would achieve it – but actually I was driving him mad and not letting him get on with things.  I had to learn that when someone else has to do the job you have to let them do it, you have to let go and let them get on with it.  Growler got really angry last night because I was doing this again but really I wasn’t and really he was angry with work and himself and the world being unfair and all those frustrations that get bottled up and explode in the face of someone you can explode in front of safely because they love you.  But it did set me thinking about how I may in other ways still be trying to live a part of my life through him and how I need to address that.  It’s hard because it strips away another layer of leaving you helpless, attempting to sit serenely while others “do” instead of you.  I want to cry just thinking about it. This illness leaves me with so little already losing anything else hurts.  But keeping my marriage happy and healthy is even more important.  As is finding strength and usefulness and peace of mind in the right ways and not from living through other people.  I can’t put my finger on what it is I need to work on but I can keep my ears, eyes and heart open to find it.  And in the meantime try not to let the knowledge that the way I relate to the world after 4 years sitting at home is drastically different to how I used to be.  By example I offered help to Growler with job applications and his CV but suggested really he should ask friends and colleagues because I am now so out of touch with the ways of the world out there beyond these walls.  It’s gone from a world I am seperated from to a world I don’t really know.
  9. Finally a heartbreaking moment from last night’s outpouring.  We spent the evening with my dad and his partner at the weekend and stayed overnight.  Something he said to me, which I now forget but which isn’t important, triggered a notion that he really doesn’t understand what my life is like.  He really doesn’t realise how every moment of every day is restricted, limited and ill.  That it never ends.  That I continue to exist with ME, stuck at home, even when he’s not thinking of me and when life is carrying on.  Then I realised that no-one (except for PWEM and maybe Growler), no-one in my family, of my friends, no-one really knows what it’s like and how I live.  The crushing reality of it all.  The not knowing.  The time stretching back of day after day.  And then the crushing moment – they don’t want to know because it would be heartbreaking.  It is crushing to consider the reality, the relentlessness of it all.  And in truth I don’t want them to feel that and I don’t know that it helps anyone.  The majority of the time I don’t consider it as anything other than normal, typical.  I just live the life I have and am not oppressed by it.  Because if I stop to look at it really hard it crushes my heart and my spirit. But it leaked out yesterday – the pain of this situation and of the knowledge that it might always be this way to a larger or lesser degree.  I’ll never be who I was again.  I’ll never fully be able to do whatever I set my mind to because there will always be limits to be considered.  I’ll never fully share the burden with Growler.  I may never get back to being in the big world again.  Here’s the silver lining though – emotionally I am far better person that I used to be so why would I want to go back to who I was?  Only the physical possibilities are what I want back.  I have learnt so much about myself, life, others, compassion, patience, acceptance and that who we are is more than what we do.  It doesn’t stop the burn of the relentlessness of ME but it is some consolation.
  10. Finally last night’s outpouring reminded me how much I love my husband, how much he leaves me and how a good old snotty cry can be most educational.
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12 Responses to “Unexpected Truths”


  1. 1 Cusp February 10, 2011 at 1:35 pm

    Phew ! ….a long and difficult post to read and to write I’ll bet.

    I don’t think anyone who has not been in our situation can really understand the frustration, guilt, grief that goes with the territory. I do think that the ‘4 year deadline’ you mentioned recently has had a huge effect on how you’re feeling now…that and other stuff.

    In a way life with a chronic illness becomes sort of manageable when you are just doing the simple plod by plod, day to day stuff with a ‘que sera’ attitude: one is as one is, there’s stuff to get on with etc. etc. You just get on with it and dont think long term (well I dont )…but when you’re suddenly confronted by a look at the future, long term…as in the sort of look that other, healthy people have…..that’s when its like being thrown into a major trauma and becomes really hard.

    Incidentally workwise we have a similar situation here because my partner’s job will go in either March or July so there are job applications everywhere and CVs and ideas for this, for that and how we’ll manage…more pressure and more guilt about what can I do about it ? Not much except be as supportive as possible and do all the other bits I can manage.

    Heart goes out to you ….. (*)

    • 2 rachelcreative February 10, 2011 at 2:49 pm

      Yer not the most ME friendly post I’ve ever done I will admit! Thanks for sticking with it Cusp and for your encouraging words. And yes i shouldn’t underestimate the combo of ‘4 years’ and being forced to think longer term (and feeling guilty I’m stuck and can’t help out). Stressing about this change of jobs isn’t going to help anyone least of all growler who will just feel more pressure because he won’t want me to be stressed anymore.

      I’m sorry to hear you and your partner are facing a similar situation and all the uncertainity that comes with it. We all deserve some good fortune.

      Thanks again Cusp.

  2. 3 Shelli February 11, 2011 at 4:08 am

    There is so much here that resonates with me, but I don’t know if anything I could say would be helpful. I’m guilty of many of the same things with my own husband — expecting him to do things, because (as I explained it) I couldn’t, living vicariously through him. And I know I have felt frustrated knowing my parents still don’t “get” CFS, even while understanding why they refuse to understand.

    I’ve heard that mild depression actually has it’s benefits: removal from a stressful situation, introspection, problem solving, the development of a new perspective, and reintegrating this with the community upon recovery. (http://loolt.wordpress.com/2009/07/15/the-benefits-of-depression/)

    Sometimes we try so hard to stay in a place of acceptance, to bear our burdens with grace and dignity, and at some point, you just have to give in to the reality of the suffering, take time out, let yourself mourn.

    Hugs.

  3. 5 ashy February 12, 2011 at 5:45 pm

    Oh rachel, what an open-hearted post. I am glad I am not the only one to be writing unME friendly lengthy posts at the moment, but sad to hear you are also feeling the grief that I too seem to be struggling with. I went through your points going:
    number 1: tick – feel just like that: “happy enough BUT…”, number 2: have been feeling a little stronger in last 3-4 months, but not enough to mean anything – tick.
    Number 3 – I am doing some sit-down tai chi which may very gently strengthen some parts of me in the VERY long term and it’s about all I can do – tick.
    Number 5 – monitioring for depression – tick.
    Number 6 – missing the creative and all it brings – tick. Number 7 – feeling stressed at partner’s stress – tickety tick.
    Number 8 – picking at how she does things – I do this and it is the thing I hate the most about myself! Was surprised by the fact that you have this tendancy and interested in why you think you do it also – i thought I was just a controlling perfectionist, but perhaps there is more happening… I also feel completely out of touch with the world of work and many other worlds. It is a strange feeling to de-skill so spectacularly but I try to remember the new skills that I have, some like you mention in 9.
    DO you mean at the end how much he “leaves” you or is that a freudian slip? Coz he certainly loves you too 😉

    I think we have a lot in common! Also it is soon 5 years since i left work and perhaps this is a block of time that needs it’s own processing a bit like your four year marker as you were not right before that either. It has certainly been the worst time for me in terms of health and function, and perhaps I am a little shocked that time has flown and that my better phase where I worked part-time was only 5 and a half years in total. The balance has tipped the other way again – the story I tell myself and others about my illness has to change as this worse time continues. Like you I am wondering how I can make the best of what I have physically and I am also challenging myself to look at my emotions and coping strategies and if I can improve my quality of life that way. It is all we can do. I don’t think you can underestimate the stress of Growler’s work situation, not to mention the living quarters – a week without a boiler is enough to reduce anyone to tears! My partner is on the other side of the situation (so far!) where all the budget cuts and redundancies are making work very stressful/upsetting and pressured to deal with, even though she still has a job, which we are so grateful for.

    Your cry has been most educational for me too and made me think too! Thanks for doing the messy part 😉

    • 6 rachelcreative February 13, 2011 at 11:36 am

      Ooops Freudian slip. I think I’ll correct that!

      Thanks for sharing all of that and it’s reassuring that the emotions and so on I’m feeling are not so alien. Not that I want anyone else to be going through it either!

  4. 7 Dominique February 12, 2011 at 8:00 pm

    Oh Rachael! This made me tear up.

    Everything you say is so true, so transparent, so honest. Wow. Bravo! I’m so proud of you because I think this is huge.

    There is this constant stripping – kind of like taking the layers off of an onion – that happens day after day with those of us who have ME/CFS. It happens whether we want it to or not.

    I’m not sure if it is good or bad or if it just is. What I find awing and inspiring, however, is that we continue to allow this process. We continue to adapt, change, conform, grieve, let go, accept, move forward, and embrace.

    For a while now, I have been coming to a place that we are more grounded than perhaps many people are because we must continually analyze, access and adapt to the ever changing parameters of our lives.

    You have an amazing spirit and your transparency of heart and truthfulness of spirit is awing, inspiring and motivating.

    Thank you so much for this moving post!

    P.S. I have added a link to your blog on mine.

    • 8 rachelcreative February 13, 2011 at 11:55 am

      Well thank you. I seem to have a never ending onion to strip!

      But yes illness and life isn’t static and I wonder if the tricks ME plays on our minds in a factor in how quickly or easily we adapt.

      I’m glad you got something out of my post I was worried it was somewhat of a ramble.

  5. 9 Jo February 13, 2011 at 11:52 am

    Wow! Made me think how difficult it is for my partner, especially with my control freakery and how my support is so patchy depending on energy. In fact, how I’m likely to crash because I’m trying to hard to be the good partner and how I feel i’m letting him down so often.

    My Dad also doesn’t understand. Sometimes I get that heartsink feeling when he says something like – I was reading about that CFS thing you’ve got, it’s quite bad isn’t it?. And then two weeks later is forgetting I can’t do the six hour drive to Norfolk to sleep on the floor, or in fact that I can no longer afford to own a car.

    Then there’s the internal life. The exhaustion of staying ahead of depression or the exhaustion of giving into feelings. Some choice. And the constant external worry about jobs and benefits and keeping a roof over one’s head and finding enough money to do something nice once in a while. It’s all exhausting.

    Thanks for putting it so eloquently.

    • 10 rachelcreative February 16, 2011 at 12:32 pm

      It is exhausting Jo yes. Like Cusp said it’s so much easier when things are sort of stable in a day to day plod but you only need something to upset the balance and it gets very exhausting very quickly.

      I decided early on after reading a couple of articles and after Growler got v frustrated about some stuff that the best thing I could do to help out was to not make myself worse by trying to help. I’ll still do little things now and again but we figured out that if I say cook a meal and exhaust myself in the process that him having to support that exhaustion kind of negates the contribution of a meal in the first place.

      It is one of the hardest things to do – to not do things. To do nothing being my active contribution to making life better. Kind of goes against the grain.

      But I know not everyone has a partner who thinks the same way as Growler does in wanting to absorb all the day to day stuff and I’m also not saying it is The Way to be. Doing more and resting properly works for lots of other people just as well as our strategy.

  6. 11 Jocelyn February 16, 2011 at 1:23 am

    So much here, but let me just seize on one bit: I could have written every word of number 9, and I actually have had some of those thoughts rattling around for a while that I’ve been meaning to get down.

    Nobody really knowing outside my closest family is precisely why I started writing again, now that I’m able to type a bit lying down here. People have surprised me with how interested and affected they’ve been by my telling the story. I’ve gotten a lot of “This is astonishingly awful” and “I had no idea.” It has been rather strange to hear these things, because like you say, this has become just the way life is for me, you know? It sort of got worse and worse, but it’s normal for me and I’ve sort of forgotten about what the rest of the world is able to do!

    My father, who survived three occurrences of Hodgkin’s Disease, told me years ago that he thinks dealing with what I have is harder than was dealing with Stage IV cancer. At least with cancer you know you will eventually win or lose…not this interminable life in a holding pattern.

    • 12 rachelcreative February 16, 2011 at 12:20 pm

      I’m glad you commented and I got to discover your blog. Thanks. It’s great to find a voice and way to explain to people what it’s like. Though that too has it’s good and bad points. I want everyone to know what it feels like but I don’t want good kind people to worry or to feel helpless to do anything to make it better.

      The not knowing is so freakin hard. Especially as your own actions can influence the outcome – as can random things in life like a virus or a disaster.


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